Developmental-Behavioral Pediatrics, 5th Edition [5 ed.] 0323809723, 9780323809726, 9780323809733

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DEVELOPMENTAL-BEHAVIORAL

Pediatrics

FIF TH EDITION

DEVELOPMENTAL-BEHAVIORAL

Pediatrics

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Manuel E. Jimenez

Associate Professor of Pediatrics and Family Medicine and Community Health Rutgers Robert Wood Johnson Medical School Attending Developmental and Behavioral Pediatrician Children’s Specialized Hospital New Brunswick, New Jersey ​

Ellen Roy Elias

Director, Special Care Clinic Children’s Hospital Colorado Professor of Pediatrics and Genetics University of Colorado School of Medicine Aurora, Colorado

Nathan J. Blum

W.T. Grant Professor of Pediatrics Perelman School of Medicine University of Pennsylvania Chief, Division of Developmental and Behavioral Pediatrics Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

Terry Stancin

Chief of Psychology Director, Child & Adolescent Psychiatry & Psychology The MetroHealth System Professor, Departments of Psychiatry Pediatrics & Psychological Sciences Case Western Reserve University Cleveland, OH ​

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Heidi M. Feldman

Ballinger-Swindells Professor of Developmental and Behavioral Pediatrics Chief, Division of Developmental-Behavioral Pediatrics Stanford University School of Medicine Stanford California Service Chief, Developmental-Behavioral Pediatrics, Stanford Childrens Health Palo Alto, California

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Elsevier 1600 John F. Kennedy Blvd. Ste 1800 Philadelphia, PA 19103-2899

ISBN: 978-0-323-80972-6



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Developmental-Behavioral Pediatrics, FIFTH EDITION Copyright © 2023 by Elsevier Inc. All rights reserved Previous editions copyrighted 1983, 1992, 1999, 2009

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This book and the individual contributions contained in it are protected under copyright by the Publisher (other than as may be noted herein).

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Notice Practitioners and researchers must always rely on their own experience and knowledge in evaluating and using any information, methods, compounds or experiments described herein. Because of rapid advances in the medical sciences, in particular, independent verification of diagnoses and drug dosages should be made. To the fullest extent of the law, no responsibility is assumed by Elsevier, authors, editors or contributors for any injury and/ or damage to persons or property as a matter of products liability, negligence or otherwise, or from any use or operation of any methods, products, instructions, or ideas contained in the material herein.

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ISBN: 9780323809726

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Content Strategist: Sarah Barth Content Development Specialist: Rishi Arora Publishing Services Manager: Shereen Jameel Project Manager: Nadhiya Sekar Design Direction: Brain Salisbury Printed in India

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Last digit is the print number: 9 8

CONTRIBUTORS May V. Albee, BS

Clinical Research Coordinator Division of Oncology Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

Kathleen Angkustsiri, MD

Associate Professor of Clinical Pediatrics Developmental-Behavioral Pediatrician MIND Institute University of California–Davis Davis, California

Arash Anoshiravani, MD, MPH Division of Adolescent Medicine Department of Pediatrics Stanford University Palo Alto, California

David Alan Ansel, MD

Clinical Associate Professor of Pediatrics Division of Developmental-Behavioral Pediatrics Stanford University School of Medicine Lucille Packard Children’s Hospital Palo Alto, California

Marilyn Augustyn, MD

Professor of Pediatrics Boston University School of Medicine Director of Developmental-Behavioral Pediatrics BMC Boston, Massachusetts

Peter Baker II, MD

Associate Professor of Pediatrics and Clinical Genetics & Metabolism Department of Pediatrics University of Colorado Children’s Hospital Colorado Aurora, Colorado

Linda G. Bandini, PhD

Healthy Weight Research Network E.K. Shriver Center UMass Chan Medical School Boston, Massachusetts

William J. Barbaresi, MD

Tanni L. Anthony, PhD

Chief, Division of Developmental Medicine Boston Children’s Hospital Division of Developmental Medicine Boston Children’s Hospital & Harvard Medical School T. Berry Brazelton Professor of Pediatrics Harvard Medical School Boston, Massachusetts

Melissa Armstrong-Brine, PhD

Graduate School of Education The State University of New Jersey Rutgers University New Brunswick, New Jersey

Director of Access, Learning, and Literacy Colorado Department of Education Denver, Colorado MetroHealth Medical Center Center Case Western Reserve University Cleveland, Ohio

Jenna Arruda, MD, MPH

Pediatric Integrative Medicine The Sutcliffe Clinic Los Altos, California Pediatric Hospitalist Central Maine Medical Center Lewiston, Maine

Joan Rosenbaum Asarnow, PhD

Professor, Psychiatry and Biobehavioral Sciences Semel Institute for Neuroscience and Human Behavior David Geffen School of Medicine University of California Los Angeles Los Angeles, California

W. Steven Barnett, PhD

Brenda Bassingthwaite, PhD, BCBA

Associate Professor Munroe-Meyer Institute University of Nebraska Medical Center Omaha, Nebraska

Brittany S. Bassitt, MD

General Pediatrician Kaiser Permanent Northwest Hillsboro, Oregon

Courtney E. Batt, MD

Assistant Professor of Pediatrics Section of Adolescent Medicine University of Colorado School of Medicine Children’s Hospital of Colorado Aurora, Colorado

Rebecca A. Baum, MD

Clinical Professor of Pediatrics University of North Carolina School of Medicine

Developmental Behavioral Pediatrician UNC Health Chapel Hill, North Carolina

Fiona M. Baumer, MD

Assistant Professor of Neurology and of Pediatrics Stanford University School of Medicine Palo Alto, California

Ronald E. Becker, MD

Assistant Professor of Pediatrics Harvard Medical School Assistant in Pediatrics Boston Children’s Hospital Boston, Massachusetts

Anna Malia Beckwith, MD

Assistant Professor of Pediatrics Rutgers Robert Wood Johnson Medical School Section Chief of Developmental Behavioral Pediatrics Children’s Specialized Hospital New Brunswick, New Jersey

Nathaniel S. Beers, MD, MPA

Children’s National Hospital HSC Health Care System Washington, District of Columbia

David C. Bellinger, PhD, MSc Professor of Neurology Harvard Medical School Boston Children’s Hospital Boston, Massachusetts

Amanda E. Bennett, MD, MPH

The Children’s Hospital of Philadelphia Division of Developmental and Behavioral Pediatrics Philadelphia, Pennsylvania

Kelly Blankenship, DO

Associate Chief Medical Officer for Behavioral Health Dayton Children’s Hospital Dayton, Ohio

Nathan J. Blum, MD

W.T. Grant Professor of Pediatrics Perelman School of Medicine University of Pennsylvania Chief, Division of Developmental and Behavioral Pediatrics Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

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Contributors

Kristen Boog, MA

School of Psychological and Behavioral Sciences Southern Illinois University Carbondale, Illinois

Renée Boynton-Jarrett, MD, ScD

Case Western Reserve University School of Medicine Rainbow Babies and Children’s Hospital Division of Developmental-Behavioral Pediatrics and Psychology Cleveland, Ohio

Department of Pediatrics Boston University School of Medicine Vital Village Community Engagement Network Boston, Massachusetts

Nicole R. Bush, PhD

Nicholas J.K. Breitborde, PhD, ABPP

Eric M. Butter, PhD

Department of Psychiatry and Behavioral Health The Ohio State University Columbus, Ohio

Zoe Brennan-Krohn

Staff Attorney Disability Rights Program of the American Civil Liberties Union San Francisco, California

Annelise Brochier, MPH

Research Project Manager Boston Medical Center Department of Pediatrics Boston, Massachusetts

Shalonda Brooks, PhD

Nationwide Children’s Hospital Ohio State University Child Development Center Westerville, Ohio

Mariah Brown, BA

Pediatric Endocrinology Children’s Hospital Colorado University of Colorado School of Medicine Aurora, Colorado

Michelle R. Brown, PhD

Clinical Professor of Psychiatry Department of Psychiatry and Behavioral Sciences Division of Child and Adolescent Psychiatry Stanford Children’s Health Stanford University School of Medicine Stanford, California

Sophie Brunt, M Ed

Doctoral Student Department of Human Services School of Education and Human Development University of Virginia Charlottesville, Virginia

Kimberly Burkhart, PhD

Clinical Psychologist Associate Professor of Pediatrics and Psychiatry

University of California (UCSF) Department of Pediatrics Division of Developmental Medicine San Francisco, California Nationwide Children’s Hospital Department of Pediatric Psychology and Neuropsychology Ohio State University Columbus, Ohio

Eliza Buyers, MD

Assistant Professor Department of Obstetrics and Gynecology University of Colorado Anschutz Campus Pediatric and Adolescent Gynecology Children’s Hospital Colorado Aurora, Colorado

Caitlin F. Canfield, PhD

Division of Developmental and Behavioral Pediatrics Department of Pediatrics NYU Grossman School of Medicine New York, New York

Laura Arnstein Carpenter, PhD

Medical University of South Carolina Charleston, South Carolina

Kaitlyn Cavanaugh, MS, OTR/L, CLC Occupational Therapist & Certified Lactation Counselor Children’s Hospital Colorado Highlands Ranch, Colorado

Philip B. Cawkwell, MD

Child and Adolescent Psychiatrist Bay Area Clinical Associates Stanford University Palo Alto, California

Diane Chen, PhD

Potocsnak Family Division of Adolescent and Young Adult Medicine Pritzker Department of Psychiatry and Behavioral Health Ann & Robert H. Lurie Children’s Hospital of Chicago Department of Psychiatry and Behavioral Sciences Department of Pediatrics

Northwestern University Feinberg School of Medicine Chicago, Illinois

Gayle Chesley, PhD

Children’s Hospital of Philadelphia Perelman School of Medicine University of Pennsylvania Philadelphia, Pennsylvania

Marie A. Clark, MD, MPH

Assistant Professor of Pediatrics Case Western Reserve University School of Medicine Rainbow Babies and Children’s Hospital Division of Developmental-Behavioral Pediatrics and Psychology Cleveland, Ohio

Elizabeth Coan, PsyD

Psychologist Developmental Pediatrics Denver Fragile X Clinic Children’s Hospital Colorado University of Colorado School of Medicine Aurora, Colorado

Shereen J. Cohen, PhD

Postdoctoral Fellow MIND Institute University of California–Davis Davis, California

Cara Coleman, JD, MPH

Director of Public Policy and Advocacy Family Voices Lexington, Massachusetts

Sean T. Corbett, MD

Associate Professor Department of Urology University of Virginia School of Medicine Charlottesville, Virginia

DePorres Cormier II, MD

Division of Developmental Pediatrics Department of Pediatrics Saint Louis University School of Medicine SSM Cardinal Glennon Children’s Hospital Knights of Columbus Developmental Center St. Louis, Missouri

Claire A. Coyne, PhD

Potocsnak Family Division of Adolescent and Young Adult Medicine Pritzker Department of Psychiatry and Behavioral Health Ann & Robert H. Lurie Children’s Hospital of Chicago Department of Psychiatry and Behavioral Sciences Northwestern University Feinberg School of Medicine Chicago, Illinois

Contributors

Catherine Crouse, MM, MT-BC, NICU-MT, NMT

Master of Music in Music Therapy Music Therapist-Board Certified Neonatal Intensive Care Music Therapist Neurologic Music Therapist Lucile Packard Children’s Hospital Palo Alto, California

Carol Curtin, PhD

Healthy Weight Research Network E.K. Shriver Center UMass Chan Medical School Worcester, Massachusetts

Beth Ellen Davis, MD, MPH

Professor of Pediatrics Division of Neurodevelopmental and Behavioral Pediatrics University of Virginia Charlottesville, Virginia

Irene Cihon Dietz, MD

Division of Comprehensive Care Pediatrics MetroHealth Medical Center Case Western Reserve University School of Medicine Cleveland, Ohio

Elizabeth Dubow, MD

School of Psychological and Behavioral Sciences Southern Illinois University Carbondale, Illinois

John C. Duby, MD, CPE

Shanlee Davis, MD

Assistant Professor of Pediatrics and Genetics Director, Chromosome 15 clinics Children’s Hospital Colorado University of Colorado Anschutz Medical Campus Aurora, Colorado

Thomas P. Demaria, PhD

Consultant and Advisor National Center for School Crisis and Bereavement Children’s Hospital Los Angeles Los Angeles, California

Allison G. Dempsey, PhD

Department of Psychiatry University of Colorado School of Medicine Aurora, Colorado

Katie A. Devine, PhD, MPH

Rutgers Cancer Institute of New Jersey New Brunswick, New Jersey

Mary Beth DeWitt, PhD

Chief, Division of Child Psychology Dayton Children’s Hospital Dayton, Ohio

Liliane Diab, MD

Assistant Professor Department of Pediatrics, Section of Nutrition University of Colorado School of Medicine Clinical Director Clinical Nutrition: Growth and Parenting Lifestyle Medicine Clinics Aurora, Colorado

Assistant Professor, Pediatrics-Neurology Children’s Hospital Colorado University of Colorado Aurora, Colorado

Sarah E. Dubner, MD

Wright State University Boonshoft School of Medicine Dayton Children’s Hospital Dayton, Ohio

Pediatric Endocrinology University of Colorado School of Medicine Aurora, Colorado

Krista Eschbach, MD

Jordan Ezell Klein, PhD

Katie Davis, MSN, RN, PHNA-BC

Population Health Innovation Institute Institute for H.O.P.E. The MetroHealth System Cleveland, Ohio

Women & Infants Hospital Providence, Rhode Island

Assistant Professor, Pediatrics-Neurology Children’s Hospital Colorado University of Colorado Aurora, Colorado Instructor Division of Developmental-Behavioral Pediatrics Stanford University School of Medicine Stanford, California

Jessica Duis, MD, MS

Mei Elansary, MD, MPhil

Assistant Professor of Pediatrics Boston University School of Medicine Attending Physician BMC Boston, Massachusetts

Ellen Roy Elias, MD

Director, Special Care Clinic Children’s Hospital Colorado Professor of Pediatrics and Genetics University of Colorado School of Medicine Aurora, Colorado

Janice Enriquez, PhD

Associate Clinical Professor of Pediatrics MIND Institute UC Davis Health Davis, California

Medical University of South Carolina Charleston, South Carolina

Karla K. Fehr, PhD

Heidi M. Feldman, MD, PhD

Ballinger-Swindells Professor of Developmental and Behavioral Pediatrics Chief, Division of Developmental-Behavioral Pediatrics Stanford University School of Medicine Stanford California Service Chief, Developmental-Behavioral Pediatrics Stanford Childrens Health Palo Alto, California

Lauren B. Fishbein, PhD

Department of Child and Adolescent Psychiatry and Behavioral Sciences The Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

Jason M. Fogler, PhD

Senior Staff Psychologist Co-Director: ADHD Program Training Director: Leadership Education in Neurodevelopmental & related Disabilities (LEND) Division of Developmental Medicine, Boston Children’s Hospital Assistant Professor of Pediatrics & Psychology, Harvard Medical School Boston, Massachusetts

Deborah A. Frank, MD

Professor of Ophthalmology University of Colorado School of Medicine Aurora, Colorado

Founder Grow Clinic for Children Boston Medical Center Founder and Principal Investigator Children’s Health Watch Professor of Child Health and Well-Being Boston University School of Medicine Boston, Massachusetts

Shannon Erisman, PhD

Sandra L. Friedman, MD, MPH

Robert W. Enzenauer, MD, MPH/MSPH

Assistant Professor of Psychiatry and Human Behavior Clinician Educator Alpert Medical School at Brown University Clinical Director Postpartum Day Hospital

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Professor of Pediatrics University of Colorado School of Medicine Section Head, Developmental Pediatrics Children’s Hospital Colorado Aurora, Colorado

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Contributors

Sarah L. Friedman, PhD

Research Professor Department of Psychological and Brain Sciences The George Washington University Washington, District of Columbia

Mary A. Fristad, PhD, ABPP

Division of Child & Family Psychiatry Big Lots Behavioral Health Services Nationwide Children’s Hospital Columbus, Ohio

Nadine Gaab, PhD

Associate Professor of Education Harvard Graduate School of Education and Associate Professor of Pediatrics Harvard Medical School Boston, Massachusetts

Rachel Lee Gilgoff, MD

Senior Clinical and Science Advisor ACEs Aware Initiative Office of the California Surgeon General Aurrera Health Group Sacramento, California

R. Emily Gonzalez, PhD

Department of Pediatrics University of Virginia School of Medicine Charlottesville, Virginia

Julie Good, MD

Clinical Associate Professor Pediatric Pain Management and Pediatric Palliative Care Department of Anesthesiology, Perioperative and Pain Medicine (by courtesy, Pediatrics) Stanford Children’s Health Stanford University School of Medicine Center for Academic Medicine Stanford, California

Susan Hayden Gray, MD

Associate Professor of Pediatrics Medical Director of UVA Teen and Young Adult Health Center University of Virginia Charlottesville, Virginia

A. Dawn Greathouse, PhD, BCBA

Pediatric Neurodevelopmental Psychologist Child Development Center Nationwide Children’s Hospital Assistant Professor The Ohio State University Columbus, Ohio

Randi Hagerman, MD

Developmental Pediatrics University of California–Davis MIND Institute Sacramento, California

Eleanore M. Hall, PsyD

Department of Psychiatry University of Colorado School of Medicine Aurora, Colorado

Cleveland Medical Center Department of Pediatrics Case Western Reserve University Cleveland, Ohio

Howard Hall, PhD, PsyD, BCB

Albert Hergenroeder, MD

Professor of Pediatrics, Psychiatry, and Psychological Sciences Rainbow Babies & Children’s Hospital University Hospitals Cleveland Medical Center Division of Developmental/Behavioral Pediatrics & Psychology Cleveland, Ohio

Bonnie Halpern-Felsher, PhD

Professor of Pediatrics, Epdemiology and Population Health, and Psychiatry and Behavioral Sciences Division of Adolescent Medicine Department of Pediatrics Stanford University Palo Alto, California

Sarah A. Hamilton, MD

Department of Psychiatry and Behavioral Health The Ohio State University Columbus, Ohio

Robin L. Hansen, MD

Professor of Pediatrics Emerita MIND Institute University of California Davis School of Medicine Davis, California

Sandra G. Hassink, MD, MSc

Healthy Weight Research Network Emeritus Associate Professor of Pediatrics Nemours Children’s Hospital Wilmington, Delaware

Marissa Hauptman, MD, MPH

Associate Director Pediatric Environmental Health Center and Region 1 New England Pediatric Environmental Health Specialty Unit (PEHSU) Boston Children’s Hospital Boston, Massachusetts Assistant Professor, Harvard Medical School Boston, Massachusetts

Katheleen Hawes, PhD, PMH-CNS, BC

Assistant Professor of Pediatrics, Clinician Educator Alpert Medical School at Brown University Women & Infants Hospital Providence, Rhode Island

Rebecca A. Hazen, PhD

Division of Developmental and Behavioral Pediatrics & Psychology Rainbow Babies and Children’s Hospital University Hospitals

Professor of Pediatrics Pediatrics-Adolescent Medicine and Sports Medicine Chief, Adolescent Medicine and Sports Medicine Baylor College of Medicine Texas Children’s Hospital Houston, Texas

Jenniffer Herrera, MD

Assistant Professor of Pediatrics Division of Neurodevelopmental and Behavioral Pediatrics University of Virginia Charlottesville, Virginia

Francis Hickey, MD

Children’s Hospital Colorado Aurora, Colorado

Pamela High, MD

Professor of Pediatrics, Clinician Educator Alpert Medical School at Brown University Director, Developmental Behavioral Pediatrics Hasbro Children’s Hospital Providence, Rhode Island

Matthew C. Hocking, PhD

Pediatric Psychologist Division of Oncology Children’s Hospital of Philadelphia Department of Psychiatry Perelman School of Medicine University of Pennsylvania Philadelphia, Pennsylvania

Cody A. Hostutler, PhD

Clinical Assistant Professor of Pediatrics The Ohio State University Pediatric Psychologist Nationwide Children’s Hospital Columbus, Ohio

Susan Howell, MS, CGC

Genetic Counselor Developmental Pediatrics Denver Fragile X Clinic Children’s Hospital Colorado University of Colorado School of Medicine Aurora, Colorado

Lynne C. Huffman, MD

Professor of Pediatrics Division of Developmental-Behavioral Pediatrics Stanford University School of Medicine Stanford, California

Contributors

Abby Hughes-Scalise, PhD

Brooks Keeshin, MD

Clinical Psychology PsyD Program Augsburg University Minneapolis, Minnesota

University of Utah Salt Lake City, Utah

Susan L. Hyman, MD

Associate Professor University of Pittsburgh School of Health & Rehabilitation Sciences Pittsburgh, Pennsylvania

Healthy Weight Research Network University of Rochester Medical Center Rochester, New York

Kida Ingram, PhD

Psychologist Development Medicine Center Instructor Harvard Medical School Boston, Massachusetts

Sandhyaa Iyengar, MD MPH

Practice-Based Scholar The Center for Violence Prevention Children’s Hospital of Philadelphia The Perelman School of Medicine The University of Pennsylvania Philadelphia, Pennsylvania

Carissa R. Jackel, MD

Assistant Professor of Clinical Pediatrics Perelman School of Medicine University of Pennsylvania Associate Fellowship Program Director Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

Bayan Jalalizadeh, MD

Child, Adolescent, and Adult Psychiatrist Children’s Health Council Palo Alto, California

Manuel E. Jimenez, MD, MS

Associate Professor of Pediatrics and Family Medicine and Community Health Rutgers Robert Wood Johnson Medical School Attending Developmental and Behavioral Pediatrician Children’s Specialized Hospital New Brunswick, New Jersey

Megan M. Julian, PhD

Department of Psychiatry University of Michigan Ann Arbor, Michigan

Colleen Kahn, MA-MFT-AT, MA-ATR-BC Marriage and Family Therapy and Art Therapy Board Certified Art Therapist Lucile Packard Children’s Hospital Palo Alto, California

Robert D. Keder, MD

Connecticut Children’s Medical Center University of Connecticut School of Medicine Farmington, Connecticut

M. Kathleen Kelly, PhD, PT

Karen Kelminson, MD

Children’s Hospital Colorado Aurora, Colorado

Mary A. Khetani, ScD, OTR/L

Departments of Occupational Therapy and Disability and Human Development University of Illinois Chicago, Illinois

Bridget Kiley, MSc, LMCH

Holly Knotowicz, MS, CCC-SLP Speech Language Pathologist Picky Eaters Anonymous, LLC Portland, Maine

Aaina Kochhar, MD

Assistant Professor Section of Genetics & Metabolism Department of Pediatrics University of Colorado Anschutz Medical Campus Aurora, Colorado

Anson J. Koshy, MD, MBE

Associate Professor McGovern Center for Humanities and Ethics McGovern Medical School Houston, Texas

Mary C. Kral, PhD

Arlington Youth Counseling Center Cambridge, Massachusetts

Professor of Pediatrics Medical University of South Carolina Charleston, South Carolina

Judy Lu Kim, MD

Nancy F. Krebs, MD, MS

Patricia A. Kinser, PhD, WHNP-BC, RN

Casey E. Krueger, PhD

Assistant Professor Section of Transition Medicine Department of Medicine Department of Family and Community Medicine Baylor College of Medicine Houston, Texas Professor Virginia Commonwealth University School of Nursing Richmond, Virginia

Michael W. Kirkwood, PhD, ABPP-CN

Director Rehabilitation Psychology & Neuropsychology Department of Rehabilitation Children’s Hospital Colorado Professor, Department of Physical Medicine & Rehabilitation University of Colorado School of Medicine Aurora, Colorado

John R. Knight, Jr., MD

Founder and Director Emeritus Center for Adolescent Substance Use & Addiction Research (CeASAR) Department of Pediatrics Boston Children’s Hospital Boston, Massachusetts Associate Professor Pediatrics (Ret.) Harvard Medical School Boston, Massachusetts

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Professor of Pediatrics Head Section of Nutrition Associate Vice Chairman, Academic Affairs, Department of Pediatrics University of Colorado School of Medicine Aurora, Colorado Clinical Assistant Professor (Affiliated) Division of Developmental-Behavioral Pediatrics Department of Pediatrics Stanford University School of Medicine Palo Alto, California

Jeremy Kruger, MD

Department of Psychiatry and Behavioral Sciences University of Washington Seattle, Washington

Sara Kupzyk, PhD, LP, BCBA-D Assistant Professor University of Nebraska at Omaha Omaha, Nebraska

Gary Kwok, PhD

Rutgers Cancer Institute of New Jersey New Brunswick, New Jersey

Philip J. Landrigan, MD, MSc

Director Program for Global Public Health and the Common Good Boston College Chestnut Hill, Massachusetts

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Contributors

Austin Larson, MD

Assistant Professor of Pediatrics and Clinical Genetics & Metabolism Department of Pediatrics, Section of Clinical Genetics and Metabolism University of Colorado Children’s Hospital Colorado Aurora, Colorado

Adrienne Lazaro, MS

Department of Pediatrics Division of Adolescent Medicine Stanford University Palo Alto, California

Michele Ledesma, MD

Assistant Professor of Pediatrics New York Medical College Developmental & Behavioral Pediatrics Boston Children’s Health Physicians Maria Fareri Children’s Hospital Valhalla, New York

Stephen S. Leff, PhD

Co-Director The Center for Violence Prevention Children’s Hospital of Philadelphia The Perelman School of Medicine The University of Pennsylvania Philadelphia, Pennsylvania

John E. Leikauf, MD

Clinical Assistant Professor Child and Adolescent Psychiatry and Child Development Psychiatry and Behavioral Sciences Stanford University Palo Alto, California

Mary L. O’Connor Leppert, MB BCH

Kennedy Krieger Institute Johns Hopkins University School of Medicine Baltimore, Maryland

Michelle M. Macias, MD

Division of Developmental-Behavioral Pediatrics Department of Pediatrics Medical University of South Carolina Charleston, South Carolina

Dawn M. Magnusson, PT, PhD

Department of Physical Medicine and Rehabilitation University of Colorado Anschutz Medical Campus Aurora, Colorado

Fatima Malik, MD

Clinical Assistant Professor Department of Pediatrics University Hospitals Connor Whole Health Rainbow Babies and Children’s Hospital Cleveland, Ohio

Kathryn Mancini, PhD

MetroHealth Medical Center Department of Psychiatry Case Western Reserve University School of Medicine Cleveland, Ohio

Kilby Mann, MD

Department of Physical Medicine and Rehabilitation University of Colorado Children’s Hospital Colorado Aurora, Colorado

Melissa Marquardt, PhD Licensed Psychologist Independent Practice Oregon Health Sciences University Portland, Oregon

Raman Marwaha, MD

School of Psychological and Behavioral Sciences Southern Illinois University Carbondale, Illinois

Child/Adolescent Psychiatrist MetroHealth System Director MetroHealth Psychiatry Residency Program Assistant Professor of Psychiatry Case Western Reserve University School of Medicine Cleveland, Ohio

Irene M. Loe, MD

Micah Mazurek, PhD

Bethany Leraas, MA

Division of Developmental-Behavioral Pediatrics Department of Pediatrics Stanford University School of Medicine Stanford, California

Julie C. Lumeng, MD

Department of Pediatrics University of Michigan Ann Arbor, Michigan

Professor Department of Human Services School of Education and Human Development University of Virginia Charlottesville, Virginia

Susan H. McDaniel, PhD

Dr. Laurie Sands Distinguished Professor of Families & Health Departments of Psychiatry & Family Medicine

University of Rochester School of Medicine & Dentistry Rochester, New York

Eric McDonald, MD

Child and Adolescent Psychiatry The Permanente Medical Group Santa Clara, California

Laura Joan McGuinn, MD

Professor of Pediatrics Thomas Lowder Chair in DevelopmentalBehavioral Pediatrics Division of Developmental-Behavioral Pediatrics Department of Pediatrics The University of Alabama School of Medicine Birmingham, Alabama

Naomi J.L. Meeks, MD

Assistant Professor Section of Genetics & Metabolism Department of Pediatrics University of Colorado Anschutz Medical Campus Aurora, Colorado

Robyn Mehlenbeck, PhD, ABPP George Mason University Center for Psychological Services Fairfax, Virginia

Alan L. Mendelsohn, MD

Professor of Pediatrics and Population Health Division of Developmental and Behavioral Pediatrics Department of Pediatrics NYU Grossman School of Medicine New York, New York

Cheryl Messick, PhD

Department of Communication Science and Disorders School of Health and Rehabilitation Sciences University of Pittsburgh Pittsburgh, Pennsylvania

Jonathan W. Mink, MD, PhD

Endowed Professor in Pediatric Neurology Professor of Neurology, Neuroscience, and Pediatrics University of Rochester School of Medicine & Dentistry Rochester, New York

Laura J. Mintz, MD, PhD

Assistant Professor CWRU School of Medicine MetroHealth Medical Center Cleveland, Ohio

Contributors

Susan Mizner

Director Disability Rights Program of the American Civil Liberties Union San Francisco, California

Sonia A. Monteiro, MD

Department of Pediatrics Section of Developmental Pediatrics Baylor College of Medicine Meyer Center for Developmental Pediatrics & Autism Texas Children’s Hospital Houston, Texas

Deborah Mood, PhD

Department of Pediatrics University of Colorado Denver Aurora, Colorado

Jessica Moore, PhD

Assistant Professor Departments of Pediatrics and Psychiatry University of Rochester School of Medicine & Dentistry Rochester, New York

Sara W. Moyer, RN, BS

Virginia Commonwealth University School of Nursing Richmond, Virginia

Claudia M. Mueller, MD, PhD Associate Professor Department of Surgery Stanford University Stanford, California

Christina Mulé, PhD, NCSP

Assistant Professor Division of Developmental and Behavioral Pediatrics Department of Pediatrics, University of Rochester School of Medicine & Dentistry Assistant Professor, Division of Developmental and Behavioral Pediatrics Department of Pediatrics Tufts University School of Medicine Boston, Massachusetts

Tiffany Munzer, MD

Department of Pediatrics University of Michigan Ann Arbor, Michigan

Nancy Murphy, MD

Department of Pediatrics School of Medicine University of Utah Salt Lake City, Utah

Caitlin B. Murray, PhD

Padmini Palat, MD, MPH

Marsheena Murray, PhD, ABPP

Tonya M. Palermo, PhD

Department of Anesthesiology and Pain Medicine University of Washington School of Medicine & Seattle Children’s Hospital Seattle, Washington MetroHealth Medical Center Cleveland, Ohio

Brittany R. Myers, PhD

Pediatric Psychologist MetroHealth System Assistant Professor of Psychiatry Case Western Reserve University School of Medicine Cleveland, Ohio

Cy Nadler, PhD

Director of Autism Services Division of Developmental and Behavioral Health Children’s Mercy Kansas City Associate Professor of Pediatrics University of Missouri-Kansas City School of Medicine Kansas City, Missouri

Robert Needlman, MD

MetroHealth Medical Center Department of Pediatrics Case Western Reserve University School of Medicine Cleveland, Ohio

Jeffrey Okamoto, MD

Associate Professor University of Colorado Department of Pediatrics Section of Neurology Children’s Hospital Colorado Aurora, Colorado Department of Anesthesiology and Pain Medicine University of Washington School of Medicine Seattle Children’s Research Institute Seattle, Washington

Craig J. Parris, MS, APRN, PMHNP-BC, FNP-C Department of Psychiatry and Behavioral Health The Ohio State University Columbus, Ohio

Jessica Patel, PhD

Clinical Assistant Professor (Affiliated) Division of Developmental-Behavioral Pediatrics Department of Pediatrics Stanford University School of Medicine Palo Alto, California

Silvia Pereira-Smith, MD

Division of Developmental-Behavioral Pediatrics Department of Pediatrics Medical University of South Carolina Charleston, South Carolina

John A. Burns School of Medicine University of Hawaii–Manoa Kapiolani Medical Center for Women and Children Honolulu, Hawaii

Hannah Perrin, MD

Joyce Oleszek, MD

Megan Honor Pesch, MD, MS

Sara O’Rourke, MOT, OTR/L, BCP

Jaime W. Peterson, MD, MPH

Department of Physical Medicine and Rehabilitation University of Colorado Children’s Hospital Colorado Aurora, Colorado Outpatient Occupational Therapy Program Manager Nationwide Children’s Hospital Columbus, Ohio

Judith A. Owens, MD, MPH

Professor of Neurology Harvard Medical School Co-Director of Sleep Medicine Boston Children’s Hospital Waltham, Massachusetts

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University of California (UCSF) Department of Pediatrics Division of Developmental Medicine San Francisco, California Division of Developmental and Behavioral Pediatrics Department of Pediatrics University of Michigan Medical School Ann Arbor, Michigan Department of Pediatrics Oregon Health and Science University Portland, Oregon

Randall Phelps, MD, PhD

Developmental and Behavioral Pediatrician Associate Professor of Pediatrics Child Development and Rehabilitation Center Institute on Development and Disability Oregon Health and Science University Eugene, Oregon

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Contributors

Laura Pickler, MD, MPH

Associate Professor University of Colorado Aurora, Colorado

Aaron Powell, MD

Boston Children’s Hospital Mary Deming Scott Professor of Pediatrics Harvard Medical School Boston, Massachusetts

Pediatric Physiatrist Department of Rehabilitation Children’s Hospital Colorado Assistant Professor Department of Physical Medicine and Rehabilitation University of Colorado School of Medicine Aurora, Colorado

Jennifer M. Rathbun, MD, MA

Lisa Prock, MD, MPH

Karen Ratliff-Schaub, MD, MBOE

Clinical Assistant in Psychiatry Supervisor, Child & Adolescent Psychiatry Training Program Massachusetts General Hospital Clinical Instructor in Psychiatry Harvard Medical School Boston, Massachusetts

Director Developmental Medicine Center Boston Children’s Hospital Boston Assistant Professor Harvard Medical School Boston, Massachusetts

Children’s Hospital, Prisma Health System Clinical Associate Professor of Pediatrics University of South Carolina College of Medicine, Greenville Greenville, South Carolina

Michael A. Puente, MD

Shelly Reggiani, EdD

Assistant Professor of Ophthalmology University of Colorado School of Medicine Aurora, Colorado

Marianne Pugatch, PhD, LICSW

Postdoctoral Fellow Clifford Attkisson Clinical Services Research Training Program (T-32) Division of Adolescent and Young Adult Medicine Department of Pediatrics Benioff Children’s Hospital University of California, San Francisco Department of Psychiatry and Behavioral Sciences Weill Institute for Neurosciences University of California San Francisco, California

Jamie T. Rabot, MD

Child Development and Rehabilitation Center Institute on Development and Disability Oregon Health and Science University Eugene, Oregon

Lisa Ramirez, PhD, ABPP

Department of Child and Adolescent Psychiatry and Psychology, The MetroHealth System Department of Psychiatry Case Western Reserve University School of Medicine Cleveland, Ohio

Leonard A. Rappaport, MD, MS

Emeritus Chief Division of Developmental Medicine

North Clackamas School District Equity and Instructional Services Clackamas, Oregon Lewis and Clark College Graduate School of Education & Counseling Portland, Oregon

Marie Reilly, MD

Developmental Behavioral Pediatrician Developmental Medicine Center Boston Children’s Hospital Boston, Massachusetts

Dillon Reitmeyer, MSW

Rutgers School of Social Work New Brunswick, New Jersey

Bibiana Restrepo, MD

Associate Clinical Professor of Pediatrics MIND Institute UC Davis Health Davis, California

Luis A. Rivas Vazquez, BS

Research Assistant II Department of Pediatrics (Division of General Pediatrics) Oregon Health & Science University Portland, Oregon

Paul M. Robins, PhD

Children’s Hospital of Philadelphia Perelman School of Medicine University of Pennsylvania Philadelphia, Pennsylvania

Erin Roby, PhD

Division of Developmental and Behavioral Pediatrics Department of Pediatrics NYU Grossman School of Medicine New York, New York

Nancy J. Roizen, MD

Professor of Pediatrics Case Western Reserve University School of Medicine Rainbow Babies and Children’s Hospital Division of Developmental-Behavioral Pediatrics and Psychology Cleveland, Ohio

Rosmary Ros-DeMarize, PhD

Division of Developmental-Behavioral Pediatrics Department of Pediatrics Medical University of South Carolina Charleston, South Carolina

Erica Fornaris Rouch, PhD

Assistant Professor Department of Human Services School of Education and Human Development University of Virginia Charlottesville, Virginia

Suzanne Cushwa Rusnak, MEd, MSSA, LSW

Mindfulness Coordinator Connor Whole Health University Hospitals Independent Mindfulness Teacher, Coach Consultant Cleveland, Ohio

Afiya Sajwani, BA

Potocsnak Family Division of Adolescent and Young Adult Medicine Ann & Robert H. Lurie Children’s Hospital of Chicago Chicago, Illinois

Amy L. Salisbury, PhD, RN, PMH-CNS, BC

Professor and Associate Dean for Research, Scholarship, and Innovation Clinical Nurse Specialist, Child & Family Psychiatry Virginia Commonwealth University, School of Nursing Richmond, Virginia

Benjamin W. Sanders, MD, MSPH, MS Department of Pediatrics (Division of General Pediatrics) Oregon Health & Science University Portland, Oregon

Contributors

Ishani Sandesara, MD

Division of Hospitalist, Pediatrics Hospice, and Palliative Medicine Internal Medicine and Pediatrics University of Michigan School of Medicine Ann Arbor, Michigan

Kourtney Santucci, MD

Emily K. Shabason, MD

Attending Physician Division of Developmental and Behavioral Pediatrics Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

Laura A. Shaffer, PhD, ABPP

Assistant Professor Department of Pediatrics University of Colorado School of Medicine Aurora, Colorado

Department of Pediatrics University of Virginia School of Medicine Charlottesville, Virginia

Ellin K. Scholnick, Ph.D

Assistant Professor of Psychiatry and Behavioral Sciences Dell Medical School University of Texas–Austin Pediatric Psychologist Developmental and Behavioral Pediatrics Dell Children’s Medical Center Austin, Texas

Professor Emerita University of Maryland College Park, Maryland

David J. Schonfeld, MD

Director National Center for School Crisis and Bereavement Children’s Hospital Los Angeles Professor of Clinical Pediatrics Keck School of Medicine University of Southern California Los Angeles, California

Alison Schonwald, MD

Department of Pediatrics Cambridge Health Alliance Associate Professor Harvard Medical School Cofounder Touchstone Neurodevelopmental Center Woburn, Massachusetts

Justin Charles Schwartz, MD

Developmental-Behavioral Pediatrician Associate Professor of Pediatrics Division of Developmental-Behavioral Pediatrics Department of Pediatrics The University of Alabama School of Medicine Birmingham, Alabama

Brittany L. Schwarz, MD

Johns Hopkins University School of Medicine Kennedy Krieger Institute Bloomberg Children’s Center Baltimore, Maryland

Tina Scott-Mordhorst, MD

Clinical Professor University of Nebraska Medical Center Omaha, Nebraska

Kylie M.L. Seeley, MD, MPH Stanford School of Medicine Palo Alto, California

Jeffrey D. Shahidullah, PhD

Emily Shelkowitz, MD

Fellow in Clinical Genetics & Metabolism Department of Pediatrics Section of Clinical Genetics and Metabolism Children’s Hospital Colorado University of Colorado Aurora, Colorado

Jaclyn A. Shepard, PsyD

Associate Professor University of Virginia School of Medicine Behavioral Medicine Center Department of Psychiatry & Neurobehavioral Sciences Charlottesville, Virginia

Kevin M. Simon, MD

Attending Psychiatrist, Department of Psychiatry & Behavioral Science Adolescent Substance Use & Addiction Program (ASAP) Developmental Medicine Center, Boston Children’s Hospital Brookline, Massachusetts Instructor in Psychiatry Harvard Medical School Boston, Massachusetts

Kristen Slaymaker, DO

Developmental Pediatrics Children’s Hospital Colorado University of Colorado School of Medicine Aurora, Colorado

Peter J. Smith, MD, MA

Associate Professor of Pediatrics Section of Developmental and Behavioral Pediatrics University of Chicago Chicago, Illinois

xiii

Barbara Sourkes, PhD

Professor Department of Pediatrics Stanford University School of Medicine John A. Kriewall and Elizabeth A. Haehl Director, Palliative Care Program Lucile Packard Children’s Hospital Stanford Palo Alto, California

Leslie Speer, PhD, BCBA, NCSP

MetroHealth Medical Center Center Case Western Reserve University Cleveland, Ohio

Emily M. Spelbrink, MD, PhD Stanford University School of Medicine Palo Alto, California

Adiaha Spinks-Franklin, MD, MPH Division of Developmental Pediatrics Department of Pediatrics Baylor College of Medicine Houston, Texas

Deborah M. Spitalnik, PhD

The Boggs Center on Developmental Disabilities Professor of Pediatrics and Family Medicine and Community Health Rutgers Robert Wood Johnson Medical School New Brunswick, New Jersey

Margaret Stager, MD

Professor CWRU School of Medicine MetroHealth Medical Center Cleveland, Ohio

Terry Stancin, PhD, ABPP

Chief of Psychology Director, Child & Adolescent Psychiatry & Psychology The MetroHealth System Professor, Departments of Psychiatry Pediatrics, & Psychological Sciences Case Western Reserve University Cleveland, Ohio

Meg Stanger, MS, PT, PCS

Manager of Occupational Therapy and Physical Therapy UPMC Children’s Hospital of Pittsburgh Pittsburgh, Pennsylvania

Walter H. Stearns, MD

Department of Psychiatry and Behavioral Health The Ohio State University Columbus, Ohio

xiv

Contributors

Terri Stillwell, MD, MPH

Division of Pediatric Infectious Diseases Department of Pediatrics University of Michigan Medical School Ann Arbor, Michigan

Stephanie K. Takamatsu, PhD

Department of Psychiatry University of Colorado School of Medicine Aurora, Colorado

Nicole Tartaglia, MD

Developmental Pediatrics Denver Fragile X Clinic Children’s Hospital Colorado University of Colorado School of Medicine Aurora, Colorado

Talia Thompson, PhD

Developmental Pediatrics Children’s Hospital Colorado University of Colorado School of Medicine Aurora, Colorado

Sarah J. Tlustos, PhD, ABPP-CN

Pediatric Neuropsychologist Department of Rehabilitation Children’s Hospital Colorado Assistant Professor Department of Physical Medicine and Rehabilitation University of Colorado School of Medicine Aurora, Colorado

Eric Tridas, MD

Medical Director (retired) of the Tridas Center for Child Development Tampa, Florida

Doris Valenzuela-Araujo, MD Department of Pediatrics Oregon Health and Science University Portland, Oregon

Amanda Van Scoyoc

Community Faculty Member Yale Child Study Center New Haven, Connecticut

Douglas L. Vanderbilt, MD

Associate Clinical Professor Volunteer, Department of Pediatrics University of California–San Francisco Pediatrician/Consultant Tenderloin Community School Bay Area Women’s and Children’s Center San Francisco, California

MetroHealth Medical Center Case Western Reserve University Cleveland, Ohio

Robert G. Voigt, MD

Department of Pediatrics Section of Developmental Pediatrics Baylor College of Medicine Meyer Center for Developmental Pediatrics & Autism Texas Children’s Hospital Houston, Texas

Christine Waanders, PhD

Practice-Based Scholar The Center for Violence Prevention Children’s Hospital of Philadelphia Philadelphia, Pennsylvania

Kate E. Wallis, MD, MPH

Laura Weissman, MD

Assistant Clinical Professor of Pediatrics Licensed Clinical Psychologist MIND Institute University of California–Davis Davis, California

Assistant Clinical Professor of Pediatrics Licensed Clinical Psychologist MIND Institute University of California–Davis Davis, California

Jessica VanOrmer Simpson, PhD

Elizabeth Troy, MD

Megan E. Tudor, PhD

Breanna M. Winder-Patel, PhD

Larry Wissow, MD

George Mason University Center for Psychological Services Fairfax, Virginia Assistant Professor University of Colorado Department of Pediatrics Section of Neurology Children’s Hospital Colorado Aurora, Colorado

Genetics, Rady Children’s Hospital San Diego, California

Professor of Clinical Pediatrics (Educational Scholar) Keck School of Medicine of University of Southern California Children’s Hospital of Los Angeles Los Angeles, California

Division of Developmental-Behavioral Pediatrics Children’s Hospital of Philadelphia Department of Pediatrics Perelman School of Medicine at the University of Pennsylvania Philadelphia, Pennsylvania

Paige J. Trojanowski, PhD

Kristen Wigby, MD

Assistant Professor in Pediatrics Harvard Medical School Attending Physician Division of Developmental Medicine Boston Children’s Hospital Boston, Massachusetts

Carol Weitzman, MD

Co-Director Autism Spectrum Center Boston Children’s Hospital Boston, Massachusetts

Department of Psychiatry and Behavioral Sciences University of Washington Seattle, Washington

Kara K. Wright, MD, MPH

Michele Yang, MD

Associate Professor, Department of Pediatrics and Neurology University of Colorado Denver Children’s Hospital Colorado Aurora, Colorado

Angela Yarnell Bonino, PhD, CCC-A University of Colorado Boulder Department of Speech, Language, and Hearing Sciences Boulder, Colorado

Mary Yarus, M Ed, LDT, CALT

Dyslexia Specialist Region 4 Education Service Center Houston, Texas

Ann Ming Yeh, MD

Clinical Associate Professor Department of Pediatrics Division of of Gastroenterology, Hepatology, and Nutrition School of Medicine, Stanford University Palo Alto, California

Musa Yilanli, MD

Division of Child & Family Psychiatry Big Lots Behavioral Health Services Nationwide Children’s Hospital Columbus, Ohio

Contributors

Samuel H. Zinner, MD

Professor of Pediatrics University of Washington School of Medicine Developmental-Behavioral Pediatrician Seattle Children’s Hospital Seattle, Washington

Marcia Zorrilla, DrPH, MPH

Katharine E. Zuckerman, MD, MPH

Barry Zuckerman, MD

Lucas Zullo, PhD

Division of Adolescent Medicine Department of Pediatrics Stanford University Palo Alto, California Professor and Chair Emeritus of Pediatrics Boston University School of Medicine Boston, Massachusetts

Department of Pediatrics (Division of General Pediatrics) Oregon Health & Science University Portland, Oregon University of California–Los Angeles Los Angeles, California

xv

P R E FA C E Welcome to the fifth edition of Developmental-Behavioral Pediatrics. As editors, we have attempted to ensure that the new version maintains the high standards of the previous four editions. We are humbled as we recognize that, for the first time, none of the editors of this textbook served as editors for the first edition of Developmental-Behavioral Pediatrics, published in 1983. We recognize and thank all the previous editors and authors whose fine contributions to earlier versions helped to create and define the field of developmentalbehavioral pediatrics. In the almost 40 years since the first edition of this textbook was published, developmental-behavioral pediatrics has evolved with enhanced theories, important scientific discoveries, increasing prevalence of developmental and behavioral conditions, new interventions, and our improved understanding of important influences on outcomes. We sought to reflect these profound changes with a new organization and new chapters in the book. The book begins with a new section on the theoretical foundations of developmental-behavioral pediatrics care and research. The section on life stages has a new chapter on important considerations for the transition to adulthood for all adolescents. The sections on environmental and on biologic influences have been expanded and updated to include more information on parenting, adverse childhood experiences, genetics, and brain injury and to address racism and bias in healthcare settings. The coverage of developmental, behavioral, and emotional conditions and the developmental and behavioral outcomes of physical health conditions has been expanded to include new chapters on suicide and self-harm, stress disorders, movement disorders, brain tumors, and sexuality in children with developmental disabilities. We open each chapter with a pithy vignette, designed to excite the reader’s interest and to humanize the conditions and issues we address. Throughout the book, we have highlighted the interprofessional care required to optimize outcomes for children with developmental and behavioral conditions and their families. An interprofessional focus is reflected in our editor group that now includes Terry Stancin PhD, a leading psychologist in the field of developmental-behavioral pediatrics, complementing the two returning editors, Heidi Feldman MD, PhD and Ellen Elias MD, and the other two new editors, Nathan Blum MD and Manuel Jimenez MD, MS. Where appropriate, the chapters are authored by individuals from more than one professional discipline. With an interprofessional focus, we also greatly expanded the section on assessment and measurement to include chapters on evaluation of children who are minimally verbal, evaluation of emotions and behaviors, neuropsychological assessment, and assessment of adaptive functioning. Another new chapter discusses approaches to integrating data across different assessments and managing uncertainty. Similar expansion has occurred in the management section with new chapters on counseling and readiness ​

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to change, a common factors approach to counseling, applied behavior analysis, rehabilitation services, community-based interventions, and endocrine and gynecological care for youth with severe disabilities. As in the previous edition, we end with a section on systems issues, and in the final chapter we, the editors, reflect on implications of the right to belong and the right to be different for interprofessional care for children with developmental and behavioral conditions. Given the emphasis on interprofessional care throughout the book, we hope that this volume will meet the needs of a varied and interprofessional readership. For the specialist in developmental-behavioral pediatrics providing clinical care or in-training, it should provide a reliable resource for the best information available in this broad and complex field. For clinicians in primary care, psychology, psychiatry, education, nursing, rehabilitation therapies, social work, and other professions, the book offers comprehensive coverage of the wide spectrum of developmental, behavioral, emotional, physical, and psychosocial challenges clinicians assess and manage when they care for children, youth, young adults, and their families. For researchers, the book provides a summary of the current state of knowledge and identifies gaps where our knowledge needs to be expanded and improved. This book came together with the contributions of many. We thank the outstanding returning and new authors whose contributions allowed us to achieve our ambitious goals for this book. Our publisher has provided tremendous enthusiasm, guidance, and support, critical to completing this project. In addition, we gratefully acknowledge the multitude of ways in which the US Department of Health and Human Services, Health Resources and Services Administration (HRSA), Maternal Child Health Bureau (MCHB) has supported the field of developmental and behavioral pediatrics and interprofessional education. Children and families, faculty, and trainees in multiple disciplines, many authors and readers of the book, and the editors have benefited from HRSA-supported programs, including the Leadership Education in Developmental-Behavioral Pediatrics training program, the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) training program, and a variety of research networks focused on the care of children with autism and on the practice of developmental and behavioral pediatrics. Finally, we thank the children and families we care for, our colleagues, and our own families. All of you inspire us every day. The previous editions of the book have all ended the Preface with poems or quotes from famous authors. In recognition of the importance of history and tradition, and previous editors of the book, we humbly continue that tradition. We appreciate the sentiments of this poem, though we might have chosen different pronouns for this current era. ​

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xviii

Preface

CHILDREN LEARN WHAT THEY LIVE ​If a child lives with criticism, He learns to condemn. If a child lives with hostility, He learns to fight. If a child lives with ridicule, He learns to be shy. If a child lives with shame, He learns to feel guilty. If a child lives with tolerance, He learns to be patient. If a child lives with encouragement, He learns confidence. If a child lives with praise, He learns to appreciate. If a child lives with fairness, He learns justice. If a child lives with security, He learns to have faith. If a child lives with approval, He learns to like himself. If a child lives with acceptance and friendship, He learns to find love in the world.​ Dorothy Lew Nolte​ The Editors​

Downloaded for Anonymous User (n/a) at Egyptian Knowledge Bank from ClinicalKey.com by Elsevier on December 25, 2022. For personal use only. No other uses without permission. Copyright ©2022. Elsevier Inc. All rights reserved.

CONTENTS

1 An Introduction to the Field of DevelopmentalBehavioral Pediatrics, 1 Douglas L. Vanderbilt and Heidi M. Feldman

2 The Biopsychosocial Model: Understanding Multiple, Interactive Influences on Child Development and Behavior, 11 Megan M. Julian and Julie C. Lumeng

3 Theories of Human Development, 19 Sarah L. Friedman and Ellin K. Scholnick

4 Theories of Learning and Behavior Change, 28 Cy Nadler and A. Dawn Greathouse

SECTION 2 Life Stages 5 The Maternal-Fetal Dyad: Challenges and Adaptations, 37 Amy L. Salisbury, Sara W. Moyer, Shannon Erisman, Patricia A. Kinser, Katheleen Hawes, and Pamela High

6 Infancy, 49

Marilyn Augustyn, Mei Elansary, and Barry Zuckerman

7 Toddlerhood and the Preschool Years, 59

Rosmary Ros-DeMarize, Silvia Pereira-Smith, and Michelle M. Macias

8 Middle Childhood, 72 David Alan Ansel

9 Adolescence, 91 Bonnie Halpern-Felsher, Marcia Zorrilla, Adrienne Lazaro, and Arash Anoshiravani

1 0 Transition to Adulthood, 108

Kimberly Burkhart, Marie A. Clark, Courtney E. Batt, and Nancy J. Roizen

11 End-of-Life, Death, and Bereavement, 116

Michelle R. Brown, Julie Good, and Barbara Sourkes

SECTION 3 Social and Environmental Contexts of Children 12 Understanding Child Development and Behavior in the Context of Family Systems, 121 Jessica Moore, Christina Mulé, and Susan H. McDaniel

13 Parenting and Parenting Behavior, 133

Caitlin F. Canfield, Erin Roby, Kimberly Burkhart, Renée BoyntonJarrett, and Alan L. Mendelsohn

14 Foster Care and Adoption: Implications for Developmental and Behavioral Pediatrics, 143 Kida Ingram and Lisa Prock

15 Trauma, Resilience, and Child Development, 153 Marsheena Murray and Robert D. Keder

16 Childcare, 163

W. Steven Barnett and Anna Malia Beckwith

17 Peers, 167



SECTION 1 F oundations of DevelopmentalBehavioral Pediatrics

Gary Kwok and Katie A. Devine

18 Schools as a Milieu, 171

Anson J. Koshy and Mary Yarus

19 Neighborhoods and Personal Networks, 178 Sarah E. Dubner and Lynne C. Huffman

20 Celebrating Sociocultural Diversity in the Exam Room and Addressing Racism and Bias, 189 Irene M. Loe, Adiaha Spinks-Franklin, and Kate E. Wallis

21 The Influence of Digital Media on Children and Families, 201 Tiffany Munzer

22 Natural and Human Disasters, 210 David J. Schonfeld and Thomas P. Demaria

SECTION 4 B  iological Factors, Medical Conditions, and Exposures Affecting Development and Behavior 23 Biological Mechanisms of Human Development and Behavior, 221 Ellen Roy Elias

24 Genetic Disorders and Their Associated Mechanisms, 226 Jessica Duis and Ellen Roy Elias

25 Chromosome Disorders and Inheritance Patterns, 241 Aaina Kochhar and Naomi J.L. Meeks

26 Sex Chromosome Aneuploidy, 249 Kristen Wigby, Talia Thompson, Mariah Brown, Nicole Tartaglia, and Shanlee Davis

27 Down Syndrome, 262

Francis Hickey and Karen Kelminson

28 Fragile X Syndrome and FMR1 Variants, 270 Susan Howell, Elizabeth Coan, Kristen Slaymaker, Randi Hagerman, and Nicole Tartaglia

29 Nervous System, 280

Elizabeth Troy and Padmini Palat

30 Neuromuscular Disorders, 297 Michele Yang

31 Seizures and Epilepsy, 304 Elizabeth Dubow and Krista Eschbach

32 Diffuse Acquired Brain Injury, 315 Sarah J. Tlustos, Aaron Powell, and Michael W. Kirkwood

33 Congenital Infections, 324

Megan Honor Pesch and Terri Stillwell

34 Consequences of Preterm Birth, 333 Brittany L. Schwarz and Mary L. O’Connor Leppert

35 Nutritional Disorders, 344 Liliane Diab and Nancy F. Krebs

xix

Contents



36 Inborn Errors of Metabolism, 357 Emily Shelkowitz, Austin Larson, and Peter Baker II

37 Prenatal Exposure of Alcohol, Tobacco, and Drugs, 390 Carol Weitzman and Michele Ledesma

38 The Impact of Environmental Chemicals on the Developing Brain, 398

56 Acute Stress Disorder and Posttraumatic Stress Disorder in Youth, 594

xx

Jason M. Fogler, Amanda Van Scoyoc, Melissa Marquardt, and Randall Phelps

57 Adjustment and Adjustment Disorders in Developmental-Behavioral Pediatrics, 609 Kathryn Mancini and Robert Needlman

Marissa Hauptman and Philip J. Landrigan

SECTION 5 Developmental Disorders 39 Cerebral Palsy and Other Motor Disorders, 407 Kilby Mann, Joyce Oleszek, and Nancy Murphy

40 Intellectual Disability, 420

Sandra L. Friedman and Ellen Roy Elias

41 Autism Spectrum Disorder, 431

Bibiana Restrepo, Janice Enriquez, and Robin L. Hansen

42 Developmental Considerations in Deafness, 445

Deborah Mood and Angela Yarnell Bonino

43 Blindness and Visual Impairment, 455 Michael A. Puente, Tanni L. Anthony, and Robert W. Enzenauer

44 Language and Speech Disorders, 466 Heidi M. Feldman and Cheryl Messick

45 Sensory Processing Disorders, 477 Karen Ratliff-Schaub and Sara O’Rourke

SECTION 6 V  ariation in Behavior, Learning, Emotion, and Mental Health 46 Attention-Deficit/Hyperactivity Disorder (ADHD), 483

SECTION 7 D  evelopmental and Behavioral Considerations Related to Medical Care 58 Impact of Hospitalization and Acute Medical Care on Children and Families, 615 Gayle Chesley and Paul M. Robins

59 Children with Chronic Illness and Medical Complexity, 621 Kourtney Santucci and Ellen Roy Elias

60 Survivors of Childhood Brain Tumors: Developmental and Behavioral Considerations, 630 Emily K. Shabason, May V. Albee, and Matthew C. Hocking

61 Neurodevelopment in Children With Congenital Heart Disease, 636 David C. Bellinger and Leonard A. Rappaport

62 Medications With Developmental and Behavioral Side Effects, 643 Sonia A. Monteiro and Robert G. Voigt

63 Palliative Care for Children With Medical Complexity, 649 Irene Cihon Dietz and Ishani Sandesara

64 Chronic Pain, 660

Caitlin B. Murray and Tonya M. Palermo

William J. Barbaresi and Jason M. Fogler

47 Learning Disabilities, 497

Nadine Gaab, Marie Reilly, and Eric Tridas

48 Talent and Giftedness, 510 Mary C. Kral

49 Mood Disorders in Children and Adolescents, 516 Musa Yilanli and Mary A. Fristad

50 Suicide Prevention Care in the Pediatric Setting: A Trauma-Informed Approach, 529

SECTION 8 Variations in Functional Domains 65 Feeding and Swallowing Disorders, 671 Laura Pickler, Kaitlyn Cavanaugh, and Holly Knotowicz

66 Growth Faltering, 677

Jennifer M. Rathbun, Annelise Brochier, and Deborah A. Frank

67 Childhood Obesity, 685

Carol Curtin, Sandra G. Hassink, Susan L. Hyman and Linda G. Bandini

Lucas Zullo, Brooks Keeshin, and Joan Asarnow

68 Urinary Incontinence and Nocturnal Enuresis, 692

Rebecca A. Hazen and Marie A. Clark

69 Toileting and Encopresis, 701

51 Anxiety Disorders in Children and Adolescents, 537 52 Psychotic-Spectrum Disorders in Children and Adolescents, 549 Sarah A. Hamilton, Craig J. Parris, Nicholas J.K. Breitborde, and Walter H. Stearns

53 Substance Use Disorders and Other Risk-Taking Behaviors in Youth, 559 Kevin M. Simon, Marianne Pugatch, and John R. Knight

54 Dual Diagnosis of Mental Health and Developmental Disorders in Developmental-Behavioral Pediatrics, 576 Shalonda Brooks and Eric M. Butter

55 Aggression and Disruptive Behavior Disorders, 584 Stephen S. Leff, Christine Waanders, and Sandhyaa Iyengar

Jaclyn A. Shepard and Sean T. Corbett Laura Weissman

70 Sleep and Sleep Disorders In Children, 711 Ronald E. Becker and Judith A. Owens

71 Movement Disorders, 722

Samuel H. Zinner and Jonathan W. Mink

72 Habit Disorders in Children and Adolescents, 735 Carissa R. Jackel and Nathan J. Blum

73 Sexuality and Its Variations, 744 Laura J. Mintz and Margaret Stager

74 Sexuality in Children and Youth With Disabilities, 748 Beth Ellen Davis, Susan Hayden Gray, and Jenniffer Herrera

Contents



75 Gender and Its Variation in Youth, 757 Claire A. Coyne, Afiya Sajwani, and Diane Chen

SECTION 9 A  ssessment and Measurement in Developmental-Behavioral Pediatrics 76 Fundamentals of Developmental, Behavioral, and Psychological Assessment, 765 Melissa Armstrong-Brine, Jessica VanOrmer Simpson, and Terry Stancin

77 The Interview in Developmental-Behavioral Pediatrics, 776

John C. Duby, Kelly Blankenship, and Mary Beth DeWitt

78 The Physical Exam: Laying on of Hands…or Not, 785 Jamie T. Rabot, Randall Phelps, and Heidi M. Feldman

79 Evaluation of Children Who Are Nonverbal/Minimally Verbal, 793 Casey E. Krueger and Jessica Patel

80 Assessment of Temperament, 799 Hannah Perrin and Nicole R. Bush

81 Developmental Surveillance and Screening, 804 Benjamin W. Sanders, Brittany S. Bassitt, Luis A. Rivas Vazquez, and Katharine E. Zuckerman

82 Evaluation of Emotion and Behavior, 813 Laura A. Shaffer and R. Emily Gonzalez

83 Evaluation of School Readiness: Beyond ABCs, 824 Jaime W. Peterson, Doris Valenzuela-Araujo, Kylie M. L. Seeley, and Shelly Reggiani

84 O  bservational Assessment in DevelopmentalBehavioral Pediatrics, 831 Jordan Ezell Klein and Laura Arnstein Carpenter

85 Developmental, Cognitive, and Intelligence Testing, 838 Stephanie K. Takamatsu, Eleanore M. Hall, and Allison G. Dempsey

86 E ducational Testing and Evaluation of Academic Performance, 847

Sara Kupzyk, Brenda Bassingthwaite, and Tina Scott-Mordhorst

87 Neuropsychology in Developmental-Behavioral Pediatrics Practice, 858 Melissa Armstrong-Brine and Leslie Speer

88 Evaluation of Adaptive Functioning, 865 Micah O. Mazurek, Sophie Brunt, and Erica Fornaris Rouch

89 Assessments of the Central Nervous System, 871 Fiona M. Baumer and Emily M. Spelbrink

90 Integration of Data Sources and Uncertainty, 880 Alison Schonwald and Bridget Kiley

SECTION 10 Interventions, Management, and Treatment of Developmental and Behavioral Conditions 91 Counseling and Readiness to Change, 887 Rebecca A. Baum and Cody A. Hostutler

xxi

92 Common Factors and Lifestyle Interventions, 894 Jeremy Kruger and Larry Wissow

93 Behavioral Parent Training and Consultation, 902 Cy Nadler and Nathan J. Blum

94 A  pplied Behavior Analysis for Autism Spectrum Disorder, 912 Amanda E. Bennett and Lauren B. Fishbein

95 C  risis Management in Developmental-Behavioral Pediatrics, 923 Brittany R. Myers and Raman Marwaha

96 I ndividual Therapy for Children and Adolescents: Play Therapy and Interpersonal Therapy as Developmentally Centered Relational Change Modalities, 931 Karla K. Fehr, Abby Hughes-Scalise, Bethany Leraas, and Kristen Boog

97 Family Systems Therapy and Its Importance in Developmental-Behavioral Pediatrics, 940 Robyn Mehlenbeck and Paige J. Trojanowski

98 Cognitive-Behavioral Therapy in DevelopmentalBehavioral Pediatrics, 947 Megan E. Tudor, Shereen J. Cohen, Breanna M. Winder-Patel, and Kathleen Angkustsiri

99 Psychopharmacology, 958

DePorres Cormier II and Alison Schonwald

100 Hypnosis, Biofeedback, and Meditation, 974 Howard Hall, Fatima Malik, and Suzanne Rusnak

101 G  rowth Mindset as a Brief Intervention: Research to Practice, 982 Irene M. Loe, Kara K. Wright, and Claudia M. Mueller

102 Treatment of Developmental, Behavioral, and Mental Health Conditions via Technology, 990 Philip B. Cawkwell, Bayan Jalalizadeh, Eric McDonald, and John E. Leikauf

103 Early Intervention, 996

Dawn M. Magnusson and Mary A. Khetani

104 Special Education Services, 1005 Nathaniel S. Beers and Cara Coleman

105 T ransition to Adulthood for Young Adults With Intellectual and Developmental Disabilities, 1014 Judy Lu Kim and Albert Hergenroeder

106 R  ehabilitation Services: Occupational Therapy and Physical Therapy, 1023 M. Kathleen Kelly and Meg Stanger

107 S  peech-Language Pathology for DevelopmentalBehavioral Disorders, 1029 Cheryl Messick

108 Art and Music Therapy, 1035 Colleen Kahn and Catherine Crouse

109 I ntegrative Medicine for Disorders of Development and Behavior, 1041 Ann Ming Yeh, Rachel Lee Gilgoff, and Jenna Arruda

110 Community-Based Interventions, 1050 Lisa Ramirez and Katie Davis

Contents



111 E ndocrine and Gynecologic Management of Children With Severe Disabilities, 1057 Shanlee Davis and Eliza Buyers

115 Interprofessional Team-Based Care, 1088

xxii

Jeffrey D. Shahidullah, Cody A. Hostutler, and Rebecca A. Baum

116 Ethical Considerations, 1096 Peter J. Smith

SECTION 11 Societal and Legal Contexts of Developmental-Behavioral Pediatrics 112 Social Inclusion, 1067 Deborah M. Spitalnik and Dillon Reitmeyer

113 E ducation Law: Implications for DevelopmentalBehavioral Pediatrics, 1073 Jeffrey Okamoto

114 H  ealth Care Systems for Children With Disabilities, 1079 Justin Charles Schwartz and Laura Joan McGuinn

117 T he Pitfalls of Guardianship (Conservatorship) and the Promise of Alternatives, 1100 Zoe Brennan-Krohn and Susan Mizner

SECTION 12 Conclusion 118 The Right to Belong, The Right to be Different, 1107 Heidi M. Feldman, Ellen Roy Elias, Nathan J. Blum, Manuel E. Jimenez, and Terry Stancin

Index, 1111 Color versions of the figure are available in the online version

SECTION 1 Foundations of Developmental-Behavioral Pediatrics  

1 An Introduction to the Field of Developmental-Behavioral Pediatrics Douglas L. Vanderbilt and Heidi M. Feldman

For additional material related to the content of this chapter, please see Chapters 2, 3, 113, 117, and 120.

VIGNETTE A group of medical students from the Pediatric Interest Group approach you seeking career guidance. You probe their interests and goals. They desire that their career be built on a solid molecular and biomedical foundation yet tempered with an understanding of the social context and psychological contributors to health and illness. They want to keep open the possibility of working not only in clinical care, teaching, and research but also in systems-level policy and advocacy. They want to address important clinical and societal needs and prefer to do so in innovative, collaborative partnerships that empower families, primary care colleagues, and interdisciplinary teams. They find thinking both at macro- and microsystems levels to be exciting and understand that important outcomes of medical care include not only disease-free survival but maybe also optimal functional outcomes for individuals and populations. Finally, they want to follow children and families over time with a life-course lens. The students want to know what area of medicine you would recommend for them to consider for a rewarding career.

This chapter provides an orientation to developmentalbehavioral pediatrics (DBP), a young and yet maturing subspecialty of pediatrics. In this chapter we explore the origins of DBP; its emergence from historical, medical, and social imperatives; its current challenges; and opportunities for further growth.

RATIONALE FOR THE FIELD OF DBP The field of DBP emerged from the need to increase the capacity of pediatrics to understand, evaluate, treat, and manage children with developmental disabilities, mental health disorders, and those at risk for these disorders based on the presence of medical conditions or adverse social and psychological environments. These children represent a large swath

of the population in the United States and across the globe. In the United States 26% of children are at moderate or high risk for developmental-behavioral (DB) problems. Among the 18% of US children with a special health care need, over half have one or more emotional or behavioral health difficulties. Internationally, almost 53 million children under age 5 years are estimated to have a developmental, behavioral, or emotional disorder (Global Research on Developmental Disabilities Collaborators, 2018). DBP is a distinctive subspecialty developed to help address these needs.

Definition of DBP The field of DBP was defined in an application to the American Board of Pediatrics (ABP) for subspecialty certification that was approved in 1998. DBP was conceived as a pediatric subspecialty with goals of research, teaching, advocacy, and clinical work in the domains of human development and behavior. All aspects of development—cognitive, social, emotional, and physical development—were acknowledged and seen as linked to contexts of family, school, and larger communities. Although the scope of practice may overlap with child neurology, child psychiatry, and child psychology, DBP was distinct because it retained its foundation in pediatrics, maintaining interest in high-prevalence, lower-severity conditions and typical developmental trajectories as well as in children with low-prevalence, high-severity conditions. Importantly, DBP is an interdisciplinary field. The interdisciplinary perspective can be seen, for example, in the authorship of the chapters in this book; clinical practices that use interdisciplinary teams; and membership of the primary professional organization, the Society for Developmental & Behavioral Pediatrics (SDBP), that includes physicians, psychologists, nurses, and others.

Key Perspectives and Values DBP conceptualizes development and behavior as arising from biopsychosocial-ecological transactions (see Chapter 2) along a life-course timeframe (see Chapter 3). The life-course frame emphasizes that prevention and early intervention may substantially affect the developmental trajectory. DBP 1

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

acknowledges that neurobiology shapes developmental outcomes, and the social context and developmental changes shape neurobiology (see Chapter 2). DBP care is person centered and strengths based; it engages individuals in their own care, to the extent possible, recognizing their unique strengths as well as their needs. DBP clinical practice is family centered, utilizing shared decision making with families in the diagnostic and management phases. The contextual understanding recognizes the important role of culture (see Chapter 20) in the manifestations and understanding of illness and disability and in decisions about the acceptability of approaches to treatment. Cultural humility brings respect to different cultures and acknowledges socially embedded disparities in equity, diversity, and inclusion. DBP care necessitates close collaboration of the health care system with community resources and services. Many DBPs take on advocacy roles through engagement with practice associations, health systems, community-based organizations, or policymakers at local, state, and national levels. What is definitional about DBP is its unique perspective and not a set of organ systems, diagnoses, or practice settings (Schonfeld, 2008).

HISTORICAL GROUNDING FOR DBP PERSPECTIVE The DBP subspecialty emerged from the confluence of five historical trends: (1) changing concepts about children, (2) the emergence of pediatrics, (3) evolving concepts about disability, (4) evolving concepts about mental health, and (5) the development of public policy and public systems of care.

Changing Concepts of Children in Society The term child comes from the Latin infans, which means “the one who does not speak.” Throughout history and across

cultures, childhood has been an evolving concept. Childhood was defined as the period from birth to age 7 years in the Roman world and birth to age 18 years in the modern era. Table 1.1 demonstrates that child rearing has shifted perspectives over time with the rationales for the practices in Table 1.2 based on changing constructs about childhood (Haring, Sorin, & Caltabiano, 2019). Agrarian cultures typically emphasized utilitarian functions for children (i.e., their ability to work). Urbanization led to changes in the state of childhood. As women in cities went to work to support their families, the children required childcare, nutritional infant formulas, and education. Yet, community-wide resources for women and children were limited due to their lack of political power, limitations on property ownership, excessive taxation, political injustice, and corruption. In the late 17th and early 18th centuries the Enlightenment marked a change in the concept of the child. Philosophers such as John Locke (1632–1704) and Jean-Jacques Rousseau (1712–1778) emphasized the impact of experience on the developing child. This conceptualization accentuated the need to provide children with nurturing environments, education, and growth-enhancing experiences. In the last century the concept of child agency gradually has taken hold, allowing for legal strategies to promote child welfare. An early instantiation was found in 17th-century France, where children were granted “minor rights” to education, among other areas. In 1908 the New York City Health Department founded the Bureau of Child Hygiene to address child health, including prenatal care, infant mortality, school inspections, and child labor laws. The League of Nations adopted the Declaration of the Rights of the Child in 1924, the first international treaty giving specific rights to children and responsibilities to adults. The United Nations (UN) Fund for Urgency for the Children was created in 1947 to

TABLE 1.1 Evolving Views of Child Rearing  

Psychogenic Mode

Time in History

Description

1. Infanticidal

Prehistory to 4th century CE

Children worked to support the family; suffered child abuse, infanticide, and emotional abandonment.

2. Abandoning

4th century to 13th century

Physical and sexual abuse of children continued; children revered people of authority to avoid being abandoned (to monasteries, service to nobility).

3. Ambivalent

13th century to 17th century

Laws were developed to protect children; schools were established. Child still “bad.” Shaming and blaming used as discipline. Love-hate relationships between parents and child.

4. Intrusive

18th century

Parents increased love and care to their children; punishment used for bad behavior.

5. Socialization

19th century to mid-20th century

Parents offered increasing respect to their children’s wishes, even though beating and shaming discipline methods continued to socialize children.

6. Helping

Mid-20th century to present

Parents began to help their children to achieve their own goals in adult life.

7. Emotionally literate

Early 21st century

Parents raise children aware of their own emotional reactions, responsible for their own life and society.



Adapted from Haring, U., Sorin, R. & Caltabiano, N. J. (2019). Reflecting on childhood and child agency in history. Palgrave Communications, 5, 52 . https://doi.org/10.1057/s41599-019-0259-0

 

CHAPTER 1 An Introduction to the Field of Developmental-Behavioral Pediatrics

3

TABLE 1.2 Typology of Concept of Children  

Concept

Description

Innocent child, born pure

Child requires the care and protection of adults and has no agency.

Evil child due to original sin

Child was inherently evil, and severe beatings could put a child on the right path to maturity.

Snowballing child

Child takes power from the adult in an uneven relationship where tired parents give in to the child’s demands.

Out-of-control child

Child has lost control, and the adult feels powerless to express agency.

Noble/savior child

Child takes on responsibility to protect others, and adults might depend on child because of illness or substance abuse.

Miniature adult

Child as a small adult with no distinction between childhood and adulthood, so society uses child as laborer, soldier, or other occupation.

Adult-in-training

Child has “human becomings,” not as “human beings”; view is favored by developmental psychologists such as Piaget, Erikson, and Freud.

Commodified child

Child has no voice, is open to exploitation by adults.

Child as victim

Child is living in wartimes and crime, is powerless, and often not noticed as adults can only appeal to charities for help.

Agentic child

Child has support of loving adults to help guide and achieve goals; the child’s voice is respected and considered, so child acts collaboratively with adults.

Adapted from Haring, U., Sorin, R. & Caltabiano, N. J. (2019). Reflecting on childhood and child agency in history. Palgrave Communications, 5, 52. https://doi.org/10.1057/s41599-019-0259-0

promote humanitarianism and development aid and later became UNICEF (UN Children’s Fund). In 1959 the General Assembly of the UN adopted the Declaration of the Rights of the Child, which led to the International Charter of the Child Rights. All but one of the 195 UN members signed the document, and 192 ratified it. The United States signed but has not ratified it.

The Emergence of Pediatrics During ancient history, health care for children had been the province of families and midwives. Physicians avoided the care of children because of prevailing social beliefs, limited medical training about children’s health, and the poor prognosis of many childhood diseases. Health care specifically for children emerged in the late 18th and 19th centuries. The first dispensary for children in London, England, was established in 1769. The first children’s hospital, L’hôpital des Enfants-Malades, was founded in Paris in 1802. The first children’s hospitals in the United States were established in 1855 in Philadelphia and New York City (American Academy of Pediatrics [AAP], 2001). Abraham Jacobi (1830–1919), often considered the father of American pediatrics (Strain, 2004), organized the first children’s clinic at the New York Medical College in 1860. He also organized the pediatric subsections for the American Medical Association (AMA) in 1880. He collaborated on public health efforts such as providing safe milk for poor infants in New York (Mahnke, 2000). Evidence of the crystallization of the field of pediatrics was the launch of Archives of Pediatrics, the first US journal to be devoted exclusively to children, in 1884 and the first professional society, the American Pediatric Society, in 1888. Pediatricians recognized that treating childhood diseases

required public health as well as clinical interventions. In 1926 the Section on the Diseases of Children of the AMA voted in support of the reauthorization of the Sheppard-Towner Act, a modest federal maternal and child health program, on the same day that the AMA House of Delegates passed a resolution condemning the act. The conflict that followed ultimately led to the creation of the AAP in 1930 and subsequently the ABP. Public health advances promoted by pediatrics, such as sewage treatment, clean water, breastfeeding, and free medical care, all substantially reduced infant mortality and improved the health of children (Mahnke, 2000). Pediatrics has thrived since the 20th century in medical schools and children’s hospitals. With the advent of vaccines and antibiotics, the clinical focus of pediatrics is shifting away from infectious diseases to the management of chronic illnesses, including developmental disabilities, recognition of poverty and environmental causes of disease, and addressing the psychosocial determinants of health (Brosco, 2011).

Evolving Conceptualization of Disability From antiquity through the Middle Ages in Europe, disabilities were interpreted metaphysically as punishment for sin or the work of evil, as opposed to biomedically (Kanner, 1964). A major shift began when a physician, Jean-Marc-Gaspard Itard (1775–1835), undertook the education of Victor, the Wild Boy of Aveyron, an abandoned and disabled child. He applied Enlightenment principles to educate the child but achieved only incremental success (Kanner, 1964). Itard’s student, Eduard Séguin (1812–1880), known as the father of special education, further popularized this concept of a comprehensive individualized educational program for children with disabilities. Maria Montessori (1870–1952), a child

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

psychiatrist and first woman physician in Italy, based her educational philosophy on Séguin’s contributions. Center-based habilitation programs emerged, but in the second half of the 19th century they devolved into primarily custodial institutions with poor living conditions—some even practicing sterilization and euthanasia (Kanner, 1964). After World War II, families championed the cause of disabilities through the establishment of advocacy organizations (Kanner, 1964). Formed in 1950, the National Association of Parents and Friends of Mentally Retarded Children, now known as The Arc, advocated for equal rights, improved education and health care for people with disabilities, taught skills that are important for independence and employment to individuals with disabilities, and encouraged research in the area of disability (Segal, 1974). These efforts dovetailed with a changing legal landscape in public policy and education. A disability-oriented civil rights movement of the 1960s formulated a political agenda, focusing on overcoming the oppression, promoting independence and self-sufficiency, and advocating for social change. The social model of disability conceptualizes the cause of disability not as a health condition but as social, physical, and attitudinal barriers to participation in community life.

Evolving Concepts of Mental Health Disorders Mental illness was at various times attributed to environmental causes such as loss of status or money, physiologic causes, astrologic alterations, possession by the devil, moral weakness, or divine punishment. Metaphysical treatments sought to correct the individual, such as inducing catharsis, submerging patients in ice baths, inducing vomiting, or bloodletting. Social exclusion and incarceration were other approaches that continue to this day as currently over 35% of prison inmates have a history of a mental health condition. The Enlightenment dramatically altered the care of individuals with mental health disorders. Philippe Pinel (1745–1826), regarded as the father of modern psychiatry, promoted the method of moral management. The method included intense observation and conversation with individuals affected with mental disorders, supportive care such

as hypnosis and relaxation, treatment in home-like settings, and work programs (Weiner, 1992). Attractive asylums were built that promised humane and effective treatments (Weiner, 1992). The institutions became overcrowded and returned to the use of restraints and shock therapies. The institutionalized population remained very high and conditions deplorable until the National Mental Health Foundation exposed the abuses in such institutions as the Byberry Hospital in Philadelphia in the 1940s (Sareyan, 1994). In 1963 President John F. Kennedy proposed the development of comprehensive community mental health centers to reduce the number of individuals in custodial care and support the full spectrum of services from diagnosis through emergency care. Deinstitutionalization gained momentum; however, homelessness and crime are visible indications of the limitations of investment in these community-based programs.

The Development of Psychology With changing concepts in mental health emerged the field of psychology. Table 1.3 includes several notable psychologists who pioneered psychometrics and developmental assessment. These assessments allowed clinicians to characterize individual differences in development and cognitive skill. Unfortunately, the work on intelligence served as a rationalization of the eugenics movement that claimed the superiority of the white race (Kanner, 1964). While the defeat of the Nazis in World War II discredited the eugenics movement, vestiges of this thinking sadly persist to the present. Another area of psychology theorized about the origins of emotion. Sigmond Freud (1856–1939), the founder of psychoanalysis, proposed that unconscious conflicts, often thought to be related to psychosexual development, caused emotional disorders (see Chapter 3). Despite its empiric and conceptual limitations, this theory continues to hold a potent basis within psychology. Erik Erikson (1902–1994) later reconceptualized Freudian stages in psychosocial rather than psychosexual terms, which define the major tasks that children face at various points in development. This theory has heuristic value in current conceptualizations (see Chapter 3).

TABLE 1.3 Pioneers in the Psychological Assessment  

Individual

Dates

Contributions

Charles Darwin

1809–1882

• Introduced the study of human behavioral development in “A Biographical Sketch of an Infant,” a treatise on the development of movement, vision, emotions (anger, fear, and pleasure), reasoning, moral sense, and communication in his infant son.

Francis Galton

1822–1911

• Described the variations of development in human intelligence.

Alfred Binet Theodore Simon

1857–1911 1873–1961

• Designed a carefully constructed Binet-Simon test in 1905 for differentiating children with typical development vs. those needing special education.

Lewis Terman

1877–1956

• Standardized the Binet-Simon on a large sample of US children to create the Stanford-Binet test of intelligence.

Arnold Gesell

1880–1961

• Described the typical developmental milestones in “An Atlas of Infant Behavior” and advocated for the field of developmental pediatrics.











 

CHAPTER 1 An Introduction to the Field of Developmental-Behavioral Pediatrics

The roots of developmental psychology can also be traced to Charles Darwin (see Table 1.3). James Mark Baldwin (1861–1934) contributed experimental work on infant development in the area of sensation and perception. He strongly influenced Jean Piaget (1896–1980), whose intense observation of his three children formed the foundation of an integrated theory of cognitive development that proposed that development occurred in stages, in which knowledge was acquired through assimilation of environmental experiences and accommodations to those experiences (see Chapter 3). In the realm of behavior, the 19th-century physiologist, psychologist, and physician, Ivan Pavlov (1849–1936), described the “conditioned reflex” as the pairing of a neutral stimulus, such as a bell, with a motivating stimulus, such as food, to cause a physiologic reaction, such as salivation (see Chapter 4). These concepts are still used to explain the causes of phobias and design treatments. James B. Watson (1878–1958) and B.F. Skinner (1904–1990) described the ability of a reinforcing stimulus to change the probability of behaviors (operant conditioning). As described in Chapters 4, 93, and 94, operant conditioning plays a central role in behavior management of children developing typically and children with disabilities.

The Development of Psychiatry Early psychiatrists, such as Emil Kraepelin (1856–1926), offered biologic explanations and treatments for mental disorders. He brought together the tradition of the phrenologists, such as Johann Spurzheim (1776–1832), with their organic neurologic basis for behavior, and the public health advocates, such as Anthony Ashley Cooper (1801–1885), who used institutions for the care of the mentally ill. Child psychiatry has turned those concepts to child mental illness with founders such as Moritz Tramer (1882–1963) and later Leo Kanner (1894–1981). The field has been influential in the deinstitutionalization movement and in the pivot to considering both context and biology in treatment. The discovery of psychoactive medications revolutionized the practice of psychiatry. In 1952 Henri Laborit (1914–1995) discovered that chlorpromazine could calm patients with mental and emotional disorders without completely sedating them. Publication of the Diagnostic and Statistical Manual of Mental Disorders (DSM) in 1952 clarified diagnostic criteria for mental and emotional disorders. The first edition had only one pediatric diagnosis, adjustment reaction of childhood/ adolescence. Changes up to the fifth edition in 2013 have resulted in an increased number of pediatric diagnoses and increased prevalence of childhood diagnoses. While improving the quality of research, the symptom-based, atheoretic, and nondevelopmental approach of the DSM limits understanding of the complex interactions of biologic predispositions and environmental forces and the changing nature of disorders with development (Jensen & Mrazek, 2006).

Development of Public Policy and Public Systems Advances in public policy and systems have greatly influenced DBP (see Section 10).

5

Education Until the 19th century, formal education was available only to the wealthy. The US public school movement began in the mid-19th century and conceptualized education as a means to integrate poor, immigrant children and former slaves into the American culture by emphasizing moral education and industry (Kanner, 1964). Influential leaders, such as Horace Mann (1796–1859), promoted public education, which encouraged many states to pass mandatory school attendance laws. A critical legislative landmark was the Education for All Handicapped Children Act (P.L. 94–142) of 1975, which mandated a free and appropriate public education (FAPE) for all children as befitting their needs. The law also required that the education take place in the least restrictive environment, a provision specifically designed to combat institutionalization (see Chapter 114). The law has been reauthorized on several occasions and is now known as the Individuals with Disabilities Education Act (IDEA). The 1986 revision provided grants to states to develop early intervention programs for children birth to 3 years of age. Health Due to poor health outcomes of women and children, Theodore Roosevelt convened a White House conference in 1909 that resulted in the establishment of the US Children’s Bureau in 1912. The bureau evolved into the Maternal and Child Health Bureau (MCHB), included in the Social Security Act of 1935. One of its first programs was Crippled Children Services, recognition of the high prevalence and unfavorable outcomes of paralytic polio (see Chapters 115 and 116). Eventually, MCHB migrated to Health Resources and Services Administration, reflecting the shift from conceptualizing child health strictly as social service issues to public health and medical issues (Brosco, 2012). MCHB is a critical funder of DBP training and research programs. Poverty and Social Risk The post–World War II economic expansion brought an emphasis on addressing children living in poverty and experiencing other social adversities. In the 1960s Julius Richmond (1916–2008) (Fig. 1.1), a pediatrician, became the head of the Office of Employment Opportunities and launched Project Head Start, which offered free, communitybased preschool programs for children from low-income families. The objectives of Head Start were to meet the emotional, developmental, health, social, and nutritional needs of the children and to stimulate employment and empowerment of the communities in which these children lived. Positive and long-lasting impacts of high-quality early education have been documented in school-aged children (Lee, BrooksGunn, Schnur, & Liaw, 1990) to young adults (Campbell, Ramey, Pungello, Joseph Sparling, & Miller-Johnson, 2002). Dr. Richmond was later US Surgeon General (see Fig. 1.1), during which time he established benchmarks for public health, including for pregnancy outcomes, child growth, and child development.

6

SECTION 1  Foundations of Developmental-Behavioral Pediatrics

Fig. 1.2 John F. Kennedy and his siblings as children, including his older sister, with developmental and mental health conditions. It was his sister’s life experiences that informed his policies regarding facilities and training for professionals to work with individuals with developmental disabilities and mental health disorders. (From www. john-f-kennedy.net/jfksiblings.jpg)  

Fig. 1.1 Julius Richmond, MD stimulated the evolution of the field of DBP and went on to serve as Surgeon General of the United States. (From profiles.nlm.nih.gov/NN/B/D/B/K/_/nnbdbk_.jpg)  

Other important programs addressing poverty-associated risks to child development include childcare supports and home visiting. In 1990 and reauthorized in 2014, the Childcare and Development Block Grant (CCDBG) from the Administration for Children and Families provides federal support through the states to low-income families to support access to high-quality childcare for over 1 million children. The Maternal, Infant, and Early Childhood Home Visiting Program was established in 2010 to provide evidence-based parenting support to over 150,000 at-risk families as of 2019.

Disability In 1958 voluntary building standards were developed, including reserved parking spaces proximal to buildings and accessible elevators and toilet stalls, which were formalized into the Architectural Barriers Act of 1968. The Rehabilitation Act of 1973 was designed to provide job opportunities and training to adults with disabilities. Section 504 prohibited discrimination based on a disability in service availability, accessibility, or delivery in organizations that receive federal funding. This law prohibits schools from denying public education based on a student’s disability and requires accommodations in general education. The Americans with Disabilities Act of 1990 (ADA) expanded Section 504 to facilitate access to the workforce, education systems, and public domain for individuals with disabilities. In 1999 the US Supreme Court in the landmark Olmstead case held that unjustified segregation of persons

with disabilities constitutes discrimination violating the ADA. The ruling required public entities to provide communitybased services to persons with disabilities if those services are appropriate and could be accommodated in the community.

Professional Training and Research The DBP field owes much of the current infrastructure for training and research to President John F. Kennedy (Wolraich & Bennett, 2003). Kennedy’s oldest sister, Rosemary (Fig. 1.2), had a cognitive impairment and behavioral disorder, worsened by a therapeutic lobotomy, which was chronicled in the Saturday Evening Post in 1962 by a sister, Eunice Kennedy Shriver (Shriver, 1962). In 1963 President Kennedy convened the President’s Panel on Mental Retardation, highlighting the lack of programs training professionals to work with children and adults with what we then called mental retardation. The panel proposed the development of university-affiliated faculties (UAFs) designed to support training research and clinical services to benefit individuals with disability. Initial federal funding supported 18 UAFs and 12 research centers associated with major universities. After their construction, the UAFs continued as university-affiliated programs (UAPs). A UAP’s mission included moving research and technology forward, improving government policies, measuring outcomes, developing and evaluating social and community programs for individuals with disability, training clinicians and researchers involved in disability care and science, and communicating with the community to determine needs.

 

CHAPTER 1 An Introduction to the Field of Developmental-Behavioral Pediatrics

The programs continue to provide a platform for interdisciplinary collaboration for training and research. The current UAPs funded through the Administration for Community Living are now known as University Centers for Excellence for Developmental Disabilities (UCEDD). Others funded by the MCHB and the Autism CARES Act are now known as Leadership Education in Neurodevelopmental and Related Disabilities (LEND) programs. Together these programs serve to train professionals to work with individuals with disabilities and promote collaboration with communitybased systems, individuals with disabilities, and their family members to ensure that services are responsive to the needs of individuals with disabilities. Additionally, Intellectual and Developmental Disabilities Research Centers (IDDRC) are funded by the National Institute of Child Health and Human Development and are charged with using basic, clinical, and translational research to understand the causes and provide treatments for disabilities. All of these programs are members of the Association of University Centers on Disability, an advocacy network for disabilities and the programs themselves.

EMERGENCE OF THE DBP FIELD Rise of DBP Increasing Prevalence The prevalence of disabilities and mental health conditions rose rapidly in the second half of the 20th century. Advances in medical science and technology simultaneously reduced the impact of infectious diseases and nutritional deficiencies, increased the survival of once fatal developmental conditions, and led to a higher prevalence of disability. For example, because of advances in neonatal intensive care unit (NICU) technology from 1960 to 2000, the limits of viability dropped from 28 weeks to 24 weeks and survival of 1-kg birthweight infants rose from 5% to 95% (Philip, 2005). However, survivors remain at high risk for multiple developmental and behavioral disorders. Similarly, advances in cardiac surgery have increased life expectancy for individuals with Down syndrome from 10 years in 1960 to 47 years in 2007 (Presson et al., 2013).

Increased Awareness The second half of the 20th century witnessed a substantial increase in the number of families bringing behavioral and academic concerns to pediatricians (Haggerty & Friedman, 2003). Factors included increased parental awareness in the baby boomer generation, changes in family structure, and increasing expectations for children (Haggerty & Friedman, 2003). Higher education became critical to occupational attainment and financial success in life. In the 1900s rates of high school graduation were near 25%, but in 2016 they were greater than 90%.

Evolving Pediatric Practice In 1972 the AAP issued a policy statement emphasizing the pediatrician’s role in promoting optimal growth and

7

development through family support and developmental and behavioral surveillance and screening (AAP, 1972). Practicing pediatricians reported that they did not have the necessary skills to fulfill this recommendation (Dworkin, Leviton, & Levine, 1979; Shonkoff, Dworkin, Leviton, & Levine, 1979). In 1978 and again in 2000 the AAP Task Force on Pediatric Education raised concerns that medical education in the United States was not providing sufficient teaching and training around biopsychosocial aspects of child health and child development to support future roles for pediatricians in managing emotional disorders, learning problems, and chronic conditions (Future of Pediatric Education II, 2000; Haggerty & Friedman, 2003). Recommendations included an improved pediatrics curriculum to raise the capacity for developmental and behavioral assessment.

Establishment of Training Programs The AAP established the Section on Mental Health in 1949, which became the Section for Child Developmental in 1960 (Haggerty & Friedman, 2003). The only universities offering fellowship training in the 1950s were the Yale Child Study Center, the University of Syracuse, Johns Hopkins University, and Children’s Hospital of Philadelphia. Several of the major university centers subsequently began fellowship training in the next decade (Table 1.4). Beginning in 1959, the William T. Grant Foundation provided grant support for behavioral pediatrics training programs in Baltimore and Philadelphia and expanded in the 1970s to 11 programs across the country (Carey, 2003). The MCHB provided financial support for DBP training through the UAPs and later directly through DBP training grants. In 1988 the AAP Section on Child Development became the Section on Developmental and Behavioral Pediatrics. An early contentious issue was whether training in behavioral pediatrics should most appropriately fall under child psychiatrists or pediatricians (Haggerty & Friedman, 2003). The emerging consensus was that pediatrics, rather than child psychiatry, was more suitable for this training for many reasons: its emphasis on the full range of issues from normal function to severe disorder, the ability to understand and intervene in the complex interplay of psychosocial factors and physical health, and the potential for pediatrics to coordinate the care of psychosocial issues and behavioral health with routine health supervision and treatment of physical disorders (Haggerty & Friedman, 2003). In 1997 the Residency Review Committee of the Accreditation Council of Graduate Medical Education (ACGME) required general pediatric residencies to have 1-month dedicated rotation and a longitudinal component, the equivalent of a second month, spread throughout residency. A second contentious issue was the balance between a focus on development and in particular developmental disabilities versus behavior. One subgroup, centered at the John F. Kennedy Institute, now called Kennedy-Krieger Institute, emphasized developmental disabilities. This group founded the SDBP in 1978, focusing on the issues of children with developmental disorders. The society created a Section on Children with Disabilities within the AAP in 1990.

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

TABLE 1.4 Early Centers for DBP in 1960–1970  

University Center

Contributions and Features

University of California– San Francisco

• Pediatric residents trained in mental health issues. • Early fellowship training program that emphasized the importance of family in child development.

Harvard University

• Julius Richmond, who was an architect of Head Start and who became US Surgeon General, encouraged pediatricians to establish expertise in development and behavior. • Pioneers included Melvin D. Levine and Allen Crocker, editors of previous editions of this textbook.









Rochester University

• Robert Haggerty and Stanford Friedman began training fellows in behavioral pediatrics and adolescent medicine.

Yale University

• Arnold Gesell founded Yale Child Study Center. • Milton Senn and Albert Solnit brought psychoanalytic focus.







Children’s Hospital of Philadelphia

• Henry Cecil began program in psychological pediatrics, funded by William T. Grant Foundation. William B. Carey, editor of previous editions of this textbook, was first fellow.

Johns Hopkins University

• Leo Kanner and Leon Eisenberg began fellowship training through Department of Psychiatry. • Kennedy Center focused on children with disabilities. Arnold Capute was the first fellow.







Establishment of a Journal and DBP Society The Journal of Developmental and Behavioral Pediatrics (JDBP) was established in 1980 and has provided a prominent forum to present research and commentary on topics related to the field. The SDBP was first established in 1982 as the Society of Behavioral Pediatrics (SBP) but was restricted in name by the other society. In 1994 it changed its name to the present form (Society for Developmental and Behavioral Pediatrics [SDBP]) in recognition of the substantial overlap of developmental and behavioral issues in childhood and the scope of practice of its members. Shortly after its formation, the new organization applied for and was granted editorial sponsorship of JDBP. The hyphenated term developmental-behavioral pediatrics was chosen for use in the title to represent the first comprehensive textbook in the field, published in 1983, to recognize the integral and interacting nature of those two parts (Hansen, 2010; Levine, Carey, Crocker, & Gross, 1983).

Path to Board Certification Within pediatrics, board certification for DBP was a priority to provide recognition of its distinctive scope of practice and to assure the public about the quality of legitimate practitioners (Haggerty & Friedman, 2003; Perrin, 2000). The two professional societies, with overlapping interests reflective of the tension between a focus on developmental disabilities versus DBP, chose to follow disparate paths for certification through the American Board of Medical Specialties (ABMS). The SDBP made the first application for subspecialty board certification. Separately, the Society for Behavioral Pediatrics Executive Council voted to pursue board certification in 1991. Efforts to combine these two applications into a single application, given the overlapping scope of practice of the two groups failed. The ABP was initially hesitant to support a subspecialty in DBP because of concerns that the new specialty would overlap with the practice of general pediatrics and thereby reduce the responsibilities of general pediatricians. However, the ABP heard strong

support from the AAP Section on DBP and from numerous academic and community pediatricians. Many general pediatricians supported the training of subspecialists who would teach, train, study, and practice child development and behavior. In 1994 the ABP declared that they would support the creation of the DBP subspecialty. However, the concept encountered resistance from the American Board of Psychiatry and Neurology (ABPN) because of concerns that the role of the developmental-behavioral pediatrician was not sufficiently distinct from that of the child psychiatrist. The ABP stipulated that a subspecialty must improve upon the care of children, supplement the role of the general pediatrician, and teach the subspecialty field to trainees and other professionals before it could be considered for subspecialty status (Stockman, 2000). The SDBP addressed the ABPN concerns in a subsequent application. Training in child neurology and child psychiatry was integrated into the training requirements at the time that DBP was recognized as a distinct subspecialty. Participation of psychologists in training was also required to demonstrate the commitment to an interdisciplinary field. In 1999 DBP was approved as a subspecialty by the ABMS. Board certification in DBP was first granted in 2002. The SDBP subspecialty ultimately sought primary certification from the ABPN, calling its field “neurodevelopmental disabilities (NDD).” The ABP supported the application and cosponsored subspecialty certification during the initial years. NDD was also recognized as a subspecialty by ABMS in 1999. Training in child neurology is required for preparation for board certification in NDD. Board certification for NDD was first granted in 2001. As of 2019, 904 individuals had been certified in DBP in the United States. In 2020 117 fellows were in training within 43 programs. As of 2019, 55 individuals had been board certified by the ABPN in NDD. In 2020 26 fellows were in training in 8 NDD training programs. By way of contrast, in 2020 941 trainees in child psychiatry were enrolled in 141 programs.

 

CHAPTER 1 An Introduction to the Field of Developmental-Behavioral Pediatrics

FUTURE OPPORTUNITIES AND CHALLENGES As DBP moves forward, the field is confronting several challenges. First is sustainability. DBP clinical work requires extensive data gathering and integration, resulting in high levels of uncompensated time and service (Bridgemohan et al., 2018). Results include long wait times for new appointments and high levels of clinician burnout. Revenue models for DBP that share population risk, reimburse time, partner with cross-sector service systems (e.g., schools or disability system), or capture value through interdisciplinary teams all hold potential for improving reimbursements. Attracting new professionals is critical to strengthening the field. Filling available pediatric training spots has been challenging (Macy, 2021). Many efforts are underway to attract trainees to the field by increasing awareness of the field among undergraduate and medical students, supporting interested trainees to attend professional meetings, and assigning mentors as soon as a trainee declares an interest. If the workforce remains limited, then reimagining how the limited supply is utilized may be required. Possibilities include focusing subspecialty practice on children with high complexity, reducing follow-up to initial consultations, collaborating with general pediatricians to identify and manage children with low severity conditions, and teaming with interdisciplinary partners to reapportion aspects of diagnosis and management (Stein, 2015; Weyand, 2020). The field is challenged to produce distinctive scholarship. Currently only a small number of DBP faculty seek research career development and study grants from intramural, foundation, SDBP, or National Institutes of Health sources. In 2011 the MCHB funded the multisite DBP Research Network to further collaborative field research. Senior faculty support fellows and junior faculty in settings such as the SDBP Research Scholars Symposium started in 2014. In 2020 the complex attention-deficit/hyperactivity disorder guidelines were the first evidence-based practice effort originating from within the DBP field (Barbaresi et al., 2020). Future research must refine diagnosis and treatment and define the value of the DBP perspective in clinical and academic work (Sandler, 2019). Finally, DBP must broaden the diversity of providers to improve health equity nationally and internationally. MCHB values diversity in trainee recruitment and training. The International Special Interest Group of SDBP, started in 2011, promotes optimal child development and care for children with disabilities both internationally and among international immigrants, refugees, and adoptees. SDBP and MCHB have supported efforts to develop collaborative educational efforts across low, middle, and high resourced countries, called international Collaborative Office Rounds (iCOR) (Kiing et al., 2021). Many cross-cultural academic collaborations have been fostered through engagement in the International Developmental Pediatrics Association, which had its first meeting in Turkey in 2015. To foster diversity in the United States, the SDBP has developed the Diversity Equity and Inclusion Committee in 2020 to prioritize antiracism and

9

social justice for the field. These efforts integrate the field’s equity advocacy orientation into actual diverse DBP membership with skill transformation to create a more just future.

CONCLUSION DBP is a dynamic and multifaceted pediatric subspecialty that would be an ideal career choice for the medical students described in the opening vignette. DBP has become a unique and impactful field within pediatrics that makes a difference for children, families, and society. A rich experience awaits you, the reader, as you progress through this text, whether you are interested in clinical care, teaching, scholarship, advocacy, or program administration. We invite you to explore further what this field can contribute to your own career path in the following chapters.

REFERENCES American Academy of Pediatrics (1972). Bulletin of pediatric practice. American Academy of Pediatrics. American Academy of Pediatrics Historical Archives Advisory Committee. (2001). Committee report: American pediatrics: Milestones at the millennium. Pediatrics, 107(6), 1482–1491. Barbaresi, W., Campbell, L., Diekroger, E., Froehlich, T. E., Liu, Y. H., O’Malley, E., Pelham, W. E. Jr., Power, T. J., Zinner, S. H., & Chan, E. (2020). Society for Developmental and Behavioral Pediatrics clinical practice guideline for the assessment and treatment of children and adolescents with complex attentiondeficit/hyperactivity disorder. Journal of Developmental and Behavioral Pediatrics, 41(Suppl 2S), S35–S57. https://doi. org/10.1097/DBP.0000000000000770. PMID: 31996577. Bridgemohan, C., Bauer, N. S., Nielsen, B. A., et al. (2018). A workforce study on developmental-behavioral pediatrics. Pediatrics, 141(3), e20172164. Brosco, J. P. (2011). Classics in pediatrics: A 100-year history of pediatrics in the United States. Archives of Pediatrics and Adolescent Medicine, 165(12), 1064–1065. https://doi. org/10.1001/archpediatrics.2011.1070. PMID: 22147773. Brosco, J. P. (2012). Navigating the future through the past: The enduring historical legacy of federal children’s health programs in the United States. American Journal of Public Health, 102(10), 1848–1857. Campbell, F. A., Ramey, C. T., Pungello, E., Joseph Sparling, J., & Miller-Johnson, S. (2002). Early childhood education: Young adult outcomes from the abecedarian project. Applied Developmental Science, 6(1), 42–57. Carey, W. B. (2003). History of developmental-behavioral pediatrics. Journal of Developmental and Behavioral Pediatrics, 24(3), 215. Dworkin, P. H. S., Leviton, A., & Levine, M. D. (1979). Training in developmental pediatrics. How practitioners perceive the gap. American Journal of Diseases of Children, 133, 709–712. Future of Pediatric Education II. (2000). Organizing pediatric education to meet the needs of infants, children, adolescents, and young adults in the 21st century. Pediatrics, 105(1), S163–S212. Global Research on Developmental Disabilities Collaborators (2018). Developmental disabilities among children younger than 5 years in 195 countries and territories, 1990–2016: A systematic analysis for the Global Burden of Disease Study 2016. The

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Lancet. Global Health, 6(10), e1100–e1121. doi: 10.1016/S2214109X(18)30309-7. Epub 2018 Aug 29. Erratum in: The Lancet. Global Health, 2018 6(12), e1287. PMID: 30172774; PMCID: PMC6139259. Haggerty, R. J., & Friedman, S. B. (2003). History of developmentalbehavioral pediatrics. Journal of Developmental and Behavioral Pediatrics, 24(1), S1–S18. Hansen, R. L. (2010). Magical history tour of the Society for Developmental and Behavioral Pediatrics: Reflections on deletions, slashes, hyphens, and developmental context. Journal of Developmental and Behavioral Pediatrics, 31(5), 441–448. https:// doi.org/10.1097/DBP.0b013e3181e04722. PMID: 20535082. Haring, U., Sorin, R., & Caltabiano, N. J. (2019). Reflecting on childhood and child agency in history. Palgrave Communications, 5, 52. https://doi.org/10.1057/s41599-019-0259-0. Jensen, P. S., & Mrazek, D. A. (2006). Introduction. In P. S. Pensen, P. Knapp, & D. A. Mrazek (Eds.), Toward a new diagnostic system for child psychopathology: Moving beyond the DSM (pp. 1–10). Guilford Publications. Kanner, L. (1964). A history of the care and study of the mentally retarded. C.C. Thomas. Kiing, J. S. H., Feldman, H. M., Ladish, C., Srinivasan, R., Donnelly, C. L., Chong, S. C., & Weitzman, C. C. (2021). International Interprofessional Collaborative Office Rounds: Addressing childen’s developmental, behavioral, and emotional health using distance technology. Frontiers in Child Health. In press. Lee, V. E., Brooks-Gunn, J., Schnur, E., & Liaw, F. -R. (1990). Are head start effects sustained? A longitudinal follow-up comparison of disadvantaged children attending head start, no preschool, and other preschool programs. Child Development, 81(2, Special Issue on Minority Children), 495–507. Levine, M. D., Carey, W. B., Crocker, A. C., & Gross, R. T. (Eds.), (1983). Developmental-behavioral pediatrics. W.B. Saunders Co. ISBN 10:0721657443/ISBN 13:9780721657448. Macy, M. L., Leslie, L. K., Turner, A., & Gary, L. F. (2021). Growth and changes in the pediatric medical subspecialty workforce pipeline. Pediatric Research, 89, 1297–1303. https://doi. org/10.1038/s41390-020-01311-7. Mahnke, C. B. (2000). The growth and development of a specialty: The history of pediatrics. Clinical Pediatrics, 39(12), 705–714. Perrin, E. C., Bennett, F. C., & Wolraich, M. L. (2000). Subspecialty certification in developmental-behavioral pediatrics: Past and present challenges. Journal of Developmental & Behavioral Pediatrics, 21(2), 130–132. Philip, A. (2005). The evolution of neonatology. Pediatric Research, 58, 799–815. https://doi.org/10.1203/01. PDR.0000151693.46655.66. Presson, A. P., Partyka, G., Jensen, K. M., Devine, O. J., Rasmussen, S. A., McCabe, L. L., & McCabe, E. R. (2013). Current estimate of Down syndrome population prevalence in the United States. Journal of Pediatrics, 163(4), 1163–1168. https://doi.org/ 10.1016/j.jpeds.2013.06.013. Epub 2013 Jul 23. PMID: 23885965; PMCID: PMC4445685. Sandler, A. D. (2019). Value-driven care in developmentalbehavioral pediatrics, part 2: Measuring quality and meeting the challenge. Journal of Developmental and Behavioral Pediatrics, 40(6), 479–488. https://doi.org/10.1097/ DBP.0000000000000686. PMID: 31107770.

Sareyan, A. (1994). The turning point: How persons of conscience brought major change in the care of America’s mentally ill. Herald Press. Schonfeld, D. J. (2008). Back to the future: A constructivist perspective of developmental-behavioral pediatrics. Journal of Developmental and Behavioral Pediatrics, 29(1), 69–71. https:// doi.org/10.1097/DBP.0b013e31816b21a3. PMID: 18301322. Segal, R. (1974). The national association for retarded citizens. 2007. http://www.thearc.org/history/segal.htm Shonkoff, J. P., Dworkin, P. H., Leviton, A., & Levine, M. D. (1979). Primary care approaches to developmental disabilities. Pediatrics, 64, 506–514. Shriver, E. K. (1962). Hope for retarded children. Saturday Evening Post, 234, 71. Stein, R. E. (2015). Are we on the right track? Examining the role of developmental behavioral pediatrics. Pediatrics, 135(4), 589–591. https://doi.org/10.1542/peds.2014-3274. Epub 2015 Mar 16. PMID: 25780072. Stockman, J. A. 3rd. (2000). Developmental-behavioral pediatrics: The American Board of Pediatrics’ perspective. Journal of Developmental and Behavioral Pediatrics, 21(2), 133–135. doi: 10.1097/00004703-200004000-00008. PMID: 10791482. Strain, J. E. (2004). Celebrating 75 years founding members laid strong foundation for academy. AAP News, 180. Weiner, D. B. (1992). Philippe Pinel’s “memoir on madness” of December 11, 1794: A fundamental text of modern psychiatry. American Journal of Psychiatry, 149(6), 725–732. Weyand, A. C., & Freed, G. L. (2020). Pediatric subspecialty workforce: Undersupply or over-demand? Pediatric Research, 88(3), 369–371. https://doi.org/10.1038/s41390-020-0766-0. Epub 2020 Jan 20. PMID: 31958801. Wolraich, M. L., & Bennett, F. C. (2003). History of developmentalbehavioral pediatrics [comment]. Journal of Developmental and Behavioral Pediatrics, 24(3), 215–216. author reply 216.

WEBSITE REFERENCES https://www.aucd.org/template/page.cfm?id=156 https://thearc.org/about-us/history/ https://www.humanium.org/en/childrens-rights-history/ http://www.eunicekennedyshriver.org/articles/article/148 www.childhealthdata.org: Child and Adolescent Health Measurement Initiative. 2013. Risk of Developmental or Behavioral Problems State Ranking Map. Kidsdata.org 1: Population Reference Bureau, analysis of data from the National Survey of Children’s Health and the American Community Survey (Jan. 2021). Kidsdata.org 2: Data Resource Center for Child and Adolescent Health, National Survey of Children with Special Health Care Needs (Dec. 2012)

2 The Biopsychosocial Model: Understanding Multiple, Interactive Influences on Child Development and Behavior Megan M. Julian and Julie C. Lumeng

VIGNETTE Justin, a 6-year-old boy, and his mother, Cynthia, come into the office for a new-patient appointment. Upon reviewing his chart, you see that Justin was born at 34 weeks of gestation and had exposure to nicotine in utero. As soon as you enter the room, tension is clear; Justin appears withdrawn and ashamed, and Cynthia appears overwhelmed and frustrated. You ask, “What brings you to the clinic today?” Cynthia says harshly, “Justin is out of control. If he doesn’t get his way, he hits and yells. I don’t know what to do with him. His school calls me a few times a week to pick him up because of his behavior. I can’t keep doing this—I’m going to lose my job if I keep having to call off because of him.” Justin sits quietly, looking down to the floor as you talk. You learn that Justin has been struggling for about 3 years. Cynthia’s social support is limited—she is a single mother, following a contentious separation from Justin’s father 2 years ago. Justin’s father has not been in regular contact. Cynthia becomes more emotional as you ask about the circumstances of their separation. She shares that her relationship with Justin’s father became abusive. Justin had witnessed many physical and verbal altercations between them.

OVERVIEW Children’s behavior and development is impacted by a plethora of biologic, psychological, and social factors. As our understanding of the brain and the biology of behavior advances, so too does the window through which we understand clinical scenarios such as that of Cynthia and Justin in the opening vignette. The early years—from pregnancy through early childhood—are characterized by rapid development, with many neural structures being built and organized during this time. In these years, experience is most able to “get under the skin” to shape a child’s later development. Processes such as neural pruning and DNA methylation (see Chapter 24) allow experience to alter a child’s developing brain, such that brain architecture itself is built through the dynamic interaction of biology and environment. In this chapter we review how nature and nurture interact in meaningful ways for a range of important outcomes and the implications for clinical care.

MAJOR THEORIES Biology influences behavior and environment, and behavior and environment influence biology throughout development. Children are directly and indirectly influenced by both their proximal context (e.g., relationships with their caregivers) and broader societal factors (e.g., neighborhood violence, community-wide belief systems). Children’s development is the product of the accumulation of everyday interactions and experiences as well as the broader community and cultural context in which they are raised. While major events (e.g., changes in family structure) and circumstances (e.g., family resources) are important to children’s development, so too are the minute interactions that make up day-to-day life. The multilevel and transactional influences on children’s development have been described in two key theoretical models.

Bronfenbrenner’s Ecological Systems Theory Urie Bronfenbrenner’s ecological systems theory (Bron fenbrenner, 1979) proposes there are multiple levels of influence on a child’s development, spanning from relationships with caregivers to systems such as schools and workplaces, to events in the broader society (Fig. 2.1). The microsystem describes the direct relationships and interactions children have, such as with caregivers, siblings, and peers. These individuals directly influence the child by scaffolding development, providing opportunities to play and learn, and providing emotional support to children. The microsystem also contains structures with which the child interacts, such as school, neighborhood, childcare settings, and family. Children both influence and are influenced by these relationships and structures (e.g., a child’s temperament may contribute to setting the tone of a classroom). The mesosystem describes interaction among the structures that are in the microsystem (e.g., bidirectional influences between neighborhoods and schools). The exosystem consists of larger social systems that impact structures in the microsystem (e.g., community-based family resources or parental work schedules). Children do not directly interact with the exosystem, but they experience the impact of changes in these social systems. The macrosystem is the outermost layer of a child’s environment and is defined by cultural values, customs, and laws that influence the ways that the inner layers function. The chronosystem captures the influence of time on children’s development, reflecting both developmental processes that take place over time and the ­

For additional material related to the content of this chapter, please see Chapters 3, 5, 15, and 24.

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

Mecrosystem

ral ltu Cu lues Va

Cu

sto me

Exosystem

Loc Poli al tics

La ws

Friends

Neighborhood

Child

Daycare

Family

ic om on Ec stem Sy

Microsystem

s

ss Ma dia Me

e P ar wo are elf rk nts l W ices pla ’ a i c rv Mesosystem ce So Se Interactions between systems in the microsystem

Caregivers

School

Time

Chronosystem Time since life events Developmental state when life events occur Sociohistorical conditions

Fig. 2.1 Bronfenbrenner’s ecological systems theory describes the multiple interacting levels of analyses that impact the child at any given time and over the course of development.  

changing influence of events (e.g., a traumatic event) based on their duration and the developmental stage in which they occur.

Sameroff’s Transactional Model Arnold Sameroff ’s transactional model builds on Bronfenbrenner’s ideas about the bidirectionality of effects on children’s development. It discusses the processes that take place between parents and children in everyday interactions and over time (Sameroff, 2009). This model grew out of observations that many risks, such as premature birth or birth complications, were associated with observable developmental problems only for some children—most often those children with additional social risks (e.g., low socioeconomic status). In other words, children’s environments moderate the effect of early biologic risks on children’s development. Nature and nurture are viewed as inherently inextricable; genes are expressed dependent on one’s environment, and parents respond differently to children based on the child’s inherent biologic characteristics. An illustration of this cascading effect in a mother-child dyad is shown in Fig. 2.2A. A child’s characteristics impact parenting, and parenting impacts children’s development; these bidirectional cascades of influences continue over time across development. Critically, parents’ behaviors in response to children are driven by their interpretations and the meaning they make from the behavior. For instance, a parent’s anxious handling may arise because of her perception about the child’s birth complications (e.g., “He’s fragile and I might hurt him by accident”); a parent may disengage from a child with a difficult temperament because of the meaning she attaches to

the child’s fussy behavior (e.g., “Nothing I do settles him, he must not want me”). Understanding these processes provides several potential ports of entry for intervention in the parent-child relationship (i.e., the three Rs: remediation, redefinition, reeducation); changing any of these ports of entry has the potential to change the sequelae that follow (see Fig. 2.2B). Remediation refers to directly changing the child. If a child has gastroesophageal reflux that contributes to a difficult temperament, treating the reflux might reduce the child’s fussiness, and in turn, the parent may show more warmth and sensitivity with the child. Such treatment would be indicated when the child’s condition can be effectively treated. However, it is not always feasible to offer treatment, such as when the child’s condition is nonmodifiable or when there are no target symptoms that can be identified in the child that could be changed (e.g., with medical treatment or developmental therapies). Redefinition is changing a parent’s interpretations of, attitudes toward, or beliefs about the child. A clinician may help parents to think about what their child is thinking and feeling during a challenging moment, help parents to reinterpret their child’s behavior (e.g., aggressive behavior might reflect a child’s inability to put words to strong feelings), or reinterpret their role in an interaction with their child (e.g., being a supportive and warm presence can be helpful to your child, even if he doesn’t stop crying right away). This work often happens through parent-child psychotherapy, but modest redefinition can also occur through brief clinician visits. Reeducation refers to directly changing the parents’ skills or knowledge and is most effective when parents’ attitudes and beliefs about the child are healthy, but their parenting approach could be improved (e.g., by providing information about how to position a baby with a physical disability). Remediation, redefinition, and reeducation are inherently intertwined due to the dynamic nature of bidirectional influences in children’s development; a change in one domain will likely have cascading effects in other domains.

DEVELOPMENT OF BEHAVIORAL PROBLEMS AND PSYCHOPATHOLOGY A combination of biologic and environmental factors contributes to the development of behavioral problems and psychopathology. For conditions such as attention-deficit/ hyperactivity disorder (ADHD; see Chapter 48), heritability estimates are 50% or higher, though genetic influences typically interact with environmental influences in predicting outcomes. Early in infancy, children show differences in temperament, which are based on biology and can be considered the early roots of eventual psychiatric diagnoses. The dopamine D4 receptor (DRD4) and the serotonin transporter receptor (5-HTTLPR) are linked to aspects of temperament, including attention, novelty seeking, approach, and inhibition; but the effects of genes are dependent on environmental factors such as social-emotional experience (e.g., less sensitive parenting, child maltreatment). Thus even

 

CHAPTER 2 The Biopsychosocial Model

Anxious, Uncomfortable, or Inconsistent Parenting

Disengaged Parenting, Conflict

Parent

Reeducation

Disengaged Parenting, Conflict

Change parent behavior, skills, knowledge

te

rp

Poor Language Skills, Poor Social Skills, Challenging Behavior

In

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Difficult Temperament, Poor SelfRegulation

Birth Complications

re

ta

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13

Remediation Change Child

Time (A)

Redefinition Change meaning, interpretation

Difficult Temperament, Poor SelfRegulation

(B)

Fig. 2.2 Sameroff’s transactional model shows the example of interacting forces impacting the child over time (A) and strategies for intervention to change the course of development (B).

n

l Vu

Stress Diathesis

Outcome

i

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i nd

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Worse

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(B)

Environment

Fig. 2.3 Contrasting the diathesis-stress model (A) and the differential susceptibility model (B). In the diathesis-stress model, the unfavorable environment impacts vulnerable children only. In the differential susceptibility model, environmental quality impacts all children and the orchids more noticeably than the dandelions.  

when the underlying risk is predominantly biologic, parenting and other environmental influences can either mitigate or amplify that risk. Children who are more vulnerable— whether from their genetic risk or temperament—are likely to be influenced more than the less vulnerable by both positive and negative experiences (Slagt et al., 2016). Abusive or neglectful parenting, poverty, premature birth, and parental psychopathology all place children at a higher risk for behavioral problems and psychiatric diagnoses, with higher risk for those children who experience multiple risk factors (Evans et al., 2013). Neural plasticity, neural pruning, and epigenetic processes drive these environmental effects on children’s later outcomes. Two prominent theories have been developed to account for the ways that genetic and environmental factors interact.

Diathesis-Stress Model This model suggests that some individuals are more vulnerable to the impacts of stress than others (Zuckerman, 1999) (Fig. 2.3A). Diatheses—hereditary or constitutional predispositions—might include biologic, genetic, temperamentrelated, or cognitive factors that predispose a child to being

vulnerable to the influences of stress. Stresses might include discrete life events (e.g., divorce), chronic stresses (e.g., financial strain), or an accumulation of more minor daily stresses (e.g., school assignments). In a developmentally supportive environment, this model suggests that both resilient and vulnerable individuals are likely to do well. In a challenging environment, resilient individuals would do well, whereas vulnerable individuals would not. Those who have greater predispositions to psychopathology may be overwhelmed by a small to moderate environmental stress, whereas individuals with lower predispositions may withstand higher levels of environmental stress without apparent effects on their functioning.

Differential Susceptibility Theory This theory posits that individuals vary in their plasticity, or their level of susceptibility to environmental influences (Belsky et al., 2007) (see Fig. 2.3B). Differential susceptibility can contribute to positive and negative outcomes. Some children, sometimes referred to as “orchids,” are very sensitive to their environment. When they are in an environment that is highly supportive of their development and well-being,

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

they thrive; however, when they are in an environment that is unsupportive of their development, they struggle. Other children, sometimes referred to as “dandelions,” are less susceptible to environmental influences and will do roughly the same regardless of how supportive their environment and relationships are. Children can fall anywhere on the spectrum between these two extremes. This degree of plasticity has been linked to differences in genetic markers, including 5-HTTLPR, DRD4, and BDNF (Belsky et al., in press). A child’s susceptibility may differ depending on specific environmental influences and the specific outcome being considered.

CAREGIVER-CHILD RELATIONSHIPS Primary caregivers impact a child’s biology through their interactions with the child. The interactions a child has with, or supported by, the caregiver leave a lasting mark on the child’s genome (see Chapter 24) and brain structure. Through neural pruning, a child’s neural connections are either reinforced or pruned based on their experiences. Epigenetic effects, including those related to the experience of early caretaking behavior, are also active during this developmental period (Roth & Sweatt, 2011). Caregivers scaffold infants’ cognitive, social, behavioral, emotional, and physical development. Young children are not developmentally capable of self-regulation, so caregivers play a crucial role in helping children cope with negative affect by reading their cues, anticipating transitions, redirecting their attention, and responding promptly to their needs. As children gain experience with their caregivers coregulating their emotions, they begin to internalize these regulation strategies and gradually develop the ability to regulate independently. Sensitive and responsive parenting promotes positive child outcomes in domains, including attachment, cognitive development, social skills, and emotion regulation. A sensitive and responsive caregiver is tuned into the child’s feelings and needs, and responds promptly with actions that are in tune with the child’s feelings and needs throughout everyday activities (e.g., feeding, play, bathing, changing diapers or clothes). Attachment theory (see Chapter 3) posits that internal working models, which are mental representations of relationships, serve as the foundation of attachment relationships (Bowlby, 1969). Parents come into the role of parents with a long history of experiences in caregiving relationships, which could include the experience of sensitive parenting, maltreatment, dismissive caregivers, or separation and loss. As parents, our own upbringing forms our cognitive schemas for parenting and the interpretations we make with regard to children’s behavior, so we are likely to recapitulate the style of parenting that we experienced. For instance, when a child is crying, a parent who experienced sensitive and responsive parenting as a child might interpret that the child is having a hard time and needs help, whereas a parent who experienced emotionally dismissive parenting as a child might interpret the same behavior as reflective of the child “being dramatic.” Parents’ interpretations

and attributions guide their parenting behavior, which then shapes the child’s interactions and behavior with the parents and ultimately shapes the child’s own attachment quality (Table 2.1).

CHILD STRESS AND TRAUMA Even at young ages, many children are exposed to levels of stress and trauma that can impact their development. Positive stress is considered a normal part of healthy development (e.g., starting at a new daycare, medical procedure). Heart rate, blood pressure, and stress hormones temporarily increase. Tolerable stress involves greater stress response activations, but stress elevations are still time limited with recovery once the acute stressor passes; events such as disasters, the death of a loved one, or divorce could be tolerable stressors. Caregiving relationships are key in buffering the effect of these stressors, making stressors more manageable and biologic stress responses subside. Toxic stress involves strong, frequent, and prolonged stress system elevations that can cause lasting changes in neurobiologic systems, having a detrimental effect on later physical and mental health (see Chapter 15). Children who have experienced trauma commonly have aggressive behavior, irritability, and emotional withdrawal. Many children will reenact the trauma they have experienced or witnessed either in vivo (e.g., toward their caregiver or peers) or through play. Often these stresses happen in the context of caregiving relationships (e.g., child abuse or neglect, caregiver mental illness or substance use disorder), which both magnifies the felt experience of stress and lessens the potential for buffering of the stress through relationships. When stressors are more intense, prolonged, repeated, and unaddressed, they are likely to become toxic. When they occur in the context of supportive social-emotional relationships, early detection, and effective intervention, it is likely that these stressors will be tolerable. Social determinants of health are key contributors to stressors and traumas that might lead to chronic elevations in their biologic stress response systems and impact children’s development. Families who experience structural racism, discrimination, or economic oppression often experience chronic elevations in their biologic stress response systems that may contribute to a pervasive sense of lack of safety and security. Parents who are experiencing these stressors may understandably have less psychological capacity to support their children, as it is exponentially harder to help a child feel safe and secure when you as a parent do not feel safe and secure. A child’s relationship with a caregiver serves a particularly critical role when the child is experiencing stress. When children have a relationship with a caregiver that is secure, supportive, and attuned, the caregiver’s ability to coregulate them supports their ability to withstand stress. On a biologic level, the presence of such a caregiver modulates a child’s behavioral and biologic response to stress, including an endocrine stress response (i.e., hypothalamic-pituitaryadrenal [HPA] axis activity; Gunnar & Quevedo, 2007). Prior

 

CHAPTER 2 The Biopsychosocial Model

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TABLE 2.1 Psychological and Behavioral Sequelae of Secure and Insecure Attachment Relationships  

Secure Attachment Relationship

Insecure Attachment Relationship

Accepting of their children Recognize concerns but not overwhelmed In tune with their child’s mindset Able to reflect on child’s internal state and motivations • Able to share memories and examples about their child

Parenting mindset

• Sensitive • Attentive and responsive to child’s needs

Parenting behaviors

• • • •



















• Emotionally distant or overly emotionally activated • Unable to imagine child’s internal state and motivations • Descriptions of their child are very brief and unelaborated, or confusing and hard to follow • Themes of role reversal or parental-self focus



• Insensitive • Unpredictable • Harsh





• Seek comfort and support from caregiver • Able to settle with support from caregiver

Child behavior

• Presence of caregiver helps to modulate physiologic and behavioral responses to stressors • Effects of stress are buffered by the caregiverchild relationship • Physiologic stress response remains within the “tolerable” range

During times of stress



• Unable to be comforted by their caregiver • Appear undisturbed by their caregiver’s departure









• Elevated physiologic stress response (i.e., HPA axis activity); stress levels remain high for longer • Biologic stress response is not brought down by the presence of a caregiver • Physiologic stress response can become “toxic” resulting in changes to brain architecture • Lasting negative effects on physical, mental health









• Better peer relationships • Better emotion regulation, self-reliance • Fewer externalizing or internalizing problems

Child Outcomes





• Poorer peer relationships • Poorer emotion regulation and self-reliance • More externalizing and internalizing problems





HPA, Hypothalamic-pituitary-adrenal.

work with rodents suggests that highly responsive maternal behavior contributes to offspring developing a neurobiologic stress system that is less reactive and can better cope with challenges. These changes to the neurobiologic stress system are linked to changes to DNA that relate to the expression of glucocorticoid receptors, supporting the view that maternal behavior produces lasting changes to the neurobiologic stress system. For children who don’t have a secure attachment relationship, the biologic stress response (e.g., HPA axis activity) may be pronounced; stress hormones spike to higher levels and remain high for a longer period of time. In the shorter term, the biologic stress response is adaptive, helping individuals to face challenges in the environment. Persistent activation of the stress response system without adequate recovery, however, is linked to lasting neurobiologic changes such as reduced neuroplasticity and neurogenesis. These neurobiologic changes are linked to lasting deleterious effects on an individual’s mental and physical health. Parenting is the most influential environmental factor that shapes individual differences in stress neurobiology due to the role parents can play in coregulating children and the stress that children experience when relationships are disrupted or insufficient to meet children’s needs. Further, experience early in life is formative in the development of

endocrine systems, so early experience tends to have more significant and lasting effects on children’s later development and functioning.

INTERGENERATIONAL TRANSMISSION OF RISK Children depend on their caregivers to help them regulate in the context of stress. A regulated, calm, and connected caregiver is able to settle a child more effectively, and these calming effects on children are seen both behaviorally and on a biologic level. However, when a caregiver experiences significant distress, such as that due to trauma, depression, or a substance use disorder, parenting behavior and child outcomes are negatively affected (Julian & Muzik, 2020). Importantly, many of these behavioral changes in both caregivers and children have been linked to biologic changes. Cynthia describes a recent incident at home. She picked up Justin from school after his principal reported that he had shoved another child on the playground. When they got home, Cynthia yelled at Justin for his behavior. As she recounts the incident, she becomes heated. When Cynthia yelled at him, Justin began yelling, kicking, and

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hitting. They both continued to get more and more upset until Cynthia closed herself into the bathroom to get some space. Eventually, Justin settled. Cynthia hadn’t brought up this event with him since then for fear that he would get upset again. You appreciate that Cynthia has several chronic stresses, stemming from uncertainty about job stability, her history of domestic violence, and stressful experiences in her own childhood. Epigenetic changes resulting from her own childhood trauma likely have altered her neurobiologic response to the stresses of parenting, and she struggles to regulate her own emotions. Justin became upset at school after another child mocked him; mocking has been a trigger for him, given his dad’s frequent mocking and aggression years before. Justin also meets diagnostic criteria for attention-deficit/hyperactivity disorder—a diagnosis his father also had. His impulsivity in responding to the other child’s mocking may also be reflective of an ADHD diagnosis.

Parental Trauma Exposure Intimate partner violence (IPV) and sexual abuse are strong risk factors for posttraumatic stress disorder (PTSD); those who are diagnosed with PTSD are at greater risk of again developing PTSD after a new trauma (e.g., childbirth trauma). Trauma symptoms, such as intrusive thoughts or flashbacks, are often associated with intense or prolonged psychological distress and may make it challenging for a caregiver to be emotionally present to a child’s experience. For many parents who have experienced abuse (e.g., IPV), their child’s aggressive behavior can serve as a trauma trigger, a reminder that brings back the memories and physiologic responses of previous traumatic events. When Justin is aggressive toward Cynthia, this behavior is a reminder for Cynthia of the trauma she has experienced, and she becomes flooded with negative emotions that she had previously experienced. Cynthia’s emotional distress limits her ability to see the situation from Justin’s perspective, so she responds to him in anger. Justin does not yet have the capacity to regulate his emotions on his own, and requires a caregiver’s support to settle down. His mother’s anger only serves to escalate him— and may also be a reminder for him of the trauma he has witnessed and experienced. Justin’s physiologic response to this stress involves persistent elevations in stress hormones that can be neurotoxic. Interactions like Justin and Cynthia’s are common in trauma-exposed families. Parents who have PTSD have been reported to perceive a poorer relationship with their children, are less emotionally available to their child, and show more aggression toward their children. Their parenting behavior tends to be less sensitive and responsive, and more controlling, avoidant, overprotective, intrusive, and hostile. Parents who experience trauma have changes in the HPA axis and autonomic nervous system, and these changes relate to negative parenting. Epigenetic changes in genes related to cortisol and serotonin are related to parents’ trauma-related

psychopathology. These biologic changes in the stress regulation system precede parenting difficulties. Findings are mixed with regard to whether parents with PTSD parent differently than non–trauma-exposed parents; it may be that mothers with PTSD show impaired parenting when their trauma reactions are activated, but parenting is unaffected when trauma responses are dormant. Effects of parental PTSD on child outcomes can be mediated by parents’ psychological distress or by parenting behavior. Children whose parent has severe PTSD tend to have more sleep difficulty (disruptions in sleep, separation anxiety around bedtime) and a more difficult temperament than those whose parent does not have PTSD. These children develop internalizing and externalizing problems as they grow older and tend to show aggression, attentional bias to danger and distress, and conflict avoidance.

Parental Depression Parental depression is a common childbirth complication (see Chapter 5) and can impact parenting behavior and interactions with one’s child, both during an episode of depression and when depression is in remission. Depressed parents tend to show less positivity with their children, more negativity and disengagement, and may be less attuned to their infant’s cues, and thus less likely to respond in a sensitive and responsive way. These parenting behaviors may be driven by a depressed parent’s difficulty in taking the child’s perspective or other cognitive and affective changes related to depression. Children of mothers who have depression are more likely to be born preterm, have low birth weight, be more irritabile, show fewer facial expressions, and be less active and attentive than children of nondepressed mothers. As they grow older, they show lower levels of oxytocin and have less flexibility in the HPA axis. They are more likely to develop insecure attachment relationships, have higher rates of psychopathology, experience peer relationship problems and social withdrawal, and tend to show more negative affect and less positive affect than children of nondepressed mothers. Effects of parental depression on children are most pronounced when a parent is depressed during a child’s earliest years.

Parental Substance Use Disorders Substance abuse commonly occurs in the context of other psychosocial risks, such as a history of childhood maltreatment and comorbid psychopathology (see Chapter 53). Those who abuse substances have altered dopaminergic systems. Dopamine is released in the context of positive parent-child interactions and contributes to these interactions feeling rewarding. Substance abusing parents may not experience the same sense of reward and motivation as non–substance abusing mothers experience. Parents who abuse substances have more authoritarian and harsh disciplinary styles and show less attentiveness and engagement when interacting with their children. Parents’ affect dysregulation can interfere with their ability to tune in to their child’s thoughts and feelings. Substance abusing parents are three to four times as likely to abuse or neglect their

 

CHAPTER 2 The Biopsychosocial Model

children, and the majority of children removed from their home by child welfare services are removed related to neglect from a parent with a substance use disorder. Substance abuse often leads to incarceration, so children with a parent who abuses substances may experience myriad consequences related to this (e.g., separation from a parent, change in living arrangements and/or caregivers, emotional stress, financial stress, housing instability). Children exposed to substances in utero experience many biologic and behavioral consequences, including stunted development, more unpredictable temperament, and later risk for depression, anxiety, and social problems (see Chapter 37).

Interacting Parental Influences on Children’s Behavior Parents’ personal experiences and mental state impact their own biology and the ways they think about and interact with their children. Caregiver-child relationships play a key role in determining children’s outcomes. In several cases, research has demonstrated that biologic changes in the parent precede changes to parenting. Children who experience parenting from a caregiver who has mental illness or a substance use disorder often experience harsh or insensitive parenting, social and familial stressors, and even abuse and neglect. All of these risk factors on the child’s level predispose the child to adverse outcomes, including developmental delays, physical health problems, low educational and occupational attainment, and later criminality and psychopathology. These adverse outcomes point to the importance of supporting caregivers and caregiver-child relationships throughout our clinical work with families. As children grow and develop, they eventually become parents themselves, and the intergenerational transmission of risk continues. The transmission of risk across generations may be interrupted by promoting secure, supportive caregiver-child relationships.

APPLICATIONS OF THEORIES IN THE PRACTICE OF DEVELOPMENTAL-BEHAVIORAL PEDIATRICS In the practice of developmental-behavioral pediatrics, clinicians cannot care for the child without also caring for the parents. In the case of Cynthia and Justin it is important to comprehensively evaluate Justin for conditions, including ADHD, language delay, or learning disabilities, which may become increasingly evident at early school age. If Justin meets the criteria for any of these diagnoses, remediation (as described in Sameroff ’s transactional model) will be an important approach. Remediation may involve treatment for Justin with medical management, educational intervention, and behavioral therapy. Reeducation will also be an essential component of treatment for this dyad. Via the strategy of reeducation, an improved understanding of how ADHD and any coexisting developmental delays or learning difficulties are contributing to Justin’s behavior may help Cynthia to be better equipped to manage his behavior. Gaining skills in parenting strategies, connecting ­

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effectively with his school to align behavior management, and learning about options for ADHD management will be important for Cynthia and likely increase her sense of parenting efficacy as she becomes more of “an expert” in Justin and his behavior and development. Finally, through redefinition the clinician can convey to Cynthia the range of factors contributing to Justin’s externalizing behavior—and to reframe the situation in a manner that puts her in the position of being competent and capable in supporting Justin’s developmental and behavioral needs. Treatment of his ADHD symptoms with medication or with parent behavior management may be one critical strategy that can alter the cascading interactions in the parent-child relationship and potentially shift the trajectory in a more positive direction. As Justin is able to better regulate his own emotion and behavior, he will experience more success at school and will elicit less frustration from Cynthia. As Cynthia experiences more success in parenting Justin, her view of Justin will grow to be more positive, and more sensitive interactions may begin to predominate. An ongoing relationship with a mental health clinician who can support and guide the dyad as their relationship evolves will be essential. A list of questions you might consider including in a clinical interview to understand the multiple, interacting forces on a child and family are in Box 2.1.

Supporting Parent-Child Relationships in Clinic While a core goal of clinical interviews is to understand the problem at hand to guide recommendations for intervention approaches, the interview can also serve as an intervention in itself (e.g., through redefinition or reeducation). In the context of an appointment, be attentive to anything parents are doing—even if it is small—that is helpful to their child’s wellbeing and positive development, and highlight and encourage these behaviors. When caregivers are very upset by their child’s behavior, their upset can be reframed as a sign of their care and concern about their child and their awareness of the potential consequences if things don’t change. The goal in highlighting caregivers’ developmentally supportive behavior and feelings is to motivate a shift in their behavior and cognitions. In reconnecting with the care and concern that might underlie the parent’s frustration, caregivers are likely to engage in more of this positive behavior in the future. During an appointment there is sometimes opportunity to highlight how a child is positively responding to something a caregiver is doing. For instance, a caregiver may have a softer tone of voice, or listen more, or express care and concern for the child, and a child might display a relaxed body posture or lean into the caregiver. What happens in the office between children and their caregivers is often a microcosm of what their relationship looks like at home in their everyday lives. If you see small interactions that are helpful—things you want to see more of—highlighting it increases the likelihood that it will happen again and can cue caregivers in to the role they have in dynamics that may feel automatic or unavoidable. While it can often be tempting to point out the reverse, too (e.g., the negative effect that a caregiver’s behavior can have on a child), it is generally not recommended and can be counterproductive.

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BOX 2.1 Recommended Interview Questions for Understanding the Multiple, Interactive  

Forces Impacting Child Development and Behavior Learn About the Problem • When did these problems begin? Any ideas about why these problems began? • What was going on in the family at the time these problems began (or became worse)? • Has anything worked to make the problems better? What makes them worse? • Are the problems different in different settings (home, daycare, school)? Are the problems different with different people (mother, father, grandparents, babysitters, peers)? • What is it like for you [parent/caregiver] when these problems happen? • How do you [parent/caregiver] typically respond to your child when this problem happens?











Learn About the Family • Who lives in the home? How is your child’s relationship with parents/siblings/others in the household? • What is a typical day like for your child? • Why do family and friends think your child is having this problem? • Who helps you in parenting your child? • Are you connected to any community supports that are helpful to you (e.g., social services, church)?









Recognizing Your Own Reactions to Patients Working with families who experience significant challenges can be emotionally draining as a clinician. Reframing our own interpretations of the situation may help us understand our patients and support them. When encountering particularly challenging clinical situations, we might ask ourselves, “What has happened to this family to make them respond in this way?” Typically when we wonder about someone’s experiences, we show empathy, and when we attempt to understand the reasons for a patient’s behaviors, we are able to respond in sensitive and helpful ways.

CONCLUSION Developmental and behavioral pediatric clinicians are well positioned to integrate biology and environment in their conceptualization of both the child’s behavior and development, and the parent-child relationship. The clinician should integrate the biopsychosocial complexity of development into their understanding of the child and development of a treatment plan and avoid erroneously attributing children’s outcomes to a failure of parenting. A biopsychosocial framing provides the foundation for even greater empathy for the parent and child in the therapeutic relationship.

REFERENCES Belsky, J., Bakermans-Kranenburg, M. J., & Van Ijzendoorn, M. H. (2007). For better and for worse: Differential susceptibility to environmental influences. Current Directions in Psychological Science, 16(6), 300–304.

• Has anyone else in the family had problems similar to your child?

Learn About Stress and Trauma • Has your child ever experienced or witnessed anything stressful, scary, or traumatic (e.g., people fighting or a scary medical procedure)? Has your child ever been separated from a parent or caregiver? • Have there been any changes in the family (e.g., change in who lives in the home, new sibling born, parent relationship changes, moving homes, moving schools)? • What has your child said or done that might indicate remembrance of parts of the traumatic/stressful events? • How did your child’s emotions or behaviors change after the trauma/stress? • What was the traumatic/stressful experience like for you [parent/caregiver]?









Learn About the Caregiver-Child Relationship • Tell me three words/phrases to describe your child’s personality. Tell an example/memory to illustrate each trait. • Tell me three words/phrases to describe your relationship with your child. Tell an example/memory for each one. • Who does your child remind you of?





Belsky, J., Zhang, X., & Sayler, K. (in press). Differential susceptibility 2.0: Are the same children affected by different experiences and exposures? Development and Psychopathology, 1–9. https://doi.org/10.1017/S0954579420002205. Epub ahead of print. PMID: 33634774. Bowlby. J. (1969). Attachment and loss: Attachment. Basic Books. Bronfenbrenner. U. (1979). The ecology of human development: Experiments in nature and design. Harvard University Press. Evans, G. W., Li, D., & Whipple, S. S. (2013). Cumulative risk and child development. Psychological Bulletin, 139(6), 1342–1396. https://doi.org/10.1037/a0031808. Gunnar, M. R., & Quevedo, K. (2007). The neurobiology of stress and development. Annual Review of Psychology, 58, 145–173. Julian, M. M., & Muzik, M. (2020). Interventions to enhance mother-infant attachment in the context of trauma, depression, and substance abuse. In P. S. Chandra, H. Herrman, J. Fisher, & A. Riecher-Rössler (Eds.), Mental health and illness of women (pp. 403–421). Singapore: Springer. Roth, T. L., & Sweatt, J. D. (2011). Annual research review: Epigenetic mechanisms and environmental shaping of the brain during sensitive periods of development. Journal of Child Psychology and Psychiatry and Allied Disciplines, 52(4), 398–408. Sameroff. A. (2009). The transactional model. In A. Sameroff (Ed.), The transactional model of development: How children and contexts shape each other (pp. 3–21). American Psychological Association. Slagt, M., Semon, J., Deković, M., & van Aken, M. A. G. (2016). Differences in sensitivity to parenting depending on child temperament: A meta-analysis. Psychological Bulletin, 142(10), 1068–1110. Zuckerman. M. (1999). Vulnerability to psychopathology: A biosocial model. American Psychological Association.

3 Theories of Human Development1 Sarah L. Friedman and Ellin K. Scholnick

For additional material related to the content of this chapter, please see Chapters 2, 4, and 15.

VIGNETTE The Browns were a family of four: mother, Ann; father, Ben; early adolescent, James; and toddler, David. Before the COVID-19 pandemic, both parents were in the workforce, James was in middle school and in after-school programs, and David was in a full-day center-based early care and education arrangement. When the pandemic hit, they all needed to shelter at home full time. Initially, both parents worked from home, but they did not have separate rooms to work from or bandwidth for multiple wireless connections. The family was physically isolated from their extended family, friends, coworkers, and teachers. Ann and Ben were highly concerned about their future, including lost wages, mounting bills, and financial independence. James began online education, but he struggled to stay engaged without the stimulation of hands-on activities in challenging classes, such as science, and rewards of socializing with his close buddies. David was enrolled in an online preschool, but he did not attend well or learn from the experience. Ann quit work to care for David and to support James. Ann set aside time each morning for learning activities with David, who seemed to thrive cognitively and socially with the increased attention of his mother. Ben also set aside time each afternoon for reviewing the day’s lessons and assignments with James. When James returned to school, he willingly wore a mask every day because he recognized it was the agreed-upon solution to maintaining his social connection with peers.

OVERVIEW Theories of development grow out of keen observations, insights, and preliminary research. They offer a narrative of changes associated with growth/maturation and a network of contemporaneous connections among a selective set of behaviors and processes. They attempt to explain what is behind observed behaviors. They address the roles of nature and nurture and stimulate further scientific research to validate the theories (see Miller, 2002, for a comprehensive discussion).

Note: We thank Flavia De Campos Dutra for assisting with the bibliographic research for this chapter during the time of COVID-19.

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The theories and the scientific evidence to validate them provide ways of thinking that parents, clinicians, educators, and even public officials have understood and used in their daily life and practice. In this chapter we review several influential theories of child development. To demonstrate their heuristic value, we discuss how these theories can help us figure out the effects of living through the time of COVID-19 on children’s functioning and development. The chapter describes three different theoretical perspectives on children’s development. Stage theories (Freud, Erikson, Piaget, Kohlberg, Bowlby) tell us what develops. These theories, which stress universal patterns of change, launched important research and clinical traditions. They have become less influential recently due to the rise of sociocultural theories (Vygotsky, Feuerstein, Bronfenbrenner, and Masten) that focus on how variations in social and environmental factors influence development. A third most recent perspective, dynamic systems theory (DST), focuses on the probabilistic nature of phase transitions that depend on the interactions among tiny changes in multiple systems rather than on predetermined plans. This last perspective is well aligned with other interdisciplinary approaches that study the relationship of biologic processes, environmental influences, and behavior.

STAGE THEORIES OF UNIVERSAL DEVELOPMENTAL CHANGE Sigmund Freud: Psychosexual Development Freudian Stages Sigmund Freud (1856–1939) posited that behavior was motivated by a life force—the libido—that at different developmental stages was primarily expressed in different parts of the body. In the first year of life the child focuses on oral sensations such as sucking, focusing primarily on relations with the mother. Freud called the unbridled quest for need satisfaction that begins at birth and continues through life the “id.” Libidinal energy then shifts to anal needs (roughly age 1–3 years). These sensations metaphorically relate to issues of control: of holding on and resistance to letting go. Toilet training occurs during this period. To cope with the pressures to regulate these needs, the child develops the “ego.” The ego provides the means of self-control to mediate between the child’s id and the demands of external reality. When the conflict between the id and the ego cannot be resolved, the 19

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ego resorts to solutions acceptable to the id, termed “defense mechanisms.” Examples of defense mechanisms include regression, where the child retreats to more infantile ways of behaving and projection, where the child blames another person for feelings the child cannot accept in oneself. Children then move to the phallic stage (ages 3–5 years). The child is driven by sexual attraction to the parent of the opposite sex and wishes to harm the parent of the same sex. There are strong strictures against fulfilling these desires. This tension is resolved by identifying with the parent of the same sex. This resolution is achieved by developing the “superego,” which serves both as a conscience and a codebook of socially acceptable behavior. Difficulties in the phallic stage are thought to influence the lifelong expression of sexuality and the individual’s moral standards. Next the child enters the latency period, in which Freud conceptualized minimal tension (see Chapter 8). That stage ends when the hormonal changes of puberty manifest themselves and start the genital stage (adolescence). Many of the battles of childhood arise again and need to be refought. The results shape the pattern of subsequent development and the strength of the ego and the superego.

Limitations Freud’s theory was based on interviewing his adult patients about their dreams and their childhood memories, not based on observations of children. Freud’s emphasis was on the development of boys and on heterosexual identity and relationships. Freud’s depiction, particularly of the phallic stage, has been very controversial as society has changed its norms for sex role and sexuality.

Erik Erikson: Psychosocial Development Erik Erikson (1902–1994) revised and expanded Freudian theory in 1963. Erikson called attention to the growth of cognitive and muscular skills such as talking and walking (i.e., ego skills) that pose developmental challenges because they bring to the child’s attention new aspects of the world. The attempt to master these challenges shapes the child’s developmental trajectory. For example, walking enables exploration of the environment and presents the child with new opportunities and dangers. Erikson took into account the cultural influences on the growing child’s attempts at mastery. Blending multiple sources of growth (drives, ego skills, and culture), Erikson described the life span with eight specific stages, each a dynamic tension between two opposing forces.

Eriksonian Stages The first stage (infancy) represents the tension between basic trust and mistrust. It embeds Freudian analyses of the oral stage in a broader interplay between parent and child. Reliable, sensitive child rearing builds the child’s sense of trust in the parent, whereas negligent care builds a sense of mistrust. These interactions lead to the individual’s proclivity to give or not to give to others. Additionally, the child must find a balance between safety and danger. The outcome of

judging situations to be safe rather than dangerous produces a sense of hope, which is pervasive throughout life. The second stage (age 2–3 years) represents the tension between autonomy and shame and doubt. Children’s growing language and muscular control provide opportunities both for independence and for going beyond permissible boundaries. Parents place limits on their children, and children must learn to inhibit urges and practice self-control without feeling shame or losing self-esteem when they fail. Arriving at the delicate balance between control of the self and control by others generalizes to the child’s attitudes toward law and order. The third stage (age 4–5 years) represents the tension between initiative and guilt. Like Freud, Erikson characterizes the third stage in terms of the acquisition of sex role and a functioning superego; however, Erikson notes that emerging phallic concerns create in boys the male modality of intrusion and in girls the female modality of receptivity. These tendencies prompt the child to search for the gender-appropriate models and identify with them. Males thrust themselves into social interactions, whereas females are receptive to others’ wishes. The phallic analogy of intrusion is extended to ego skills that enable children to create their own projects and purposes. These are fostered by the capacity for imaginative play. But imaginative activities and children’s plans can lead into taboo territory. Children must learn to discern for themselves, not just from parental directives, when they have crossed the line into unacceptable thoughts, feelings, and actions. This tension is the origin of the superego and guilt. Attempts to find the appropriate balance of personal initiatives with moral strictures shape the child’s sense of purpose. The fourth stage (age 6–12 years) represents the tension between industry and inferiority. Erikson drew attention to the role of schooling and its demands for mastery of the technological order. This stage lays the groundwork for children’s sense of competence. The fifth stage (adolescence) represents the tension between identity and role confusion. The teen years are marked by physical changes and hormonal surges that seem unpredictable and uncontrollable to teenagers. The demands of adulthood are beginning to become apparent. Therefore, teenagers need to test and gain acceptance for who they are, particularly with their peers. Identity refers not only to sexuality but also to their fit in the structure of society, in school, in their peer groups, and in the ethos of the culture such as presented by the media. Erikson was a pioneer in describing development throughout the life span. For Erikson the healthy, mature adult was productive at work and was in a mutually satisfying relationship. The latter stages of development were steps toward achieving these endpoints. The sixth stage (young adulthood) represents the tension between intimacy and isolation. This period is often when adults form committed relationships and begin families. Erikson extended the challenge of forging relationships with significant others to friends and colleagues and to building a collaborative style of interaction.

 

CHAPTER 3 Theories of Human Development

The seventh stage (middle adulthood) represents the tension between generativity and stagnation. Erikson’s definition of healthy relationships requires shared responsibilities and fostering a new generation both in the family and at work. The eighth and final stage of development (old age) represents the tension between integrity and despair. Many cultures value elder wisdom; however, if persons did not achieve their goals in relationships or work, then they may be left with a sense of disappointment. Erikson’s wife, Joan, added a different perspective to this stage, focusing on the challenges of dealing with declining abilities while retaining self-esteem and dignity.

Limitations Erikson’s stages remain tied to Freudian constructs. Empirical support for the stages is limited. However, as a heuristic and framework, the stages prove very powerful.

Jean Piaget: Cognitive Development Jean Piaget (1896–1980) focused his theory of development (Gruber & Voneche, 1977) on how the child develops a logical and scientific framework for understanding the physical world. He posited that children’s understanding goes through a series of age-linked qualitative changes or stages. Each stage is a filter that selects and organizes what the child perceives and understands. Each stage is a framework that provides the building blocks for the next, thus there is a definite order in which understanding emerges. Development occurs when children discover a discrepancy between their current understanding of reality (assimilation) and the features of the world that don’t mesh with that understanding (accommodation). To resolve the mismatch, children modify their framework. The novel framework may open up new challenges that are more complicated and far reaching.

Sensorimotor Stage During the sensorimotor stage, which unfolds over the first 24 months of life, a child’s body is the source of experiences. The child is born with a set of rigid motor activities (reflexes), such as sucking or grasping. Initially the reflexive acts are performed separately and directed toward specific objects. Gradually the child begins to adapt these reflexes to different objects, such as sucking differently on a nipple than on one’s fingers. Later the infant combines these reflexes as in grasping the object that is sucked. This experimentation leads to a better understanding of the external objects to which the child is trying to adapt. The ability to use more than one action simultaneously enables the child to construct sequences that facilitate the creation of sequential goal-directed behavior. In the second year of life these reflexes become internalized. For example, Piaget’s infant daughter first opened up her mouth while figuring out how to get into a drawer. Opening her mouth represented the act of opening the drawer. The child’s ability to represent leads to language learning since language is representational (see Chapter 44). The first words, however, may be idiosyncratic. One child called dogs “voo-voos,” based on the barking sound of dogs. Representational thought

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further enables the toddler to infer that objects that disappear from view and are outside the range of action nevertheless exist. By the end of the sensorimotor period the child is able to conceptualize a world that exists independent of one’s actions upon it (object permanence), and consequently the child can play hide and seek. Representational thought also enables the child to watch someone perform a novel behavior and then carry out the same behavior later (deferred imitation).

Preoperational Stage By the end of the sensorimotor period toddlers are able to keep in mind objects and events that they cannot see, but those early representational skills are limited and continue to develop during the preoperational period, which lasts up to 6 to 7 years of age. During this period the child slowly starts to use words that have shared conventional meaning for all users of the language. Private speech, based on words that remind the child of objects, is displaced by arbitrary words such as “dog.” But the child struggles with understanding that different people who observe the same object from different perspectives gain different information. Preoperational children think that their own point of view is shared universally. They also tend to center their attention on one salient aspect of an object or event and ignore less salient aspects. When milk is poured from a wide cup into a tall, thin glass, the child does not recognize that although the level of milk has changed, the amount of milk has not changed but is merely redistributed. The child focuses on the initial and final states, not on the transformation. Likewise, the preoperational child judges the moral value of an act (its being good or bad) by the amount of damage, not the intentions of the perpetrator. Concrete Operations Stage Concrete operations, which arise between 7 and 11 years of age, enable overcoming egocentrism and failures of conservation by constructing logical frameworks or sets of rules that can be coordinated with one another. This kind of understanding is fostered by formal education. The child understands that liquid poured from one container into the next can be poured back to its exact original state; that is, change in the level of the liquid is reversible. Reversible relations underlie arithmetic (e.g., addition and subtraction) and categorization (class inclusion and class subdivision) and can be used to calculate changes in perspective. The deployment of these relations or operational thinking enables the child to develop a more accurate understanding of space, time, and morality. For example, the child now makes moral evaluations by examining the intentions of the actor. Formal Operations Stage Operations are lifted to a higher, more abstract and integrated level during the final stage of cognitive development, which starts at 11 to 12 years of age. The child in the concrete operations stage deals with problems through induction, making generalizations based on a few encountered instances. However, the teenager in the formal operational stage can

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make hypotheses based on imagined possibilities and can test their current and future validity (deduction) using propositional logic.

