A Practical Guide to Autism: What Every Parent, Family Member, and Teacher Needs to Know [2 ed.] 1119685672, 9781119685678

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A Practical Guide to Autism

A Practical Guide to Autism What Every Parent, Family Member, and Teacher Needs to Know

Second Edition

Fred R. Volkmar, MD Director of Yale University Child Study Center and Iriving B. Harris Professor of Child Psychiatry, Pediatrics and Psychology at Yale University School of Medicine, New Haven, CT, USA

Lisa A. Wiesner, MD Licensed Pediatrician and Assistant Clinical Professor of Pediatrics at Yale University, New Haven, CT, USA

This edition first published 2021 © 2021 John Wiley & Sons, Inc. Edition History John Wiley & Sons, Inc. (1e, 2009) All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, except as permitted by law. Advice on how to obtain permission to reuse material from this title is available at http://www.wiley.com/go/permissions. The right of Fred R.Volkmar and Lisa A. Wiesner to be identified as the author(s) of this work has been asserted in accordance with law. Registered Office(s) John Wiley & Sons, Inc., 111 River Street, Hoboken, NJ 07030, USA Editorial Office 111 River Street, Hoboken, NJ 07030, USA For details of our global editorial offices, customer services, and more information about Wiley products visit us at www.wiley.com. Wiley also publishes its books in a variety of electronic formats and by print-on-demand. Some content that appears in standard print versions of this book may not be available in other formats. Limit of Liability/Disclaimer of Warranty While the publisher and authors have used their best efforts in preparing this work, they make no representations or warranties with respect to the accuracy or completeness of the contents of this work and specifically disclaim all warranties, including without limitation any implied warranties of merchantability or fitness for a particular purpose. No warranty may be created or extended by sales representatives, written sales materials or promotional statements for this work. The fact that an organization, website, or product is referred to in this work as a citation and/or potential source of further information does not mean that the publisher and authors endorse the information or services the organization, website, or product may provide or recommendations it may make. This work is sold with the understanding that the publisher is not engaged in rendering professional services. The advice and strategies contained herein may not be suitable for your situation.You should consult with a specialist where appropriate. Further, readers should be aware that websites listed in this work may have changed or disappeared between when this work was written and when it is read. Neither the publisher nor authors shall be liable for any loss of profit or any other commercial damages, including but not limited to special, incidental, consequential, or other damages. Library of Congress Cataloging-in-Publication Data A catalogue record for this book is available from the Library of Congress Paperback ISBN: 9781119685678; ePub ISBN: 9781119685807; ePDF ISBN: 9781119685791. Cover image: © gollykim/Getty Images Cover design by Wiley Set in 11.5/14.5pt of BemboStd by Integra Software Services Pvt. Ltd, Pondicherry, India 10 9 8 7 6 5 4 3 2 1

To our Children Lucy and Emily Our son-in-law Brian Pete And our Grandson Henry

Contents PREFACE TO THE 2ND EDITION 

ix

CHAPTER 1

An Introduction to Autism

1

CHAPTER 2

Getting a Diagnosis21

APPENDIX 1

Understanding Assessment Results

CHAPTER 3

Overview of Educational Programs and Interventions45

CHAPTER 4

Securing Services

71

CHAPTER 5

Infants and Young Children with ASD

89

CHAPTER 6

The School-Age Child With ASD

CHAPTER 7

Adolescents and Adults on the Autism Spectrum135

CHAPTER 8

Medical Care155

CHAPTER 9

Safety173

CHAPTER 10

Sleep and Sleep Problems185

CHAPTER 11

Sensory Issues

CHAPTER 12

Behavioral and Mental Health Problems207

CHAPTER 13

Considering Medications for Behavior and Mental Health Problems225

CHAPTER 14

Considering Complementary, Alternative, and Emerging Treatments243

CHAPTER 15

Supporting Families257

43

109

197

APPENDIX 1: GLOSSARY269 INDEX283 vii

Preface to the 2nd Edition

I

t has now been over a decade since the first edition of this book appeared. During this time the volume of research and clinical work has increased and there have been important advances in applying research knowledge to intervention so that the body of what we now can consider evidence-based treatment has dramatically increased. As with the previous edition, we aim to provide parents, family, and teachers with information that we hope will help them get the best possible care for their child or the children they work with. The two of us approach this from slightly different perspectives. One of us, Fred Volkmar, is a child psychiatrist whose main area of clinical work and research has focused on autism for the past 40 years. The other, Lisa Wiesner, is a pediatrician who has seen children with autism and other disabilities in her pediatric practice. In addition to bringing our professional perspectives to the book, the two of us are married and parents of two children, and are now grandparents as well. We hope that this book will provide parents and teachers of individuals with autism and related disorders some practical and useful information. As with the first edition, our aim is to provide an understandable guide to what we feel are the most important things for parents and teachers to know. We try, as much as possible, to refer readers to relevant materials, both books/chapters and research papers.We have tried, as much as we can, to stick with resources that are readily available and written in ways that parents as well as professionals can understand. With the growth of research the sheer volume of work has become somewhat mind-boggling! As of the date of this writing (in Spring 2021) a quick internet search for autism as the keyword yields about 230,000,000 hits. Even if you limit yourself to peer-reviewed papers (presumably the highest quality information) there are about 40,000 papers and this is not counting many outstanding books, chapters, websites, and other resources. As a result we have had to be selective in what we include. We have tried to give a reasonable sample of the best things available and also to consider the things parents and teachers need to know. In updating the book we have been mindful of feedback we’ve received from parents and teachers and have tried, as much as we can, to shorten the book by reducing the number of features and eliminating some that we were told weren’t as helpful. As we said in our preface to the first edition, we are very much aware that, for parents, the rewards of raising a child with an autism spectrum disorder are just as great as for any other parents. However, the challenges can be more daunting because parents have to take the child’s difficulties into account in almost all decisions made about their education and health care. Keep in mind that in this book we are trying to provide important general information that will help parents and teachers provide good care. This book can’t (and won’t) substitute for having a good working relationship with the various professionals who can advise about what is best for their particular child. This book will supplement but does not replace the need for the child and family to have an ongoing relationship with educators, ix

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PREFACE TO T H E 2N D EDI T I O N

health and mental health care providers, and legal professionals who know the child and specifics of the situation very well. Laws, for example, can vary significantly from state to state, and this knowledge may be important as parents and others think about long-term planning. Similarly, keep in mind that while we’ve made every effort to be accurate and up to date, knowledge changes over time, and with the increasing amount of research on autism, the pace of research has increased so new medications, research findings, and treatments will inevitably emerge over the months and years ahead. In considering any intervention, it is always important to weigh the risk against the possible benefit of the intervention. As the saying goes, “The perfect is sometimes the enemy of the good.” That is, sometimes it is better not to strive for perfection but for reasonable care and quality of life. As discussed in this book, many new treatments for autism also periodically become available. Sometimes these are well evaluated scientifically. Unfortunately, much of the time they are not. In a later chapter in this book, we will review some of these treatments and discuss how parents and teachers can make informed decisions about using them. Each chapter has a list of references, reading, and resources. Many others are available as well. We encourage parents and educators to become familiar with quality online search sites like PubMed® for much of the basic and clinical research, and ERIC (eric.ed.gov) for educational information. We have highlighted specialized terms the first time they appear in the book and then have tried to give short definitions of all of them in the Glossary. We are very grateful to a number of our colleagues who have reviewed parts of this book in our efforts to make it helpful to parents. We have profited from their wisdom and comments. They include Leah Booth, Nancy Moss, Rhea Paul, Michael Powers, Brian Reichow, Kimberly Bean, Kari Sassu, Meghan Brahm, Barbara Cook, Lauren Tucker, Roald Øien, and Bogdan Zamfir. Attorney Brian Pete provided help with some issues relative to work place supports under the ADA, and attorneys Lisa McCauley Parles and Judith Weinstock commented on the services chapter. We also thank support staff, including Monica Podles at Yale University, and Eileen Farmer at Southern Connecticut State University. We also thank the student assistants at Southern, Sam Tolkin and Meaghan Reilly, for their support including legwork in tracking down some references. We also thank our various colleagues who kindly allowed us to reprint, sometimes with modifications, materials from other sources, particularly the Handbook of Autism. We are grateful to our new editor at Wiley, Monica Rogers, and to our copy editor Karen Weller, who both did a wonderful job in helping us get each chapter into shape. Finally, we thank our children, who have taught us much about child development, and, of course, our patients and their families, who have taught us much about autism. Fred Volkmar, MD Lisa Wiesner, MD

CHAPTER

1

An Introduction to Autism What Is It and How Do We Understand It? What Is Autism? There are many ways to talk about autism. Perhaps the simplest one is to think of autism as a social learning disability. Like other “hidden” learning disabilities/differences (e.g., reading problems/dyslexia) it is not immediately apparent just by looking at the child. The reason autism is so significant is that if you don’t learn from others from the first days of life you really lose out on many important things. Given a lack of interest in people and social interaction, many early processes don’t come into play; for example, you don’t engage in joint attention (not looking where and at what your parents are looking at, thus missing out on what is important), you don’t engage in what is called incidental learning (learning by watching) or imitation. If you don’t “play the social game” you have trouble multitasking and organizing the world (what psychologists call executive functioning). Unlike other infants you don’t go rapidly back and forth between different aspects of the world, what the person is saying, doing, how the person is feeling, what the tone of voice or gestures tell you.You do not like change.You easily develop unusual interests in things—particularly if they are stable and unchanging like street signs, alphabet letters, or hood ornaments on cars. This lack of interest in others also means you have less interest in understanding what they say and feel, and as a result you have less interest in communicating and less ability to understand and communicate feelings, wants, and needs. These problems get even worse as you go to school and are expected to sit in a chair and share attention with other children focused on a teacher! This is a simple (but not incorrect) way to start thinking about autism. Of course, things are much more complex than this, particularly when you discover that there can be a broad range of outcomes in autism—the child who sits and body rocks and rarely talks, all the way to the overly talkative adolescent who wants to talk to you about his toaster collection! The pervasiveness of autism leads to major difficulties in efficient learning.This chapter gives some background on autism and related autism spectrum disorders (ASDs) and sets the stage for more detailed explanations later on in the book

When Was Autism First Recognized

as a

Disorder?

The recognition of autism as a disorder is a pretty recent one—the disorder was first described in 1943 but not “officially” used as a diagnosis until 1980. Other conditions such as Asperger’s disorder were “officially” recognized even more recently. Given that our understanding of autism and related 1

2 

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an introduction to autism

c­ onditions has changed, you may hear many different terms used to describe your child’s difficulties. Because knowledge has changed over the years there are also some misconceptions about autism that persist and that you may encounter (particularly among people who haven’t kept up with the field!). Finally, if you are looking at this book you are probably wondering if a child you know has autism—we think it would be helpful to you to know something about autism and the autism spectrum. Autism also known as autistic disorder, childhood autism, or infantile autism and now as autism spectrum disorder (all the names mean more or less the same thing!) was first described as a medical condition by Dr. Leo Kanner back in 1943. Dr. Kanner, the first child psychiatrist in the country, reported on 11 children who appeared to exhibit what he called “an inborn disturbance of affective contact.” By this he meant that, in contrast to normal babies, these children came into the world without the usual interest in other people. This was in contrast to normally developing babies for whom people are the single most interesting things in the environment. He believed that the difficulty in dealing with the social world was congenital in nature that is the children were born with it. Dr. Kanner gave a careful description of the unusual behaviors these first cases exhibited. He discussed at great length some of the unusual behaviors they exhibited (see Box 1.1). BOX 1.1  KANNER QUOTE

The outstanding, “pathognomonic,” fundamental disorder is in the children’s inability to relate themselves in the ordinary way to people and situations from the beginning of life. Their parents referred to them as having always been “self-sufficient”; “like in a shell”; “happiest when left alone”; “acting as if people weren’t there”; “perfectly oblivious to everything about him”; “giving the impression of silent wisdom”; “failing to develop the usual amount of social awareness”; “acting almost as if hypnotized.” This is not, as in schizophrenic children or adults, a departure from an initially present relationship; it is not a “withdrawal” from formerly existing participation. There is from the start an extreme autistic aloneness that, whenever possible, disregards, ignores, shuts out anything that comes into the child from outside. Direct physical contact or such motion or noise as threatens to disrupt the aloneness is either treated “as if it weren’t there,” or, if this is longer and sufficient, resented painfully as a distressing interference. This insistence on sameness led several children to become greatly disturbed upon the sight of anything broken or incomplete. A great part of the day was spent in demanding not only the sameness of the wording of a request but also the sameness of the sequence of events. The dread of change and incompleteness seems to be a major factor in the explanation of the monotonous repetitiousness and the resulting limitation in the variety of spontaneous activity. A situation, a performance, a sentence is not regarded as complete if it is not made up of exactly the same elements that were present at the time the child was first confronted with it. If the slightest ingredient is altered or removed the total situation is no longer the same and therefore is not accepted as such, or it is resented with impatience or even with a reaction of profound frustration. From Leo Kanner, Autistic disturbances of affective contact, Nervous Child, 2, 217–250, 1943.

In addition to emphasizing the importance of autism (living in your own world) he emphasized that the children exhibited “resistance to change.” By this, he meant that they literally had what he termed



  3

Early Mistakes About Autism

“insistence on sameness.” For example, a child might require that the parents take the same route to school or church and become very upset if there was any deviation from this routine. They might be very rigid about what kinds of clothes they would wear or foods they would eat. The term “resistance to change” as used by Kanner in 1943 also refers to some of the unusual behaviors frequently seen in dealing with changes in the environment or routine; for example, the apparently purposeless motor behaviors (stereotyped movements) such as body rocking, and hand flapping, often exhibited in autism. Kanner viewed these as purposeful and a way for the child to maintain sameness, a feeling of comfort with an unchanged environment. Dr. Kanner mentioned that when language developed at all it was unusual. For example, the child with autism might fail to give the proper tone to his or her speech (that is, might speak like a robot) or might echo language (echolalia) or confuse personal pronouns (pronoun reversal). For example, when asked if he or she wanted a cookie, the child might respond “Wanna cookie, wanna cookie, wanna cookie.” Sometimes the language that was echoed was from the distant past (delayed echolalia). Sometimes it happened at once (immediate echolalia). Sometimes part of it was echoed but part had been changed (mitigated echolalia). In his original report Kanner thought there were two things essential for a diagnosis of autism: (1) the autism or social isolation and (2) the unusual behaviors and insistence on sameness. As time went on, it became clear that language/communication problems were also important in the diagnosis (when you think about it, of course, language is an important aspect of social development!). Including these problems along with the early onset of the condition that Kanner mentioned we have what continue to be the four hallmarks of autism: (1) impaired social development of a type quite different from that in normal children, (2) impaired language and communication skills—again of a distinctive type, (3) resistance to change or insistence on sameness as reflected in inflexible adherence to routines, motor mannerisms and stereotypies, and other behavioral oddities, and (4) an onset in the first years of life. Of course, autism existed before Kanner described it. Likely children who were described as “wild” or “feral,” presumed to have been living in the wild or raised by animals, may well have been the first children with autism. They may have been abandoned or ran away from their parents (the problem of bolting that we’ll talk about when we discuss safety). In their excellent history of autism, Donvan and Zuker (2016) gave examples of individuals with autism in the 1800s, before autism was recognized as a condition as such. There are some other things to know about autism’s history that are very important.

Early Mistakes About Autism While Kanner’s description remains a “classic” it was not the last word on the subject. Some aspects of his original report inadvertently served to mislead people. Some of these mistaken first impressions took many years to clarify. For example, Kanner originally thought that children with autism probably had normal intelligence. He thought this because they did rather well on some parts of intelligence (IQ) tests. On other parts, however, they did quite poorly or refused to cooperate at all. People assumed that, if they did as well on all parts of the IQ test as they did on the one or two parts on which they seemed to do well, the child would not be intellectual disabled. Unfortunately, it turns out that cognitive or intellectual skills are often difficult to assess, in large part because they are very scattered. Put another way, children with autism often do some things well, such as solving puzzles, but they may have tremendous difficulty with more language-related tasks. It is frequent to find marked discrepancies in

4 

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abilities—something not common in the typically developing population but very frequent in autism. For example, we’ve seen children with Asperger’s who have verbal abilities in the genius range on IQ tests but whose nonverbal skills are in the borderline or intellectually disabled range. As time went on it became clear that, in the earliest days of autism work, many children with autism ended up functioning in the intellectually disabled range as based on their entire performance on tests—not just their areas of greater ability. This was a time before effective, evidence-based intervention was available. Many (a majority) of these children were mute and needed considerable care. It took many years to appreciate this but for these early cases the majority ended up functioning in the range of intellectual disability when you combine all of their, sometimes quite variable, different scores. Maybe 10% of the time a child with autism will have an unusual ability, for example, to draw, or play music, or memorize things, or sometimes calculate days of the week for events in the past or future (calendar calculation). These abilities are usually isolated (the otherwise very wonderful portrayal of the man with autism in Rain Man is misleading in this respect). These individuals, now usually referred to as autistic savants, sometimes lose their abilities as they get older. But it was just this kind of remarkable ability that led people to minimize the child’s areas of difficulties (see Box 1.2). BOX 1.2  EARLY MISTAKES

Early Mistaken Impressions of Autism

• ↑Increased rate in families with higher levels of educations Implication: Effects of experience causing autism Subsequent research: there is no increase in autism among parents with more education • No associated medical conditions (children had an attractive appearance) Implication: Exclusion of “organic” cases as having autism Subsequent research: High rates of seizures, higher than expected rates of some disorders—especially some genetic disorders • Impression of normal levels of intelligence (children did well on some parts of IQ tests) Implication: Bad performance due to lack of motivation of child Subsequent research: Significant scatter in abilities is often present; marked discrepancies between skills areas (e.g., verbal and nonverbal IQ) are common • Autism associated with schizophrenia Impression: Confusion with schizophrenia given the use of the word autism (earlier used to describe self-centered thinking in schizophrenia) Implication: Autism might be the earliest manifestation of schizophrenia Subsequent research: Autism and schizophrenia are not related; occasional (no more than expected by chance) children with who autism develop schizophrenia

Another source of confusion came because Dr. Kanner originally suggested that autism was not associated with other medical conditions. We now know this is not true. Over the years, many hundreds of conditions have been reported to be related to autism, but it now seems that really only a few are especially frequent. For example, we now know that sometimes autism is seen with some genetic conditions like Fragile X Syndrome or Tuberous Sclerosis—and with advances in genetics that we’ll talk about in a later chapter, we increasingly find genes/genetic abnormalities in children with



  5

Early Mistakes About Autism

autism and have come to appreciate how strong the genetics of autism can be. As children with autism were followed over time, it became apparent that many of them would develop seizures (epilepsy), as we discuss later in the book. Dr. Kanner originally guessed that autism was a very distinctive condition and we now know that this is true. At the same time, he used the word autism—a word which previously had been used to describe some of the unusual, self-centered, and self-contained thinking seen in a major mental disorder called schizophrenia. Thus, his use of the word autism suggested to many that perhaps autism was the earliest form of schizophrenia. It took many years for this to be clarified.We now know that autism and schizophrenia are not related. Very occasionally, but no more than would be expected by chance, individuals with autism may, as adolescents or adults, develop schizophrenia. Autism differs from schizophrenia, however, in many different ways, including its clinical features, course, associated difficulties, and family history. Finally, Kanner mentioned in his 1943 paper that in 10 of the 11 families, the parent or parents were highly educated and successful. It also appeared that parents and children interacted somewhat unusually at times. This led to the idea, particularly in the 1950s, that highly successful parents somehow ignored or otherwise ill-treated their child to cause autism and that, as a result, autistic children might be well served by isolating them from their families. Over time it became very clear that this is not true. Instead, it is clear that Kanner’s original sample was a highly selected one; that is, individuals who were very educated and successful in the 1940s would be just the kinds of people who could find the one person in the country who was doing research on the kinds of problems their children had. It also became clear that unusual aspects of parent–child interaction were just as likely to come from the child, rather than the parent. In contrast to the 1950s, when often the emphasis was on putting the child in an institution, we now believe that children with autism are best served by remaining in their families and communities and schools. Finally, Dr. Kanner thought children were born with autism—i.e., that it was congenital. He did, in fact, mention a case where there had appeared to be some period of normal development and we know now that in maybe 1 in 5 cases, parents tell us that their child seemed to develop normally before autism developed. We know that most of the time there seem to be very clear warning signs of autism in the first year or so of life—the lack of a specific diagnostic marker or test complicates this issue, of course. We also know that, very rarely, a child can develop normally to 3 or 4 years of age and then develop autism. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders fourth edition (DSM-IV) had a specific term for this rare phenomenon (childhood disintegrative disorder). At any rate, it is clear that most children with autism appear to either have it at birth or present symptoms very early in life—with some important exceptions. Box 1.3 provides a short case history of a child with autism. BOX 1.3  CASE REPORT: AUTISM SPECTRUM DISORDER

John was the second of two children born to middle-class parents after normal pregnancy, labor, and delivery. As an infant, John appeared undemanding and relatively placid; motor development proceeded appropriately, but language development was delayed. Although his parents indicated that they were first concerned about his development when he was 18 months

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of age and still not speaking, in retrospect they noted that, in comparison to their previous child, he had seemed relatively uninterested in social interaction and the social games of infancy. Stranger anxiety had never really developed, and John did not exhibit differential attachment behaviors toward his parents. The pediatrician initially reassured John’s parents that he was a “late talker,” but they continued to be concerned. Although John seemed to respond to some unusual sounds, the pediatrician obtained a hearing test when John was 24 months old. Levels of hearing appeared adequate for development of speech, and John was referred for developmental evaluation. At 24 months, motor skills were age appropriate and John exhibited some nonverbal problem-solving skills close to age level. His language and social development, however, were severely delayed, and he was noted to be resistant to changes in routine and unusually sensitive to aspects of the inanimate environment. His play skills were quite limited and he used play materials in unusual and idiosyncratic ways. His older sister had a history of some learning difficulties, but the family history was otherwise negative. A comprehensive medical evaluation revealed a normal electroencephalogram (or EEG) and CT scan; genetic screening and chromosome analysis were normal as well. John was enrolled in a special education program, where he gradually began to speak. His speech was characterized by echolalia, extreme literalness, a monotonic voice quality, and pronoun reversal. He rarely used language in interaction and remained quite isolated. By school age, John had developed some evidence of differential attachments to family members; he also had developed a number of self-stimulatory behaviors and engaged in occasional periods of head banging. Extreme sensitivity to change continued. Intelligence testing revealed marked scatter, with a full-scale IQ in the intellectually deficient range. As an adolescent, John’s behavioral functioning deteriorated, and he developed a seizure disorder. Now an adult, he lives in a group home and attends a sheltered workshop. He has a rather passive interactional style but exhibits occasional outbursts of aggression and self-abuse. Comment: With earlier intervention more children with autism are doing better. Unfortunately, in this case although the child developed speech, his overall outcome has not been as good as might have been hoped. Adapted from F. Volkmar, Lord, C., Klin, A., and E. Cook. (2002). Autism and pervasive developmental disorders. In M. Lewis (Ed.), Child and adolescent psychiatry: A comprehensive textbook (p. 595). Lippincott.

Asperger’s

and the

Broader Spectrum

of

Autism

The year after Kanner reported on autism, Hans Asperger, a medical student in Vienna, Austria, reported on a group of boys who had trouble joining social groups. In contrast to Kanner’s report, these children were very verbal and focused and talked about their special interests (rocks, American gangsters, train schedules, etc.) incessantly. Asperger made the important point that these intense special interests interfered with the child’s learning. He also noted that these interests tended to take over the family, for example, they’d have to go to the train station every day to be sure the 6:15 p.m. train was on time. He said these boys were motorically clumsy and noted similar problems in some families. Problems in social interaction, particularly with peers, were very significant and he termed the condition autistic personality disorder, using the same word—autism—that Kanner had used. Effectively, this report set the stage for



  7

Asperger’s and the Broader Spectrum of Autism

continuing debate. Asperger’s was officially recognized as a diagnostic term from 1994 (in the DSM-IV) until DSM-5 when it was dropped (although individuals with well-established diagnoses of Asperger’s could keep the diagnosis!). We’ll talk more about Asperger’s shortly but essentially the realization that some individuals have major problems in social interaction, sometimes with special interests that don’t fit so neatly with Kanner’s first description, raises the question of broad vs. narrow views of autism. Despite the welcome name change in DSM-5 to autism spectrum disorder, in fact, the definition provided (as we’ll discuss) is really a narrower view, like that of Kanner. But what about the cases that don’t fit this narrow view? It has been clear for decades that many children (and then adolescents and adults) have problems in social interaction but don’t have more classic autism. There has been increasing interest in the broader range of autism (often technically called the broader autism phenotype). In many ways this broader view is more consistent with the growing body of work on the complex genetics of autism. This has been a major focus of discussion in light of the awareness of the complex genetics of autism. Box 1.4 provides a short case history of a child with Asperger’s. BOX 1.4  CASE OF ASPERGER’S

Case Report: Asperger’s Disorder Tom was an only child. Birth, medical, and family histories were unremarkable. His motor development was somewhat delayed, but communicative milestones were within normal limits. His parents became concerned about him at age 4 when he was enrolled in a nursery school and was noted to have marked difficulties in peer interaction that were so pronounced he could not continue in the program. In grade school, he was enrolled in special education classes and was noted to have some learning problems. His greatest difficulties arose in peer interaction; he was viewed as markedly eccentric and had no friends. His preferred activity, watching the weather channel on television, was pursued with great interest and intensity. On examination at age 13, he had markedly circumscribed interests and exhibited pedantic and odd patterns of communication with a monotonic voice quality. Psychological testing revealed an IQ within the normal range with marked scatter evident, with verbal abilities much higher than nonverbal ones. Formal communication examination revealed age-appropriate skills in receptive and expressive language, but marked impairment in pragmatic language skills. Tom has now gone on to college where he has, with considerable support, done well. He is currently employed as a computer programmer.

Comment: Preservation of language (if not always communication) skills in Asperger’s presents some important strengths for treatment.There is a related issue of neurodiversity. The neurodiversity movement would tend to see all these things less as a disorder but rather a different way of viewing and interacting with people. This is a complex issue in and of itself but it is important to realize that some individuals, particularly those who function at the highest levels, would rather see themselves as different rather than disordered.The book NeuroTribes by Silberman addresses these complex issues and raises other issues.

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Why Did It Take So Long “Condition”?

to

Recognize Autism

as an

Official

Autism was first described in 1943. Why did it take so long (1980) before autism was officially considered a diagnosis in the U.S.? In the first place, the early editions of the DSM guidebook to psychiatric diagnoses were not very helpful—they were theory driven rather than focused on the clinical phenomena. Only the term childhood schizophrenia was available to describe children with severe disabilities (other than intellectual disability) and, as we mentioned before, there was some early confusion around the word autism that had been used much earlier to described self-centered thinking (not social problems) in adult schizophrenia. During the 1970s, several important lines of evidence made it clear that autism needed to be recognized in its own right: 1. Autism was clearly a brain-based disorder—with a high risk for developing seizures. 2. Children with autism was strongly genetic with a much greater risk for autism in identical, as opposed to fraternal, twins. 3. Autism responded best to structured teaching. 4. Children with autism did not exhibit features of schizophrenia. Rather, they exhibited a distinctive pattern of behavior and development from very early in life; in point of fact schizophrenia in children (before adolescence) is very rare. All these lines of evidence supported the inclusion of autism within the new and totally revamped guidebook DSM-III in 1980.

Names

for

Autism

and

Related Conditions

Autism was first recognized as “infantile autism” in the DSM-III; a new term “residual infantile autism” was available for persons who had once met the strict list of diagnostic features or criteria for infantile autism but no longer did so. Over time there have been various changes in the way autism is termed and defined.The current term “autism spectrum disorder” was recently officially recognized by the American Psychiatric Association in 2013 in the 5th revision of its guide to diagnosis, the DSM-5. This term replaced the older term “pervasive developmental disorder” (PDD) that had been used from 1980 to 2013 to refer to the entire group of conditions, including autism.This was a term for the class of disorder to which autism belongs—autism is a kind of PDD like apples are a kind of fruit.The DSM5 also dropped a number of other terms that had been included with autism, including Asperger’s Disorder and pervasive development disorder not otherwise specified (PDD-NOS or atypical autism). The PDD-NOS term had been used for several decades in one way or another to describe children who needed services but didn’t quite fit the autism label. The decision to drop both categories has been rather controversial. As we’ll discuss in more detail in Chapter 3, the current DSM-5 definition is more stringent than the previous one and because having a label is so closely tied (in the U.S.) with services, this can be problematic. DSM-5 did include a new category for a social communication disorder (SCD) but this category is not simply the same as either the older Asperger’s concept or PDD-NOS. We will talk more about some of the issues of diagnosis in the next chapter.



  9

Names for Autism and Related Conditions

This gets us to the question of what an official diagnosis is. In the United States the DSM—the Diagnostic and Statistical Manual of the American Psychiatric Association—is the one most frequently used, and it is now in its 5th edition (DSM-5). This book in used for both clinical and research purposes. In contrast, there is an international system (also used in the U.S. and around the world) called the International Classification of Diseases, 11th edition (ICD-11). These systems are similar in some ways and different in others. Probably the major difference is that the ICD has two different guidelines, one for research and the other for clinical work; it also makes some differences and distinctions on subtypes based on presence/absence of functional communication and/or intellectual disability. Other diagnostic systems exist as well but these two are the major ones. These books give guidelines to physi­ cians and other health care providers about diagnoses. We will talk more about the uses and limitations of these diagnostic systems in the next chapter. A big complexity for autism is that, at least at present, there is no simple blood or laboratory test that can establish whether a child does or doesn’t have autism. A search for such markers (the technical term is biomarkers) is underway and these may be helpful in simplifying the diagnosis in the future. One of these is the use of the EEG or brain wave response to viewing human faces. As we discuss later on in this chapter, much work has now been done on understanding the social brain in autism and this may be of value in developing new diagnostic approaches.We know now of a number of genetic risk factors for autism, and genetic testing has taken on an important role in medical assessments with some genetic differences/conditions identified between maybe 10% and 20% of the time (although sometimes the importance of any small genetic difference remains unclear!). At present, doctors (both clinicians and researchers) have to focus more on the history and symptoms presented by the child. In Chapter 2, we’ll talk about some screening tools that have been designed to help parents, teachers, and health-care providers look for early warning signs of autism. The various terms used for autism are listed in Box 1.5 BOX 1.5  TERMS USED FOR AUTISM AND RELATED DISORDERS

Current Name

Other Names for Essentially the Same Thing

Autism spectrum disorder  Autistic disorder, childhood autism, infantile autism, early infantile autism, residual infantile autism. Asperger’s disorder  Asperger’s disorder (no longer an official term in DSM-5 but grandfathered in from DSM-IV for people with “well-established” diagnoses), Asperger’s syndrome, autistic psychop­ athy, autistic personality disorder. Childhood disintegrative disorder  Heller’s syndrome, disintegrative disorder, disintegrative ­psychosis. No longer recognized in DSM-5. Broader autism phenotype (BAP)  Atypical autism, pervasive developmental disorder not otherwise specified, atypical PDD, atypical personality. No longer specifically recognized in DSM-5 but “grandfathered” in for well-established cases.

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Social communication disorder

Services

for

Children

A new disorder (in the communication section of DSM-5). This may overlap somewhat with the broader autism phenotype although this is a communication disorder rather than an autism spectrum disorder in the DSM-5.

with

Autism

Until the passage of the Education for All Handicapped Children Act in 1975 (and its various successors) parents of children with autism often were at a loss as to how to educate them. Research began to suggest that structured educational programs were more effective than unstructured ones; that is, programs in which the adult had an agenda for teaching the child were better than if the child were left to his or her own devices to learn on their own. Before 1975, parents were often told by schools that there was no way their child could be educated. Often, parents were advised to place their child in a residential or large state institution where the child got little in the way of intervention. Now schools in the U.S. are mandated to provide a free and appropriate education for all individuals with disabilities. This is a radically different approach. As programs have become more sophisticated, schools have done an increasingly better job of providing education for children with autism. This means that schools are often now the major focus of intervention for children with autism. As a result, it appears that more children are being identified in schools and receiving services and, importantly, it also seems like, as a group, children with autism are doing better. In subsequent chapters, we’ll be discussing these issues and specific programs in greater detail.

How Common Are Autism

and

Related Conditions?