Limitations Stage theory assumes developmental timetables and a universal order of cognitive development; the theory is an idealization of development. The rules of conservation theoretically apply whether the content is number or weight or volume, but children do not master them simultaneously. Similarly, although perspective taking, conservation, and construction of class hierarchies are all purported to be accomplishments of the concrete operational stage, they are not mastered simultaneously. Familiarity with content makes deductive reasoning easier, and even with familiar material errors can be made. Piaget’s theory also characterizes the child as a solitary scientist who constructs intellectual tools during the course of problem solving. This characterization ignores the sociocultural world in which the child lives. The contexts of children’s development vary in terms of the tools, experiences, and mentors available to the child and consequently affect the trajectory of children’s development.

relativism of personal values and opinions and an emphasis on the need for rules for reaching consensus. Stage 6 refers to a universal-ethical-principle orientation. Right is defined by decisions based on self-chosen ethical principles appealing to logical comprehensiveness, universality, and consistency. These are universal principles of justice, reciprocity, equality of human rights, and respect for the dignity of human beings. Kohlberg’s research shows that the use of the first two stages decreases with age, the next two stages increase until age 13, and the use of the last two stages increases until age 16.

Limitations Other scholars have presented conceptualizations of moral judgment and its development. Following the leads of Freud and Émile Durkheim (1858–1917), an influential French social scientist, most social scientists viewed moral development as a process of internalizing culturally given rules through rewards, punishment, or identification. Most recently, Gilligan (1982) challenged Kohlberg and argued that the development of female moral reasoning is rooted in concerns for the care of others rather than in developing toward the ideal of abstract legalistic principles.

Lawrence Kohlberg: Moral Development

John Bowlby: Attachment

Lawrence Kohlberg’s (1927–1987) theory of moral reasoning is one of the best known applications of Piaget’s theory. Kohlberg asserted that there was an invariant and unidirectional sequence of moral developmental stages reflecting changes in how the individual conceptualizes the world. In all cultures the direction of development is toward greater scope and hierarchic integration of reasoning. Based on interviews in which he presented children with moral dilemmas, Kohlberg identified six stages of moral decision making (Kohlberg & Hersh, 1977).

John Bowlby (1907–1990) believed that the early relationships between children and their parents are critical and have a farreaching impact on the trajectory and outcomes of human development (Cassidy & Shaver, 2018). Unlike Freud who built his theories of early development on adult recollections of childhood, Bowlby built his attachment theory on ideas from the fields of evolutionary biology, ethology, developmental psychology, cognitive science and control system theory, and observations of actual behaviors of children during their interactions with the most significant people in their lives. The survival of human infants depends on the existence of caregivers (primarily the mother) who are competent, responsive, and sensitive to their needs. As a result of sensitive caring, the baby not only survives but begins to create an emotional bond with the caregivers (attachment). The manifestations of attachment change from a need for physical proximity to other forms of connection as the young child becomes more competent. The theory suggests that infants form attachments to the people who interact with them on a consistent basis and primarily to the person who is most available to respond to their needs. In most cases the mother becomes the primary attachment figure, but infants also may form attachments with others (e.g., fathers). Attachment of infants to their caregivers can be secure or insecure. When the attachment is secure, infants are confident that their caregiver is available and is responsive to their needs; when not available, the caregiver will return. Securely attached infants feel free to get away from the secure base provided by the caregiver and explore the world around them. When insecure, the infant is likely to be fearful of abandonment and less free to explore the surroundings. Bowlby asserted that these patterns of interaction were a product of both biologically driven parenting behavior aimed at caring

Stages Stage 1 focuses on punishment and obedience. The preoperational child obeys rules that are set by figures in power to avoid being punished. They believe that the larger the damage caused by ignoring directions, the greater the punishment that is deserved. Stage 2, instrumental relativist orientation, begins the process of taking into account purposes and desires. Children judge morality by its personal benefits but also recognize that others have needs, too. Human relationships and morality associated with it are viewed as exchanges of favors. Stage 3 emerges when thinking broadens the perspective beyond one’s own needs to thinking about pleasing others and acting in ways that would be approved by them. This stage is often labeled “good-boy, nice-girl” morality. The adolescent judges behavior in terms of what people will think about the person who violates social norms. Stage 4, described as law and order morality, ties social norms to the maintenance of the formalized social order. Stage 5 describes the social contract, legalistic orientation such as practiced in democratic societies where decisions are the product of open debates. There is awareness of the

 

CHAPTER 3 Theories of Human Development

and protecting the infant and learned behaviors derived from childhood experience.

Stages As described by Marvin and Brittner (1999), Bowlby proposed four phases in the development of the attachment behavioral system. In the first phase (birth through 2–3 months of age) the infant elicits caregiving behavior and responds equally to caregiving regardless of the person who provides it. This phase can last longer under unfavorable conditions in which the infant’s needs are not taken care of in an appropriate and responsive manner. In the second phase (age 4–6 months) the infant orients and signals to one or more discriminated individuals. During this period the infant learns to respond in avoidant or resistant ways as a response to parental behaviors that are not responsive to their needs. At this phase, infants know who their caregivers are but don’t yet conceive of them as attachment figures with separate existences beyond the infant’s own experiences. In the third phase (beginning between age 6 and 9 months) there are gains in motor, cognitive, and communicative behaviors as well as in coordination. The infant consolidates attachment to specific caregivers and maintains proximity to those caregivers by locomotion and signals. Locomotion allows the infant to control proximity to the attachment figure, to move away so as to explore and to follow the caregiver when in distress. During this phase the infant shows differential clinging to the attachment figure when alarmed, ill, or distressed and differential burying of the face after an excursion away from the attachment figure. In the second phase the infant has an internal image of an end state that the infant would like to achieve, such as physical contact with the attachment figure. In the third phase infants are capable of selecting behaviors that will allow them to achieve the goal and alter the plan if necessary. During the third phase, the infant creates separate working models of caregiver(s) and the self. These are organized in a hierarchy of images and plans that the infant can mentally operate on to fit goals. However, at this phase the caregiver is not understood as an agent with behaviors and goals that are independent of the infant. The fourth phase is characterized as “goal corrected partnership.” Around the age of 4 years, children require less physical proximity and contact with their attachment figures to maintain a sense of security. They have a well-cemented internal model of attachment. Consequently they are increasingly fine with spending time in the company of unfamiliar peers and adults and will later build expectations about all relationships based on their attachment history.

Implications and Limitations Bowlby’s theory evoked great concern about the effects of long separations between infants and their mothers. Many worried that when mothers join the workforce, child-mother attachment would suffer. This concern led to research about the effects of nonmaternal childcare on attachment. The most comprehensive study found that attachment was not

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linked to individual aspects of nonmaternal care (the age at which it was started, its quantity, stability, type, or quality). However, infants were less likely to be securely attached when nonmaternal care of poor quality was combined with low maternal sensitivity/responsiveness, more than one care arrangement, or more than minimal amounts of nonmaternal care (Friedman & Boyle, 2008). These findings seem to contradict expectations based on attachment theory. However, the theory does not specify how much maternal care is sufficient for the establishment of attachment. While attachment theory is used in court cases pertaining to child custody, assessments of attachment are not sensitive enough to be used as diagnostic tools for assessment of individual families (Forslund et al., 2021).

General Implications for Stage Theories During the COVID-19 Pandemic Each of the stage theories suggests challenges that might arise in an era in which all aspects of life are disrupted. Freudian theory sensitizes us to be attentive to the rise of defense mechanisms, particularly around the developmental challenges of each stage (e.g., young children may regress in toilet training). In Eriksonian terms the stresses in relationships may allow a shift from the positive to the negative pole of any of the stages (e.g., if parents become highly stressed, their child may tend toward mistrust over trust or develop a sense of shame rather than autonomy). Piaget would say that the stresses of the pandemic might affect the progression of cognitive acquisition in part based on the lack of availability of learning environments with hands-on exploration and manipulation. For that reason, in the vignette, David, still a toddler, could not learn from online education. James, in the transition from concrete to formal operational stage of development, had variable success with exclusive online education. Kohlberg’s theory helps us understand the extent to which children of different ages can understand public health rules of behavior during a pandemic. It also informs the justifications that adults can offer to children to gain their cooperation with new obligations, such as wearing masks. Young children may respond to simple inducements to be a good child and do as the parents ask. School-aged children may be convinced to obey the law. Adolescents like James (in the vignette) and adults who are capable of a social contract, legalistic orientation may appreciate the relativism of personal values and opinions and therefore may agree with the need for rules for reaching consensus. They may also respond to appeals to statements of universal principles, such as the importance of saving the life of others over the insistence on personal preference. Bowlby’s theory can help parents understand shifts in their relationships with their children and do their best to mitigate the pandemic’s effects. As in the vignette, during the pandemic, parents and children spent a lot of time together due to the disruption of work, childcare, and school. Being together may support the development and strengthening of their attachment if parents remain calm and behave in a sensitive and responsive manner, as did Ann

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

in the vignette. However, in other cases, the stress experienced by children due to the disruption of their childcare or school may make them more needy of attention than usual. The stresses experienced by parents due to the loss of a job or working from home may make them more impatient and less sensitive to the needs of their children. These changes may threaten the attachment of parent and child.

SOCIOCULTURAL THEORIES Lev Vygotsky: Environmental Influences on Language and Thought Like Piaget, Lev Vygotsky (1896–1934) was interested in the origin of knowledge and of reasoning skills, and like Bowlby he was interested in the effects of human relationships on development. From Vygotsky’s perspective (Vygotsky, 1978) all aspects of human development are the result of interactions with more experienced others. Those interactions reflect cultural practices. In some cultures very little speech is directed toward young children, whereas in other cultures children are expected to take part in a conversation. Learning through interaction with more experienced others (e.g., a parent, an older sibling, a teacher, a friend) starts in infancy and continues throughout development. The more experienced other helps a child to construct memories, solve a problem, notice aspects of the environment, or elaborate on verbal communication. To be effective, however, those acts of collaborative exchanges, which Vygotsky names “scaffolding,” must be sensitive to what the child would find useful, given the child’s abilities and interests. They must be in what Vygotsky termed “the zone of proximal development.” The input contributes to the child’s understanding only if the child can absorb the information and incorporate it into the repertoire of knowledge. When the child can do so, the child is said to have internalized the knowledge that was not available to the child before. These acts of internalizing new knowledge also occur without the help of others through living as part of a specific culture and observing others as they live their lives, and express the value they place on different activities and goals. But Vygotsky chose to focus primarily on the social interchanges that promote development. Another important focus of Vygotsky’s theory pertains to the role of language in shaping the child’s thinking. While thought and language emerge as independent human abilities, language, which expresses thoughts, comes to regulate first through its external expression but later through its becoming internalized and expressed in the child’s mind. Early language is social but later is also internalized for selfregulation: In the course of conversations, others may issue directives such as “Don’t” or “Get the ball.” Eventually the child, tempted to engage in prohibited acts, may say to oneself, “Don’t.” This external, spoken speech later becomes the basis for representational thought. The speed with which this change from social speech to egocentric spoken speech to inner speech occurs depends on having conversational partners more mature than the child. They provide strategies

and instruments for learning and problem solving; they also encourage vocabulary growth.

Reuven Feuerstein: Social Mediation of Cognition Reuven Feuerstein’s (1921–2014) theory and applied work focus on the malleability of children’s cognition and intelligence at every developmental stage. Feuerstein et al. (1980) theorized that cognitive development is the product of two modalities of interaction between the organism and the environment. The first is the individual’s direct exposure to the environment. This exposure produces changes in the person’s behavioral repertoire and cognition, which in turn affects how the individual will interact with the environment. This modality of learning is consistent with the formulations of Piaget and of learning theorists. The second modality is mediated learning experience (MLE), which refers to how environmental stimuli are transformed by a “mediating” agent—usually a parent, a sibling, or a caregiver. The mediating agent’s actions are guided by personal intentions, culture, and emotional investment. The mediator highlights for the recipient of MLE (usually a child) stimuli that the mediator thinks of as most important and appropriate. The mediator frames, filters, and schedules their presentation. Thus the mediator influences what the child attends to and gets from the environment. As a result of mediation, the child acquires behavior patterns and learning sets that influence what the child learns through direct exposure. Feuerstein argues that the more and the earlier a child is subjected to MLE, the greater will be the child’s capacity to efficiently use and be affected by direct exposure to the environment. MLE is the ingredient that determines differential cognitive development in similarly endowed individuals even when they live in similar environments. Through MLE children learn approaches to mentally organizing, manipulating, and acting upon information gained from external and internal sources. Feuerstein distinguishes between two groups of determinants of differential cognitive development. The first group of determinants includes genetic factors, the level of environmental stimulation, emotional relationships between child and the mediators, and socioeconomic status. Under unfavorable conditions these determinants interfere with cognitive development. The second group of determinants consists of either lack of or reduced exposure to MLE. Such reduction interferes with cognitive development because the guidance that mediating agents provide regarding the relative importance of sources of information, the classification of stimuli, or their organization is lost. Feuerstein argues that determinants associated with the first group may affect the availability or quality of MLE. When they do, they indirectly affect the child’s opportunity to develop cognitive skills. Determinants from the first group may trigger the second group determinants and lead to cognitive developmental issues. However, if the barriers obstructing mediation are removed or bypassed, then it is possible to avert the expected course of impeded development and to restore a typical pattern of cognitive growth. Consequently,

 

CHAPTER 3 Theories of Human Development

Feuerstein developed a successful intervention program designed to teach children cognitive skills that will enable them to be effective learners and problem solvers.

Urie Bronfenbrenner: Direct and Indirect Environmental Influences Urie Bronfenbrenner (1917–2005) expanded on the description of the environment that the growing child experiences both directly and indirectly (Bronfenbrenner & Morris, 2006). He postulated five levels of environmental influences. The most immediate is the microsystem, consisting of social environments that the child experiences directly, such as the family, peers, and school. The microsystem is embedded in the mesosystem, the interlinked system of microsystems in which a person participates (e.g., the parent-teacher association, which links the family and school). The next level is the exosystem, which includes neighbors, social and mass media, social services, industry, and local politics. These influence the people who influence the child. Further out is the macrosystem, the attitudes and beliefs of the culture. All these systems are embedded in a historical context called the chronosystem. These levels of the environment form a network of connections, and the individual is at its center potentially influencing children as they actively seek to adapt to their world.

Ann Masten: Resilience in Adverse Environmental Circumstances Recent ideas about human positive adaptation to adversity explicate the processes and developmental consequences of the intricate interdependence of individual characteristics and environmental conditions. Psychologists have been intrigued that some children who grow under adverse conditions manage to thrive (see Chapter 2). It was initially believed that these children were invulnerable and that understanding their success will help with interventions for other children who were adversely affected by their challenging circumstances. However, accumulating research by Ann Masten (1951-) revealed that resilience only partly resides in the individual (2001). One cannot understand resilience without considering the characteristics of both the individual and the circumstances in which the individual develops. Consequently, understanding resilience requires examining both the individual’s response to adversity and the nature of the adversity itself. The adversity may be acute (e.g., death or natural disaster) or chronic (e.g., abuse, poverty, or separation from a parent). Adversity can also vary in scope or scale (affecting an individual, a family unit, or a community). Individuals will differ in the extent to which they are exposed to or protected from the adverse experience. Finally, adverse experiences may have both biologic and behavioral effects. The effects of adverse experiences can be evaluated with respect to expected achievements or developmental tasks for children of different ages or stages of development. Some of these achievements are considered universal, such as walking, talking, or reaching cognitive stages (defined by Piaget) or

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moral stages (defined by Kohlberg). Other achievements are culture specific, such as learning to weave in Mayan culture. Masten argues that resilience is “ordinary magic” that develops under most circumstances and involves the coming together of internal and external strengths. Children’s resilience develops in multiple contexts, including the individual, family, school, and culture. The predictors of resilience that are embedded in the child and are closely related to the family context include secure attachment relationships, social skills, self-regulation, mastery motivation, cognitive abilities, hopefulness, and meaning making (National Academies of Sciences, Engineering, and Medicine, 2019). Self-regulation (the ability to monitor one’s behavior, attention, thought, and emotions) is an important element of resilience. Children who are good at self-regulating have less emotional and behavioral problems and are better at adapting to the demands of school. Mastery motivation is another key element of resilience. Feelings of mastery develop as a consequence of successful interaction with one’s environment. This adaptational system is associated with the development of self-efficacy and possibly persistence. Higher cognitive ability is believed to be linked to flexible problem solving, the ability to navigate in novel situations, and to succeed in school. Consequently cognitive abilities are considered both promotive and protective resilience factors in childhood and adolescence. Finally, based on observations of resilient children and anecdotal accounts, hopefulness and positive meaning making may also be associated with resilience. The environmental conditions associated with resilience are conceptualized in terms of being either positive assets or challenges or risks. Examples of parental positive assets are sensitive, responsive, loving, predictable, and protective parenting and caregiving. These are linked to the development of secure attachment and indirectly to resilience. Likewise, effective parents who teach social skills, provide safety, set limits, establish routines, monitor children’s behavior, and help children make meaning are also supporting resilience in their children. When parents are not supportive in the abovementioned ways, their children’s resilience and development may be impeded, especially when no other people in the child’s environment step in to support the child. Given the multiplicity of factors that influence resilience, recent research has focused on identifying different patterns over time of reacting to adversity, some more rapid and some more successful than others.

General Implications of Sociocultural Theories During the COVID-19 Pandemic The theories discussed in this section alone and in combination offer insights into the profound impact of the COVID-19 pandemic. The pandemic impacted microsystems, mesosystems, and exosystems of children and their families. In the vignette recognizing the interacting threats, parents Ann and Ben reassigned roles and responsibilities, thereby resetting the microsystem. Their willingness and ability to support the children led to positive impacts, particularly on David when Ann quit work to better meet his needs. The theories can help

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

parents, educators, and clinicians understand that to thrive physically, emotionally, cognitively, and socially, children depend on supportive individuals, institutions, and culture to make challenges comprehensible and manageable.

MULTISYSTEM PROBABILISTIC PHASE TRANSITIONS Dynamic Systems Theory One of the newest approaches to development is the dynamic systems theory. In their analysis of DST Newman and Newman (2020) highlight the theoretical claim that the processes that may account for behavioral change (e.g., genetic potential, neurologic processes, physical characteristics, family structure, personal goals and motives) are intertwined, not independent causal factors. Development is the outcome of interaction of processes at many levels and many systems. Development is shaped by forces within and outside the person, merging and influencing each other to produce new capacities and behaviors. Development emerges as a result of moment-by-moment actions at many levels at once and does not follow a set universal plan. DST has roots in several fields, including mathematics, astronomy, physics, meteorology, and biology. In the field of human development DST has been applied to the analysis of the development of infant stepping and walking, cognitive development, executive function, infant language, emotion and personality development, moral development, temperament, and developmental psychopathology. These applications are based on the expectation that DST can lead to an accurate and detailed analysis of points or periods in development when there is change. DST also provides the methods for discovering the individual characteristics that are especially sensitive to particular environmental features that result in the emergence of new and enhanced capacities for adaptation. The core of the theory rests on the definition of systems. All systems (biologic and social) are composed of interdependent elements that share interrelated functions, boundaries, goals, and identity. A dynamic system continuously changes to carry out its functions in a way that maintains the smooth interaction among its components, thereby preserving equilibrium. The elements influence each other and change one another over time. Understanding development requires considering moment-by-moment events and their interplay with changing individual characteristics. It requires tracing a pathway from one point in time to a later point when a new, more mature behavior emerges. This requires a detailed analysis of multiple aspects of behavior and an investigation of the process of reorganization and growth. The theory helps specify the properties of systems that are in flux (open systems) and how feedback acts to regulate change. In DST developmental changes are referred to as phase transitions. A prerequisite for such transitions is the presence of natural variability in the system, caused by changes

in the environment and growth within the individual. Variability within systems or subsystems occurs all the time and can be observed on different timelines, from the fastest and most frequent at the neural and cellular level to the slowest processes required, such as for the maturing of effective decision making. The emergence of new pathways or patterns is possible only when the system’s variability already includes the potential for change. Phase transitions are usually preceded by a temporary increase in variability, which allows old patterns to be modified or replaced. Developmental changes cannot be fully predicted because the emergence of some patterns rather than others depends on many factors. Human beings are always in interaction with a changing environment. Moment-by-moment interactions with the environment are influenced by concurrent events and memories of what occurred previously on the motor, sensory, spatial, or communication level. Humans have a variety of strategies for obtaining information about the environment at different experiential levels so that the emergence of qualitatively new behavior is the result of all interactions over time. Small differences in the early phases of an emergent process can have consequences that result in later large differences or effects. Any small change causes changes throughout the system. The accumulation of small quantitative changes can lead to qualitative change (emergence) as one or a number of related skills pass a threshold and contribute to the integration of what seems to be a qualitatively different skill. For that reason, DST considers developmental processes as probabilistic rather than predetermined. Systems engage in a process of adaptive self-organization. When a system cannot assimilate new information or buffer its subsystems from changes in the environment, new subsystem relationships or functions emerge. These interactions help us to understand developmental change. For most humans, the result of self-organization is an increasingly flexible, efficient way of functioning. However, the new organization may not be effective because, for example, it cannot be sustained by lower-level components and it requires more energy or resources than available. When that occurs, the system may interfere with the functioning and interaction among other systems or subsystems. That in turn may interfere with daily life or social functioning.

Implications of the COVID-10 Pandemic DST suggests that we are limited in our ability to determine in advance how the challenges of growing up during the COVID19 pandemic will affect different children of different ages who live in distinctive family environments and communities, which are differentially supportive. However, the theory suggests that developmental progress will inevitably be changed by such a profound environmental factor. Understanding of the effects of the pandemic, therefore, depends on multiple elements and the nature of their interactions. This theoretical approach calls attention to the need to examine how each individual and the institutions in one’s specific environment respond to change and what forces reestablish equilibrium.

 

CHAPTER 3 Theories of Human Development

In the initial vignette after the pandemic disrupted the family, the parents’ willingness to shift roles and responsibilities allowed the family to return to a new state of equilibrium.

CONCLUSION In this chapter we introduced the reader to selected influential theories of human development that have guided research and informed public opinion, interventions, and policies pertaining to human development. We discussed these theories in relation to the COVID-19 pandemic to demonstrate the potential of the theories to inform, explain, and guide during the period of profound environmental stress. These theories have made major contributions to other societal issues. Bowlby’s theory of human attachment initially powered the public debate about the nature of childcare. In the period from 2016 to 2021 this same theory provided a theoretical underpinning for the public outcry about the separation of migrant children from their parents among families who entered the United States illegally. Vygotsky’s and Feuerstein’s theories of the mediation of cognitive development have served as a foundation for educational reform, stimulating the use social and language interventions to improve the education of children. Masten’s theory of resilience is particularly relevant for parents, pediatricians, and educators who wish to help children cope successfully with the COVID-19 pandemic. In our vignette we saw how parents Ann and Ben changed their approach to create positive assets to counteract the challenges of social isolation and online education. We hope that this discussion of developmental theories will assist parents, educators, clinicians, public health officers, and public officials to confront new challenges that arise in the future.

REFERENCES Bronfenbrenner, U., & Morris, P. A. (2006). The bioecological model of human development. In W. Damon & R. M. Lerner (Eds.), Handbook of child psychology: Vol. 1. Theoretical models of human development (6th ed., pp. 793–828). Wiley.

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Cassidy, J., & Shaver, P. R. (2018). Handbook of attachment: Theory, research, and clinical applications (3rd ed.). Guilford Press. Feuerstein, R., Hoffman, M. B., & Miller, R. (1980). Instrumental enrichment: An intervention program for cognitive modifiability. University Park Press. Forslund, T., Granqvist, P., Van IJzendoorn, M. H., Sagi-Schwartz, A., Glaser, D., Steele, M., & Duschinsky, R. (2021). Attachment goes to court: Child protection and custody issues. Attachment & Human Development, 1–52. https://doi.org/10.1080/1461673 4.2020.1840762. Friedman, S. L., & Boyle, D. E. (2008). Attachment in U.S. children experiencing nonmaternal care in the early 1990s. Attachment and Human Development, 10(3), 225–261. Gilligan. C. (1982). In a different voice: Psychological theory and women’s development. Harvard University Press. Gruber, H. E., & Voneche, J. J. (1977). The essential Piaget. Basic Books Inc. Kohlberg, L., & Hersh, R. H. (1977). Moral development: A review of the theory. Taylor & Francis. Marvin, R. S., & Brittner, P. A. (1999). Normative development: The ontogeny of attachment. In J. Cassidy & P. R. Shaver (Eds.), Handbook of attachment: Theory, research and clinical applications (2nd ed., pp. 44–67). Guildford Press. Masten. A. S. (2001). Ordinary magic: Resilience processes in development. American Psychologist, 56(3), 227–238. https:// doi.org/10.1037/0003-066X.56.3.227. Miller. P. H. (2002). Theories of developmental psychology (5th ed.). Worth Publishers. National Academies of Sciences, Engineering, and Medicine. (2019). Strengthening the military family readiness system for a changing American society. National Academies Press. https:// doi.org/10.17226/25380. Newman, B. M., & Newman, P. R. (2020). Theories of adolescent development. Elsevier Inc. https://doi.org/10.1016/C2017-003324-4. Vygotsky. L. S. (1978). Mind in society: The development of higher psychological processes. Harvard University Press.

4 Theories of Learning and Behavior Change Cy Nadler and A. Dawn Greathouse

VIGNETTE Emma is a 3-year-old female with developmental delays who presents with her parents in primary care for her annual wellvisit. The parents have ongoing concerns regarding her slow language development, coupled with frequent tantrums and rigidness. Emma continues to rely primarily on single words to communicate. When she is calm, she is social, affectionate, and engaging. Some days she is engaged in her speech and special educational programming, but frequently she refuses to sit. She cries, scratches, and falls to the floor when prompted to engage. Similar behavior problems occur at home during most daily routines. Today, the parents express frustration, discouragement, worry, and confusion: “Why isn’t Emma making progress? How can we parent a child who isn’t learning? Will she ever catch up?”

INTRODUCTION Learning and behavior change are at the very heart of developmental and behavioral pediatrics. Whether clinicians are supporting children like Emma in the opening vignette, treating older youth with autism or mental health concerns, or managing any other challenge with implications for child health and wellbeing, clinicians from a wide range of disciplines and an even wider array of work settings are directly engaged in helping children develop skills, reach milestones, and move from relying on behaviors that are maladaptive to healthy interaction patterns. Pediatricians, psychologists, speech therapists, occupational therapists, educators, behavior analysts, social workers, and other clinicians are all in the “business of behavior change,” though they likely conceptualize their methods quite differently. Individual children (and their parents, who are learning right along with them) require individualized applications of methods drawn from across the continuum of learning paradigms. This chapter discusses how the major theoretical foundations conceptualize learning and behavior change, and how these paradigms directly inform the ways that clinicians facilitate prosocial development in children. Following the introduction of key concepts from each of the most relevant theoretical areas, we will return periodically to Emma and her family to explore how theories link directly to clinical 28

application. Interventions mentioned in this chapter are described in more detail elsewhere in the volume, but embedding applied ideas here is intended to demonstrate to the reader that these concepts are in play at all times in pediatric clinical contexts whether we attend to them or not. We propose that having a strong foundational understanding of learning and behavior change will improve your practice, help you to adjust and expand intervention approaches, and inevitably improve the outcomes of the children and families you serve.

CLASSICAL CONDITIONING Behavioral learning theory began with Pavlov’s famous work describing classical conditioning processes (Michael, 2004). He demonstrated that biologically driven unconditioned responses (or reflexes; UR), such as pupillary dilation and the salivary reflex are naturally elicited by unconditioned stimuli (US) in the environment, and that these relationships can be extended through repeated pairings to a previously neutral stimulus (NS) that does not yet elicit any type of response (Fig. 4.1). This associative learning mechanism (also sometimes referred to as respondent or Pavlovian conditioning) is considered a foundational learning process. Extensions of classical conditioning proposed later by John Watson suggested that emotions, speech, thoughts, and even personalities might be conceptualized as the result of interrelated stimuli and responses unique to an individual’s learning history. His work also laid the foundation for understanding how psychopathology might develop through disadvantageous pairings. His infamous “Little Albert” experiment paired a loud noise (US) with a white rabbit (NS) to yield a conditioned response (CR) of crying that serves as an experimental model for the development of childhood phobias. Ensuing empirical work identified that not all stimuli pairings are created equal. Learning through associations is impacted by several parameters. Stimulus contiguity describes the latency between the presentation of the NS and the US; the shorter the interstimulus interval, the stronger the ensuing association. Of note, stimuli can be paired simultaneously, with slight delays, and even in different orders (e.g., NS followed by US, or US followed by NS) to yield an association. Contingency is also relevant to the development and strength of association, such that the probability of the occurrence of one stimulus is high given the occurrence of the other prior ­

For additional material related to the content of this chapter, please see Chapters 3 and 94.

 

CHAPTER 4 Theories of Learning and Behavior Change

US (food)

UR (salivation)

NS + US (bell) (food)

UR (salivation)

CS (bell)

CR (salivation)

Fig. 4.1 Classical conditioning is the process of pairing an unconditional stimulus (US, which produces an unconditioned response [UR]) with a neutral stimulus (NS) that ultimately elicits a conditioned response (CR). CS, Conditioned stimulus. Adapted from Cooper et al. (2007). Applied behavior analysis (2nd ed.). Pearson.  

to the emission of the UR (i.e., a loud noise will not be successfully paired with a light cue if the rat’s fear response occurs before the light turns on). Preparedness also impacts association, where biologic readiness facilitates some associations more than others (e.g., it is evolutionarily adaptive for a single pairing of a novel food with nausea to generate an association). Associations learned through classical conditioning can be unpaired through a learning process called extinction (note that a distinct process also called extinction occurs in the operant learning paradigm described later). If the conditioned stimulus (CS) or US is repeatedly presented alone, the strength of their relationship decreases, and the strength of the CS in eliciting the CR decreases. Spontaneous recovery is the reemergence of a CR after extinction has occurred and might be observed intermittently despite the lack of continued association between the US and CS. Research on classical conditioning focuses primarily on very specific (and at times reductionist) demonstrations that can be experimentally tested. The extent to which the paradigm can be used to explain complex human learning is less clear, but the processes of classical conditioning absolutely serve as a foundation for essentially all the learning theories that follow.

Emma’s parents report that she cries whenever they try to bring her into a public restroom. Upon discussion, her mother notes that on a few occasions Emma has been quite startled by the loud automatic flush of a toilet in these settings. A few pairings of the loud flush (US) with the public bathroom (NS) were enough to generate a conditioned fear response. The family is reluctant to attempt to extinguish her conditioned response because it will require frequent trips to public bathrooms; brainstorming with the family might generate strategies such as using noise-canceling headphones during trips to ensure she is not exposed to the full volume of the flush or providing access to an electronic tablet during the trip (creating a new, positive association) and afterwards (creating an operant contingency, described later).

OPERANT CONDITIONING Operant conditioning, based on seminal work by B.F. Skinner, expands on the classical conditioning models described earlier by providing a paradigm to describe much broader

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interrelationships between behavior and environmental events, as well as how to predict and alter these relationships. Operant conditioning is the process by which contingencies between stimuli in the environment (antecedents), behaviors, and subsequent effects (consequences) are learned, as evidenced by the subsequent change in likelihood that those behaviors occur under similar circumstances in the future (Cooper, Heron, & Heward, 2007). These relationships are conceptualized as a three-term contingency (as well as the antecedent-behavioconsequence [ABC]) model. Antecedents set the stage and conditions, and even trigger behavioral sequences; operant models then describe the antecedent as a discriminative stimulus because it specifically signals the presence of the previously learned behavioral contingency. As an example from an experimental paradigm, a pigeon might learn that when the cage light turns on, pecking the lever will release a food pellet. Since the lever does nothing when the light is off and the pigeon only pecks it when the light turns on, the pecking behavior is under the stimulus control of the light. The consequence in the ABC model simply implies that this stimulus is an effect of the behavior, and it does not imply whether the consequence is favorable or not. As indicated in Fig. 4.2, consequences that increase the probability of that behavior being emitted again under the same antecedent conditions are said to have reinforced that behavior, and consequences that decrease the probability of the behavior occurring are said to have punished that behavior. Modifiers of positive and negative (which also carry no implication of the consequence being favorable or not) describe whether the consequence involved the addition or removal of a stimulus. Parents, teachers, and even doctoral level clinicians all routinely misuse these terms when discussing operant processes; in applied contexts it is far more important to emphasize whether the intention is to make a behavior happen more often (e.g., compliance, correct responses on a math worksheet, urinating in the toilet) or less often (e.g., aggression, self-injury, school truancy). Extended discussion of punishment is beyond the scope of this chapter because learning (the increase of a behavior or skill) is, by definition, a reinforcement-based process. From an operant perspective, questions about how to provide reinforcement for a behavior are central to learning. Four broad categories of reinforcement encompass all possible consequences delivered following a behavior: attention (e.g., praise, affection, and other forms of social interaction), tangibles (e.g., access to toys, foods, activities, privileges), escape/ avoidance (the avoidance and delay of work or academic demands, pain/discomfort, and other undesired experiences), Positive (added)

Negative (removed)

Reinforcement (increases behavior)

Providing something desired following a behavior increases the likelihood of the behavior happening again.

Removing something aversive following a behavior increases the likelihood of the behavior happening again.

Punishment (decreases behavior)

Providing something aversive following a behavior decreases the likelihood of the behavior happening again.

Removing something aversive following a behavior increases the likelihood of the behavior happening again.

Fig. 4.2 Definitions of reinforcement and punishment in operant conditioning.  

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

and automatic (including internal sensory experiences and other outcomes that are not mediated by other people). Note that simply delivering praise or tablet following a child’s successful demonstration of a new skill may or may not reinforce that behavior (increase the likelihood that the behavior occurs again); whether or not the stimulus functions as a reinforcer depends on many factors, including individual preferences as well as fluctuating and relative reinforcer values (much like commodities in the stock market). Presuming that a high-value reinforcer is available, when and how often reinforcement is delivered following a target behavior will directly impact the rate and frequency that the behavior occurs in the future. Reinforcement schedules describe these parameters. Continuous reinforcement describes a schedule where reinforcement is delivered following each instance of the desired behavior, and this consistency is ideal for supporting the development of a skill; that said, it is quite arduous to maintain. Noncontinuous schedules are described as intermittent  reinforcement. Fig. 4.3 presents how four variations on these schedules of reinforcement delivery (denoted by the black tick marks) affect the rate of behavioral response. Fixedratio schedules describe reinforcement delivery following a set number of responses (e.g., “once you have done 5 math problems, you can take a break”); this produces a high response rate followed by a pause after reinforcement. Variable-ratio schedules involve reinforcement delivery after a variable number of responses with a set mean (i.e., a slot machine that pays out once every 100 pulls, on average); this produces a high and steady response rate. Schedules can also be based on time rather than number of responses. Fixed-interval approaches (i.e., providing a break every 30 minutes, regardless of how much work got done) and variable-interval approaches (i.e., praising a child for playing quietly every 5 minutes on average, with both longer and shorter intervals between praising) produce moderate but steady response rates and are more sustainable to keep up than ratio schedules. The target response requirements to produce reinforcement can also be adjusted to accelerate learning and behavior change. Shaping is the process of delivering reinforcement for  

 

Number of nesponses 1000

Fixed ratio Variable ratio

Reinforcers

750

Fixed interval Rapid responding near time for reinforcement

500

Variable interval

250 Steady responding

0

10

20

30

40

50

60

70

80

Time (minutes)

Fig. 4.3 Variations in the rate of behavioral response as a function of the schedule of reinforcement delivery. Adapted from Cooper et al. (2007). Applied behavior analysis (2nd ed.). Pearson.  

a behavior that is already in the individual’s repertoire (i.e., providing tablet access for wearing new glasses for 30 seconds without taking them off); once that behavior is strengthened, the behavioral requirement is incrementally increased over time and repeated successful trials (e.g., keeping the glasses on for 60 seconds, then 2 minutes, then 5 minutes, and so on) until the intended target is reached. Another mechanism for accelerating change is the use of prompting; this antecedent-focused strategy may involve the establishment of a new, clear discriminative stimulus so that the individual is more aware of the available contingencies. This approach may include coaching parents to deliver a clear “Pick up the block” instruction rather than vague “Can you help mommy clean up?” questions, the addition of a gesture indicating what to do and how to do it, and even physical hand-over-hand guidance to eliminate any ambiguity regarding what behavior is expected. Prompt fading, the gradual removal of artificial antecedent stimuli once the target behavior is established, will ensure that the individual does not become overly reliant on this support (prompt dependent). Not infrequently, undesired behaviors are unintentionally prompted, reinforced, and shaped by environmental contingencies (e.g., a child who has inadvertently learned that a certain four-letter word generates continuous highvalue attention from surrounding adults, especially under the stimulus control of grandma). Rather than attempting to change this behavior by adding even more attention to the mix (scolding, explanations, arguing, etc.), the family can instead focus on removing or withholding reinforcement following the target behavior. The process of removing or withholding reinforcement from a behavioral contingency is called extinction (and also accurately conceptualized as negative punishment, since it is a behavior-reduction technique). Often referred to as planned ignoring in cases when attention is the reinforcer, the speed with which extinction effectively suppresses the behavior depends on the strength of the behavior, the individual’s learning history, and the fidelity of application (i.e., mostly ignoring but occasional responding is equivalent to a variable schedule, which is quite reinforcing). Even perfect application of extinction will likely be followed by an extinction burst. As shown in Fig. 4.4, a steady rate of behavioral responding immediately increases when the reinforcement is discontinued, and the response rate only diminishes over time. A known limitation to clinical procedures (e.g., planned ignoring) that rely on an extinction process is the results are often temporary, with the punished behavior likely to reappear once  the punishment procedure is  withdrawn (spontaneous recovery).  To mitigate this, extinction might be augmented with a simultaneous reinforcementbased plan where an alternative behavior is intentionally reinforced at a high rate (i.e., teaching the child to say “I love you!” to grandma instead of using inappropriate words to get her attention). The entire field of applied behavior analysis (often used in the treatment of children with autism; see Chapter 94) is almost exclusively based on the basic operant processes of learning and behavior change described here, along with complex iterations and extensions of these concepts (including a  

 

 

 

 

CHAPTER 4 Theories of Learning and Behavior Change

Extinction Burst

Spontaneous Recovery Extinction Occurs Initial Behavior Response Frequency

Reinforcement Removed

Fig. 4.4 Rate of behavior after reinforcement delivery is discontinued. Adapted from Cooper et al. (2007). Applied behavior analysis (2nd ed.). Pearson.  

whole branch devoted to applying these ideas to verbal behavior and language development). That said, operant paradigms become more difficult to test (and often less useful in applied settings) when the behaviors of interest are complex, difficult to measure, or impossible to observe directly. After trying many discipline approaches, Emma’s parents have concluded that she simply does not understand consequences. They most often use verbal scolding and explanations in response to her aggression (“No! That hurts! You hurt daddy! Not nice.”). When Emma screams as the parents start to remove the tablet from her hands, they sometimes allow her to continue to have it at least for another minute. Therefore Emma appears quite adept at detecting the operant contingencies; moreover, the intermittent success she experiences has strengthened her repertoire. Even her scream has been shaped to peak effectiveness, as the aversiveness of the high pitch results in her parents relenting almost immediately. With support from the care team, Emma’s parents gradually increase their awareness that Emma is in fact learning all of the time from (sometimes unintentional) teaching, and that the current patterns hold clues for how to help her develop new habits. The team can also prepare the parents to anticipate the extinction burst process after they adopt a consistent, function-based approach.

SOCIAL LEARNING THEORIES As relevant as the classical and operant conditioning paradigms of behaviorism are for contemporary perspectives on learning and behavior change, much of their influence is felt through the lens of social learning theories that emerged as behaviorism evolved in response to the cognitive science revolution (and even psychoanalytic perspectives) of the 1960s and 1970s. While there was no doubt that changes in the environment could reinforce and shape behavior, criticism that all learning could not be explained by the immediate external environment challenged researchers and clinicians to consider what processes might mediate behavior change (Grusec, 1992). Concepts from both social learning theory (emphasizing observational learning processes) and the related social cognitive learning theory (integrating covert, cognitive processes) are both discussed here.

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Observational learning is an umbrella term that encompasses processes in which an individual’s behavior may change (including the development of new skills and a change in the application of an existing repertoire) as a function of observing the behaviors of others and the ensuing environmental consequences. Simply put, we can learn from the example of others without directly experiencing their example (i.e., without contacting the reinforcers or punishers that influence the behavior of the other person). To that end, modeling (the demonstration of a behavior) can inspire imitation of that same behavior. This mechanism has obvious implications for how learning and behavior change in children (and adults, for that matter) may be influenced on a moment-to-moment basis simply by being in the presence of others, whether or not the available models intend to be trying to inspire imitation. Bandura’s classic “Bobo doll” experiments demonstrated that externally delivered reinforcement was unnecessary for children to imitate adult models, challenging foundations of operant assumptions. Even verbally mediated models (i.e., a verbal description of a behavior) can inspire imitation. While the imitation of a behavior may be subsequently reinforced by external contingencies once it is performed, intrinsic or self-reinforcement (or—to use behavior analytic language— automatic reinforcement; see Chapter 94) can both evoke and sustain behavioral patterns. Modeling is most effective at influencing behavior change when the models are highly salient, when the observer can retain the information cognitively and/or practice it through rehearsal, and when environmental contingencies (e.g., reinforcement) are aligned with the behavior. These parameters inform why children are more likely to imitate some behaviors than others and how interventionists can maximize the likelihood that observational learning processes support the advancement of adaptive behaviors. Note that observational learning can also support changes involving the reduction of behaviors (e.g., observing a classmate get reprimanded for leaving the playground during recess may vicariously discourage other children from following suit). The cognitive processes that support observational learning have broad implications for learning and behavior change. Specifically, social learning perspectives expand on behavioral conceptualizations that we are products of our environments to describe how individuals also actively select and influence their own environments, which in turn influence their behavior. Self-efficacy is the degree to which you believe you can influence your environment, suggesting that having low and high self-efficacy in a situation would mediate the extent to which behaviors intended to change the environment would be pursued or practiced, what goals a person might select, and how much effort or persistence they apply toward their goals. The extent to which individuals are able to monitor their own behavior, evaluate contingencies, and engage in goal-directed behaviors is termed self-regulation, which in and of itself likely supports learning through a variety of pathways. Social learning theories are perhaps most prominent in the decades of research on the psychosocial etiologies of and treatments for externalizing behavior disorders in children,

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

advanced in large part by researchers at the Oregon Social Learning Center (Patterson, 1982). While parent behaviors unambiguously influence child learning and behavior, strong conceptual models as well as longitudinal analyses confirm that child behavioral patterns also influence the behaviors of their parents (see Chapter 2). Specifically, inconsistent and indiscriminate parental use of discipline increases child irritability; independently, child irritability also increases inconsistent parent discipline (Lengua & Kovacs, 2005). These bidirectional interactions are termed coercive processes because both children and parents learn (through direct operant as well as observational learning mechanisms) that hostile strategies can be at least temporarily effective at influencing the other party’s behavior (see Chapter 93 for an extended discussion). This cycle has the potential to repeat and expand exponentially, and the cognitive components of social learning theory effectively explain how chronic negative interaction patterns in childhood set the occasion for very specific beliefs about social interaction (e.g., attributing blame to others, feeling justified in engaging in antisocial behaviors, and characteristics of oppositional defiant disorder; see Chapter 55). The final major implication is that learning and behavior are potentially influenced by a child’s broader context, including neighborhood (Chapter 19), culture (Chapter 20), and media exposure (Chapter 21). While some social exposures have well-documented psychosocial consequences (e.g., adverse childhood experiences; see Chapter 15), others (like violent videogames) have not been consistently supported by research. In Emma’s case social learning is most relevant when considering the bidirectional influences that she and her parents have on each other’s behavior. Her stubbornness and irritability have very likely occasioned her parents to deviate from management strategies they may have preferred to use. Her parents have implicitly discovered that high-salience strategies like yelling or spanking result in brief but highly reinforcing reductions in Emma’s problem behaviors, which in turn serve as models for Emma to imitate (yelling and hitting back at them). Evidence-based strategies (see Chapter 93) explicitly seek to interrupt these coercive interaction patterns.

COGNITIVE AND CONSTRUCTIVIST PERSPECTIVES If learning occurred solely through associations and reinforcement (as early iterations of behavioral theories proposed), simple repetition would be sufficient for teaching skills and changing behavior. While direct instruction approaches are effective for building content knowledge and shaping foundational skills (e.g., discrete trial teaching; see Chapter 94), teaching complex ideas that learners can apply flexibly and creatively becomes difficult to conceptualize using behavioral terms alone. Cognitive mechanisms that describe how humans “construct” meaning and process information extend traditional behavioral approaches. Here we focus on the implications of these perspectives for learning and behavior change.

Cognitive conflict is one of the postulated learning mechanisms offered by Piaget (see Chapter 3) to explain how children acquire new knowledge and behaviors (Palincsar, 1998). This fundamentally social process occurs when an individual’s experiences contradict their existing knowledge, forcing a change in understanding and even behavior to resolve the discrepancy. While data are mixed, theory suggests that the relative developmental levels of a child and their interaction partners matter for acquisition, such that children at similar levels might be more likely to engage and coconstruct new knowledge; these ideas underly child-centered learning environments that facilitate creative interaction and exploration among peers. Vygotsky (see Chapter 3) extended these ideas to further describe how a child’s zone of proximal development (i.e., what a child can accomplish with scaffolding or collaboration with others, rather than just what the child can accomplish alone) is the best indicator of the child’s cognitive abilities. These constructs link learning, previously viewed as an externally driven process, with the internal process of development. Teaching, then, is ideally targeted to the outer extensions of a child’s zone of proximal development; practically speaking, cognitive approaches might function in the same way as behavioral shaping (reinforcement of gradually more difficult behaviors) and prompting to increase the probability of the desired response. Cognitive, social, and personality psychology research has also described mechanisms for how acquired information is integrated and influences behavior (Dodge & Crick, 1990). Cognitive heuristics, often described as mental shortcuts or rules that allow individuals to rapidly apply knowledge to situations, can be developed through experience, including observation, teaching, and coconstruction. Relatedly, cognitive schemas are networks built through experience, association, and other cognitive mechanisms to organize information. Extensions of these ideas to applied areas give rise to concepts such as attribution biases, where an individual’s learning history produces a tendency to interpret new information in a specific way and to behave accordingly (e.g., chronic social conflict with others giving rise to the assumption that individuals encountered in the future will have those same hostile intentions). The availability of information in memory (as a function of how frequently it is accessed and rehearsed) has implications for what social cues in the environment are most salient and likely to elicit behavioral responses, as well as how an individual predicts the behaviors of others. Such concepts have been integrated frequently into treatments for antisocial behaviors in youth who have developed cognitive justifications for their actions (see Chapter 55), and evidence suggests correlations between changes in information processing and behavioral improvements. The fundamental ideas that information storage, organization, and retrieval/application mechanisms have implications for learning and behavior continue to be extended. Contemporary artificial intelligence and computer science research use connectionist models of human cognition and learning, including child development and psychopathology (Stein & Ludik, 1998). Reminiscent of classical conditioning

 

CHAPTER 4 Theories of Learning and Behavior Change

models where repeated pairings link unconditioned and conditioned stimuli (not to mention Hebbian learning at the synaptic level), connectionist models use artificial neural networks to study complex information processing. While operant models require an individual to receive performance feedback (reinforcement or punishment) for the experience to impact future behavior, these models use supervised learning where an existing information set and a desired output can train an internal algorithm (i.e., learn how to produce the desired output) based on the degree of error produced through repeated trials. Systematic adjustment of how every available parameter is weighted in the algorithm provides internal (vs. external) feedback. In contrast, unsupervised learning is atheoretical, allowing the relationships within a data set to drive clustering and categorization of information without external influence. While direct links to neuroscience and behavioral processes remain theoretical, these learning paradigms serve as important models for human information processing. Emma’s special education teacher closely monitors her abilities and how much she can accomplish with varying degrees of scaffolding. Her individualized education plan goals (e.g., sorting colors correctly in the presence of a model with 80% accuracy) specify the degree of support she will be extended, and as Emma meets her goals the expectation as well as the scaffolding itself can be systematically adjusted. Emma’s speech therapist has coached the family on using a consistent combination of stimuli (picture schedule, gestures, and verbal repetition) during daily routines to help Emma connect this information with the activity. Over time, modeling and rehearsal of verbal routines (“ready, set, go!”) will help Emma anticipate, participate, request, and complete actions independently. These verbal routines also strengthen the connections among the single words she is already using functionally, which will help her gradually increase the complexity of her verbal output.

EXTENSIONS AND CONTEMPORARY APPLICATIONS The learning theories described earlier are used to support developmental psychopathology research and intervention approaches in the education arena, mental health care, and across the spectrum of developmental and behavioral pediatrics. Selected critical applications are described here and elaborated in other chapters.

Education Educational contexts (see Chapters 103 and 104) are perhaps the most obvious venue for considering learning and behavior change applications. Early care and education, early intervention, childhood special education programs, preschools, and primary and secondary schools are all tasked with teaching skills and managing behavior. As a whole, public educational programs rely on an eclectic combination of the theoretical frameworks shared here. Virtually all educators employ

33

foundational operant strategies such as differential reinforcement, shaping, and prompting/prompt fading to encourage skill development; many special education programs use peer models and other inclusion models to foster observational learning. However, the extent to which individual educators and programs adopt an entirely behavioral approach is highly variable. There is even tension at times between behavioral and cognitive/constructivist educational frameworks (Steele, 2005). Data-based comparisons evaluating which methods are most effective for specific student populations and learning objectives exist in only a minority of cases (e.g., Poncy, McCallum, & Schmitt, 2010). Schools vary in terms of how they implement evidence-based practices, allocate resources, and monitor academic and behavioral outcomes; at least part of this variability reflects underlying differences in perspective on how students learn (Ball & Trammell, 2011; Noltemeyer, Palmer, James, & Petrasek, 2019).

Cognitive-Behavioral Therapy Cognitive-behavioral therapy approaches for youth and adults experiencing a variety of mental health conditions incorporate classical, operant, social learning, and constructivist mechanisms to facilitate learning and behavior change (Benjamin et al., 2011). As detailed in Chapter 98, cognitive-behavioral therapy relies on a tripartite model where behavioral, cognitive, and emotional/affective manifestations interact in mental health conditions, and each aspect of the condition can be targeted in therapy. For example, youth with depression may experience cognitive symptoms that include negative beliefs and appraisals about themselves and their ability to improve their situation in life (termed cognitive distortions, and conceptually linked to learned helplessness and low self-efficacy described in social learning theories). These cognitive symptoms might be addressed through cognitive restructuring approaches, where the therapist coaches the youth to engage in reappraisal of overly negative perceptions and identify errors in thinking to build self-efficacy. Behavioral manifestations of depression, such as withdrawing from participation in routines, might be addressed through operant approaches that reestablish structure (e.g., go to soccer practice even if you don’t think you will enjoy it) via behavioral activation involving prompts and shaping to help individuals recontact naturally occurring sources of positive reinforcement in their daily lives. Emotional and affective symptoms (e.g., depressed mood, loss of enjoyment) might be further targeted by the reintroduction of stimuli previously associated with positive emotions (listening to a favorite song, looking at photos from a treasured experience, etc.).

Health Care Contexts Health care certainly focuses on biologically oriented aspects of child development and wellbeing; however, learning and behavioral factors have significant implications for health along with several parameters. Particularly when parents serve as the primary care managers for youth with developmental disabilities and/or mental health concerns, consideration of the with social contingencies and the cognitive factors that

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SECTION 1  Foundations of Developmental-Behavioral Pediatrics

facilitate and impede proactive participation in health care is critical. Behavioral, cognitive, and social learning foundations led to the development of the health belief model (Fig. 4.5) (Champion & Skinner, 2008), an ABC-based framework for describing why individuals take steps to prevent, identify, and manage chronic conditions. Cognitive-behavioral models have been applied to enhance parent motivation and positive beliefs regarding mental health services (Chacko et al., 2016). Even models for shared decision making that facilitate collaborative problem solving between families and providers draw on integrated learning frameworks (Adams & Levy, 2017). The transtheoretical model (TTM; Prochaska, Redding, & Evers, 2008), as the name implies, intentionally integrates broad perspectives on learning to guide intervention for health and behavior problems. Supported by substantial evidence across a range of targets, TTM engages evidence-based behavioral mechanisms (e.g., stimulus control, reinforcement management, counterconditioning) and cognitive approaches (e.g., consciousness raising, self and social liberation) to move individuals through stages of change toward readiness to fully engage in treatment.

Emma has wide-ranging needs that will require continuous advocacy and engagement. This is a tall order for alreadystressed parents who have conveyed a sense of confusion and helplessness regarding how to proceed in their child’s care. The team might employ strategies to explore their beliefs about Emma’s current needs, what the family perceives as barriers, and their level of confidence that these barriers can be navigated. Clinicians may also engage in a shared decision-making process to identify and prioritize possible next steps. If Emma’s parents are reluctant to pursue formal behavioral parent training, understanding the source of this hesitancy (considering time burden, mental health stigma, doubts about efficacy, cultural mismatch, and other factors) would provide an opportunity to collaborate on considering evidence-based alternatives.

Modifying Factors

Age Gender Ethnicity Personality Socioeconomics Knowledge

Individual Beliefs Perceived susceptibility to and severity of disease Perceived benefits Perceived barriers Perceived self-efficacy

Action

Perceived threat

Individual behaviors

Cues to action

Fig. 4.5 Elements of the health belief model, a framework for describing why individuals take steps to prevent, identify, and manage chronic conditions. (Adapted from Champion, V. L., & Skinner, C. S. [2008]. The health belief model. In K. Glanz, B.K. Rimer, & K. Viswanath [Eds.], Health behavior and health education: Theory, research, and practice [pp. 45–65]. Wiley & Sons, Inc.)  

CONCLUSION No single perspective has the market cornered when it comes to learning and behavior change, and we hope that following Emma and her family in this chapter underscores how learning paradigms carry important applications in the developmental and behavioral pediatrics arena. Rather than choosing sides, so to speak, we urge you to follow the evidence as it evolves in your areas of practice and to use flexible thinking to identify how different conceptualizations often lead to similar practical applications. Operant mechanisms and parent training grounded in social learning theories will help Emma’s parents manage her behavior problems (and reduce their own stress); cognitive and integrative models will help their health care and education professionals engage in shared decision making around how to support her continued growth and development; and cognitive-behavioral models will be available for Emma’s parents (and Emma herself, when she is older) to address mental health concerns. Effective providers can “see the forest” in addition to the individual trees, and will convey this guidance clinically without burdening families with excessive theoretical underpinnings. We invite you to apply these same frameworks to your own behavior change as well, as you engage in lifelong learning to support the families you serve and as you educate future generations of pediatric professionals.

REFERENCES Adams, R. C., & Levy, S. E. (2017). Shared decision-making and children with disabilities: Pathways to consensus. Pediatrics, 139(6), e20170956. Ball, C. R., & Trammell, B. A. (2011). Response-to-intervention in high-risk preschools: Critical issues for implementation. Psychology in the Schools, 48(5), 502–512. Benjamin, C. L., Puleo, C. M., Settipani, C. A., Brodman, D. M., Edmunds, J. M., Cummings, C. M., & Kendall, P. C. (2011). History of cognitive-behavioral therapy in youth. Child and Adolescent Psychiatric Clinics, 20(2), 179–189. Chacko, A., Jensen, S. A., Lowry, L. S., Cornwell, M., Chimklis, A., Chan, E., Lee, D., & Pulgarin, B. (2016). Engagement in behavioral parent training: Review of the literature and implications for practice. Clinical Child and Family Psychology Review, 19(3), 204–215. Champion, V. L., & Skinner, C. S. (2008). The health belief model. In K. Glanz, B.K. Rimer, & K. Viswanath (Eds.), Health behavior and health education: Theory, research, and practice (pp. 45–65). Wiley & Sons, Inc. Cooper, J. O., Heron, T. E., & Heward, W. L. (2007). Applied behavior analysis (2nd ed.). Pearson. Dodge, K. A., & Crick, N. R. (1990). Social information-processing bases of aggressive behavior in children. Personality and Social Psychology Bulletin, 16(1), 8–22. Grusec, J. E. (1992). Social learning theory and developmental psychology: The legacies of Robert Sears and Albert Bandura. Developmental Psychology, 28, 776–786. Lengua, L. J., & Kovacs, E. A. (2005). Bidirectional associations between temperament and parenting and the prediction of adjustment problems in middle childhood. Journal of Applied Developmental Psychology, 26(1), 21–38.

 

CHAPTER 4 Theories of Learning and Behavior Change Michael, J. L. (2004). Concepts and principles of behavior analysis. Association of Behavior Analysis International. Noltemeyer, A., Palmer, K., James, A. G., & Petrasek, M. (2019). Disciplinary and achievement outcomes associated with school-wide positive behavioral interventions and supports implementation level. School Psychology Review, 48(1), 81–87. Palincsar, A. S. (1998). Social constructivist perspectives on teaching and learning. Annual Review of Psychology, 49(1), 345–375. Patterson, G. R. (1982). A social learning approach to family intervention Coercive family process (Vol. 3). Castalia. Poncy, B. C., McCallum, E., & Schmitt, A. J. (2010). A comparison of behavioral and constructivist interventions for increasing math-fact fluency in a second-grade classroom. Psychology in the Schools, 47(9), 917–930.

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Prochaska, J. O., Redding, C. A., & Evers, K. E. (2008). The transtheoretical model and stages of change. In K. Glanz, B. K. Rimer, & K. Viswanath (Eds.), Health behavior and health education: Theory, research, and practice (pp. 97–121). Wiley & Sons, Inc. Steele, M. M. (2005). Teaching students with learning disabilities: Constructivism or behaviorism? Current Issues in Education, 8(10). http://cie.asu.edu/volume8/number10/index.html Stein, D. J., & Ludik, J. (Eds.). (1998). Neural networks and psychopathology: Connectionist models in practice and research. Cambridge University Press.

SECTION 2

 

Life Stages

5 The Maternal-Fetal Dyad: Challenges and Adaptations Amy L. Salisbury, Sara W. Moyer, Shannon Erisman, Patricia A. Kinser, Katheleen Hawes, and Pamela High

For additional material related to the content of this chapter, please see Chapters 2, 6, 49, and 51.

VIGNETTE Natalie is a partnered, 25-year-old woman, currently at 28 weeks of gestation with her third pregnancy. She brings her 4-year-old son, Jaxon, for an appointment with Dr. Greene, a clinician in a specialty clinic for children with developmental delays. Natalie appears to be sad and irritable, different from her presentation at prior clinic appointments. When Dr. Greene asks how she is doing, she responds, “Not great” and becomes tearful. Dr. Greene recalls that Jaxon was born at 35 weeks of gestational age and has been followed by the clinic since the age of 18 months for mild developmental delays in motor and language skills and sleep difficulties. Natalie had one pregnancy prior to Jaxon, which ended in a spontaneous loss at 12 gestational weeks. Natalie has a history of recurrent major depressive disorder and was treated with venlafaxine, a serotonin-norepinephrine reuptake inhibitor antidepressant, throughout her pregnancy with Jaxon. During his initial clinic visit, she had asked several questions about whether taking medication while pregnant with Jaxon could have contributed to her son’s difficulties.

INTRODUCTION To understand child neurodevelopmental functioning, we must first understand the history of the maternal-child dyadic system from conception. Pregnancy is a dynamic system that comprises the physiologic, anatomic, and psychological components of the woman and her developing fetus within the context of their psychosocial and cultural environment (see Chapter 2). Pregnancy is a time of vast confluence of changes within and among these systems. These changes and the maternal-fetal adaptation to them are influenced by both preconception and current psychological, experiential, and physiologic factors. In this chapter we use the following terms when considering key aspects of maternal-child health: perinatal (the time

from conception to 12 months postpartum), prenatal (conception through infant birth), and postpartum (after birth). In our opening vignette, Natalie’s mental health during the current pregnancy may be impacted by her past pregnancy experiences. Inevitably her health status is shared with her fetus. We have yet to learn about Natalie’s experiences prior to her first pregnancy or the quality of her current social support; these factors are important to consider in this situation, as mounting evidence suggests that early life and adolescent experiences and current social support may play a significant role in both parental adjustment to pregnancy and parenthood (McDonald, Madigan, Racine, Benzies, Tomfohr, & Tough, 2019). Mental health, stress, and coping have been shown to impact pregnancy outcomes as well as long-term child outcomes (see Chapter 2). Understanding the impact of these adaptations, transactions, and conditions on the pregnant woman and her fetus is critical to health care during pregnancy and throughout the child’s development. This chapter will provide an overview of the inherent adaptations and challenges that may occur in the perinatal period and their potential impact on child development. We focus our information on psychiatric disorders and adverse pregnancy-related events. We will briefly discuss available treatments and what is currently known about their potential impact, compared to the underlying condition, on fetal and child development. We conclude with assessment strategies and recommended actions for each condition in the form of clinical pearls.

PHYSIOLOGIC AND PSYCHOLOGICAL CHALLENGES IN PREGNANCY Each phase of pregnancy presents ongoing challenges for the maternal-fetal dynamic system that may be met with varying degrees of successful adaptation. A summary of the major adaptations by pregnancy trimester is presented in Table 5.1. 37

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SECTION 2  Life Stages

TABLE 5.1 Maternal-Fetal Changes Over Pregnancy and Associated Psychological and Social-Emotional Adaptations  

System

First Trimester (0–13 wk)

Second Trimester (14–27 wk)

Third Trimester (28–40+ wk)

Physical/ morphologic

Embryologic development evolves quickly, culminating in the fetal form ~13 wk gestation Primitive embryo movements begin by 7 wk gestation; larger, more frequent movements occur by week 12 No or minimal noticeable physical changes to woman’s outward physical form Absence of menses Increasing hCG levels Nausea and fatigue common Vomiting, less common Perception of poor perceived sleep quality with increased daytime sleepiness

Rapid fetal brain development; beginning of myelination Frequent spontaneous movements give way to increasingly stable rest-activity cycles by the end of the second trimester Growth of maternal uterine size, with expansion out of the pelvic cavity Maternal weight gain with altering center of gravity “Quickening”/maternal recognition of fetal movement usually occurs by week 26 Some women may continue to experience nausea and vomiting Blood volume increases, shifting abdominal structures to accommodate uterine size Changes in EEG sleep patterns possible

Accelerated fetal growth, fat stores, and brain development Increasing periods of quiescence as fetal behavioral states emerge Increasing size of the uterus, intermittent contractions of the uterus, and strengthening fetal movements may contribute to maternal physical discomfort Most large fetal movements can be felt by mother More pronounced changes in abdominal structures to accommodate uterine size Sleep becomes more fragmented with additional EEG changes; increased daytime fatigue

Social-emotional

Recognition of pregnancy Reorganization of sense of self, perceptions of others Pregnancy intention, preparation Social support needs increase Prior pregnancy experience, including past pregnancy loss, and psychiatric history and treatment may impact experience of a new pregnancy, increase anxiety, or precipitate changes in treatment due to concerns about taking medication in pregnancy Early mental representation of the fetus may begin

Increased maternal thoughts and images of the fetus; maternal-fetal attachment Most women feel physically well during this time compared to the first trimester Potential for exacerbation of underlying medical conditions or onset of pregnancy-related conditions (e.g., gestational diabetes) There is some evidence of increased onset of depressive mood episodes

Coping with impending delivery Preparation for newborn, transition to parenthood There is some evidence of increased onset of depressive mood episodes and or anxiety

EEG, Electroencephalogram; hCG, human chorionic gonadotropin.

This list of adaptations is not exhaustive but is meant to highlight those adaptations that may impact optimal fetal, infant, and child neurobehavioral development. Women most often suspect a pregnancy after the first missed menstrual period, about 2 weeks after conception, which is considered 4 gestational weeks, calculated as time since the last menstrual period. By the time a woman receives confirmation via a home or laboratory pregnancy test, she may already have begun to experience early physical changes alerting her to the possible pregnancy. Many factors may influence successful adaptation at this time, including an intention to become pregnant, positive social support, ongoing physical and emotional health, and past experiences with adverse pregnancy outcomes, loss, or trauma (Farren, Mitchell-Jones, Verbakel, Timmerman, Jalmbrant, & Bourne, et al., 2018). The recognition of pregnancy may be associated with changes in behavior to protect the fetus. While such changes may represent positive adaptations in the case of decreasing unhealthy habits, such as smoking or

drinking alcohol, women may make other decisions, such as to forego needed medication or therapies, without prior consultation with health care providers. Then, changes may precipitate increased medical or psychiatric risk. The early discomforts associated with the first trimester for some women typically resolve by the week 14 of gestation, which marks the onset of the second gestational trimester. While the second trimester is a time when most women report feeling physically well, it is also a time of vulnerability due to ongoing physiologic changes, including alterations in maternal sleep and circadian rhythms, physical changes in body size and shape, and hormonal and metabolic changes that occur throughout the second and third trimesters. Many women report varying mental representations of their fetus by the second trimester, which is thought to be the foundation for building an attachment to the fetus. Maternal-fetal attachment is a term used to describe the emotional connection a woman develops with her fetus

 

CHAPTER 5 The Maternal-Fetal Dyad: Challenges and Adaptations

during pregnancy, expressed in feelings, cognitions, and behaviors. Establishing an emotional connection to the fetus is considered an important part of the process of identification with the maternal role and may lay the groundwork for the mother-infant relationship in the postpartum period. The strength of maternalfetal attachment increases over the course of pregnancy, particularly after fetal movement can be physically experienced at about 18 weeks of gestation. Several factors may lower the strength of maternal-fetal attachment, including maternal depression and poor social support (McFarland, Salisbury, Battle, Hawes, Halloran, & Lester, 2011). Maternal-fetal adaptation is critical as the early prenatal mother-infant relationship might influence future social, emotional, and cognitive development in the child. The third trimester presents new challenges to the maternal-fetal dyad. The fetus is growing rapidly and has associated changes in physiology, increased fat distribution, and ongoing brain development. The mother may be experiencing increasing physical discomfort, sleep disturbance, and fatigue while preparing emotionally and otherwise for the impending delivery. Fathers and significant others may also be dealing with preparations and emotional adjustments in anticipation of birth, and this may impact the family’s overall relationships. Adapting to these changes successfully contributes to optimal birth outcomes. While child-focused clinicians may have limited contact with the mother during pregnancy, it is important to understand the impact of maternal mental health on short- and long-term infant and child outcomes. Even in women who have high levels of depressive symptoms during pregnancy, children have better developmental outcomes when their mothers are adequately treated and have decreasing symptoms over time than when their mothers are untreated or undertreated (Park, Brain, Grunau, Diamond, & Oberlander, 2018).

PERINATAL MENTAL HEALTH A focus on mental health during the perinatal period, from pregnancy through 12 months postdelivery, is essential for all clinicians. A woman may experience psychiatric symptoms at any time in pregnancy, and the likelihood of occurrence is higher if such symptoms were present prior to the pregnancy (Kee et al., 2021). In stark contrast to the prevailing belief that women were protected from mental illness during the perinatal period, recognition that pregnancy and postpartum may be a time of increased risk and vulnerability to mental health disorders is growing; during this time the risk of death by suicide in women is actually heightened (Mangla, Hoffman, Trumpff, O’Grady, & Monk, 2019). Perinatal women may experience mood or anxiety symptoms for the first time, or the symptoms may be recurrences. Evidence of a direct causal pathway between prenatal maternal depression and child and adolescent behavior, emotional functioning, and psychopathology is compelling (Glover, O’Donnell, O’Connor, & Fisher, 2018). The psychological wellbeing of fathers during the pregnancy has also been examined. Men may have different experiences with depression than women and may not seek treatment; however, paternal depression also increases risk for poorer child outcomes after controlling for maternal mental health (Ramchandani, O’Connor, Evans, Heron, Murray, & Stein,

39

2008). Prevention or treatment of psychiatric conditions remains a priority to promote optimal child development; however, consideration must be given to the potential risks and/or benefits that each treatment may confer.

Perinatal Mood and Anxiety Disorders In a welcome expansion from a previously narrow focus on postpartum depression, there is growing awareness of the full breadth of mental health difficulties that women encounter throughout the perinatal period. Perinatal mood and anxiety disorder (PMAD) refers to several disorders that may cause distress during pregnancy and up to 12 months after delivery, including bipolar disorder, psychosis, obsessive-compulsive disorder (OCD), posttraumatic stress disorder (PTSD), generalized anxiety disorder (GAD), and panic disorder. A recent, large-scale study reported an increase in PMAD and serious perinatal mental illness from 2006 to 2015 (McKee et al., 2020). Black, Indigenous, and people of color, women of lower socioeconomic status, immigrants and undocumented women, and women with disabilities are at elevated risk for PMAD. However, women from marginalized or disadvantaged communities may be particularly reluctant to disclose mental health concerns, given historical mistreatment and fear of negative consequences, such as involvement of child protective services.

Depressive Disorders Depression is a leading cause of disability for women and the most common nonobstetric complication of the perinatal period. Perinatal depression can result in negative maternal and infant outcomes, with cognitive, emotional, and behavioral challenges for children of mothers with untreated depression. Prenatal depression occurs at a rate of 10% to 15% overall and appears to be more prevalent as pregnancy progresses. Rates of depression in the first trimester are equivalent to those in nonpregnant women (8%–10%). The prevalence increases in the second and third trimesters, with rates as high as 19% overall (Kinser et al., 2018). In the postpartum period, depression occurs at rates around 20%. However, Latina and Black women report early postpartum symptoms (between 2 and 6 weeks after delivery) at higher rates (47% and 44%, respectively) compared to White women (31%) (Howell, Mora, Horowitz, & Leventhal, 2005). Depression after delivery can be severe; 20% of women with postpartum depression report suicidal ideation (Wisner et al., 2013). Women with postpartum depression often have co-occurring anxiety, which may include anxious attachment or fear of being alone with the baby. Perinatal depression should be differentiated from the baby blues, a dysphoric 5- to 10-day period that resolves on its own and affects up to 80% of postpartum women (Table 5.2). The baby blues refers to increased tearfulness, anxiety, mood lability, and irritability, and resolves without treatment within a few days. In contrast, depressive disorders are more severe and of longer duration than baby blues, include impairment in functioning, and typically require treatment to resolve. It may be difficult to differentiate between an unremarkable pregnancy and postpartum symptoms of depression, especially changes in sleep, appetite and weight, and fatigue. Clinicians may minimize or dismiss signs of perinatal depression, assuring mothers their experiences are normal. However,

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SECTION 2  Life Stages

TABLE 5.2 Comparison of Baby Blues and Postpartum Depression  

Prevalence

Onset

Duration

Treatment

Baby blues

Up to 80%

3–4 days after delivery

35 years), multiparity, epidural use, skin-to-skin contact with infant, and having a respected birth plan.

Panic Attacks and Panic Disorder Panic disorder has a prevalence of 1.3% to 2% in the perinatal period (Ross & McLean, 2006). Panic attacks may occur independently from a panic disorder. Due to the nature of the symptoms, the onset of panic attacks often results in seeking care at an urgent care or an emergency department before an accurate diagnosis is made. Panic disorder is typically considered when the panic attacks are recurrent, unexpected, and associated with significant distress or fear of having another panic attack. Treatment for Perinatal Anxiety Disorders Psychotherapy is the first-line treatment for mild to moderate perinatal anxiety disorders in the perinatal period, specifically cognitive behavioral therapy and mindfulnessbased behavioral therapies (Thorsness, Watson, & LaRusso, 2018). SSRIs are recommended in addition to psychotherapy for the treatment of moderate to severe anxiety or refractory anxiety disorders. Benzodiazepines may be prescribed in the short term for severe anxiety or insomnia, and lorazepam is preferred for pregnant and lactating women (Thorsness et al., 2018).

Pediatric In-Office Interventions for Perinatal Mood and Anxiety Disorders Pediatric visits present a unique opportunity for PMAD screening and intervention. Mother-baby cues may signal a PMAD, including lack of attunement between mother and baby or a lack of positive emotion toward baby (either observed or reported by mother, upon prompting). A clinician may also ask the mother about perceived support (e.g., “How much support do you feel like you have? Who is helping you?”), sleep (e.g., “Are you getting enough sleep yourself? When do you catch up on sleep? Are you able to sleep when you get the chance?”), and parenting self-efficacy (e.g., “How confident are you feeling about your role as a mother?”) (Umylny, German, & Lantiere, 2017). Screening for depression in pregnant and postpartum women can be a powerful tool for reducing depression symptoms and prevalence, regardless of interventions following screening. The AAP first recommended screening for

 

CHAPTER 5 The Maternal-Fetal Dyad: Challenges and Adaptations

postpartum depression in pediatric primary care practice in a clinical report in 2010 followed by updated recommendations in 2019 to incorporate both the recognition and management of perinatal and postpartum depression in pediatric practice (Earls, Yogman, Mattson, & Rafferty, 2019). If clinicians suspect or confirm maternal depression via screening, they should provide a referral to a behavioral health provider. Important interventions can be delivered in the exam room. Perhaps most important is to demystify and normalize symptoms, emphasizing three key points to the mother: (1) You are not alone, (2) you are not to blame, and (3) you will get better. The US Preventive Services Task Force took this recommendation one step further, stating that all adults, including pregnant and postpartum women, should be screened for depression as part of primary care (Siu et al., 2016). These recommendations are supported by the Centers for Medicare and Medicaid Services due to the mounting evidence of detrimental impact of maternal depression on child health and development, with support for financial coverage for this screening for Medicaid-eligible mothers. In addition, states may use the child’s Medicaid to cover maternal depression screening for non–Medicaid-eligible mothers during the well-child visit. Provisions were made to allow reimbursement for treatment for the mother when both the child and the mother are present, treatment focuses on the effects of the mother’s condition on the child, and services are for the direct benefit of the child (visit https://www.medicaid.gov/ federal-policy-guidance/downloads/cib051116.pdf). Box 5.1 provides suggestions regarding the clinical vignette. BOX 5.1 Brief In-Office Intervention

43

TRAUMATIC BIRTH EXPERIENCES Up to 45% of new mothers report experiencing traumatic childbirth (Beck, 2019). A traumatic birth experience is determined by the mother’s perception of the birth; it is not a clinical classification. What a woman perceives as a birth trauma may be perceived as routine to obstetric providers, especially when the infant outcome is positive. For example, an unplanned cesarean section is often considered somewhat routine for clinicians, yet this can be perceived by the mother as a traumatic experience. The elements of birth trauma can occur during any phase of childbearing, such as prenatal experiences, but are primarily associated with a woman’s labor and delivery experience. Other examples of traumatic birth experiences include stillbirth/infant death, emergency cesarean section/infant distress, cardiac arrest, inadequate medical care, fear of epidural, congenital anomalies, inadequate pain relief, postpartum hemorrhage/manual removal of placenta, forceps/vacuum extraction/skull fracture, severe toxemia, premature birth, separation from infant in neonatal intensive care unit, prolonged painful labor, rapid delivery, and a degrading experience. Prenatal factors predictive of traumatic birth include previous traumatic birth, prenatal PTSD, child sexual abuse, and previous history of a mood/anxiety disorder necessitating psychotherapy. Predictors also relate to the nature and circumstances of the delivery (e.g., high levels of medical involvement, extremely painful labor, and delivery type). There are subjective factors related to a woman’s perception of traumatic birth, such as feelings of powerlessness during labor and perception of lack of caring and support.

 

When Detecting PMAD Symptoms: Demystify and Normalize Symptoms Praise Natalie’s use of yoga to improve mood and her desire to spare her developing fetus harm. Discourage use of marijuana; as there is some evidence of harmful effects on the fetus that may persist into childhood (Nashed, Hardy, & Laviolette, 2021). Referrals Discuss with obstetrician and with Natalie’s former mental health provider and prescriber of antidepressants about her mental health and treatment recommendations. Consider referral to Maternal Infant Early Childhood Home Visiting (MICHV) for maternal support during and after pregnancy (https:// mchb.hrsa.gov/maternal-child-health-initiatives/home-visitingoverview). Resources Free online toolkit: https://www.dchealthcheck.net/resources/healthcheck/mental-health-tools.html AAP.org website with perinatal depression resources: https:// www.aap.org/en-us/advocacy-and-policy/aap-health-initiatives/Screening/Pages/Maternal-Depression.aspx Postpartum Support International: https://www.postpartum. net/ American College of Obstetrics and Gynecology infographic on marijuana in pregnancy: https://www.acog.org/womens-health/infographics/marijuana-and-pregnancy

Posttraumatic Stress Traumatic childbirth is an extreme stressor that can lead to mental health problems such as depression, anxiety, and PTSD. It can also have long-term chronic consequences. Posttraumatic stress symptoms can interfere with motherchild interaction, lead to subsequent parenting problems, and impact child development (Cook, 2018). Posttraumatic stress symptoms related to childbirth can flare up on the anniversary of the birth trauma. What is normally a joy-filled time, a child’s birthday, can become a day of dread and suffering for women if that child’s birth was traumatic. Additionally, subsequent pregnancies after traumatic birth can be anxiety filled if a woman is fearful of history repeating itself (Beck, 2015). Posttraumatic stress is a common acute response to a traumatic experience. If these symptoms persist, PTSD may develop. Not all women develop PTSD after a traumatic birth. Beck and colleagues (2019) found prevalence rates of elevated posttraumatic stress symptoms ranging from 0.8% to 26% after traumatic childbirth. Posttraumatic stress predictors that occur before childbirth include prior trauma in childhood or adulthood and a history of psychiatric disorders. Predictors that occur after childbirth are poor support during labor and delivery from clinicians, partners and family members, cesarean birth, negative birth experiences, and comorbidity with postpartum depression.

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Traumatic Birth and Disenfranchised Grief When childbirth does not go as planned and is perceived as traumatic, women may experience a significant grief response. If the outcome (e.g., a live birth) is perceived positively by observers, a new mother may not feel that she is able to discuss her emotional response to her perceived loss. This concept is known as disenfranchised grief. Doka (2002) defines disenfranchised grief as grief that is not or cannot be openly acknowledged or socially validated and supported. Women who do not receive support as mourners and are not able to express their grief may develop a prolonged grief response and subsequent depression. Providing resources for grief counseling and support may reduce the development of serious mental health problems after a traumatic birth.

period during which many maternal health needs will be unmet. Due to the relative frequency of recommended routine pediatric visits in the first postnatal year, the pediatric clinician may be the only clinician delivering care during this vulnerable period. Much of the focus is on assessment of the infant; this structure may leave many women feeling unheard and unseen during this time. Given PMAD is one of the most common obstetric complications, and that these symptoms can lead to detrimental consequences, it is essential for the clinician to consider the maternal-infant dyad when providing care to the infant in the early postpartum period (Moyer & Kinser, 2021). By focusing on the maternal-infant dyad together as a unit, the clinician will help prevent women from suffering in silence and therefore enhance the wellbeing of the developing infant.

Clinical Implications of Traumatic Birth

VIGNETTE

Prevention of Traumatic Birth While not all traumatic births can be prevented, certain strategies can enhance a woman’s childbirth experience. Most importantly, it is imperative to treat all women with dignity and respect and to involve them in decision making during the process of labor. Nurses, obstetric providers, doulas, and partners can provide much needed support to women during childbirth (Beck, 2015).

Natalie gives birth to a healthy, full-term infant girl, Maya. However, she had a prolonged labor, failure to progress to fully dilated, and ultimately delivered Maya by emergency cesarean section. Dr. Kim, pediatrician, is scheduled to meet with Natalie and her family prior to discharge from the hospital. When Dr. Kim walks into the room, she finds Natalie alone with the baby and breastfeeding. Although Natalie reports “feeling fine,” she becomes tearful when asked about her partner, stating that “he had to go back to work.” Dr. Kim examines the infant and finds her to be within normal limits, with a small hemangioma noted on the left shoulder. During the assessment of the newborn, Natalie asks many questions, repeatedly asks if the baby is okay, and if hemangiomas can be caused by medications or marijuana. Dr. Kim observes that Natalie is very anxious and is holding her infant tightly in her arms during their conversation. Dr. Kim recommends a consultation with the psychiatric consultation liaison team.

Prevention of PTSD After Traumatic Childbirth To reduce posttraumatic stress symptoms it is essential to provide women with the opportunity to debrief before discharge from the hospital after childbirth, in essence creating space to discuss their perceptions of the childbirth experience. The postpartum obstetric follow-up visits and the infant’s well-baby visits are also important opportunities for clinicians to ask questions and assess for posttraumatic stress symptoms. Suggested posttraumatic screening instruments to be considered include Primary Care PTSD Screen, The Davidson Trauma Scale, the PPQ1, and PPQ2 (Hynan, Mounts, & Vanderbilt, 2013). Validating a woman’s childbirth experience, providing caring support, assessing for traumatic stress and other mental health problems, and providing mental/behavioral health resources when necessary are essential to the wellbeing of families after traumatic birth.

FOURTH TRIMESTER AND BEYOND The postpartum period is typically defined as the first year after delivery, and the early postpartum period, or fourth trimester, is the first 12 weeks after delivery. The entire postpartum period is a time of ongoing and significant change for mothers and families. The time of greatest risk to maternal wellbeing may be 6 to 12 months postdelivery when death by suicide in postpartum women was found to be highest (Grigoriadis et al., 2017). Although the first obstetric visit is traditionally scheduled at 6 weeks postpartum, it is often missed by many women because of the challenges of childcare during that time, making the fourth trimester a sensitive

Clinical Pearls for the Fourth Trimester and Beyond Following are recommendations for the clinical care of women after delivery. • Although screening tools, such as the EPDS, can be helpful for detecting maternal depression, do not depend solely upon scores, particularly in cases when maternal behaviors seem divergent from the scores. It is essential to have nuanced conversations with women about your observations, and these conversations can go a long way toward supporting maternal mental health (see Box 5.1 and 5.2). • PMAD can manifest in many ways. Keep an eye out not only for typical depressive symptoms (crying, difficulty sleeping when having the opportunity), but also for other symptoms such as anxiety, obsessive thoughts and compulsive behaviors, confusion, irritability, and restlessness. • Clinicians need to be alert near a child’s birthday for emotional distress in mothers who have experienced a traumatic birth. Screening for PTSD and providing follow-up may be necessary to avert a crisis.





 

CHAPTER 5 The Maternal-Fetal Dyad: Challenges and Adaptations

Comprehensive Model for Mental Health in the Perinatal Period

Pregnant Individual

Biopsychoneuroimmunology Mechanistic Pathways

Demographics, personal variables, clinical characteristics, sociodemographic risks, environment

Physiological Changes Physical or biologically based changes

Baseline Status History/current mental health status

Pediatric Outcomes

Family

Child

Lived experience related to adjustment to new role, caregiving, maternal distress

Stress responses

Maternal-Fetal/Infant Dyad

Individual Factors

Psychosocial Moderators Social Support Nonbirthing parent Interpersonal Situations

Stress

Coping

Perceived stress, ACEs, racism, discrimination

Substance use Group classes

Mental-Health Emotional Wellbeing HPA-Axis

Immunologic

Hormonal shifts

Mediators

45

of the Dyad and Family (including Nonbirthing parent) Not solely reliant on absence of diagnosis or falling above a certain score cutoff on scale

Behavior, socialemotional functioning, psychopathology in childhood and adolescence Developmental vulnerability Internalizing and externalizing behaviors Attention-deficit/hyperactivity disorder

Up to 3 years postpartum Gut-Brain-Axis

Maternal-Infant Health Outcomes Preterm birth Lower birthweight Infant behavior dysregulation

Experiences of Matrescence

SSRI exposure: Transient motor delays Minor alterations in social communication

e.g., changes during pregnancy, experiences of loss, maternal-fetal attachment, experiences of care during birth and postpartum, traumatic birth and subsequent disenfranchised grief, the dyad’s feeding journey, NICU admission Recognition of Mother-Fetal/Infant Dyad as the Functional Unit with interrelated health domains

Fig. 5.1 Comprehensive model for maternal-child dyadic mental health during the perinatal period. ACEs, Adverse childhood experiences; HPA, hypothalamic-pituitary-adrenal; NICU, neonatal intensive care unit; SSRI, serotonin selective reuptake inhibitors. Adapted from Moyer, S. W., & Kinser, P. A. [2021]. A comprehensive conceptual framework to guide clinical practice and research about mental health during the perinatal period. Journal of Perinatal and Neonatal Nursing, 35[1], 46–56. https://doi.org/10.1097/JPN.0000000000000535.  

Framework for Interplay of Maternal-Child Health Given what is known about the relationship between maternal mental health and the healthy development of children, it is essential for all pediatric clinicians to be aware of maternal mental health throughout the perinatal period, including far into the postpartum period, and to be prepared to refer women for appropriate treatment, if possible (see Chapter 2). Indeed, research on early brain development, toxic stress, epigenetics, and adverse childhood experiences informs our knowledge that maternal mental health forms a critical environment for health, development, and learning during infancy and across the lifespan. Fig. 5.1 provides a framework for clinicians to consider regarding the interplay of biopsychosocial and neuroimmunologic pathways linking maternal, dyadic, family, and child health (Moyer & Kinser, 2021). The pathways linking stress, coping, social support, and other moderators of mental health are critical to understand in the context of child development. The pediatric clinician is a unique position to acknowledge matresence (i.e., the developmental process of becoming a mother) in the care of the maternal-child dyad. Aspects of matrescence may include clinical variables (e.g., physiologic changes), experiences specific to this time of development (e.g., perinatal health care experiences, the dyad’s infant feeding journey), and the individual lived experiences of women related to pregnancy and early parenthood (e.g., adjustment to new role, caregiving, returning to work, and maternal distress [relational, environmental, and psychological stress] specific to mothers) (Moyer & Kinser, 2021).

Examples from the clinical case vignette presented in this chapter have been included as a visual representation of the aspects relating to this patient.

CONCLUSION How might a clinician address the family in the continuing case vignette? It would be relevant to provide education based on two key facts: (1) The postpartum period lasts for 1 full year, and perhaps as long as 3 years; and (2) mental wellness is an important focus for both maternal and child health during this time. The clinician could provide the mother with information that maintenance of mental wellness requires full attention to one’s biopsychosocial wellbeing, from rest, recovery, and nutrition through awareness of mental health symptoms. The clinician must acknowledge the complexity of experiences of matrescence, reminding the woman that each woman has a unique experience of becoming a mother and affirming the value and complexity of this individual lived experience. After screening with a validated scale, a nuanced conversation should follow that involves demystifying and validating symptoms. The mother should be empowered to recognize her own symptoms and seek assistance from friends, family members, and clinicians whenever she has concerns about her mental wellness. Additionally, the clinician could remind her to recognize social support systems that could surround her during the postpartum period, provide anticipatory guidance about resources (Box 5.2), and

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SECTION 2  Life Stages

provide a warm hand-off if referrals to local mental health clinicians are indicated. By focusing on the maternal-infant dyad together as a unit, the clinician may prevent women from suffering in silence and thereby may enhance the wellbeing of the developing infant and family.

BOX 5.2 Resources for Discussions About  

Maternal Mental Health and Referrals for Enhanced Care

Discussion Topics • What has your experience been of becoming a mother to this child? (matresence) • What are your priorities today for the health of yourself and your child? (focus on maternal-infant dyad) • I see that your score was __ on the EPDS. This corresponds to ___ (no, mild, moderate, severe) depression risk. How does that fit with your current experience?





Referrals • Local mental health professionals • Postpartum Support International (with perinatal-specific support groups and clinicians) • Maternal Infant Early Childhood Home Visiting (MIECHV) programs sponsored by the Health Resources and Services Administration (HRSA) Maternal Child Health Bureau (MCHB) and the Administration for Children and Families (ACF) provide evidence-based home visiting for at-risk families during pregnancy and in the early childhood years. Their goal is to identify family needs, including mental health needs, to support young families and to promote healthy parenting practices. Sponsored programs include Nurse Family Partnership and Parents as Teachers, in 30% of American counties in 2021 (https://mchb.hrsa.gov/maternal-child-health-initiatives/home-visiting-overview).





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Bergink, V., Burgerhout, K. M., Koorengevel, K. M., Kamperman, A. M., Hoogendijk, W. J., Lambregtse-van den Berg, M. P., & Kushner, S. A. (2015). Treatment of psychosis and mania in the postpartum period. American Journal of Psychiatry, 172(2), 115–123. https://doi.org/10.1176/appi.ajp.2014. 13121652 Bulletin, A. P. (2008). Clinical management guidelines for obstetrician-gynecologists number 92: Use of psychiatric medications during pregnancy and lactation (0029-7844 Print). Clark, C. T., & Wisner, K. L. (2018). Treatment of peripartum bipolar disorder. Obstetric and Gynecology Clinics of North America, 45(3), 403–417. https://doi.org/10.1016/j. ogc.2018.05.002 Cox, J. L., Holden, J. M., & Sagovsky, R. (1987). Detection of postnatal depression: Development of the 10-item Edinburgh Postnatal Depression Scale. British Journal of Psychiatry, 150, 782–786. Doka, K. (Ed.), (2002). Disenfranchised grief: New directions, challenges, and strategies for practice. Research Press. Earls, M., Yogman, M., Mattson, G., & Rafferty, J. (2019). Incorporating recognition and management of perinatal depression into pediatric practice. Pediatrics, 143(1), e20183259. https://doi.org/10.1542/peds.2018-3259 Eustis, E. H., Ernst, S., Sutton, K., & Battle, C. L. (2019). Innovations in the treatment of perinatal depression: The role of yoga and physical activity interventions during pregnancy and postpartum. Current Psychiatry Reports, 21(12), 133. https://doi. org/10.1007/s11920-019-1121-1 Farren, J., Mitchell-Jones, N., Verbakel, J. Y., Timmerman, D., Jalmbrant, M., & Bourne, T. (2018). The psychological impact of early pregnancy loss. Human Reproduction Update, 24(6), 731–749. doi:10.1093/humupd/dmy025 Gilden, J., Kamperman, A. M., Munk-Olsen, T., Hoogendijk, W. J. G., Kushner, S. A., & Bergink, V. (2020). Long-term outcomes of postpartum psychosis: A systematic review and meta-analysis. Journal of Clinical Psychiatry, 81(2). https://doi.org/10.4088/ JCP.19r12906 Glover, V., O’Donnell, K. J., O’Connor, T. G., & Fisher, J. (2018). Prenatal maternal stress, fetal programming, and mechanisms underlying later psychopathology—a global perspective. Development and Psychopathology, 30(3), 843–854. https://doi. org/10.1017/S095457941800038X Goodman, J. H., Chenausky, K. L., & Freeman, M. P. (2014). Anxiety disorders during pregnancy: A systematic review. Journal of Clinical Psychiatry, 75(10), e1153–1184. https://doi. org/10.4088/JCP.14r09035 Goodman, S. H., Cullum, K. A., Dimidjian, S., River, L. M., & Kim, C. Y. (2018). Opening windows of opportunities: Evidence for interventions to prevent or treat depression in pregnant women being associated with changes in offspring’s developmental trajectories of psychopathology risk. Development and Psychopathology, 30(3), 1179–1196. https://doi.org/10.1017/ S0954579418000536 Grigoriadis, S., VonderPorten, E. H., Mamisashvili, L., Eady, A., Tomlinson, G., Dennis, C. L., … Ross, L. E. (2013). The effect of prenatal antidepressant exposure on neonatal adaptation: A systematic review and meta-analysis. Journal of Clinical Psychiatry, 74(4), e309–320. https://doi.org/10.4088/ JCP.12r07967 Grigoriadis, S., Wilton, A. S., Kurdyak, P. A., Rhodes, A. E., VonderPorten, E. H., Levitt, A., … Vigod, S. N. (2017). Perinatal suicide in Ontario, Canada: A 15-year population-based study.

 

CHAPTER 5 The Maternal-Fetal Dyad: Challenges and Adaptations Canadian Medical Association Journal, 189(34), E1085–E1092. https://doi.org/10.1503/cmaj.170088 Howell, E. A., Mora, P. A., Horowitz, C. R., & Leventhal, H. (2005). Racial and ethnic differences in factors associated with early postpartum depressive symptoms. Obstetrics & Gynecology, 105(6), 1442–1450. https://doi.org/10.1097/01. AOG.0000164050.34126.37 Hynan, M. T., Mounts, K. O., & Vanderbilt, D. L. (2013). Screening parents of high-risk infants for emotional distress: Rationale and recommendations. Journal of Perinatology: Official Journal of the California Perinatal Association, 33(10), 748–753. https://doi. org/10.1038/jp.2013.72 Kee, M. Z. L., Ponmudi, S., Phua, D. Y., Rifkin-Graboi, A., Chong, Y. S., Tan, K. H., … Meaney, M. J. (2021). Preconception origins of perinatal maternal mental health. Archives of Women's Mental Health https://doi.org/10.1007/s00737-020-01096-y Kessler, R. C., Petukhova, M., Sampson, N. A., Zaslavsky, A. M., & Wittchen, H. U. (2012). Twelve-month and lifetime prevalence and lifetime morbid risk of anxiety and mood disorders in the United States. International Journal of Methods in Psychiatric Research, 21(3), 169–184. https://doi.org/10.1002/mpr.1359 Kinser, P. A., Thacker, L. R., Lapato, D., Wagner, S., Roberson-Nay, R., Jobe-Shields, L., … York, T. P. (2018). Depressive symptom prevalence and predictors in the first half of pregnancy. Journal of Womens Health (Larchmt), 27(3), 369–376. https://doi. org/10.1089/jwh.2017.6426 Lawler, J. M., Bocknek, E. L., McGinnis, E. W., Martinez-Torteya, C., Rosenblum, K. L., & Muzik, M. (2019). Maternal postpartum depression increases vulnerability for toddler behavior problems through infant cortisol reactivity. Infancy, 24(2), 249–274. https://doi.org/10.1111/infa.12271 Madigan, S., Oatley, H., Racine, N., Fearon, R. M. P., Schumacher, L., Akbari, E., … Tarabulsy, G. M. (2018). A meta-analysis of maternal prenatal depression and anxiety on child socioemotional development. Journal of the American Academy of Child and Adolescent Psychiatry, 57(9), 645–657. https://doi. org/10.1016/j.jaac.2018.06.012. e648 Mangla, K., Hoffman, M. C., Trumpff, C., O’Grady, S., & Monk, C. (2019). Maternal self-harm deaths: An unrecognized and preventable outcome. American Journal of Obstetrics and Gynecology, 221(4), 295–303. https://doi.org/10.1016/j. ajog.2019.02.056 McCabe-Beane, J. E., Segre, L. S., Perkhounkova, Y., Stuart, S., & O’Hara, M. W. (2016). The identification of severity ranges for the Edinburgh Postnatal Depression Scale. Journal of Reproductive and Infant Psychology, 34(3), 293–303. https://doi. org/10.1080/02646838.2016.1141346 McDonald, S. W., Madigan, S., Racine, N., Benzies, K., Tomfohr, L., & Tough, S. (2019). Maternal adverse childhood experiences, mental health, and child behaviour at age 3: The all our families community cohort study. Preventive Medicine, 118, 286–294. https://doi.org/10.1016/j. ypmed.2018.11.013 McFarland, J., Salisbury, A. L., Battle, C. L., Hawes, K., Halloran, K., & Lester, B. M. (2011). Major depressive disorder during pregnancy and emotional attachment to the fetus. Archives of Womens Mental Health, 14(5), 425–434. https://doi.org/10.1007/ s00737-011-0237-z McKee, K., Admon, L. K., Winkelman, T. N. A., Muzik, M., Hall, S., Dalton, V. K., & Zivin, K. (2020). Perinatal mood and anxiety disorders, serious mental illness, and delivery-related health

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outcomes, United States, 2006-2015. BMC Womens Health, 20(1),150. https://doi.org/10.1186/s12905-020-00996-6 Moyer, S. W., & Kinser, P. A. (2021). A comprehensive conceptual framework to guide clinical practice and research about mental health during the perinatal period. Journal of Perinatal and Neonatal Nursing, 35(1), 46–56. https://doi.org/10.1097/ JPN.0000000000000535 Nashed, M., Hardy, D., & Laviolette, S. (2021). Prenatal cannabinoid exposure: Emerging evidence of physiological and neuropsychiatric abnormalities. Frontiers of Psychiatry, 11, 624275. https://doi.org/10.3389/fpsyt.2020.624275 Osborne. L. M. (2018). Recognizing and managing postpartum psychosis: A clinical guide for obstetric providers. Obstetric and Gynecology Clinics of North America, 45(3), 455–468. https:// doi.org/10.1016/j.ogc.2018.04.005 Park, M., Brain, U., Grunau, R. E., Diamond, A., & Oberlander, T. F. (2018). Maternal depression trajectories from pregnancy to 3 years postpartum are associated with children’s behavior and executive functions at 3 and 6 years. Archives of Women’s Mental Health, 21(3), 353–363. https://doi.org/10.1007/s00737-0170803-0 Ramchandani, P. G., O’Connor, T. G., Evans, J., Heron, J., Murray, L., & Stein, A. (2008). The effects of pre- and postnatal depression in fathers: A natural experiment comparing the effects of exposure to depression on offspring. Journal of Child Psychology and Psychiatry, 49(10), 1069–1078. https://doi. org/10.1111/j.1469-7610.2008.02000.x Ross, L. E., Grigoriadis, S., Mamisashvili, L., Vonderporten, E. H., Roerecke, M., Rehm, J., … Cheung, A. (2013). Selected pregnancy and delivery outcomes after exposure to antidepressant medication: A systematic review and meta-analysis. JAMA Psychiatry, 70(4), 436–443. https://doi. org/10.1001/jamapsychiatry.2013.684 Ross, L. E., & McLean, L. M. (2006). Anxiety disorders during pregnancy and the postpartum period—a systematic review. Journal of Clinical Psychiatry, 67(8), 14 Salisbury, A., O’Grady, K., Battle, C., Wisner, K. L., Anderson, G. M., Stroud, L. R., … Lester, B. M. (2016). The roles of maternal depression, serotonin reuptake inhibitor treatment, and concomitant benzodiazepine use on infant neurobehavioral functioning over the first postnatal month. American Journal of Psychiatry, 173(2), 147–157. https://doi.org/10.1176/appi. ajp.2015.14080989 Salisbury, A. L., Papandonatos, G. D., Stroud, L. R., Smith, A. K., & Brennan, P. A. (2020). Prenatal antidepressant exposures and gastrointestinal complaints in childhood: A gut-brain axis connection? Developmental Psychobiology https://doi. org/10.1002/dev.21966 Silverman, M. E., Reichenberg, A., Savitz, D. A., Cnattingius, S., Lichtenstein, P., Hultman, C. M., … Sandin, S. (2017). The risk factors for postpartum depression: A population-based study. Depression and Anxiety, 34(2), 178–187. https://doi.org/10.1002/ da.22597 Siu, A. L., Bibbins-Domingo, K., Grossman, D. C., Baumann, L. C., Davidson, K. W., Ebell, M., … Pignone, M. P. (2016). Screening for depression in adults. JAMA, 315(4), 380. https://doi. org/10.1001/jama.2015.18392 Smearman, E. L., Hendrix, C. L., Winiarski, D. A., Johnson, K. C., Smith, A. K., Ousley, O. Y., … Brennan, P. A. (2020). School-age social behavior and pragmatic language ability in children with prenatal serotonin reuptake inhibitor exposure. Development

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and Psychopathology, 32(1), 21–30. https://doi.org/10.1017/ S0954579418001372 Spinelli. M. G. (2009). Postpartum psychosis—detection of risk and management. American Journal of Psychiatry, 166(4), 405–408. Thorsness, K. R., Watson, C., & LaRusso, E. M. (2018). Perinatal anxiety: Approach to diagnosis and management in the obstetric setting. American Journal of Obstetrics and Gynecology, 219(4), 326–345. https://doi.org/10.1016/j. ajog.2018.05.017 Umylny, P., German, M., & Lantiere, A. (2017). Treating postpartum mood and anxiety disorders in primary care pediatrics. Current Problems in Pediatric and Adolescent

Health Care, 47(10), 254–266. https://doi.org/10.1016/j. cppeds.2017.08.003 Wall-Wieler, E., Roos, L. L., & Gotlib, I. H. (2020). Maternal depression in early childhood and developmental vulnerability at school entry. Pediatrics, 146(3), e20200794. https://doi. org/10.1542/peds.2020-0794 Wisner, K. L., Sit, D. K., McShea, M. C., Rizzo, D. M., Zoretich, R. A., Hughes, C. L., … Hanusa, B. H. (2013). Onset timing, thoughts of self-harm, and diagnoses in postpartum women with screen-positive depression findings. JAMA Psychiatry, 70(5), 490–498. https://doi.org/10.1001/jamapsychiatry. 2013.87

6 Infancy Marilyn Augustyn, Mei Elansary, and Barry Zuckerman

For additional material related to the content of this chapter, please see Chapters 2, 3, and 6.

VIGNETTE

 

 

Rosaria is tightly swaddled as the midwife hands her to her mother. Following a 36-hour labor, her mother is exhausted but grateful to hold her baby for the first time. Rosario instinctively nestles into the crook of her mother’s arm and turns her head toward her breast. Awkwardly, she attempts to find her mother’s nipple, but when she finds it, she is too tired to suckle. She calmly rests there by her mother. Over the next few hours, she learns to breastfeed, looks toward her mother’s adoring face, and turns to her mother’s soft voice. In 24 hours her mother takes her home. Rosario joins a household with four older siblings, her grandmother, and another family. She breastfeeds every 2 to 3 hours, and she lets her siblings gawk and poke at her, when she is alert, and cries when she gets drowsy. Her mother returns to work after 2 weeks at home. At that point, Rosario is cared for primarily by her grandmother and siblings. Her parents work long hours to provide the financial resources for their family, limiting their time with Rosario and her siblings. Nonetheless, Rosario continues to thrive in her loving family. “There is no such thing as a baby, only a baby and an adult.” Winnicot

INTRODUCTION Following birth, infants do not stand alone but continue to be part of an ex utero external dyadic regulatory system. Parents provide resources to supplement the infant’s capacity to regulate homeostasis. Infant crying, sucking, wriggling, lidded eyes smiling are the external behaviors that signal the need for a caregiver to respond by providing the support the infant needs. These events influence what happens next in the child’s life. In many ways the development in the first year of life has the steepest trajectory of developmental changes and brain growth of any other developmental epoch. The rapid changes integrate infants into their social world and simultaneously allow them to begin to function autonomously, if only in limited domains. However, social conditions and governmental policies can influence the earliest stages of infant development. Infants need at least one responsive caregiving adult; nonparental guardians can fit the bill under circumstances, as we have seen in the opening vignette.

This chapter discusses the multiple developmental processes that occur during the first year of life. For each developmental process, possible normal variations and indications for clinical concern are described. The theoretical foundation of the chapter is the transactional model (Sameroff & Chandler, 1974), which asserts that infants, caregivers, and their environment mutually determine the child’s developmental and behavioral outcome (see Chapter 2). Seen in these terms, child development is more than a two-way street; it is an intimate and complex interaction. Caregiving, through good times and adversity, impacts the child’s neurophysiology and structural changes in the brain; the social environment becomes embedded in biology.

NEUROLOGIC INDICATORS OF NEONATAL MATURITY State Organization/Sleep Healthy full-term infants display a regular series of distinct states over time. The study of behavioral states in infants has attracted wide interest as an indicator of the functional integrity of the central nervous system (CNS) during the fetal, neonatal, and infant periods of development (Table 6.1). Maturational changes in neonatal state periodicities have been correlated with later neurodevelopmental outcome; earlier maturation of electrophysiologic and behavioral patterns of quiet sleep in the newborn period predict higher performance on cognitive tests at preschool and school age (Scher, 2005; Shellhaas et al., 2017). Sleeping and waking states in infancy reflect the competency of the CNS, and they modulate the infant’s interactions with the external environment. An infant’s behavior differs, depending on whether the infant is in a sleep, drowsy, or alert state, as described in the vignette. A visual stimulus that captures the attention of a quietly awake infant does not elicit a response from an aroused, crying infant. Cyclic activity of the autonomic nervous system mediates the infant’s responsivity to the external environment and regulates numerous homeostatic functions. Neonatal behavioral and psychophysiologic measures of state organization highlight maturational differences between preterm and term infants that could affect their responses to caregiving (see Chapter 34). Overall, sleep regulation and consolidation represent critical developmental processes that occur in the first years of life. 49

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TABLE 6.1 Neonatal State Classification Scale  

State

Characteristics

Quiet sleep

Regular breathing, eyes closed; spontaneous activity confined to startles and jerky movements at regular intervals. Responses to external stimuli partially inhibited, any response is likely to be delayed. No eye movements, and state changes are unlikely after stimuli or startles than in other states.

Active sleep

Irregular breathing, sucking movements, eyes closed. Rapid eye movements detected underneath the closed lids. Infants also have some low-level and irregular motor activity. Startles occur in response to external stimuli and can produce a change of state.

Drowsiness

Eyes may be open or closed; eyelids often flutter; activity level variable and interspersed with mild startles. Drowsy newborns are responsive to sensory stimuli with delay, and state change frequently follows stimulation.

Alert inactivity

A bright alert look, with attention focused on sources of auditory or visual stimuli; motor activity is inhibited while attending to stimuli.

Active awake

Eyes open, high motor activity, thrusting movements of extremities, and occasional startles set off by activity; reactive to external stimulation with increased startles or motor activity. Discrete responses are difficult to note because of general high activity level.

Crying

Intense irritability in the form of sustained crying, and jerky limb movement. This state is difficult to break through with stimulation.

Adapted from Brazelton, T. B. (1984). Neonatal Behavioral Assessment Scale (2nd ed.). Heinemann.

Clinical Implications The infant’s control of state, responsiveness to environmental input, and sleep-wake patterns show wide individual variations. A crying infant who quiets down when picked up and a drowsy one who becomes wide-eyed at the sound of mother’s voice delight caregivers. Infants who cannot sustain an alert, receptive state unless assisted by an adult who swaddles them or gently restrains their hands may challenge adult caregivers. Methods to assist such infants in maintaining alertness include swaddling them and minimizing extraneous sounds or images when the infant is trying to focus. Clinical supervision of sleep disorders requires an understanding of the normal developmental and individual variability in children’s sleep patterns. Newborns typically sleep 16.5 hours per day, 6-month-olds sleep approximately 14.25 hours, and 1- to 2-year-olds sleep approximately 13 hours a day including naps (Ferber, 2006). The clinician can help parents devise strategies that gradually mold the infant’s innate biologic rhythms into socially convenient patterns (see Chapters 70 and 92, which specifically discuss clinical interventions and sleep). New parents may require help with distinguishing active or rapid eye movement (REM) sleep occurring every 50 to 60 minutes with waking. Infants moan, groan, move around, and may even open their eyes while in REM sleep, which uninformed parents may interpret as a signal to feed or intervene, leading to waking up a sleeping baby and delaying the development of sustained sleep.  

 

 

 

Sensory Maturation Sensory systems undergo rapid changes during the last trimester of pregnancy and the first several months after birth. An orderly sequence characterizes the functional development of the sensory systems of infants in utero; the tactile and auditory systems develop early. The visual system is the last sensory system to start functioning during gestation and

the least well developed at birth. Sensory abilities in infants mature rapidly during the first year of life. The newborn’s vision is optimal at 19 cm, a visual acuity of about 20/120. By 8 months of age, visual acuity improves to 20/30, nearly as good as normal adult acuity.  

Clinical Implications Parents subliminally monitor their infant’s responses to sensory input and modulate input to enhance the infant’s responsiveness. A mother may move her head slowly back and forth until the infant’s expression signals that her face is in focus. Parents slow the tempo of their speech and elongate and amplify words, often called parentese, to maintain infant’s attention. Research shows positive brain-related changes in response to parentese versus normal adult speech cadence (Kuhl et al., 2014). The Brazelton Neonatal Behavioral Assessment Scale (NBAS) was developed by T. Berry Brazelton and colleagues in the early 1970s to measure newborn behavior, to identify and understand normal variability, and to know the impact of prematurity and drug exposure on behavioral functioning (Brazelton, 1995). The NBAS has been shortened to the Newborn Behavioral Observation (NBO) tool to train clinicians to be observers of newborn behavior, respond effectively to newborn needs, and be utilized as a clinical relationshipbuilding tool (Nugent et al., 2007). Colic is a common condition that is likely related to temperamental characteristics of low sensory threshold to stimulation. Colic typically resolves in a predictable time course by 3 months with or without medical therapy in most cases. The most important role of the health care professional in colic is to educate, reassure, and support families (Fireman, 2006). Clinicians may need to provide explicit guidance for families whose infants are unusually hypersensitive or unresponsive, which is common among premature or small-for-gestational-age

 

CHAPTER 6 Infancy

infants. Sounds and sights that are attractive to most infants are aversive to hypersensitive infants. Although most infants prefer to track a moving face that is making sounds, hypersensitive infants may avert their gaze, vomit, or startle when confronted with simultaneous visual and auditory stimulation. With these infants, stimulation can be adaptively offered to one sense at a time. Extraneous stimuli, such as bright lights and loud music, should be decreased. When parents express concern that their infant does not seem to hear or see, the infant should be formally assessed.

SOCIAL-EMOTIONAL DEVELOPMENT Attachment Attachment describes the enduring and specific affective bond that children develop with caregivers. The infant’s behavior signals, including crying, fussing due to hunger or cold, quiet alert, and sleepy, are learned through trial and error. These behaviors allow caregivers to respond effectively to meet the infant’s needs leading to feelings of safety and security. Maternal depression, other mental health problems, alcohol and drug use, and domestic violence can interfere with understanding and responsiveness, which may be experienced by the infant as a stress or adversity (see Chapter 5). As we saw in the opening vignette, the primary caregiver may not be one of the parents. It may be other family members or childcare providers who interact with the child regularly. The infant also contributes to this dyadic relationship. An alert infant who reacts readily to parents’ faces and responds promptly to consoling maneuvers enhances parents’ positive feelings and a sense of competence. A drowsy, relatively hypotonic infant who provides less satisfying feedback may diminish parents’ emotional satisfaction. Security of attachment is predicted by (1) caregivers’ current representations of their own childhood experiences as expressed by their attachment experiences and (2) caregivers’ sensitive responsivity to their infants’ cues during the first year of life. Self-understanding of their upbringing enhances the adult’s ability to be good parents. Clinicians can support parents’ self-understanding by asking key questions (Zuckerman & Zuckerman, 2019). Most families require several months before they learn to identify and respond effectively to their infant’s needs for food, rest, or social interaction. By 3 months of age, the child and caregivers achieve social synchrony manifested by reciprocal vocal and affective exchanges. Adult displays of pleasure are followed by smiling, cooing, and movement in the infant. The next important step in the attachment process is the development of a clear preference for primary caregivers. By 3 to 5 months of age, an infant stops crying more readily for familiar caregivers than for strangers. Infants usually smile sooner and more brightly for their parents than for other adults, and this clear behavioral preference enhances the parents’ formation of positive emotional ties to their infant. Initially, attachment figures provide a sense of security through their physical presence. Later in the first year, infants internalize their relationship with attachment figures, leading to

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an internal model of security. By 18 months of age, infants can conjure an image of the attachment figure in their mind (memory), which helps comfort them when the parent is not present. The creation of a secure relationship of attachment requires consistent availability of adults who are affectionate and responsive to the child’s physical and emotional needs. The adults are often the infant’s parents, but, as in the vignette, may be other caregivers, based on circumstances. Other factors include mutuality and synchrony, stimulation, positive attitude, and emotional support. Without a secure home base, infants cannot move outward effectively. Children given the opportunity to develop a secure relationship are better able to build positive relationships with peers and unrelated adults and to cope with stress than children without a home base. The research method commonly used to describe infant attachment is the strange situation (Ainsworth, 1979). The purpose of this classic paradigm is to assess the quality of an infant’s attachment to parents and to evaluate an infant’s capacities for coping with stress when a parent leaves the infant’s presence and then returns. Attachment theory describes four categories of response at the time of reunion with the caregiver (Table 6.2).

Clinical Implications The clinician should attempt to identify parental problems, such as depression, excessive drug and alcohol use, and/ or past or concurrent adversity (see Chapter 5), which can interfere with sensitive responses that are needed for secure attachment. A two- and three-generation family history often has important implications for the preventing or mitigating intergenerational transmission of mental health conditions. Clinicians are able to observe and reinforce parent behaviors that promote attachment. When a parent attends to the infant’s signals and interest, engages in a shared moment of communication, and shows enjoyment in the infant’s face and voice, clinicians should acknowledge the parent’s responsiveness. Conversely, if parents exhibit a monotone with their baby, impatience with diaper changes, or emotional disconnection, clinicians should inquire about the parents’ feelings and practices in an effort to detect whether the family may require enhanced support. Clinicians can model responsive joyful interactions with the child to coach parents unobtrusively and respectfully to explore the relational capacity of the child. Clinicians may consider using a digital application, such as Small Moments, Big Impact (2021), developed for new parents with weekly segments for the first 6 months to promote parent and infant emotional wellbeing. When mothers do not respond to their infant’s attempts to get their attention, often called a mismatch, the infant responds with distress as indicated by crying, turning away, and jerky movements. This infant response is normal, inevitable, and occurs commonly while parents are driving, cooking, or speaking on the phone. Mismatches are “repaired” when caregivers eventually respond to their infant’s distress. After repair, young infants often show joy in the reconnection, likely indicating a sense of trust. This sequence is one of

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TABLE 6.2 Categories of Attachment Based on the Strange Situation Classificationa  

Category Secure attachment

Description 1. Reunites with the caregiver and uses the caregiver to become calmed 2. Returns to play quickly Implication: The child’s signals have typically be responded to in a respectful, caring manner. This pattern is associated with development of later positive social relationships.



Avoidant attachment

1. No overt response to the return of the caregiver 2. Continues play as though the caregiver did not leave and return Implications: This pattern suggests the child’s signals are rarely perceived or responded to in an effective manner. Avoidant attachment predicts later difficulty relating to peers and the emergence of a poorly developed sense of self.



Ambivalent attachment

1. Turns to the mother upon reunion, but become fretful and not easily soothed 2. Does not return to play Implications: This pattern predicts a later level of uncertainty and anxiety in social situations.



Disorganized attachment

1. Chaotic and/or self-destructive behavior upon reunion 2. Does not return to play Implications: This pattern is ascribed to recurring situations when a parent repeatedly causes a state of fear in a child, by expressing excessive anger, withdrawing, or creating a setting in which the child is offered no hope of comfort or safety, or no relief from distress.



The category is defined by the child’s behavior on reunion after a brief separation.

a

the origins of empathy development. Alternatively, when mismatches are not repaired most of the time, the infant’s secure attachment may be undermined, and neurophysiology may be disrupted.

Separation Negotiation of separation, both psychological and physical, poses a continuous challenge to parents and children. In Mahler’s theory, separation refers to the internal processes by which the child evolves a satisfying identity as an individual, distinct from the parents (Mahler et al., 1975). Physical separations may enhance or impede the child’s ability to develop a comfortable individuality. Responsive caregivers encourage the infant’s security and independence. A complementary process of acceptance of the child’s internal separation occurs within the parents. Some parents accept an infant’s total dependence and have difficulty tolerating a toddler’s striving for an independent identity.

Cultural Variations of Parenting Related to Social-Emotional Development Attachment and separation, discussed earlier, reflect a Western framework. Western cultures emphasize autonomy, individual achievement, self-reliance, and self-assertiveness, which all require parents to offer frequent praise, favor verbal feedback over physical contact, and promote independent behaviors. In contrast, parents in other cultures, particularly in Asian, African, and Latin American countries, tend to value interdependence, collective achievement, sharing, and collaboration. Parenting behaviors that reinforce these traditional concepts originate in agrarian society in which the community survival requires pooling limited resources (food, water, shelter) and distributing them equitably. However, due to economic growth, increased educational opportunity, and skills needed for modern jobs, many of these cultures, with the exception of those living in rural areas, are gradually adopting Western attitudes (Greenfield, 2007).

Feeding is an example of a cross-cultural parenting difference that can have profound impact on the infant. Cultures oriented toward autonomy may emphasize self-feeding, whereas cultures oriented toward interdependence may allow parents to spoon-feed children to older ages. Cultural variations related to sleep are also significant. In an autonomy-oriented approach to sleep parents put children to sleep in their own cribs or rooms. This decision requires the infant to self-regulate. In an interdependence-oriented approach to sleep adults and children share the bed. These traditions should be acknowledged when providing standard pediatric recommendations that may conflict with predominant cultural practices.

Clinical Implications Infants and toddlers who have experienced chronically inconsistent nurturing may seem uninterested in exploring the surrounding world and may appear clingy without the presence of obvious stress. Other infants may appear actively angry and distrustful of their primary caregivers, ignoring or resisting caregivers’ efforts to comfort them after brief separations or stress. A serious disturbance of the attachment process may be suspected when otherwise typically developing infants between the ages of 9 months and 2 years fail to show a preference for familiar caregivers in response to stress. Such behavior should alert the clinician to search for developmental delay, serious family dysfunction, neglect, or abuse, as described later under Consequences/Biologic Embedding of Early Adversity. The child’s and parents’ responses to everyday experiences of physical separation, such as bedtime, childcare, and parental travel, vary widely. Brief, predictable physical separations from the parents may facilitate successful psychological separation for young children. When parents express apparently disproportionate anxiety about their child’s wellbeing during routine separations, they are often expressing their ambivalence about the child’s evolution of independence. Explicit discussion of the parents’ feelings about internal and external

 

CHAPTER 6 Infancy

separations can be more effective than reassurance about the ostensible concern. Difficulties with separation become acute when, at 7 to 9 months of age, children begin to show separation distress, crying whenever the caregiver leaves their presence. Clinicians can help parents recognize that the separation distress results from normal object permanence (see Chapter 3 and as described later). Parents can facilitate the formation of these relationships with strangers by their physical availability to the child as the relationship is first formed. Childcare providers or babysitters should be introduced with a parent present and slowly increasing the duration of separation depending on whether it is a strange or home setting. The child’s age and temperament should also be considered. Regressive behavior on reunion with the parent should be expected and is normal. Because the separation process is mutual, clinicians should be alert to parental issues that can unintentionally sabotage the child’s establishment of a separate identity. Identity formation may be particularly in jeopardy when the parents perceive the child as unusually “vulnerable” because of past illness or factors that make a child special (e.g., only boy, last child). A recent loss in the parents’ lives, such as a death or divorce, also can threaten the normal separation process. Such parents can become overprotective, leading to the vulnerable child syndrome with separation difficulties, insufficient setting of limits, somatic concerns, and overuse of the health care system (Pearson & Boyce, 2004). A clinician who encourages parents to discuss their real or imagined losses can help to liberate the parent and the child.

Social Referencing and Joint Attention Infants look to their primary caregiver for signals (smile, comfort, fear) about how to deal with new experiences, a phenomenon referred to as social referencing. It emerges from the age of 7 to 10 months and forms a foundation for social learning and social appraisal in adulthood. When approached by a stranger, a 7-month-old infant looks to the parent to see if it is okay to allow this stranger to approach. If the parent smiles comfortably, the infant is more likely to remain calm. If the parent is upset, the child is more likely to cry. In parallel, joint attention, referring to the capacity to coordinate attention with others regarding objects and events, emerges. Joint attention begins when the infant is about 6 months of age and continues to 18 months. It is associated with future language, cognitive, and social skills. Joint attention then becomes triadic, meaning that the child can direct the attention of one person actively to share in the child’s experience of another person or object, often a toy. These two phenomenon are critical milestones of social-emotional development.

Clinical Implications Encouraging parents to engage their child in conversation, song, and natural eye contact is important from the first days of life. Joint attention provides the opportunity for infants to get the most out of caregivers reading to them; they can look

53

back and forth from book to parent’s face with all its emotions with reading and eye contact. Monitoring for the appearance of social referencing and joint attention in the first 2 years of life has become a focus of great attention in efforts for earlier identification of developmental disorders, such as autism spectrum disorders (see Chapter 41).

Autonomy and Mastery Autonomy refers to the achievement of behavioral independence. Mastery describes the child’s quest for competence. These complementary processes require that caregivers and infants continually renegotiate control of the infant’s bodily functions and social interactions to prevent struggles over feeding, sleep, toileting, and exploration. Self-consoling behavior marks the beginning of autonomy. A crying infant tries to bring the hand to the mouth, then sucks and stops crying. Sucking facilitates the infant’s ability to regulate the level of arousal. Infants who engage in frequent hand sucking cry less than other infants. Sucking on sucrose may reduce further a reaction to a painful stimulus possibly through a neurally mediated pathway. As infants mature, the repertoire for self-consolation expands to include rhythmic behaviors, such as body rocking (20% of all children) and head banging or rolling (6% of all children); these behaviors usually begin between 6 and 10 months of age.

Clinical Implications The child’s struggles for autonomy and mastery produce varying degrees of discord depending on the temperamental style of the child and the characteristics of the caregivers. Clinicians’ use of the construct of temperament (i.e., the how of behavior) can facilitate successful negotiation of this developmental stage.

Temperament Children’s behavior can be described as consisting of three components: (1) the what of behavior, (2) the why of behavior, and (3) the how of behavior. The latter can be considered temperament, children’s behavioral style, which is different than what they do or why they do it (see Chapter 80). Although not fixed, temperamental characteristics are likely to be consistent over time, especially when the interplay between the individual and the environment remains relatively stable.

Clinical Implications A poor fit between the child’s temperament and the demands and expectations of parents and other caretakers may cause struggles and parental distress, while a good fit makes life easy for everyone (see Chapter 80). A classic example is predictability of biologic functioning. A child with predictable rhythms sleeps, eats, and eliminates at roughly the same time each day. A child with irregular rhythms in these areas can be confusing to many parents. Approach or withdrawal refers to the nature of a child’s initial response to new stimuli (e.g., new foods). A child with positive approach likes new foods, enjoys the first bath, approaches strangers regularly,

54

SECTION 2  Life Stages

and sleeps well in new surroundings. A child with a negative or withdrawal approach rejects the first taste of infant cereal, will not fall a sleep in strange beds, and keeps a distance from new people. This lack of predictability can confuse parents and thus lead to feeding and sleeping difficulty. When combined with the temperamental characteristic of slow adaptability, negative responses to selected stimuli can continue over a long period of time. High-intensity responding children cry loudly when distressed; low-intensity responsive children whimper or cry softly. In the face of a challenging temperamental characteristic parents of such children tend to blame themselves, believing they must be doing something wrong. When more than one difficult characteristic cooccurs, parental competency and patience are challenged. It is important that clinicians communicate to parents that it is the child’s temperament, not their fault nor their child’s so-called bad behavior. Clinical management should focus on reinterpreting the child’s behavior from adjectives such as naughty or disobedient to manifestations of temperament such as irregular biologic rhythms or slowly adaptive. A better fit between parents’ expectations and children’s behavior can be created if parents understand their child’s temperament and how to avoid unnecessary expectations and subsequent conflict. The clinician may not be able to change a child’s inherent temperament but can change the parents’ expectations and behavioral responses to them to create a better fit.

Consequences/Biologic Embedding of Early Adversity A landmark retrospective study demonstrated that adverse childhood experiences (ACEs) predicted poor long-term health and behavioral outcomes, underscoring the importance of the life-course approach for prevention and early intervention (Felitti et al., 1998) (see Chapters 2 and 15). This finding has led to decades of research that has confirmed this finding and elucidated pathways of how social factors occurring in utero and in the first years of a child’s life play a role in establishing a lifelong trajectory of physical and mental health problems. The impact of adversity on infants occurs within the context of caregiver-infant relationship. Caregivers with mental health problems such as depression, addiction, and posttraumatic stress disorder are at particular risk of impaired interaction with infants, in turn leading to alterations in the developing brain and immunologic, metabolic, and cardiovascular systems of the infant (Nelson et al., 2020) (see Chapter 5). These alterations may lead to negative developmental outcomes, including subsequent learning and behavior problems, obesity, heart disease, depression, substance abuse, and higher rates of school dropout and unemployment (Berens et al., 2017). Differences in impact are based on intensity, frequency, duration, and timing of adverse events as well as the context of a child’s life (e.g., presence of positive supports) (Nelson et al., 2020) and individual neurophysiologic characteristics, especially hypersensitivity to stimuli (Boyce, 2016; Nelson et al., 2020). These findings have generated approaches to

clinical screening, identifying protective and resiliency factors, and developing and evaluating interventions (Shonkoff & Garner, 2012). Efforts to mitigate the impact of adversity in early childhood often focus on caregiver-child interactions, as responsive interactions buffer the impact of social adversity (Bick et al., 2015). Events during early life may be preferentially embedded due to the presence of so-called sensitive periods during infancy and early childhood (i.e., windows of rapid development and heightened responsiveness to both negative and positive experiences). A compelling example of sensitive periods comes from the study of high-quality foster care as an intervention for early institutionalization with its accompanying lack of responsive caregiving in Bucharest, Romania (Nelsonet al., 2014). Children who remained institutionalized suffered lasting effects on brain development and later health, including decreased brain activity, reduced gray and white matter volume, and dysregulation of their stress response systems (Nelson, 2017). Children born in institutionalized care who were placed in high-quality foster care before age 2 years had significantly improved outcomes.

MOTOR DEVELOPMENT Fine Motor Development It is in large part through motor acts that infants expand beyond their vision, their experience of the world, and further develop and express perception, emotion, and cognition. Between 2 and 3 months of age, the weakening of the obligatory asymmetric tonic neck reflex and expansion of accommodative abilities permit infants to look at their hands and touch one hand with the other. During the third month of life, as the world of close proximity comes into focus, infants begin swiping at objects with loosely fisted hands. At this stage, infants swipe with one hand only, but by 6 months of age they reach persistently toward objects in the midline, at first with both hands and then with one. Between 3 and 6 months of age, the coordination of grasping and reaching gradually comes under visual guidance and voluntary control. During early reaching efforts, grasping may occur, but only after the hand has contacted the object. After 6 months of age, infants begin to shape their hands for grasping in the horizontal or vertical plane of the desired object immediately before touching it. By 9 months of age, shaping of the hand occurs before the object is reached. At 1 year old, children orient the hand in the appropriate plane when starting to reach for an object. When the infant can reliably obtain an object, clumsy wholehand grasping becomes progressively refined. At 4 months of age, the infant holds an object between fingers and palm; at 5 months of age, the thumb becomes involved. By 7 months of age, thumb and fingers can grasp and retain an object without resting on the palm at all. At this time, the infant uses a raking motion between the thumb and several fingers to scoop up small objects. By 9 months of age, the infant manipulates small objects with a neat pincer grasp, using thumb and forefinger perpendicular to the surface. Every nook and cranny are

 

CHAPTER 6 Infancy

now accessible to the infant’s exploration, which increases the chance for injury or accidental ingestion.

Gross Motor Development Three processes enable the infant to attain upright posture and the ability to move the limbs across the body’s midline: (1) balance of flexor and extensor tone, (2) decline of obligatory primary reflexes, and (3) evolution of protective and equilibrium responses. First, the flexed newborn posture gradually unfolds until 6 months of age; infants can extend their legs so far that they can put their toes in their mouth. Second, the decline and integration into voluntary patterns of initially obligatory primary reflexes (e.g., the Moro or asymmetric tonic neck reflex) permit the infant more flexible movement. A 1-month-old infant cannot look to one side or the other without assuming the fencing posture of the asymmetric tonic neck reflex. Third, to sit and walk, the infant must establish equilibrium and protective responses (e.g., the parachute reflex).

Clinical Implications The age range for normal development of motor skills is wide. An important tenet is not to focus on a rigid timetable of motor milestones but to appreciate the trajectory of the ongoing process. Generally, infants learn to maintain new positions weeks to months before they can attain them voluntarily. Many infants at 6 months of age sit briefly unsupported if placed in that position but cannot get themselves into a sitting position until 8 months of age. Most children cannot walk independently until 4 to 5 months after they have learned to pull themselves up to a standing position. The developmental route to walking varies with the child’s tone and temperament. Temperamentally inactive children or children who adapt slowly may not attempt independent walking until long after they are neurologically able to do so. Conversely, very active infants start taking steps as soon as they can stand. During the second year of life, these active infants rarely walk if they can run. Parents are often relieved to know that within the wide range of normal variation there is no correlation between intelligence and the age at which gross motor skills are acquired. No single motor skill can be used as an indicator of neurologic integrity or dysfunction. Generally, the clinician should investigate when delayed milestones are associated with global delays, opisthotonic posturing, persistent fisting of the hands, consistent disuse of a limb or side of the body, obligatory and prolonged infantile reflexes, or failure to develop a neat pincer grasp by the first birthday. The diagnosis of cerebral palsy and other motor disabilities is described in Chapter 39.

COGNITIVE DEVELOPMENT The developmental theories of Jean Piaget provide a useful clinical framework for understanding infant cognitive growth (see Chapter 3). Piaget believed that infants are active initiators, not passive recipients; they begin to modify behavior

55

in response to environmental demands. Infants can take in (assimilate) information and use it to revise (accommodate) existing mental structures, which Piaget called schemas. Piaget organized cognitive development during the sensorimotor period (birth to 2 years of age) into six stages (Table 6.3). Each stage represents a temporary equilibrium between the infant’s skills and the environment’s challenges. A toy that is too familiar no longer engages the toddler who prefers the greater challenges posed by the contents of the kitchen cupboard. Conversely, a completely unsolvable problem (e.g., a crayon presented for a 9-month-old infant to use) does not hold the infant’s interest. Children are active learners; their cognitive development requires opportunities for exploration and manipulation that are neither too easy nor too hard. Two core concepts of infant cognition, object permanence and causality, develop in the first year of life, and play is important in advancing both.

Object Permanence Newborns behave as though the world consists of shifting images that cease to exist when they are no longer perceived. “Out of sight, out of mind” is a description of the infant’s world during the first stage of sensorimotor development (stage I). By 2 months of age, infants continue to look expectantly at a person’s empty hand after an object has been dropped from sight (stage II). Between 4 and 8 months of age, infants locate a partly hidden object and visually track objects through a vertical trajectory. If infants see an object being hidden, however, they do not search for it (stage III). Between 9 and 12 months of age, infants can find an object that they see hidden (stage IV). At this age, however, infants cannot retrieve an object that is moved in plain view from one hiding place to another. By 18 months of age, infants reliably find objects after multiple changes of position as long as those changes are observed, but they cannot deduce the whereabouts of an object if they do not see it being moved (stage V). By age 2 years, toddlers have sufficient symbolic abilities to infer a hidden object’s position from other cues without actually observing it being moved to that position (stage VI). People and things now reliably exist for toddlers as stable entities whether or not they are perceptually present—an important achievement that has implications for separation and attachment behaviors.

Causality Piaget observed an orderly sequence of changes in the child’s understanding of causal relationships over the first 2 years of life. First, infants learn to recreate satisfying bodily sensations by maneuvers, such as thumb sucking (primary circular reaction). At about 3 months of age, infants begin to use causal behaviors to recreate accidentally discovered, interesting effects (secondary circular reaction). Infants at this age repeatedly kick the mattress once they have discovered by chance that this behavior sets in motion a mobile above the bed. During the second year of life, toddlers become experimenters, intent on causing novel events such as winding up a toy to make it move instead of just pushing it (tertiary circular reactions).

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SECTION 2  Life Stages

TABLE 6.3 Piagetian Stages  

Piagetian Stage

Age

Object Permanence

Receptive Language

Expressive Language

I

Birth–1 mo

Shifting images

Generalization of reflexes

Turns to voice

Range of cries (hunger, pain)

II

1–4 mo

Stares at spot from which object disappeared (looks at hand after yarn drops)

Primary circular reactions (thumb sucking)

Searches for a human speaker with eyes

Cooing; vocal contagion

III

4–8 mo

Visually follows dropped object through vertical trajectory (tracks dropped yarn to floor)

Secondary circular reactions (recreates accidentally discovered environmental effects [e.g., kicks mattress to shake mobile])

Same behavioral repertoire for all objects (bangs, shakes, puts in mouth, drops)

Responds to own name and to tones of voice

Babbling; four distinct syllables

IV

9–12 mo

Finds an object after watching it hidden

Coordination of secondary circular reactions

Visual motor inspection of objects; peek-a-boo

Listens selectively to familiar words; responds to “no” and other verbal requests

First real word; “jargoning”; symbolic gestures (shakes head “no”)

V

12–18 mo

Recovers hidden object after multiple visible changes of position

Tertiary circular reactions (deliberately varies behavior to create novel effects)

Awareness of social function of objects; symbolic play centered on own body (drinks from toy cup)

Can bring familiar object from another room; points to parts of body

Many single words—uses words to express needs; acquires 10 words by 18 mo

VI

18 mo–2 yr

Recovers hidden object after invisible changes in position

Spontaneously uses nondirect causal mechanisms (uses key to move wind-up toy)

Symbolic play directed toward doll (gives doll a drink)

Follows series of two or three commands; points to picture when named

Telegraphic 2-word sentence

 

Causality

Play A child’s play provides a window through which we come to better understand the child. For example, an infant’s handling of objects also reflects a progressive understanding of the world. At 5 to 6 months of age, an infant can reliably reach and grasp attractive objects. At this stage, the infant subjects all toys to the same behavioral repertoire; a toy car, a bell, and a spoon all are mouthed, shaken, banged, and dropped. By 9 months of age, the infant systematically manipulates the object to inspect it with eyes and hands in all orientations, showing the cognitive ability to process information simultaneously instead of sequentially. By the first birthday, the infant shows understanding of the socially assigned function of objects (e.g., pushing a toy car, ringing a bell). Next, early representational play, which reflects a stable concept of objects, appears. At first, such play centers on the child’s own body as the child “drinks” from a toy cup or

Play

puts a toy telephone to the ear. Between 17 and 24 months of age, the child’s thought and play become less egocentric. Now the child offers the drink to a doll. When the child becomes facile in the use of symbols (24–30 months of age), truly imaginative play begins with the onset of symbolic play.

COMMUNICATION Communication consists of speech, language, and complex nonverbal and pragmatic skills (see Chapter 44). Infants acquire reciprocal communication through interaction with responsive sources. Screen media have negligible effects on early language learning in infants. To gain the child’s attention, parents, talk to their infant is saturated with affect. Children who are sung to throughout the day often learn these “musical words” early because of the strong affect and melody with which they are presented. Parents and infants

 

CHAPTER 6 Infancy

begin to construct the basis for language before infants can understand or produce a single word. During the first year, through games and caregiving rituals, children learn to take turns communicating. With vocalization and nonverbal cues, caregivers and infants learn to direct each other’s attention to interesting environmental events, to signal needs and feelings. Between 1 and 3 months of age, the infant develops a range of nondistress vocalizations, onomatopoetically described as cooing. The caregiver’s contingent responses to these early vocalizations shape the infant’s vocalization into back-and-forth conversation-like patterns. By 4 to 6 months of age, infants can produce vowel sounds and some consonants called babbling. By late in the first year, infants produce repetitive two-syllable combinations, such as mama and dada, although at this time these combinations have no symbolic reference. Soon thereafter, the first true words usually refer to parents and other family members because the infant’s concept of object permanence occurs for people before inanimate objects. Between 10 and 15 months of age, infants speak their first real words or expressive language. During this time, infants also begin to use symbolic gestures, such as shaking the head to indicate “no.” Most 1-year-old infants respond to simple commands, such as “bye-bye” or “no-no,” and most 15-month-old children can point to one or two body parts indicating receptive language skills.

Clinical Implications The rate and quality of the infant’s progression through linguistic development is sensitive to caregiving practices. Children who hear more language will develop language more quickly than children who have limited input. Clinicians can model talking to infants. Pronunciation is not a focus of concern for children younger than 3 years of age since there is a developmental progression of letter sounds children can make up to age 6 years. Isolated speech difficulties from either anatomic or neurologic abnormalities may be seen in children with normal language skills. Such children often have difficulty with other oral-motor behaviors, such as eating or blowing kisses, or with other fine motor skills. Through exposure to books, signs, and songs, infants gradually become exposed to more words. Book sharing establishes the enjoyable joint activity of pointing and naming of objects, which is the first step in early literacy (Zuckerman & Needlman, 2020).

PHYSICAL GROWTH Caregivers must provide infants with nutrients to sustain the rapid growth of body and brain, which is greater during the first 2 years of life than at any other time after birth. Seventy percent of adult brain growth occurs by 2 years. At birth, the infant’s small, elongated mouth, combined with forward and backward movements of the tongue, squeeze the nipple creating positive pressure so that milk is suckled. By 3 months infants become progressively efficient at true sucking, which employs negative pressure to obtain milk from the nipple. By 9 to 12 months of age, the development of the pincer grasp

57

permits the child to eat finger foods followed by the ability to use a spoon and hold a cup or bottle. Parental concerns about messiness, decreased appetite, and selective tastes emerge at this time.

Clinical Implications Newborn boys are larger than newborn girls at birth, and they continue to grow at a faster rate during the first 3 to 6 months of life. After the first 6 months of life there are no sex differences in infant growth rate. A severely decreased rate of weight gain for children under 2 years usually reflects inadequate nutrition or complicating illness, not immutable genetic potential, and should be evaluated. Two-thirds of normal infants cross percentile measurements in length, while their genotype for height is established by 2 years of age. Premature infants should be evaluated according to their corrected age (current postnatal age minus the number of weeks the child was premature).

CONCLUSION An understanding of infant development and behavior and parental attributions and responses provides a transactional framework to nurture the child’s primary attachments involved in the beginnings of internal security, self-control, empathy, and learning. There are vast cultural differences in the approaches caregivers take with children, and there are many different ways to raise a healthy and well-adjusted infant. Moreover, there is wide individual variation in the age at which children reach developmental milestones in infancy. Clinicians can support the range of approaches that families and caregivers use with infants, provided that they are grounded in responsive and respectful practices. Clinicians play a critical role in responding to caregiver concerns to promote a healthy psychosocial environment for the infant. In addition, identification of developmental or behavioral problems through developmental surveillance, screening, assessment, and treatment can often prevent or ameliorate later problems.

REFERENCES Ainsworth. M. D. S. (1979). Infant-mother attachment. American Psychologist, 33, 932. Berens, A. E., Jensen, S. K. G., & Nelson, C. A. (2017). Biological embedding of childhood adversity: From physiological mechanisms to clinical implications. BMC Medicine, 15(1), 135. Bick, J., Zhu, T., Stamoulis, C., Fox, N. A., Zeanah, C., & Nelson, C. A. (2015). Effect of early institutionalization and foster care on long-term white matter development: A randomized clinical trial. JAMA Pediatrics, 169(3), 211–219. Boyce. W. T. (2016). Differential susceptibility of the developing brain to contextual adversity and stress. Neuropsychopharmacology, 41, 142–162. Brazelton. T. B. (1995). Neonatal Behavioral Assessment Scale (3rd ed.). Mac Keith Press. Felitti, V. J., Anda, R. F., Nordenberg, D., et al. (1998). Relationship of childhood abuse and household dysfunction to many of

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the leading causes of death in adults. The Adverse Childhood Experiences (ACE) Study. American Journal of Preventive Medicine, 14(4), 245–258. Ferber. R. (2006). Solve your child’s sleep problems: New, revised, and expanded edition. Simon & Schuster. Fireman. L. (2006). Colic. Pediatric Reviews, 27, 357–358. Greenfield. P. (2007). Cultural change and human development. New Directions for Child & Adolescent Development, 1999(83), 37–59. Kuhl, P. K., Ramírez, R. R., Bosseler, A., Lotus Lin, J. F., & Imada, J. (2014). Infants’ brain activity in response to speech. Proceedings of the National Academy of Sciences, 111(31), 1238–11245. Mahler, M., Pine, F., & Bergman, A. (1975). The psychological birth of the human infant. Basic Books. Nelson. C. A. (2017). Hazards to early development: The biological embedding of early life adversity. Neuron, 96(2), 262–266. Nelson, C. A., Bhutta, Z. A., Burke Harris, N., Danese, A., & Samara, M. (2020). Adversity in childhood is linked to mental and physical health throughout life. BMJ, m3048. https://doi. org/10.1136/bmj.m304. Nelson, C. A., Fox, N. A., & Zeanah, C. H. (2014). Romania’s abandoned children: Deprivation, brain development and the struggle for recovery. Harvard University Press. Nugent, J. K., Keefer, C. H., Minear, S., Johnson, L. C., & Blanchard, Y. (2007). Understanding newborn behavior and early relationships: The Newborn Behavioral Observations (NBO) system handbook. Paul H Brookes Publishing. Pearson, S., & Boyce, W. T. (2004). The vulnerable child syndrome. Pediatrics in Review, 25(10), 345–349.

Sameroff, A. J., & Chandler, M. J. (1974). Reproductive risk and the continuum of caretaking causality. Review of Child Development Research, 4, 187–244. Scher. A. (2005). Infant sleep at 10 months of age as a window to cognitive development. Early Human Development, 81, 289–292. Shellhaas, R. A., Burns, J. W., Hassan, F., Carlson, M. D., Barks, J. D. E., & Chervin, R. D. (2017 ). Neonatal sleep-wake analyses predict 18-month neurodevelopmental outcomes. Sleep, 40(11), zsx144. https://doi.org/10.1093/sleep/zsx144. Shonkoff, J. P., & Garner, A. S. (2012). Committee on Psychosocial Aspects of Child and Family Health; Committee on Early Childhood, Adoption, and Dependent Care; Section on Developmental and Behavioral Pediatrics. The lifelong effects of early childhood adversity and toxic stress. Pediatrics, 129(1), e232–e246. Small Moments, Big Impact. (2021). https://www. smallmomentsbigimpact.com. Zuckerman, B., & Needlman, R. (2020). 30 years of reach out and read: Need for a developmental perspective. Pediatrics, 145(6). Zuckerman, B., & Zuckerman, P. (2019). Parental self-understanding: Key to preventing problems. In Zuckerman Parker handbook of developmental and behavioral pediatrics for primary care (4th ed.). Wolters Kluwer.

7 Toddlerhood and the Preschool Years Rosmary Ros-DeMarize, Silvia Pereira-Smith, and Michelle M. Macias

For additional material related to the content of this chapter, please see Chapters 41, and 44.

VIGNETTE Nicky is a handsome, healthy 3-year, 6-month-old boy who was referred for “behavior and developmental concerns” by his primary care clinician. His parents are worried because he is having trouble communicating and becomes easily upset. Nicky began using single words at 12 months of age, phrases shortly before his second birthday, and short sentences by about 36 months of age. He currently has considerable difficulty expressing his thoughts. In addition, he is only about 75% intelligible to his parents and 50% intelligible to strangers. He throws tantrums that last about 30 minutes several times per week, typically triggered when he is unable to communicate effectively, is not getting his way, or experiences unexpected changes in his routine. Nicky sleeps through the night in his own bed, feeds himself with utensils, and helps with dressing. He is toilet trained for urine and stool during the day. He runs smoothly, rides a tricycle, and likes to draw with a crayon. He began preschool about 2 months ago. His teachers note that he is affectionate with the adults and his peers in the classroom, is motivated by praise, and is progressing with early preacademic skills such as counting and letter recognition. However, he does not remain seated during classroom activities, refuses to participate in selected classroom activities, especially answering questions at circle time, and has been aggressive with teachers on occasion, again mostly at circle time.  

INTRODUCTION This chapter describes developmental and behavioral considerations during toddlerhood and the preschool period. For our purposes here, toddlerhood refers to the period between 18 and 36 months of age, and the preschool period refers to the period between 3 and 5 years of age. Hallmarks of both periods include significant increases in receptive and expressive language skills, growth of social-emotional development and play, and increases in adaptive skills. The chapter will: 1. Review developmental domains (e.g., communication, motor, social-emotional, cognitive, adaptive) as they relate to the toddler and preschool periods 2. Review overarching concepts important for development such as self-regulation and school readiness 3. Discuss clinical implications for providers, including screening/assessment and appropriate recommendations for parents









DEVELOPMENTAL DOMAINS The toddler and preschool years are characterized by remarkable changes in development, with acquisition of a repertoire of skills critical to a child’s overall development and functioning. Table 7.1 reviews developmental expectations by domain. Looking broadly, children enter toddlerhood completely dependent on caregivers for almost all aspects of their lives and leave the preschool years with elaborate, well-developed skills. This remarkable acquisition of skills is well characterized in the Erikson stages of development (see Chapter 3). In the toddler years children seek autonomy. If that desire is not well negotiated, then they are left with a sense of shame. In the preschool years children demonstrate increasing initiative. If they cannot succeed with self-directed activities, then the result is a sense of guilt.

Communication The development of communication involves evolution of both speech and language (see Chapter 44) and supports other important developments. The capacity to understand language and effectively communicate intentions, ideas, and emotions is necessary for virtually all aspects of learning. Receptive language advances result in the toddler learning from what people say in addition to what they do. Toddlers quickly learn that speech is a more efficient means of communication than gestures or facial expressions alone. Between 18 and 24 months of age, astounding changes in communication occur as toddlers experience a “word explosion,” rapidly moving from using single words to combining words into phrases and then sentences. They use language to communicate their desires and emotions and to learn what is going on around them. By 3 years of age, children talk about past experiences and use language to pretend. By 4 years of age, children can tell stories and express their thoughts and ideas. Because young children think faster than they can talk, up to about 3.5 years of disfluent speech (known as developmental or typical disfluency) sometimes results in whole word or phrase repetition. Language acquisition involves complex interactions between biologic, psychosocial, and environmental factors. Wide variation is found in the rate of speech and language development. Yet, children who learn two languages simultaneously generally follow the same pattern of language development as monolingual language learners (Li, 2005). Although, 59

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SECTION 2  Life Stages

TABLE 7.1 Developmental Milestones by Domains  

Age

Communication

Gross Motor

Fine Motor

Adaptive

Social-Emotional

Cognitive

18 mo • Uses about 6–10 words (other than names) • Uses giant words (e.g., “thank you”), then two-word phrases (19–24 mo) • Identifies at least two body parts • Points to at least one picture in book

• Walks up stairs with two feet per step with hand held • Sits in small chair • Carries toy while walking • Throws ball a few feet while standing • Runs with toddler gait

• Scribbles • Imitates vertical stroke • Builds three/ four-cube tower

• Helps dress and undress self • Begins to scoop with spoon

• Engages with others for play • Points to object of interest to draw attention to it • Turns and looks at adults if something new happens • Gives kisses

• Matches pairs of objects • Copies doing chores

2 yr

• Uses 50 words • Combines two words into sentence • Follows twostep command • Points to ~10 pictures in book • Speech is 50% intelligible to strangers

• Walks down stairs with two feet per step holding rail • Kicks ball • Runs with coordination

• Stacks objects • Turns book pages • Uses hands to turn objects (such as knobs, toys, lids)

• Plays alongside other children (parallel) • Plays with more than one toy at the same time

• Uses toys for simple play, like pushing a toy car • Tries to use switches or buttons on a toy • Sorts objects • Matches objects to pictures

• Uses pronouns correctly • Understands “just one” • Follows twostep directions • Follows two prepositions (in, on)

• Begins to walk up stairs with alternating feet • Jumps in place • Walks backward 10 steps • Runs well without falling









































 





















• Takes off some clothing • Scoops and feeds self with spoon, spilling little







 















2.5 yr









• Grasps crayon with thumb and fingers instead of fist

• Urinates in toilet • Spears food with fork







• Engages in pretend or imitative play • Uses objects to pretend, like feeding a block to a doll as if it were food



• Shows simple problemsolving skills, like standing on a small stool to reach something • Names at least one color • Matches colors





3 yr  

• Uses three word sentences • Speech is 75% intelligible to strangers • Understands simple prepositions (e.g., on, under) • Answers “what” and “where” questions







• Pedals tricycle • Ascends stairs alternating feet • Jumps forward • Balances on one foot for 3 s







 

• Copies a single circle • Cuts with child scissors • Unbuttons large button • Strings small beads







• Urinates independently • Puts on coat, jacket, or shirt by self • Eats independently





• Plays cooperatively and shares • Early imaginative play



• Does puzzles with 3 or 4 pieces • Picks the bigger of two items when asked • Draws 2–3 part person • Understands big/small • Knows age and gender









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CHAPTER 7 Toddlerhood and the Preschool Years

TABLE 7.1 Developmental Milestones by Domains—cont’d  

Age

Communication

Gross Motor

Fine Motor

Adaptive

Social-Emotional

Cognitive

4 yr

• Uses four-word sentences • Speech is 100% intelligible to strangers • Answers “when” questions • Tells stories • Follows threestep command • Points to things that are same vs. different

• Gallops • Balances on one foot for 4–8 s • Hops on one foot two/three times • Standing broad jump 1–2 ft • Throws ball overhead 10 ft

• Draws cross • Copies square • Unbuttons and buttons medium-size buttons • Grasps pencil with thumb and fingers instead of fist

• Independent for bowel habits • Brushes teeth • Dresses and undresses with minimal assistance

• Engages in well-developed imaginative play • Engages in group play • Labels emotions in self (happy, sad, fear, anger)

• Knows full name • Names at least a few colors of items • Understands simple time words (yesterday, tomorrow, morning, night) • Knows what comes next in a well-known story • Draws a person with 4+ body parts

 















 





 























 













5 yr  

• Understands left and right on self • Understands adjectives • Produces rhyming words • Answers “why” questions • Defines simple words • Tells stories with beginning, middle, end





• Balances for 8–10 s on one foot • Jumps backward • Skips

 



• Writes first name • Copies triangle • Can button 1-in buttons













• Completes simple chores well • Bathes independently • Dresses independently





• Plays games with rules or turn taking with other children • Likes to sing, dance, or act for others • Tries not to hurt others while playing • Apologizes for mistakes







• Counts to 10 • Identifies some single-digit numbers and letters • Uses simple time words (yesterday, tomorrow, morning, night) • Keeps attention for at least 5 to 10 min during activities







 

Adapted from Accardo & Capute, 2005; Aylward, 1995; Beery et al., 2010; Bly, 2000; Glascoe et al., 2016; Oller et al., 2012; Robins et al., 2014; Squires et al., 2009. Note. These milestones generally represent the mean or average age of performance of these skills when available.

on average, girls use more words than boys between 12 and 30 months of age, boys are only modestly behind and typically develop words within the accepted time frame (Leaper & Smith, 2004). Delays in speech and language development are rarely due solely to bilingual exposure or to sex. Toddlers enter the word combination period at around 18 to 24 months of age. Children begin combining two-word phrases once they spontaneously use enough single words to label, request, and comment. Initially, word combinations may be holistic phrases or giant words; these are phrases the child often hears used together such as “thank you” or “let’s go.” Next, the child combines words into novel phrases such as “more juice” or “bye-bye mama.” By 24 months of age, toddlers combine words into two-word sentences with a verb + noun, such as “eat cookie” or “read book” (Oller et al., 2012). Following the initial word combination period is the sentence formation period. A rough rule of thumb is that 90% of children use two-word sentences at 2 years, three-word sentences by 3 years, and four-word sentences by 4 years of age (Flipsen, 2006). Sentences become more complex as the

child’s comprehension of grammar and language advances. By 3 to 4 years of age, children comprehend and use prepositions, adjectives, and adverbs and begin to ask and answer questions. Semantics (word meanings) and syntax (grammar) improve over time, and by 5 years of age children completely master grammatical tense marking. As children learn the rules of social communication, pragmatic language skills are refined. By 4 to 5 years of age, most children regularly use language to discuss emotions and feelings (Oller et al., 2012) (see Social-Emotional Development, later). Receptive language also develops in an orderly fashion during these years. A child’s receptive vocabulary is much larger than the number of words used expressively. The rule of thumb is that a child should be able to follow two-step directions by 2 years of age, two prepositional commands by age 2.5 years, and three-step commands by 3 years of age. Children master sounds at different ages depending on the difficulty of producing the sound. More difficult sounds such as consonants /j/, /r/, /l/, /v/ and blends may not be mastered until the end of the preschool period. A formula for expected

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intelligibility level of toddlers and preschoolers to unfamiliar listeners is: age in years/4 × 100 = % understood by strangers. Therefore by 4 years of age, a child should be 100% intelligible to strangers even if the child has not yet mastered all consonants and blends (Flipsen, 2006).

Motor Skills Gross Motor Skills Progression of gross motor abilities grants toddlers and preschool-aged children the power to explore their environment, which in turn allows them to enhance other skills such as the development of autonomy. By 18 months of age, toddlers are typically walking. With practice, their gait becomes steadier, and their stance narrows, due to improved core tone. At age 2 years, improved balance provides children with the ability to run, climb, kick a ball, and walk up or down stairs (initially 2 feet per step, then alternating by the end of this year). By the third birthday, children’s enhanced balance skills allow them to stand on one leg, jump, and ride a tricycle. Over the next 2 years, gross motor skills become more complex; they acquire the ability to hop, skip, jump backward, and ride a bicycle. There is a wide variation in milestone achievement in gross motor skills, especially in the advanced skills (e.g., some children will always struggle with balancing on a bicycle). Regression in gross motor skills is an unusual finding and warrants an evaluation by a physician.

Fine Motor Skills Fine motor skill progression in this developmental period allows children to begin manipulating their environment. Abilities that are developed in the beginning of toddlerhood include spontaneous scribbling and stacking three cubes to make a tower, followed by imitation of vertical or circular strokes at age 24 months. Hand preference is typically established between 2 and 3 years of age. Children put these fine motor skills into their functional activities. At about age 2, they assist with undressing and dressing. Their feeding skills also improve; they progress from feeding themselves with their fingers to using utensils, such as spearing food with a fork. At 30 months of age, a more mature pencil grasp is developed, which involves holding a pencil between the thumb and forefinger. Children can copy a circle and cut with scissors at age 3 years, copy a cross at 3.5 years, copy a square at 4 years, and copy a triangle at 5 years. It is important to note that writing skills not only include fine motor abilities but are also influenced by language, memory, and attention. In regard to dressing, children can undress themselves (usually socks and pants first, then shirts) at 3 years, button and place shoes on the correct foot at 4 years, and tie shoes by 5 years.

Adaptive Functioning Autonomy and Fear The transition from dependence on caregivers to the development of autonomy is often first noted after children begin walking and becomes more pronounced as they improve motor skills in toddlerhood. Temperament plays a prominent role in this process (see Chapter 80); some children are risk averse and

stay close to familiar adults, while others are sensation seeking and may wander far from their home base. Other developmental skills, including cognitive abilities and communication, also facilitate this progression. Children become increasingly able to engage with their environment beyond their caregivers. Though children generally seek autonomous discovery, exploring “the unknown” may trigger fear. That fear causes them to “check in” with their caregiver(s) who can then provide them with feelings of familiarity and safety. The need for reassurance can be confusing for caregivers as they try to balance granting their children freedom to explore while providing them comfort when they become overwhelmed by fear or curiosity. Anticipatory guidance regarding the development of autonomy and accompanying fear is multifaceted. It should include implementation of safety precautions given that children may test boundaries and place themselves in potentially unsafe situations (e.g., climbing on high furniture). It should mention that children may seek reassurance from caregivers, even becoming physically clingy if their exploration triggers fear. Substantial cultural differences characterize expectations of autonomy in toddlers and preschool children. For example, Eurocentric cultures tend to emphasize autonomy while African, Asian, Latin American, and Indigenous cultures often value interdependence.