The first studies of the frequency or epidemiology of autism were conducted in the 1960s. Since that time many studies have been conducted. The most recent comprehensive review of the topic by Myers and colleagues (in 2019) suggests a rate of 1 in 145 children (and also notes the many problems in summarizing the available studies). Studies have been conducted in many countries and there are some important issues in diagnosis, including culture, ethnicity, and gender. Is the Rate of Autism Increasing? There is some concern that the rate of autism may be increasing as more recent studies tend to report higher rates. However, we really don’t know if this is true for several reasons. First, it is clear that awareness of autism has increased dramatically, so cases are more likely to be noticed. When one of us (FV) moved to New Haven in 1980 to work on autism at the Yale Child Study Center with Donald Cohen, people would ask what my research was about and when I said, “Autism,” they would frequently say something like, “Isn’t that wonderful—we need more artistic children”; people didn’t even know what the word meant! Today, there are ads from the Ad Council about autism on radio and television and posted in the background of TV shows advertising autism-related groups. Another possible reason for an apparent (but not real) increase is changes in the diagnostic guidelines for autism—the current systems (both DSM and



  11

Seizure Disorders and EEG Abnormalities

ICD) were designed to do a better job of detecting autism in more able children. Another problem has been the tendency to equate autism (strictly defined) with the much broader and much less well-defined autism “spectrum.” Finally, there is an unusual problem with autism, since the label often gets children more services than other labels; i.e., parents may push to get an autism label for educational purposes even if the child might be said to have something else (this is a problem called diagnostic substitution and one of the reasons we have to be skeptical about state-reported data based on school services). This is a real problem because states, and sometimes regions within states, vary widely (and wildly) in terms of how they provide services—in some states only the label of autism really gets needed services. This can also be a problem, as many higher cognitively able children are now being diagnosed, and many parents want a label of autism/PDD to get their child intensive educational services. Sex Differences It is clear that autism appears to be at least 3 to 5 times more frequent in boys. On the other hand, when girls have autism, they are more likely to have intellectual disabilities.We do not yet understand the basis for these differences. One theory is that, perhaps on a genetic basis, girls are generally somewhat less vulnerable to autism (hence the greater frequency in boys) and that for girls to have autism they must have greater genetic or central nervous system damage (hence the higher rate of intellectual disability in girls). This gender discrepancy is also noted in Asperger’s, but there does not appear to be a marked sex difference in the broader autism spectrum (what used to be termed PDD-NOS). A current focus of much research is whether girls may exhibit a milder version of autism and be part of the “broader autism phenotype.”

What Causes Autism? As we mentioned earlier, Kanner’s first paper on autism was very influential—in both good and bad ways. The good ways had to do with the unusually clear way he described what he saw in autism (problems in social interaction and unusual responses to the environment). He was also clear in suggesting that autism was congenital—that is, children were born with it. On the other hand, the bad thing about his description is that it included some of his speculations that proved incorrect as we discussed at the beginning of this chapter. Beginning in the 1960s, and particularly in the 1970s, research began to show that autism was a brain-based disorder with a strong genetic basis.

Seizure Disorders

and

EEG Abnormalities

One of the important things that happened to help doctors realize parents weren’t to blame for autism was an increasing awareness of the higher than expected risk children had for developing seizures. Seizures disorders (also referred to as epilepsy or as convulsions) are a group of conditions all of which result from abnormal electrical activity in the brain. The symptoms of seizure disorder are quite varied. They can range from brief episodes when the child seems to “tune out” to much more obvious convulsions when the child falls to the ground, loses consciousness, and has alternating periods of muscle contraction and relaxation. There are many different kinds of epilepsy as we discuss later.

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One of the ways doctors look for seizure activity is through the EEG, which measures electrical activity in the brain. Both early and more recent studies suggest that as many of 50% of individuals with autism have abnormalities in their EEG; findings on the EEG are diverse and not specific to autism but the higher rates of abnormality are, of course, suggestive of some basic problem with how the brain is “wired.” Even more dramatic are the rates of seizure disorder in autism. In the “normal” population of children, rates of first seizure are highest around the time of birth and then greatly decrease over time. Figure 1.1 presents information on times when epilepsy (recurrent seizures) develop. These data are from two studies of children with autism and PDD-NOS as well as data from a large sample of normally developing British children. There are higher rates for first seizures in children with autism than in the normal population of children without autism.

FIG UR E 1.1   Ra te s o f f irs t s e izu re an d ep ilep sy in t w o samp les o f in d ivid uals w it h autism

(Vo l k m a r & Ne l s o n, 1 990 ; D ey kin & Mac Mah o n , 1 979) an d a Br it is h samp le of ty p ical ly d eve lo p ing c h ild ren (Co o p er, 1 965).



  13

Neuroanatomy and Brain Imaging Studies

Other Neurological Features A number of other neurological problems are observed in autism. Again, these are of many different types; not every child has every sign and some children will have none. Some children with autism have delays in the development of such things as hand dominance (they may draw with either hand without having a preference for right or left). They can also have general decreases in muscle tone in the body and be somewhat “floppy” as babies (technically, this is called “hypotonia”). Sometimes individuals with autism have unusual reflexes; often these are reflexes that are usually seen only in very young babies but can persist into adulthood in individuals with autism. For example, with a newborn, if the doctor brings his reflex hammer toward the baby’s mouth, the baby may start to suck, as if anticipating the bottle or breast; this visual rooting reflex is sometimes seen even in adults with autism, whereas in most of us it disappears very early in childhood. Other problems may be seen in the way that individuals with autism walk, or with their posture.

Neurochemistry Nerve cells use different kinds of chemicals to communicate with each other. A number of these systems have been studied in autism and there is some suggestion of alterations in these systems in autism. Probably the most work has centered on the chemical serotonin (also sometimes referred to as 5-HT or 5-Hydroxytryptamine). A number of studies have shown that levels of serotonin in the blood (not necessarily in the brain) are often increased in individuals with autism. Unfortunately, the relationship between blood levels and brain levels of this chemical is not always clear. Other studies have focused on the chemical dopamine, which is involved in parts of the brain that control movement, and is part of a broader system that relates to levels of arousal. Many of the drugs used to treat symptoms of autism effect these chemicals (see Chapter 11).

Neuroanatomy

and

Brain Imaging Studies

Various methods can be used to study the brain.These range from actual studies of brain tissues obtained at the time of death (postmortem studies) to studies of the living and active brain through functional magnetic resonance imaging (fMRI). A number of findings deserve mention. Both autopsy and brain imaging studies have suggested that at least some individuals with autism have increased brain size. Several studies have suggested the possibility that there are some alterations in brain structure— particularly in those parts of the brain that process more emotional or social thinking, perception, and responding. In the last several years a number of interesting findings have emerged from studies of functional neuroimaging in autism. A paper from our (Yale) group documented that children with autism and Asperger’s syndrome seemed to process the information in faces differently in the brain— basically, they don’t “see” faces in the special part of the brain that the rest of us use. Another, possibly related, finding is that higher functioning individuals with autism tend to look at mouths—rather than eyes and the upper parts of the face—when watching very intense social interactions. Similarly, other work,

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FIG UR E 1.2   V is u al fo cu s o f a m an w it h aut is m (b o t to m lin e) as co mpared to a ty p ically

d eve lo p ing v ie w e r ob s er vin g a s h o r t c lip fro m t h e movie c lass “ W h o’s Af raid o f V irg inia Wo o l f ”. T h e ty p ically d evelo p in g p ers o n go es bac k an d fo r t h be tw e e n t he eye s in v ie w in g a s o c ial s cen e; t h e h igh -fun c t io n in g p ers o n w i th a u t ism go e s ba c k a n d fo r t h b et w een t h e mo ut h s o f t h e s p eakers miss in g m u c h o f t he s o c ial– emo t io n al mean in g in t h e s cen e. Reprinted with permission from Volkmar, F. R. (2011). Understanding the social brain in autism. Developmental Psychobiology, 53(5), 428–434. © John Wiley & Sons, Inc.

now being pursued as a potential biomarker for autism, notes that viewers with autism have, on EEG recordings, different times and patterns of looking at faces. This tells us that individuals with autism use different brain mechanisms and systems to process social information. See Figures 1.2 and 1.3.

Genetics As scientists began to look into the issue of the genetics of autism it became apparent that rates of autism were increased in the brothers and sisters of children with autism. Rates reported vary between



  15

Genetics

Percent Viewing Time 70

% Viewing Time

60 50 40 30 20 10 0 Mouth

Eyes Autism

Body

Objects

Controls

FIG UR E 1.3   Da ta a d a p te d , wit h per miss io n , fro m A . Klin , W. Jo n es , R. Sc h ult z, F. Vo lkmar,

& D. Co he n. (2 0 02 ). Archives of General Psychiatry , 59(9), 8 09–81 6. Perce nt v ie w ing t im e s p e nt fo cus ed o n mo ut h regio n , eye regio n , an d b o d y region for v ie w e rs wit h a nd wit h o ut aut is m. All d ifferen ces are s ign ifican t . Vis ual f ixa t io n pa t te r ns d u rin g view in g n at uralis t ic s o c ial s it uat io n s as p red ic to rs of s o c ial co m p e te nce in in d ivid uals w it h aut is m.

1 in 10 and 1 in 50. This does not seem like a very high rate unless one realizes that the rate of autism is around 1 in 150 or so; although autism is by no means common in siblings of autistic children, the rate is clearly increased relative to the general population. It is clear that the role of genetics in autism is very strong and, that said, there is also some role for environmental factors (perhaps interacting with genetic factors) as well. Autism is associated with some genetic conditions and genetic factors may be the most significant cause for the autism spectrum. As research has increased in its sophistication and we have been able to use very large samples of individuals with ASD, we’ve become aware of a range of genetic risk factors. These can include new mutations (called de novo mutations) in the individual. This could include mutations passed from older fathers (since sperm are produced through a man’s life, they are more prone to contain mutations as men age) to their children. The growing sophistication of genetic work also made us aware of the potential contribution of copy number variations (CNVs)—losses or duplications of parts of the DNA. Other mutations may deactivate, or partially deactivate, genes in their functioning. Many of the genes identified may relate to certain aspects of autism or aspects of brain function, for example, nerve to nerve connections. The thought that many different genes or genetic mechanisms are involved is also supported by the observation that even when brothers or sisters do not have autism, they may be at increased risk for language and learning difficulties. Still other factors, called epigenetic factors, might also be involved in autism. Epigenetic changes might be based on exposure to drugs, toxins, or other environmental factors, as we discuss shortly. Certain drugs are well known to have negative effects on the growth and development of the developing fetus. Congenital rubella was, at one time, thought to be linked with autism. But this congenital infection is so devastating it can be difficult to sort out the autism from the general and widespread array of problems. Certain parts of the human chromosome have seemed particularly sensitive to such

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effects. In sum, there is clearly some potential role for environmental factors in autism but so far the work on genetic risk factors is much more advanced. Although research has increasingly highlighted the importance of genetic factors in autism, final answers are not yet in. The genetics of autism is complex and it seems like multiple genes are probably involved; it is estimated that hundreds, perhaps up to a thousand, genes may be involved. To make life even more complicated, it may also be the case that not all forms of autism have the same (or any) genetic basis but might occur for other reasons; for example, there might be a specific problem at the moment of conception when some genetic material might be lost or a genetic change (mutation) might occur. There is also a suggestion that experience broadly defined (e.g., in the form of early birth difficulties) might interact with genetic predisposition to cause autism. Major efforts are now underway to identify potential genes in autism.

Environmental Risk Factors Although the first twin studies found a very strong genetic component, there was also some potential role for environmental factors (broadly defined) in causing autism—perhaps in association with specific genes. As noted above, these could include a range of things during the pregnancy—exposure to drugs, toxins, and other risks of pregnancy. Much interest has centered on the issue of whether autism could be caused by problems during pregnancy, labor, and delivery. A number of studies have looked at this question. Generally, they have employed some rating scale that looks at the degree of risk during the pregnancy and/or during labor and delivery. Early studies seemed to show that there was an increased risk based on the use of these rating scales. Factors that seemed to be associated with increased risk for autism included older age of the parent, prematurity, and some other problems during labor and delivery. Of course, it would be just as reasonable to assume that if there was something wrong with the child from the moment of conception, there might be problems at birth.Thus, it would be just as reasonable to assume that problems in the child cause difficulties in the pregnancy. The growing body of work on genetic factors in autism, which is discussed shortly, would be most consistent with this idea. Although a handful of studies suggest some potential increased risks, the largest studies of studies (that is, what are termed meta-analytic studies) haven’t consistently produced a positive result. And, of course, it is clear that horrendous difficulties during labor and delivery, particularly when associated with severe fetal distress, won’t help any child—and have the potential to cause further trouble for a child who was going to have autism.

Psychological Models

of

Autism

The very earliest attempts to develop psychological models of autism were based on the misguided idea that experience and parental care caused autism. In the 1970s, it became clear this was fundamentally mistaken but over the subsequent decades various attempts have been made to develop psychological models or theories of how autism works in the psychological sense, i.e., of how individuals learn, remember, and respond. Their attempts are important because they help guide theory and research studies which, we hope, can advance treatment approaches and methods. Parents may hear about some of these referred to in passing, so it is good to know a little bit about them.



  17

Understanding the Causes of Conditions Related to Autism

These approaches all have their pros and cons and none has, at least as yet, emerged as the “winner.” At present, they all have something to offer in terms of alternative models of how we might understand autism. The theory of mind approach has emphasized the idea that there is a basic problem for children with autism in empathizing with others, that is, having a “theory of mind,” or theory of what motivations, intentions, and so on, impact on the behavior of others. This approach, first proposed by Simon Baron-Cohen (see reading list) has been remarkably productive in terms of research. The simplicity and elegance of this theory have added to its attractiveness. There are, however, two problems with this model. One is that the severe difficulties in social interaction impact behaviors seen in very, very young children—children of a few weeks of age. This is a time well before the ability to “put yourself into the other’s place” has really developed. Another problem is that many higher functioning individuals on the autism spectrum can do “theory of mind” tasks just fine, and yet these individuals are still very socially disabled. Another approach, termed the executive dysfunction hypothesis (ED), emphasizes deficits in “executive functions” (a topic we discuss in greater detail in Chapter 6). The notion of executive functions refers, basically, to the whole range of abilities involved in planning and organization. For example, seeing the multiple steps involved in a complicated task, plotting a solution in terms of getting to the desired result, keeping the desired result in mind, and being able to work out alternatives when this is needed. Within this view, autism is related to difficulties in dealing with change and a tendency to engage in repetitive behavior and perseveration as well as to problems in developing planning and problem-solving abilities due to a lack of coordinated reasoning and ongoing adjustment to feedback. As we discuss later in this book, there is no question that children with autism spectrum disorders often have severe problems in this area. From the point of view of a more general theory, however, there are some difficulties. Probably most importantly, difficulties in this area are not unique and specific to autism; that is, children with attention deficit hyperactivity disorder also have problems with organization (but don’t have social troubles of the same type seen in autism). A somewhat different theory proposes that the difficulties in autism relate to “weak central coherence.” The idea here is that people with autism have trouble getting the “big picture” issue (Happé et al., 2001); they don’t see the interconnections of things—a “not seeing the forest for the trees” problem. This theory would account for some of the people with autism who are gifted in one area but very deficient in another area. Although very attractive in many ways, the experimental evidence has been somewhat weak and contradictory. Other approaches, for example, Klin and colleagues (2003) focus more on the social difficulties being a primary cause of autism, with many of the symptoms arising from the limited interest in people and the negative consequences on brain and psychological development.

Understanding

the

Causes

of

Conditions Related

to

Autism

Our understanding of the causes of conditions maybe related to autism is not as advanced as in autism— with the major exception of Rett’s disorder. Again, we understand that all these conditions have a basis in problems in the brain.This is suggested by such things as rates of seizure disorder and, occasion­ ally, other abnormalities as well.The role of genetic factors in Rett’s syndrome is now clearly established, as a gene has been found to be involved. It is interesting that in the original description of Asperger’s

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disorder, Asperger himself noted that the father often had similar problems in social interactions. This has been supported by some research but, to date, studies of the genetics of Asperger’s have been limited.

Summary This chapter has given some background information on autism and related conditions. All these conditions share impairment in social interaction as a major feature. Autism/autism spectrum disorder are the terms that people know best. As a result of changes in terminology over the years other terms like Asperger’s, pervasive developmental disorder-NOS, and the broader autism phenotype have emerged as well. These share important similarities to autism but differ from each other in various ways. We know that as we have developed better treatments and early diagnosis, it does appear that outcome is improving.We also know that autism is frequently associated with evidence of brain impairment, such as seizure disorders, and parents (and doctors) should be alert to the possibility of a child developing seizures. We know much more about how the social brain works both in typically developing children and those with ASD. Differences in social information processing likely are a major component of the problems in development and learning we see in autism—essentially these present areas we must “work around” in helping the child learn from people. We have also now come to appreciate that genetic factors are very much involved in autism. In some ways this has turned out to be a surprise, since early work did not seem to suggest a strong genetic basis. But this early work did not take into account the frequency of autism and only when the first studies of twins were done was the possible genetic basis of autism recognized. Studies of twins showed that if the twins were identical (with exactly the same genetic make-up) and if one had autism, there was a very high chance the other twin would as well; if the twins were “fraternal” (not exactly the same genetic make-up but sharing as many genes as any siblings would) the rate was much lower. As time went on, it also became clear that a range of other problems—in language and learning and social interaction—might be inherited. Active research around the world is being conducted to look for the genes that cause autism. R EFER E N C E S A N D S U G G E S TED RE ADI NG

Altevogt, B. M., Hanson, S. L., & Leshner, A. I. (2008). Autism and the environment: Challenges and opportunities for research. Pediatrics, 121, 1225–3000. American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text revision). American Psychiatric Press. American Psychiatric Association. (2013). Diagnostic and statistical manual (DSM-5) (5th ed.). American Psychiatric Press. Anderson, G. M., & Hoshino, Y. (2005). Neurochemical studies of autism. In F. R. Volkmar, A. Klin, R. Paul, & D. J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 1, pp. 453–472). Wiley. Asperger, H. (1944). Die “autistichen psychopathen” im Kindersalter. In U. Frith (Ed.), Archive fur psychiatrie und Nervenkrankheiten (pp.117, 76–136). Reprinted (in part) in (1991). Autism and Asperger syndrome. Cambridge University Press, 1991. Attwood, T. (2006). The complete guide to Asperger’s syndrome. Jessica Kingsley.



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REFERENCES AND SUGGESTED READING

Baron-Cohen, S. (1995). Mindblindness. MIT Press. Baron-Cohen, S. (2003). The essential difference: The truth about the male and female brain. Basic Books. Baron-Cohen, S. (2004). The essential difference: Male and female brains and the truth about autism. Basic Books. Baron-Cohen, S., Tager-Flusberg, H., & Cohen, D. (Eds.). (2000). Understanding other minds: Perspectives from developmental neuroscience (2nd ed., pp. 357–388). Oxford University Press. Bashe, P. R., & Kirby, B. L. (2001). The OASIS guide to Asperger syndrome. Crown. Cohen, D. J., & Volkmar, F. R. (1997). Handbook of autism and pervasive developmental disorders (2nd ed.). Wiley. Donvan, J., & Zuker, C. (2016). In a different key: The story of Autism. Penguin/Random House. Exkorn, K. (2005). The autism sourcebook: Everything you need to know about diagnosis, treatment, coping, and healing. Regan Books. Folstein, S. E., & Rutter, M. (1977). Genetic influences in infantile autism. Nature, 265, 726–728. Fombonne, E. (2005). Epidemiological studies of pervasive developmental disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 42–69). Wiley. Frith, U., & Hill, E. (Eds.). (2004). Autism: Mind and brain. Oxford University Press. Grinker, R. R. (2007). Unstrange minds: Remapping the world of autism. Basic Books. Happé, F. (2005). The weak central coherence account of autism. In F. R. Volkmar, A. Klin, R. Paul, & D. J. Cohen (Eds), Handbook of autism and pervasive developmental disorders (Vol. 1, pp. 640–649). Wiley. Happé, F., Briskman, J., & Frith, U. (2001). Exploring the cognitive phenotype of autism: Weak “central coherence” in parents and siblings of children with autism: I. experimental tests. Journal of Child Psychology and Psychiatry, 42(3), 299–307. Hermelin, B. (2001). Bright splinters of the mind: A personal story of research with autistic savants. Jessica Kingsley. Howlin, P. (1998). Children with autism and Asperger syndrome: A guide for practitioners and carers. Wiley. Huerta, M., Bishop, S. L., Duncan, A., Hus, V., & Lord, C. (2012). Application of DSM-5 criteria for autism spectrum disorder to three samples of children with DSM-IV diagnoses of pervasive developmental disorders. American Journal of Psychiatry, 169(10), 1056–1064. Ingersoll, B., & Wainer, A. (2014). The broader Autism phenotype. In F. R. Volkmar, R. R. Paul, S. J. Rogers, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed.). Wiley. Jackson, S. L. J., & F. R. Volkmar (2019). Diagnosis and definition of autism and other pervasive developmental disorders. In F. R. Volkmar (Ed.), Autism and pervasive developmental disorders (pp.1–24). Cambridge University Press. Kanner, L. (1943). Autistic disturbances of affective contact. Nervous Child, 2, 217–250. Klin, A., Jones, W., Schultz, R., & Volkmar, F. (2003). The enactive mind—from actions to cognition: Lessons from autism. Philosophical Transactions of the Royal Society, Biological Sciences, 358, 345–360. Klin, A., Jones, W., Schultz, R., Volkmar, F., & Cohen, D. J. (2002). Defining and quantifying the social phenotype in autism. American Journal of Psychiatry, 159(6), 895–908. Klin, A., McPartland, J., & Volkmar, F. R. (2005). Asperger syndrome. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 88–125). Wiley. Klin, A., Sparrow, S. S., & Volkmar, F. R. (Eds.). (2000). Asperger syndrome. Guilford Press. Mesibov, G. B., Adams, L. W., & Klinger, L. G. (1997). Autism: Understanding the disorder. Kluwer Academic/Plenum Publishers. Mesibov, G. B., Shea, V., & Adams, L. W. (2001). Understanding Asperger syndrome and high functioning autism. Kluwer Academic/Plenum Publishers. Minshew, N. J., Sweeney, J. A., Bauman, M. L., & Webb, S. J. (2005). Neurologic aspects of autism. In F. R. Volkmar, A. Klin, R. Paul, & D. J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 1, pp. 453–472). Wiley. Myers, S. M., Voigt, R. G., Colligan, R. C., Weaver, A. L., Storlie, C. B., Stoeckel, R. E., Port, J. D., & Katusic, S. K. (2019). Autism spectrum disorder: Incidence and time trends over two decades in a population-based birth cohort. Journal of autism and developmental disorders, 49(4), 1455–1474. https://doi.org/10.1007/s10803-018-3834-0 Neisworth, J. T., & Wolfe, P. S. (2005). The autism encyclopedia. Brookes. Odom, S. L., Morin, K., Savage, M., & Tomaszewski, B. (2019). Behavioral and educational interventions. In F. Volkmar (Ed.), Autism and pervasive developmental disorders (pp. 176–190). Cambridge University Press.

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Ozonoff, S., Rogers, S. J., & Hendren, R. O. (2003). Autism spectrum disorders: A research review for practitioners. American Psychiatric Press. Ozonoff, S., South, M., & Provencal, S. (2005). Executive functions. In F. R. Volkmar, A. Klin, R. Paul, & D. J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 1, pp. 606–627). Wiley. Pennington, B. F., & Ozonoff, S. (1996). Executive functions and developmental psychopathology. Journal of Child Psychology and Psychiatry, 37, 51–87. Powers, M. D. (2000). Children with autism: A parent’s guide (2nd ed.). Woodbine House. Powers, M. D., & Poland, J. (2003). Asperger syndrome and your child: A parent’s guide. HarperCollins. Romanowski-Bashe, P., Kirby, B. L., Baron-Cohen, S., & Attwood, T. (2005). The OASIS guide to Asperger syndrome: Completely revised and updated: Advice, support, insight, and inspiration. Crown. Russell, J. (1997). Autism as an executive disorder. Oxford University Press. Rutter, M. (2005a). Aetiology of autism: Findings and questions. Journal of Intellectual Disability Research, 49(4), 231–238. Rutter, M. (2005b). Genetic influences and autism. In F. R. Volkmar, A. Klin, R. Paul, & D. J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 1, pp. 425–452). Wiley. Schreibman, L. (2005). The science and fiction of autism. Harvard University Press. Schultz, R. T., & Robbins, D. L. (2005). Functional neuroimaging studies of autism spectrum disorders. In F. R. Volkmar, A. Klin, R. Paul, & D. J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 1, pp. 515–533). Wiley. Siegel, B. (1998). The world of the autistic child: Understanding and treating autism spectrum disorders. Oxford University Press. Silberman, A. C. (2015). NeuroTribes: The legacy of autism and the future of neurodiversity. Penguin Random House. Smith, I. C., Reichow, B., & Volkmar, F. R. (2015). The effects of DSM-5 criteria on number of individuals diagnosed with autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 45(8), 2541–2552. Szatmari, P. (2004). A mind apart: Understanding children with autism and Asperger syndrome. Guilford Press. Thompson, T. (2007). Making sense of autism. Brookes. Towbin, K. (2005). Pervasive developmental disorder not otherwise specified. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 165–200). Wiley. Van Acker, R., Loncola, J. A., & Van Acker, E. Y. (2005). Rett syndrome: A pervasive developmental disorder. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 126–164). Wiley. Vivanti, G., Yerys, B. E., & Salomone, E. (2019). Psychological factors in autism spectrum disorders. In F. R. Volkmar (Ed.), Autism and pervasive developmental disorders (pp. 61–89). Cambridge University Press. Volkmar, F. R. (Ed.). (2007). Autism and pervasive developmental disorders (rev. ed.). Cambridge University Press. Volkmar, F. R., Klin, A., & Pauls, D. (1998). Nosological and genetic aspects of Asperger syndrome. Journal of Autism and Developmental Disorders, 28, 457–463. Volkmar, F. R., Koenig, K., & State, M. (2005). Childhood disintegrative disorder. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 70–86). Wiley. Volkmar, F. R., Paul, R., Klin, A., & Cohen, D. (Eds.). (2005). Handbook of autism and pervasive developmental disorders (3rd ed.). Wiley. Weber, J. (2000). Children with fragile X syndrome: A parents’ guide. Woodbine House. Wetherby, A. M. & Prizant, B. M. (2000). Autism spectrum disorders: A transactional developmental perspective. Brookes. Whitman, T. L. (2004). The development of autism: A self-regulatory perspective. Jessica Kingsley. Wing, L. (1981). Asperger’s syndrome: A clinical account. Psychological Medicine, 11(1), 115–129. Wing, L. (2001). The autistic spectrum: A parent’s guide to understanding and helping your child. Ulysses Press. Wing, L., & Potter, D. (2002, August). The epidemiology of autistic spectrum disorders: Is the prevalence rising? Intellectual Disability & Developmental Disabilities Research Reviews, 8(3), 151–161. Yuenn, R. K. C., Szatmari, P., & Vorstman, J. A. S. (2019). The genetics of autism spectrum disorders. In F. R. Volkmar, Autism and pervasive developmental disorders (pp. 112–128). Cambridge University Press.

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A

diagnosis is a label that serves as a shorthand way for professionals and others to communicate with each other very quickly.You might think this would be a simple business but at present there is not a simple blood or other medical test for autism and related disorders. Work is very much underway to identify specific biomarkers for autism. These might be based on some of the research on things like face perception or response to social stimuli (for example, by looking at faces while getting an EEG) or might be based on genetic testing. This could include testing for the increasingly long list of genetic markers for conditions, like Fragile X syndrome, that are associated with autism. But for the present, we continue to rely on good clinical judgement based on careful assessment. Diagnosis of autism and related disorders has its uses as well as its limitations. A diagnosis helps to “frame” the child’s needs, for example, for educational, speech, and language communication, and other services. There can sometimes be uncertainty about the diagnosis, particularly in very young children, which we discuss shortly. Some clinicians, particularly less experienced ones, can make the diagnosis incorrectly (so can more experienced ones, although this is less frequent). It is important to realize that diagnosis only helps us to know the general kinds of problems or issues presented; it does not tell us a lot about the specifics. Occasionally, a child with autism, particularly one with better cognitive skills, gets missed until later in childhood or even, rarely, until adolescence or adulthood. Sometimes parents want a label (for educational purposes) that may get their child the most services. As with many other things, life is lived in the details and it is the specifics about autism that are very important. For example, is the child verbal or nonverbal? Are there any motor difficulties? How socially related is the child? Are there any behavior problems that interfere with programming for the child, and so on? These issues are particularly important for autism and related disorders, given the wide range of disabilities we see in children with these conditions. Since we don’t yet know the exact cause of autism, we presently rely on observation, assessment of the child, and history to make the diagnosis. Various guidelines, rating scales, and checklists have been developed and they may help in making a diagnosis, but they never replace the importance of a skilled clinician. They can also be sometimes misused and misinterpreted by well-intentioned but less experienced examiners. This chapter covers aspects related to getting a diagnosis of autism spectrum disorders (ASDs). We discuss the uses and limitations of diagnosis, as well as what a good diagnostic evaluation consists of. We’ll discuss some of the more common ways that parents and professionals become concerned about 21

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the child and the kinds of behaviors that very young children with autism exhibit. We also address some of the more frequent complexities in diagnosis. As with other chapters in this book, it is important to realize that when we give examples, not every child will behave or develop in the same way and that the examples are just that. This chapter will be of greatest interest to parents of younger children, as well as to parents who are trying to understand what goes into an assessment of their child. In the next chapter we talk about the critical issue of translating the diagnostic assessment into services, and the chapters following discuss age-related aspects of ASDs.

First Concerns There are many ways that parents become aware that something is wrong with how their child is developing: • Sometimes parents gradually become aware that there is something about their child that is different—maybe the child seems less interested in the parents than expected, or has some unusual reaction to sounds or noise. • Other parents trace their concerns to a very specific event, such as seeing their child with other children of about the same age. • Occasionally, a grandparent or friend, or sometimes a day care provider or the child’s doctor, may mention that they are worried about how the child is doing. • Sometimes parents will say that, as they think about it, maybe there were some signs of trouble even earlier than they first thought. • Sometimes parents will say that their child was, as an infant, “too good,” making few demands on them. • At other times parents will tell us that the child had difficulties from shortly after birth, for example, being difficult to console or being very demanding. • Somewhat less commonly, parents will feel as if their child was doing reasonably well until, say, 18 months of age, when either the child lost ground or seemed to stop moving forward developmentally. • Parents who have already had one child may make comparisons and realize that their new child is developing in a very different way. We list some of the common warning signs of autism in Table 2.1. Probably the most common cause of concern is speech delay. Concerns that the child may be deaf are also very frequent, although usually, unlike deaf children, the child with autism seems to respond to sounds. The child with autism may use pointing to get things or may pull a parent by the hand (often with no or limited eye contact) to get something but does not seem interested in sharing attention. For example, the child rarely points to show things to parents. Some parents, especially first-time parents, may not have realized that there was anything unusual about this behavior and do not ask their doctor about it until 18 or 20 months, when their child is still not speaking. In other cases, parents may be worried about their child’s development even earlier. When this happens, it is often the child’s lack of social relatedness, that is, lack of interest in parents and other people, that



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First Concerns

TA B LE 2. 1   E A R LY W A R N I N G S I G N S O F A U T I SM .

Birth to 12 months: Social interaction problems:

•  Doesn’t anticipate social routines •  Doesn’t look much at other people •  Not interested in social games •  Little affection to family members •  Happy to be left alone

Communication problems:

•  Poor response to own name •  Doesn’t look much at objects held by others

Repetitive and stereotyped behaviors:

•  Doesn’t like to be touched •  Excessive mouthing of objects After 12 months (and before age 3) Social interaction problems:

•  Eye contact inconsistent •  Limited looking at other people •  Limited range of expression •  Limited pleasure in games •  Little motor imitation •  Poor play skills (no pretend, limited use of materials for play)

Communication:

•  Low rates of verbal/nonverbal communication •  Doesn’t share an interest with people (e.g., showing things) •  Poor response to name •  Doesn’t respond to gestures •  Uses other person’s body as a tool (e.g., takes hand of Mom or Dad to get a desired object but doesn’t look at them)

•  Unusual sounds Adapted with permission from K. Chawarska and F. Volkmar (2005). Handbook of autism and pervasive development disorders, (3rd ed., p. 230 ).Wiley.

causes concern. In our experience, parents are more likely to be concerned about this when they have had experience with children. Occasionally, parents will be worried because their child does not seem to enjoy contact with them, but is interested in odd or unusual aspects of the environment, such as rocking in a corner. Or parents may be concerned that their child has chosen an unusual transitional object for comfort. Rather than choosing something soft (and typical) such as a blanket or toy, something hard (and unusual) may be chosen. The child may also be less interested in the actual object than in the “kind” of object (for instance, carrying a specific magazine around and taking it to bed but not caring which issue of the magazine it is). Sometimes the child will have dreadful and almost “catastrophic” responses to certain

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events in the environment. For example, when the vacuum cleaner is used, the child runs upstairs crying and cannot be consoled for hours. Other children may have unusual aversions to food or certain smells. Occasionally children develop normally for a year or two and then development either seems to slow down gradually or sometimes very abruptly. This is less common but it is seen. When parents of children with autism are asked when they were first worried about their child, it is clear that many are concerned by a year and most by 16 to 20 months. By age 2, about three-fourths of parents will be concerned, and by age 3, essentially all parents, even those of more able children with autism will be worried. For other ASDs such as Asperger’s disorder, children are often even older before parents are first worried. Asperger himself pointed out that parents are more commonly concerned as the child enters nursery school and is exposed to typically developing peers. Usually, the child will have, if anything, seemed to the parents rather gifted and precocious (e.g., with an early interest in reading). However, the child’s good verbal abilities may stand in contrast to difficulties with social skills and motor activities. The fact that the child often seems to do well in some situations may mislead educators and other professionals or make them fail to appreciate the child’s difficulties. This may also reflect the fact that the child’s problems may be most apparent in some settings and not others. In the past, parents often had to fight to convince health care providers that something was wrong with their child. Fortunately, health care providers are usually now much more alert to developmental problems, although occasionally a physician may still reassure worried parents that their child is “just language delayed.” Children who have only language delay are, however, socially related and don’t have the unusual behaviors we see in autism.