Toilet Training Readiness for toilet training often emerges after 18 months of age, and attainment of this important skill is completed by 3 years of age for many children. Readiness is signaled by an interest in sitting on a toilet and is often accompanied by a desire to not be soiled. Developmental skills that support the toilet training process include the ability to communicate regarding the need to use the toilet and motor skills to remove clothing and sit on the toilet. At this age, children’s ability to imitate others using the toilet also facilitates their learning. Training consists of both the child learning internal elimination cues and caregivers educating the child on the expected steps for completing this complicated task. Learning elimination cues tends to occur more quickly for girls than boys. The methods of caregiver education are strongly influenced by cultural factors (e.g., elimination communication). Caregivers can often feel frustration during this process. Ultimately it is the toddler who must learn to control body movements. Many children respond well to a toileting schedule that is timed with their eating schedule to take advantage of the gastrocolic reflex. A reward system may be used during the toilet training process (see Chapter 4). However, it should reward cooperative tasks, such as sitting on the toilet, and not only successful completions. Some children prefer a child-size toilet, whereas others favor a standard toilet. It is highly recommended that children have a footstool provided if they use the standard toilet to help prop their legs, to allow for natural defecation positioning. Assessment and intervention may be indicated for children who have had minimal progress with toilet training by age 3 years since it may be an indication of a serious condition. The most common medical cause for delayed toilet training

 

CHAPTER 7 Toddlerhood and the Preschool Years

is functional constipation, which can be diagnosed via history and physical examination. Interventions may consist of caregiver education about constipation, disimpaction of stool, subsequent maintenance of regular bowel movements (possibly with medication), and behavior strategies to improve toileting habits and behaviors (e.g. having consistent bowel movements inside the bathroom regardless if the child is on the toilet or in a diaper) (Law et al., 2016) (see Chapter 69). Teaching children with neurodevelopmental conditions to use the toilet should include consideration of their cognitive level; they may not yet possess the fundamental developmental skills needed for toilet training when they reach the appropriate chronologic age. Diagnostic criteria for encopresis include age of at least 4 years and at least 5 years for enuresis (American Psychological Association [APA], 2013) (see Chapter 69).

Feeding and Eating Early healthy eating patterns can have a long-lasting impact on future health. It is not uncommon for children to become more selective during the toddler period than they were in infancy, as they flex their growing autonomy. They also may eat less during the toddler-preschool years than they did during infancy because of a decreasing rate of growth. Health care providers should share the importance of a varied diet and discuss age-appropriate portions with caregivers. However, socioeconomic status and culture may play roles in many aspects of eating, including food choices, food variety, and expectations for mealtime behavior. Federal grants and programs are available to assist families of young children gain access to healthy food and to avoid food insecurity. Children with neurodevelopmental conditions such as autism spectrum disorder (ASD) may have highly restrictive feeding patterns that require a multidisciplinary approach for treatment. The evaluation of extreme or persistent feeding or eating difficulties, such as highly restricted food choices, may require a team approach: examination by a health care provider for possible contributing medical conditions, assessment of nutritional needs by a dietician, evaluation of oromotor skills by a speech-language pathologist, and assessment of orosensory issues by an occupational therapist.

Sleeping Though maturation of sleep architecture develops throughout childhood, sleep patterns should become consistent by toddlerhood, including the ability to fall asleep independently and sleep through the night. Night terrors and nightmares may present during toddlerhood and the preschool years. Most of the sleep-related issues that present in this era have a behavioral component (see Chapter 70). They may involve bedtime refusal or resistance and prolonged night awakenings that require caregiver involvement. Consistency, to the extent possible, is key. A child’s bedtime and wakeup time should be about the same time every day. Sleep hygiene is also important. A 30-minute bedtime routine that is the same every night should consist of low-stimulation activities such as a warm bath and reading a book in the room where the child sleeps. Screen time should be limited 1 to 2 hours before bed, with  

63

all screens (including television, phones, and tablets) out of the child’s bedroom (see Chapter 21). Naps should be geared to the child’s age and developmental needs; long naps or too many naps can result in sleeplessness at night. Effective behavior modifications at bedtime for behavioral insomnia include issuing a limited number of “bedtime passes,” use of written or visual schedules for bedtime routines, and caregiver redirection to return to bed without any reinforcement. The diagnostic workup for children presenting with sleepwalking, night terrors, or nightmares requires a focused history (including inquiry of family history of childhood parasomnias), a good sleep diary to assess for sleep deprivation, plus a physical examination. Cultural differences in regard to sleep practices are common (e.g., bedsharing) and should be explored with families to assist with shared decision making about sleep practices (Owens, 2005). The constellation of frequent nightly snoring, observed apneas, and/or daytime somnolence is concerning for obstructive sleep apnea and may indicate need for a polysomnogram. Restless sleep (including involuntary jerking movements during sleep) may suggest restless leg syndrome or periodic limb movement disorder. Low serum ferritin levels may lead to abnormal sleep movements, and the condition may improve with supplemental iron.

Social-Emotional Development The toddler to preschool period is marked by significant growth within social-emotional skills. During toddlerhood, children’s ability to use nonverbal communication skills and to participate in social reciprocity improves. Toddlers learn to express their likes and dislikes. Their increasing social skills leads to the emergence of peer relationships, especially during the preschool period. These developments change the social world of the child during this developmental period.

Nonverbal Communication and Social Reciprocity During the toddler period, children increase their use of nonverbal communication strategies, including their range of gestures, to initiate joint attention. Around 18 months of age, children start combining words with gestures when making requests and sharing their interests. Typical progression involves using congruent gestures with words (e.g., pointing to a ball and saying “ball”) then using gestures to augment words (e.g., pointing to a ball and saying “red”). In addition, the types of gestures that children use shift. Conventional gestures (e.g., clapping to indicate excitement) and informational or instrumental gestures (e.g., head shaking, nodding, shoulder shrugging) typically emerge in infancy. The development of descriptive or iconic gestures follows in toddlerhood. Descriptive gestures involve acting out or representing objects or events (e.g., demonstrating a kicking motion when explaining that the ball was kicked, making a gesture to indicate “small” when referring to size). Joint attention refers to the ability to direct another individual’s attention to objects, other individuals, or events. By 18 months of age, children can initiate, sustain, and consistently respond to joint attention. This skill relies on their ability to use gestures and coordinated eye contact to direct the attention of others. Clinicians should encourage parents to model

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SECTION 2  Life Stages

and encourage use of gestures in their children. Indeed, greater use of gestures early on has been associated with later greater expressive language skills (Goldin-Meadow, 2015). The development of social reciprocity within the toddler period is marked by the use of shared enjoyment through an increase in range of facial expressions. During this time, children use complex facial expressions beyond emotional extremes (e.g., happiness, frustration). Complex facial expressions may include guilt, confusion, sneakiness, shyness, and anticipation. Importantly, during this period children direct these expressions at others for the purposes of communicating affective states and are beginning to read emotions in others.

Social Skills and Peer Relationships Social skills during the preschool period include sharing, turn taking, helping, and engaging in reciprocity during interactions. During the preschool period, social skills become increasingly important as children navigate initial peer relationships in the early childhood education setting. During this period, children expand social reciprocity beyond interactions with caregivers to other individuals across settings (e.g., showing and giving toys to another child on the playground instead of just showing toys to a caregiver at home). Conversational skills also become more advanced during the preschool period. Children are able to initiate and sustain conversations by following another’s lead and, importantly, demonstrate interest in others by asking simple questions about the thoughts, feelings, and experiences of others. During the preschool years children begin to demonstrate preferences and desires to interact with certain peers. They are able to name peers. At this point, children also begin to demonstrate understanding of simple social cues, such as indications that they are accepted or rejected by a peer.

Play Skills Play is one of the primary forms of learning for young children and serves as the foundation for development across cognitive, motor, and social-emotional domains. By 18 months of age, children’s play tends to become less egocentric than it was during infancy and more consistently social; children involve others and objects as agents (e.g., feeding a doll). Symbolic play typically arises between 18 and 24 months and involves using novel objects to represent other objects (e.g., pretending that buttons are food on a toy plate). At this stage, parallel play predominates; children play with similar toys alongside each other without interaction. During the preschool period, play advances to interactive and creative play that is collaborative in nature. Preschoolers use schemas that they learn from their environment to rehearse roles (e.g., pretending to cook, use tools). They play “dress-up” while pretending to take on different characters (e.g., pretending to be a movie character, animal, or adult).

Emotional and Moral Development Considerable emotional and moral development takes place during the preschool years, which helps preschoolers establish values, conceptualizations of right and wrong, empathy, and altruism. The emergence of these values becomes feasible

as theory of mind skills develop in preschoolers. Theory of mind refers to the ability to understand that others have differing beliefs, perspectives, and experiences from one’s own. Preschoolers begin to develop a sense of right and wrong based on reinforcement from their environment (e.g., being reprimanded or praised by parents, responses from peers) and progress to understand reasons for rules (e.g., not hitting because it hurts others). Emotional development is underscored by the ability to recognize emotions in the self and others and leads to the development of empathy and altruism. As preschoolers begin to notice emotions in others, they develop responses that are often encouraged by caregivers (e.g., giving a hug or pacifier to a crying infant sibling). Lastly, self-regulatory abilities (described in further detail later) play a large role in emotional development as well.

Cognitive Development Before the second birthday, cognitive development takes place primarily via sensorimotor exploration of the environment. According to Piaget’s (1983) theory of cognitive development (see Chapter 3), during the final stage of the sensorimotor period (18–24 months), toddlers begin to understand causality to achieve new desired outcomes (e.g., using a key to operate a toy). Piaget’s (1983) preoperational period characterizes the remainder of toddlerhood and the preschool period. This stage is marked by reduction in the reliance on sensorimotor exploration and the emergence of symbolic thought. Symbolic thought during this period is evidenced by role playing and using novel objects to play pretend. Children develop schemas based on their experiences of the world and begin to accommodate their schemas with ongoing exposure to novel events. Socialized gender roles may also begin to emerge during this period based on schemas children have formed through observational learning. During this period, children’s imagination and limited logical reasoning skills lead to difficulties discerning between reality and fantasy (e.g., superheroes, monsters). Lastly, during the preschool period, emerging executive functioning skills (discussed in further detail later) underscore cognition and impact other areas of development. Let’s reflect upon the vignette at the beginning of this chapter regarding the various developmental domains we have discussed. You may have noticed that Nicky exhibits a pattern of relative strengths and weakness. He is overall healthy and demonstrates appropriate gross and fine motor skills. With regard to adaptive skills, he is also on track: sleeping through the night, demonstrating independence with feeding, and having achieved daytime continence. However, Nicky currently presents with possible language delays and poor articulation that compromises his intelligibility, even for his parents. Speech and language delays are likely contributing to frustration at not being understood by others and causing him to engage in disruptive behaviors at home and school. A comprehensive speech and language assessment could establish the nature and degree of his communication difficulties. While his difficulties with expressive language and speech are apparent, the assessment should include receptive skills as well as expressive language and speech. The

 

CHAPTER 7 Toddlerhood and the Preschool Years

results of this assessment will direct interventions designed to capitalize on his strengths and to improve his communication skills (see Chapter 107). He may be able to get speechlanguage services in the community or, if he is found eligible, he may be enrolled in a special education preschool program (see Chapter 104).

OVERARCHING CONCEPTS IMPORTANT FOR TODDLER-PRESCHOOL DEVELOPMENT The Developing Brain The neurologic underpinnings of brain development during the toddler and preschool years are increasingly well understood due to advances in neuroscience techniques. Neural connections formed through interaction of genes and environment/experiences proliferate in the first year of life, followed by reduction of connections through synaptic pruning (Shonkoff & Phillips, 2000). It is in the toddler and preschool years that pruning begins for brain regions involved in language and cognitive function. Brain circuitry becomes more refined and efficient; complex circuits are built on earlier simple circuits. Myelination, which has been ongoing since the prenatal period, proceeds rapidly in these circuits, insulating nerve cells and resulting in increased conduction velocity and efficient communication. Patterns of experience define and stabilize patterns of synaptic connections and optimize the toddler’s and preschooler’s ability to adapt to the environment.

Development of Self-Regulation Changes across developmental domains that occur during the toddler and preschool periods may be impacted by global skills that span across domains. Self-regulation represents a multidimensional construct involving the control of emotions, attention, and actions (Vohs & Baumeister, 2004). Components of self-regulation have been divided into two broad categories: (1) Emotion regulation describes behaviors that involve the regulation of emotional expression, and (2) executive functioning skills describe cognitive abilities that typically require conscious effort, such as inhibitory control and working memory, and that facilitate planning and organizing.

Emotion Regulation Domains of emotion regulation relevant for toddlers and preschoolers include reactivity or emotional lability and selfsoothing. Within the toddler years, difficulties with the ability to self-soothe independently, without adult intervention, are common and underscore the tantrums that are typical of the “terrible twos.” Tantrums are extremely common during the toddler period; however, their frequency, duration, and intensity are largely based on skills in emotion regulation. Frequent, persistent, or extreme tantrums may be a significant clinical concern, especially when the tantrums are accompanied by aggression and/or self-harm. High emotional lability, accompanied by negativity, may also be clinically concerning when tantrums and behavior problems lead to significant impairment in daily routines. As children progress into the preschool

65

years, ability to regulate negative emotions increases, and emotional lability decreases. These skills become important for following classroom routines, interacting appropriately with peers, and navigating novel demands.

Executive Functioning Executive functioning skills that emerge during the preschool period include inhibitory control, flexibility, and working memory. Inhibitory control refers to the ability to suppress a typical or well-practiced response to a stimulus. In young children inhibitory control is needed for successfully playing games, such as Simon Says or Red Light Green Light. Cognitive flexibility involves shifting attention as the demands of the environment or ongoing tasks change. These skills are assessed by tasks that require children to sort cards accurately first by one dimension, such as color, and then, suddenly, by another dimension, such as shape. Working memory involves holding information temporarily in mind while performing tasks. For adults, remembering a telephone number while dialing the number engages working memory. For preschoolers, working memory skills are especially important in the school environment. For example, they must remember their question while they are raising their hand, even if another child gets called on before they do.

School Readiness Although traditional conceptualizations of school readiness emphasized the importance of emergent academic skills, more recent models have taken a multidimensional approach highlighting the importance of academic, behavioral, and social-emotional readiness (see Chapter 83). According to Rimm-Kaufman and Pianta’s (2000) ecological and dynamic model of transition, the transition to kindergarten is marked by increased academic, behavioral, and social demands coupled with decreased supervision and need for autonomy. Not surprisingly, self-regulation skills, including executive functioning and emotion regulation, have been implicated as essential for school readiness (Ursache et al., 2012). Executive functioning skills in the classroom allow students to modulate attention, while emotion regulation skills facilitate the control of emotions and frustration related to novel demands. Both executive functioning and emotion regulation have been associated with emergent academic skills (Clark et al., 2010). Recalling the opening vignette, Nicky was not only delayed in the development of language and speech, but also had challenges controlling his behavior at home and at school. These symptoms reflect difficulties with self-regulation. His tantrums are more frequent and last longer than would be expected for his developmental level; he has difficulties calming, has difficulty managing negative emotions, and shows unpredictable aggressive behavior. Nicky also has challenges in the classroom in terms of emotion regulation and executive functioning skills. For instance, remaining seated in the classroom requires inhibitory control and the ability to sustain attention to ongoing tasks, even when those tasks are dif-

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SECTION 2  Life Stages

ficult for him. He must remember classroom expectations to remain seated; he is expected to regulate negative emotions that arise with frustration or challenge. To fully understand and intervene appropriately, further information would be needed from his caregivers on his overall emotional regulation and coping skills. However, it is likely that he will need interventions at home and in his preschool classroom. Implementation of a plan to improve emotion regulation and executive functioning skills is important to prepare him for the even greater demands of a kindergarten classroom when he turns 5 years old.

TABLE 7.2 Commonly Used Develop 

mental Screening Tests for Children in the Toddler-Preschool Age Range

General Developmental Screening Parent Report • Ages and Stages Questionnaires-3 (ASQ3), 1–66 mo • Parents’ Evaluation of Developmental Status (PEDS), birth–8 yr • Parents’ Evaluation of Developmental Status: Developmental Milestones (PEDS:DM), birth–11 yr • Survey of Well-Being of Young Children (SWYC): Developmental Milestones, 2–60 mo Objective Screeners (direct testing/elicitation screens) • Capute Scales (Cognitive Adaptive Test/Clinical Linguistic and Auditory Milestone Scale), 1–36 mo • Brigance Early Childhood Screens-III, 0–35 mo, 3–5 yr • Battelle Developmental Inventory Screening Test-II (BDIST2), 6 mo–8 yr • Kaufman Brief Intelligence Test-2 (K-BIT), 4 yr+



 



 



CLINICAL PERSPECTIVES: CONDITIONS COMMONLY PRESENTING IN THE TODDLER AND PRESCHOOL YEARS The purpose of early detection of developmental and behavioral problems in the toddler and preschool years, as in any other epoch of childhood and adolescence, is prevention and intervention. Primary prevention involves recognizing warning signs of potential issues, thereby intervening before problems arise. Secondary prevention involves identifying mild disorders and providing interventions to alleviate the problems. Tertiary prevention involves prompt treatment and intervention for more significant disorders, thereby mitigating potential comorbidity or functional limitation. Early detection of developmental and behavioral problems relies on evidence-based methods of screening and assessment (see Chapter 79). Developmental and behavioral screening results in a risk categorization (e.g., low, moderate, high risk) whereas assessment generally confers a diagnosis. Table 7.2 lists developmental screening tools for use in the toddler-preschool period. In this section we discuss conditions that are likely to present during this era. We will consider tools for screening and strategies or tools for assessment.

Developmental Delay While motor delays and disorders may present during infancy, delays in cognitive, language, social, and adaptive skills are likely to present later, during the toddler-preschool period. Within well-child care, surveillance regarding a child’s development should occur at all visits. The American Academy of Pediatrics recommends formal developmental screening be administered in the medical-home setting at specific intervals (i.e., 9, 18, and 30 months, at minimum) (Lipkin & Macias, 2020). Screening tools include parent report and direct elicitation measures. Diagnostic testing measures are used after a screening test indicates need for detailed assessment. Generally, diagnostic measures are administered by direct testing, though parent report assessment tools are available. Developmental delay may occur in one or more domains: gross motor, fine motor, language, social-emotional, and cognitive. A formal diagnostic developmental evaluation should include a comprehensive developmental





 



 



 

Language Screening • Communication and Symbolic Behavior Scales: Developmental Profile Infant-Toddler Checklist (CSBS:DPITC), 2–24 mo

Autism Spectrum Disorder Screening Parent Report • Modified Checklist for Autism in Toddlers, Revised With Follow-Up (M- CHAT-R/F), 16–30 mo • The Parent’s Observations of Social Interactions (POSI), 16–36 mo • Social Communication Questionnaire (SCQ), 4 yr+ Objective Screeners • Screening Tool for Autism in Toddlers (STAT), 18–35 mo





 



Promising Tools • Early Screening for Autism and Communication Disorders, 12–36 mo • Rapid Interactive Screening Test for Autism in Toddlers (RITA-T), 12–36 mo



Adapted from Lipkin, P. H., & Macias, M. M. (2020). Promoting optimal development: Identifying infants and young children with developmental disorders through developmental surveillance and screening. Pediatrics, 145(1).

assessment. In addition, familial and psychosocial history and a physical and neurologic examination may identify undetected medical conditions and/or an underlying genetic abnormality. The laboratory workup depends on the findings of this evaluation. It is important to connect families of children with developmental delay to early intervention (see Chapter 103) and/or special education programs (see Chapter 104) in addition to appropriate therapy (see Chapters 106 and 107) aimed at addressing impairment related to the specific delay(s). If a child is impacted by adverse childhood experiences (ACEs), trauma-informed interventions may mitigate negative outcomes since it is known that toxic allostatic stress caused by ACEs disrupts developmental trajectories (Shonkoff et al., 2012) (see Chapter 15).

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CHAPTER 7 Toddlerhood and the Preschool Years

Autism Autism spectrum disorder (see Chapter 41) is a neurodevelopmental condition characterized by qualitative impairments in social communication/interaction and restricted/repetitive behaviors. ASD can first be reliably diagnosed in children in the toddler-preschool era. The prevalence rate of ASD is 1 in 44 in US children, and the condition is present in all racial and socioeconomic groups (Maenner et al., 2021). However, many children are not diagnosed until almost school age, missing valuable opportunity for intervention. Racial and ethnic disparities are found in the prevalence of ASD and access to early evaluation and diagnosis (Maenner et al., 2020). The American Academy of Pediatrics has established policy for autism surveillance and screening, with recommendations for surveillance at all preventive care visits and formal screening at 18 and 24 months of age (Hyman et al., 2020). Screening tools are based on core social communication deficits and to varying degrees on restricted and repetitive behaviors. Level 1 autism screens are almost exclusively parent report measures (e.g., Modified Checklist for Autism in Toddlers [M-CHAT]); at this writing, promising brief observation screens are available or in development. Level 2 screens are intended to detect ASD in referred or high-risk children and require specific training prior to administration (e.g., Screening Tool for Autism in Toddlers [STAT]) (see Table 7.2). A comprehensive assessment of children with a positive screen should consist of a full history, diagnostic interview, an observational evaluation, and developmental assessment. A clinician with expertise in the various presentations of ASD is most appropriate to conduct the comprehensive assessment. Management includes a referral to early intervention (see Chapter 103) and/or special education programs (see Chapter 104) and behavioral interventions (see Chapter 94) that address core impairment of ASD plus treatments for coexisting conditions, if present.

Behavior and Social-Emotional Problems Behavioral and social-emotional concerns are common during the toddler and preschool years. Surveillance and screening for these problems are also recommended at preventive care visits (Weitzman & Wegner, 2015). Caregivers of toddlers and early preschool-aged children often report that the child has difficulty sustaining attention and curbing activity or impulses. However, it is challenging to differentiate normative behavior from clinical conditions at this young age. One consideration is whether the child meets criteria for attention-deficit/hyperactivity disorder (ADHD) (see Chapter 46). Given the high levels of inattention and overactivity in toddlers and preschoolers, it is important to focus on the intensity of behaviors, their impact on daily functioning across settings, and whether they lead to safety concerns. The diagnosis of complex ADHD can be considered in children whose symptoms are severe, functionally impairing, or comprising safety. A formal assessment should include verification of prior diagnoses, evaluation of conditions that may be causing symptoms, and coexisting conditions.

TABLE 7.3 Commonly Used Behavioral  

Screening Tests for Children in the ToddlerPreschool Age Range

General (Broadband) Behavioral Screening • Ages and Stages: Social-Emotional-2 (ASQ:SE-2), 1 mo–6 yr • Brief Infant-Toddler Social and Emotional Assessment (BITSEA), 12–36 mo • Pediatric Symptom Checklist, 4–16 yr • Strengths and Difficulties Questionnaire (SDQ), 3–17 yr • Preschool Pediatric Symptom Checklist (PPSC), 18–60 mo

 





 



 



Condition-Specific (Narrow Band) Behavioral Screening Disruptive Behavior Problems • Eyberg Child Behavior Inventory (ECBI), 2–16 yr Attention-Deficit/Hyperactivity Disorder (ADHD) • Preschool ADHD-IV Rating Scale, 3–5 yr • Vanderbilt ADHD Diagnostic Rating Scales, 4–18 yr





 

 

 

Adapted from Weitzman, C., & Wegner, L. (2015). American Academy of Pediatrics Section on Developmental and Behavioral Pediatrics, Committee on the Psychosocial Aspects of Child and Family Health, and Council on Early Childhood, Society for Developmental and Behavioral Pediatrics promoting optimal development: screening for behavioral and emotional problems. Pediatrics, 135(2), 384–395.

Management of ADHD in toddlers and preschoolers should prioritize behavioral and educational interventions and treatment plans for coexisting conditions (Barbaresi et al., 2020). Medication is rarely a first-line treatment in this age range unless the impairment is severe or access to interventions is severely limited. Many toddlers and preschoolers experience fears and worries. Differentiating typical worries from excessive fears and worries that interfere with daily activities is paramount for early targeted treatment. Similarly, young children in this age range may exhibit persistent sadness consistent with depression. Behavior screens and assessment tools can be global/ broadband or single condition/domain-specific rating scales (Table 7.3). Although research on screening in younger children is limited, measures with good psychometric properties are available, including some in the public domain.

RECOMMENDATIONS AND EVIDENCE-BASED INTERVENTIONS Strategies for Increasing Positive Behavior Parenting toddlers and preschoolers may be difficult for many adults. Tantrums and oppositional behaviors are normative as children exercise autonomy and initiative. When they are aroused, they may also have difficulties with the ability to regulate emotions and self-soothe. This developmental period is often referred to as the “terrible twos.” However, the challenging behaviors are likely to begin around 18 months and persist throughout the preschool years. A critical element of parenting and caregiving for children in this age range is to create a context of warmth and responsiveness. Children misbehave because they do not know the

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rules or cannot reliably follow the rules. It is important for parents and caregivers to maintain a good relationship with children, even if the children’s behavior violates rules or expectations. Clinicians may remind parents not to take their child’s misbehavior personally. For younger toddlers (i.e., 18 months–2 years), anticipatory strategies are paramount. Parents can be encouraged to make simple modifications to the environment or routines to prevent misbehavior (e.g., removing objects from reach that are problematic). When used appropriately, distraction and redirection also work well, especially with toddlers and especially when they are just beginning to engage in the undesirable behavior. It is also important to pair words with gestures and/or signs for younger children so that they understand what is being asked of them. Toddlers may not yet understand the rules or the consequences. Thus it is wise to prevent cycles of escalation. Alternative strategies may be appropriate for preschoolers who are able to understand and follow the rules and who can link their behavior with specific consequences, such as timeouts (described later). Positive reinforcement, based in operant behavioral principles, is effective for increasing appropriate behaviors (see Chapter 4). Across the toddler-preschool age range, a valuable strategy for parents is to praise positive behaviors, those behaviors that the parents want to see. In that way their children receive attention for appropriate behaviors, which makes those behaviors more likely to occur (see Chapter 4). For younger toddlers (i.e., 18 months–2 years) positive attention includes nonverbal strategies such as smiles, clapping, and excited vocalizations. As children’s receptive language skills increase, positive attention may include specific praise statements. Labeled praise (e.g., “Good job staying next to me”) is highly effective at increasing those specific behaviors. For preschoolers who may engage in inappropriate behaviors as a form of attention seeking, parents are encouraged to use planned ignoring for the undesirable behaviors paired with positive attention for the “positive opposites” of those behaviors. Scheduling daily “special time” to play with their child can be helpful; during the designated time parents may practice reinforcing positive behaviors. For children between 2 and 7 years old, as receptive language skills increase, parents have many available strategies to promote positive behaviors: praise positive behaviors with highly specific input (“Good job playing so gently with the toys”), describe what the child is doing (“You are building a tower”), reflect on what the child says (child says “I made a house,” and parent responds, “Yes, you made a red house”), and avoid criticisms and commands. In addition to verbal praise, tangible reinforcers may be helpful to encourage appropriate behaviors for preschoolers. For instance, daily reward charts using small reinforcers (e.g., stickers, tokens, raffle tickets) can be used to promote the completion of important daily routines, such as brushing teeth without objection or putting away toys without reminders. To be effective, parents should make their commands and directions extremely simple and clear. As receptive language skills may still be emerging, even in the late toddlerhood and

the preschool years, clear instructions give the child the best chance of responding appropriately. Here are tips for effective commands: • Avoid commands phrased as questions (e.g., say “Please put the blocks away” instead of “Can you please clean up?”) • Present commands one at a time • Ensure that the child is attending (eye contact) before giving a command • Make commands specific (e.g., “Sit with your bottom on your chair” instead of “Behave” or “Be good”)







Managing Challenging Behavior Preschoolers may not comply, even with well-constructed commands offered in the context of a warm and nurturing environment. For children who can understand consequences, including most preschoolers, parents should provide warnings and then move to appropriate consequences (e.g., timeout, loss of privilege) for noncompliance. Timeout is an effective discipline strategy for children ages 2 to 7 years. It can be used as a consequence for noncompliance or for aggressive behaviors. Clinicians often need to coach parents to use timeout wisely. First, parents should plan where the child will spend the timeout. The timeout should be in a location in the home that is free from distractions and where the parent can still monitor the child. An adultsize chair in a common living space is ideal. Second, parents should plan on the duration of the timeout. Approximately 3 minutes has been shown to be an effective length of time for children between 2 and 7 years old (Zisser & Eyberg, 2010). It is important for clinicians to offer parents suggestions as a backup plan when the child refuses to sit on the timeout chair. For instance, backups may include having a timeout room where the child can be placed when refusing to sit in the chair or directly returning the child to the chair repeatedly without providing reinforcement. Importantly, when backups like a timeout room are used, parents should return the child to the timeout chair to ensure that these backups do not become an escape from the timeout chair. Lastly, it is also recommended to suggest that parents get children to comply with the original command, a command that they initially refused, after completion of the timeout. Many variations and alternatives to timeout may also have a role in behavior management (see Chapter 93). Helping families to establish their approach to misbehavior must consider their values, cultural beliefs, and personal history. Close monitoring of families in which the caregivers struggle with parent behavior management may reduce cycles of escalating parent-child conflict.  

Therapeutic Referrals for Clinically Significant Concerns For children who are experiencing clinically significant behavioral challenges and require further support, a number of evidence-based behavioral therapies are available. Behavioral parent training (also referred to as Parent Training in Behavior Management) is an evidence-based approach for treating behavior problems in children. It empowers parents as agents of change through didactic

 

CHAPTER 7 Toddlerhood and the Preschool Years

methods and coaching sessions, based on behavioral principles (Pelham & Fabiano, 2008). Parent–Child Interaction Therapy (PCIT) is among the most well-established behavioral parent training programs (Zisser & Eyberg, 2010) for children 2 to 7 years old. It involves coaching parents on positive parenting techniques, such as differential attention and timeout, to decrease maladaptive behaviors and increase appropriate behavior. PCIT is traditionally delivered within 12 to 20 individual 1-hour sessions, including live coaching of parent-child interactions by a therapist working behind a one-way mirror and providing guidance via an earpiece (“bug-in-the-ear”). Another well-established parent training program that has an expansive research base is Triple P (Positive Parenting Program) (Sanders, 2012). The Triple P system offers a hierarchy of programs depending on a family’s level of needs. Standard Triple P (Level 4) constitutes the level of intervention that is appropriate for children with clinically significant levels of behavioral challenges. It includes 10 1-hour sessions of didactic information presented to parents on positive parenting skills to decrease disruptive behaviors. Triple P is available via group format (Group Triple P), and adaptations exist for young children with developmental delays (Stepping Stones).

Avoiding and Managing Elopement and Other Threats to Safety Children in this age range may wander away from their caregivers or home. This behavior is called elopement. Elopement often occurs in toddlerhood as children seek to further their autonomy and/or become captivated by their expanding environment. Elopement is quite worrisome to caregivers, especially if the child’s fear development is not established enough to notice when safety is in danger. Other threats to safety include children climbing on furniture or taking risks on the playground. To promote autonomy while also keeping the child safe, prevention is the key. Implementing safety measures (e.g., locks at the top of doors, gates, or use of a safety harness) and electronics that alert adults to the child’s location (e.g., home alarm system, tracking device) reduce the chances of elopement. For children at high risk for elopement, such as those with developmental disorders, the use of multiple safety strategies allows additional time for adult intervention to occur before a child is successful in an attempt to leave. Clear rules for safety and logical or natural consequences for unsafe behavior are also appropriate. Anticipatory guidance regarding these issues should include discussion about possible barriers to prevention and intervention use since differences in caregiver use of appropriate strategies may depend on familial factors such socioeconomic status or cultural norms.

Promoting Social Engagement and Prosocial Behavior Parents often ask clinicians for recommendations to promote their child’s social engagement. Exposure to positive social situations and appropriate modeling within those settings facilitate the development of prosocial behaviors. Thus clinicians may encourage families to provide opportunities for their

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child to play with other children routinely. Child care centers and preschools provide opportunities for social engagement among children, ideally under the watchful eye of skilled caregivers. Playdates among children and/or families are an alternative way of increasing social opportunities. When planning a successful playdate, families should arrange developmentally appropriate activities for children to engage with, provide ample toys and activities to prevent challenges, and go over behavioral expectations in a developmentally appropriate manner (e.g., stating rules). Modeling appropriate play and sharing may also promote successful playdates along with scaffolding as needed and frequent positive reinforcement. Media use is unlikely to promote prosocial behavior (see Chapter 21). Watching television and playing videogames often isolates young children from peers. Interactions via media are not truly interactive and reciprocal. Media has many examples of aggressive and inappropriate behavior, which is easy for young children to imitate. Prosocial behavior is supported by strong language and speech skills. For children with challenges in initiating and sustaining conversations, speech therapy that focuses on pragmatic language skills may be encouraged. Parents are also encouraged to label emotions they are feeling and that they observe their child feeling to aid with emotion recognition and model appropriate emotion regulation. Playing games with children has many positive features. Most games require turn taking. For older preschoolers, competitive games provide opportunities for managing negative emotions associated with losing and can be used to foster emotion regulation skills.

Early Intervention and Transition to School-Based Services For children with significant developmental delays and/or clinically significant behavioral challenges, early intervention services and school-based services may be important components of a comprehensive plan. The Individuals with Disabilities Education Act (IDEA) includes provisions important to toddlers and preschoolers with or at risk for developmental disabilities (see Chapters 103, 104, and 113). Part C of IDEA specifies provisions for federal programming to offer early intervention services for children birth to 3 years old (see Chapter 113). Once eligibility is confirmed, an Individualized Family Service Plan (IFSP) is developed to include services such as home-based early intervention/care coordination, speech therapy, occupational therapy, and physical therapy. As children near their third birthday, typically families are transitioned to Part B services (also discussed in Chapter 113). During the preschool years, these services typically include half-day special education programs and/or mainstream preschool enrollment with additional supports or services pushed into the school setting. As the transition from Part C to Part B services occurs, it is important to suggest to families to initiate outpatient supportive therapies as needed. This ensures that families will continue to receive home- or clinic-based therapies once early intervention ends and services are transferred to school.

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How can the clinician support Nicky’s parents in managing his aggression? A sensitive clinician may suggest positive parenting strategies such as praise for appropriate behaviors. Given his delays in language and speech, the use of active ignoring for negative behaviors, such as tantrums, may be more effective than explanations of why his behavior is inappropriate. Given his age and appropriate developmental skills in thinking and playing, Nicky’s parents may also consider using a timeout system for inappropriate behaviors such as aggression. Labeling his emotions and modeling appropriate coping skills to manage negative emotions may promote his self-regulation.

CONCLUSION Toddlerhood and the preschool years are an exciting period in a child’s life during which they learn many different skills and begin developing their own unique personality. As clinicians, it is crucial to monitor children’s development across multiple developmental domains. Primary care should include surveillance and regular screening. Parents and caregivers are likely to be proud of children’s achievement of milestones and simultaneously face demanding struggles that are common to these eventful years. Clinicians can provide caregivers with the tools they need to help them support their child and maintain equanimity. It is important to provide support regarding concerns that may be indicative of serious conditions. For example, in reflecting upon the vignette earlier in this chapter, Nicky’s presentation raised concerns about his developmental skills. Early language development was within normal limits, but advanced language skills and intelligibility were below what is expected for his age. He could likely benefit from a formal assessment of speech and language skills, and likely speech therapy would be warranted. Nicky was also struggling with emotional regulation and impulsivity. Counseling to his parents about how to manage his behavior was one approach to giving the child support. If the parents were to have difficulties or his inattention, opposition, or aggression became more pronounced, then professional referrals would be warranted. For children in this dynamic age range, the use of standardized developmental and behavioral screening tools and appropriate assessments can guide anticipatory guidance, counseling, referrals, and treatment.

REFERENCES Accardo, P. J., & Capute, A. J. (2005). The Capute Scales: Cognitive Adaptive Test/Clinical Linguistic & Auditory Milestone Scale (CAT/CLAMS). Brookes Pub. American Psychological Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). APA. Aylward. G. (1995). Bayley infant neurodevelopmental screener. Academic Press. Barbaresi, W. J., Campbell, L., Diekroger, E. A., Froehlich, T. E., Liu, Y. H., O’Malley, E., … Chan, E. (2020). Society for Developmental and Behavioral Pediatrics clinical practice guideline for the assessment and treatment of children and adolescents with complex attention-deficit/hyperactivity disorder. Journal of Developmental & Behavioral Pediatrics, 41, S35–S57.

Beery, K., Buktenica, N., Beery, N., & Keith, E. (2010). Developmental test of visual-motor integration (6th ed.). NSC Pearson. Bly. L. (2000). Motor skills acquisition checklist. Psychological Corporation. Clark, C. A., Pritchard, V. E., & Woodward, L. J. (2010). Preschool executive functioning abilities predict early mathematics achievement. Developmental Psychology, 46(5), 1176. Flipsen. P., Jr. (2006). Measuring the intelligibility of conversational speech in children. Clinical Linguistics & Phonetics, 20(4), 303–312. Glascoe, F. P., Marks, K. P., Poon, J. K., & Macias, M. M. (2016). Identifying and addressing developmental-behavioral problems. PEDStest.com. Goldin-Meadow, S. (2015). Gesture as a window onto communicative abilities: Implications for diagnosis and intervention. Perspectives on Language Learning and Education, 22(2), 50–60. Hyman, S., Levy, S., & Myers, S. (2020). Council on Children with Disabilities, Section on Developmental and Behavioral Pediatrics. Identification, evaluation, and management of children with autism spectrum disorder. Pediatrics, 145(1), e20193447. Law, E., Yang, J. H., Coit, M. H., & Chan, E. (2016). Toilet school for children with failure to toilet train: Comparing a group therapy model with individual treatment. Journal of Developmental & Behavioral Pediatrics, 37(3), 223–230. Leaper, C., & Smith, T. E. (2004). A meta-analytic review of gender variations in children’s language use: Talkativeness, affiliative speech, and assertive speech. Developmental Psychology, 40(6), 993. Li, R. (2005). U.S. Department of Education, U.S. Department of Health and Human Services. Workshop summary. Childhood bilingualism: Current status and future directions. Lipkin, P. H., & Macias, M. M. (2020). Promoting optimal development: identifying infants and young children with developmental disorders through developmental surveillance and screening. Pediatrics, 145(1). Maenner, M. J., Shaw, K. A., & Baio, J. (2020). Prevalence of autism spectrum disorder among children aged 8 years—autism and developmental disabilities monitoring network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1. Maenner, M. J., Shaw, K. A., Bakian, A. V., et al. (2021). Prevalence and characteristics of autism spectrum disorder among children aged 8 years—Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2018. MMWR Surveillance Summaries, 70(SS-11), 1–16. http://dx.doi. org/10.15585/mmwr.ss7011a1 Oller, J. W., Oller, S. D., & Oller, S. N. (2012). Milestones: Normal speech and language development across the lifespan. Plural Publishing. Owens. J. A. (2005). Introduction: Culture and sleep in children. Pediatrics, 115(1), S201–S203. Pelham, W. E., & Fabiano, G. A. (2008). Evidence-based psychosocial treatments for attention-deficit/hyperactivity disorder. Journal of Clinical Child & Adolescent Psychology, 37(1), 184–214. Piaget. J. (1983). Piaget’s theory: Handbook of child psychology (chap 1). Wiley. Rimm-Kaufman, S. E., & Pianta, R. C. (2000). An ecological perspective on the transition to kindergarten: A theoretical framework to guide empirical research. Journal of Applied Developmental Psychology, 21(5), 491–511. Robins, D. L., Casagrande, K., Barton, M., Chen, C.-M. A., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the

 

CHAPTER 7 Toddlerhood and the Preschool Years Modified Checklist for Autism in Toddlers, revised with followup (M-CHAT-R/F). Pediatrics, 133(1), 37–45. Sanders. M. R. (2012). Development, evaluation, and multinational dissemination of the triple P-positive parenting program. Annual Review of Clinical Psychology, 8, 345–379. Shonkoff, J. P., Garner, A. S., Committee on Psychosocial Aspects of Child and Family Health, Committee on Early Childhood, Adoption, and Dependent Care, Section on Developmental and Behavioral Pediatrics. (2012). The lifelong effects of early childhood adversity and toxic stress. Pediatrics, 129(1), e232– e246. Shonkoff, J. P., & Phillips, D. A. (Eds.). (2000). From neurons to neighborhoods: The science of early childhood development. In The developing brain (chap. 8, pp. 182–193). National Academy Press. Squires, J., Bricker, D. D., & Twombly, E. (2009). Ages & Stages Questionnaires. Paul H. Brookes.

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Ursache, A., Blair, C., & Raver, C. C. (2012). The promotion of self-regulation as a means of enhancing school readiness and early achievement in children at risk for school failure. Child Development Perspectives, 6(2), 122–128. Vohs, K. D., & Baumeister, R. F. (2004). Understanding selfregulation: An introduction. In Handbook of self-regulation: Research, theory, and applications (pp. 1–9). The Guilford Press. Weitzman, C., & Wegner, L. (2015). American Academy of Pediatrics Section on Developmental and Behavioral Pediatrics, Committee on the Psychosocial Aspects of Child and Family Health, and Council on Early Childhood, Society for Developmental and Behavioral Pediatrics promoting optimal development: screening for behavioral and emotional problems. Pediatrics, 135(2), 384–395. Zisser, A., & Eyberg, S. M. (2010). Parent-child interaction therapy and the treatment of disruptive behavior disorders. In J. R. Weisz & A. E. Kazdin (Eds.), Evidence-based psychotherapies for children and adolescents (pp. 179–193). The Guilford Press.

8 Middle Childhood David Alan Ansel

For additional material related to the content of this chapter, please see Chapters 18, and 104.

VIGNETTE The PS134 school community readied for its field day finale, a mixed-grade tug-of-war. Noah, age 10 and academically at the top of his class, was feeling down. He’d won no ribbons. His best friend Jaxson had teamed with classmate Aaliyah instead of him and they had won every event. Aaliyah now led some kids in a rap song Noah’s mother forbade, so he didn’t know the lyrics. He squeezed next to Aaliyah on the rope and tickled her. “Stop it, there’s no room, our team’s full,” she said. Noah yelled, “No fair,” prompting his mom’s intervention. The 6- and 7-year-old boys watching yelled “Cooties!” As Noah returned to his team, embarrassed, Coach Delgado blew his whistle for quiet. Behind Noah, 8-year-old Kenji dropped the rope, looking scared. “Buck up! You can do it!” Kenji’s father shouted from the sidelines. Coach yelled, “Go!” Teachers chanted, “Teamwork!” while parents cheered “Pull! Pull!” Noah spotted his dad arriving late. “Get up, you baby!” Noah said to Kenji and pulled on the rope as hard as he could. If he could win just one ribbon, his dad might not yell when they get home. The air horn blasted, Noah’s entire team was yanked onto the ground, and in victory Aaliyah hugged Jaxson. Her mom passed out “I’m a Winner” t-shirts to everyone, but Noah’s dad said, “Losers don’t deserve prizes!”

INTRODUCTION Children approximately 6 to 12 years old are colloquially called school age, a cultural remnant of our educational history. Elementary school became available to most economic classes in America well before high school, kindergarten, or preschool did. Freud called the period “latency,” a supposed calm between the storms of early childhood and adolescence. Parenting gets easier for many, but children are not dormant through this time—crucial changes happen while crossing the long bridge from dependence to independence. Erickson cast the main developmental task as resolving industry versus inferiority, but children must also grapple with social, moral, physical, and self-regulatory challenges along the way. Piaget focused on cognition, particularly the disappearance of magical thought and emergence of logical thought, dubbing this “the stage of concrete operations.” The word concrete does not do justice to the thinking of children during this period, however. While there is much they still cannot fully comprehend, 72

children’s powers of reasoning, intuition, problem solving, insight, and creativity are steadily increasing. Indeed, it is during middle childhood that abilities such as multiple perspective taking, inference drawing, and use of metaphor begin to emerge. Freud also referred to this as “the golden age of childhood.” Oft repeated, this is perhaps the most apt moniker of all. Children really come into their own during these years. They begin living lives outside the home (i.e., forming relationships, joining teams, pursuing interests, doing work, and accomplishing things). They develop their own opinions and tastes, a moral compass, and a sense of self. They test limits and exercise self-control. Most are fairly well behaved, hewing closely to rules and routine. They hold adults in high esteem (e.g., “I want to be just like you, Dad”) even if jealous of their powers. When adults look back on their own childhood, or on their parenting years, this is the time most clearly and fondly recalled. In this chapter we refer to the period as middle childhood. Human middle childhood corresponds roughly to what primatologists call the juvenile period. Defined biologically as the time between adrenarche and gonadarche, the animal is no longer completely dependent on parents for survival but is not yet sexually mature. In all social mammals this is a period of rapid learning through play, which becomes increasingly social and competitive (i.e., imitating and preparing for adult life). Human culture tends to prolong juvenility by a few years, marking its termination by social, emotional, and cognitive rather than physiologic puberty. More than anything else, school is what defines middle childhood in modern societies (see Chapter 18). The character of school changes beyond kindergarten. No longer an adjunct to or substitute for the family, it becomes an equally if not more important place where different rules apply and different authority figures matter. For most children school becomes the primary venue for both learning and play. At school children are their own actors; they can try out different roles, personas, behaviors, and peer alliances. School is also a place of little privacy. Children at this age become acutely aware of the ways they and their classmates differ from each other (“I’m fat, she’s short”; “I have curly hair, he talks funny”; “She has more toys/nicer clothes/a bigger house than I do”), as seen in the opening vignette. Children this age are very sensitive to how teachers and classmates may judge them. They learn how to hide their feelings. Noah, in the opening vignette, is better at hiding his feelings than Kenji because

 

CHAPTER 8 Middle Childhood

TABLE 8.1 Influences on Development in  

Middle Childhood Intrinsic

Extrinsic

• Personality/temperament • Genetics and epigenetics • Internalized long-term effects of ACEs • Cognitive strengths, weaknesses • Medical illness/toxins/ metabolism • Physical strengths, weaknesses (injury, physical anomaly or disability) • Nutrition

• School quality (goodness of fit) • School programs (resources) • Cultural (political, historical) • Relational (family, community) • Economic (resource availability) • Ongoing stress (toxic or adaptive) • Climate and ecology • Safety (toxins, violence) • Therapeutic services



















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7 years. Kindergarten was originally conceived to ease the passage from preschooler to student, from early into middle childhood. The topic of school or kindergarten readiness is covered elsewhere (see Chapter 83). Not every child is ready at age 5. Some very precocious youngsters will be at age 4, while some struggle to make the leap even at 6. Clinical judgment about the current life stage of a child is more important than chronologic age alone.















ACEs, Adverse childhood experiences.

he is older. School-age children discern what is “in” or “out” and choose to conform or not. Hierarchies or pecking orders come to define both social and academic success. Some children start to be ostracized by peers and, unfortunately, sometimes even by teachers. Adjustment to this new school environment is the foremost test of middle childhood. How children navigate this transition and come to see themselves in this new milieu sets the stage for everything that follows. School provides a setting and primary stimulus for the many developmental changes and challenges of middle childhood. Children must make alliances and find acceptance beyond the family with both adults and peers. They are expected to handle new levels of freedom and responsibility while developing their capacity for restraint, kindness, empathy, emotional self-regulation, and work. They experience an increasing sense of morality, identity, and role in community, while mastering ever more complex knowledge and skills. These tasks are all closely interwoven, with school being the usual integrating force. Interruption or significant deviation from the cultural norm (e.g., homeschooling) in an individual’s school experience has the potential to negatively impact not only learning but development and later adaptation. However, developmental progress is also strongly influenced by a variety of factors beyond school. These can be categorized simply as intrinsic or extrinsic (Table 8.1), but they really overlap and interact over time. School is thus one very significant part of a much wider system of risk, protective, and promoting factors with which the child interacts in bidirectional, mutually influential ways (see Chapters 2 and 18).

DEVELOPMENTAL PROGRESSION Transition From Early Childhood The expected biologic age of juvenile transition in humans is 5 to 6 years. The shift from the Piagetian preoperational thinking to concrete operations typically happens at 6 to

Physical Changes The biologic markers of the juvenile transition are eruption of the first permanent molars and adrenarche. Adrenal androgens have powerful effects on brain functioning. They promote neurogenesis. They modulate gamma-aminobutyric acid (GABA) and glutamate receptors. They can be converted to estrogen and testosterone, thereby activating sexually differentiated brain pathways for the first time since prenatal development, triggering the many brain and cognitive changes of middle childhood (DelGiudice, 2018). Between 6 and 12 years the brain grows from approximately 75% to nearly 98% of its adult size. More importantly, it becomes more organized and efficient through progressive processes of myelinization of white matter, new axonal projections, synaptogenesis, and synaptic pruning, all of which have profound effects on structure and function. A notable thickening of the corpus callosum proceeds in a front-to-back wave between 5 and 13 years. Relative gray matter thickening occurs in the frontal cortex and language areas, with relative thinning in areas associated with movement and sensory perception. Numerous studies involving functional magnetic resonance imaging (cortical activation) and diffusion tensor imaging (development of white matter tracts) (see Chapter 89) support increasing specialization of different regions of the brain and efficiency of the communication tracks between them. Feedback loops between the forebrain and midbrain transform. Transmission between subcortical regions and between the two hemispheres improves. Cortical activation during specific tasks becomes more localized and specialized. All this change enables the more flexible regulation of thoughts and actions in the presence of competing stimuli, as well as the more selective responses and cognitive control observed during middle childhood (Mah & Ford-Jones, 2012). Broadly, changes in brain size and structure during middle childhood are subtle, but the changes in function, localization, and differentiation are dramatic. Middle childhood is also a time of profound physical growth, with increasing accumulation of both muscle and fat, so a nadir in the body mass index also marks the juvenile transition. Children’s interest in their own bodies changes at this age as well, becoming less about sensory experience and physical needs, and more about form and capabilities. Between 6 and 12 years, boys grow from ~65% to ~88% and girls from ~70% to ~95% of their final adult height. The physiologic/endocrine onset of puberty brings on the fastest linear growth during the final third of middle childhood, often well before the cognitive/emotional transition into adolescence. The dissonance creates a risky time when individual

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children may look older than they think or feel. Similarly, many children in this age group participate in competitive team sports, the risks and physical demands of which may outpace the child’s neuromotor readiness. It is no wonder therefore that rates of sports injuries peak in the last half of middle childhood.

Expected Achievements In middle childhood the main trunks of development branch, branch again, then intertwine. Milestones can be listed and categorized (Table 8.2), but they affect one another in a web of interdependency. Variability in the rate and sequence of milestone attainment is greater than at younger ages, so expected age windows are wide and overlapping. In our vignette Noah is adept academically, his friend Jaxson socially, and Aaliyah verbally. Milestones are often spoken about in this age group using educational rather than medical or psychological vernacular. Social and emotional development becomes maturity.

Language milestones become verbal skills. Cognitive abilities are reflected in attention, learning, academic performance, and executive functions. Most importantly, early childhood delays, when they do not resolve, manifest in the elementary school classroom as problems or disabilities. Clinicians may need to draw connections for parents and teachers between concerns in the two age ranges, prospectively in early childhood (“We better pay attention to this now, or else …”) and retrospectively in middle childhood (“Given the early history of …, the child may now be struggling with …”).

Cognition (Thinking) Around age 6, a metamorphosis occurs in the way children think. Entering the Piagetian stage of concrete operations, magical ideas are replaced by logic, and impulsiveness is replaced by reflection (see Chapter 3). Children become less egocentric and begin to consider other perspectives. They understand cause and effect more clearly and rationally.

TABLE 8.2 Developmental Milestones of Middle Childhood  

6–8 Yr

8–10 Yr

10–12 Yr

Attention/ Executive Functions

• Sustain attention to task • Inhibit unwanted behavior

• Make short- to medium-term plans • Active working memory improves

• Able to plan/execute long-term projects, budget time

Memory/ Sequencing

• Follows three-step directions • Digit span four to five • Can talk about “yesterday” and “tomorrow” • Able to form episodic memories • Able to form paired associations

• Follows four- to five-step directions • Digit span five to six • Meshed associations • Benefits from vicarious memory (through reading or storytelling by adults in family or clan) • Increased use of recall strategies (mnemonics, categorization)

• Follows six- to seven-step directions • Digit span seven • Can plan long-term project • Solve problems with sequential reasoning • Faster retrieval/automaticity

• Crossed laterality understood • Letter/word reversals gone • Understands visual diagrams and instructions

• 3D visualization • Understands complex figures/ diagrams

Tripod pencil grip Emergence of an adult-like gait Zippers, buttons, shoelaces Rides two-wheel bicycle

• Synkinesia/overflow movements gone • Manipulates small objects easily • Able to master basic skills of most sports

• Able to master advanced skills of many sports

• Names >5 objects in 30 sec • Vocabulary >5000 words • Mastered basic syntax of language • Able to carry on reciprocal conversation • Words have single, concrete meanings • Can tell stories with consistent topic and sequence • Adverbs absent • Language used to learn about world (questioning)

• Rapid naming >8 • Vocabulary >20,000 words • Increased use/understanding of embedded clauses • Starting to appreciate dual meanings of single words • Emerging use of adverbs • Starting to use simple simile and idiom • Improving ability to tell jokes, distinguish fantasy from reality

• Rapid naming >11 • Vocabulary >50,000 words • Fully appreciates hidden/dual meanings of words/phrases • Starting to understand ambiguity, irony, metaphor, paradox, symbolism • Mastery of adverbs









































Visual/ Spatial

• R/L discrimination • Transition from local to global visual processing • Ability to understand maps and navigate from place to place





Motor

• • • •









Language















 













































Continued

 

CHAPTER 8 Middle Childhood

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TABLE 8.2 Developmental Milestones of Middle Childhood  

Social Skills and Thinking

6–8 Yr

8–10 Yr

10–12 Yr

• Able to initiate and respond to social overtures • Take turns, share, cooperate • Make/maintain friendships based on friendships based on shared activities, proximity, similarity • Cross-cultural differences in prosocial behavior begin to emerge

• Friendships based on common interests, mutual acceptance, admiration, loyalty, shared values/ attitudes • Increasing ability to manage group dynamics, including teams • Starting to juggle multiple relationships and social hierarchy • Able to put self in someone else’s shoes and show empathy • Able to see self through someone else’s eyes

• Friendships characterized by increasing emotional intimacy, support, self-disclosure • Can manage conflicting allegiances, take multiple perspectives, adopt different persona in different groups • Increasing ability to manipulate truth for own gains

• Still rule based • Goal to avoid punishment, maintain social order • Starting to consider general principles (fairness, justice)

• Become aware that rules can be arbitrary and therefore subject to question—morally right/legally right not necessarily the same • Ability to consider multiple perspectives and conflicting values/interests • Increased emphasis on individual rights

























Moral Thinking

• Rule based (law and order) • Goal to gain approval/rewards; maintain friendly relations • Recognizes good/bad intentions as relevant

















Emotion Regulation

Reading

• Aware their own thoughts and feelings are private and different than others

• Identify feelings • Talk about feelings • Consider alternative attributions

• First romantic/sexual attractions • Able to disguise or feign emotion • Increased mentalizing (i.e., the ability to understand and reason about mental states)

• Knows that print carries meaning • Knows letters are associated with sounds (phonemic awareness) and words are made up of phonemes • Knows sound-symbol (phonemegrapheme) relationships • Learning to read: decoding, word attack skills, sight words

• Reading to learn rather than learning to read • Chapter books, expanding comprehension and memory • Asks questions while reading, rereads if confused • Explains characters’ personality, motivations • Aware of different genres

• Reads critically, draws conclusions • Summarizes and discusses • Provides supporting details • Able to integrate information from multiple sources • Increasing complexity, fluency, speed

• Writes name • Copies words and sentences

• Writing to communicate ideas • Creative writing

• Multiple forms/styles of written communication

• Single → multdigit addition, subtraction; regrouping • Understanding simple fractions

• • • •











Writing





Math

















































Multiplication, division, Fractions, percents Word problems Understanding of negative numbers



• Roots, powers • Operations with negative numbers • Basic geometry • Prealgebra







Note: The rows above each represent distinct domains of development, but almost everything in middle childhood development depends on many other things. Problems in one domain will reverberate in several others.

Rather than relying on intuition or immediate sensory perception, they reason. Children become able to generalize observations, deriving rules that pertain to other situations. They apply principles such as conservation (constancy of measures) and reversibility to transformations. They understand order, distance, time, and rudimentary probability and are increasingly able to factor multiple variables into their thinking. Children in middle childhood love rules, whether externally imposed or self-generated, whether about behavior or

the physical world. They enjoy discovering, knowing, explaining, imposing, testing, challenging, and breaking rules. The nuance, complexity, and sophistication of their application grows gradually between age 6 and 12. Rules provide security and a sense of control. If they see something confusing, they seek to understand through rules. If they break a rule, they may be testing adult limits or applying different rules to the situation. Often the latter relates to rules about fairness or rules about who should make the rules. By the second half of middle childhood, children become better able to balance

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SECTION 2  Life Stages

multiple competing rules, but rules remain the organizing system of their thoughts. Learning typically becomes highly pleasurable and quite motivating in middle childhood, thus children accumulate an ever-expanding fund of knowledge. They grow to appreciate spatial or temporal relations and follow sequential operations. They integrate data from multiple sources and apply previous knowledge and experience to current situations. As a result they can interpret, draw inferences, and reach conclusions. Because of their increasing awareness of the outside world, school-age children are particularly interested in knowing about and understanding differences (e.g., between bodies, families, religions, and countries). “How” and “why” questions often predominate. Among the different types of memory (Table 8.3), familiarity and short-term memory are relatively well formed during early childhood. Active working memory, associative memory, and episodic memory all show marked gains during middle childhood. Kids at this age display faster retrieval and automaticity, they move from paired associations to meshed associations, and they start to use support strategies like mnemonics and categorization. Semantic organization strategies emerge for search and retrieval, as does metacognition (thinking about thinking), which allows children to start, for example, judging the accuracy of their recall. The result is a greatly improved ability to monitor and manipulate information. Episodic memory supports independence in daily activities as well as the development of a sense of self (forming the basis of a “life story”). Deficits in episodic memory have been found in school-age children who have hypoxic or traumatic brain injury, depression, posttraumatic stress disorder, and fragile X syndrome (Ghetti & Bunge, 2012). They have also been implicated as an early (prepsychotic) sign of schizophrenia (Erlenmeyer-Kimling et al., 2000). The stage of concrete operations also brings with it steadily expanding executive and attentional capacities. At this age, children learn to deliberately direct, sustain, and shift their focus. They may choose to follow adult direction or conform with their peers, or they might decide to pursue their own interests or make their own judgments about salience instead. Either way they should show improving task persistence with a growing ability to preview, predict, plan, set goals, and stave TABLE 8.3 Types of Memory  

• Familiarity = recognition that “I’ve been here/seen this before”

• Short-term memory = immediate recall of recent events

• Active working memory = the ability to hold multiple representations in mind simultaneously while associating, processing, or acting on them

• Associative memory = remembering that this goes with or is caused by that

• Episodic memory = the ability to encode, store, and retrieve specific events along with the context in which they happened

off fatigue. Impulsivity and the need for short-term reward to motivate action should shrink as well. Finally, children in this age group become able to divide their attention. They can build a model and listen to a story simultaneously. This ability (combined with their growing language skills) means that when adults are talking within earshot, children are listening and making some (possibly incomplete or distorted) sense of what they hear (especially if they think the conversation relates to them). School-age children frequently undergo IQ (cognitive) testing. Both IQ and overall cortical thickness are relatively stable and highly heritable traits, but regional neuroanatomic markers of intelligence vary with age, correlating roughly with the maturational changes going on at those times (Schmitt et al., 2019; Shaw et al., 2006). Intelligence, however, is a fuzzy and controversial construct. What these tests actually measure are expressive/receptive verbal, visual-spatial, graphomotor, memory, sequencing, executive, and problem-solving skills along with processing speed (see Chapter 85). Other aspects of intelligence (emotional, social, musical, artistic) are ignored. Because intelligence develops in the context of experience and culture, cognitive tests always contain an element of inherent bias. Factors that affect how children perform on intelligence tests also change with time. IQ scores at age 5 to 6 are primarily determined by the richness of the home and preschool environment the child has experienced, while by age 11 to 12 genetic inheritance plays a much larger role (Bouchard, 2009). Measured intelligence correlates only loosely with academic and social success. Despite all these limitations IQ test results affect diagnoses, educational placement, and eligibility for services—never more so than during middle childhood.

Social The nature of both friendship and play changes dramatically as a child enters middle childhood, based on emotional needs and advances in social and moral thinking (see Table 8.2). At younger ages, friendships are determined by proximity and often are adult mediated. Starting around age 6, however, children display a new ability to initiate social interaction, choosing and making their own friends based on mutual interest or attraction. This development is supported by growing capacities to perceive the feelings and motivations of others and provide support, encouragement, or sympathy. Children are now able to modify their behavior in response to the feelings or opinions of others and to balance the ideas of competition versus cooperation. School-age children negotiate with each other about where, when, and what they should play and are able to agree on the rules. Play is crucial to a child’s emotional development. Children rehearse and replay experiences that are confusing, anxiety provoking, or threatening. As children move from preoperational to concrete operational thinking, their play becomes more social and reality based. Middle childhood play emphasizes role playing, problem solving, skill development, and competition. For the first time there are winners and losers, and winning is important. Sports participation begins and becomes a preferred activity for many. Other games are

 

CHAPTER 8 Middle Childhood

usually learned from peers rather than from parents, reflect the prevailing culture, and carry a strict set of rules that teach cultural norms. It becomes possible to cheat, and playing fair matters. Computer or video games are not fundamentally different than older forms of play in any of these characteristics, although concerningly they may be more violent in their imagery (see Chapter 21). Children at this age want to grow up. They want to be like adults and have adult powers. They look forward excitedly to landmarks, such as losing their first tooth or going to middle school. Pretend play imitates the adult world and is often repeated, with minor variations, to gain mastery. Children may play at transgressing limits, practicing their ability to tolerate fear or arousal. Children who are exposed to age-inappropriate material in media or elsewhere may try to integrate it into their play. Early middle childhood (age 6–8) often represents the peak of segregation between the sexes (as the younger kids in our vignette enforce by calling “cooties”). At this age, play may also reflect narrowly defined gender norms—with boys chasing, scaring, fighting, hurting, or ruling and girls cooking, decorating, entertaining, or caretaking—although the degree of such differentiation is influenced by prevailing school and community culture. Later in middle childhood (age 9–11) marks the awakening of the first sexual and romantic attractions. These too are initially explored, tested, practiced, and processed in play (as Noah’s attraction to Aaliyah in our vignette illustrates). The desire to grow up and the need to rehearse confusing or emotional experiences are also reflected in the literature children read. Juvenile fiction features strong heroes, villains, and orphans. Heroes are always good; villains are very bad. Stories often involve new rules, secret knowledge, and superpowers. The protagonist is frequently a child with magical powers or a relationship to someone with magical powers. Stories may involve children solving mysteries, being kidnapped, helpless, or lost. Parents are mostly absent. Bad feelings are usually displaced onto others, and most of the time there are happy endings. Book series that feature familiar characters in new situations are particularly appealing. Reading can help school-age children work through many of the challenges of this age and may serve as a substitute for play in those who are, for one reason or another, socially isolated.

Language Typically, developing 6-year-olds use words as their primary means to reconstruct the past and represent the future. They have begun using language to express ideas, assist in problem solving, and support memory and imagination. They have a receptive vocabulary of 5000 to 10,000 words, and word finding has become easier. They have mastered the basic syntax of their language and should be 95% to 100% intelligible when they speak, even to strangers. Any developmental speech dysfluency (stuttering) they had as a preschooler should be gone. They can tell a story and fluently describe their own actions, thoughts, and feelings. Throughout middle childhood, kids display increasing length and grammatical complexity in their utterances. Adverbs, embedded clauses, and figurative

77

language gradually appear. By age 12 a child’s vocabulary surpasses 50,000 words. As they ready themselves for adolescence, late school-age children employ irony, paradox, and double or hidden meanings and become effective at using language to influence others (Merritt, 2012; Nippold, 2016). During middle childhood, children become adept in the social uses of language (pragmatics). Their ability to listen and take other people’s perspectives into account grows. They start talking in groups of more than two people. They learn to adjust what and how they speak for the audience, taking context into account. Humor progresses from memorized jokes to demystification to word play over the course of the age range. They become better at maintaining and smoother at shifting topic appropriately during conversation. The social conventions of speech for their culture become fully internalized.

Emotional Development Human beings at all ages experience the same range of emotions: happiness to joy, fear to terror, annoyance to anger, sadness to despair. These emotions are experienced on three levels: neurobiologic (brain and autonomic nervous system, leading to somatic symptoms), behavioral (affect, facial expression, crying, hitting, withdrawing), and cognitive (thinking, speaking). The frequency, intensity, and behavioral expressions of emotion vary based on personality, temperament, life circumstances, and preferred coping skills (Table 8.4). Coping skills are cognitive strategies used for emotional regulation. They can be either adaptive or maladaptive, depending on the situation, and when counterproductive are often called defenses. TABLE 8.4 Emotional Coping  

Strategies Strategy

Description

Expression, sharing

“I feel…,” “I did…”

Denial/repression

Conscious/unconscious

Avoidance, repression

Don’t think about it, bottle it up

Discussion, attribution

Comparing one’s own experience to that of others

Rationalization/ intellectualization

Explaining something away, “they were just lucky”

Modesty, humor, face-saving

Turning it into a joke, concealing true feelings/intentions

Displacement, sublimation*

Turning feelings toward a less threatening object

Dissociation, fantasy

Becoming disconnected from real experience

Projection

“They hate me,” when really you hate them

Regression

Retreating to younger or more primitive behaviors

Reaction formation*

Expressing opposite emotion (e.g., tenderness for jealousy)

Aim reduction/ compensation

Shooting lower or higher than what one really wants

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SECTION 2  Life Stages

TABLE 8.4 Emotional Coping  

Strategies— Cont'd Strategy

Description

Altruism, undoing

Satisfying needs, making up for wrongs through helping others

Relaxation techniques

Deep breathing, progressive muscle exercises, guided imagery

Internalization

Negative self-talk (may lead to depression, anxiety)

Passive aggression

Indirectly expressing anger or other negative feelings

Externalization, acting out

Anger, blaming others, aggression (often leads to discipline)

*Reaction formation and sublimation are often considered hallmark coping strategies during latency, but school-age children are capable of displaying/utilizing any and all of the above.

The cognitive and language advances of middle childhood enable children to think rationally about their own feelings and coping strategies. Responses to strong emotions become less reflexive and more reflective, planned, and controlled. Children also become able to consciously separate their internal experience from affect and behavior, so they can hide or talk about emotions if they choose. New coping skills can be considered and tried; existing ones can be rejected, modified, or consciously extinguished. The school-age child can be taught to utilize strategies such as deep breathing, progressive muscle relaxation, guided imagery, and even meditation. In middle childhood counseling and psychotherapeutic methods relying on language start to be effective, but children at this age can also disguise their true intentions or attempt to “split” parents (i.e., play one against the other).

Academic Learning School-age children are oriented toward learning. Their cognitive, language, and social development have brought them to a point of readiness, and thus academically oriented schooling begins at this age in virtually all cultures. Academic expectations (curricula) vary both geographically and over time. A typical sequence of academic milestones is outlined in Table 8.2. Most students can learn what they are taught when they are taught, regardless of the specific timing or teaching methods used. For some, their learning style (determined by an unusual set of neurodevelopmental strengths and weaknesses) demands particular instructional approaches, and a mismatch of learning to teaching style will express as learning difficulty or disability. Children at this age first learn to read, then read to learn, and finally (hopefully) love to read. The best predictors of reading performance in elementary school, at least for European languages, are being read to frequently as a preschooler, listening comprehension, and phonemic awareness (the understanding that words can be broken down into sequences of sounds, and these phonemes are represented by graphemes consisting of letters or groups of letters).

Writing progresses from copying to communicating to expressing complex ideas, and from single letters to words to sentences to paragraphs and stories or essays. A distinction should be made between the mechanics (handwriting, grammar, spelling, punctuation) and the content (ideas, vocabulary, sequencing) of writing. Difficulties with mechanics are more common, less concerning, and are amenable to bypass strategies (cursive, keyboarding, dictation, voice recognition, automated spelling and grammar checkers). Writing mechanics and content should be judged (and perhaps graded) separately, and mechanical obstacles should never be allowed to hold a child back from progress in learning and practicing writing as a means of expression. During the early elementary grades, children become proficient using the four basic math operations, first with single digits, then with multiple digits requiring regrouping. They learn zero, negative numbers, and basic fractions (though many have an intuitive sense of these already). Later they learn word problems and how to work with negatives, fractions, decimals, and percents. In late elementary they are introduced to roots, powers, basic geometry, and prealgebraic principles. Math pedagogy in elementary school often leans heavily on memorization of math facts and the expectation that children should be able to explain their work. Assessment of the former emphasizes speed, the later language, both of which can be relative weaknesses for some children who otherwise have a natural aptitude for math. The abilities of such a child may go unrecognized, unappreciated, and unrewarded.

Home, Self-Care, and Community Living Middle childhood represents a coming-out period for most children, the time when they first leave the family and interact, at least semiautonomously, with the outside world. They start building a life of their own. Social, cognitive, academic, and adaptive milestones together enable this transition. School-age children learn to navigate their world safely and independently, be it the streets of their neighborhood, the public transit system of their city, or the halls of their school. Older children in this stage can be taught to travel long distances by themselves via rail or air. A bicycle becomes not just a toy but a means of transportation. They learn to make phone calls, shop at a store, and surf the web. They know how and when to summon help, and they recognize and respond to danger. They should be able to wash, bathe, dress, make a bed, clean up, and cook a meal. Thus at home, they can mostly take care of themselves. They can also learn to use tools or machinery, tie knots, pitch a tent, tack a horse, plant and harvest a crop, and safely handle knives and fire. Thus they can handle steadily increasing responsibilities to either help with domestic tasks or contribute to the family economy (foraging, farming, family business, household chores). During the latter half of the age range (9–12 years) they can take on increasing responsibility for the care of younger siblings as well. However, just because they can perform these tasks does not mean they should. Parents must strike a balance between nurturing, protecting, and supporting their school-age child on the one hand and fostering a growing

 

CHAPTER 8 Middle Childhood

sense of independence and responsibility on the other. When children are overscheduled or given too much work, not enough space may be left for the play and social interaction necessary to meet the challenges of this age.

Tasks and Challenges In the journey from early childhood to adolescence, children form a conscience (moral compass) and develop a self-image (identity). Hopefully they also find both internal (self-esteem) and external (peer group) acceptance. How a child meets and experiences these challenges often sets the stage for later life. Signs of difficulty adjusting or unmet emotional needs at this age may show up as internalizing (depression, anxiety) or externalizing behaviors (tantrums, aggression, lying, stealing, oppositionality, defiance), somatic symptoms (headaches, abdominal pain, sleep disturbance), or academic struggles (focus, learning, completing schoolwork).

Adaptation to School Adjustment to school is never a trivial or minor event. Most children share common insecurities (e.g., “Maybe I’m stupid,” “Nobody will like me,” “What if I fail?”). Success requires them to pay attention, persevere, master fears, delay gratification, and forge new alliances in ways that represent a profound reordering of their previous life rhythms and priorities. They must develop the capacity for tolerating frustration and a willingness to try again after failure, which come from earlier experiences in the emotional safety and love from their parents. They must internalize and generalize a new set of rules, with their associated sanctions, personified by a new cast of authority figures. Teachers and administrators soon become the highest power, elevated above parents, but school-aged children are influenced by many adults, including other school staff, coaches, clergy, parents of peers, and even (vicariously) media figures. As they start to compare, children’s own images of their parents evolve toward a more nuanced and realistic view. Parents are not always good or right, are no longer seen as omnipotent, but are rather just one of many powerful forces they must reckon with, as each of the children in our vignette does in different ways.

Conscience Formation Naturally interested in differences and confronted with differing rules in various settings from assorted adults, school-age children start to examine contrasting values, traditions, roles, and expectations. Reconciling these allows them to internalize the values of both family and culture and propels their moral thinking forward. They come to experience feelings of modesty, embarrassment, and disgust. More importantly, they leave behind the purely transactional model of early childhood to develop their own independent sense of right and wrong. Initially rule and conformity (i.e., law and order) driven, ethical principles (e.g., justice) and intent gain influence by the latter half of middle childhood.

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Achieving Mastery Children take great pride in accomplishments during middle childhood. They may also feel shame and embarrassment when they do not live up to expectations, as reflected in Noah’s reactions in the vignette. New knowledge and skills can be acquired in many areas aside from school and academics, including sports, clubs, hobbies, and home life. It is important for all children to have areas in which they feel competent, confident, and experience success. School-age children can see through false praise, but they need adult recognition to nurture their strengths and interests; a sense of competency in one realm may provide the resiliency needed to persevere on difficult tasks or areas of relative weakness. Social Acceptance Elementary school children pick their own friends. Parents usually are not (and should not be) involved. The mutuality of this process is daunting and delicate (e.g., “Should I approach them, or wait for them to invite me in?”). Although many catch on easily, structured activities (team sports, field days, interest-based clubs) help some children initiate contact with others and learn the “dance.” Close friendships provide opportunities for mutual exploration, play, and growth. The number and intensity of close friendships made at this age may set a lifelong pattern. Having at least one or two close friends is very important for all children, however, as it provides protection from rejections and resiliency during psychosocial stress. In the long run children without any close friends are at higher risk of depression, suicide, substance abuse, school failure, and externalizing behaviors. Friends explore the world and grow together, but they also form groups and exclude others. Bullying emerges at the beginning of middle childhood, and peaks in intensity near the transition to adolescence. Thus the need to balance social integration with social competition to determine one’s place in the social hierarchy also appears at this age. Integration calls for prosocial behaviors such as doing favors for others, demonstrating skills, and displaying loyalty; competition demands more aggressive behaviors to earn status, reputation, friends, and allies (e.g., “Should I be an individual or conform?” “Should I lead or follow?” “Should I fight or retreat?” “Should I tell the truth or back this person up?” “Should I support or compete?” “Whose side am I on?”). In the moment, case-by-case decisions must be made many times every school day. How a child strikes these balances depends on many variables (Fig. 8.1). Social demands like these contribute to an early peak in the emergence of both externalizing and internalizing psychopathology at this age. A child’s degree of success in this realm can also have lifelong implications for social, economic, and reproductive success. Self-Regulation Moving from dependency to autonomy requires a child to exercise new types of self-control. Parents have expectations (e.g., “Buck up,” “Use your words,” “Don’t cry,” “Fight back”)

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SECTION 2  Life Stages Functional Domains

Individual Variables

Dynamic Outcomes

Motivation

Social Thinking

Attunement

Friendships

Verbal/nonverbal

Communication

Expressive/receptive

Individual Relationships

Prosocial

(number, quality)

Bullying target (physical, emotional, social) (in-person, online)

(helping, sharing, supporting)

Behavior

Internalizing (anxiety, withdrawal) Externalizing (aggression, bullying*)

Visibility (seen/unseen)

Group Dynamics

Position in hierarchy Membership/isolation

Interests/activities

Personal

Acceptance/Rejection* Acceptance

Talents/skills Cultural affinities

* increased risk of high school dropout, conduct disorder, violent or abusive behaviors, depression, suicide

Fig. 8.1 Social adaptation. Social success is dependent on many individual variables mediated through individual relationships and group dynamics. Having no friends, or only superficial friendships, or being socially “unseen” is relatively benign. However, being a bully, being chronically victimized by bullies, or rejected by the entire peer group is associated with poor behavioral, psychosocial, and educational outcomes.  

Internal Cues (plan, intent, interests)

External Cues (context, feedback, expectations)

FLEXIBLY ... Inhibit a,b Activateb Monitor a Sustaina Shifta Adapt b

Attentiona Thoughtsb Feelingsb Behaviors a,b Strategies b

a

GOALS

difficulties = attention-deficit/hyperactivity disorder (ADHD) = internalizing/externalizing behavioral disorders

b difficulties

Fig. 8.2 Self-regulation, also known as executive function skills, emotional regulation, or effortful control. Self-regulation is a lot like a thermostat, but one that controls many variables at once. Children must learn to constantly monitor and evaluate their own environment and internal state, comparing to desired “settings.” They must then up- or down-regulate (left rectangle) various systems (right rectangle) to bring about change in the desired direction.  

and so does school (e.g., “Cooperate,” “Sit still,” “Ask for help,” “Raise your hand”). To meet them, children must regulate their own appetites, drives, emotions, and behaviors. They must modulate their levels of excitement, arousal, activity, effort, and focus to match context and demands. They must learn to inhibit impulses and tolerate waiting, worry, frustration, and compromise. Self-regulation calls on a complex set of related abilities and functions (Fig. 8.2), which go by many names (executive skills, emotional regulation, effortful control). The skills involved start out intentionally and typically become internalized and automatic with practice, like riding a bicycle. Self-regulation skills can be taught by parents and teachers through modeling, cueing, and gradual withdrawal of adult support as the child demonstrates increasing competence (Florez, 2011).

Self-regulation is fundamental to successful adaptation at all stages of life. Better regulation measured in childhood predicted adult income, wealth, security, occupational prestige, lack of substance abuse, and lack of criminal convictions. This finding was true even when intelligence and socioeconomic status were controlled for, and even between sibling pairs (Moffitt et al., 2011). How well an individual child develops self-regulatory capacities during middle childhood is impacted by many factors, including heritable personality traits, resiliency factors (or lack thereof), early experiences (either positive or negative in nature), and the timing and structure of environmental influences (parental support, modeling, and teaching). There are ways to quickly assess self-regulation skills in a clinical setting that do not depend solely on parent and teacher report, such as the

 

CHAPTER 8 Middle Childhood

head-toes-knees-shoulders (HTKS) task (Ponitz, McClellan, Matthews, & Morrison, 2009; Wanless et al., 2011).

Self-Image Its true roots are even earlier, but middle childhood (not adolescence) is when identity starts to be actively explored, expressed, questioned, and revised. For instance, while gender-type preferences (cis or trans) seen in the play of preschool children remain stable over time (Gülgöz et al., 2019) (see Chapter 76), it is during middle childhood that children start consciously comparing themselves to others and making deliberate choices about how to express their identity. Most adults would recognize their 12-year-old but not their 5-year-old selves. Throughout middle childhood, children undergo a cyclic process of self-questioning and reconstitution (e.g., “Where do I come from?” “Am I valued and by whom?” “Who do I like?” “What do I enjoy?” “What am I good at?” “Will trying harder pay off?” “How do I compare to others?” “What if I fail?” “What do I want to be when I grow up?”). This inquiry leads to an increasingly clear and differentiated set of beliefs about themselves, or self-concept, and a related but more malleable set of feelings, or self-esteem. Noah’s self-image is threatened in our vignette as he compares himself to Jaxson, and his family to other families. At this age children show pride (or shame) in family, culture, and community. They get to know themselves and become comfortable (or not) with their body and their personality. They locate themselves in the social pecking order and develop opinions (accurate or not) about their own strengths and weaknesses. Feedback received from both peers and adults strongly influences these developments. The way adults offer praise, criticism, and advice determines whether a child adopts a fixed or a growth mindset (see Chapter 101).

Cultural Influences What is considered normal child behavior, and what constitutes typical teaching and parenting, is strongly mediated by culture (see Chapter 20). Parental expectations, moral attitudes, and the way families interact with the larger community vary among ethnic groups. Even within relatively monolithic cultures (European, Asian, Latino) there can be great differences in parental expectations across nationalities and other subgroups (Super et al., 2008). It is also at this age that children themselves first become aware of cultural stereotypes, and this awareness occurs earlier among members of stereotyped minorities. Parents are the first creators and mediators of culture for their children during early childhood. In middle childhood, however, teachers and peers play a larger role. Through media (see Chapter 21) culture exerts direct influence as well. As a result, first-generation immigrant children often begin to deviate from their parents’ culture during middle childhood—a phenomenon that can cause conflict and consternation. Many studies show that children develop skills more quickly in areas that carry particular importance within their own culture. When assessing children for developmental and/

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or behavioral difficulties it is important not to make cultural assumptions. Questions should be designed to ascertain what constitutes children’s developmental niche within their own culture, such as: • Where, with whom, and doing what does the child spend each day? • What customs, traditions, and assumptions guide parental behaviors? • What are the parents’ expectations for their child (relevant to the problem being discussed)? • How do the parents view their role versus the role of teachers, peers, professionals, others? It is important to put this information alongside what you know about a child’s personality and temperament and think about the goodness of fit between the child and the cultural expectations.







Readiness for Adolescence We define the end of middle childhood and transition to adolescence (see Chapter 9) by cognitive, emotional, and social changes rather than biologic markers. The hormonal onset of puberty usually occurs during the last third of middle childhood. Adolescent readiness has not been studied in the same way school or kindergarten readiness has, but one could conceive of it as when a child has met most milestones of middle childhood and overcome most of the challenges facing a school-age child. Key signs may include the following: • Reads critically, draws conclusions, is able to integrate information from multiple sources • Shows emerging understanding of irony, paradox, ambiguity, metaphor, and sarcasm • Is able to complete multistep, long-term assignments independently, with minimal support • Friendships begin to show more self-disclosure and mutual emotional support • Manages conflicting allegiances, adopts different persona in different groups • Considers multiple perspectives and conflicting values/ interests • Knows morally right and legally right are not necessarily the same • Considers individual rights in addition to rules • Shows increasing curiosity about world beyond immediate surroundings/experience • Can handle significant responsibility without supervision • First explicit, conscious romantic or sexual attractions are starting to emerge There is considerable individual age variability when the adolescent transition happens. It might be as early as 10 to 11 or as late as 14, but 12 to 13 is the most common age. Recognizing when a juvenile has turned into an adolescent is a shared responsibility of clinicians, teachers, and parents. Whether a particular 12-year-old is still in middle childhood or has entered adolescence has implications for the conduct of the medical visit and the advising of parents.





















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SECTION 2  Life Stages 45

Percentage of children

40 35

33%

33%

30 25 18%

16%

20 15 10 5 0 Zero

One

Two

Three or more

Fig. 8.3 Numbers of comorbid conditions in ADHD. (From Larson, K., Russ, S. A., Kahn, R. S., & Halfon, N. [2011]. Patterns of comorbidity, functioning, and service use for US children with ADHD, 2007. Pediatrics, 127[3], 462–470.)  

WHEN THINGS GO AWRY—PATTERNS OF DYSFUNCTION The most common developmental-behavioral diagnoses made during middle childhood are attention-deficit/hyperactivity disorder (ADHD), learning disabilities, oppositional-defiant disorder, and anxiety disorders. The criteria for each are based on symptoms seen at a surface level: learning delay, academic underachievement, distractibility, hyperactivity, tantrums, worry, avoidance, or other problematic behaviors. Symptoms are driven by underlying forces, however, which can be difficult to elucidate and untangle. Emotions, psychosocial stressors, and neurodevelopmental strengths or weaknesses can all contribute. Multifactorial causation is not unusual (see Chapter 2), and similar underlying struggles can express differently at a behavioral level in different children. Comorbidity becomes the rule, not the exception, during middle childhood. Conditions are also not always what they seem to be. Learning differences or emotional problems can create the appearance of ADHD. Oppositional or externalizing behavior may be driven by mood. Social anxiety and obsessive compulsiveness sometimes look a lot like autism. Thus when children qualify for several diagnoses at once, thinking about cause versus effect can help avoid therapeutic misadventures. Conversely, some

children fail to meet criteria for any diagnosis despite significant impairment because they straddle boundaries between disorders. Keep an open mind and keep asking questions (e.g., “What else might be going on?” “What if we are wrong?” “How could we approach this differently?”) especially when a child is not responding to interventions.

Attention Deficits Inattention and/or impulsivity are the lens through which many parents and teachers prefer to view middle childhood school and behavior difficulties. ADHD (see Chapter 46) is less stigmatized and more socially accepted than alternative explanations. Treatment is less costly and more accessible. Assessment is simpler as well, with American Academy of Pediatrics (AAP) guidelines (Wolraich et al., 2019) available for diagnosis and management by primary care providers inside the medical home. Two-thirds of children with ADHD suffer from at least one, and one-third have two or more, other disorders, however. (Larson, Russ, Kahn, & Halfon, 2011) (Fig. 8.3).

Learning Differences When school-age children struggle academically it is important to provide them with help promptly, before they fall too far behind. The AAP has published guidance for the

TABLE 8.5 American Academy of Pediatrics Guidance on School-Aged Children Who Are Not  

Progressing Academically

• Care coordination should take place in the medical home. • Pediatricians need to understand special education law and procedures, including right to free appropriate public education, least restrictive environment, how to read an individualized education plan (IEP), and related laws (§504 of the Rehabilitation Act of 1973). • Pediatricians should take an active role in prevention, identification, diagnosis, and treatment of academic progress problems. • Pediatricians may take an active role in the initiation, development, and implementation of IEPs and 504 plans. • Many factors need to be considered when choosing an approach to evaluation. • Pediatricians should develop relationships with colleagues in other fields serving these children. • Pediatricians should understand the different goals of evaluation in different settings. • Payers should consider covering such care.















Adapted from Rey-Casserly, C., McGuinn, L., & Lavin, A. (2019). School-aged children who are not progressing academically: Considerations for pediatricians. Pediatrics, 144(4), e20192520.

 

CHAPTER 8 Middle Childhood

involvement of primary care physicians in the evaluation and management of these children (Table 8.5) (Rey-Casserly, McGuinn, & Lavin, 2019). Special education law (see Chapters 104 and 113) stipulates every child in the United States between 3 and 22 years old is entitled to a free and appropriate public education in the least restrictive environment capable of meeting each child’s needs. Children found eligible under at least 1 of the 13 special needs categories receive an individualized education plan (IEP), which may provide for specialized classroom placement and/or a variety of services, modifications, and accommodations within the mainstream. Specific learning disability (SLD) (see Chapter 47) is the most common reason children qualify for special education services, accounting for 35% to 40% of all IEPs (and an even higher percentage during middle childhood). The next four most frequent eligibility categories are speech-language impairment (see Chapter 44), which often turns into SLD as children move from preschool to school age, other health impairment (not limited to but often used for ADHD), intellectual disability (see Chapter 40), and autism (see Chapter 41).

Peer Problems and Bullying Peers are any group of similar-age children interacting with each other in one place at one time (typically a school, neighborhood, or village). Friendships are individual relationships formed between peers. Establishing a secure place among peers is crucial to all school-age children (see Chapter 17). Having and keeping at least one close friendship can be a highly protective factor against the adverse emotional consequences of other social difficulties, which are common. Several factors predispose to social struggles (Table 8.6), but any child can experience them, and no one risk factor makes them inevitable. Bullying is not merely simple conflict, disagreement, or competition. Bullying begins with the inclusion of some and the exclusion of others. It progresses to behavior (by one or more children toward one or more others) intended to establish, maintain, and exploit power. Bullies use intimidation, threats, embarrassment, extortion, manipulation, planned

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betrayal, and calculated aggression as means to create feelings of fear, shame, or low self-esteem in their victim(s). Bullying first appears in early elementary and peaks during middle school. It occurs most often in unstructured contexts, such as the lunchroom, hallways, bathrooms, recess yard, or cyberspace. Being either a victim or perpetrator of bullying is a common experience (~20% each) in middle childhood. Some children (~5%) are both in different contexts. Most cases of bullying are isolated, short-term events. Whether bullying becomes a persisting pattern of behavior in the perpetrator depends on temperament, home environment, and the response of authority figures. How traumatizing bullying is to the victim depends on the severity and context of the event, its duration, whether it recurs, the resiliency of the child, and how it is handled by the adults in the child’s world. Clinicians, teachers, and school administrators investigating possible bullying should ask about context, patterns, relationships, perceptions, and attributions. If they did not directly witness the bullying, they should hear several versions of the story from different observers. The parties should not be made to confront each other, however. Forced apologies will not help. Mediation or other conflict-resolution approaches assume a false equivalency, which can retraumatize the victim(s) and may inadvertently reward the bully(s). Perpetrators need to learn that bullying behavior is not tolerated and will not work because their teachers “see through them” and thus cannot be fooled. Victims need to know that the bullying is not their fault, their peers support them, and adults will protect them in the future. Long-term bullying outcomes vary but can be poor for victims, perpetrators, and bystanders. Many bullies become repeat offenders. Habitual bullies do worse in school, have lower educational attainment, display more externalizing psychopathology, and are more likely to engage in substance abuse, domestic violence, and criminal behaviors as adults than nonhabitual bullies. Victims of an isolated bullying event usually recover, but chronic bullying leaves scars in its victims, including social anxiety, depression, and a negative self-image. Sometimes bullying becomes a persistent pattern

TABLE 8.6 Risk Factors for Social Difficulty  

Risk Factor

Examples and Issues

Presence of a disability (interfering with participation)

Physical or functional, accommodations required

Differences in appearance (from the group)

Skin color, ethnicity, size/habitus, physical deformity

Differences in cultural practice (from the group)

Dress, grooming, religious observance

Speech, language, communication problems

Expressing self verbally, understanding others

Social thinking (cognition) deficits

Autism, social pragmatic communication disorders

Learning difficulty, difference, delay

The receipt of special education services

Emotional dysregulation

Cries easily, frequent displays of emotion

Internalizing behaviors

Anxiety, withdrawal

Externalizing behaviors

Aggression, hyperactivity, bullying (can cut either way, also being socially rewarded in some cases)

SECTION 2  Life Stages

Emotional and Behavioral Difficulties















When parents ask if a behavior is normal, it is best not to dichotomize but see the behavior along a spectrum from highly adaptive/appropriate to extremely maladaptive/disruptive. Maladaptive behavior that is not disruptive is often called internalizing because the harm is directed inward. Externalizing, disruptive behaviors attract greater attention sooner but may actually be adaptive in certain situations. Several variables impact the likelihood a school-age child will experience emotional difficulties: • Early toxic stress from adverse childhood experiences (ACEs) • Parenting skills and ongoing parental stress/impairment • Developmental challenges (motor, language, learning difficulties) • Social difficulties (bullying, peer rejection) • Temperament (usually apparent from early infancy) • Coping skills and resiliency • Family history of mental illness Children with developmental delays, autism, or intellectual disability often possess greater awareness of their differences than appreciated by parents and teachers. They may also experience emotion that exceeds their ability to understand, communicate, or cope, resulting in misbehavior that is easily

misunderstood by adults. On the other hand, emotional difficulties can hinder social success or learning in otherwise typically developing children. They may masquerade as autism or ADHD, interfere with standardized testing, or create the impression of a learning or intellectual disability.









Externalizing Behavior Impulsive, hyperactive, attention-seeking, and aggressive behaviors (see Chapters 49 and 55) are disruptive to classroom and family life. Therefore they are likely to prompt stronger discipline and greater concern than internalizing behaviors. Verbal and physical aggression occur most frequently in the context of tantrums. Tantrums occur in four phases: 1. Prodrome, during which the child is visibly irritable, tense, bored, or restless. Most parents can learn to recognize this phase and they report knowing something is coming. 2. Blowup, during which the child loses all emotional selfcontrol and manifests the most upsetting behaviors. 3. Letdown, during which the child may be withdrawn, depressed, remorseful, or still angry but no longer acting out. The child may apologize or make self-deprecating remarks during this phase. 4. Recovery, when everything returns to normal, as if nothing ever happened. It is important for parents to learn to intervene in the prodromal (first) phase of this cycle. Once the blowup happens, it is too late to teach coping skills. Intervening means identifying and talking about feelings. The parent might say, “Something seems to be bothering you.” Ultimately, children may learn to do this strategy for themselves (the goal). If the first stage is missed, it is best to wait until it is all over and things are back to normal (stage 4). At that point, parents can revisit the episode when everyone is calm and employ some of the problem-solving techniques discussed in Table 8.7.

toward a particular child by many perpetrators. Peer rejection is when a child is shunned by most or all of a peer group. Once established, peer rejection is a highly stable characteristic over time and is even likely to relapse in a new venue and peer group. It is a serious social outcome of bullying, causing persistent feelings of isolation and low self-esteem in the victim, which are highly associated with later depression, aggression, conduct disorder, and suicide (see Fig. 8.1) (McDonald & Rubin, 2017). Unfortunately, bullying and peer rejection are problems that cannot be easily solved on a case-by-case basis. A preventive approach is needed at a school, district, or community-wide level. Antibullying programs with the greatest demonstrated success are those in which students, teachers, and parents are all actively engaged. They combine teacher training (to recognize bullying quickly and unambiguously), a true zero-tolerance policy, and activities aimed at changing school culture to support and celebrate individual differences. The latter teach children problem-solving, empathy, and perspective-taking skills. All these measures together promote helpful bystander responses (intervening to help victims, reporting to the authorities, rather than avoiding involvement by turning away), which is the key to reductions in bullying. Such programs need strong leadership from the top of a school or district, they do not tend to work as grassroots, parent- or teacher-sponsored, bottomup initiatives. Many manualized programs exist, but they are only likely to be helpful when implemented as intended. When schools select wisely from among the whole-school bullying prevention programs that have strong evidence of effectiveness and are feasible to implement in their setting, they are likely to experience important and sustained beneficial effects for all students (see Chapter 17).



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Anxiety and Internalizing Behavior Anxiety in preadolescent children is relatively undifferentiated, often presenting with symptoms that cross boundaries between different subtypes (see Chapter 51). The presentation in an individual child can change dramatically with age. The most common forms of anxiety in middle childhood are social anxiety, somatization (which often progresses to panic disorder as a child approaches adolescence), pathologic perfectionism, and school avoidance. When separation anxiety (more common in preschoolers) persists into middle childhood is often due to a history of trauma and loss. Anxiety can sometimes be predicted by an infant with an inhibited temperament, identifiable at a very young age and moderately heritable. It is also created or exacerbated by a variety of ACEs (Rapee, Schniering, & Hudson 2009), overprotective or negative parenting, as well as cognitive biases to either overrespond to threat or interpret ambiguity in a negative fashion (something that can be taught or discouraged by parents, teachers, and therapists). Anxiety is the most common psychiatric problem in middle childhood, with an estimated prevalence of 15% to 20%. Anxiety during elementary school strongly predicts later mood disorders, substance use, academic underachievement,

CHAPTER 8  Middle Childhood TABLE 8.7  Counseling Parents: How to Promote Emotional Regulation

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1. Give permission to feel/language to talk about feelings: • Ask about, acknowledge, accept

“How you feel?” “I see you’re worried” “It’s okay to feel mad” “Feelings are never wrong, but we need to …”

• Avoid directives/negation/disapproval

“Calm down” “Don’t be sad” “You shouldn’t be …” “Boys don’t cry”

• Identify, reflect, and discuss

“Tell me what happened” “Maybe you feel scared that …”

• Sympathize and share

“I don’t blame you for feeling …” “I remember a time …”

2. Encourage positive self-talk: “I did my best” “Next time I’ll do better” “I can handle this” “I’m not going to let it get to me” “I can do it, it just takes practice” “She didn’t do it on purpose, it was an accident” “This happens to everyone sometimes”

Discourage negative: “I’m a failure” “I might as well give up” “I can’t handle it” “I’m no good” “I can’t do anything right” “She doesn’t like me” “He was out to get me”

3. Use typical triggers as an opportunity to teach and practice problem solving (employ this either before the meltdown or when things have returned to normal, not in the midst of a tantrum):

• Define the trigger and the emotional reaction: Discuss, role play when relaxed • Brainstorm what I could do about it: Generate multiple possible solutions (good/bad) • Evaluate what would happen if …: Think through consequences of each solution • Implement the chosen solution: What will it take for me to follow through? • Review the result: How did it turn out?

4. Practice relaxation and “turtle” skills for physiologic/somatic responses:

• Okay to take a timeout when feeling strong feelings:

Go to a safe place or imagine you are a turtle and withdraw inside shell • Deep breathing exercises: Stop, take a deep breath, count to 100 • Guided imagery: Close your eyes, imagine you are in your turtle shell, treehouse, beach, etc. • Progressive muscle relaxation: Start with feet and work up • Meditation: Never too young to start, many do-it-yourself apps (HeadSpace, Calm, Breath2Relax, Pacifica)

5. Use timeouts/token economies for specific behaviors:

• Ignore what you can: Any attention, even negative, can be more reinforcing than none • Have a positive baseline: Consequences lose their impact if everything is always negative • Pick your battles wisely: Focus only on dangerous, disruptive, hurtful behaviors • Timeout: Withdrawal of attention for unwanted behavior • 1 min/yr of age; child must be quiet for last half to be released • Predetermined (boring) space used only for this purpose • Parent should be matter of fact, unemotional when it’s over • Token economy: Rewards for desired behaviors • Tokens, stars, stickers, or points accumulated, “Cashed in” for specified rewards • Privileges, parental time, special activities preferred over material things

6. Promote open communication, self-awareness, and a growth mindset (see Chapter 101):

• Recognize and praise efforts (not just results): • Progress not perfection, “catch ’em being good”; avoid praising “easy” successes • Use positive, forward-looking language: • “That was great, you calmed yourself down” “I’m so proud of you for …” “You are becoming a person who can stay cool and control your own anger …”

• Be on the lookout for use of words (even for negative emotions): • Self-restraint, efforts at independent problem solving, use of coping strategies • Use zones of regulation (blue/green/yellow/red) to monitor and communicate about emotional state: • (coordinate with school); • Teach child to engage coping strategies/problem-solving skills in yellow and blue zones • Frame failure/frustration as universal and good: • Everybody fails; use as an opportunity to learn and become better 7. Model skills: Don’t escalate or overreact to child Avoid tantrums (verbal or physical) of your own Calmly verbalize your own feelings, and the reasons for them Never blame others or expect them to fix it for you

Articulate coping strategies: Talk through your own problem solving in front of the child (“I’m frustrated so I’m making things worse. I think I’ll take a break to calm down, then come back later and try again”; “That made me mad, but I understand … maybe things will go better for me next time”)

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and even suicide (see Chapter 50) (Woodward & Fergusson, 2001). It is a great masquerader, frequently mistaken as ADHD, SLD, oppositional defiant disorder, or even highfunctioning autism (Allen, Benningfield, & Blackford, 2020). Even when recognized, it tends to be undertreated; 80% of cases fail to receive appropriate evidence-based care even though anxiety has been shown to respond well to a variety of interventions (cognitive behavioral therapy, parent training, psychopharmacology) (Walkup et al., 2008) and can be prevented by school-based programs (Neil & Christensen, 2009). Undertreatment is partially due to a lack of appropriate resources in the community (Merikangas et al., 2010, 2011) and partly due to a misperception among physicians, especially those in primary care, that anxiety is less dangerous and less impairing than mood disorders (Tulisiak et al., 2017). Successful intervention during middle childhood lowers later risk for depression and suicide (Keeton et al., 2019), although relapse rates are high (Ginsburg, 2018). Depression is less common in middle childhood than during adolescence, and less common than anxiety or mood dysregulation. Although suicidal ideation occurs frequently, serious suicidality (intent, attempts, plans, and completed suicide) is quite rare. Depression at this age also tends to be chronic rather than acute. School-age children are more likely to fit the Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) criteria for persistent depressive disorder than major depression. Therefore instructions commonly found in depression screening instruments to report only symptoms occurring in the last 2 weeks may not be appropriate for this age group. It would be better to ask about symptoms displayed frequently over the last year.

CLINICAL IMPLICATIONS Concerns about development, learning, or behavior are among the most common reasons children see their pediatrician (20%–30% of all visits). Parents often raise concerns in this area, or a clinician may uncover them with a few insightful questions, even during visits with a different agenda. Clinicians have their biggest impact on preschoolers through their parents, by influencing parenting behavior. During middle childhood interactions with the doctor can become helpful for the child directly, especially when the child feels listened to, seen, respected, and understood.

Approach to the Visit To work effectively with children in middle childhood, any adult (teacher, coach, therapist, or health care clinician) must gain their trust (see Chapters 75 and 77). Younger children trust based on parental demeanor toward the new/strange adult. Adolescents can bestow trust based either on the role/ credentials of the provider or on the relationship they build with them. In middle childhood a child’s trust is always built on the relationship and must be earned in that context, whether it is the introductory phase of psychotherapy, the first visit to a doctor, or the first few weeks in a new classroom. Adults gain children’s trust by being attentive and showing

interest in what the child is saying and expressing through play or behavior. Meet children where they are in terms of interests and affect, but do not put on an act. Children know when you are being genuine. If they are in the room, do not leave them out of conversations with their parents. The skills of motivational interviewing can be highly effective at this age, not only for motivating change but for gaining trust as well. Be nonjudgmental, reflect back to them what you hear, then take it another step. Give them a voice, especially in decisions that affect them. The legal power of consent still lies with parents at this age, but it is best if school-age children assent to care. Obtaining that assent is a shared responsibility of parents and clinicians. Children ought to understand what is going to happen, why, and what the expected benefits, risks, and side effects are to the extent they are cognitively able and emotionally ready. Their questions or worries should be addressed in a manner appropriate to their mental age. School-age children are capable of sabotaging care. Proceeding over their expressed objection should be done with circumspection by parents and physicians, only when felt to be absolutely necessary, and only with respectful and empathetic explanation of the reasons. Prior to the onset of adolescence, a child’s need for (and right to) privacy from their parents is quite limited, and a parent’s right to know about and control what happens with their child usually takes precedence. Most verbal children in middle childhood are happy to talk with you (if you gain their trust). Unlike an adolescent, they will not usually withhold information just because their parents are present. Indeed, most children this age will happily say anything in front of their parents or even their friends’ parents (as any parent who has ever driven school carpool knows). Many children at this age develop a sense of modesty about their body, which should be respected by parents and physicians. Parents can be asked to turn away while examining private parts, which should otherwise be clothed or covered. Beyond this exam, in most cases there is usually nothing that needs to be done or discussed with the child that parents should not be present for during middle childhood. Exceptions to this general rule include when child abuse is suspected, psychometric testing is being conducted, or situations where significant family discord/conflict exists. If you must examine or interview a latency-age child without the parent present, it is best to do so with a third person in the room. Conversely, during middle childhood there are many reasons to want to interview parents alone, without the child present. Parents of school-age children are more likely than parents of preschoolers to be angry with or blame children for presenting problems. They may be reasonably reluctant to discuss school, behavior, family financial, or marital issues in front of the child. Children at this age will always be listening if they think the conversation is about them or their family, even when they do not appear to be, but they may only partially understand what they hear. They may be frightened or come away with harmful misperceptions that could have been avoided by having them be out of the room (e.g., “I’m dumb,” “I’m in trouble,” “Mom and Dad are fighting”).

 

CHAPTER 8 Middle Childhood

Private feedback to the parents may or may not be necessary, but the child should usually receive some direct feedback as well. Near the transition to adolescence a combined/hybrid approach to the visit may need to be used in which some time is spent alone with both child and parent(s). School-age children know how to be examined. Aside from modesty and needle phobia, most have no difficulty cooperating with a physical exam (see Chapter 75). They are also now accustomed to talking with adults outside their family. These factors allow reversing the typical preschool encounter workflow: Focus first on the child rather than the parent(s). This design sends positive messages about respect, responsibility, and involvement in their own health care. It telegraphs that you are primarily there for them, not their parents, and it “grabs” them in a way that is more likely to keep them engaged. First, greet and introduce yourself to the child. Acknowledge the adult(s) briefly or invite the child to introduce them to you, then turn right back and launch into the child interview. Most parents will get (and even appreciate) what you are doing, but if necessary nonverbal signals can be sent that “it’s not your turn yet.” Do not begin with the question, “What brings you in today?” The child may not know, and such questioning can feel threatening; if needed, this information can be gathered ahead of time from parents by a nurse or medical assistant. Instead, say, “Tell me about yourself ” or “What’s been going on lately?” Kids age 6 to 8 years may struggle to field such an open-ended question, in which case you should move quickly to more closed-ended inquiry. Most 9- to 12-year-olds should have no trouble running with it, however. After interviewing the child, a pediatric clinician may move straight to a physical examination. Comment on what you see and what you are looking for (school-age children are usually fascinated and very glad to hear that they are normal). Some shy or anxious kids do better being examined first because they may need time to warm to the situation, so you can start the interview as the exam proceeds. Once you are done interviewing and examining, dismiss the child and talk to the parent(s) alone (this may present logistical challenges depending on your clinic layout and staffing). Call the child back in to provide feedback at the end.

Sexuality School-aged children have sexual feelings that are not latent but often are suppressed or sublimated. Nevertheless, sexual thoughts cause excitement in children at this age, and they have a great deal of curiosity about anatomic differences, functions, gender roles, and identity (see Chapters 73 and 76). They are quite sensitive to subtle messages about what is normal and whether these thoughts are okay to talk about. They may feel guilt for having sexual thoughts and feelings, and they may develop shame if they latch on to the idea that they themselves are not normal. It is during middle childhood that many lesbian, gay, bisexual, transgender, questioning (LGBTQ) youth first self-identify, and they are at particular risk for developing self-esteem and adjustment difficulties related to feeling different.

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Throughout middle childhood, there is a growing awareness of sexuality and of what constitutes appropriate versus inappropriate, public versus private behavior. At least 90% of boys and 50% to 60% of girls masturbate before they enter adolescence. As they progress through the age range it becomes increasingly prevalent but more hidden. Thus parents of children in the earlier half of middle childhood are more likely to be aware of (and concerned about) the behavior. Professionals should frame this discovery in the context of normal development and help parents to see it as an opportunity for teaching and discussion. In the face of all this it is unwise for parents or clinicians to be silent about sexuality with school-age children. At best, this leads to ignorance and a feeling that, metaphorically, there is an elephant in the room; at worst, peers media, or even pornography fill the gap. Open discussion about gender and sexuality with parents and professionals during middle childhood prevents misinformation and sets the stage for open discussion with partners later in life, the basis for both consent and the establishment of satisfying intimate relationships. For LGBTQ youth it may be even more important to provide a foundation for self-esteem and acceptance that will support their adjustment throughout the lifespan. Therefore discussion about sexuality should begin as soon as a child starts to ask questions or shows interest in body parts, and certainly no later than the early elementary school years. The topic should be framed in its proper context of feelings and relationships. By the time they are 8 years old, however, children should know about the body changes they can expect when puberty begins. Before entering middle school, all children should have a basic knowledge about how pregnancy happens (and can be prevented), the nature of consent, and sexually transmitted illnesses.

Trauma and Loss Children regularly experience loss and separation. Parental divorce, losing a friend, moving to a new town, transitioning to a new classroom, or discontinuing psychotherapy are but a few common examples. Sometimes these events are unexpected, but often they can be anticipated. In the latter instance it is best to prepare the child and, if possible, arrange for a way to say goodbye and bring closure to the relationship. Feeling deserted and not allowed a farewell may cause the child to reject both the lost attachment and the replacement (such as a new teacher). Adults should talk honestly but simply about what happened (or is going to happen) in a way that gives the child permission to feel and express emotions. Death of a loved one is the ultimate loss. In middle childhood children comprehend that death is irreversible and universal. They can understand the dead are no longer here with us and the basic beliefs about death of most religions. It is normal for school-age children to focus on physical processes (such as the means of death or details about burial/cremation) about which adults may be squeamish. Children this age should usually be allowed to attend funerals if they were close to the deceased because it provides closure in the same way as

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SECTION 2  Life Stages

it does for adults and it provides a useful model for how adults share feelings and give/accept emotional support. Child abuse (see Chapter 15) frequently goes unreported or remains unsubstantiated in middle childhood because of the child’s own confused and ambivalent feelings. Abuse may leave no outward physical signs, as is often the case with sexual abuse. School-age children may identify strongly with the perpetrator, especially if the person is also a source of love and protection. The abuse may be scary, painful, or disgusting to them, while at the same time providing attention, power, or serving some other unmet emotional need. Victims often feel guilty and responsible themselves. Furthermore, they have often been told not to tell, with accompanying threats they are old enough to understand but not old enough to be skeptical of. Children of the 21st century have unprecedented exposure to disasters, war, and terrorism (see Chapter 22), both direct and indirect, through media (see Chapter 21). Children this age have a greater capacity to understand these events than younger children do, but still find them very confusing. They often harbor inaccurate fears and ideas about what is going on. Their view tends to be focused on their own safety and that of their immediate family members. These thoughts can become even more traumatizing if they are separated from their parents and family. When this happens, the sooner family reunification occurs, the better. School-aged children can react to trauma with acute distress, developmental regression, internalizing and/or externalizing behaviors, reenacting the trauma in play, and in some cases development of posttraumatic stress disorder. Certain types of traumas are more harmful than others: Sustained or repeated trauma is more harmful than brief trauma, trauma that involves permanent loss or disruption of established lifestyle is worse than trauma that involves fear without loss, and intentionally inflicted trauma is more harmful than natural disasters or so-called acts of God. News about a disaster, war, or other atrocity as conveyed through the media can have the effect of repeating the exposure and magnifying the harm. During such events, parents should attempt to limit their children’s news consumption (Pine, Costello, & Masten, 2005).

Collaboration—It Takes a Village Teachers are particularly important in supporting the development of school-age children. Positive relationships with teachers are strongly correlated with a child’s academic success and can mitigate other psychosocial and neurodevelopmental risk factors (Liew, 2012). During middle childhood the influence of other adults (coaches, counselors, cops, clergy, therapists, shopkeepers, bus drivers, and neighbors) also grows. Community resources such as childcare, sports leagues, and recreational programs available to children can be vitally important, especially for children with single and/ or working parents. Recreational activities can help children with psychopathology maintain physical, academic, and social competencies on a par with other children (Browne, Byrne, Roberts, Gafni, & Whittaker, 2001). More physically active youth been shown to have larger basal ganglia and

hippocampi and show better attention, coordination, and memory skills (Bidzan-Bluma & Lipowska, 2018). As trusted expert members of their community, pediatric professionals have the potential to impact middle childhood development and quality of life well beyond the exam room. Clinicians should foster good working relationships with their local schools, with leaders of local sports and recreational programs, and with colleagues in other disciplines working with children in their community. They can provide advice at both a population and an individual level, reaching out and collaborating around specific children or groups of children. Medical and educational privacy laws (e.g., Health Insurance Portability and Accountability Act, Family Education Rights and Privacy Act) do not always serve a child’s best interests in this regard. They were never meant to be barriers to collaboration, but in practice often can be. Clinicians caring for school-age children should therefore consider routinely asking parents to sign a release of information for their child’s school (and perhaps other key adults) at their yearly health maintenance visit, in advance of a specific need to collaborate.

Advising Parents (and Teachers) Middle childhood can be a most wonderful, relatively carefree time for families raising children. Parenting styles that focus on supporting autonomy while setting limits result in stronger self-regulation skills than authoritarian styles focused on control and compliance (see Chapter 13). Clinicians can encourage all parents to convey a clear sense of right and wrong in a gentle, noncritical manner. Explain how to be consistent in expectations and responses, both over time and between parents. When two parents disagree about discipline, presenting a united front is more important than which of them is right. Children need to be given permission to feel, and home should be a safe space to talk about emotions. Children who develop the language of emotions experience benefits beyond emotional regulation later in life, including improved ability to ask for and receive help, a greater tendency to support and express concern for others, and ultimately find it easier to achieve intimacy and stability in their relationships. Parents can also support their child’s social development through participation in athletics, clubs, cultural activities, play dates, and sleepovers, but parents should avoid overscheduling. Children also need time for unstructured free play. Parents should encourage independence but stay involved by being a coach, scout leader, or classroom parent. It is important to set aside a regular study time with minimal distractions after school or in the evening. Parents should be available to assist but avoid doing the homework for the child. Parents should give a child gradually increasing responsibilities around the house commensurate with the child’s abilities and, if possible, provide an allowance to teach budgeting and saving skills. In general, rewards and privileges should be earned. Finally, clinicians should reassure parents (and teachers) that there is a lot they can do themselves to promote self-regulation and help the child develop a healthy self-concept (see Table 8.7), and that help is available from many quarters when needed.

 

CHAPTER 8 Middle Childhood

CONCLUSION In our opening vignette three children wrestle with the challenges of middle childhood in different ways. Despite its image of tranquility relative to early childhood and adolescence, this is an age of profound growth and change. Middle childhood is a coming-out period, the time when most children start building a life beyond the family and an identity of their own. Improving powers of reasoning, memory, and self-regulation supports the acquisition of new skills and knowledge at a dizzying pace. Adjusting to the classroom and finding acceptance among peers are the key early challenges. School provides the milieu, peers the medium, and play the means by which the majority of 6- to 12-year-old children explore the world and practice for adult life. In the process they develop and continually refine emotional coping skills, self-concept, and a moral sense. Parents considering home schooling must think carefully about how their children will meet these developmental challenges without such a coming-out period. The school-age child is capable of cooperating with clinicians, carrying on a conversation, and being included in shared decision making about their own care. Clinicians who focus on them first, respect their voice, understand their world, and who can be authentic gain the child’s trust. Trusted adults can speak honestly and simply to children during middle childhood about sexuality, media, societal upheaval, separation, trauma, and loss. By doing so, they help the child process experiences and sort their questions into the proper context. Parents can encourage and model talking about feelings but should take care about what a child this age sees and overhears. Adult conversations, especially about the child or family, may be misconstrued in harmful ways. Direct or indirect exposure to some adult activities can be traumatizing or may reinforce inappropriate ideas and behaviors. In recent years middle childhood concerns have often taken a backseat to other developmental stages in policy decisions about the commitment of public resources. This situation may be changing, however, as a result of the COVID-19 pandemic. As this book is being written, an entire generation of schoolchildren is experiencing profound, long-lasting disruptions to their schooling and social experiences. Some are suffering more obviously and acutely than others, but society will be dealing with long-term impacts on their development for decades to come. The consequences will shed new light on the importance of school and community, and on the vital role pediatricians and mental health clinicians play in local and national advocacy. Parents face new challenges also, and many are under immense strain. Lucky families who manage to cope successfully may someday look back on this time with gratitude for the precious gift of extra time together during childhood’s golden years.

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Bidzan-Bluma, I., & Lipowska, M. (2018). Physical activity and cognitive functioning of children: A systematic review. International Journal of Environmental Research and Public Health, 15(4), 800. https://doi.org/10.3390/ijerph15040800. Bouchard, T. J. (2009). Genetic influence on human intelligence (Spearman’sg): How much? Annals of Human Biology, 36(5), 527–544. https://doi.org/10.1080/03014460903103939. Browne, G., Byrne, C., Roberts, J., Gafni, A., & Whittaker, S. (2001). When the bough breaks: Provider-initiated comprehensive care is more effective and less expensive for sole-support parents on social assistance. Social Science & Medicine, 53(12), 1697–1710. https://doi.org/10.1016/s0277-9536(00)00455-x. DelGiudice, M. (2018). Middle childhood: An evolutionarydevelopmental synthesis. In N. Halfon, C. B. Forrest, R. M. Lerner, & E. M. Faustman (Eds.), Handbook of life course health development (pp. 95–107). Cham (CH). Springer Open. Erlenmeyer-Kimling, L., Rock, D., Roberts, S. A., Janal, M., Kestenbaum, C., Cornblatt, B., . . . Gottesman, I. I. (2000). Attention, memory, and motor skills as childhood predictors of schizophrenia-related psychoses: The New York High-Risk Project. American Journal of Psychiatry, 157(9), 1416–1422. https://doi.org/10.1176/appi.ajp.157.9.1416. Florez, I. R. (2011). Developing young children’s self-regulation through everyday experiences. Young Children; National Association for the Education of Young Children, 66(4), 46–51. Ghetti, S., & Bunge, S. A. (2012). Neural changes underlying the development of episodic memory during middle childhood. Developmental Cognitive Neuroscience, 2(4), 381–395. https:// doi.org/10.1016/j.dcn.2012.05.002. Ginsburg, G. S., Becker-Haimes, E. M., Keeton, C., Kendall, P. C., Iyengar, S., Sakolsky, D., . . . Piacentini, J. (2018). Results from the Child/Adolescent Anxiety Multimodal Extended LongTerm Study (CAMELS): Primary anxiety outcomes. Journal of the American Academy of Child & Adolescent Psychiatry, 57(7), 471–480. https://doi.org/10.1016/j.jaac.2018.03.017. Gülgöz, S., Glazier, J. J., Enright, E. A., Alonso, D. J., Durwood, L. J., Fast, A. A., . . . Olson, K. R. (2019). Similarity in transgender and cisgender children’s gender development. Proceedings of the National Academy of Sciences, 116, 24480–24485. https://doi. org/10.1073/pnas.1909367116. Keeton, C. P., Caporino, N. E., Kendall, P. C., Iyengar, S., Lee, P., Peris, T., . . . Ginsburg, G. S. (2019). Mood and suicidality outcomes 3–11 years following pediatric anxiety disorder treatment. Depression and Anxiety, 36(10), 930–940. https://doi. org/10.1002/da.22944. Larson, K., Russ, S. A., Kahn, R. S., & Halfon, N. (2011). Patterns of comorbidity, functioning, and service use for US children with ADHD, 2007. Pediatrics, 127(3), 462–470. Liew, J. (2012). Effortful control, executive functions, and education: Bringing self-regulatory and social-emotional competencies to the table. Child Development Perspectives, 6(2), 105–111. https://doi.org/10.1111/j.1750-8606.2011.00196.x. Mah, V. K., & Ford-Jones, E. L. (2012). Spotlight on middle childhood: Rejuvenating the “forgotten years.” Paediatrics & Child Health, 17(2), 81–83. https://doi.org/10.1093/pch/17.2.81. McDonald, K. L., & Rubin, K. H. (2017). Peer relationships and influence in childhood: Reference Module in Neuroscience and Biobehavioral Psychology, Elsevier. https://www.sciencedirect. com/science/article/pii/B9780128093245065123. Merikangas, K. R., He, J. -P., Burstein, M., Swanson, S. A., Avenevoli, S., Cui, L., . . . Swendsen, J. (2010). Lifetime prevalence of mental disorders in U.S. adolescents: Results

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from the National Comorbidity Survey Replication–Adolescent Supplement (NCS-A). Journal of the American Academy of Child & Adolescent Psychiatry, 49(10), 980–989. https://doi. org/10.1016/j.jaac.2010.05.017. Merikangas, K. R., He, J. -P., Burstein, M., Swendsen, J., Avenevoli, S., Case, B., . . . Olfson, M. (2011). Service utilization for lifetime mental disorders in U.S. adolescents: Results of the National Comorbidity Survey-Adolescent Supplement (NCS-A). Journal of the American Academy of Child & Adolescent Psychiatry, 50(1), 32–45. https://doi.org/10.1016/j.jaac.2010.10.006. Merritt, D. (2012). Typical speech and language development for school-age children: A checklist for school nurses. http://ctserc.org/component/k2/item/130-typical-speech-andlanguage-development-for-school-age-children Moffitt, T. E., Arseneault, L., Belsky, D., Dickson, N., Hancox, R. J., Harrington, H., . . . Caspi, A. (2011). A gradient of childhood self-control predicts health, wealth, and public safety. Proceedings of the National Academy of Sciences, 108(7), 2693–2698. https://doi.org/10.1073/pnas.1010076108. Neil, A. L., & Christensen, H. (2009). Efficacy and effectiveness of school-based prevention and early intervention programs for anxiety. Clinical Psychology Review, 29(3), 208–215. https://doi. org/10.1016/j.cpr.2009.01.002. Nippold, M. A. (2016). Later language development: School-age children, adolescents, and young adults (4th ed.). PRO-ED. Pine, D. S., Costello, J., & Masten, A. (2005). Trauma, proximity, and developmental psychopathology: The effects of war and terrorism on children. Neuropsychopharmacology, 30(10), 1781–1792. https://doi.org/10.1038/sj.npp.1300814. Ponitz, C. E. C., McClellan, M. M., Matthews, J. S., & Morrison, F. J. (2009). A structured observation of behavioral self-regulation and its contribution to kindergarten outcomes. Developmental Psychology, 45(3), 605–619. https://doi.org/10.1037/a0015365. Rapee, R. M., Schniering, C. A., & Hudson, J. L. (2009). Anxiety disorders during childhood and adolescence: Origins and treatment. Annual Review of Clinical Psychology, 5(1), 311–341. https://doi.org/10.1146/annurev.clinpsy.032408.153628. Rey-Casserly, C., McGuinn, L., & Lavin, A. (2019). School-aged children who are not progressing academically: Considerations for pediatricians. Pediatrics, 144(4), e20192520. https://doi. org/10.1542/peds.2019-2520. Schmitt, J. E., Raznahan, A., Clasen, L. S., Wallace, G. L., Pritikin, J. N., Lee, N. R., . . . Neale, M. C. (2019). The dynamic

associations between cortical thickness and general intelligence are genetically mediated. Cerebral Cortex, 29(11), 4743–4752. https://doi.org/10.1093/cercor/bhz007. Shaw, P., Greenstein, D., Lerch, J., Clasen, L., Lenroot, R., Gogtay, N., . . . Giedd, J. (2006). Intellectual ability and cortical development in children and adolescents. Nature, 440(7084), 676–679. https://doi.org/10.1038/nature04513. Super, C. M., Axia, G., Harkness, S., Welles-Nystrom, B., Zylicz, P. O., Parmar, P., . . . Mcgurk, H. (2008). Culture, temperament, and the “difficult child”: A study in seven western cultures. International Journal of Developmental Science, 2(1–2), 136–157. https://doi.org/10.3233/dev-2008-21209. Tulisiak, A. K., Klein, J. A., Harris, E., Luft, M. J., Schroeder, H. K., Mossman, S. A., . . . Strawn, J. R. (2017). Antidepressant prescribing by pediatricians: A mixed-methods analysis. Current Problems in Pediatric and Adolescent Health Care, 47(1), 15–24. https://doi.org/10.1016/j.cppeds.2016.11.009. Walkup, J. T., Albano, A. M., Piacentini, J., Birmaher, B., Compton, S. N., Sherrill, J. T., . . . Kendall, P. C. (2008). Cognitive behavioral therapy, sertraline, or a combination in childhood anxiety. New England Journal of Medicine, 359(26), 2753–2766. https://doi.org/10.1056/nejmoa0804633. Wanless, S. B., McClelland, M. M., Acock, A. C., Ponitz, C. C., Son, S. H., Lan, X., Morrison, F. J., Chen, J.-L., Chen, F.-M., Lee, K., Sung, M., & Li, S. (2011). Measuring behavioral regulation in four societies. Psychological Assessment, 23(2), 364–378. https:// doi.org/10.1037/a0021768. Wolraich, M. L., Hagan, J. F., Allan, C., Chan, E., Davison, D., Earls, M., Evans, S. W., Flinn, S. K., Froehlich, T., Frost, J., Holbrook, J. R., Lehmann, C. U., Lessin, H. R., Okechukwu, K., Pierce, K. L., Winner, J. D., & Zurhellen, W. (2019). Clinical practice guideline for the diagnosis, evaluation, and treatment of attention-deficit/hyperactivity disorder in children and adolescents. Pediatrics, 144(4), e20192528. https://doi. org/10.1542/peds. 2019-2528. Woodward, L. J., & Fergusson, D. M. (2001). Life course outcomes of young people with anxiety disorders in adolescence. Journal of the American Academy of Child & Adolescent Psychiatry, 40(9), 1086–1093. https://doi.org/10.1097/00004583200109000-00018.

9 Adolescence Bonnie Halpern-Felsher, Marcia Zorrilla, Adrienne Lazaro, and Arash Anoshiravani

For additional material related to the content of this chapter, please see Chapters 2, 3, 4, 49, 50, 51, 74, and 75.

VIGNETTES









• Vignette 1: Ally, age 12 years, looks in the mirror and hardly recognizes herself. It feels to her like overnight she grew 4 inches and gained hips and breasts. She isn’t sure how she feels about this new body. However, she really likes the clothing she has just bought, identical to her best friend’s. • Vignette 2: Like many of her friends, Yasmine, a 16-yearold high school sophomore, is thinking about having sex. She knows about the risks of getting a sexually transmitted infection (STI) but does not know how to talk to her boyfriend about birth control. Despite having been together for 4 months, she is worried that he will be angry with her if she asks him to wear a condom. He may even refuse to be her boyfriend anymore. • Vignette 3: Colin is excited to go to college but is worried about how a decision to go to his first-choice school may negatively impact his family’s financial status. He is also reluctant to go as far away as he had originally planned because it would mean putting great distance between himself and his new partner. He is writing lists of pros and cons about each potential school to make a good decision. • Vignette 4: Justin is being persistently pressured by his friends to try vaping. He is curious about it as he has heard about vaping for so long. But he has also heard about the health harms, and he is afraid to get in trouble. He isn’t sure what to do. He is looking for help in making his decision.

INTRODUCTION Adolescence is the dynamic period between middle childhood and adulthood. Definitions of adolescence vary. The American Academy of Pediatrics (AAP) defines adolescence as the period from ages 11 to 21 (Hagan, Shaw, & Duncan, 2007), whereas the World Health Organization (WHO) defines it as the period from ages 10 to 19 and youth as the period from 15 to 24 years (n.d.). Many consider adolescence to begin with the onset of puberty, typically marked by breast enlargement and the onset of menses, or development of pubic hair and testicular enlargement. Regardless of definition, most experts do not view adolescence as a single age group, but as three distinct but overlapping phases: early adolescence (~10–13 years old), reflected in Vignette 1; middle

adolescence (~14–16 years old), reflected in Vignette 2; and late adolescence (~≥17 years old), as reflected in Vignette 3 (Table 9.1). Adolescence is a period of significant and rapid physical, cognitive, psychosocial, and emotional growth. It is also a time when adolescents make decisions about school, health and healthcare, friends, and whether to engage in a range of behaviors that could have profound implications on their health and wellbeing. While normal and normative, these decisions and the resulting behaviors can be very stressful and can have long-lasting consequences, as reflected in Vignette 4. In this chapter we discuss the multiple dimensions of adolescent development. We approach adolescent decision making, health, and behavior using two frameworks: the biopsychosocial model and the ecological systems theory of development (see Chapter 2). Both emphasize that multiple factors converge to explain adolescent development. According to the biopsychosocial model (Engel, 1977), development and health are determined by the reciprocal interactions between biology, psychology, and social factors. Similarly, according to the ecological systems model (Bronfenbrenner & Morris, 2007), development takes place through reciprocal interactions between the individual and the persons, objects, and symbols in their immediate environment, and these relationships are impacted by the immediate and remote environment.

DEVELOPMENTAL CHANGES DURING ADOLESCENCE Adolescents go through rapid physical, cognitive, psychosocial, and emotional changes. The changes vary as a function of stage of development. Table 9.1 describes these changes within early, middle, and late adolescence.

Physical Development Adolescence is a phase of physical changes and growth spurts. Three dramatic changes occurring during puberty include an increase in height, an increase in weight, and sexual/reproductive development. The timing of onset, rate of change, and ultimate appearance vary widely across individuals. Variability in timing and rate of puberty are based on many factors, including genetics, nutrition, medical conditions, and racial and ethnic background, to name a few. 91

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TABLE 9.1 Developmental Stages During Adolescence  

Tasks

Early: 10–13 Yr

Mid: 14–16 Yr

Late: ≥17 Yr

1. Independence

Emotionally breaks from parents and prefers friends to family

Ambivalence about separation

Integration of independence issues

2. Body image

Adjustment to pubescent changes

“Trying on” different images to find real self

Integration of satisfying body image into personality

3. Sexual drives

Sexual curiosity; occasional masturbation

Sexual experimentation; individuals may be viewed as sex objects

Beginning of intimacy and caring

4. Relationships

Unisexual peer group; adult crushes

Begin heterosexual peer group; multiple adult role models

Individual relationships more important than peer group

5. Career plans

Vague and even unrealistic plans

Emerging plans may still be vague

Specific goals and specific steps to implement them

6. Conceptualization

Concrete thinking

Fascinated by new capacity for thinking

Ability to abstract

7. Value system

Decline in superego, testing of moral system of parents

Self-centered

Idealism; rigid concepts of right and wrong; other-oriented; asceticism





























From Felice, M. E. (1992). Adolescence. In D. M. Levine, W. B. Carey, & A. C. Crocker (Eds.), Developmental-behavioral pediatrics (2nd ed., p. 69). WB Saunders.

While children assigned male at birth (referred to subsequently as “boys”) and children assigned female at birth (referred to subsequently as “girls”) are similar in height and weight during early childhood, rapid changes occurring during adolescence alter the course for both girls and boys. Increases in height and growth spurts happen at different stages for girls and boys. For girls, the growth spurt begins approximately 2 years earlier than boys, starting, on average, at ages 9 to 10, lasting about 2 years. During this time, girls increase in height by about 3 inches per year. For boys, the growth spurt begins on average at ages 11 to 12 lasting about 2 years. During this time, boys increase in height by about 4 inches per year. During early adolescence, girls are as tall or taller than boys of the same age, but by the end of adolescence, boys are typically taller than are girls (Bordini & Rosenfield, 2011). Changes in weight, adipose tissue distribution, and muscle mass typically occur at approximately the same time as the gain in height. Weight, in general, almost doubles for all adolescents. Adolescent girls develop a greater amount of body fat than adolescent boys, with changes in adipose tissue distribution varying in adolescent girls and boys. In adolescent girls there is a redistribution of fat to hips and breasts, whereas in adolescent, boys there is less fat overall and increased lean muscle mass and strength. Skeletal features that undergo changes during adolescence include changes to the face and skull. Adolescent boys acquire thicker and heavier bones in their skull and brow prominence compared to girls. There is increased long bone length (relative to height) and increased bone density. Bone density affects weight and skeletal strength, laying the foundation for bone health through the rest of the individual’s life. Discussions with adolescents and their parents regarding bone health, diet, and physical activity are therefore especially important in increasing bone health and ultimately preventing osteoporosis later in life.

Pubertal and Hormonal Development Physical maturation and the development of secondary sexual characteristics during adolescence results in the individual evolving toward an adult appearance and in adolescents experiencing different culturally determined expectations for cognition, language, social skills, emotional regulation, interests, and activities. Sometime in late childhood, production of adrenal androgens increases before there are any physical signs of puberty. This increased production of adrenal androgens can be approximately contemporaneous with an increasing pulsatile secretion of gonadotropin-releasing hormone during sleep. Gonadotropin-releasing hormone secretion results in increasing levels of luteinizing hormone (LH) and to a lesser extent follicle-stimulating hormone (FSH). In females FSH stimulates follicle growth in the ovary and the production of aromatase. LH stimulates ovarian thecal cells to produce androgens; aromatase converts androgens to estrogens in the FSH-stimulated granulosa cells. Later in puberty, under separate control mechanisms, a mid–menstrual cycle surge of estradiol results in an elevation of LH to trigger ovulation (Joffe & Blythe, 2003). In males LH stimulates the Leydig cells in the testes to produce testosterone; later, FSH stimulates testicular Sertoli cells to support the development of sperm. Other hormones are also released during puberty. The pituitary secretes human growth hormone, regulated by growth hormone–releasing factor and somatostatin that are also from the hypothalamus. Growth hormone–releasing factor is released in a pulsatile fashion during sleep. Insulin-like growth factor I (IGF-I or somatomedin C) and IGF-II are produced by the liver and influence growth, particularly growth rate, as do thyroxine and the corticosteroids. Parathyroid hormone, 1,25-dihydroxyvitamin D, and calcitonin affect skeletal bone mineralization. The release, surge, and interaction of these hormones result in the physical changes observed during adolescence.

 

CHAPTER 9

In girls the first sign of puberty is usually the development of breast buds, which occurs between the ages of 8 and 10 years. The growth of pubic hair, further development of breasts, a height spurt, a weight spurt, and menarche then follow in a well-described pattern (Tanner, 1962). Menarche signifies the end of pubertal development in girls. Girls typically experience puberty about 2 years earlier than boys. In boys the first sign of puberty is usually darkening of the scrotal skin, enlargement of the testes, and lengthening of the penis, all of which occur between the ages of 10 and 12 years. The proliferation of pubic hair, additional enlargement of the genitalia, and a height spurt follow over the next 2 to 6 years (Tanner, 1962). Other pubertal changes, such as acne, axillary hair, deepening of the voice, and the growth of chest hair in boys, also are characteristic, but vary from one individual to another, depending on genetic and cultural factors. Most of the changes of puberty occur in early adolescence (see Table 9.1), but a subset of young men continues to grow taller into their early 20 s.  

Motor Skill Development and Coordination As adolescents grow rapidly, they may become awkward or clumsy as they get used to changing length of limbs and bodies. Strength increases in most children, though generally more so in boys than in girls. Strength and agility are promoted by physical exercise, participation in sports, and ongoing practice. During rapid growth periods, the growth plates (or physes) and large tendon insertion sites of adolescent bones cannot handle as much force and stress as mature adult bones, making adolescents more prone to overuse injuries and fractures, especially in organized sports.

Brain Development Significant changes occur in brain structure and function during adolescence and into young adulthood. Gray matter areas of the brain, which are involved in motor and sensory functions and in processing emotions and rewards (i.e., the amygdala and limbic systems), have already matured during childhood. However, areas involved in higher level processing, such as organization, planning, self-monitoring, selfcontrol, and working memory, continue to mature during this developmental stage. These higher level skills are collectively called executive functions. The prefrontal cortex is one of the last areas of the brain to develop and generally does not fully mature until early adulthood (approximately age 25) (Casey, Giedd, & Thomas, 2000; Casey, Jones, & Hare, 2008). During adolescence, gray matter volume decreases, though gray matter density increases. Following the synaptic overproduction and increased neuronal connections of childhood, the adolescent and young adult brain selectively “prunes” itself. The remaining neuronal synapses become more efficient and adept at transmitting information between neurons. The process of pruning occurs in a back-to-front direction with the frontal lobes pruned last (Gogtay et al., 2004). Along with the maturation of the gray matter regions, white matter, defined as the fiber bundles or tracts that connect brain regions, is also evolving. Advanced magnetic resonance imaging studies show that diffusion in white matter becomes more

Adolescence

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directional during adolescence, a change indicative in part of increased myelination. Increased myelination increases the efficiency and speed of neuronal connections and communication. The regions in which this white matter changes take place include the prefrontal cortex, again likely leading to greater speed and efficiency in decision making, selective attention, and information processing. The process of myelination also occurs in a back-to-front manner with the frontal lobes becoming myelinated later (Gogtay et al., 2004). Dopamine receptors, which are connected to the limbic system of the brain responsible for emotions, rewards, and punishment, increase during adolescence. These processes have been shown to continue through age 25, with large individual differences in rate and amount of brain growth over time. This late maturation of dopamine receptors may lead adolescents to act more impulsively, choose more risky behaviors, and make decisions influenced by the emotional and reward centers of the brain compared to emerging adults (Casey et al., 2008). This development would suggest that during early adolescence rational thinking may be overridden by emotions or the desire for rewards.

Cognitive Development Abstract Thinking Adolescents become increasingly capable of thinking abstractly as opposed to strictly thinking concretely (see Chapter 3). This development allows adolescents to think logically not only about concrete objects and issues in the present but also about abstract, future, or hypothetical issues. Advances in cognitive skills also allow adolescents to consider multiple aspects of their actions and decisions at one time, assess potential positive and negative consequences of each decision, and plan with consideration of contingencies. Adolescents also become increasingly capable of metacognition, or the ability to “think about thoughts.” Metacognition allows adolescents to merge knowledge from past experiences with reflective thinking about current challenges of a new task or problem, review and reflect on possible strategies, and eventually solve or resolve challenges. Metacognitive processes are thought to be largely responsible for helping adolescents successfully counterbalance an array of conflicting thoughts and emotions “new” to their experience, by virtue of rapid biologic growth and dramatically expanding life experiences. Adolescents’ abilities to process information rationally and to reason through a decision emerge as young as age 10 and approach adult levels by age 16 (Steinberg, Graham, O’Brien, Woolard, Cauffman, & Banich, 2009). Their ability to apply logical thinking is facilitated by formal education, which in the later grades and ages promotes logical, scientific, and creative thinking. Language Development While most adolescents have learned the basics of language before adolescence, the use of both the written and spoken word becomes more sophisticated and refined during adolescence than during middle childhood, corresponding with their emerging cognitive advances. Language during this period involves long sentences, diverse vocabulary, figurative

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language, sarcasm, and persuasion. Formal education also promotes these developmental changes, whereby adolescents are often required to deliver expository speeches or to debate in school. Social language skills also mature. Adolescents learn and appreciate the communicative needs of individuals and audiences and thereby become increasingly able to adjust their language accordingly.

American. She may speak only Spanish at home and English in school. Mexican holidays and celebrations may be celebrated with her family while she may participate in American holidays such as the Fourth of July with her friends. Tension may develop for the teen and her family as she tries to navigate both worlds. Adolescents’ identity typically solidifies as the individual approaches early adulthood.

Emotional Development and Intensity

Autonomy Development Adolescents’ physical maturity allows them to look like adults. At this stage of their psychosocial and emotional development, society accepts that adolescents can take on increasing responsibility. These trends translate into adolescents’ desire to participate in, and eventually dictate, their health and social decisions. Adolescents look for opportunities to make decisions. Indeed, experiences with such decisions-making, serve as practice for making decisions later in life.

As adolescents are developing physically, cognitively, and socially, they are also developing emotionally. Indeed, because the human brain develops from the posterior to anterior, the parts of the brain most responsible for generating emotions develop early. During adolescence, individuals make decisions using emotional reasoning, especially the early adolescent years. Further, adolescents tend to have more intense emotions, and unpredictable and extreme mood swings, than children of younger ages. Adolescence is a time known for mood swings and emotionality, and during this time it is especially important for clinicians, parents/caregivers, teachers, and others involved in the life of teens to take the time to calmly listen to the needs and emotions of adolescents.

Self-Regulation Accompanying other aspects of development is the development of self-regulation, or the ability to regulate one’s emotions and behaviors. Adolescents’ psychosocial maturity, such as the ability to consider long-term consequences and rewards, to resist impulsivity, and to resist peer pressure, contribute to the development of self-regulation. These abilities are served by the anterior regions of the brain that develop in adolescence and emerging adulthood, with the ultimate milestone of developing increased independence and decisionmaking abilities.

Psychosocial Development Personal Identity Development The development of a sense of self is one of the significant tasks of adolescence. Personal identity development occurs throughout the lifespan. It is during adolescence that important questions predominate an individual’s thinking: “Who am I?” “What will I become in life?” “What do I want to be when I grow up?” and “Am I doing a good job?” Many characteristics contribute to the adolescent’s self of sense, including gender, race/ethnicity, culture, class, political and religious views. These facets are influenced by family, friends, schools, and society. Adolescents develop their identity in a social context, following the biopsychosocial model. They try to understand how they fit into their world, comparing themselves to others around them, and deciding to which social group they want to belong. Adolescents are also developing their ethnic, religious, and gender identities at this time, again deciding with which group of people they wish to affiliate. Adolescents may show multiple facets of their personal identity. A 16-year-old whose parents were born in Mexico and is an American citizen may self-identify as a Mexican

Perspective Taking Perspective taking is the ability to recognize how the thoughts and actions of one person can influence those of another, and to imagine how others might see them. This domain pulls together the advances in cognitive and social development. Social perspective taking also involves the ability to recognize that other people may have different points of view, or a different knowledge set from one’s own. The ability to take others’ perspectives continues to develop in early adolescence, stabilizing and becoming similar to adults’ abilities by about age 16. Susceptibility to peer pressure generally decreases by age 16. Impulsivity, including making quick and reflexive decisions, steadily declines starting at around age 10. Future perspective taking, including the ability to think further into the future and consider possible positive and negative outcomes associated with choices, is generally mature by age 16, though experience and education continue to refine these skills well past age 16 (Steinberg et al., 2009). Peer Relationships Developing mutually satisfying peer relationships is an important developmental task in adolescence (see Chapter 17). Friendship formation and survival are about acceptance and trust. Friendships form around groups of youth with similar interests, lifestyles, and cultural backgrounds. Often, friendships are same sex during early adolescence and expand to include all genders by high school. As adolescents seek autonomy from parents, socializing with their peer groups becomes very important. Positive peer relationships contribute to adolescents’ wellbeing, as adolescents get to test new roles (e.g., being a good listener, the comedian in the group, the outspoken one) in a safe space with peers. As adolescents get to test new roles, however, problems may arise. Bullying and other forms of negative behaviors also increase during adolescence. Bullying behavior needs to be addressed by adults immediately to ensure safety for the youth being bullied but also for the youth who is doing the bullying, allowing the adolescent to recognize that this form of behavior is unacceptable and inappropriate.

 

CHAPTER 9

Family Relationships Parents are typically important influences in the youth’s identity development for promoting and supporting individuation, the process of achieving a sense of individuality distinct from the identity of others. Individuation in adolescents may be displayed through separation from the family and through self-assertion, especially in cultures that value independence over interdependence. These changes lead to adjustments to family relationships during adolescence (see Chapter 12). This period can be stressful between the parent/caregiver and youth, as adolescents enact their need for autonomy and individuation. Youth often test limits with their parents/caregivers, which is a normal part of adolescence as they navigate the world into adulthood. Frequently, youth “push” parents away while simultaneously wanting to stay close to them. Parents/caregivers do well to set safe boundaries and consistent guidelines so that youth feel a sense of stability and are able to approach the dramatic changes in their lives without becoming overwhelmed. Even though it may not seem like it for many parents, youth need them for love, support, and security. Providing a home environment that fosters connectedness, where there is open, respectful communication among all parties promotes healthy identity development. In health care clinicians may play a critical role assisting both parents and youth to communicate with each other, educating them on what is expected during adolescent development and normalizing these stages of identity development.

Gender Gender refers to the attitudes, feelings, and behaviors that a culture associates with an individual’s biologic sex (see Chapter 75). Gender identity refers to an individual’s deeply felt feelings of being a boy, a man, or a male; a girl, a woman, or a female; or an alternative gender (e.g., two-spirit, genderqueer, gender nonconforming, nonbinary). For alternative genders, the external presentation is independent from sexual orientation and sex assigned at birth. As health care clinicians it is important to ask adolescent patients their gender pronouns and then to make sure and use their stated pronouns. Doing so fosters an inclusive environment and affirms, not assumes, their gender identity. It also supports their mental health and wellbeing by raising their self-esteem and lowering their risk for depression or other mental health and behavioral issues.

Sexual Orientation Sexual orientation develops during the preteen and teenage years and refers to whom an individual is attracted and with whom one wants to have an intimate or sexual relationship (see Chapters 73 and 74). A youth may identify as straight, lesbian, gay, bisexual, pansexual, or asexual. Straight refers to being attracted to members of the other sex; a lesbian is defined as a woman attracted to other women; the word gay generally refers to men attracted to men, but also some lesbians use the term. Bisexual people are attracted to both men and women. Pansexuals are attracted toward people

Adolescence

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regardless of their sex or gender identity. Asexual people have romantic but no sexual attraction to others. Sexuality is fluid during adolescence, and it may be common for adolescents to change their sexual orientation as they explore their identities (Stewart, Spivey, Widman, Choukas-Bradley, & Prinstein, 2019). Adolescents often worry about how their family members and friends would react if they were to disclose their sexual orientation or gender. Many adolescents feel happier and less stressed after they share their sexual orientation with their family, especially if their family is supportive. Others may not feel safe coming out because of fears of rejection, homophobia, bullying, and other threats. Some adolescents do not disclose their sexuality or gender identity until adulthood. For parents, the news that their child is not straight may be unexpected. Some parents may feel confusion, shame, anger, or sadness, whereas others may feel worry and concern. Other parents immediately are accepting and supportive. Parents in the current era are more accepting of their child’s sexual orientation than in the past; nonetheless, they often need time to adjust to the news. Unfortunately for some adolescents, they are rejected by family members who ask them to leave the home. In clinical care it is thus important to provide a safe and confidential space when meeting with adolescent patients to enable a full and honest discussion about gender and sexuality. An adolescent may want to discuss the coming out process, sexual and/or reproductive health, gender-affirming healthcare and/or ask for advice on how to talk to parents. Clinicians often have opportunities to educate parents about sexual orientation and how acceptance promotes an adolescent’s health and wellbeing. The clinician may be able to bring family members to a place of understanding.

Race/Ethnic Identity Race is a social construct and refers to the characteristics and features used to classify a group of people. The meaning of race is not fixed and has changed over time. Ethnicity refers to the membership of a particular cultural, national, or racial group that has a shared culture, language, place of origin, and religion. For example, among two Black people, one may be Dominican and another may be American. Ethnic identity, in particular, is shaped by family socialization. Ethnic identity is also influenced by media, the arts, literature, and global affairs. Supporting the health and wellbeing of adolescents should include discussion of and understanding about racial and ethnic identity. The demographics of the United States are changing: The US Census Bureau (2018) predicts that less than half of children in the United States are projected to be non-Hispanic White (49.8% of the projected 74 million children age 24 months of age) and history of multiple adversities at the time of adoption have been associated with an increased risk of both internalizing and externalizing symptoms (Fisher, 2015). Analysis of data

 

CHAPTER 14 Foster Care and Adoption: Implications for Developmental and Behavioral Pediatrics

provided for the National Longitudinal Study of Adolescent Health suggests that early maltreatment and peer-family relations were associated with antisocial behavior, but adoption status alone contributed little or no additional predictive power (Grotevant et al., 2006). Although, overall, epidemiologic studies suggest that adoptees are at increased risk of behavioral and mental health concerns, type of adoption may also impact the relative degree of risk. One metaanalysis (Juffer & van IJzendoorn, 2005) considered behavior problems and mental health referrals for children with a history of international adoption or domestic adoption in contrast to nonadopted controls in a range of developed countries (Europe, North America, Asia) and reviewed 64 articles regarding behavioral problems and 34 articles about mental health referrals published between 1961 and 2004. The authors drew four main conclusions. First, adoptees (n = 25,281 cases; 80,260 controls) were more likely to present with behavioral problems than nonadoptees, although effect sizes were small (d, 0.16–0.24). Second, adoptees were overrepresented in mental health settings. Third, international adoptees demonstrated more behavioral concerns than nonadopted controls, but effect sizes were small (d, 0.07–0.11). Fourth, international adoptees showed fewer total externalizing and internalizing behavior problems than domestic adoptees and were less often referred to mental health services (international adoptees d, 0.37; domestic adoptees d, 0.81). One systematic review suggested that at least a subpopulation of children with a history of international adoption are at greater risk of long-term developmental, behavioral, and emotional concerns when compared to the general population (Cederblad et al., 1999). This comprehensive review, commissioned by the Swedish government, suggested that children with a history of international adoption have a two to three times greater chance of later psychiatric problems and relationship difficulties when compared with their nonadopted peers. In general, the older a child was at the time of adoption, the greater the risk of later being identified as having psychiatric or social adjustment concerns. Although several studies do not support a significantly greater risk for major developmental and psychiatric concerns after international adoption, sampling bias and validity of outcome measurements may have influenced the conclusions reached in some studies. Cederblad concluded that a small proportion of the adoptees may show severe symptoms and may be overrepresented in clinical samples, whereas many children who are healthy and develop well are only documented in larger cohort studies. Perception of mental health concerns can vary depending on the reporter. For example, one study examining the mental health of US adolescents adopted both domestically and internationally under 2 years of age (Keyes et al., 2008) looked at parent, teacher, and child self-reports and used a structured diagnostic interview (Diagnostic Interview for Children and Adolescents [DICA]) to compare adolescents’ profiles with Diagnostic and Statisical Manual of Mental Disorders, fourth edition (DSM-IV) diagnostic criteria for behavioral and emotional concerns. Despite some limitations

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in their approach, the researchers found that most individuals adopted as infants did not meet diagnostic criteria for any disorder, but a subset of adoptees appeared to be at risk for externalizing disorders (effect size 0.18–0.46.) For example, the odds of meeting criteria for oppositional defiant disorder (ODD) or ADHD were approximately twice as high in this study’s adoptees compared with nonadoptees. In contrast, the prevalence of conduct disorder, major depressive disorder, and separation anxiety disorder were not associated with adoption status. Interestingly, even though children adopted internationally joined their families at significantly later ages than domestic adoptees, they were at statistically less risk of externalizing concerns compared to domestic adoptees after controlling for other variables, including family socioeconomic status and gender. It is also noteworthy that teachers rated international adoptees as more anxious than nonadoptees, although parents and children did not report anxiety symptoms. Overall, adolescents with a history of adoption (whether domestic or international) in this study were significantly more likely to have had contact with a mental health professional (approximately twice as likely) compared with nonadopted peers. As a typical part of the identity development process, adolescents naturally are expected to consider who they are in the world, including how they came to be part of an adoptive family and making sense of their adoptive history, which may impact the degree of testing and acting out behaviors in adolescence. Some investigators have described that children who have been residing with their family for more than 12 years demonstrated fewer externalizing behaviors. For transracial adoptees, it has been hypothesized that given obvious differences in physical appearance when compared with their adoptive parent(s), greater awareness of their adoptive status may contribute to increased behavioral concerns prior to adolescence (Juffer, 2006). In addition to a greater awareness of their adoptive status, transracially adopted youth face different hurdles in their processes of identity development. Successfully navigating these hurdles, or struggling to cope with them, may play an important role in their need for more mental health support. Furthermore, transracially adopted youth are much more likely to be exposed to racism and discrimination within and outside of multiracial families. Santana et al. (2007) found that after adjusting for age, sex, and socioeconomic status, adolescents who reported ever perceiving discrimination in their lives were 97% more likely to also report symptoms of major depression and 69% more likely to report feeling unhappy, as compared to individuals who did not report discrimination. Again, it is critical to note that the nature of international adoption and the acceptability of transracial adoption have changed dramatically over the past several decades and therefore the generalizability of existing studies is limited. Fewer studies have examined the complex relationship between birth family history, adoptive family history, and substance abuse. One study suggests that a birth parent history of substance use approximately doubles the odds of an adopted person’s history of substance use compared to baseline population risk. Interestingly, birth sibling history of drug use and

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SECTION 3  Social and Environmental Contexts of Children

adoptive sibling history of drug use were nearly identical in impacting an adoptee’s risk of substance use (odds ratio [OR] 1.84 for birth siblings; OR 1.95 for adoptive siblings) (Kendler et al., 2012). In other words both birth and adoptive family factors significantly impact one’s use of substances.

Impact of Preadoptive Deprivations: Lessons Learned From Studies of Previously Institutionalized Children Studies of previously institutionalized children provide unique insight into resilience and vulnerability among children. Both resilience and vulnerability to severe deprivation have been described by researchers examining the postadoptive trajectory of internationally adopted children with a history of institutionalization. Deprivation may occur on a range of levels and to various degrees and may have an impact on a child’s health and wellbeing on three different planes: (1) basic nutritional, hygiene, and medical needs; (2) stimulation and opportunity to engage with the environment in a way that supports motor, cognitive, language, and social development; and (3) stable interpersonal relationships allowing children to develop an attachment relationship with a consistent caregiver (Nelson et al., 2011). Importantly, although these levels of deprivation may be theoretically described and separated, they are not independent factors in a child’s real-life experience. However, an appreciation of these different planes of support or deprivation informs our understanding of factors that may impact children residing with either families or in institutions. Some aspects of a child’s preadoptive history are easier to ascertain than others. For example, while access to nutrition can be crudely observed by examining a child’s growth chart, access to a stable interpersonal relationship is much harder to quantify. Although it is likely that access to adequate nutrition increases the likelihood of having interpersonal relationships with those providing the nutrition, the degree of deprivation suffered before adoption is essentially impossible to determine for any child and may be significant. Although all families and child welfare institutions are unique, the overwhelmingly negative long-term impact of institutional life on a child’s growth and development has been well described for more than a century in many different countries. Fortunately, children transitioning from living in orphanages to living with foster or adoptive families have demonstrated an immense human capacity for developmental plasticity and recovery of many functions. Three well-designed longitudinal epidemiologic studies examining children adopted from Romania to the United Kingdom and to Canada (Canadian-Romanian study) or transitioning from institutional care to foster care in Romania shed insight on preadoptive experiences and postplacement resiliency. Taken together, these studies demonstrate significant cognitive, behavioral, and emotional improvement for previously institutionalized children throughout childhood and adolescence—albeit recovery is not always complete. In general, previously institutionalized children have been reported to have relatively higher rates of inattention, hyperactivity, difficulty

with emotional regulation, and elevated levels of anxiety as well as difficulties later in life with intimate social attachments, emotional regulation, and interpretation of facial expression (Zeanah et al., 2011). In general, most children are expected to demonstrate healthy attachments with their adoptive parents, although the classification of their attachment relationship with their adoptive parent is more likely to be insecure (Fox et al., 2017). Indiscriminate friendliness is common (more than two-thirds of previously institutionalized preschool children) and may persist for years following adoption (Fox et al., 2017). Despite an increased risk of longterm concerns on a population level, cognitive and emotional improvement following transition to adoptive families is still expected for the majority of children transitioning to a foster or adoptive family. Similarly, it is expected that children without a history of institutionalization, but with some degree of deprivation, may also experience some degree of postadoptive recovery of functioning. Delays in or variations from the normal progression of a child’s development prior to adoption have been attributed to multiple factors common for children residing in institutions or depriving environments, including but not limited to malnutrition, emotional neglect via lack of a consistent emotional connection with caretakers, and lack of developmentally stimulating opportunities or experiences. Additional factors such as prenatal exposure to alcohol, environmental exposures (including lead), and genetic or neurologic disorders may also cause or contribute to children’s developmental outcomes, although these factors may not be identified prior to adoption. In general, postadoptive improvements of children’s developmental skills and behaviors are routinely expected when children join their families even following a history of institutionalization. However, persistent developmental or behavioral concerns after years of residing with adoptive parents may represent innate disorders, irreversible consequences of early life experiences, or a combination. Certain factors, such as quality of care and length of institutionalization, are especially predictive of outcomes. Both historical and contemporary studies confirm a relationship between length of time and quality of care received while a child resides in an institution and that child’s long-term health and development following adoption. Length of time residing in an institution is positively correlated with a child’s risk of presenting with developmental, behavioral, and emotional concerns after international adoption (Bos et al., 2011; Rutter, 2012; Zeanah et al., 2011). In one study examining children with a history of residing in Romanian orphanages timing of placement with foster families correlated with improvements in cognitive, language, behavioral, emotional, and attachment outcomes and were most significant for children with the least time in an orphanage (Smyke et al., 2010; Zeanah & Humphreys, 2018). Longitudinal studies of children adopted from Romanian orphanages into adoptive families in the United Kingdom suggested no measurable differences between children adopted prior to 6 months of age and age-matched peers without a history of institutionalization. Other investigators have found that with less depriving

 

CHAPTER 14 Foster Care and Adoption: Implications for Developmental and Behavioral Pediatrics

environments, outcomes for children adopted at less than 12 or 24 months were indistinguishable from noninstitutionalized peers. Quality of care provided in an institution is also correlated with children’s postadoptive outcomes, as orphanages associated with improved child health and development outcomes typically provide children with adequate nutrition and health care, a lower child-to-caregiver ratio, a lower total number of caregivers over the life of the child, and caregivers who recognize and respond to the distress and vocalizations of children (Bos et al., 2011). Unfortunately, despite this welldocumented fact, most children residing in an institution do not experience preferred institutional conditions or highquality foster care (McCall et al., 2012). Although concerns with self-regulation have been widely described for previously institutionalized children (Juffer & van Ijzendoorn, 2005), there is a fair amount of variability with respect to outcomes described in different populations. Zeanah et al. (2011) have estimated that approximately 20% of previously institutionalized children (compared with ~6% of US children) will reach a clinical threshold for an anxiety disorder, while 19% of previously institutionalized children (compared with ~9% of US children) meet criteria for ADHD (Roskam et al., 2014). Internalizing concerns (such as anxiety or depression) have been described in some samples of previously institutionalized children (Casey et al., 2009), while others have not described an increase in such concerns for previously institutionalized children (Johnson et al., 2010). Some studies have suggested that internalizing symptoms (vs. externalizing symptoms) are much more likely to improve after joining a stable family (Bos et al., 2011; Zeanah et al., 2011), but follow-up into adolescence has not yet been described. Relative to children remaining in orphanage care, previously institutionalized children demonstrated dramatic improvements in developmental domains over time despite well-described growth and developmental delays at the time of joining families (Groark & McCall, 2011). Long-lasting developmental concerns for previously institutionalized children have specifically been described for children adopted after 6 months of age. Despite overall cognitive competence, specific vulnerabilities have been described for previously institutionalized children, including relative weaknesses with executive functioning, language, and memory (Fox et al., 2017). Mental health concerns remained for children transitioning out of foster care despite developmental and cognitive improvements. Even in preschool years, a substantial number of children with a history of institutionalization presented with diagnosable psychiatric disorders (53% of children ever institutionalized vs. 22% of children never institutionalized). However, relatively shortly after transitioning to foster care homes, children demonstrated greater attention to tasks and greater positive affect in comparison to their still institutionalized peers (Bos et al., 2011). Children transitioned to caring and committed foster families from institutions (at a mean age of 22 months) were comparable to never institutionalized peers with resolution of internalizing symptoms (anxiety, mood symptoms). The impact on improvement of internalizing symptoms was especially notable for girls. Unfortunately,

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a similar impact of foster care was not noted for externalizing behavioral symptoms for children of either gender, suggesting that these symptoms are less amenable to recovery by transitioning to new living circumstances (Bos et al., 2011).