Risk Factors Some probable or possible risk factors have been identified for autism.The strong risk factors are genetic ones. Having one child with autism substantially raises the risk for subsequent children to have autism or ASDs—probably to somewhere between 10 and 20% recurrence risk. There is also some suggestion that birth complications might be an associated risk factor for autism, although disentangling the complex potential effects of genetic vulnerability on birth complications is itself a difficult task. There is reasonably strong evidence to support increased paternal age as a risk factor in some cases (likely mediated through genetic changes in paternal sperm over time).

For Children Under 3 In the United States, there are specific agencies, professionals, and often teams of people who evaluate children suspected of having a disability. The names of these agencies vary from state to state; they may be called early intervention programs, or birth-to-three programs or something else. In some states, these services are under the control of state departments of education; in other states, they may be part of the departments of developmental disabilities or the department of health. These organizations usually will provide a team of people to establish a need for intervention services for the child under 3. After age 3, the public school system becomes responsible. For younger children the evaluation teams often vary considerably in terms of how much they know about autism. Typically, the team will establish a child’s levels of functioning and potential needs by



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For Children Under 3

doing some initial assessment of the child, talking to the parents and getting a history, and, sometimes, completing special checklists or rating scales. Table 2.2 provides a list of some of these—you will see that often they generally depend on parent report rather than on testing the child. There are now more than 40 screening and diagnostic instruments. Sometimes these teams feel confident about making a diagnosis; other teams may specifically wish to avoid giving a diagnostic label. Usually, the focus of these early assessments is establishing that the child is eligible for services rather than diagnosis as such. These teams may try to avoid giving a specific diagnosis because they don’t necessarily need one to be able to start services and they may be less comfortable being sure of a specific diagnosis. However, for autism, in particular, it makes sense to start intervention as soon as possible, since it is clear that for many (although not all) children with autism, early intervention can make an important difference in the child’s outcome. From the parents’ point of view, it may be appropriate for you to try to get at least a provisional diagnosis to help secure the most appropriate intervention program. As we mentioned, Asperger’s disTA B LE 2. 2   S E L ECT E D S C R E E N I N G I N ST R U M E N TS FO R A U T I SM .

Scale Name (abbreviation)

Age Range/Type of Screener

Modified Checklist for Autism in Toddlers (MCHAT) (Robins, et al., 1999)

16–30 months

Modified Checklist for Autism Revised with Follow-up (Robins, et al., 2009)

16–30 months

(M-Chat-R/F) Early Screening of Autistic Traits Questionnaire (ESAT) (Swinkels, et al. 2006) Social Communication Questionnaire (SCQ) (Rutter, et al.2003) Gilliam Autism Rating Scale-3 (GARS-3) (Gilliam, 2013) Childhood Autism Rating Scale, 2nd ed (CARS-2) (Schopler et al, 2010) Screening Tool for Autism in 2-year-old (STAT) (stone, et al, 2000) Social Responsiveness Scale, 2nd ed. (SRS-2) (Constantin and Gruber, 2012)

Level 1

Level 1

14–15 months

Administration

Comment

First-stage 23-items yes/ no (parent) with follow-up for screen positives Slightly shortened, 20 questions initially with followup as needed

Readily and frequently used Tends to overidentify

Newer version; better attempt to follow up

Level 1

14 yes/no items, parent report

Good at picking up real cases but may overly pick up other problems

4 years+

40-item scale

Looks at current and “lifetime” behaviors

56 items, 6 subscales

Now keyed to DSM 5

15 items/4 point scale (0 = normal to 4 = very autistic)

Can be used for diagnosis, requires some (minimal) training

12-item scale administered to child

Good balance in picking up cases of autism and not picking up other problems Caregiver (or self) report with an overall total score to reflect severity and five subscale scores; different forms for different age groups (adults can selfreport); readily administered and scored; aids clinical diagnosis

Level 2 3–22 years Level 2 2 years to adult Level 2 24–35 months Level 2 >2.5 Level 2

Easily done, different forms for different ages

Adapted and reprinted, with permission, from F. Volkmar and E. Wiesner (2017). Essential clinical guide to understanding and treating autism, (p. 30). Wiley.

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order is not usually recognized until after age 3. It is no longer recognized in the DSM-5, although individuals who had a “well-established” diagnosis can keep it; hopefully, clinical teams are aware of the special needs of the child with Asperger’s and can continue to provide appropriate services. The young child evaluation teams may use any of a number of different screening and assessment instruments. Sometimes pediatricians or primary care providers use these (often at 18 months and again at 24 months).There are what are called Level I Screeners—these are looking at development more generally; in contrast, Level 2 Screeners focus more specifically on autism. Some of these are summarized in Table 2.2. Others are available as well. Of the Level 1 screeners, the M-CHAT/M-CHAT-R/F are the most commonly used. The reading list has some information on the other screening instruments available, including some for older children and adults whose diagnosis has been missed (see Ibanez et al., 2014 for a very detailed review). The M-CHAT-R requires little or no training for health care professionals and is readily available (www.mchatscreen.com). In the first stage, parents respond to 20 yes/no questions (this takes only a few minutes). If children screen positive based on this screening then parents are asked a more structured series of follow-up questions to obtain additional information (5–10  minutes estimated time). The new version was modified in several ways, including dropping several items that did not seem to work well in the initial version, simplifying language for parents, and giving examples to clarify items. Unfortunately, with the older version it was not clear that the instrument worked as well as had been hoped and, as a result, many European countries have dropped the proposal for early screening instruments, relying instead on parental concern and health care providers’ awareness. This approach has been suggested by at least one U.S. federal agency group as well, although so far the American Academy of Pediatrics still recommends it be used. Sometimes, a diagnosis is delayed and other screeners might be used to help schools clarify the question of whether or not a student has autism. When screens are positive, you should expect your health care provider to follow up with referrals and further testing.

Comprehensive Diagnostic Assessments The state-designated early childhood intervention providers will usually conduct the initial, although often somewhat abbreviated, assessment to establish eligibility for services. Definitive diagnosis often is made as the child reaches the ages of 3 to 5. This reflects the fact that assessment instruments become more elaborate (often moving from “screening” or parent report to more traditional tests of the child’s development, i.e., of intelligence or communication, as we discuss shortly). Also, by around age 3, we can become most certain of a diagnosis (Campi et al., 2020). As children become eligible for school-based programs at age 3, schools may conduct more comprehensive assessments or refer parents to specialists or centers knowledgeable in the area. The school may not need a diagnosis to start its own program. Sometimes parents wish to obtain more detailed assessments or a second opinion. In addition to schools, various specialists and organizations around the country provide comprehensive diagnostic assessments for children at risk of having autism. Sometimes these more detailed assessments are provided by specialists working as individuals (who may or may not collaborate with professionals from other disciplines) and sometimes groups of providers may work as a team (Volkmar et al., 2014). States vary tremendously in terms of what is available—in some states there are designated centers that service this need as part of a more comprehensive “package” of autism-related interventions.



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Comprehensive Diagnostic Assessments

Often, university-based medical schools or clinics or children’s hospitals will have such programs and some parent groups will maintain lists of providers. A comprehensive diagnostic assessment will usually include a number of elements, varying a bit depending on the child’s age and current levels of functioning. Typically, this will include a careful history (important for establishing a diagnosis and also clarifying what additional studies might be needed); psychological testing, including tests of development or intelligence; as well as adaptive skills (“real-world”) functioning. It will also include tests specific to the diagnosis of autism. The results of the psychological assessment typically serve both as a baseline (against which subsequent progress can be assessed) and as an aid in treatment planning (observation and results of tests can help clarify areas of strength and weakness), and help in differential diagnosis. A speech–language pathologist (SLP) will often do an assessment of language and communication skills; this is sometimes deferred to the school, and if the school person is experienced it may be fine, but it is important that an experienced individual does this. Testing is not just limited to vocabulary but more broadly looks at communication and some of the features seen in autism. The speech pathologist usually has important contributions to make in developing a plan for intervention with a broad focus on fostering communication skills. Occupational and physical therapy assessments focus on sensory issues as well as gross and fine motor skills.The medical part of the assessment will include a detailed history, physical examination, and sometimes further medical testing. Depending on the history and examination, other professionals can also be involved, e.g., an audiologist for testing hearing, ophthalmologist for testing vision, neurologist, or geneticist. Table 2.3 gives an overview of comprehensive assessment. Issues in Assessment Children with ASDs typically exhibit some special challenges for assessment. Assessment of children with autism is both a science and an art. To do a good job, the people doing the assessment need to be able to do many things at the same time. They need to be able to see and interpret the results of their interactions with the child, keeping in mind both what is seen in typically developing children as well as in those with autism. Given the difficulties in social engagement and in learning, the examiners will have to use various methods to help ensure that the results are valid and reflect your child’s “true” abilities at that specific point in time. The science part of the assessment is that the examiner has to know exactly the limits within which they have to work (e.g., the specific ways a test must be done). The art part of the assessment is that the examiner also has to be flexible in understanding how, within the constraints of what is “legal” on the test, they can help the child be interested and invested in doing well. Usually, the goal for individually administered tests is that the examiner is trying to get the best possible performance out of the child while not violating the “rules” of the test.To this end, the examiner may use rewards or reinforcements (stickers, food, prizes, praise, opportunities to play). A very good examiner will quickly have a sense of how they must adapt to the child and will often then quickly get into a rhythm where the work with the child shifts easily from one task to another. The observations the examiner makes are just as important as the scores obtained. Parents often are concerned that their child’s performance may not be typical or representative. We try to have parents observe the assessment either in the room with us, or, when possible, through a one-way mirror (you can see the child working but they can’t see you). This gives parents a chance to

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TA B LE 2. 3   E VA LUAT I O N P RO C E D U R E S : A U T I SM S P EC T R U M D I S O R D E R .

1. Historical information a. Early development and features of development b. Age and nature of onset (e.g., gradual or dramatic) c. Medical and family history (especially for autism, but other conditions as well) 2. Psychological/communicative examination a. Estimate(s) of intellectual level (particularly nonverbal IQ); depending on age and level of functioning either developmental testing or IQ test b. Communicative assessment (receptive and expressive language, use of nonverbal communication, pragmatic [social] use of language) c. Adaptive behavior (how does the child cope with the real world and generalize skills?) d. Social and communicative skills evaluation relative to nonverbal intellectual abilities (is there a marked discrepancy?)

3. Psychiatric examination

a. Nature of social relatedness (eye contact, joint attention, imitation, attachment behaviors) b. Behavioral features (stereotypy/self-stimulation, resistance to change, unusual sensitivities to the environment, self-injurious behaviors, etc.) c. Play skills (nonfunctional use of play materials, developmental level of play activities) and communication, ability to play with peers d. Various rating scales, checklists, and instruments specific to autism may be used 4. Medical evaluation a. Search for any associated medical conditions (genetic, infectious, pre- and perinatal risk factors, etc.) b. Genetic testing (first tier, including chromosomal microarray and Fragile X testing) with more specialized testing if these are negative (see American College of Human Genetics for current recommendations) c. Hearing test (always indicated and not limited to simple three-tone screening) d. Vision screening e. Other tests and consultations as indicated by history and current examination (e.g., EEG, CT/MRI scan) if unusual features are present (seizures, physical anomalies, microcephaly, regression) 5. Additional consultations a. Occupational or physical therapy as needed b. Respiratory therapy and/or orthopedic specialists (Rett syndrome) Adapted with permission from F. Volkmar, E. Cook, C. Lord (2002). In M. Lewis, (Ed.), Child and adolescent psychiatry: A comprehensive textbook. Williams & Wilkins.

observe what we do and tell us if they see things that are unusual. Occasionally, parents realize that if they were to ask a question differently or with different materials the child might be able to do better— again, something we want to know (although we also want to know what the child will do when we show something in a very standard way). Sometimes parents are surprised both at what the child can, and sometimes can’t, do. The importance of examiner experience cannot be overemphasized. For example, some tests of intelligence are very verbal, and, given the problems with language, children with autism don’t always do so well with these tests. On the other extreme, there are some tests that are done totally without language, and, while the results of these tests may be helpful, they don’t tell us much about what the child can do with language-based material. Sometimes we’ll see the results of an assessment where an examiner has



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Psychological Assessment

used a test that is inappropriate for the child so the child just does poorly and we don’t know what to make of the results. As part of this work with the child, the examiner will try to get a sense not only of what the child is capable of, but also areas of strengths, weaknesses, or special interests that may affect programming. Also, the person doing the assessment will be alert for specific issues and behaviors that they observed and that are important either because they help with the issue of diagnosis or because they are important areas for intervention. For example, aggression, self-injury, or stereotyped behaviors may be helped through behavioral (behavior modification) or pharmacological (drug) intervention.

BOX 2.1  CHALLENGES FOR ASSESSMENT IN AUTISM

• • • •

Tremendous range of variability in levels of function (within and between children) Great variability in functioning across settings Behavioral problems may complicate assessment Lack of social interest makes it hard to get the child’s cooperation

Psychological Assessment This part of the assessment is concerned with helping to establish the child’s overall levels of cognitive ability (Intelligence or IQ), as well as describing their profiles of strengths and weaknesses. Any of a number of tests may be used (some of these are mentioned subsequently). Usually this testing will include, at a minimum, a test of cognitive ability or intelligence and some assessment of adaptive skills, as well as observation of the child and discussion with the parents. Observation of the Child Children with autism are quite variable in their behavior. As we mentioned previously, there are many issues in assessing a child with autism. New situations can be a problem, as can situations where the child is left to their own devices. Often the child’s behavior is best in familiar settings and when the environment is very “structured” with clear expectations of what they are doing. The professionals evaluating the child should try to get a sense of the range of the child’s behavior. Parents can also help them understand what is typical for their child. Usually, for most of the assessment, the examiners will be working in a very structured way with the child in an effort to get the best possible performance within the limits of the test or assessment they are doing.We try to get the child’s best performance by setting up a friendly but not overly stimulating environment and picking materials/tests that will be appropriate to the child’s needs. As previously discussed, there is both a science and an art to doing assessment with children with autism. For some portions of the time with the child, the examiner must decide to “pull back” a bit to give the child more opportunities for less structured interaction. The examiner may also need to decide what the right pace of the assessment is—this again depends on the child; some children respond better to a rather rapid pace, while others like to take things slow and easy!