Limitations and Current Knowledge Gaps Predicting future developmental, behavioral, and mental health outcomes for children with a history of foster care and/or adoption is challenging for a variety of reasons. Importantly, children may experience a wide range of life circumstances, including risk and resilience factors before joining their foster or adoptive families that may have an impact on their later health, development, and long-term potential and outcomes, including prenatal substance exposure and trauma (see Chapters 15, 37, and 56). As a result, outcomes for children with a history of foster care and/or adoption vary. Importantly, when considering possible long-term outcomes for children with a history of foster care and/or adoption, it is critical to acknowledge that the penultimate long-term outcomes relevant for any child are in fact how they function in adulthood, not the behaviors noted shortly or even several years after transition to a family. However, adult outcome studies considering experiences of foster care or adoption in childhood are limited. Published reports primarily reflect the experiences of populations of children who joined their families decades earlier than children currently being adopted, whose experiences are different. The landscape of foster care as well as that of domestic and international adoption, including preadoptive and postadoptive experiences and preparation of both children and families, has changed dramatically over the past several generations, most notably with an increase in open adoptions and changes in international adoption. As a result, even post–foster care and postadoption outcomes currently available and described for individuals in adulthood may not be entirely reflective of current preadoptive experiences and postadoptive experiences of children and adolescents with a contemporary history of foster care and/or adoption. Additionally, evidence about the outcomes of children with a history of foster care and/or adoption is typically based on population level outcomes, whereas individual outcomes are harder to predict for any given child. Ideally, studies of long-term outcomes following foster care or adoption of a child would consider child, family, and geographic specific variables as they may impact developmental, behavioral, and emotional outcomes for children from infancy through adulthood (see Tables 14.2 and 14.3). Relevant postadoptive outcomes may include those measurable in childhood (e.g., cognitive and learning abilities) and later functional outcomes (e.g., employment status, emotional health in adulthood) as well as considering issues that may impact identity development (e.g., impact of adoption and transracial adoption on identity development) well into adulthood. Unfortunately, to date no study has carefully examined preadoptive genetics and experiences, postadoptive experiences, and individual, family, or community variables impacting long-term developmental, academic, or emotional outcome in adults with a history of adoption.

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IDENTITY DEVELOPMENT CONSIDERATIONS POSTADOPTION Ethnic/Racial Identity Ethnic/racial identity (ERI) is important when considering transracial and transethnic foster care and adoption. ERI refers to the personal attitudes toward and feelings of belonging to a particular racial and/or ethnic group and affects development across the life span, including social-emotional wellbeing. Stronger ERI predicts higher levels of self-esteem and overall wellbeing into adulthood (Ghavami et al., 2011). Importantly, positive ERI development can provide a buffer to the well-documented, widespread deleterious effects of perceived discrimination (see Marks et al., 2015 for a systematic review). The development of one’s ethnic identity is a dynamic process that occurs through exploration and commitment. Parental support (Radina & Cooney, 2000) and family ethnic socialization (Umaña-Taylor & Fine, 2004) can facilitate ERI and are important roles for adoptive families. ERI can promote adjustment and buffer the negative social-emotional, physical health, academic, and wellbeing effects of discrimination (Castle et al., 2011; Marks et al., 2015). When considering other ways in which foster and adoptive parents can support ERI development, it is important to consider socialization, which is the main factor by which children and adolescents are exposed to, taught about, and internalize the skills, behavioral patterns, and values needed to function in the culture in which they are growing up (Maccoby, 2007). For adopted children, particularly with relation to ERI development, this includes socialization to their home culture. When interviewed as adults about their experiences in developing their identities in White adoptive families (Zhou et al., 2011), common themes arose among Korean adult adoptees regarding their adoptive families’ attempts at socialization. These themes may transfer to other groups and can inform guidance for families. • Limited exposure: Although their adoptive parents attempted to increase ethnic socialization to their home culture by taking them to Korean restaurants, enrolling them in cultural camps, and occasionally celebrating Korean holidays at home, adoptees reported that their exposure to Korean culture was infrequent and insufficient. In considering these findings, adoptive transracial and transethnic adoptive parents should seek out cultural socialization experiences for their children with regular frequency and across a wide range of modalities. Prospective adoptive parents should learn about their child’s culture of birth and examine socialization experiences for their children that may include more in-depth exposures to a child’s racial and ethnic background. • Language: Limited proficiency in the language of the participants’ home culture created a barrier to accessing cultural experiences, led to feelings of inauthenticity, and inhibited socialization experiences and ERI development. While individual family factors may differ, specifically, with a child’s desire to learn the language of the home



culture, exposure to and opportunities to learn that language are important for families to consider. • Colorblindness and racism: Adult adoptees in the sample reported that their families either adopted a colorblindness mentality (e.g., not acknowledging their adopted children as people of color and thus avoiding necessary conversations about race and discrimination) or one of open racism and biased attitudes toward other racial/ethnic groups and people of color, in an attempt to erase racial and ethnic differences in their adoptive families. Transracial/ethnic families should have regular open conversations about race, racism, and stereotypes that are relevant to their children of color. Such factors can promote family socialization and ERI. The phenotypical differences between transracially or transethnically adopted youth and their families may make adoption status more salient, much sooner than children who are not transracially or transethnically adopted. However, parents can use these differences, most likely to be noticed by younger children asking, “Why do I look different from mommy/daddy?”, to start early conversations about adoption, race, and identity, openly and honestly. Much of the research to date has focused on transethnic adoptions, with a strong focus on culture (e.g., Asian children adopted into White families), despite the growing number of transracially adopted children. Researchers have highlighted the complexity of racial socialization and ERI development faced by adopted children of color and their White families. While these factors share some overlap with transethnically adopted youth, racial socialization varies in unique ways from cultural and ethnic socialization and should be treated as a distinct process. Future research should examine different factors faced by adoptees who are of a different race than their adoptive families.

Adoption Identity Discussions Children with a history of adoption will incorporate this fact into their life story. For some children, this is just a fact of their history. But for others, especially if they have previously resided with their birth family or if they have ongoing contact with their birth parents and/or extended birth family members, questions may arise more frequently. One important consideration for families is to realize that children’s own adoption story is theirs to share, not the family’s. Understanding the difference between secrecy (where a child is not aware of the history) and privacy (sharing information as needed, such as in medical settings and in response to a child’s questions) can be helpful. For example, multiethnic families may be asked questions about adoption by strangers and can choose to respond that they are not interested in discussing the topic. Caring family members, friends, and strangers may ask questions out of curiosity, but that does not mean each question needs to be answered. Many events in the life of a child, adolescent, or adult may trigger questions about the adoptive history. School assignments discussing a family tree and genetics discussions (e.g., eye color) may highlight one’s differences from the adoptive

 

CHAPTER 14 Foster Care and Adoption: Implications for Developmental and Behavioral Pediatrics

family. Life events such as considering marriage and having a child may also raise questions about one’s own birth history. Siblings joining the family (whether by birth or adoption) and adoption of a pet may also raise new questions. Adoptive parents can support their children by being open to answering questions and preparing for some routinely expected questions. Given the particular importance of identity development in multiethnic youth, these questions may happen earlier, or with more frequency, in response to life events, questions from outside observers, or in response to incidents of racism or discrimination. Some individuals with a history of adoption who do not have an open adoption are interested in searching to learn as much as possible about their birth family, which has become ever easier with the evolution of technology and social media. Some people also reach out to meet their birth family, which may be declined or accepted, and they may even meet with their birth family. Many adopted people find it helpful to work with a therapist experienced with search and reunification processes to support them along the way.

PRACTICE AND POLICY IMPLICATIONS Clinical research provides guidance regarding practice and policy for children raised without permanent parents, including those with a history of institutionalization and/or foster care. Infants and young children reared in most child welfare institutions experience delays in their physical, neurobiologic, cognitive, and social-emotional development (McCall et al., 2012). For children who transition to family environments (i.e., adoptive or foster families), immediate and substantial catchup is observed in all domains. However, delays in all developmental domains can persist at higher-than-expected rates even after transitioning to families. As a result, children should be referred for early intervention, school-based supports, and mental health services if questions arise. A range of longitudinal studies suggest that transition to a caring and supportive family, whether adoptive or foster, promotes improved developmental progress for children who have experienced abuse and neglect. Increased time in a challenging environment and age at placement with a foster or adoptive family are important predictors of outcomes. As a result, child welfare policies need to reduce the amount of time any child spends in a neglectful and/or abusive environment.

CONCLUSION Foster care placement and/or adoption is an important albeit single aspect of an individual’s story. Children presenting with developmental and behavioral challenges who also have a history of foster care and/or adoption like James in the opening vignette, are expected to make progress after transitioning to a new family. However, early trauma, prenatal substance exposure, and other experiences prior to transitioning to a family may contribute to potential developmental and behavioral challenges that must be addressed in the broader context of the individual’s unique traits, family, community, and society. Clinicians

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can play an important role in promoting optimal outcomes for children and their families through preadoption planning and postadoption support. Ultimately, practitioners and policies must work to ensure all children have access to supportive and nurturing caregivers, but professionals should appreciate that even the most healthy environment and developmental supports may not be able to remediate some children’s challenges prior to transitioning to a foster or adoptive setting. Early identification and treatment of potential learning and regulatory difficulties as well as supporting healthy adoptive and racial/ethnic identity are important in supporting all children with a history of foster care and/or adoption.

REFERENCES Bos, K., Zeanah, C., Fox, N., Drury, S., McLaughlin, K., & Nelson, C. (2011, Jan/Feb). Psychiatric outcomes in young children with a history of institutionalization. Harvard Review of Psychiatry, 15–24. Casey, B. J., Glatt, C. E., Tottenham, N., Soliman, F., Bath, K., Amso, D., Altemus, M., Pattwell, S., Jones, R., Levita, L., McEwen, B., Magariños, A. M., Gunnar, M., Thomas, K. M., Mezey, J., Clark, A. G., Hempsted, B. L., & Lee, F. S. (2009). Brain-derived neurotrophic factor as a model system for examining gene by environment interactions across development. Neuroscience, 164, 108–120. https://doi.org/10.1016/j.neuroscience.2009.03.081. Castle, H., Knight, E., & Watters, C. (2011). Ethnic identity as a protective factor for looked after and adopted children from ethnic minority groups: A critical review of the literature. Adoption Quarterly, 14(4), 305–325. Cerderblad, M., Höök, B., Irhammar, M, & Mercke, A. (1999). Mental health in international adoptees as teenagers and young adults. An epidemiological study. Journal of Child Psychology and Psychiatry, 1239–1248. Child Welfare Information Gateway. (2020). Foster care statistics 2018. US Department of Health and Human Services, Administration for Children and Families, Children’s Bureau. https://www.childwelfare.gov/pubPDFs/foster.pdf. Fisher. P. A. (2015). Review: Adoption, fostering, and the needs of looked-after and adopted children. Child and Adolescent Mental Health, 20(1), 5012. https://doi.org/10.1111/camh.12084. Fox, N. A., Nelson, C. A., & Zeanah, C. H. (2017). The effects of psychosocial deprivation on attachment: Lessons from the Bucharest Early Intervention Project. Psychodynamic Psychiatry, 45(4), 441–450. https://doi.org/10.1521/pdps.2017.45.4.441. Ghavami, N., Fingerhut, A., Peplau, L. A., Grant, S. K., & Wittig, M. A. (2011). Testing a model of minority identity achievement, identity affirmation, and psychological well-being among ethnic minority and sexual minority individuals. Cultural Diversity & Ethnic Minority Psychology, 17, 79–88. https://doi.org/10.1037/ a0022532. Groark, C. J., & McCall, R. B. (2011). Implementing changes in institutions to improve young children’s development. Infant Mental Health Journal, 32(5), 509–525. https://doi.org/10.1002/ imhj.20310. Grotevant, H., van Dulmen, M., Dunbar, N., Nelson-Christinedaugter J., Christensen, M., Fan, X., & Miller, B. C. (2006). Antisocial behavior of adoptees and nonadoptees: Prediction from early history and adolescent relationships. Journal of Research on Adolescence, 16, 105–131. Haugaard. J. J. (1998). Is adoption a risk factor for the development of adjustment problems? Clinical Psychology Review, 18(1), 47–69.

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Hellerstedt, W. L., Madsen, N. J., Gunnar, M. R., Grotevant, H. D., Lee, R. M., & Johnson, D. E. (2008). The International Adoption Project: Population-based surveillance of Minnesota parents who adopted children internationally. Maternal and Child Health Journal, 12, 162–171. Johnson, D. E., Guthrie, D., & Smyke, A. T., (2010). Growth and associations between auxology, caregiving environment, and cognition in socially deprived Romanian children randomized to foster vs ongoing institutional care. Archives of Pediatrics & Adolescent Medicine, 164, 507–516. Juffer, F. (2006). Children’s awareness of adoption and their problem behavior in families with 7-year old internationally adopted children. Adoption Quarterly, 9(2–3), 1–22. https://doi. org/10.1300/J145v09n02_01. Juffer, F., & van Ijzendoorn, M. H. (2005). Behavior problems and mental health referrals of international adoptees: A metaanalysis. JAMA, 293(20), 2501–2515. Kendler, K. S., Sundquist, K., Ohlsson, H., Palmér, K., Maes, H., Winkleby, M. A., & Sundquist, J. (2012). Genetic and familial environmental influences on the risk for drug abuse: A national Swedish adoption study. Archives of General Psychiatry, 69(7), 690–697. https://doi.org/10.1001/archgenpsychiatry.2011.2112. Keyes, M., Sharma, A., Elkins, I. J., Iacono, W. G., & McGue, M. (2008). The mental health of US adolescents adopted in infancy. Archive of Pediatrics & Adolescent Medicine, 162(5), 419–425. Lehto, K., Hägg, S., Lu, D., Karlsson, R., Pedersen, N., & Mosing, M. (2020). Childhood adoption and mental health in adulthood: The role of gene-environment correlations and interactions in the UK biobank. Biological Psychiatry, 87(8), 708–716. Maccoby, E. E. (2007). Historical overview of socialization research and theory. In J. E. Grusec & P. D. Hastings (Eds.), Handbook of socialization: Theory and research. Guliford Press. Marks, A. K., Ejesi, K., McCullough, M. B., & Garcia Coll, C. (2015). The development and implications of racism and discrimination. In R. M. Lerner & M. E. Lamb (Eds.), Handbook of child psychology and developmental science, socioemotional processes (7th ed.). John Wiley & Sons. Mason, P. W., Johnson, D. E., & Prock, L. A. (2014). Adoption medicine: Caring for children and families. American Academy of Pediatrics Council on Foster Care. Adoption and kinship care. American Academy of Pediatrics. McCall, R., van IJzendoorn, M., Juffer, F., Groark, C., & Groza, V. (2012). Children without permanent parents: Research, practice and policy. Wiley-Blackwell. Nelson, C. A., III, Bos, K., Gunnar, M. R., & Sonuga-Barke, E. J. (2011). The neurobiological toll of early human deprivation. Monographs of the Society for Research in Child Development, 76(4), 127–146. https://doi.org/10.1111 /j.1540-5834.2011.00630. Radina, E., & Cooney, T. (2000). Relationship quality between multiracial adolescents and their biological parents. American Journal of Orthopsychiatry, 70, 445–454.

Roskam, I., Stievenart, M., Tessier, R., Muntean, A., Escobar, M. J., Santelices, M. P., Juffer, F., Van Ijzendoorn, M. H., & Pierrehumbert, B. (2014). Another way of thinking about ADHD: The predictive role of early attachment deprivation in adolescents’ level of symptoms. Social Psychiatry and Psychiatric Epidemiology, 49(1), 133–144. https://doi.org/10.1007/s00127-013-0685-z. Rutter. M. (2012). Resilience as a dynamic concept. Development and Psychopathology, 24, 335–344. https://doi.org/10.1017/ S0954579412000028. Santana, V., Almeida-Filho, N., Roberts, R., & Cooper, S. P. (2007). Skin color, perception of racism, and depression among adolescents in Brazil. Child and Adolescent Mental Health, 12, 125–131. https://doi.org/10.1111/j.1475-3588.2007.00447.x. Smyke, A. T., Zeanah, C. H., Fox, N. A., Nelson, C. A., & Guthrie, D. (2010). Placement in foster care enhances quality of attachment among young institutionalized children. Child Development, 81, 212–223. https://doi.org/10.1111/j.1467-8624.2009.01390.x. Teyhan, A., Wijedasa, D., & Macleaod, J. (2018). Adult psychosocial outcomes of men and women who were looked-after or adopted as children: Prospective observational study. BMJ Open, 8, 3019095. https://doi.org/10.1136/bmjopen-2017-019095. Turney, K., & Wildeman, C. (2016). Mental and physical health of children in foster care. Pediatrics, 138(5), e20161118. Umaña-Taylor, A. J., & Fine, M. A. (2004). Examining ethnic identity among Mexican-origin adolescents living in the United States. Hispanic Journal of Behavioral Sciences, 26, 36–59. https://doi.org/10.1177/0739986303262143. van Ijzendoorn, M. H., Juffer, F., & Klein Poelhuis, C. W. (2005). Adoption and cognitive development: A meta-analytic comparison of adopted and non-adopted children’s IQ and school performance. Psychological Bulletin, 131, 301–316. Wildeman, C., & Emanuel, N. (2014). Cumulative risks of foster care placement by age 18 for US children, 2000–2011. PLoS One, 9(3), e92785. https://doi.org/10.1371/journal.pone.0092785. eCollection 2014. Zeanah, C. H., & Humphreys, K. L. (2018). Child abuse and neglect. Journal of the American Academy of Child and Adolescent Psychiatry, 57(9), 637–644. https://doi.org/10.1016/j. jaac.2018.06.007. Zeanah, C. H., Gunnar, M. R., McCall, R. B., Kreppner, J. M., & Fox, N. A. (2011). Sensitive periods (VI). Monographs of the Society for Research in Child Development, 76, 147–162. Zhou, X., Kim, J., Lee, H., & Lee, R. M. (2011). Korean adoptees as parents: Intergenerationality of ethnic, racial, and adoption socialization. Family Relations, 70(2), 637–632. https://doi. org/10.1111/fare.12439.

15 Trauma, Resilience, and Child Development Marsheena Murray and Robert D. Keder

For additional material related to the content of this chapter, please see Chapters 22 and 115.

VIGNETTE 1 Krystal is an 8-year-old girl with an extensive trauma history. Local Child Protective Services (CPS) first removed her from her mother’s home at the age of 2 years for neglect and parental substance abuse. After 8 months she was reunified with her mother, who was engaged to her current boyfriend. Krystal remained in the care of her mother from age 3 to 8 years and then was removed again due to reports of sexual abuse by her stepbrother and witnessing domestic violence between her mother and stepfather. Once again in CPS custody, Krystal also reported a history of continued parental substance abuse and neglect. Krystal presents to your outpatient clinic at age 8 years, during this second placement in foster care. Krystal was referred for an assessment due to academic problems, severe inattention, poor focus, hyperactivity, and at times aggressive behaviors. She dislikes school and has past diagnoses of oppositional defiant disorder and bipolar disorder. Her treatments have focused on these diagnoses but have been relatively unsuccessful. Her CPS worker asks for an assessment and treatment recommendations.

VIGNETTE 2 Miguel is an 8-year-old boy with an extensive trauma history. He arrived in the southwestern United States at age 2 years as a refugee from a country in Central America. He and his older sister were separated from their mother at the border and later placed in the care of their maternal aunt, who lives in a New England state and holds a green card. He endured years of food insecurity and was noted to have several developmental delays when he arrived at his aunt’s care. Early Intervention (IDEA Part C) services were started. Miguel qualified for special education services on his third birthday, but services were rescinded on his sixth birthday due to his progress. His mother and father were later able to join him at age 6 years and live with him, his aunt, and his aunt’s partner. A year later, his mother died of complications of late diagnosed ovarian cancer, and his father was incarcerated and deported for involvement in drug trafficking. He has been working with a school social worker for support since then. Now at age 8, Miguel is an honor roll student and loves his teachers and friends at school and is very close with his aunt. He was always an easygoing child but started experiencing anxiety since his mother passed away and he was separated from his father. He has maintained his grades, but his weight has increased and he is now overweight for his age. Additionally, his uncle developed problematic drinking behaviors, and his aunt (continued legal guardian) is experiencing domestic violence. They arrive for his routine pediatric well-care visit, and his anxiety and the domestic violence are flagged on clinical screening tools. You are considering your next steps in management as you page your clinic social worker to join you during the visit.

FRAMEWORKS: TRAUMA, TOXIC STRESS, AND RESILIENCE Trauma As Krystal’s story illustrates, trauma can have a large impact on developing children. Likewise, Miguel’s story illustrates several experiences of trauma but different outcomes. In this chapter we examine child development in the context of trauma, adversity, and resilience.

Definition of Trauma The American Psychological Association defines trauma as “an emotional response to a terrible event like an accident, rape

or natural disaster.” The Substance Abuse and Mental Health Services Administration (SAMHSA) focuses on three Es of trauma: events, experiences of events, and effect. Specifically, the idea is that individual trauma is the result of an event that is experienced as physically or emotionally harmful or life threatening and that has lasting adverse effects on the person’s functioning (i.e., mental, physical, social, or emotional). While we recognize other groups may use different definitions of trauma, in this chapter we use this inclusive and comprehensive definition.

Prevalence In the United States 70% of adults have experienced some form of trauma during their lifetimes (i.e., an estimated 223 million 153

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people). In samples taken from individuals receiving behavioral health services the estimates of trauma increase to over 90%. For children, one epidemiologic study found that almost 60% of the youth surveyed experienced one potentially traumatic event in the past year (Finkelhor et al. 2013); 48% had experienced more than one traumatic event.

Types of Trauma Table 15.1 outlines different types of trauma with definitions and examples. Trauma can be further grouped into one of three categories: acute, chronic, or complex traumas. Acute traumas are events that occur at a specific time and place and are usually short lived (e.g., a car accident, or physical assault that occurs one time). In contrast, chronic traumas are ongoing and occur repeatedly over long periods (e.g., ongoing childhood sexual abuse, witnessing domestic violence). Complex trauma refers to multiple traumatic events, often of an invasive, interpersonal nature. These events are severe and pervasive, such as profound neglect. They may occur early in life and disrupt many aspects of the child’s development and the formation of a sense of self. Since these events often occur with a caregiver, they interfere with the child’s ability to form a secure attachment. Many aspects of a child’s healthy physical and mental development rely on this primary source of safety and stability.

Implications of Trauma The timing of traumatic experiences may affect outcomes. Early childhood trauma refers to trauma that occurs before the age of 6 years. Experiencing trauma during such a critical developmental period can have a substantial impact. Young children’s brains are still rapidly developing, making them more vulnerable to the impact of trauma. Early trauma has been associated with reduced size of the brain cortex, which functions in memory, attention, thinking, language, consciousness, and perceptual awareness. Trauma has substantial impacts across different domains for developing children. Experiencing trauma can bring forth a wide range of emotional responses, including intense feelings of fear, loss of trust in others, decreased sense of personal safety, guilt, and shame. Table 15.2 delineates the impact of trauma. These presentations may differ based on chronologic age and developmental level or other factors (Box 15.1).

Adverse Childhood Experiences, Toxic Stress, and Adversity Both Krystal and Miguel, at age 8 years, have experienced multiple ACEs. As you read in this section, you will learn the significant impact that ACEs can play throughout both Krystal’s and Miguel’s development into adulthood.

TABLE 15.1 Types of Trauma With Definitions and Examples  

Trauma Type

Definition

Examples

Abuse

Infliction of injury

Physical abuse: an act that results in physical injury to a child or adolescent Sexual abuse: any interaction between a child and an adult (or another child) in which the child is used for the sexual stimulation of the perpetrator or an observer Emotional abuse: abuse that is emotional in nature Bullying: a deliberate and unsolicited action with the intent of inflicting social, emotional, physical, and/or psychological harm to someone who often is perceived as being less powerful

Neglect

Failure to care for properly

Physical neglect: failure to provide the basic necessities that a child needs to survive and thrive Educational neglect: failure to meet needs with regard to schooling and education Medical neglect: failure to provide necessary medical or mental health treatment

Loss

Death or separation from a loved one

Death of loved one

Medical traumatic stress: trauma responses of children and their families to single or multiple medical events

Admission to an intensive care unit for anaphylaxis

Natural disaster

Weather events that pose life-threatening risks

Hurricanes, earthquakes, tornadoes, wildfires, tsunamis, and floods, as well as extreme weather events such as blizzards, droughts, extreme heat, and wind storms

Violence

The use of physical force to inflict harm

Domestic violence: witnessing violence between mother and a partner

Medical

Incarceration of a caregiver Diagnosis of cancer and subsequent treatments

Neighborhood violence: witnessing someone being shot at a park or outside of one’s home Acts of terrorism: shootings, bombings, or other types of attacks

CHAPTER 15  Trauma, Resilience, and Child Development

TABLE 15.2  Examples of the Impact of

TABLE 15.3  Adverse Childhood Experi-

Domain

Examples of Impact

Abuse

Neglect

Household Dysfunction

Development

Difficulties focusing or learning in school Memory problems

Physical

Physical

Divorce/parental separation

Emotional

Emotional

Domestic/partner violence

Physical health

Experience stomachaches or headaches Poor appetite, poor growth, or digestive problems

Trauma on Domains of Wellbeing

Mental health

Relationships and attachment

ences (ACEs)

Sexual

Caregiver with mental health needs Caregiver with substance abuse Incarcerated caregiver

Difficulties managing emotions Difficulties navigating and adjusting to life’s changes

of participants reported at least one ACE, and more than 20% reported experiencing three or more ACEs. The study findings support a dose-response relationship between ACEs and negative health and wellbeing outcomes (i.e., the more ACEs, the higher the risk for negative outcomes). This study demonstrated a powerful relationship between childhood experiences and adult emotional health, physical health, and major causes of mortality in the United States (Fig. 15.1).

Inability to trust others Difficulty making/keeping friends

BOX 15.1  Children’s Reactions to Trauma Reactions to trauma will vary depending on multiple factors, including: • Age and developmental stage • Temperament • Perception of danger faced • Trauma history (cumulative effects) • Adversities faced following the trauma • Availability of adults who can offer help, reassurance, and protections

The Origin of ACEs The Centers for Disease Control and Prevention (CDC) and Kaiser Permanente adverse childhood experiences (ACEs) study is one of the largest and most impactful investigations into childhood abuse and neglect and the subsequent impact on adult health and wellbeing. The original study was conducted at Kaiser Permanente over the course of 2 years (1995–1997). The sample included over 17,000 participants who participated in both physical exams and surveys regarding their childhood experiences and current health status and behaviors (Table 15.3). This study divided trauma into three groups: abuse, neglect, and household challenges. The results indicated that ACEs are common. Specifically, almost two-thirds Death

Role of Race in ACEs The role of race in ACEs was not specifically addressed in the original CDC/Kaiser study. Race impacts the likelihood of ACEs (Sacks & Murphey, 2018). Specifically, in the United States 61% of Black children and 51% of Hispanic children experienced at least one ACE, compared to 40% of White children and 23% of Asian children. Clearly there is an adverse impact of being a person of color in a society where both systemic and institutional racism are rampant. Racism and discrimination are the foundations of many ACEs, including parental incarceration, neighborhood violence, and poverty. Neurobiology of Toxic Stress Advances in the field of genetics over the 20th century inform our understanding of the interplay between nature and nurture. The science of epigenetics demonstrates the interaction between environment and DNA. Gene-environment studies offer insight into why children respond differently to their environments. Two models serve as organizing frameworks. The diathesis-stress model suggests that certain genetic differences Early Death Disease, Disability, and Social Problems

Adoption of Health-risk Behaviors

Social, Emotional, and Cognitive Impairment

Disrupted Neurodevelopment Adverse Childhood Experiences Conception

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Mechanisms by Which Adverse Childhood Experiences Influence Health and Well-being Throughout the Lifespan

Fig. 15.1  The adverse childhood experiences (ACEs) pyramid. (From http://www.acestudy.org/.)

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place individuals at risk for poor outcomes in harsh environments (Caspi et al., 2002). More recently, the differential susceptibility model posits that individuals with certain genetic variations do worse in harsh environments but may have even better outcomes compared to peers without these variations in positive environments (Belsky & Pluess, 2009). While more work is needed, this field enhances our understanding of the interplay of nature, nurture, and health. Stress physiology offers important insight into the consequences of toxic stress. The physiologic response of the body to stressful situations involves the hypothalamic-pituitary-adrenocortical axis and the sympathetic-adrenomedullary system. These regulate the production of stress hormones: corticotropin-releasing hormone (CRH), cortisol, norepinephrine, and adrenaline in response to activation of the parasympathetic nervous system resulting in elevation of inflammatory cytokines and other mediators. The effects depend on the intensity and duration of stressors presented in relationship to protective factors. They range from brief but adaptive physiologic responses (e.g., increased heart rate, alertness) to long-term maladaptive responses (e.g., wear and tear across organ systems). In regard to the effect of stress and stress responses on young children, the National Scientific Council on the Developing Child developed a framework consisting of three different types of stress responses: positive, tolerable, and toxic. A positive stress response is a normal and healthy response to brief and mild stressors (e.g., first day of school). Positive stress responses when supported by protective, stable, and nurturing relationships offer opportunities for growth and can foster resilience. A tolerable stress response is associated with experiences that are more severe in intensity and/or duration and are often considered nonnormative experiences in children’s development. Examples include ACEs as defined in the original CDC/Kaiser study (e.g., parental incarceration) but also include other situations such as natural disasters (e.g., a global pandemic) (see Chapter 22), problems with social-political systems (e.g., racism), and death in a family. Supportive and protective adult relationships can make such experiences tolerable by reducing the cascade of harm caused by stress response systems. A toxic stress response is the result of intense and prolonged or frequent activation of these stress response systems in the absence of protective and supportive adult relationships. Examples include all of those noted for tolerable stress responses. Toxic stress responses during critical periods of development result in changes in brain architecture and derail healthy development (Garner et al., 2012).

Resilience

an interplay of intrinsic and extrinsic factors as well as sets of skills that can be modeled, nurtured, learned, and practiced. However, among all resilience factors the single most common and critical protective factor is the provision of safe, stable, and nurturing relationships (Garner & Saul, 2018). Understanding the roles of risk, adversity, and resilience are fundamental to the field of developmental and behavioral pediatrics. It is through this framework that positive developmental trajectories can be promoted on the individual (clinical) level as well as on a population (public health) level.

Resilience Factors Resilience factors help explain the different outcomes experienced by Krystal and Miguel. We see that Krystal has experienced several disruptions in her opportunity to maintain and develop a relationship with a protective and nurturing adult. Meanwhile, although Miguel experienced significant disruption in accessing this type of relationship at age 2 years, he has had access to the stability and support of his aunt as well as the positive and supportive climate of his school community.

Resilience represents a complex interaction between intrinsic and extrinsic factors (Boxes 15.2 and 15.3). Understanding these factors allows for promoting resilience on both the individual and the population level. The American Academy of Pediatrics (AAP) emphasizes that safe, stable, and nurturing relationships are the single most important factor in buffering adversity and building resilience (Garner et al., 2021). Ongoing research has increasingly focused on the vital role of external and ecological factors that promote positive outcomes (Table 15.4). In one study investigators examined the effects of positive childhood experiences, which included children’s ability to talk to family about their feelings, knowing that family stands with them during difficult times, participating in and enjoying community traditions, having a sense of belonging in high school, feeling supported by friends, having at least two nonparent adults who take genuine interest in them, and feeling safe and protected by an adult at home (Bethell et al., 2019). This study found that positive BOX 15.2 Internal/Individual Traits Associated With Resilience  

• • • • • • • • • • • •





While both Krystal and Miguel have each experienced complex traumatic events, their outcomes are different. These cases highlight that adversity and trauma alone do not determine developmental outcomes and help introduce resilience.















Defining Resilience Here we define resilience as the ability to maintain positive outcomes in the face of adversity. Resilience is the result of







High self-esteem Strong self-efficacy Internal locus of control External attributions of blame Optimism Grit (determination in the face of obstacles) Cognitive and emotional flexibility Reappraisal ability Social skills Flight inhibition/ability to face fears Easygoing temperament Sense of belonging

 

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Trauma, Resilience, and Child Development

157

TABLE 15.4 Modifiable Resilience Factors Relevant to Pediatric Clinical Practice  

Level

Resilience Factor

Description

Individual

Cognitive traits: positive appraisal style and executive function skills

Positive appraisal styles, defined by optimism and confidence about one’s ability to manage adversity, are associated with resilience to adversity. Improved executive function, especially cognitive flexibility and inhibitory control, is also associated with resilience to adverse childhood experiences (ACEs)

Family

Parenting

Responsive parenting and good parental relationships foster resilience. The HPA axis normalizes in traumatized children when parenting improves.

Maternal mental health

Maternal mental health problems are associated with risk for trauma as well as less sensitive parenting (a resilience factor); identifying and treating maternal psychopathology could foster resilience in children and prevent ACEs.

Self-care skills and household routines

ACEs are associated with poor sleep, nutrition, and exercise habits. Teaching children self-care skills and using consistent routines at home are associated with healthy resilient development.

Trauma understanding

Educating children and families about trauma in pediatric settings and through trauma-focused interventions builds resilience.

Individual/family

Traub, F., & Boynton-Jarrett, R. (2017). Modifiable resilience factors to childhood adversity for clinical pediatric practice. Pediatrics, 139(5). HPA, Hypothalamic-pituitary-adrenocortical.

childhood experiences were associated with reduced odds of behavioral health problems and increased odds of reporting social support even after adjusting for ACEs. Recently, Malhi and colleagues (2019) proposed a useful framework that integrates the neurobiologic and psychosocial underpinnings of resilience. The model uses a floodwall as an analogy and consists of four components. First, intrinsic factors from birth (e.g., temperament) form a foundation for resilience. The height of this foundation provides a baseline tolerance for stress that varies among individuals. Second, interconnected neurobiologic and psychosocial constructs (e.g., healthy neurodevelopment and learned behaviors) support resilience. These interconnected constructs form a floodwall or barrier that prevents the stress from overflowing and harming the individual. Third, a supportive environment supports active processing and regulation of neurobiologic and psychosocial factors to build and promote adaptive resilience. Such environments allow individuals to continue to build and support the flood wall of resilience as it experiences adversity. Fourth, the presence of adversity in a magnitude allows for safe testing and implementation of the neurobiologic and psychosocial constructs being built. When the magnitude of adversity (flood waters) exceeds the capacity of the first three components (the foundation, the floodwall, and the adaptive realtime supports) to withstand it, negative outcomes can occur (Malhi et al., 2019).

CLINICAL INTERVENTIONS Screening, Assessment, and Diagnosis of Trauma The clinician must properly assess trauma history to ensure accurate diagnoses for Krystal and Miguel. Clinicians can mistake or misinterpret trauma symptoms, which can often result in misdiagnosis.

Screening Screening can help identify children who have experienced trauma by eliciting trauma-related symptoms. Policymakers, advocates, and clinicians have increasingly called for universal screening for trauma in systems such as pediatric clinics. When conducting universal screening, clinicians must be prepared to link families to further mental health assessment and ensure safety throughout this process by reporting trauma if it has not been reported (i.e., contact CPS), ensuring child safety (e.g., assess risk of suicide among children), and creating a treatment approach (e.g., refer and ensure linkage to services as needed). Assessment Ideally the assessment should involve a multidisciplinary team. An ideal team would include medical, behavioral health, and educational expertise with additional support as needed. Box 15.4 includes key steps for conducting a comprehensive assessment of trauma.

Treatment and Trauma-Informed Care Krystal would likely benefit from receiving a traumaspecific treatment such as trauma-focused cognitive behavioral therapy (TF-CBT). As you read about traumainformed care, consider how much your clinic/institution implements these principles. Likewise, Miguel and his aunt are experiencing acute trauma, and their safety must be assessed. His anxiety is likely related to a long-term accumulation of trauma.

Definition and Principles of Trauma-Informed Care It is important to distinguish trauma-focused services from the concept of trauma-informed care. Trauma-focused services or trauma-specific treatments refer to evidence-based and best practice treatment models that facilitate recovery from problems resulting from the experience of trauma. These treatments

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BOX 15.3 External/Ecological Supports  

Associated With Resilience

• Supportive/nurturing attachment to caregivers • Opportunities for skill building using scaffolding-based approaches • Opportunities to experience and cope with manageable stressors • Building healthy emotional self-regulation skills • Use of faith, cultural, and other traditions to build stability • Access to family and parenting supports especially for atrisk infant-caregiver dyads • Access to high-quality early childhood education • Addressing physiologic needs by addressing food, financial, and housing insecurity • Access to social-emotional learning curricula • Engagement at school • Positive school climate

2.











3.

















4.







BOX 15.4 Key Steps for Conducting a  

Comprehensive Assessment of Trauma

• Assess for a wide range of traumatic events. Determine when traumatic events occurred so that they can be linked to developmental stages. • Assess for a wide range of symptoms (beyond posttraumatic stress disorder), risk behaviors, functional impairments, and developmental changes. • Gather information using a variety of methods (clinical interviews, standardized measures, and behavioral observations). • Gather information from multiple informants (e.g., child, caregivers, teachers, other providers).









directly address the emotional, behavioral, and physiologic impact of trauma on an individual’s life and facilitate improvement in related symptoms and functioning: they are designed to treat the consequences of trauma. Given the range of possible responses to trauma, not all patients with trauma histories need to or choose to access trauma-focused services. In contrast, trauma-informed care is a global, universal precautions approach to providing quality care. Traumainformed care can be applied to all aspects of health care and to all patients. Trauma-informed care is a strengths-based service delivery framework that is grounded in an understanding of, and responsiveness to, the disempowering impact of experiencing trauma. It seeks to maximize physical, psychological, and emotional safety in all health care encounters, not just those that are specifically trauma focused, and creates opportunities to rebuild a sense of control and empowerment while fostering healing through safe and collaborative patient-clinician relationships. See Box 15.5 for specific applications of trauma-informed care. The SAMHSA outlines six key principles of traumainformed care: 1. Safety: Safety is the first and most important principle. The staff and the people they serve should feel physically and psychologically safe throughout the system. The physical setting is safe, and interpersonal interactions promote a

5.







sense of safety. Patients determine if they feel safe or not. The institution or clinicians cannot decide when patients should feel safe. Trustworthiness and transparency: The system operations and decisions are conducted with transparency and the goal of building and maintaining trust among clients and their family members, as well as staff. Clinicians are able to provide patients with transparency in treatment. Peer support and mutual self-help: Peers are defined as individuals with shared lived experiences of trauma. With the prevalence of trauma, many individuals can offer some form of peer support and mutual self-help. These are key vehicles for establishing safety and hope, building trust, empowerment, enhancing collaboration, and using the stories and lived experiences to promote recovery and healing. Collaboration and mutuality: With this principle, importance is placed on partnering between staff and clients. This includes all staff from clerical and housekeeping to professional staff and administrators. Through this principle, they are able to show and demonstrate that healing happens in relationships and in the meaningful sharing of power and decision making. The system recognizes that everyone has a role to play in a trauma-informed approach. Empowerment, voice, and choice: Each individual’s strengths and experiences are recognized and built upon. There is a belief about resilience, ability to heal, and promote recovery from trauma. Clinicians must understand that historic

BOX 15.5 Applications of Trauma Informed Care  

Outpatient Setting • Involving patients in the treatment process • Screening for trauma • Training staff in trauma-specific treatment approaches • Engaging referral sources and partnering organizations • Pay attention to staff’s own trauma and self-care • Understand maladaptive behaviors we see in patients from a trauma perspective • Think “What happened to you?” not “What is wrong with you?” • Understand maladaptive behavior from a faulty coping style (sick) perspective rather than from a volitional (bad) perspective. • Model healthy/adaptive interactions, emotional stability, good coping skills, problem-solving skills

















Inpatient Setting • Meet the patient’s needs • Good staff/team communication to minimize splitting • Set limits in a firm but kind manner; be consistent • Work with team/unit staff to develop a unified safety plan for high-risk situations • Allow the opportunity for the patient to regain control without coercive measures • Debriefings are important; debrief staff and the patient after a code • Do not take verbalizations/actions personally; keep a professional empathic boundary













 

CHAPTER 15



power differentials have led to diminished voice and choice and even coercive treatments in the past. In traumainformed care patients are supported in shared decision making, choice and goal setting to determine the plan of action they need to heal and move forward. Through this, self-advocacy skills are taught and strengthened. 6. Cultural, historical, and gender issues: The system actively moves past cultural stereotypes and biases, offers culturally responsive services, leverages the healing value of traditional cultural connections, and recognizes and addresses historical trauma. It offers policies, protocols, and processes that are responsive to the racial, ethnic, and cultural needs of individuals served; and it recognizes and addresses historical trauma.

Promoting Resilience Understanding the science underlying the progression in Krystal’s and Miguel’s development allows clinicians to promote and build positive outcomes. All children and their families can benefit from developing healthy, strong, and supportive relationships and adaptive coping skills. Here we present a framework of opportunities that can be implemented in clinical settings.

Using a Resilience-Building Framework Clinicians can apply their understanding of trauma, adversity, and resilience to promote positive health care outcomes and trajectories. The Health Outcomes from Positive Experiences (HOPE) framework builds on our understanding of ACEs. This framework is a holistic model that approaches the complex interplay of ecological, biologic, and developmental factors that result in positive health trajectories. It recognizes the need to identify and mitigate ACEs while also supporting positive childhood experiences (Burstein et al., 2021). HOPE focuses on outcomes in four domains of development: physical development (e.g., adequate growth and nutrition, disease prevention, healthy physical activity), cognitive

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development (e.g., language, executive functioning skills), social development (e.g., secure attachments with trusting adults, self-advocacy skills), and emotional development (e.g., development emotional self-regulation skills, positive identity formation) (Sege & Browne, 2017). HOPE uses the four building blocks of relationships, environments, engagement, and emotional growth.

Building Resilience in Clinical Settings Regular visits and established relationships with families offer clinicians a unique opportunity to promote resilience during visits. Experts have recommended using a tiered approach (Garner & Saul, 2018). Tier 1 includes anticipatory guidance, trauma screening, and resilience promotion. Several tools can help clinicians identify traumatic stress in children (Table 15.5). Clinicians can also offer concrete guidance on positive discipline strategies, encourage healthy routines (e.g., shared reading), and screen for caregiver behavioral health conditions. Once children and families are at risk, tier 2 supports such as referrals and closer monitoring are needed. Clinicians should build strong partnerships with community-based organizations and leverage existing system-based models (e.g., Help Me Grow) to ensure they can connect families to additional support seamlessly when needed. Tier 2 should also include close surveillance of children at risk such as those in foster care, children of parents with complex health/mental health needs, and all children experiencing ACEs. We also encourage communication with school and community providers such as teachers, coaches, and counselors. Finally, once children demonstrate red flags or symptoms of stress (e.g., anxiety, depressions, disruptive behaviors, substance use, school failure) tier 3 supports should be implemented. Clinicians can refer to specialists as indicated by need (e.g., psychologists, developmental-behavioral pediatricians, child and adolescent psychiatrists) for evidence-based treatment and intervention. Interdisciplinary care models (see Chapter 115) are well suited for tiered approaches.

TABLE 15.5 Instruments for Assessing Traumatic Stress in Young Children  

Name

Author

Age

Child Behavior Checklist (CBCL)

Achenbach and Rescorla (2001)

1.5–5 yr

Posttraumatic Stress Disorder Semi-Structured Interview and Observation Record

Scheeringa and Zeanah (1994)

0–4 yr

Posttraumatic Symptom Inventory for Children (PT-SIC)

Eisen (1997)

4–8 yr

Preschool Age Psychiatric Assessment (PAPA)

Egger and Angold (2004)

2–5 yr

PTSD Symptoms in Preschool Aged Children (PTSD-PAC)

Levendosky et al. (2002)

3–5 yr

Traumatic Events Screening Inventory-Parent Report Revised (TESI-PRR)

Ghosh et al. (2002)

0–6 yr

Trauma Symptom Checklist for Young Children (TSCYC)

Briere et al. (2001)

3–12 yr

Violence Exposure Scale for Children-Preschool Version (VEX-PV)

Shahinfar et al. (2000)

4–10 yr

Violence Exposure Scale for Children-Revised Parent Report (VEX-RPR)

Shahinfar et al. (2000)

For parents of preschool-aged children aged 4–10 yr

 

 

 

 

 

 

 

 

 

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Secondary Trauma, Resilience, and Self-Care for Clinicians In helping children like Krystal and Miguel who have experienced trauma, clinicians themselves can experience significant emotional reaction. Such secondary trauma is common, and the next section offers strategies to manage it.

Secondary trauma, also known as vicarious trauma, is emotional stress that results when an individual hears about the firsthand trauma experiences of another. For clinicians, care of traumatized children may take an emotional toll that can impact their functioning and quality of life. Clinicians need to be aware of the potential effects of this indirect trauma exposure. Awareness allows clinicians to take care of themselves, and helps them to provide the best care possible for the children they serve. To decrease the impact of secondary trauma it is important that providers engage in self-care (Boxes 15.6 and 15.7). BOX 15.6 Ways to Improve Self-Care  

• Pay attention to personal emotional wellbeing and coping • Create personal plan for self-care • Address four key areas: emotional, physical, psychological, and spiritual health • Learn to process with supervisor/colleagues; debrief







BOX 15.7 Seven Ways to Engage in  

Self-Care

1. Maintain friendships. Be sure to connect regularly with friends and loved ones. Do things together that bring you joy. 2. Set a bedtime. Get into the routine of getting quality sleep. Putting down electronics 1 hr before bed will improve sleep. Try relaxation or meditation if you have trouble. 3. Accept help when you need it. You do not have to deal with things alone. If you are worried or stressed, talk to someone (e.g., friend, loved one, therapist, doctor). 4. Exercise regularly. This reduces stress levels and improves your health. 5. Eat a balanced diet. 6. Be kind to yourself. Encourage and reward yourself, for achievements, big or small. Allow yourself grace to make mistakes. 7. Plan something to look forward to, whether that be a weekend hike, vacation, or even a happy hour with friends.



 











SYSTEMIC INTERVENTIONS Addressing Trauma in Schools Systemic interventions help address the wide reach of trauma. For children, schools are an ideal setting for such interventions. Cognitive Behavioral Intervention for Trauma in Schools (CBITS) is a program that was developed to reduce the negative effects of trauma (e.g., symptoms of posttraumatic stress

disorder, depression, and other behavioral issues) and improve children’s functioning (e.g., grades and attendance, peer and parent support, and coping skills) (Jaycox et al., 2018). Schoolbased mental health professionals (e.g., social workers, counselors, psychologists) implement the program. Schools that have implemented CBITS have had significantly higher retention rates, with 98% of patients completing treatment, compared to only 37% with traditional outpatient treatment (Jaycox et al., 2010). CBITS is effective among diverse populations, including students who recently immigrated, urban youth, and youth of color (Jaycox et al., 2002, 2010; Stein et al., 2003).

Building Resilience in Schools Dray and colleagues (2017) conducted a metaanalysis to examine the effect of universal, school-based, resilience-focused interventions on the mental and emotional wellbeing in children and adolescents. The study found that resilience-focused interventions were effective relative to a control in reducing depression symptoms, internalizing problems, externalizing problems, and general psychological distress. These findings suggest that universal resilience-focused interventions are promising in both children and adolescents especially when a cognitive-behavioral therapy–based approach is used. Additional studies are needed as there was a limited number of trials providing data sufficient for metaanalysis, and this remains an area for further research.

Building Resilience Through Policy Policies at the clinical and systemic level can help promote resilience. The AAP recognizes the interdisciplinary need for clinicians to partner with schools, community organizations, and other stakeholders to support optimal developmental trajectories for all children (Garner et al., 2021). Clinicians, parents, teachers, and coaches to legislators and other civic leaders can all play an important role. Clinicians have a unique opportunity to serve as a voice for children at the local, state, and federal levels. The AAP also highlights the importance of working with key stakeholders to translate advances in understanding developmental science for policymakers to promote positive outcomes on the population health level (Garner et al., 2012). On the clinical level, we encourage readers to implement trauma-informed care, use trauma and resilience screening tools, and regularly collaborate with school and other community-based professionals to address trauma and promote resilience in their practices and health systems. On the systemic level, we encourage readers to advocate at the local, state, and federal levels to continue to address and mitigate complex social determinants of health (e.g., food security, housing, parent mental health, school funding for evidencebased interventions). Additionally, we advocate for continued funding to further research that can enhance our understanding of successful individual and public health level interventions to mitigate trauma and promote resilience. We also advocate for continued development of educational models to promote best practices to be disseminated to all stakeholders involved in the health and wellbeing of children.

 

CHAPTER 15

FURTHER CONSIDERATIONS An understanding of trauma, adversity, toxic stress, and resilience provides us with a comprehensive model by which to promote healthy outcomes on the individual and population levels. This requires reassessing current models and reimbursement structures in health care and other sectors. This science calls for further investigation of the benefits of transitioning from an illness model of health care to a wellness and outcomes–focused model.

CONCLUSION Krystal and Miguel represent many but not all of the children encountered in developmental-behavioral pediatric settings. Krystal has experienced significant trauma and toxic stressors with a dearth of resilience-promoting factors. Meanwhile, Miguel with a similar experience of trauma and adversity had a very different developmental trajectory due to the strong, stable, and supportive relationships he experiences with his aunt, school team, and care professionals.

Each of these cases has themes and problems that offer several opportunities of contact. Care in these cases calls for clinicians to do more than just assess for immediate safety, especially in Miguel’s case with concern for active domestic violence at home, but also how to ensure safe, positive, and equitable outcomes. Taken together, these cases illustrate the importance of care that helps build skills and supports resilience among all children.

REFERENCES Achenbach, T. M., & Rescorla, L. A. (2001). Manual for the ASEBA school-age forms & profiles. University of Vermont, Research Center for Children, Youth, & Families. Belsky, J., & Pluess, M. (2009). Beyond diathesis stress: Differential susceptibility to environmental influences. Psychological Bulletin, 135(6), 885–908. Bethell, C., Jones, J., Gombojav, N., Linkenbach, J., & Sege, R. (2019). Positive childhood experiences and adult mental and relational health in a statewide sample: Associations across adverse childhood experiences levels. JAMA Pediatrics, 173(11), e193007. Briere, J., Johnson, K., Bissada, A., Damon, L., Crouch, J., Gil, E., Hanson, R., & Ernst, V. (2001). The Trauma Symptom Checklist for Young Children (TSCYC): Reliability and association with abuse exposure in a multi-site study. Child Abuse & Neglect, 25(8), 1001–1014. Burstein, D., Yang, C., Johnson, K., Linkenbach, J., & Sege, R. (2021). Transforming practice with HOPE (healthy outcomes from positive experiences). Maternal and Child Health Journal, 1–6. Caspi, A., McClay, J., Moffitt, T. E., Mill, J., Martin, J., Craig, I., Taylor, A., & Poulton, R. (2002). Role of genotype in the cycle of violence in maltreated children. Science, 297(5582), 851–854. Dray, J., Bowman, J., Campbell, E., Freund, M., Wolfenden, L., Hodder, R. K., McElwaine, K., Tremain, D., Bartlem, K., Bailey, J., Small, T., Palazzi, K., Oldmeadow, C., & Wiggers, J. (2017). Systematic review of universal resilience-focused interventions

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targeting child and adolescent mental health in the school setting. Journal of the American Academy of Child & Adolescent Psychiatry, 56(10), 813–824. Egger, H. L., & Angold, A. (2004). The Preschool Age Psychiatric Assessment (PAPA): A structured parent interview for diagnosing psychiatric disorders in preschool children. In R. DelCarmen-Wiggins & A. Carter (Eds.), Handbook of infant, toddler, and preschool mental health assessment (pp. 223–243). Oxford University Press. Eisen, M. (1997). The Development and Validation of a New Measure of PTSD for Young Children. Unpublished Manuscript. Finkelhor, D., Turner, H. A., Shattuck, A., & Hamby, S. L. (2013). Violence, crime, and abuse exposure in a national sample of children and youth: An update. JAMA Pediatrics, 167(7), 614–621. Garner, A. S., & Saul, R. A. (2018). Thinking developmentally: Nurturing wellness in childhood to promote lifelong health. American Academy of Pediatrics. Garner, A. S., Shonkoff, J. P., & Committee on Psychosocial Aspects of Child and Family Health, Committee on Early Childhood, Adoption, and Dependent Care, Section on Developmental and Behavioral Pediatrics. (2012). Early childhood adversity, toxic stress, and the role of the pediatrician: Translating developmental science into lifelong health. Pediatrics, 129(1), e224–e231. Garner, A., Yogman, M., & Committee on Psychosocial Aspects of Child and Family Health, Section on Developmental and Behavioral Pediatrics, Council on Early Childhood, (2021). Preventing childhood toxic stress: Partnering with families and communities to promote relational health. Pediatrics, 148(2). e2021052582. Ghosh, C., Ford, J., Racusin, R., Acker, M., Bosquet, K., Rogers, C., & Edwards, J. (2002). Trauma events screening inventory-parent report revised. San Francisco: The Child Trauma Research Project of the Early Trauma Network and The National Center for PTSD Dartmouth Child Trauma Research Group. Jaycox, L. H., Cohen, J. A., Mannarino, A. P., Walker, D. W., Langley, A. K., Gegenheimer, K., Scott, M., & Schonlau, M. (2010). Children’s mental health care following Hurricane Katrina: A field trial of trauma-focused psychotherapies. Journal of Traumatic Stress: Official Publication of The International Society for Traumatic Stress Studies, 23(2), 223–231. Jaycox, L., Langley, A., & Hoover, S. (2018). Cognitive Behavioral Intervention for Trauma in Schools (CBITS) (2nd ed.). RAND Corporation. Jaycox, L. H., Stein, B. D., Kataoka, S. H., Wong, M., Fink, A., Escudero, P. I. A., & Zaragoza, C. (2002). Violence exposure, posttraumatic stress disorder, and depressive symptoms among recent immigrant schoolchildren. Journal of the American Academy of Child & Adolescent Psychiatry, 41(9), 1104–1110. Levendosky, A. A., Huth-Bocks, A. C., Semel, M. A., & Shapiro, D. L. (2002). Trauma symptoms in preschool-age children exposed to violence. Journal of Interpersonal Violence, 17, 150–164. Liu, D., Diorio, J., Day, J. C., Francis, D. D., & Meaney, M. J. (2000). Maternal care, hippocampal synaptogenesis and cognitive development in rats. Nature Neuroscience, 3(8), 799–806. Malhi, G. S., Das, P., Bell, E., Mattingly, G., & Mannie, Z. (2019). Modelling resilience in adolescence and adversity: A novel framework to inform research and practice. Translational Psychiatry, 9(1), 1–16. Sacks, V., & Murphey, D. (2018). The prevalence of adverse childhood experiences, nationally, by state, and by race or ethnicity. Child Trends. Retrieved from: https://www.childtrends.org/publications/

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prevalence-adverse-childhood-experiences-nationally-state-raceethnicity. Sege, R. D., & Browne, C. H. (2017). Responding to ACEs with HOPE: Health Outcomes from Positive Experiences. Academic Pediatrics, 17(7), S79–S85. Shahinfar, A., Fox, N. A., & Leavitt, L. A. (2000). Preschool children’s exposure to violence: Relation of behavior problems to parent and child reports. American Journal of Orthopsychiatry, 70(1), 115–125. Sheeringa, M. S., & Zeanah, C. H. (1994). PTSD semi-structured interview and observation record for infants and young children.

Department of Psychiatry and Neurology, Tulane University Health Sciences Center, New Orleans, LA. Stein, B. D., Jaycox, L. H., Kataoka, S. H., Wong, M., Tu, W., Elliott, M. N., & Fink, A. (2003). A mental health intervention for schoolchildren exposed to violence: A randomized controlled trial. JAMA, 290(5), 603–611. Traub, F., & Boynton-Jarrett, R. (2017). Modifiable resilience factors to childhood adversity for clinical pediatric practice. Pediatrics, 139(5):e20162569.

16 Childcare W. Steven Barnett and Anna Malia Beckwith

For additional material related to the content of this chapter, please see Chapters 6 and 19.

VIGNETTE Avery’s parents raised several concerns about childcare during their 1-month well child visit. Avery’s mother has 6 weeks paid leave; the father is self-employed with no leave options. Concerns include potential developmental effects of parental separation, starting at different ages, long hours, and different types of care, and health risks from group care. One option is for Avery’s grandmother to provide care part time while Avery’s father or mother reduce their work time. However, this would reduce the family’s income and harm their career progress, and they have difficulty meeting expenses as it is. It seems that whatever choice they make will be stressful. Planning for childcare and work after the birth of a child poses difficult challenges for parents. Avery’s family benefitted from paid leave, an option not available to everyone. Parents may choose not to use nonparental childcare before age 1 year, but many cannot afford to make this choice, and most will use regular childcare by age 1 year. The challenges parents face are not just financial, but involve complex child development issues. Lost income from forgone employment can negatively impact child health and development, while childcare can have positive or negative impacts depending on the child and family, quality of care, and context. Clinicians can provide information that helps parents make these difficult decisions. Fortunately for Avery and her parents, their clinician talked with them about the importance of responsive adult-child interactions and rich language environments in parental and nonparental care as well as minimizing screen time. Their clinician also has at hand information on the local Early Head Start and childcare resource and referral agency.

TYPES OF CHILDCARE Childcare encompasses a wide range of different arrangements for young children (Gable, 2014). For school-age children, the public schools are the largest provider of childcare supplemented by before- and after-school care and a variety of summer programs. Several types of nonparental care serve children prior to kindergarten: relative, nonrelative, and center. Relative and nonrelative care are provided in the child’s own home or another home. All childcare potentially supports learning and development, and parental employment. However, arrangements vary considerably in their support for learning and development and their hours and convenience as a work support.

The terms parents and caregivers use for childcare are as varied and unstandardized as the arrangements themselves: babysitting, nannies, daycare, family home daycare or childcare, preschool, pre-K or prekindergarten, child development or early learning center, Head Start, and Educare (Gable, 2014). These names more clearly identify differences in where the arrangements are located and in hours than in the quality of care provided and its support for learning and development. Children experience multiple types of childcare arrangements sometimes in combination and typically changing as they grow older (Chaudry et al., 2021). For example, a child might attend a childcare center part-time in the morning followed by grandparent care in the afternoon. In the first 3 years of life home care is more common; from age 3 years on, children are more likely to attend centers as their primary childcare arrangement.

CHILDCARE ARRANGEMENTS Most children begin regular childcare by age 1 year, and the vast majority attend a center-based program prior to kindergarten (Chaudry et al., 2021). Public funding has greatly expanded to support these services in recent years, yet there remain large inequalities in childcare arrangements with the lowest use of care, especially higher-quality center care, by parents with less education and income. In 2020 the COVID-19 pandemic greatly disrupted childcare arrangements (Barnett & Jung, 2021). Many parents withdrew children from care, especially centers, and many center-based programs, especially public programs, shifted to remote learning and no longer provided in-person care. In 2019 about 60% of children not yet in kindergarten participated in at least one regular nonparental care arrangement (Barnett & Li, 2021). Participation varied from 42% prior to age 1 year to more than 80% at age 5 years before kindergarten (Fig. 16.1). Relative and nonrelative care decline with age, while weekly center care increases from less than 15% before age 1 year to more than 70% at ages 4 and 5 years. This pattern reflects both parents’ beliefs and attitudes about what is best for the child and the realities of access and affordability (Chaudry et al., 2021). Infant and toddler child care is much more expensive than care for older preschoolers who can be provided with quality care in larger groups with fewer staff (Chaudry et al., 2021). In addition, the availability of free public programs is greater for children ages 3 and, especially, 4 years. 163

164

SECTION 3  Social and Environmental Contexts of Children

100% 80% 60% 40% 20% 0% All birth-5

Under 1 Any Care

Age 1 Relative

Age2 Nonrelative

Age 3

Age 4

Age 5

Center

Fig. 16.1 Childcare arrangements by age, 2019 (Barnett & Li, 2021).  

Government support for early childhood care and education services has expanded access to child care with the greatest benefits to low-income families as many public programs limit eligibility based on income (Chaudry et al., 2021). State childcare subsidies limit eligibility to low-income families. Federally funded Head Start and Early Head Start primarily serve children in poverty. Most state- and local-funded preschool programs limit eligibility by income, though a growing number are universal. One constraint is that public programs often lack adequate funding to serve all eligible families, and this characterizes childcare subsidy programs, Head Start and Early Head Start, and even some “universal” preschool programs. The bottom line is that childcare participation rates rise steadily with family income, many low- and moderateincome families cannot access quality childcare, and access to quality center-based care is U-shaped with young children in middle-income families having the lowest participation rates (Barnett & Li, 2021).

DEFINING QUALITY IN THE CHILDCARE SETTING Recognition of factors associated with a high-quality childcare experience is crucial to parents and pediatric clinicians, as research has shown positive impacts across multiple domains with provision of high-quality early childhood education (Barnett, 2021). Improved cognition and academic achievement scores have been observed in recipients of this care. More recently, physical health benefits, including significantly lower prevalence of risk factors for cardiovascular and metabolic diseases in adulthood, were found to be associated with high-quality care (Campbell et al., 2014). Therefore benefits of a high-quality early childcare experience may last a lifetime (Barnett, 2021). However, childcare often is not of high quality—and has no developmental benefits—while poor-quality care has been found to have (modest) negative impacts on development (Barnett, 2021). Traditionally quality has been defined by process quality (a child’s experiences) and structural quality (program features).

Particularly important for process quality are strong, sustained relationships with caregivers who are highly responsive to children (Chaudry & Sandstrom, 2020). Structural quality that supports good interactions is more readily regulated by state licensing standards, which may fall below expert recommendations (Gable, 2014). Greater than 75% of states currently utilize a quality rating and improvement system (QRIS) (Donoghue, 2017). A QRIS sets specific quality levels, which are defined by evidence-based, measurable levels, often represented as a star rating. These ratings tend to be weakly related, at best, to process quality (Chaudry et al., 2021). Much of the childcare parents use is neither rated by a QRIS nor licensed by states (Chaudry et al., 2021). The American Academy of Pediatrics (AAP) is one of many national organizations that has created standards and a system for voluntary accreditation (Donoghue, 2017). Indicators of quality in childcare are summarized in Table 16.1. Staffing factors play key roles in determining the quality of a childcare setting. Dedicated, nurturing, attentive adults are paramount to a successful experience. The clinician should be aware of guidelines regarding adult-to-child ratios and group size (Table 16.2). When responsible for fewer children, a caregiver is better able to ensure each child’s safety and provide sufficient attention to emotional and learning needs. Provision of a small-group setting also ensures peer exposure to support social learning. Childcare settings vary considerably regarding standards for staff education or training (Donoghue, 2017), which may impact the opportunity for educational and emotional enrichment of attendees. Compensation may not be adequate to retain staff with bachelor’s or associate’s credentials in early childhood education (Whitebook et al., 2018), and provision of career development opportunities may be limited. Without formal training in early childhood development and behavior, it may be difficult for staff to implement a developmentally appropriate curriculum or address behavior concerns. Annually 5000 children are expelled from childcare settings; this rate far exceeds that of school-aged peers, and the rate is higher for boys and Black children (Donoghue, 2017; Meek & Gilliam,

 

CHAPTER 16 Childcare

165

TABLE 16.1 Quality Indicators in the Childcare Setting  

1. Staffing

2. Environment

3. Health Preparedness

4. Education and Emotional Enrichment

• Ratio for sufficient supervision • Relationship: family member vs. center based • Qualifications, education • Sufficient criminal history background check • Provider turnover

• Cleanliness • Injury prevention: equipment/toy safety • Food storage, preparation • Toxic product storage

• Safe sleep practices • Medication administration • Infection control, immunization status • Nutrition • Physical activity • Emergency procedures: first-aid training, disaster preparation

• Curriculum focused on child development, with clear schedule of activities • Behavior management strategies that focus on positive guidance and avoid negative punishment techniques, such as yelling, harsh criticism, or physical punishment • Access to age-appropriate learning materials (books, blocks, puzzles, art materials) • Focus on language exposure: staff understanding of the value of speaking to infants/toddlers, reading to the young child







































Adapted from American Academy of Pediatrics; American Public Health Association; National Resource Center for Health and Safely in Child Care and Early Education. (2013). Stepping stones to caring for our children (3rd ed.). https://reader.aappublications.org/stepping-stonesto-caring-for-our-children/.

TABLE 16.2 Recommended Childcare Staffing  

Center Based

Family Childcare

Child Age

Ratio

Group Size

Child Number by Age

Ratio

Birth–12 mo

1:3

≤6

None 200 CGG repeats) in the next generation. Male premutation carriers transmit the premutation to all daughters (not sons, as sons inherit the Y chromosome from their father); however, the premutation is typically stable in paternal transmission, and the repeat length is unlikely to significantly expand when paternally inherited. Premutation carriers are at risk for developing fragile X premutation–associated disorders, including FXPOI, FXTAS, and FXAND, described in more detail later. See Fig 28.2 for an example pedigree demonstrating inheritance and clinical features.

Fig. 28.1  The FMR1 gene promoter region classified by CGG repeat number with transcription and translation effects.

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SECTION 4  Biological Factors, Medical Conditions, and Exposures Affecting Development and Behavior

Fig. 28.2 Example pedigree of familial FMR1 inheritance and clinical presentations among family members (see chapter-opening vignette). ADHD, Attention-deficit/hyperactivity disorder; ART, advanced reproductive technology; ASD, autism spectrum disorder; CGG, number of cytosine-guanine-guanine repeats on the X chromosome(s); DD, developmental delay; ID, intellectual disability; LD, learning disability; PE tubes, pressure equalization tubes.  

Factors that influence the risk for expansion from a premutation to a full mutation when inherited include the sex of the carrier parent, the carrier parent’s CGG repeat number, and the presence and count of AGG (adenine-guanine-guanine) interruptions embedded within the carrier parent’s FMR1 CGG expansion, sometimes called AGG anchors. The presence of AGG interruptions serves to stabilize CGG repeats during transmission to the next generation, with the greatest stabilizing impact occurring when the mother’s premutation is 60 to 100 CGG repeats and multiple AGG interruptions are embedded. Maternal premutation transmissions lacking AGG interruptions within this 60 to 100 CGG repeat range pose the risk for CGG repeat expansion into a full mutation in the next generation. Maternal premutation expansions with over 100 CGG repeats almost universally expand to a full mutation in the next generation regardless of the number of AGG anchors. The full mutation (>200 CGG repeats) leads to hypermethylation of the gene, resulting in suppression of mRNA transcription and therefore little or no FMRP production. It is the absence or deficiency of FMRP that causes FXS. Females with a full mutation generally have a milder clinical presentation compared to males due to the presence of the second X chromosome, which expresses FMR1 and produces FMRP, although this can be dependent on X inactivation ratios (the

percentage of cells with the normal FMR1 allele on the inactive X chromosome). Phenotypic variability is commonly observed in males and females with FXS, with a common source attributed to mosaicism. Both repeat size mosaicism (mosaicism among various mutation size categories: full mutation/premutation/intermediate) and methylation mosaicism (a lower methylation fraction despite >200 CGG repeats) may contribute to various levels of FMRP production. While it remains difficult to extrapolate the effects of mosaicism identified in peripheral blood to all tissues throughout the body, partial FMRP expression may be sufficient to positively impact clinical outcomes.

FRAGILE X SYNDROME Physical, Medical, and Motor Features of FXS Physical features commonly associated with FXS include large head circumference, long face, large or prominent ears (often with cupping and smoothness of the pinnae), higharched palate, hyperextensible joints especially evident in the hands (including double-jointed thumbs), smooth velvety skin, hypotonia, and pes planus (Fig. 28.3). In males, macroorchidism (large testicles) can emerge beginning in puberty, and there is increased risk for inguinal hernias.

 

CHAPTER 28 Fragile X Syndrome and FMR1 Variants

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Fig. 28.3 Facial features of fragile X syndrome.  

However, approximately 30% of children with FXS do not have obvious physical features, thus DNA testing should not be dependent on these features and is indicated in any child with developmental delay of unknown etiology, intellectual disability, or ASD. Medical problems associated with FXS include increased risk for strabismus (∼15%), recurrent otitis media often requiring tympanostomy tubes (∼40%–50%), gastrointestinal symptoms such as gastroesophageal reflux, chronic constipation or loose stools, and sleep disorders (∼50%–70%), including challenges with falling asleep, staying asleep, and increased risk for obstructive sleep apnea. Feeding difficulties are common in infancy. Approximately 10% to 15% of males and 5% of females have a cooccurring seizure disorder, typically presenting around 6 years of age. Connective tissue laxity is common and underlies the increased risk for hernias, joint dislocations, pes planus/ankle pronation, and mitral valve prolapse. Males and females with FXS are fertile. While research on aging in FXS is minimal, age span is estimated to be normal or just slightly reduced compared to the general population. A subpopulation of full mutation FXS includes those with the Prader-Willi phenotype (FXPWP). This phenotype includes clinical features of obesity, hyperphagia, and small genitalia or delayed puberty, but without cytogenetic or methylation abnormalities at 15q11-13 as in typical PraderWilli syndrome (PWS). Many cases also present with marked hypotonia and feeding difficulties in infancy similar to PWS.

The similarities between this subset of patients with FXS and those with typical PWS have been attributed to lower mRNA expression of CYFIP1, a protein in the 15q deleted region of PWS that is regulated by FMRP. Individuals with FXS also commonly have hypotonia and motor skill delays. Early motor milestones are often delayed, with average age of sitting at 8 to 9 months and walking independently at 18 months in males with FXS. Other neuromotor deficits often include challenges with balance and motor coordination. Fine motor deficits coupled with joint laxity in the hands can affect handwriting and self-care skills.

Developmental-Behavioral and Cognitive Features of FXS The behavioral phenotype of FXS is characterized by symptoms across many different domains of functioning, and like most genetic disorders there is broad phenotypic variability between affected individuals. Further, symptoms within the FXS phenotype present differently in males compared to females, where males almost universally show moderate intellectual disability while only approximately one-third of females have intellectual disability. In infancy and early childhood delayed milestones in motor and speech-language domains are common and the most typical reason for genetic testing leading to the FXS diagnosis. Typical age for walking independently is around 18 months, and first words around 24 to 26 months, although there is a wide range as seen in typical children. Speech-language

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disorders, stereotyped language, and perseverative speech are very common in children with FXS, although approximately 10% are nonverbal or minimally verbal into adulthood. Behavioral challenges in childhood in both males and females can include inattentive behaviors with or without hyperactivity/impulsivity, leading to a diagnosis of ADHD in up to 80% of males and 35% of females. Anxiety, sensory sensitivities, and hyperarousal are also often frequently seen, with anxiety symptoms sometimes presenting as extreme shyness or selective mutism, more commonly in females. Other prominent symptoms of anxiety include social anxiety, specific phobias, irritability or emotional lability, and obsessive or perseverative behaviors. Individuals with FXS also often demonstrate repetitive or stereotyped behaviors, including physical motor mannerisms such as body rocking or hand flapping, stereotypic speech patterns, ritualized or repetitive activities, and/or restricted interests. Gaze avoidance and poor eye contact are also common. The combination of anxiety and sensory sensitivities, as well as challenges with communication, can lead to behavioral escalations and low frustration tolerance, which can subsequently be associated with the possibility of self-injury (often hand or arm selfbiting) and aggressive or destructive behaviors (Hagerman & Hagerman, 2020). The combination of behavioral symptoms described and higher rates of social communication deficits often leads to consideration of the cooccurrence of ASD. Approximately

50% of boys and 20% of females with FXS meet Diagnostic and Statistical Manual of Mental Disorders, fifth edition (DSM-5) criteria for ASD. The profile of ASD symptoms and behaviors overlaps with those seen in idiopathic autism, including language deficits, decreased eye contact/gaze avoidance, and stereotyped speech and motor behaviors. However, compared to idiopathic autism, individuals with ASD and FXS often show more prominent social withdrawal, higher levels of anxiety, and less intense complex repetitive and restricted behaviors as measured by ASD diagnostic instruments. However, individuals with FXS and ASD also tend to exhibit a more pronounced degree of social motivation in that they often initiate simple social exchanges and seek out specific social praise and approval in a manner that is not as typical for those individuals who present with idiopathic autism. The presence of ASD is associated with lower cognitive skills, more behavioral challenges and medication use, and higher rates of seizures compared to those with FXS without ASD. While most males with FXS fall in the moderate intellectual disability range, only approximately one-third of females have intellectual disability. Another one-third of females instead show milder symptoms such as learning disabilities (most commonly in math), borderline cognitive functioning, attention deficits/ADHD, executive functioning deficits, motor coordination deficits, and anxiety symptoms. The remaining females with a full mutation can have very few cognitive or

TABLE 28.1 Evaluate Checklist for Evaluation and Treatment of Children and Adolescents  

With Fragile X Syndrome (FXS) FXS: Evaluation Checklist Referrals for evaluations and treatments

Developmental skills (birth–3 yr) or cognitive assessment (≥4 yr) for ID or learning disabilities, adaptive functioning Speech-language/communication evaluation OT/PT evaluation of fine and gross motor skills Sensory sensitivities/sensory processing Evaluation for autism and/or ADHD if not previously completed Psychological/behavioral therapies (as indicated for anxiety, outbursts, irritability, aggressive behavior, self-injury) Special education/IEP supports

Genetic counseling

Family history (≥3-generation pedigree) with targeted inquiry for relatives at risk for having FXS, fragile X premutation, or with symptoms of premutation-associated conditions Coordinate fragile X testing for siblings or other family members as indicated

Medical evaluations

Audiology evaluation Vision/strabismus examination Examination related to connective tissue laxity (pes planus, hernias, scoliosis) GI disorders, including feeding, reflux, constipation, loose stools Consideration of increased risk for seizures Cardiac examination Management of sleep disorders

Psychopharmacologic treatment

Consideration of medication treatments for anxiety, attention/ADHD, irritability, aggression, self-injury, hyperarousal, sleep disorders

Family support

Refer to advocacy and support groups for family, siblings Provide educational materials or resources Connect with social work, community services for disabilities

 

 

ADHD, Attention-deficit/hyperactivity disorder; GI, gastrointestinal; ID, intellectual disability; IEP, individualized education plan; OT, occupational therapy; PT, physical therapy.

 

CHAPTER 28 Fragile X Syndrome and FMR1 Variants

behavioral/emotional symptoms, many not being identified until motherhood following FXS diagnosis in their child. Cognitive profiles of individuals with FXS often show relative weaknesses in sequential processing of information, auditory and visual attention, working memory, response inhibition, cognitive flexibility, and arithmetic reasoning.

Evaluation and Treatment Approaches for FXS Management of the child with FXS requires an interdisciplinary team approach that includes community and school-based therapies and educational supports, medical screenings and treatments, and consideration of medication treatments. Upon a new diagnosis, it is common that the individual is already receiving treatment for developmental or behavioral challenges; however, the combination of therapies, behavioral supports, and special education should be reconsidered in the context of the new FXS diagnosis. Evaluations for new diagnoses should include assessment of developmental or cognitive skills, academic testing, speechlanguage, motor, social-emotional evaluation including anxiety disorders and assessment for ASD, sensory processing, behavioral concerns, attention/ADHD, executive functioning, and self-care/adaptive skills (Martin et al., 2013). Genetic counseling is also important for family counseling and cascade genetic testing recommendations, as well as connecting families with resources including advocacy organizations and community supports. The pediatrician plays many important roles, including educating families, therapists, and school settings about FXS; making referrals for appropriate evaluations and therapies; providing guidance for best practices in assessment of children with FXS; and helping to provide coordination of medical screenings and medication management for behavioral and psychological symptoms of FXS. Table 28.1 includes guidance for the child’s medical provider following a new diagnosis. FXS specialists have made considerable efforts to identify and describe optimal methods of psychological and behavioral assessment, including validation of many standardized psychological tests and behavioral measures in FXS and alternative FXS-specific scoring methods for some measures of cognition and behavior such as the Stanford-Binet 5 and Aberrant Behavior Checklist. Detailed strategies to help therapists and other professionals obtain optimal results when evaluating individuals with FXS have been developed. Examples include preparation due to heightened anxiety such as practice visits to a testing setting and social stories, demonstration of the requested task to completion due to strengths in simultaneous processing, and visual supports such as task completion sticker charts or checklists due to visual strengths. Environmental adaptations due to sensory sensitivities and monitoring for physical and behavioral signs of increasing hyperarousal are important so evaluators can respond with breaks or positive supports. Detailed recommendations for assessment of all domains (cognition, behavior, language, motor, adaptive) have been developed for professionals, including research on specific standardized measures in FXS and considerations for behavioral supports for testing. These can be found in

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the NFXF Consensus document “Assessment of Fragile X Syndrome” that should be shared with all therapists and psychologists evaluating children with FXS at https://fragilex.org/ understanding-fragile-x/fragile-x-syndrome/assessment-fxs.

Speech-Language Therapy Most individuals with FXS show delays in language development, many of which are clearly recognizable by the age of 2 years. Challenges often span many aspects of speech-language development targeted by speech-language therapists, including difficulties with receptive and expressive language, vocal production challenges, atypical patterns of speech (i.e., repetitive or perseverative speech, atypical intonation, and/or stereotyped phrases), and social communication difficulties. Speech-language therapy is typically a critical component of therapy programming from early intervention into adolescence, and given the strong visual memory skills in FXS should include consideration of additional approaches such as picture exchange or other forms of augmentative communication. Recent research studies have shown improved speech-language outcomes in FXS with therapy approaches such as parent-initiated language intervention that can be delivered by telehealth. Occupational Therapy Occupational therapy is typically a critical component in care of children with FXS both in the school setting and in private therapy targeting many other aspects of fine motor, self-care, self-regulation, and sensory processing challenges. Difficulty with sensory-based hyperarousal is often one of the largest challenges for individuals with FXS, often causing significant interruption in their ability to learn and manage their behavior across settings. As a result, occupational therapy is almost always part of the treatment plan to help families/caregivers and individuals with FXS to understand their unique sensory needs and sensitivities. Occupational therapists can help develop sensory diets (to provide sensory environments and activities optimal to each individual) so that hyperarousal, anxiety, and overall self-regulation can be maintained. Beyond sensory needs of FXS, occupational therapists also support development of self-care skills, social and play skills, fine motor skills and coordination, and adaptive community/work skills. Physical Therapy Motor coordination and delayed motor milestones are common in FXS, and physical therapists should be considered as a component of the treatment plan to target these areas. Many physical therapists also manage fitting and monitoring of orthotics if needed for pes planus that is affecting motor coordination or gross motor development. Special Education Special education services are almost always part of the treatment protocol given the typical cognitive profile in FXS that includes intellectual disability in almost all males and high rates of intellectual and learning disabilities in females. In US

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public schools special education services are provided based on legal guidelines set by individual states as they are for other disabilities, which can sometimes be difficult to navigate for families as they work with different systems of care and support. Similarly, different state and school districts will often have different approaches to how educational support is provided. This includes programs such as response to intervention, multitiered systems of support, inclusion programs, and the provision of individualized education plans. Sometimes additional advocacy for special education supports is needed for females with FXS who do not meet criteria for intellectual disability but instead have learning disabilities, ADHD, executive function deficits, autism, or social anxiety that will still benefit from supports and therapies in the school setting. More information on the specifics of approaches specific to educational supports in FXS can be found in the consensus documents entitled “Educational Guidelines for Fragile X Syndrome” for early childhood, elementary and middle/ high school students at https://fragilex.org/our-research/ treatment-recommendations/.

Behavioral Therapies Behavioral symptoms associated with FXS can interfere with daily life and limit opportunities in the community, causing challenges for the individual with FXS, as well as for their families, peers, and teachers. As a result, behavioral treatments in FXS are largely focused on the encouragement and teaching of appropriate prosocial behaviors and the reduction of maladaptive or inappropriate ones. Good behavioral intervention relies on consistent patterns of responding to specific behaviors across people and environments so coordination of the plan between parents and the full treatment team is needed to elicit the best outcomes. Applied behavior analysis (ABA) therapy is based on the science of learning and behavior, with overall goals of increasing behaviors that are helpful and decreasing behaviors that are harmful or interfere with learning or other important activities of an individual’s daily life. ABA is recognized as a first-line treatment for young children with autism, but the principles that inform ABA can be applicable for all individuals. Like all therapeutic interventions, ABA therapy is most effective when personally tailored to the individual. ABA is sometimes criticized because of the lack of flexibility in its application, and it is important to adapt the ABA approach for individuals with FXS. The most commonly overlooked factor is the crucial role anxiety and hyperarousal play in the behavioral challenges seen in many individuals with FXS. When this aspect is not taken into consideration when applying ABA-based principles, ABA interventions may lead to greater behavioral upset and increased anxiety. Good behavioral intervention for children with FXS needs to prioritize their unique learning style and approach teaching with these differences in mind. Some prominent considerations for successfully adapting ABA for FXS include: • Adjusting or softening the mass trial approach, especially when requiring a specific face-to-face response

• Honoring the tendency for individuals with FXS to learn simultaneously rather than sequentially for academic as well as self-care tasks and other community skills • Relinquishing the need to force eye contact to start social interactions • Allowing for substantial rapport building or social warm-up time to encourage anxiety and hyperarousal to become more regulated prior to systemic instruction or intervention Research into ABA adaptations for individuals with FXS is currently underway, though general treatment guidelines are accessible on the National Fragile X Foundation website.





Psychological and Social Skills Therapies Psychological therapies can target symptoms of anxiety, behavior, and development of social skills. Strategies such as cognitive-behavioral therapy (adapted to cognitive levels as needed) can be very helpful, especially in females with FXS who are often higher functioning and more verbal compared to males. Careful and slow desensitization approaches for fears/phobias, anxiety in new settings, and medical procedures can be helpful. Social skills groups should be considered for children with social challenges. While psychologists specializing in FXS are rare, identifying those experienced in disabilities and/or autism often have the skill set necessary to learn and adapt strategies for FXS. Medical Evaluations and Treatments in FXS Medical evaluations. Medical evaluations in infancy should include close evaluation for connective tissue abnormalities such as congenital hip dislocation, as well as addressing any feeding problems or reflux. In childhood tympanostomy tubes are often needed for recurrent otitis media, thus timely referral to otolaryngology and audiology assessments when ear infections begin is important. Ongoing evaluation for strabismus and vision is important. Evaluation for possible orthotics may be needed if pes planus and ankle pronation impact motor development or cause pain with activity. Neurology care should occur in the event of clear seizures, and electroencephalography should be considered for other atypical spells or movements. Seizures typically respond to standard anticonvulsant therapies. Physical examination should include close evaluation for related connective tissue abnormalities, including joint laxity, flat feet, hernias, scoliosis, and cardiac abnormalities. There is increased mitral valve prolapse, and cardiology should be consulted for any cardiac symptoms or arrythmias (Lozano, Azarang, Wilaisakditipakorn, & Hagerman, 2016). Macroorchidism can occur starting in puberty in males and typically does not require treatment, although examination is important as hydroceles, hernias, and other testicular abnormalities can still occur, and supportive underwear is a helpful recommendation for some males. Females often have typical menarche and menses. Hormonal treatments to lessen or inhibit menstruation should be considered for some who have challenges with managing hygiene or who have marked emotional symptoms with menses, and for pregnancy prevention.  

 

CHAPTER 28 Fragile X Syndrome and FMR1 Variants medications. Psychopharmacologic medications are a common component of the treatment plan for individuals with FXS from early childhood through adulthood, targeting associated concerns such as anxiety, ADHD, irritability/aggression, self-injury, and sleep. A national survey of over 1000 FXS families showed that 61% of males and 38% of females were being treated with at least one medication for behavioral symptoms. Generally, psychopharmacologic treatments follow the recommendations for other children with autism or developmental disabilities, including optimizing behavioral therapies and supports, considering medical symptoms that may contribute to behavioral symptoms, and conservative dosing when initiating treatment. Many children with FXS do well with alpha-agonists or stimulant medication for ADHD, selective serotonin reuptake inhibitors (SSRIs) for anxiety, melatonin or clonidine for sleep, and atypical antipsychotics for autism, mood instability, or aggression. Recent research shows safety in use of the SSRI sertraline at an earlier age than typically started in children with developmental disabilities, with placebo-controlled studies showing some benefit to motor, visual perceptual, and language outcomes in children 2 to 6 years of age (Hagerman & Hagerman, 2020). Targeted treatment medications. Neuroscience research on the effects of low FMRP has led to identification of specific neurobiologic abnormalities underlying the thin, immature dendritic spines and weakened connections of fragile X synapses. FMRP acts as a repressor of translation for many other proteins involved in synaptic development and function, and lack of FMRP leads to dysregulation of many proteins subsequently affecting neurotransmitter systems, including overactivity of glutamate pathways and underactivation of inhibitory GABA-mediated pathways. Medications targeting these pathways with a hope of improving synaptic functioning, cognitive outcomes, and behavioral symptoms are called targeted treatments (Erickson et al., 2017). These studies began in animal models in 2004, and many agents such as mGluR5 antagonists, GABA agonists, phosphodiesterase inhibitors, among others have been shown to improve synaptic morphology, seizures, memory, and anxiety in fragile X knockout mice. Human trials of targeted treatments began in 2005, and many compounds have been studied with variable results, although none yet with convincing results needed for US Food and Drug Administration (FDA) approval. Clinical trials of new agents with improved study designs are ongoing (Budimirovic et al., 2017). Many FDA-approved medications also target pathways impaired by the lack of FMRP, and research studies and off-label clinical use of these medications are ongoing in fragile X clinics. These include medications such as minocycline, metformin, trazodone, cannabidiol (CBD), and acamprosate. Parents of children with FXS will often inquire about off-label use of these and other targeted treatment medications, and it is important for the medical provider caring for patients with FXS to be aware of the current research on safety and efficacy of these agents (Hagerman & Hagerman, 2020). Psychopharmacologic

 

 

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FMR1 PREMUTATION–ASSOCIATED DISORDERS Premutation expansions (55–200 CGG repeats) are associated with elevated levels of FMR1 mRNA, which is the opposite of what occurs in FXS (>200 CGG repeats) where the gene is methylated and little or no mRNA is produced (see Fig. 28.1). Most individuals with the premutation are intellectually normal with normal FMRP production; however, the elevated mRNA can lead to clinical diagnoses called fragile X premutation–associated disorders (see later). Additional medical problems more common in premutation carriers than the general population include hypertension, seizures, fibromyalgia, migraines, hypothyroidism, and other autoimmune problems. At the upper end of the premutation range (>175 CGG repeats), the level of FMRP can be 30% to 50% lower, and features of FXS such as prominent ears or hyperextensible joints are common (Hagerman & Hagerman, 2020). The mechanisms of pathology in these conditions are currently being studied; however, known mechanisms include RNA toxicity where the elevated mRNA sequester proteins important for neuronal and mitochondrial function lead to enhanced oxidative stress. In some reports an abnormal protein FMRpolyG may be produced because of translation of the mRNA that does not begin at the AUG normal start site (RAN translation), so a repetitive polyglutamine tail is on the FMRP protein that is toxic to neurons. Premutationassociated conditions are important for the medical provider to recognize as they can play an important role in the understanding and management of a family with a child with FXS or with a premutation childhood disorder.

Fragile X–Associated Tremor Ataxia Syndrome FXTAS is a neurodegenerative disorder that occurs in approximately 40% of males and 15% of females with the premutation. FXTAS usually begins with tremor in the early 60s, and higher CGG repeat numbers are associated with earlier onset of symptoms (Hagerman & Hagerman, 2020). Balance problems or ataxia begin 1 or 2 years after tremor followed by memory and executive function deficits. Emotional problems such as frontal disinhibition, anxiety, or depression are common, and further cognitive decline into dementia is seen in 50% of males with FXTAS. Females develop FXTAS less frequently and less severely than males. The central nervous system develops white matter disease that involves the middle cerebellar peduncles (MCP sign) in 60% of males but only 10% of females. FXTAS is also associated with lower extremity neuropathy, autonomic problems, Parkinsonian features, mood lability, and chronic pain symptoms. FXTAS is caused by the elevated mRNA so those with a full mutation and no mRNA do not develop FXTAS. However, rare cases of FXTAS have been reported in those with the full mutation with methylation mosaicism and elevated mRNA levels. Premutation carriers with symptoms of FXTAS need to be evaluated by a movement disorder neurologist and should have magnetic resonance imaging (MRI). The finding of the MCP sign is diagnostic of FXTAS when tremor

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or ataxia occur. Other MRI features include white matter disease in the splenium of the corpus callosum and the periventricular area along with brain atrophy. The neuropathology of FXTAS includes eosinophilic intranuclear inclusions in neurons and astrocytes throughout the brain but also in peripheral neurologic and organ tissues (Hall et al., 2016).

Fragile X–Associated Primary Ovarian Insufficiency The premutation is the most common genetic mutation leading to early ovarian failure or menopause before age 40, a condition termed FXPOI. FXPOI occurs in 15% to 20% of women with the premutation, and an additional 20% experience menopause between 40 and 45 years of age (Noto, Harrity, Walsh, & Marron, 2016). Ovarian insufficiency is associated with fertility problems, and fragile X in a family is sometimes identified from infertility evaluations. Women with FXPOI should be referred for consultation with an obstetrician/ gynecologist related to potential hormonal evaluation and treatment. Women of all ages with the premutation desiring future pregnancies should be aware of the risk for FXPOI, and be referred to reproductive medicine for evaluation of ovarian reserve and discussion related to reproductive options.

Fragile X–Associated Neuropsychiatric Disorders FXAND is the most common set of disorders associated with the premutation, and the neuropsychiatric problems include depression, anxiety, obsessive-compulsive disorder, ASD, ADHD, insomnia, chronic pain, and chronic fatigue (Hagerman et al., 2018). Approximately 50% of those with the premutation can experience FXAND, and symptoms often start in childhood. Children with the premutation can present with ADHD, shyness, social anxiety, and sometimes ASD. Usually, however, children with the premutation do not have intellectual disability unless an additional genetic abnormality is found. In boys found to have the premutation through cascade testing of a family, only 8% have ASD and 38% have ADHD. In adults FXAND is a common problem, and approximately 50% of carriers experience significant anxiety and/or depression. This is important to recognize and refer for treatment in the mothers of fragile X children seen in developmental clinics as this can affect their ability to care for their child and family. Psychotic thinking with delusions and/ or hallucinations is less common but require prompt treatment if present. Problems of chronic pain are more common in female carriers who have fibromyalgia and in those who experience migraines or neuropathy associated with FXTAS. Usually FXAND symptoms of anxiety or depression respond well to SSRIs in childhood or adulthood, although treatment with a therapist is typically very helpful in addition to daily exercise (Hagerman & Hagerman, 2020).

GENETIC COUNSELING AND CASCADE TESTING

with variable implications for both nuclear and extended family members at risk for both full mutation and premutation-associated disorders and problems, while simultaneously processing a new diagnosis for the proband identified and implications for the individual’s and family’s future. It is also increasingly common that some female carriers are being incidentally identified during routine prenatal carrier screening in the absence of family history. Once an FMR1 mutation (pre or full) is identified in an individual, genetic counseling for the individual and family should ensue (McConkie-Rosell et al., 2005). Counseling should include solicitation of a detailed family history (3+ generation pedigree) to identify those at risk of carrying a premutation or full mutation, with targeted inquiry for male or female relatives with diagnoses or symptoms of: • Developmental delays, intellectual disability, learning disabilities, and/or special education supports • ASD and ADHD • Anxiety disorders or other mental health diagnoses • Females with primary ovarian insufficiency, infertility, irregular menses • Adults with Parkinson disease, tremors, ataxia, cognitive decline, psychiatric changes, dementia Genetic counseling should occur soon after a new diagnosis as there are often other females of childbearing age in the extended family, and the family itself may be interested in having additional children. Counseling should provide a detailed discussion about the diagnosis and management, as well as FMR1 inheritance, clinical presentation of all fragile X–associated disorders, reproductive options (as appropriate), guidance for sharing information with identified at-risk family members, family and community support resources, research opportunities, and referrals to medical and psychological providers as indicated.









RESOURCES FOR PROVIDERS AND FAMILIES A new diagnosis of FXS or associated disorder and its implications can be extremely difficult and emotional for individuals and families. It is common for parents to experience feelings of grief and guilt, as well as newly diagnosed adult patients to feel despair. Individual or family counseling can be helpful in processing these complex emotions and monitor for extreme grief. Parents of children with FXS often find significant support in connecting with other parents. Siblings of children with FXS also often need support. While there is currently no cure for FXS or associated disorders, families often find participation in advocacy efforts and/or research studies empowering. Various organizations are available to patients, families, and professionals: • The National Fragile X Foundation (NFXF; www.fragilex. org) serves patients, their families, and professionals by focusing on advocacy, community support, awareness, education, and research. • The NFXF Community Support Network (https://fragilex. org/community/) is a network of parent/family groups connecting families more locally to provide support throughout the country.



Genetic counseling for FXS and associated disorders is commonly multifaceted due to the multigenerational and inherited nature of FMR1 mutations. Families are frequently faced

 

CHAPTER 28 Fragile X Syndrome and FMR1 Variants

• Social networking sites, such as Facebook and Twitter, have dedicated fragile X groups. • The Fragile X Clinical & Research Consortium (FXCRC; https://fragilex.org/fxcrc-and-clinics/) is a national collaboration of dedicated fragile X clinics providing comprehensive consensus-based treatment recommendations (consensus documents) (https://fragilex.org/our-research/ treatment-guidelines/). • The FRAXA Research Foundation (www.fraxa.org) serves a primary goal of funding research to find a cure for FXS.





REFERENCES Budimirovic, D. B., Berry-Kravis, E., Erickson, C. A., Hall, S. S., Hessl, D., Reiss, A. L., … Kaufmann, W. E. (2017). Updated report on tools to measure outcomes of clinical trials in fragile X syndrome. Journal of Neurodevelopmental Disorders, 9, 14. https://doi.org/10.1186/s11689-017-9193-x Erickson, C. A., Davenport, M. H., Schaefer, T. L., Wink, L. K., Pedapati, E. V., Sweeney, J. A., … Berry-Kravis, E. (2017). Fragile X targeted pharmacotherapy: Lessons learned and future directions. Journal of Neurodevelopmental Disorders, 9, 7. https://doi.org/10.1186/s11689-017-9186-9 Hagerman, R. J., & Hagerman, P. (Eds.). (2020). Fragile X syndrome and premutation disorders: New developments and treatment. MacKeith Press. https://doi.org/10.1111/dmcn.14726 Hagerman, R. J., Protic, D., Rajaratnam, A., Salcedo-Arellano, M. J., Aydin, E. Y., & Schneider, A. (2018). Fragile X-associated

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neuropsychiatric disorders (FXAND). Frontiers in Psychiatry, 9, 564. https://doi.org/10.3389/fpsyt.2018.00564 Hall, D. A., Robertson, E., Shelton, A. L., Losh, M. C., Mila, M., Moreno, E. G., … O’Keefe, J. A. (2016). Update on the clinical, radiographic, and neurobehavioral manifestations in FXTAS and FMR1 premutation carriers. Cerebellum, 15(5), 578–586. https://doi.org/10.1007/s12311-016-0799-4 Lozano, R., Azarang, A., Wilaisakditipakorn, T., & Hagerman, R. J. (2016). Fragile X syndrome: A review of clinical managemen. Intractable & Rare Diseases Research, 5(3), 145–157. https://doi. org/10.5582/irdr.2016.01048 Martin, G. E., Ausderau, K. K., Raspa, M., Bishop, E., Mallya, E., & Bailey, D. B. (2013). Therapy service use among individuals with fragile X syndrome: Findings from a US parent survey. Journal of Intellectual Disability Research, 57(9), 837–849. https://doi. org/10.1111/j.1365-2788.2012.01608.x McConkie-Rosell, A., Finucane, B., Cronister, A., Abrams, L., Bennett, R. L., & Pettersen, B. J. (2005). Genetic counseling for fragile X syndrome: Updated recommendations of the National Society of Genetic Counselors. Journal of Genetic Counseling, 14(4), 249–270. https://doi.org/10.1007/s10897-005-4802-x Noto, V., Harrity, C., Walsh, D., & Marron, K. (2016). The impact of FMR1 gene mutations on human reproduction and development: A systematic review. Journal of Assisted Reproduction and Genetics, 33, 1135–1147. https://doi. org/10.1007/s10815-016-0765-6

29 Nervous System Elizabeth Troy and Padmini Palat

For additional material related to the content of this chapter, please see Chapters 25, 36, 39, 40, and 59.

VIGNETTE A 7-week-old term infant presented with signs of increased intracranial pressure, including fussiness, persistent downgaze, and rapidly increasing head circumference. Urgent brain magnetic resonance imaging (MRI) (Fig. 29.1A, B) revealed obstructive hydrocephalus secondary to webbing at the cerebral aqueduct. An endoscopic third ventriculostomy was performed but complicated by a hemorrhagic stroke (see Fig. 29.1C). A ventriculoperitoneal shunt was ultimately placed. The infant developed acute symptomatic seizures, which were treated with levetiracetam that was subsequently weaned at 3 months of age. Two months later the patient developed subtle seizures, described as facial grimace with gaze deviation up and to the right. An electroencephalogram confirmed infantile spasms with a background of hypsarrhythmia. The spasms were refractory to vigabatrin but resolved with adrenocorticotropic hormone. Repeat MRI (see Fig. 29.1D) demonstrated a well-functioning ventriculoperitoneal shunt as well as volume loss of the left-sided structures. At 2 years of age, the toddler remained seizure-free off medications. Right spastic hemiparesis delayed the child’s motor development, but the child was able to make consistent gains and ambulate with a gait trainer. The patient’s language was advanced for age, and social and language development was typical for age. The progress was attributed to timely diagnosis of congenital hydrocephalus, rapid recognition of seizures, and early initiation of medical treatment and intensive therapy. This chapter reviews congenital malformations and childhood vascular diseases of the brain in the context of typical neurodevelopmental anatomy. The clinical vignette illustrated how a thorough history and physical examination led to the appropriate diagnosis and treatment.

The first major step in human embryonic brain development involves the formation of the neural plate, which occurs by day 20 of conception. The neural plate subsequently folds over to form the neural plate. The anterior end of the neural tube forms brain vesicles that forms brain vesicles that represents the primary organization of the central nervous system (CNS). Discernible patterns of organization of the sensorimotor neocortex, diencephalon, midbrain, hindbrain, and spinal cord are present by the end of the embryonic period at 8 completed weeks. The primitive ventricular system is lined by neural progenitor cells in a transient ventricular zone. Neuron production in this zone begins at day 42. Different populations of neurons migrate away from the proliferative regions of the ventricular zone to form gray matter in many regions of the brain. Much of the fetal period from the ninth week to term is characterized by ongoing neuronal production, migration, and differentiation. Neuronal axons and dendrites form pathways that ultimately make up the white matter of the brain. Major nerve fiber pathways are established by the end of the prenatal period. The proliferation and migration of glial progenitors continue for an extended period after birth. Myelination of the brain is mostly a postnatal process that continues well into the second and third years of life.

NEUROANATOMY The brain is the most complex human organ. Historically the study of brain disease by clinicians and neuropathologists contributed to mapping of different brain functions to specific anatomic regions. Recent advances in genetics and the advent of sophisticated functional brain imaging have added to this evolving process. Clinical medical practice continues to rely on discerning normal from abnormal brain function by means of a neurologic examination.

PRENATAL BRAIN DEVELOPMENT

Supratentorial Anatomy

The adult human brain consists of more than 100 billion neurons with 60 trillion synapses, as well as a rich network of nonneuronal glial cells that have a supportive function. Brain development begins in the third week of gestation, extending at least through late adolescence. This process encompasses a complex series of events operating within a genetically determined framework adapting to a constantly changing milieu. Disruption of either gene expression or environmental input can adversely affect brain development.

It is useful to think of the brain as contained in two compartments separated by a layer of dura mater known as the tentorium. The supratentorial brain consists of the cerebral hemispheres, thalami, basal ganglia, and hypothalamus. Each cerebral hemisphere has an outer cortex of neuronal gray matter folded to form sulci and gyri, with an inner white matter of connecting fibers transmitting information between the cortex and deeper brain structures. Each cerebral hemisphere controls the function of the contralateral half of the body. There are four

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A

B

C

281

D

Fig. 29.1 Congenital hydrocephalus (A, B); hemorrhagic stroke (C); volume loss following hemorrhagic stroke (D).  

Fig. 29.2 Lateral view of cerebral cortex. (From https://teachmeanatomy.info/neuroanatomy/structures/cerebrum)  

lobes of the cerebral cortex (Fig. 29.2). The frontal lobe controls voluntary movements, language, and cognitive and executive function. The speech area is located in the left frontal lobe in most individuals, hence the left hemisphere is considered dominant. The parietal lobe is the sensory receptive area and transmits spatial information to the motor cortex. The temporal lobe controls memory, language comprehension, emotional processing, and auditory function. The occipital lobe is responsible for visual functions, including object and face recognition, visuospatial processing, depth perception, and color determination. The two sides of the cerebrum communicate through the corpus callosum, which is a broad midline tract of white matter between hemispheres. The thalami function as relay stations for sensory and motor signals and regulate consciousness and alertness. The hypothalamus controls the autonomic nervous system and works in conjunction with the pituitary gland to mediate endocrine functions. The basal ganglia initiate and integrate movements. The pineal gland regulates circadian rhythm and influences pituitary sex hormone secretion.

Infratentorial Anatomy The infratentorial brain consists of the cerebellum and brainstem that occupy the posterior fossa. The cerebellum is composed of two cerebellar hemispheres and the midline vermis. The brainstem continues downward into the spinal cord through the foramen magnum and includes the midbrain, pons, and medulla (Fig. 29.3). The cerebellum functions in

Fig. 29.3 Ventricular system Neuroanatomy. An Illustrated Colour Text. Crossman, Alan R, PhD DSc; Neary, David, MD FRCP. Published January 1, 2020. Pages 55–50. 2020. Fig. 6.2 Median sagittal section of the brain showing the ventricular system.  

coordination and motor planning, with the laterally placed cerebellar hemispheres controlling ipsilateral limbs and the midline vermis the neck and trunk. In addition, the role of the cerebellum in cognitive function is being increasingly recognized. The midbrain controls eye movements and processes auditory and visual signals. The pons has nuclei that regulate respiration and sleep in addition to mediating the functions of several cranial nerves. The medulla oblongata controls vital functions such as respiration and heart rate. The cranial nerves (CN) have been named for their functions and are designated by Roman numerals. CNI (olfactory nerve) and CNII (optic nerve) mediate smell and vision, respectively, and are located above the tentorium. CNIII, CNIV, and CNVI (oculomotor, trochlear, and abducens nerves) control eye movements with CNIII also responsible for accommodation and pupillary constriction. CNIII and CNIV emerge from the midbrain; CNV, CNV1, CNVII, and CNVIII from the pons. CNV (trigeminal nerve) is responsible for facial sensation and motor control of masticatory muscles. Other facial muscles are controlled by CNVII (facial nerve), which also carries taste fibers from the anterior two-thirds of the tongue and supplies salivary and tear

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glands. CNVIII (vestibulocochlear nerve) has auditory and vestibular functions. CNIX (glossopharyngeal nerve) controls palatal sensation and taste in the posterior one-third of the tongue. CNX (vagus nerve) has a long course with a wide range of function, including motor control of the pharynx, palate, and larynx; sensory innervation of larynx, pharynx, heart, and abdominal viscera; parasympathetic supply to smooth muscles of the trachea and bronchi; and control of heart rate. CNXI (accessory nerve) controls neck and shoulder musculature, and CNXII (hypoglossal nerve) is the motor nerve of the tongue muscles. CNIX, CNX, CNXI, and CNXII all originate in the medulla.

Spinal Cord and Peripheral Nervous System The spinal cord extends from the foramen magnum to the first lumbar vertebra. It contains central gray matter consisting of spinal neurons surrounded by white matter made of ascending sensory and descending motor tracts. The peripheral nervous system includes the spinal nerves and the autonomic nervous system. There are 31 pairs of spinal nerves that are segmentally organized and named in relation to vertebral bodies. C1 to C7 cervical spinal nerves emerge from the spinal cord above their corresponding vertebrae, C8 and the remaining spinal nerves exit below their vertebral levels. The spinal nerves divide into branches and then organize into peripheral nerves with motor and sensory functions. The sympathetic and parasympathetic pathways of the autonomic nervous system control involuntary functions. The sympathetic pathways originating in the hypothalamus descend to the spinal cord for distribution to the effector organs via the peripheral nervous system. The parasympathetic pathways are mediated by cells in the brainstem and sacral spinal cord and also reach their destination via peripheral nerves.

Meninges The meninges are composed of three membranes, organized from superficial to deep layers as dura mater, arachnoid mater, and pia mater. These membranes are present intracranially and travel the length of the spinal canal. The dura mater is a thick fibrous structure composed of two layers—periosteal and meningeal. Dural venous sinuses are present between these two layers. The arachnoid membrane is a thin membrane deep to the dura mater. Invaginations of the arachnoid membrane, known as arachnoid granulations, traverse the dura mater and facilitate absorption of cerebrospinal fluid (CSF). The subarachnoid space lies between the arachnoid and pia mater, and CSF and bridging veins are present here. The pia is a thin delicate membrane that adheres to the surface of the brain and spinal cord. The pia and arachnoid layers are collectively referred to as the leptomeninges. The meninges receive sensory innervation predominantly via terminal branches of the trigeminal nerve.

Cerebrovascular Circulation The intracranial arterial system is divided into an anterior and a posterior circulation with a Circle of Willis anastomosis (Fig. 29.4). The anterior circulation is supplied by the internal

Fig. 29.4 Intracranial arterial circulation. From Introdution to vascular ultrasonography expert consult. 2012.  

carotid arteries, and the posterior circulation by the vertebral arteries. The intracranial venous system is composed of dural venous sinuses as well as a collection of smaller veins (Fig. 29.5).

Cerebrospinal Fluid Circulation CSF is produced by the choroid plexus and circulates within the ventricular system composed of four ventricles–lateral (right and left), third, and fourth ventricles. The lateral ventricles form the frontal, occipital, and temporal horns. They drain via the foramen of Monro into the third ventricle, which is located between the thalami. CSF then traverses the cerebral aqueduct into the fourth ventricle, which lies between the dorsal brainstem and cerebellum. The fourth ventricle drains via the foramina of Luschka and Magendi into the subarachnoid space around the spinal cord. CSF then recirculates to ultimately be reabsorbed into the venous system via arachnoid granulations.

NEUROLOGIC HISTORY AND PHYSICAL EXAMINATION History In child neurology, the history and physical examination are vital to reaching the proper diagnosis. It is essential to include the child in the interview while simultaneously engaging the parents or caregivers to provide supportive information. The initial portion of the history is driven by the chief complaint. Chronology is important, as distinguishing between acute, chronic, or progressive conditions directs the acuity of the workup. In contrast, many neurologic conditions are paroxysmal, such as spells, headaches, or abnormal movements. The description of these episodes, including details before and after, leads toward a diagnosis. For instance, tunnel vision and head rush prior to an event are suggestive of vasovagal syncope, and an unusual smell or sense of déjà vu

 

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283

Fig. 29.5 Intracranial venous circulation. (From Greenlee, J. E. [2010]. Suppurative intracranial thrombophlebitis. In Handbook of Clinical Neurology [vol. 96, pp. 101–123]. Elsevier. https://doi.org/10.1016/S0072-9752(09)96008-0)  

can be indicative of temporal lobe seizures. For abnormal movements, an urge to move followed by release of tension is supportive of a motor tic, but an early-morning jerk resulting in dropping an object is suggestive of a myoclonic seizure. Presence of symptoms during sleep is also helpful. Seizures and dystonia persist during sleep while tics, stereotypies, and chorea abate. Triggers, worsening or alleviating factors, and degree of functional impairment or injury are other valuable features. A birth and developmental history should be obtained for every pediatric patient. Inquire about the course of the pregnancy, including the presence of fever, sick symptoms, or vaginal bleeding; medication or substance use; and gestational age at time of delivery. Assess whether a neonatal intensive care unit stay was necessary and, if so, the interventions that were required. Breech presentation, decreased movements, or failure to progress are suggestive of a neuromuscular disorder. Fetal hiccups could indicate seizures in utero. A complete medical history should also be obtained. Congenital heart disease can raise suspicion of other malformations. Risk factors for brain injury, such as intracranial infection, head injury, or stroke, should be elicited. All domains of development, including gross and fine motor, language, cognitive, and social, should be evaluated. For younger children, obtain a course of developmental milestones, including age at sitting, walking, first word, and establishment of hand preference. Discuss whether they have been getting physical, occupational, speech, behavioral, and other therapies. For older children it is important to inquire

on school performance. A variety of academic or psychiatric conditions such as learning disability, intellectual disability, anxiety and/or depression, and attentional problems are comorbidities of neurologic diagnoses. A social history can provide context to the family and home structure. A thorough review of systems to investigate for other system involvement is useful. Discuss the child’s growth as well as safety of chewing and swallowing. Choking or coughing following liquids or solids is worrisome for a neuromuscular process. Evaluate for hearing or vision concerns. Discuss whether the child needs breathing assistance with special apparatus or supplemental oxygen. Bowel or bladder difficulties could be suggestive of spinal cord pathology. All patients with neurologic conditions are at risk for sleep problems, so difficulty with sleep onset, nighttime awakenings, sleepwalking, or other movements during sleep should be elicited. Lastly, it is important to discuss family history. Many neurologic diseases are genetic in etiology, and it is helpful to distinguish between inherited and non-inherited conditions. Drawing a pedigree can identify possible patterns of inheritance.

General Examination A complete examination always begins with a quality general physical examination. Review vital signs and growth parameters with attention to the head circumference. If macrocephaly or microcephaly is identified, measurement of parents’ heads can indicate a familial component. Observe the head shape. Plagiocephaly is suggestive of torticollis. Scaphocephaly or

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brachycephaly could indicate craniosynostosis. Atypical facial features, such as frontal bossing, eye or ear position, or midface hypoplasia raise suspicion for an underlying genetic condition. A skin examination looks for neurocutaneous stigmata, such as café au lait spots. On cardiac examination, auscultate the heart rhythm and for presence of a murmur. On the abdominal examination, palpate for hepatosplenomegaly, which can be seen with a storage disorder. Pectus excavatum is a sign of hypotonia. Decreased range of motion of major joints is suggestive of increased tone. Other atypical

features such as clinodactyly or single palmar crease indicate an underlying genetic syndrome.

Neurologic Examination The neurologic examination begins from the instant the provider enters the clinic room. Many details are gleaned from observation of children and adolescents, but this is most true in infants and toddlers or children with autism spectrum disorder or other neurodevelopmental conditions. The details of the neurologic examination are provided in Table 29.1.

TABLE 29.1 Neurologic Examination  

Examination Maneuvers

Pathology

Mental status

Level of alertness, orientation, attention, follow commands

Global brain for cognitive abilities, frontal lobe for executive function

Speech

Content, quality, cadence of speech, conversation, naming objects, repetition

Cerebellar function Aphasia: frontal or temporal lobes

Cranial Nerves Optic nerve (II)

Visual fields by bringing toys/fingers into periphery, visual acuity, fundoscopy, afferent of pupillary light reflex

Visual pathway is from retina > optic nerve > optic tracts > occipital lobe

Oculomotor (III), Trochlear (IV), Abducens (VI)

Fixation and tracking in an infant Ability to follow an object in all directions Efferent of pupillary light reflex (CNIII)

Midbrain function Lateral gaze palsy is suggestive of increased intracranial pressure

Trigeminal (V)

Sensation in the upper, middle, and lower face: muscles of mastication

Pontine function

Facial (VII)

Upper face: eyebrow raise, eye closure Lower face: smile, puff of cheeks Taste to anterior 2/3 of tongue

Upper motor neuron: lower face only; lower motor neuron: upper and lower face Pontine function

Vestibulocochlear (VIII)

Hear finger rub or clap Balance

Pontine function

Glossopharyngeal (IX)

Afferent for gag reflex; taste posterior 1/3 of tongue

Medullary function

Vagus (X)

Efferent for gag reflex; parasympathetic to heart and gastrointestinal tract

Medullary function

Accessory (XI)

Shoulder shrug (trapezius); turn of head to the left and right (sternocleidomastoid)

Medullary function

Hypoglossal (XII)

Protrude tongue and move side to side

Upper motor neuron: deviates contralaterally; lower motor neuron: deviates ipsilaterally

Motor

Bulk: overall size of muscles Tone: passive range of motion of all limbs Strength: confrontational testing or observation of functional movements

Upper motor neuron: increased tone and weakness; lower motor neuron: decreased tone and weakness

Sensation

Light touch, pinprick, temperature, vibration, and proprioception

Large fiber/posterior column of cord: ↓ proprioception/vibration Small fiber: ↓light touch

Reflexes

Biceps, brachioradialis, triceps, pateller, and Achilles Pathologic: Hoffman, suprapubic, crossed adductor

Upper motor neuron: hyperreflexia and pathologic reflexes Lower motor neuron: hyporeflexia

Coordination

Finger taps, finger to nose, heel to shin

Cerebellar function

Gait

Stance; casual gait; toe, heel, and tandem walk

Assessment of cerebellar function, vestibular system, strength, and large fiber nerves

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TABLE 29.2 Primitive Reflexes Based on Description and Timing  

Reflex

Description

Appears

Disappears

Moro

Infant’s arms abduct with startle

28 wk gestation

3–6 mo

Palmar

Infant’s fist closes into grasp with touch of palm

28 wk gestation

3–4 mo

Stepping

Infant appears to walk when held upright

32 wk gestation

2 mo

Tonic neck

With infant’s head turned to one side, ipsilateral arm extends and contralateral arm flexes

Birth

4–6 mo

Parachute

When lowered to ground, infant will extend arms forward to prop

6–7 mo

Persists

Techniques in Infants Most of the neurologic examination in an infant is observational, but there are a host of examination features that are unique to the infant period. Neonates naturally have a flexed posture. A frog-leg position, slip through with vertical suspension, or inability to maintain head at neutral with horizontal suspension are signs of hypotonia. Opisthotonos or early rolling from back to belly are signs of hypertonia. Primitive reflexes can also be assessed (Table 29.2). Asymmetry in these reflexes can be a subtle sign of weakness.

Telehealth The COVID-19 pandemic has ushered in an expansion of telemedicine. This opportunity for patient care can be immensely valuable for the clinician. A history can be obtained as easily via telehealth as in person, and it is valuable to observe the patient at home as social stressors can be more apparent. Children with autism spectrum disorder or other neurodevelopmental conditions typically are more comfortable in their home rather than in a new clinic environment. Challenges include difficulty for a young child to interact with a screen or patients in whom a fundoscopic or neuromuscular examination is required.

Indications for Imaging Chief complaint, history, and physical examination guide the decision to obtain head imaging, and acuity of symptoms influences the modality of computed tomography (CT) or MRI. In head trauma, CT head should be obtained for any patient who has altered mental status or signs of skull fracture and should be considered for patients with a severe mechanism of injury, loss of consciousness, severe headache, or vomiting (Kuppermann et al., 2009). For developmental delay, imaging is included in first-tier testing if the patient has neurocutaneous stigmata or a focal neurologic deficit such as spastic hemiparesis. MRI brain is considered standard of care in epilepsy unless patient has a typical presentation for a well-described pediatric epilepsy syndrome such as childhood absence epilepsy. If red flags are observed with headache, then head imaging is required.

CENTRAL NERVOUS SYSTEM MALFORMATIONS Malformations of the CNS, comprising the brain and spinal cord, account for a significant proportion of congenital anomalies. A 2019 multicenter population-based European study

identified 9.8 cases of cerebral malformations per 10,000 births (Morris et al., 2019). Spina bifida has a marked geographic variation in incidence ranging from 0.77 to 6.1 per 1000 live births in South Africa to an estimated 3.5 per 1000 live births in the United States (Ntimbani, Kelly, & Lekgwara, 2020). Brain malformations are an important cause of developmental delay, intellectual disability, motor impairment, and intractable childhood epilepsy. Spinal dysraphism can impact bladder and bowel function as well as mobility. Genetic factors as well as the intrauterine environment influence CNS development. Chromosome abnormalities and single gene disorders have been identified in many CNS malformations. Prenatal exposure to certain toxins such as alcohol, drugs such as retinoic acid and valproate, virus infections such as cytomegalovirus, hyperthermia, ionizing radiation, trauma, maternal metabolic dysfunction, and nutritional factors have been linked to a variety of prenatal brain and spinal cord disorders. The timing of exposure of the fetal brain and spinal cord to an external agent appears critical (e.g., spina bifida results from exposure to an adverse agent between day 21 and day 28 of gestation). A single agent can cause a spectrum of brain abnormalities, as in the case of prenatal Zika virus infection leading to microcephaly, parenchymal calcifications, defective neuronal migration, corpus callosum abnormalities, ventriculomegaly, and posterior fossa abnormalities (VHP et al., 2020). Conversely, there can be an overlap of causes for the same malformation, such as agenesis of corpus callosum that can be due to fetal alcohol exposure or a variety of genetic or neurometabolic disorders. The 2019 European population study of congenital brain malformations showed that 48% of all cases had an isolated cerebral anomaly, 25% had associated noncerebral anomalies, and 27% were identified with a chromosomal abnormality or a known genetic or teratogenic syndrome (Morris et al., 2019). Major advances in clinical genetics and improved imaging with MRI brain, including fetal MRI imaging, are leading to earlier and more accurate diagnoses of CNS malformations. Precise pathologic mechanisms may not be identified in an individual patient due to the complex interplay of genes with metabolic and environmental factors, but genetic counseling should be offered once an anatomic abnormality is identified on brain imaging. A search for an identifiable genetic cause can include karyotype, chromosome microarray, targeted gene panels, and whole exome or genome sequencing. Details about genetic testing are discussed in Chapter 25.

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An exact diagnosis can help to determine the recurrence risk in subsequent pregnancies, and this allows appropriate reproductive counseling. Early detection of a malformation can lead to intervention such as prenatal closure of spina bifida and shunt surgery for congenital hydrocephalus. Brain and spinal cord malformations caused by adverse intrauterine conditions may be preventable. Neuroimaging with brain MRI is the most common diagnostic tool used to identify CNS malformations in clinical practice, and this section uses MRI to illustrate many of these conditions. It is important to recognize the broad range of neurodevelopmental effects in many of these disorders, keeping in mind that a clinically insignificant finding may be discovered when a patient undergoes neuroimaging for head trauma or other reasons. CNS malformations have been classified in various ways. Commonly used systems divide malformations according to the anatomic area of involvement as well as embryologic underpinnings, often incorporating genotype correlations.

Forebrain and Cerebral Cortex Holoprosencephaly Holoprosencephaly is a severe defect that refers to incomplete division of the forebrain. The most severe form is alobar holoprosencephaly where there is no separation of the cerebral hemispheres, the thalami are fused, and there is a single large ventricular cavity (Fig. 29.6). The cerebellum and brainstem are normally formed. This malformation is typically associated with severe facial and ocular abnormalities. Congenital heart disease and polydactyly may also be noted. Severe intellectual disability, rigidity, intractable seizures, apnea, growth hormone deficiency, diabetes insipidus, and temperature instability are common neurologic manifestations. Severe cases are generally identified early, though incomplete subtypes may be detected only at a later age. Genetic disorders are identified in 25% to 50% cases (Tekendo-Ngongang, Muenke, & Kruszka, 2020). These include trisomy 13 (the most common genetic cause), trisomy 18, other chromosome deletions or duplications, monogenic disorders

A

Fig. 29.6 Alobar holoprosencephaly.  

such as Smith-Lemli-Opitz syndrome, and several nonsyndromic single-gene abnormalities such as sonic hedgehog gene mutations (Dubourg, Kim, Watrin, , Tayrac, de, Odent, David, & Dupé, 2018). Maternal diabetes mellitus is another prenatal risk factor. Any child with holoprosencephaly deserves a full genetic evaluation so that appropriate counseling may be offered.

Agenesis of Corpus Callosum The corpus callosum is the largest interhemispheric white matter tract in the brain and is formed between gestational weeks 13 and 19. Agenesis of the corpus callosum (ACC) can occur as an isolated finding on MRI (Fig. 29.7) but is more commonly

B

Fig. 29.7  A, typically formed corpus callosum; B, agenesis of corpus callosum.

 

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associated with other disorders of brain development. Partial ACC or hypoplasia of corpus callosum is more commonly seen than complete agenesis. Neurologic findings and developmental disabilities are understandably diverse, ranging from minimum neurologic abnormalities in isolated ACC to more severe problems such as seizures, intellectual disabilities, and motor dysfunction. Deficits in problem solving and social skills as well as autism spectrum disorder can occur. A large number of genetic causes have been described, including chromosomal syndromes, copy number variations, and pathogenic variants of single genes (Edwards, Sherr, Barkovich, & Richards, 2014). Abnormal development of the corpus callosum has been noted in several enzyme deficiencies affecting cellular metabolism, including pyruvate dehydrogenase deficiency and fumarase deficiency. Disorders of cholesterol synthesis such as Smith-Lemli-Opitz syndrome and desmosterolosis particularly affect corpus callosum formation. A higher rate of ACC has been reported in individuals with fetal alcohol syndrome, a finding of significant public health importance. Interestingly a cause has not been identified in Aicardi syndrome, the clinically well-characterized triad of ACC, chorioretinal lacunae, and infantile spasms occurring in girls.

Septo-Optic Dysplasia Septo-optic dysplasia encompasses a the classical triad of agenesis of the septum pellucidum and/or corpus callosum, hypoplasia of the hypothalamic-pituitary axis, and optic nerve hypoplasia. At least two of the three criteria are required for diagnosis. It is one of the top causes of congenital vision loss in developed countries. Neuroendocrine disturbance including growth hormone deficiency and diabetes insipidus may result, and a full endocrinology evaluation is warranted. The presence of additional brain malformations is often referred to as septo-optic dysplasia spectrum disorder, which increases the severity of neurologic manifestations such as epilepsy, spasticity, and intellectual disability. Septo-optic dysplasia is usually a sporadic disorder, but familial cases have been described. A combination of prenatal environmental factors and genetic predisposition appears to play a causative role (Ganau, Huet, Syrmos, Meloni, & Jayamohan, 2019).

Lissencephaly Lissencephaly, meaning “smooth brain,” is caused by failure of neuronal migration. Only four of the six layers of cerebral cortex are present. Imaging studies reveal a thickened cortex and paucity of sulci (Fig. 29.8). Enlarged lateral ventricles are noted. Subcortical band heterotropia is a related condition where abnormal bands of neurons are seen beneath a normal cortex. Hypotonia, profound global developmental delays, microcephaly, and intractable seizures are characteristic of lissencephaly. Infantile spasms develop in 35% to 85% of children with classic lissencephaly (Di Donato et al., 2017). Seizures are often intractable, and many patients have Lennox-Gastaut syndrome. Life expectancy is lowered by feeding difficulties that include gastroesophageal reflux and aspiration, epilepsy, and pneumonia.

287

Fig. 29.8 Lissencephaly.  

Lissencephaly is a genetically heterogenous disorder. Classical lissencephaly is due to pathogenic changes in the LIS1 gene. DCX pathogenic variant is X-linked and causes lissencephaly in hemizygous males and subcortical band heterotropia in heterozygous females. Multiple congenital anomaly syndromes with lissencephaly include Miller-Dieker syndrome, Baraitser-Winter syndrome, and X-linked lissencephaly with abnormal genitalia.

Polymicrogyria Polymicrogyria (PMG) is one of the most common brain malformations, accounting for 20% of all disorders of cortical development (Stutterd, Dobyns, Jansen, Mirzaa, & Leventer, 2018). In PMG, cortical gyri are small, crowded, and too numerous (Fig. 29.9). The Sylvian fissures are frequently affected. Clinical findings in PMG are variable, with developmental issues ranging from learning problems to intellectual disabilities. A variety of uni- or bilateral motor deficits and tone abnormalities ranging from spasticity to hypertonia with hyperreflexia may be seen. Epilepsy is common. Bilateral perisylvian PMG results in pseudobulbar palsy with dysphagia along with failure to develop expressive speech, referred to as congenital bilateral perisylvian syndrome. PMG can result from intrauterine infection, vascular disruption, and toxic, metabolic, and genetic causes. More than 40 contiguous-gene or single-gene disorders have been associated with PMG. Recognizable syndromes with other clinical features include DiGeorge syndrome, 1p36 deletion, megalencephaly-capillary malformation (MCM), or megalencephaly- polymicrogyria-polydactyly-hydrocephalus (MPPH). Metabolic diseases such as Zellweger spectrum disorder and mitochondrial disorders can cause PMG. PMG has also been described in monochorionic twin pregnancies, usually associated with intrauterine co-twin death and twin-to-twin

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Fig. 29.10 Schizencephaly: cleft in right cerebral hemisphere extending to midline.  

Fig. 29.9 Polymicrogyria: excessive folding of right cerebral cortex.  

transfusion syndrome. Congenital cytomegalovirus infection is a well-known etiology, and additional features such as microcephaly, chorioretinitis, and intracranial calcifications can occur. More recently, congenital Zika syndrome virus has been implicated as a cause.

Schizencephaly Schizencephaly is a specific pattern of PMG characterized by uni- or bilateral clefts on the cortical surface associated with gray matter extending from the cortical surfaces to the ventricular cavity (Fig. 29.10). In closed-lipped schizencephaly the cleft walls are opposed. Open-lipped schizencephaly is associated with a prominent CSF cleft and may be difficult to differentiate from a porencephalic cyst, the latter implying cortical destruction from vascular or infectious insults.

Neuronal Heterotopia Neuronal heterotropia is caused by abnormal neuronal migration with failure of neurons to reach their destination in the cerebral cortex and can result in epilepsy. It can be recognized on brain MRI as single or multiple nodules lining the lateral ventricles of the brain, or subcortical bandlike or discrete rests of gray matter within otherwise normal white matter (Fig. 29.11).

Focal Cortical Dysplasia Focal cortical dysplasia consists of areas of abnormal brain anatomy with neuronal dyslamination and abnormal cell types. Focal cortical dysplasia may be asymptomatic or can result in focal onset epilepsy sometimes manifesting only in later life. Not all focal cortical dysplasias are detectable on

Fig. 29.11 Neuronal heterotopia: areas of gray matter left periventricular white matter (right).  

brain MRI and are sometimes diagnosed only by microscopic examination after epilepsy surgery.

Posterior Fossa Dandy-Walker Malformation Dandy-Walker malformation refers to hypoplasia and anticlockwise rotation of the cerebellar vermis with cystic dilation of the fourth ventricle (Fig. 29.12). Hydrocephalus is

 

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289

Fig. 29.13 Pontocerebellar hypoplasia.  

Fig. 29.12 Dandy-Walker malformation.  

frequently associated and is often the presenting feature. Other brain malformations occur in more than half the cases. Extracranial abnormalities are often seen, including congenital heart disease, syndactyly, and polycystic kidneys. Involvement of the cerebellum and brainstem typically cause motor delays, hypotonia, and abnormal eye movements. Cognitive delays or epilepsy are seen if there are associated cortical malformations. Patients with Dandy-Walker syndrome often require shunting of hydrocephalus or of the posterior fossa cyst. Prognosis is variable and is worse if there are associated intracranial or extracranial manifestations. Chromosomal abnormalities occur in approximately 50%, most frequently trisomy 18, trisomy 13, and triploidy. Other causes include teratogens, alcohol, maternal viral infection and diabetes, and a few single-gene disorders (Haddadi, Zare, & Asadian, 2018).

Pontocerebellar Hypoplasia Pontocerebellar hypoplasia refers to reduced volume of the cerebellum and pons (Fig. 29.13) and is typically associated with severe neurologic symptoms. Many genetic causes have been identified, including tubulinopathies (van Dijk, Baas, Barth, & Poll-The, 2018). Most cases are inherited in an autosomal recessive manner. Some pontocerebellar hypoplasia subtypes cause progressive atrophy, particularly of the pons, and could be subsumed under the category of neurodegenerative brain disease of prenatal onset. Structural brainstem abnormalities can occur in congenital genetic muscle dystrophies such as Fukuyama disease. Joubert syndrome is a genetic disorder with a distinctive cerebellar and brainstem malformation on brain imaging referred to as the molar tooth sign, with associated episodic breathing irregularity and hypotonia. Prematurity with gestational age less than 32 weeks has also been associated with varying degrees of cerebellar hypoplasia.

5 mm or more below the foramen magnum (Fig. 29.14). It can be associated with syringomyelia (central spinal canal dilatation) or bony abnormalities of the skull base. Symptomatic Chiari I usually presents in adolescents and adults, less commonly in children. The most common features are occipital headache and cervical pain. Infants and young children can have excessive crying and irritability due to pain, but are more likely to be diagnosed when they develop signs of brainstem dysfunction such as central sleep apnea or feeding difficulties. Other symptoms of Chiari I include hydrocephalus or features of spinal cord dysfunction. Surgical management is undertaken in symptomatic cases, but over 93% of Chiari I cases are benign and do not need intervention. Chiari I is generally congenital but can be acquired in a variety of disorders. Chiari II refers to a combination of abnormalities including a small posterior fossa with low-lying fourth ventricle beaking of the tectal plate, aqueductal stenosis resulting in hydrocephalus, and low-lying cerebellum and vermis (Fig. 29.15). There is almost always an associated meningomyelocele, though some babies may have a tethered or even normal spinal cord.  

Chiari I to IV Chiari I the most common Chiari malformation, seen in 0.6% of pediatric brain MRI studies (McClugage & Oakes, 2019). It refers to downward displacement of cerebellum and tonsils

Fig. 29.14 Chiari I malformation.  

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Fig. 29.15 Chiari II malformation.  

Fig. 29.16 Arachnoid cyst in right middle cranial fossa.  

Chiari III refers to an occipital encephalocele with associated herniation of the cerebellum and brainstem through an unfused upper cervical spinal canal, and it results in severe neurologic deficits. Chiari IV refers to cerebellar hypoplasia.

Cerebrospinal Fluid Pathways Hydrocephalus Hydrocephalus has an estimated prevalence of 1.1 per 1000 infants (Tully & Dobyns, 2014) and can be congenital or acquired. Congenital hydrocephalus (Fig. 29.1) is a frequent feature of spina bifida. Dandy-Walker malformation can occur as well as several other brain malformations, including holoprosencephaly, Aicardi syndrome, ACC, lissencephaly, and periventricular heterotropia. The large ventricular size can be detected on prenatal ultrasound or MRI. These babies are often born with large heads, and examination may reveal bulging anterior fontanelle and separated cranial sutures. Surgical interventions such as placement of a ventriculoperitoneal shunt are often necessary. Congenital hydrocephalus can be due to prenatal infections or a variety of other causes such as an unrecognized intrauterine microhemorrhage. Aqueductal stenosis can be X-linked due to a pathogenic variant in the L1CAM gene, but most of the underlying genes resulting in congenital hydrocephalus are still unknown.

Arachnoid Cyst Arachnoid cyst is a developmental condition characterized by entrapped CSF (Fig. 29.16). It is a common finding on incidental brain imaging and is usually asymptomatic, though seizures or signs of raised intracranial pressure can occur in some children.

Brain Size Megalencephaly Megalencephaly refers to brain size and volume greater than 2 SD for age and is usually reflected by a large head size (macrocephaly). In anatomic megalencephaly, the increase in the  

Fig. 29.17 Right hemimegalencephaly.  

size or number of brain cells is due to abnormal neuronal development. This can be associated with a range of developmental disabilities. Hemimegalencephaly refers to increased size of one side of the brain (Fig. 29.17). It generally results in intractable seizures and severe neurologic disabilities. Megalencephaly can be the result of pathogenic changes in the mTOR pathways such as the PTEN hamartoma tumor syndrome, tuberous sclerosis, and neurofibromatosis type 1. Other recognizable syndromes include MCM, MPPH, epidermal nevus syndrome, and congenital lipomatous asymmetric overgrowth of the trunk with vascular malformations, epidermal nevi, scoliosis/skeletal/spinal anomalies (CLOVES) syndrome. These conditions are frequently associated with body overgrowth and cutaneous hallmarks (Severino et al., 2020).

 

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Microcephaly Congenital or primary microcephaly is present at birth and is a common feature in several neurodevelopmental disorders. Microcephaly is defined as an occipitofrontal circumference (OFC) below 2 SD for sex, age, and ethnicity. Severe microcephaly is defined as an OFC below 3 SD. Comprehensive clinical evaluation should include serial head circumference measurements. Microcephaly implies reduced cerebral volume, and most children with severe microcephaly present with neurologic symptoms in infancy, including seizures and developmental delays. Primary microcephaly is considered syndromic when associated with extracranial malformations. Abnormal brain anatomy such as simplified cortical gyral pattern, lissencephaly, gray matter heterotopia, PMG, or abnormalities of deep grey matter or posterior fossa structures occur in more than three-quarter of cases (von der Hagen et al., 2014). The pathogenesis of primary microcephaly is heterogeneous, ranging from genetic disorders to adverse prenatal factors. Nongenetic causes include infections such cytomegalovirus or Zika virus, early intrauterine stroke, and exposure to alcohol, radiation, or certain drugs. Several hundred genetic syndromes have been associated with microcephaly. It is important to differentiate congenital microcephaly from acquired microcephaly due to postnatal injury to the developing brain from a variety of causes, including severe birth asphyxia or abusive head trauma. In a study of 680 patients with microcephaly, the etiology was ascertained in 59% of all patients, leaving 41% without a definite diagnosis. Genetic causes were identified in about half the patients with a known cause, perinatal brain damage accounted for 45%, and postnatal brain injury for 3% of cases (von der Hagen et al., 2014).  

 

Neural Tube Defects Abnormal closure of the neural tube can result in a range of disorders, including anencephaly, encephalocele, and spina bifida.

Anencephaly Anencephaly refers to absence of forebrain development because the anterior end of the neuropore fails to close. It is incompatible with life, and early prenatal detection invariably leads to termination of pregnancy.

Encephalocele Encephalocele is the presence of a midline cystic mass of meningeal tissue protruding through unfused skull bones. The cavity may also contain brain tissue. It can be anterior or posterior, and the former can be mistaken for a nasal polyp.

Spina Bifida and Myelomeningocele Please refer to Chapter 59 for detailed discussion.

VASCULAR DISEASE Perinatal/Neonatal Stroke Perinatal Arterial Ischemic Stroke Perinatal arterial ischemic stroke (PAIS) is defined as an embolic or thrombotic event that occurs between 20 weeks of

Fig. 29.18 Presumed perinatal arterial ischemic stroke, right MCA.  

gestation and 28 days of life. The incidence is 10.2 to 29 per 100,000 live births (Armstrong-Wells, Johnston, Wu, Sidney, & Fullerton, 2009; deVeber et al., 2017), and it accounts for approximately 80% of perinatal strokes. The most common presentation is focal seizures in the first week of life, but PAIS can also present with encephalopathy or focal neurologic deficits. A subset of children with presumed perinatal arterial ischemic infarct (PPAIS) are asymptomatic in the neonatal period but present with asymmetry of motor development at about 6 months of age. Diagnosis of PPAIS is confirmed with brain MRI demonstrating cystic encephalomalacia in an arterial distribution (Fig. 29.18). Porencephalic cyst, which is a cystic structure with abutting white matter, can be the result of PAIS or PPAIS in addition to other infectious, traumatic, or genetic etiologies. For both PAIS and PPAIS, the most common arterial distribution is the left middle cerebral artery. There are numerous risk factors for ischemic strokes in neonates. Maternal factors include infection or fever during pregnancy or the perinatal period, chronic medical conditions such as autoimmune disease or coagulation disorders, preeclampsia, and placental insufficiency or abruption. Fetal or neonatal factors include congenital heart disease, intracranial or systemic infection, coagulation disorder, or fetal intolerance of labor. Although fetal distress is a common risk factor, most of these neonates need only minimal if any resuscitation. Acute treatment is focused on treatment of provoking factors, neuroprotective measures, and control of seizures. Neonates rarely require antiplatelet or anticoagulation therapy.

Neonatal Hemorrhagic Stroke Neonatal hemorrhagic stroke (NHS) occurs in 6.2 to 15.9 per 100,000 live births (Armstrong-Wells et al., 2009; Cole et al., 2017). It is defined as a hemorrhage within the brain parenchyma (Fig. 29.19), although subarachnoid or intraventricular hemorrhage can be a complication of NHS. Seizures are common at presentation, and neonates are more likely to be encephalopathic with NHS than with PAIS. Risk factors for

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Childhood/Adolescence Stroke

Fig. 29.19 Neonatal hemorrhagic stroke, left.  

NHS include primiparity, young maternal age, postmaturity, and fetal distress during delivery. In a minority of patients, NHS is symptomatic of thrombocytopenia, coagulopathy, vitamin K deficiency, or vascular malformation, but the majority of cases are idiopathic. It is uncommon for neonates to need neurosurgical intervention in the acute period as the open fontanelle assists with regulation of intracranial pressure, but they are at risk for developing hydrocephalus in the long term.

Cerebral Sinovenous Thrombosis Cerebral sinovenous thrombosis (CSVT) is seen in 0.67 per 100,000 children, of which 43% are neonates (deVeber et al, 2001). Presenting symptoms are the same as for PAIS and NHS and are typically due to complications of CSVT, including ischemic or hemorrhagic stroke. Risk factors include systemic or intracranial infection, dehydration, hypercoagulability, congenital heart disease, and delivery complications. Consensus for the use of anticoagulation for neonatal CVST is lacking, so treatment is variable.

Childhood Arterial Ischemic Stroke Childhood arterial ischemic stroke (CAIS) is defined as an ischemic stroke, whether embolic, thrombotic, or due to watershed injury, that occurs in a child aged 28 days to 18 years (Fig. 29.20). The incidence of CAIS is 1.72 per 100,000 (deVeber et al., 2017). Risk factors include congenital heart disease, sickle cell anemia, intracranial or systemic infection, thrombophilia, and autoimmune disorders. Vasculopathies likely account for half of CAIS (deVeber et al., 2017; Wintermark et al., 2014). In contrast to neonates, children are more likely to present with focal neurologic deficits such as hemiparesis, hemisensory loss, aphasia, visual field cuts, cranial nerve dysfunction, or hemiataxia. Seizures are less common than in neonates but more common than in adults. Although the use of intravascular tissue-type plasminogen activator is controversial, endovascular thrombectomy is performed with increasing frequency (Ferriero et al., 2019). Focal cerebral arteriopathy. Focal cerebral arteriopathy (FCA) is defined as a focal narrowing or irregularity of the distal internal carotid or proximal middle cerebral artery (Fig. 29.21). FCA subtypes are traumatic or inflammatory, specifically following varicella or an upper respiratory infection. Children present with stuttering focal neurologic deficits. Treatment with steroids can be considered. Moyamoya disease. Moyamoya disease, which is Japanese for “puff of smoke,” is a progressive stenoocclusive arteriopathy that typically occurs in the distal internal carotid arteries and can include proximal anterior and middle cerebral arteries. It represents 8% of arterial ischemic strokes in children (Lee, Rivkin, Kirton, deVeber, & Elbers, 2017). Similar to FCA, presenting symptoms can also have a stuttering pattern. Injury can be transient ischemic attack, hemorrhagic stroke, or ischemic stroke. Risk factors include neurofibromatosis 1, Down syndrome, and sickle cell disease. Antiplatelet medication is the most common therapy in the acute period. Surgical revascularization is the treatment of choice to prevent recurrence.  

 

Periventricular Venous Infarct Periventricular venous infarct (PVI) is associated with germinal matrix hemorrhage, but there is a lack of data regarding epidemiology. The germinal matrix is a highly vascular structure adjacent to the lateral ventricles, and injury results in intraventricular hemorrhage leading to infarction of surrounding periventricular white matter. Risk factors include intrapartum complications such as maternal fever or infection, vaginal bleeding, or abdominal trauma. Comparable to PPAIS, delay in motor development is apparent by about 6 months of age. Diagnosis is confirmed with a brain MRI, which classically reveals periventricular white matter loss in an irregular or scalloped fashion.

Hypoxic Ischemic Encephalopathy Hypoxic ischemic encephalopathy is a common cause of acquired brain injury in the neonatal period. Additional details can be found in Chapter 32.

Fig. 29.20 Childhood arterial ischemic stroke, left MCA.  

 

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Fig. 29.22 Cerebral sinovenous thrombosis—filling defect in anterior/ posterior aspect of superior sagittal sinus.  

Fig. 29.21 Focal cerebral arteriopathy—inflammation/wall thickening of proximal right middle cerebral artery.  

Vasculitis. Vasculitis is inflammation in the arterial wall.  

Although CNS vasculitides are rare, secondary processes are more common than primary etiologies. CNS vasculitis typically presents with seizures and cognitive decline but can also present with focal neurologic deficits. Patients are at risk for either hemorrhagic or ischemic stroke. Treatment is aimed at the underlying process and commonly includes immunotherapy. Arterial dissection. Arterial dissection is a tear in the intimal wall of an artery. This leads to clot formation that can embolize. It is most common in an extracranial carotid or vertebral artery. It accounts for approximately 7% of childhood AIS (Rafay, Armstrong, deVeber, Domi, Chan, & MacGregor, 2006). Risk factors are head and/or neck trauma or connective tissue disorders. Treatment is typically with antiplatelet medications.  

Cerebral Sinovenous Thrombosis CSVT has an incidence of 0.67 per 100,000 children of which 57% are nonneonates (deVeber et al., 2001). The most common presenting symptom is headache with features of increased intracranial pressure, such as positional headache, early-morning emesis, or diplopia. It can also present with strokelike symptoms due to complications of CSVT, such as ischemic or hemorrhagic stroke (Fig. 29.22). Risk factors include dehydration, trauma, iron deficiency anemia, malignancy, thrombophilia, autoimmune conditions such as ulcerative colitis, nephrotic syndrome, estrogen-containing contraceptives, otitis, sinusitis, systemic infection, or intracranial infection. Anticoagulation is the mainstay of treatment (Ferriero et al., 2019).

Fig. 29.23 Arteriovenous malformation, left occipital.  

Vascular Malformations Arteriovenous malformation (AVM) and cerebral cavernous malformation (CCM) are the most common types of intracranial vascular malformations. An AVM is a collection of twisted blood vessels with direct arterial-to-venous connection and intervening brain parenchyma (Fig. 29.23). A CCM is a collection of dilated capillaries without intervening brain parenchyma (Fig. 29.24). Both entities can present with headache, focal seizure, or hemorrhagic stroke. A stroke as a complication of AVM tends to be catastrophic. The inheritance pattern for AVM is typically sporadic, whereas CCM is more likely to be familial.

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an incidence of 36% and is less common in PAIS and CAIS with an incidence of 15% and 7%, respectively (Billinghurst et al., 2017). Cortical injury implicates the highest risk for epilepsy while isolated subcortical injury, as in PVI, has a minimal increased risk. Although first-line treatment is antiseizure medications, children with medically refractory epilepsy should be considered for epilepsy surgery. Children with prior stroke are at risk for cognitive sequelae. Following perinatal or childhood stroke, most children will have a normal IQ. They are at increased risk for learning disabilities, attentional difficulties, and executive functioning impairment. Neuropsychological testing can identify these challenges and provide tools to the family and school to optimize the child’s success.

HEADACHE

Fig. 29.24 Cavernous malformation, left frontal.  

Prognosis Although the mortality associated with neonatal or childhood stroke is low, the morbidity is high. Children are at risk for sensorimotor deficits, epilepsy, and cognitive or behavioral problems. Children with minimal evidence of parenchymal injury may not have any deficits, whereas children with multifocal parenchymal injury are at highest risk for a severe neurodevelopmental outcome. The risk of motor impairment with stroke is dependent on location of injury. The risk increases with involvement of the corticospinal tracts, including motor cortex, posterior limb of the internal capsule, or pyramids. PAIS is the most common cause of hemiplegic cerebral palsy. Children with PAIS or CAIS typically have greater impairment in the upper limbs as opposed to venous infarcts with subcortical involvement that predominantly affects lower limbs. Epilepsy is another common morbidity for children with stroke. Acute symptomatic seizures are more common in neonatal injury than in older children, and the same is true for epilepsy. It is most common in children with PPAIS with

Headache is the most common neurological complaint evaluated by a pediatrician or child neurologist. It is important to distinguish between primary and secondary headache, and history is key. Headache characteristics are comprised of location, frequency, quality, severity, and duration of pain. Associated symptoms such as nausea, vomiting, photophobia, phonophobia, pericranial or muscle tenderness, rhinorrhea, and lacrimation are also valuable. Presence of red flags (Box 29.1) should prompt evaluation for secondary headache with neuroimaging. Transient visual obscurations are suggestive of brief periods of increased intracranial pressure. Diagnostic criteria for primary headache syndromes are detailed in the International Classification of Headache Disorders, Third Edition (Headache Classification Committee of the International Headache Society, 2013) (Table 29.3).

Migraine Migraine is seen in 20% of children (Oskoui et al., 2019) with a male predominance until 10 years of age when the prevalence shifts to a twofold increased female risk through adulthood (Victor, Hu, Campbell, Buse, & Lipton, 2010). A family history is present in almost all children. The most common type is migraine without aura, but as many as 20% of children will have migraine with aura. Visual auras may manifest as blind spots or zigzag lines that float across vision. The most common sensory aura is paresthesia of a limb, which will have a marching or spreading quality. It should be differentiated from stroke, which is marked by acute onset numbness in a full vascular territory. Less common presentations of

BOX 29.1 Headache Red Flags  

Age 5 or >20 attacks or constant

Duration

Last 4–72 hr

Last 30 min–7 days

2–180 min or continuous

Features

At least 2 of: Unilateral Pulsating Moderate to severe intensity Aggravation with activity At least 1 of: Nausea and/or vomiting Photophobia and phonophobia

At least 2 of: Bilateral Pressing or tightening Mild to moderate intensity Not aggravated by activity Both of: No nausea or vomiting No more than 1 of photophobia or phonophobia

Unilateral—tends to be orbital, supraorbital, or temporal Either or both of: At least 1 of: conjunctival injection, lacrimation, nasal congestion, rhinorrhea, eyelid edema, forehead or facial sweating, miosis, ptosis Restlessness or agitation

 

 

Including cluster, paroxysmal hemicrania, and hemicrania continua.

migraine include migraine with brainstem aura (previously known at basilar migraine), hemiplegic migraine, and retinal migraine. Other migraine phenotypes are benign paroxysmal torticollis, benign paroxysmal vertigo of childhood, and cyclic vomiting syndrome. Treatments for migraine are categorized as abortive or preventative. Nonsteroidal antiinflammatory drugs such as ibuprofen or naproxen are first-line treatments. Acetaminophen can also be considered. Zofran is a common outpatient treatment for nausea. Triptans are now FDAapproved in the pediatric population, beginning at 6 years of age. Triptans are contraindicated in patients with cardiac, cerebrovascular, or peripheral vascular disease; uncontrolled hypertension; hemiplegic migraine; or migraine with brainstem aura. If oral medications are not helpful, patients should present to the emergency department for a migraine cocktail, which is traditionally composed of intravenous fluids, ketorolac, diphenhydramine, and a dopamine receptor antagonist, of which prochlorperazine has the highest efficacy (Sheridan et al., 2018). Other considerations include valproic acid infusion, dihydroergotamine infusion, and occipital nerve block. Preventative treatment is important for any child with migraine. Headache hygiene is the first step. This focuses on adequate sleep, exercise, nutrition, and hydration; stress reduction; and limited electronic use. A daily medication is indicated for patients with more than one headache per week. For prepubertal children, the initial choice of medication is cyproheptadine. Common side effects are weight gain and sedation. For older children, first-line medications are topiramate or amitriptyline. Common side effects for topiramate are paresthesias, appetite suppression, and cognitive dulling. Common side effects for amitriptyline are sedation, constipation, and dry mouth. Other considerations for preventative therapy are propranolol, onabotulinum toxin A injections, or calcitonin generelated peptide inhibitors.

Tension-Type Headache Tension-type headache is the most common headache type seen in children and frequently co-occurs with anxiety and

depression. The exact frequency is likely underrepresented as children do not typically present for care. Posture while sittting, and sleeping should be examined to reduce undue stress on musculature of the neck and back. Treatments include relaxation, biofeedback, and physical therapy. Alternative treatments, such as heat therapy, massage, and acupuncture, can also be considered. Only a small proportion of children will require preventative pharmacotherapy.

Trigeminal Autonomic Cephalgias Trigeminal autonomic cephalgias (TACs) are exceedingly rare in the pediatric population. TACs include cluster headache, paroxysmal hemicrania, short-lasting unilateral neuralgiform headaches, and hemicrania continua. Diagnosis is crucial as there are treatment implications. Supplemental oxygen is used for cluster headache, and indomethacin is prescribed for paroxysmal hemicrania and hemicrania continua.

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sinovenous thrombosis in children. New England Journal of Medicine, 345(6), 417–423. https://doi.org/10.1056/ NEJM200108093450604 Di Donato, N., Chiari, S., Mirzaa, G. M., Aldinger, K., Parrini, E., Olds, C., … Dobyns, W. B. (2017). Lissencephaly: Expanded imaging and clinical classification. American Journal of Medical Genetics. Part A, 173(6), 1473–1488. https://doi.org/10.1002/ ajmg.a.38245 Dubourg, C., Kim, A., Watrin, E., Tayrac, M., de, Odent, S., David, V., & Dupé, V. (2018). Recent advances in understanding inheritance of holoprosencephaly. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 178(2), 258–269. https://doi.org/10.1002/ajmg.c.31619 Edwards, T. J., Sherr, E. H., Barkovich, A. J., & Richards, L. J. (2014). Clinical, genetic and imaging findings identify new causes for corpus callosum development syndromes. Brain, 137(6), 1579–1613. https://doi.org/10.1093/brain/awt358 Ferriero, D. M., Fullerton, H. J., Bernard, T. J., Billinghurst, L., Daniels, S. R., DeBaun, M. R., … on behalf of the American Heart Association Stroke Council and Council on Cardiovascular and Stroke Nursing, (2019). Management of stroke in neonates and children: A scientific statement from the American Heart Association/American Stroke Association. Stroke, 50(3). https://doi.org/10.1161/STR.0000000000000183 Ganau, M., Huet, S., Syrmos, N., Meloni, M., & Jayamohan, J. (2019). Neuro-ophthalmological manifestations of septo-optic dysplasia: Current perspectives. Eye and Brain, 11, 37–47. https://doi.org/10.2147/EB.S186307 Haddadi, K., Zare, A., & Asadian, L. (2018). Dandy-Walker syndrome: A review of new diagnosis and management in children. Journal of Pediatrics Review, 6(2), 47–52. http://jpr. mazums.ac.ir/article-1-193-en.html Headache Classification Committee of the International Headache Society (IHS). (2013). The International Classification of Headache Disorders, 3rd edition (beta version). Cephalalgia, 33(9), 629–808. https://doi.org/10.1177/0333102413485658 Kuppermann, N., Holmes, J. F., Dayan, P. S., Hoyle, J. D., Atabaki, S. M., Holubkov, R., … Wootton-Gorges, S. L. (2009). Identification of children at very low risk of clinically-important brain injuries after head trauma: A prospective cohort study. The Lancet, 374(9696), 1160–1170. https://doi.org/10.1016/S01406736(09)61558-0 Lee, S., Rivkin, M. J., Kirton, A., deVeber, G., & Elbers, J. (2017). Moyamoya disease in children: Results from the International Pediatric Stroke Study. Journal of Child Neurology, 32(11), 924–929. https://doi.org/10.1177/0883073817718730 McClugage, S. G., & Oakes, W. J. (2019). The Chiari I malformation. Journal of Neurosurgery. Pediatrics, 24(3), 217–226. https://doi.org/10.3171/2019.5.PEDS18382 Morris, J. K., Wellesley, D. G., Barisic, I., Addor, M. -C., Bergman, J. E. H., Braz, P., … Garne, E. (2019). Epidemiology of congenital cerebral anomalies in Europe: a multicentre, population-based EUROCAT study. Archives of Disease in Childhood, 104(12), 1181–1187. https://doi.org/10.1136/archdischild-2018-316733 Ntimbani, J., Kelly, A., & Lekgwara, P. (2020). Myelomeningocele—a literature review. Interdisciplinary Neurosurgery, 19, 100502. https://doi.org/10.1016/j. inat.2019.100502 Oskoui, M., Pringsheim, T., Billinghurst, L., Potrebic, S., Gersz, E. M., Gloss, D., … Hershey, A. D. (2019). Practice guideline update summary: Pharmacologic treatment for pediatric migraine prevention: Report of the Guideline Development,

Dissemination, and Implementation Subcommittee of the American Academy of Neurology and the American Headache Society. Neurology, 93(11), 500–509. https://doi.org/10.1212/ WNL.0000000000008105 Rafay, M. F., Armstrong, D., deVeber, G., Domi, T., Chan, A., & MacGregor, D. L. (2006). Craniocervical arterial dissection in children: Clinical and radiographic presentation and outcome. Journal of Child Neurology, 21(1), 8–16. https://doi.org/10.1177/ 08830738060210010101 Severino, M., Geraldo, A. F., Utz, N., Tortora, D., Pogledic, I., Klonowski, W., … on behalf of the European Network on Brain Malformations (Neuro-MIG), (2020). Definitions and classification of malformations of cortical development: Practical guidelines. Brain, 143(10), 2874–2894. https://doi. org/10.1093/brain/awaa174 Sheridan, D. C., Laurie, A., Pacheco, S., Fu, R., Hansen, M. L., Ma, O. J., & Meckler, G. D. (2018). Relative effectiveness of dopamine antagonists for pediatric migraine in the emergency department. Pediatric Emergency Care, 34(3), 165–168. https:// doi.org/10.1097/PEC.0000000000000718 Stutterd, C. A., Dobyns, W. B., Jansen, A., Mirzaa, G., & Leventer, R. J. (2018). Polymicrogyria Overview. In M. P. Adam, H. H. Ardinger, R. A. Pagon, S. E. Wallace, L. J. Bean, K. Stephens, & A. Amemiya (Eds.), GeneReviews. University of Washington– Seattle. http://www.ncbi.nlm.nih.gov/books/NBK1329/ Tekendo-Ngongang, C., Muenke, M., & Kruszka, P. (2020). Holoprosencephaly overview. In M. P. Adam, H. H. Ardinger, R. A. Pagon, S. E. Wallace, L. J. Bean, K. Stephens, & A. Amemiya (Eds.), GeneReviews. University of Washington–Seattle. http:// www.ncbi.nlm.nih.gov/books/NBK1530/ Tully, H. M., & Dobyns, W. B. (2014). Infantile hydrocephalus: A review of epidemiology, classification and causes. European Journal of Medical Genetics, 57(8), 359–368. https://doi. org/10.1016/j.ejmg.2014.06.002 van Dijk, T., Baas, F., Barth, P. G., & Poll-The, B. T. (2018). What’s new in pontocerebellar hypoplasia? An update on genes and subtypes. Orphanet Journal of Rare Diseases, 13(1), 92. https:// doi.org/10.1186/s13023-018-0826-2 VHP, L., Aragão, M., Pinho, R., Hazin, A., Paciorkowski, A., Penalva de Oliveira, A., & Masruha, M. R. (2020). Congenital Zika virus infection: A review with emphasis on the spectrum of brain abnormalities. Current Neurology and Neuroscience Reports, 20(11), 49. https://doi.org/10.1007/s11910-02001072-0 Victor, T., Hu, X., Campbell, J., Buse, D., & Lipton, R. (2010). Migraine prevalence by age and sex in the United States: A life-span study. Cephalalgia, 30(9), 1065–1072. https://doi. org/10.1177/0333102409355601 von der Hagen, M., Pivarcsi, M., Liebe, J., von Bernuth, H., Didonato, N., Hennermann, J. B., … Kaindl, A. M. (2014). Diagnostic approach to microcephaly in childhood: A twocenter study and review of the literature. Developmental Medicine and Child Neurology, 56(8), 732–741. https://doi. org/10.1111/dmcn.12425 Wintermark, M., Hills, N. K., deVeber, G. A., Barkovich, A. J., Elkind, M. S. V., Sear, K., … Forsyth, R. (2014). Arteriopathy diagnosis in childhood arterial ischemic stroke: Results of the vascular effects of infection in pediatric stroke study. Stroke, 45(12), 3597–3605. https://doi.org/10.1161/STROKEA HA.114.007404

30 Neuromuscular Disorders Michele Yang

For additional material related to the content of this chapter, please see Chapters 25, 36, 39, 40, and 59.

VIGNETTE A 3-year-old boy presents to you for evaluation of global developmental delay. His parents report that his gross motor milestones were delayed, with rolling at 8 months of age and walking at 24 months of age. They felt that from birth he was “floppy” and had poor latch and suck. He has limited language with 20 words. His examination is marked by a long facies, open mouth with a tented upper lip, and a dull appearance of his face. When he walks, he seems to drag his feet. He arises from supine with a Gower maneuver. His family history is notable for a mother with a history of learning delays. She appears to have limited facial expression with a long face. When you shake her hand she seems to have a hard time letting go of your hand.

OVERVIEW OF NEUROMUSCULAR DISORDERS What Are the Neuromuscular Disorders? This overview will discuss the group of genetically based neuromuscular disorders, the initial diagnostic workup, and management. This is a genotypically and phenotypically heterogeneous group of disorders of the peripheral nervous system involving the anterior horn cell, nerve, neuromuscular junction, and muscle. Infant and children present with hypotonia, gross and/or fine motor delays, and weakness. While classically the neuromuscular disorders are thought to involve only the peripheral nervous system, central nervous system involvement is increasingly being recognized. Cognitive delays, autism, behavioral problems, and seizures can be seen as the initial presentation. Therefore in any patient presenting with delays this group of disorders should be considered.

Diagnostic Workup of Neuromuscular Disorders The workup of any patient with developmental delay should begin with a history and an outline of the evolution of the delays, its character, and similar features in family members. It is helpful to establish the course as progressive, static, or saltatory. A progressive disorder may suggest a dystrophy, whereas myopathies are typically static. Saltatory disorders, characterized by exacerbation and partial recovery, can be seen with

disorders such as congenital myasthenic syndromes. The quality of fetal movements, breech presentation, and polyhydramnios may suggest in utero weakness. Early respiratory or bulbar weakness from birth may also suggest a neuromuscular disorder. A careful neurologic examination is required to verify the localization to the peripheral nervous system but may be daunting in a young infant or uncooperative child. As a rule, the direct approach of examination from head to toe is doomed to failure, particularly with an autistic or shy child. A more successful approach is observation, which often yields more information than attempting a strength examination. Invasive aspects of the examination, such as obtaining reflexes, should be performed last. It is, however, important to establish the pattern of weakness and to check reflexes when considering a neuromuscular disorder (Table 30.1). Therefore the examiner should observe the child throwing a ball, arising from supine (Gower maneuver), climbing stairs, walking/ running, jumping, picking up snacks with fingers, and kicking a ball. An infant’s spontaneous movements should be observed on the examination table (e.g., presence of a froglegged position), spontaneous movements against gravity, and grip strength. Formal muscle strength testing of the older child can be graded on the Medical Research Council (MRC) scale of 0 to 5, with a grade of 0 indicating no movement and a grade of 5 indicating full power. A distinction between hypotonia and weakness needs to be made here, a distinction that can be difficult to make but crucial to the workup. While weak patients are always hypotonic, hypotonic patients may not always be weak. For instance, patients with Down syndrome have hypotonia but do not have muscle involvement or weakness. However, infants with spinal muscular atrophy (SMA) will have both weakness and hypotonia. This distinction is critical when determining the next steps in the workup. Next, the pattern of weakness should be established. Distal weakness, suggested by foot drop or difficulty manipulating objects with the fingers, can suggest a neuropathy. Proximal weakness, with difficulty arising from the floor or climbing stairs, pelvic instability with walking/running, or neck flexion weakness can suggest a myopathy. Other localizing signs include the presence of tremor, which can suggest a neuropathy, and the presence of fasciculations, which can suggest a motor neuron disorder. Pattern recognition of these constellations of signs therefore is the first critical step in the diagnostic workup (Barohn et al., 2014). 297

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TABLE 30.1 Summary of Examination Findings by Localization  

Examination Findings

Central

Anterior Horn Cell

Peripheral Nerve

Neuromuscular Junction

Muscle

Strength

Normal or slightly decreased

Decreased

Decreased, distal > proximal

Variable, typically most prominently of face, eye movements, bulbar

Decreased, proximal > distal

Muscle mass

Normal or disuse atrophy

Decreased

Decreased, distal > proximal

Normal or decreased

Can be decreased Can be pseudohypertrophy in dystrophies

Tone

Decreased to evolving increased tone

Decreased

Decreased

Decreased

Decreased

Deep tendon reflexes

Normal to increased

Decreased

Decreased, in distal to proximal fashion, typically out of proportion to weakness

Decreased

Decreased, though preserved until significant weakness

Fasciculations

None

Present

None

None

None

Sensation

Normal

Normal

Decreased, in distal to proximal fashion

Normal

Normal

For any patient with delays, and particularly if one suspects a primary neuromuscular disorder, a serum creatine kinase (CK) should be the first test performed. This is a simple, inexpensive laboratory study that can quickly screen for a primary neuromuscular disorder and shorten the diagnostic odyssey. If the CK is elevated, then an algorithm may be a useful framework in which to start the workup and make appropriate referrals (Fig. 30.1). It is not a comprehensive algorithm but meant as a guide through the initial workup. If the CK is elevated, muscle dystrophies, congenital muscular dystrophies, and limb girdle muscular dystrophies should be considered. However, it should be noted that CKs can be mildly elevated in neuropathies, motor neuron disorders, and myopathies, and the normal range may be related to gender and race (Barohn et al., 2014). The CKs will typically be in the range of the 1000 s for limb girdle muscular dystrophies and as high as 10 times normal in patients with dystrophinopathies. If intellectual disability or autistic-like features are present, then a magnetic resonance image (MRI) of the brain should be performed. An abnormal MRI of the brain may suggest a congenital muscular dystrophy such as due to LAMA2 or FKRP mutations, as these genes are expressed in the central nervous system. If the CK is normal, then other neuromuscular disorders are a possibility if weakness is present. These can include neuropathies, motor neuron disorders, and congenital myopathies and myasthenic syndromes. Of note, the levels of alanine aminotransferase (ALT) and aspartate aminotransferase (AST), traditionally thought of as liver function tests, may also be elevated as these enzymes are also found within myofibers. Therefore in any patient with elevated AST and ALT levels without gastrointestinal signs or symptoms a serum CK should be obtained. Further workup to distinguish between these possibilities can include the following studies:  

1. Electrodiagnostic (EDX) testing: Nerve conduction studies (NCSs) and electromyography (EMG) are electrophysiologic tests that assess the function of the the nerve and muscle, respectively. With NCSs, the patient has electrodes placed over the limbs, and a small electrical current is passed transcutaneously to the nerve. The nerve conducts this signal to the recording electrodes, and the response latency, response amplitude, and conduction velocity are calculated. The response amplitude reflects the number of underlying axons, and the latency and conduction velocity reflect the myelination of the nerve. The EMG can determine the chronicity and severity of a neuropathy, the presence of denervating features, and the presence of a myopathy. These are minimally invasive tests, but they can be frightening to a child initially. However, in the hands of an experienced electromyographer, this can be a helpful diagnostic test. The major aim of the EDX examination is localization, and therefore it is important to remember that the EDX examination is an extension of the clinical examination. While nearly every muscle in the body can be studied by needle examination, this is neither desirable nor feasible in the pediatric patient. Therefore approaching the EDX study with a specific question about localization and diagnosis can help both the electromyographer and the patient. The exact etiology cannot be made with EDX studies alone, but localization and the presence of specific findings, such as electrical myotonia, can help guide the diagnostic workup. 2. Muscle biopsy: Traditionally, in the diagnosis of a primary neuromuscular disorder a muscle and/or nerve biopsy had been performed. Analysis of histology, histochemistry, immunohistochemistry, and ultrastructure by light and electron microscopy had been the mainstay of diagnosis







 

CHAPTER 30 Neuromuscular Disorders

299

Severe respiratory involvement Serum CK

Normal

Elevated

Weakness present

Consider: Congenital muscular dystrophies Muscular dystrophies Limb girdle muscular dystrophy

Distal

Consider: Neuropathies SMA

Cognive delay

Abnormal MRI brain Consider: LAMA2associated disorders FKRPassociated disorders

Consider: Centronuclear myopathies Nemaline rod myopathy Congenital myasthenic syndrome Myotonic dystrophy SMA SMARD

Proximal

Consider: Congenital myopathies Congenital muscular dystrophies SMA

Normal MRI Consider: Myotonic dystrophy

Facial weakness

Ophthalmoparesis

Consider: Congenital myopathies (centronuclear myopathies) Congenital myasthenic syndromes

Consider: Centronuclear myopathies Congenital myasthenic syndromes

Fig. 30.1 Algorithm for diagnosis of neuromuscular disorders. CK, Creatine kinase; MRI, magnetic resonance imaging; SMA, spinal muscular atrophy; SMARD, spinal muscular atrophy with respiratory distress.  

particularly for the congenital myopathies and muscular dystrophies. The presence of dystrophic changes, with necrotic muscle fibers, regenerating fibers, and fibrosis, may suggest a muscular dystrophy. Intact muscle fibers with centralized nuclei may suggest a congenital myopathy. Fiber type grouping, with atrophic fibers of the same fiber type, may suggest a neuropathy. Specific antibody stains against specific proteins of the sacrolemmal membrane can identify deficiencies of specific proteins. However, in this era of technological advances in genetic testing, genetic testing is often performed prior to obtaining a biopsy, as genetic testing is often less invasive than a biopsy. In many cases because a specific diagnosis cannot be made by muscle biopsy alone and requires follow-up genetic testing, genetic testing has been performed as a first step to expedite a diagnosis. 3. Imaging: Similarly, muscle imaging with MRI or ultrasound is often performed in favor of a muscle biopsy. The differential involvement of specific muscles by imaging and the appearance of the muscle can be helpful to diagnose specific neuromuscular disorders and suggest a specific gene. 4. Genetic testing: Genetic testing is often performed as the first diagnostic test, after a serum CK, if neuromuscular



disorders are suspected. Next-generation sequencing panels, comprised of genes common in the neuromuscular disorders, are commercially available and of relatively low cost compared with single-gene sequencing (Winder et al., 2020). Therefore next-generation sequencing panels are often performed preferentially to single-gene sequencing. 5. Newborn screening: Newborn screening is available for some of the neuromuscular disorders, depending on the state. For instance, SMA testing is available in most states and allows for earlier detection and therefore treatment of a disorder in which, in the past, 90% of infants died in the first 2 years of life (CureSMA, n.d.; Mercuri et al., 2018).



SPECIFIC NEUROMUSCULAR DISORDERS





Neuromuscular disorders can be overwhelming to consider as a group, given the wide range of presentations and increasing number of genes associated with them. For the purposes of this review, we will simplify neuromuscular disorders into a few categories based on localization in the nervous system. We will also discuss the more common specific disorders within each group.

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Motor Neuron Disorders In this group of disorders there is progressive degeneration of the anterior horn cells in the spinal cord, resulting in weakness. The classic disorder is SMA due to biallelic mutations in the SMN1 gene, resulting in deficiency of the SMN protein. SMA has been traditionally subcategorized further into types based on the highest motor milestone achieved (Montes et al., 2018). Type 1 is the most common type, accounting for 60% of all cases (Mercuri et al., 2018). Without treatment, patients typically develop symptoms before 6 months of age and never develop the ability to sit independently; survival is limited, and most infants die within the first 2 years of life (Finkel et al., 2018). They experience progressive weakness in bulbar, respiratory, and limb muscles. Patients with SMA type 2 typically achieve the ability to sit independently, but they never achieve the ability to stand or walk on their own. Symptoms present between 6 and 18 months of age (Mercuri et al., 2016). Patients with SMA type 3 achieve the ability to walk independently, though they may lose this ability. Symptoms present after 12 months of age, and they live to adulthood. SMA type 4 patients usually present in adulthood and have a normal lifespan. The classifications have shifted, however, in the last decade with improvements in and standardization in the care of patients with SMA (Mercuri et al., 2020; Tizzano & Finkel, 2017). Additionally, earlier recognition of these diagnoses has allowed early intervention with improved care. Advancements in therapies have been particularly exciting for this group of patients. Therapies aimed at increasing the function of the SMN2 backup gene have included altering SMN2 mRNA splicing to produce more full-length SMN protein. Antisense oligonucleotides are now commercially available to administer intrathecally, and oral small molecules are in clinical trials. Current intrathecal treatments for viral vector-mediated replacement of SMN1 genes are also available. Treatments may not address all symptoms but have increased motor function and improved mortality. Nusinersen, a US Food and Drug Administration (FDA)–approved intrathecal treatment, is given in four loading doses over 2 months and then every 4 months for life. Onasemnogene abeparvovce-xioi is approved for patients up to 2 years of age as a gene replacement therapy in a one-time intravenous infusion (Waldrop & Kolb, 2019). Those patients treated earlier appear to have improvement over those treated at later ages (Lowes et al., 2019). The inclusion of SMA on the newborn screen has helped with the early detection of this diagnosis. However, 5% of infants with SMA will not be identified by newborn screening due to an SMN1 gene point mutation on one allele and a deletion of exon 7 on the other (Mercuri et al., 2018). Therefore a high index of suspicion is required even if the newborn screening does not detect an SMN1 deletion, so that appropriate follow-up genetic testing may be pursued and that this treatable diagnosis is not overlooked.

Nerve Inherited neuropathies are one of the most common neuromuscular disorders, occurring with a prevalence of 1 in 2500. This is a genotypically and phenotypically heterogeneous

group of disorders, which includes pure motor, pure sensory, sensory-autonomic, and sensorimotor neuropathies. The typical presentation of the inherited sensorimotor neuropathies (also known as Charcot-Marie-Tooth disease [CMT]) is with slowly progressive sensory and motor impairments. Toe walking may be the first presentation, with progression to a high steppage gait. Foot deformities such as pes cavus and hammertoe deformities are common. Muscular atrophy and weakness progress in a distal-to-proximal fashion. Patients report sensory changes, including difficulty with balance, with particular difficulty on uneven surfaces, and with walking in the dark. The subtypes have been classically subdivided into three forms as defined by electrophysiologic findings: demyelinating, axonal, and intermediate types; and by inheritance pattern. EDX studies have an important role in identifying the subtypes. In demyelinating forms the motor NCSs in the upper limbs are below 38 m/sec, and usually 60% a. Structural abnormality on imaging b. EEG abnormality, including focal epileptiform discharges or focal slowing c. Remote symptomatic etiology 3. Diagnosis of an epilepsy syndrome (see Table 31.1)

ILAE 2017 Classificaon of Seizure Types Expanded Version 1

Aware









EEG, Electroencephalogram; ILAE, International League Against Epilepsy. Adapted from Fisher, R. S., Acevedo, C., Arzimanoglou, A., Bogacz, A., Cross, J. H., Elger, C. E., Engel, J., Forsgren, L., French, J. A., Glynn, M., Hesdorffer, D. C., Lee, B. I., Mathern, G. W., Moshé, S. L., Perucca, E., Scheffer, I. E., Tomson, T., Watanabe, M., & Wiebe, S. (2014). ILAE official report: A practical clinical definition of epilepsy. Epilepsia, 55(4), 475–482. https://doi.org/10.1111/epi.12550

as a febrile seizure or acute symptomatic seizures), does not contribute to a diagnosis of epilepsy.

Types of Seizures Classification of seizure and epilepsy types has changed throughout the years with the most recent definitions published by ILAE in 2017 (Figs. 31.1 and 31.2). Classification of seizure types starts with type of seizure onset: focal, with origin limited to a network within one hemisphere; generalized, originating in bilaterally or widespread distributed networks; or unknown. Focal onset seizures are classified as aware or with impaired awareness. The next differentiation refers to the first prominent symptom at seizure onset, classified as either motor or nonmotor, followed by further descriptions of these motor and nonmotor symptoms. Focal to bilateral tonic-clonic refers to a seizure spreading to involve both hemispheres, formerly referred to as secondary generalization. Generalized onset seizures, in addition to those of unknown onset, are classified according to their first prominent symptom, motor versus nonmotor. Unclassified seizures are reserved only for when the clinician is confident that the event is a seizure but cannot further classify (Fisher et al., 2017a, 2017b).

Types of Epilepsy In addition to application of the standardized classification of seizure types, it is possible to identify the epilepsy type (focal, generalized, combination, or unknown) (see Fig. 31.2) (Scheffer et al., 2017).

Epilepsy Syndromes Classification into specific epilepsy syndromes provides prognostic information, including the risk of additional seizure types, potential seizure triggers, likelihood of seizure freedom and epilepsy resolution, and the risks of comorbidities (Scheffer et al., 2017). Identification of the specific epilepsy syndrome can also guide antiseizure medication selection

Impaired Awareness

Motor Onset

automasms atonic2 clonic epilepc spasms 2 hyorkinoc myoclonic tonic

Unknown Onset Motor

Motor

tonic-clonic clonic tonic myoclonic myoclonic-tonic-clonic myoclonic-atonic atonic epilepc spasms

tonic-clonic epilepc spasms

Nonmotor

behavior arrest

Unclassified 3

Nonmotor (absence)

Nonmotor Onset autonomic behavior arrest cognive emoonal sensory

typical atypical myoclonic eyelid myoclonic

focal to bilateral-tonic-clonic

Fig. 31.1 International League Against Epilepsy (ILAE) 2017 classification of seizure types. 1, Definitions, other seizure types, and descriptors are listed in the accompanying paper and glossary of terms. 2, Degree of awareness usually is not specified. 3, Due to inadequate information or inability to place in other categories. (From Fisher, R. S., Cross, J. H., French, J. A., Higurashi, N., Hirsch, E., Jansen, F. E., Lagae, L., Moshé, S. L., Peltola, J., Roulet Perez, E., Scheffer, I. E., & Zuberi, S. M. (2017). Operational classification of seizure types by the International League Against Epilepsy: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 522–530. https://doi.org/10.1111/epi.13670)  

Seizure types∗ Focal

Co-morbidies



Generalized Onset

Focal Onset

 

Generalized

Unknown

Eology Structural Genec

Epilepsy types Focal

Generalized

Combined Generalized & Focal

Infecous Unknown

Metabolic Immune

Epilepsy Syndromes

Unknown

Fig. 31.2 International League Against Epilepsy 2017 classification of epilepsies. *, Onset of seizure. (From Scheffer, I. E., Berkovic, S., Capovilla, G., Connolly, M. B., French, J., Guilhoto, L., Hirsch, E., Jain, S., Mathern, G. W., Moshé, S. L., Nordli, D. R., Perucca, E., Tomson, T., Wiebe, S., Zhang, Y. H., & Zuberi, S. M. (2017). ILAE classification of the epilepsies: Position paper of the ILAE Commission for Classification and Terminology. Epilepsia, 58(4), 512–521. https://doi. org/10.1111/epi.13709)  

and subsequent evaluation for the epilepsy etiology (i.e., genetic testing). Epilepsy syndromes encompass several combined features and include age of onset, seizure types, seizure triggers, and electrographic and imaging findings (Scheffer et al., 2017). Three main categories of epilepsy syndromes are idiopathic generalized epilepsies (also referred to as genetic generalized epilepsies due to a presumed genetic risk), selflimited focal epilepsies, and epileptic encephalopathies. The term developmental and epileptic encephalopathy is used when both the underlying disorder and the epileptic activity additively contribute to neurocognitive and neurobehavioral impairments (Scheffer et al, 2017). Table 31.1 reviews features of some of the more common epilepsy syndromes.

 

CHAPTER 31 Seizures and Epilepsy

307

TABLE 31.1 Common Epilepsy Syndromes  

Syndrome Name

Age of Onset

Idiopathic Generalized Epilepsies Childhood 2–12 yo (peak 5–7 yo) absence (EpilepsyDiagnosis. epilepsy (CAE) org, 2020; Wirrell, 2016)

Seizure Types

Medications and Treatments

Other

Absence seizures • Frequent (multiple per day) • Brief (~10 sec) • Provoked by hyperventilation Can have generalized tonic-clonic seizures, typically in adolescence (EpilepsyDiagnosis.org, 2020; Matricardi et al., 2014; Wirrell, 2016)

Ethosuximide Valproic acid Lamotrigine (Glauser et al., 2010)

Associated with neurocognitive deficits, including ADHD. Seizures are typically self-limited but may evolve to JAE (EpilepsyDiagnosis.org, 2020; Wirrell, 2016). With onset of absence seizures 4-year age difference) or abilities are also cause for concern, as are those that involve threat, force, or aggression. Behaviors that interfere with social development are considered problematic as well. For example, a child dismissed from a team sport due to inappropriate touching of other players may be displaying a problematic sexual behavior. Problematic sexual behavior among individuals with IDD is common, with an incidence ranging from 15% to 33%. The behaviors are like those in the general population, except that those with IDD tend to be more socially inappropriate than assaultive (Thom, Grudzinskas, & Saleh, 2017). Problematic sexual behavior can range from a child with developmental disability disrobing in public to a youth with ASD asking sexual questions to strangers or sexting (Box 74.3). It can include startling behavior such as frottage and using female family members’ undergarments for masturbation and behavior that is illegal (e.g., touching a younger child’s genitals or stalking) (Blasingame, 2018). Problematic sexual behavior in this population, and in those with acquired brain injuries and ASD, may be related to poor boundaries/social skills, lack of impulse control, tendency toward repetitive/perseverative behavior, or difficulty understanding abstract concepts such as private versus public or what is hurtful or uncomfortable to others (Blasingame, 2018; Kellogg, 2009) as a result of dysfunction in areas of the brain (including the frontal cortex, amygdala, or temporal lobes) or as a result of their primary condition. In individuals with IDD chronologic age discordant to developmental ability may turn what is normative sexual behavior (for developmental level) into problematic sexual behavior (due to chronologic age). Problematic sexual behavior in individuals with IDD may also stem from a lack of opportunity for social relationships to explore sexuality safely or to learn and practice sociosexual behaviors (Thom et al., 2017). A biopsychosocial model can guide assessment and treatment of problematic sexual behaviors (Griffiths & Fedoroff, 2014; Miodrag, Richards, Fedoroff, & Watson, 2020). From

BOX 74.3  Problem Sexual Behavior Supports and Resources Excessive or Public Masturbation 1. Suggested conversation: “Today, we discussed that masturbation is a normal behavior. Excessive and/or inappropriate masturbation is often difficult to control, as it can be a self-reinforcing behavior. We discussed that although inappropriate masturbation, such as public masturbation, may not completely go away, your child can learn to be redirected to perform the behavior in private. The key to approaching this is to ensure that your child both has a personal space and understands the appropriate place for private behaviors. Recommend utilizing a schedule or timer to set boundaries for these behaviors.” 2. Specific protocols for minimizing excessive public masturbation include interrupting the behavior, reminding the person of appropriate time and place, redirection, and allowing masturbation in private. Often, working with a behavior therapist who can offer applied behavior analysis is recommended. 3. Resources: Kate, E. Reynolds books: Things Tom likes: A book about sexuality and masturbation for boys and young men with autism and related conditions (2015) and Things Ellie likes: A book about sexuality and masturbation for girls and young women with autism and related conditions (2015). 4. Inappropriate interactions (stalking), touching, or romantic gestures a. Through the Individualized Education Program, request a functional behavior assessment and a behavior intervention plan for positive supports such as social skills group, scripting, video modeling and feedback, self-management, and rule-governed behaviors. b. Resource: Teaching moment: Teaching your kids appropriate and inappropriate touching: https://www.northshore.org/healthyyou/teaching-your-kids-appropriate-touching/ Adapted from Houtrow, A., Elias, E., Davis, B. E., & Council on Children With Disabilities. (2021). Promoting healthy sexuality in children and youth with disabilities. Pediatrics, 148(1), e2021052043. doi: 10.1542/peds.2021-052043. Epub 2021 Jun 28. PMID: 34183359.

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a biomedical perspective, knowledge of a syndrome can help explain the nature of a problematic sexual behavior. For instance, individuals with Smith-Magenis syndrome engage in polyembolokoilamania, and skin picking (including rectal picking and digging) is common in Prader-Willi syndrome. Individuals with Williams syndrome are more prone to urinary tract infections, which may present as self-touch as opposed to masturbation, as they may be unable to communicate their symptoms. A person with Tourette syndrome may have a complex tic of a seemingly sexual nature (Griffiths & Fedoroff, 2014). Individuals with ASD have difficulty detecting social cues and may not recognize personal boundaries or that another person does not want to engage in a relationship. Medication side effects should be considered as possible cause of problematic sexual behavior (Griffiths & Fedoroff, 2014; Miodrag et al., 2020). Psychological assessment should include not only assessment of cognitive ability and adaptive functioning but also behavioral assessment, trauma assessment, and assessment of sexual knowledge. All behavior serves a function, and defining the antecedent, the behavior, and the consequences can help identify the function of a specific problem sexual behavior. For instance, a behavioral assessment could help identify whether a child was engaging in a problematic sexual behavior to escape a consequence or to gain attention (Griffiths & Fedoroff, 2014). Individuals with IDD are more vulnerable to abuse, yet trauma history in this population is rarely addressed (Miodrag et al., 2020). Children with sexual abuse histories have higher rates of problem sexual behavior than children without such a history (Mesman et al., 2019). Assessment of sexual knowledge is important, as a younger developmental versus chronologic age does not mean lack of experience or lack of physical development (Griffiths & Fedoroff, 2014). Behavior may be related to lack of understanding to a certain degree rather than total lack of awareness (Lindsay & Michie, 2013). Finally, social conditions such as living in an environment where sexuality is more open or allows access to sexual material may result in modeling of such behavior (Kellogg, 2009; Mesman et al., 2019). Other socioenvironmental factors that may contribute to problem sexual behaviors are family dysfunction and stress, including poverty, single parenting, domestic violence, parent incarceration, and chronic illness in child or parent (Kellogg, 2009; Lindsay & Michie, 2013; Mesman et al., 2019) as these may inhibit parental guidance and appropriate supervision.

Individuals With Disabilities Are at Risk for Sexual Abuse and Victimization Individuals with disabilities are almost three times more likely to be sexually abused than peers without disabilities, and risks are even higher for those with IDD and for females. Although studied 30 years ago, it is likely that perpetrators of sexual violence against individuals with disabilities are known to the victim with the majority being in their social network or caregiver role (Crawford-Jakubiak, Alderman, Leventhal, Committee on Child Abuse and Neglect, & Committee on Adolscence, 2017). Individuals with IDD and parents report risk factors that include inadequate awareness of vulnerable

social settings, misunderstanding of appropriate relationships and physical contact, desire to conform, and poor knowledge and communication skills to discuss sexual maltreatment (Walters & Gray, 2018).

THE ROLE OF THE DEVELOPMENTAL BEHAVIORAL CLINICIAN As youth with disabilities, especially IDD, gain increasing agency and control and transition to adulthood, it is critical to better understand the context and outcomes of demands for choice and agency over sexuality and relationships. Often, it is the developmental-behavioral pediatrician (DBP) who is asked by a family about medical prognosis for autonomy and lifetime health-related quality of life. Though no one has a crystal ball, the DBP can share an awareness of the wide intersectional scope of the lives of individuals with disabilities and support their self-awareness and desires around sexuality. Through a longitudinal relationship, the DBP can help reframe sexuality in disability away from the negative for individuals and their families, while addressing safety through education and appropriate supervision. Finally, the DBP can provide a safe space, perhaps not dissimilar to Winnicott’s “holding place,” (Winnicott, 1971) for youth with disabilities and their families to express their dreams, sexual desires, beliefs, and attitudes as society’s understanding moves from sexual marginalization to intersectionality. Often during a big transition, such as puberty and adolescence, parents “seek permission” to be seen with their youth more often than once a year. Setting up office visits for individuals with disabilities every 6 months as puberty begins (especially for girls) and to establish school and community supports for transition and education is often preferred. There are transition checklists and strategies for individuals with a wide array of disabilities (see Gottransition.gov). As in the vignette, this is a great time to discuss with parents how to build a broader circle of support for their child and encourage them to share their future goals, but also to explore what a happy and meaningful life means through their child’s eyes.

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Mona, L. R., Cameron, R. P., & Clemency Cordes, C. (2017). Disability culturally competent sexual healthcare. American Psychology, 72(9), 1000–1010. https://doi.org/10.1037/amp0000283 Pownall, J. D., Jahoda, A., & Hastings, R. P. (2012). Sexuality and sex education of adolescents with intellectual disability: Mothers’ attitudes, experiences, and support needs. Intellectual and developmental disabilities, 50(2), 140–154. https://doi. org/10.1352/1934-9556-50.2.140 Roden, R. C., Schmidt, E. K., & Holland-Hall, C. (2020). Sexual health education for adolescents and young adults with intellectual and developmental disabilities: Recommendations for accessible sexual and reproductive health information. Lancet Child and Adolescent Health, 4(9), 699–708. https://doi. org/10.1016/S2352-4642(20)30098-5 Rosenbaum, P., & Gorter, J. W. (2012). The “F-words” in childhood disability: I swear this is how we should think! Child: Care, Health and Development, 38(4), 457–463. https://doi. org/10.1111/j.1365-2214.2011.01338.x Rowen, T. S., Stein, S., & Tepper, M. (2015). Sexual health care for people with physical disabilities. Journal of Sexual Medicine, 12(3), 584–589. https://doi.org/10.1111/jsm.12810 Seburg, E. M., McMorris, B. J., Garwick, A. W., & Scal, P. B. (2015). Disability and discussions of health-related behaviors between youth and health care providers. Journal of Adolescent Health, 57(1), 81–86. https://doi.org/10.1016/j.jadohealth.2015.03.004 Sommarö, S., Andersson, A., & Skagerström, J. (2020). A deviation too many? Healthcare professionals’ knowledge and attitudes concerning patients with intellectual disability disrupting norms regarding sexual orientation and/or gender identity. Journal of Applied Research in Intellectual Disabilities, 33(6), 1199–1209. https://doi.org/10.1111/jar.12739

Thom, R. P., Grudzinskas, A. J., & Saleh, F. M. (2017). Sexual behavior among persons with cognitive impairments. Current Psychiatry Reports, 19(5), 25. Turner, D., Briken, P., & Schottle, D. (2017). Autism-spectrum disorders in adolescence and adulthood: Focus on sexuality. Current Opinion in Psychiatry, 30(6), 409–416. van Asselt-Goverts, A. E., Embregts, P. J., Hendriks, A. H., Wegman, K. M., & Teunisse, J. P. (2015). Do social networks differ? Comparison of the social networks of people with intellectual disabilities, people with autism spectrum disorders and other people living in the community. Journal of Autism and Developmental Disorders, 45(5), 1191–1203. https://doi. org/10.1007/s10803-014-2279-3 Walters, F. P., & Gray, S. H. (2018). Addressing sexual and reproductive health in adolescents and young adults with intellectual and developmental disabilities. Current Opinion in Pediatrics, 30(4), 451–458. https://doi.org/10.1097/ MOP.0000000000000635 Welage, N., & Liu, K. P. (2011). Wheelchair accessibility of public buildings: A review of the literature. Disability and Rehabilitation: Assistive Technologies, 6(1), 1–9. https://doi.org/ 10.3109/17483107.2010.522680 Winnicott, D. W. (1971). Playing and reality. Tavistock Publications. World Health Organization. (2001). International classification of functioning, disability and health. Author. Zablotsky, B., Black, L. I., Maenner, M. J., Schieve, L. A., Danielson, M. L., Bitsko, R. H., & Boyle, C. A. (2019). Prevalence and trends of developmental disabilities among children in the United States: 2009–2017. Pediatrics, 144(4), e20190811. https:// doi.org/10.1542/peds.2019-0811

75 Gender and Its Variation in Youth Claire A. Coyne, Afiya Sajwani, and Diane Chen

For additional material related to the content of this chapter, please see Chapters 9 and 74.

VIGNETTES 1. Zain is a 6-year-old child designated male at birth. Two years ago, he asked his parents to buy him a skirt following a playdate during which he borrowed his friend’s skirt to dress up as Moana, his favorite char­ acter. His parents initially discouraged him from wearing skirts in public due to concerns about bullying but noticed increased withdrawal and distress when he was told to change before leaving the house. Now he regularly wears skirts around the house, at school, and in familiar public spaces with his parents. Zain enjoys drawing and painting, playing with Legos, and making jewelry to match his outfits. Zain is often asked if he is a boy or a girl. Sometimes he responds, “I’m a he”; other times, “I’m a girl-boy.” 2. Josephine or “Joey” is a 10-year-old child designated female at birth. Joey is a “tomboy,” gravitating toward playing sports and with trucks and action figures since toddlerhood. In imaginary play, Joey takes on the role of the “father” or “brother,” and at school Joey’s friends are primarily boys. Parents allow Joey to choose clothing and hairstyles—Joey has not chosen to wear dresses in years and has worn short hair for the last 3 years. Joey is sometimes mistaken for a boy by strangers, which Joey enjoys. Joey has been more withdrawn and tearful over the last 6 months, refusing to go swimming despite this being a favorite summer activity, and choosing to wear baggy sweatshirts despite it being summer. When parents talked to Joey about their concerns, Joey expressed worry and distress about puberty, tearfully telling parents, “I really don’t want my chest to get bigger or to get a period because I’m not a girl.” 3. Xander is a 15-year-old adolescent designated female at birth. Xander recently told parents, “I am not a boy but don’t like being a girl” and describes a gender identity of nonbinary. Xander requested parents use they/them/ their pronouns and to go by the name Xander rather than the birth name. Xander enjoys marching band, cos-play, and online role-playing games, where they have met transgender and nonbinary peers. Xander identi­ f­ ies as pansexual and has joined the LGBTQ+ group at school. Xander is very distressed by having a monthly menstrual cycle. Xander recently donned a short haircut

and asked parents to buy a chest binder. Parents reported that Xander never really cared about clothing in childhood except as related to sensory sensitivities. In middle school, Xander was diagnosed with attention-deficit/hyperactivity disorder and autism spectrum disorder with no intellectual impairment and requires mild supports to manage academic organization. Xander does not feel close to peers at school despite having known them since elementary school. Parents expressed concern that Xander’s nonbinary identity may be due to the influence of peers in an online gaming community..

Gender-diverse identities exist as part of healthy human diversity. Historical research indicates presence of gender diversity in several cultures, including non-Western and precolonial cultures (Hinchy, 2017; M’Baye, 2013). There has been increased visibility of transgender and gender-diverse (TGD) people in popular culture, legal spheres, and research in the last decade, and more people, particularly younger people, are identifying with a gender identity different from their designated sex at birth. Recent studies suggest between 0.004% and 0.6% (Herman, Flores, Brown, Wilson, & Conron, 2017; Meerwijk & Sevelius, 2017) of adults and between 0.7% (Herman et al., 2017) and 2.7% (Rider, McMorris, Gower, Coleman, & Eisenberg, 2018) of high school–age students identify as TGD in the United States. Health professionals are likely to encounter TGD youth in their clinical practices. Thus it is imperative to have a basic understanding of gender development, the unique barriers TGD youth encounter, and knowledge of available genderaffirming treatment options. This is especially important given the significant physical and mental health disparities (e.g., Day, Fish, Perez-Brumer, Hatzenbuehler, & Russell, 2017) and low rates of health care utilization (Rider et al., 2018) observed in this population. With limited numbers of gender specialists available to support a growing need for gender-affirming care (Korpaisarn & Safer, 2018), pediatricians and other generalist health care clinicians can help bridge this gap by facilitating linkage to care and providing appropriate preventative health care using a gender-affirming approach (Sequeira, Ray, Miller, & Coulter, 2020). Gender-affirmative care embraces gender diversity as normal variations on human diversity and encourages individuals to follow their own path to living authentically 757

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without privileging any outcome other than a sense of wholeness and emotional wellbeing (Coyne, Poquiz, Janssen, & Chen, 2020). Pediatric health care settings are key environments in which clinicians can normalize gender diversity with parents and youth, facilitate gender exploration, and promote resilience through gender-affirming practices.

There are many words used to communicate about different aspects of gender diversity (see Table 75.1). Labels for designated sex at birth and gender identity are often incorrectly used interchangeably. A child is usually designated a sex label of male or female at birth based on the appearance of external genitalia. Sometimes a child is designated intersex

TABLE 75.1  Key Terminology Term

Definition

Cisgender

Describes identifying with the gender corresponding to one’s designated sex at birth (e.g., an individual designated female at birth identifying as a woman or designated male at birth identifying as a man).

Designated sex at birth

The sex label that a child is given at birth most often based on the appearance of the external genitalia but also can include hormones and chromosomes. Most people are designated male or female, and this is what is put on their birth certificate. Of note, more US states now allow for a designation of “intersex” on the birth certificate of children born with variations in chromosomes, hormones, or genitalia that do not fit neatly within binary male-female categories.

Gender

The way cultures categorize and assign social norms to groups of people. These groups are often based on designated sex at birth, but understandings of gender vary across time and culture.

Gender-affirming treatment

Medical or surgical treatments that help a person physically change the body to align more closely with a gender identity. Gender-affirming treatments can include puberty blockers, hormones (e.g., estrogen, testosterone), and surgery.

Gender dysphoria

A diagnosis introduced in the DSM-5 to capture clinically significant distress associated with identifying with a gender different from the one corresponding to designated sex at birth. A person might feel uncomfortable with the physical body or with the social roles associated with a perceived gender. The experience of gender dysphoria is highly individual, and not every gender nonconforming person experiences gender dysphoria.

Gender expansive

Describes gender expression or behavior that differs from traditional or cultural norms associated with designated sex at birth. Gender-expansive people may or may not self-identify as transgender.

Gender expression

Cultures often relate physical appearance, clothing choices, accessories, communication patterns, social roles, and behaviors to gender. The way a person uses these gendered items and behaviors is called gender expression. Gender expression is highly individual and may or may not be reflective of a person’s other identities.

Gender fluid

Describes a nonbinary gender identity that is dynamic and changing, as opposed to being static. Gender-fluid people can move between genders and may or may not use different gender expressions or pronouns at different times.

Gender identity

A person’s innate sense of one’s own gender. This can be the same or different from the gender corresponding to the designated sex at birth. A person could feel like a man, woman, nonbinary, agender, etc., regardless of the designated sex at birth.

Nonbinary

Describes identifying outside of the male-female gender binary. Nonbinary can be used as an adjective or an umbrella term encompassing several different gender identities.

Pronouns

Words used to substitute the name of a person. In English language, pronouns are gendered and can be an important part of someone’s gender expression. Using the appropriate pronouns for somebody can be a way to affirm the gender identity.

Transgender

Describes not identifying with the gender corresponding to one’s designated sex at birth.

Transition

Changes a person makes to one’s own appearance, behaviors, or body to affirm the gender identity. There are different types of transitions. A social transition can include changing one’s appearance or asking others to use a different name and/or pronouns. A legal transition can include changing one’s name and gender marker on government-issued documents such as a birth certificate. A medical transition can include using gender-affirming hormones to induce physical changes that affirm one’s gender identity.

Transphobia

On an internalized level, transphobia refers to the shame or discomfort experienced by transgender and gender-diverse (TGD) people as a result of internalizing stigmatizing messaging. On interpersonal and systemic levels, transphobia can refer to the harassment and discrimination of people based on their perceived gender identity. TGD people experience transphobia in different forms, ranging from internalized self-hatred and bullying to discrimination in medical and legal settings.

DSM-5, Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.

CHAPTER 75  Gender and Its Variation in Youth

when there is variation in chromosomal, gonadal, or phenotypic sex characteristics (also known as a difference in sex development [DSD]). Gender identity, irrespective of designated sex at birth, refers to a person’s innate sense of one’s own gender. Gender identities may be broadly categorized under “cisgender” and “transgender” umbrellas. Cisgender refers to a gender identity that aligns with designated sex at birth. Transgender refers to a gender identity that differs from the gender corresponding to one’s designated sex at birth. Gender expression is the way a person uses physical appearance, clothing choices, accessories, communication patterns, social roles, and behaviors to communicate gender to others. A person’s gender expression may or may not align with designated sex at birth or gender identity. The term gender minority describes transgender people, as well as gender-expansive people who do not self-identify as transgender but have gender expression or gender role behaviors that differ from traditional or cultural norms associated with designated sex at birth. Language around gender diversity can evolve, be highly individual, and change depending on the context. Therefore it is important for health care clinicians to use language used by their patients and correct assumptions accordingly. It is

759

also important to note that gender identity, sexual orientation, and gender expression, though interrelated, are different constructs. As an example, Xander, from the third vignette, identifies a gender identity of nonbinary, a sexual orientation of pansexual, and chooses a hairstyle and clothing that reflect an androgynous gender expression.

GENDER DYSPHORIA Gender dysphoria refers to affective distress due to incongruence between a person’s gender identity and the designated sex at birth. The term also reflects the psychiatric diagnosis in the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) (American Psychiatric Association, 2013), which captures distress and functional impairment associated with gender incongruence. The diagnostic criteria for gender dysphoria differ by developmental stage (Table 75.2). Notably, there remains significant controversy regarding the inclusion of gender dysphoria as a diagnosis in the DSM-5. Despite DSM moving from a framework of identityas-pathology (i.e., “gender identity disorder” in earlier

TABLE 75.2  DSM-5 Diagnostic Criteria for Gender Dysphoria For a diagnosis of gender dysphoria in children, criteria are met if at least two of the following (one of which must be the first criterion) is experienced for at least 6 mo: 1. A strong desire to be or insistence that one is of a gender different from the gender associated with one’s designated sex at birth. 2.

A strong preference for stereotypically feminine clothing in children designated male at birth. A strong preference for wearing only stereotypically masculine clothing and a strong resistance to wearing stereotypically feminine clothing in children designated female at birth.

3.

A strong preference for cross-gender roles in make-believe play or fantasy play.

4.

A strong preference for toys, games, or activities stereotypically used by the other gender.

5.

A strong preference for playmates of the other gender.

6.

A strong rejection of stereotypically masculine toys, games, and activities and a strong avoidance of rough-and-tumble play in children designated male at birth. A strong rejection of stereotypically feminine toys, games, and activities in children designated female at birth.

7.

A strong dislike of one’s sexual anatomy.

8.

A strong desire for the physical sex characteristics that match one’s experienced gender.

For diagnosis of Gender Dysphoria in Adolescents and Adults, criteria are met if at least six of the following (one of which must be the first criterion) is experienced for at least 6 mo: 1. A marked incongruence between one’s experience/expressed gender and primary and/or secondary sex characteristics (or in young adolescents, the anticipated secondary sex characteristics). 2.

A strong desire to be rid of one’s primary and/or secondary sex characteristics because of a marked incongruence with one’s experienced/expressed gender (or in young adolescents, a desire to prevent the development of anticipated secondary sex characteristics).

3.

A strong desire for the primary and/or secondary sex characteristics of the other gender.

4.

A strong desire to be of a gender different from one’s designated sex at birth.

5.

A strong desire to be treated as a gender different from one’s designated sex at birth.

6.

A strong conviction that one has the typical feelings and reactions of the other gender (or some alternative gender different from one’s designated sex at birth).

DSM-5, Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition.

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versions of the DSM) to distress-as-pathology (i.e., “gender dysphoria” in its most recent iteration), some have argued that including gender dysphoria in the DSM at all is antithetical to conceptions of gender diversity as normal variations on human diversity (Davy & Toze, 2018). It is also notable that not all TGD people experience gender dysphoria or meet criteria for it; similarly, not all people who experience gender dysphoria or meet criteria for it identify as TGD. Considering the three vignettes, Joey, in the second vignette, mostly clearly exhibits the level of distress and impairment associated with a diagnosis of gender dysphoria.

GENDER IDENTITY DEVELOPMENT Gender identity development is a complex process shaped by biological, cognitive, social, and cultural factors. Children and adolescents develop an understanding of their gender identity over time in the context of socialization practices in their family, peer groups, and school settings.

Preschool (Ages 3–5 Years) By age 3 years, children acquire the concept of gender, can label other people’s gender, and reliably identify their own gender (Ruble, Taylor, Cyphers, Greulich, Lurye, & Shrout, 2007). Between ages 3 and 5 years, children develop gender stereotypes and gender-typed preferences, which may include preferences for same-gender peers and clothing and toys marketed for their gender. Transgender children resemble gendermatched cisgender children in their gender-typed preferences and gender expression (Olson & Gülgöz, 2018). Children should feel safe to explore preferences for toys, clothing, and activities. Parents can encourage gender exploration, avoid gendering clothing, toys, and preferences (e.g., “That is a girl toy”), and advocate for their child in settings where other adults and children may need information about and guidance around appropriate responses to gender diversity (e.g., at school, with peers or extended family members). Zain, from the first vignette, describes a gender identity of both “boy” and “girl-boy,” and a gender expression that includes preferences for stereotypically feminine clothing (e.g., dresses, movie characters) as well toys and activities that can be categorized as gender neutral (e.g., drawing). Though many children may identify a core, stable gender identity by early childhood, some children like Zain experience their gender in ways that reflect gender fluidity and continue to explore gender as they develop. For parents of children like Zain, health care clinicians can normalize gender fluidity and exploration as part of the process of gender identity development.

Childhood (Ages 6–9 Years) During childhood, caregivers play a central role in shaping how TGD youth share their gender identity with others and express their gender at home, school, and in public. A child’s ability to change pronouns, name, or clothing to match a gender identity is mediated by caregiver acceptance and support. Caregivers’ responses can help or hinder how children navigate conversations about gender identity and expression with

family members, teachers, and community members. Parents are encouraged to follow their child’s lead when exploring the timing and location of changes to names, pronouns, and gender expression. For young children like Zain (see vignette 1) who express clear clothing and toy preferences, we may observe improvement in psychosocial functioning when limits around gender expression are relaxed or removed (e.g., less withdrawn, distressed, and oppositional) (Chen, Hidalgo, & Garofalo, 2017; Durwood, McLaughlin, & Olson, 2017). As part of this process, parents can assess safety in new settings, anticipate potential challenges, and advocate for their children with school staff and family members regarding changes in names, pronouns, or gender expression.

Preteen (Ages 10–12 Years) Among pediatric patients in gender specialty clinics, most recognized gender identity as different from designated sex at birth in childhood or early adolescence (Kuper, Lindley, & Lopez, 2019). For some children, puberty is an inflection point for gender identity exploration as changes in secondary sex characteristics may elicit significant distress and mark the onset or exacerbation of gender dysphoria. The increased distress and withdrawal described by Joey’s parents (see vignette 2) may be associated with the onset of pubertal development and increased anxiety about future development of secondary sex characteristics (e.g., breasts) that are incongruent with Joey’s gender identity. Prior to the onset of puberty, declaring a specific gender identity that differs from designated sex at birth or changing chosen name and pronouns may not be necessary or desired for some children. In Joey’s case, the positive response to being gendered as a boy and growing discomfort with feminizing pubertal development (e.g., breasts, menstruation) warrant further discussions with Joey, parents, and health care clinicians about gender identity and gender dysphoria. Behavioral health clinicians with experience providing gender-affirmative care can help youth like Joey explore gender and facilitate understanding of the range of social (e.g., changing name and pronouns) and medical (e.g., pubertal suppression) interventions available that may alleviate distress associated with gender dysphoria.

Adolescence (Age 13+ Years) Adolescence is a critical period for identity development and substantial physical growth that marks transition from childhood to reproductive maturity. Developing secondary sex characteristics may be uniquely distressing for TGD youth as these bodily changes may heighten incongruence between gender and designated sex at birth. Adolescents prioritize relationships with peers during this developmental period and spend less time with parents as part of the process of self-exploration and individuation. For TGD adolescents like Xander (see vignette 3), peer relationships can provide safe spaces to explore gender identity and experiment with social changes in gender expression (e.g., names and pronouns). These relationships may also act as a buffer against conflict with caregivers who are unwilling to support social transition at home or explore options for medical interventions for gender transition.

CHAPTER 75  Gender and Its Variation in Youth

The process of sharing one’s gender minority identity with parents, or “coming out,” may be challenging or create disruptions in parent-child relationships (Starks & Millar, 2017). Gender minority youth may resist sharing their gender identity because they fear negative consequences of parental rejection (e.g., emotional distress, financial hardship), and many youth do experience parental rejection, loss of support, or social isolation after coming out (D’Augelli, Grossman, & Starks, 2008). Parental rejection (e.g., trying to change gender identity) during adolescence is associated with poor health outcomes (e.g., substance use, depression, and sexual health risk) in young adulthood (Klein & Golub, 2016). In contrast, family acceptance is associated with positive health outcomes (i.e., self-esteem, general health) in young adulthood (Ryan, Russell, Huebner, Diaz, & Sanchez, 2010).

RISK AND RESILIENCE TGD youth experience significant physical and mental health disparities compared to their cisgender peers, including higher rates of depression, anxiety, substance use, suicidality, and self-injurious thoughts and behaviors (Reisner et al., 2015). The gender minority stress model (Hendricks & Testa, 2012), adapted from health disparities work in communities of color (Williams, Lavizzo-Mourey, & Warren, 1994), posits that TGD people experience unique stress due to discrimination and stigma associated with their gender minority identity. The interplay between external (discrimination, victimization, rejection, and nonaffirmation) and internal (internalized transphobia, anticipated stigma, concealment of identity) stressors results in poor physical and mental health outcomes. Stigmatizing and discriminatory experiences (e.g., intentional misgendering in nonaffirming school or home environments; lack of access to safe bathrooms) negatively affect mental health and result in internalizing negative beliefs about one’s identity, anticipation of future stigma, and pressure to conceal one’s identity. Exposure to gender identity–related stressors is linked to major depressive and generalized anxiety disorders (Chodzen, Hidalgo, Chen, & Garofalo, 2019), substance misuse (Day et al., 2017), suicidality and suicide attempts, and school absences and dropout rates (Grossman & D’Augelli, 2007) in TGD children and adolescents. When working with TGD youth and families, it is important to consider other identity-specific factors and associated experiences of interpersonal and systemic stigma and discrimination. The framework of intersectionality (Crenshaw, 1991) highlights the unique experiences with systemic inequity for TGD people holding multiple marginalized identities along the axes of race, ethnicity, sexual orientation, ability, religiosity/spirituality, and social class. For instance, Black TGD youth disproportionately experience poverty and homelessness (James, Herman, Rankin, Keisling, Mottet, & Anafi, 2016), disparities in educational attainment (Bauermeister, Goldenberg, Connochie, Jadwin-Cakmak, & Stephenson, 2016), and barriers to health care (Goldenberg, JadwinCakmak, Popoff, Reisner, Campbell, & Harper, 2019), which increase health risks. Consequently, clinical care with TGD

761

youth should consider intersecting identities while focusing on reducing external and internal stressors and strengthening resilience factors such as family support, community connectedness, and identity pride (Coyne et al., 2020). With parents and youth, clinicians can highlight the importance of family support (Westwater, Riley, & Peterson, 2019), assertive self-advocacy in school settings (Hillier, Kroehle, Edwards, & Graves, 2020), and connections with supportive communities (Austin, Craig, Navega, & McInroy, 2020) to mitigate the impact of gender minority stressors. For TGD youth holding multiple marginalized identities, clinical interventions should explicitly address the effects of stigma, discrimination, and structural factors along multiple axes of oppression and help youth address experiences with discrimination due to intersecting marginalized identities (Poquiz, Shrodes, Garofalo, Chen, & Coyne, in press). Clinicians should refrain from automatically attributing TGD patients’ mental or physical issues to their TGD identity and miss opportunities to provide holistic care (Payton, 2015). Familiarity with gender-inclusive clinical practices can help clinicians to avoid burdening patients with the task of educating their care team about gender diversity in order to access care (James et al., 2016).

GENDER-AFFIRMATIVE INTERVENTIONS Gender-affirming interventions fall broadly within two categories: social and medical/surgical. Social interventions may include therapeutic support around gender exploration and psychoeducation about gender diversity with parents, extended family, schools, and in other social contexts in which TGD children/adolescents spend time. Gender exploration focuses on supporting youth in better understanding their own experience of gender and determine how they are most comfortable expressing gender in different contexts. Psychoeducation focuses on ways to maximize support and affirmation of gender diversity and minimize stigma in family and social contexts. For some youth, a social gender transition may be indicated to reduce gender dysphoria and facilitate living authentically. Social gender transition can be initiated at any developmental stage and involves changing one’s name and/ or pronouns and gender expression (i.e., clothing, hairstyle) to more accurately reflect one’s gender. Social transitions have a positive impact on mental health in TGD children (Durwood et al., 2017; Olson, Durwood, DeMeules, & McLaughlin, 2016) and adolescents (Russell, Pollitt, Li, & Grossman, 2018). Gender-affirming medical and surgical interventions for TGD people vary based on an individual’s age, developmental stage, and treatment goals and are informed by clinical practice guidelines by the Endocrine Society (Hembree et al., 2017) and the World Professional Association for Transgender Health (Coleman et al., 2012). No medical or surgical interventions are indicated prior to a youth starting puberty. Treatment options are provided in a staged manner to youth, with treatments considered reversible offered first prior to treatments considered partially irreversible or irreversible. For pediatric populations, guidelines recommend a multidisciplinary team approach (including a mental health

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clinician) to ensure youth and their parents understand the benefits and potential risks or side effects of medical or surgical interventions (Coleman et al., 2012; Hembree et al., 2017). For TGD youth in early puberty, medications to suppress endogenous sex hormone production may be offered. Gonadotropin-releasing hormone analogs (GnRHa), referred to as puberty blockers, suspend pubertal progression by shutting down the hypothalamic-pituitary-gonadal axis. This prevents gonadal sex hormone production (i.e., testosterone and estrogen). GnRHa are generally considered to be reversible and are intended to provide time for TGD youth to mature and consider fully whether partially irreversible and irreversible medical and/or surgical treatments are aligned with their long-term treatment goals. If GnRHa are discontinued, the hypothalamic-pituitary-gonadal axis will reactivate, and endogenous puberty would progress. For TGD adolescents in the later stages of puberty or TGD adults, gender-affirming hormones (i.e., testosterone or estrogen) may be prescribed to induce desired secondary sex characteristics (e.g., facial hair and voice deepening mediated by testosterone, breast development mediated by estrogen). Gender-affirming hormone treatment is considered partially irreversible. Some of the physical changes are reversible (e.g., fat distribution), meaning that if hormones are discontinued, physical changes would revert back to pretreatment physicality. Other physical changes, however, are irreversible (e.g., breast development, voice deepening), meaning that if hormones are discontinued, hormone-mediated changes would remain. Most surgical interventions, which are irreversible, are offered only to TGD adults and may involve removing undesired reproductive organs (e.g., ovaries/uterus, testicles) and/ or creating desired genital anatomy (e.g., vaginoplasty, phalloplasty). One notable exception is breast/chest surgery, which may be offered to adolescents desiring these procedures who have parental support and consent (Olson-Kennedy, Warus, Okonta, Belzer, & Clark, 2018).

Additional Considerations in Providing Gender-Affirmative Care Neurodiversity in Gender-Diverse Youth The co-occurrence of gender variance and autism spectrum disorder (ASD) among adolescents referred for gender care is well established (e.g., de Vries, Doreleijers, Steensma, & Cohen-Kettenis, 2011); however, more research is needed to characterize the developmental course of gender variance and gender dysphoria among neurodiverse youth (Strang et al., 2018, 2019). Some interpretations of the gender diversity–neurodiversity co-occurrence center on the possibility that neurodiverse youths’ propensity for intense restricted interests could predispose them to develop gender dysphoria if the focus of these interests is directed at gender-related behaviors and concepts (VanderLaan et al., 2015). On the other hand, differences in social communication and interpretation among neurodiverse youth may result in their feeling less pressure to adhere to social norms and conform to

conventional gender stereotypes compared to neurotypical youth, potentially making it more likely that they will express gender diversity. Irrespective of etiologic underpinnings of the gender diversity–neurodiversity co-occurrence, awareness of gender identity and gender exploration may emerge later in development for neurodiverse TGD youth due to the impact of neurodiversity-related communication differences on self-advocacy about gender needs, gender exploration, and desired gender transition (Strang et al., 2018). Neurodiverse TGD youth may need multiple opportunities over time to express themselves in gender evaluations and need ASD-related communication accommodations (e.g., visuals) (Strang et al., 2018). Across development, clinicians can initiate conversations with youth and parents about gender diversity to normalize exploration and the common barriers (e.g., concern about harassment) that might prevent youth from feeling comfortable experimenting with gender expression. Creating safe and accepting environments for gender exploration and expression is particularly important to help youth balance concrete experimentation and abstract aspects of gender identity. Due to difficulties with social awareness and executive functioning, neurodiverse TGD youth may experience challenges planning for transition-related care or how to present as their affirmed gender (Strang et al., 2018). A mental health clinician working with Xander (see vignette 3) could foster discussion about gender history, the relationship between gender identity and gender expression, and strategies for exploring how social or medical interventions might alleviate distress. Discussions with Xander’s parents can normalize gender expression and help to understand Xander’s gender development and genderrelated needs.

Nonbinary Presentations and Medical Transition Nonbinary identities are increasingly common among TGD individuals. Medical clinicians must understand that nonbinary individuals seeking care are not undecided about their gender identity. For nonbinary youth interested in genderaffirming hormone therapy, their specific transition goals may require individually tailored treatment plans (Chen, EdwardsLeeper, Stancin, & Tishelman, 2018). Xander (see vignette 3) is distressed about menstruation and chest development but has not expressed interest in masculine secondary sex characteristics (e.g., deeper voice, body hair). Therefore they may pursue a narrow range of medical interventions (e.g., chest surgery, hormonal management of menstruation) to achieve specific transition goals.

CLINICAL IMPLICATIONS Pediatric health care clinicians equipped with developmentally appropriate and evidence-based information about gender diversity can create gender-sensitive health care practices that support TGD youth and their parents in settings outside of gender specialty clinics. The treatment needs and goals for TGD youth vary across development and depending on context. Health care provided by gender-affirming clinicians is

CHAPTER 75  Gender and Its Variation in Youth

increasingly politicized in the United States and internationally. Efforts to legislate patient care undermine the capacity for youth and their families who seek effective medical care. Clinicians who understand the developmental course of gender identity exploration and identification, and the range of available supports and interventions (social and medical) can reduce stigma and the impact of gender minority stress in health care settings.

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SECTION 9  Assessment and Measurement in Developmental-Behavioral Pediatrics

76 Fundamentals of Developmental, Behavioral, and Psychological Assessment Melissa Armstrong-Brine, Jessica VanOrmer Simpson, and Terry Stancin

For additional material related to the content of this chapter, please see Chapters 3, 40, 47, 48, 77–90.

VIGNETTE Abby is an 8-year-old Hispanic female who presents due to concerns for attention-deficit/hyperactivity disorder (ADHD). After a thorough clinical interview with the help of an interpreter, you learn that Abby is one of five children in the home. She has witnessed domestic violence between her parents, which resulted in a 2-month placement in foster care. Her parents are still married, but her father returned to his home country 5 months ago. Abby and her family are primarily Spanish-speaking, although Abby has been enrolled in an English-speaking school since she was 4 years of age. Her mother explains that Abby has been struggling in school academically for several years and has displayed increasing behavioral difficulties over the previous year. Abby is often shy and reserved; her teachers report frequent off-task behaviors, incomplete assignments, and poor retention of academic concepts. Most recently teachers have noted disruptive classroom behaviors (e.g., she makes inappropriate comments in class, gets out of her seat without permission). At home, Abby ignores her mother’s directions, refuses to complete homework, and leaves daily tasks incomplete. She has recently begun threatening to run away and makes statements such as, “Why can’t I be like other kids?” when confronted with consequences for her misbehavior.

INTRODUCTION TO PSYCHOLOGICAL ASSESSMENT Psychological assessment frequently combines elements of clinical interviewing, record review, psychological testing, observation, and sound clinical judgment. Together these elements form a picture of the patient in a daily context to formulate a diagnosis, guide treatment recommendations, and, often most importantly, assist others in understanding the

patient’s behavior in the greater context of the world around them. Psychological assessment is not a static event that occurs over a single session. It is a multifaceted process, distinguished from psychological screening and psychological testing in its breadth, depth, and level of expertise required to do it well. In general, psychological assessment is composed of several stages or steps. It begins with identifying the referral question, then moves to planning the assessment, record review, clinical interview, observation, direct psychological testing, integration of data and conceptualization, and concludes with feedback to family and referral sources, when appropriate. Comprehensive psychological assessment data are most commonly presented to the family and referring clinician in a written report format that includes relevant background information, current concerns and presenting problems, behavioral observations, testing data, a summary of the interpretation, and data-driven recommendations for next steps and treatment.

Screening Psychological screening refers to the use of measures, usually standardized to some degree, to determine if a condition, trait, or ability is likely to be present in a patient. Screening measures are typically standardized to optimize the rate at which a condition will be identified if it is present. Screening measures require minimal time to administer, score, and interpret, making them ideal to give to a large number of patients in a busy clinic setting. Screening measures can be used to help guide next steps in treatment or to support further evaluation for emotional (e.g., depression, anxiety), cognitive (e.g., intellectual functioning, memory loss), or behavioral (e.g., ADHD, oppositional-defiant disorder, aggressive behaviors) conditions commonly the subject of parental concerns in general and developmental-behavioral pediatric settings. Screening measures should not be utilized as stand-alone measures for purpose of diagnosis because they are intended only to identify patients in need of further evaluation or treatment. Sometimes screening measures can be helpful in tracking treatment outcome by identifying a decrease in the 765

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TABLE 76.1  Psychometric Properties of Screening Measures Screening Measure Properties Term

Definition

Specificity

The proportion of people who get a negative result on a screening measure (i.e., the ability of a test to identify people who do not possess the construct/disease) specifity =

number of true negatives number of true negatives + number of false positives

Sensitivity

The proportion of people who get a positive result on a screening measure (i.e., how well a test can identify people who possess the construct/disease) number of true positives sensitivity = number of true positives + number of false negatives

Positive predictive value (PPV)

The probability that those who get a positive screening test actually possess the construct/disease (i.e., people who test positive and do have the condition) number of true positives PPV = number of true positives + number of false positives

Negative predictive value (NPV)

The probability that those that get a negative screening test actually do not possess the construct/disease (i.e., people who test negative and don’t have the condition) number of true negatives NPV = number of true negatives + number of false negatives

patient’s symptoms or documenting that the symptoms no longer reach a level of broad diagnostic significance. Table 76.1 outlines several psychometric aspects of screeners that are important to know (also see Chapter 81).

Psychological Testing Psychological testing is a lengthier process than screening and includes the use of standardized, norm-referenced measures to identify the level of a patient’s emotional, cognitive, or behavioral functioning compared to other individuals with similar characteristics. Psychological testing focuses on the level of a trait, skill, or ability the patient possesses rather than the presence or absence of that trait, skill, or ability. Psychological testing includes administration, scoring, and interpretation of data by a user with knowledge of the measure’s psychometric properties and limitations, including the standardization process. The clinician is able to effectively consider patterns of data and not just single scores. Psychological tests are often used in combination as part of the psychological assessment process to identify relationships between abilities, behaviors, and traits and the patient’s overall cognitive, behavioral, or emotional presentation. However, neither psychological screening nor psychological testing stand alone to characterize the patient or clarify diagnosis without the personal experience with the patient, context, and clinical judgment inherent in psychological assessment (Srinath, Jacob, Sharma, & Gautam, 2019).

The Purpose of Psychological Assessment The purpose of a psychological assessment can vary greatly by factors, such as patient presentation, clinical setting, and stage of treatment. However, identifying the purpose of the assessment and the specific referral question(s) guides the evaluation process and sets the stage for effective communication

between the clinician, patient, patient’s family, and referral source. Common purposes of testing include assisting with diagnostic clarity, objectively measuring personality characteristics or abilities, and guiding treatment planning. When diagnostic clarification is the purpose of assessment, methods that identify characteristics that support or negate a diagnosis include clinical interview questions, psychological testing, and record review. Assessment methods that distinguish abnormal levels of behaviors, emotions, or cognitive functioning from typical rates are especially useful. For instance, when a diagnostic question of ADHD is the purpose of testing, as for Abby in the chapter-opening vignette, specific questions about ability to follow multistep directions, complete tasks independently, and activity level may be included in the interview; parental report measures of attention and hyperactivity may be completed by parents and teachers; and psychological testing utilizing measures of attentional focus, concentration, processing speed, inhibitory control, and working memory may be administered to the child (Sattler, 2020). Diagnostic assessment processes (e.g., “Does Abby have ADHD?”) can be streamlined to accommodate limited appointment time, provide in-depth information about the patient’s specific condition related difficulties, or identify patients appropriate for specific services. However, diagnostically focused assessments may lack breadth, leading to factors contributing to the child’s presentation being overlooked or underappreciated and missing other appropriate diagnoses that are impacting the patient’s daily functioning. When psychological assessment is used to objectively measure specific characteristics and/or abilities, the focus is often on using normative data to compare an individual to others of a similar age, sex, or academic standing or to track the individual’s progress or decompensation across different time points. While there are a multitude of uses for

CHAPTER 76  Fundamentals of Developmental, Behavioral, and Psychological Assessment

psychological assessment as an objective measure of personal characteristics, some common reasons include generating a list of diagnostic differentials; determining someone’s fit for a particular position, placement, or activity (e.g., return to play after injury, fitness to serve, response to intervention, competency to stand trial); and identifying a baseline of functioning prior to implementation or change in the patient’s condition, environment, or treatment (e.g., presurgical evaluation or prior to initiation of chemotherapy; young child with a condition placing him at high risk for neurologic insult such as hemophilia or sickle cell disease). When the purpose of an assessment is to measure a patient’s personal characteristics or abilities, the assessment may cover a wide range of domains of functioning, include reporters and observations from different settings, and may seek to find variations in a patient’s functioning both compared to normative samples and compared to their own abilities across time. These types of evaluations are often time consuming, but they provide a general overview of the patient’s strengths and weakness and are comprehensive in determining factors that may contribute to or exacerbate their condition. Psychological assessment can also be important as a guide to treatment planning. A combination of diagnostic and objective measurement is often included in assessments when the purpose is treatment planning because recommendations often include both evidence-based, condition-appropriate considerations and factors personal to the patient. Assessment for treatment planning can help to identify treatment goals, including which areas of behavioral, emotional, or cognitive functioning should be targeted in treatment. Psychological assessment can help to elucidate barriers and assets to treatment that can be utilized to guide the selection of one treatment over another or that can be incorporated in treatment to improve outcome. Further, when utilized as a way to track the level of symptoms, functioning, or characteristics over time, assessment can help determine treatment effectiveness and progress over the course of treatment. Particularly in conditions in which treatment is more long term (e.g., trauma, developmental disability) or requires significant medical intervention (e.g., shunt placement, neurosurgery, radiation, chemotherapy), assessment for treatment planning can assist in identifying early cognitive, emotional, and behavioral effects that may not be notable in the daily environment but warrant treatment, as well as symptom resolution or compensation over time so that treatment adjustments can be made accordingly. Psychological assessment is often an integral aspect of eligibility determination for federal and state programing (e.g., Board of Developmental Disabilities, Social Security Disability Income), treatment access (e.g., organ donation, bariatric surgery), inclusion in research studies (e.g., medication trials, condition-specific treatment programs), and academic supports or services (e.g., special education, SAT/ACT accommodations). In this sense, clinicians become gatekeepers to valuable resources that may or may not be appropriate for the patient and require some formal assessment to make an informed, qualified decision. In these instances, specific

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guidelines are often determined by the governing organization that identifies a minimum standard for the criteria that must be met to qualify for services and the type of data needed to determine eligibly. Specific interview questions regarding timing (e.g., symptoms appearing prior to a specific age) or the impact of the patient’s daily functioning, the psychological tests included in the testing battery, and the data needed to support each type of recommendation (e.g., giving additional time to complete the SAT/ACT) may all be covered in eligibility guidelines. Therefore it is vital that the clinician become familiar with eligibility criteria and guidelines prior to initiating the assessment.

TEST DESIGN AND PSYCHOMETRICS Measures utilized in psychological assessment can include symptom checklists and informal procedures intended to provide descriptive information on the patient’s behavioral, cognitive, and emotional functioning. However, psychological assessment most often includes standardized, norm-referenced measures of functioning that allow the clinician to effectively compare the patient’s abilities, skills, and traits to others with similarities in age, educational background, clinical environment, or condition. Standardized, norm-referenced measures have several primary features. First, they are developed and normed under rigorous conditions with large numbers of patients, such as those of clinical trials for medication or devise development. Scores from the normative testing group are subject to statistical analysis allowing for the identification of mean (average) scores and variability in scores across the normative group (e.g., standard deviation). Second, these measures are intended to assess a specific trait or behavior and are not meant to measure other characteristics with any degree of accuracy. Finally, to be accurate, these measures must be administered in the same way, under similar conditions, to patients who have personal traits and backgrounds consistent with those individuals included in the normative sample. Structured administration and scoring procedures are meant to ensure that the measure’s statistical properties can be applied appropriately across clinicians and settings. If any of these conditions is unmet, the test cannot be assumed to be a valid or reliable measure on which to base clinical decisions. It is important to note that standardized measures are not all norm referenced. In a standardized measure, administration and scoring rules are clear and explicit. There may be important environment protocols for testing, such as the elimination of distractions, having a quiet testing environment, and sitting at a table directly across from a patient in a four-legged chair. When a measure has less specific administration and scoring guidelines, the assessment tool is said to be unstandardized. Standardized measures can look at a patient’s performance in a valid and reliable manner across time but do not allow a clinician to compare the patient’s performance to others unless they have been subject to the normative process. See American Educational Research Association, American Psychological Association, and National Council on Measurement in Education (2014), Frick, Barry, and

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Kamphaus (2020), and Sattler (2020) for additional and more detailed information on standardization practices of psychological assessments. Norm-referenced tests allow for comparison of an individual to other individuals with similar characteristics based on a normative curve, most often the bell curve. This allows the clinician to identify to what extent the patient’s ability, characteristic, or behavior falls within normal limits as represented by the middle of the curve or outside of the normal limits as represented by the tails of the curve. Fig. 76.1 illustrates a typical bell curve and the percentage of people who fall within each area of the curve. However, prior to this interpretation, it is important to consider who was included in the normative sample of the test. Many assessment measures include information about the type (e.g., ethnic background, family composition, socioeconomic status) and number of people who were used in the research to establish a measure’s accuracy, consistency, and useful. In addition to information included in a testing manual, researchers frequently examine the accuracy and consistency of a measure with underserved or unrepresented populations. Therefore conducting a good literature review can be helpful for patients who may not have been included in the normative sample. Of course, not every ethnicity, sexual orientation, or other areas of diversity are included in a normative sample of a measure, and research may not exist with some diverse populations. The greater the discrepancy between a patient and the norming group in terms of personal characteristics and history, the less valid an assessment tool is for use with patient decisions. Therefore it is up to a clinician to be clear in the interpretation of results or declare that results need to be interpreted with caution. For information on the

Percent of scores under each portion of the normal curve Standard deviations (Z scores)

0.13% 4

Standard score (mean of 100, standard deviation of 15) T scores

Stanine Percent of scores in each stanine Normal curve equivalent (NCE) Fig. 76.1  Normal distribution.

1

types of scores made in norm-referenced interpretations see Table 76.2.

Reliability When selecting tests to include in a psychological assessment it is important to consider the test’s reliability. Reliability refers to the degree to which scores from a test are consistent and free from the effects of measurement error. There are a variety of forms of reliability in regard to the psychometric properties of a test (Table 76.3). Choosing the method of estimating a test’s reliability depends on the nature of the assessment measure. One component of a test’s reliability is internal consistency. Two main methods for evaluating internal consistency involve administering the test once to a single group of examinees: the split half method and the use of a Cronbach coefficient alpha. The split half reliability method considers whether a test measures a single construct by dividing it into equal halves (e.g., first items vs. last items, odd vs. even numbers) and examining the degree to which results from the halves are correlated. The use of split-half reliability can underestimate a measure’s true reliability because as a test length is shortened, reliability correlations tend to decrease. In contrast, a Cronbach coefficient alpha utilizes a special formula to examine the average degree of inter-item consistency. This special formula can be thought of as the average reliability from all possible ways of splitting the test. The use of a Cronbach coefficient alpha is more conservative, considered the lower boundary of a measure’s reliability. Cronbach coefficient alpha ranges from 0, meaning there is no reliability, to 1.0, indicating perfect reliability. The general rule of thumb is that a Cronbach coefficient alpha of .80 or above is appropriate for clinical and psychological testing measures with reliability coefficients approaching or above .90

2.14%

2.14% 13.5%

34.2%

3

2

1

55

70

85

20

30

40

34.2%

13.5%

1

2

3

100

115

130

145

50

60

70

80

1

2

3

4

5

6

7

8

9

4%

7%

12%

17%

22%

17%

12%

7%

4%

10

20

30

40

50

60

70

80

90

0.13% 4

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CHAPTER 76  Fundamentals of Developmental, Behavioral, and Psychological Assessment

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TABLE 76.2  Types of Standardized Scores Types of Scores for Norm-Referenced Interpretation Type of Score

What It Is

Statistical Formula

Example

Percentile rank (PR)

Percentage of people in the norm sample who achieved lower scores

 M + (0.5 × R )  × 100 PR =   Y  

A percentile rank of 65 indicates that 65% of the norm sample performed lower than the patient

Standard score

Typically has a mean of 100 and a standard deviation of 15

Population mean

IQ tests often use standard scores; a standard score of 85 indicates a patient performed 1 SD below the norm sample

∑ xi

µ=

N

Sample mean X =

∑ xi n

Population standard deviation 2

σ =

∑ (x − µ) N

Sample standard deviation 2

s =

T-score

A standard score, where the mean is 50 and the standard deviation is 10

Z-score

A standard score where the mean is 0 and a standard deviation is 1

Stanine score

A standard score where the distribution is divided into nine parts; mean is 5 and the standard deviation is 2

∑ (x − x ) n −1

t =

x −µ σ n

On the BASC-3 a T-score = 75 on the Inattention Scale is 2.5 SD above, indicating clinical significance

Z =

x −µ σ

A Z-Score of 1.5 on a reading accuracy measure indicates patient performed better (i.e., 1.5 SD above the norm sample)

N/A

If a patient’s stanine score on an inhibition task is 2, the patient is 1.5 SD below the norm sample, which could indicate issues with inhibiting patient’s responses

TABLE 76.3  Reliability Types of Reliability Term

What It Means

Internal consistency

Measures whether test items measure the proposed general construct of the test (i.e., does it measure what you want it to?)

Way To Measure Split half method or Cronbach alpha:

V  K  1 − ∑ i  α =  K − 1 VT 

Interrater reliability

Degree of agreement among raters

Percentage agreement Correlation coefficient

Test-retest reliability

Measures test consistency or repeatability of a test (i.e., when a measure is given to the same people twice, are scores similar?)

Correlation coefficient

being excellent (Sattler, 2020). Reliability between .79 and .60 is adequate, but any reliability coefficient below .60 indicates the measure lacks reliability. Another form of measuring a test’s reliability is to examine the interrater reliability. Interrater reliability applies only to assessments that include a subjective scoring component that

depends on a rater’s judgment, such as a behavioral observation scale or projective personality test. Interrater reliability is calculated using either a correlation coefficient or percent agreement on scores/ratings between two or more raters. The kappa statistic is a type of correlation coefficient used when the scores on a test are on a nominal or ordinal scale of

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measurement and there are two raters. In contrast, the use of a percent agreement is calculated by dividing the number of items/observations that raters agreed on by the total number of items/observations. Many structured behavioral observation assessments suggest a clinician demonstrate at least 80% interrater reliability prior to administering the test on one’s own to ensure they are reliable in administration. Lastly, the test-retest method of reliability is estimated by administering a test to the same group of examinees on two separate occasions and then correlating the two scores. This correlation coefficient indicates the degree of stability/consistency of a patient’s scores over time and is appropriate for tests that assume an attribute is stable over time, unaffected by previous exposure to test items (e.g., cognitive ability). In contrast, it would not be appropriate to use a test-retest reliability correlation coefficient on an assessment of mood due to fluctuations over time, or creativity, which might be affected by having previous exposure to items on the assessment. However, it is important for clinicians to be aware of when a test is appropriate to be readministered, as many have rules on how frequently the same version of a test can be given to a patient. Some assessments have alternative forms available that measure the same areas but contain different test items to avoid the pitfalls of repeat administration. There are several factors that can impact a measure’s reliability (Table 76.4). These factors are important to consider when selecting an assessment measure and when interpreting scores to determine whether the scores are reliable for that particular patient (American Educational Research Association et al., 2014; Sattler, 2020).

TABLE 76.4  Threats to Reliability Some Threats to Reliability Threats

How So?

Length of test

When a test is longer in length it helps minimize the effect of measurement error. Therefore, typically the longer the test length, the larger the reliability coefficient.

Range of scores

When norming a test, the degree of similarity between examinees on the attribute being measured affects the reliability. For instance, if all items are really difficult or really easy, all examinees obtain similar scores, thus resulting in a restricted range of scores.

Guessing

As the probability of a patient correctly guessing answers on a measure increases, the reliability of the measure decreases.

Patient/ environmental characteristics

Natural changes in a patient or the environment can impact reliability. These include factors such as the patient’s emotional/social functioning and physical health as well as environmental factors that include historic events and changes in societal rules/expectations.

Administration of test

If an examiner does not follow proper protocol for an assessment, administration instructions are poor in quality, or the measure requires subjective scoring, then reliability decreases.

Validity After establishing a test is reliable, it is vital to ensure an assessment measure has adequate validity for its purpose. A test’s validity refers to the degree to a which a test measures what it has been designed to measure (i.e., the accuracy of the test) (Table 76.5). Construct validity determines the extent to which a test measures a hypothetical trait or abstract characteristic that cannot be directly observed and is inferred by observing its effects. Convergent and divergent validity are used to establish construct validity by comparing a measure’s correlations with other measures of similar and dissimilar constructs. When a measure has a high correlation with an assessment tool that measures the same construct or related traits, there is evidence for convergent validity. In contrast, low correlations with tests of unrelated constructs/characteristics provide evidence of divergent validity. For example, a test measuring aggressiveness should have high correlations with other measures of aggressiveness; however, a clinician would want the aggression measure to have lower correlations with measures of assertiveness as these constructs are theoretically different. Face validity is the extent to which a measure appears to cover the purpose of the assessment (i.e., the transparency of a test to the participants). When a test has high face validity it may mean patients are aware of what the test is trying to measure. This feature can sometimes lead patients to change

TABLE 76.5  Summary of Validity Types of Validity Term

What It Means

Construct validity

Assesses whether a test measures what it is supposed to. Methods to assess construct validity: • Internal consistency • Factor analysis • Group differences • Convergent and divergent validity

Convergent validity

Measures how much a test is similar to other tests of the same construct

Divergent validity

Measures how much a test is dissimilar to other tests of a different (likely unrelated) construct

Face validity

Degree to which a test is subjectively viewed as covering the concept it is supposed to measure

Predictive validity

Degree to which an assessment tool predicts performance on a criterion/test later on

Concurrent validity

Degree to which an assessment tool predicts performance on an existing measure/ criterion

CHAPTER 76  Fundamentals of Developmental, Behavioral, and Psychological Assessment

their responses to either fake bad (i.e., present themselves in a more unfavorable light) or fake good (i.e., present themselves in a more favorable light). However, tests with low face validity may result in a patient being confused why the test is administered or disagreeing with the results. The extent to which test scores can be used to make conclusions about a patient’s performance or status on another measure is known as criterion-related validity. There are two main forms of criterion validity: predictive validity and concurrent validity. Predictive validity refers to an assessment tool’s ability to predict a construct, performance, or status in the future. For example, a clinician may want to know whether a patient’s performance on an academic test would predict how the patient will perform in school in the upcoming year. Concurrent validity is similar but concerns a measure’s ability to predict current status or performance, such as whether an academic test accurately estimates how a patient is performing currently in school. There are several factors that can impact a measure’s validity and the validity of psychological administration of measures, which can influence how measures are interpreted (Table 76.6). For more information on the validity of psychological testing, see American Educational Research Association et al. (2014) and Sattler (2020).

Test Construction Theories and methods of test construction are complex and well outside the scope of this chapter. However, a basic understanding of the theories of test construction is helpful in understanding the ways a test is developed, organized, and found to be reliable and valid. Two theories of test construction are frequently discussed in the research literature and technical manuals of testing measures: classical test theory and item response theory. In applying both theories, questions, items, or tasks are developed, often by a panel of experts, that are thought to measure the construct of interest. A subset of those questions is identified, often through expert consensus, as the best to utilize. That subset is then subject to the normative processes in which hundreds or thousands of individuals answer the questions or complete the tasks. Statistical analyses are utilized to determine the distribution of scores across the sample, reliability, and validity. Readers interested in learning more about test construction should see American Educational Research Association et al. (2014) and Sattler (2020). Test publishers must update tests regularly due to a variety of threats to reliability and validity that occur over time. Societal changes that impact variables, such as the quality and type of visual stimuli familiar to individuals, specifics of common knowledge, and vernacular (e.g., slang words that may be acceptable responses, phrasing of questions), are considered when updating and renorming a measure. An additional statistical catalyst for updating a test stems from a phenomenon called the Flynn effect, in which average scores on specific performance-based measures, particularly intellectual measures, increase over time. In general, an increase of about 0.3 standard score points occurs each year from the time the

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TABLE 76.6  Threats to Validity Some Threats to Validity Threats

How So?

Time between testing

Significant time between testing sessions may result in possible changes in the patient due to natural maturation, new symptoms or ailments, or changes in the environment, all of which affect how the patient performs in testing. Practice effects from taking the measure or a similar measure too closely in time also impact validity. Follow an assessment tool’s guidelines for when a measure can be readministered.

Lack of representation in norming sample

A patient’s personal characteristics such as race, socioeconomic status, language, or education level are considered to determine if the normative data included individuals with similar traits. If the normative group lacks aspects of the patient’s diversity, it may be inappropriate to compare the patient to that group.

Biases in test items

Some items may assess skills or knowledge obtained through particular experiences (e.g., formal schooling), which could result in a patient who has not had those experiences performing differently than the normative group.

Criterion contamination

This occurs when a knowledge of how a patient performed on a previous measure or testing affects how they are rated on another measure.

Deviation administration of test

If examiner does not follow proper protocol for an assessment (i.e., improper scoring, distractions in the room, poor instructions), an assessment tool becomes less valid.

test was initially normed. While this change may not seem significant on the surface, it has strong implications for clinical practice particularly when considering high-stakes areas of evaluation, such as diagnosis of intellectual disability for eligibility determination or assessment for competency to stand trial or face maximum penalty in the justice system. Testing experts have suggested that the Flynn effect has been receding over time and is less of an issue today than it was 2 or 3 decades ago. However, recent research has not supported this claim and has confirmed a continued increase of approximately 3 points per decade since 1972 as evidenced by a meta-analysis of 52 well-executed studies (Trahan, Stuebing, Fletcher, & Hiscock, 2014). For clinical purposes it is important to be aware of the Flynn effect for two reasons. First, a patient’s score will likely increase on the same test over time due to a combination of practice effects and the Flynn effect. Second, a score decrease

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is expected when an individual is given an updated version of a test; the score on the Wechsler Intelligence Scale for Children, Fifth Edition, (Wechsler, 2014) will likely be lower than the score on the fourth edition, even if the tests are administered in close temporal proximity to each other. The Flynn effect also supports the need to use only the most recent version of a test for clinical purposes.

where details of each aspect of the evaluation are refined as additional information is collected. For instance, the evaluation planned for Abby, in the vignette, who was referred for concerns of attention, might have seemed straightforward until interviews with the family also indicate concerns for trauma and learning problems that must be accommodated in the assessment plan.

COMPETENCIES TO CONDUCT ASSESSMENTS

SOURCES OF ASSESSMENT DATA

Competence to conduct psychological assessments requires expertise, clinical skills, and a solid understanding of psychometric statistics, standardization procedures, and interpretation methods. Personal review of testing measures and technical manuals, even when thorough, is only one step in the process of becoming competent in psychological assessment. Coursework in statistics and test development, practice with an already expert testing administrator, and close supervision in the administration of measures and data interpretation are vital aspects of building assessment skills. These training opportunities are key components of all clinical and school psychology training programs and can be sought by long-term consultation with experts in psychological assessment and specific training opportunities through conferences and testing companies. In addition to standard expert training, some assessment measures require specialized training in the form of workshops or long-term supervision. This requirement is most often the case when there are only semistructured administration instructions or there are subjective components of scoring. Examples of measures requiring specialized training are the Autism Diagnostic Observation Schedule, Second Edition, and the Exner System for the Rorschach Inkblot Test (Exner, 1974). Additionally, many experts in psychological assessment find that they need to review each measure to refresh themselves on specific psychometric properties and administration procedures every few years because of natural tendencies to forget details or include more personal approaches to test administration, scoring, and interpretation. The natural loss of detail and gradual introduction of nonstandardized testing practices is referred to as examiner drift and is just one of many common threats to validity and reliability in psychological assessment (American Educational Research Association et al., 2014).

The clinical interview is the most frequently used evaluation procedure and often the initial step taken when conducting a comprehensive psychological assessment. Thorough clinical interviews are used to obtain historical data on a patient (e.g., presenting concerns, frequency of behaviors, academic information, birth and developmental history), provide the foundation to establish a collaborative relationship with the family, and are useful for case formulation and treatment planning. Clinical interviews may be loosely structured or more standardized and highly structured, requiring the clinician to ask specific questions in certain ways. Loosely structured clinical interviews for child and adolescent assessments may serve as an intake, typically with a parent or guardian of the individual, who can provide the necessary historical background. Depending on the patient’s age, a child may also participate during or in parts of the clinical intake interview. Although unstructured interviews provide flexibility during the interview process, they rely heavily on the expertise and knowledge of the clinician who conducts them. Their validity and reliability rely on the skill and accuracy of the clinician to ask appropriate initial and follow-up questions. In contrast, semistructured and structured interviews have specific questions often with standardized wording, cover specific domains, and follow a standardized format. Several semistructured and structured interviews are designed to assess a broad range of psychological symptoms, such as the Schedule for Affective Disorders and Schizophrenia for SchoolAge Children (K-SADS; Ambrosini, 2000). Other structured interviews are used to assess a specific concern or cluster of symptoms, such as the Autism Diagnostic Interview–Revised (ADI-R; Rutter, LeCouteur, & Lord, 2003). Although semistructured and structured interviews can be beneficial by standardizing the interview process, allowing for reliability among clinicians, they can be time consuming and sometimes constraining on clinicians depending on the degree of structure provided in the interview (see Chapter 77 for more on interviewing).

ASSESSMENT PLANNING An assessment plan is essential to conducting a comprehensive, organized assessment that will answer specific referral questions posed by the family and referring clinician. Once the referral question is clear and confirmed with all parties, the clinician must turn attention to identifying the best process for answering the referral question and generating a hypothesis as to what may be contributing to the aspects of the patient’s presentation that are the subject of the referral question. Assessment planning often progresses in phases

Interview

Observations Direct behavioral observations of a patient are an important source of assessment data and can be unstructured or structured. Assessment observations can be made during clinic evaluations, while the patient is in the waiting room (e.g., how the child interacts with others in the waiting room), or when the patient is in other natural settings such as at school.

CHAPTER 76  Fundamentals of Developmental, Behavioral, and Psychological Assessment

Observations described in a psychological assessment may include effort/motivation, language abilities, attention, social behaviors, thought process, affect/mood, motor control, and behavioral concerns. These observations often help determine if factors such as fatigue or limited compliance may impact the validity of test results. In contrast, structured observational assessment addresses specific behaviors that are important for diagnosis or treatment monitoring and can be normative or unnormed. Unnormed behavioral observations are typically individually designed to measure specific behaviors or symptoms that are the subject of assessment and often focus on factors such as the circumstances just prior to or after the target behavior, frequency, or duration of the behavior. A functional behavior analysis is an example of an unnormed semistructured observation. Structured normative observations allow a clinician to determine the significance of the child’s behavior in comparison to the general or condition-specific population. Norm-referenced observations typically require specific training to learn the assessment procedures and frequently require supervision of administration, scoring, and interpretation to ensure the clinician is providing observation data that are clinically reliable and valid. For example, the Autism Diagnostic Observational Schedule, Second Edition (ADOS-2; Lord et al., 2012) is a standardized, norm-referenced measure of ASD-related behavior (see Chapter 84 for more on behavioral observations).

Caregiver and Self-Report Measures Many psychological assessments include measures completed by the patient, parents, teachers, or others who can provide insight into a patient’s concerns and inform the case conceptualization. These report measures may entail having the informants rate the frequency of certain behaviors, how true they feel a statement is in relation to the patient, or whether they think a specific statement/behavior/symptom is true or false. Report measures vary on many internal qualities such as reading level, length, informant options, and time reference (e.g., last 6 months, when the child was 4–5 years of age). However, one of the most important factors to consider is the appropriateness of the informant to complete the measure because personal, situational, and measure-specific qualities can impact the validity of the report. For instance, reading level, familiarity with the child, differing demands of environments (e.g., school vs home), and characteristics of the normative sample can all impact the choice of informant (see Frick et al. [2020] and Chapters 81–82 for more on report measures).

Broadband Versus Domain Report Measures One common distinction made in considering the selection of a report measure lies in the scope of behaviors measured. A broadband report measure evaluates a variety of behaviors (e.g., attention, depression, parenting stress) rather than a specific area, allowing the clinician to consider the breadth of the patient’s symptoms and behaviors. Broadband report measures used during psychological assessments include

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the Behavior Assessment System for Children, Third Edition (BASC-3; Reynolds & Kamphaus, 2015) and the Child Behavior Checklist (CBCL; Achenbach & Rescorla, 2001). Broadband measures are often helpful in narrowing the type of symptoms a patient experiences although in a somewhat shallow manner. Domain-specific measures are restricted to specific symptom areas, often those important to determining the type or severity of symptoms related to a condition or area of functioning, for a more in-depth analysis of an area of concern. Domain-specific measures are often very helpful for treatment planning, symptom monitoring, or identification of specific patterns of behavioral concerns. For example, the Behavior Rating Inventory of Executive Functioning, Second Edition (BRIEF-2; Gioia, Isquith, Guy, & Kenworthy, 2015), is a domain-specific measures that provides a rating for a parents’ perceptions of their child’s executive functioning at both global and ability-specific levels. However, the limitation of these measures includes their lack of breadth in the range of behaviors they measure. Often many psychological assessments include both a broadband measure and domainspecific measures in particular areas of concern to gain a full picture of the patient’s behavioral functioning.

Performance-Based Measures Clinicians conducting a comprehensive assessment typically include performance-based measures in their testing plan. Performance-based measures, including standardized intelligence and achievement tests, require patients to complete tasks in the assessment environment to determine how they perform in comparison to others (i.e., norm referenced) or in regard to a specific skill (i.e., criterion referenced). Test selection is a nuanced skill as numerous factors must be considered when developing the testing plan, including patient characteristics (e.g., diversity factors, limitations to functioning, attention span), the child’s previous testing experience, and expertise of the clinician in accurately administering and scoring particular testing measures.

INTEGRATING INFORMATION The interpretation and integration of data sources are perhaps the most difficult aspects of the assessment process. To be successful and thorough in data interpretation, wellsupervised clinical experience is needed to recognize both common and patient-specific variations in data while integrating that data with patient factors and other sources of information. For the sake of brevity, two specific and basic types of data interpretation will be discussed in this chapter: normative variation and internal variation in performance. It is important to recognize, however, that some higher levels of data interpretation exist, including recognition of diseasespecific patterns in data and neuroanatomic correlations of data patterns, and are often included in the work of experts in the fields of neuropsychology and neuroscience (see Sattler [2020] Semrud-Clikeman & Ellison [2009], ], and Chapter 87 for further details).

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Interpretation of normative variation refers to the process of comparing a patient’s scores on norm-referenced measures to those of other individuals of the same age, grade, gender, or some combination of those factors. This level of interpretation allows one to consider absolute or normative strengths and weaknesses of the patient compared to what is considered the standard of ability or skill for the general population (as defined by the normative sample). When a child’s scores fall well outside of the average range in a particular area, we can consider that area to be either a cause for concern, as is the case of a very low IQ score suggesting intellectual disability (see Chapter 40), or a factor that may suggest resilience or special ability, as in a superior IQ score, suggesting giftedness (see Chapter 48). These strengths and weaknesses can be integrated with history and context to support specific diagnoses or treatment options. In contrast, internal variation in performance across or within domains of functioning is used to identify areas where a child shows personal strengths relative to other abilities. Strengths or weaknesses identified in this type of analysis are often called relative due to their relationship to the child’s other areas of functioning as opposed to the general population. Internal variability in scores is important to recognize for several reasons. First, variability across or within specific domains, such as attention, can direct the clinician more specifically to the basic skill or ability that requires targeted treatment or can be relied on for compensatory strategies. For instance, a child who has impaired ability in the specific areas of selective attention and attention shifting will likely show improved academic performance if provided a variety of environmental accommodations to support the ability to locate information to which the child needs to attend and strategies to help the child prepare for upcoming transitions. Secondly, internal variation in scores can assist with diagnostic clarification and treatment planning when a child’s abilities appear evenly distributed compared to population norms but are variable within the child’s overall score profile. For instance, standard scores of 112 and 86 are both within the average range of the normative sample but represent significantly different levels of ability for the child and should be interpreted as such. Finally, internal variation in scores is vital to identifying the validity of cumulative, composite, or index scores. A 70 full-scale IQ in a child who receives a 63 on the verbal comprehension index with a 101 on the visual spatial index should not be considered a valid overall estimate of ability because of the extreme variability in performance. This type of variability often points to a clear deficit associated with a specific condition or indicates that patient (e.g., motivation, alterations in awareness) or environmental (e.g., extraneous noise, administration/scoring error) factors are impacting the test’s validity. One additional consideration when performing a basic interpretation of testing scores lies in the concepts of statistical versus clinical significance. Statistical significance is identified when scores on performance-based tests vary from the normative group, including differences between subtests scores in a particular domain or index score comprising a

composite scale. While these types of statistical differences are important to note and explore during interpretation, they may not be cause for concern. Instead, the clinician must consider whether the difference noted is unusual in the population, thus signaling an unusual pattern of ability or skills. As a general rule, a statistical difference is not considered to have clinical significance unless it occurs in less than 10% to 15% of the population (Sattler, 2020). This difference in statistical and clinical significance again highlights the importance of assessing data in the meaningful context of both population norms and patient-specific factors (Frick et al., 2020; Sattler, 2020). Abby’s presentation raises many assessment considerations and challenges, including language, appropriateness of normative data, access to appropriate testing measures, historical events that may confound behavioral reports, informant characteristics, and her ability to maintain attention and compliance in testing. For example, given her bilingual status, which language will be most appropriate for testing? If Spanish is her dominant language, what valid and reliable Spanish language measures are available? Are available measures culturally translated or direct translations of English measure? What is the impact of using an interpreter on the validity and reliability of testing? Are bilingual Latinx children appropriately represented in the normative data? Is there any published research on the performance of children from Latinx backgrounds on the measures to be used? Has Abby received any past testing? If so what measures were utilized? How long ago did testing take place? Will measures of ADHD symptoms be confounded by trauma or anxiety? Does her mother have reading skills at a level that will allow her to reliably respond to parent questionnaires, or will questionnaires need to be presented orally? An assessment plan will need to take all of these challenges into consideration to select appropriate measurement strategies and to synthesize results into recommendations using valid interpretations.

CONCLUSION Psychological assessment is a complex process that applies clinical knowledge in human development and behavior and patient history with a solid awareness of psychometrics, standardized test administration, and data interpretation to build a complex conceptualization of the patient. To provide effective psychological assessment, a clinician must have specific training and expertise from coursework or test manual review, further refined and developed through guided practice and supervised experience. Psychological assessment has a variety of clinical applications, including diagnostic clarification, treatment planning, and tracking changes in abilities across time for purposes of monitoring outcome or quantifying progression of degenerative conditions. In the following chapters, the reader will find in-depth discussions of many of the components of psychological assessment as well as the types of psychological assessment commonly utilized in the clinical setting.

CHAPTER 76  Fundamentals of Developmental, Behavioral, and Psychological Assessment

REFERENCES Achenbach, T. M., & Rescorla, L. A. (2001). Manual for the aseba school-age forms and profiles. University of Vermont, Research Center for Children, Youth, & Families. Ambrosini, P. J. (2000). Historical development and present status of the schedule for affective disorders and schizophrenia for school-age children (K-SADS). Journal of the American Academy of Child & Adolescent Psychiatry, 39(1), 49–58. https:// doi.org/10.1097/00004583-200001000-00016 American Educational Research Association, American Psychological Association, & National Council on Measurement in Education, (2014). Standards for educational and psychological testing. Author. Exner, J. E. (1974). The Rorschach: A comprehensive system. Wiley. (vol. 1). Frick, P. J., Barry, C. T., & Kamphaus, R. W. (2020). Clinical assessment of child and adolescent personality and behavior (4th ed.). Springer International Publishing. https://doi. org/10.1007/978-3-030-35695-8 Gioia, G. A., Isquith, P. K., Guy, S. C., & Kenworthy, L. (2015). Behavior rating inventory of executive function (2nd ed.). PAR Inc.

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Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. (2012). Autism diagnostic observation schedule (2nd ed.). Western Psychological Services. Reynolds, C. R., & Kamphaus, R. W. (2015). Behavior assessment system for children (3rd ed.). Pearson. Rutter, M., LeCouteur, A., & Lord, C. (2003). Autism diagnostic interview-revised manual. Western Psychological Services. Sattler, J. M. (2020). Assessment of children: Cognitive foundations and applications (6th ed.). Jerome M. Sattler Publisher, Inc. Semrud-Clikeman, M., & Ellison, P. A. T. (2009). Child neuropsychology: Assessment and interventions for neurodevelopmental disorders (2nd ed.). Springer International Publishing. https://doi.org/10.1007/978-0-387-88963-4 Srinath, S., Jacob, P., Sharma, E., & Gautam, A. (2019). Clinical practice guidelines for assessment of children and adolescents. Indian Journal of Psychiatry, 61(2), S158–S175. https://doi. org/10.4103/psychiatry.IndianJPsychiatry_580_18 Trahan, L. H., Stuebing, K. K., Fletcher, J. M., & Hiscock, M. (2014). The Flynn effect: A meta-analysis. Psychological Bulletin, 140(5), 1332. Wechsler, D. (2014). Wechsler intelligence scale for children (5th ed.). Pearson.

77 The Interview in DevelopmentalBehavioral Pediatrics John C. Duby, Kelly Blankenship, and Mary Beth DeWitt

For additional material related to the content of this chapter, please see Chapter 91.

VIGNETTE Jackson is a 27-month-old boy who was referred by his pediatrician due to concerns about delayed language and possible autism spectrum disorder (ASD). Jackson failed the MCHAT-R at his 24-month visit after his maternal grandparents raised concerns about his development. The clinician looked directly at parents warmly and simply said, “Share with me what brings you in today.” His parents recount that he failed the screening test and then quickly add they have heard that boys are frequently late talkers and father did not talk until he was 3. They do not feel there is anything to be concerned about and came today because of the pressure from grandparents. Your observations indicate significant concerns with social interaction, social communication, and restricted and repetitive behaviors consistent with a diagnosis of ASD. The clinician considers how to begin the interview to assure the parents about objectivity and support.

The art of the medical interview is an essential skill for success in the practice of developmental-behavioral pediatrics. Often, an accurate diagnosis becomes evident largely based on the information that is gathered in the interview, which is then augmented by the physical examination and formal developmental and behavioral assessment (Chapters 76, 78, and 90). Steven Cole and Julian Bird wrote a hallmark text on the medical interview, proposing that the interview has three objectives: (1) developing rapport and responding to patients’ emotions; (2) gathering data to understand the patient, including biomedical and psychosocial information; and (3) educating and motivating patients. Further, addressing all aspects of the patient and family as unique, with their own values beliefs, will lead to both better health for the patient and greater satisfaction for the clinician (Cole & Bird, 2014).

INITIATING AND SUPPORTING THE RELATIONSHIP Clinicians launch their unique role as family health advisors as they begin the initial interview. Our relationship 776

with others is the foundation of all interaction, and in each visit (American Academy of Pediatrics, 2011). The interview is the initial opportunity to build the therapeutic alliance with families we serve and to establish our common goal, to promote optimal growth and development in children (Shah & Ribaudo, 2018). Establishing this alliance is a skill that should be developed, continually evaluated, and maintained. It can and must be taught and facilitated in medical and professional training programs (Levetown, 2008). In fact, it is identified as an art, which requires practice under supervision during its development (Wender, 2009). The clinical-patient relationship and communication is one of the strongest predictors of outcome during a medical visit. Communication skill influences patient disclosure, treatment adherence, and outcomes. At the heart, the interview requires warmth and trust. As clinicians, we must embrace the alliance and recognize that parents and families are the expert regarding themselves and their children. They, like the family in the vignette, may present with strong emotions, uncertainty, and fear. Clinicians should “walk with” families during these visits, and not lead by a predetermined agenda (Wender, 2009). They should not limit discussion to initial concerns but rather follow the families or patients through their journey. Trainees may be initially preoccupied with the task of obtaining answers to a list of questions and may fail to listen or recognize cues in others (Levetown, 2008). It is critical for clinicians to examine their own biases to ensure that all patients know that they are welcome, that they will be treated with mutual respect, and that high-quality care will be delivered regardless of background using family- and patient-centered care (Trent, Dooley, & Dougé, 2019). To facilitate a positive relationship, the clinician should, at a basic level, consider the influence of the clinical setting itself, as setting can contribute to comfort and ease. Ideally, the clinician should be seated and aligned with families, not seated behind a desk or computer. Eye contact should be utilized to facilitate the connection. Families should be comfortable, with adequate seating for caregivers and their support, as well as child-sized chairs and friendly activities. A common but essential tool to develop and maintain the therapeutic alliance is active listening. This skill includes our nonverbal cues of looking and acknowledging through gestures, but also includes open-ended questioning, with reflective and clarifying statements. Barriers to active listening may

CHAPTER 77  The Interview in Developmental-Behavioral Pediatrics

include time pressures and clinician discomfort with emotional or challenging encounters. Listening is a key component of empathic support. Simple communication skills such as asking questions about psychosocial issues, making supportive statements, and listening attentively will increase disclosure of sensitive information (Wender, 2009). A clinician’s expressed interest and support—using open-ended questions such as “How are things going for you as parents?”—can be tremendously valued. Validating stress can open the door for discussion (Duby, 2018; Pickles, Lihn, Boat, & Lannon, 2020). Other examples of open-ended questions to guide conversation include, “What changes have you seen in your child’s health/development?” and “What bad, sad, or scary things may have happened to you or your family?” (Duby, 2018). Barbara Korsch, a respected pioneer in developmentalbehavioral pediatrics, guides us to facilitate dialogue and elicit concerns early in the visits as well as to establish parental and child expectations for the visit (Korsch, 2011). Clinicians should guide but not dominate the interaction and should show courtesy and warmth. The child should be incorporated into the interaction. The clinician should be focused when addressing an acute problem and redirect as needed. Following information gathering through shared dialogue, the clinician should counsel and close the visit. One approach is an open to closed “cone” interaction with the gradual narrowing of focus from an initial nondirective approach to a more direct exploration of a specific hypothesis. Other techniques include: 1. Open-ended questions: allowing patients to describe their symptoms using their own vocabulary and personal experiences 2. Facilitation: comments or interviewer behaviors that encourage the patient to continue talking along the same lines (e.g., nodding without interrupting) 3. Summarization: providing an explicit verbal summary of the information gathered so far, which allows the patient to confirm that the physician has understood what has been said, and acts as an opening to further explain the problems and thoughts 4. Surveying problems: briefly scan the full range of a patient’s problems, such as by asking, “What else would you like to share?” (Cole & Bird, 2014)

Meeting and Greeting The first few moments of the interview can set the stage for success or failure. Davies-House and colleagues (2017) investigated how patients want to be greeted by clinicians on a first encounter in the clinical setting. They found that patients preferred to be greeted informally by their first name and didn’t mind how the clinician introduced themselves or preferred them to use their first name also. Patients showed a preference to shake hands with their clinician, particularly in older generational cohorts. Most patients believed that it was helpful to know the specific role of the clinician, whether a student, resident, fellow, or attending, and to be provided an explanation of what that meant (Davies-House, Ball, & Balmer, 2017).

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Many settings have emphasized the importance of making these distinctions by having name badges or color-coded uniforms that clearly identify roles. At the same time, it may be preferable to ask the child and the caregiver how they would like to be addressed and to note and be respectful of their requests. Expanding on the earlier research, Studer (2003) developed the AIDET mnemonic as a template for improving communication with patients, which has been linked to patient satisfaction. AIDET is widely used in health care settings and enhances clinician and patient satisfaction. The AIDET model provides a framework for initiating every patient interaction. The components are: Acknowledge: Address each person in the room. Introduce: Introduce yourself, your role, your specialty, your training. Duration: Set expectations for the length of the visit. Explanation: Describe what will happen during the visit Thank You: Show appreciation for the family’s trust.

Agenda Setting There is often a struggle to be certain that all the family’s concerns are heard while effectively managing time. The use of collaborative upfront agenda setting has been shown to identify more concerns early in the visit and result in fewer concerns being raised late in the visit, with no significant difference in visit length. (Brock, Mauksch, Witteborn, Hummel, Nagasawa, and Robins, 2011) found no difference in total concerns addressed, patient or provider satisfaction, or patient trust and functional status when setting a clear agenda at the outset of the visit. Eliciting additional concerns following identification of the chief complaint by asking, “What else is important for us to address today?” can eliminate surprise concerns at the end of the visit and provide an opportunity for the clinician and the family to establish priorities for the visit. Previous studies have shown that due to feelings of time constraints, the clinician often interrupts the patient during an opening statement. Beckman and Frankel (1984) found that patients were only permitted to complete their opening statement 23% of the time, with the average interruption occurring after just 18 seconds, and that only 2% of those opening statements were subsequently completed. If patients were permitted to complete their opening statements, they only took 2.5 minutes (Beckman & Frankel, 1984). Clinicians should avoid interruption, thus facilitating information gathering and improving satisfaction. Shah and Ribaudo (2018) identified the SHARE concept as useful when preparing and conducting an interview. Within this framework, components of visits and overall care should strive to be continuous, comprehensive, family centered, coordinated, compassionate, and culturally effective. The SHARE framework identifies the following guidelines: S: Set the tone by creating a safe holding environment, which provides support to the parent and child and begins to build the therapeutic alliance.

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H: Hear parent concerns about health, development, and behavior and how they affect overall family functioning. This may require the use of guided questions. A: Address specific risk factors and Allow the parent to reflect on how cultural traditions contribute to their expectations of child behavior, health, and development. R: Reflect with parents on their experience of the child and Reframe in terms of the child’s developmental level. Revisit therapeutic goals identified. E: Empower the parent and child by formulating an action plan to address concerns and goals identified during the visit.

Potential Challenges for Consideration When working with families, many obstacles can impede the clinician’s ability to gather information. There may be language barriers that affect interaction. It is estimated that 25 million Americans speak English “less than very well” and that more than 60 million speak a language other than English at home. Title VI of the Civil Rights Act mandates the use of interpreter services be provided for patients with limited proficiency, and is superior to relying on unstrained staff, family, or friends. Clinicians should remember to address child and family members directly with warmth, using short statements, and allowing for sentence-by-sentence interpretation (Juckett & Unger, 2014). Social determinants of health have become an increasingly relevant consideration in health care. More than 40% of patients reported that their doctor was unaware of their struggles (Andermann, 2016). Asking about these concerns in a sensitive and culturally appropriate way becomes essential. Behfourez, Drain, and Rhatigan (2014) encouraged

clinicians to rethink the social history to include the assessment of broader social factors (Table 77.1). Access to care for individuals with developmental disabilities is a common concern. Telehealth offers a method to improve access to care by making specialty provider care available in rural, remote, and medically underserved communities (Hooshmand & Foronda, 2018). During the COVID-19 pandemic, it became an almost essential way to provide health care as shelter-in-place mandates quickly spread across the United States. Telehealth has allowed providers to improve access to services that were previously geographically challenging. Underserved and rural areas often benefit from the ability to use telehealth services. In rural areas knowledge and resources regarding ASD is very limited. Telehealth can assist with education of rural community providers, early intervention specialists, education specialists, and families (Goldstein, Klaiman, & Williams, 2017). The use of telehealth may expedite the ability to receive a diagnosis and thus implement early intervention services (Alfuraydan et al., 2020). A study regarding telemedicine for care of children and adolescents with developmental disabilities found three different factors that parents reported making telemedicine an attractive alternative. These included requiring a travel time of 1 hour for subspeciality care, parent missing work to travel to appointment, and reliance on emergency departments for care or regulation of child’s medication (Langkamp, McManus, & Blakemore, 2015). There have been concerns regarding outcomes and patient satisfaction with telehealth services. Several studies have looked at outcomes and satisfaction levels of telehealth for children with developmental disabilities. Overall,

TABLE 77.1  Social Considerations in the Developmental-Behavioral Pediatric Interview Social Factor

Screening Strategy

Reference

Health literacy

The Newest Vital Sign

Weiss et al., 2005

Poverty

Do you have difficulty making ends meet at the end of the month?

American Academy of Pediatrics, 2016

Food insecurity

Within the past 12 mo, we worried whether our food would run out before we got money to buy more. Within the past 12 mo, the food we bought just didn’t last and we didn’t have the money to get more.

Brcic, Eberdt, & Kaczorowski, 2011

Adverse childhood experiences

What bad, sad, or scary things may have happened to you and your family?

Duby, 2018

Impact of racism

Assess for bullying and/or cyberbullying on the basis of race. Assess neighborhood safety, poverty, housing inequity, and academic access. Assess patients who report experiencing racism for mental health conditions, including signs of posttraumatic stress, anxiety, grief, and depressive symptoms, using validated screening tools and a trauma-informed approach to make referrals to mental health services as needed.

Trent et al., 2019

CHAPTER 77  The Interview in Developmental-Behavioral Pediatrics

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BOX 77.1  Tips for a Successful Virtual

BOX 77.2  Tips for Successful Virtual

Visit—Preparing for Visit

Visit—During the Visit

1. Ensure the background being used and clinician’s personal appearance are professional. 2. Avoid wearing patterns or stripes as this can be visually confusing to the patient. 3. Natural light sources are often ideal. 4. It is important to have a backup form of communication should there be a technology failure prior to or during the visit. 5. Consider hosting the visit while standing. This can improve the dynamics of the visit and tone of voice. 6. Look in the camera instead of the screen to improve eye contact. 7. Have the patient and family complete screening tools prior to the visit through the patient portal. 8. Train staff to help families connect to the platform if they are having difficulty.

1. Introduce yourself and credentials. Consent procedure should be reviewed discussing risks and benefits of telehealth services. The patient should then verify name and location (important for state licensing and to provide emergency aid if needed during the appointment). 2. Discuss the plan if the service platform is disconnected during the visit. Ask the patient to interrupt you if the patient experiences any technology issues. 3. Setting an agenda can help the patient to know what to expect from the visit, especially if the patient has not used telehealth services in the past. 4. Telehealth visits allow children to be watched in their normal environment. Parents can be coached through interactions by wearing earbuds. 5. During the interaction it can be helpful to be more deliberate and overt in nonverbal responses. It can also be helpful to ask more questions to clarify the meaning attached to facial expressions and/or body language. 6. At the end of the appointment, ask about how the visit could be improved. Set a date and time for the next appointment. 7. If the family does not have the resources needed to conduct a telehealth visit, consider options that might offer bandwidth needed for such services such as schools or libraries.

Adapted from AimsCenter. (2020). Telehealth tips for behavioral health. University of Washington. aims.uw.edu/sites/default/files/ Telehealth%20Tips%20for%20BH%20Providers_040220%20Final. pdf; Korioth, T. (2021). Pediatric mental health experts share tips to make the most of telehealth visits. American Academy of Pediatrics News. https://www.aappublications.org/news/2021/01/15/officehourstelehealth011521

consultations were found to be as effective as in-person visits with high levels of parent satisfaction. One study described children with severe anxiety and autism being more engaged during telepsychiatry visits than during traditional in-person visits (Langkamp et al., 2015). Tips for a successful virtual visit are provided in Boxes 77.1 and 77.2.

Building an Alliance With Children VIGNETTE CONTINUES With Jackson and his family, the clinician set up a small table and chairs and a few developmentally appropriate toys. The clinician reflects on the pressure that the parents feel and sets the tone to begin the alliance with, “That must be uncomfortable for you when you have fewer concerns.” The clinician then begins to explore with them the developmental milestones and how Jackson interacts with others by using open-ended questions such as “How does Jackson let you know what he needs?” “What does he like to do at home?” and “How does he interact when other children are with him?” Observing repetitive hand flapping, the clinician asks, “Do you see this at home?” or “What do you think he might be trying to tell us with that behavior?”

As clinicians working with children, we must recognize the unique opportunity to build an alliance not only with parents but also with the child. We must recognize developmental aspects as this evolves. In infancy, babies are making sense of their sensory worlds and establishing basic trust in their environment. As caregivers, we should approach our youngest with warmth and soft

Adapted from AimsCenter. (2020). Telehealth tips for behavioral health. University of Washington. aims.uw.edu/sites/default/files/ Telehealth%20Tips%20for%20BH%20Providers_040220%20Final. pdf; Korioth, T. (2021). Pediatric mental health experts share tips to make the most of telehealth visits. American Academy of Pediatrics News. https://www.aappublications.org/news/2021/01/15/officehourstelehealth011521

(Cowan, Johnson and Close, 2020)

tone, using gentleness in our voice and touch. This approach can support the development of trust for both the child and parents, and even at the youngest ages we should always narrate what we plan to do with the child. As children develop, toddlers strive for a sense of autonomy, but they also experience basic stranger anxiety and separation issues. To build our alliance we can guide rapport building by allowing some sense of choice and control for little ones and allow some active exploration in the environment. Preschool thought may be characterized by magical thinking and self-focused (egocentric) thought. Children may perceive illness or standard clinical care negatively, perhaps as a punishment for being bad. Clinicians should engage the child and assess for this type of thinking, while reassuring the child that it is not the child’s fault. With school age comes advancing verbal and cognitive skills. Children start to be more logical and organized in their thinking. Clinicians should build rapport by asking about interests, friends, and school, and should begin to directly ask about their feelings. As teens, our youth are developing critical behaviors that will carry through their lifetime and are beginning to gain more autonomy from parents. Clinicians should begin to allow time with the parent and with the child separately, and begin to address confidentiality and its limits. Teens can be included in the determination of mutually agreed upon goals for care (Shah & Ribaudo, 2018). Similar tools for

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BOX 77.3  Developmental Considerations for Child Interviews Age

Developmental Stage

Tips

0–3

Symbiotic, separation

Model calm communication for parents of infants Individuation begins to occur; allow closeness with parent Avoid direct, prolonged eye contact Approach the child gently, gradually Use play to capture child’s attention Prepare the child for physical contact

3–6

Preschool, age of initiative

Use simple language Encourage child to ask questions Engage child with explanations Some time alone may facilitate relationship

6–12

School age, age of industry

Improved cognitive skills Children like to talk about family, interests Explanation of plans becomes important Spend time alone with child to determine any further concerns

13+

Adolescence, age of identity

Interview adolescent separated from parent to respect growing independence Elicit and address adolescent concerns Emphasize and clarify confidentiality issues Do not pressure the adolescent to talk Address difficult topics (drugs, sex, mental health) in a nonjudgmental manner Always be truthful Acknowledge that the adolescent is responsible for personal health care

Based on From Lui, Y.H and Stein, M.T. (2005). Talking with Children. In Parker, S, and Zuckerman, B. Developmental and behavioral pediatrics: a handbook for primary care. Philadelphia: Lippincott Williams and Wilkins.

the interview, as mentioned earlier, should be considered as we interview children. Use of open-ended questions, pauses, empathy, reflection, and active listening should be used within the context of cultural sensitivity. Consideration should be provided for the child’s developmental stage, with guidance and tips listed in Box 77.3.

FAMILY HISTORY The family history has long been recognized as an opportunity to identify potential genetic risk factors and to assess the potential for family stressors to impact children’s development and behavior. Zuckerman  and Wong (2019) have suggested that the family history is also an opportunity to disrupt transmission of behavioral health problems. They argue that a family history of at least three generations will assist the clinician in identifying underlying parental concerns and anxiety for themselves and their children. The history should specifically include depression, alcoholism, drug dependency, posttraumatic stress disorder, anxiety, and suicide. Potential follow-up questions for consideration include: • Because this problem runs in families, do the parents or their siblings have any similar problems? If yes, are they being treated, or do they need support to obtain treatment? If no, are they worried that they may develop some of these problems? • Do the parents perceive that their own childhood experiences due to the behavioral health problems of their parents currently affect their parenting? Are they, for example, overprotective, overly strict, not emotionally connected,

or easily angered? Asking parents such questions provides them with a chance to reflect on the linkage of past and present behaviors. • Are parents concerned that their children might develop similar or related behavioral health problems, if not imminently, then perhaps in adolescence? • An extend family history offers a window of opportunity to help parents perceive their children’s experience with empathy, recognizing the similarities between their own childhood experiences and their children’s. This perspective may also help parents to perceive and reflect on the need, with or without help, to make changes in their parenting to break the chain of intergenerational transmission.” (Zuckerman & Wong, 2019)

DISCUSSING DIAGNOSIS AND TREATMENT After a thorough interview is augmented by the physical examination and developmental-behavioral assessments, a differential diagnosis and treatment plan will be developed. With what has been learned from the clinician’s assessment of the family’s health literacy, the biologic, genetic, social, and environmental factors that contribute to an accurate understanding of the child’s presenting problem should be explained in terms that are easily understood by both parent and child if developmentally appropriate. Often it will be helpful to ask the family for their opinion of what the problem is. The family is often correct, and if so the disposition becomes easier since the clinician can agree with the family’s assessment.

CHAPTER 77  The Interview in Developmental-Behavioral Pediatrics

VIGNETTE CONTINUES As in Jackson’s case, the family may feel that there is not a problem, that he is just like his father, and that he will be fine if we wait a little longer. This is clearly not fully accurate, in that Jackson exhibits many signs of ASD. It will be important to highlight specific examples of the signs of ASD that were shared in the history and observed during the visit, and again to revisit the fact that these behaviors have been seen at home as well as in the clinical setting. Reviewing the diagnostic criteria in detail may be necessary. Sharing videos of children with similar concerns might be helpful. Offering to arrange a second opinion may be indicated. It will also be beneficial to emphasize the value of early intervention for all developmental concerns, including if he is simply a “late bloomer” like his father. Providing resources on ASD for the family to review and offering to track Jackson’s developmental progress with the family may be the best approach. Time and repeated observations can help the family recognize and accept the signs that are supportive of the diagnosis.

The use of Teach Back can be a valuable tool to ensure that the family has understood the diagnosis and next steps (Agency for Healthcare Research and Quality, n.d.). The clinician should start with the most important message. For example: Jackson fits the picture of a child with ASD. Then, using plain language, offer two to four key points to support the diagnosis: You have shared with me that Jackson is not talking like other children his age and that he doesn’t seem to try to communicate by pointing. He doesn’t respond to his name or look you in the eye. He lines up his cars and gets upset if you move them. Rephrase the message until there is clear understanding: Just to be safe, I want to make sure we are on the same page. Can you tell me the signs that I mentioned that make me concerned about autism? Or: I want to make sure that I explained things clearly. Can you explain to me why I am worried about Jackson having autism? Always be well prepared for this conversation. Be sure to have all available test results on hand and plan to discuss them in plain language. This should include: 1. Providing a rationale for diagnosis 2. Sharing the possibilities in differential diagnosis and rationale for the conclusion based on history, observations, and test results 3. Discussing co-occurring symptoms and conditions 4. Providing a realistic prognosis 5. Offering recommendations for further evaluation 6. Reviewing intervention options: medical, developmental, rehabilitative, educational, behavioral, recreational, integrative, complementary and alternative, safety 7. Emphasizing the ongoing importance of the primary care medical home

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8. Providing resources on diagnosis, treatment, family-tofamily support, peer-to-peer support, and sibling support 9. Social prescribing, such as connecting patients with various support resources within and beyond the health system, such as food banks, local women’s groups, housing advocacy organizations or employment agencies (Andermann, 2016) It is important to consider that some families may feel ambivalent or upset to receive a diagnosis. Some families may challenge or even argue the diagnosis with the provider. Motivational interviewing can be a very helpful technique to use in these situations (Desai, 2019). The use of open-ended questions and responding with reflective listening is important. It will help the clinician to be assured they have heard and understood the family’s and patient’s concerns accurately. It also helps the family to know the clinician is listening and hearing their concerns. Expressing empathy is important as well. It again assures the family that the clinician understands and appreciates what they are thinking and feeling. It can also assure the family that this is a collaboration. Although it will not change the diagnosis, one can assure that the family is understood and working toward a goal with the clinician. If the family has concerns regarding the diagnosis, it can be helpful to develop discrepancy between the concerns and some symptoms that have been reported. It can be helpful to ask the family open-ended questions about symptoms they are concerned about and review other possible diagnoses. This will help to build discrepancy between other diagnoses and the child’s symptoms. If the family continues to exhibit ambivalence with the diagnosis, it can be helpful to roll with resistance at this time. Invite new perspectives and give the family resources on how to find more information. Resistance is often a signal to respond differently. The clinician is there to be collaborative as much as the family chooses (Miller & Rollnick, 2002).

VIGNETTE CONTINUES With Jackson and his family, it may be helpful to reflect back to the family their concerns. The clinician could say, “I understand there is a family history of speech delay. I also recognize that the behaviors I’ve observed during the appointment are different than behaviors noted at home.” By exhibiting reflective listening at this stage, the family will know their apprehension regarding the observations are understood. It can also be helpful to gain their understanding surrounding symptoms of ASD. The family may have an inaccurate understanding of symptoms causing them to be resistant to acknowledging the validity of the diagnosis. Also, it will be important to understand what having a child with ASD would mean to them. The clinician could say, “Do you know someone with ASD? What symptoms does this person exhibit?” The family may be resistant to the diagnosis because of what they feel this may represent for their own or their child’s future. If the family still appears resistant it can be helpful to discuss symptoms they agree are present, such as the speech delay in Jackson’s history. They may be willing to initiate speech therapy as a starting point. Families may need time to process the appointment. By using motivational interviewing, it can facilitate engagement while allowing time and space to process the diagnosis.

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Shared Decision Making When considering a plan for intervention, it is important to integrate the concepts of shared decision making into the process. Key features of shared decision making include the following: 1. At least tw parties are involved. 2. Information is exchanged in both directions. 3. All parties are aware of treatment options and what they are. 4. All bring their knowledge and value-related priorities equally into the decision-making process. Shared decision making is an interactive process in which patients (families and children, especially more cognitively able children) and physicians (and other involved professionals) simultaneously participate in all phases of the decisionmaking process and together arrive at a treatment plan to be implemented. Offering children information that is appropriate for their developmental age can help their understanding of their condition and treatments, reduce fear, and enhance self-confidence. Together, the clinician and family can consider choices, options, and ultimately decisions (Adams, Levy, & Council on Children With Disabilities, 2017).

Recognizing the Emotional Needs of the Family Many families with a child with a developmental disability will grieve the loss of their ideal child. For parents with children with developmental disabilities, the gap between the idealized and actual child is generally larger, so the mourning process is more profound. Parents need an opportunity to tell their stories, to have their feelings validated, and to be offered support and community. Discussions about diagnosis and prognosis should be grounded in a hopeful, but realistic view of the future. Parents will often request input on the long-term vision for their child. It is essential to frame that discussion around realistic expectations while emphasizing the child and family’s strengths and opportunities for promoting resilience and optimal outcomes. Parents may require support in letting go of what they cannot control while also being provided information on what they can do to help their child (Kennedy, 2015). It is also important to validate the stress patients and families may be feeling. Begin conversations about emotional health and resilience early, at the time of diagnosis, and address it at most visits. Recognize that parents may have trouble acknowledging their feelings and underreport the extent of their distress. Highlight the importance of self-care for parents (Pickles et al., 2020). One simple trigger question said with true meaning that can be helpful to open the door for discussion is, “How are you doing?”

MANAGING THE CHALLENGING INTERVIEW Despite our best efforts to provide optimal care in a collaborative, supportive framework, inevitably some interactions will be challenging for clinicians to navigate. As providers, recognizing the physical or emotional responses triggered in ourselves by challenging patients/families or encounters may allow the provider to effectively partner with instead of confront the patient or family (Lorenzetti, Jacques, Donovan, Cottrell, & Buck, 2013). Challenges can arise on either side of the therapeutic alliance. Common clinician factors may include negative bias

toward specific health conditions, poor communication skills, and situational stressors. Implicit and explicit personally mediated racism is a factor that can affect health care delivery and general health outcomes, and as noted, clinicians need to be aware and examine these biases (Trent et al., 2019). Patient factors may include mental health concerns, multiple and poorly described symptoms, nonadherence to medical assistance, or self-destructive behaviors (Bruener & Moreno, 2011; Lorenzetti et al., 2013). Situational facts include time pressures during visits, patient-staff conflicts, and complex social issues. Recognizing barriers is an important first step in improving health education (Dreger & Tremback, 2002). The clinician should monitor these factors during the difficult encounter and identify contributing factors. As in all encounters, we should be mindful to use empathic listening and a nonjudgmental caring attitude, but we should also evaluate for underlying patient-state factors that may be influencing the interaction. The clinician should help to identify these factors, discuss these openly, and use patient-centered communication to return to and reach a mutually agreed upon plan. Korsch (2011) has illustrated several factors that may contribute to the difficult encounter. First, when the clinicianpatient relationship may suffer from a mismatch, the clinician should evaluate the communication style. Parents may be overanxious or talk excessively, at which time the clinician can reassure and redirect, providing added structure and boundaries to the session. The clinician should address the problem, utilize and expand the support system, and give it time. For some patients, the clinician may need to schedule more frequent and focused visits, set appropriate boundaries for each visit, and agree on achievable goals (Lorenzetti et al., 2013). Additionally, Lorenzetti et al. (2013) advised use of a CALMER approach to the difficult encounter by striving to be the catalyst for change, altering thoughts to change feelings, listening and then making a diagnosis, making an agreement, educating, and following up to reach out and discuss feelings. These more involved visits may be challenging during a busy workday, so clinicians must self-monitor their own frustrations and fatigue and engage in self-care. Strategies to help clinicians identify personal factors that may contribute to a difficult encounter include self-reflection, recognizing biases, and discussions with an experienced colleague or seeking self-support (Lorenzetti et al., 2013).

VIGNETTE CONTINUES Jackson’s parents do not share the concerns of the clinician or his grandparents. Ideally, the clinician should allow for more time with the family or have them return within a week or two to revisit the discussion and provide support. Using empathic listening and a caring attitude, we can illustrate again why we are concerned, and together develop a mutually agreed upon plan for monitoring and intervention. “I understand that you have fewer concerns, but I have heard very few words used during my observations, and Jackson seems content to play alone. We can monitor his development closely, but it would be worthwhile to pursue early intervention programs to allow for specific guidance in facilitating his development and allowing him to interact more consistently with peers. What are your thoughts on that?”

CHAPTER 77  The Interview in Developmental-Behavioral Pediatrics

CONCLUSION The interview is the basis for understanding the biologic, genetic, social, and environmental factors that influence development and behavior. A well-organized interview sets the stage for a successful therapeutic alliance, which will lead to better clinician, patient, and family satisfaction, improved adherence, and long-term outcomes. The experienced clinician will demonstrate warmth and empathy from the moment of meeting and greeting to the shared decision-making process that will lead to agreement on diagnosis and a treatment plan. Motivational interviewing techniques can foster trust, gauge readiness for change, and guide the decision-making process. It is vital that clinician’s embrace the use of telehealth technology to enhance access and improve efficiency.

REFERENCES Adams, R. C., Levy, S. E., & Council on Children With Disabilities, (2017). Shared decision-making and children with disabilities: Pathways to consensus. Pediatrics, 139(6), e20170956. Agency for Healthcare Research and Quality. (n.d.). Teach back quick guide. https://www.ahrq.gov/patientsafety/reports/ engage/interventions/teachback.html AimsCenter. (2020). Telehealth tips for behavioral health. University of Washington. aims.uw.edu/sites/default/files/Telehealth%20 Tips%20for%20BH%20Providers_040220%20Final.pdf Alfuraydan, M., Croxall, J., Hurt, L., Kerr, M., Brophy, S. (2020). Use of telehealth for facilitating the diagnostic assessment of autism spectrum disorder (ASD): A scoping review. Plos One, 1–16. American Academy of Pediatrics Committee on Early Childhood, & Adoption and Dependent Care. (2011). The pediatrician’s role in family support and family support programs. Pediatrics, 128(6), 1680–1684. American Academy of Pediatrics Council on Community Pediatrics. (2016). Poverty and child health. Pediatrics, 137(4), e20160339. https://doi.org/10.1542/peds.2016-0339. Andermann, A. (2016). Taking action on the social determinants of health in clinical practice: A framework for health professionals for the CLEAR Collaboration. CMAJ Podcasts. https://soundcloud. com/cmajpodcasts/160177-rev. Beckman, H. B., & Frankel, R. M. (1984). The effect of physician behavior on the collection of data. Annals of Internal Medicine, 101(5), 692–696. Behfourez, H. L., Drain, P. K., & Rhatigan, J. J. (2014). Rethinking the social history. New England Journal of Medicine, 371(14), 1277–1279. Brcic, V., Eberdt, C., & Kaczorowski, J. (2011). Development of a tool to identify poverty in a family practice setting: A pilot study. International Journal of Family Medicine, 812. https://doi. org/10.1155/2011/812182. Brock, D. M., Mauksch, L. B., Witteborn, S., Hummel, J., Nagasawa, P., & Robins, L. S. (2011). Effectiveness of intensive physician training in upfront agenda setting. Journal of General Internal Medicine, 26(11), 1317–1323. Bruener, C. C., & Moreno, A. A. (2011). Approaches to the difficult patient/parent encounter. Pediatrics, 127(1), 163–169. Cole, S. A., & Bird, J. (2014). The medical interview: The three-function approach (3rd ed.). Saunders Elsevier.

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Cowan, A., Johnson R., Close H. (2020) Telepsychiatry in Psychotherapy Practice. Innov ations in Clinical Neuroscience, 17(4–6), 23–26. Davies-House, A., Ball, N., & Balmer, C. (2017). Meeting and greeting in the clinical setting—are we doing what patients want? British Dental Journal, 222(6), 457–461. Desai, N. (2019). The role of motivational interviewing in children and adolescents in pediatric care. Pediatric Annals, 48(9), e376–e379. Dreger, V., & Tremback, T. (2002). Optimize patient health by treating literacy and language barriers. AORN Journal, 75(2), 280–285, 287, 289–293; quiz 297–300, 303–304. Duby, J. C. (2018). Social and emotional development. In R. G. Voigt, M. M. Macias, S. M. Myers, & C. D. Tapia (Eds.), Developmental and behavioral pediatrics (2nd ed., pp. 223–250). American Academy of Pediatrics. Goldstein, F. P., Klaiman, C., & Williams, S. (2017). Bridging care gaps: Using tele-health to provide care for people with autism spectrum disorder. International Journal of Developmental Disabilities, 63(4), 190–194. Hooshmand, M., & Foronda, C. (2018). Comparison of telemedicine to traditional face-to-face for children with special needs: A quasiexperimental study. Telemedicine and e-Health, 24(6), 433–441. Juckett, G., & Unger, K. (2014). Appropriate use of medical interpreters. American Family Physician, 90(7), 476–480. Kennedy, D. (2015). Grieving the loss of the ideal child. MindSpark. https://mindsparklearning.com/grieving-the-loss-of-the-idealchild/. Korioth, T. (2021). Pediatric mental health experts share tips to make the most of telehealth visits. American Academy of Pediatrics News. https://www.aappublications.org/news/2021/01/15/officehours telehealth011521. Korsch, B. (2011). Talking to families. In M. Augustyn, B. Zuckerman, & E. B. Caronna (Eds.), The Zuckerman handbook of developmental behavioral pediatrics in primary care (3rd ed., pp. 3–6). Lippincott Williams and Wilkins. Langkamp, D. L., McManus, M. D., & Blakemore, S. D. (2015). Telemedicine for children with developmental disabilities: A more effective clinical process than office-based care. Telemedicine and E-Health, 21(2), 110–114. Levetown, M. (2008). Communication with children and families: From everyday interactions to skill in conveying distressing information. Pediatrics, 121(5), 1441–1460. Lorenzetti, R. C., Jacques, C. H. M., Donovan, C., Cottrell, C., & Buck, J. (2013). Managing difficult encounters: Understanding physician, patient and situational factors. American Family Physician, 87(6), 419–425. Liu, Y. H., & Stein, M. T. (2019). Talking with children. In M. Augustyn & B. Zuckerman (Eds.), Parker handbook of developmental and behavioral pediatrics for primary care (4th ed.). Wolters Kluwer. Miller, W. R., & Rollnick, S. (2002). Motivational interviewing (2nd ed.). Gilford Press. Pickles, D. M., Lihn, S. L., Boat, T. F., & Lannon, C. (2020). A roadmap to emotional health for children and families with chronic pediatric conditions. Pediatrics, 145(2), e20191324. Shah, P. E., & Ribaudo, J. (2018). Interviewing and counseling children and families. In R. G. Voight, M. M. Macias, S. M. Myers, & C. D. Tapia (Eds.), Developmental and behavioral pediatrics (2nd ed., pp. 61–77). American Academy of Pediatrics.

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Studer, Q. (2003). Hardwiring excellence (pp. 285–292). Fire Starter Publishing. Trent, M., Dooley, D. G., & Dougé, J. (2019). Section on Adolescent Health, Council on Community Pediatrics, Committee on Adolescence Pediatrics. The impact of racism on child and adolescent health. Pediatrics, 144(2), e20191765. Weiss, B. D., Mays, M. Z., Martz, W., Castro, K. M., DeWalt, D. A., Pignone, M. P., . . . Hale, F. A. (2005). Quick assessment of literacy in primary care: The newest vital sign. Annals of Family Medicine, 3(6), 514–522.

Wender, E. H. (2009). Interviewing: A critical skill. In W. B. Carey, A. C. Crocker, W. L. Coleman, E. R. Elias, & H. M. Feldman (Eds.), Developmental-behavioral pediatrics (4th ed., pp. 747–756). Saunders Elsevier. Zuckerman, B., & Wong, S. L. (2019). Family history: An opportunity to disrupt transmission of behavioral health problems. Pediatrics, 143(6), e20183383.

78 The Physical Exam: Laying on of Hands…or Not Jamie T. Rabot, Randall Phelps, and Heidi M. Feldman

For additional material related to the content of this chapter, please see Chapters 76 and 84.

VIGNETTE History: Dylan is a 12-year-old boy with previous diagnoses of attention-deficit/hyperactivity disorder and oppositional-defiant disorder. Multiple medications have been prescribed, with negligible benefits. His mother requests diagnostic reassessment. As you enter, Dylan and his mother are sitting on opposite sides of the room. Dylan responds to your greeting with an angry glare. He answers your introductory questions with only a glower. His mother answers for him. She rapidly enumerates his many challenging behaviors. She awkwardly draws a blank when you ask her to list some strengths. After the history, you ask her to go to the waiting room so you can complete a physical examination. Physical examination: Alone with Dylan, you struggle to make progress with your usual opening questions. So, you explain that you are going to do a physical examination. You start by first asking to see Dylan’s hands. He reluctantly complies, extending his hands. You ask Dylan to squeeze your fingers. Dylan relishes squeezing your fingers a little too hard. You laugh, complimenting his strength, and playfully ask him to stop before he breaks your fingers. You proceed to test strength of his upper extremities. Dylan’s expression softens and you reintroduce ice-breaker questions, working toward questions about home life. Dylan soon discloses key details about his mother’s excessive drinking and fits of rage.

Developmental-behavioral diagnosis is primarily based on history. Clinicians in developmental-behavioral medicine, such as psychiatrists and psychologists, may dispense with the physical examination. Certainly, developmental-behavioral diagnoses may often be made on basis of information gleaned from combination of interview, direct observations, questionnaires, and psychological testing. Nevertheless, physical examination serves as a valuable component of the diagnostic workup for three reasons. First, the exam may reveal subtle or previously missed findings that provide the explanation for a developmental disorder. Second, the physical examination offers the clinician an opportunity to model for caregivers approaches that promote calmness and cooperation. Third, the exam offers an opportunity to create

an emotional connection with a child. Particularly if the clinician has obtained a long history in which the child was only rarely involved, the physical examination allows the clinician to link back with the child, using a combination of physical and nonphysical means. In the chapter-opening vignette, the exam helped Dylan to relax and thus allowed him to reveal his true feelings. The response of the child to kind and supportive interactions in such cases provides a wealth of information, often as relevant to diagnosis as the physical findings. When done skillfully, the physical exam contributes to the positive relationship among clinicians, parents, and children.

CONDUCTING THE PHYSICAL EXAMINATION The setting of the physical exam can enhance its utility. The physical examination is often best done after the history, when the information collected during the interview can guide the examination. Moreover, especially if the clinician makes efforts to engage the child in the discussion, the shy or fearful child may have had an adequate chance to warm up or relax. To establish a positive relationship, the physical exam should begin with conversation with the child. Simple questions, such as the child’s favorite foods or the name of the family’s pet, serve to demonstrate the supportive nature of the interaction. Repositioning of seating may be helpful to demarcate this actual physical exam from the conversational part of the assessment. Whenever possible, the examiner should be comfortably seated at eye level with the child. The examination should proceed in a systematic and calm manner, allowing the examiner to introduce each part of the examination and to provide reassurance when necessary. In examining preschoolers, school-age children, and adolescents, we advocate starting with a request to see the patient’s hands. The advantage of starting with the hands is that the maneuver is relatively unintimidating. For shy or fearful children, we remain relatively distal, moving closer only as their behavior suggests they are ready. After the children place their hands in ours, we may ask a question about a bracelet, or a scrape, or other distinctive features of the hands. This moment provides an opportunity to assess social and communication skills. We proceed to test upper extremity tone and strength, joint range of motion, dexterity, rapid alternating movements, and right-left discrimination. These tasks are 785

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almost invariably amusing to preschoolers and school-age children and yet are not as arousing as gross motor testing. If the child is uncooperative or highly impulsive, we try various maneuvers to encourage cooperation or organization. For example, we provide physical limits so the child cannot grab at tools, or we offer social rewards in the form of praise for cooperation. We often find that the child is typically visibly relaxed after this portion of the exam. With a cooperative school-age child we go from evaluation of the upper extremities to a variety of maneuvers to informally assess neurologic soft signs, working memory, short-term memory, verbal abilities, organizational skills, and spontaneous recall from categories (Holden, Tarnowski, & Prinz, 1983; Stinnett, Oehler-Stinnett, Fuqua, & Palmer, 2002). We recognize that neurologic soft signs are not pathognomic of disorders. We also recognize that behavior in the office may not be representative of functional abilities in the world. However, these maneuvers allow us to sample behaviors and to observe how the child handles a set of challenges. In fact, these procedures often demonstrate the very symptoms that brought the child to the evaluation—which we can check with the parent(s)—thereby demonstrating to parents that we understand their concerns. For example, we ask the child to demonstrate right-left discrimination on body parts, progressing from single body parts (“Show me your left hand”), to crossed commands (“Put your right hand on your left ear”), to right-left on others (“Show me my left hand”) and crossed commands (“Shake my right hand with your right hand”). Some children can perform accurately at first but then impulsively begin to anticipate the command before it is given. Other children cannot remember the crossed commands. We also ask children to do a digit span forward, expecting that they will be able to recall about two less than their age to a maximum of six to seven. We follow this task with digit span backwards, expecting them to do two less than they did on digit span forward. Some children with apparently good attention are unable to remember more than a couple of digits. Some children with a good forward digit span cannot perform the reverse span, suggestive of problems of working memory and executive function (Stinnett et al., 2002). It is also informative to see how the parents relate to their child during these maneuvers. Some parents reprimand when the child becomes impulsive; others giggle when the child makes a mistake. With the patient still seated, we proceed with the standard pediatric physical examination, from head to toe. We conclude the examination by assessing gross motor skills, concurrent with the ability to follow a set of commands and to hold postures for long periods of time despite noises and distractions. These maneuvers again provide insight into the child’s ability to remember commands, coordinate movements, and control impulses (Stinnett et al., 2002). Throughout the examination we continue to prepare the patient for each step. We voice appreciation for cooperation and remark upon positive features or good performances. For children with behavioral problems, the physical examination allows the clinician to model effective, creative, and compassionate behavioral approaches for families. Containment by strategic positioning, engaging the child’s interests, and gentle

Fig. 78.1  Physical examination of a child with high activity level and poor attentional skills may be facilitated through physical containment by body positioning and engaging the child’s interests.

Fig. 78.2  Physical examination of a child who is fearful, worried, shy, or socially unskilled may be facilitated by maintaining distance, avoiding the child’s eye-to-eye gaze, and minimal physical contact.

but firm redirection promote participation in the child with hyperactivity and impulsivity (Fig. 78.1). Playful transitions can lure the oppositional child into participation. For example, the preschooler who refuses verbal entreaties to participate in testing and continues to loll around on the floor may respond positively to the offer to “fly in a helicopter” over to the table. Children who are shy and slow to warm up may respond to a gentle, calm approach. Children with autism and/or social anxiety may require maneuvers to be done at a distance without any physical touch (Fig. 78.2). Children who have difficulties with transitions benefit from frequent reminders of what comes next.

BEHAVIORAL OBSERVATION Informal and semistructured behavioral observations during the history and physical examination are essential to the diagnostic evaluation. We carefully observe children from the

CHAPTER 78  The Physical Exam: Laying on of Hands…or Not

moment we first see them. We typically have toys available in the examination room. How children play, their activity level, and their attention span may be interpreted, with caution, from watching them during the visit. We recognize that children may play differently in clinic than they would at home. Nevertheless, observations of unstructured play are a useful complement to parent and teacher reports. Free play offers a prime opportunity to watch for stereotypical or other repetitive movements, hyperactivity, impulsivity, oppositional behavior, and tics. We routinely ask children to draw themselves and their families during the examination. Drawings provide insights regarding family dynamics as well as visual-motor development and attention span. Asking children about their drawings is a strategy to obtain a language sample from a child who may be unwilling to engage in conversation (Dixon & Stein, 2006). Some children do not like to draw. It is informative to see how they handle frustration or stress. We pay particular attention to communication skills throughout the interview and during the physical examination because of the importance of communication in children’s lives and the underidentification of communication disorders. We consider the size and diversity of the vocabulary; the length, complexity, and grammaticality of sentences; intelligibility; and the accuracy of articulation. In addition, how children use speech and nonverbal communication to participate in conversation or regulate their own behavior is very telling. Prosody (intonation) and semantics (meaning) of speech can also be an important clue in diagnostic assessment (see Chapter 44). The evaluation of self-care skills relies heavily on parent report. However, informal observations during the physical examination add valuable information. How independent is the preschooler in initiating a request to go to the bathroom? Do they participate in cleanup after playing with toys? How do they manage dressing after the physical examination? The physical examination offers opportunities for assessing mobility. In addition to moving about through space, we assess fine motor skills in the physical examination, particularly in school-age children for whom writing and drawing are important tasks. Direct observations of parent-child interactions and clinician-child interactions contribute significantly to the assessment of social skills. Again, children may act quite differently in clinic than they do in their natural environment. Nervousness may induce unusual awkwardness or silliness. Fear may inspire compliance with requests. The clinician must acknowledge that a child’s interactions in the exam may not accurately reflect that child’s social skills with family at home or with peers. Nevertheless, observations of social interactions even in the clinic setting can be very informative. Does the child notice when the examiner enters the room? How does the child respond to a greeting? To humor? Does the child look to parents for reassurance? For comfort? Does the child initiate social interactions or seek to share success? How does the parent interact with the child?

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RELEVANT PHYSICAL FINDINGS Growth and Physical Maturity One crucial set of data that should be collected in every developmental assessment are growth measurements and indicators of physical maturity. Physical development, including height and weight, head size, and sexual development, may provide clues important to diagnosis. Head size should be measured in all patients presenting for developmental assessment, regardless of age. The thyroid should also be consistently evaluated, which includes not just palpation of the gland itself, but assessment of hair and skin texture and evaluation of the relaxation phase of the deep tendon reflexes. Table 78.1 summarizes the implications of various features of growth and maturity.

Abnormal Findings A set of major and minor malformations may allow for the diagnosis of a specific syndrome, such as Down syndrome, fragile X, fetal alcohol syndrome, or Williams syndrome. Identifying a specific syndrome in the case of children with multiple dysmorphic features has implications for the assessment of current functioning, the prognosis, and recurrence risk in the family. Children with multiple abnormal findings without a recognizable pattern may require a comprehensive genetic evaluation. Major and minor dysmorphic features may not point to a specific diagnosis but indicate possible abnormalities of brain morphogenesis, and therefore have implications for developmental evaluation and prognosis (Table 78.2) (Jones, 2006). Interpretation of any specific finding must be made carefully since many of these features occur in a small percentage of individuals with typical development. Findings on dermatologic examination may be indicative of various neurocutaneous syndromes. Other findings on the general physical examination may be pertinent to developmental assessment (Table 78.3). TABLE 78.1  Possible Diagnostic Significance of Abnormal Findings in Growth and Sexual Maturation Abnormal Findings

Possible Significance

Short stature, height > weight

Calorie deficiency

Short stature, height < weight

Endocrine etiology

Short stature, height = weight

Genetic/constitutional causes

Tall stature

Fragile X syndrome, Weaver syndrome, Sotos syndrome

Microcephaly

Abnormal brain development

Macrocephaly

Abnormal brain development, autism spectrum disorder

Enlarged fontanelle

Thyroid deficiency

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TABLE 78.2  Nonspecific Dysmorphic

Features Associated With Anomalous Brain Development Body Part

Dysmorphic Features

Pathogenesis/Possible Significance

Cranium

Microcephaly

Reduced brain growth

Asymmetry

Premature suture fusion, deforming external forces, or abnormal underlying brain growth

Absent or multiple (>2) parietal whorls

Abnormal brain development between 10 and 16 wk gestation

“Cowlick,” or anterior upsweep of scalp hair

Posterior displacement of junction of parietal and frontal hair streams, resulting from reduced frontal brain development

Short palpebral fissures

Deficient frontal brain growth

Up-slanted palpebral fissures

Relatively deficient frontal brain growth as compared with midface growth

Low set (below top of helix, below outer canthi)

Delayed morphogenesis, fetal pattern of ear position

Posterior rotation (axis tilted backward >15 degrees)

Delayed morphogenesis, fetal pattern of posterior ear rotation

High arched

Persistent lateral palatal ridges, indicative of oral hypotonia or other oralmotor dysfunction

Hair

Eyes

Ears

Mouth

TABLE 78.3  Miscellaneous Physical Exam Findings of Developmental or Behavioral Significance

Neurologic Examination The neurologic examination is a crucial component of the developmental assessment as it may provide evidence for neurologic immaturity or focal neurologic injury. A systematic assessment of the evolution of complex reflexes can indicate neurodevelopmental delay, such as is seen in global developmental delay, or neurodevelopmental deviance, such as is seen in cerebral palsy. A systematic approach, such as has been developed in the Milani-Comparetti Motor Development Screening Test, evaluates the child’s posture and tone in different positions, the development of motor skills, the evolution of primitive reflexes, and protective responses to rapid movement (Trembath, Kliewer, & Bruce, 1977). Careful examination of cranial nerve function may help in elucidating focal lesions. Examples of findings on cranial nerve examination with the corresponding significance are provided in Table 78.4 (Maria, 2005). Clues to developmental diagnoses may be provided by abnormalities of tone, strength, coordination, or deep tendon reflexes. Systematic examination of each of these features should be included in developmental assessments. Table 78.5 summarizes some key findings with their corresponding significance (Maria, 2005).

TABLE 78.4  Significance of Findings on Examination of Cranial Nerves Finding

Possible Significance

Vertical nystagmus

Brainstem dysfunction

Horizontal or rotary nystagmus

Congenital abnormality, vestibular abnormality, medication side effect

Pupil asymmetry

Intracranial mass effect, midbrain dysfunction, optic nerve abnormality, medication side effect Associated with ptosis and anhydrosis: Horner syndrome (Note: 10% of children have subtle baseline pupil asymmetry.)

Ptosis

Impaired sympathetic innervation, myasthenia gravis, cranial nerve (CN) III dysfunction

Finding

Possible Significance

Tonsillar hypertrophy

Obstructive sleep apnea

Alopecia

Trichotillomania, stereotypies involving scalp

Increased width of palpebral fissure

Upper motor neuron dysfunction, CN VII dysfunction

Ecchymoses over soft tissues

Nonaccidental trauma Self-mutilation, stereotypies

In-turning of eye or impaired abduction

CN VI dysfunction

Bitten nails, cuticles, callouses

Positive cover test

Esophoria or exophoria

Upper and lower facial weakness

CN VII dysfunction

Isolated lower facial weakness

Stroke

Characteristic scars

Self-cutting

Discoloration of dorsum of hand, posterior molar acid damage, parotid hyperplasia

Bulimia nervosa

CHAPTER 78  The Physical Exam: Laying on of Hands…or Not

TABLE 78.5  Key Findings on Neuromus-

cular Examination and Associated Diagnoses Key Findings

Possible Significance

Asymmetry of muscle tone, bulk, or range of motion

Cerebral palsy, stroke, peripheral lesion

Weakness Most sensitive: deltoids, wrist extensors, hamstrings, ankle dorsiflexors Least sensitive: handgrip, biceps, quadriceps, gastrocnemius

Neuromuscular disorders

Asymmetry of rapid alternating movements

Dyscoordination, associated with many disorders, including ADHD, ASD

Slowness of attempted rapid pincer movements or toe-tapping

Upper motor neuron dysfunction

Irregularity of attempted rapid pincer movements or toe-tapping

Cerebellar dysfunction

Abnormal finger-nose-finger testing

Tremor, dysmetria, dyscoordination

Decreased deep tendon reflexes

Muscular, peripheral nerve, acute upper motor neuron or cerebellar abnormality

Increased deep tendon reflexes, clonus

Brain or spinal cord lesion, such as cerebral palsy

ADHD, Attention-deficit/hyperactivity disorder; ASD, autism spectrum disorder.

WHEN WE ARE UNABLE TO LAY ON HANDS: TELEHEALTH The COVID-19 pandemic prompted a dramatic and abrupt increase in the use of telehealth. It is highly likely that telehealth will remain a substantial part of our ongoing practice of developmental-behavioral pediatrics. In this section we discuss how we can examine a child when we practice telehealth.

General Principles Telemedicine is the use of telecommunication technology to exchange medical information and provide clinical care to patients at a distance. Telehealth, which refers to the broader scope of remote health care services, was initially introduced in the 1960s and gained popularity in the 1990s as technological advances increased and associated costs declined (Perednia & Allen, 1995). Initially intended to improve health care delivery for patients in remote settings, telemedicine now has a wide clinical scope with the purpose of providing more convenient, safe, and cost-efficient care. The COVID-19

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pandemic catalyzed the rapid adoption of telemedicine. Widespread use was facilitated by lifting regulatory restrictions on the platform used and by insurance companies reassuring reimbursement even for new patient consultations (Hirko & Kerver, 2020).