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In our own assessment clinic for children with autism, we usually ask parents to observe all or portions of the assessment so they can tell us what is or is not so typical for their child. This has a number of advantages, including helping parents see what we and the child are doing. We do, however, have to remind parents of a couple of things. One is that, depending on the test or assessment we are using, we may have to ask a question in a very particular way. Sometimes parents will tell us afterward that the child could have answered the question if we’d asked it differently or used different materials. It is helpful for us to know this; at the same time we are interested in how the child responds to a very standardized question or item and so must work within the constraints of the specific test or assessment procedure we are using. At other times parents can be overly eager to help their child—sometimes up to the point of answering the question for them! When this happens, we usually see if the parent can watch the examination through a one-way mirror in the next room. That way they can tell us what is typical and what is not, without influencing the child’s responses. Diagnostic Tests for Autism As was true for screening instruments, a number of measures have been developed for more definitive diagnosis—some of these rely on parent report, others on observations; some require very extensive training and others relatively little. These instruments are designed to help (but to not replace) good clinical work (see Lord et al., 2014 for a comprehensive summary of diagnostic instruments). Developers of diagnostic scales face a significant challenge in that, unlike assessment of typical development, we need to understand the frequency and severity of symptoms/signs suggestive of autism. Be wary if an experienced clinician or team makes a definitive diagnosis based solely on a single instrument. As we’ve discussed in the previous section, the diagnosis is best made by an interdisciplinary team who work together to produce a detailed picture of the child’s development and behavior. Many different issues are involved in the use of these instruments (again, a little knowledge can be a dangerous thing) and sometimes people will use them in ways that were not intended. For example, we encountered a well-meaning school administrator who got access to a rating scale and, with no training in how to use it and very little experience with autism, decided a child “couldn’t have autism” based on her (incorrect) completion of the rating scale (to make matters worse, her score, which was done with no training at all, came out half a point below the usual cut-off for autism). Some of the scales require very specific, and sometimes extensive, training to complete. None of these scales are a substitute for a careful, thoughtful assessment by an experienced clinician. Many (but not all) of these instruments are listed in Table 2.4. The two instruments that are probably most commonly used at present are the Autism Diagnostic Interview–Revised (ADI-R) and the Autism Diagnostic Observation Schedule (ADOS). The ADI -R is an interview done with parents that focuses on the child’s social and communication skills, as well as other behaviors. This test, which can take a while to complete, was originally designed for research (to be sure that researchers in different parts of the world were diagnosing autism in the same way). It has the considerable advantage of being explicitly “keyed” or linked to the diagnostic criteria for autism in DSM-5. The ADOS is a companion instrument to the ADI-R; it focuses on assessment of the child using various activities. Other instruments commonly used at present include the Childhood Autism Rating Scale, 2nd edition (CARS-2), along with several others.These scales measure severity of autism either on the basis of parent



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Psychological Assessment

TA B LE 2. 4   S E L ECT E D D I A G N O ST I C A SS ESSM E N T I N ST R U M E N TS FO R A U T I SM

Name

Format and Comments

Autism Diagnostic Interview–Revised (ADI-R) (Lord et al., 1994).

Interview with parents to verify diagnosis of autism based on history of child (requires substantial training). Very well-done test used for research as well. Items keyed to categorical (DSM/ICD) criteria. Typically takes 90 minutes or more. Used for children with chronological and mental ages above 2 years. Issues with borderline cases. Assessment of the child, covering wide span in ability levels; assesses behaviors and features relevant to diagnosis of autism. Companion instrument to ADI-R, also very well done. Requires significant training. Items designed to elicit behaviors of type seen in autism. Four modules based on levels of individual’s language. Less useful for nonverbal adults/adolescents. Versions for different levels of language ability. A revision of an older instrument often used in schools. Can be learned very readily. Fifteen items rated on 4-point score (normal to very autistic). Scores > 30 suggest autism. Looks at severity of autism. The newer version works well; often used in schools. Norm-referenced; focus is on ages 3–22. Takes 5–10 minutes. Forty-two items grouped in three categories. Structured interview format, Recently revised, can inform IEP development. Older version may have under identified possible autism. Caregiver (or self) report with an overall total score to reflect severity and five subscale scores. Different forms for different age groups (adults can self-report). Readily administered and scored.

Autism Diagnostic Observation Schedule (ADOS) (Lord et al., 1999 original version) Childhood Autism Rating Scale (CARS-2) (Schopler et al, 2010) Gilliam Autism Rating Scales 2nd ed. (GARS-2) (Gilliam, 2013) Social Responsiveness Scale—2nd ed. (Constantino, 2012)

Reprinted, with permission, from F. Volkmar and E. Wiesner (2017). Essential clinical guide to understanding and treating autism, (p. 37). Wiley.

or teacher report or observation of the child. Instruments for assessment of possible Asperger’s disorder have been developed as well (see Volkmar & Wiesner, 2009, p. 71 for a brief summary of these and see Lord et al. (2014) for a detailed discussion of diagnostic instruments). Several other instruments are available for assessment of individuals with Asperger’s disorder. Given that, at least as an official diagnosis, Asperger’s has been around for comparatively much less time than autism, it is probably not surprising that there is less agreement about which of these scales is best to use. Tests of Cognitive Ability For younger children, developmental tests may be used; these tests provide information on the child’s functioning in different areas relative to other children of the same age. For somewhat older children (those nearing 5 or 6 years of age and sometimes younger) more traditional intelligence tests may be used. The distinction between developmental and intelligence tests is a somewhat arbitrary one and reflects, in part, the fact that the results of tests of this kind become more stable around the time most children traditionally enter schools. This is not a great surprise, since tests of intelligence were originally developed to determine who would need extra help in school. Typically, psychologists will administer more traditional tests of intelligence, while a range of professionals can administer developmental tests.Tests of intelligence usually provide an overall or “full scale” IQ score, as well as scores for verbal and nonverbal skills. Verbal skills often include such areas as the ability to define vocabulary words or explain similarities, whereas the nonverbal or performance skills can include areas such as the ability to recognize and reproduce patterns or assemble puzzles.

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In classical autism, particularly in younger children, nonverbal skills are usually much advanced over more verbal abilities.That is, it is common for a child to have a much higher nonverbal IQ. A child’s nonverbal abilities might be, say, at a level corresponding to IQ 75 or 80 (standard score), while their verbal abilities might be at the IQ 40 level. For higher functioning children with autism, this gap is usually not as great but may still be there to some extent. There is some indication that this situation is reversed in Asperger’s syndrome, where verbal skills are often better than nonverbal skills. Choices of IQ Tests There are many different intelligence tests available.The specific test or tests chosen will depend on several factors. For example, how much language is required (either to understand or respond to a request), how much does the test require transitions and shifting kinds of tasks, what are the social demands of the test, and how important is speed of performance? Generally, children with autism do best on tests that require less language and social engagement and fewer shifts and transitions. Since IQ tests can vary widely in how much they emphasize these factors, it is possible that the same child could get very different results on different tests.Thus, it is important that the psychologist choose the tests carefully, keeping in mind the specific circumstances and needs of the child. The choice of test (or tests) is up to the psychologist. He or she may try to start with something they think will be easier or more interesting to the child. Sometimes what seem to be minor differences in tests (more or less verbal tests) can actually be major changes for a child with autism; thus it is important that the psychologist have some experience in working with children with autism and be aware of the range of IQ tests available. Some of the more frequently used tests are listed in the Table 2.5. Adaptive Skills In addition to tests of development and intelligence, often there will be some attempt to understand how the child does in more typical settings. This concern with adaptive skills is important because often children with autism can do something in a very structured way, but have more trouble generalizing the skills to real-world settings. Tests of adaptive skills are usually done by interviewing parents. The results often add an important “real-world” perspective and help identify areas the family and school can work on together. Adaptive functioning (adaptive skills) is a concept distinct from IQ. For example, we have an adolescent patient with Asperger’s syndrome who has a verbal IQ of 140 (genius level), one of whose major preoccupations is solving very complex mathematical equations. But this same patient cannot walk into McDonald’s and get a cheeseburger and change! The latter skills—translating his mathematical ability into the real world—is what adaptive skills are all about. Assessment of adaptive skills is important both at the time of first diagnosis and also over time. For example, if there is a big gap between cognitive ability (IQ) and adaptive skill, there will be a need for specific and explicit teaching. The most widespread test of adaptive behavior is the Vineland Adaptive Behavior Scales, which assesses abilities in multiple areas including Communication (receptive, expressive, and written language), Daily Living Skills (personal, domestic, and community skills), Socialization (interpersonal relationships, play and leisure time, and coping skills), and, for children under six, Motor Skills (gross and fine). This test is done as an interview with a parent or caregiver; children only get full credit for things that they can do unprompted. Depending on how the assessment is set up, the psychologist may also engage the child



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Psychological Assessment

TA B LE 2. 5   S E L ECT E D T ESTS O F I N T E L L I G E N C E / D E V E LO PM E N T.

Test Name

Comment

Wechsler Intelligence Scales: Wechsler Preschool and Primary Scale of Intelligence, 3rd edition. (WPPSI-IV, 2012); Wechsler Intelligence Scale for Children, 5th edition (WISC-V, 2015), Wechsler Adult Intelligence Scale, 4th edition (WAIS-IV, 2008)

Excellent series of tests covering preschool (about age 4) to adulthood; assesses a range of cognitive abilities. Some tasks are timed, which is a challenge for many children with autism and related conditions (this actually may help document need for untimed tests). Typical profiles of ability are seen in autism and Asperger’s disorder. Excellent test; can be used with somewhat younger children. Wide age range. Nonverbal scale may ­underestimate abilities in ASDs. Excellent test; can be used from 3 to 18 years of age. Some language is needed (but not much). Somewhat more flexible for children with autism. Many of the ­materials interest children with ASDs. Language demands minimized and good sensitivity to possible cultural bias. Recently redone. A test originally developed for deaf children, recently revised. Provides assessment of nonverbal cognitive ability. Can be used for children with no expressive speech. Some teaching is allowed. Limitations include no verbal tasks. Can be used with very young children. Provides scores in nonverbal problem-solving, receptive and expressive language, and gross and fine motor skills. Scores from such developmental tests are usually less predictive of later abilities. Well-done test; covers wide range of ages (2.5 up to 18 years) and taps a number of different skills (not just overall IQ). Early years scales can provide an IQ for ­low-functioning children younger than 9 years old.

Stanford Binet Intelligence Scale, 5th edition (SB5) (Roid, 2003) Kaufmann Assessment Battery for Children, 2nd ­edition (KABC-II) (Kaufman & Kaufman, 2018)

Leiter International Performance Scale, 3rd edition (Leiter-3) (Roid et al., 2013)

Mullen Scales of Early Learning (Mullen, 1995)

Differential Ability Scales, 2nd edition (DAS-II) ­(Elliott, 2007)

Note: many other tests are available and tests are constantly being revised and reissued. The reading list pro­ vides some good books written for nonprofessionals on IQ tests and testing. Reprinted, with permission, from F. Volkmar and E. Wiesner (2007), Essential clinical guide to understanding and treating autism (p. 320). Wiley.

in play or drawing or other activities. Other tests of adaptive ability are available; their fundamental notion is the same – how the person meets the demands of everyday life. Sometimes other kinds of psychological tests are needed as well. Other Tests Other areas assessed can include achievement abilities (how much the child has learned). Particularly for individuals with an ASD, some aspects of neuropsychological testing can be important, e.g., for executive functioning, to see how well organized the person is in “forward planning” and problem solving. These tests look at problem solving through puzzles and other activities. Personality tests and projective tests are sometimes used, notably in older individuals (adolescents and adults) with autism/ASD and particularly Asperger’s disorder. These tests can be used to document problems in thinking and reality testing. They are not routinely done.

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Speech–Language–Communication Assessments Difficulties in communication are one of the central features of autism and a main focus of intervention. This is true even for higher functioning individuals with autism and Asperger’s disorder, who have significant problems in the social use of language. Typically developing children are quite communicative well before they begin to say words. In children with autism spectrum difficulties, these skills do not develop in the same way, so, for example, early (preverbal) methods of communicating such as reaching and pointing to show something to someone else may be quite deficient. When children with autism do speak, their speech is remarkable in a number of ways. The prosody (musical aspects) of speech may be markedly off so that the child speaks in a somewhat robotic (what speech–language pathologists call monotonic) way. Use of pronouns (which are constantly shifting relative to who is speaking and being referred to) are an area of difficulty for many children with autism; often, children with autism reverse pronouns, saying "you" instead of "I" for example. Another very common characteristic is echolalia— repeating the same word/phrase over and over—such as saying “wanna cookie, wanna cookie, wanna cookie,” having been asked, “Do you want a cookie?” Echolalia tends to persist over time, unlike in typically developing children where it gradually diminishes as the child becomes a more effective and sophisticated communicator. For the more able person with autism, difficulties in keeping up a conversation, in responding to more sophisticated language (e.g., humor, irony, sarcasm) may present significant obstacles. These are what speech–language pathologists refer to as pragmatic aspects (social aspects) of language. It is important to realize that problems in communication do not exist in isolation. Rather, these difficulties have a major impact on the child’s social and problem-solving skills. For example, children who do communicate verbally may rely on very idiosyncratic communication, which further contributes to social difficulties. For example, the child may say “the mailman is coming” any time something unexpected happens because the child remembers once when the mailman came unexpectedly early. The parents may understand what this phrase means but most people would not! Speech–communication assessments are important for all children with autism and related conditions, regardless of their level of functioning. For example, for children who are mute, an assessment of comprehension skills can be very appropriate. Speech–language pathologists (SLPs) are concerned with broader aspects of communication and not just speech, so might, for example, consider ways in which a child who is not yet speaking might be helped to communicate through some other means. The communication assessment should include several components. As was true for psychological assessment, the choice of tests and assessment procedures must reflect an awareness of your child’s unique circumstances. For example, the SLP may be interested in assessing your child’s ability to produce sounds and words if it seems like this is an area of specific difficulty. Various standardized tests of vocabulary (both of receptive vocabulary—what your child understands, and expressive vocabulary—what they can say) are available, as are more sophisticated tests that look at exactly how language is used. For very young children, fewer assessment instruments are available. Instead, observation of social functioning (such as during play) may augment the results obtained with more standardized tests.



  35

Speech–Language–Communication Assessments

Depending on your child’s age and ability to communicate, the SLP will assess different, usually multiple, areas of communication. These include measures of single-word vocabulary (receptive and expressive), as well as actual language use. There often is a significant gap between single-word vocabulary and the ability to use words regularly in conversation. As we mentioned before, sometimes the assessment will include evaluation of specific problems in language speech production (such as articulation) depending on the special needs of the child. Evaluation of the child’s ability to use language socially should always be included (Table 2.6). The kinds of tests used are quite varied. Some of them rely on parental report of the child’s skills, while others are based on assessment of the child by the SLP. Various assessment measures have been developed specifically for children with autism and related disorders; often these employ a more play-based format, as is appropriate for younger children and those with more restricted communication skills. For children who are not yet using words, the SLP is interested in the building blocks of language, including social interaction, play, and other behaviors with a strong communicative aspect. The goals include understanding what the child understands about communication with others (use of gestures and words), whether they understand communicative intent (the reasons for communicating), and the way the child communicates (behaviors, words, vocalization, gestures). The SLP will also be interested in learning how effective and persistent your child is as a communicator. For instance, does the child persist in trying to get something from the person and do they use more or less conventional ways to communicate?

TA B LE 2. 6   S E L ECT E D S P E EC H – CO M M U N I C AT I O N A SS E SSM E N T I N ST R U M E N TS .

Name

Comment

Peabody Picture Vocabulary Test, 4th edition. (PPVT-4) (Dunn & Dunn, 2007) Expressive One Word Picture Vocabulary Test, 4th edition. (EOWPVT) (Martin & Brownell, 2011) Reynell Developmental Language Scales, U.S. edition (Reynell & Gruber, 1990)

Measures receptive vocabulary (what the child understands). This score may underestimate child’s actual language ability. Age range 2½–90 years. Measures naming ability (what the child can label). Again, may overestimate child’s actual language ability. Age range 2–80+ years.

Preschool Language Scale-5 (PLS-5) (Zimmerman et al., 2011) Comprehensive Assessment of Spoken Language (CASL) (CarrowWoolfolk, 1999) Clinical Evaluation of Language ­Fundamentals, 5th edition (CELF-5) (Wiig, Semel et al., 2013) Test of Language Competence (TLC) (Wiig & Secord, 1989)

For 3–7½ years; provides measures of actual language use. Scores often lower than when single-word vocabulary assessed. Provides scores for verbal comprehension and expressive language. Materials attractive to children. Assesses receptive and expressive language; frequently used in schools. A direct assessment. Good instrument for younger children. Age range birth – < 8 years). Used from ages 3 to 21; only a verbal or nonverbal (pointing) response required (no reading or writing ability expected); test of various language abilities, including pragmatic ability (social language use) and figurative language. Used for children from 3 to 21 (two versions). Assesses various language skills related to school requirements. Useful for older and higher functioning children. Focuses on more complex aspects of language (e.g., ambiguity, figurative language, abstract language); ages 5–18.

Note: many other tests are available. Adapted and Reprinted, with permission, from F. Volkmar and E. Wiesner (2017), Essential clinical guide to understanding and treating autism, (p. 324). Wiley.