Advantages of the Telehealth Visit Telehealth is a cost-effective strategy for increasing access to care for families, especially those who live in rural locations (Soares & Langkamp, 2012). It decreases the nonmedical costs of accessing health care and eliminates common frustrations, such as transportation expense, time in traffic, parking, and navigating a large campus. Prior to the COVID-19 pandemic, data supported a rise in patient satisfaction and a decrease in no-show and short notice cancellation with the use of telemedicine (Joshi, 2014). Advantages of telehealth that are specific for the care of children with neurodevelopmental and behavioral disorders include the ability to see children in their natural environments, including home and school. Telehealth platforms may permit coordination of interdisciplinary teams, regardless of geographic location. An initial telehealth visit can be used to gather initial data or to clarify referral questions for additional subspecialty services that may be needed.

Limitations of the Telehealth Visit The most obvious limitation in telemedicine, especially for new consultations, is the inability for the clinician to complete all parts of the examination. Thus it is crucial that the clinician determine when a virtual visit is inadequate and have systems in place to expedite an in-person examination visit. The method introduces significant challenges for families with language barriers, lack of access to technology or bandwidth, or knowledge for troubleshooting technological difficulties (Guido-Estrada, 2020). Real-time telemedicine may be difficult with children with developmental disabilities who cannot cooperate with clinicians via remote methods. Asynchronous or store-and-forward telemedicine may offer benefits for children with developmentalbehavioral problems due to more flexibility in the timing of data collection for the visit. These include avoiding the need for special equipment or staff during travel, decreasing anxiety for the child and parents, and increasing the likelihood of a successful examination (Langkamp, Mcmanus, & Blakemore, 2015).

Examination in the Telehealth Visit Like an in-person examination, the telehealth visit offers opportunities to assess a wide array of physical, developmental, and behavioral features and to see a child in interaction with family. The setting is important in telehealth, just as it is in the office.

Patient Privacy and Security Videoconferencing interactions are generally required to comply with the Health Insurance Portability and Accountability

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Fig. 78.3  Televisit. Position the camera at a level where it does not cut off the top of the clinician’s head. Allow some distance between the camera and clinician to give the impression that the clinician is looking directly at the patient and caregiver. Demonstrate components of virtual neurologic examination and establishing connection with patient virtually.

Act (HIPAA) of 1996. Just as important as HIPAA, pediatric clinicians need to comply with the Children’s Online Privacy Protection Act (COPPA, 2013), which assigns parents in control when it comes to collection of personal information from children under 13 years old. Unlike an office visit, it is important to consider the privacy of the family’s setting. Ensure that only those individuals who are involved in the visit are present. It is possible to use telehealth to have private conversations with parents while children are not in the same room. Ensure that the child is safe in the home, if the child is not present.

The Clinician’s Considerations The clinician should consider whether the remote connection facilitates interaction and encourages trust. A few tips are as follows (Fig. 78.3): Ensure that the lighting in the room is in front of the clinician, avoid bright lights behind or next to the clinician, allow distance between the camera and clinician to give the impression that the clinician is looking directly at the child and caregiver, look directly into the camera so as to appear to be directly speaking to the patient and caregiver, limit noise, and use a microphone with good sound quality (Northeast Telehealth Resource Center [NTRC], 2020). The Child and Family Considerations It is helpful to create instructions for caregivers on how to access the virtual system, including how to get started and how to navigate it. It may be helpful for a medical

TABLE 78.6  Suggested Items During Virtual Visits to Assist With Behavioral Observation and Neurologic Examination Child Age

Suggested Toys and Tools

Infant and toddler

Shiny or visually interesting toy Rattle or other noise-making toy Flashlight or other source of light Crayons and paper Soft ball

Preschool and school-age child

Crayons or pen/pencil and paper Favorite books Soft ball, size of tennis ball Cotton swab or soft tool for sensory exam Flashlight or other source of light

assistant to check the family in to make sure technology is working well (NTRC, 2020). As with in-person visits, consideration of the child’s safety while parents are providing history and during the developmental examination is paramount (Grefe, Hsieh, & Joshi, 2020). To prepare for optimal virtual observations it is helpful to request that the family have materials available at the time of the examination (Table 78.6) The physical (Box 78.1) and neurologic (Box 78.2) examinations can be accomplished via telehealth, using ingenuity and parental engagement. Fig. 78.3 demonstrates how a positive relationship can be established with a child in telehealth,

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BOX 78.1  The Virtual Physical Examination Vital signs and constitutional. Parents can measure height, weight, and head circumference. For the head circumference, ask the parent to measure the head at the largest point on the forehead and around the head just above the ear pinna, using a tape measure. If done during the visit, observe the child for any signs of distress. Make observations of the child’s behavior, as in an office visit. Skin. Request that the parent allow you to examine the entire skin surface and notate any skin lesions. Ask the caregiver to show you the child’s back. Head, eyes, ears, nose, and throat. Observe for signs of facial dysmorphisms. Ask parent to use the video from the camera on the backside of the smartphone to provide a clear view of the oropharynx. Neck. Instruct the child to look over the right shoulder and then look over the left shoulder. Ask about pain or limitation with motion.

Lungs. Ask patients to deeply inhale and exhale through an open mouth. Listen for coughing or wheezing. Observe for tachypnea and accessory muscle use as signs of impaired respiration. Heart. Ask the child/caregiver to take the pulse at the wrist. Have them count out the beats they feel. If children have an Apple Watch or similar smartphone technology, including AliveCor from Kardia.10,11, heart rates and electrocardiogram may be displayed via the monitor during the visit or uploaded prior to the visit. Abdomen. Look for protuberance and scarring. The presence of any feeding tubes (G-tube, J-tube) should be documented as well. Extremities. Assess for range of motion, signs of deformity, or local inflammation Adapted from Benziger, Z. (2021). The telehealth ten: A guide for a patient-assisted virtual physical examination. American Journal of Medicine, 134(1), 48–51.

BOX 78.2  The Virtual Neurologic Exam Mental status. Observe level of alertness, awareness, or interaction with the environment. Try to get the child’s attention. Observe the interaction with the caregivers, including games such as Peek-a-Boo. Engage in conversation with the child. Cranial nerves II, III, IV, VI: Have the caregiver gently hold the child’s head, then move a visually interesting toy (or the caregiver’s face for infants) in all directions. Observe for nystagmus, disconjugate movements or failure to track and regard. Ask caregivers to dim lights and then shine a light into baby’s eyes. Observe for red reflex and subtle nystagmus. Ask parents to cover the child’s eyes, one eye at a time while the patient is looking at the camera. V, VII: Ask the child to open the mouth (“Show me all your teeth!” or “Roar like a lion”). Assess facial symmetry in smiling, chewing, talking. VIII: Ask about hearing and hearing aids. IX, X: Assess swallowing. XI, XII: Observe tongue protrusion at rest and during crying. Assess tongue for fasciculations if close-up is possible. Motor Observe the child sitting in the caregiver’s lap and while lying on a flat surface, determining whether the infant’s posture is normal or is frog-legged vs hyperextended.

Observe movements for symmetry. Ask caregivers to gently pull on each limb and release and observe for normal recoil response. Motor strength: Ask child to dance like a chicken, get up from the floor, or play Head, Shoulders, Knees, and Toes. Parents can perform many maneuvers with infants, especially if you model with a doll, such as scarf sign, horizontal and vertical suspension, and weight bearing. Observe independent sitting, crawling, standing, walking, jumping, running, and hopping (with camera on lower extremities). Observe reach, grasp, transfer. Observe drawing and writing. Sensory. Assess vision and hearing during cranial nerve exam. Observe response to touch on different body parts, differentiating left and right, proximal and distal, medial and lateral. Cerebellar. Observe for tremor or dysmetria with finger-tonose or reach. Observe gait. Reflexes. Parents can perform many primitive reflexes with infants, especially if you model with a doll, including rooting, Moro, tonic neck, truncal incurvation, palmar and plantar grasp, and parachute reflex. Deep tendon reflexes are difficult to illicit without a skilled examiner. Adapted fromGrefe, A., Hsieh, D., Joshi, C., et al. (2020). Pediatric neurological exam via telemedicine. Child Neurology Society, 1e9.

BOX 78.3  Ideal Visits for Telehealth • Patients who require multiple visits for medication management, including those with attention-deficit/hyperactivity disorder, depression, anxiety disorders • Behavioral consultations where observations made as well as video recordings done in the child’s natural setting may be helpful in diagnosis, including autism assessment

• Visits where treatment plans are often derived from history, including sleep disorders, feeding problems, discipline difficulties, enuresis, and encopresis • Visits that require split appointments on same-day service (e.g., children with history of trauma, children in split-household families)

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similar to what we have described for in-person visits. Box 78.3 lists ideal candidates for telehealth.

CONCLUSION Physical examination is a valuable feature of the developmental and behavioral evaluation. It may uncover the cause of a developmental or behavioral problem, allowing families to know the reason for the disorder, the prognosis, and the recurrence risk in other family members. Parents can observe approaches to assist their children with developmental and behavioral problems, such as maintaining composure, complying with requests, and responding to positive reinforcement. The laying on of hands, as we saw in the opening vignette with Dylan, facilitates the creation of a relationship between the clinician and the child. When we touch our patients, we make a literal connection that can serve as a warm beginning of a therapeutic alliance. As we expand the use of telehealth evaluations in developmental-behavioral pediatrics, we need to consider substitute strategies for establishing that relationship and alternatives to accomplish our clinical objectives.

REFERENCES Benziger, Z. (2021). The telehealth ten: A guide for a patientassisted virtual physical examination. American Journal of Medicine, 134(1), 48–51. Dixon, S. D., & Stein, M. T. (2006). Encounters with children: Pediatric behavior and development. Elsevier Science Health Science. Grefe, A., Hsieh, D., Joshi, C., et al. (2020). Pediatric neurological exam via telemedicine. Child Neurology Society, 1e9.

Guido-Estrada, N. (2020). Embracing telemedicine: The silver lining of a pandemic. Pediatric Neurology, 113, 13–14. Hirko, K., & Kerver, J. (2020). Telehealth in response to the COVID-19 pandemic: Implications for rural health disparities. Journal of the American Medical Informatics Association, 27(11), 1816–1818. Holden, E. W., Tarnowski, K. J., & Prinz, R. J. (1983). Reliability of neurological soft signs in children: Re-evaluation of the paness. Journal of Abnormal Child Psychology, 10(12), 163–172. Jones, K. L. (2006). Smith’s recognizable patterns of human malformation. Elsevier. Joshi, C. (2014). Telemedicine in pediatric neurology. Pediatric Neurology, 51, 189–191. Langkamp, D. A., Mcmanus, M. D., & Blakemore, S. D. (2015). Telemedicine for children with developmental disabilities: A more effective clinical process than office-based care. Telehealth and e-Health, 21. Maria, B. L. (2005). Current management in child neurology (3rd ed.). B.C. Decker. Northeast Telehealth Resource Center. (2020). Tips for professional video conferencing and telepresenting. https://www.netrc.org Perednia, D. A., & Allen, A. (1995). Telemedicine technology and clinical applications. JAMA, 273(6), 483–488. Soares, N., & Langkamp, D. (2012). Telehealth in developmentalbehavioral pediatrics. Journal of Developmental and Behavioral Pediatrics, 33, 656–665. Stinnett, T. A., Oehler-Stinnett, J., Fuqua, D. R., & Palmer, L. S. (2002). Examination of the underlying structure of the nepsy: A developmental neuropsychological assessment. Journal of Psychoeducational Assessment, 20(1), 66–82. Trembath, J. T., Kliewer, D., & Bruce, W. (1977). The MilaniComparetti motor development screening test. University of Nebraska Medical Center. Media Resource Center, C Louis Meyer Children’s Rehabilitation Institute.

79 Evaluation of Children Who Are Nonverbal/Minimally Verbal Casey E. Krueger and Jessica Patel

For additional material related to the content of this chapter, please see Chapters 76 and 84.

VIGNETTE Isabella is a 4-year 8-month-old girl referred for a neuropsychological evaluation by her neurologist. The purpose of the evaluation is to gain an understanding of her neuropsychological functioning, with an emphasis of nonverbal domains, in order to recommend appropriate school placement for kindergarten and to guide therapeutic treatment recommendations for therapy. She has a history of symptomatic generalized epilepsy and an expressive language delay. Isabella met early developmental milestones on time. She began having seizures around 18 months of age. She continued to make developmental progress in the setting of ongoing seizures in all domains except expressive language. She currently speaks in one- or two-word utterances that are difficult to understand. Isabella had two seizures in the morning of the evaluation and her mother noted that she is more tired than usual. You observe that Isabella is very friendly, maintains eye contact, and responds appropriately to commands. She points out things that she sees while walking to the evaluation room and asks you to “help” her with the buttons on her raincoat. Isabella becomes frustrated during testing when she does not know the answer. She refuses to complete verbal tasks. She has difficulty maintaining attention and engagement throughout the evaluation and needs praise and rewards after each task. What are the best methods and tools to evaluate Isabella? Will the evaluation be valid and reliable?

It is common for clinicians in a developmental-behavioral pediatric clinic to see children with limited verbal skills. Of course, this population includes preverbal infants and young children who have not yet learned language and speech. However, preschoolers, school-age children, and adolescents may also be nonverbal or minimally verbal. Clinicians need to understand how to modify their usual approaches to work with this population of children in a competent and effective manner. This chapter will cover the following topics: • Which children are unable to use verbal language effectively for communication? • What are specific areas to cover in interview with their families?

• What are critical observations to make of the child during interaction and play? • How can standardized psychological testing be used effectively in this population?

DEFINING THE POPULATION OF CHILDREN WHO ARE MINIMALLY VERBAL The terms nonverbal and minimally verbal are often used to describe children with few to no spoken words or few fixed words or phrases that are used for communication (Kasari, Brady, Lord, & Tager-Flusberg, 2013). In this chapter we use the term minimally verbal to describe this population of children. Minimally verbal children may have sensory, neurologic, cognitive, speech, or psychiatric conditions. Table 79.1 summarizes numerous conditions that may lead a child to be minimally verbal. Unfortunately, many of these children are poorly understood because they are frequently excluded from research studies (Bal, Katz, Bishop, & Krasileva, 2016). Many professionals may assume that the children have autism spectrum disorder (ASD) or are significantly cognitively impaired. However, minimally verbal is not synonymous with intellectually disabled. For example, it is difficult for people with auditory neuropathy to communicate through spoken language because the condition compromises their ability to send speech sounds to the brain for comprehension, but they may have intact cognitive and social function. Landau-Kleffner syndrome is a rare language disorder characterized by the loss of the ability to use or understand language (auditory agnosia) in association with seizures. There may be a complete loss of the ability to speak, while hearing and intelligence are usually preserved (Pearl, Carrazana, & Holmes, 2001). Children with selective mutism, a childhood anxiety disorder characterized by a child’s ability to speak only in select social settings, may have an accompanying expressive language disorder; however, this co-occurrence is difficult to assess because of the paucity of language output during evaluations (Wong, 2010). Even when children do function in the range of intellectual disability, being minimally verbal may lead to an underestimate of their cognitive abilities. Children with Down syndrome often have their cognitive skills underestimated in part because their ability to speak is below their receptive language and nonverbal cognitive skills (Hickey, Hickey, & Summar, 2012). Understanding the nuances of these conditions and their impact on a child’s overall functioning, including relations to cognition, receptive language, and motor skills, is a critical part of the evaluation process. 793

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TABLE 79.1  Examples of Children Who May Be Minimally Verbally Category

Example

Characteristics

Neurodevelopmental disorder

Autism spectrum disorder (wide variety of skills)

May have severe delays in expressive language and/or language regression

Intellectual disability

Down syndrome

Mild-moderate intellectual disability, better receptive than expressive language, weakness in syntactic processing and verbal working memory, strength in visual-spatial skills

Sensory impairment

Deaf children, auditory neuropathy, progressive hearing loss

May detect some sounds, but have poor speech-perception abilities, difficulty understanding spoken speech

Neurologic disorder

Landau-Kleffner, other seizure disorder, brain injury, tumor

Auditory verbal agnosia (loss of language comprehension) and verbal expression (aphasia)

Motor speech disorder

Severe apraxia

Difficulty coordinating the complex oral movements needed to create sounds into syllables and words, motor speech disorder

Motor disorder

Cerebral palsy and other motor disorders

Verbal dystonia

Psychiatric disorder

Severe trauma, selective mutism

Inability to speak in select settings or at select times

CAREGIVER INTERVIEW When working with any child or family, the first and most important step in the assessment process is to understand the goals of the current evaluation (Urbina, 2014). This step is generally achieved through a caregiver interview. The interview is the typical strategy for obtaining a complete developmental history, which may be supplemented with a developmental questionnaire (see Chapter 77). With a minimally verbal child it is particularly important to expand beyond a basic developmental interview to gain information to understand the child’s strengths and needs. The history should investigate the child’s medical history, including information about any preexisting diagnoses. It is also important to ensure that the child has been evaluated by an audiologist and to understand those findings. In discussing the child’s developmental milestones, the history about any regressions that may have occurred and in which domains is also important diagnostically. While a minimally verbal child may have speech and/ or expressive language difficulties, the child may have adequate or strong social communication. The interview should focus on how a child communicates with the family and how, in turn, the family communicates with the child. More specifically, it is important to gain a rich understanding about how the child communicates wants and needs, how the child invites others to interact socially, how the child shares interests with the family, and how the child and family manage joint attention. Children may communicate with gesture, sign, facial expression, exaggerated movements, or stylized actions. Their attempts may be conventional, shared with a large community, or idiosyncratic,

shared only with their family or invented by the children. It is important to ask about any use of assistive and augmentative communication strategies (AAC), including picture exchange communication system (PECS), sign language, or electronic devices. Moreover, understanding how and when these are accessed is also critical. Some children use AAC spontaneously with great effect, whereas others may avoid or resist using AAC. For some, AAC is available at school but not at home. It is important to know if the family uses verbal communication, sign, and/or visual supports (pictures, schedules) to communicate with the child and if so how well they work. Children who are minimally verbal may or may not have delays in their adaptive functioning. It is necessary to ask about their overall daily living skills, communication skills, and adaptive skills. For minimally verbal children, measures of adaptive functioning are of particular importance, as they may help to provide an estimate of their functional ability, particularly when their participation in cognitive evaluations is adversely impacted by their age, ability to participate, or limited verbal production. Understanding their social skills is also particularly important for not only diagnostic clarification but also for informing treatment recommendations. This domain includes questions surrounding their relationship with their siblings, cousins or close friends, peers at school, their parents, other adults in the community, other professionals who may work with them, and individuals who they do not know well. It is also important to ask about communication used for social purposes, such as requesting, sharing interests, use of gestures, and reciprocal interactions.

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CRITICAL OBSERVATIONS TO MAKE OF THE CHILD DURING INTERACTION AND PLAY

information about these domains. As with all assessments, multiple domains are typically assessed.

It is critical to observe children in their play, interactions with their parents, and interaction with you during the evaluation session. This step is particularly important because minimally verbal children may not be readily assessed with structured instruments. Moreover, children learn language in a social context, making it especially important to examine social behavior. Social skills that are used for communicative purposes can be viewed as foundational prelinguistic skills for all children. Joint engagement serves as a springboard between caregivers and children to promote the development of spoken language. In addition, improving symbolic play has been associated with an increase in expressive language skills for children with autism who are minimally verbal (Chang, Shih, Landa, Kaiser, & Kasari, 2018). During the observations, noting the level of imitation, joint attention, affect sharing, requesting, and play skills is important as children use these abilities to learn spoken language (Kasari, Gulsrud, Freeman, Paparella, & Hellemann, 2012). Gestural attainment, rate of communication, and parent response contingency were factors found to be significant predictors of language outcomes in young children with developmental disabilities (Brady, Marquis, Fleming, & McLean, 2004). These skills may be observed in toddlers and preschoolers who are predominantly preverbal. Assessing these skills in older minimally verbal children is also important with adaptations, particularly in terms of materials used, to ensure the stimuli are appropriate for the child’s developmental age and their interests. Evaluating for repetitive and atypical behaviors is important. Repetitive speech and repetitive object play, but not repetitive body movements, may differentially predict developmental outcomes, including language (Watt, Wetherby, Barber, & Morgan, 2008). Documentation in this area may include watching how the child interacts with toys and asking simple questions: Does the child always play in the same way with toys? Does the child inspect or spin the toys repetitively? Does the child play with toys appropriately at developmental level?

Nonverbal Cognitive Functioning

PSYCHOLOGICAL ASSESSMENT Deciding on a protocol for evaluating a minimally verbal child is dependent on several factors, including the child’s age and presenting concerns. A joint assessment with a speech-language pathologist (SLP) is recommended, if possible (see Chapter 107). A SLP may utilize creative strategies for eliciting communication and interpreting limiting speech output based on observations and/or speech samples. SLPs are in a unique position to plan interventions because of their knowledge and skills in effective communication treatments. Table 79.2 includes information on sample instrument selection depending on age and domain of the child. Please refer to the chapters on neuropsychological (Chapter 87) and cognitive testing (Chapter 85) for detailed

Generally speaking, standardized measures of intelligence include measures of both nonverbal and verbal skills; however, children who are minimally verbal would clearly have deficits in their verbal scores. Thus lowered overall cognitive scores could be attributed to a child’s language weaknesses rather than a true deficit in overall cognitive abilities. For children who are nonverbal or minimally verbal, a nonverbal cognitive test provides the best estimate of that child’s current cognitive functioning. Alternatively, using a test that offers a nonverbal index can provide estimates of a child’s nonverbal functioning (Wechsler, 2012, 2014). Overall, a nonverbal cognitive test provides an estimate of cognitive functioning without the impact of language weaknesses, which is critical for minimally verbal patients. Selecting a nonverbal cognitive test includes consideration of the child’s understanding of language. If the test has verbally presented directions, then the assessment of nonverbal cognition will be confounded by receptive language abilities (DeThorne & Shaffer, 2004). Therefore, if there are also receptive language delays, the child would benefit from a task that has visual, rather than verbal, directions. If the child’s receptive language is intact, selecting a test that requires comprehension of verbal instructions may be acceptable. Additional considerations in test selection include if the test is timed or untimed, as untimed tests may provide a better estimate of a child’s nonverbal cognitive abilities (Kasari et al., 2013). Overall, cognitive tests have long been thought to not only provide a snapshot into a child’s current abilities but to be predictive of future abilities. In addition, if a cognitive test is appropriately selected, administered, and interpreted in a way that leads to meaningful interventional approaches for a young child, positive changes in the child’s academic functioning may occur (Kaufman, Raiford, & Coalson, 2016). Thus ensuring that the test being used for decision making about a child is one that is appropriate for a minimally verbal child is critical to interpretation (see Chapter 76). The Leiter International Performance Scale and the Raven’s Colored Progressive Matrices are two of the most widely used tests for an estimate of nonverbal cognitive skills for children with ASD (Kasari et al., 2013). For children with general language weaknesses, the UNIT or TONI-3 are often recommended by language professionals (DeThorne & Shaffer, 2004)

Communication Skills Language is a complex method of communication (see Chapter 44). Language components include expressive, receptive, articulation, and social language skills, and it is a particularly challenging domain to assess in minimally verbal children. Receptive language is of particular importance to evaluate with minimally verbal children as this ability is associated with overall level of general intellectual functioning (full-scale IQ) and prognosis (Selassie, Jennische, Kyllerman, Viggedal,

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TABLE 79.2  Sample Test Selection by Age and Domain for Minimally Verbal Children Instrument

Ages

Considerations

Leiter International Performance Scale, Third Edition (Leiter-3: Roid, Miller, Pomplun, & Koch, 2013)

3–75+ yr

One of the most widely used tests for an estimate of nonverbal cognitive skills for children with autism spectrum disorder (ASD) (Kasari et al., 2013)

Raven’s Colored Progressive Matrices (John, 2003)

5+

One of the most widely used tests for an estimate of nonverbal cognitive skills for children with ASD (Kasari et al., 2013)

Test of Nonverbal Intelligence, Fourth Edition (TONI4; Brown, Sherbenou, & Johnsen, 2010)

6:0–89:11

For children with general language weaknesses, the UNIT or TONI-3 are often recommended by language professionals (DeThorne & Shaffer, 2004)

Universal Nonverbal Intelligence Test 2 (UNIT-2; Bracken & McCallum, 2016)

5–21 yr, 11 mo

For children with general language weaknesses, the UNIT or TONI-3 are often recommended by language professionals (DeThorne & Shaffer, 2004)

16 days–42 mo

Includes measures of expressive and receptive language

The MacArthur-Bates Communication Development Inventories (M-CDI; Fenson, Marchman, Thal, Reznick, & Bates, 2006)

8–37 mo

A parent-report inventory of expressive and receptive language

Peabody Picture Vocabulary Test, Fifth Edition (PPVT5; Dunn, 2019)

2:6–90+ yr

Receptive vocabulary

Preschool Language Scales-5 (PLS-5; Zimmerman, Steiner, & Pond, 2011)

Birth–7:11 yr

Expressive communication and auditory comprehension

Infants–adults

Preintentional and intentional expressive communication (joint attention, gestures, language)

8–30 mo

Nonverbal communication skills

Cognitive

Language Skills Bayley Scales of Infant and Toddler Development, Fourth Edition (Bayley-4; Bayley & Aylward, 2019)

Communicative Intent Complexity Communication Scale (CCS; Brady et al., 2018) Early Social Communication Scales (ESCS; Mundy et al., 2003)

& Hartelius, 2005). Those who are minimally verbal would be expected to show a wide range of skills in this area because they may be extremely delayed or highly advanced. Children who are minimally verbal may show a variety of expressive and social language responses. Some children may point, gesture, or make word approximations to respond. Other children may use signs or other gestures to indicate a response. Some children may be able to point with a pencil or have a stuffed animal point for them. Use of an AAC device may help children express themselves more fully. Interact with the child first to build rapport and test out communication methods. Note the form and function of words, sounds, and any communication. Also, take note of tone and the use of and responsiveness to nonverbal communication. While a clinician may use traditional measures of language functioning in children who are minimally verbal and adapt them as needed to incorporate different communication modalities, the standardized scoring methods do not allow adaptation for use with children who communicate using alternative modalities. Thus reporting any adaptations of procedure and how they may have impacted the results is critical.

Behavioral Rating Scales Children with language disorders have more symptoms of social, emotional, and behavioral problems relative to peers (Norbury, Gooch, & Wray, 2016). Therefore it is important to include measures of emotional and behavioral functioning when evaluating minimally verbally children (Chapter 82). Children with language impairment exhibited lower internalizing scores on the Child Behavior Checklist but higher lethargy and irritability scores on the Aberrant Behavior Checklist compared to verbally fluent children (Fok & Bal, 2019). A limitation of rating scale items is a frequent assumption that expressive language skills are present, which can compromise the validity of the assessment. Examination of individual test items can assist accurate interpretation.

Additional Areas for Consideration An evaluation of a minimally verbal child may assess academic skills, fine motor or visual-motor concerns, memory skills, or executive functioning tests. Consideration must again be made to allow for nonverbal responses and determining the understanding of verbally presented directions prior to proceeding.

CHAPTER 79  Evaluation of Children Who Are Nonverbal/Minimally Verbal

Academics When evaluating a nonverbal child’s academic skills, one may consider a direct observation of a child’s academic skills rather than presenting them with a test that may require oral directions or verbal responses. Measures of adaptive functioning (as discussed earlier) may also provide information about a child’s academic skills. In addition, children may also be allowed to use assistive technology rather than presenting with verbal responses (Frisby, 2003). The documentation of any modification (e.g., if a child is allowed to respond by writing rather than verbally) is also an important part of the evaluation, as it can give information about how a child may function in an academic environment. Fine Motor Skills and Visual-Motor Integration Speech-language impairments have been found to be concordant with fine motor difficulties (Hill, 2001), and children with speech-language impairments have been found to have greater difficulties with visual-motor integration than children without speech-language impairments (Nicola & Watter, 2016). Therefore evaluating these skills and the potential need for occupational therapy or other supportive services is often a necessary part of the evaluation. Memory Memory skills are thought to be a critical component of academic performance (Swanson & Alloway, 2012). Working memory indexes are often included as part of the assessment tools discussed earlier; however, additional memory testing may be warranted depending on the diagnostic question. There are a variety of memory tests examining these skills, with some tests offering specific scales for nonverbal (or visual) memory.

CONCLUSION AND CLINICAL IMPLICATIONS Isabella became frustrated during verbal tasks. The examiner focused on administering tests that did not require a verbal response. Receptive vocabulary, oral comprehension, and nonverbal cognitive functioning were within normal limits. Isabella noticed that things had not gone as planned at the end of the testing session. She told the examiner “sorry” and hugged the examiner. She displayed a high level of empathy and social awareness. A mainstream kindergarten classroom was recommended with push-in supports and increased individualized attention. The evaluation also recommended that Isabella be provided with alternative methods to display her knowledge and communicate. For example, she may demonstrate knowledge via pointing to identify an answer among choices or using an AAC device. Ongoing speechlanguage therapy was also recommended.

Overall, the evaluation of a minimally verbal child requires sensitivity in terms of ensuring that the evaluation is accurate, reliable, and valid. Minimally verbal children present with a variety of abilities. The assessing clinician should never assume that minimally verbal equates to low abilities. A

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strength-based approach also emphasizes the child’s abilities, skills, and preferences. The psychological or neuropsychological assessment of a minimally verbal child differs from that of a verbal child. Traditional psychological assessment instruments may not be appropriate for the minimally verbal child. Creativity is required to carefully substitute alternative measures or approaches to ensure that the evaluation of the child is as accurate as possible. Additional time may be needed to complete these assessments.

REFERENCES Bal, V. H., Katz, T., Bishop, S. L., & Krasileva, K. (2016). Understanding definitions of minimally verbal across instruments: Evidence for subgroups within minimally verbal children and adolescents with autism spectrum disorder. Journal of Child Psychology & Psychiatry, 57(12), 1424–1433. Bayley, N., & Aylward, G. P. (2019). Bayley scales of infant and toddler development—fourth edition technical manual. NCS Pearson. Bracken, B. A., & McCallum, R. S. (2016). Universal nonverbal intelligence test (2nd ed.). Pro-Ed. Brady, N., Marquis, J., Fleming, K., & McLean, L. (2004). Prelinguistic predictors of language growth in children with developmental disabilities. Journal of Speech, Language, and Hearing Research, 47(3), 663–667. Brady, N. C., Fleming, K., Romine, R. S., Holbrook, A., Muller, K., & Kasari, C. (2018). Concurrent validity and reliability for the communication complexity scale. American Journal of Speech and Language Pathology, 27(1), 237–246. Brown, L., Sherbenou, S., & Johnsen, K. (2010). Test of nonverbal intelligence–4 (TONI-4). Pro-Ed. Chang, Y. C., Shih, W., Landa, R., Kaiser, A., & Kasari, C. (2018). Symbolic play in school-aged minimally verbal children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(5), 1436–1445. https://doi.org/10.1007/s10803017-3388-6 Dethorne, L. S., & Schaefer, B. A. (2004). A guide to child nonverbal IQ measures. American Journal of Speech-Language Pathology, 13(4), 275–290. Dunn. D. M. (2019). Peabody picture vocabulary test (5th ed.). NCS Pearson. Fenson, L., Marchman, V. A., Thal, D. J., Reznick, S., & Bates, E. (2006). The MacArthur-Bates communicative development inventories: User’s guide and technical manual. Brookes. Fok, M., & Bal, V. H. (2019). Differences in profiles of emotional behavioral problems across instruments in verbal versus minimally verbal children with autism spectrum disorder. Autism Research, 12(9), 1367–1375. Frisby. C. L. (2003). Nonverbal assessment of academic achievement with special populations. In R. S. McCallum (Ed.), Handbook of nonverbal assessment. Springer. Hickey, F., Hickey, E., & Summar, K. L. (2012). Medical update for children with Down syndrome for the pediatrician and family practitioner. Advances in Pediatrics, 59(1), 137–157. Hill. E. L. (2001). Non-specific nature of specific language impairment: A review of the literature with regard to concomitant motor impairments. International Journal of Language and Communication Disorders, 36(2), 149–171. John. R. J. (2003). Raven progressive matrices. In R. S. McCallum (Ed.), Handbook of nonverbal assessment. Springer.

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Kasari, C., Brady, N., Lord, C., & Tager-Flusberg, H. (2013). Assessing the minimally verbal school-aged child with autism spectrum disorder. Autism Research, 6(6), 479–493. Kasari, C., Gulsrud, A., Freeman, S., Paparella, T., & Hellemann, G. (2012). Longitudinal follow-up of children with autism receiving targeted interventions on joint attention and play. Journal of the American Academy of Child and Adolescent Psychiatry, 51(5), 487–495. Kaufman, A., Raiford, S., & Coalson, D. (2016). Intelligent testing with the WISC-V. Wiley. Mundy, P., Delgado, C., Block, J., Venezia, M., Hogan, A., & Seibert, J. (2003). Early social communication scales (ESCS). University of Miami. Nicola, K., & Watter, P. (2016). Visual-motor integration performance in children with severe specific language impairment. Child: Care, Health and Development, 42(5), 742–749. Norbuy, C. F., Gooch, D., Wray, C., Baird, G., Charman, T., Simonoff, E., Vamvakas, G., & Pickles, A. (2016). The impact of nonverbal ability on prevalence and clinical presentation of language disorder: Evidence from a population study. Journal of Child Psychology & Psychiatry, 57(11), 1247–1257. Pearl, P. L., Carrazana, E. J., & Holmes, G. L. (2001). The LandauKleffner syndrome. Epilepsy Currents, 1(2), 39–45. Roid, G. H., Miller, L. J., Pomplun, M., & Koch, C. (2013). Leiter international performance scale (3rd ed.). Stoelting Company.

Selassie, G. R., Jennische, M., Kyllerman, M., Viggedal, G., & Hartelius, L. (2005). Comorbidity in severe developmental language disorders: Neuropediatric and psychological considerations. Acta Paediatrica, 94(4), 471–478. Swanson, H. L., & Alloway, T. P. (2012). Working memory, learning, and academic achievement. In K. R. Harris, S. Graham, T. C. Urdan, C. B. McCormicktine, G. M. Sinatra, & J. Sweller (Eds.), APA educational psychology handbook, Vol 1: Theories, constructs, and critical issues (1st ed.). American Psychological Association. Urbina. S. (2014). Essentials of psychological testing. Wiley. Watt, N., Wetherby, A. M., Barber, A., & Morgan, L. (2008). Repetitive and stereotyped behaviors in children with autism spectrum disorders in the second year of life. Journal of Autism and Developmental Disorders, 38(8), 1518–1533. Wechsler. D. (2012). The Wechsler preschool and primary scale of intelligence (4th ed.). Pearson Education Incorporated. Wechsler. D. (2014). WISC-V: Technical and interpretive manual. Pearson. Wong. P. (2010). Selective mutism: A review of etiology, comorbidities, and treatment. Psychiatry, 7(3), 23–31. Zimmerman, I., Steiner, V., & Pond, R. (2011). Preschool language scale (PLS-5). Pearson Education Incorporated.

80 Assessment of Temperament Hannah Perrin and Nicole R. Bush

For additional material related to the content of this chapter, please see Chapters 2 and 91.

VIGNETTE Six-year-old James and his parents present to your office to discuss concerns about James’s behavior. James enters the room hesitantly, after significant coaxing from his parents, and avoids eye contact with you, looking down toward the floor. His parents immediately begin talking over one another as they describe that they think something is “wrong” with their son. Ever since the family moved to a new town several months ago, James has become quieter and more withdrawn than usual. His 8-year-old sister loves the new home and has invited new friends from the neighborhood over to play in the backyard. Though his parents have encouraged James to engage with kids at the park or invite children over, James stays close to his parents when meeting new children, declines offers of playdates, and has mostly played alone in his room or with the family’s dog, for whom James has always shown a particular fondness. James’ parents recall that, since infancy, James has seemed “shy” and hesitant in new experiences, in contrast to his sister, who, like them, is gregarious and willing to try anything. In the office you have a productive discussion with James’ parents regarding their understanding of his temperament, their own temperaments, and how differences between their recall of their own approaches to new situations in their childhood and James’ behavior do not necessarily warrant concern. You further discuss how their expectations for James might differ from what they expect for their older daughter, based on each child’s individual temperament.You ask James’ parents to describe his areas of strength, and they depict a kind, empathetic, sensitive child with a love of music and drawing and a strong affinity for animals. They note that although he had just a few close friends at his prior school, they were positive, stable friendships. You support them in coming to the realization that although he might be “slow to warm up” to the new context, he could flourish in a warm and nurturing environment that encourages and develops his strengths. After discussing ways to scaffold James in connecting with new peers in smaller groups, you encourage them to provide opportunities but be patient as he adjusts to the move and develops friendships at his own pace. You also remind them that supporting James’ interests, even in solo or family-based activities, will increase his confidence to take risks in other realms. They resolve to approach James with his temperament in mind going forward.

INTRODUCTION Temperament constructs have been a part of public discourse for thousands of years. As early as 370 BC, Hippocrates proposed four humors (yellow bile, black bile, blood, and phlegm) corresponded to choleric, melancholic, sanguine, and phlegmatic temperaments, respectively, which he postulated were related to personality and behavior. This construct of temperament has evolved over the years, with several prominent child development researchers developing their own refined definitions of temperament. Within the New York Longitudinal Study launched in 1956 (see for review Hertzig, 2020), Thomas and Chess identified nine traits or dimensions of temperament, including activity level, persistence, distractibility, approach/withdrawal, adaptability, mood, intensity, sensitivity, and regularity, as well as three temperament clusters: difficult, easy, and slow to warm up. Influential theorists advanced this work, creating frameworks that emphasize foundational elements of temperament such as emotion regulation (Goldsmith & Campos, 1982), psychobiological features (Kagan, Reznick, & Snidman, 1987; Rothbart, Derryberry, & Posner, 1994), and the genetic bases of temperament (Buss & Plomin, 1984). Although exact definitions vary depending upon one’s preferred framework, current consensus defines temperament as biologically based differences in behavioral and emotional reactivity and regulation that are fairly consistent across contexts or situations. A practical definition is “behavioral style” (Carey, 1998). Although understood to be a set of individual differences that are relatively stable over time, temperament is shaped by environment and experience, with lower stability in infancy and increasing stability in the toddler years (Carey, 1998) that continues into middle childhood.

WHAT DOES TEMPERAMENT PREDICT? Temperament is considered to be a precursor to personality. It can predict later development of healthy or unhealthy behaviors, lifestyles, and even career choices. For example, researchers surveyed resident and fellow physicians using the temperament and character inventory; the resulting personality profile clusters were strongly associated with physician specialty (although many profiles were found in each specialty, and many specialties were noted in each personality profile cluster) (Sievert et al., 2016). Furthermore, while temperament is distinct from behavioral and emotional adjustment and does not automatically confer a specific disorder to an individual, 799

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individuals with certain temperaments can be more prone to certain disorders. For example, James, the 6-year-old child in our vignette, exhibits a high degree of behavioral inhibition, which has been well studied and found to be associated with greater likelihood of developing anxiety than would be expected in children without this temperament trait (PérezEdgar & Guyer, 2014). The child who rates high on scales of activity, distractibility, and intensity, and low on persistence, might be more prone to attention-deficit/hyperactivity disorder (ADHD). However, simply having these traits does not confer the diagnosis, which also requires a level of functional impairment that might or might not be present, depending on how well the child’s environment is suited to that particular child’s needs.

trauma may also make those children more responsive to positive parenting or therapeutic intervention (Boyce, 2016). Culture plays an important role in social attitudes about individual difference characteristics, particularly for children. These culture-specific attitudes shape evaluations of children’s behavioral displays, adults’ responses to them, and the impact the characteristics will have across settings and development for child functioning (Chen, 2018). Given cultural influences, and recent evidence for race-based disparities in child diagnoses related to behavior (Kang & Harvey, 2020), it is important to consider our own biases as clinicians when assessing and providing feedback to families (Schnierle, ChristianBrathwaite, & Louisias, 2019).

ASSESSMENT OF TEMPERAMENT HOW TEMPERAMENT MODIFIES EXPERIENCE OR RESPONSE TO ENVIRONMENT A child’s temperament affects the child, the family, and interactions within the child’s larger community across settings and life stages. Differences between a child’s temperament and the expectations or behavioral styles of that child’s parents, caregivers, or teachers can lead to challenging interactions and affect the child’s resulting behavior, or the perception of the child’s behavior by others. This goodness of fit between a child and the environment can influence whether an individual’s temperament is an asset or a detriment for optimal functioning for that child and the system within which the child is embedded (Chess & Thomas, 1999). Indeed, individual differences in temperament are understood to confer variation in sensitivity to environment, termed differential susceptibility or biological sensitivity to context (Ellis, Boyce, Belsky, Bakermans-Kranenburg, & van Ijzendoorn, 2011) (see Chapter 2). While these concepts simplify a fairly complex understanding of variations in temperament, they are supported by a growing body of evidence (Bush & Boyce, 2016) and have wide appeal with practitioners and parents. Within this framework, individuals with less sensitive temperament are thought to be fairly impervious to influences from the social environment, whereas those with more sensitive temperament are thought to be at greater risk for behavioral and emotional problems when reared in adverse environments, while demonstrating superior outcomes in enriched environments that optimize opportunities for thriving. Such a framework can be helpful to parents by highlighting that their “sensitive” child, whom they see as struggling in certain contexts, may actually outperform peers in social competence, wellbeing, and academic outcomes when exposed to warm, nurturing environments. In contrast, the highly active and impulsive child, who may present challenges in highly structured, sedate settings, could thrive in environments that support energetic individuals with quick decision making. Additionally, although some temperaments place children at greater risk for developing problems when faced with stressors and adversities (such as adverse childhood experiences [see Chapter 15]), the very features that may confer risk for

Temperament is a helpful construct for both families and professionals to comprehend when considering a child’s response to a certain stimulus or situation. It is important to support parents’ understanding that there is a wide range of so-called normal when it comes to child temperament, and that qualities they see in their child as abnormal might not be cause for alarm. In fact, two parents of the same child might disagree on perceptions of their child, based on their own temperament, experiences, or culture. Or, as in the case of James, having a sibling with a contrasting temperament can influence how a parent sees the child. In this case James’ exuberant sister draws a sharp contrast with James’ temperament and more closely resembles their parents’ own qualities, leading to potential bias against James’ behavioral style. The American Academy of Pediatrics (AAP) and Bright Futures recommend that pediatricians discuss temperament with families in routine well-child care, beginning in infancy (AAP, 2007). Several tools have been developed to assist with temperament assessment, including observational measures that can be conducted by a trained professional, and parent/ caregiver questionnaires. However, many of these tools were developed for research purposes and are not feasible in dayto-day clinical encounters. Additionally, there is substantial concern about the validity of parent-rated temperament questionnaires (Gagne, Van Hulle, Aksan, Essex, & Goldsmith, 2011), in part due to the long-standing evidence for poor correspondence between parent ratings and single-visit observations conducted by professionals (Planalp, Van Hulle, Gagne, & Goldsmith, 2017). A few high-quality, structured task-based observational rating scales are available and in common use. The Neonatal Behavioral Assessment Scale (NBAS) (Brazelton & Nugent, 2011) is used for infants beginning a few hours after birth (for infants at least 35 weeks of gestational age) until 2 months of age (or older if developmentally delayed) and measures 28 neurobehavioral items. Developed as a briefer tool, the Newborn Behavioral Observations (NBO) System (Nugent, Keefer, Minear, Johnson, & Blanchard, 2007) is based on the NBAS, measures 18 neurobehavioral items, and can be administered postnatally to infants at least 36 weeks of gestational age until 3 months postterm. Use of both instruments

CHAPTER 80  Assessment of Temperament

in clinical contexts may improve outcomes for caregivers and their infants (Barlow, Herath, Bartram Torrance, Bennett, & Wei, 2018). The Lab-TAB instruments (for a review, see Goldsmith & Rothbart [1991]; for a recent empirical example, see Planalp et al. [2017]) measure temperament in a laboratory setting beginning at 6 months of age and extending through middle childhood. In addition to standardized tasks, clinicians can also make informal observations, with the clinic providing an excellent stimulus to ascertain children’s responses to challenges, such as meeting unfamiliar staff, being expected to wait for appointments, and inoculation or other potentially stressful procedures. Numerous parent-rated questionnaires for various stages of development spanning from early infancy through middle childhood are used to assess temperament, most notably those developed by teams led by Rothbart (Rothbart, 1981; Rothbart, Ahadi, Hershey, & Fisher, 2001) and Carey (Carey & McDevitt, 1978; Fullard, McDevitt, & Carey, 1984; Hegvik, McDevitt, & Carey, 1982; McDevitt & Carey, 1978; MedoffCooper, Carey, & McDevitt, 1993). In addition, some medical practices and other organizations have created their own tools, such as the Infant Toddler Temperament Tool (IT3), an online survey for parents and caregivers (Center for Early Childhood Mental Health Consultation, 2021). Collectively, parent-rated tools provide helpful information on caregiver perceptions of their child’s behavioral and emotional style and how it might be impacting the child’s and the family’s functioning. Because of the concern regarding validity of parent-rated temperament questionnaires, experts typically advocate for a combination of parent-rated questionnaires and observation tools. However, this combination is time intensive and generally not feasible for many clinicians. If parent ratings are used as the primary tool, research finds that questionnaires that are specific and ask about concrete behaviors (rather than general feelings), such as the Children’s Behavior Questionnaire (Rothbart et al., 2001), tend to be less susceptible to parent biases (Gagne et al., 2011). Other respondents, such as teachers or childcare providers, can also supply the clinician with their observations in home and school settings using standardized questionnaires, which ascertain children’s temperament across settings and perceiving adults.

HOW AND WHEN TO INTERVENE Carey (1998) argued that pediatric clinicians can play an essential role in teaching parents about their children’s temperaments—that they are real, important for both the parent and child, and best managed by accommodation. Educating parents/caregivers and teachers about child temperament allows caregivers to reflect on their own biases and adjust their expectations. This education is especially important when there is significant dissonance between the child’s temperament and the caregivers’ expectations and when caregivers are attempting to force children to behave in ways that are counter to their natural temperament. Educating and empowering caregivers can support them in interpreting differences

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BOX 80.1  Interventions The pediatrician can suggest the following interventions, which may help, but should keep the focus on helping the child to make difficult transitions in ways best suited to the child’s particular temperamental profile. • Validate the parents’ feelings of stress, inadequacy, or even anger at the baby or each other. By listening well and acknowledging such emotions, the pediatrician gets useful information about interactions at home. • Ask routinely about sources of support as well as stressors. With a better knowledge base, the pediatrician can help absolve the parents of some of the inevitable selfblame and can help focus the discussion on interactions between baby and caregivers and between the caregivers themselves, rather than on “what’s wrong with the baby.” • Teach parents how to be aware of their baby’s temperament and what it means. • Encourage parents to see the child’s distress as reflecting a difficulty adapting to environmental change, so it will be easier to guide their attempts to comfort the child. • Teach parents methods to calm their baby based on the child’s temperament. Many children do better if left alone for a short while than they do when bombarded with further stimulation as the parents attempt to comfort them. Swaddling, quiet rocking, and calm, gentle handling can also be effective and are more likely to occur when parents understand the nature of the infant’s state of arousal. • Lastly, make parents aware that their child’s temperament also affects their sleeping and feeding patterns. If caregivers can come to see the child’s waking as related to daytime activity levels and not necessarily to unsatisfied hunger, their responses can be more adaptive and appropriate.

in a holistic or positive light and help them to adapt the environment to suit the needs of the child and optimize positive functioning. For example, children with an inhibited, fearful temperament might struggle in a chaotic home or classroom environment, but those same children may thrive in an environment with clear expectations and strong adherence to routines. Children with deep-seated empathy might experience great distress if frequently exposed to sad events, such as news stories of mass casualties, but that temperamental quality might also facilitate success in mentoring younger peers or new classmates. Exuberant, impulsive children are likely to benefit from support with transitions, consistent expectations, and consequences around behavior; they are likely to require opportunities to release energy in settings where they are perceived positively, such as frequent body movement breaks, dance, or sports. Such adaptations of the environment may prevent significant interpersonal challenges with peers and adults, benefitting both the children and those in their social system. With a comprehensive understanding of a child’s temperament, caregivers can include preventative measures in the home or school setting, such as regular mindfulness activities for children who are high in affective arousal or who struggle with behavioral or emotional selfregulation, movement breaks for children with high activity

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levels, or enhanced preparation warnings about and tolerance during transitions between activities for children who struggle to shift attention or are highly sensitive to change. Parents are thereby adjusting the environment to encourage and optimize for the child’s particular strengths (Box 80.1).

CONCLUSION Temperament is an important and often underutilized construct to explain differences among children’s personalities and behaviors. Temperament is distinct from qualities that indicate clinical disorders and should be interpreted in context. Multiple tools have been developed to assess temperament, although reports are susceptible to bias by the rater, and observational ratings are often not feasible to administer in clinical encounters, limiting their use. Educating parents, teachers, and other caregivers about temperament can help to normalize healthy variability in individual differences in reactivity and regulation, support identification of ways to adjust expectations or modify environments to suit a child’s needs, result in a happier and healthier home and school experience, and optimize child functioning.

REFERENCES American Academy of Pediatrics. (2007). Bright futures (3rd ed., p. 369). Barlow, J., Herath, N., Bartram Torrance, C., Bennett, C., & Wei, Y. (2018). The Neonatal Behavioral Assessment Scale (NBAS) and Newborn Behavioral Observations (NBO) system for supporting caregivers and improving outcomes in caregivers and their infants. Cochrane Database of Systematic Reviews, 3. https://doi.org/10.1002/14651858.CD011754.pub2 Boyce, W. T. (2016). Differential susceptibility of the developing brain to contextual adversity and stress. Neuropsychopharmacology, 41(1), 142–162. https://doi.org/10.1038/npp.2015.294 Brazelton, T. B., & Nugent, J. K. (2011). The Neonatal Behavioral Assessment Scale. Mac Keith Press. Bush, N. R., & Boyce, W. T. (2016). Differential sensitivity to context: Implications for developmental psychopathology. In D. Cicchetti (Ed.), Developmental psychopathology (pp. 107–137). John Wiley and Sons, Inc. Buss, A. H., & Plomin, R. (1984). Temperament: Early developing personality traits. Erlbaum. Carey, W. B. (1998). Teaching parents about infant temperament. Pediatrics, 102(E1), S1311. Carey, W. B., & McDevitt, S. C. (1978). Revision of the infant temperament questionnaire. Pediatrics, 61(5), 735–739. Center for Early Childhood Mental Health Consultation. (2021). Infant Toddler Temperament Tool (IT3). https://www.ecmhc.org/ temperament/index.html Chen, X. (2018). Culture, temperament, and social and psychological adjustment. Developmental Review, 50, 42–53. https://doi.org/10.1016/j.dr.2018.03.004 Chess, S., & Thomas, A. (1999). Goodness of fit: Clinical applications from infancy through adult life. Bruner/Mazel.

Ellis, B. J., Boyce, W. T., Belsky, J., Bakermans-Kranenburg, M. J., & van Ijzendoorn, M. H. (2011). Differential susceptibility to the environment: An evolutionary-neurodevelopmental theory. Development and Psychopathology, 23(1), 7–28. https://doi. org/10.1017/S0954579410000611 Fullard, W., McDevitt, S. C., & Carey, W. B. (1984). Assessing temperament in one- to three-year-old children. Journal of Pediatric Psychology, 9(2), 205–217. https://doi.org/10.1093/jpepsy/9.2.205 Gagne, J. R., Van Hulle, C. A., Aksan, N., Essex, M. J., & Goldsmith, H. H. (2011). Deriving childhood temperament measures from emotion-eliciting behavioral episodes: Scale construction and initial validation. Psychological Assessment, 23(2), 337–353. https://doi.org/10.1037/a0021746 Goldsmith, H. H., & Campos, J. J. (1982). Toward a theory of infant temperament. In R. N. Emde & R. J. Harmon (Eds.), The development of attachment and affiliative systems (pp. 161–193). Springer. Goldsmith, H. H., & Rothbart, M. K. (1991). Contemporary instruments for assessing early temperament by questionnaire and in the laboratory. In J. Strelau & A. Angleitner (Eds.), Explorations in temperament. Perspectives on individual differences. Springer. Hegvik, R. L., McDevitt, S. C., & Carey, W. B. (1982). The middle childhood temperament questionnaire. Journal of Developmental & Behavioral Pediatrics, 3(4). Hertzig, M. E. (2020). New York Longitudinal Study (NYLS). In V. Zeigler-Hill & T. K. Shackelford (Eds.), Encyclopedia of personality and individual differences (pp. 3236–3239). Springer International Publishing. Kagan, J., Reznick, J. S., & Snidman, N. (1987). The physiology and psychology of behavioral inhibition in young children. Child Development, 58, 1459–1473. Kang, S., & Harvey, E. A. (2020). Racial differences between black parents’ and white teachers’ perceptions of attention-deficit/ hyperactivity disorder behavior. Journal of Abnormal Child Psychology, 48(5), 661–672. https://doi.org/10.1007/s10802019-00600-y McDevitt, S., & Carey, W. (1978). The measurement of temperament in 3 and 7 year-old children. Journal of Child Psychiatry & Psychology, 19, 245–253. Medoff-Cooper, B., Carey, W. B., & McDevitt, S. (1993). The early infancy temperament questionnaire. Journal of Developmental & Behavioral Pediatrics, 14(4), 230–235. Nugent, J. K., Keefer, C. H., Minear, S., Johnson, L. C., & Blanchard, Y. (2007). Understanding newborn behavior and early relationships: The Newborn Behavioral Observations (NBO) system handbook. Paul H Brookes Publishing. Pérez-Edgar, K. E., & Guyer, A. E. (2014). Behavioral inhibition: Temperament or prodrome? Current Behavioral Neuroscience Reports, 1(3), 182–190. https://doi.org/10.1007/s40473-014-0019-9 Planalp, E. M., Van Hulle, C., Gagne, J. R., & Goldsmith, H. H. (2017). The infant version of the Laboratory Temperament Assessment Battery (Lab-TAB): Measurement properties and implications for concepts of temperament. Frontiers in Psychology, 8(846). https://doi.org/10.3389/fpsyg.2017.00846 Rothbart, M. K. (1981). Measurement of temperament in infancy. Child Development, 52, 569–578. Rothbart, M. K., Ahadi, S. A., Hershey, K. L., & Fisher, P. (2001). Investigations of temperament at three to seven years: The children’s behavior questionnaire. Child Development, 72(5), 1394–1408.

CHAPTER 80  Assessment of Temperament Rothbart, M. K., Derryberry, D., & Posner, M. I. (1994). A psychobiological approach to the development of temperament. In J. E. Bates & T. D. Wachs (Eds.), Temperament: Individual differences at the interface of biology and behavior (pp. 83–116). American Psychological Association. Schnierle, J., Christian-Brathwaite, N., & Louisias, M. (2019). Implicit bias: What every pediatrician should know about the

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effect of bias on health and future directions. Current Problems in Pediatric and Adolescent Health Care, 49(2), 34–44. https:// doi.org/10.1016/j.cppeds.2019.01.003 Sievert, M., Zwir, I., Cloninger, K. M., Lester, N., Rozsa, S., & Cloninger, C. R. (2016). The influence of temperament and character profiles on specialty choice and well-being in medical residents. Peer Journal, 4, e2319–e2319. https://doi.org/10.7717/peerj.2319

81 Developmental Surveillance and Screening Benjamin W. Sanders, Brittany S. Bassitt, Luis A. Rivas Vazquez, and Katharine E. Zuckerman For additional material related to the content of this chapter, please see Chapters 5, 6, and 76.

VIGNETTE An 18-month-old boy, previously born at 34 weeks of gestation, presents for his well-child check. His mother completed a developmental screening tool at the beginning of today’s visit. Developmental surveillance at his 15-month visit revealed a mild fine motor delay. At that time, the clinician gave his mother an activity handout to promote his fine motor development. Today, he has persistent fine motor delay despite working through the activity sheet. The mother also expresses concern about language delay, as the patient only says three words. The screening tool reveals that he does not scribble while holding a crayon, he does not feed himself with a spoon, and he is unable to successfully stack two blocks. His physical exam is unremarkable, his immunizations are current for age, and he has no other medical problems. An autism screening questionnaire is also completed without any concerning findings. The clinician refers the patient to early intervention (EI) and audiology and recommends follow-up in 1 month to monitor his progress and consider referral to a developmental specialist.

BACKGROUND A large body of evidence supports the effectiveness of EI programs and early childhood special education (ECSE) in promoting optimal outcomes for children with developmental delays and risks. Early identification of disability risk is key, as infancy marks a critical period of high neuroplasticity and in which benefits of treatment far outweigh societal costs. Developmental screening using a validated tool, together with developmental surveillance, improves detection of developmental delays and disabilities.

Definitions and Chapter Scope The 2020 American Academy of Pediatrics (AAP) clinical report on developmental surveillance and screening defines developmental screening as “the use of standardized tools to identify and refine” a child’s risk for developmental delay that has not been previously identified (Lipkin & Macias, 2020). Developmental surveillance is a “flexible, longitudinal, continuous, and cumulative process in which knowledgeable health 804

care professionals identify children who may have developmental problems.” The components of surveillance include eliciting and attending to the parents’ concerns about their child’s development; obtaining, documenting, and maintaining a developmental history; making accurate and informed observations of the child; identifying risks and protective factors; and maintaining an accurate record of the process and findings. In the 2020 AAP clinical report additional emphasis was placed on a sixth component: sharing and obtaining opinions and findings with other professionals, such as childcare providers, home visitors, preschool teachers, and developmental therapists, especially when concerns arise (Lipkin & Macias, 2020). While surveillance is conducted at every wellchild visit, screening consists of an objective, standardized tool completed at a set point in time. Both surveillance and screening allow the clinician access to valuable information regarding development to improve detection of delays (AAP Committee on Children with Disabilities, 2001). Developmental screening should be distinguished from other types of developmental assessment in early childhood. General developmental screening traditionally assesses a child’s progress in domains of communication, gross motor, fine motor, and adaptive/problem-solving skills, usually in the first 5 years of life. Autism spectrum disorder (ASD) screening is now an important part of health care screening, given the importance of identifying the condition early. Social-emotional screening is also recommended by the AAP. Lastly, since social adversity in a child’s life affects long-term development, screening for social risk factors and offering corresponding resources to interested families may prove beneficial. For purposes of this chapter in informing clinical practice, we focus on screening children in the domains of general development and ASD, with brief mention of socialemotional screening. Developmental screening occurs in many early childhood settings, including primary health care, subspecialty and multidisciplinary clinics, EI and ECSE, and early educational settings such as Head Start. We focus here on primary care as a model since child health care settings have nearuniversal access to children with regular visits under age 5 years. Surveillance and screening guidelines for primary care are also well established, and the literature offers insights into key principles that apply to early detection of developmental delays and linkage to services in other settings.

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CHAPTER 81  Developmental Surveillance and Screening

IDENTIFYING CHILDREN AT RISK FOR DELAYS AND DISABILITIES

Child Find and the Child Abuse Prevention and Treatment Act

In its third revision the AAP 2020 clinical report on general developmental screening reaffirms its prior recommendation that the pediatric clinician perform developmental surveillance at every well-child visit and screening at 9, 18, and 30 months for children without identified developmental problems or risks (Fig. 81.1) (Lipkin & Macias, 2020). Formal developmental screening at these intervals increases clinical detection of developmental concerns at key early ages where many signs are just beginning to appear. If developmental concerns arise outside of these screening visits, screening tools should be employed; however, screening is not recommended for every well-child visit unless clinical concerns arise. In contrast, developmental surveillance should be integrated with developmental screening in a seamless overall process that facilitates early detection and linking to services. The 2020 clinical report also adds detail to its clinical algorithm and puts increased emphasis on assessing children for school readiness at 4 to 5 years old (see Chapter 83).

EI and ECSE—the public programs providing developmental services to at-risk children—are specified by Parts B and C of the Individuals with Disabilities Education Act (IDEA) and are described in more detail in Chapters 103, 104, and 113. The Child Find component of IDEA Part B mandates that states must identify and evaluate “all children with disabilities residing in the State” and “determine which children are currently receiving needed special education” (IDEA Part B, 34 CFR §300.111[a][1]). Part C obligates participating states to do the same for “all infants and toddlers with disabilities” (IDEA Part C, 34 CFR §303.302[b]). States must also make the public aware of these services through “all primary referral sources (especially hospitals and physicians)” (34 CFR §303.301) and provide for prompt referral by these sources to IDEA services (34 CFR §303.303). Child Find’s emphasis on early identification and timely linkage to services creates opportunities for collaboration between health care clinicians and their state’s EI and ECSE programs. The Child Abuse Prevention and Treatment Act (CAPTA, PL 93-247) mandates additional referrals to EI and ECSE for children “involved in a substantiated case of child abuse or neglect” (CAPTA §106[b][2][A][xxi]). It includes infants affected by parental substance abuse and was designed to address the frequent cooccurrence of child maltreatment and developmental disabilities.

Autism Screening ASD is especially responsive to treatment early in its course, and thus screening in primary care is of high importance. The 2020 AAP clinical report on ASD reaffirmed the prior recommendation for routine ASD screening at 18 and 24 month well visits with a standardized tool (Hyman, Levy, & Myers, 2020) and referral of children with positive screening results to specialty services. Eighteen and 24 months of age were chosen as key times for ASD screening due to the rapid growth of language and social communication skills between the ages of 1 and 2 years. Delays in language and social development—and definitely regressions—by this age should alert clinicians to a possible autism concern.

Clinician Screening Rates Pediatric clinician adoption of developmental screening has gradually increased since its formal recommendation by the AAP in 2001. Only 21% of pediatricians reported screening for development using a validated tool in 2002, with improvement to 63% in 2016 (Lipkin et al., 2020). Parent surveys corroborate this trend (Hirai, Kogan, Kandasamy, Reuland, & Bethell, 2018). This increase has been driven by endorsement by professional organizations, Medicaid reimbursement, and adoption as national care quality metrics. Barriers to developmental screening are discussed later.

Newborn 3–5 days By 1 mo

2 mo

4 mo

6 mo

9 mo

Social-Emotional Screening Social-emotional development in early childhood is important and closely related to other developmental domains (Adams & Tapia, 2013). The AAP Bright Futures Recommendations for Preventive Pediatric Health Care (AAP Committee on

12 mo

15 mo

18 mo

24 mo

30 mo

3 yr

4 yr

Age

Developmental Surveillance

Developmental Screening

Autism Spectrum Disorder Screening

Fig. 81.1  Periodicity diagram. Screening for developmental delays and autism spectrum disorder at well-child visits.

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SECTION 9  Assessment and Measurement in Developmental-Behavioral Pediatrics

Practice & Ambulatory Medicine, Bright Futures Periodicity Schedule Workgroup, 2021) recommends a behavioral assessment at each well-child visit throughout childhood. The 2015 AAP clinical report on social-emotional screening offers guidance to screen “with standardized, well-validated

measures beginning in infancy” with proper preparations to address identified needs (Weitzman & Wegner, 2015). Clinicians should do this “at regular intervals” they determine to be appropriate for their practice. Table 81.1 lists validated screening tools for children starting in infancy.

TABLE 81.1  Commonly Used Parent-Completed Tools for Developmental Screening

Screening Tool

Suggested Ideal Uses; Age Range

General Developmental Screening Ages and Stages Development; Questionnaire 1–66 mo (ASQ-3)

No. of Items

Parent Completion Time

30

Validation Quality

Language Availabilitya

10–15 min

Sens: 86% Spec: 85%

English, Spanish, French, Korean …

Purchase

Grades 4–6

Cost

Literacy Level

Parents’ Evaluation of Developmental Status (PEDS)

Development; 0–8 yr

10

2 min

Sens: 86% Spec: 83%

English, Spanish, Chinese, Vietnamese …

Purchase

Grade 5

Parents’ Evaluation of Developmental Status— Developmental Milestones (PEDS-DM)

Development; 0–11 yr

6–8

5 min

Sens: 83% Spec: 84%

English, Spanish, Chinese, Arabic …

Purchase

Grades 3–4

Survey of Wellbeing of Young Children (SWYC)

Development, social-emotional development, autism, maternal depression, social determinants of health; 1–66 mo

10–17

10 min

Sens: 76% (milestones); 75%–94% (POSIb); >70% (PPSCc) Spec: 77% (milestones); 41%–48% (POSI); >70% (PPSC)

English, Spanish, Vietnamese, Arabic, Haitian-Creole …

Free

Grade 6

20

5–10 min

Sens: 91% Spec: 95%

English, Spanish, Vietnamese, Arabic, French …

Free

Grade 5

Autism Screening Modified Checklist Autism screenfor Autism ing; 16–30 mo in Toddlers (M-CHAT-R/F) Social Communication Questionnaire

Autism screening; 4 yr

40

10 min

Sens: 85% Spec: 75%

English, Spanish, Korean, Russian, German …

Purchase

Grade 6

Parent’s Observations of Social Interactions (POSI)d

Autism screening; 16–35 mo

7

5 min

Sens: 75%–94% Spec: 41%–48%

English, Spanish Vietnamese, Arabic …

Free

Grade 5

Screening Tool for Autism in Toddlers & Young Children (STAT)

Level 2 autism screening; 24–35 mo

12

20–30 mine

Sens: 83% Spec: 86%

English

Purchase

e

Rapid Interactive Screening Test for Autism in Toddlers

Level 2 autism screening; 18–36 mo

9

5–10 mine

Sens: 100% Spec: 84%

English

Purchase

e

CHAPTER 81  Developmental Surveillance and Screening

807

TABLE 81.1  Commonly Used Parent-Completed Tools for Developmental Screening—cont’d

Screening Tool

Suggested Ideal Uses; Age Range

Social-Emotional Screening Ages and Stages SocialQuestionnaire: emotional; Social 1–72 mo Emotional 2 (ASQ: SE)

No. of Items

Parent Completion Time

19–33

Validation Quality

Language Availabilitya

Cost

Literacy Level

10–15 min

By age and disability Sens: 78% Spec: 95%

English, Spanish

Purchase

Grades 4–5

Pediatric Symptom Checklist (PSC) 17b and 35b

Social emotional; 4–16 yr, ≥11 yr

17, 35

0.4) (Thabrew, McDowell, Given, & Murren, 2017). In a review of 44 instruments to assess emotion and behavior problems in youth with long-term physical concerns none met all of the technical criteria to qualify as an ideal instrument and most had demonstrated psychometric integrity only with the general population (Thabrew et al., 2017). Thus clinicians must select from measures developed for the general population.

Access/Purchasing Requirements Central to the establishment of assessment procedures is the premise that clinicians should use only those tests for

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which they have the appropriate training and expertise. Some instruments are available for public use, whereas others require permission and proof of credentials that meet the educational and training qualifications required by the publisher. Purchase privileges are tiered such that a bachelor’s degree is often sufficient for obtaining and administering certain screening measures, and the use of more comprehensive assessment tools requires a master’s or doctoral degree in specified fields with training in the ethical administration, scoring, and interpretation of clinical assessments related to the intended use of the instruments.

Administration of Measures Emotion and behavior rating scales have several options for how and by whom they can be administered. These measures may be sent to families and teachers electronically or by mail prior to visits, provided by frontdesk staff and self-administered in the waiting room, administered by support staff with appropriate training, or administered by clinicians as part of the visit. Instruments can be paper-pencil, electronic, or orally administered using interactive voice-response technology. Electronic administrations may facilitate identification of concerns that otherwise might have been underidentified due to greater ease in accessing other language versions and adolescents’ tendency to disclose more emotion and behavior concerns on electronic platforms than in interviews or on paper (AAP-TFM, 2019). Nonproprietary instruments can be integrated into the electronic health record (EHR) to be pulled into the patient encounter at the time of the visit. Many propriety measures can be administered on publishers’ webbased platforms, a number of which have options to interface with the EHR. Optimizing use of the EHR to make results rapidly available in addition to embedded decision support and referral tools can increase clinical utility.

Scoring and Interpretation Established tools for emotion and behavior assessment are accompanied by guidelines for scoring and interpretation. Rating scales can be scored by trained staff members with consultation from clinicians when questions arise such as how to handle missing data. Shorter measures can be scored quickly by hand, and longer measures typically have electronic scoring systems available. Staff can then enter the scores into the EHR to be reviewed and interpreted by the pediatric clinician. Ethical and meaningful interpretation is more complex than simply comparing the results to cutoff scores for the normative sample. The clinician must also consider contextual factors such as how a child’s ND/DD and ethnicity, culture, and language might impact scores and resemblance to the reference group. Valid interpretation to inform clinical decision making about diagnosis and recommendations typically requires additional information gathered through pertinent follow-up questions or additional measures. Valid interpretation of assessment findings also includes the synthesis of data from multiple informants across different settings. Interpretation of convergent findings is straightforward. More commonly, clinicians are faced with interpreting

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SECTION 9  Assessment and Measurement in Developmental-Behavioral Pediatrics

discrepant findings across informants. Correlations between different sources tend to be low to moderate, ranging from 0.20 to 0.60 with higher levels of correspondence occurring when informants complete reports about concerns that they both have relatively greater opportunities to observe (e.g., externalizing behaviors vs. internalized emotions) or observe within the same context (e.g., parents in the same household vs. parent-teacher) (De Los Reyes et al., 2015). There are numerous reasons informant discrepancies may arise, including characteristics of the raters themselves, varying demands and behaviors across settings, and differing opportunities for informants to observe behaviors (De Los Reyes, 2013; Frick et al., 2020). Key to interpreting and synthesizing discrepant findings is explaining the discrepancies and any methodologic confounds (De Los Reyes, 2013; Frick et al., 2020). Understanding why certain concerns are noted by certain reporters in certain settings allows for a more individualized, context-specific

approach that better reflects youths’ functioning. Collateral information such as that from other raters or observations in clinic can be useful in testing hypotheses about reasons for discrepancies and help clarify situational and observer differences (De Los Reyes, 2013). Repeated measurements over time can also be informative and clarifying when there are discrepant reports across informants (Frick et al., 2020).

Providing Feedback For assessment to be clinically meaningful there must be feedback to the family that includes interpretation of the findings and recommendations for next steps. Feedback may occur in oral and written forms. Regardless of the method, findings should be communicated clearly and in a culturally sensitive manner. It is also important to discuss implications of findings and formulate recommendations in the context of a child’s ND/DD.

TABLE 82.3  General Considerations for Selecting Assessment Instruments for Emotion and

Behavior

Instrument Feature

Important Considerations

Relevancy to the intended purpose of the assessment

• Is appropriate for measuring the targeted domain(s) in the targeted population(s)

Source of information

• Was developed to obtain information from the desired source of information (e.g., obtaining patient information from a parent using an instrument developed for administration to parents)

Instrument content

• Has no irrelevant, inappropriate, or offensive item content

Psychometric integrity

• Meets generally accepted standards for validity and reliability • Has demonstrated responsiveness (for individual data) and/or sensitivity (for group data) to changes in patient status

Availability of relevant normative data

• Has norms that are appropriate for the targeted population

Comprehensibility of results

• Results can be easily understood by the clinician, patient, family members, and other relevant stakeholders

Actionable information

• Provides the clinician with information that can be used to improve services to the patient

Assessment across the continuum of care

• Is appropriate for use with patients receiving care at any level of service (e.g., inpatient, outpatient, partial hospitalization)

Ease of use

• Is easy to administer, score, interpret, and provide feedback

Clinical utility

• Provides information that cannot be obtained any other way • Yields classification accuracy that is better than other measures of the same construct • Is cost effective and easy to use

Brevity

• Is considered short from the patient’s perspective

Reading level

• Requires no higher than an eighth-grade reading level, with sixth grade or lower preferable • Or, can be administered via another mode that does not require reading (e.g., audiotape, interactive voice response) and yields comparable results

Cost

• Inexpensive to use for multiple administrations to a single patient

Overall practicality and feasibility

• Given all considerations, is practical for use in the intended setting, with the intended population, for the intended purpose(s)

Translated and adapted versions

• Was developed according to commonly accepted procedures and guidelines • Has met psychometric and other standards for equivalency with the original version of the instrument

Maruish (2013). Outcome assesment in health settings. In K.F. Geisinger. APA handbook of testing and assesment in clinical and counseling psychology (pp. 303–321). Washington, DC: American Psychological Association.

CHAPTER 82  Evaluation of Emotion and Behavior

Financial Considerations Emotion and behavior assessment carries costs for both health care professionals and families. Whereas there are many free instruments available, some require a fee for use. Other assessment costs include personnel time for training, administration, and scoring; instrument and data storage; and communicating assessment results to families and referring clinicians, schools, or other third parties. Many of these costs can be recuperated by coding and billing for emotion and behavior assessments as a separate current procedural terminology (CPT) code, but families are asked to cost-share when fees are not covered by their insurance. Creating an implementation plan that includes workflow for coding and billing helps optimize coverage and reduce costs for families.

Securing Data Pediatric clinicians using emotion and behavior assessment tools are responsible for maintaining the security of the content and results of these measures. Copyrighted materials such as the instruments, specific items, administration manuals, and scoring guides should be kept separate from patient records. Web-based scoring platforms linked to many copyrighted assessment measures provide encrypted scoring and password protection to facilitate security of the measures and patient information. Within patient health records, standard practices such as EHR encryption, password protection, and signed consent for records release secure the results.

CULTURAL AND LANGUAGE CONSIDERATIONS Clinicians should be sensitive to diverse cultural, ethnic, and religious backgrounds when they assess children’s emotion and behavior. Whereas little has been done to examine the intersectionality of ethnic minority and disability status in assessment, there is growing evidence that instruments to assess youth emotion and behavior may be biased or lack cultural equivalence (Bevan, Liu, Wallis, & Pinto-Martin, 2020; Caballero et al., 2017; Liang et al., 2016). The majority of normative samples for most standardized instruments are for a White population, complicating instrument selection and interpretation of scores for children from different racial and ethnic groups. Furthermore, adaptation of tests for persons of another culture and language too often refers only to translation of test items with little concern for the integrity of meaning, context of items, and appropriate standardization (Dubay & Watson, 2019). Whereas many measures have been translated into languages other than English, there is little research on the conceptual and psychometric equivalence across different language versions and different cultural groups (Dubay & Watson, 2019). The absence of this information further complicates decision making about validity. Many commonly used emotion and behavior assessment measures are less accurate in detecting symptoms in minority groups (Council of National Psychological Associations for the Advancement of Ethnic Minority Interests, 2016) and youth with long-term physical conditions and DD (Thabrew et al., 2017). In the

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case of Anthony, in the chapter-opening vignette, the clinician must take into consideration that available behavioral Spanish-language assessment instruments function differently because of both language and culture and thus likely are not as psychometrically valid as English versions used in the general population (Bevan et al., 2020).

CLINICAL IMPLICATIONS Assessment of emotion and behavior in pediatric settings is an integral tool for treatment planning, treatment monitoring, and outcomes. Wider use of culturally sensitive assessment with multiple methods and collateral informants stands to improve identification of concerns among youth with ND/ DD who are typically at greater risk for emotion and behavior problems. It is important to keep in mind that instruments are not diagnostic on their own, but they do provide useful information concerning the need for more in-depth assessment and intervention. This connection to services is essential to optimizing the value of assessment. Thus in addition to clear protocols for implementation, pediatric clinicians must establish channels to refer for further evaluation and treatment when indicated by the assessment. Unfortunately, this can be a challenge due to the shortage of pediatric behavioral health clinicians in the United States, especially those trained to work with ND/DD populations, and other barriers including lack of culturally responsive services and social stigma. Including psychologists on the integrated health team helps to reduce some of these barriers in addition to developing sound assessment practices. Anthony’s case illustrates the complexity and potential benefits of assessment despite limitations in the field related to specific use of assessment tools with ND/DD and ethnic minority populations. To conduct a culturally sensitive assessment, the clinician would need to be proficient in Spanish or use a trained interpreter to conduct the interview, assessment, and feedback; select measures that are appropriately translated and culturally validated; and seek consultation from the literature or a colleague familiar with the assessment of ethnic minority children and the important sociocultural variables specific to the assessment of Latinx children. A good starting point for standardized assessment with Anthony would be a broadband measure such as the Child Behavior Checklist that is available in Spanish and has been demonstrated to have adequate validity with Latinx populations (Gross et al., 2006; Sivan, Ridge, Gross, Richardson, & Cowell, 2008). When interpreting the findings and formulating recommendations, the clinician would need to take into account cultural variations in conceptualization of behavioral difficulties and recommendations. Critical aspects of feedback to Anthony’s parents in addition to identification of specific emotion and behavior concerns would be education about the benefits of intervention, resources for culturally appropriate referrals to address Anthony’s developmental delays, and discussing their fears and concerns about cost and external authorities.

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Dubay, M., & Watson, L. R. (2019). Translation and cultural adaptation of parent-report developmental assessments: Improving rigor in methodology. Research in Autism Spectrum Disorders, 62, 55–65. https://doi.org/10.1016/j.rasd.2019.02.005 Frick, P. J., Barry, C. T., & Kamphaus, R. W. (2020). Clinical assessment of child and adolescent personality and behavior (4th ed.). Springer. https://doi.org/10.1007/978-3-030-35695-8 Ghandour, R. M., Sherman, L. J., Vladutiu, C. J., Ali, M. M., Lynch, S. E., Bitsko, R. H., & Blumberg, S. J. (2019). Prevalence and treatment of depression, anxiety, and conduct problems in US children. The Journal of Pediatrics, 206, 256–267. https://doi. org/10.1016/j.jpeds.2018.09.021 Godoy, L., & Carter, A. S. (2013). Identifying and addressing mental health risks and problems in primary care pediatric settings: A model to promote developmental and cultural competence. American Journal of Orthopsychiatry, 83(1), 73–88. https://doi.org/10.1111/ajop.12005 Gross, D., Fogg, L., Young, M., Ridge, A., Cowell, J. M., Richardson, R., & Sivan, A. (2006). The equivalence of the Child Behavior Checklist/1 1/2-5 across parent race/ethnicity, income level, and language. Psychological Assessment, 18(3), 313–323. https://doi. org/10.1037/1040-3590.18.3.313 Holmbeck, G., Welborn Thill, A., Bachanas, P., Garber, J., Bearman Miller, K., . . . Zukerman, J. (2008). Evidence-based assessment in pediatric psychology: Measures of psychosocial adjustment and psychopathology. Journal of Pediatric Psychology, 33(9), 958–980. https://doi.org/10.1093/jpepsy/jsm059 Kohn-Wood, L. P., & Hooper, L. M. (2014). Cultural competency, culturally tailored care, and the primary care setting: Possible solutions to reduce racial/ethnic disparities in mental health care. Journal of Mental Health Counseling, 36(2), 173–188. https://doi.org/10.17744/mehc.36.2.d73h217l81tg6uv3 Lai, M. C., Kassee, C., Besney, R., Bonato, S., Hull, L., Mandy, W., & Ameis, S. H. (2019). Prevalence of co-occurring mental health diagnoses in the autism population: A systematic review and meta-analysis. Lancet Psychiatry, 6(10), 819–829. https://doi. org/10.1016/S2215-0366(19)30289-5 Liang, J., Matheson, B. E., & Douglas, J. M. (2016). Mental health diagnostic considerations in racial/ethnic minority youth. Journal of Child and Family Studies, 25(6), 1926–1940. https:// doi.org/10.1007/s10826-015-0351-z Maruish, M. E. (2013). Outcome assesment in health settings. In K. F. Geisinger (Ed.), APA handbook of testing and assessment in clinical and counseling psychology. (pp. 303–321). American Psychological Association. Maruish, M. E. (2018). Handbook of pediatric psychological screening and assessment in primary care. Routledge. Perrin, J. M., Asarnow, J. R., Stancin, T., Melek, S. P., & Fritz, G. K. (2019). Mental health conditions and health care payments for children with chronic medical conditions. Academic Pediatrics, 19(1), 44–50. https://doi.org/10.1016/j.acap.2018.10.001 Sheldrick, R. C., Merchant, S., & Perrin, E. C. (2011). Identification of developmental behavioral problems in primary care: A systematic review. Pediatrics, 128, 356–363. https://doi. org/10.1542/peds.2010-3261 Sivan, A. B., Ridge, A., Gross, D., Richardson, R., & Cowell, J. (2008). Analysis of two measures of child behavior problems by African American, Latino, and non-Hispanic Caucasian parents of young children: A focus group study. Journal of Pediatric Nursing, 23(1), 20–27. https://doi.org/10.1016/j.pedn.2007.07.005 Stiffler, M. C., & Dever, B. V. (2015). Contemporary issues in psychological assessment. Mental health screening at school:

CHAPTER 82  Evaluation of Emotion and Behavior Instrumentation, implementation, and critical issues. Springer International Publishing. https://doi.org/10.1007/978-3-31919171-3 Thabrew, H., McDowell, H., Given, K., & Murren, K. (2017). Systematic review of screening instruments for psychosocial problems in children and adolescents with long-term physical conditions. Global Pediatric Health, 4, 1–25. https://doi.org/10.1 177/2333794X17690314 van Steensel, F. J., Bögels, S. M., & Perrin, S. (2011). Anxiety disorders in children and adolescents with autistic spectrum disorders: A

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meta-analysis. Clinical Child and Family Psychology Review, 14(3), 302–317. https://doi.org/10.1007/s10567-011-0097-0 Ward-Zimmerman, B., & Berlinsky, E. B. (2018). Psychologists’ facilitation of behavioral health screening in pediatric primary care: Rationale and practicalities. In M. E. Maruish (Ed.), Handbook of pediatric psychological screening and assessment in primary care (pp. 93–115). Routledge.

83 Evaluation of School Readiness: Beyond ABCs Jaime W. Peterson, Doris Valenzuela-Araujo, Kylie M. L. Seeley, and Shelly Reggiani

For additional material related to the content of this chapter, please see Chapters 7, 18, 86, and 113.

VIGNETTE What could an ideal evaluation of school readiness look like? A Ready Child in a Ready Clinic: Mia frequented the clinic since she was an infant and looked forward to the new book she received at each visit. Her mother felt comfortable asking questions about Mia’s health and development. The staff was welcoming, respected their culture, and communicated with them in their preferred language. The clinic decor, the picture books and toys for children, and the magazines and pamphlets positively reflected many races and cultures. On this occasion with the clinician, Mia looked with curiosity at the pictures on the table in front of her and proudly answered many questions about the pictures. A Ready School: Mia was very excited to start kindergarten. Her pre-K program, located near the school site, partnered with the school for open houses for incoming kindergarteners.  The school staff created a welcoming environment for children and families, communicating with families in their preferred language, establishing bidirectional communication pathways, embedding multicultural approaches to the open house events, and honoring the home cultures and customs of the incoming families. Centering on families, their cultural asset and wellness, was a cornerstone of the school’s approach to education. A Ready Family: The kindergarten teachers, in partnership with Mia’s pre-K staff, visited Mia and her family at their home as part of an intentional transition to kindergarten. They learned about Mia’s home culture, her strengths and interests, and formed a relationship of trust with the family. During the home visits, the pre-K staff and kindergarten teachers spoke Mia’s home language and demonstrated cultural respect. Mia’s family felt comfortable answering their questions and asking their own. A Ready Community: Mia’s elementary school partnered with culturally specific, local organizations that provide families with after-school care, health care, housing, parenting support, and nutritional resources. Families see these partner organizations, who are frequently at school events, as an integral part of the school community. Families coming into the school can access flyers printed in their home language with images of children and families who reflect themselves and their community.

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INTRODUCTION As you can see, school readiness goes far beyond an evalu­ ation of the child’s mastery of preacademic skills to a broad consideration of the child, school, family, and community. In this chapter we will review the evolution of the concept of school readiness and the importance of school readiness to child health and academic performance. We will explore facets of kindergarten readiness rooted in a family’s cul­ tural strength that expand beyond traditional monocultural or English language–dominant approaches. Finally, we will explore the role of clinicians and pediatric health systems in assessing and promoting school readiness.

WHAT IS SCHOOL READINESS? School readiness was traditionally defined as a measure of a child’s academic proficiency at kindergarten entry. Fur­ thermore, until recently, the emphasis was only on the child’s preacademic skills, such as reading, mathematics, and writ­ ing. Even in the evaluation of the children, we have broad­ ened our view. Currently, we consider school readiness skills in terms of five developmental domains: cognitive, language and communication, physical, social-emotional, and self-help approaches to learning skills (Box 83.1). Using this expanded definition, clinicians play a vital role in evaluating school readiness by assessing and monitoring these skills across development and providing child- and family-specific sup­ ports (Hagan & Duncan, 2017). The expanded definition of school readiness still has two fundamental constraints: (1) the expectation of readiness falls on the child and (2) the expected skills are based on dominant culture and are not culturally responsive. In the United States the dominant culture is defined as that of people who are White and of European descent whose norms, traditions, beliefs, and systems of functioning are recognized and generally unques­ tioned by the vast majority of institutions in the country, including schools (Gulati-Partee & Potapchuk, 2014). Current conceptualizations of school readiness, from early childhood education (ECE) and public health, are broader than the original definition and are more culturally respon­ sive. School readiness is viewed beyond that of the child and includes the readiness of families, communities, and schools (Administration for Children and Families, 2015; Institute of Education Sciences, 2018). The United Nations International Children’s Emergency Fund (UNICEF) outlines the three dimensions of school readiness as “ready children,” “ready

CHAPTER 83  Evaluation of School Readiness: Beyond ABCs

BOX 83.1  Child School Readiness Skills

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BOX 83.2  A Comprehensive Definition

by Developmental Domaina

of School Readiness: A Ready Child, a Ready Family, a Ready School, and a Ready Community

1. Cognitive: Abilities for learning such as memory and attention to learn sound-letter associations, spatial relations, and number concepts (expected at entry) 2. Physical: Child health and nutrition, gross and fine motor skills, perception, vision, and hearing 3. Language development: Language and speech sufficient for communication and learning and literacy 4. Social-emotional development: Emotional health, ability to form relationships with adults and children, ability to separate from family and caregivers 5. Approaches to learning: Self-regulation (behavior and emotions to follow class rules and successful group participation) and executive functioning (impulse control and focus, initiative, and curiosity)

School readiness is about children, families, early environments, schools, and communities. Children are not innately “ready” or “not ready” for school. Their skills and development are strongly influenced by their families and through their interactions with other people and environments before coming to school.a School readiness refers not only to ready children, but to ready communities, families, and schools: A ready child has the skills, knowledge, and attitudes necessary for success in primary school, later learning, and life.b,c Strong physical, cognitive, language, social, and emotional development; has been well cared for physically, interacts socially with others, has a positive self-perception, can understand the emotions of others, and can interpret and express feelings; and approaches learning with enthusiasm and curiosity, has developed language and listening skills, and has cognition skills and general knowledge; and is prepared to learn successfully in school. A ready family is ready for the child to start school, supports the child’s learning by preparing for kindergarten, reads daily with the child, and maintains a positive home-to-school connection.d Supports child in learning and through transition to kindergarten in the preferred language; reads to the child daily and engages in conversation and activities where the child practices listening and speaking; and continues to engage in the child’s learning through the school years. A ready school is ready to receive kindergarten students when it is prepared to deliver evidence-based instruction, hire and continually train knowledgeable teachers and principals, and be culturally responsive of all its students.a,c,d Uses curriculum in kindergarten and the early grades that builds on prior learning; takes into account individual differences in language, culture, and prior experience; and employs teachers who reflect the cultural and linguistic diversity of the students who know how to teach young children and have the resources to do so. A ready community is ready to support its children when it ensures access to health care, provides quality childcare and early education, and invests in resources for families.a,c,d Helps ensure that children have access to health care, immunizations, and nutrition; helps ensure that families have access to quality early childcare and education; and invests in resources and activities that support families and promote school readiness such as nurse home visiting programs, community programs, high-quality and affordable preschools, safe housing, libraries, and parks.

Cultural considerations: Family norms for behavior, communication, and self-expression are rooted in one’s culture and may differ from those of others, both within and outside of a same racial group. From Hagan, J. F., & Duncan, P. M. (Eds.). (2017). Bright futures: Guidelines for health supervision of infants, children, and adolescents (4th ed.). American Academy of Pediatrics.

a

schools,” and “ready families” (UNICEF, 2012). The National Association for the Education of Young Children (2009) states “children are not innately ready or not ready for school: their skills and development are strongly influenced by their fami­ lies and through their interactions with other people and envi­ ronments before coming to school.” The Institute of Education Sciences’ (2018) comprehensive approach for school readiness (Box 83.2) is a model for pediatrics to move beyond the “ready child” and toward the shared understanding that “a ready child results from a ready family, school and community.” The chap­ ter-opening vignette captured this broad conceptualization: A ready child has the skills, knowledge, and attitudes neces­ sary for success in primary school, later learning, and life. Physical, cognitive, language, social, and emotional devel­ opment are essential ingredients of school readiness. A ready family supports the child’s learning by preparing for kindergarten by reading daily with the child, engag­ ing the child in conversation and activities where the child practices listening and speaking, and maintains a positive home-to-school connection. A ready “school” or “learning environment” is prepared to deliver evidence-based instruction; hire and continually train knowledgeable teachers, principals, and staff; and be culturally responsive of all its students. A ready community ensures access to health care, provides quality childcare and early education, and invests in resources for families such as health care, safe housing, access to healthy and affordable food, and transportation.

National Assocation for the Education of Young Children (2009) Administration for Children and Families (2015) c Maxwell and Clifford (2004) d Institute of Education Sciences (2018) a

WHY SHOULD WE EVALUATE SCHOOL READINESS IN A CHILD?

b

Children who enter kindergarten with the skills, knowl­ edge, and attitudes to meet its academic, social, and emo­ tional demands are more likely to succeed academically

throughout their school years and be healthy into their adult life (Peterson, Loeb, & Chamberlain, 2018). Entering school behind developmentally increases the likelihood children will

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struggle academically, drop out of school, engage in high-risk behaviors such as substance use, or be arrested (Fitzpatrick, Boers, & Pagani, 2020; Yoshikawa, 1995). By contrast, enter­ ing school on target developmentally decreases the likelihood children will repeat grades and increases chances that they will achieve higher graduation rates and better adult health outcomes (Duncan et al., 2007). Higher math skills at school entry are associated with later achievement (Duncan et al., 2007), less anxiety, more physical activity, and a healthier weight (Fitzpatrick et al., 2020). Higher reading abilities are associated with increased school connection and academic engagement (Fitzpatrick et al., 2020). Strong social-emo­ tional skills are associated with emotional self-regulation for learning and academic achievement (Duncan et al., 2007). Children who start ready across multiple domains see a last­ ing impact on academic achievement, health, and economic prospects later in life (Campbell et al., 2014; Magnuson & Duncan, 2016; Yoshikawa, 1995). In the United States many children, especially those living in poverty, who are often children of color, enter kindergarten behind their more affluent White peers and struggle to catch up; this difference is called the school readiness gap (Garcia & Weiss, 2017; Lee & Burkham, 2002; Reardon & Portilla, 2016). The initial gap is important because children who start behind tend to stay behind, contributing to later academic achievement gaps in math and early reading between Black and White students, Hispanic and White students, and lowand high-income students (Bassok, Fitzpatrick, Greenberg, & Loeb, 2016; National Center for Education Statistics, 2011; Reardon & Portilla, 2016; Vanneman, Hamilton, Anderson, & Rahman, 2009). It is important to recognize that the child’s limitation in school readiness skills may be the result of long-standing environmental conditions, including inequal­ ity, systemic racism, and institutional and societal practices. These forces perpetuate the cycle of poverty and limit access to comprehensive early childhood experiences that promote child-level skills in school readiness: high-quality preschool programs, libraries, safe spaces for play, books in the home, and role models with experience in the education system (Trent, Dooley, & Dougé, 2019).

HOW SHOULD WE ASSESS SCHOOL READINESS IN A CHILD?

BOX 83.3  Factors to Consider When

Designing Culturally Responsive School Readiness Assessments

Designed for and normed on a cross section of children by race, home language, culture, socioeconomic status, gender, and family makeup. Take into account the cultural norms, assets, and capabilities of children across races and cultures. Mitigate the risk of misunderstanding and misinterpreting cultural expressions and ways of being as not on track or at risk. Take into account the behavioral and social norms of races and cultures vs. the standard set by a single culture way of being. Administered in the home language of the child, ideally by a person familiar to the child, who understands the home culture of the child, and whom the child trusts. Consider if the assessment is a direct translation from English, which may retain the frame of the dominant culture or if it was created in the language the child speaks, accounting for cultural expression, norms, and nuances of the child. Note the cultural frame from which the assessment was designed. Scored appropriately if the child is a dual language learner (is learning ≥2 languages). Children who are dual language learners develop receptive and expressive language at different ways and rates than monolingual children (Sousa, 2010). Administered with the assistance of a bilingual cultural broker who can help the child access an assessment given in English or by a practitioner who is not from the same racial or cultural group as the child. A cultural broker is someone who has the lived experience with the cultural group who speaks the same home language as the child. The person has a strong understanding of the cultural norms of the family and their context as members of a culturally specific group within the community. Designed to be strengths based. Strength-based approaches acknowledge and honor what the child has accomplished vs. focusing primarily on what the child is missing. These assessments allow practitioners to see and respond to a child’s socialemotional awareness, sense of self, relationships with others, and development of personal and academic skills through an asset-based vs. a deficit-based lens.

Use of Culturally Responsive Assessment Tools Traditional school-based kindergarten readiness assessments measure a child in relationship to an educational standard of what a typical child should know and be able to do at the time of the assessment. It is important for practitioners and edu­ cators alike to note that such assessments, when normed on native English-speaking, middle- to upper-class children who had access to prekindergarten programs, take for granted the inherent privileges and advantages this population has at the start of school. Practitioners and educators must consider if the school readiness tool being used assesses for skills and traits that determine school readiness based on a standard exhibited by those in the dominant culture (Gulati-Partee & Potapchuk, 2014) and if the level of readiness assessed can be

attributed solely to a child’s racial, cultural, socioeconomic, and linguistic group membership. School readiness assess­ ments that are culturally responsive honor a child’s race and ethnic heritage as assets to the child’s identity (Box 83.3). As such, the validity and reliability of assessments are ensured when the assessment has been created for and normed on a cross section of children by race, home language, culture, socioeconomic status, gender, and family makeup. School readiness and early childhood assessments, when intentionally developed to be culturally responsive, can inform clinicians about early childhood milestones and can contribute to the preparedness of school systems to welcome

CHAPTER 83  Evaluation of School Readiness: Beyond ABCs

and serve their youngest and potentially most vulnerable learners.  Assessments results should be used to develop culturally responsive approaches to the kindergarten cur­ riculum and experience. Culturally responsive approaches described by Ladson-Billings (1995) support children in framing their own thinking; honor and build on their cul­ tural interests, heritage, and strengths; and examine cur­ riculum from multiple viewpoints while creating a safe and inclusive environment where children can critically think and solve problems.

Assessing School Readiness in Pediatrics The trusted relationship between families and pediatric pri­ mary care clinicians offers an important opportunity to screen, assess, monitor, and promote school readiness of children. The goals of universal developmental screening, outlined by the American Academy of Pediatrics and Bright Futures (Hagan & Duncan, 2017) are early detection of delays, referral for diagnosis, and connection to community-based services as soon as possible to maximize each child’s learn­ ing potential (see Chapter 81). Assessing school readiness is distinct from universal developmental screening: It aims to measure a child’s school readiness abilities to guide parents as they prepare their child for school during the preschool years and to prepare schools for the children they will need to educate. At present, a single, comprehensive assessment tool that is culturally sensitive and available in multiple languages does not yet exist. Given the broad definition of child school readiness domains, a single measure may not be possible. A host of tools (screeners and assessments) are currently used in practice, from informal methods to more complex measures. A combination of measures is likely required to assess all five school readiness domains.

HOW SHOULD WE INTERPRET SCHOOL READINESS ASSESSMENTS? In the past school readiness assessments have been used inappropriately to make a diagnosis or to delay school entry (American Academy of Pediatrics, 1995). Once a culturally responsive, validated tool has been selected, the purpose of a school readiness assessment session should be a shared, collaborative experience with a strengths-based approach rather than a judgment of a “ready” or “unready” child. The assessment should be administered by a clinician who can act as a cultural broker. The results should be used to start a conversation about the individual child’s strengths and areas for growth in the context of the family and home environ­ ments. Open-ended questions allow for exploration of parent perspectives: What are your concerns or curiosities about your child starting school? What surprised you about the assessment we did with your child? Are there areas on the assessment you would like to practice with your child? Which ones do you feel unsure about or less confident? We can use this time to practice together.

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How frequently in your child’s day do you, or another care­ giver, practice with your child? For example, read books or tell stories? Practice counting, shapes, or colors? Talk to your child about feelings and ideas? What types of opportunities does your child have for coop­ erative play with other children or time to practice sharing or taking turns? How frequently are you, or another care­ giver or family member, able to access books in your home language with your child or engage in play? What types of barriers have you encountered when accessing programs like preschool, the library, or early intervention? Are you worried about using any of these programs? What other resources or tools do you wish you could access for your child? Would you like to learn about community programs to help your child continue to grow in these areas? A clinician can tailor support by sharing school readiness knowledge and may offer (1) a safe place to practice behav­ iors, such as how to do shared reading (regardless of literacy level); (2) access to books, such as through Reach Out and Read (ROAR); and/or (3) connection to early childhood resources, such as through parenting groups, childcare, libraries, and pre­ schools. For instance, a first-time parent may not understand how comparing sizes or sorting objects is helpful for learning math; a parent with limited literacy may need reassurance that describing the pictures in the story is as valuable for promoting reading and language skills in their child as reading the text verbatim; or a parent new to the United States may need guid­ ance to successfully navigate the nuances of ECE programs, including eligibility or enrollment processes. These conversa­ tions are ongoing and should be revisited during subsequent well-child checks to monitor progress or identify new barriers. Efforts in primary care to use local school readiness data to tai­ lor clinic interventions is an emerging area of interest.

NEW MODELS FOR ASSESSING SCHOOL READINESS IN ACTION Three examples show how communities, schools, and health systems are trying to move beyond “the ready child” and incorporate the role of the family, schools, and communi­ ties to assess and address school readiness, as reflected in the opening vignette. Two are bold, progressive efforts within Medicaid systems to break down system silos and change care delivery. First, the All:Ready Network of cross-sector orga­ nizations rethinks how systems work to promote the readi­ ness of families, communities, and learning environments (All:Ready, 2020; Figs. 83.1). Second, the New York Advanced Primary Care Model restructures the New York Medicaid sys­ tem to support the holistic needs of families and children to promote school readiness and health (New York’s First 1,000 Days Initiative, 2018; see Fig. 83.2). The third is UNICEF’s international framework for assessment, monitoring, and evaluating the readiness of children, schools, and families for school (Fig. 83.3). These models highlight how pediatric systems can assess and support school readiness to ultimately improve the overall health and success of all children.

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CLINICAL IMPLICATIONS

Fig. 83.1 Spotlight 1: All:Ready (Oregon). In 2017 Health Share of Oregon approved a strategic investment in All:Ready, a regional school readiness network. Health Share unites over 60 organizations from different sectors (health, education, community, and family supports) to address the gap between health and education outcomes in our children ages 0 to 5 years. Using collaborative decision making and an antiracism framework, All:Ready is committed to redesigning how systems work together so that race, class, and disability are no longer predictors of school readiness. To redesign systems, this framework shifts the responsibility off the child and on to the system by asking: As a caregiver and family: Does a family share stories or read to their children daily? Are we reducing disparities in infant mortality and low birthweight? As a community: Are we ensuring that children have access to affordable, safe, and stable housing? Are all children accessing well-child checks, immunizations, and preventive dental visits? As a learning environment: In what ways do we value parents as their child’s first teacher and consider individual differences in language, culture, prior experience, and family educational values, goals, and preferences? Is childcare affordable for all families?

Children who enter school “ready” to learn are likely to expe­ rience good health and educational success. The school readi­ ness gap impacts many children, especially children living in poverty and children of color, due to multiple interacting environmental forces, including ongoing systemic racism and oppression. Pediatric clinicians are trusted partners in the health and education of children and can guide families on the school readiness journey. Clinicians have a responsibil­ ity to work collectively with families and caregivers, learning environments from ECE to K-12, and community partners to ensure all sectors are “ready” to support children. Clinicians support school readiness by building trusted relationships with families, celebrating strengths of the children, and identifying areas for growth in school readi­ ness domains. The assessment includes the readiness of the family, discussing the importance of school readiness and encouraging preschool; and understanding the community’s local resources (e.g., Head Start, preschools, libraries, home visiting programs) to tailor recommendations for each family (Williams & Lerner, 2019). To the extent possible, clinics should include staff and providers that reflect the linguistic, cultural, and racial diversity of the community. Additionally, clinics should consider investment in a range of early interventions to promote school readiness, such as ROAR, parenting groups, community resource navigators, math/literacy texting programs, and individual coaching sessions (Cates, Weisleder, & Mendelsohn, 2016; Peterson, Huffman, & Bruce, 2020; York, Loeb, & Doss, 2019). Health systems need to work with learning systems, families, and communities to decrease barriers to access, utilization, and

New York State Model of Advanced Primary Care for Children Well Child Visits Bright Futures scope and schedule - including all EPSDT required services

Care Coordination/Case Management

Screening - services tailored to need (no one size fits all care)

All Pediatric Practices include care coordination

Family Support Services

Disparities in needs and outcones addressed

Tired with more intensive services for higher complexity (based on risk stratification-guided by screening)

Child/Family support programs integrated into practice (e.g. Reach Out and Read, Healthy Steps)

2 Generation approach to anticipatory guidance, parent education - focused on social emotional support

Care Coordination requires Pediatric specific skills (Early Childhood needs, Education system needs, etc)

Integrated Behavioral Health in Primay Care Setting

Family engagement - culturally competent and trauma informed are prioritized

2 Generation approach

Referrals to and integration with other services (e.g. child care, early intervention, home visiting, peer supprt, early childhood mental health)

Primary Care augmentations following BF recommendations (e.g Reach Out and Reach)

2 Generation approach

IT supported pre and Post visit engagement Good access to care

Fig. 83.2 Spotlight 2: First 1,000 Days on Medicaid (New York). In 2017 New York Medicaid recognized that the earliest years of life greatly influenced long-term health and wellbeing. Over 200 stakeholders from education, child development, child welfare, pediatrics, public health, and mental health came together to develop evidence-based recommendations for how New York State Medicaid could improve outcomes for the youngest New Yorkers, age 0 to 3 years. The 10 recommendations included funding for mental health consultations, implementing statewide home visits and kindergarten readiness assessments, promoting early literacy, providing peer family navigators and dyadic therapy, development of a cross-sector referral system, creation of a Preventive Pediatric Care Clinical Advisory Group, and expanding the Centering Pregnancy model. (From New York’s First 1,000 Days Initiative, 2018.) Italics highlight examples of clinically embedded SR screening and individualized supports.

CHAPTER 83  Evaluation of School Readiness: Beyond ABCs

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Fig. 83.3  Spotlight 3: UNICEF School Readiness Framework (2012). UNICEF’s child-friendly schools provides a conceptual framework for the assessment, monitoring, and evaluation of three key components of school readiness: children’s readiness for school, schools’ readiness for children, and families’ readiness for school. Key factors to selecting measures include the purpose of the assessment, whether the instrument measures school readiness or delay in development, and cultural relevance. Notably, the readiness of a child’s community is not part of the UNICEF framework although it is an integral component of child development.

acceptability of school readiness resources and services across the early learning landscape; share data across sec­ tors to understand school readiness on a population level; and consider school readiness as a health outcome for vari­ ous interventions. Finally, clinicians have a responsibility to advocate for evidence-based policies and programs shown to improve school readiness (i.e., poverty reduction and access to high-quality ECE).

REFERENCES Administration for Children and Families. (2015). The head start early learning outcomes framework: Ages birth to five (HSELOF). Department of Health and Human Services. All:Ready. (2020). Health Share of Oregon. https://www. healthshareoregon.org/allready

American Academy of Pediatrics Committee on School Health and Committee on Early Childhood, & Adoption and Dependent Care. (1995). The inappropriate use of school “readiness” tests. Pediatrics, 95(3), 437–438. Bassok, D., Fitzpatrick, M., Greenberg, E., & Loeb, S. (2016). Within- and between-sector quality differences in early childhood education and care. Child Development, 87(5), 1627–1645. https://doi.org/10.1111/cdev.12551 Campbell, F., Conti, G., Heckman, J. J., Moon, S. H., Pinto, R., Pungello, E., & Pan, Y. (2014). Early childhood investments substantially boost adult health. Science, 343(6178), 1478–1485. https://doi.org/10.1126/science.1248429 Cates, C. B., Weisleder, A., & Mendelsohn, A. L. (2016). Mitigating the effects of family poverty on early child development through parenting interventions in primary care. Academic Pediatrics, 16(3), S112–S120. https://doi.org/10.1016/j. acap.2015.12.015

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Duncan, G. J., Dowsett, C. J., Claessens, A., Magnuson, K., Huston, A. C., Klebanov, P., & Brooks-Gunn, J. (2007). School readiness and later achievement. Developmental Psychology, 43(6), 1428. Fitzpatrick, C., Boers, E., & Pagani, L. S. (2020). Kindergarten readiness, later health, and social costs. Pediatrics, 146(6). https://doi.org/10.1542/peds.2020-0978 Garcia, E., & Weiss, E. (2017). Education inequalities at the school starting gate: Gaps, trends, and strategies to address them. Economic Policy Institute. https://www.epi.org/publication/ education-inequalities-at-the-school-starting-gate/ Gulati-Partee, G., & Potapchuk, M. (2014). Paying attention to white culture and privilege: A missing link to advancing racial equity. The Foundation Review, 6(1), 4. Hagan, J. F., & Duncan P. M. (Eds.). (2014). Bright futures: Guidelines for health supervision of infants, children, and adolescents (4th ed.). American Academy of Pediatrics. High, P. C., American Academy of Pediatrics Committee on Early Childhood, Adoption, Dependent Care, & Council on School Health. (2008). School readiness. Pediatrics, 121(4), e1008– e1015. https://doi.org/10.1542/peds.2008-0079 Institute of Education Sciences. (2018). Preparing a school ready child. https://ies.ed.gov/ncee/edlabs/infographics/pdf/REL_SE_ preparing_a_school_ready_child.pdf;https://ies.ed.gov/ncee/ edlabs/infographics/pdf/REL_SE_The_Ready_School_The_ Ready_Community.pdf Ladson-Billings, G. (1995). But that’s just good teaching! The case for culturally relevant pedagogy. Theory into Practice, 34(3), 159–165. Lee, V. E., & Burkham, D. (2002). Inequality at the starting gate: Social background differences in achievement as children begin kindergarten. Economic Policy Institute. Magnuson, K., & Duncan, G. J. (2016). Can early childhood interventions decrease inequality of economic opportunity? Russell Sage Foundation Journal of the Social Sciences, 2(2), 123–141. Maxwell, K. L., & Clifford, R. M. (2004). School readiness assessment. Young children. Research in Review. https://www. calstatela.edu/sites/default/files/groups/Anna%20Bing%20 Arnold%20Children’s%20Center/Docs/naeyc_school_ readiness_article.pdf National Association for the Education of Young Children. (2009). School readiness position statement. https://www.naeyc.org/

sites/default/files/globally-shared/downloads/PDFs/resources/ position-statements/Readiness.pdf National Center for Education Statistics. (2011). The nation’s report card: Mathematics and reading 2011 (NCES). Author. 2012–458. New York’s First 1,000 Days Initiative. (2018). Schuyler Center for Analysis and Advocacy. http://www.scaany.org/wp-content/ uploads/2018/02/1st1K_Budget_overview_02-18.pdf Peterson, J. W., Huffman, L. C., Bruce, J., Prata, N., Harley, K. G., & Chamberlain, L. J. (2020). A clinic-based school readiness coaching intervention for low-income Latino children: An intervention study. Clinical Pediatrics (Philadelphia) https://doi. org/10.1177/0009922820941230 Peterson, J. W., Loeb, S., & Chamberlain, L. J. (2018). The intersection of health and education to address school readiness of all children. Pediatrics, 142(5). https://doi.org/10.1542/ peds.2018-1126 Reardon, S. F., & Portilla, X. A. (2016). Recent trends in income, racial, and ethnic school readiness gaps at kindergarten entry. AERA Open, 2(3), 2332858416657343. Sousa, D. A. (2010). How the ELL brain learns. Corwin Press. Trent, M., Dooley, D. G., & Dougé, J. (2019). The impact of racism on child and adolescent health. Pediatrics, 144, 2. UNICEF. (2012). School readiness: A conceptual framework. https:// www.unicef.org/publications/files/CFS_School_Readiness_E_ web.pdf Vanneman, A., Hamilton, L., Anderson, J. B., & Rahman, T. (2009). Achievement gaps: How Black and White students in public schools perform in mathematics and reading on the National Assessment of Educational Progress. Statistical Analysis Report. National Center for Education Statistics. NCES 2009-455. Williams, P. G., & Lerner, M. A. (2019). School readiness. Pediatrics, 144(2), e20191766. York, B. N., Loeb, S., & Doss, C. (2019). One step at a time: The effects of an early literacy text-messaging program for parents of preschoolers. Journal of Human Resources, 54(3), 537–566. https://www.muse.jhu.edu/article/729993 Yoshikawa, H. (1995). Long-term effects of early childhood programs on social outcomes and delinquency. The Future of Children, 5(3), 51–75. http://www.ncbi.nlm.nih.gov/pubm ed/8835514

84 Observational Assessment in Developmental-Behavioral Pediatrics Jordan Ezell Klein and Laura Arnstein Carpenter

For additional material related to the content of this chapter, please see Chapters 41, 76, and 79.

VIGNETTE Janelle is a 9-year-old girl with a history of moderate intellectual disability and autism spectrum disorder (ASD). She can use some short phrases, although much of her speech is repetitive and nonfunctional. For the past 2 years she has engaged in self-injurious hand biting that has left a large callous on her hand. This behavior happens only at school. Her teacher reports that Janelle bites her hand when she is overstimulated, and that redirecting Janelle to the classroom sensory corner when she is upset almost always stops this behavior. A behavioral consultant comes into the classroom to collect antecedent-behaviorconsequence (ABC) data (see Fig. 84.1 later). Because the behavior is occurring frequently, only a few days of data collection are needed. The data show that Janelle is redirected to the sensory corner about 50% of the time and that hand biting is ignored or not noticed the rest of the time. The consultant concludes that the behavior serves an escape/avoidance function for Janelle and is her way of communicating, “I don’t want to do this.” About 50% of the time, she is redirected to the sensory corner and thus successfully escapes/avoids nondesired tasks. The consultant designs an intervention to teach Janelle to use index cards to request a break from demands (see Fig. 84.2 later). Other components of the intervention include daily scheduled noncontingent access to the sensory corner, temporarily decreasing the frequency and difficulty of demands, and using a picture schedule to link nonpreferred and preferred activities (e.g., “first worksheets, then swings”).

INTRODUCTION Observational assessment in developmental and behavioral pediatrics is a powerful tool that is used to provide objective information about behavior. Observational assessments involve the systematic recording of information about a child’s behavior either within the natural environment (e.g., the home, the classroom) or during a structured assessment session. For example, if a child is having difficulty sleeping, a clinician may ask parents to systematically record information regarding what time they try to put the child to bed, how they put the child to bed, what time the child actually falls asleep, and each time the child wakes up after

falling asleep and what happens during these wakeful periods. After 1 week of recording this information, the provider will have baseline information regarding the number of hours the child is sleeping as well as information about where to intervene in the child’s sleep. Objective observational data may reveal highly specific information that could not be obtained through parent interview or a standard rating scale. For example, recording systematic information about a child’s sleep may reveal that parents are trying to put the child to bed much later than they realized or that sleep problems only occur on nights after the child has taken a late nap. Thus observational assessments are often used in situations in which standard behavioral recommendations are not having the desired impact or in which briefer parent/teacher rating scales have not provided enough detailed information to formulate or evaluate an intervention. One of the most commonly used applications of observational assessments is in obtaining baseline information about a behavior prior to intervention and then systematically evaluating the response to an intervention. For example, if a child is prescribed a new medication aimed at improving attention, the teacher may be asked to record the proportion of time the child sits in the assigned spot during circle time each morning in the weeks before and after starting the medication. Systematic recording of data can be particularly useful in determining whether a behavior is changing in subtle ways that may not be obvious to a casual observer. For example, a parent may report that a child “doesn’t seem to care” when losing a privilege following an aggressive episode. However, a review of data on aggression can help to objectively determine whether these events are changing in frequency or intensity over time. Although observational assessments typically take more time and effort than traditional behavior checklists and caregiver/teacher interviews (see Chapter), they can also add vital important information to the diagnostic assessment process. Observational assessments may be helpful in supplementing parent/teacher-reported measures to provide a more comprehensive diagnostic evaluation that includes multiple pieces of information. For example, observational assessment is often included in diagnostic evaluations of behaviorally defined disorders such as ASD and attention-deficit/hyperactivity disorder (ADHD). For these disorders, parent/teacher interviews and checklists are often combined with structured behavioral assessment performed by the clinician to arrive 831

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at an accurate diagnosis. Observational assessments may be particularly helpful in classifying behaviors that may have diagnostic overlap. For instance, social avoidance and difficulty initiating conversations are behaviors, consistent with both anxiety and ASD. Thus without direct observation of the behaviors, it is difficult to discern if the child has anxiety, ASD, or both disorders. Although observational assessment can be an incredibly powerful tool, it is important to be aware of some of the possible sources of error associated with this approach (Kantowitz, Roediger, & Elmes, 2009). First, people will sometimes change their behavior when they know they are being observed, a phenomenon sometimes called the Hawthorne effect. For example, if an observer comes into a classroom to take data on a child’s disruptive behavior, that child may engage in more or less disruptive behavior than typical due to the presence of a second adult in the classroom. This effect can be minimized by collecting observations over a longer period of time (e.g., 1 week vs. 1 day). Second, the observer’s expectations or beliefs may incur differential attention to information that confirms these beliefs, and the observer may disregard information that is not consistent with the expectations. This is known as the observer-expectancy effect. For example, if a clinician has been told that a child has ADHD, the clinician may pay special attention to behaviors consistent with this diagnosis. This effect can be minimized by providing clear and objective definitions for the behaviors being observed and by collecting this information in an objective manner. For example, the clinician may record percent of time in seat versus out of seat for a child being evaluated for possible hyperactivity. Observer expectations and beliefs can also directly impact children’s behavior. For example, parents who expect that their child will comply with a direction may give subtle cues that increase the chance of compliance, and the reverse may also be true. This source of error can be minimized through the use of an impartial observer when collecting observational assessment information.

OBSERVATIONAL ASSESSMENT METHODS In the context of observational assessments behavior is defined as the interplay between an individual and the environment that can be objectively observed and reliably measured (Cooper, Heron, & Heward, 2007; Umbreit, Ferro, Liaupsin, & Lane, 2007). Importantly, behavior is not the absence of another behavior. For instance, “not throwing toys” is not a measurable behavior, whereas “using toys appropriately” is an observable and measurable behavior (Heron, Cooper, & Heward, 2015). Internalized behavior and motives are also not observable behaviors and are usually captured most accurately through other means (i.e., self-report measures, clinical interviews). Lastly, in behavioral observations the goal is observation rather than interpretation. The observer is not trying to determine if an individual hit a classmate because of anger or meanness, but to document that the behavior occurred regardless of function (motive). The

recorded information can later be interpreted to determine the function of the behavior. Identifying and describing a target behavior is the first step in observational assessments. A clear, concrete definition of the target behavior increases the consistency and reliability of the behavior observations. Ideally, when describing a target behavior, it should pass the stranger test, whereby a stranger could identify and observe the child’s target behavior solely on the description (Howell, Hosp, & Kurns, 2008). For instance, a target behavior of “attitude problem” is vague and could be interpreted differently by different observers (e.g., talking back to a parent when given a task, rolling eyes). This target behavior would not pass the stranger test because it needs to be defined in specific, measurable terms. On the other hand, “arguing when given an instruction” is more specific, and the likelihood of a stranger identifying that behavior as the same behavior the observer is targeting is high. Clearly describing the targeted behavior in measurable terms is the first step in objectively and reliably defining child behavior. After a target behavior has been clearly identified and described, the observer can begin systematically tracking the child’s behavior. Behavioral observations are an objective way to track behavior patterns, and in some cases to determine the function of a child’s behavior. Through systemized behavior tracking, the examiner is able to quantify observed behaviors. There are four main methods for tracking and quantifying child behavior: time sampling, event sampling, duration sampling, and latency sampling (Table 84.1). Aligning the tracking method to the observation question will ensure that the most useful data for quantifying the target behavior are collected.

Time Sampling Time sampling provides an estimate of the average percentage of time that a behavior occurred during the observation. There are several approaches to time sampling, including partial interval recording, whole interval recording, and momentary time sampling. In partial interval recording the observer simply checks a box to indicate whether or not the behavior occurred at any time during each interval. For example, if a classroom day is divided into seven periods, then at the end of each period, the observer simply checks off whether or not the target occurred at any point during the period behavior (e.g., whether the child got out of the chair without permission). In whole interval recording at the end of each period the observer checks off whether the behavior occurred continuously for the entire period (e.g., whether the child stayed in the chair without getting up for the entire interval). Finally, in momentary time sampling the observer checks off whether the behavior was occurring at one specific time point out of each of the seven periods (whether or not the child was in the chair at one specific predetermined instance).

Event Sampling Event sampling involves recording the exact number of times that a behavior occurs during a set time interval. Short, discrete behaviors (e.g., a neck tic, yelling out in class) lend themselves

CHAPTER 84  Observational Assessment in Developmental-Behavioral Pediatrics

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TABLE 84.1  Definitions and Applications of Various Observational Assessment Methods Question

Sampling Method

Definition

Ideal Use

Example

Approximately how much time of the observed time does the behavior occur?

Time sampling

The percentage of time the behavior occurs during predetermined observation periods

Best for behaviors that occur so frequently that counting the exact amount would be difficult Efficient because the child does not need to be observed continuously

Jimmy worked on his worksheet during 5 of the 10 predetermined observations (50% of the time).

How often does the behavior occur?

Event sampling

Number of times a behavior occurs during an observation period

Best for discrete behaviors in a short period of time Can be counted or tallied

Neveah poked her classmate 5 times from 10:00 a.m. to 10:15 a.m.

How long does the behavior occur or last?

Duration

Percent or average amount of time that a behavior occurs during observation period

Best for behaviors that last more than a few seconds or that have varying length Can use a stopwatch or timer to measure amount

Alyssa spent 25% of math class in her seat (15 out of 60 min).

How long does it take for the behavior to occur?

Latency

The amount of time it takes for an individual to perform the target behavior

Best for behaviors with a clear beginning and for building new behaviors

Rashawn took 10 min to sit in his seat after the bell rang.

Number of Self-Injurious Biting Episodes Per Day 10 9

INTERVENTION

Number of incidents

8 7 6 5 4 3 2 1

BASELINE

0 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25 Days Fig. 84.1  Response to intervention for Janelle (chapter vignette).

to event sampling. The chapter vignette involves tracking of self-injurious biting using event sampling (see Fig. 84.1 later).

Duration Sampling Duration sampling involves using a timer to determine how long a behavior occurs during a specified interval. Behaviors that last a variable amount of time (e.g., staying in one’s chair when expected to do so) may be best quantified through duration sampling.

Latency Sampling Latency sampling involves calculating the amount of time it takes for an individual to perform a target behavior. For example, a stopwatch can be started once an instruction is given and stopped once the instruction is followed, to determine the latency to comply with the instruction. Latency sampling is often used when building new behaviors (e.g., how long it takes a child to get ready for school after waking up in the morning).

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FUNCTIONAL BEHAVIOR ASSESSMENT Once a child’s behavior has been clearly defined and then quantified through tracking, the observer can then analyze the surrounding events to create hypotheses about what may be increasing or decreasing the likelihood of the behavior. A core tenet of behaviorism is that behavior serves a function. In other words children communicate through their behavior, and understanding the function of problem behaviors is essential for designing effective and meaningful interventions. The primary functions of child behavior fall into four categories: escape, avoidance, attention, gaining access to tangibles, and/ or self-stimulation. The same behavior may serve different functions for people or even in the same person at different times. For example, one child who cries loudly may be communicating that he needs attention, while another child who cries loudly may be communicating that a task is too hard and that she needs help. Clearly different interventions are needed to decrease loud crying for these two children. Functional behavior assessment (FBA) is a key component of the applied behavior analysis treatment approach for children with autism and other neurodevelopmental disorders. FBA is the process of gathering and analyzing information about a behavior to determine its function (Hanley, Iwata, & McCord, 2003). The FBA may include interviews with patients with disabilities and their caregivers, record reviews, and systematic direct observation. One type of observational assessment commonly used in this process is collection of antecedent-behavior-consequences of the target behavior (Fig. 84.2): 1. Antecedent. The antecedent (A) to a behavior is the context, event, or stimulus that precedes the presence of the target behavior. In the chapter-opening vignette task demands precede Janelle’s self-injurious biting, making task demands the antecedent.

2. Behavior. The target behavior (B) is the clearly defined behavior of interest that is specific and observable. The target behavior is the behavior that is recorded during the observational assessment. For Janelle, the target behavior is self-injurious hand biting. Thus we have established the antecedent as demands and the behavior as biting. 3. Consequence. The final step is to understand the consequence (C) or the event or reaction that occurs directly after or in response to the target behavior. The consequence can help determine if the behavior is being reinforced, which leads to a maintenance or increase of the behavior (Christ, 2008). For Janelle, she is removed to a sensory corner about 50% of the time after biting her hand. ABC data, interviews, record reviews, and other relevant information can be used to develop hypotheses regarding the relationship between the behavior and the environment. Making an incorrect assumption about why a child is displaying the target behavior can lead to an inappropriate and ineffective response. For instance, when a child hits her seatmate during math, she may be moved to time-out as a consequence, or her teacher may decide to sit next to her to better control her behavior. Moving her to time-out may inadvertently reward escape-motivated behavior by allowing her to skip her math work, even if it is just for a short period of time. On the other hand, having her teacher sit next to her may inadvertently reward attention-seeking behavior, even when the attention is negative. Without knowing the function of the hitting behavior, we risk implementing consequences that may be ineffective or may even cause the behavior to occur more frequently. The FBA is a systemized process of compiling information and data about a target behavior to form evidence-based hypotheses about the function of the behavior (Alberto & Troutman, 2009; Scott, Anderson, & Spaulding, 2008). From the ABC data, the observer is able to determine what

Date & Time

Antecedent (What happened right before the behavior?)

Behavior (What did the behavior look like and how long did it last?)

Consequence (What happened immediately after the behavior?)

3/1 at 1:49

asked to pack up backpack

bit hand hard for 30 seconds and screamed

ignored (teacher helping another child)

demand avoidance

3/2 at 9:15

asked to sit in chair to do worksheets

bit hand and slapped at wall

directed to sensory corner

demand avoidance

3/2 at 11:15

sorting papers

sat on ground, screamed, bit hand

directed to sensory corner

escape

3/2 at 12:03

asked to clean up from lunch

bit hand and cried loudly

direction given again, more firmly

demand avoidance

Possible Function

(continue for several days) Fig. 84.2  ABC data sample for Janelle (chapter vignette). To draw accurate conclusions, ABC data may need to be collected over several days or longer depending on the frequency of the behavior.

CHAPTER 84  Observational Assessment in Developmental-Behavioral Pediatrics

situations (antecedents) may trigger the behavior and what consequences may maintain the behavior. In some cases it may also be necessary to collect information on other events that may make the behavior more or less likely, such as time of day, hunger, sleep, illness, and other factors (setting events). Using the ABCs, the observer is able to determine what situations (antecedents) and actions (consequences) reinforce or increase the target behavior (Kerr & Nelson, 2010). This information is then used to determine the function or the goal of the behavior. Collecting ABC data and completing the FBA is not only important for systematically developing hypotheses about why the behavior is occurring but also helps develop an appropriate and effective intervention. For instance, if the function of a behavior is attention, then attention may be withheld until the positive behavior is shown. So, a student who receives attention when he leaves his seat is instead ignored until he returns to his seat, where he will receive positive attention. Thus attention is now used to positively reinforce the goal behavior and not the problem behavior. Some children may need to be explicitly taught an alternative way to seek attention, such as raising their hand in class or quietly and gently placing a hand on a parent’s arm. Teachers and caregivers may also need to be reminded to pay attention to positive attention-seeking behavior (The IRIS Center for Training Enhancements, 2009). Importantly using the FBA approach to inform interventions tends to lead to a focus on developing prosocial behaviors and adaptive skills rather than on punishing undesired behaviors. Understanding why a behavior occurs allows for an intervention that addresses the function or goal underlying problem behavior, which leads to long-term, positive change in the child’s behavior (Ingram, Lewis-Palmer, & Sugai, 2005). In the vignette for this chapter an intervention was designed for Janelle based on the escape/avoidance function determined from the ABC data. The intervention included use of an index card to request a break, along with some additional classroom modifications. A graph of the number of selfinjurious biting episodes per day (i.e., event sampling) shows that this behavior decreased dramatically after the implementation of this intervention (Fig. 84.1).

PUBLISHED INSTRUMENTS FOR OBSERVATIONAL ASSESSMENT Thus far the observational assessment methods described involve collecting information that is personalized and specific to one child. However, there are also several commercially available tools that can be used to collect observational information for behavioral challenges and for symptoms of ASD.

Behavior The Behavior Assessment System for Children, Third Edition (BASC-3) and Achenbach (CBCL) checklists include

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comprehensive parent/teacher/self-report rating scales and are described in detail in Chapter. In addition to checklists, both of these systems also include behavioral observational measures. The BASC-3 Student Observation System (SOS) can be used for any school-age child. It is completed by a teacher or other observer in the classroom and uses momentary time sampling during 3-second intervals spaced 30 seconds apart over a 15-minute period to quantify both adaptive (e.g., positive peer interactions) and maladaptive (e.g., inappropriate vocalizations) behaviors. The SOS does not include normative data. The Achenbach Direct Observation Form (DOF) is intended to be used with children 6 to 11 years of age in any group setting. The observer scores on-task behavior in 1-minute intervals for 10 minutes, and then rates 88 problem items related to domains such as attention, oppositional behavior, and social withdrawal. The DOF includes normative data, and local comparisons can be made by observing and scoring a comparison child.

Autism Spectrum Disorder Standardized observational assessments are particularly useful for disorders with subjective behavioral diagnostic criteria such as ASD. These assessments can help to objectively quantify subjective diagnostic criteria (e.g., reduced use of eye contact, lack of social reciprocity). The Autism Diagnostic Observation Schedule, Second Edition (ADOS2; Lord et al., 2012) is the most well-researched observational assessment for ASD. The ADOS-2 is a semistructured, observational measure designed to assess symptoms consistent with ASD in individuals 12 months and older. The ADOS-2 has five modules to choose from based on the child’s language level and age. Each module contains a series of structured tasks designed to elicit social communication and other behaviors. Throughout the administration, the examiner tracks the quantity and quality of social behaviors such as eye contact, requesting, sharing enjoyment, and interactive play, as well as communicative behaviors such as conversation and gestures. Additionally, during the observation the examiner notes the presence of any restrictive or repetitive behaviors such as stereotyped speech, sensory interests, repetitive play, or unusual motor movements. The semistructured format creates space for the examiner to probe for specific behaviors both directly in tasks and throughout the entire assessment. For instance, in determining whether the child responds to her name, the examiner follows structured prompts to directly elicit the child’s attention in response to hearing her name. Other behaviors such as eye contact and social approaches are observed throughout the entire observation. Once the 30- to 60-minute face-to-face assessment section is completed, the examiner scores approximately 35 clearly defined items related to ASD. These scores are used to calculate an overall score that reflects whether or not the child’s behaviors during the ADOS-2 fall in the autism spectrum range. Importantly, this tool is just one part of a comprehensive assessment, and the final diagnosis is based on expert clinical judgment.

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The ADOS-2 allows direct observation of behaviors consistent with ASD by a trained clinician. Without direct observation by clinicians, diagnosing ASD requires parents and teachers to report the diagnostic nuances that distinguish ASD from other overlapping symptoms. For instance, children with anxiety and children with ASD may both present with social avoidance, poor eye contact, and sensory avoidance with a child with ASD, which may present similarly in screening measures. Clinical observation aids in distinguishing the source of the observed behavior. The use of observational assessments such as ADOS-2 has been shown to distinguish cooccurring and overlapping disorders such as intellectual disabilities (Thurm, Farmer, Salzman, Lord, & Bishop, 2019). Through the use of observational measures, a trained clinician is able to better assess for differential diagnoses that a questionnaire might be unable to detect. As noted in the introduction, one disadvantage to behavioral observations is the subjectivity and potential bias that comes with each observer. Thus standardization of observations is important for consistent scoring across clinicians. The ADOS-2 has an extensive training process for clinicians to become either clinically reliable or research-reliable administrators of the measure. Even with extensive training, the standard for reliability of observational measures such as the ADOS-2 is around 80% accuracy. Although the ADOS-2 is considered the gold standard for an ASD measure, diagnostic sensitivity is highest when multiple sources of information are used together (Brian, Zwaigenbaum, & Ip, 2019; Kim & Lord, 2012).

CLINICAL IMPLICATIONS Observational assessments give clinicians the power to more accurately assess and understand challenging or maladaptive behaviors. Behavioral observations can elicit and support evidence-based hypotheses of subjective impressions of problem behavior. Clinicians often have to determine the function of a behavior based on parent or teacher report, as they are not usually present during times when problem behavior occurs, such as a tantrum at bedtime or when recess is ending. Thus utilizing a structured system for describing observed behaviors provides clinicians with the information necessary to determine the function of a behavior and therefore develop the most appropriate behavioral intervention. Importantly, the results of observational assessments are often meaningful for the consumer as well as the clinician. Caregivers may be motivated by data that show slow but steady improvements in response to intervention that may not be obvious based on general recall. Patients themselves may also be motivated when they are able to view objective data showing their progress (e.g., serial pictures of improving eyebrow growth in response to trichotillomania treatment). Some clinicians have even used diagnostic observation measures (e.g., ADOS-2) to develop operational definitions of

behaviors that link directly to intervention goals, making goals more personally meaningful (Guercio & Hahs, 2015). Overall, observational assessments are excellent tools that can provide rich insight into the nuances of child behavior. In addition to providing evidence-based and meaningful data, many of the methods described in this chapter are free and readily accessible. The minimal number of materials required for tracking child behavior and completing ABCs and FBAs reduces the barriers for clinicians to assess and intervene with problem behavior. Accessibility is essential for schools and families that may lack resources because of funding or location. Additionally, technology has become integrated into many of these methods and measures to improve efficiency and to allow for remote collection of data.

REFERENCES Alberto, P. A., & Troutman, A. C. (2009). Applied behavior analysis for teachers (8th ed.). Pearson Education, Inc. Brian, J. A., Zwaigenbaum, L., & Ip, A. (2019). Standards of diagnostic assessment for autism spectrum disorder. Paediatrics and Child Health (Canada), 24(7), 444–451. https://doi. org/10.1093/pch/pxz117 Christ, T. (2008). Best practices in problem analysis. In A. Thomas & J. Grimes (Eds.), Best practices in school psychology (pp. 159–176). National Association of School Psychologists. Cooper, J. O., Heron, T. E., & Heward, W. L. (2007). Applied behavior analysis (2nd ed.). Prentice Hall. Guercio, J. M., & Hahs, A. D. (2015). Applied behavior analysis and the Autism Diagnostic Observation Schedule (ADOS): A symbiotic relationship for advancements in services for individuals with autism spectrum disorders (ASDs). Behavior Analysis in Practice, 8(1), 62–65. Hanley, G. P., Iwata, B. A., & McCord, B. E. (2003). Functional analysis of problem behavior: A review. Journal of Applied Behavior Analysis, 36, 147–185. https://doi.org/10.1901/ jaba.2003.36-147 Heron, T., Cooper, J., & Heward, W. (2015). Applied behavior analysis. In E. Neukrug (Ed.), The Sage encyclopedia of theory in counseling and psychotherapy (pp. 51–55). Sage Publications, Inc. https://doi.org/10.4135/9781483346502.n25 Howell, K. W., Hosp, J. L., & Kurns, S. (2008). Best practices in curriculum-based evaluation. In A. Thomas & J. Grimes (Eds.), Best practices in school psychology (pp. 349–362). National Association of School Psychologists. Ingram, K., Lewis-Palmer, T., & Sugai, G. (2005). Function-based intervention planning: Comparing the effectiveness of FBA function-based and non-function-based intervention plans. Journal of Positive Behavior Interventions, 7, 224–236. Kantowitz, B., Roediger, H. L., & Elmes, D. G. (2009). Experimental psychology (10th ed.). Cengage Learning. Kerr, M. M., & Nelson, C. M. (2010). Strategies for addressing behavior problems in the classroom (6th ed.). Pearson. Kim, S. H., & Lord, C. (2012). Combining information from multiple sources for the diagnosis of autism spectrum disorders for toddlers and young preschoolers from 12 to 47 months of age. Journal of Child Psychology and Psychiatry, 53(2), 143–151.

CHAPTER 84  Observational Assessment in Developmental-Behavioral Pediatrics Lord, C., Rutter, M., DiLavore, P., Risi, S., Gotham, K., & Bishop, S. (2012). Autism Diagnostic Observation Schedule–2nd edition (ADOS-2). Western Psychological Services. Scott, T. M., Anderson, C. M., & Spaulding, S. A. (2008). Strategies for developing and carrying out functional assessment and behavior intervention planning. Preventing School Failure, 52(3), 39–49. The IRIS Center for Training Enhancements. (2009). Functional behavioral assessment: Identifying the reasons for problem

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behavior and developing a behavior plan. http://iris.peabody. vanderbilt.edu/fba/chalcycle.htm Thurm, A., Farmer, C., Salzman, E., Lord, C., & Bishop, S. (2019). State of the field: Differentiating intellectual disability from autism spectrum disorder. Frontiers in Psychiatry. https://doi. org/10.3389/fpsyt.2019.00526 Umbreit, J., Ferro, J., Liaupsin, C. J., & Lane, K. L. (2007). Functional behavior assessment and function-based intervention: An effective practical approach. Prentice Hall.

85 Developmental, Cognitive, and Intelligence Testing Stephanie K. Takamatsu, Eleanore M. Hall, and Allison G. Dempsey

For additional material related to the content of this chapter, please see Chapters 76, 79, and 81.

VIGNETTE Nathan is a 4-year, 9-month-old White male with a prenatal diagnosis of 22q deletion syndrome (also known as DiGeorge syndrome). He lives with both his parents and is an only child. English is the primary language spoken in the home. Nathan was referred to a developmentalbehavioral pediatrician (DBP) for evaluation due to his genetic diagnosis and its known developmental and behavioral comorbidities, specifically delays in language, social, and cognitive development. His medical history is significant for a cardiac anomaly, feeding difficulties, and growth delay, as well as delayed developmental milestones and sleep disturbances. Prolonged hospital stays were common in his first year of life due to cardiac surgery and medical complications. Because of his medical challenges and health care needs, he has not been enrolled in any formal childcare or preschool setting. Nathan receives private therapy services, including physical therapy for gross motor delays and occupational therapy for feeding challenges. His parents’ current concerns are that he speaks single words and has a few two-word phrases and has difficulty following and attending to commands. On meeting Nathan, the clinician also noted significant behavioral signs of anxiety. The DBP is aware of possible comorbidities that could explain delays and also considers the prolonged early hospital stays and reduced opportunities for social engagement with peers. Suspecting that Nathan may be exhibiting some learning challenges, the physician administers the Kaufman Brief Intelligence Test, Second Edition (KBIT-2), which is a brief cognitive assessment that measures verbal and nonverbal ability among individuals 4 years and older (Kaufman & Kaufman, 2004). The standard scores produced were over 1 standard deviation below the mean, and the DBP decided to refer the child for psychological testing to (1) determine current developmental level, (2) determine whether delays are consistent with a neurodevelopmental comorbidity, and (3) generate specific recommendations for intervention.

This chapter promotes interdisciplinary collaboration by helping medical clinicians to understand the history of intellectual and developmental testing, and when, how, and why psychological testing can support patient care. It will provide a broad overview of the differences between intellectual and developmental testing, the historical context in which they were 838

developed, and the current limitations to test administration and interpretation. The chapter will detail the psychologist’s approach to testing, including instrument selection, methodology, score interpretation, consideration of scores in diagnostic decision making, and treatment planning (see Chapter 76 for more background related to psychological assessment).

HISTORY OF INTELLECTUAL AND DEVELOPMENTAL TESTING History of Intellectual Testing Intelligence testing emerged in the early 20th century, when the Binet-Simon Intelligence Scale was developed for the purposes of evaluating schoolchildren. As described by Kranzler, Benson, & Floyd, (2016), significant changes in the United States at the turn of the 20th century, including compulsory schooling, created both a surge in school attendance and a need to efficiently evaluate students’ ability levels to place them on “tracks” based on their perceived abilities. Intelligence tests were thus used to determine educational tracks into which students could be placed. Educational tracks based on intelligence testing were eliminated during the civil rights movement amidst concerns and legal battles over the impact of race, ethnicity, and socioeconomic status (SES) on test scores (with minoritized groups and students from lowSES backgrounds disproportionately placed in lower tracks). In the 1970s new legislation emerged that changed the function of intelligence testing in children. Under the Individuals with Disabilities in Education Act (IDEA; Public Law 94-142), first published in 1975 and originally called the Education of All Handicapped Children Act, intelligence testing was now used to identify children in need of additional school services. This new approach to intelligence testing aimed to provide “free and appropriate education” to all children, at school age and beyond (Kranzler et al., 2016).

History of Theories of Intelligence Although early tests sought to determine intellectual level or mental age, future iterations measured results through an intelligence quotient (IQ; i.e., a standardized number that describes a person’s developmental skill level in comparison to chronologic age). The Cattell-Horn-Carroll (CHC) theory of cognitive abilities offers the most widespread theory of intelligence (Flanagan & Dixon, 2014; McGrew & Flanagan, 1998). This model conceptualizes intelligence as consisting

CHAPTER 85  Developmental, Cognitive, and Intelligence Testing

of various hierarchically arranged cognitive abilities. At the highest level is the most general factor of intelligence: g. The second level down contains numerous broad cognitive abilities, such as fluid reasoning (Gf), comprehension-knowledge (Gc), short-term memory (Gsm), long-term storage and retrieval (Glr), and visual processing (Gv). The bottom tier contains more than 80 narrow cognitive abilities. The CHC theory provides common language and theoretical ground for test developers and providers (Kranzler et al., 2016). Indeed, most contemporary intelligence tests are based on this theory.

History of Developmental Testing Although intellectual and cognitive abilities are considered relatively stable traits, they are not considered to be measurable and/or stable until early school age, or approximately 7 years due to rapid development in the cortex and prefrontal cortex in early childhood (Schneider, Niklas, & Schmiedeler, 2014). Thus developmental testing was created to monitor early childhood precursors to the formation of intellectual skills (language, motor movements, early cognitive skills). The first standardized developmental assessments emerged in the latter half of the 20th century, when the Head Start movement began in the United States, and there was a need to monitor progress in early childhood. The Denver Developmental Screening Test was developed in 1967 and was the first developmental screening tool to identify young children (70 kg

CHAPTER 99  Psychopharmacology

et al., 2018; Martinez-Raga et al., 2013). In overdoses they can cause significant bradycardia. Guanfacine tends to be less sedating and less potent in lowering blood pressure when compared to clonidine (MartinezRaga et al., 2013). Rebound hypertension can occur with abrupt cessation; medications should be weaned instead.

Approved Indications Guanfacine ER and clonidine ER are both FDA approved as monotherapy and adjunctive therapy to treat ADHD. In their short-acting forms both are approved as centrally acting antihypertensives.

Off-Label Uses Guanfacine XR can be used to treat oppositional defiant disorder symptoms in children with cooccurring ADHD, as well as reduce tics (see Chapter 71) and ADHD symptoms when cooccurring (Osland et al., 2018). When used for children with autism spectrum disorder (ASD) and ADHD, reduction in oppositional behavior and repetitive behaviors has been demonstrated (Politte et al., 2018). Clonidine is often used to treat insomnia associated with ADHD and stimulant medication or other neurodevelopmental disorders. Clonidine-based medications are often used in opiate detoxification and posttraumatic stress disorder. It can also be used for neuroleptic-induced akathisia.

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weight, heart rate, and blood pressure, as well as symptom checklists. Baseline and follow-up ECG are not indicated unless history and exam suggest otherwise (Thomas et al., 2011).

Interactions Guanfacine is mainly metabolized by CYP3A4, so its dose may need to be increased up to twofold if adding a potent CYP3A4 inducer (such as phenobarbital or rifampin). Adding a potent inhibitor (such as ketoconazole, erythromycin, or fluconazole) calls for halving the guanfacine dose (Schoretsanitis, de Leon, Eap, Kane, & Paulzen, 2019). Clonidine is a CYP2D6 substrate (Schoretsanitis et al, 2019). No serious cardiovascular adverse events are reported when combining either clonidine- or guanfacine-based medication with psychostimulants (Martinez-Raga et al., 2013).

Clinical Pearls Children and teens with ADHD who cannot tolerate an increase in stimulant due to concerns with poor appetite, insomnia, or anxiety may benefit from adjunctive treatment with a long-acting alpha agonist. Long-acting clonidine can be particularly helpful in children whose sleep problems involve both long latency and night waking. Both long-acting formulations require pill swallowing.

Dosing

ATOMOXETINE

Clonidine is available and used for ADHD as oral short-acting tablets (given three to four times daily) and as a long-acting tablet (given twice daily) (see Table 99.2), and as a transdermal patch delivering a consistent dose across the day for 7 days. For each formulation, the medication is often started once daily at a low dose to minimize sedation, and the dose is increased weekly to effect as tolerated. Clinicians treating children often start at fractions of the available doses (e.g., at 0.025 mg) of clonidine once or twice daily. Short-acting guanfacine is usually dosed twice daily. Similar to use of clonidine, clinicians treating children often start with once daily dosing and may use fractions of the available doses (e.g., at 0.25 mg) once or twice daily, increasing weekly to effect as tolerated. Guanfacine XR can be given in the morning or the evening. Some initiate treatment with bedtime dosing to prevent daytime sedation, moving the dose to the morning after several days. Originally approved at 1 to 4 mg per dose, additional evidence expanded the range of efficacy and safety of guanfacine extended release to up to 7 mg per dose (0.12 mg/kg), which may be necessary for adolescents (Huss et al., 2018). When switching between shortand long-acting medications one cannot simply use the same dose. Due to different pharmacokinetic profiles one should titrate the new medication as described earlier.

Atomoxetine is a second-line treatment for ADHD as a monotherapy and can be used as adjunctive therapy (see Table 99.2).

Monitoring Monitoring should include baseline history (including cardiac- specific history), physical exam, heart rate, blood pressure, weight, height, and standardized symptom checklist. Every 6 months, the clinician should obtain a repeat height,

Mechanism of Action Atomoxetine is a highly selective noradrenaline reuptake inhibitor that was originally developed as a potential antidepressant but never approved for that indication (Scott, RippergerSuhler, Rajab, & Kjar, 2010). By blocking noradrenaline reuptake and increasing the levels of this neurotransmitter at the synapse, atomoxetine impacts the functions of the prefrontal cortex related to ADHD symptoms. It was the first nonstimulant medication FDA approved (in 2002) to treat ADHD (Martinez-Raga et al., 2013).

Efficacy Atomoxetine reduces ADHD symptoms on parent and teacher rating scales (Waxmonsky et al., 2010). Both stimulant and guanfacine ER monotherapy treatments result in a larger reduction of ADHD symptoms compared to atomoxetine (Joseph et al., 2017). Parents particularly have observed greater improvements when atomoxetine is combined with behavior therapy (Waxmonsky et al., 2010).

Side Effects Atomoxetine is generally well tolerated and often chosen when stimulants are not tolerated. Adverse effects usually occur early in treatment and include dry mouth, nausea, constipation, decreased appetite, dizziness, sweating, dysuria, sexual problems, and insomnia (Martinez-Raga et al., 2013). Symptoms typically self-resolve. Increases in heart rate and

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blood pressure are generally clinically insignificant (MartinezRaga et al., 2013). Atomoxetine potentially exacerbates tics in those with ADHD (Yang, Li, Gao, & Zhao, 2017). As is the case with selective serotonin reuptake inhibitors (SSRIs), there is an increased rate of suicidal thinking in those taking atomoxetine (Fedder et al., 2020). Atomoxetine should be used with care in those with hepatic impairment; if used, dosing should be adjusted and careful monitoring should occur (Fedder et al., 2020).

Approved Indications Atomoxetine is approved to treat ADHD in children over 6 years, adolescents, and adults. Atomoxetine is a second-line medication for most with ADHD, and it may be first-line treatment for those with cooccurring substance abuse as it does not have abuse potential.

Off-Label Uses While not robust, the literature suggests atomoxetine may reduce oppositional defiant behaviors. The literature is mixed as to whether atomoxetine improves anxiety and/or depression cooccurring with ADHD. The presence of anxiety or depression does not correlate with response to atomoxetine in children treated for ADHD (Scott et al., 2010).

Dosing Atomoxetine dosing is weight based. Children start at 0.5 mg/ kg/day with increases every 2 to 3 weeks to effect or a maximum of 1.4 mg/kg/day. It can be given once daily or divided into two doses. Capsules should be taken whole and not opened. Atomoxetine can be discontinued abruptly without a taper (Fedder et al., 2020).

Monitoring Monitoring should include baseline history (including cardiac specific history), physical exam, heart rate, blood pressure, weight, height, and standardized symptom checklist. Every 6 months, repeat height, weight, heart rate, and blood pressure, as well as symptom checklists. Baseline and followup ECG are not indicated unless history and exam suggest

VIGNETTE 2 A 13-year-old boy with a history of well-controlled ADHD presents with an 8-week history of depressed mood on most days. Upon further questioning, he endorses that he has been spending less time with his friends and has become less interested in his community basketball team, which he previously enjoyed. His parents state he is “sad and just kind of out of it” most days and just “lies around” during the weekends. His academic performance, which had previously been stellar, has slipped considerably. He does not have any suicidal ideation and there is no prior history of suicide attempts. You diagnose major depressive disorder (MDD) and recommend cognitive-behavioral therapy. His family has many questions regarding possible medication use, including side effects.

otherwise. Liver damage is rare; routine liver function testing is not indicated. Sexual dysfunction is a potential side effect and should be monitored in adolescents and young adults.

Interactions Primarily metabolized by CYP2D6, atomoxetine carries a risk of many drug-drug interactions. Further, its metabolism can vary from person to person due to genetic polymorphism across races and ethnicities.

Clinical Pearls There is no abuse potential for atomoxetine. Thus it may be considered for those with risk for abuse or diversion of stimulant medication. Unlike stimulants, atomoxetine may take many weeks for full therapeutic effects (Fedder et al., 2020).

SELECTIVE SEROTONIN REUPTAKE INHIBITORS Mechanism of Action SSRIs are a class of medications commonly used in both pediatric and adult populations for the treatment of anxiety and mood disorders. Information about commonly used SSRIs is in Table 99.3. Serotonin is a neurotransmitter associated with a variety of human responses, such as mood, reward, memory, attention, and appetite. SSRIs work by selectively blocking serotonin uptake through inhibition of ATPase. This inhibition increases the length of time serotonin can act in the postsynaptic binding sites. This inhibition alone, however, does not fully account for SSRIs’ therapeutic benefit. Full therapeutic effect, which often takes weeks after initiation of an SSRI, is likely due to additional downstream effects of serotonin reuptake inhibition. This includes an increase in production of brain natriuretic peptide and modification to the serotonin receptor (Krishnan & Nestler, 2008). While SSRIs, as their name implies, selectively bind to serotonin receptors, this selectivity is not absolute. Some SSRIs also partially inhibit other neurotransmitters. Specifically, paroxetine partially inhibits the reuptake of norepinephrine, as does sertraline with dopamine. Additionally, paroxetine also exhibits some anticholinergic activity (Schatzberg & DeBattista, 2019).

Efficacy Multiple studies have demonstrated the effectiveness of SSRIs in the treatment of pediatric anxiety disorders (Locher et al., 2017). This effectiveness appears to be enhanced when combined with cognitive-behavioral therapy, as demonstrated in the Child/Adolescent Anxiety Multimodal Study (Piacentini et al., 2014).

Side Effects In general, SSRIs are well tolerated. The most common side effects include gastrointestinal symptoms such as nausea,

CHAPTER 99  Psychopharmacology

963

TABLE 99.3  Medications Used to Treat Depressive and Anxiety Disorders Generic Name

Medication Class

Brand Name

On-Label Uses

Off-Label Uses

Starting Dose

Max Dose

Fluoxetine

SSRI

Prozac

MDD 8–18 yr OCD 7–17 yr

Migraines GAD

10 mg

60 mg

Sertraline

SSRI

Zoloft

OCD 6–17 yr

GAD Separation anxiety

25 mg

200 mg

Citalopram

SSRI

Celexa

None in pediatrics

MDD

10 mg

40 mg

Escitalopram

SSRI

Lexapro

MDD 12–17 yr

MDD GAD

5 mg

20 mg

Fluvoxamine

SSRI

Luvox

OCD 8–17 yr

GAD

25 mg

200 mg (ages 8–11 yr) 300 mg (ages 12–18 yr)

Paroxetine

SSRI

Paxil

None in pediatrics

MDD

10 mg

60 mg

Duloxetine

SNRI

Cymbalta

GAD 7–17 yr

40 mg

120 mg

Venlafaxine

SNRI

Effexor

None in pediatrics

Social anxiety MDD GAD

37.5 mg

225 mg

Imipramine

Tricyclic antidepressant

Trofanil

None in pediatrics

Enuresis

10 mg

75 mg

Bupropion

Aminoketone antidepressant

Wellbutrin

None in pediatrics

MDD ADHD

100 mg

300 mg

GAD, Generalized anxiety disorder; MDD, major depressive disorder; OCD, obsessive-compulsive disorder; SNRI, selective norepinephrine reuptake inhibitor; SSRI, selective serotonin reuptake inhibitor. Of the SNRIs, only duloxetine and venlafaxine are shown due to limited pediatric data in other SNRIs.

vomiting, diarrhea, and cramping. The gastrointestinal symptoms are due to the presence of gut-lined serotonin receptors. These symptoms usually resolve in 2 to 4 weeks. Slow titration of the medication may help with symptoms. Another potential side effect of SSRIs, particularly paroxetine, is sedation. This can be mitigated by taking the dose at night (Schatzberg & DeBattista, 2019). An additional side effect, particularly in prepubescent children, is behavioral activation. This is characterized by the onset of hyperactivity, restlessness, and irritability. It is usually managed by either lowering the dose of the SSRI, discontinuing, or changing to a different medication (Luft, Lamy, DelBello, McNamara, & Strawn, 2018). When SSRIs are abruptly stopped or decreased, a collection of symptoms known as discontinuation syndrome can emerge, predominantly characterized by fatigue, dizziness, lightheadedness, drowsiness, and nausea. In adults onset of discontinuation syndrome typically occurs within 1 to 3 days of abrupt cessation or significant dose decrease and can last for 2 weeks. Management typically involves either symptomatic treatment or, if possible, restarting the SSRI with a more gradual taper. While there are limited data in children, evidence in adults indicates that the likelihood of developing a discontinuation syndrome after the abrupt cessation of an SSRI is inversely proportional to the SSRI’s half-life. As such, individuals taking SSRIs with a longer half-life, such as

fluoxetine, are less likely to develop a discontinuation syndrome than those taking other SSRIs such as sertraline and paroxetine. In 2004 the FDA issued a black box warning for SSRIs due to concern for an increase in suicidal thoughts and behavior. This was based on a metaanalysis of 24 short-term clinical trials (up to 4 months) with over 4400 pediatric participants. The rate of suicidal thoughts and behavior was 4% in participants taking SSRIs compared to 2% in participants taking placebo. No suicides were completed in this analysis (FDA, 2018). The FDA recommends: “All patients being treated with antidepressants for any indication should be monitored appropriately and observed closely for clinical worsening, suicidality, and unusual changes in behavior, especially during the initial few months of a course of drug therapy, or at times of dose changes, either increases or decreases” (Eli Lilly, 2017). Another potentially serious adverse effect is serotonin syndrome, which is classically characterized by a triad of mental status changes, autonomic hyperactivity, and neuromuscular abnormalities. Its presentation is variable, and early symptoms may be overlooked. Mild cases of serotonin syndrome can present with tachycardia, diaphoresis, and mydriasis. In moderate cases patients’ additional symptoms may include hypertension and hyperthermia. More severe cases can be associated with delirium, hypertonicity, and shock. Serotonin

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syndrome is caused by excess serotonin. In the context of SSRIs and similar medications serotonin syndrome can be caused by inadvertent or intentional administration of either multiple serotonergic medications or a single serotonergic medication at a high dose. Additionally, serotonin syndrome can be caused by a combination of a serotonergic drug such as an SSRI and a drug that inhibits CYP2D6 metabolism. As such, clinicians must remain cognizant of all a patient’s prescriptions and over-the-counter medications. Examples of medications used in mood and anxiety disorders whose combinations can precipitate serotonin syndrome include SSRIs, tricyclic antidepressants (TCAs), and monoamine oxidase inhibitors. Other medications that can precipitate serotonin syndrome include opiate analgesics, antibiotics, and antiemetics. Serotonin syndrome is a clinical diagnosis. Mild cases are managed supportively, with more severe cases requiring inpatient care and the administration of serotonin antagonists (Boyer & Shannon, 2005).

Approved Indications Some SSRIs have received approval through the FDA for the treatment of MDD and obsessive-compulsive disorder (OCD) in childhood (see Table 99.3).

Off-Label Uses Despite lacking FDA approval there is evidence to support the use of most SSRIs in the treatment of MDD and OCD, as well as the use of SSRIs in other anxiety and mood disorders. Examples of off-label use of SSRIs include fluvoxamine for the use of generalized anxiety disorder and fluoxetine for migraines. Additionally, there are small, randomized controlled trials favoring the use of fluoxetine and fluvoxamine for repetitive behaviors in ASD.

Dosing After an informed discussion of benefits, side effects, and alternatives, dosing of an SSRI should start at the lowest dose possible. For young children and those with developmental disorders, a starting dose below the dose given in Table 99.3 may be recommended. Dose increases should be slow, with increases occurring every 2 to 3 weeks along with close monitoring of effectiveness and adverse effects. Some patience is warranted when treating with SSRIs, as the full therapeutic effect can often take 12 weeks to emerge.