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For example, pointing at something they want and then looking at the examiner to request it is more conventional; pulling the person’s finger or hand to get something without making eye contact is less conventional. In addition, the reasons why the child communicates will be noted. That is, do they communicate only to get things, to protest, or to engage other people? The social quality, as well as the rate of communications, is also important. For example, does the child pair their communication with eye contact or gestures? When children are able to combine words, a different range of assessment tools becomes available. It becomes somewhat easier to assess the child’s ability to understand receptive and expressive language and relationships between words. Specific tests are chosen based on both the child’s age and level of language. For this group of children, sometimes one needs to make compromises or accommodations to get information that is helpful for purposes of diagnosis and treatment planning. For example, if the child is older but has limited language, the SLP may choose to use a test originally developed for younger children. Or, if the child has specific issues that complicate giving the test the usual way, some accommodation may be made. These changes might include repeating instructions, using reinforcement, or giving additional cues to the child. When these strategies are used, it does complicate scoring and interpretation of the test but may give valuable information for treatment. In addition to doing formal testing, the SLP will also usually include a period of play or interaction so that they can record a language sample. The latter, usually audio- or videotaped, can be used after the assessment to analyze the level and sophistication of the child’s spontaneous language. For older children and those with better language (including children with Asperger’s disorder) the usual tests of vocabulary levels and language abilities may tend to overestimate or inflate the child’s language skills and thus mislead school staff. For such children, the assessment should focus on more complicated aspects of language, including social uses of language, such as understanding humor and non-literal language (for example, “His eyes were bigger than his stomach”). For these children, often the results of the Vineland (see above) are more informative than many of the more usual language measures. For individuals who do speak, the Speech Language Pathologist (SLP) will often pay special attention to the child’s ability to modulate or moderate their tone of voice and volume as relevant to the specific topic or place.

Occupational

and

Physical Therapy Assessments

Occupational therapists (OT) and physical therapists (PT) may be involved either as members of the assessment team and/or in the school-based intervention program. Physical therapists are concerned with the child’s ability to engage in gross motor (large muscle) movements, and occupational therapists are often more concerned with fine motor (hand) movements. They also may help assess the child if the child has major sensory challenges, e.g., exaggerated and excessive responses to things like sounds, the texture or feeling of things, and so on. These specialists can provide input to classroom teachers as well as to parents on ways to help cope with and understand challenging behaviors, as well as motor difficulties, such as with writing and unusual sensitivities. Some selected tests of motor development or sensory–motor skills are listed in Table 2.7.



  37

Medical Assessments

TA B LE 2. 7   S E L ECT E D MOTO R A N D S E N S O RY A SS E SSM E N TS .

Name

Format and Comments

Sensory Experiences Questionnaire (SEQ) (Baranek et al., 2006) Evaluation of Sensory Processing (ESP) (Parham & Ecker, 2002) Sensory Profile 2 (Dunn, 2014)

Thirty-five items; targets children with autism (2–12 years); focuses on frequency of unusual sensory experiences. Used in children 2–12 years; 76 items on a 5-point scale.

Toddler Infant Motor Evaluation (TIME) (Miller & Roid, 1994) Test of Visual Motor Integration (VMI) (Beery et al., 2010)

Peabody Developmental Motor Scales, 2nd ed. (PDMS-2) (Folio & Fewell, 2000)

Normed on a large sample of children (ages birth–15); scales for caregivers and teachers focus on unusual sensory responses. Covers birth to 47 months; focuses on several domains based on rating of observed motor behaviors; requires considerable training. Widely used and well-standardized individually administered instrument (includes adults) Used for ages 2 through adulthood; assesses visual perception and motor coordination; easily done by a trained evaluator; useful in documenting fine-motor and visualmotor delays. Norm-references scores for fine- and gross-motor abilities; birth to age 5.

Note: many other tests are available. Reprinted, with permission, from F. Volkmar and E. Wiesner (2017), Essential clinical guide to understanding and treating autism (p. 327). Wiley.

Medical Assessments Medical evaluations can be conducted even when referral for early intervention or more comprehensive diagnostic assessment are in process.Typically, this includes the following: physical examination, a hearing screen (at a minimum) and full audiological evaluation if language is delayed, as well as screening for Fragile X and assessment for Tuberous Sclerosis.There have been significant changes in our understanding of the genetic basis of autism over the past several decades and in recommendations for genetic testing. We have moved from simple karyotype analysis to much more sophisticated assessments that look for variations in chromosomal structure (known as copy number variations), duplications and deletions, and other things (not always associated with known problems). Indeed, this is an area where knowledge has increased dramatically and cost has diminished markedly. The American College of Human Genetics has recommendations (Schaefer et al., 2013) and as those recommendations note, it is important for clinicians to be aware of the current guidelines as well as new research and to carefully document clinical reasoning in terms of pursuing (or not pursuing) more advanced testing, e.g., specific dysmorphic features. These new guidelines suggest two tiers of assessment—the first tier is expected to have the highest “yield.” The first tier of testing recommends chromosomal microarray and Fragile X testing (expected “yield” is about 10–15% of cases). The second tier of tests (with lower diagnostic yield) is suggested if the first tier tests are negative; this would include testing for the MPEC-2 gene associated with Rett syndrome (it can be considered in both females and males—particularly if the latter have some clinical features suggestive of Rett syndrome or a Rett variant).

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Putting It All Together Once the assessment is done, the evaluation team has the task of putting it all together. As much as possible, assessment results, particularly if done by an interdisciplinary team, should be integrated and used to translate the results into a single, sensible and realistic view of the child that the team can communicate to the parents and school. As a consumer and parent, you should understand the reports and the recommendations for intervention. Feel free to ask about what you don’t understand. Sometimes one can’t help but see many different specialists; in this case the lack of integration is often a major problem. In this situation, you can ask one of the specialists or your primary care provider if they can assume a major role in coordination and integration of all the various reports. A number of conditions may have some similarities to autism but may need other kinds of treatment. These include the various language–communication disorders, specific learning problems, intellectual disability (what used to be called mental retardation), and sensory impairments. Also various medical conditions (seizure disorders, Fragile X syndrome, and Tuberous Sclerosis) may be associated with autism. For older, more cognitively able children (who may come to diagnosis somewhat later), other issues include anxiety disorders, attention deficit disorders, and depression, among other things. Sometimes, to complicate matters further, some of these conditions (notably intellectual disability) can coexist with autism, or as children become older many also do exhibit anxiety problems in addition to their autism. Occasionally, developmental language disorders may seem to suggest possible autism but children with language problems typically will (unlike children with autism) make normal use of conventional gestures and also usually point to things of interest (to show parents). Differentiation from intellectual disability without autism can be difficult, particularly since many children with intellectual disability also have associated social delays and exhibit repetitive, stereotyped movements (the latter are the single least reliable sign of autism for just this reason). Social problems in autism typically are much more severe than would be expected given the child’s overall developmental level but differentiation can be difficult in the youngest and most cognitively impaired children. For children with more “classical” autism/ASD there is reasonably good agreement and diagnosis stability after age 3 years (Campi et al. 2020). For older children who already have a diagnosis of Asperger’s or PDD-NOS they can keep their label under DSM-5 but for cases just coming to diagnosis the new DSM-5 approach may present some important challenges. Delays in provision of intervention should not be delayed because issues of diagnosis are unclear.

Provision

of

Services

Having had a positive screen or, if significant concerns are present regardless of the screening, the obvious question is what to do next? We discuss these issues in detail in Chapters 5 and 6. For younger children early intervention/birth-to-three services can be utilized and after age 3 years (in the United States) schools assume responsibility. As we have noted, there is potential for things “falling through the cracks,” so it is important to be sure that follow-through has occurred and the child and family are connected to services. Due to health insurance issues, geographical location, and other factors, parents unfortunately do not always have that much choice when selecting a team to assess their child. If you can, try to connect with people who have worked together previously and who have considerable experience in diagnosing



  39

READING AND REFERENCES

autism/ASD and related conditions. The school may have its own team that can do this work. Other parents and often school staff will be able to give you good information about qualified professionals outside the school if that is needed. Sometimes your child’s primary health care provider can help you obtain local services and resources. It is increasingly the case that school-based professionals (psychologists, speech pathologists, occupational and physical therapists) are more familiar with autism/ASD. If there are disagreements, you may want to have your own (independent from school) assessments. The best of the interdisciplinary teams work well together. Unfortunately, others don’t. Sometimes parents and schools end up getting a plethora of individual reports with little integration or a report that lacks a single view of the child. Sometimes, we’ve seen separate reports from six or seven different professionals working in the same group, but with little apparent awareness of each other’s findings. This usually happens when the “team” members work as individuals rather than as a real team. Ideally, what is desired is a single, sensible, and realistic view of the child. At the risk of overstating what we hope is now obvious, parents and teachers should feel that reports, whether from a team or an individual care provider, should be understandable. Results should be translatable into programs for the person on the autism/ASD spectrum. For example, when we write reports, we tell parents that every one of the numbered “bullet points” in our recommendations is something that might well be included in the child’s individualized education plan (IEP) (see Chapter 4).

Summary In this chapter we have discussed first concerns, screening, and diagnostic assessments. Given the complexity of diagnosis, often multiple professionals are involved. They look at the child as well as the history. Some medical or psychological or speech-communication testing may be needed. The goal of the assessment is to both clarify what the nature of the child’s difficulties are and how best to intervene. Medical testing, particularly genetic testing, has become more sophisticated, although even now we don’t always find a specific genetic or medical cause and we don’t yet have a biomarker (that is a good, reliable diagnostic test) for autism. The clinical experience of the care provider or treatment team is important. Parents should feel part of the assessment and ask questions to clarify what they don’t understand. A good assessment is the beginning point for intervention and the good news is that with intervention, more and more children are making better progress—as we discuss later in this book. R EA D ING A N D R E F E R E N C E S *

*Indicates particularly recommended reading American Psychiatric Association. (2013)Diagnostic and statistical manual of mental disorders (5th ed.). Baranek, G. T., David, F. J., Poe, M. D., Stone, W. L., & Watson, L. R. (2006). Sensory experiences questionnaire: Discriminating sensory features in young children with autism, developmental delays, and typical development. Journal of Child Psychology and Psychiatry, 47(6), 591–601. Baranek, G. T., Little, L. M., Parham, L. D., Ausderau, K. K., & Sabatos-DeVito, M. G. (2014). Sensory features in autism spectrum disorders. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism/ ASD and pervasive developmental disorders (4th ed., pp. 378–407). Wiley. Beery, K. E., Buktenica, N. A. & Beery, N. (2010). Beery-Buktenica developmental test of visual–motor integration (6th ed., Beery VMI). Pearson.

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Bolton, P. F., Carcani-Rathwell, I., Hutton, J., Goode, S., Howlin, P., & Rutter, M. (2011). Epilepsy in autism: ­Features and correlates. British Journal of Psychiatry, 198(4), 289–294. http://doi.org/10.1192/bjp.bp.109.076877 *Campi, E., Lord, C., & Grzadzinski, R. (2020). Screening for autism spectrum disorder and developmental delays in infants and toddlers. In K. Chwarska & F. Volkmar (Eds.) Autism spectrum disorder in the first years of life: ­Research, assessment, and treatment. Guilford Press. Carrow-Woolfolk, E. (1999). Comprehensive assessment of spoken language. American Guidance Service. Chawarska, K., & Volkmar F. R. (2020) Autism spectrum disorder in the first years of life. Guilford. Constantino JN, Gruber CP (2012). Social Responsiveness Scale, Second Edition (SRS-2). Torrance, CA: Western Psychological Services. Coonrod, E. E., & Stone, W. L. (2005). Screening for autism in young children. In F. Volkmar, A. Klin, R. Paul, & D. J. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., in press). Wiley. Dunn, L. M., & Dunn, D. M. (2007). Peabody picture vocabulary test. 4th rf. (PPVT-4). Pearson. Dunn, W. (2014). Sensory profile 2. Pearson. Elliot, C. D. (2007). Differential abilities scale-II (DAS-2). Pearson. Folio, M. R., & Fewell, R. R. (2000). Peabody developmental motor scales (2nd ed.) (PDMS –2). Pearson. Gardener, H., Spiegelman, D., & Buka, S. L. (2009). Prenatal risk factors for autism: Comprehensive meta-analysis. British Journal of Psychiatry, 195(1), 7–14. http://doi.org/10.1192/bjp.bp.108.051672 Gilliam, J. (2013) Gilliam autism rating scale, (3rd ed.) (GARS-3). Pearson. Goldstein, S., Naglieri, J. A., & Ozonoff, S. (2018). Assessment of autism/ASD spectrum disorders. Guilford Press. * Hogan, T. P. (2002). Psychological testing: A practical introduction. Wiley. Huerta, M., Bishop, S. L., Duncan, A., Hus, V., & Lord, C. (2012). Application of DSM-5 criteria for autism spectrum disorder to three samples of children with DSM-IV diagnoses of pervasive developmental disorders. American Journal of Psychiatry, 169(10), 1056–1064. https://doi.org/10.1176/appi.ajp.2012.12020276 Ibanez, L. V., Stone, W. L., & Coonrod, E. E. (2014). Screening for autism in young children. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (Vol. 2, pp. 585–604). Wiley. *Jackson, S. L., & Volkmar, F. R. (2019). Diagnosis and definition of autism and other pervasive developmental disorders. In F. Volkmar (Ed.), Autism and the pervasive developmental disorders (pp. 1–24). Cambridge University Press. Kaufman, A. S., & Kaufman, N. L. (2018). Kaufman assessment battery for children, 2nd edition normative update. WPS. King, T. M., Tandon, S. D., Macias, M. M., Healy, J. A., Duncan, P. M., Swigonski, N. L., Skipper, S. M., & L ­ ipkin, P. H. (2010). Implementing developmental screening and referrals: Lessons learned from a national project. Pediatrics, 125(2), 350–360. http://doi.org/10.1542/peds.2009-0388 *Lord, C., Corsello, C., & Grzadzinski, R. (2014). Diagnostic instruments in autistic spectrum disorders. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and developmental disorders (4th ed., Vol. 2, pp. 610–650). Wiley. Lord, C., Rutter, M., & Le Couteur, A. (1994). Autism Diagnostic Interview-Revised: A revised version of a diagnostic interview for caregivers of individuals with possible pervasive developmental disorders. Journal of Autism and Developmental Disorders, 24(5), 659–685. https://doi.org/10.1007/BF02172145 Lord, C., Rutter, M., DiLavore, P. C., & Risi, S. (1999). Autism Diagnostic Observation Schedule--Generic (ADOS-G) [Database record]. APA PsycTests. https://doi.org/10.1037/t17256-000 Lord, C., Wagner, A., Rogers, S., Szatmari, P., Aman, M., Charman, T., & Yoder, P. (2005). Challenges in evaluating psychosocial interventions for autistic spectrum disorders. Journal of Autism & Developmental Disorders, 35(6), 695–708; discussion 709–611. http://doi.org/10.1007/s10803-005-0017-6 Mandell, D. S., Ittenbach, R. F., Levy, S. E., & Pinto-Martin, J. A. (2007). Disparities in diagnoses received prior to a diagnosis of autism spectrum disorder. Journal of Autism & Developmental Disorders, 37(9), 1795–1802. http:// doi.org/10.1007/s10803-006-0314-8 Martin, N. A., & Brownell, R. (2011). EOWPVT-4: Expressive one-word picture vocabulary test (4th ed.). Pro-Ed. McClure, I. (2014). Developing and implementing practice guidelines. In F. Volkmar, S. Rogers, R. Paul, & K. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders, Volume 2: Assessment, interventions, and policy (pp. 1014–1035). Wiley.