Monitoring Laboratory monitoring for SSRIs is generally not warranted. Symptom checklists should be conducted at follow-up visits, as well as questions regarding suicidal ideation, particularly during medication initiation and dose increases.

Interactions SSRIs undergo hepatic metabolism largely via the CYP450 isoenzymes. Half-lives for SSRIs can vary considerably. The half-lives of fluvoxamine and paroxetine range from 15 to 20 hours, whereas sertraline has a half-life of approximately 25 hours. Escitalopram and citalopram’s half-lives range from

32 to 35 hours. Fluoxetine has the longest half-life of the SSRIs at approximately 72 hours. Additionally, fluoxetine and sertraline produce active metabolites, which can extend their functional half-lives. Fluoxetine produces norfluoxetine, which has an additional half-life of 7 to 14 days, whereas sertraline produces N-desmethylsertarline, which has a half-life of 2 to 3 days (Schatzberg & DeBattista, 2019). Many SSRIs, particularly fluoxetine, are simultaneously substrates and inhibitors of the CYP2D6 enzyme. Thus concentrations of other medications that utilize CYP2D6 for metabolism may be increased with concomitant administration of an SSRI. Examples of medications that utilize CYP2D6 include risperidone, TCA, oxycodone, and clonidine (Mayo Clinical Labs, 2014).

Clinical Pearls Set expectations so that youth and their families are prepared for the extended time SSRIs may take to reach clinical efficacy. Prepare families for the black box warning of suicidality so that they don’t first learn of it from the package insert. Typically dosed once daily, move the dose to bedtime if sedation occurs, or to the morning if insomnia occurs.

SEROTONIN-NOREPINEPHRINE REUPTAKE INHIBITORS Mechanism of Action Serotonin-norepinephrine reuptake inhibitors (SNRIs) are a class of medications that, like SSRIs, are often used in the treatment of anxiety and mood disorders. Examples of these medications are included in Table 99.3. SNRIs act by inhibiting the reuptake of both serotonin and norepinephrine, increasing the level of these neurotransmitters at the synapse. The degree of norepinephrine transporter inhibition varies between different SNRIs, with duloxetine demonstrating strong inhibition effects and venlafaxine exhibiting comparably mild inhibitory effects (Nelson & Baker, 2019).

Efficacy Multiple metaanalyses have demonstrated the effectiveness of SNRIs in the treatment of pediatric anxiety. A 2017 metaanalysis found that SNRIs are effective in pediatric depressive and anxiety disorders, though with a smaller effect size than SSRIs (Locher et al., 2017).

Side Effects Common side effects from SNRIs are similar to those from SSRIs, including gastrointestinal symptoms. Additionally, use of SNRIs may lead to increases in blood pressure and heart rate, likely due to their effects on norepinephrine (Nelson & Baker, 2019). Most increases are modest, ranging to 2 to 7 mmHg and 1 to 4 beats per minute. Hypertension due to SNRIs often resolves by decreasing the dose. When prescribing SNRIs, blood pressure and heart rate should be obtained before initiation and monitored at subsequent

CHAPTER 99  Psychopharmacology

follow-up visits. Liver toxicity, defined as elevations in amino transaminases, has been seen with duloxetine. As with SSRIs, there is a risk of serotonin syndrome when SNRIs are administered concomitantly or within close temporal proximity to other serotonergic drugs. SNRIs can also precipitate a discontinuation syndrome similar to that seen with SSRIs if the dose is quickly reduced or discontinued.

Approved Indications Currently, only duloxetine has FDA approval for pediatric use in the treatment of generalized anxiety disorder in ages 7 to 17 years.

Off-Label Uses Off-label uses of SNRIs that have been described in the literature include anxiety disorders, depressive disorders, chronic pain syndromes, and headaches (Urits et al., 2019). The evidence for some of these indications in the pediatric population is sparse.

Dosing As with SSRIs, prescribing SNRIs in pediatrics should start with a discussion of expected benefits, potential side effects, and alternative interventions. Dosing, particularly in children with developmental disorders, should begin at the lowest dose, with slow incremental increases.

Monitoring No laboratory monitoring is indicated for SNRIs, though blood pressure should be monitored. Additionally, children on duloxetine should be monitored for clinical signs of liver toxicity.

Interactions Of the commonly used SNRIs, only duloxetine is a potent inhibitor of CYP450 isoenzymes. Just as with SSRIs that are inhibitors of CYP450, concentrations of other medications that utilize CYP450 for metabolism, such as risperidone, TCA, oxycodone, and clonidine, may be increased with concomitant administration of duloxetine. Half-lives of SNRIs are similar and range from 9 to 12 hours (Mayo Clinical Labs, 2014).

TRICYCLIC ANTIDEPRESSANTS Tricyclic antidepressants (TCAs) work by inhibiting the reuptake of norepinephrine and serotonin, though they also exhibit anticholinergic and antihistamine activity. Examples of these medications include amitriptyline, imipramine, and desipramine. Prior to the widespread use of SSRIs, TCAs were commonly used for the treatment of depressive and anxiety disorders. The side effect profile of TCAs, particularly compared with SSRIs, have limited their current use in pediatrics. Serious side effects of TCAs include prolonged QT interval, decreased seizure threshold, sedation from antihistamine activity, and confusion or delirium due to anticholinergic

965

activity. Additionally, overdoses of TCAs can be fatal. Given this side effect profile, clinicians prescribing TCAs in children should be aware of any relevant cardiac or seizure history and should consider alternative medication options if warranted. There is some evidence supporting the use of TCAs such as imipramine in the treatment of nocturnal enuresis (see Table 99.3), with results suggesting similar efficacy to desmopressin (Caldwell, Sureshkumar, & Wong, 2016).

BUPROPION Bupropion is an aminoketone antidepressant, structurally different from SSRIs, SNRIs, and TCAs. It is occasionally used as an off-label treatment of MDD and ADHD, particularly when first-line medications for these disorders, such as SSRIs and stimulants, are ineffective (see Table 99.3). In its sustained release formulation (Zyban), bupropion is approved for smoking cessation treatment in adults. Efficacy at treating ADHD is less than that of stimulants and atomoxetine (Stuhec, Munda, Svab, & Locatelli, 2015). Bupropion acts by inhibiting the presynaptic reuptake of dopamine and norepinephrine. Side effects of bupropion include hypertension, weight loss, and lowering of the seizure threshold. As such, bupropion is contraindicated in individuals with epilepsy, anorexia nervosa, or bulimia and should be used cautiously in individuals with cardiovascular conditions (GlaxoSmithKline, 2017).

Clinical Pearls Given the efficacy and tolerability of SSRIs, other medication classes are used far less often for anxiety and depression and related symptoms in children and adolescents. However, an alternative medication may be ideal for select patients who either do not respond to or tolerate SSRIs. A working knowledge of SNRIs and bupropion expands the range of therapeutic interventions accessible to affected youth.

VIGNETTE 3 Violet is a 15-year-old with ASD and intellectual disability, moderate in severity. She functions at a 5-year-old level. A generally happy youngster, Violet has had considerable mood swings for the past 3 years. She becomes aggressive and self-injurious daily. Her family and school provide the maximum of behavioral therapy they can access, but her behavior can be unsafe to herself and to others.

ANTIEPILEPTICS Mechanism of Action Many brain targets have been proposed for mood stabilizers. The underlying pathology of bipolar disorder remains poorly understood but is thought to reflect an imbalance of neurotransmission, with excess dopamine and glutamate transmission but reduced cholinergic muscarinic transmission. Valproate increases gamma-aminobutyric acid (GABA) concentration in the brain. Carbamazepine inhibits

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high-frequency firing of sodium channels to treat seizures but also serves as an antagonist of adenosine receptors, involved in modulation of neurotransmitter release (Weisler, 2006). Topiramate has many mechanisms that potentially explain its mood-stabilizing capacity in adults: it blocks sodium and calcium channels, inhibits the excitatory glutamate pathway, and enhances the inhibitory effect of GABA. Lamotrigine also blocks sodium channels, inhibits calcium channels, and inhibits glutamate release (Findling, 2015).

Efficacy Valproate and carbamazepine demonstrate effectiveness in treating mania and mixed episodes of bipolar disorder in children and adolescents. Limited data support the efficacy of lamotrigine in treating older adolescents with bipolar disorder (Findling, 2015).

Side Effects Side effects of valproate include weight gain, nausea, sedation, and tremor. Less common but significant are pancreatitis, thrombocytopenia, alopecia, and hepatic failure. Female patients should be monitored for signs of polycystic ovary syndrome. Side effects of topiramate are anorexia, weight loss, and sedation. Carbamazepine can cause hematologic side effects such as agranulocytosis and aplastic anemia, as well as additional side effects of hepatotoxicity, hyponatremia, and dermatologic reactions. Lamotrigine can cause dermatologic reactions such as Stevens-Johnson syndrome and toxic epidermal necrolysis, for which children under 16 years are at greater risk than are adults.

Approved Indications Valproate is approved as monotherapy and adjunctive therapy for complex partial seizures in children as young as 10 years. Topiramate is used as monotherapy for partialonset or primary generalized tonic-clonic seizures in children as young as 2 years of age and as adjunctive therapy for partial-onset seizures or primary generalized tonicclonic seizures associated with Lennox-Gastaut syndrome in children as young as 2 years. Carbamazepine is used as monotherapy for partial, generalized, and tonic-clonic seizures in children, including those under 6 years of age. Lamotrigine is used as adjunctive therapy for children aged 2 and older with partial-onset seizures, primary generalized tonic-clonic seizures, and generalized seizures due to Lennox-Gastaut syndrome. It is also used as monotherapy in patients 16 and older with partial-onset seizures converting from other specific treatments.

Off-Label Uses Antiepileptics are sometimes used off-label in the treatment of bipolar disorder. Valproate, for example, along with lithium and atypical antipsychotics, remains a primary treatment for early-onset bipolar disorder. Best outcomes result from combination treatments, such as an antiepileptic or lithium plus an antipsychotic (Pavuluri et al., 2004). As is the case for valproate, carbamazepine data come mostly

from adult populations; it may be effective for juveniles insufficiently responsive to lithium. Lamotrigine, approved for acute mania and maintenance treatment of bipolar disorder in adults, is also sometimes used for juvenile bipolar disorder (Pavuluri et al., 2009). It is a first-line treatment for depression in adults with bipolar disorder and may also be useful in the pediatric population, both for bipolar and unipolar depression. Neither gabapentin nor topiramate has been found to be helpful in treating adult bipolar disorder. Topiramate is sometimes used to counteract weight gain from psychoactive medications, though data supporting its efficacy are lacking. Several initial studies demonstrate potential utility of antiepileptic medication to treat problematic symptoms associated with ASD. For example, topiramate may reduce irritability, stereotypic behavior, and hyperactivity when used as an adjunct to risperidone (Rezaei et al., 2010). Valproate may also reduce irritability in children and adolescents with ASD. Atypical antipsychotics are used more commonly, however, due to the better risk/benefit ratio, ease of management (i.e., no need to check for therapeutic levels), and more extensive evidence supporting efficacy.

Dosing Dosing of these medications generally follows guidelines for their use as antiepileptics.

Monitoring Before any antiepileptic is started, females of child-bearing age should undergo pregnancy testing with advice about potential teratogenic effects of these medications. Valproate and carbamazepine serum levels are monitored.

Interactions Carbamazepine is metabolized in the p450 isoenzyme system (CYP3A4) and therefore interacts with many similarly metabolized medications, including oral contraceptives. Likewise, topiramate is a mild CYP2C19 inhibitor and CYP3A4 inducer. Valproate is a weak inhibitor of CYP2C9 enzyme activity and may interact with other medications that interact with CYP2C9 substrates (Gunes et al., 2007). Strong or moderate inducers of CYP3A4 may enhance metabolism of lamotrigine. Clinicians should be cautious about coadministration of lamotrigine with valproate, which may increase risk of severe and possibly life-threatening rash.

Clinical Pearls Clinicians should monitor behavioral changes in children and teens with developmental disabilities when first treated for seizure disorders. Antiepileptics often interact with other psychoactive medications.

ATYPICAL ANTIPSYCHOTICS Use of antipsychotic medications began in the 1950s. The addition of atypical antipsychotics with similar efficacy yet lowered side effect risk occurred in the 1990s. This group of

CHAPTER 99  Psychopharmacology

967

TABLE 99.4  Side Effects of Commonly Used Atypical Antipsychotics Side effects

Aripiprazole

Clozapine

Olanzapine

Quetiapine

Risperidone

Ziprasidone

Anticholinergic

0

+++

++

0/+

0

0

EPS

++

0

0/+

0

+

0

Neutropenia

0/+

++

0/+

0/+

0/+

+

Diabetes mellitus

0/+

+++

+++

++

+

0/+

↑ Lipid

0/+

+++

+++

++

+

0/+

↑ Prolactin

0/-

0

+

0

++

+

↑ QTc

0/+

+

0/+

+

+

+++

Sedation

0/+

+++

++

+++

+

0/+

↑ Weight

+

+++

+++

++

++

+

EPS, Extrapyramidal side effects. Range reduced (−) → most increased (+++)

TABLE 99.5  Prescribing Guide for Commonly Used Atypical Antipsychotics Generic Name

Aripiprazole

Olanzapine

Quetiapine

Risperidone

Ziprasidone

Brand name

Abilify

Zyprexa

Seroquel

Risperdal

Geodon

Starting dose mg/day

2 mg

2.5 mg

50 mg

0.25 mg

20 mg divided BID

Max dose mg/day

20–30 mg

10 mg

800 mg

6 mg

160 mg divided BID

Interactions with cytochrome P450 system

CYP2D6 CYP3A4

CYP2D6 CYP1A4

CYP3A4

CYP2D6

CYP3A4

Indication for irritability in autism spectrum disorder

X

X

No pediatric indications

Indication for pediatric or adolescent bipolar

X

X

X

X

Indication for pediatric or adolescent schizophrenia

X

X

X

X

Indication for Tourette disorder

X

Lowest age of approval in years

6

9

10

5

medications is therefore also referred to as second-generation antipsychotics. Clozapine was the first available atypical antipsychotic but has no pediatric indications and a particularly high risk of side effects; it is rarely used in children, limited to treatment-resistant conditions. Several atypical antipsychotics are currently available in the United States and Canada. Some of the more commonly used atypical antipsychotics are shown in Tables 99.4 and 99.5. More recently developed atypical antipsychotics include paliperidone, asenapine, iloperidone, and cariprazine. A growing body of literature supports the efficacy of these more recently developed antipsychotics, but the discussion in this chapter will focus on those that have more research and clinical experience for treatment of children and adolescents. Several additional atypical antipsychotics are used around the world.

Mechanism of Action The method in which atypical antipsychotic medications address a range of developmental and mental health

symptoms is not fully understood. All atypical antipsychotics block dopamine (D2) receptors and serotonin (5HT2A) receptors while agonizing 5HT1A receptors.

Efficacy Risperidone reduces irritability, aggression, tantrums, and self-injury associated with ASD. Greater magnitude of effect is observed in those with more severe behaviors at baseline (Levine et al., 2016). Aripiprazole reduces irritability and aggression associated with ASD (Devane et al., 2019). Current research suggests that risperidone and aripiprazole are broadly equivalent in efficacy (DeVane et al., 2019). Further, emerging evidence confirms clinical experience that both medications reduce ADHD symptoms in those with ASD (Lamberti et al., 2016). Risperidone and aripiprazole are both effective in treating acute mania and mixed episodes in youth with bipolar I disorder (Findling et al., 2013). The combination of olanzapine and fluoxetine treats bipolar depression, though weight gain

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and triglycerides should be monitored closely. Quetiapine effectively treats mania in youth with bipolar I but not depression. Ziprasidone may also effectively treat bipolar mania in pediatric patients (Findling et al., 2013). Both positive and negative symptoms of schizophrenia in youth respond to treatment with risperidone. Aripiprazole is generally well tolerated and effective in treating and maintaining youth with schizophrenia (Pagsberg et al., 2017). Studies indicate efficacy of olanzapine and quetiapine as well (Pagsberg et al., 2017). Antipsychotics may be useful for tics (see Chapter 71).

Side Effects The risk of the assorted side effects (discussed later) varies substantially across the different commonly used atypical antipsychotics (see Table 99.4). Younger age tends to increase risk for side effects, while prior exposure to atypical antipsychotics seems somewhat protective. Increased risk of side effects is conferred with polypharmacy. One meta-analysis of children and adolescents with ASD treated with atypical antipsychotics found central nervous system adverse events (increased appetite, sedation, headache) most common, followed by endocrine disorders (weight gain, elevated prolactin) and gastrointestinal disorders (Alfageh et al., 2019) (see Table 99.4). Adults are at increased risk of type 2 diabetes mellitus with atypical antipsychotic use, as are youth. Adverse changes in glucose metabolism are most strongly linked to olanzapine. Overall, the risk of diabetes is increased two to three times with antipsychotic treatment (Galling et al., 2016). Prolactin is increased transiently with risperidone treatment, which can lead to galactorrhea and gynecomastia, though it rarely results in discontinuation (McKinney & Renk, 2011). Risk of elevated prolactin varies across antipsychotics (see Table 99.4). Extrapyramidal side effects (EPSs) are drug-induced movement disorders caused by dopamine-receptor blockers. The spectrum of EPS includes relatively acute symptoms of dystonia, akathisia, and parkinsonism (tremor, rigidity, slowed truncal/extremity motor function), along with more chronic tardive dyskinesia (see Chapter 71) and tardive akathisia. Withdrawal dyskinesia can occur with abrupt cessation of medication. Olanzapine results in greater weight gain compared to other atypical antipsychotics. Enuresis is reported for youth taking risperidone, in addition to increased appetite and weight gain. Aripiprazole is associated with weight gain, somnolence, and vomiting. Weight gain is most likely in younger patients with higher baseline weight Z score. Sedation was more likely in those who are antipsychotic naïve (Mankoski et al., 2013). Neuroleptic malignant syndrome (NMS) is rare but potentially fatal (McKinney & Renk, 2011). Symptoms start with mental status change, followed by muscle rigidity, dystonia, fever, elevated creatinine phosphokinase and white blood cells, increased respiratory rate and heart rate, hyperthermia, and profuse diaphoresis. When NMS is suspected, the causative agent should be discontinued, with referral to a hospital for supportive care and close monitoring.

Approved Indications Risperidone and aripiprazole are both FDA approved for the treatment of irritability associated with ASD in children age 5 and over, and 6 and over, respectively (see Table 99.5). Asenapine, aripiprazole, olanzapine, quetiapine, and risperidone are FDA approved as monotherapy treatment for manic or mixed episodes for children and teens with bipolar I disorder, who are 9 to 10 years and older (olanzapine approval starts at 13 years old). Olanzapine and lurasidone are also approved for depressive episodes associated with bipolar I when combined with fluoxetine in children and adolescents as young as 10 years. Quetiapine is approved for acute treatment of manic episodes in youth 10 to 17 years with bipolar 1 disorder, both as monotherapy and adjunct to lithium or valproate. Aripiprazole is also FDA approved for acute and maintenance treatment of manic and mixed episodes in children 10 to 17 years with bipolar disorder. Risperidone is similarly approved for treatment of bipolar mania in children and adolescents 10 to 17 years old. Aripiprazole, olanzapine, lurasidone, quetiapine, and risperidone are approved for treatment of schizophrenia for 13- to 17-year-olds, and paliperidone is approved for children 12 years and over. Aripiprazole is approved for treatment of Tourette disorder in children and teens 6 to 18 years.

Off-Label Uses Atypical antipsychotics along with valproate and lithium remain a primary treatment for early-onset bipolar disorder, although only olanzapine is FDA approved for treatment of this disorder. Best outcomes result from combination treatments: antiepileptic or lithium + antipsychotic (Pavuluri et al., 2004). Clozapine may be beneficial, but its side effect profile limits its use (Thomas et al., 2011). Oppositional defiant disorder and conduct disorder are among the most common diagnoses linked to antipsychotic use in children and adolescents. Evidence supports variable efficacy of risperidone, possibly by reducing anxiety, and with small to medium effect sizes (Jahangard et al., 2017).

Dosing For treating bipolar disorder, aripiprazole should be started at 2 mg/day for 2 days, then titrated to 5 mg/day for 2 days, and then increased to a target dose 10 mg/day. Further increases in dose may be made in 5-mg increments on a weekly basis to a maximum 30 mg. With risperidone, dosing should start at 0.5 mg/day, with an increase of 0.5 to 1 mg at an interval of greater than 2 weeks, to a target dose 0.5 to 6 mg/day. When treating behavioral symptoms associated with ASD, aripiprazole should be started at 2 mg/day, then titrated weekly by up to 5 mg/week, with a target dose of 10 to 15 mg/ day (see Table 99.5). With risperidone, dosing should start at 0.25 mg/day for children under 20 kg and 0.5 mg/day for 20 kg and above. Increase by 0.25 to 0.5 mg every 2 weeks or more, to a target dose of 0.5 to 3 mg/day. With both these medications, clinicians often start younger children at lower doses and increase more slowly.

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When treating Tourette disorder, aripiprazole is dosed at 2 mg/day, titrating to 5 mg/day, with a target dose of 10 mg/ day by day 8. The dose can be increased up to 20 mg/day.

Monitoring Before starting any atypical antipsychotic medication, review personal and family history of obesity, diabetes, elevated lipids, high blood pressure, or cardiovascular disease; document baseline weight, height, body mass index, blood pressure, lipid profile, and fasting glucose or hemoglobin A1c. Weight should be checked at 4, 8, and 12 weeks after starting and then every 3 months. Baseline ECG and prolactin are often advised, given risks of QTc changes and hyperprolactinemia with some antipsychotics. However, conventional doses of risperidone do not appear to lengthen the QTc interval in children and teens (Vo et al., 2016). EPS should be monitored regularly (e.g., using the Abnormal Involuntary Movement Scale).

Interactions Atypical antipsychotics have numerous potential interactions due to metabolism via the cytochrome p450 system (see Table 99.5).

Clinical Pearls Starting at a low dose and slowly increasing the dose is particularly important when using atypical antipsychotics, as most side effects are dose dependent. Updating a patient’s medication list at each visit is particularly important, given the many medication interactions possible with these medications.

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Side Effects Lithium is generally well tolerated. Early indications of lithium toxicity include ataxia, dysarthria, and reduced motor coordination. Levels well above the therapeutic window can result in seizures, coma, and death. Dehydration should be avoided as it can lead to lithium toxicity. Mild to moderate side effects include headache and nausea/vomiting, sedation, diarrhea, polyuria and polydipsia, acne, and weight gain. Long-term treatment can cause nephrogenic diabetes insipidus (Thomas et al., 2011). Approved Indications Lithium is approved to treat acute mania and mixed episodes, and for maintenance therapy, for children as young as 7 years of age with bipolar disorder. Off-Label Uses Lithium is sometimes used in severely depressed and highrisk teens inadequately treated with antidepressants or with considerable suicide risk (West-Ward Pharmaceuticals, 2018). Dosing Lithium dosing should start at 20 mg/kg/day or 900 mg/day divided into two to three daily doses, whichever is lower. It should be increased toward therapeutic range according to response and side effects. Weight-based dosing is another option (30 kg start at 300 mg three times daily). Increases should occur by 300 mg every 4 to 5 days until therapeutic response is achieved or blood level reaches 1.2 mEq/L.

Mechanism of Action The method through which lithium exerts its moodstabilizing effects is not fully understood. Both neuroprotective and neuroproliferative effects have been demonstrated, along with modulation of neurotransmitters (including dopamine, glutamate, and GABA).

Monitoring Baseline labs include serum electrolytes, renal function, thyroid function, and blood counts. Renal function should be reassessed every 2 to 3 months in the first 6 months of treatment and then every 6 months. Thyroid function should be monitored every 6 months. Baseline pregnancy test in females should be confirmed before lithium is initiated due to potential cardiac malformations such as Ebstein anomaly. Baseline ECG is also recommended, given the risk for lithium-induced cardiac side effects in those with preexisting cardiac disease (Thomas et al., 2011). Lithium levels should be monitored, with a target blood level of 0.6 to 1.2 mEq/L. After a therapeutic level is achieved on a stable dose for 3 months, levels should continue to be checked every 3 months (Thomas et al., 2011).

Efficacy Lithium is not well studied in children or teens, but it is used to treat bipolar disorder (Duffy & Grof, 2018). Most evidence relates to the manic and mixed phases of illness, most commonly observed in affected youth. Higher response rates and lower relapse rates may result when combined with antipsychotic medication (Stepanova & Findling, 2017). Lithium is considered the mainstay of bipolar maintenance in adults.

Interactions Lithium is not metabolized, but its narrow therapeutic range requires careful consideration of any coadministered medications that might impact its serum level (e.g., thiazide diuretics may increase the concentration of lithium, while osmotic diuretics can decrease its concentration). Most relevant for children and adolescents is the interaction between lithium and nonsteroidal antiinflammatory medication, which can

MISCELLANEOUS MEDICATIONS Numerous medications have been purported to treat symptoms associated with child and adolescent developmental and mental health disorders. Selected medications are reviewed briefly in this section.

Lithium

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decrease renal clearance and potentiate toxicity by increasing lithium concentration (Finley, 2016).

Amantadine and Memantine Mechanism of Action Both amantadine and memantine are thought to impact neurologic symptoms via their roles as NMDA receptor antagonists, thus impacting glutamatergic neurotransmission. Efficacy Research on the use of amantadine and memantine to impact the behavior of children and teens with ASD is variable but suggests they may have a role as augmentation to risperidone (King et al., 2001). Side Effects Both amantadine and memantine are well tolerated with mild side effect profiles, although amantadine may cause sedation (King et al., 2001). Approved Indications Amantadine is approved as prophylaxis and treatment for influenza A virus. Memantine is approved to treat mild to moderate dementia of Alzheimer type. Off-Label Uses In the pediatric population amantadine has been used to treat fatigue associated with multiple sclerosis as well as traumatic brain injury. It is also used as adjunctive treatment for aggressive behavior in hospitalized children and teens (McGrane, Loveland, & Zaluski, 2016). Dosing Memantine dosing is weight based, ranging from 3 mg/day for those under 20 kg to 15 to 20 mg/day for those over 60 kg. Amantadine is dosed differently across studies (e.g., in one study dosing was 100 mg/day for those 30 kg, divided into two doses). A second study dosed 5 mg/kg/day twice per day (King et al., 2001). Monitoring No laboratory monitoring is indicated for these medications. Interactions Both medications can have anticholinergic-like side effects, which can be increased by other medications with anticholinergic properties. Clinical Pearls Given the lack of robust evidence supporting their use, neither amantadine nor memantine is a mainstream choice to treat children and teens with ASD and/or aggression. However, their benign side effect profiles make them appealing adjuncts to treatment.

N-Acetylcysteine Mechanism of Action The mechanism of action of N-acetylcysteine (NAC) is not fully understood and may be related to its antiglutaminergic and antioxidant properties.

Efficacy Data on the efficacy of NAC is limited and mixed, with some research indicating improvement of irritability, hyperactivity, and compliance of children 4 to 12 years with ASD. NAC is used to augment treatment with risperidone (Ghanizadeh & Moghimi-Sarani, 2013). Side Effects NAC is well tolerated with rare severe side effects. Approved Indications NAC is approved as an antidote for acetaminophen overdose to prevent or minimize hepatic injury. Off-Label Uses Use of NAC to address behavior of children with ASD is off-label. Dosing In studies of NAC given to children with ASD doses vary. In one participants were given 1200 mg/day divided into two doses (Ghanizadeh & Moghimi-Sarani, 2013). In a second participants under 20 kg were given 200 mg/dose three times per day, and those over 20 kg received 300 mg three times per day (Nikoo, Radnia, Farokhnia, Mohammadi, & Akhondzadeh, 2015). Monitoring No laboratory monitoring is indicated. Clinical Pearls As the efficacy of NAC is not well proven, its use is limited to occasions when evidence-based interventions fail or have intolerable side effects.

Naltrexone Mechanism of Action An opioid antagonist, naltrexone is posited to address symptoms associated with ASD via its role in blocking the action of naturally occurring opioid peptides and brain serotonin (Roy, Roy, Deb, Unwin, & Roy, 2015). Efficacy There is limited and mixed data regarding use of naltrexone for youth with ASD. A review of 10 studies, mostly using a randomized controlled crossover design, including 155 children with ASD, determined that 77% showed improvement

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in irritability and hyperactivity with naltrexone treatment (Roy et al., 2015). It has also been used to treat self-injurious behavior.

Side Effects Naltrexone is generally well tolerated with adverse effects that include weight loss and sedation. Approved Indications Indications are for treatment of alcohol dependence and for blockade of effects of exogenously administered opioids. Off-Label Uses Naltrexone has been used for hyperactivity, irritability, and self-injury associated with ASD or intellectual disability. Dosing Previous studies of naltrexone for youth with ASD generally include doses ranging from 0.5 to 1.5 mg/kg. Monitoring No laboratory monitoring is indicated. Interactions Naltrexone may interact with other opioid-containing medications, such as cough and cold remedies, antidiarrhea medication, and opioid analgesics. Clinical Pearls Like amantadine and memantine, the mild side effect profile of naltrexone makes it an appealing option for treatmentresistant children and adolescents, despite the lack of robust evidence supporting its use.

POLYPHARMACY Polypharmacy is often used in children with developmental disorders, with one study estimating that approximately 35% of children with ASD were taking two or more psychotropic medications. Polypharmacy appears to be more common in older children and those with multiple developmental and behavioral disorders (Spencer et al., 2013). Given the limited data on the safety and efficacy of polypharmacy in children with developmental and behavioral disorders, additional attention must be taken in these scenarios to ensure a child’s medication regimen balances meeting their behavioral needs while minimizing side effects and adverse medication interactions. A review of all a child’s medications should be performed at every visit to ensure accuracy of the medication list, assess for the potential for medication interactions, and determine the necessity of each medication in addressing its specific target symptoms.

CONCLUSION Use of pharmacotherapy is often a helpful treatment component for impairing symptoms of many developmental and

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behavioral health conditions in children and adolescents. Medication can be appropriate and impactful across a broad age span and for a spectrum of symptoms, as illustrated in the vignettes above. However, every medication brings a set of risks carefully balanced with benefits. Safe and optimal care requires clinicians to update themselves regularly regarding this frequently expanding field.

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CHAPTER 99  Psychopharmacology Nikoo, M., Radnia, H., Farokhnia, M., Mohammadi, M. R., & Akhondzadeh, S. (2015). N-acetylcysteine as an adjunctive therapy to risperidone for treatment of irritability in autism: A randomized, double-blind, placebo-controlled clinical trial of efficacy and safety. Clinical Neuropharmacology, 38(1), 11–17. Osland, S. T., Steeves, T. D., & Pringsheim, T. (2018). Pharmacological treatment for attention deficit hyperactivity disorder (ADHD) in children with comorbid tic disorders. Cochrane Database of Systematic Reviews, 26, 6. Pagsberg, A. K., Jeppesen, P., Klauber, D. G., Jensen, K. G., Rudå, D., Stentebjerg-Olesen, M., … Fink-Jensen, A. (2017). Quetiapine extended release versus aripiprazole in children and adolescents with first-episode psychosis: The multicentre, double-blind, randomised tolerability and efficacy of antipsychotics (TEA) trial. The Lancet Psychiatry, 4(8), 605–618. Pavuluri, M. N., Henry, D. B., Carbray, J. A., Sampson, G., Naylor, M. W., & Janicak, P. G. (2004). Open-label prospective trial of risperidone in combination with lithium or divalproex sodium in pediatric mania. Journal of Affective Disorders, 82(1), S103–S111. Pavuluri, M. N., Henry, D. B., Moss, M., Mohammed, T., Carbray, J. A., & Sweeney, J. A. (2009). Effectiveness of lamotrigine in maintaining symptom control in pediatric bipolar disorder. Journal of Child and Adolescent Psychopharmacology, 19(1), 75–82. Piacentini, J., Bennett, S., Compton, S. N., Kendall, P. C., Birmaher, B., Albano, A. M., ... Walkup, J. (2014). 24- and 36-week outcomes for the Child/Adolescent Anxiety Multimodal Study (CAMS). Journal of the American Academy of Child and Adolescent Psychiatry, 53(3), 297–310. Politte, L. C., Scahill, L., Figueroa, J., McCracken, J. T., King, B., & McDougle, C. J. (2018). A randomized, placebo-controlled trial of extended-release guanfacine in children with autism spectrum disorder and ADHD symptoms: An analysis of secondary outcome measures. Neuropsychopharmacology, 43(8), 1772–1778. Rezaei, V., Mohammadi, M. R., Ghanizadeh, A., Sahraian, A., Tabrizi, M., Rezazadeh, S. A., & Akhondzadeh, S. (2010). Double-blind, placebo-controlled trial of risperidone plus topiramate in children with autistic disorder. Progress in NeuroPsychopharmacology & Biological Psychiatry, 34(7), 1269–1272. Roy, A., Roy, M., Deb, S., Unwin, G., & Roy, A. (2015). Are opioid antagonists effective in attenuating the core symptoms of autism spectrum conditions in children: A systematic review. Journal of Intellectual Disability Research: JIDR, 59(4), 293–306. Schatzberg, A., & DeBattista, C. (2019). Antidepressants: Schatzberg’s manual of clinical psychopharmacology (9th ed.). American Psychiatric Association Publishing. https://doi-org. ezp.slu.edu/10.1176/appi.books.9781615372997.AS03 Schoretsanitis, G., de Leon, J., Eap, C. B., Kane, J. M., & Paulzen, M. (2019). Clinically significant drug-drug interactions with agents for attention-deficit/hyperactivity disorder. CNS Drugs, 33(12), 1201–1222. Scott, N. G., Ripperger-Suhler, J., Rajab, M. H., & Kjar, D. (2010). Factors associated with atomoxetine efficacy for treatment of attention-deficit/hyperactivity disorder in

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children and adolescents. Journal of Child and Adolescent Psychopharmacology, 20(3), 197–203. Spencer, D., Marshall, J., Post, B., Kulakodlu, M., Newschaffer, C., Dennen, T., ... Jain, A. (2013). Psychotropic medication use and polypharmacy in children with autism spectrum disorders. Pediatrics, 132(5), 833–840. Stepanova, E., & Findling, R. L. (2017). Psychopharmacology of bipolar disorders in children and adolescents. Pediatric Clinics of North America, 64(6), 1209–1222. Stuhec, M., Munda, B., Svab, V., & Locatelli, I. (2015). Comparative efficacy and acceptability of atomoxetine, lisdexamfetamine, bupropion and methylphenidate in treatment of attention deficit hyperactivity disorder in children and adolescents: A metaanalysis with focus on bupropion. Journal of Affective Disorders, 1(178), 149–159. Thomas, T., Stansifer, L., & Findling, R. L. (2011). Psychopharmacology of pediatric bipolar disorders in children and adolescents. Pediatric Clinics of North America, 58(1). 173–xii. Trenque, T., Herlem, E., Abou Taam, M., & Drame, M. (2014). Methylphenidate off-label use and safety. SpringerPlus, 3, 286. Urits, I., Peck, J., Orhurhu, M. S., Wolf, J., Patel, R., Orhurhu, V., ... Viswanath, O. (2019). Off-label antidepressant use for treatment and management of chronic pain: Evolving understanding and comprehensive review. Current Pain and Headache Reports, 23(9), 66. Vo, L. C., Snyder, C., McCracken, C., McDougle, C. J., McCracken, J. T., Aman, M. G., … Scahill, L. (2016). No apparent cardiac conduction effects of acute treatment with risperidone in children with autism spectrum disorder. Journal of Child and Adolescent Psychopharmacology, 26(10), 900–908. Waxmonsky, J. G., Waschbusch, D. A., Pelham, W. E., DraganacCardona, L., Rotella, B., & Ryan, L. (2010). Effects of atomoxetine with and without behavior therapy on the school and home functioning of children with attention-deficit/ hyperactivity disorder. The Journal of Clinical Psychiatry, 71(11), 1535–1551. Weisler, R. H. (2006). Carbamazepine extended-release capsules in bipolar disorder. Neuropsychiatric Disease and Treatment, 2(1), 3–11. West-Ward Pharmaceuticals. (2018). Lithium [package insert]. US Food and Drug Administration. https://www.accessdata.fda. gov/drugsatfda_docs/label/2018/017812s033,018421s032,01855 8s027lbl.pdf Yang, R., Li, R., Gao, W., & Zhao, Z. (2017). Tic symptoms induced by atomoxetine in treatment of ADHD: A case report and literature review. Journal of Developmental and Behavioral Pediatrics: JDBP, 38(2), 151–154.

100 Hypnosis, Biofeedback, and Meditation Howard Hall, Fatima Malik, and Suzanne Rusnak

For additional material related to the content of this chapter, please see Chapters 64, 91, and 98.

VIGNETTE 1 Robert, a 3-year-old, falls down some stairs splitting his lip and knocking a tooth into his maxillary bone. He is bleeding profusely and screaming with both pain and fright. His parents run to him with fear on their face asking if he is alright. They yell for a neighbor to bring a towel and ice. They comment to each other that they can’t believe how much he is bleeding and stating he is going to need stitches. He is rushed to the emergency room where they are told their child will need about 10 stitches.

INTRODUCTION Self-regulation refers to the process of gaining awareness of the mind-body connection, in order for the individual to develop some measure of control over selected psychological or physiologic processes. Self-regulation empowers the child to learn how to self-manage stress and discomfort (e.g., by controlling autonomic arousal associated with anxietyprovoking situations). Self-regulation or mind-body skill training aims to cultivate empowering emotional states and self-control via self-directed therapeutic affirmations and suggestions. There are a variety of strategies used to teach self-regulation in the health care setting (Table 100.1). These approaches may be a primary treatment in some cases and in others may help manage pain, anxiety, or other symptoms associated with a condition (Table 100.2). In this chapter we will focus on three approaches: self-hypnosis, biofeedback, and meditation. These interventions differ in their approach to teaching self-regulation but also have important similarities. One unifying aspect of almost all forms of therapy is the use of language. To begin this chapter, we will introduce the concepts of therapeutic language and integrative therapeutic breath control. Clinicians who do not teach hypnosis, biofeedback, or meditation can use these approaches to help children manage fear, pain, and anxiety that commonly occur in all health care settings. 974

THERAPEUTIC LANGUAGE Critical to self-regulation interventions is the therapeutic use of language and invitation. Therapeutic conversations are affirmative rather than dismissive, emphasize strengths over weaknesses, and are consistent with the patient’s experiences and background. When working with children, language can highlight that children view the world differently than adults. Children are curious, seeking to understand the world around them. They may be open to suggestions about how to understand the world. The first vignette describes a common occurrence for parents and children, but a parent (who also happened to be trained in hypnosis) provides an instructive case on how one might use therapeutic language as opposed to the more common approach taken by the parents in the vignette. As Robert paused for breath from screaming, his parent told him quickly, simply, sympathetically, and emphatically, “That hurts, awful Robert. That hurts terrible.” Thus Robert knew that his parents understood and agreed with him and his current situation. Then they told Robert, “And it will keep right on hurting” articulating Robert’s own fear and judgment. After he took his next breath, they told him, “And you really wish it would stop hurting.” The following suggestion was offered: “Maybe it will stop hurting in a little while, in just a minute or two.” The parent emphasized that the child’s blood was strong and red and the bleeding and swelling were the “right” response for his body. The need for stitches was discussed in a way to avoid a negative reaction. This was done by stating regretfully that, while he would have to have stitches in his lip, it was doubtful if he would have as many stitches in his lip as he could count. In fact, it looked as if he would not even have 10 stitches, and Robert could count to 20. Regret was expressed he could not have 17 stitches, like one of his friends, but comfort was offered in the statement that he would have more stitches than a couple sibling. In this way Robert was enabled to face the question of stitches without fear or anxiety but with hope of high accomplishment (Erickson, 1958). Learning the therapeutic language of hypnosis equips a clinician to incorporate it in other self-regulation modalities such as biofeedback and meditation, as well as in everyday pediatrics (Sugarman, 2006). For example, if a child has a tic cough (see Chapter 71), it is important for the clinician to

CHAPTER 100  Hypnosis, Biofeedback, and Meditation

TABLE 100.1  Self-Regulation Approaches 1. Mindfulness Meditation

Cultivating of non-judgmental awareness and attention mind through observing inner thoughts, emotions, and sensations

2. Yoga

An ancient science and philosophy of the mind, body, and soul that includes movement, posture, and the breathing techniques

3. Hypnotherapy

An altered state of awareness usually involving relaxation during which the individuals experience high suggestibility

4. Biofeedback

The use of electronic or electromagnetic instruments to measure and feed back physiologic processes, which then can be altered by the individual in the desired direction

5. Positive self-talk

Use of positive self-talk as in cognitive behavioral therapy (see Chapter 98)

6. Progressive muscle relaxation

Alternately tightening and then relaxing specific muscle groups throughout the body

7. Diaphragmatic breathing

Developing an effortless, slow, and deep rhythmic breathing pattern usually in the range of 5–7 breaths/min

8. Self-monitoring

Keep an accurate record of mind, body, and symptom change over time

9. Mind-body education

Explaining in a developmentally appropriate manner how body systems work, to provide a logical understanding of optimal health. In addition, it is important to explore how changes in thinking cause changes in physiologic processes and vice versa

10. Autogenics

Employing self-administered, repetitive suggestions involving sensations of warmth, heaviness, and relaxations throughout the body

Gertz, D. S., & Culbert, T. (2009). Pediatric self-regulation. In Developmental-behavioral pediatrics (pp. 911–922 [table 911]). WB Saunders.

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TABLE 100.2  Applications of

Hypnotherapy, Meditation, and Biofeedback

Applications of Hypnotherapy Habit problems Thumb sucking Biting Hair pulling Enuresis Speech and voice Intractable cough Habitual drug abuse Tics and tremors Behavioral problems

Anger Adjustment disorder Self-regulation Adjustment to counseling

Developmental disorders

Pediatric learning problems Performance and attention problems

Psychophysiologic problems (augmentative treatment)

Asthma Tourette syndrome Irritable bowel syndrome Warts Medical procedures and examinations Seizures

Pain

Acute Chronic (recurrent/constant)

Psychological disorders

Generalized anxiety disorder Social anxiety Performance anxiety Posttraumatic stress disorder Obsessive-compulsive disorder Phobia Insomnia Conversion reactions Depression

Chronic illness (augmentative treatment)

Asthma Cancer Hemophilia Juvenile rheumatoid arthritis Transplant Inflammatory bowel disease

Applications of Meditation Global functioning Emotional regulation Increases compassion for self and others Enhanced attention Improved performance Psychological

Anxiety Depression Stress

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SECTION 10 Interventions, Management, and Treatment of Developmental and Behavioral Conditions

TABLE 100.2  Applications of

Hypnotherapy, Meditation, and Biofeedback—cont’d

Physiologic

Hypertension Immune function Pain

Applications of Biofeedback Acute and chronic pain Pediatric burn patients Rheumatoid arthritis Migraine headaches Tension-type headaches Pain related to cancer Autonomic dysfunction

Hypertension Reynold disease Reflex sympathetic dystrophy

Biobehavioral disorders

Enuresis Encopresis

Movement and posture disorders

Gait training Cerebral palsy Torticollis

Developmental disorders

Attention-deficit/hyperactivity disorder Autism

consider how language may influence the child’s symptoms. If parents focus on the cough or model how the child coughs, the child will often start coughing. Instead, the clinician would focus on the child’s strengths, and not the child’s problems. This is discussed further in the next vignette.

DIAPHRAGMATIC BREATHING VIGNETTE 2 Sarah, an 8-year-old female, presented with a disruptive, harsh, barking cough that was interfering in classroom and social settings. A thorough medical evaluation was negative. At the initial consultation, the therapist let the parents know that they would not talk about the cough habit in front of the child, nor were they permitted to bring up this subject. During the initial visit, the therapist learned that Sarah was keenly interested in sports. The use self-regulation approaches in sports psychology programs was discussed, and Sarah was taught diaphragmatic breathing. The cough was never mentioned, and Sarah never coughed during the visit. As she was walking out of the room, Sarah stopped and asked, “What about my cough?” The therapist answered: “Oh! That’s just a habit.” The parents became plural experts on not focusing on her cough habit and on providing a lot of attention to nonhabit behaviors. Over time Sarah learned biofeedback and hypnosis for sports, and the cough became rare.

Similar to the use of therapeutic language, breath control/ focus is used in almost all the self-regulation techniques and in everyday clinical settings. Diaphragmatic breathing technique is known as belly breathing because fully contracting

the diaphragm causes the abdomen to expand while the chest remains relatively still. It can be easily taught and has been shown to help individuals relax, lower heart rate and blood pressure, decrease pain, and improve athletic performance (Giardino et al., 2004; Lin et al., 2012; Siepmann et al., 2008). Younger children or those who find it difficult can focus on blowing bubbles or balloons with some of the same effects. This approach can be introduced by focusing on extending the out-breathing, which triggers the natural response of in-breath. The child is asked to allow the breath to come in through the nose and to place one hand on the abdomen and purse the lips for an extended out-breath. The child spends the bulk of the time blowing out rather than breathing in. It can be helpful to describe this as blowing out slowly through a straw to encourage a very long extended out-breath with pursed lips. While doing this, the child can imagine breathing out warm, happy feelings from the heart.

HYPNOTHERAPY VIGNETTE 3 Carl, a 13-year-old male diagnosed with dysautonomia and  postural tachycardia syndrome (POTS), developed taste aversion to even bland foods such as boiled rice or cow’s milk. Anything he ate made him nauseous. He was referred for comanagement to the hypnotherapy clinic. Conversational hypnotic induction was used. The story of wild rats and how they learn to avoid developing taste aversion in garbage-laden areas was presented in a manner to evoke curiosity (Liu, 2011). How interesting was it that the wild rats could avoid getting sick from toxic food in garbage dumps by nibbling a little and walking away, instead of eating large servings? Similarly, Carl was encouraged to make almond milk smoothies with different fruits and vegetables each time (to vary the taste so as to avoid the conditioned taste aversions). He also sipped the drinks slowly and did not drink it all down in one swallow, just like the rats that would nibble the new foods.

Principles and Procedures Hypnosis is focused awareness of consciousness, like zooming in to the scene with a camera lens and then observing the details. This heightened awareness, informally known as the trance state, makes the mind more receptive to suggestions. This therapeutic tool has been of interest to Western medicine since at least the early 18th century (Kohen & Olness, 2012). In hypnotherapy a hypnotic state is induced by increasing focus on calming and comforting imagery/ideas. The therapist utilizes the child’s internal resources and interests to create a mental imagery and induce relaxation. The goal is to achieve a healthy altered state of consciousness (i.e., modified sensations and perceptions) in which the child is more susceptible to suggestions. In this state of high susceptibility to suggestions mastery-oriented suggestions are given for

CHAPTER 100  Hypnosis, Biofeedback, and Meditation

TABLE 100.3  Steps of Hypnotherapy Interview

Discussion about what is “hypnosis” and how and why we will utilize it in treatment. Understanding child’s developmental level, likes/interests, hopes and motivations and also aligning/understanding the goal of the parent, the therapist, and the child.

Induction techniques

Visual (multisensory), imagery (e.g., favorite place), ideomotor technique (e.g., magnet fingers), storytelling technique, progressive relaxation techniques, eye fixation techniques, distraction and utilization techniques.

Invitation

Inviting to use the induction techniques to create dissociation and focused attention.

Intensification

Enhancing the experience of the hypnotic state of narrowed focus by combining it with another complimenting technique (e.g., using magnet fingers [ideomotor induction] for invitation and combining it with visual [multisensory] experience for intensification).

Suggestions

Specific, personalized goal-oriented therapeutic suggestions made in hypnotic language that are ego-strengthening in this state of hypnosis.

Anchoring

Posthypnotic suggestions that encourage the person to take control and increase the expectancy of making the therapeutic change. It allows the person to access this self-hypnosis experience regularly and whenever needed.

Realerting

This can be more or less structured, depending on the client’s age and preference (e.g., “When you are done, you are done.”).

Debriefing

Discussion about the experience and what was it like for the patient.

the individual’s therapeutic goal. Hypnotherapy has specific techniques that cannot be learned without proper training. The specific steps of hypnotherapy have been summarized in Table 100.3. Diaphragmatic breathing can be incorporated as a means of intensification. The goal of hypnotherapy is to instill self-mastery or a skill set of interpersonal communication to facilitate a therapeutic change in maladaptive psychophysiologic reflexes. Hypnotherapy allows the utilization of inner control on healing. It also enables a patient to be more consciously engaged with other treatment modalities. In the last 2 centuries there has been an influx of research and work on the development of this tool and its utilization in children.

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Core features of hypnosis may vary with the child’s developmental stage. In the early childhood years the approach does not look like conventional methods, but moments of intense focus/relaxation are picked up by a trained therapist who will embed suggestions during a playful conversation. Children naturally go in and out of trance state/imaginative absorption and may or may not close their eyes during a formal therapy session. For adolescents, hypnotherapy will be similar to the adult experience, but it is important to understand the technique may require some modification based on the developmental/emotional/behavioral state of the child. The interview before therapy is to understand the developmental stage and interests of the child and align the goals of the parent, patient, and therapist. Once the technique is chosen, the therapy process is focused to increase inner absorption to enhance self-mastery and create a therapeutic change. It is important that when creating the change, the clinician be mindful of the patient’s personal goals and provide clear choices and suggestions for the patient. In clinical settings children can enter natural trance states (e.g., when presenting in pain or when they are afraid or preoccupied by the lights and gadgets in the examination room). Thus a clinician should be mindful of such moments and be careful in the use of language. Even when unintentional, negative or misunderstood suggestions in such states can be accepted as true (Kohen & Olness, 2012). However, positive suggestions can create the shift toward a therapeutic goal, behavioral modification, and self-control. By mastering language use as suggested earlier, principles of hypnotherapy can be applied to regular clinical/hospital practice even when not using formal hypnotherapy (Kaiser et al., 2018).

Applications of Hypnosis Hypnotherapy can be a component of treatment of several conditions such as pain, habit problems, psychophysiologic and psychological disorders (see Table 100.2) (Kohen & Olness, 2012). In some cases the hypnotherapy may be the primary treatment modality, but in many of the conditions it will be a supplement to other treatment modalities that may allow decreasing the dose or frequency of medications or other treatments. There is a dearth of large-scale randomized controlled trials to guide clinicians in determining what conditions or patients are most likely to respond to this intervention. Carl, described in the third vignette, had improvement in his taste aversion with hypnosis. As his taste aversion improved, the therapist began working with him on controlling his autonomic symptoms using biofeedback.

BIOFEEDBACK VIGNETTE 4 A 12-year-old girl, Julia, diagnosed with Raynaud syndrome, was referred by her rheumatologist. When exposed to cold, even holding a cold drink, her hands turn white and her fingers get numb. When her fingers warm up, they turn red and tingle.

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SECTION 10 Interventions, Management, and Treatment of Developmental and Behavioral Conditions

Principles and Procedures Biofeedback is defined as “a process that enables an individual to learn how to change physiological activity for the purposes of improving health and performance” (Schwartz, 2010). Precise electronic and electromechanical instruments measure physiologic activity such as brain waves, heart rate, breathing, muscle activity, and skin temperature. These instruments can rapidly and accurately feed back this information to the user (e.g., in visual, auditory, kinesthetic, or multimedia format). The individual learns to use this information and control these physiologic reactions/processes by changing behavior, thoughts, and emotions. Thus biofeedback allows an immediate and objective observation of this mind-body interaction (Schwartz & Andrasik, 2017). Over time these changes can endure without continued use of an instrument. Biofeedback has many similarities to hypnotherapy. As the instrument provides the patient physiologic information, the therapist uses hypnotic suggestions to encourage the patient to create the change in the therapeutic direction. The therapist intensifies this experience with ego-strengthening phrases (i.e., phrases that encourage feelings of personal adequacy and vitality). As the positive results are observed by both the clinician and the patient, the therapist uses future-oriented empowering suggestions (posthypnotic) for continued practice to sustain this change (Kaiser et al., 2018). Biofeedback equipment is widely available, simple to use, and can be fairly inexpensive. Examples range from simple devices that monitor color variation with skin temperature changes, to more complex computerized software and applications; it is now even available in videogame format. Newer technologies monitor heart rate variability with relaxation and increasingly provide child-friendly feedback formats.

Applications of Biofeedback Biofeedback alone and integrated with other interventions has evidence in the successful management of various clinical disorders such as acute and chronic pain, including pain associated with migraine headaches (Olness et al., 1987), tensiontype headaches (Labbé & Ward, 1990), or rheumatoid arthritis (Lavigne et al., 1992). Electromyography (EMG) biofeedback, urodynamics, and anorectal manometry have been utilized for biobehavioral disorders such as fecal incontinence (Olmsted et al., 1980) and enuresis (Kjølseth et al., 1994). Biofeedback in the form of electrodermal activity or finger temperature has been described for the management of autonomic dysfunction in conditions that include Raynaud disease (Rose & Carlson, 1987), hypertension (Ewart et al., 1987), and reflex sympathetic dystrophy (Barowsky et al., 1987). Surface EMG biofeedback has evidence for neuromuscular retraining such as gait training in children with cerebral palsy (Flodmark, 1986) and spasmodic torticollis (Jahanshahi et al., 1991). There is conflicting literature on neurofeedback treatment for attention-deficit/ hyperactivity disorder (Fox et al., 2005) and executive functions in autism spectrum disorders (Kouijzer et al., 2009). For Julia, described in the fourth vignette, after the history and rapport building, biofeedback principles were explained to her and her parents. A thermometer with a cord and a

temperature probe was prescribed (cost 50 kg + = 1.5 g b.i.d.

Two small RCTs have found 1 mg/kg body Pycnogenol improved weight/day ADHD symptoms. Two meta-analyses of Pycnogenol on a variety of health conditions deemed the evidence low grade.

Level of Evidence

Level C, Weak (Arnold et al., Recommendation 2007; Abbasi et al., 2011)

Generally, well Level B, Moderate (Chovanová et al., tolerated. Recommendation 2006; Dvoráková Occasional GI et al., 2006, 2007; upset, headache. Trebatická et al., 2006; Schoonees et al., 2012; Robertson et al., 2020) (Continued )

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SECTION 10  Interventions, Management, and Treatment of Developmental and Behavioral Conditions

TABLE 109.4  Integrative Interventions That Have Been Used for Attention-Deficit/  Cont’d Hyperactivity Disorder (ADHD) ­— Side Effects and Monitoring

Intervention

Comments

Study Dosing

St. John’s Wort

No effect in two RCTs. (Chan, 2008; Weber et al., 2008)

---

Level of Evidence

Combination Valerian and Lemon Balm

(Müller and Two observational (Sandrin®:640 mg Valerian is sedating Level C, Valerian Klement, 2006; studies of children not generally valerian root extract with dizziness, with hyperactivity and recommended for Gromball et al., drowsiness WS® and 320 mg 2014) attention issues but children. and mental lemon balm extract not meeting criteria for Weak slowness. Rare WS® ADHD found combination Euvegal® forte, recommendation hepatotoxicity. valerian and lemon balm for lemon balm. Lemon Balm 160 mg drug to improve focus, and is generally extract of Valerian decreased restlessness, well tolerated. roots and 80 mg hyperactivity and Occasional GI drug extract of impulsiveness. upset. lemon balm

Ginkgo biloba

Adjuvant therapy or for children who do not tolerate traditional medications.

Weight-based Dosing 30 kg: 120 mg/day (40 mg/t d s)

Generally well tolerated. Occasional dizziness, GI symptoms, headache. Caution with anticoagulant medications.

Level B, Weak (Salehi et al., Recommendation 2010; Uebel-von Sandersleben et al., 2014; Shakibaei et al., 2015)

Panax ginseng (Korean Red Ginseng

Two RCTs have found improvements.

1 g BID

Generally, well tolerated.

Level B, Moderate (Lee, Park and Lim, Recommendation 2011; Ko et al., 2014)

Neurofeedback

Several meta-analyses with results ranging from no significant effect to effects comparable to methylphenidate for inattention.

20 - 40 sessions, Generally, well each session 30 tolerated. 50 minutes. Various Occasional protocols: Beta/ mental fatigue, Theta, SCP, SMR dizziness.

Computerized/ Digital Cognitive Training

Computerized and non25 min per day, 5 computerized cognitive days per week for interventions are 4 weeks effective. Video gamebased interventions are a promising emerging field.

Level B, Not Associated with Recommended adverse events in children with ADHD (psychosis and increased agitation/ aggression)

Generally, well tolerated. May cause frustration and headache.

References (Chan, 2008; Weber et al., 2008; Mazhar et al., 2020)

Level B, Moderate (Arns, Clark, Recommendation Trullinger, deBeus, Mack, & Aniftos, 2009, 2020; Lofthouse et al., 2012; Vollebregt et al., 2014; MicoulaudFranchi et al., 2015; Cortese et al., 2016; Razoki, 2018; Van Doren et al., 2019) Level B, Moderate (Scionti et al., Recommendation 2019; Kollins et al., 2020; Peñuelas-Calvo et al., 2020)

CHAPTER 109  Integrative Medicine for Disorders of Development and Behavior

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TABLE 109.4  Integrative Interventions That Have Been Used for Attention-Deficit/  Cont’d Hyperactivity Disorder (ADHD) ­— Side Effects and Monitoring

Intervention

Comments

Study Dosing

Nature

One small observational study found a twenty minute walk in a park improved ADHD symptoms with effect sizes similar to methylphenidate.

20 minute walk in a park

None

Level C, Moderate (Taylor and Kuo, Recommendation 2009; Aspinall et al., 2015; Kuo, 2015; Summers and Vivian, 2018)

Mindfulness/ Meditation/ Yoga

Several meta-analyses with results ranging from no effect to significant effect for inattention and hyperactivity.

Refer to programs such as MBSR, MBCBT

None

Level B, Moderate (Krisanaprakornkit Recommendation et al., 2010; Chimiklis et al., 2018; Evans et al., 2018; Zhang, Díaz-Román and Cortese, 2018; Xue, Zhang and Huang, 2019; Cairncross and Miller, 2020; Vancampfort et al., 2020)

Acupuncture

Small RCT of auricular acupuncture showed benefit.

Refer to specialist.

Generally, well tolerated.

Level C, Weak (Li et al., 2011; Recommendation Yang et al., 2015; Binesh et al., 2020)

Martial Arts

RCT (n=40) with ADHD 50 minutes twice a found Taekwondo (TKD) week improved attention over traditional physical activity. Small observational study found Tai Chi improved ADHD symptoms.

None

Level C, Moderate (Hernandez-Reif, Recommendation Field and Thimas, 2001; Kadri et al., 2019; Riskowski and Almeheyawi, 2019)

Mediterranean Diet

Children with ADHD are more likely to have high sugar, high fat, low vegetable and low nutrient diet. Crosssectional suggested benefit of Mediterranean diet.

Mediterranean diet

None

Level C, Moderate (Ríos-Hernández et Recommendation al., 2017)

Oligoantigenic Diet (Few Foods Diet)

May be helpful for some children, but no guidelines to determine which children may benefit.

Refer to specialist.

Requires specialist Level B, Weak (Nigg et al., 2012; to prevent Recommendation Sonuga-Barke et malnutrition. al., 2013; Nigg and Holton, 2014; Stevenson et al., 2014; Pelsser et al., 2017; Uldall Torp and Thomsen, 2020)

Restricting artificial food color additives

May benefit some children

Restrict to foods without artificial food color additives.

None

MBSR=Mindfulness Based Stress Reduction, MBCBT=Mindfulness Based Cognitive Therapy.

Level of Evidence

References

Level B, Weak (Nigg et al., 2012; Recommendation Sonuga-Barke et al., 2013; Nigg and Holton, 2014; Stevenson et al., 2014)

CHAPTER 109  Integrative Medicine for Disorders of Development and Behavior

D, and magnesium and treating if low (see Table 109.4 in the online supplement). Neurofeedback and cognitive training (see Table 109.4 online) are safe and may be helpful but can be expensive as they are not routinely covered by insurance. (Additional interventions are reviewed online in Table 109.4.)

CONTROVERSIAL TREATMENTS IN INTEGRATIVE MEDICINE Medical Marijuana Marijuana (also known as cannabis) is derived from the plant Cannabis sativa. Several jurisdictions in the United States have legalized marijuanna for recreational and/or medicinal use. In children with behavior and developmental diagnoses, however, there is a paucity of robust research on cannabis-derived products in ASD and ADHD. Significant safety concerns exist regarding recreational cannabis use in the developing child and adolescent brain, including cannabis use disorder, cannabis withdrawal syndrome, cannabis allergy, cannabis hyperemesis syndrome, and vaping-induced lung injury. Additional cautions of using medical marijuana include drug interactions, where cannabidiol (CBD) is a potent inhibitor of cytochrome P450 enzymes. Further, the lack of manufacturing standards and oversight can provide a challenge for clinicians looking to recommend a reputable product with accurate dosing that is free of contamination. In ASD treatment, a recent systemic review by FusarPoli et al. (2020) of 10 studies (8 trials and 2 abstracts) indicated that cannabinoids showed promise in treating certain ASD-associated symptoms such as “improved behavioral problems, hyperactivity, sleep disorders, … and reduced the number of prescribed medications and significantly reduced the frequency of seizures in patients with comorbid epilepsy.” Cannabinoids had unclear effects on ASD core symptoms because several studies analyzed did not report on core symptom outcome measures. As of this publication there are four ongoing trials of cannabinoids for ASD patients registered at clinicaltrials.gov, and therefore additional results of prospective double-blinded trials are needed to support these early findings before drawing strong conclusions. Given the concerns about safety and regulatory issues, cannabis products cannot be safely recommended across the board for all patients seen in developmental-behavioral pediatric practices. Yet, some research suggests that despite the known issues with cannabis, in a subset of highly selected patients with ASD refractory to other conventional treatments, CBD with no or low levels of tetrahydrocannabinol may be considered as a last-line therapy if there is a clear and understood discussion about the risks and the benefits (Bostwick, 2012).

Chelation Therapy Chelation therapy is a chemical process in which patients use chelation agents such as ethylenediaminetetraacetic acid or dimercaptosuccinic acid to remove heavy metals or toxins from the body. Although the US Food and Drug Administration has only approved chelation therapy for

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patients with known and proven lead poisoning, others have explored it for neurodevelopmental disorders such as autism. The premise for this treatment is the hypothesis that children with ASD have heavy metal accumulation, and these heavy metals interfere with developmental processes. However, there is poor clinical evidence that chelation therapy is effective. Further, chelation therapy has serious risks, including renal injury, hypocalcemia, arrhythmia, hypertension, headache, hypoglycemia, thrombophlebitis, and death (Brown, Willis, Omalu, & Leiker, 2006). The routine use of chelation therapy for children with ASD is not proven to be efficacious, is not safe, and is not recommended.

Hyperbaric Oxygen Therapy (HBOT) HBOT is a treatment in which a patient is within an oxygen chamber and the atmospheric pressure is slowly increased to well above sea level (up to 1.3 atm). The physiologic premise for using HBOT is to increase the partial pressure of oxygen to deliver more oxygen to hypoperfused cerebral tissues in autistic children and improve neuroinflammation through antiinflammatory mechanisms. Only one RCT of 60 children age 2 to 7 years found improved symptom scores in patients randomized to receive 40 1-hour sessions at 1.3 atm (24% oxygen) compared with placebo (chamber at atmospheric pressure and ambient air) (Rossignol et al., 2009). Other RCTs have not replicated these results. Regarding safety, some studies report adverse effects of tympanic membrane rupture due to barotrauma, and nonverbal children may not be able to express discomfort. Further, the time and cost of HBOT treatments are significant: up to $150 per 1-hour session with some families pursuing a course of 10, 40, or up to 120 sessions. Given the significant cost and time investment, the lack of robust evidence for efficacy and potential harm, HBOT is not recommended for treatment of ASD. Sam, in the vignette, had a favorable response to his parents’ initiation of an elimination diet. His parents were very interested in supplements given his poor progress with educational interventions. They liked the rationale and data for methyl B12 and were willing to administer the subcutaneous injections. The integrative clinician steered them away from HBOT for reasons discussed in the chapter. They recognized that they had not instituted a reliable bedtime routine and were willing to try it. They were pleased with the results of these treatments. If Sam’s symptoms continue to improve, lifestyle interventions might be more feasible than they had been thus far. Ongoing monitoring is critical.

CONCLUSION Integrative medicine is frequently pursued by families for various behavior and development conditions. These modalities may play an increasing role as we learn about the underlying mechanisms. Individualization will be important as many of the mechanisms and proposed treatments seem to affect only subsets of the population.

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(St John’s wort) for attention-deficit/hyperactivity disorder in children and adolescents: A randomized controlled trial. JAMA, 299(22), 2633–2641. https://doi.org/10.1001/jama.299.22.2633 Wigton, R., Radua, J., Allen, P., Averbeck, B., Meyer-Lindenberg, A., McGuire, P., Shergill, S., & Fusar-Poli, P. (2015). Neurophysiological effects of acute oxytocin administration: Systematic review and meta-analysis of placebo-controlled imaging studies. Journal of Psychiatry & Neuroscience, 40(1), E1–E22. https://doi.org/10.1503/jpn.130289 Wills, S., Cabanlit, M., Bennett, J., Ashwood, P., Amaral, D. G., & Van de Water, J. (2009). Detection of autoantibodies to neural cells of the cerebellum in the plasma of subjects with autism spectrum disorders. Brain, Behavior, and Immunity, 23(1), 64–74. https://doi.org/10.1016/j.bbi.2008.07.007 Wolraich, M. L., Hagan, J. F., Allan, C., Chan, E., Davison, D., Earls, M., Evans, S. W., Flinn, S. K., Froehlich, T., Frost, J., Holbrook, J. R., Lehmann, C. U., Lessin, H. R., Okechukwu, K., Pierce, K. L., Winner, J. D., Zurhellen, W., & Disorder, S. on C. and A. with A.-D., (2019). Clinical Practice Guideline for the Diagnosis, Evaluation, and Treatment of Attention-Deficit/Hyperactivity Disorder in Children and Adolescents. Pediatrics, 144(4). https://doi.org/10.1542/peds.2019-2528 Wong, V. C. N., & Chen, W. -X. (2010). Randomized controlled trial of electro-acupuncture for autism spectrum disorder. Alternative Medicine Review: A Journal of Clinical Therapeutic, 15(2), 136–146 Wuang, Y. -P., Wang, C. -C., Huang, M. -H., & Su, C. -Y. (2010). The effectiveness of simulated developmental horse-riding program in children with autism. Adapted Physical Activity Quarterly: APAQ, 27(2), 113–126. https://doi.org/10.1123/apaq.27.2.113 Xiong, T., Chen, H., Luo, R., & Mu, D. (2016). Hyperbaric oxygen therapy for people with autism spectrum disorder (ASD). The. Cochrane Database of Systematic Reviews, 10, CD010922. https://doi.org/10.1002/14651858.CD010922.pub2 Xu, G., Snetselaar, L. G., Jing, J., Liu, B., Strathearn, L., & Bao, W. (2018). Association of Food Allergy and Other Allergic Conditions With Autism Spectrum Disorder in Children. JAMA Network Open, 1(2), e180279. https://doi.org/10.1001/ jamanetworkopen.2018.0279 Yan, Y., Wei, Y., Chen, Y., & Chen, M. (2007). [Effect of acupuncture on rehabilitation training of child’s autism]. Zhongguo Zhen Jiu = Chinese Acupuncture & Moxibustion, 27(7), 503–505 Yang, C., Hao, Z., Zhang, L. -L., & Guo, Q. (2015). Efficacy and safety of acupuncture in children: An overview of systematic reviews. Pediatric Research, 78(2), 112–119. https://doi. org/10.1038/pr.2015.91 Zhang, J., Díaz-Román, A., & Cortese, S. (2018). Meditation-based therapies for attention-deficit/hyperactivity disorder in children, adolescents and adults: A systematic review and meta-analysis. Evidence-Based Mental Health, 21(3), 87–94 Zhao, Z., Jia, S., Hu, S., & Sun, W. (2014). Evaluating the effectiveness of electro-acupuncture as a treatment for childhood autism using single photon emission computed tomography. Chinese Journal of Integrative Medicine, 20(1), 19–23. https://doi.org/10.1007/s11655-014-1680-2 Zou, R., Xu, F., Wang, Y., Duan, M., Guo, M., Zhang, Q., Zhao, H., & Zheng, H. (2020). Changes in the gut microbiota of children with autism spectrum disorder. Autism Research, 13(9), 1614–1625. https://doi.org/10.1002/aur.2358

110 Community-Based Interventions Lisa Ramirez and Katie Davis

For additional material related to the content of this chapter, please see Chapters 15 and 20.

VIGNETTE In one midwestern state suicide has overtaken accidental death/injuries as the leading cause of death in children ages 10 to 14 (Ohio Department of Health, 2019). Several school districts within the county have reached out to local pediatricians and mental health professionals asking for support in recognizing and addressing a recent increase in suicidal statements, gestures, and deaths. A needs assessment highlighted several challenges and opportunities within these districts. One of the biggest barriers identified involves the stigma surrounding mental health concerns, leaving many caregivers hesitant to disclose that their child is in distress and schools unaware that their students need and/or are receiving mental health services. Access to mental health services, due to insurance barriers, long wait lists, and confusion about roles of various mental health professionals, was another significant issue. Interestingly, the needs assessment also revealed that many of the high school students reported general education around mental health as their most significant unmet need. These school systems recognize that they need assistance in addressing mental health gaps, but they are unsure of how to engage their partners, and what level of support would be appropriate. Several of these school districts are in underresourced neighborhoods that have a complicated history with many of the medical systems in the area, and there is often skepticism in accepting services from medical and mental health organizations. This scenario highlights an opportunity for professional intervention in a specific school community, and introduces several challenges encountered when exploring community partnerships and community-based interventions.

INTRODUCTION Community-based interventions are programs that are delivered in a community context (loosely defined within this chapter as a group of people with some characteristics in common, including geographic area, age, and cultural identities) and are intended to meet an identified need (Jason, Glantsman, O’Brien, & Ramian, 2019). There are wide ranges of specific targets and intentions behind community-based interventions, which could vary based on the level of intervention intended and community of interest. Often, community-based interventions imply that the curriculum/intervention/efforts are delivered in a setting outside of the traditional medical/mental 1050

health setting. While there are a multitude of examples of community interventions, this chapter will focus on a general overview of community-based interventions, discuss important considerations, highlight two specific examples, and provide resources for additional information.

WHAT IS COMMUNITY-BASED INTERVENTION? In traditional models mental health systems tend to respond to patients and families once problems arise, including once a diagnosable mental health problem has been recognized, or once a patient or family has concerns about functioning. Conversely, pediatric health clinicians generally spend a lot of time on prevention. They see children and families regularly and provide guidance on how to promote healthy development, and they screen for developmental problems. Clinicians are also ready to address problems that arise (e.g., in sick visits and while staffing inpatient floors). In this sense preventing problems and reacting to presenting problems are opposite ends of the intervention continuum, but much of the connection and intervention happens in their own institutions, organizations, or systems, not out in the community. Conversely, many community interventions follow a public health model, which tends to focus on environmental and social determinants of health and mental health outcomes. As we continue to understand the vast influence various systems and environmental factors have on the wellbeing of children and their families, community interventions offer rich opportunities to improve health and wellness and to address complex problems. Community-based interventions can be categorized and conceptualized in a variety of ways. One approach is to begin by considering community as (1) the setting for the intervention, (2) the overall target of the intervention, (3) a collection of internal resources, and/or (4) the agent itself (McLeroy, Norton, Kegler, Burdine, & Sumaya, 2003). Jason et al. (2019) stressed the importance of differentiating communitybased interventions as either professionally led or grassroots, the latter of which implies collaboration between community members and their professional partners. As implied by the name, grassroots initiatives focus on understanding the ecology of the community and adapting interventions based on the feedback and needs of the community members. As those invested in creating behavior change understand, using individual and community assets to encourage sustainable change is preferred; however, not all communities are ready or able to act as their own change agents.

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Complex Problems Health professionals are often tasked with addressing complex problems—medical, behavioral, or developmental in nature—yet are limited by system factors (e.g., resources are accessible and can be modified). One of the most attractive parts of community-based interventions is that it allows access to patients and their families, in their home environment, often where they are engaged or experiencing the identified challenges. This allows access to multiple systems where complex problems are often entangled. For context, only 20% of an individual’s health outcomes are determined by the medical care they receive; the remaining 80% of outcomes are determined by environment and social determinants of health (Manatt & Phillips, 2019). Professionals interested in patients’ and families’ health need to consider more factors than what can be addressed in the proverbial office. Clinicians within a medical system serve as experts on child and adolescent health to support youth and their families. Their expertise also lends well to serving as partners in community-based interventions. Clinicians are in a unique position to be able to gauge and understand the root or cause of the identified problem and intervene in a broader way— both directly and/or to empower a community to improve certain outcomes (McLeroy et al., 2003). There are challenges associated with community collaborations. Before jumping prematurely into creating community-based interventions, there are several considerations, including identifying the actual (unmet) need, resources available to address the (unmet) need, and identifying expertise/ability/willingness to create the intervention (Lopez, 2016).

CONSIDERATIONS IN COMMUNITY-BASED INTERVENTIONS Inherently, delivering services in a community implies that collaboration must occur, at minimum, between the entity delivering the intervention and the community setting in which the services are being delivered. However, there are often multiple layers of systems (e.g., caregivers, transportation entities, community advocates, schools, and legal partners) that can be critical when working with children and families. In this section we will highlight important considerations for these important collaborations.

Cultural Humility and Sociocultural Implications Culture has many definitions/applications in these contexts and it is important to consider the culture of the community (demographic, religious, political, openness to collaboration, etc.) and the relative culture of the service provider. Lack of consideration and awareness of cultural mismatches/ challenges can greatly diminish the effectiveness of the intervention if we make cultural missteps. One example is the difference between the medical culture and culture of a (hypothetical) community center. For those of us that operate in medical systems, the medical culture can be hierarchic in nature, with clear expectations of roles and responsibilities, and an emphasis on health literacy. Communities may

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place more of an emphasis on relationships and connection than on expertise and hierarchy. Additionally, while medical culture values privacy, many communities rely on a network of support and services. Leaders in a community may not understand—and even misinterpret—why the medical professionals may be uncomfortable discussing individuals involved in the interventions (e.g., ethical standards related to communications related to patient care), which may set the stage for distrust and disruptions in communication and the larger relationship. Appreciation of these differences in cultures can be critical in setting up partnerships in a meaningful way that will feel respectful and beneficial to all parties involved. We would be remiss to discuss cultural humility without discussing two important topics: trauma-informed care and systemic racism. Although the concept of trauma-informed care may not be new, the framework has gained more traction in pediatric health care settings, at least in part due to the increased awareness of the impact of adverse childhood experiences (ACEs) on children. Beyond the individual impact of trauma and ACEs, trauma-informed care provides explicit concepts to practice and can be a critical framework when partnering with communities. The six core tenets of trauma-informed care are (1) safety, (2) trustworthiness and transparency, (3) peer support, (4) collaboration and mutuality, (5) empowerment and choice, and (6) cultural, historical, and gender issues (Centers for Disease Control and Prevention [CDC], 2020). As alluded to in the vignette at the opening of the chapter, there is often an inherent distrust between communities and medical/ mental health systems due to historical traumas perpetrated by those in positions of privilege. Trauma-informed care can be an important practice in regaining trust in communities that have historically been exploited (see Chapter 15 for more information on trauma-informed care). Systemic racism, often used interchangeably with structural racism, refers to the tendency of policies, practices, and attitudes to systemically reinforce inequities between racial groups (Aspen Institute, n.d.). Since 2019 various local and state leaders declared racism a public health crisis or emergency. Public health and medical organizations also joined in raising their voices and sharing of research to demonstrate the implications systemic racism has on an individual’s health and outcomes. Awareness and acknowledgment of systemic racism aids in shifting discriminatory norms and allowing health and community partners to have honest and transparent communication around barriers that may hinder engagement, recruitment, equitable recruitment in outcome evaluation, and many other areas critical to understanding the true impact of these interventions (see Chapter 20).

Ethical Standards Ethical considerations are critical in community-based intervention initiatives. Each partner has particular ethical standards. In medical systems the Health Insurance Portability and Accountability Act (US Department of Health and Human Services, 2003) guides our standards for communicating and handling patient information. However, schools and other

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educational entities are informed by the Family Educational Rights and Privacy Act (US Department of Education, 2020), whose standards and thresholds vary from medical standards. Also, health policies or law may enable youth to access prevention services legally as a mature minor (many states afford this right for sexual health and mental health services), yet lack of funding or processes to support policies inhibits access to care. In the interest of effective and meaningful communication discussions around ethical standards should be an early consideration when exploring collaborative partnerships. With regard to ethical considerations, youth are often amenable to prevention initiatives, unlike adult populations, when interventions tend to be reactive in nature. However, youth also introduce issues of assent and parental consent, developmental considerations, caregiver influence, and substantial environmental influences (e.g., school/education, peers). Youth are considered vulnerable populations by many regulatory authorities, and higher standards may apply to community-based initiatives focused on youth and families.

Sustainability The content of community-based interventions is often not reimbursable or billable within the medical system (insurance, Medicaid, Medicare), and ensuring sustainable funding for these programs can be difficult. Community-based interventions are frequently supported by grants or philanthropic sources, which can be beneficial when exploring the feasibility of the intervention. However, there is a need to balance determining feasibility with finding ways to establish sustainability so that intervention initiatives do not become a series of inconsistent pilots, which can inadvertently damage long-term trust between health entities and communities. Examples of means for sustainability include partnering with managed care organizations to fund prevention work that decreases long-term health costs; aligning with local/ state/federal funding streams that focus on specific outcomes targeted by intervention programming; finding local philanthropic partners that are interested in similar initiatives; and identifying possible billable services related to your intervention programming, which is often more realistic in level 2 and 3 programming (which we will cover in tiered preventions). Fortunately, many community-based interventions can result in long-term cost savings, which is often a benefit of prevention initiatives. Some examples include the Communities Putting Prevention to Work intervention (prevention initiatives focused on obesity, tobacco use, and secondhand smoke), which the CDC estimated would save $5.96 billion (about $18 per person in the United States) by 2020 (CDC, 2013). The Sycamore Institute (Melton, 2019) reports that unaddressed ACEs cost the state $5 billion annually in health and missed work expenditures, which implies that community-based interventions to screen, identify, and address ACEs may save at least a portion of the billions they are losing. While systems may not be reimbursed for the direct services provided by the community-based initiatives, the long-term and/or downstream savings may be enough to convince an organization that community interventions are a worthwhile investment. In

alignment with these thoughts it is essential to explore advocacy and policy changes that support long-term prevention funding that results in additional cost savings. Cost savings are not only financial: if funders and policymakers identify multiple returns on investment, such as increased graduation rate or decrease in juvenile recidivism, they also will see cost savings in both the medical and social arenas.

Tiered Response to Intervention In traditional medical and mental health models interventions can be conceptualized as occurring across a continuum of response to the identified target need or outcome. One common framework is the three-tiered level of prevention/ intervention that is often used in educational and public health settings. The first tier of the framework is often referred to as primary prevention and focuses on preventing a particular outcome. Primary intervention is also known as universal intervention because the prevention efforts are universally available to a wider population. Public health may consider primary prevention to focus on health promotion and promoting protective factors before disease occurs (CDC, n.d.; MacArthur, n.d.), and educational settings may identify primary interventions as those geared toward all students to promote academic success (Center on PBIS, n.d.). The second tier focuses on screening individuals to identify those at risk for a particular problem or outcome. These secondary prevention/intervention services are delivered to a targeted group of individuals that have been identified as needing a targeted, often small group intervention to prevent further progression of the disease, deficit, or problem (CDC, n.d.; Center on PBIS, n.d.; MacArthur, n.d.). Examples of secondary interventions may include services for students who have been flagged for elevated levels of depression/anxiety symptoms, children identified as having reading problems, and regular sexual health testing in teens who are sexually active. The third tier is referred to as tertiary intervention/prevention and focuses on managing active disease, or providing intensive, individualized educational services or mental health treatment. Tertiary interventions may include drug and alcohol treatment for adolescents who have addiction issues, individualized education plans in school settings, and medication for medical diagnoses (CDC, n.d.; Center on PBIS, n.d.; MacArthur, n.d.).

Evidence Base The emphasis on evidence-based practice is inherent in medical and mental health training. Clinicians are often accustomed to delivering evidence-based services in controlled settings and ways (e.g., medical office, prescribed course of treatment), but community interventions introduce factors that are not often considered or easily controlled (e.g., built environment, motivation to engage, accessibility and relevance). Demonstrating effectiveness in a medical office, clinic, or setting does not mean that it will generalize to a community-based implementation. Additionally, conducting evaluations of communitybased interventions can be more challenging than standard evaluations, and it may be 2 years or more before it is possible

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to begin to measure the effects of the programs (CDC, 2013). Furthermore, unlike direct interventions to reduce active and measurable problem/outcomes (e.g., lowering blood pressure or A1c or weight), community-based interventions are often undertaken to ameliorate, reduce, or altogether prevent specific outcomes, which can take months, years, or decades to understand the impact of the programming. Consider prevention of lead exposure: early childhood intervention initiatives and other long-term health interventions require years to gather and analyze relevant outcomes. As mentioned earlier in the chapter, having the participation of community members in the design and implementation of the community intervention is a valuable step that can address collaboration, cultural considerations, and other challenges. For this reason, community-based participatory action research continues to increase in use and popularity. Additionally, many challenges faced by professionals are also familiar to community members who are actively engaged in their own strategies for addressing these issues. Joining forces can add professional input and resources, while capitalizing on strategies that may be more effective in attracting and engaging desired/targeted community members.

Health System as a Partner for Communities Medical/health care delivery/mental health systems have the potential to be valuable partners within the community. Often, health systems have established relationships with schools, community organizations, neighborhoods, libraries, recreation centers, and other partners. If we are cognizant about nurturing relationships and building trust, it will be less cumbersome when approaching community partners for conversations about collaborations to address a widespread problem/challenge. Subject matter experts (SME; e.g., physicians, psychologists, nurses, social workers) may serve a critical role in ensuring evidence-based, or as close to evidence-based as possible, theory/curriculum/interventions are central to community-based initiatives. SMEs are obviously well suited for professionally led initiatives and can be invaluable to grassroots efforts if they attend to the components of successful community-based participatory collaborations. Health systems may also be able to provide valuable resources within the partnership. Many clinicians work in environments where resources are more readily available than in the communities with which they are partnering. Examples of valuable resources may include access to physical health care, care coordinators, physical space, medical equipment, research, supplies, and administrative infrastructure.

COMMUNITY-BASED INTERVENTION IN ACTION There are a multitude of successful community-based initiatives that range from universal to individualized in nature, within a variety of targeted communities. There are resources available in which established community-based interventions are listed. One such resource is a compendium of proven community-based prevention initiatives (New York Academy

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of Medicine, 2013), which includes programs focused on preventing asthma, injury and violence, and tobacco and alcohol use. Although this chapter does not provide the space to review existing community-based interventions in depth, we will discuss two specific areas of community-based interventions: suicide and bullying.

Suicide This chapter opened by highlighting in the vignette the increase of suicide rates in the youth population in one Midwestern state. This data trend is unfortunately matched across the United States, with suicide being the second leading cause of death for 10- to 24-year-olds (National Institute of Mental Health, 2021). Research has demonstrated that fixed risk factors include but are not limited to family history of suicide, previous suicide attempt, personal mental health problems that predispose to suicide, and social and environmental risk factors that include bullying, impaired child-parent relationships, school difficulties, or stressful life experiences (Shain, 2016). Individual protective factors can include relationships with peers, family, school, or religion that may mitigate risk factors of suicide (Shain, 2016). A systematic review (Zalsman et al., 2016) of suicide prevention strategies noted that school-based suicide awareness programs have been shown to reduce suicide attempts and suicidal ideations. Signs of Suicide (SOS; Mindwise Innovations, 2021) is one school-based intervention used in middle and high schools and is recognized in the Substance Abuse and Mental Health Services Administration (SAMHSA) Evidence-Based Practice Resource Center (pre-2015) (Suicide Prevention Resource Center, 2016). SOS is a tier 1 prevention program developed by mental health professionals in collaboration with school communities. It has separate curricula for each grade band, and the curricula have demonstrated a decrease in self-reported suicide attempts and increased knowledge of mental health issues related to suicide among students (Aseltine et al., 2007). SOS is typically offered with in-person or virtual sessions and provides training and support materials for school staff and families. Students report having increased knowledge about suicide, feeling more comfortable asking for help, and believing stigma around mental health is reduced within the school climate. The program has been delivered across the United States to a diverse group of students and demonstrates effectiveness across gender and race (Mindwise Innovations, 2021). Notably, despite the increase in general suicide prevention research, there continues to be limited research in low- to middle-income countries and among youth with high suicide risk factors. Additionally, most of the research in this area has evaluated adult interventions that were modified for youth, as there are few interventions that have been created for youth (Robinson et al., 2018). As was highlighted in the opening vignette, youth suicide is a serious and complex problem that has demonstrated benefit from community-based interventions, yet many of the issues highlighted in the considerations section apply to suicide interventions. Different geographic regions and cultures

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have differing views on the appropriateness of discussions around suicide. Logically, sustainability in a program targeting suicide and suicide prevention among youth is an important consideration, and school communities would be upset if a successful program were to be removed from their community due to lack of available funding.

Bullying Like suicide trends, the prevalence of bullying victimization rates in children is on the rise in the United States (Patchin, 2019). Bully victimization in childhood can increase risk for negative physical and mental health problems across the life span and can ultimately impact financial and educational attainment (Wolke et al., 2013). The need for effective and efficacious prevention programs related to bullying is well documented, and bullying prevention programs are effective at reducing perpetration and victimization by up to 20% (Gaffney, Ttofi, & Farrington, 2019). Vreeman and Carroll’s (2007) systematic review of research on school-based bullying prevention programming highlighted the inherent value of implementing whole-school interventions that spark wide-reaching cultural change across systems (e.g., students, teachers, administrators) instead of classroom curriculum or small group–based programming aimed only at shifting individual/student behaviors. Importantly, Olweus and Limber’s (2010) experiences implementing the Olweus Bullying Prevention Program across US schools emphasized how critical the school communities were to the success of the program. Despite general success of the program in decreasing rates of bully victimization and antisocial behaviors in the intervention schools, the readiness and attitudes of the broader school community—including school staff and student caregivers, and ranging from insufficient time to implement proper training to disbelief that bullying was a problem impacting their community—directly affected program fidelity and sustainability. The authors highlighted that piecemeal and/or shortterm solutions do not produce the cultural changes needed to decrease bullying behavior. In this case the more engaged and collaborative the community partner was, the stronger (in direct and long-term impacts) the positive effects. This reinforces the ethical consideration that providing the curriculum, or content, to the community partner may not be enough to address the identified problem if the community is not fully engaged with the efforts. This also highlights the need for community stakeholders (in this case the school) to be involved in the planning process to identify barriers for implementation and program delivery that stem from internal and/or community sociocultural norms or biases.

ADDITIONAL RESOURCES Thus far, this chapter has covered broad theory and considerations in community-based interventions, as well as provided a few examples of actual interventions. However, this last section provides resource recommendations for planning and engaging in community-based interventions.

Programming Framework SAMHSA’s (2019) prevention guidebook provides a comprehensive manual covering five critical steps for successful implementation of prevention initiatives: assessment, capacity, planning, implementation, and evaluation. The manual also discusses sustainability, cultural competence, evaluation strategies, and reporting outcomes. The Center for Community Health and Development’s (n.d.) Community Toolbox provides a free, online, practical toolbox for individuals and organizations interested in becoming involved in community-based initiatives, and the toolbox provides step-by-step instructions for addressing many of the issues we have highlighted in this chapter.

Community-Based Participatory Research As mentioned earlier in the chapter, a key factor to successful community-based interventions is including patients/community members in the process from the planning stages. The foundations of community-based participatory research (CBPR) are well-established fundamentals that can aid in establishing a solid foundation in community collaborations. PolicyLink and the UC Berkeley School of Public Health have created a report on CBPR that provides background and strategies for meaningful relationships (Minkler, Garcia, Rubin, & Wallerstein, 2012). Similarly, the previously mentioned Community Toolbox (Center for Community Health and Development, n.d.) has devoted an entire section to CBPR.

Data Sets Clinicians assess patients based on both objective and subjective data to provide recommendations and care. When partnering with the community, a population-level approach may be needed for analysis. A variety of data sets on child health exist to both assess and improve health outcomes. We refer you to Appendix A of Children’s Health, The Nation’s Wealth: Assessing and Improving Child Health (Ettinger, 2004), a comprehensive list of existing data sets to use within your collaborative needs assessments. This table provides information about existing data sets, categorized by age of the participants, the periodicity (e.g., single data point, longitudinal) of the data collection, and the geographic detail (local, state, national, international), and includes direct links to the specific data sets. One example of a frequently referenced data set in community-based interventions in the CDC’s (2017) Youth Risk Behavior Surveillance System (YRBSS). The YRBSS was created to monitor risky health behaviors in teenagers across the United States, including unintentional injuries and violence, drug and alcohol use, dietary behaviors and physical activity, and some mood and mental health areas. The YRBSS data set can be examined at local, state, and national level. The data are commonly used to identify high-risk behaviors that may benefit from community-based interventions, including to educate and raise awareness of youth high-risk behaviors to parents, schools, youth-based community organizations, and health care institutions.

CHAPTER 110  Community-Based Interventions

CONCLUSION As illustrated in the opening vignette and highlighted throughout the chapter, communities often struggle with health—including medical and mental health—challenges that lend themselves to community-based intervention. Clinicians are uniquely suited to collaborate with community partners to establish meaningful interventions. These collaborations may be preventive in nature or targeted in addressing chronic and/or severe problems. We have highlighted important considerations in community-based work, described several programs, and directed the reader toward further resources for learning about and engaging in community-based interventions. We hope to have left you with a sense of the value our profession can provide in collaborative, community-based partnerships and have encouraged you to consider providing your professional expertise to communities in your area.

REFERENCES Aseltine, R. H., James, A., Schilling, E. A., et al. (2007). Evaluating the SOS suicide prevention program: A replication and extension. BMC Public Health, 7, 161. https://doi. org/10.1186/1471-2458-7-161 Aspen Institute, Roundtable for Community Change. (n.d.). Glossary for understanding the dismantling structural racism/ promoting racial equity analysis. aspeninstitute.org. https://www. aspeninstitute.org/wp-content/uploads/files/content/docs/rcc/ RCC-Structural-Racism-Glossary.pdf Center for Community Health and Development. (n.d.). Table of contents. Community tool box. https://ctb.ku.edu/en/table-ofcontents Center on PBIS. (n.d.). Tiered framework. PBIS.org. https://www. pbis.org/pbis/tiered-framework Centers for Disease Control and Prevention. (n.d.). Prevention. https://www.cdc.gov/pictureofamerica/pdfs/Picture_of_ America_Prevention.pdf Centers for Disease Control and Prevention. (2013). Brief executive summary, community based interventions, 2010–2013. National Center for Chronic Disease Prevention and Health Promotion, Division of Community Health. https://www.cdc.gov/nccdphp/ dch/programs/communitiesputtingpreventiontowork/pdf/ community-based-interventions-executive-brief-update.pdf Centers for Disease Control and Prevention. (2017). Youth risk behavior survey. https://www.cdc.gov/healthyyouth/data/yrbs/ Centers for Disease Control and Prevention. (2020). Infographic: 6 guiding principles to a trauma-informed approach. https://www. cdc.gov/cpr/infographics/6_principles_trauma_info.htm Ettinger, A. S. (2004). Appendix A: Datasets for measuring children’s health and influences on children’s health: Children’s health, the nation’s wealth: Assessing and improving child health. National Academies Press. Gaffney, H., Ttofi, M. M., & Farrington, D. P. (2019). Evaluating the effectiveness of school-bullying prevention programs: An updated meta-analytical review. Aggression and Violent Behavior, 45, 111–133. Jason, L. A., Glantsman, O., O’Brien, J. F., & Ramian, K. N. (2019). Introduction to the field of community psychology. In Introduction to community psychology. Pressbooks.

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Lopez, C. (2016). Analyzing community problems and designing and adapting community interventions. Center for Community Health and Development. University of Kansas. Macarthur, S. (n.d). Preventative health care and public health. MPH Online. https://www.mphonline.org/preventative-care-guide/ Manatt, P., & Phillips, L. L. C. (2019). Medicaid's role in addressing social determinants of health. RWJF.org. https://www.rwjf.org/ en/library/research/2019/02/medicaid-s-role-in-addressingsocial-determinants-of-health.html McLeroy, K. R., Norton, B. L., Kegler, M. C., Burdine, J. N., & Sumaya, C. V. (2003). Community-based interventions. American Journal of Public Health, 93(4), 529–533. Melton, C. (2019). The economic cost of ACEs in Tennessee medical costs and worker absenteeism from health issues attributed to adverse childhood experiences. The Sycamore Institute. https://www.sycamoreinstitutetn.org/economic-cost-adversechildhood-experiences/. Mindwise Innovations. (2021). Suicide prevention. https://www. mindwise.org/suicide-prevention/ Minkler, M., Garcia, A. P., Rubin, V., & Wallerstein, N. (2012). Community-based participatory research: A strategy for building healthy communities and promoting health through policy change. PolicyLink. National Institute of Mental Health. (2021). Statistics: Suicide. https://www.nimh.nih.gov/health/statistics/suicide.shtml New York Academy of Medicine. (2013). A compendium of proven community-based prevention programs. https://citeseerx.ist.psu.edu/ viewdoc/download?doi=10.1.1.591.4666&rep=rep1&type=pdf Ohio Department of Health. (2019). Suicide deaths increased by 45% among all Ohioans and by 56% among youth ages 10–24 from 2007–2018. https://odh.ohio.gov/wps/wcm/connect/ gov/b9f06188-5026-4695-ae03-06226dc49f22/ODH+News+ Release+--+Ohio+Suicide+Demographics++Trends+Report. pdf?MOD=AJPERES&CONVERT_TO=url&CACHEID= ROOTWORKSPACE.Z18_M1HGGIK0N0JO00QO9DDDD M3000-b9f06188-5026-4695-ae03-06226dc49f22-mVCCixj Olweus, D., & Limber, S. P. (2010). Bullying in school: Evaluation and dissemination of the Olweus Bullying Prevention Program. American Journal of Orthopsychiatry, 80(1), 124. Patchin, J. W. (2019). School bullying rates increase by 35% from 2016 to 2019. Cyberbullying Research Center. https:// cyberbullying.org/school-bullying-rates-increase-by-35-from2016-to-2019 Robinson, J., Bailey, E., Witt, K., Stefanac, N., Milner, A., Currier, D., … Hetrick, S. (2018). What works in youth suicide prevention? A systematic review and meta-analysis. EClinicalMedicine, 4, 52–91. Shain, B. (2016). Suicide and suicide attempts in adolescents. Pediatrics, 138(1). Substance Abuse and Mental Health Services Administration. (2019). A guide to SAMHSA’s strategic prevention framework. https://www.samhsa.gov/sites/default/files/20190620-samhsastrategic-prevention-framework-guide.pdf Suicide Prevention Resource Center. (2016). SOS sings of suicide middle school and high school prevention program. sprc.org https://sprc.org/resources-programs/sos-signs-suicide US Department of Education. (2020). Family Educational Rights and Privacy Act (FERPA). https://www2.ed.gov/policy/gen/guid/ fpco/ferpa/index.html US Department of Health and Human Services. (2003). OCR privacy brief: Summary of the HIPAA privacy rule. https://www. hhs.gov/sites/default/files/privacysummary.pdf

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Vreeman, R. C., & Carroll, A. E. (2007). A systematic review of school-based interventions to prevent bullying. Archives of Pediatrics & Adolescent Medicine, 161(1), 78–88. Wolke, D., Copeland, W. E., Angold, A., & Costello, E. J. (2013). Impact of bullying in childhood on adult health, wealth, crime, and social outcomes. Psychological Science, 24(10), 1958–1970.

Zalsman, G., Hawton, K., Wasserman, D., van Heeringen, K., Arensman, E., Sarchiapone, M., … Zohar, J. (2016). Suicide prevention strategies revisited: 10-year systematic review. The Lancet Psychiatry, 3(7), 646–659.

111 Endocrine and Gynecologic Management of Children With Severe Disabilities Shanlee Davis and Eliza Buyers

For additional material related to the content of this chapter, please see Chapter 74.

VIGNETTE EM is a 9-year-old female with optic nerve hypoplasia sequence, epilepsy, and profound intellectual and physical disabilities resulting in immobility and need for full support of all activities of daily living. She was diagnosed with growth hormone (GH) deficiency and hypothyroidism in infancy and has been on levothyroxine 50 mcg daily, but parents elected not to treat with GH. There is increasing distress about how EM’s parents will be able to safely care for her as she grows. Her mom is her primary caregiver and transfers are already very difficult; despite precautions, a recent fall resulted in a femur fracture. EM’s parents are interested in learning if growth attenuation is an option. They are also anxious about upcoming pubertal changes, specifically menstrual periods, which will add an additional hygiene burden and may worsen her seizures. She already sees many pediatric subspecialists but does not see endocrinology or gynecology.

This clinical vignette presents numerous endocrine- and gynecologic-related concerns that are common in children with severe disabilities, including fragility fractures, central hormone deficiencies, growth attenuation, and menstrual suppression. These topics and more will be discussed in this chapter with a focus on recognizing when consultation with endocrine and/or gynecology specialist is warranted.

ENDOCRINE MANAGEMENT OF CHILDREN WITH DEVELOPMENTAL DISABILITIES Bone Density and Preventing Fragility Fractures Clinical Presentation of Osteoporosis and Fragility Fractures in Children With Developmental Disabilities Children with severe developmental disabilities have numerous risk factors for low bone mineral density and subsequently risk for fractures (Table 111.1). Although estimates vary in this heterogenous group of conditions, a systematic review found that 12% to 23% of children with severe cerebral palsy suffer one or more fractures, with an annual incidence of 4% (Mergler et al., 2009). Unlike children without disabilities who commonly fracture their upper extremities, the majority of

fractures in nonambulatory children with disabilities are in the lower extremities. Further, fractures often occur with minimal trauma and may even go unrecognized if the child cannot communicate location of pain. Therefore clinicians must astutely consider an occult fracture when a child presents with irritability, feeding intolerance, and other unrelated symptoms.

The Role of Imaging to Screen for Fracture Risk The role of dual x-ray absorptiometry (DXA) in children with severe developmental disabilities and immobility is unclear. While some clinical care guidelines recommend use of DXA as a screening tool, there are limited data on how to interpret results and how these results inform management. Most nonambulatory children will have low bone mineral density; however, low bone mineral density alone in absence of a fracture history is not diagnostic of osteoporosis in youth, and this finding would not necessarily have clinical implications. DXA can be useful in the setting of a fracture history that is unclear, as well as in monitoring the effect of treatment. It is worth noting that hardware implants, hip dysplasia, neuromuscular scoliosis, contractures, and short stature can all present logistical challenges for both lumbar spine and distal femur DXA assessments. If DXA is performed, lateral distal femur or whole body are preferred. As research and clinical care evolve, there may be a more defined role for DXA to quantify risk for fractures in children with developmental disabilities, but at this time, imaging should be considered on a case-by-case basis. Peripheral quantitative computed tomography of the distal skeleton, such as the tibia, may prove to be more useful for risk stratification in this population; however, this is not yet clinically available at most centers. Management of Low Bone Mineral Density and Osteoporosis The primary management for addressing bone health in children with severe developmental disabilities is prevention by reducing the modifiable risk factors (see Table 111.1) (Ozel et al., 2016). Most of these risk factors are present early in life and therefore contribute to reduced bone mineral accrual throughout childhood and adolescence. In addition, minimizing fall risk, including seizure control and equipment for transfers, is important to prevent fractures. If osteoporosis is present and the risk for future fractures is deemed to be high, bisphosphonate treatment can be considered (Fehlings et al., 2012). Bisphosphonates inhibit bone turnover resulting in increased 1057

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TABLE 111.1  Risk Factors Threatening Bone Health in Children With Severe Developmental

Disabilities and Clinical Considerations for Minimizing These Risks

Risk Factor

Clinical Monitoring/Risk Reduction

Minimal/no weight bearing

Physical therapy; consider weight-bearing physical activity (although there is minimal supporting evidence)

Hypotonia or dystonia

Physical therapy

Feeding difficulties, malnutrition, gastrostomy

Optimizing nutrition to avoid over- or underfeeding; ensure appropriate micronutrient intake (Jesus & Stevenson, 2020)

Medication side effects   Antiepileptic drugs  Glucocorticoids   Loop diuretics   Proton pump inhibitors

Minimize polypharmacy when possible; attempt to reduce glucocorticoid dosing

Vitamin and mineral deficiencies   Vitamin D deficiency  Calcium

Dietician involvement to ensure the recommended daily intake of calcium and vitamin D are being met; measure serum 25-hydroxy-vitamin D and replace if low; consider 25 mcg vitamin D for all

Hormone deficiencies   Growth hormone deficiency   Sex steroid deficiencies

If appropriate for the clinical context, assess for hormone deficiencies and replace if present

Primary or secondary metabolic bone disorder

If low bone mineral density is present, assess serum calcium, phosphate, magnesium, parathyroid hormone, creatinine, and alkaline phosphatase as well as urinary calcium, phosphate, and creatinine

bone mass and presumably decreased fracture risk. However, there is limited research on long-term safety of bisphosphonates in pediatrics outside of the osteogenesis imperfecta population. In our clinical vignette EM has had one known long bone fracture in addition to multiple risk factors for low bone mineral density. Assessing for modifiable risk factors contributing to poor bone health is indicated, including measuring blood and urine biomarkers, encouraging weight-bearing physical activity, eliminating bone-toxic medications if possible, and considering replacing GH. If there is a history of more than one long bone fracture, DXA would be useful to quantify bone density to make the diagnosis of osteoporosis and consider whether she is a possible candidate for bisphosphonate treatment.

General Screening and Management Considerations of Endocrine Conditions for Children With Complex Medical Conditions Hypopituitarism Overview of the hypothalamic-pituitary-organ axes. Insults

to the central nervous system and genetic disorders can be accompanied by disturbances of the hypothalamic-pituitary axis (Table 111.2; Fig. 111.1). The anterior pituitary gland secretes hormones that regulate linear growth (GH), the thyroid gland (thyroid-stimulating hormone [TSH]), the adrenal cortex (adrenocorticotropic hormone [ACTH]), and the gonads (follicle-stimulating hormone and luteinizing hormone). For all of these axes, the end-organ hormone provides negative feedback at both the level of the hypothalamus and

the pituitary to ensure hormonal homeostasis. Congenital or acquired dysfunction of the hypothalamic-pituitary system can result in some or all of these axes being affected. Vasopressin, or antidiuretic hormone (ADH), is secreted by the posterior pituitary gland to maintain volume and salt homeostasis. Vasopressin acts on receptors in the renal collecting duct to increase renal reabsorption of water. Children with pituitary dysfunction can secrete too little ADH (diabetes insipidus), too much ADH (syndrome of inappropriate ADH [SIADH]), or a combination of both, depending on the clinical scenario. Symptoms of hypopituitarism.  In the newborn period hypopituitarism will often present with hypoglycemia from deficiency of ACTH and/or GH. Central hypothyroidism may be identified on newborn screening if a primary thyroxine screen is used; however, this can be missed if a primary TSH screen is used, as in many states. The absence of these early manifestations does not rule out hypothalamic-pituitary dysfunction, however. Additionally, pituitary deficiencies can develop long after the initial insult. Referral to endocrinology for assessment of pituitary function is indicated in numerous clinical scenarios (Box 111.1). Screening for pituitary dysfunction.  The best screening for GH deficiency is with measurement of serum insulin-like growth factor 1 (IGF-1), which is a product of the liver that can be measured at any time and does not depend on the pulsatile nature of GH. Random serum GH is almost never useful. A low IGF-1 alone is not sufficient to diagnose GH deficiency, however, particularly in young children or children who are underweight. Screening for central hypothyroidism should include free thyroxine (T4), as TSH is often inappropriately

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TABLE 111.2  Pituitary Hormone Deficiencies End Organ or Gland

End Hormone

Symptoms of Deficiency

Treatment

Adrenocorticotropic hormone

Adrenal cortex

Cortisol; androgens

Hypoglycemia, hypotension, fatigue, prolonged illnesses

Hydrocortisone

Thyroid stimulating hormore

Thyroid gland

Thyroxine

Poor growth, fatigue, constipation, dry skin

Levothyroxine

Luteinizing hormone, follicle-stimulating hormone

Gonads

Estradiol, progesterone; testosterone, inhibin B

Delayed puberty; amenorrhea (Calcaterra et al., 2019)

Estradiol, progesterone; testosterone

Growth hormone

Bone, soft tissues

--

Poor linear growth; hypoglycemia

Somatropin (GH)

Antidiuretic hormone

Kidney

--

Polyuria, polydipsia, hypernatremia

Desmopressin; chlorothiazide

Pituitary Hormone

BOX 111.1  Indications for Endocrine Referral for Evaluation of Pituitary Function • Radiologic evidence of an abnormal pituitary gland or features of optic nerve hypoplasia sequence • Poor growth velocity or height percentile >2 SD below midparental height percentile in absence of a genetic condition associated with short stature • Hypoglycemia • No breast development by age 13 or testicular enlargement by age 14 • Primary or secondary amenorrhea • Increased thirst and/or urination after diabetes mellitus is ruled out • Hyper- or hyponatremia • Recurrent hypotensive illnesses; “crashing” quickly when ill

Fig. 111.1 Primary organs and hormones involved in the hypothalamic-pituitary axes. The anterior (blue) and posterior (pink) pituitary gland secretes hormones into the systemic circulation in response to signals from the hypothalamus. Each of these hormones acts on the specific target glands/organs pictured. In many cases these target glands then secrete hormones that have physiologic actions throughout the body as well as provide negative feedback to the hypothalamus and pituitary gland. ACTH, Adrenocorticotropic hormone; ADH, antidiuretic hormone; FSH, follicle-stimulating hormone; GH, growth hormone; LH, luteinizing hormone; TSH, thyroid-stimulating hormone. * The color figure is available in the Online version.

normal in central hypothyroidism. Evaluation of the adrenal and gonadal axes is more complex and should be undertaken by an endocrinologist in most situations. If diabetes insipidus and/or SIADH is expected, first-morning fasting serum and urine sodium and osmolality can be obtained, but additional evaluation will likely be required for a definitive diagnosis. Management of pituitary disorders.  In most cases treatment of pituitary deficiencies involves replacing the end-organ hormone. Although all pituitary hormones play important roles in growth, health, and development, deficiency of ACTH resulting in adrenal insufficiency is the most serious of these and can be life threatening if not diagnosed and treated appropriately. Depending on the clinical situation, children with central adrenal insufficiency may or may not need daily (maintenance) corticosteroids, usually given as oral hydrocortisone in doses of 5 to 8 mg/m2/day. All children with central adrenal insufficiency require stress dose steroids in the setting of illness (e.g., fever, vomiting, diarrhea), significant injury (e.g., fracture, motor vehicle accident), and procedures requiring general anesthesia. Stress dose hydrocortisone dosing is 30 to 50 mg/m2/day. Children should have both enteral

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and parenteral hydrocortisone as well as an action plan on how and when to administer stress dose steroids. Central hypothyroidism is treated with oral levothyroxine titrated to maintain free T4 in the normal range. Hypogonadotropic hypogonadism is treated with gradually increasing doses of sex steroids (testosterone or estradiol) to induce secondary sex characteristics at a normal pubertal age. Most often this is via injections of testosterone for males and transdermal estradiol patch for females, although other formulations are available. Sex steroid replacement is continued after puberty is complete to maintain systemic health benefits, particularly bone health. GH deficiency is treated with daily subcutaneous injections of GH. The primary goal of treatment is to normalize linear growth velocity and ultimately adult height, which may not be an appropriate goal for some children with severe developmental disabilities who depend on others for transfers and care. GH plays a role in body composition and bone health as well, and although these outcomes have not been assessed in clinical trials, lower dosing may be used if height is not the primary goal. Aside from the rare case of GH deficiency causing hypoglycemia, GH treatment is optional, and the risks and benefits should be weighed on an individual basis. Management of diabetes insipidus can be the most challenging of all the pituitary disorders, particularly for children who do not have an intact thirst mechanism or cannot communicate their thirst. Desmopressin is synthetic ADH that acts on the vasopressin receptors in the kidney, resulting in water retention. The most serious side effect is the potential for severe hyponatremia if there is too much fluid intake while desmopressin is active. In children who have a liquid diet (formula, breastmilk) chlorothiazide may be preferred to reduce the risk of hyponatremia from inadvertently consuming too much fluid due to hunger rather than thirst. In our clinical vignette EM has a diagnosis of both central hypothyroidism and GH deficiency, but GH deficiency was not treated because height was not a priority for this patient. It may, however, be a modifiable risk factor contributing to her low bone mineral density, and a low dose of GH could be considered. Although she is stable on thyroid hormone replacement, ongoing endocrine care is warranted to ensure appropriate dose titration as she grows and monitoring for the development of other pituitary deficiencies over time.

Precocious Puberty The hypothalamic-pituitary-gonadal (HPG) axis is inactive until the onset of puberty, typically starting at 8 to 12 years of age for girls and 9 to 13 years of age for boys. If secondary sex characteristics present prior to age 8 for girls or 9 for boys, this is premature (or precocious) puberty. Central precocious puberty can be diagnosed if breast development or testicular enlargement is caused by activation of the HPG axis. Central precocious puberty is more common in children with abnormalities of the central nervous system, likely secondary to a loss of inhibitory signals that are usually present during

childhood. Left untreated, central precocious puberty will result in earlier fusion of the growth plates and shorter adult height (Bruzzi et al., 2017). Treatment of central precocious puberty is achieved with a gonadotropin releasing hormone agonist, either via injection or subcutaneous implant. Shared decision making should be used when determining whether to pursue treatment for central precocious puberty in children with severe developmental disabilities. Whether or not treatment is pursued, a brain magnetic resonance imaging to evaluate for new central nervous system pathology (e.g., tumor) as well as assessment of pituitary function are often indicated. Sometimes puberty signs occur in absence of activation of the HPG axis, called peripheral precocious puberty. In most cases peripheral precocity is benign and self-limited, but pathologic processes should be considered and ruled out. Anecdotally, early pubic hair development frequently occurs in children with severe neurodevelopmental disabilities. This usually reflects production of androgens from early activation of the adrenal glands (adrenarche) for reasons not fully understood. If premature adrenarche is isolated and is not associated with other pubertal signs, increased growth velocity, or advanced bone age, then observation is usually appropriate.

Concerns for Abnormal Growth Challenges with measuring height.  Linear growth in children is one of the most sensitive markers of overall health. Accurate height measurement is essential for evaluating growth velocity as well as calculating body mass index and surface area that are used to assess nutritional status and dose certain medications. However, obtaining accurate and reliable height measurements in children with developmental disabilities has many logistical challenges. The gold standard for height measurement is a wall-mounted Harpenden stadiometer, but this requires the child to be able to stand independently. Even if the child physically can stand, behavior or physical conditions such as scoliosis, contractures, and long bone deformities can lead to inaccurate height interpretations. There have been multiple methods proposed to measure height in nonambulatory children, including recumbent stadiometers, summation of segmental measurements, calculations based on lengths of particular body segments (i.e., tibial length), surrogate measurements such as arm span, and proprietary devices. Unfortunately, these methods require specialized equipment and/or training that is often not an investment primary care practices are willing to make, and as an unfortunate result, height is frequently not documented for nonambulatory children. Furthermore, these methods have wide limits of agreement with standing height in even typical children, so interpretation on standard growth charts should be cautioned. Nevertheless, accurate height measurement remains a crucial vital sign. Providers caring for children with developmental disabilities should prioritize standardization of height assessments in their practices by using consistent techniques and repeat measurements to improve accuracy. The method used should be documented in the child’s medical record to appropriately interpret measurements over time.

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BOX 111.2  Growth Charts for Specific

chromosome aneuploidies, Soto syndrome, Weaver syndrome, and others (Kamien et al., 2018).

Turner syndrome Down syndrome Russell-Silver syndrome Cornelia de Lange syndrome Rubinstein-Taybi syndrome Prader-Willi syndrome Williams syndrome 22q11 deletion syndrome Marfan syndrome Achondroplasia Quadriplegic cerebral palsy

Growth Attenuation Treatment

Conditions

Interpretation of height and linear growth.  Height should be plot-

ted on the appropriate sex-specific growth curve. For children with a known genetic condition associated with an alternative growth pattern, height can also be plotted on their conditionspecific growth curve, if available (Magic Foundation (n.d.); Box 111.2); however, these growth charts are often developed from small sample sizes and do not necessarily reflect optimal growth in these conditions. Interpreting whether growth is indicative of a pathologic etiology involves much more than a single height measurement. Growth velocity, or the change in height over a period of time, should be assessed (prepubertal children should grow 5–8 cm/ yr). If biological parents’ heights are available, midparental height should be calculated. Attention should also be paid to weight, head circumference, proportions, and body symmetry. Evaluation of abnormal growth. Children with unexplained abnormal growth should be evaluated to rule out pathologic causes, even if the family would not be interested in treating the height itself. Concerning growth patterns warranting evaluation include growth velocity less than 5 cm/year and/or height more than or less than three standard deviations from the mean (on the standard growth curves or syndrome-specific curves), and/ or projected adult height more than 4 cm above or below midparental height (Barstow & Rerucha, 2015). For both short and tall stature concerns, a radiograph of the left hand to estimate maturation of the epiphyses (bone age) can be helpful in narrowing the differential diagnosis as well as providing adult height prediction. Finally, review of the child’s medication list can reveal potential growth-restricting or -promoting side effects. Evaluation of short stature should screen for renal, hepatic, inflammatory, hematologic, and endocrinologic conditions. Typically, this includes a complete blood count, comprehensive metabolic panel, erythrocyte sedimentation rate, tissue transglutaminase, IGF-1, TSH, and T4. Depending on the presence of other signs and symptoms, syndromic short stature should be considered. Tall stature and/or increased growth velocity is less common but can also be pathologic. If linear growth is greater than would be expected for midparental height, an evaluation should be considered. Hyperthyroidism, GH excess, and precocious puberty should be ruled out. Tall stature in a child with neurodevelopmental delays should prompt evaluation for genetic overgrowth syndromes, including supernumerary sex

Growth attenuation refers to a treatment to prematurely fuse the epiphyses and reduce adult size. Growth attenuation treatment has been considered in situations when smaller stature would be in the best interest of a child with severe neurodevelopmental disabilities that are likely permanent and require lifelong support for all activities of daily living. This treatment is initiated prior to fusion of the growth plates, and the younger the child is when the treatment is initiated, the more effective it will be at reducing adult size. Growth attenuation treatment is not universally accepted largely because of ethical concerns about the autonomy of individuals with disabilities. A single, widely publicized case of a child who received treatment for growth attenuation treatment—accompanied by surgical removal of reproductive organs—resulted in a highly controversial climate that has led to many endocrinologists declining to consider growth attenuation treatment even without the removal of reproductive organs (Kerruish & McMillan, 2015). Though this view is gradually changing, there remains very little research to inform clinical care and a lack of standardized protocols (Allen et al., 2009). Growth attenuation is usually accomplished with high-dose estradiol in the form of oral (or g-tube) estradiol. Estradiol causes the bone age to rapidly advance, and epiphyseal closure typically occurs within 3 years, though this varies by the initial degree of maturation and interindividual variation in response to estradiol on epiphyseal closure. In addition to epiphyseal maturation, estradiol causes breast development, initial acceleration of growth, and (for girls) vaginal bleeding that can be stabilized with the addition of progesterone. Potential risks of high-dose estradiol include changes in clotting factors that may increase the risk of venous thrombosis, changes in liver enzyme activity potentially altering hepatic metabolism of medications, alterations in seizure pattern, and mood lability. Screening laboratory evaluation includes liver enzymes and clotting factors (protein S, protein C, antithrombin III), and these should be monitored before and during treatment. Epiphyseal maturation should be monitored by x-ray and treatment discontinued when epiphyses are fully fused. Caregivers should be made aware that the premature fusion of the growth plates is not reversible. In our clinical vignette EM has a congenital etiology of her neurodevelopmental disabilities and is likely to require lifelong full care for all activities of daily living. Her parents have expressed concern about safely being able to care for her as an adult, and she has already sustained a fracture during a transfer. She could be a candidate for growth attenuation treatment with highdose estradiol. Shared decision making involving her parents and medical providers should weigh the risks and benefits of this treatment option with the focus on EM’s health, wellbeing, and quality of life.

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GYNECOLOGIC MANAGEMENT OF ADOLESCENTS WITH DEVELOPMENTAL DISABILITIES For parents of children and adolescents with disabilities, puberty and the associated onset of menstrual periods may feel overwhelming. It is important for providers to monitor pubertal status and provide anticipatory guidance on the expected timing of menarche based on the initiation of puberty, which in females is caused by the onset of ovarian production of estrogen and the corresponding development of breast buds (Fig. 111.2). Providers should initiate an open-ended conversation about puberty and menses and offer counseling and resources as indicated (Table 111.3). Our clinical vignette is a scenario where parental education on the timing of puberal events and then reassurance that there are safe and effective options for menstrual suppression are indicated.

Menstrual Periods: Physiology and Assessment Ovarian estrogen is produced continually throughout the reproductive years and causes the lining of the uterus to become thickened and vascular. Progesterone, which causes the endometrium to stabilize and mature, is only produced

by the corpus luteum at the time of ovulation. When ovulatory menstrual bleeding occurs, it is primarily because of a drop in progesterone levels and an organized shedding of the endometrial lining ensues (Fig. 111.3).

Fig. 111.2  Timing of pubertal events in girls adapted from sequence of pubertal events in the average American girl. (From Tanner, J. M. [1975]. Growth and endocrinology of the adolescent. In L. I. Gardner [Ed.], Endocrine and genetic diseases of childhood and adolescents [2nd ed., p. 14]. WB Saunders.)

TABLE 111.3  Common Concerns About Puberty, Menses, and Adolescence Topic

Suggestions for Provider Counseling

Child is not ready “to grow up”

Education about the normal timing of pubertal events; reassure that physical changes are natural, healthy, and an essential aspect of human development. Empathize that the transition to adolescence may necessitate changes in many areas of patient-family life. Encourage caregivers to obtain the support they need, which may range from practical care-related concerns to emotional/social support.

Managing hygiene

Teens who can use the bathroom independently can learn how to use menstrual products. Menstrual underwear are an option for teens who cannot tolerate pads. There are safe options for menstrual reduction/suppression.

Caregiver discomfort with periods

Menstrual periods are a normal, healthy aspect of female development. All caregivers can learn how to help with hygiene when periods occur. There are safe options for menstrual reduction/suppression.

Sexual abuse

Awareness and communication about the potential for abuse among parents, caregivers, and the adolescent can be difficult but is essential.

Unplanned pregnancy

Developmentally appropriate sex education is necessary to provide adolescents and young adults with options to avoid unplanned pregnancy. Safe and effective methods of contraception are available.

Concerns about pain

Hormonal therapy is very effective at reducing menstrual pain. Maternal history of severe dysmenorrhea does not mean an adolescent will experience the same problem.

Worsening of seizures

Adolescence may be a time of increased seizure activity due to many factors. Adjustments in seizure medications may be needed. Once menarchal, hormonal therapy may be helpful for reducing seizures related to menstrual cycles.

Mood changes and irritability

Adolescence is a time of emotional and psychologic changes, in addition to physical ones. Address new behavioral and mental health issues that occur during the teen years; do not dismiss as unavoidable if they are significant to the patient and family wellbeing. Hormonal therapy is a treatment for premenstrual syndrome and may reduce other period-related concerns.

Adolescent sexuality

Sexuality is a natural and healthy aspect of human development. Education and communication about safety, privacy, and consent is an important aspect of sexual education.

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Fig. 111.3  Hormones and endometrium during ovulatory menstrual cycles.

Once menarchal, gynecologic history should be obtained as part of the medical history and include menstrual frequency, duration, and typical product use (ACOG, 2015; Box 111.3). Patients and families should be encouraged to track all menstrual bleeding and associated symptoms and notify their provider if abnormal bleeding or other issues occur. Although irregular menstrual cycles are common in adolescents, abnormal bleeding patterns may warrant evaluation or referral (ACOG, 2012; Table 111.4).

Menstrual Management There are many options for menstrual management in adolescents (Table 111.5). The key component of hormonal therapies is progestin, a synthetic version of the hormone progesterone, which causes the endometrium to become atrophic when given for an extended period of time. This atrophy results in decreased menstrual bleeding and pain, allowing for the safe reduction or suppression of menstrual bleeding. The most common side effect of all methods is unexpected bleeding, which in most cases resolves with consistent and continued progestin use; however, trial of several methods is commonly needed.

Prescribing Hormonal Therapy and Contraception There is no special testing or exam that needs to be done before prescribing hormonal therapy and/or contraception. Pelvic exams are not indicated for any screening purpose and should only be done to evaluate a complaint such as vaginal discharge or request for intrauterine device (IUD) insertion. Urine pregnancy testing is often done before initiating contraception as it is noninvasive, inexpensive, and easy to perform, but it is not required if the provider can be reasonably sure the patient is not pregnant. The best treatment option for menstrual management is the one that aligns with the goals of the patient and family, BOX 111.3  Normal Menstrual Cycles in Young Females Frequency: 21–45 days Duration: ≥7 days Menstrual product use: 3–6/day

as well as a consideration of safety given underlying medical conditions. The most commonly encountered medical contraindication is for estrogen-containing hormonal methods (combined oral contraceptive pills, patch, and ring). These methods slightly increase the risk of venous thromboembolism and deep venous thrombosis and should be avoided in patients with an existing risk factor for thrombophilia such as a known thrombogenic mutation or hypertension with vascular disease. The US Medical Eligibility Criteria for Contraceptive Use (USMEC) developed by the Centers for Disease Control and Prevention (CDC) is a free, easily TABLE 111.4  Menstrual Issues That May

Require Evaluation and/or Referral

History

Possible Evaluation/Reason for Referral

No menarche within 3 yr of thelarche

Assess for causes of primary amenorrhea.

No menarche by age 15 No period for >90 days, or >45 days if previously monthly cycles

Assess for causes of secondary amenorrhea.

Bleeding more often than every 21 days

Frequent and/or prolonged bleeding should be assessed with a complete blood count, Bleeding lasting >7 days ferritin, and pregnancy in a row test. Abnormal bleeding Heavy bleeding soaking in adolescents is due to pad/tampon every hour, anovulation, coagulopathy, or >8–10 products per pregnancy, or iatrogenic causes day (ACOG, 2015). Severe cramps Primary dysmenorrhea in teens immediately before and can be diagnosed based on during period history alone. Consider causes of secondary dysmenorrhea if patient does not respond to treatment. Noncyclic pelvic pain

Assess for gynecologic and nongynecologic causes of pain.

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TABLE 111.5  Options for Menstrual Management Treatment

Advantages

Considerations

NSAIDs Most common are ibuprofen and naproxen

Decrease blood flow and pain with periods Nonhormonal; can be used along with other methods Available OTC in pill and liquid forms

Can cause GI side effects Certain medical conditions may limit use

Combined hormonal contraception Methods that contain estrogen and progestin

Can use in traditional, extended, or continuous dosing to have monthly, seasonal, or no scheduled periods Improve acne and hirsutism

All combined methods increase risk of DVT/ VTE; avoid if known thrombophilia; refer to USMEC for contraindications Antiepileptic enzyme-inducing drugs may reduce contraceptive efficacy

1. Oral contraceptive pills

Pill each day, can be crushed; chewable pill available

Pill needs to be taken same time each day

2. Patch

Apply to skin each week

Avoid if patient will remove patch

3. Ring

Insert into vagina each month

Requires insertion into vagina, which may not be feasible

Oral progestins

Typically used in continuous fashion to suppress bleeding; do not contain estrogen; no increased risk DVT/VTE

Pill needs to be taken same time each day or breakthrough bleeding may occur

1. Norethindrone acetate 5 mg

Pill each day

Not an approved contraceptive

2. Medroxyprogesterone acetate 5–10 mg

Pill each day

Not an approved contraceptive

3. Progestin-only birth control pill

Pill each day

50% of users have breakthrough bleeding

Depot medroxyprogesterone acetate (DMPA) Injection every 12 wk

Does not contain estrogen; no increased risk DVT/VTE Option of SQ dosing in prefilled syringe for home use

Can be associated with decreased bone density and so may want to avoid when other risk factors present for bone concerns ACOG, 2016 May cause increase appetite and associated weight gain, especially in obese users

Subdermal Implant 4-mm flexible rod placed under the skin of the inner, upper arm

Excellent, long-acting contraception Easy to place and remove in office if patient is cooperative

Only 20% of users have amenorrhea so other methods should be offered if menstrual suppression is primary goal

Levonorgestrel-IUD T-shaped device that sits inside the uterus and releases progestin; FDA approved for 5 yr, but evidence-based guidance: 7 yr

FDA-approved treatment for menstrual bleeding and pain Excellent contraception in addition to menstrual control Insertion under anesthesia can be coordinated with other procedures

Insertion in the office may not be possible Misconceptions about safety may unfortunately limit use

DVT/VTE, deep venous thrombosis/venous thrombotic event; IUD, intrauterine device; NSAIDs, nonsteroidal antiinflammatory drugs; OTC, over the counter; SQ, subcutaneous; USMEC, United States Medical Eligibility Criteria for Contraceptive Use by the CDC

accessible, evidence-based tool to guide providers on the safety of methods in the setting of underlying medical conditions. The levonorgestrel IUD is an increasingly popular option that provides excellent long-acting contraception, menstrual reduction, and has very few medical contraindications.

Screening Recommendations Screening for cervical cancer, as with all screening tests, should be done after shared decision making and follow current recommendations. The US Preventive Services Task Force (https:// www.uspreventiveservicestaskforce.org/uspstf/) recommends cervical cytology alone (Pap smear) starting at age 21; however,

this guidance is likely to shift to human papillomavirus testing alone starting at age 25 based on new recommendations from the American Cancer Society (2020). Sexually active females should have screening for gonorrhea and chlamydia annually until age 25. This is usually done with a nucleic acid amplification test via a urine sample. All sexually active individuals should have a human immunodeficiency virus test at least once. Other sexually transmitted disease (STD) screening recommendations can be found at the CDC website (www.cdc.gov). The pelvic exam, even in sexually active patients, is not a screening test and should not be performed in the absence of a clear indication.

CHAPTER 111  Endocrine and Gynecologic Management of Children With Severe Disabilities

Contraception and STD Prevention Adolescents with disabilities may be sexually active and should be offered person-centered contraceptive counseling. Many birth control methods also offer noncontraceptive benefits, which are of interest to many users. Long-acting reversible contraceptives (IUDs and implants) have the highest satisfaction rates of all methods and are safe for almost all adolescents. In addition to an effective contraceptive method, condoms and recommended STD screenings are recommended to prevent sexually transmitted infections.

Treatments to Avoid Occasionally, families will be interested in suppressing menstrual periods before their onset. This is not recommended as menarche confirms that the genital tract is patent and that the hypothalamic-pituitary-ovarian axis is likely intact. Providers should address patient and/or parental anxiety about the first menstrual period and develop a definitive plan for menstrual suppression once menarche has occurred. Endometrial ablation, which is an outpatient procedure that burns or freezes the endometrial lining, is generally not recommended for women younger than age 40 due to the high likelihood of endometrial regrowth as well as the need for concomitant use of permanent sterilization. Tubal ligation is not considered a preferred option for contraception in young women as it offers no noncontraceptive menstrual benefits, and long-acting reversible contraceptive methods are equally or more effective and have no risk of regret. In addition, there is a long and problematic history in the United States of women who were sterilized without their consent or knowledge (ACOG, 2017). Finally, families may request hysterectomy to remove any potential for pregnancy and to stop menstrual bleeding. In patients with disabilities, indications for major surgical procedures are similar to those of other patients. Hysterectomy is not indicated for the sole purpose of pregnancy prevention and cessation of menstrual bleeding, given that less risky and effective treatment alternatives exist. However, significant gynecologic conditions may warrant consideration in certain circumstances. As with tubal ligation, there are prominent ethical and legal considerations in individuals with disabilities.

REFERENCES Allen, D. B., Kappy, M., Diekema, D., & Fost, N. (2009). Growthattenuation therapy: Principles for practice. Pediatrics, 123(6), 1556–1561. https://doi.org/10.1542/peds.2008-2951 American College of Obstetricians and Gynecologists. (2012). Diagnosis of abnormal uterine bleeding in reproductive-aged women. Practice Bulletin No. 128. Obstetrics and Gynecology, 120, 197–206. American College of Obstetricians and Gynecologists. (2014). Depot medroxyprogesterone acetate and bone effects. Committee Opinion No. 602. Obstetrics and Gynecology, 123, 1398–1402. American College of Obstetricians and Gynecologists. (2015). Menstruation in girls and adolescents: Using the menstrual cycle as a vital sign. Committee Opinion No. 651. Obstetrics and Gynecology, 143–146.

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American College of Obstetricians and Gynecologists. (2016). Menstrual manipulation for adolescents with physical and developmental disabilities. Committee Opinion No. 668. Obstetrics and Gynecology, 128, e20–e25. American College of Obstetricians and Gynecologists. (2017). Sterilization of women: Ethical issues and considerations. Committee Opinion No. 695. Obstetrics and Gynecology, 129, e109–e116. Barstow, C., & Rerucha, C. (2015). Evaluation of short and tall stature in children. American Family Physician, 92(1), 43–50. Bruzzi, P., Messina, M. F., Bartoli, A., Predieri, B., Lucaccioni, L., Madeo, S. F., … Iughetti, L. (2017). Central precocious puberty and response to GnRHa therapy in children with cerebral palsy and moderate to severe motor impairment: Data from a longitudinal, case-control, multicentre, Italian study. International Journal of Endocrinology, 2017, 4807163. https:// doi.org/10.1155/2017/4807163 Calcaterra, V., Cena, H., De Silvestri, A., Di Mitri, M., & Pelizzo, G. (2019). Disorders of puberty in severely neurologically impaired children: Is delayed puberty an underestimated problem? Frontiers in Pediatrics, 7, 462. https://doi.org/10.3389/ fped.2019.00462 Centers for Disease Control and Prevention. (2016). US medical eligibility criteria (USMEC) for contraceptive use. https://www.cdc. gov/reproductivehealth/contraception/mmwr/mec/summary.html Fontham, E. T. H., Wolf, A. M. D., Church, T. R., Etzioni, R., Flowers, C. R., Herzig, A., Guerra, C. E., Oeffinger, K. C., Shih, Y. T., Walter, L. C., Kim, J. J., Andrews, K. S., DeSantis, C. E., Fedewa, S. A., Manassaram-Baptiste, D., Saslow, D., Wender, R. C., & Smith, R. A. (2020). Cervical cancer screening for individuals at average risk: 2020 guideline update from the American Cancer Society. CA: A Cancer Journal for Clinicians, 70(5), 321–346. https://doi. org/10.3322/caac.21628 Epub 2020 Jul 30. PMID: 32729638 Fehlings, D., Switzer, L., Agarwal, P., Wong, C., Sochett, E., Stevenson, R., … Gaebler, D. (2012). Informing evidence-based clinical practice guidelines for children with cerebral palsy at risk of osteoporosis: A systematic review. Developmental Medicine & Child Neurology, 54(2), 106–116. https://doi. org/10.1111/j.1469-8749.2011.04091.x Jesus, A. O., & Stevenson, R. D. (2020). Optimizing nutrition and bone health in children with cerebral palsy. Physical Medicine and Rehabilitation Clinics of North America, 31(1), 25–37. https://doi.org/10.1016/j.pmr.2019.08.001 Kamien, B., Ronan, A., Poke, G., Sinnerbrink, I., Baynam, G., Ward, M., … Scott, R. J. (2018). A clinical review of generalized overgrowth syndromes in the era of massively parallel sequencing. Molecular Syndromology, 9(2), 70–82. https://doi. org/10.1159/000484532 Kerruish, N., & McMillan, J. R. (2015). Parental reasoning about growth attenuation therapy: Report of a single-case study. Journal of Medical Ethics, 41(9), 745–749. https://doi. org/10.1136/medethics-2013-101913 Magic Foundation. (n.d.). Website. www.magicfoundation.org/ Mergler, S., Evenhuis, H. M., Boot, A. M., De Man, S. A., BindelsDe Heus, K. G., Huijbers, W. A., & Penning, C. (2009). Epidemiology of low bone mineral density and fractures in children with severe cerebral palsy: A systematic review. Developmental Medicine and Child Neurology, 51(10), 773–778. https://doi.org/10.1111/j.1469-8749.2009.03384.x Ozel, S., Switzer, L., Macintosh, A., & Fehlings, D. (2016). Informing evidence-based clinical practice guidelines for children with cerebral palsy at risk of osteoporosis: An update. Developmental Medicine & Child Neurology, 58(9), 918–923. https://doi.org/10.1111/dmcn.13196

SECTION 11  Societal and Legal Contexts of Developmental-Behavioral Pediatrics

112 Social Inclusion Deborah M. Spitalnik and Dillon Reitmeyer For additional material related to the content of this chapter, please see Chapter 133

VIGNETTE “School is your first community. You can’t support social inclusion without inclusion for education,” said Rose, mother of Sadie, a 16-year-old emerging adult with Down syndrome, as she describes her family’s commitment to her daughter being included in their neighborhood school since kindergarten. First-time parents, Rose and her husband Bill, left Sadie’s first individualized education plan (IEP) meeting when she was 4 years old, intimidated, confused, with no idea what to do, and shaken by the recommendations of the 14 professionals sitting around the table. They were told Sadie could repeat a year in specialized preschool because she lacked skills or go to a special school a distance from where they lived or go to their neighborhood school. After consulting with their pediatrician and their developmental-behavioral pediatrician, Rose says, “We knew in our heart of hearts that she was going to go to the school in our town. You can’t start to be included at 21. There’s one Starbucks—not a regular one and a special one. How would she have learned to make a friend? How could Sadie have a community in our town if she was not here? All the things parents have to do to make inclusion happen is exhausting for families. The early guidance of Sadie’s developmental-behavioral pediatrician helped us pave the way for our daughter to be in the world.”

SOCIAL INCLUSION Social inclusion is participating in the life of the community with access to the same experiences as one’s age peers. The federal Developmental Disabilities Act and Bill of Rights Act of 2000, Public Law (P.L.) 106-402 enunciates that “[D]isability is a natural part of the human experience,” giving voice to social inclusion as the direction for practice, policy, and laws addressing people with intellectual and developmental disabilities (Developmental Disabilities Act and Bill of Rights Act of 2000, 2000). There is no singular law, intervention approach, or service model that defines social inclusion; it is a socially validated direction or presumption in many laws and service models. The evolution of social inclusion is iterative,

not linear. Social inclusion as a goal and a motivating construct continues to evolve from the interplay of advocacy, the knowledge base and evidence, and our understanding of how to provide intervention and support. Societal trends contribute to developments in the disability community, although progressive ideals and opportunities often accrue to people with disabilities later than those without disabilities, reflecting how society devalues people with disabilities. Even within the broad disability rights movement, people with early-onset disability have often been invisible (Shapiro, 1993). An examination of the past provides insight into the evolution of social inclusion and in many instances enhances its definition by clearly illustrating what it is not. Social inclusion as a paradigm repudiates outmoded and discredited beliefs and conceptions of children with intellectual disabilities as “God’s holy innocents,” having tendencies toward criminality, or as incompetents who are incapable of learning, productivity, or making contributions to their family or community. Past medical practices in counseling families at the birth of a child with Down syndrome or other apparent features of disability, “to not hold the child or take the child home that it would ruin the family,” advising mothers to “go home and get pregnant again” wounded families and disrupted the life trajectory of the family. Although many families did not heed this advice, state institutions did have nurseries where babies were placed at birth, leading to a life course of separation, segregation, and stigma—the antithesis of social inclusion. It is striking that no matter the age of the person with disabilities, parents’ memories of the way they were informed about their child’s condition and disability remain vivid. The obstetrician who stood in the hospital room doorway to tell a mother the baby she has just delivered had Down syndrome, providing no information, resources, or support, retreating to the nurse’s station to write discharge orders, and not returning to see the family again before they left the hospital with their newborn is one of many searing examples. Past practice isolated families: ignoring the emotional connection between mothers and fathers and their child and mitigating the possibilities for social inclusion. In our present context families tell us how positive messages from clinicians—genetic counselors, obstetricians, pediatricians, and nurses—support the embrace of the child as a beloved, valued member of the 1067

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family. Positive direct communication and information, linking parents to resources, connecting them to other families for parent-to-parent support, and providing opportunities for shared decision making, set the child and family on a life course to inclusion. The normalization principle, “utilization of means which are as culturally normative as possible, in order to establish and/or maintain personal behaviors and characteristics which are culturally normative as possible” (Wolfensberger, 1972), a foundational element of social inclusion was brought to the United States from Scandinavia. It is ironic and heartbreaking that the movement to social inclusion began as a reaction to the eugenics movement and the Nazi’s extreme ideology of racial purity, and ultimate outcome of euthanizing and exterminating children and adults with chronic illnesses, disabilities, and other expressions of human variation and difference (Holocaust Museum, 2009; Marwell, 2020). Responding to the imminent Nazi invasion in 1940 and aware of the mortal threat to people with intellectual disabilities, the Danish government decided to protect people living in congregate institutions, dispersing them to live with local families in communities in Jutland, the isolated northernmost tip of Denmark (Spitalnik & Rehfeld, 1988). Living in more typical environments, individuals began to express more skills, in effect demonstrating an increase in adaptive behavior. This first foray into social inclusion gave rise to the normalization principle: recognizing that living in human-scale environments, participating in the routines of daily life, and with support for access to typical experiences promotes positive outcomes. Social inclusion represents a paradigmatic shift in the aspirations and advocacy of people with disabilities and families, in how we provide care and support, and in how services are organized and funded. With the emergence and adoption of a new paradigm, it is challenging to see the world as it was in the prior paradigm. Evolving policies and service options that promote social inclusion often coexist with policies and services from the past, including segregated special education services or congregate residential placements. Changes in public policy and service systems are typically incremental, not transformative. Service systems tend to be mixed models with older services coexisting with newer, more inclusive options. Less inclusive services may be familiar to families and practitioners, and service systems may continue to promote these approaches. Even as paradigms evolve, funding may still incentivize older, less inclusive models. In public policy there is often a discrepancy between access to the new paradigm and persistence of the old. This gap between the ideal and the reality of implementation can be disillusioning and may lead to the rejection of the new paradigm as undesirable or unworkable. All children who are eligible for special education are now entitled to a free and appropriate public education (FAPE). Clinicians and families may not be aware that in the past children with disabilities were excluded from education. Social inclusion as a paradigm rests upon societal decisions: laws, attitudes, and funding. It is important to appreciate that societal commitment, the basis for social inclusion, may be fragile. Clinicians, advocates, and

policymakers must remain vigilant, advocating and applying evolving evidence to ensure that the rights and opportunities for children and adults with disabilities to be fully included in our communities are not abrogated.

AN ERA OF COMMUNITY MEMBERSHIP While individual actions may promote or mitigate social inclusion, the nature of services and supports available to people with developmental disabilities are highly determinative of the opportunities available for participation. Due to deteriorating and isolating conditions in large publicly funded institutions and advocacy from families and professionals in the 1960s and 1970s, states embarked on deinstitutionalization. These state efforts were often the result of class action lawsuits, including against Willowbrook in New York and Pennhurst in Pennsylvania. In deinstitutionalization children were typically moved out of institutions first, and further admissions of children were halted. Two major policy developments decreased the need and demand for institutional placement: the initiation of the Children’s Supplemental Security (SSI) program in 1972 and the Education of All Handicapped Children Act (P.L. 94-142) in 1975. In providing both income support and educational services, respectively, these programs facilitated the social inclusion of children within their families and communities. Social inclusion has only become possible within the present context, which has been described as an era of “community membership” (Bradley et al., 1994). Dating from the late 1980s, the idea of community membership means not only being physically present in the community but being connected and “of ” the community. The movement to social inclusion reflects our understanding that social inclusion is not just a location but rather being supported to participate in the community. As the baby boom increased the number of children born with disabilities in the post–World War II period, advocacy began with the voices of families. Since the early 1980s, the voices of individuals with disabilities themselves (i.e., selfadvocacy) have promoted social inclusion both as a right and as a direction for the development of services and supports. The civil rights movement has provided the template for inclusion for the disability community, based on the tenet first applied to race, that separate is not equal. There is no singular law or intervention approach or service model that defines social inclusion; rather, it is a preferred direction or presumption in many laws and service models. Social inclusion emerges across domains of life activity. Correspondingly, barriers to social inclusion can be environmental, physical, or attitudinal (Centers for Disease Control and Prevention, 2020). The socioecologic model of disability only began to be applied to disability services in the 1970s, contributing to the growth of early intervention services for infants and toddlers before they were legally mandated. For older children and adults, the socioecologic model was conceptualized as the developmental model. This model became the theoretical basis for the conceptualization of active treatment, a requirement for states to receive federal financial

CHAPTER 112  Social Inclusion

support to improve institutional conditions. This expanded long-term care funding under the Medicaid Intermediate Care Facilities (ICF) program to include state institutions. Applying the understanding of the nature of the interaction between the individual and the environment to individuals with intellectual disabilities began challenging the limiting construct of “ceilings of ability” described in diagnostic and classification systems for intellectual disability (Grossman, 1973). The concept that 25 years of age was the “life age” at which learning stopped and developmental attainment was fixed (Doll, 1953) was also discredited by the socioecologic model and our increased understanding of brain plasticity. The growing knowledge base in systematic instruction and the development and dissemination of behavioral approaches began to transform the education of children with disabilities and the nature of institutional and other residential services, contributing to the movement to smaller, community-based, more homelike settings in the 1970s. Applying a highly structured behavioral paradigm to tasks of complex assembly paved the way for employment becoming a path for adults with intellectual and developmental disability (Bellamy, 1976). The synergy between the role of evolving knowledge and intervention in creating opportunities for productivity, contribution, and more valued social roles, and the increasing attention to the rights of children and adults supported by advocacy, created the precursors to social inclusion. Support for participation is a hallmark of social inclusion. Early efforts to mainstream children in special education into general education settings without support for their learning needs and their participation as part of a classroom community were often unsuccessful. Children may have been physically present but lacked meaningful access to the curriculum or opportunities for reciprocal interactions with their age peers. Supports are the “resources and strategies that promote the development and interests of a person and that enhance an individual’s functioning and personal well-being” (Schalock et al., 2021). Supports can be described in both their intensity and duration, and who provides the support. Supports can include paid services, natural supports, and unpaid supports. The supports approach separates location (i.e., where the support is delivered) from the intensity of the support needs. Embedded in the idea of congregate institutions and other segregated settings (including classrooms) are assumptions that intense needs or needs for specialized expertise and services can only be delivered in specialized places, that individuals with high needs should be congregated to have their needs addressed, and that funding for services need be restricted to congregate settings. The ability to utilize Medicaid funding in the community was launched by the advocacy of Julie Beckett in 1980, who wanted her daughter Katie, who had extensive medical needs and was living in a hospital, to live at home and receive her high-intensity health services there. At that time, there was no way to pay for Katie’s services at home; Medicaid would only fund services in a hospital. Based on family advocacy, then-president Ronald Reagan granted an individual waiver for Katie’s care to be funded at home (Hevesi, 2012). This individual waiver

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of requirements was the first time Medicaid funding was permitted to be used in the community. The federal response to the individual circumstances of the Beckett family became a broad programmatic option and initiated waivers as policy changes making it possible to utilize Medicaid funding across programs and needs. This initial waiver to utilize Medicaid funds in the community rather than a hospital, nursing home, or congregate facility became a feature of Medicaid, eventually leading to Home and Community Based Services waivers, the major policy and fiscal underpinning for social inclusion. The Robert Wood Johnson Foundation, through Self Determination grants to states from 1995 to 2000, contributed to the experience and knowledge base in social inclusion by promoting person-centered practices, choice, and selfdirection as guiding principles for developmental disability service systems (Sunderland, 2007).

LEGAL FOUNDATIONS Social inclusion incorporates the ideal of social justice. The legal foundations for social inclusion are based on a rights framework, realized through protections against discrimination as well as more affirmative programmatic approaches.

Section 504 In 1973 Section 504 of the Rehabilitation Act, and now its successor legislation, the Workforce Investment Opportunity Act (P.L. 113-128), provided the first major legal protection against discrimination for people with disabilities (Workforce Investment Opportunity Act, 2014). Section 504, in prohibiting discrimination by entities receiving federal funds, was an important and enduring innovation. However, it does not address discrimination across society more broadly. Although often thought of in terms of adults and employment, Section 504 also applies to children because schools receive federal funds. By prohibiting discrimination, Section 504 made it possible for children and adults to be present and participating, a necessary but not sufficient condition for social inclusion. Section 504 introduced the concept of accommodations to support participation. As a tool or strategy for inclusion, accommodations have boundaries and limitations. Accommodations are required to be “reasonable accommodations” and not a “fundamental alteration” of a job, educational program, or setting. Accommodations apply only to an “otherwise qualified” individual, who is able to participate with “reasonable accommodation.” The definition and varying interpretations of these terms have been the subject of significant numbers of court cases and other forms of seeking redress, including changes in federal regulations, the instruments through which laws are implemented. Accommodations as an antidiscrimination tool in Section 504 provide the basis for the evaluation of learning needs and the development of a plan that includes due process elements. Section 504 for children does not require a diagnosis or disclosure of disability, but a request for accommodation(s), establishing Section 504 as a more inclusive option, depending on the extent of the learning difficulties and functional limitations of the child.

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The Americans With Disabilities Act

IDEA

The Americans with Disabilities Act (ADA; P.L. 101-336) was signed into law on July 26, 1990 (Americans with Disabilities Act, 1990). In this bipartisan legislation we see the most comprehensive enunciation of the rights of people with disabilities within federal law and the underpinnings for inclusion. Modeled on the Civil Rights Act of 1964 and prohibitions against racial discrimination, ADA extends to people with disabilities the finding that “separate is not equal.” ADA is organized into four titles: Employment Public entities (and transportation) Public accommodations (and commercial facilities) Telecommunications ADA addresses discrimination across settings and the domains of life that make participation and inclusion possible. Similar to Section 504, ADA relies on the idea of reasonable accommodations, not fundamental alterations. ADA and Section 504 have been utilized in complementary strategies to secure educational accommodations for students with disabilities, although ADA does not apply to the Individuals with Disabilities Education Act (Individuals with Disabilities Education Act, 2004). The impact of ADA is most visible in the built environment as public accommodations, including curb cuts, ramps, accessible restrooms, and building codes. Requirements for accessible medical equipment and provider settings, and accommodations for communication such as sign language interpreters, are also highly visible publicly and in health care environments. The impact of ADA in preventing discrimination and promoting or facilitating social inclusion has fluctuated over time. These fluctuations are a function of the implementation and enforcement of the discrimination protections by the federal government, the political orientation of the Executive branch and Congress, and a broad range of court cases variously seeking to limit or expand the protections provided by ADA. Lois Curtis and Elaine Wilson were two women institutionalized in Georgia who wanted to live in the community. Since Georgia already provided community services for some people with intellectual and developmental disabilities, a lawsuit was brought on their behalf based on discrimination under Title III, the public accommodation section of ADA. The US Supreme Court in 1999 in Olmstead v L.C. found that “unjustified isolation” and “unnecessary institutionalization are forms of discrimination” (Olmstead v L.C., 1999). Olmstead creates a legal standard for inclusion as part of publicly funded programs for people with disabilities. This court decision requires that states, which receive federal funding through Medicaid for developmental disabilities services, develop a plan to address this form of discrimination, but within the context of reasonable accommodation, not fundamental alteration of their service delivery systems. ADA and Section 504, by prohibiting discrimination, provide a legal foundation for social inclusion. Both laws, in facilitating community participation and the ideal of community membership to benefit individuals and society, represent incremental approaches but not complete transformation.

The Individuals with Disabilities Education Act (P.L. 108446) illustrates the role of education and its impact on the life course as a cornerstone of inclusion. IDEA is an affirmative programmatic strategy, not an antidiscrimination approach. The history of securing the right to a FAPE for children with disabilities, the provisions of IDEA as an entitlement, and how the law is implemented across the country demonstrate the interplay of successive strategies in enhancing the movement to inclusion. Through the early 1970s, Pennsylvania and other states restricted access to education based on a child’s level of functioning, invoking unfounded assumptions that only children at higher levels of functioning could learn or benefit from education. As an advocacy strategy with families as plaintiffs, the ARC of Pennsylvania sued the state of Pennsylvania over state law denying public education to children with disabilities (ARC of Pennsylvania v Commonwealth of Pennsylvania, 334 F. Supp. 1257 [E.D. Pa. 1971]). As an antidiscrimination case modeled on the 1954 Supreme Court decision based on race in Brown v Board of Education (Brown v Board of Education, 1954), this case asserted that separate education is unequal education. Although there were other court cases, including Mills v Board of Education of District of Columbia, which eventually went to the US Supreme Court, the ARC of Pennsylvania case was the first time legislation restricting education was struck down. The consent decree, a legally binding agreement between the plaintiff, the ARC of Pennsylvania representing families, and the defendant, the Commonwealth of Pennsylvania, became the framework in 1975 for P.L. 94-142, the federal Education of All Handicapped Children Act, and eventually IDEA. IDEA creates an entitlement based on these court cases and previous federal law to eliminate discrimination. This entitlement recognizes that all children can learn, that all children can have a right to FAPE, and that there must be dedicated funding to address FAPE. As an approach to protect rights through the provision of education, the elements of IDEA entitlement include a presumption toward inclusion. The Early Intervention Part C requirements in IDEA for children aged 0 to 3 years require the development of an individual family service plan (IFSP) and the delivery of early intervention services in “natural environments,” supporting the child within the context of the family in the home and other age-appropriate settings, including day care. For children ages 3 to 21 years, the provisions of Part B of IDEA represent tools for inclusion, including the “least restrictive environment” (LRE), and requirements for planning and services addressing transition to adult life to be embedded in the IEP beginning at age 16 years. The provisions of the 2002 federal No Child Left Behind Education Act were incorporated into IDEA, promoting access to the general curriculum and participation in standardized assessments for children with IEPs, potential levers for inclusion through education See Chapter 113 for additional information on IDEA.

Rosa’s Law The language and terms used to describe, categorize, and label disabilities have historically functioned as attitudinal barriers to inclusion. Section 504 addresses the power of language

CHAPTER 112  Social Inclusion

and the discriminatory attitudes it may engender. By broadening the definition of disability to include impairments that “substantially limits major life activities only as a result of the attitudes of others towards such impairment” (45 C.F.R. SSt; Brady et al., 2020). Section 504 recognizes that attitudinal barriers can contribute to mitigating participation and inclusion. Terms such as “feebleminded” and “mentally deficient” have been used clinically. Children in schools have been labeled by placement categories, including “educable, trainable and custodial.” As these labels have changed over time, they have found their way into colloquial usage as derogatory epithets or degrading humor. These terms have created and reinforced negative stereotypes of the capacities and humanity of people with the condition we now describe as intellectual disability. The stigma connected to these terms can be internalized and affect the self-esteem and quality of life of individuals with intellectual and developmental disability (Ali et al., 2012). The growth of self-advocacy as a movement in the late 1970s put forth the phrase “people first,” expressing the desire to be seen in terms of our common humanity, not as a condition. In some parts of the country the term became the name of self-advocacy groups. Advocacy by people with disabilities and by families (Ford et al., 2013) began a campaign to “End the R Word” in state legislation and policy. From 1997 through 2003, professionals from the American Association on Mental Retardation, American Psychological Association Division 33, and the Social Security Administration, as well as self-advocates and families, met as the Consortium on Language, Image, and Public Education. The consortium struggled to understand the nature of the pain of individuals who have the condition we now call intellectual disability, the role of stigma, and grappled with the concerns whether changes in terminology would threaten access to a vast web of programs and entitlements. Fueled by changes in a growing number of states, in 2010 P.L. 111-256 (Rosa’s law) became federal policy, eliminating the term “mental retardation” from social policy in favor of “intellectual disability.” It required continued advocacy to change the terminology in the Social Security Act as the basis for eligibility for disability benefits (Rosa’s Law, 2010; Friedman, 2016).

DILEMMAS OF INCLUSION The momentum toward social inclusion raises dilemmas for families, for emerging adults with disabilities, and for practitioners who walk alongside families and offer information, direction, and guidance. As with any shift in policy or service delivery approach, vision may outpace the realities of implementation, creating a gap between the ideal of social inclusion and available supports. There is also variability of opportunities across the country and within states and localities, with disparities in access and equity by zip code. Many families, as they seek FAPE to which their child is entitled under IDEA, struggle with educational placements and IEP goals. Are those things being offered to their child contributing to the life course and future they hope for their child? Do they have accessible and understandable

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information and meaningful support to explore possibilities? Families may feel faced with false dichotomies that juxtapose concentration on academics with life skills or social inclusion and participation within the larger school environment or the community. Severity of disability and level of functioning are sometimes illegally and inappropriately invoked as admission criteria to more inclusive options rather than facilitating inclusion for all students through higher intensity or more extensive supports. With any policy, there are often unintended consequences. The presumption in Part C of IDEA for early intervention services to be delivered in natural environments, empowering the family and supporting the child’s inclusion within the family, may contribute to family isolation. Prior to this shift toward natural environments, when early intervention was delivered in center-based programs, families had the opportunity to meet each other and be together at programs. This time together created reciprocal understanding and connection, often resulting in long-lasting peer support networks for families. The benefits for children of intervention in the natural environment may, at the same time, mitigate an important source of social inclusion for families. The loneliness of people with disabilities and the lack of friendships reported by Amado (2014) raise another imperative for social inclusion. Supporting and facilitating friendship and participation in activities of mutual interest, such as the integrated sports through Special Olympics, craft, hobby, or social clubs, often requires a high degree of planning, coordination, and support from families. As children get older, the developmental hallmarks of adolescence may make social inclusion challenging even for those young adults who have been fully included and supported through their earlier education. The opportunities for being part of an inclusive peer group may begin to diminish as life milestones: getting a driver’s license, dating, and growing in independence from the family are often less available to young adults with disabilities. For emerging adults who have IEPs, even if they graduate with their high school class, they and their family may elect to utilize their educational entitlement until age 21. Young adults may feel that everyone else is moving on and they are stuck or left behind, thus highlighting the need for postsecondary and college programs that enable young adults with disabilities, especially those in the 18- to 21-year-old range, to move into a valued future and prepare for careers. In emerging adulthood and the transition period understanding one’s disability, enhancing self-management, and learning to negotiate one’s support needs become more crucial. While social inclusion is based on an antidiscrimination and rights framework, the support of the skills necessary for participation, consonant with the individual’s needs, contributes to social inclusion. Community presence and participation is not a function of the individual’s functional level but rather the supports available. For parents, the transition from the entitlement under IDEA to eligibility for adult services is often described as “falling off a cliff.” For young adults, the loss of daily services and social interaction can feel isolating, with fewer opportunities for inclusion.

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The movement into the world of adult services, health care, and social life changes the role of families in providing care, support, and supervision to their children. Adult services often provide less intense supports than schools and services for children, paradoxically necessitating increased involvement and presence of families for coordination and support. Highly sensitive and often nuanced planning is required to promote social inclusion in the context of adulthood, ensuring adequate support for wellbeing, safety, and participation in a developmentally appropriate manner. Social inclusion also raises issues of our personal identity, our sense of identification, and belonging or difference. In any choices individuals or families make there are trade-offs. Who is our peer group? Are we the same or different than others and across what dimensions: race, abilities, gender, or interests? Judy Heumann, a disability activist who was deeply engaged in the passage of Section 504 and ADA, attended school in a regular/general education classroom. Having experienced educational and social inclusion, Heumann struggled with feelings of difference and invisibility. While validating the educational benefit of being included, in her recent autobiography Heumann wrote of the meaning of attending camp for teenagers with disabilities: “From my time at camp, though, I knew what it felt like to be treated like a regular girl” (Heumann & Joiner, 2020).

CONCLUSION The advocacy of families and people with disabilities challenged the history of segregation in disability services. Legislation and evolving practices recognize social inclusion as a right and the direction for policy and services, yet the experience of Sadie’s family (vignette) illustrates the dilemmas and obstacles many families encounter. Schools and other systems may continue to have the orientation that the services and supports need to be provided in special places, apart from the presence and experiences of one’s age peers. In how we listen, prescribe, guide, and support, we can reflect on the connections that we value in our own lives and enhance opportunities for belonging and full lives in the community for everyone.

REFERENCES Ali, A., Hassiotis, A., Strydom, A., & King, M. (2012). Self stigma in people with intellectual disabilities and courtesy stigma in family carers: A systematic review. Research in Developmental Disabilities, 33(6), 2122–2140. https://doi.org/10.1016/j. ridd.2012.06.013 Amado, A. (2014). Building relationships between adults with intellectual disabilities and community members: Strategies, art, and policy. Research and Practice in Intellectual and Developmental Disabilities, 1(2), 111–122. https://doi.org/10.10 80/23297018.2014.941968 Americans With Disabilities Act of 1990. (1990). P.L. 101-336 S. 933, 101st Cong. https://www.govtrack.us/congress/bills/101/s933 Bellamy, G. T. (1976). Habilitation of severely and profoundly retarded adults: Reports from the specialized training

program. Social and Rehabilitation Service. https:eric. ed.gov/?id=ED148528 Bradley, V. J., Ashbaugh, J. W., & Blaney, B. C. (1994). Creating individual supports for people with developmental disabilities: A mandate for change at many levels. Paul H. Brookes Publishing Co. Brady, K. P., Russo, C. J., Dieterich, C. A., Osborne, A. G., & Snyder, N. D. (2020). Eligibility and legal protections under Section 504 and the ADA: Legal issues in special education (pp. 231–247, 1st ed.). Routledge. https://doi.org/10.4324/9780429451492-13 Brown v. Board of Education. (1954). 347 U.S. 483. Centers for Disease Control and Prevention. (2020). Common barriers to participation experienced by people with disabilities. https://www.cdc.gov/ncbddd/disabilityandhealth/disabilitybarriers.html Developmental Disabilities Assistance and Bill of Rights Act of 2000. (2000). P.L. 106-402, S. 1809, 106th Cong. https://www. govtrack.us/congress/bills/106/s1809 Doll, E. A. (1953). The measurement of social competence: A manual for the Vineland Social Maturity Scale. Educational Test Bureau Educational Publishers. https://doi.org/10.1037/11349-000 Ford, M., Acosta, A., & Sutcliffe, T. (2013). Beyond terminology: The policy impact of a grassroots movement. Intellectual and Developmental Disabilities, 51(2), 108–112. https://doi. org/10.1352/1934-9556-51.2.108 Friedman, C. (2016). Outdated language: Use of “mental retardation” in Medicaid HCBS waivers post-Rosa’s law. Intellectual and Developmental Disabilities, 54(5), 342–353. https://doi.org/10.1352/1934-9556-54.5.342 Grossman, H. J. (1973). Manual on terminology and classification in mental retardation. American Association on Mental Deficiency. Heumann, J., & Joiner, K. (2020). Being Heumann: An unrepentant memoir of a disability rights activist. Beacon Press. Hevesi, D. (2012). Katie Beckett, who inspired health reform, dies at 34. New York Times. https://www.nytimes.com/2012/05/23/us/ katie-beckett-who-inspired-health-reform-dies-at-34.html Individuals with Disabilities Education Act. (2004). P.L. 108-446, H.R. 1350, 108th Cong. Marwell, D. G. (2020). Mengele: Unmasking the angel of death. W.W. Norton & Co. Olmstead v. L.C. (1999). 527 U.S. 581. Rosa’s law. (2010). P.L. 111-256, S. 2781, 111th Cong. https://www. govtrack.us/congress/bills/111/s2781 Rosemary F. Dybwad on normalization and self-advocacy (video recording). Schalock, R. L., Luckasson, R., & Tasse, M. J. (2021). Intellectual disability: Definition, diagnosis, classification, and systems of supports (12th ed.). American Association on Intellectual and Developmental Disabilities. Shapiro, J. P. (1993). No pity. Times Books. Spitalnik, D. M., & Rehfeld, B. (Eds.). (1988). Selections from an oral history of policy and advocacy in developmental disabilities as reflected in the lives and works of Elizabeth M. Boggs, Gunnar Dybwad and Rosemary F. Dybwad. University Affiliated Program, UMDNJ-RWJMS. Sunderland, A. (2007). Self-determination for persons with developmental disabilities. The Robert Wood Johnson Foundation. US Holocaust Museum. (2009). Deadly medicine. Author. Wolfensberger, W. (1972). The principle of normalization in human services. National Institute on Mental Retardation. Workforce Innovation and Opportunity Act. (2014). P.L. 113128, H.R. 803, 113th Cong. https://www.govtrack.us/congress/ bills/113/hr803

113 Education Law: Implications for Developmental-Behavioral Pediatrics Jeffrey Okamoto

For additional material related to the content of this chapter, please see Chapters 103, 104 and 112.

VIGNETTE Sarah’s mother raised concerns about her educational placement during her most recent well-child visit. Sarah is a 5-year-old girl with 47,XXX syndrome (trisomy X) who is about to start kindergarten. Three years ago, Sarah’s clinician diagnosed her with trisomy X syndrome after language delays and tall stature prompted genetic testing. Sarah’s mother contacted the state early intervention program through Part C of the Individuals with Disabilities Education Act (IDEA) at that time. Sarah was eligible for speech therapy, and her family started working with a therapist a few weeks later. When Sarah turned 3 years old, she was still behind in language and therefore participated in a preschool special education program sponsored by her school district. Her mother has been pleased with Sarah’s progress. She now has a large vocabulary, speaks in sentences, can use complex grammar, and participates actively in conversations. Her mother wants her to continue special education supports in kindergarten. The speech-language pathologist alerts her mother that her scores on the speech and language assessments are now in the low average range, making her ineligible for special education. She asks her clinician for advice. Returning to Sarah, the child with 47,XXX in the opening vignette, the clinicians on her team know that girls with this condition have highly variable developmental and behavioral outcomes. The health care clinicians cannot override the multidisciplinary team’s conclusion, though the clinician might consider a psychological assessment to ensure that the child’s intellectual abilities, academic skills, and behavioral profile confirm the school’s impression. If these assessments are confirmatory, then the clinician can play an important role in explaining to the mother why her child may no longer be eligible for special education services, despite qualifying at younger ages. The clinician can frame these findings as success, the child benefited from the early intervention and is now able to attend a general education setting without special services for kindergarten. However, Sarah remains at risk for the development of health issues, such as seizures, specific learning disabilities, and behavioral difficulties, such as extreme anxiety.The decision about special education can be revisited if any of these conditions compromise her learning in the future. In such cases the clinician might ensure that the family knows how to reinitiate a special education evaluation. The clinician may join the multidisciplinary team to advocate for appropriate services going forward.

OVERVIEW Education in the United States is an entitlement. All children living in the United States have the right to a free and appropriate public education (FAPE). Through years of collaboration and effort, advocates and professionals have worked with legislators and government agencies to champion educational rights for children with disabilities. This chapter focuses on educational rights in the United States and reviews education law using three organizing themes: special education, accountability, and civil rights. Chapters 103 and 104 provide additional practical guidance for readers.

SPECIAL EDUCATION: THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT History of IDEA In 1975 the US Congress passed the Education for All Handicapped Children Act (Public Law [P.L.] 94-142) (EAHC,1975), which mandated public special education services for children with disabilities. As noted in the law’s statement of findings and purpose, Congress recognized that the special educational needs of children with disabilities were not being met, and in fact many were systematically excluded entirely from public school systems. P.L. 94-142 resulted in major policy achievements addressing these issues and shaped educational rights in the United States. To obtain funding, states had to implement policies that assured all children with disabilities the right to FAPE, and local educational agencies had to maintain records of individualized education plans (IEPs) for children with disabilities. P.L. 94-142 created administrative procedures so that parents of children with disabilities could dispute decisions made about their children’s education. The law also codified the principle of least restrictive environment (LRE). LRE maximizes opportunities for participation in the school community and interactions with students without disabilities. As of the 2018–2020 academic year, more than 64% of children with disabilities are in general education classrooms 80% or more of their school day, which demonstrates the law’s impact (US Department of Education, 2021). Congress revised P.L. 94-142 in 1990, renaming it IDEA (1990), which has since undergone several reauthorizations and amendments; most recent is P.L. 114-95, the Every Student 1073

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Succeeds Act (ESSA, 2015). Clinicians can use knowledge of IDEA to advocate effectively for their patients’ educational rights. The next sections highlight important elements of IDEA.

Part B of IDEA As illustrated in the opening vignette, Sarah receives special education services from her local school district. The largest part of IDEA funding is allocated to Part B, Assistance for Education of all Children with Disabilities, which covers special education for children and youth with disabilities between the ages of 3 and 21 years. Part C of IDEA (discussed later) addresses services for children younger than age 3 years. IDEA requires that youth ages 3 to 22 years with a disability that affects school performance and learning receive special education services. IDEA outlines 13 disability categories that establish eligibility (Box 113.1). IDEA also allows states to use a nonspecific eligibility criterion, developmental delay, for children 3 through 9 years of age although not all states elect to use this category. Children who meet eligibility criteria must have an IEP that specifies the special education and related services that they should receive. Related services in IDEA include counseling services, sign language and cued language services, medical services that cannot be provided by the physician or hospital, one-on-one instructional aide, orientation and mobility services, various therapists, psychological services, therapeutic recreation, school nurse services, social work services, technologic devices such as special computers or voice-recognition software, and transportation. As noted, IDEA establishes the rights of children with disabilities to FAPE; however, “appropriate” can come into tension with “best.” The US Supreme Court, in Board of Education of the Hendrick Hudson Central School District v Rowley, 458 US 177 Board of Education v. Rowley, 1982, held that FAPE is satisfied when the school provides instruction individualized with enough support services to allow a child to benefit educationally. In other words IDEA requires that a child’s needs are met, which is not necessarily the same as providing optimal supports. An example is a child with spastic quadriplegia who requires a wheelchair for mobility and has a required BOX 113.1  Thirteen Disability Categories Specified in the Individuals With Disabilities Education Act Autism Deaf Deaf-blindness Emotional disturbance Hearing impairment Intellectual disability Multiple disabilities Orthopedic impairment Other health impairment Specific learning disability Speech or language impairment Traumatic brain injury Visual impairment

classroom on the second floor. The IEP must consider the disability and specify how the child will get to that classroom. This situation does not require the school to get an elevator because the legal requirement is for “reasonable accommodations.” The IEP team must indicate how the child will get to the classroom, whether this feat is accomplished by moving the classroom to an accessible first floor, getting an elevator, or having another appropriate way of helping the child to the second-floor classroom. Parents are a critical part of the IEP team, and IDEA establishes protective mechanisms for situations when parents and other advocates do not think that the school is providing FAPE. The due process clause guarantees an impartial hearing to resolve conflicts between the parents of children with disabilities and the school districts. Once the administrative efforts are exhausted, parents can still seek judicial review of decisions. LRE is another major policy achievement. IDEA establishes that children with disabilities should be educated with children without disabilities “to the maximum extent possible.” The goal of LRE is to maximize inclusion (see Chapter 112) and ensure exposure to educational material and interactions that may not be found in a more restrictive placement. Even when more restrictive settings are selected, the IEP must identify opportunities for the child with a disability to interact with peers without disabilities. Importantly, school systems must not make placement decisions based on their needs or available resources, including budgetary considerations and the ability of the school system to hire and recruit qualified staff.

Response to Intervention The 2004 reauthorization of IDEA allowed states to adopt service delivery models that focused on children’s response to scientific, research-based intervention (RTI). RTI emerged from research that found that different students experience learning difficulties for different reasons. Some children may have undiagnosed learning disabilities, other students may be acquiring English as a second language, and still other students may have frequent absences due to a medical condition. Academic difficulties may also have roots in pervasive racial and social inequities. RTI models are multitiered service delivery systems in which schools provide layered interventions that begin in general education and increase in intensity (e.g., increased time for instruction in smaller student groups) depending on the students’ instructional response. There are many approaches to the implementation of RTI models, which are best considered as a set of processes and not a single model. In most models children would need to fail several tiers of RTI before they would be considered for special education. This approach allows school districts to move away from eligibility criteria that rely on discrepancies between ability (i.e., IQ) and achievement. Instead, identification of a disability relies on inadequate instructional response and other criteria. Implementation of RTI continues to be controversial given the long-standing use of the discrepancy model in special education. Implementation of RTI has varied widely across states (Berkeley, Scanlon, Bailey, Sutton, & Sacco, 2020). While some

CHAPTER 113  Education Law: Implications for Developmental-Behavioral Pediatrics

states link their tiered approach with special education, others do not. Services for low-achieving and at-risk students can be supported with up to 15% of IDEA funds, so many states use these funds to support their RTI efforts (American SpeechLanguage-Hearing Association, 2021). While advocates hope that RTI models improve achievement and behavioral outcomes for many more students than can be served in special education, additional empiric investigation of RTI is still needed.

Part C of IDEA Part C of IDEA authorizes federal funding for early intervention services for infants and toddlers with disabilities ages birth to 3 years. In the mid-1980s Congress added Part C to enhance the development of infants and toddlers with disabilities, minimize the need for special education services, and maximize an individual’s long-term potential for independent living. Part C recognizes that the special needs of infants and toddlers require active engagement of the family and community. Early intervention particularly recognizes that care for infants and toddlers occurs in home and community

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settings, rather than schools. The inclusion of families as team members is critical in developing and implementing the individualized family service plan (IFSP) (Table 113.1). The IFSP might include services that increase family involvement, such as interpretation or transportation services. Although a child’s third birthday typically requires a transition from an IFSP (Part C) to an IEP (Part B), recent changes in IDEA allow states to continue early intervention services through an IFSP after 3 years of age until a child enters kindergarten, with parental approval. To be eligible for Part C early intervention services, children must be experiencing developmental delays, as measured by appropriate tests and procedures, in one or more areas of development, or they must have a condition that has a high probability of resulting in developmental delay. However, IDEA provides states with substantial discretion in defining eligibility criteria. As a result, eligibility criteria vary from state to state. The lead state agency for early intervention also differs across states (e.g., Department of Health, Department of Education). As a result, early

TABLE 113.1  Components of the Individualized Family Service Plan (IFSP) Component

Definition or Detail About the Component

A service coordinator

The professional responsible for program implementation

Necessary early intervention services

These are deemed necessary “based on peer-reviewed research to the extent practicable,” including the beginning date of services, length, duration, frequency, intensity, method of delivery, and location. Early intervention (EI) services include family training, counseling, and home visits; special instruction; speech-language pathology and audiology services, and sign language and cued language services; occupational therapy; physical therapy; psychological services; service coordination services; medical services only for diagnostic or evaluation purposes; early identification, screening, and assessment services; health services necessary to enable the infant or toddler to benefit from the other EI services; social work services; vision services; assistive technology devices and assistive technology services; and transportation and related costs that are necessary to enable an infant or toddler and the infant’s or toddler’s family to receive another service

Child’s present levels of development

In the following areas: physical (including vision, hearing, and health status), cognitive, communication, social or emotional, and adaptive

Family’s concerns, priorities, and resources

Around supporting the child’s development

Measurable results or outcomes expected to be achieved by the child and family

There should be procedures, criteria, and timelines in working on these outcomes

Provision of services in the natural environment

Natural environments are settings where young children without disabilities are typically found, or a justification of why services will not be provided in the natural environment

Other service needs, including medical

That are not required or funded under Part C

Payment arrangements, if any

Under IDEA, states may establish “family cost share” based on a sliding fee scale, but families cannot be denied needed services because of an inability to pay. Families may also be asked to allow the EI system to bill their public or private insurance to cover needed services. Child find services, evaluations and assessments, development and review of the IFSP, and service coordination are provided at no cost to families in all states and territories

A transition plan for services

This includes necessary transition steps and program options that must be written in the IFSP for children nearing 3 yr of age, not 9 mo before the third birthday

IDEA, Individuals with Disabilties Education Act.

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intervention statewide systems vary widely from state to state (see Chapter 103).

ACCOUNTABILITY: THE EVERY STUDENT SUCCEEDS ACT ESSA is a national education law that emphasizes equal opportunity and accountability. Congress first enacted ESSA as the Elementary and Secondary Education Act (ESEA) of 1965, and the law has since been reauthorized eight times, most recently as ESSA. As part of the Lyndon B. Johnson administration’s War on Poverty campaign, the law placed a major emphasis on providing equal educational opportunities for all children. This goal took the form of providing funds to districts serving children from low-income backgrounds. Specifically, Title I provides financial assistance to districts to support academic achievement among children from disadvantaged backgrounds. Reauthorizations in 2002 with the No Child Left Behind (NCLB) Act (2001) and in 2015 with ESSA placed a new emphasis on accountability. NCLB, which introduced accountability standards, had very strict rules that states had trouble meeting. ESSA sought to address many of the problems, including funding formulas that prevented schools (including those with the highest needs) from receiving funding because of overly strict rules. At the time of this writing, states have more flexibility on how to make improvements but are still accountable for performance measurements. Despite all the changes, including names, the main goal has been to improve the educational outcomes and increase educational opportunities for children living in poverty. States receiving funds must measure performance of schools using indicators such as academic achievement in reading and math and high school graduation rates. States are required to test students every year from third to eighth grade in reading and math and once in high school. They are required to test students in science once in elementary school, once in middle school, and once in high school. States must also identify the 5% lowest ranking schools (based on measurement of performance) and make comprehensive improvements with the highest level of supports (Education Post, 2021).

CIVIL RIGHTS: SECTION 504 OF THE REHABILITATION ACT OF 1973 AND THE AMERICANS WITH DISABILITIES ACT OF 1990 The Rehabilitation Act of 1973 (RA, 1973) has several sections that have implications for individuals with disabilities. Section 504 is the most pertinent to the educational rights of children with disabilities. Section 504 specifically prohibits discrimination against a person of any age with a disability, in any program or activity that receives federal funding, such as public schools. As such, children with disabilities

are entitled to accommodations that allow them to participate fully in school. For example, a child with cerebral palsy who requires a wheelchair for mobility and cannot access a second-floor classroom requires accommodations that ensure the child benefits from the services offered in that classroom. Parents and schools can work collaboratively to develop 504 plans that outline supports based on a child’s specific needs. Importantly, Section 504 does not provide any additional federal funds to assist with implementation because under this law the institution must use the funds already received without discrimination. In addition to public schools, Section 504 applies to colleges and universities, which are not covered under IDEA. Section 504 also extends to any private school that accepts federal funds. The Americans with Disabilities Act (ADA, 1990) prohibits discrimination against individuals with disabilities of all ages and in all areas, including employment, public services, and public accommodations, including schools. It covers all areas of public life, not only those receiving federal funding. As noted, IDEA uses a categoric definition disability (see Box 113.1). In contrast, Section 504 and ADA define disability generally, using a functional description of disability as being a physical or mental impairment that substantially limits a person in a major life activity (e.g., self-care, eating, standing, breathing, learning, reading, concentrating, and working). Conditions such as attention-deficit/hyperactivity disorder, asthma, and diabetes are covered under Section 504 and ADA if these conditions result in functional limitation. They may also be covered under the IDEA category of “other health impairment” if the health condition affects the child’s ability to benefit from the education program.

IMPLICATIONS FOR CLINICIANS Children with disabilities have unique educational needs. There are wide variations in manifestations and severity of disabilities; therefore each child with a disability requires an individualized program taking into account individual strengths and needs. Health care clinicians may provide the fundamental information for classifying a child into 1 of the 13 categories of special education, including autism, multiple disabilities, orthopedic impairment, or other health impairment, or traumatic brain injury. Psychologists may provide information documenting specific learning disability or intellectual disability. Other clinicians (audiologists, speech-language pathologists) may also provide information about deafness, hearing impairment, deaf-blind, and speechlanguage impairment. All of these clinicians may be called on for certifying what needs are present and what accommodations are most essential on the basis of those needs. As child health experts, clinicians can assist school personnel making connections between a child’s medical condition and educational needs, related services, and accommodations. Clinicians can play advisory, advocacy, and collaborative roles but should take care not to dictate or impose their own view of preferred educational methods.

CHAPTER 113  Education Law: Implications for Developmental-Behavioral Pediatrics

If a clinician suspects that a school is violating FAPE, LRE, or other educational rights, the clinican can support families and work collaboratively with educational advocates and/or attorneys, given the legal aspects and details of each regulation. The clinician can help parents obtain additional information from resources such as the Council of Parent Attorneys and Advocates or the National Disability Rights Network, which is the network for the state Protection and Advocacy (P&A) agencies (Table 113.2). Connecting parents to their state Parent Training and Information Center can

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also provide them with access to information and resources. In this way clinicians can help ensure all children access their right to an education. Clinicians play a critical role as family supports to document whether children are benefiting from educational programming. Health care clinicians and school-based professionals have different perspectives of the child and often have access to different sources of data. Clinicians may be more aware of a child’s behavior at home and in the community than are school personnel; school professionals may be

TABLE 113.2  Resources Regarding Early Intervention and Special Education Resource

Brief Description

URL

Parent Technical Assistance Centers

Information to support parents with children with disabilities

https://www.parentcenterhub. org/rptacs/

Early Childhood Technical Assistance (ECTA) Center

This center supports state Part C programs in “developing high-quality early intervention service systems … and enhancing outcomes for young children with disabilities and their families.”

https://ectacenter.org/

IDEA Infant and Toddler Coordinators Association

This organization also supports the exchange of inf ormation and ideas for Part C infant and toddler services.

http://www.ideainfanttoddler.org/

The IDEA Center for Early Childhood Data Systems (DaSy)

This center provides national leadership and technical assistance to states to support IDEA state programs in the development or enhancement of coordinated early childhood longitudinal data systems.

http://dasycenter.org/

National Center for Pyramid Model Innovations (NCPMI)

This center seeks to improve and support the capacity of state systems and local programs to implement an early childhood multitiered system of support to improve the social, emotional, and behavioral outcomes of young children with, and at risk for, developmental disabilities or delays birth to 5 yr.

https://challengingbehavior.cbcs. usf.edu/about/index.html

Research and Training Center (RTC) on Early Childhood Development

The RTC gathers effective early childhood intervention practices based on research.

http://www.puckett.org/ researchtrainingcenter.php

Center for Early Education and Development (CEED)

CEED’s mission is to improve developmental outcomes for children through applied research, policy, and professional development.

http://www.cehd.umn.edu/ceed/ default.html

Center on Enhancing Early Learning Outcomes (CEELO)

CEELO works to strengthen the capacity of state education agencies to lead sustained improvements in early learning opportunities and outcomes.

http://ceelo.org/

The Early Childhood Personnel Center (ECPC)

The ECPC is “focused on building awareness that an integrated, comprehensive system of personnel development (CSPD) for the early childhood (EC) workforce in every state …”

http://www.ecpcta.org/

National Professional Development Center on Inclusion (NPDCI)

The NPDCI works with states to ensure that early childhood teachers are prepared to educate and care for young children with disabilities in settings with their typically developing peers.

http://npdci.fpg.unc.edu/

Division for Early Childhood (DEC)

The DEC promotes policies and advances evidence-based practices that support families and enhance the optimal development of young children (0–8 yr) who have or are at risk for developmental delays and disabilities.

www.dec-sped.org/

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more aware of the child’s performance in the classroom and other school locations. Ideally, clinicians can work collaboratively with parents and school professionals so that children with disabilities are able to maximize their functioning across all settings.

REFERENCES American Speech-Language-Hearing Association. (2021). Overview of funding for prek-12 education. https://www.asha.org/ advocacy/schoolfundadv/overview-of-funding-for-pre-k-12education Americans With Disabilities Act. (1990). P.L. 101-336. Berkeley, S., Scanlon, D., Bailey, T. R., Sutton, J. C., & Sacco, D. M. (2020). A snapshot of RTI implementation a decade later:

New picture, same story. Journal of Learning Disabilities, 53(5), 332–342. https://doi.org/10.1177/0022219420915867 Board of Education of the Hendrick Hudson Central School District v. Rowley. (1982). 458 US 177. Education for All Handicapped Children Act. (1975). P.L. 94-142. Education Post. (2021). The ABC’s of ESEA, ESSA and No Child Left Behind. https://educationpost.org/the-abcs-of-esea-essa-andno-child-left-behind/ Elementary and Secondary Education Act. (1965). P.L. 89-10. Every Student Succeeds Act. (2015). P.L. 114-95. Individuals with Disabilities Act. (1990). P.L. 101-476. No Child Left Behind Act. (2001). P.L. 107-110. Rehabilitation Act. (1973). P.L. 93-112. US Department of Education. (2021). About IDEA. https://sites. ed.gov/idea/about-idea/

114 Health Care Systems for Children With Disabilities Justin Charles Schwartz and Laura Joan McGuinn

For additional material related to the content of this chapter, please see Chapters 10 and 15.

VIGNETTE Justice was born with congenital anomalies but no identifiable genetic cause. She required a gastrostomy tube, ileostomy, central line for total parental nutrition (TPN), and urinary catheter, and help with all her activities of daily living, mostly provided by her family, until her death at age 11. In a moving blog post (Coleman, 2019) Justice’s mother, Cara Coleman, eloquently chronicles the realities of navigating a fractured system inadequately designed to meet the needs of children with disabilities. She describes several examples of avoidable harm from health care, such as Justice’s leg being fractured by a nurse who refused to listen to her stretching and splinting instructions, an injury from a catheter that she tried to warn was being incorrectly inserted, the many months she spent to uncover an insurance coding error to be able to continue Justice’s costly TPN, and the countless hours coordinating care between Justice’s many specialists. Justice’s story helps to personify the avoidable harm and fragmented care experienced by children with disabilities and their families. It also illustrates the disproportionate financial burden and limited decision-making contribution families are offered when raising one of the estimated 5.6 million US children with disabilities as they deliver approximately 1.5 billion hours of unreimbursed family-provided health care at home each year (Romley et al., 2017). As Ms. Coleman wrote, “Family caregivers are public health workers. Yet, families and family-led organizations struggle to be recognized as part of care teams and to be authentically regarded as equal colleagues. While increasingly invited to provide input, families remain tokenized and invisible.”

INTRODUCTION This chapter builds upon Justice’s story and others like hers to describe important concepts in health care for children with disabilities. Justice’s experiences provide an understanding of how the health care system currently operates and highlights opportunities for improvement to achieve a system that better serves children with disabilities and their families. The chapter highlights persisting inequities

in health care access, endured disproportionately by individuals experiencing poverty and who belong to marginalized racial and ethnic groups, as well as opportunities for improvement. While health systems vary widely across the world in terms of professional roles, delivery systems, and funding/finance mechanisms, this chapter focuses on the US health care system as it pertains to children with disabilities. See Chapter 10 of this book for a discussion on transition to the adult health care system.

GOALS OF THE HEALTH CARE SYSTEM Historically, the health care system has focused on finding a diagnosis that explains a patient’s chief concerning symptoms, and subsequently “curing” or reducing the burden of sickness or disease associated with that diagnosis. The classic image of doctors and nurses working in clinics, hospitals, and visiting homes of patients on house calls defined the concept of health care. This image influenced the development of many systems and processes within health care that remain today, such as fee-for-service payment structures linked to illnessfocused diagnostic codes, insurance reimbursement policies that favor procedure-based services, funding structures for hospitals and acute and chronic care facilities, and differences in approaches to physical versus mental health care. The World Health Organization (WHO)’s seminal Alma Ata Declaration of 1978 reflected consensus that health is a human right based on the principles of equity and community participation (Rifkin, 2018). Over the subsequent decades, health care systems have grappled with how to implement the holistic charge of the Alma Ata Declaration, particularly as the complexity of patients’ various needs has increased. Children with disabilities who generally require more frequent and complex care are one of the populations for which this holistic charge is key, yet also for whom it remains incompletely realized. Wagner’s care model (initially called the chronic care model) gives a framework for how health systems can operationalize the values from the Alma Ata Declaration. The care model demonstrates how health care can function within a larger ecosystem to achieve optimal health outcomes. Initially designed to target particular adult patient populations (e.g., with asthma, obesity, diabetes) and later broadened to apply to adults with medical complexity of any type, and then adapted for children with disabilities (Fig. 114.1), the care model 1079

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Fig. 114.1  Wagner’s care model adapted for children with disabilities. (From Feldman, H. M. [2013]. Redesigning health care for children with disabilities: Strengthening inclusion, contribution, and health. Paul H. Brookes Publishing Co.)

emphasizes four core assertions: (1) increasing clinicians’ expertise and skill, (2) educating and supporting patients and families, (3) making care delivery team based and more proactive, and (4) making better use of registry-based information systems. To do so, it relies on four components (Adams & Woods, 2016; Wagner et al., 2001): • Delivery system design: interventions to promote proactive/planned care, accessibility, and team-based care • Clinical decision support: interventions to reduce variations in care, increase adherence to guidelines, and increase accessibility of specialist expertise • Clinical information systems: use of information technology to support population management, monitor change implementation • Family and self-management support: interventions to facilitate patient self-monitoring, treatment adherence, healthy lifestyle decisions, and positive coping skills The care model highlights the role of the community to support, inform, and engage individuals, giving them more power to advocate for and improve or maintain their health. It asserts that resources such as community programs, social support networks, and community extensions of health care teams, as well as policies to enable full community integration and participation, must be in place to sustain health outcomes. Similarly, within the health system itself, all regulatory, organizational, financial, and policy features must align to allow and sustain the four core components of the model. Children with disabilities require such coordinated and well-organized care to achieve optimal health and wellbeing. To that end, Feldman (2013) outlined three main goals of the health care system for children with disabilities: (1) inclusion in family life, school, workplace, and community life, (2) contribution to their families, schools,

workplaces, and communities, and (3) health (physical, social, and emotional) to maximize inclusion and contribution. Application of the care model to support these goals opens the door to understanding the opportunities for reshaping the health care system to provide higher quality care and greater value to individuals with disabilities.

Quality and Value of Health Care Improving the quality of the care delivered by the health system has been a major focus since the National Academy of Medicine (formerly the Institute of Medicine [IOM]) published two seminal reports, To Err Is Human (IOM Committee on Quality of Health Care in America, 2000) and Crossing the Quality Chasm (IOM Committee on Quality of Health Care in America, 2001). By exposing the tragic magnitude of medical errors, many of which were due to potentially avoidable care process design flaws, these reports charged all care providers with the fundamental requirement to achieve better outcomes through the continual improvement of health care delivery. To that end, the IOM defined quality health care as care that is safe, effective, patient centered, timely, efficient, and equitable. While these quality metrics are essential to reduce unnecessary harm, waste, and costs associated with health care, many of which are process oriented, they may not translate directly to improved health outcomes for children with disabilities. For example, timely evaluation, diagnosis, and medical treatment of a school-age child with complex attention-deficit/ hyperactivity disorder will not guarantee improved health outcomes if the child’s resource-poor school and community struggle to implement interventions and accommodations to support this child’s social, emotional, and academic success. Thus the concept of value emerges distinctly from quality, yet the two are linked. Simply put, value is defined as

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health outcomes achieved per dollar spent (Porter, 2010). Whereas quality may be process focused, value emphasizes achievement of outcomes that are most important for the patient and family. In other words value is measured by outputs, not inputs. Quality improvement initiatives importantly help decrease unnecessary costs and harms to increase value. Measuring value requires adequate measurement of both outcomes and costs to achieve those outcomes. While measuring costs is a more concrete, albeit complex task, operationalizing outcomes to enable measurement has been a persistent challenge, particularly in the field of developmental-behavioral pediatrics. The International Classification of Functioning, Health, and Disability (WHO, 2014) and related functional skills frameworks provide a strong foundation for developing outcomes that can span the range of disability; however, adequate outcomes measurement must take into account the priorities of individuals, families, and experts, and consider the unique needs of those with specific disabilities or developmental-behavioral conditions (e.g., autism). Additionally, appropriate value measurement must account for all components of health care that contribute to the desired outcome, beyond simply the efforts of the physician, hospital, or clinic team, or other facets of the classical health care system; all other services that meet the needs of the patient must be considered as well (Porter, 2010; Sandler, 2019a, 2019b).

ACHIEVING THE GOALS OF THE HEALTH CARE SYSTEM FOR CHILDREN WITH DISABILITIES Access to Care Despite recognition of health care as an essential human right, in the United States, access to health care depends on (1) access to and enrollment in a health insurance plan, (2) adequate and continuous coverage of necessary services, and (3) availability of qualified clinicians (Chung & Schuster, 2004). High uninsured and underinsured rates, interruptions in insurance coverage, variability in generosity of benefits among plans, and unequal distribution of resources geographically and among different population groups lead to inequitable access to health care. Furthermore, these inequities disproportionately affect the most vulnerable, such as historically marginalized racial and ethnic minority groups, those in poverty, immigrants, children in foster care, and children and adults with disabilities. Despite the skyrocketing per capita health expenditures that far exceed all other countries who have universal access, the US population experiences poorer return on investment according to many quality and outcome measures, and, with problematic overrepresentation among those in poverty, minoritized and immigrant groups, and individuals with disabilities (Mossialos, Djordjevic, Osborn, & Sarnak, 2017).

Health Insurance and Financing Private insurance.  Private insurance is the predominant form of coverage in the United States, with over half of adults and children, including those with disabilities, covered primarily

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through employer-sponsored policies (Cohen & Terlizzi, 2020). The remaining portion of the population have either public insurance, a combination of private and public coverage, or no coverage (Cohen & Terlizzi, 2020). US public insurance programs are organized by specific populations and include Medicare for adults aged 65 and older, federal employees, military members, veterans, and people with low income, including Medicaid and the Children’s Health Insurance Program (CHIP). Also, while not an insurance program per se, the US Indian Health Service provides access to health care for individuals who are federally recognized American Indian and Alaska Natives. Medicare and Medicaid.  In 1965 recognizing that employersponsored health care insurance was not available to the elderly or individuals with low income, Congress passed the Social Security Act, which enacted two federal health care insurance entitlement programs, Medicare and Medicaid. Medicare is federally funded hospital insurance plus subsidized medical insurance provided to all US citizens age 65 and older, whereas Medicaid covers children and adults with low income. Medicare is primarily for older adults, although it does cover adults younger than 65 with disabilities as well as children and adults younger than 65 with end-stage renal disease who are receiving dialysis or have had a kidney transplant. Medicaid allocates federal tax dollars to each state with a state match that varies based on each state’s relative per capita income. Some states have expanded Medicaid to cover all adults below a certain income level. Medicaid waivers and demonstrations. (CHIP) Approximately 1.7 million children qualify for Medicaid coverage through a disability pathway rather than an income-based pathway (Musumeci & Chidambaram, 2019). Medicaid Home and Community Based Services (HCBS) waivers (also known as 1915[c] waivers as they are authorized under that numeric section of the US Social Security Act) give states the option to expand eligibility to cover individuals who would otherwise be likely to require institutionalization regardless of family income level (National Academies of Sciences Engineering and Medicine, 2018). Katie Beckett and TEFRA (the Tax Equity and Fiscal Responsibility Act of 1982 [Public Law (P.L.) 97-248 §134]) waivers are HCBS waivers that cover children with disabilities through age 19 years (Catalyst Center, 2012). Waiver programs targeting people with intellectual or developmental disabilities comprised the largest number of Section 1915(c) waiver programs and the greatest share of spending (72%) across all long-term service and support population groups in Medicaid in fiscal years 2014 through 2016, the most recent years of analysis (Eiken, Amos, Sredl, & Saucier, 2018). Like waivers, Medicaid’s Money Follows the Person (MFP) demonstrations provide states the ability to help people with disabilities and seniors move from institutions to the community. MFP, begun in 2007 and recently extended by Congress in 2020 for 3 more years, gives enhanced federal matching funds to states to provide services and supports to eligible individuals (Medicaid, n.d.b). Children’s Health Insurance Program (CHIP).  Recognizing a lack of insurance coverage for children whose family income was

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too low to afford private coverage but too high to qualify for Medicaid, Congress passed CHIP, which began in 1997. Like Medicaid, CHIP provides federal matching funds to states to provide health coverage to children. All states have CHIP programs, and most cover children up to at least 200% of the federal poverty level ($53,000 for a family of four in 2021) (US Department of Health & Human Services Office of the Assistant Secretary for Planning and Evaluation, 2021). Unlike Medicaid, which is an entitlement and therefore obligated to cover all individuals who apply and meet the required income level for eligibility, with CHIP, states have the option to stop enrolling children once they exhaust a maintenanceof-effort dollar amount annually (Catalyst Center, 2017). Like Medicaid, CHIP covers routine preventive health care and dental visits, but families may have copayments for other services. Some states charge a monthly premium for CHIP coverage. The premiums differ by state, but they cannot exceed more than 5% of a family’s annual income. Medicaid and CHIP together cover about a third of the country’s children and almost half (47%) of the estimated 13.3 million children with disabilities in the United States (Musumeci & Chidambaram, 2019). The Affordable Care Act (ACA). Additional publicly subsidized private insurance came into being with enactment of the ACA (P.L. 111-148) in 2010 (Feldman, Buysse, Hubner, Huffman, & Loe, 2015). The ACA created the Health Insurance Marketplace, also known as Exchanges, which offers individuals the option to purchase governmentsubsidized private insurance plans at a cost based on their income. As of this writing, about 1% of US children obtain private coverage through Exchanges. More importantly, other stipulations in ACA improved access for children with disabilities by limiting exclusion of preexisting conditions and extending the age through which children could remain as dependents on their family’s policy.

Other Funding Sources That Promote Access to Health Care Supplemental Security Income (SSI). SSI is administered through the US Social Security Administration (SSA) and provides minimum basic financial assistance to older adults and persons with disabilities (regardless of age) with very limited income and resources. Federal SSI benefits from the SSA are often supplemented by state programs. In most states an SSI recipient will automatically qualify for Medicaid, especially for children with disabilities who are disproportionately represented in lower-income populations in the United States and therefore more likely to meet the SSI income eligibility criteria. Title V Maternal and Child Health (MCH) Program.  The US SSA Title V MCH block grant includes a focus on children and youth with special health care needs (CYSHCN). The Title V CYSHCN program is an important resource that influences and monitors access to health care and other services for mothers and children, including children with disabilities. States use these block grant funds in various ways: some use them to deliver direct care to women and children, others

fund targeted prevention services (e.g., maternal early infant and childhood home visiting programs). For more information on how states organize MCH Title V CYSHCN resources, see https://mchb.tvisdata.hrsa.gov/.

Achieving a Better Life Experience (ABLE) savings accounts.  Created through the US federal Stephen Beck, Jr.

Achieving a Better Life Experience Act of 2014 (hence the acronym ABLE), accounts are noninsurance-based, taxadvantaged savings accounts for individuals with disabilities and their families (The National Disability Institute, n.d.). Families can use these accounts to fund disability expenses. In 2020 ABLE accounts had a $15,000 calendar year limit, but also allowed additional savings for working individuals. Interest income earned in these accounts is not taxed. ABLE accounts allow families to deposit savings, but those savings do not count in the income calculations that determine eligibility for public benefits, including Medicaid. Eligibility is limited to individuals with disabilities with onset before turning 26 years old and who meet certain income criteria. Individuals who receive SSI or SSDI are automatically eligible to establish an ABLE account. Special needs trusts.  To qualify for certain government benefits, such as Medicaid and SSI, an individual generally cannot own more than $2000 of assets. Special needs trusts are designed to protect the assets of a person with disabilities, while still allowing that individual to receive government benefits.

Adequacy of Insurance Coverage for Children With Disabilities Benefits Private insurance benefits vary widely between payers, and even between the same payer’s various policies. Some private insurance plans provide comprehensive benefits that are comparable to those mandated through Medicaid (described in the next section). Other private plans require high deductibles and out-of-pocket expenses for families, which may impede realization of benefits. Further, while private insurance may cover rehabilitative services for acquired disabilities, many policies exclude coverage for habilitative therapies for developmental disabilities. For example, TRICARE (insurance coverage for US military members and their families) and many private policies exclude diagnostic evaluation, treatment, and services or supplies for most developmental language and learning disabilities (i.e., developmental delay, intellectual disabilities, dyslexia, developmental mathematics disorders, developmental language disorders, and developmental articulation disorders). Medicaid and CHIP benefits are important to understand, as almost half of all US children with disabilities rely on Medicaid as an important source of coverage (Musumeci & Chidambaram, 2019). For Medicaid, within broad federal guidelines, states determine the type, amount, duration, and scope of services they provide. An exception is Medicaid’s early periodic screening, detection, and treatment (EPSDT) services for children. EPSDT provides all medically necessary services for children through age 21, even if that service is not included in the state’s Medicaid plan. For example,

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even though many states do not include dental or pharmacy benefits for adults who receive Medicaid, EPSDT covers these for children. CHIP gives states the choice to add EPSDT as an optional benefit for children enrolled in CHIP. In states that expand Medicaid with CHIP funds all children must receive EPSDT. In the early 2000s in the United States parents of children with autism began a grassroots movement to urge legislators to pass mandates requiring insurers to cover diagnostic and treatment services for autism spectrum disorder (ASD). The first ASD insurance mandate was passed in 2001 (in Indiana), and by 2019, when the last state, Tennessee, passed its law, all 50 states and the District of Columbia had ASD mandates (Callaghan & Sylvester, 2019). Benefits vary widely between the states due to an interesting array of political forces that shaped the patchwork of coverage that exists today. Policy analysts note that ASD mandates have resulted in only slightly more children getting treatment and somewhat more treatment for those already receiving treatment. Reasons for the modest overall improvements in access include limits imposed on the maximum age of eligibility, lifetime dollar amounts, and/or number of sessions covered that many states specified in their mandates, as well as the insufficient supply and uneven geographic distribution of certified therapists (Mandell et al., 2016).

Continuity of Coverage As part of its effort to foster a high-functioning community-based system of services for CYSHCN and their families that began in the late 1980s, the US Maternal and Child Health Bureau (MCHB) included continuity of health insurance coverage over the previous 12 months as a core indicator (Honberg, McPherson, Strickland, Gage, & Newacheck, 2005). Based on parent surveys, they have found interruptions in continuity. As with other access indicators, significant disparities in continuity of coverage persist based on race, ethnicity, immigration status, language, socioeconomic status, and functional limitation.

Delivering Health Care Primary Care Medical Home All children require access to regular primary health care. The IOM defined primary care as “the provision of integrated, accessible health care services by clinicians who are accountable for addressing a large majority of personal health care needs, developing a sustained partnership with patients, and practicing in the context of the family and community” (Cooley, 2004). Primary health care consists of three core components: (1) preventive care, focusing on maintaining physical and mental health and preventing health problems while reducing burden of existing ones; (2) diagnostic care, focusing on identifying the nature of health concerns; and (3) treatment, focusing on controlling, correcting, and reducing the problems (National Academies of Sciences Engineering and Medicine, 2018). The traditional model of primary care for children has consisted of a solo medical practitioner or a group of practitioners, along with nurses and support staff, who follow children

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until adulthood, offering anticipatory guidance, treating acute medical illnesses, and facilitating referrals. However, such a model may not meet the needs of children with developmental disabilities or complex health needs given the subspecialty nature of many of their health problems or the need for services and programs well outside the scope of the traditional doctor’s office. The concept of the patient-centered medical home (PCMH) originated in 1967 to describe a central source of care that assumes full responsibility of coordinating a child’s health care across multiple domains. The Agency for Health Research and Quality defines five key features of care delivered by a PCMH: patient and family centeredness, comprehensive, coordinated, accessible, and committed to quality and safety. The medical home model has shown several benefits, including lower unmet needs, higher family centeredness, effectiveness and timeliness of care, as well as improved health status and family functioning (Akobirshoev, Parish, Mitra, & Dembo, 2019; Homer et al., 2008). Despite the benefits of the model, only 43% of children with special health care needs had access to a medical home in 2016 (Lichstein, Ghandour, & Mann, 2018). In addition to the access issues described previously in this chapter, several barriers to PCMH implementation decrease the likelihood of patients experiencing true medical home care. These include reimbursement and incentive structures that may not favor PCMH-related activities such as population management and care coordination/case management, practice/institutional culture and change management, workflow and workforce issues, optimization of health information technology, and cultivating and maintaining community relationships (Arend, Tsang-Quinn, Levine, & Thomas, 2012). Increasingly, PCMHs are tasked with managing the mental health needs of children with disabilities as well. This includes screening and intervention both to prevent and to treat mental health or behavioral difficulties, as well as promote mental health and wellbeing. However, like many physical health needs, mental and emotional wellbeing often rely on supports and services beyond the PCMH, within the school or community in which a child resides.

Coordination of Care As noted, children with disabilities often require the services of multiple professionals, including specialty health care clinicians, allied health therapists, special education team, mental health clinicians, and others, spread throughout a child and family’s community. Care for children with disabilities is more often fragmented, poorly coordinated, and less efficient and timely than is care for children without special health care needs. Barriers to effective coordination care delivery include silos of care, limited interoperability of electronic health records, privacy regulations, poor reimbursement for coordination activities, and provider time and capacity to engage in collaborative care (de Banate, Maypole, & Sadof, 2019). The benefits of care coordination are well documented. By itself, high-quality case management has been associated with reductions in hospital admissions and emergency department visits, as well as reduced lengths of hospital stay. Additionally,

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care management has shown benefit to increase the family’s knowledge of and ability to cope with the child’s health problems, improving satisfaction of care (National Academies of Sciences Engineering and Medicine, 2018).

Innovations in Health Care Delivery for Children With Disabilities Health Homes and the Medical Neighborhood In 2010 the passage of the ACA included Section 2703, which enabled federal support for states to establish health homes for people covered by Medicaid who either have (1) two or more chronic conditions, (2) one chronic condition and are at risk for a second, or (3) one serious and persistent mental health condition (Medicaid, n.d.a). Services provided by the health homes include comprehensive care management, care coordination, health promotion, comprehensive transitional care/followup, patient and family support, and referral to community and social support services. The law gave states flexibility to determine how the health home was designed. Thus states could designate the responsibilities of the health homes to community centers or other agencies rather than a traditional health care setting if states opted to do so. One such model described by Fueyo, Caldwell, Mattern, Zahid, and Foley (2015) provided comprehensive, multidisciplinary care for individuals with ASD or intellectual disability within a specialty behavioral health setting that is integrated with primary care services and other subspecialists. Similarly, other health home–like models have been based within hospital settings as well, particularly for populations of children known to frequent hospital-based outpatient and inpatient care. Such models aim to provide one-stop shopping that maximizes organizational efficiency, streamlines frequent care, and leverages hospital resources and a centralized information technology infrastructure to provide care coordination. A 2011 review of 33 unique hospital-based programs for children with complex medical needs found that half were entirely hospital based, whereas the other half contained community-based components. Overall, the evidence pointed to increased effectiveness and efficiency of care as well as patient and family centeredness of care. Of note, none evaluated whether care provided in these settings was more equitable (Cohen, Jovcevska, Kuo, & Mahant, 2011). Over the past 2 decades, the concept of the medical (or health) neighborhood has emerged to encapsulate the idea of a fully coordinated and engaged community of support, extending beyond just the medical or health home and its capacity to deliver comprehensive, coordinated, familycentered care. The health neighborhood was originally conceptualized primarily as a more formalized and integrated network of primary care, specialty care, and health services, such as hospitals, nursing homes, and the like (Ortiz, 2020; Spatz, Bricker, & Gabbay, 2014). However, Garg, Sandel, Dworkin, Kahn, and Zuckerman (2012) advocated for the health neighborhood to include “community-based, nonmedical services that promote the health of patients and families” given the recognized adverse impact of social determinants of health, such as housing conditions, food

insecurity, and neighborhood safety, that require the need for carefully coordinated social, legal, and other services. One model of a medical neighborhood described by Bansa et al. (2019) utilized a team of community health workers to forge formal partnerships with medical facilities and clinics, schools, and other community agencies with the goal of uniting all under a true community-based system of care, rather than a hospital- or center-based system. Such a neighborhood “meets patients ‘where they live’ versus limiting services to a clinic setting,” while helping families overcome what they termed the “social determinants of health maze” of disorganized and poorly coordinated systems and advocate for the whole patient in the quest to achieve and maintain optimal health, wellbeing, and engagement in the community.

Mental Health Integration Integration of mental health services into the existing health care landscape provides timelier access to needed care and reduces the barriers to coordination between the physical and mental health arenas. Three models of mental health integration have been described (National Academies of Sciences Engineering and Medicine, 2018) (see Chapter 115 for additional information). The first model, coordinated care, strives to enhance access to consultations between primary care and mental health providers. An example of this type of model is the Massachusetts Child Psychiatry Access Project (MCPAP), which provides regional child behavioral health teams available for primary care clinicians to consult regarding psychopharmacology and recommendations for mental health treatment or therapy (Sarvet et al., 2010). MCPAP has been widely replicated. The second model, colocated care, houses one or more behavioral health professionals within a primary care practice. In this model primary care clinicians and mental health professionals often work in parallel through a variety of means, but they have naturally enhanced opportunity for communication directly and through electronic means for centralized record management, which can help not only with care coordination but improving the primary care clinician’s competencies in mental health issues through direct and indirect training (Kolko & Perrin, 2014). The third, collaborative care, is an aspirational model that integrates the efforts of primary and mental health care clinicians together in a true partnership with families to provide whole-person care. This model aspires to realize Wagner’s care model, drawing on other examples of behavioral health collaboration for adults with such disorders as diabetes and hypertension to achieve better patient outcomes (Campo, Geist, & Kolko, 2018). One example is the Reaching Out to Adolescents in Distress program, which employed master’slevel behavioral health clinicians as care managers to facilitate both psychopharmacology and psychotherapy treatments within the primary care setting. Care managers met weekly with consulting psychiatrists, psychologists, and pediatricians. Results showed a dramatic increase in receipt of and response to treatment, with higher rates of remission and satisfaction in care (Richardson et al., 2014).

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Telehealth Geographic barriers severely limit access to quality health care. In response, telehealth services have become an increasingly important modality within the overall health care landscape. While telehealth has long been an established method of providing direct medical, developmental, and behavioral care, the COVID-19 pandemic prompted rapid uptake and deployment of telehealth capabilities across the landscape; an international survey found uptake of telehealth among a diverse array of clinicians to increase from 4% in 2019 to 70% in 2021 (Camden & Silva, 2021). Telehealth, in its most classic form, allows clinicians to connect to patients through telephone or video/audio (i.e., teleconferencing) means. Care provided in this manner remains subjected to many of the same regulations and restrictions to which in-person care is subjected. Insurance coverage and parity, practice across geographic boundaries (e.g., across US state lines), and medical necessity and appropriateness of services provided all factor into the delivery of telehealth. Camden and Silva (2021) described three main categories of need to implement telehealth: (1) equipment and technology, including Internet connectivity and security; (2) system and organization, including legislative policies, insurance coverage and payment, ethics, and institutional support; and (3) training, including optimizing communication, best practices, and adapting regular care to a telehealth modality. Telehealth encompasses many other technology-enabled health care practices. Asynchronous telehealth allows capture of patient data outside of a provider-patient encounter for use in assessments or in treatment monitoring. An example of this type of telehealth is the Systematic Observation of Red Flags (SORF), a level 2 autism screener, which instructs families to record videos of caregiver-child interactions. The family then submits the videos to an autism expert, who codes the child’s behaviors and determines level of concern for ASD (Dow, Day, Kutta, Nottke, & Wetherby, 2020). Another telehealth modality is the use of mobile devices to capture and monitor health information, such as vital signs, sleep data, activity level, and other patient-related information, as well as to receive information from the health care sector, such as health education, promotion, and alerts. For example, programs designed to send parenting and developmental tips periodically to enrolled families can serve not only to promote parent and child relationships and wellbeing, but to empower families and patients in self-management, a core component of Wagner’s care model. Telehealth technology can also permit broader networks and collaborations between providers to support and disseminate best practices. The Extension for Community Healthcare Outcomes (ECHO) program is one example of how technology has been used to support clinicians across diverse geographic areas in their own implementation of care typically provided by subspecialists. Many ECHO programs have been implemented over the past 15 years targeting improving care in many subspecialty areas, including several developmentalbehavioral pediatric focuses such as autism and behavioral

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health (Hostutler et al., 2020; Mazurek et al., 2020). With a shortage of developmental-behavioral pediatric clinicians and an increasing prevalence of developmental-behavioral conditions, learning collaboratives have become an important pillar of expanding an effective workforce and ensuring timely and community-based access to subspecialty expertise (Arora et al., 2017).

CONCLUSION The health care system is a complicated interplay of entities, consisting not only of those who provide and receive care, but the community in which they live and work, as well as the administrative, financial, political, and sociocultural forces that determine access to, delivery, and quality of care. Children with disabilities and their families often must navigate a greater landscape of the health care system to achieve their optimal health and wellbeing. As Cara Coleman, Justice’s mother, eloquently stated, the child and family often find themselves at the mercy of such a system rather than central to its operation. Such is the outcome when barriers to insurance coverage, provider access, and coordination of care seem to determine a child’s fate more than the ability to realize the potential of the health care system to deliver true value to each child and family. A thorough understanding of how the health care system functions for individual children and for families opens the door to opportunities for innovation, guided by the vision of the Alma Ata Declaration and the IOM’s six quality indicators, to forge a more coordinated, efficient, and family-centered health care system that enables all children, particularly those who are most vulnerable, to achieve their fullest potential and wellbeing.

REFERENCES Adams, J. S., & Woods, E. R. (2016). Redesign of chronic illness care in children and adolescents: Evidence for the chronic care model. Current Opinion in Pediatrics, 28(4), 428–433. Akobirshoev, I., Parish, S., Mitra, M., & Dembo, R. (2019). Impact of medical home on health care of children with and without special health care needs: Update from the 2016 National Survey of Children’s Health. Maternal Child Health Journal, 23(11), 1500–1507. Arend, J., Tsang-Quinn, J., Levine, C., & Thomas, D. (2012). The patient-centered medical home: History, components, and review of the evidence. Mount Sinai Journal of Medicine, 79(4), 433–450. Arora, S., Kalishman, S. G., Thornton, K. A., Komaromy, M. S., Katzman, J. G., Struminger, B. B., … Bradford, A. M. (2017). Project ECHO: A telementoring network model for continuing professional development. Journal of Continuing Education in the Health Professions, 37(4), 239–244. Bansa, M., Glassgow, A. E., Martin, M., Caskey, R., Paulson, A., Minier, M., … Van Voorhees, B. (2019). Development of a community-based medical neighborhood for children with chronic conditions. Programs in Community Health Partnerships, 13(1), 83–95. Callaghan, T., & Sylvester, S. (2019). Autism spectrum disorder, politics, and the generosity of insurance mandates in the United States. PLoS One, 14(5), e0217064.

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Camden, C., & Silva, M. (2021). Pediatric telehealth: Opportunities created by the covid-19 and suggestions to sustain its use to support families of children with disabilities. Physical & Occupational Therapy in Pediatrics, 41(1), 1–17. Campo, J. V., Geist, R., & Kolko, D. J. (2018). Integration of pediatric behavioral health services in primary care: Improving access and outcomes with collaborative care. The Canadian Journal of Psychiatry, 63(7), 432–438. Catalyst Center. (2012). The TEFRA Medicaid state plan option and Katie Beckett waiver for children—Making it possible to care for children with significant disabilities at home. https://ciswh.org/ wp-content/uploads/2016/07/TEFRA.pdf Catalyst Center. (2017). Public insurance programs and children with special health care needs: The basics: What are Medicaid and CHIP? https://ciswh.org/wp-content/uploads/2017/10/ Medicaid-Tutorial-Section2-2017.pdf Chung, P. J., & Schuster, M. A. (2004). Access and quality in child health services: Voltage drops. Health Affairs, 23(5), 77–87. Cohen, E., Jovcevska, V., Kuo, D. Z., & Mahant, S. (2011). Hospitalbased comprehensive care programs for children with special health care needs: A systematic review. Archives of Pediatrics & Adolescent Medicine, 165(6), 554–561. Cohen, R. A., & Terlizzi, E. P. (2020). Health insurance coverage: Early release of quarterly estimates from the National Health Interview Survey. National Center for Health Statistics. https:// www.cdc.gov/nchs/nhis/releases.htm Coleman, C. L. (2019). Not just along for the ride: Families are the engine that drives pediatric home health care. Health Affairs Blog. https://www.healthaffairs.org/do/10.1377/ hblog20190415.172668/full/ Cooley, W. C. (2004). Redefining primary pediatric care for children with special health care needs: The primary care medical home. Current Opinion in Pediatrics, 16(6), 689–692. de Banate, M. A., Maypole, J., & Sadof, M. (2019). Care coordination for children with medical complexity. Current Opinion in Pediatrics, 31(4), 575–582. Dow, D., Day, T. N., Kutta, T. J., Nottke, C., & Wetherby, A. M. (2020). Screening for autism spectrum disorder in a naturalistic home setting using the systematic observation of red flags (SORF) at 18–24 months. Autism Research, 13(1), 122–133. Eiken, S., Amos, A., Sredl, K., & Saucier, P. (2018). Medicaid expenditures for section 1915(c) waiver programs in FY 2016. Medicaid Innovation Accelerator Program; IBM Watson Health. https://www.medicaid.gov/sites/default/files/2019-12/1915cexpenditures-fy2016.pdf Feldman, H. M. (2013). Redesigning health care for children with disabilities: Strengthening inclusion, contribution, and health. Paul H. Brookes Publishing Co. Feldman, H. M., Buysse, C. A., Hubner, L. M., Huffman, L. C., & Loe, I. M. (2015). Patient Protection and Affordable Care Act of 2010 and children and youth with special health care needs. Journal of Developmental & Behavioral Pediatrics, 36(3), 207–217. Fueyo, M., Caldwell, T., Mattern, S. B., Zahid, J., & Foley, T. (2015). The health home: A service delivery model for autism and intellectual disability. Psychiatric Services, 66(11), 1135–1137. Garg, A., Sandel, M., Dworkin, P. H., Kahn, R. S., & Zuckerman, B. (2012). From medical home to health neighborhood: Transforming the medical home into a community-based health neighborhood. Journal of Pediatrics, 160(4), 535–536. e531. Homer, C. J., Klatka, K., Romm, D., Kuhlthau, K., Bloom, S., Newacheck, P., … Perrin, J. M. (2008). A review of the evidence

for the medical home for children with special health care needs. Pediatrics, 122(4), e922–e937. Honberg, L., McPherson, M., Strickland, B., Gage, J. C., & Newacheck, P. W. (2005). Assuring adequate health insurance: Results of the National Survey of Children With Special Health Care Needs. Pediatrics, 115(5), 1233–1239. Hostutler, C. A., Valleru, J., Maciejewski, H. M., Hess, A., Gleeson, S. P., & Ramtekkar, U. P. (2020). Improving pediatrician’s behavioral health competencies through the Project ECHO teleconsultation model. Clinical Pediatrics, 59(12), 1049–1057. Institute of Medicine Committee on Quality of Health Care in America. (2000). To err is human: Building a safer health system. National Academies Press. Institute of Medicine Committee on Quality of Health Care in America. (2001). Crossing the quality chasm: A new health system for the 21st century. National Academies Press. Kolko, D. J., & Perrin, E. (2014). The integration of behavioral health interventions in children’s health care: Services. science, and suggestions. Journal of Clinical Child & Adolescent Psychology, 43(2), 216–228. Lichstein, J. C., Ghandour, R. M., & Mann, M. Y. (2018). Access to the medical home among children with and without special health care needs. Pediatrics, 142(6). Mandell, D. S., Barry, C. L., Marcus, S. C., Xie, M., Shea, K., Mullan, K., & Epstein, A. J. (2016). Effects of autism spectrum disorder insurance mandates on the treated prevalence of autism spectrum disorder. JAMA Pediatrics, 170(9), 887–893. Mazurek, M. O., Parker, R. A., Chan, J., Kuhlthau, K., Sohl, K., & Collaborative, E. A. (2020). Effectiveness of the Extension for Community Health Outcomes model as applied to primary care for autism: A partial stepped-wedge randomized clinical trial. JAMA Pediatrics, 174(5), e196306. Medicaid. (n.d.a). Health homes. https://www.medicaid.gov/ medicaid/long-term-services-supports/health-homes/index. html Medicaid. (n.d.b). Money follows the person. https://www.medicaid. gov/medicaid/long-term-services-supports/money-followsperson/index.html Mossialos, E., Djordjevic, A., Osborn, R., & Sarnak, D. (Eds.). (2017). International profiles of health care systems. The Commonwealth Fund. Musumeci, M., & Chidambaram, P. (2019). Medicaid’s role for children with special health care needs: A look at eligibility, services, and spending. https://www.kff.org/medicaid/issue-brief/ medicaids-role-for-children-with-special-health-care-needs-alook-at-eligibility-services-and-spending/ National Academies of Sciences Engineering and Medicine. (2018). Opportunities for improving programs and services for children with disabilities. The National Academies Press. National Disability Institute. (n.d.). About ABLE accounts. https:// www.ablenrc.org/what-is-able/what-are-able-acounts/ Ortiz, M. R. (2020). The patient-centered health neighborhood. Nursing Science Quarterly, 33(4), 353–357. Porter, M. E. (2010). What is value in health care? NEJM, 363(26), 2477–2481. Richardson, L. P., Ludman, E., McCauley, E., Lindenbaum, J., Larison, C., Zhou, C., … Katon, W. (2014). Collaborative care for adolescents with depression in primary care: A randomized clinical trial. JAMA, 312(8), 809–816. Rifkin, S. B. (2018). Health for all and primary health care, 1978– 2018: A historical perspective on policies and programs over 40 years. Oxford University Press.

CHAPTER 114  Health Care Systems for Children With Disabilities Romley, J. A., Shah, A. K., Chung, P. J., Elliott, M. N., Vestal, K. D., & Schuster, M. A. (2017). Family-provided health care for children with special health care needs. Pediatrics, 139(1), e20161287. Sandler, A. D. (2019a). Value-driven care in developmentalbehavioral pediatrics, part 1: The value proposition of developmental-behavioral pediatrics. Journal of Developmental & Behavioral Pediatrics, 40(6), 472–478. Sandler, A. D. (2019b). Value-driven care in developmentalbehavioral pediatrics, part 2: Measuring quality and meeting the challenge. Journal of Developmental & Behavioral Pediatrics, 40(6), 479–488. Sarvet, B., Gold, J., Bostic, J. Q., Masek, B. J., Prince, J. B., JeffersTerry, M., … Straus, J. H. (2010). Improving access to mental

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health care for children: The Massachusetts Child Psychiatry Access Project. Pediatrics, 126(6), 1191–1200. Spatz, C., Bricker, P., & Gabbay, R. (2014). The patient-centered medical neighborhood: Transformation of specialty care. American Journal of Medical Quality, 29(4), 344–349. US Department of Health & Human Services Office of the Assistant Secretary for Planning and Evaluation. (2021). HHS poverty guidelines for 2021. https://aspe.hhs.gov/poverty-guidelines Wagner, E. H., Austin, B. T., Davis, C., Hindmarsh, M., Schaefer, J., & Bonomi, A. (2001). Improving chronic illness care: Translating evidence into action. Health Affairs, 20(6), 64–78. World Health Organization. (2014). International classification of functioning, disability, and health. www.who.int/classifications/ icf/en/gol.

115 Interprofessional Team-Based Care Jeffrey D. Shahidullah, Cody A. Hostutler, and Rebecca A. Baum

For additional material related to the content of this chapter, please see Chapter 15.

VIGNETTE Mya is a 9-year-old girl who presents to Dr. Cruz’s office for an attention-deficit/hyperactivity disorder (ADHD) evaluation. She is in third grade in a typical classroom setting. Her teachers report that she doesn’t pay attention, and her grades are poor. Her mother is worried that Mya may have to repeat third grade and wonders if ADHD medication may help. She recently signed papers for Mya to get extra help in school. Mya’s past medical history is significant for asthma, and she’s missed several days of school due to emergency department visits and hospitalizations. Her family is currently without health insurance, and she has been out of medication for the past few months. Review of her sleep history suggests poor sleep due to nocturnal cough. Dr. Cruz notes that referrals have been made to pulmonology, but Mya has been unable to attend due to transportation issues. On exam, Mya is interactive and engaged but has trouble answering questions at an age-appropriate level. Dr. Cruz decides to obtain more information from Mya’s school. He learns that she underwent psychoeducational testing, which suggested moderate intellectual disability, and that she recently qualified for special education services. He shares this information with Mya’s mother and how her cognitive profile, sleep difficulties, and persistent asthma may be affecting her attention in the classroom setting. He contacts his office’s social worker to help secure health insurance for Mya and asks the nurse and receptionist to work with Mya’s mother to coordinate a pulmonology appointment at a time when she has transportation available.

INTRODUCTION The unique and changing needs of children are often best addressed by clinicians across disciplines and systems operating as high-functioning teams. For example, youth may present in pediatric settings with cooccurring physical health (e.g., asthma, diabetes), behavioral health (e.g., depression, anxiety), educational (e.g., learning disabilities), and social stressors (e.g., trauma, food insecurity). No one individual or discipline will have the time, training, or resources to address the comprehensive needs of every child and family. Thus appropriate care for this complex mix of needs requires communication, collaboration, and care coordination across a variety of disciplines and service systems. 1088

Often referred to as interprofessional team-based care, this approach can promote collaboration across numerous systems (i.e., interagency collaboration) and providers (i.e., interprofessional collaboration) to avoid or reduce fragmentation, gaps, and duplication in services that lead to inefficiencies in care, particularly for families of children with developmental-behavioral (DB) concerns (Shahidullah, Azad, Mezher, McClain, & McIntyre, 2018). Interprofessional team-based care is the means by which different health care professionals with diverse perspectives, knowledge, and skills collaborate in patient care to achieve a common goal. As illustrated in the opening vignette, team-based care builds upon the foundation of the medical home model by reaching out across providers (e.g., physicians, nurses, physician assistants, pharmacists, social workers, psychologists, case managers, family navigators) both within and across systems (e.g., medical, social, educational) to enhance communication and collaboration to maximize efficiency and outcomes for children, families, and providers. This chapter begins by highlighting the rationale for interprofessional team-based care in developmental-behavioral pediatrics (DBP). Definitions pertinent to interprofessional team-based care are provided in Table 115.1. Next, models and specific strategies for the delivery of interprofessional team-based care are presented. Then, guidance around hiring and training is provided. The chapter concludes with a discussion of implications for practice, payment, and policy.

COMPLEXITY IN CLINICAL PRACTICE The very nature of DB conditions lends itself to an inherent degree of complexity. The identification and management of DB conditions spans multiple settings, and concerns identified in one setting may not translate or be conveyed to the next. For example, behavioral concerns noted in the child care setting may not make their way to the pediatrician’s office, where screening for autism spectrum disorder (ASD) could occur. Similarly, a student may qualify for special education services under the intellectual disability (ID) classification based on psychoeducational testing, the results of which may remain in the student’s education record rather than their medical one. Intervention for DB conditions often spans multiple settings as well. Patients with conditions such as ADHD, ASD, ID, and learning disabilities often receive special education services in the school setting, as well as occupational therapy, physical therapy, and speech therapy.

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TABLE 115.1  Definitions Pertinent to Interprofessional Team-Based Care Term

Definition/Description

Communication Exchange of information, typically unidirectional, to achieve a better understanding of care management needs of a patient

Communication in a health care context may include sending or sharing (via electronic medical record messaging or other Health Insurance Portability and Accountability Act–compliant messaging system, phone call, email, fax, or in-person) of health records or information (e.g., medical, educational, testing results, disposition summaries, treatment status/recommendations) often in a one-time or isolated fashion without the expectation of working together in an ongoing manner to plan and problem solve to promote positive patient outcomes.

Collaboration Two or more providers working together within a system or across systems in an ongoing manner to plan and problem solve to promote positive patient outcomes

Collaboration emphasizes a dynamic and active process whereby providers assume complementary roles and cooperatively work together to contribute information and respond to that information together to inform clinical decision making.

Care Coordination Deliberate organization of patient care activities and sharing of information across providers and systems such as primary care, specialty care, and community services and supports such as schools so that multiple stakeholders are working collaboratively to streamline information and roles in an effort to provide care that is efficient, continuous, and effective from a time and resource perspective

Although sometimes used synonymously with collaboration, care coordination is a distinct concept that describes the broad objective of aligning systems resources with patient and population needs to improve the effectiveness, safety, and efficiency of care. Care coordination relies on the processes of communication and collaboration.

Interprofessional Collaborationa,b Providers from multiple disciplines work interdependently within a clinical context to achieve a common goal

It involves integration or modification of the efforts of the contributing disciplines. It relies on a team science process that leverages the strengths and expertise of providers from different fields and demands that the professionals consider the contributions of other team members in making their own contribution. This approach suggests intersecting lines of communication and collaboration.

Interprofessional Team-Based Care The means by which different health care professionals, with diverse perspectives, knowledge, and skills, collaborate in meeting patient needs and preferences by actively engaging patients as full participants in their care, while encouraging all professionals to practice to the top extent of their license

This term, although similar to the definition of interprofessional collaboration above, also emphasizes the concept of team-based care as it pertains to the current needs of the health care system around systemic factors associated with health care inefficiencies (i.e., workforce shortages, medical errors, fragmentation, and duplication leading to high costs, low patient and provider satisfaction, poor outcomes metrics, and physician burnout and moral injury). Team-based care typically includes (1) collaboration among team members, the patient, and family, (2) shared goals within and across systems of care, and (3) coordinated, high-quality, patient-centered care.

Although the term is often used interchangeably with “interdisciplinary collaboration,” interdisciplinary is typically referred to in a broader academic sense whereby two or more disciplines (e.g., nursing, medicine, psychology, social work) align resources with one another, often in educational endeavors, while the term “interprofessional” refers to clinical practice. b Interprofessional collaboration also differs from “multidisciplinary collaboration,” which involves professionals from two or more disciplines offering their own discipline-specific services to offer patients a greater breadth of services to patients. However, team members provide their services independently in a parallel or siloed fashion rather than an integrated or streamlined fashion. a

In addition to this inherent complexity, children and families affected by DB conditions may be particularly vulnerable to social determinants of health (SDOH) and adverse childhood experiences (ACEs). SDOH refer to social, physical, and economic factors that may negatively impact health outcomes when needs in these areas are unmet. Examples of SDOH include housing, education, income, and other societal factors, with unmet needs in these areas contributing to downstream issues such as poor living conditions, academic underachievement, poverty, and discrimination. ACEs are

stressful life events that can have long-term impact, especially when they are chronic, sustained, and outstrip an individual’s resources to cope with the stressor. Examples include abuse and neglect, parental mental illness, domestic violence, and divorce. Research has demonstrated a dose-response correlation between ACEs and a range of negative outcomes related to overall physical health and wellbeing (Felitti et al., 1998). Studies suggest that children and families affected by DB conditions may be more likely to experience ACEs than children and families of typically developing children, and children

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with developmental disabilities are at increased risk for abuse and neglect. Increasingly, health systems are recognizing that addressing these societal and community factors is equally if not more important than addressing the condition for which the patient initially presented for care. See Chapter 15 for additional information on ACEs.

FRAGMENTATION ACROSS SYSTEMS Given the factors described, children and families affected by DB conditions frequently find themselves interfacing with multiple systems of care, including health care, early intervention, child care, education, behavioral health, and community agencies. However, these systems have not necessarily been built to work together. Moreover, communication across systems is often problematic due to logistic constraints such as time and method of communication. Wellintended privacy laws such as Health Insurance Portability and Accountability Act (in the medical and behavioral health settings) and Family Educational Rights and Privacy Act (in the educational setting) can also serve as barriers to information exchange. Barriers to coordination of care between the health care and educational systems include lack of awareness and knowledge of (1) the roles and function of providers in different systems, (2) differences between Diagnostic and Statistical Manual of Mental Disoders (fifth edition; American Psychiatric Association, 2013) diagnoses in the medical or behavioral health settings and qualifying eligibility definitions for special education services, and (3) the different privacy laws around information sharing (McClain et al., 2020; Shahidullah et al., 2019). Research suggests that this care is not coordinated with pediatric clinicians who may have little interface with, and knowledge of, school support services such as special education programming (Shah, Kunnavakkam, & Msall, 2013). Mya’s case illustrates the potential for fragmented care between the health care and educational settings. Given the amount of time students spend in school, Mya’s teachers and other school personnel have ample opportunities to observe her functioning across multiple domains (e.g., social, behavioral, cognitive, and academic). In the course of regular practice it may be difficult to share this information with Mya’s mother and with Dr. Cruz due to time and other logistical constraints. In Mya’s case school personnel recognized her learning difficulties, initiated an evaluation for special education services, and developed an individualized education plan (IEP) to support her learning needs. While this would have been done with her mother’s consent and participation, navigating the IEP process can be overwhelming for families. By obtaining a copy of Mya’s IEP, Dr. Cruz was able to review psychological testing performed in the school setting that was also necessary for his evaluation in the medical setting, thereby reducing potential duplication of services. This also provided an opportunity for him to help Mya’s mother better understand the special education services that Mya is receiving.

Fragmentation of care may also lead to reduced quality and increased cost of care given inefficiencies, duplication, or gaps in services, with patients feeling overwhelmed and marginalized in their care (Stange, 2009). As a result, children and families affected by DB conditions are at increased risk for unmet health care, educational, and psychosocial needs. In its 1999 report, To Err Is Human: Building a Safer Health Care System, the Institute of Medicine (IOM, 2000) (now the National Academies of Sciences, Engineering and Medicine) highlighted the importance of team-based health care in addressing fragmented workflows and limited communication across systems that contribute significantly to medical errors. The report called for more effective communication, collaboration, goal sharing, and interdependent functioning among health care teams. Team-based care has been identified as an essential component in the triple aim of health care reform: (1) better patient experience, (2) better population health, and (3) lower overall costs (Berwick, Nolan, & Whittington, 2008). These aims were developed in response to the rising US health care costs coupled with quality metrics ranking well below other developed nations (Kruk et al., 2018). In addition to the fragmentation across systems described earlier, traditional health care settings often lack a framework for practitioners to function interprofessionally and within a team structure. For example, reporting structures, communication processes, roles/responsibilities, and accountability monitoring may be established for practitioners functioning independently but less so in an interprofessional team setting (Porter & Teisberg, 2006).

FRAGMENTATION ACROSS PROVIDERS Historically, training for professionals has primarily occurred within their particular discipline and system of care, each with its own language, processes, and culture. In the roughly 20 years since the IOM’s (Kohn, Corrigan, & Donaldson, 2000) report on health care quality there is now near universal recognition that interprofessional team-based care is a clinical and ethical imperative in providing safe and high-quality care. In 2014 Bodenheimer and Sinksy (2014) added a fourth goal to the triple aim and suggested that provider satisfaction be included, thereby coining the term “quadruple aim.” Within the current delivery system, rates of burnout and moral injury are rising among health care clinicians, leading to a pediatric specialty workforce crisis in the United States (Shanafelt et al., 2012). Studies suggest that factors related to the work environment (i.e., excessive workloads, inefficient work processes, clerical burdens, organizational support structures) drive physician burnout and moral injury (West, Dyrbye, & Shanafelt0, 2018). Team-based care has been promoted as a foundational solution to address these systemic issues and promote practitioner wellbeing (Shanafelt et al., 2017). National shortages of both physicians and nurses for the foreseeable future highlight the need for team-based care where health care providers practice to the top of their licensure, training, and experience to promote professional satisfaction and more efficient clinical collaboration through task shifting (i.e.,

CHAPTER 115  Interprofessional Team-Based Care

delegating specific tasks to less specialized, more available staff) (World Health Organization, 2008).

DELIVERY OF INTERPROFESSIONAL TEAM-BASED CARE Models There are many different models of interprofessional care that are spread across different levels of integration. Although typically considered in the context of primary care, there are a number of innovative models across the country that integrate behavioral health clinicians into the DBP practice. In reality levels of integration exist in a nuanced continuum, and it is helpful to divide them into three basic levels: coordinated, colocated, and integrated.

Coordinated When professionals collaborate from a distance, it is best described as a coordinated level of integration. Models within the coordinated level of integration involve professionals across disciplines working together in patient care. One example of a model of interprofessional collaboration at the coordinated level is the Massachusetts Child Psychiatry Access Project (MCPAP; Sarvet et al., 2010). MCPAP is a psychiatry teleconsultation program wherein pediatric clinicians can obtain one-onone psychiatric consultation. Another example of coordinated interprofessional collaboration is the Project Extension for Community Health Outcomes (ECHO) group teleconsultation program. In Project ECHO an interdisciplinary group of academic specialists use case-based and didactic learning methods to build community clinicians’ ability to manage complex conditions, including specific disorders such as ASD and general pediatric mental health needs (Hostutler et al., 2020; Mazurek, Brown, Curran, & Sohl, 2017). Coordinated consultation models such as MCPAP and Project ECHO use interprofessional collaboration to move knowledge, rather than patients, to provide high-quality care within their medical homes. Colocated Models that include multiple disciplines working in the same location but maintaining largely separate workflows, systems, and records are considered colocated. One example of this is colocated behavioral health services wherein a mental health professional sees patients on one’s own schedule in a medical clinic. Colocation allows patients to come to a familiar location, and working within the same clinic provides opportunities for professionals to communicate more interactively than unidirectionally about patients to coordinate their treatment plans. Limitations of colocation include that behavioral health clinicians provide services in the same location but practice independently using a traditional referral model, thus decreasing opportunities for interprofessional collaboration and often function as more multidisciplinary than interprofessional. Integrated Models that involve multiple professionals working in the same location, and within the same workflows, are considered

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integrated models. In integrated models professionals work together to create a single treatment plan, and roles are assigned to all team members. One example is having a clinical pharmacist on the team who completes medication reconciliations, identifies and prevents potential adverse drug events, and provides medication education to providers and patients during the course of the medical visit (Kuhn et al., 2019). Another example is collaborative care models where care managers, pediatricians, and psychiatrists work together to screen for, assess, treat, and monitor a specific population of patients (see Kolko et al., 2014). Integrated models often maximize the benefits of interprofessional care by sharing information, workflows, treatment plans, records, space, resources, and closely collaborating.

Team-Based Strategies The following are specific strategies that may be used in teambased care.

Team Huddles Huddles typically occur before a clinic begins, and they involve members of the team briefly meeting (5–10 minutes) to present and discuss relevant operational or clinical information (Brinster, Brukilacchio, Fikki-Urbanovsky, Shahidullah, & Ravenscroft, 2022; Salas, Zajac, & Marlow, 2018). This often includes reviewing the schedule, identifying needs of patients to be seen, identifying potential workflow concerns, reviewing progress on previously identified problems, and conducting safety reviews. Teams can also use this time to acknowledge team members for their help or recent accomplishments, or to implement brief self-care activities (e.g., a 1-minute mindfulness activity, gratitude exercises) to promote wellness and build team cohesion. Debriefs Similar to huddles, debriefs are brief meetings where a team can discuss individual and team-level performance, identify successes and errors, and develop a plan to learn from unexpected successes and reduce future errors (Salas et al., 2008). Debriefs usually occur at the end of a clinic session. Debriefs work best when team members feel comfortable and safe to discuss errors and other problems. The team focuses more on the processes rather than outcomes, and the team focuses on specific behaviors associated with successes and errors and tracks them over time.

Barriers to Interprofessional Care The following include common examples of barriers to interprofessional care. While payment is also a common barrier, issues with regard to financial implications of interprofessional care are discussed later in the chapter.

Physical Space Physical space can be a barrier or facilitator to effective interprofessional team-based care. Optimal environments have a balance between shared and private workspaces. Shared workspaces promote increased accessibility, situational awareness, communication, and more clinically productive teams (Gunn

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et al., 2015; Hiefner & Woods, 2019). Private workspaces can be helpful for more focused work (e.g., paperwork, phone calls). Gunn et al. (2015) have provided recommended layouts for integrated, team-based work environments.

Time Involving multiple professionals in a single visit can extend the time of that visit (Riley, Paternostro, Walker, & Wagner, 2019). Further, taking time to build team culture, huddle, and debrief may seem impossible within a busy work day. However, interprofessional care can save individual providers time. For example, research has found that when a behavioral health concern is brought up in a medical visit, medical providers working independently spend more time and receive less reimbursement than visits for medicalonly reasons (Meadows, Valleley, Haack, Thorson, & Evans, 2011). However, involving a behavioral health provider in the visit can save roughly 12 minutes of medical provider time per visit (Riley et al., 2019). Information Sharing and Security Parents generally report wanting their health information shared across professionals to promote consistency in care and feel overwhelmed with being the “communication bridge” between multiple providers (Greene, Ford, WardZimmerman, & Foster, 2015). That said, not all patients want their behavioral health information shared with just anyone, and patients generally report wanting control over the information included in their health record and who has access (Caine & Hanania, 2013; Schwartz et al., 2015).

HIRING AND TRAINING Hiring Recruiting and hiring team-oriented professionals is key to building effective teams. While specific knowledge and skills are easily trained, it is very difficult to train personality characteristics that are important to team-based care. As such, it is important to identify people who are flexible, adaptive, able to easily build and maintain relationships, communicate clearly, and have a history of collaborating with others. This can be

assessed through careful attention to letters of recommendation, references, and thoughtful interview questions. Helpful interview questions include: 1. When you have had to complete group projects, what was that experience like for you? 2. Tell me about a time you worked with a team to solve a difficult problem. 3. What is your ideal work environment? (Looking for responses that include team members) 4. How do you see your role as someone within our team? 5. If two team members asked you to do something at the same time, how would you decide what to do? 6. If a team member came to you frustrated with another team member or clinic policy and said, “Don’t you agree?”, how would you respond? Another helpful practice is to have multiple team members interview job candidates and be careful to note how interviewees interact with each member and whether they appear to value all members similarly.

Training For interprofessional practice to evolve and spread, training programs in the health professions must adopt and expand interprofessional education (IPE). This includes implementation of IPE curricula, shared learning environments, and attention to language and discipline-specific cultural barriers that can contribute to communication challenges within teams. As an educational approach, IPE aims to prepare health professionals and health professions students to provide patient care in a team-based environment by emphasizing that learners from different disciplines learn “with,” “from,” and “about”’ those from other disciplines (Interprofessional Education Collaborative [IPEC], 2016). IPE curricula broadly center around equipping learners with the IPEC core competencies for team-based care (Table 115.2). DBP care may involve disciplines with similar and sometimes overlapping roles. Examples include behavioral health (from psychology, psychiatry, social work, and counseling), allied health (occupational therapy, physical therapy, speech therapy), and pediatrics (primary care, developmental, neurology, physical medicine, and rehabilitation). While this

TABLE 115.2  IPEC Core Competencies Competency

Description

Values/Ethics for Interprofessional Practice

Ability to work with individuals of other professions to maintain a climate of mutual respect and shared values

Roles/Responsibilities

Ability to use the knowledge of one’s own role and those of other professions to appropriately assess and address the health care needs of patients and to promote and advance the health of populations

Interprofessional Communication

Ability to communicate with patients, families, communities, and professionals in health care and other fields in a responsive and responsible manner that supports a team approach to the promotion and maintenance of health and the prevention and treatment of disease

Teams and Teamwork

Ability to apply relationship-building values and the principles of team dynamics to perform effectively in different team roles to plan, deliver, and evaluate patient/population-centered care and population health programs and policies that are safe, timely, efficient, effective, and equitable

IPEC, Interprofessional Education Collaborative.

CHAPTER 115  Interprofessional Team-Based Care

Collaborative

Common

Complementary

Fig. 115.1 Aspects of training to promote interprofessional teambased care.

can present potential challenges regarding role clarity, it also provides an opportunity for shared learning. Fig. 115.1 illustrates how these disciplines could benefit from training that includes a collaborative component (e.g., how to be a part of an interprofessional team), common curricula (e.g., communication skills, motivational interviewing), and complementary, discipline-specific components. A number of resources are available to health professionals interested in promoting understanding of the roles and skills of other professions, improving communication and collaboration skills, recognizing overlapping professional functions and roles, improving team functioning, and reducing communication breakdowns that can lead to ineffective care. Several DBP training programs are affiliated with the Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program of the Maternal and Child Health Bureau (MCHB). Currently funded through the Autism CARES Act, LEND was developed to provide IPE to trainees from 14 core academic disciplines who are interested in caring for individuals with neurodevelopmental disabilities and related conditions. Core disciplines include audiology, genetics, nursing, allied health, social work, special education, nutrition, pediatrics, and behavioral health. LEND programs offer trainees the opportunity to learn together, thereby improving interprofessional community and understanding as trainees enter the workforce. A particular focus of the program is involvement of self-advocates and family members as core faculty and trainees. LEND programs exist, either physically or through partnership, in all 50 states and territories and are supported by the MCHB Division of Maternal Child Health Workforce Development. In addition to providing training, clinical care, and programming for children and families, individual LEND programs have developed a number of resources and materials that are available in the public domain. At the graduate level, one of the largest evidence-based IPE training programs is TeamSTEPPS 2.0 (n.d.), a set of teamwork tools developed by the US Department of Health and Human Services Agency for Healthcare Research and Quality (AHRQ, n.d.). Originally developed as an intervention to reduce medical errors by improving communication and teamwork skills among health care professionals,

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TeamSTEPPS has become a required curricular component in a number of medical schools and IPE learning collaboratives across the country. Training future health professionals in an interprofessional approach at this early point in their education holds promise for promoting team-based care throughout their career.

IMPLICATIONS FOR PRACTICE, PAYMENT, AND POLICY Successful implementation of team-based care requires a considerable culture shift among professionals and for the health care organizations in which they practice. For professionals, role clarity can help ensure that team members feel valued and are practicing at the top of their education, skills, and license. Recognizing the unique contribution of each team member is essential for creating a more collaborative team environment. The team should agree upon processes for exchanging patient information, both verbally and electronically. Team identity should be developed and apparent in all aspects of patient care, and the team should strive to ensure that patients and families understand the roles of all team members. Integral to team-based care is the recognition of the role that patients and families play as key members of the care team. Shared decision making (i.e., communication process whereby patients and clinicians work together to make optimal health care decisions that align with patient values and preferences) and an emphasis on understanding the child and family’s beliefs and preferences can help to ensure deference and autonomy that are essential to family engagement and best outcomes. Payment models have traditionally involved fee-forservice transactions that often do not adequately support team-based care. In traditional payment models families may be required to pay multiple copays when interprofessional care is provided by multiple disciplines. In other settings billing may need to occur through one primary provider on the team, meaning that all other professionals who provided care are unable to submit a bill. These models pose obvious financial barriers to payers and organizations. Other considerations include the possibility of Stark law violations and other potential compliance issues. As such, interprofessional teams may need to consult with experts in billing, information technology, compliance, and/or health care law to ensure that these potential issues are addressed. Because of these financial challenges, team-based care is often supported by grants or in-kind contributions, but these types of patchwork payment models are often not adequate for growth or program sustainability. The transition from fee-for-service to value-based care may allow for innovations in payment models to better support teambased care (Katkin et al., 2017). Over the last several years, the Centers for Medicare and Medicaid Services (CMS) Innovation Center has prioritized the development of novel payment and service delivery models to support aspects of care that may not be adequately reimbursed in traditional payment models but can contribute to increased quality or

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SECTION 11 Societal and Legal Contexts of Developmental-Behavioral Pediatrics

reduced cost. While these payment models have, to date, been more feasible for the adult Medicare population, the CMMS Integrated Care for Kids (InCK) model has been developed to support community-based service delivery to improve prevention, early identification, and treatment of behavioral and physical health needs for Medicaid beneficiaries (https://innovation.cms.gov/innovation-models/ integrated-care-for-kids-model). Individual state Medicaid programs also have flexibility to develop and support teambased models through waiver programs and other funding streams. Ongoing advocacy is needed at the state and federal levels to ensure that team-based care be sustained and further developed.

CONCLUSION Children and families, health care and related professionals, and communities are hard at work to ensure high-quality, coordinated, and comprehensive care for patients affected by DB conditions. Evidence suggests that this type of care provides best outcomes and can reduce unnecessary health care costs. By coordinating care across professionals and across systems, team-based care can help to achieve optimal outcomes. However, existing barriers in training, practice, and payment must be overcome for these optimal outcomes to be realized. Team-based care requires the intentional focus of the patient/family as the center of care with a team of professionals, organizations, and agencies providing support and expertise. Interprofessional teams can be a formal program (such as a specialty Down syndrome clinic) or less structured, as in the case of an entire medical office whose staff and professionals work together to meet the complex needs of their patients and families. Regardless of team structure, certain principles can help guide teams toward optimal functioning. This intentionality applies to almost all aspects of team functioning, including physical space, communication practices, hiring, and billing/payment. By developing a system of care designed to support the values, beliefs, and preferences of children like Mya in the opening vignette and families, interprofessional teams and their members can realize their individual professional goals as well.

RESOURCES • TeamSTEPPS 2.0: https://www.ahrq.gov/teamstepps/index. html • Tips for debriefing in medical teams: Salas, E., Klein, C., King, H., Salisbury, M., Augenstein, J. S., Birnbach, D. J.,…& Upshaw, C. (2008). Debriefing medical teams: 12 evidence-based best practices and tips. The Joint Commission Journal on Quality and Patient Safety, 34, 518–527. • Guide to developing patient-centered team-based primary care: Schottenfeld, L., Petersen, D., Peikes, D., Ricciardi, R., Burak, H., McNellis, R., & Genevro, J. (2016). Creating patient-centered team-based primary care. AHRQ Pub. 16-0002-EF. Agency for Healthcare Research and Quality.

• Team-based Learning Collaborative: http://www.teambasedlearning.org/ • Leadership Education in Neurodevelopmental and Related Disabilities: https://www.aucd.org/docs/publications/brochures/lend_brochure_2020.pdf • Textbook on interprofessional care coordination for pediatric ASD: McClain, M. B., Shahidullah, J. D., & Mezher, K. (2020). Interprofessional care coordination for pediatric ASD: Translating research into practice. Springer. https:// www.springer.com/gp/book/9783030462949

REFERENCES American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Author. Berwick, D. M., Nolan, T. W., & Whittington, J. (2008). The triple aim: Care, health, and cost. Health Affairs, 27, 759–769. Bodenheimer, T., & Sinsky, C. (2014). From triple to quadruple aim: Care of the patient requires care of the provider. Annals of Family Medicine, 12, 573–576. Brinster, M. I., Brukilacchio, B. H., Fikki-Urbanovsky, A., Shahidullah, J. D., & Ravenscroft, S. (2022). Improving efficiency and equity in early autism evaluations: The (S)TAAR Model. Journal of Autism and Developmental Disorders (advance online publication). https://doi.org/10.1007/s10803-022-05425-1 Caine, K., & Hanania, R. (2013). Patients want granular privacy control over health information in electronic medical records. Journal of the American Medical Informatics Association, 20, 7–15. Felitti, V. J., Anda, R. F., Nordenberg, D., Williamson, D. F., Spitz, A. M., Edwards, V., Koss, M. P., & Marks, J. S. (1998). Relationship of childhood abuse and household dysfunction to many of the leading causes of death in adults: The Adverse Childhood Experiences (ACE) Study. American Journal of Preventative Medicine, 14, 245–258. Greene, C. A., Ford, J. D., Ward-Zimmerman, B., & Foster, D. (2015). Please break the silence: Parents’ views on communication between pediatric primary care and mental health providers. Families, Systems, & Health, 33, 155–159. Gunn, R., Davis, M. M., Hall, J., Heintzman, J., Muench, J., Smeds, B., Miller, B.F., Miller, W.L., Gilchrist, E., Brown Levey, S., Brown, J., Wise Romero, P., &, Cohen, D. J. (2015). Designing clinical space for the delivery of integrated behavioral health and primary care. Journal of the American Board of Family Medicine, 28, S52–S62. Hiefner, A. R., & Woods, S. B. (2019). Implementing integrated behavioral health: Testing associations between shared clinical time and space and provider referrals. Families, Systems, & Health, 37, 206–211. Hostutler, C. A., Valleru, J., Maciejewski, H. M., Hess, A., Gleeson, S. P., & Ramtekkar, U. P. (2020). Improving pediatrician’s behavioral health competencies through the Project ECHO teleconsultation model. Clinical Pediatrics, 59, 1049–1057. Interprofessional Education Collaborative (IPEC). (2016). Core competencies for interprofessional collaborative practice. Author. Katkin, J. P., Kressly, S. J., Edwards, A. R., Perrin, J. M., Kraft, C. A., Richerson, J. E., Tieder, J. S., Wall, J., & Task Force on Pediatric Practice Change. (2017). Guiding principles for team-based pediatric care. Pediatrics, 140, e20171489. Kohn, L. T., Corrigan, J. M., & Donaldson, M. S. (Eds.). (2000). To err is human: Building a safer health system. Institute of Medicine

CHAPTER 115  Interprofessional Team-Based Care (US) Committee on Quality of Health Care in America. National Academies Press. Kolko, D. J., Campo, J., Kilbourne, A. M., Hart, J., Skolsky, D., & Wisniewski, S. (2014). Collaborative care outcomes for pediatric behavioral health problems: A cluster randomized trial. Pediatrics, 133, e981–e992. Kruk, M. E. (2018). High quality health systems in the sustainable development goals era: Time for a revolution. Lancet Global Health, 6, e1196–e1252. Kuhn, C., Groves, B. K., Kaczor, C., Sebastian, S., Ramtekkar, U., Nowack, J., Toth, C., Valenti, O., & Gowda, C. (2019). Pharmacist involvement in population health management for a pediatric managed Medicaid accountable care organization. Children, 6, 82. Mazurek, M. O., Brown, R., Curran, A., & Sohl, K. (2017). ECHO autism: A new model for training primary care providers in best-practice care for children with autism. Clinical Pediatrics, 56, 247–256. McClain, M. B., Shahidullah, J. D., Mezher, K., Havercamp, C. R., Benallie, K. J., & Schwartz, S. E. (2020). School-clinic care coordination for youth with ASD: A national survey of school psychologists. Journal of Autism and Developmental Disorders, 50, 3081–3091. Meadows, T., Valleley, R., Haack, M. K., Thorson, R., & Evans, J. (2011). Physicians “costs” in providing behavioral health in primary care. Clinical Pediatrics, 50, 447–455. Porter, M., & Teisberg, E. (2006). Redefining healthcare: Creating value-based competition on results. Harvard Business School Press. Riley, A. R., Paternostro, J. K., Walker, B. L., & Wagner, D. V. (2019). The impact of behavioral health consultations on medical encounter duration in pediatric primary care: A retrospective match-controlled study. Families, Systems, & Health, 37, 162–166. Salas, E., Klein, C., King, H., Salisbury, M., Augenstein, J. S., Birnbach, D. J., Robinson, D. W., & Upshaw, C. (2008). Debriefing medical teams: 12 evidence-based best practices and tips. The Joint Commission Journal on Quality and Patient Safety, 34, 518–527. Salas, E., Zajac, S., & Marlow, S. L. (2018). Transforming health care one team at a time: Ten observations and the trail ahead. Group & Organization Management, 43, 357–381.

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Sarvet, B., Gold, J., Bostic, J. Q., Masek, B. J., Prince, J. B., JeffersTerry, M., Moore, C. F., Molbert, B., & Straus, J. H. (2010). Improving access to mental health care for children: The Massachusetts Child Psychiatry Access Project. Pediatrics, 126, 1191–1200. Schwartz, P. H., Caine, K., Alpert, S. A., Meslin, E. M., Carroll, A. E., & Tierney, W. M. (2015). Patient preferences in controlling access to their electronic health records: A prospective cohort study in primary care. Journal of General Internal Medicine, 30, S25–S30. Shah, R. P., Kunnavakkam, R., & Msall, M. E. (2013). Pediatricians’ knowledge, attitudes, and practice patterns regarding special education and individualized education programs. Academic Pediatrics, 13, 430–435. Shahidullah, J. D., Azad, G., Mezher, K. R., McClain, M. B., & McIntyre, L. (2018). Linking the medical and educational home to support children with autism spectrum disorder: Practice recommendations. Clinical Pediatrics, 57, 1496–1505. Shahidullah, J. D., Forman, S. G., Palejwala, M. H., Chaudhuri, A., Pincus, L. E., Lee, E., Shafrir, R., & Barone, C. (2019). National survey of chief pediatric residents’ attitudes, practices, and training in collaborating with schools. Journal of Interprofessional Education and Practice, 15, 82–87. Shanafelt, T. D., Boone, S., Tan, L., Dyrbye, L. N., Sotile, W., Satele, D., West, C. P., Sloan, J., & Oreskovich, M. R. (2012). Burnout and satisfaction with work-life balance among US physicians relative to the general US population. Archives of Internal Medicine, 172, 1377–1385. Shanafelt, T. D., Goh, J., & Sinsky, C. (2017). The business case for investing in physician well-being. JAMA Internal Medicine, 177, 1826–1832. Stange, K. C. (2009). The problem of fragmentation and the need for integrative solutions. Annals of Family Medicine, 7, 100–103. TeamSTEPPS 2.0. (n.d.). Agency for Healthcare Research and Quality. https://www.ahrq.gove/teamstepps/instructor/index.html West, C. P., Dyrbye, L. N., & Shanafelt, T. D. (2018). Physician burnout: Contributors, consequences and solutions. Journal of Internal Medicine, 283, 516–529. World Health Organization. (2008). Task-shifting: Global recommendations and guidelines. https://www.who.int/ workforcealliance/knowledge/resources/taskshifting_guidelines/en/

116 Ethical Considerations Peter J. Smith

VIGNETTE Your treatment team is seeing a 16-year-old boy with autism and mild intellectual disability. He is capable of conversational speech at a limited level. He is able to read and is able to complete most activities of daily living. His mother contacts your office to ask for a letter of medical necessity for a vasectomy. Upon further discussion, it is determined that he is having a urologic procedure (circumcision repair) and his mother would like to have the vasectomy performed at the same time. She expresses concerns that her son will never be able to raise a baby or be responsible for a child. She would like sterilization because reversible contraception is not an option for her son (given he is male and she believes that his using condoms is not likely). The urologist has agreed to perform the vasectomy; however, the hospital is now requiring further documentation for this surgery to be completed. She is asking for your help to pursue this surgical intervention. Although his mother informs you that he has consented to the procedure, it is unclear if he understands the implications of this decision. When asked whether he wants to have a child, he does not answer.

INTRODUCTION As illustrated in the opening vignette, by its nature, clinical care presents scenarios that require careful ethical analysis. Clinicians in developmental-behavioral pediatrics (DBP) must be prepared for such scenarios, which often present unexpectedly. This chapter will address ethics in three ways: (1) a brief review of several ethical systems, including terms used; (2) a review of experiences of individuals with disabilities and their implications for ethic systems today; and (3) a few suggestions that will be directed toward practical applications.

A BRIEF REVIEW OF ETHICAL THEORIES Principlism There are many different methods that fall under the word ethics. Currently in the United States the most commonly employed system of ethics used within medicine is called principlism. Principlism takes its name from its primary focus on 1096

foundational principles that are used to help navigate ethical dilemmas. The four main principles that are most commonly used in principlism are (1) respect for autonomy, (2) nonmaleficence (avoiding doing harm), (3) beneficence (actively doing good), and (4) justice (equal sharing of benefits and burdens) (Beauchamp & Childress, 2013). Ethicists are instructed in the meanings of these principles and taught how to use them, in dynamic balance, to make ethical decisions. The dominance of principlism in contemporary medical ethics is multifactorial. Historically, principlism was created and championed as a system that would correct the problems of a prior method of ethics, which was dominant in health care in the early 20th century, paternalism. Paternalism was a strategy that encouraged clinicians who are more informed about the medical facts to make decisions. Principlism, by emphasizing the need to allow individuals their autonomy to make their own decisions, shifted from emphasizing the doctor’s perspective to emphasizing the patient’s and family’s perspectives. Pedagogically, principlism is simply one of the easiest systems of ethics for instructors to teach because it can be quickly summarized by defining the main principles. Culturally, principlism is consistent with a libertarian cultural emphasis on the individual. However, there are many difficulties with principlism, especially how it is used in practice. It is formally taught that the four principles are equal and should be balanced when making decisions. In practice, respect for autonomy has dominated the other three because of its resonance with current cultural norms. The fourth principle, justice, is often forgotten, as witnessed by the history of clinicians and policymakers systemically ignoring minority groups, leading to systemic injustice, which only recently has been recognized by health care institutions as an ongoing problem. Of note, intersectionality of race and disability increase these injustices. In addition, the COVID-19 pandemic has dramatically illustrated the tension between respect for autonomy and justice, with arguments over mask mandates, closures, and vaccination becoming flashpoints around the world.

Natural Law Ethics A different system of ethics, which also uses guiding laws, is similar to principlism, except that these laws were deduced from observations of nature. Natural law ethics was formulated by Greek philosophers and Roman legislators. Because they were drawn from observations of nature, they were seen as objective. Its strength, theoretically, is that it carries the possibility of being a universal approach (Cahill, Haker, & Metogo, 2010); however, in practice, different cultures and

CHAPTER 116  Ethical Considerations

thinkers have observed nature and have come to different conclusions. People with disabilities are particularly at risk under this system because they could be judged as unnatural.

Virtue Ethics Another system of ethics that has both ancient roots and strong claims of universality is virtue ethics. Most cultures identify habits of action or thought that are seen as laudable and promote them within their culture. Greek philosophers such as Aristotle attempted to articulate these virtues. Later, Roman philosophers, especially the Stoics such as Cicero, also promoted patterns of behavior that were virtuous. Christian theologians, including Augustine of Hippo and Thomas Aquinas, developed their own systems to promote virtues. Augustine changed the Roman premise that reason is the foundation for virtues to a love of God as the foundation of his system. Aquinas agreed with the Greeks and Romans that virtues were primarily habits. Contemporary thinkers who promote virtue ethics specifically avoid trying to set up programs that promote virtuous actions. Instead, they work to create institutions and cultural norms that foster virtuous individuals. Overall, virtue ethics has been a system that has focused less on creating a guide for making difficult decisions and more on helping shape individuals who are good at making those decisions themselves (Porter, 2001).

Utilitarianism A modern system that was specifically an attempt to make ethics more like a hard science is utilitarianism. Jeremy Bentham and John Stuart Mill developed this system in the 19th century. They believed that the best action in any situation is the action that creates outcomes with the greatest mathematical ratio of value to disvalue. In popular culture the character Spock in the original Star Trek series famously illustrated use of this system. Utilitarianism only accounts for the actual consequences of an action, not the intention of the actor. The application of utilitarianism to disabilities reveals its inherent limitations and the risks such a system can pose to vulnerable populations. For example, using this system, some have argued that children with disabilities bring a net negative ratio of value to disvalue (measuring the happiness of the family overall) and therefore they should be terminated or even euthanized if they are already born (Singer, 1979).

Deontology An ethical system that was promoted by Immanuel Kant is called deontology. This system proposes that individuals or groups (or both) have duties, which then guide their decisions and actions. This is a system that is promoted by the golden rule, which can be phrased as “Act to others as you believe they should act toward you” (Kant, 1993). One of the pedagogic strengths of this system is that it is both simple to teach and to understand (Pellegrino, 1985). Critics of deontology suggest that with many ethical dilemmas, an individual who is struggling with a moral dilemma frequently has competing duties that are in tension (e.g., an individual may have duties related to the role as a physician that is in tension with duties related to the role as a family member to the patient).

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Casuistry Unlike the other ethical systems discussed, casuistry is not a group of foundational ideas but a method of making difficult decisions. The general process is to compare the current decision to be made with prior decisions or cases. Casuistry existed during the time of the Greek philosophers, and it peaked in popularity in the 16th and 17th centuries. Casuistry is a process that also informs many legal structures, as well as some decision making within governments and businesses (Jonsen & Toulmin, 1990). For example, famous cases are studied in business school so that students can learn from the prior experiences of others and therefore not repeat the same mistakes.

Narrative Ethics Narrative ethics is also a system that focuses on process. In it, stories of individuals or groups are reviewed to offer insight into the ways of being ethical. Telling a story to illustrate a deeper point is as old as human civilization, and its proponents argue that reasoning is only a partial method for becoming and acting ethical (Charon & Montello, 2002).

HISTORICAL EXPERIENCES OF INDIVIDUALS WITH DISABILITIES Unfortunately there are many historical examples of people and groups acting in a discriminatory fashion against individuals with disabilities. For example, Francis Galton, a cousin of Charles Darwin and an early researcher in genetics, created the term eugenics and promoted it as a way to improve society. There are two theoretical forms of eugenics: positive eugenics (promoting “good” genes in a population) and negative eugenics (removing “bad” genes from a population). Due to Galton’s influence, many thinkers and policymakers in the United States became eugenicists, and the country became the first to have laws promoting it, in the first half of the 20th century. Many states enacted laws that allowed for compulsory sterilization of individuals who were seen as having “bad” genes, including individuals with cognitive impairments. Eventually in 1927 the US Supreme Court ruled in favor of the practice, in their ruling of Buck v Bell. In his supporting opinion Supreme Court Justice Oliver Wendell Holmes Jr. wrote: We have seen more than once that the public welfare may call upon the best citizens for their lives. It would be strange if it could not call upon those who already sap the strength of the State for these lesser sacrifices, often not felt to be such by those concerned, to prevent our being swamped with incompetence. It is better for all the world, if instead of waiting to execute degenerate offspring for crime, or to let them starve for their imbecility, society can prevent those who are manifestly unfit from continuing their kind. … Three generations of imbeciles are enough. (Buck v. Bell, 274 U.S. 200 [1927], 1926) With the backing of the Supreme Court, compulsory sterilization became common in many states, and over 65,000 individuals were sterilized in 33 states under state compulsory

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SECTION 11

Societal and Legal Contexts of Developmental-Behavioral Pediatrics

sterilization programs in the United States. The last state sterilization was in 1981 in Oregon (Lombardo, 1985). In 1947 the New York State Department of Mental Hygiene opened the Willowbrook State School on Staten Island, which ultimately became a residential facility for children with intellectual disability. It was originally designed for a population of 4000, but it eventually held 6000 children. Because of crowding and neglect, the conditions at Willowbrook deteriorated and became filthy and unhealthy. Because of these conditions, hepatitis infections became nearly universal in the student population. Drs. Saul Krugman and Robert McCollum ran a study from 1956 to 1972 that attempted to describe the natural history of hepatitis in the poorly cared for population. As part of this study, they purposely infected new students by feeding them stool samples of children already known to have hepatitis. No consent was obtained from the families of the students they studied. Eventually, when the study was brought to light, it was terminated. A long legal process ensued and, eventually, the Willowbrook Consent Decree was finalized in 1975, officially closing the school (although the children were housed at Willowbrook until 1987) (Goode, Hill, Reiss, & Bronston, 2013). Like Buck in Buck v Bell, many of the children, after more thorough examination, were found not to have intellectual disability. In 1982 a child with Down syndrome was born in Bloomington, Indiana. The baby was found to have esophageal atresia, which had a well-established treatment protocol already developed. However, the family chose to turn down the curative surgical treatment and the child died. When the story became public, the US Surgeon General at the time, C. Everret Koop, a pediatric surgeon who had completed this surgery many times successfully, criticized the doctors who had allowed the baby to die. In 1983 the parents of a child born with myodysplasia, a condition that could be treated surgically, declined interventions. Subsequently, in 1984, Dr. Koop’s advocacy resulted in a federal law amending the child abuse regulations to include the withholding of known treatments from children with disabilities; these “Baby Doe Regulations” became active on June 1, 1985. Signs were posted in neonatal intensive care units and hotlines were created to allow anyone (staff, families, physicians) to report potential abuse; however, the Supreme Court struck down the regulations in 1986 (Merrick & Tenenbaum 2013). More recently, in 2006 an interdisciplinary team from Seattle Children’s Hospital published a single-case report about a child with intellectual disability who received a hysterectomy and bilateral mastectomy and high-dose hormones (estrogen). The goal of the protocol was to decrease the child’s eventual adult height so that she could remain living with her family for a longer time (the surgeries also were related to her daily care). The team had, prior to any clinical action, requested a review by the Seattle Children’s Hospital Ethics Committee, which did not stop the protocol. The parents of this child, who was named in their blog as “Ashley, The Pillow Angel,” promoted the protocol to other parents. The legal team in Washington that is commissioned to protect the rights of individuals with disabilities filed a suit against Seattle

Children’s Hospital, and the hospital eventually agreed that it had violated a state law that prohibits the sterilization of women with intellectual disability. As this brief review makes clear, multiple historical events and trends illustrate how society has stigmatized and marginalized individuals with disabilities. These events offer clear examples of how individual professionals and professional groups have disregarded their dignity through a trail of blatant abuses. Families, rights activists, and most importantly individuals with disabilities are the energy behind contemporary advocacy movements toward self-determination and the ability of people with disabilities to manage and direct their own lives. Professionals in the field of DBP have an opportunity to support these efforts. This growing sense of autonomy raises a number of dilemmas for clinicians and others who must balance an imperative to protect the health and safety of people with disabilities with a sense that people with disabilities are able to and should, where appropriate, make decisions that contribute to their sense of control of their own destiny. This is true when those decisions are contrary to what others believe are the healthy or safe choices, as it is for all of us. In modern health care clinicians, whose priority is to prevent disease and disability, must simultaneously elevate the status and independence of people with disabilities (Barnbaum, 2008).

SUGGESTIONS FOR PRACTICAL CONSIDERATION Clinicians who face ethical questions stemming from care of children with disabilities can benefit from a simple recognition of the prior mistakes and humble acceptance of systemic biases against this vulnerable population (Asch, Gostin, & Johnson, 2003). Of course, the biases are worsened by intersectional overlap with other aspects that result in bias, including race/ethnicity, socioeconomic status, and immigrant status. There are a few simple points that can be helpful.

A Few Practical Suggestions 1. Many ethical systems, due to their underlying assumptions about personhood or reason, are inherently biased against individuals with disabilities. 2. There is an unfortunately long history of clinicians who have mistreated individuals with disabilities, which must never be forgotten. 3. The general trend is an imperfect and incomplete movement toward greater acceptance, protection, and respect for individuals with disabilities. As noted, state laws that eventually responded to the eugenic movement were the exact laws used to help protect other children from the surgeries performed on Ashley as described above. 4. Experts in the field of DBP need to engage with the ethics committees at their institution and use their expertise to inform the work of these groups. Returning to the case of Ashley, the Seattle Ethics committee did not have any clinicians who were experts in the care of children with intellectual disabilities, which likely contributed to their admitted mistake.

CHAPTER 116  Ethical Considerations

CONCLUSION Ethics is a term that has been used in many different ways in many different contexts for millennia. There are varied systems of ethics in the Western experience (and more in other cultures and experiences). As illustrated in the opening vignette, clinicians in the field of DBP benefit from knowing about these different systems, and their strengths and weaknesses. Further, they will likely encounter clinical scenarios requiring careful ethical analysis and benefit from knowing the history of mistreatment of individuals with disabilities and the systemic biases inherent in some of the systems of ethics. Finally, experts in the field of DBP need to use their knowledge, skills, and attitudes to inform the professional ethicists who are too often unaware of the basics of caring for and respecting individuals with disabilities.

REFERENCES Asch, A., Gostin, L. O., & Johnson, D. M. (2003). Respecting persons with disabilities and preventing disability: Is there a conflict?. In S. Herr, L. O. Gostin, & H. H. Koh (Eds.), The human rights of persons with intellectual disabilities: Different but equal (p. 320). Oxford University Press. Barnbaum, D. R. (2008). The ethics of autism: Among them, but not of them (p. 190). Indiana University Press. Beauchamp, T., & Childress, J. (2013). Principles of biomedical ethics (7th ed.). Oxford University Press.

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Cahill, L. S., Haker, H., & Metogo, E. M. (Eds.), (2010). Human nature and natural law (Concilium). SCM Press. Charon, R., & Montello, M. (Eds.). (2002). Stories matter: The role of narrative in medical ethics. Routledge. Goode, D., Hill, D. B., Reiss, J., & Bronston, W. (2013). A history and sociology of the Willowbrook State School. American Association on Intellectual and Developmental Disabilities. Holmes, O. W., & Supreme Court Of The United States. (1926). U.S. Reports: Buck v. Bell, 274 U.S. 200. Jonsen, A., & Toulmin, S. (1990). The abuse of casuistry: A history of moral reasoning. University of California Press. Kant, I. (1993). Grounding for the metaphysics of morals (p. 30, 3rd ed.). Hackett. Lombardo, P. A. (1985). Three generations, no imbeciles: New light on Buck v Bell. New York University Law Review, 60(1), 30–62. Merrick, J., & Tenenbaum, A. (2013). Devaluation and people with intellectual disability. International Journal of Disability and Human Development, 12(1), 1–3. Pellegrino, E. D. (1985). The virtuous physician, and the ethics of medicine. In E. E. Shelp (Ed.), Virtue and medicine (p. 237–255). D. Reidel. Porter, J. (2001). Virtue ethics. In R. Gill (Ed.), The Cambridge companion to Christian ethics (p. 96). Cambridge University Press. Singer, P. (1979). Taking life: Humans. In Practical ethics (p. 186). Cambridge University Press.

117 The Pitfalls of Guardianship (Conservatorship) and the Promise of Alternatives Zoe Brennan-Krohn and Susan Mizner

For additional material related to the content of this chapter, please see Chapter 105.

VIGNETTE Emilia has been your patient for 10 years. She is 17 years old and is on the autism spectrum. Emilia sometimes communicates verbally, but usually prefers typing on an iPad or computer to relay her thoughts. She reads and writes at a fourth-grade level. She experiences ongoing digestive problems and has epilepsy that is well controlled with consistent medication. Emilia relies on her parents and her older sister for help in many areas. At least one of her parents has always come to medical appointments with her. Communication in appointments with Emilia is usually a mix of communication directly from Emilia and context and background from her parent(s). Emilia doesn’t drive, and you are not sure if she could travel independently on public transit. Two months before her 18th birthday, Emilia and her mother come to an appointment with you. Her mother tells you that they are considering getting a guardianship (in some states called a conservatorship) for Emilia when she turns 18. Emilia’s school has told them that guardianships are always a good idea for people with developmental disabilities, and that without a guardianship, the parents will not be able to go to her individualized education plan meetings and won’t be able to attend any medical appointments with Emilia once she’s turned 18. Emilia’s mother says she doesn’t know much about guardianships but that it seems harmless. She asks if you have any advice or suggestions. When you ask Emilia whether she wants her parents to become her guardians, she shrugs. What do you advise them? What else would you need to know before advising them?

OVERVIEW This chapter discusses the system where adults lose some or all of their rights or decision-making power based on a court order, which in most states is called guardianship. Terminology varies state by state for the system discussed in this chapter. In some states, including California, this system is called conservatorship. We do not discuss the concept of guardianship or custody of minors. We use the term guardianship throughout for simplicity. Clinicians, schools, and family members, like Emilia’s mother, often think that guardianship is a requirement for an individual with significant severe disabilities as she enters 1100

adulthood and that it is harmless. Clinicians may assume that guardianship is an efficient way to ensure informed consent and adequate care for an adult patient with intellectual or developmental disabilities. In this chapter we emphasize the risks of guardianship. We argue that guardianship is an extreme, often irreversible legal intervention that has significant lifelong consequences. We present many less intrusive options that can and should be tried. We recognize the challenges that many individuals with disabilities face in making decisions about health care, finances, and other important life areas. The alternatives we suggest are designed to provide the individual with meaningful guidance, support, reality checks, and protections. Because these and other alternatives often meet the goals of adult patients and their supporters, we recommend that guardianship be pursued only as a last resort. There are three scenarios in which guardianships are commonly sought or imposed: 1. A person with a significant developmental or intellectual disability turns 18 2. During or after a major mental health crisis for adults of any age 3. When an older adult experiences dementia or other agerelated cognitive disabilities This chapter focuses on guardianships and the alternatives to guardianship for young adults with developmental disabilities. However, the same principles apply to guardianship in other contexts. For more on guardianship and decision making in relation to other health and education issues, see Chapter 105.

WHAT IS A GUARDIANSHIP? Guardianship is a legal structure. Guardianships can only be created—or dissolved—by a judge (National Guardianship Association, 2021). Before imposing a guardianship, a judge must determine that an adult is, because of a disability, unable to make decisions about their own life. Based on this determination, the court removes decision-making authority from the person and appoints a guardian who has the legal power to make decisions for the individual. When a guardianship is imposed, it strips the person of virtually all civil rights and liberties. The US House of Representatives member Claude Pepper, in summarizing the findings of hearings on abuses in guardianship, described guardianship as “the most punitive civil penalty that can be levied against an American citizen, with the exception, of course, of the death penalty”

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(Chairman of the Subcommittee on Health and Long-Term Care of the Select Committee on Aging, 1987). The process for establishing a guardianship in the United States varies state by state. Generally, however, the guardianship process begins when someone (family member, clinician, nursing home) petitions the court to impose a guardianship on a person (American Bar Association Commission on Law and Aging, 2020a). That starts a process in which, in theory, the court gathers information about the proposed ward and the proposed guardian(s). This process often includes providing to the court medical, psychological, and social work evaluations (American Bar Association Commission on Law and Aging, 2020b). The guardianship issue is decided in a court proceeding in front of a judge. In many states the person at risk of guardianship is entitled to a lawyer to advocate for one’s preferences; in other states there is no such right. The criteria for imposing a guardianship also vary by state. Examples of criteria include a finding that the person is “unable properly to manage or care for their own person or property” (Del. Code. Tit. 12 § 3901[a][2]), or that a person “lacks capacity to meet at least some essential health and safety requirements” (Fla. Code § 744.102[12]). Most guardianship laws require, in theory, that guardianships should only be imposed if there are no “less restrictive” alternatives (American Bar Association Commission on Law & Aging, 2018). That means a judge should only grant a guardianship when it is determined that less-intrusive measures have been tried and are not working. Some states specifically identify “supported decision making” (discussed further later) as one such less-restrictive alternative to guardianship. Guardianships can, in theory, be limited in scope. For example, it is possible to take away rights in only some areas of an individual’s life (e.g., to enter into contracts or to govern financial decisions). In practice, however, courts most often impose plenary guardianships, in which the guardian is in charge of every decision for the individual (Jameson et al., 2015). Once a guardianship is established, the guardian has extraordinary power (Hardy, 2008). The guardian has the power to agree to or refuse medical care for the individual. The guardian can make decisions about where that person lives, whether the person can work, what religious services the person may or may not attend, what education the person may or may not receive, whether the person may or may not marry, whether or not the person has a child, what the person can spend money on, and with whom the person may or must spend time. Guardianships, once established, can only be terminated by a court.

WHY BE WARY OF GUARDIANSHIPS? Many clinicians may be inclined to agree with Emilia and her mother’s impression that guardianship is a routine, benign step, the default, especially where the patient has supportive and caring family members and relies on them for aspects of their care. In the opening vignette the clinicians have known this family for a decade and have seen her parents’ commitment to supporting her. There has never been any indication of abuse, neglect, or controlling behavior by her parents. So why not get an extra layer of protection from a guardianship?

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There are several reasons to be cautious of guardianship, and to encourage serious consideration of alternatives, even in cases like Emilia’s, where there is no reason to doubt the good intentions and care among all parties. These concerns encompass both practical and principled issues.

The Guardianship Will Outlast the Guardian, in Which Case the Court Holds the Control Emilia’s parents are seeking a guardianship in which they will be her guardians. They know her better than anyone in the world, they love her, they know they would only make choices in her best interests. But what they may not know is that Emilia’s guardianship does not guarantee that they will be the guardians, and that even if they are initially appointed as guardians the guardianship will not end when her parents are no longer able to serve in that role. Once a guardianship is in place, it is the court, not the guardians, who have the greatest power, including the power to choose who will be guardian. For example, suppose Emilia’s parents become her coguardians soon after Emilia turns 18. Three years later, her parents get divorced. The divorce is acrimonious and high conflict, and each parent asks the court to become Emilia’s sole guardian. The court considers these competing requests, and instead of choosing one parent or another, the judge decides to appoint a professional guardian in lieu of either parent. With the stroke of a pen, no one in Emilia’s family, including Emilia, has any authority to make any decisions for or with her. Emilia’s choices about her medical care, her money, her education, her entire life, are now in the hands of a stranger who does not know her, may be difficult to reach, may never meet her in person, and may have dozens or hundreds of other wards. Her professional guardian might decide Emilia would live best in a nursing home, away from her family and peers; or, her professional guardian might require Emilia to travel back and forth between her parents’ homes on a weekly basis, making it virtually impossible for her to keep a job or stable support systems. The same situation can occur if Emilia’s parents die or become unable to continue to serve as her guardians due to the disabilities that they may age into. The death or incapacity of the original guardians does not end a guardianship, and the judge will now select someone else to be Emilia’s new guardians. Again, this could very well be (and often is) a stranger (Jameson et al., 2015). These situations highlight the gap between perception and reality in terms of who has control in a guardianship. Parents may think they are keeping control (often with the best of intentions) by seeking a guardianship, when in fact they are giving control to a court. If there are ways that Emilia’s parents can support her without giving away all of her rights to a court, they should consider those.

Guardianships Do Not Necessarily Make People Safer; Self-Determination Can Make People Safer Unfortunately, some people seek guardianships for nefarious or illicit purposes of exploitation or abuse. However, most families seek guardianships as a tool to protect the person

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with disabilities. To make the decision about guardianship, it is critical for clinicians and families to be concrete and specific about what dangers they are trying to prevent with the guardianship. They need to be realistic about whether the guardianship in fact addresses those risks. It is also critical to consider what risks the guardianship itself creates. For instance, Emilia’s parents may worry that she can be too trusting of other people and at risk of exploitation. Like many people with autism, she has special interests (i.e., topics that she is particularly passionate and knowledgeable about). One of her special interests is airlines and air travel. She is fascinated by people wearing pilot or flight attendant uniforms, or people with airline security identification badges. Her parents fear that she could be exploited by anyone who engaged with her in this interest or worked in this field. It is critical to examine, and to encourage patients’ families to examine, whether there is a nexus between the problem (in this case, risk of exploitation) and the proposed solution (i.e., guardianship). The problem may well be a real one. But getting a guardianship gives the guardian a piece of paper and legal rights. The guardianship does not create a forcefield around Emilia to protect her from predators or bad choices. With or without a guardian, Emilia will still have to work with her parents or other supporters to learn about boundaries, to practice identifying situations that seem unsafe, and to be able to say no if she feels uncomfortable. Perhaps most importantly, she will need to learn how and when to ask for help. Everyone learns, albeit at different paces, how to navigate life, connect with others, exercise boundaries, and when to ask for help. Part of being human is learning to make choices responsibly, with help and guidance where needed, and where consistent with one’s values. Everyone learns this over the course of a lifetime by trial and error, and in our own ways. People with disabilities, like people without disabilities, are safest and happiest when they learn these skills in the way that is meaningful for them. A guardianship does not provide a shortcut to the security and knowledge of this process. But a guardianship can create a barrier that limits that development and create a false sense of security that such development is not necessary. Even people with high support needs, limited communication, or significant disabilities have and express preferences, and continue to learn and develop throughout their lives. Research consistently shows that people with disabilities have better subjective and objective life outcomes, including less risk of abuse, if they have greater self-determination (Powers et al., 2012; Shogren, Wehmeyer, Palmer, Rifenbark, & Little, 2015; Wehmeyer & Palmer, 2003). For people with significant disabilities, establishing and expressing boundaries, preferences, and autonomy may progress differently than for nondisabled people. However likes, dislikes, boundaries, and desires are expressed (whether through words, actions, or facial expressions), practice and experience expressing those preferences is shown to protect most against exploitation. People get better at protecting themselves, at saying no, when they have practice doing just that. People with disabilities may learn in very different ways, or at different speeds, than nondisabled people. Encouraging families to be skeptical of

guardianships does not mean disregarding a person’s disability and support needs, which may be considerable. But many support needs can be met without guardianship, and that should be encouraged. Studies show that the best way to learn how to interact safely in the world is with practice and experience. If Emilia has the experience of self-determination (practice expressing her wishes, her likes and dislikes, and having those wishes honored, discussed, and respected), then that is correlated with a lower risk of exploitation (Khemka, Hickson, & Reynolds, 2005). In many cases guardianship does not add anything to that work.

Guardianship Includes a Harmful Message It is important to acknowledge the impact of a guardianship on the person subjected to it. Choice is fundamental to who we are as humans. Expressing our likes and dislikes is core to being human, to being an individual. Many clinicians do not have enough time with their patients (especially their patients with significant disabilities) to learn what their patients enjoy, value, and give. People with significant disabilities who do not use formal language nonetheless express preferences through their actions, facial expressions, and other nonverbal cues. Even people who rely on others for significant assistance often provide affection, guidance, and insight to those around them. Most adults take for granted that we can choose what to eat, where and with whom to spend our free time, what clothes to wear, based on our preferences and principles. People under guardianship are told—by a court—that their preferences and likes and dislikes are not recognized, and that they are incapable of directing their own lives. This message is conveyed even if none of the practical risks of guardianship ever occur. In every guardianship there is a person who faces a judge; the judge states the person cannot make choices about one’s own life, and that someone else will make those choices (Kapp, 1992). This, itself, is a harm—to the individual and to society’s views of people with disabilities.

WHAT ARE THE ALTERNATIVES? Emilia’s parents have always been involved in her medical care. She takes medication daily to manage her epilepsy, and missing doses can cause seizures. She regularly sees specialists for her digestive concerns and follows a special diet that the family has developed, with physician advice, over the course of several years of trial and error that seems to minimize her gastrointestinal symptoms. She also regularly sees occupational, physical, and speech therapists. Her mother takes notes at all doctor appointments, tracks all tests and lab results, and schedules and drives Emilia to her appointments. Emilia’s mother says she cannot imagine Emilia managing these issues alone. She worries that without a guardianship Emilia would be left to fend for herself in navigating this complex range of supports and treatments. Emilia types on her iPad to you that she wants to have her parents keep helping her with complicated medical issues but that she wants to learn how to schedule and go to some appointments independently.

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Even when people recognize the risks and downsides of guardianships, they may believe—and may be told—that guardianship is necessary for important parts of a young adult’s life. Emilia, her parents, and her clinicians may all believe that without a guardianship she would be left alone to try to manage all of her medical and support care. If, as in this scenario, Emilia is not all alone and has family who are willing to support her, that should be taken into account and celebrated. Many situations that people think require guardianships can be easily addressed without guardianship.

Alternatives for Specific Scenarios For medical care, patients can sign documents such as a Health­ care Power of Attorney, an Authorization to Share Information, or a Health Insurance Portability and Accountability Act (HIPAA) waiver (see Additional Resources). Versions of these documents written in simple, accessible English are available online (see Additional Resources). These documents differ from a guardianship because they can be created, modified, or terminated without the involvement of a court. The control in these documents remains with the people involved. A Healthcare Power of Attorney authorizes another person to make decisions for the patient; an Authorization to Share Information and a HIPAA waiver both authorize another person to access information to make decisions with the person. Similar documents exist for educational decisions. A person can sign an authorization to share educational information to allow trusted supporters to continue to see school information. For financial issues, people with disabilities can get help from a relatively informal arrangement providing automatic bill paying, to an agreement to be a representative payee for social security or to have a power of attorney for finances. For any decision making, people with disabilities—just like people without disabilities—can invite trusted supporters to attend meetings and appointments with them. If an adult patient with a disability comes to an appointment with a parent, a clinician should ask if the patient is comfortable with the parent being there (this can be a simple verbal inquiry). If the patient confirms the support, then the clinician should honor this. For people with disabilities—just like for people without disabilities—using trusted supporters to help in complicated situations should be viewed positively.

Supported Decision Making Supported decision making is a broad term that encompasses but is not limited to the options discussed earlier. It is a tool that allows people with disabilities to choose supporters to help them make choices. Supported decision making recognizes that all people can and do rely on trusted advisors (family and friends) to understand, make, and communicate decisions, and recognizes that using supports is a good thing. Too often, if people with disabilities ask for help, or want to bring a parent to a doctor appointment, or seek other support, this request is used as evidence of incapacity. Supported decision making recognizes that using supports is a strength, and that if people use supporters appropriately

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and when needed that is a way to enhance their capacity and should be treated as such. Supported decision making allows people with disabilities to be explicit about the supports they wish to use, who they trust to help them make choices, and what help they want. People who use supported decision making should have their capacity (including capacity to give informed consent, to sign contracts, etc.) assessed with the supports they have. Supported decision making can be an informal, fluid process or a legally recognized and notarized document. As of this writing, 17 states have adopted supported decision-making laws that recognize it as an alternative to guardianship. Each state has a slightly different approach, but supported decision-making legislation provides a structure within which to create supported decision-making agreements that are legally recognized documents. Supported decision making can and should be implemented in any state, even in locations without formal legislative recognition. Supported decision making is a less-restrictive option than guardianship and can be used and recognized nationwide. Whether formally recognized and notarized, or entirely informally constructed, most supported decision-making agreements involve three steps: (1) a discussion of what choices need support, (2) a discussion of whom would be best to provide that support, and (3) a means of memorializing the agreement, and of the rules that may apply.

What Choices Need Support? To begin a supported decision-making process, individuals with a disability will want to discuss what choices they can make independently, which ones they need support for, and which if any they cannot do, even with supports. For example, when Emilia and her family sit down to talk, Emilia knows that there are areas where she does not need any supports. She can get herself washed, dressed, and ready in the mornings without any guidance or reminders. In other areas she has been getting support or had someone else meet the need for her. For example, her mother reminds her to take her medications, drives her to medical appointments, and makes any follow-up calls to pharmacies and specialists. In considering a supported decision-making agreement Emilia has the opportunity to consider—with her family’s support—whether the current arrangement makes sense. She may decide that she would like to try taking her medication on her own. She can make that part of her morning routine. Emilia may also decide that, instead of having her mother drive her to medical appointments, she would like her sister to help teach her how to take public transit. Because Emilia finds it most difficult to talk on the phone, she may decide that at least for now she wants her mother to continue to make the follow-up calls to pharmacies and specialists.

Obviously, there are many more areas of Emilia’s life that would also be useful to discuss. There are forms to help guide individuals through these conversations (see Additional

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Resources). The key to this discussion is thinking through three big buckets of decisions: (1) “I can do this alone,” (2) “I can do this with support,” and (3) “I need someone else to do this for me.”

How Does Supported Decision Making Differ From Guardianship? A major difference between supported decision making and guardianships is that supported decision making encourages individuals to widen their circles of support and keeps the person with disabilities as the person making decisions, with support as needed. A person under guardianship generally has one person (or one impersonal institution) making all decisions. With supported decision making, one supporter may provide support around medical decisions, another with finding the best living situation, and a third with finances. By widening the circle of engaged, involved supporters, supported decision-making arrangements have more built-in transparency, checks and balances, and informal (or formal) oversight than a guardianship, where extraordinary control is vested in a single person whose power can be virtually unchecked. (In a number of supported decision-making models if an individual needs support with finances, then a different person, a monitor, is also chosen to review the financial books once a month.) Many young people with disabilities express an interest in dating, but few young people want their parents to advise them on their love lives! So, a trusted sibling or friend may be the choice for whether and whom to date. Most supported decision-making models also take pains to remind the supporters that their role is not to make decisions for the person they are supporting. Their role may be to help an individual understand what the choice is, to help discuss the pros and cons of specific choices, and, if necessary, to help communicate the individual’s choice. They may also provide support through reminders or logistics. Unlike guardianship, the court does not decide who the supporter is or how long the supporter serves. It is the individual with a disability, and the supporter together, who decide how long the support will continue, what it will encompass, and when it may be time to choose someone else to step into the role. As Emilia continues to learn and develop skills and strengths in her early adulthood, there may be some areas where she no longer needs support over time or where the type of support or identity of supporters will change. This growth and development is built into supported decision making, which can and should evolve over time. By contrast, it is time consuming, costly, and sometimes functionally impossible to change a guardianship to reflect a person’s changing needs, skills, relationships, and preferences. What Does a Supported Decision-Making Agreement Look Like? States that have passed supported decision-making agreement legislation usually specify the format for a supported decision-making agreement in that state. The Internet also has a plethora of models (see Additional Resources).

In its most basic form a supported decision-making agreement outlines who the agreement is for, who each of the supporters are, and what area of the individual’s life each supporter will operate in. Sometimes a person will choose multiple supporters with overlapping roles. That is not only okay, it’s great. In supported decision making, as in any important matter, redundancy provides security. Most supported decision-making agreements are written in plain language, with short, simple sentences and pictures or symbols to help clarify sections. Many agreements also set expectations such as “We will meet as a team once a month” or set limitations such as “I do not want my support team to talk about me if I am not there.” Finally, most written supported decision-making agreements have a space for witnesses, and some find that having a Notary Public certify signatures provides an extra layer of legitimacy and protection, albeit an extra step and expense.

CONCLUSION As illustrated in the opening vignette, families of young adults are often pressured into seeking guardianship for a child with disabilities nearing adulthood, and many seek guidance from trusted clinicians in making important decisions about the transition to adulthood. Clinicians should be aware that while guardianship is sometimes presented as a benign intervention, guardianship is in fact usually an irrevocable removal of an individual’s civil liberties, choices, and personhood. Guardianships have serious negative consequences, even in the most supportive and caring families. In most cases alternatives to guardianship are available and preferable, especially when families think seriously about what issues they are hoping to address with guardianships. Simple verbal or written authorizations, powers of attorney, and the emerging model of supported decision making can all provide an individual with the infrastructure and supports they need to direct their own lives safely and meaningfully, without risking the deprivations of guardianships. Clinicians should ensure that they work with patients and their families to encourage disabled patients’ self-determination, autonomy, and civil liberties, including by encouraging patients and their families to explore alternatives to guardianship.

ADDITIONAL RESOURCES • ACLU, When Do I Want Support? Supported DecisionMaking Self-Assessment Tool: https://www.aclu.org/ other/how-make-supported-decision-making-agreement, or https://www.aclu.org/other/beyond-binary-using-supported-decision-making-lens-evaluating-competence • The National Resource Center for Supported Decision Making: http://supporteddecisionmaking.org/legal-resource/ supported-decision-making-model-agreements • Center for Public Representation, SDM and Health Care Decisions: https://supporteddecisions.org/getting-startedwith-supported-decision-making/sdm-and-health-caredecisions/ACLU, Authorizations to Share Medical and

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Education Records: https://www.aclu.org/other/authorizations-share-medical-and-educational-records-california-based • Autistic Self Advocacy Network (ASAN), The Right to Make Choices—Resource on Supported Decision Making: https://autisticadvocacy.org/2016/02/the-right-to-makechoices-new-resource-on-supported-decision-making/ • Center for Public Representation, US Supported DecisionMaking Laws: https://supporteddecisions.org/resourceson-sdm/state-supported-decision-making-laws-andcourt-decisions/

REFERENCES American Bar Association Commission on Law & Aging. (2018). Least restrictive alternative references in state guardianship statutes. https://www.americanbar.org/content/dam/aba/ administrative/law_aging/06-23-2018-lra-chart-final.pdf American Bar Association Commission on Law and Aging. (2020a). Capacity definition & initiation of guardianship proceedings. https://www.americanbar.org/content/dam/aba/administrative/ law_aging/chartcapacityandinitiation.pdf. American Bar Association Commission on Law and Aging. (2020b). Representation and investigation in guardianship proceedings. https://www.americanbar.org/content/dam/aba/administrative/ law_aging/chartrepresentationandinvestigation.pdf Chairman of the Subcommittee on Health and Long-Term Care of the Select Committee on Aging. (1987). Abuses in guardianship of the elderly and infirm: A national disgrace [brief]. 100th Cong. 1, H.R. Rpt. 100–641 (opening statement of Chairman Claude Pepper). https://files.eric.ed.gov/fulltext/ED297241.pdf

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Hardy, D. A. (2008). Who is guarding the guardians? A localized call for improved guardianship systems and monitoring. National Academy of Elder Law Attorneys Journal, 4(1), 1–34. Jameson, J. M., Riesen, T., Polychronis, S., Trader, B., Mizner, S., Martinis, J., & Hoyle, D. (2015). Guardianship and the potential of supported decision making with individuals with disabilities. Research and Practice for Persons with Severe Disabilities, 40(1), 36–51. https://journals.sagepub.com/doi/ full/10.1177/1540796915586189 Kapp, M. B. (1992). Geriatrics and the law: Patient rights and professional responsibilities (2nd ed.). Springer Publishing Co. Khemka, I., Hickson, L., & Reynolds, G. (2005). Evaluation of a decision-making curriculum designed to empower women with mental retardation to resist abuse. American Journal of Mental Retardation: AJMR, 110(3), 193–204. National Guardianship Association. (2021). What is guardianship? https://www.guardianship.org/what-is-guardianship/ Powers, L. E., Geenen, S., Powers, J., Summer, P. S., Turner, A., Dalton, L. D., … Swank, P. (2012). My life: Effects of a longitudinal, randomized study of self-determination enhancement on the transition outcomes of youth in foster care and special education. Children & Youth Services Review, 34(11), 2179–2187. Shogren, K. A., Wehmeyer, M. L., Palmer, S., Rifenbark, G. G., & Little, T. D. (2015). Relationships between self-determination and postschool outcomes for youth with disabilities. The Journal of Special Education, 48(4), 256–267. Wehmeyer, M., & Palmer, S. (2003). Adult outcomes for students with cognitive disabilities three-years after high school: The impact of self-determination. Education and Training in Developmental Disabilities, 38(2), 131–144.

SECTION 12 Conclusion

118 The Right to Belong, The Right to be Different Heidi M. Feldman, Ellen Roy Elias, Nathan J. Blum, Manuel E. Jimenez, and Terry Stancin

VIGNETTE Michael was honored to be invited to serve on the Consumer Advisory Board of the Office of Intellectual Disability within the County Department of Human Services. A 27-year-old man with Down syndrome, he had been a lifelong recipient of the agency’s services. He appreciated the chance to give back. His social worker asked him what might make him successful in this important role. Together, they decided he would have a mentor attend the monthly meetings with him. One of his favorite high school teachers accepted his invitation to serve as his mentor. Michael was inducted into the 20-person board with a physician, member of the clergy, social worker, and parent of a child with disabilities. At his first meeting, the director charged the board with revising the strategic plan. Michael sat at the corner of the square table; his mentor sat inconspicuously behind him, slightly back from the table. She periodically leaned in to check that he understood the discussion and to answer his whispered questions. When it came time to write strengths and weakness of various programs on sticky notes and place them on the appropriate easel pad sheet, Michael completed the task without assistance. His large, precise print and brief answers were easy for everyone to read. When discussion followed, Michael, with mentor encouragement, raised his hand and contributed pertinent comments. His speech was slow and intermittently dysfluent. However, over the course of the meeting, everyone at the table slowed their pace of speech. With the slower rhythm, they frequently acknowledged good points, asked for clarification when they did not understand, and let go of political maneuvering. They listened more and interrupted less. When the meeting concluded, the long-standing board members agreed it had been the best board meeting they had yet attended.

In this final chapter we, the editors, seek to summarize the content of this book within the framework of two of our overriding values and beliefs: the right to belong and the right to be different. We edited this edition of the text during the COVID-19 pandemic. It was a time of great political and social unrest, forcing us to confront vast inequities within the US population and across the globe—inequities based on race, ethnicity, income, ability, gender identity, sexuality, income,

and country; inequities in health care access and quality, education, social service, income, environmental conditions, and public safety. In this changing social, economic, and political context it seemed particularly important to emphasize the values that undergird our collective work. We value diversity, equity, and inclusion to achieve justice and fairness. We want to express our gratitude to the editors of previous editions of the text, pioneers in developmentalbehavioral pediatrics, whose earlier editions of the book not only defined the parameters of the field but who also articulated these values. We want to acknowledge the many patients and families whom we have served as clinicians in developmental-behavioral pediatrics. They inspired the vignettes that launch each chapter. We came to realize that their stories humanize the content, making research studies specific and general points memorable. We find that their stories stimulate empathy and compassion. Like Michael in the opening vignette of this final chapter, they remind us that unexpected gifts may come with a commitment to diversity, equity, and inclusion.

THE RIGHT TO BELONG Developmental-behavioral pediatrics involves evaluating and treating children, adolescents, and youth who have differences in relation to age-matched peers, either in terms of developmental skills, behavioral profile, physical appearance, family circumstances, psychosocial history, or (often) a combination of these features. These children may be diagnosed with neurodevelopmental conditions, such as attention-deficit/hyperactivity disorder (see Chapter 46), cerebral palsy (see Chapter 39), or genetic disorders (see Chapter 24). They may demonstrate variations in temperament (see Chapter 80), learning style (see Chapter 47), gender identity (see Chapter 75), or sexual orientation (see Chapter 74). Historically, many of these children were excluded from mainstream settings, such as general education and competitive employment (see Chapter 1). Still today, despite legal protections (see Chapters 112–114) and changing community norms, many children and adolescents, like those discussed in these chapters, and their families experience social isolation, ostracism, ridicule, and/or bullying. 1107

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SECTION 12  Conclusion

Children with neurodevelopmental differences are more likely than other children to be economically disadvantaged or to come from minoritized groups. They face the harmful effects of social bias and institutional racism (see Chapter 20). They often experience elevated levels of social and physical stress (see Chapter 56). The construct of intersectionality captures the overlapping and interdependent systems of discrimination and disadvantage that affect these children and families. We believe that the children discussed in the chapters of this text have the fundamental right to belong in our families, classrooms, neighborhoods, workplaces, and communities. Human society benefits from diversity. Our community is enriched through the full participation of individuals, like Michael in the opening vignette, with a wide range of life experience, skills, knowledge, and backgrounds. Diversity brings distinct and new perspectives to our social groups. It can encourage creativity, improve communication, and stimulate empathy. But more than any single advantage we could list, including children who represent the diversity of the human condition is simply the fair and just thing to do. It acknowledges that we share a common humanity. There remains a great tension between societal appreciation for human diversity and the expectations that people will conform in appearance, ability, attitudes, and beliefs. Impatience and intolerance are common responses to human variation. For example, adults often expect that children will learn to read with a single educational approach, without regard to their personal circumstances and history, distinctive temperaments (see Chapter 80), learning styles, and cognitive abilities (see Chapters 40 and 47). Before the pandemic, we educated children within large and often noisy classrooms, with limited individual attention and few accommodations. During the pandemic, we rapidly shifted to online, remote education. We expected all children to learn equally well in virtual classrooms. We did not consider how children would do without the benefit of multisensory approaches, close relationships with teachers and other adults, and easy access to friends. We continued to expect children to learn without any accommodations for the vast differences in their social situations, including the amount of food in the cupboard, the warmth of their homes, the relationships among their family members, and the ability of their parents or siblings to help them with homework. During the pandemic, we expected children to participate in online education without sufficient regard for the availability of adequate computer devices and the quality of their broadband wifi network (see Chapter 21). We often failed to develop strategies to make it possible for children to participate in and benefit from education, even as the circumstances of education shifted widely. In the spirit of equity we need to build an educational system that works for all children. We also need to build a health care system that works for all people, including those with long-term or serious illness and disability. Medical care, especially for children with medical complexity (see Chapter 59), often fails to meet the children’s needs. It is characterized by severe workforce shortages, poor coordination, high expense, and difficulties with access. Children are often underinsured or have public insurance that is not universally accepted (see Chapter 114). As

a result, these children have multiple unmet needs, compromising their ability to belong. Parents make accommodations for their children with neurodevelopmental differences. Many report that they cut back their work hours or quit their jobs to meet the needs of their children. This sacrifice may result in reduced family income. Parents often find themselves assuming the roles of service coordinator, advocate, nurse, teacher, therapist, and caregiver. Parents may need to cope with the emotional consequences of having a child who is different, including their own sense of sadness, isolation, fear, worry, and sometimes anger. These emotions may adversely affect the relationship between parents and their children (see Chapters 12 and 13) and parents and their medical clinicians and service providers. Other family members, particularly siblings (see Chapter 12) may also be impacted. We need to build systems to support children and families so that they belong, remain healthy, and participate fully in family and community life. In the current era many countries have adopted legal protections that confirm the right to belong and offer protections against prejudice and isolation (see Chapter 112). The Universal Declaration of Human Rights, adopted on December 10, 1948, by the General Assembly of the United Nations, proclaims that “all human beings are born free and equal in dignity and rights. They are endowed with reason and conscience and should act towards one another in a spirit of brotherhood.” The 30 articles of this document remain the standard for human rights and serve as the foundation for national legislation. In the United States (see Chapter  112), P.L. 101-336, commonly known as the Americans with Disabilities Act (ADA), prohibits discrimination against individuals with disabilities in the workplace and allows for accessibility in public transportation and in public accommodations (e.g., stores, restaurants, and public buildings). The legal foundation for a free and public education for all is the Individuals with Disabilities Education Act (IDEA) (see Chapter 113). It mandates a free and public education for all children with disabilities in the least restrictive environment. Yet, the right to belong remains tenuous. Legal protections in the workplace and public accommodations, and the right to a free and public education in the least restrictive environment, remain subject to the political will of the nation. Threats to these laws arise regularly. Special education (see Chapter 104), for example, may be presented to the public as an unnecessary financial burden on a community rather than as a civil right. This attitude is particularly short sighted. Though approximately 10% to 20% of schoolchildren receive special education, these supports are far less costly than the outcomes of limited opportunity and neglect, including underemployment, incarceration, institutionalization, and the cycle of poverty. Nonetheless, public programs, including public education, remain underfunded. We, the editors, recognize that to support equity and inclusion, we must confront our own assumptions and biases. Moreover, we must eliminate social and institutional barriers to belonging. We know that to achieve equity, some individuals and their families will need more resources, supports, and services than others will require. In addition to serving

CHAPTER 118  The Right to Belong, The Right to be Different

individuals, we commit to advocating for those supports and services as components of a just and fair society where children with differences and their families fully belong.

THE RIGHT TO BE DIFFERENT Management and treatments in developmental-behavioral pediatrics are often designed to help children to function as well as possible in their family, school, or community. Many modalities of treatment are available, including counseling (see Chapter 91), behavior management (see Chapter 93), psychopharmacologic interventions (see Chapter 99), cognitive-behavioral therapy (see Chapter 98), occupational and physical therapy (see Chapter 106), speech-language pathology (see Chapter 107), and art and music therapy (see Chapter 108). A casual reading of this book might suggest that the professional clinicians in this field seek to normalize children to an implicit idealized version. We, the editors, want to reaffirm “the right to be different.” We believe that the focus of management and treatment in developmental-behavioral pediatrics is enhancing a child’s functioning rather than correcting a difference. Clinicians must be humble, cautious, and self-reflective when we design management plans and treatments for children who are different. Advances in genetics, pharmacogenomics, medical and surgical interventions (see Chapter 23), and care of the complex child (see Chapter 59) have drastically changed the course of care for many children with developmental disabilities. Despite these improvements, including dramatically increasing life expectancy, health care does not cure many of the conditions we care for in developmental-behavioral pediatrics. We must remain aware that our well-meaning attempts to offer treatments may result from complex motivations and that many interventions bring potential adverse effects. We can often support an individual through simple means. In the opening vignette the keys to success for Michael were a mentor and a change in the expectations and behaviors of the rest of the board. We can model acceptance and respect as the foundation of any treatment plan. The goal of enhancing function may encompass one or more domains of function, as described in the International Classification of Function, Disability, and Health (see Chapter 1), including learning and academic performance, mobility (see Chapter 106), communication (see Chapter 107), social relationships, work, and community life. Even then, however, it can be difficult to determine what is and is not an appropriate target of treatment. We should look to the families, and as soon as they can participate, to children or adolescents, to define for us what they most wish for to ensure the best quality of life. Counseling (see Chapter 91) and individual psychotherapy (see Chapter 96) can raise significant ethical questions. To what extent is the therapeutic counseling designed primarily to edge the child toward uniformity and conformity? How do we ensure that therapists do not superimpose their own values on naive children? How much should parents and therapists press the development of social skills for a youngster who prefers to be alone? If a child has gross motor delays or is clumsy and shows little or no interest in sports, how

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important is physical therapy or adaptive physical education for the child? Even among children with minimal differences from the norm, when could they be allowed to determine their own academic and recreational direction? Though we may provide management and treatments to improve a child’s functioning, at the same time, children should be afforded the right to specialize. When families were large, it was not unusual for each child to assume a different adult role. We tolerated, even expected, this diversity. In an era of small family size we want our one or two children to successfully fill many different roles and expectations. Children may need help in resisting the overriding drive of adults to make them good at almost everything. At the very least, one should pause when a youngster about to undergo therapy protests, “You know, I like who I am.” We must modulate our zeal to help children to function in a complex society and respect their individuality. We must balance encouraging exploration, excellence, and change with support and acceptance. We must contribute to making all children feel valued for who they are. The inadequacies of service, fiscal, and social supports for families caring for children with severe disabilities in the home may prompt a great desire for change. The “right thing to do” may not be straightforward. The rights of children with disabilities must be balanced with the interests of the adults who take care of them (see Chapter 117). The use of psychoactive medications (see Chapter 99), for example, may quickly alleviate challenges in raising or educating a child with atypical behaviors; however, families need to weigh that option against a child-focused program of primary assistance in behavioral adaptation. Parents must try to come to a decision that balances the child’s best medical interest and the family’s needs and resources. The use of stimulant medications for children with inattention and hyperactivity (see Chapters 46) is also controversial. When is the use of stimulants correcting a neurobiologic condition and when is it enhancing performance? What should we do when a family rejects the option of using medication if the alternative is placement of that child in a restricted educational environment or repetition of the grade? Open dialogue among all parties, importantly including the child or adolescent and, if necessary, an impartial representative of the child, might help with such difficult decisions. The tension between acceptance of difference and push for change can affect entire groups as well as individuals. These days, groups may resist the pull toward integration and normalization. For example, the Deaf community (see Chapter 42) appreciates the resources and protections it has received under ADA regarding telecommunications. Special communication devices such as teletypewriter machines (TYY) were mandated for individuals who are deaf or hard of hearing, making communication with others far easier than it had been. However, in the medical arena, cochlear implantation has become routinely available (see Chapter 42). This technology is akin to a prosthesis that can allow some degree of hearing in individuals with profound hearing impairment. Whether or not to have a child with congenital deafness get a cochlear implant has become a highly contentious issue. The

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SECTION 12  Conclusion

Deaf community, the capital letter here very important, does not conceptualize hearing impairment as a disability. Rather, it defines deafness as a community or culture, with its own language (American Sign Language), history, humor, values, and beliefs. Thus many individuals who are Deaf choose not to have cochlear implantation for themselves or their children. We can ask who should decide about the cochlear implant for a deaf child of Deaf parents? Likewise, individuals with various forms of skeletal dysplasia have come together and formed a vibrant group known as the Little People of America. They advocate for accessibility in the workplace and in the community. They welcome modifications that allow them to drive and work within the community. However, they often choose to have children with other members of their group with short stature, a decision that often results in another generation with skeletal dysplasia who also require accommodations at home and in the workplace. The neurodiversity movement has taken hold since the last edition of this textbook. On the one hand, the movement views individuals with autism (see Chapter 41) and other cognitive impairments, such as learning disabilities (see Chapter 47), simply as folks who fall within the wide range of normal human ability and behavior. The movement embraces the view that these conditions represent a complex combination of strengths and challenges. It encourages self-advocacy. It urges employers to recruit workers with autism and related conditions and to accommodate them in the workplace. At the same time, proponents want neurodiversity to be rec­ ognized as a disability within the context of employment so that individuals can enjoy the protections against discrimination and receive accommodations based on disability (see Chapter 112). Similar issues arise regarding decisions about education placement. The least restrictive environment is usually interpreted to mean that children with learning disorders and other educational needs receive their education alongside typically developing children in a general educational environment (see Chapter 113). The effect of IDEA on children with developmental disabilities has been incalculable in terms of minimizing differences on many levels (see Chapter 1). Moreover, typically developing children who grow up with

children with learning differences and disabilities alongside them in the classroom become more accepting of differences, and more able to see the “person” with a disability, rather than the disability itself compared to peers without this educational experience. However, some parents insist on placing their children in specialized classrooms or programs. They may worry that their children will not be adequately educated if they are a minority in the classroom. Others have seen their children ridiculed or bullied in those regular education settings. Yet others base their decisions on the actual schools and communities in relation to their child’s preferences and abilities. It challenges us when two of our fundamental beliefs— inclusion and personal choice—conflict with one another. How should we come to a decision about educational placement when the family and the professionals disagree? How can we arrive at consensus? How can we monitor the impact of our decisions to adjust, if necessary?

A FINAL WORD In conclusion, the vast variations in human presentation delineated in this book can be considered the products of the array of phenotypic, genotypic, socioeconomic, cultural, political, and individual circumstances that characterize our species. The concept of normal or average is statistically perceivable but often subject to political inducement, and it is assuredly irrelevant on many occasions. We are heartened by changes in the values, attitudes, and beliefs of large swaths of the public to champion individuals’ right to belong and right to be different. We are grateful for changes in the practices of many clinicians who work with individuals with differences, providing care and support that facilitate participation and celebrate individuality. Yet, we have much to learn in this process. We must challenge ourselves to face our biases, uncover assumptions, open our hearts, and adjust our old ways. We must inspire our family members, coworkers, and friends to do the same. As members of developmental-behavioral pediatrics, we pledge to work to promote equality and acceptance even as we recognize and appreciate the value of individual differences. Please join us in a commitment to opening doors, making space, listening with compassion, serving, and welcoming all within our communities.