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READING AND REFERENCES

McClure, I., & Melville, C. A. (2007). Early identification key in autism spectrum disorders. Practitioner, 251(1697), 31. Miller, L. J., & Roid, G. H. (1994). The T.I.M.E.: Toddler and infant motor evaluation. The Psychological Corporation. Mullen, E. M. (1995). Mullen scales of early learning (AGS ed.). American Guidance Service Inc. *National Research Council. (2001). Educating young children with autism. National Academy Press. Parham, L. D., & Ecker, C. (2002). Evaluation of sensory processing–research version 4. In Bundy A. C., Lane S. J., & Murray E. A. (Eds.), Sensory integration: Theory and practice (2nd ed., pp. 194–196). F. A. Davis. *Paul, R., & Wilson, K. P. (2009). Assessing speech, language, and communication in autism spectrum disorders. In S. Goldstein, J. A. Naglieri, & S. Ozonoff (Eds.), Assessment of autism/ASD spectrum disorders (pp. 171–208). Guilford Press. Prizant, B. (2015). Uniquely human: A different way of seeing autism. Simon and Schuster. Reynell, J. & Gruber, C. (1990). Reynell developmental language scales. Western Psychological Services. Robins, D. L., Casagrande, K., Barton, M., Chen, C.-M. A., Dumont-Mathieu, T., & Fein, D. (2014). Validation of the modified checklist for autism in toddlers, revised with follow-up (M-CHAT-R/F). Pediatrics, 133(1), 37–45. http://doi.org/10.1542/peds.2013-1813 Robins DL, Fein D, & Barton M. The Modified Checklist for Autism in Toddlers, Revised with Follow-Up (M-CHATR/F). Self-published; 2009 Robins DL, Fein D, Barton M The Modified Checklist for Autism in Toddlers (M-CHAT). Self-published; 1999 Roid, G. S. (2003). Stanford-Binet intelligence scales (5th ed.). WPS. Roid, G., Miller, L., Pomplun, M. & Koch, C. (2013). Leiter international performance scale (3rd ed.). Stoelting. Rutter, M. (2006). Autism: Its recognition, early diagnosis, and service implications. Journal of Developmental & Behavioral Pediatrics, 27(2 Suppl), S54–58. https://doi.org/10.1097/00004703-200604002-00002 Rutter M, Bailey A & Lord C (2003). The Social Communication Questionnaire. Los Angeles: Western Psychological Service Saulnier, C. A., & Ventola, P. E. (2012). Essentials of autism spectrum disorders evaluation and assessment. Wiley. * Schaaf, R. C., Benevides, T. W., Kelly, D., & Mailloux-Maggio, Z. (2012). Occupational therapy and sensory integration for children with autism/ASD: A feasibility, safety, acceptability and fidelity study. Autism/ASD, 16(3), 321–327. Schaefer, G. B., Mendelsohn, N. J., & Professional and Clinical Guidelines. (2013). Clinical genetics evaluation in identifying the etiology of autism spectrum disorders: 2013 guideline revisions. [Erratum appears in Genet Med. 2013 Aug;15(8):669]. Genetics in Medicine, 15(5), 399–407. http://doi.org/10.1038/gim.2013.32 Schopler, E., & Van Bourgondian, M. (2010). Childhood Autism Rating Scale™, Second Edition (CARS™–2) Western Psychological Smith, I. C., Reichow, B., & Volkmar, F. R. (2015). The effects of DSM-5 criteria on number of individuals diagnosed with autism spectrum disorder: A systematic review. Journal of Autism and Developmental Disorders, 45(8), 2541–2552. https://doi.org/10.1007/s10803-015-2423-8 Sparrow, S. S., Cicchetti, D. V., & Saulnier, C. (2016). Vineland adaptive behavior scales (3rd ed.). (Vineland III). Pearson. Stone, W. L., Coonrod, E. E., & Ousley, O. Y. (2000). Screening Tool for Autism Two-Year-Olds (STAT): Development and preliminary data. Journal of Autism & Developmental Disorders, 30(6), 607–612. Swinkels, S. H., Dietz, C., van Daalen, E., Kerkhof, I. H., van Engeland, H., & Buitelaar, J. K. (2006). Screening for autistic spectrum in children aged 14 to 15 months. I: the development of the Early Screening of Autistic Traits Questionnaire (ESAT). Journal of autism and developmental disorders, 36(6), 723-732. Tager-Flusberg, H., Paul, R., & Lord, C. (2014). Language and communication in autism/ASD. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism/ASD and pervasive developmental disorders (4th ed., pp. 335–364). Wiley. Tsatsanis, K. D., Powell, K., Volkmar, F. R., Paul, R., Rogers, S. J., & Pelphrey, K. A. (2014). Neuropsychological characteristics of autism spectrum disorders. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism/ASD and pervasive developmental disorders (4th ed., pp. 302–331). Wiley. * Volkmar, F. R., Booth, L. L., McPartland, J. C., & Wiesner, L. A. (2014). Clinical evaluation in multidisciplinary settings. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism/ASD and pervasive developmental disorders (4th ed., pp. 661–672). Wiley.

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Volkmar, F. R., Klin, A., Siegel, B., Szatmari, P. et al. (1994). Field trial for autistic disorder in DSM-IV. The American Journal of Psychiatry, 151(9), 1361–1367. Volkmar, F. R., & McPartland, J. C. (2014). From Kanner to DSM-5: Autism as an evolving diagnostic concept. Annual Review of Clinical Psychology, 10, 193–212. http://doi.org/10.1146/annurev-clinpsy-032813-153710 *Volkmar, F., Siegel, M., Woodbury-Smith, M., King, B., McCracken, J., & State, M. (2014). Practice parameter for the assessment and treatment of children and adolescents with autism spectrum disorder. Journal of the American Academy of Child & Adolescent Psychiatry, 53(2): 237–257. Wechsler, D. (2008). Wechsler adult intelligence scale (4th ed.). Pearson. Wechsler, D. (2012). Wechsler preschool and primary scale of intelligence (4th ed.). Pearson. Wechsler, D. (2014). Wechsler intelligence scale for children (5th ed.). Pearson. White, S. W., Ollendick, T. H., & Bray, B. C. (2011). College students on the autism spectrum: Prevalence and associated problems. Autism, 15(6), 683–701. http://doi.org/10.1177/1362361310393363 Whitten, K., … Fernandez, B. A. (2015). Molecular diagnostic yield of chromosomal microarray analysis and whole-exome sequencing in children with autism spectrum disorder. JAMA, 314(9), 895–903. Wiig, E., & Secord, W. (1989). Test of language competence. Psychological Corporation. Wiig, E., Semel, E., & Secord, W.A. (2013). Clinical evaluation of language fundamentals (5th ed.) (CELF-5). Pearson. Wiig, E., Semel, E., & Secord, W.A. (2013). Clinical evaluation of language fundamentals (5th ed.) (CELF-5). Pearson. Wilson, C., Roberts, G., Gillan, N., Ohlsen, C., Robertson, D., & Zinkstok, J. (2014). The NICE guideline on recognition, referral, diagnosis and management of adults on the autism spectrum. Advances in Mental Health and Intellectual Disabilities, 8(1), 3–14. ISSN: 2044-1282 * Wodrich, D. L. E. (1997). Children’s psychological testing: A guide for nonpsychologists. Brookes. Zimmerman, I. L., Steiner, V. G., & Pond, E. R. (2011). Preschool language scale (5th ed.). Pearson. Zwaigenbaum, L. (2010). Advances in the early detection of autism. Current Opinion in Neurology, 23(2), 97–102. https://doi.org/10.1097/WCO.0b013e3283372430

APPENDIX

1

Understanding Assessment Results

It is common for schools to conduct assessments of the child; often parents may also pursue assessments from independent providers or interdisciplinary teams. In both situations, usually a relatively long narrative report will result. Given that individuals from a number of different professions are involved, it is ideal if the team provides a unified, coherent report integrating findings and observations. Less helpful is a series of tests conducted in isolation with little interpretation. In this appendix we provide a short guide to reading and understanding assessment reports. If you feel comfortable already you may well not need to review this information. But if you are unfamiliar with the issues, a quick review may be helpful. At the end of this appendix is a list of some reading materials that may be of interest as well. It is important for you, as a parent, to understand what people are telling you—so feel free always to ask questions and ask what numbers mean! Typically, a number of tests are used to assess the child’s abilities in various areas. With the exception of autism/ASD screening and diagnostic tests (where different issues apply as we discuss earlier in this chapter) the results for standardized testing are provided based on scoring of the individual relative to the “standardization sample” used to develop the test (i.e., a group that is representative of the “normal population”). Keep in mind that while numbers are important, observations of the child during the testing can be just as informative. In addition, particularly for children with ASDs the interpretation of the results is critical, e.g., a child may have a very isolated area of strength with many other areas of weakness. In such cases, parents may understandably want to focus on this strength—sometimes at the expense of not paying attention to the areas where the child needs help. The general idea is to look for areas of strength that you can use in helping the child deal with areas of weakness. In doing standardized tests, examiners have a set of rules to follow in administering the assessment. Violation of these rules makes results impossible to compare to the national or standardization sample— this can be very frustrating for parents who say quite rightly that “if you had asked the question a different way he’d have known the answer”—they are right, but so is the person who did the test! Some tests allow some teaching if a child doesn’t “get it,” although most don’t.The point in autism/ASD is that often children know things in isolation and their lack of flexibility and seeing things in different contexts can make it difficult for them to generalize knowledge—something itself that is important to know and work on. Finally, for the examiner dealing with the social difficulties, behavior, and communication

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issues in ASD can be a real challenge for testing. Often this means that the person needs to take more time in working with the individual with an ASD. Experience here does help! The person doing the assessment will be alert to specific problem behaviors that are important either because they help clarify issues of diagnosis or because they are important areas for intervention in the classroom and at home. For example, aggression, self-injury, or stereotyped behaviors may be helped through behavioral techniques (behavior modification or relaxation techniques) or by use of visual cues/ schedule, e.g., “We have three more to do then we’ll play with your iPad”). Similarly, within the constraints of doing the test in the standard way, the examiner has some flexibility, e.g., Do visual cues help? Does the child need frequent breaks and movement to help stay on task? What kinds of tasks present the greatest difficulty? All this information, based on observation during the assessment, can be a very informative part of the report and one that is tremendously helpful in the classroom and to the teacher and school team. Standardized scores can be presented in several ways but in all cases, there will be a mean (population average) and standard deviation (a measure of the variation around the mean). For many tests of intelligence, achievement, and communication standard scores provide the best way to compare scores both within the child and relative to other children/individuals. A long time ago, scores such as IQ were computed by taking the child’s age-equivalent score (mental age) and dividing it by the child’s actual chronological age and then multiplying the result by 100. Thus, a child with a mental age of 3 years and an actual age of 5 years would have been said to have an IQ of 60 (3/5 x 100). Nowadays, tests are developed and standardized in more sophisticated ways, but the general idea is the same. The distribution of standard scores falls on the famous (or infamous) bell-shaped curve. The average score will be in the middle, with other scores around it. For many IQ tests, the average or mean score in the general population is 100. That is, about 50% of people would score above 100, and 50% would score below it.These tests usually have what is called a standard deviation (measure of how the scores scatter around the average) of about 15. This means that most people (about twothirds) taking the test will score within 15 points above to 15 points below the mean, or between 85 and 115. Only about 2.5% of people will score more than 30 points (two standard deviations) above or below the mean. That is, only about 2.5% of people would have scores of 70 or below. Some tests will have different means and standard deviations, e.g., some tests use “T scores” where the mean is 50 and the standard deviation is 10. In the general population, it is common to have many of the individual’s scores cluster around the same number, although in ASD this is often not the case since there can be a great deal of scatter in the range of skills that IQ tests tap into for students with ASDs. The scatter itself is often informative since it tells us much more about strengths and weaknesses. When there is great scatter within an IQ, often an overall score is not reported, as it is rather misleading given the child’s variability. We’ve seen children with as much as a 70-point discrepancy between areas! Other kinds of scores are often reported as well. Age-equivalent scores are the easiest to understand but are often less useful than the standard scores. For example, hearing that a 6-year-old child has an age equivalent score of 5 years 2 months is harder to compare to a 5½-year-old child who has an age equivalent score of 5 years 3 months. In addition, age-equivalent scores are usually much more likely to fluctuate than the standard scores (performance on one or two items may increase or decrease the age-equivalent score more dramatically than it does the standard score). Other kinds of scores, e.g., percentile scores, are available as well. The reading list has some good resources for more information on assessments.

CHAPTER

3

Overview of Educational Programs and Interventions

T

he social, communication, and behavioral problems in individuals with autism present major challenges for learning from very early on in life. In the first years after autism was identified by Kanner there was little consensus on what to do apart from psychotherapy (which had little benefit). As time went on, however, it became more apparent that structured teaching could be effective and that some of the basic principles of learning derived from behavioral work in psychology could be used effectively. Before Public Law 94-142 (which we talk more about in the next chapter) was passed, many schools simply refused to provide programs for children they believed were “uneducable” and as a result many parents were left with little choice but to put the child into a state residential/institutional program where often children aged into adulthood and old age. Public Law 94-142 and its successors, now the Individuals with Disabilities Education Improvement Act (IDEA), requires schools to provide services to children with disabilities and we’ll talk about this in detail in the next chapter. As a result, schools began taking the leading role in educating all children with disabilities as children turn 3 and “graduated” from young child intervention programs. As we will talk about in the next chapter, a variety of issues arise but for more disabled children an individualized program must be developed and tailored to fit the child’s current needs and abilities consistent with the long-term plan or vision for the child. Areas of intervention typically address the core diagnostic features of autism—deficits with social interaction and communication—but also must focus on other issues including problems in learning. Schools must help students compensate for challenges in forward planning and organizational skills (what are often called “executive function” issues) and a major need for learning to generalize things over settings (adaptive skills). And of course, schools also have to provide an education. In the first decades after autism was described, specific intervention programs began, often started by parents desperate to avoid institutional placement. Some of the programs still exist today. There were other programs, often in association with colleges and universities, which were usually center based (you brought the child to the program) but over time these have been moved into community, school and home settings. Many of the older and more established programs have evolved over time. In this chapter we provide a quick review of selected “model programs” and specific interventions with some degree, of an evidence basis. As a parent you should be involved in designing your child’s program through the IEP (individualized education plan) development process. 45

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In 2001, an influential report from the National Research Council on Educating Children with Autism reviewed 10 programs in the U.S. that then had at least one peer reviewed study supporting their efficacy. This report was influential noting many similarities and some differences between programs and confirming that these evidence-based treatments were effective. Since that time work in the area has grown very substantially.The standards for what is evidence based have also changed and tightened considerably. In this chapter we’ll review some of these methods and programs. It is important to note that we’ll be talking about treatment techniques and programs that have reasonable levels of evidence-based research support. As you’ll see shortly, we discuss a number of model treatment programs and interventions that in our judgment have a moderate to strong evidence base—almost inevitably this means we are going to be citing specific works (all in the reading list) that describe these programs, or put another way, this chapter is going to have more references in the text than other chapters in this book! Box 3.1 highlights some of the aspects of evidence-based treatments. BOX 3.1  WHAT DOES IT MEAN TO BE EVIDENCE BASED?

Evidence-based practices really started in the medical field with an awareness of the need for more stringent reviews of what often was just accepted practice. Over time this work has extended into psychology, speech–communication, education, and other areas. This work has been used to develop “best practices” and evaluate both specific intervention techniques and model or “prepackaged” intervention programs. Over time these efforts have gotten much more sophisticated. Now the best evidence relies on either what are termed randomized placebo-controlled studies (half the group get the sugar pill and half the hopefully effective treatment) and participants and their primary supporters don’t know who gets what. Ideally, we’d like two such studies in different places. Some of the best kinds of supports come from “meta-analytic” studies, essentially studies of studies. These combine results from several studies to strengthen our confidence in the results. From there the level of standards goes down to other kinds of research-controlled trials for example, that lack randomization or placebo, and finally to single case reports and “received wisdom” (i.e., what you were taught in school). Some kinds of research, e.g., much of the applied behavior analysis (ABA) research is based on a massive body of single case studies (where something is done and behavior is observed pre- and post-intervention). Similarly, state-wide programs, like the North Carolina Division TEACCH,1 may be hard to fit into usual models given that they are, by definition, state-wide in nature. Also, it should be noted that some procedures are in common use but have never, ever been subject to a randomized trial (e.g., jumping out of airplanes with and without parachutes!). Educational and psychological issues can arise relative to the kinds of studies that can be designed and conducted, e.g., in the move of a treatment program from specialized treatment (academic) centers to more “real-world” settings. Official practice guidelines will typically attempt to summarize the strength of available evidence in making recommendations about potential treatments. Keep in mind a very important point in evaluating case studies vs. cases reports. Case studies are very common in the ABA world, i.e., a technique is used with a child (or often many children)

TEACCH: Treatment and Education of Autistic and Related Communication Handicapped Children.

1



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Model Programs

and data are gathered pre and post to show some change in behavior or development. We see these as being part of evidence-based treatment. On the other hand, case reports are just that— reports of an interesting case. These are essentially anecdotes. They may be interesting but don’t count as evidence-based treatment. These are the ones that tend to get sensationalized in the news media—keep in mind what Mark Twain (himself a reporter) said—there are stories that are true, stories that are false, and stories that appear in the newspaper! In education, counseling, psychology, and special education and related services the emphasis has increasing been on use off interventions that have been shown to have some evidence that they work. This typically is based on publication of research in scientific (peerreviewed) Journals. Some excellent reviews of educational practices and their evidence base are included in the reading list (e.g., Odom et al., 2019; Steinbrenner et al., 2020). Other good resources include the Cochrane collaboration (https://www.cochrane.org), the Campbell Collaboration (https://www.campbellcollaboration.org) and the What Works Clearinghouse (https://ies.ed.gov/ncee/wwc/FWW) There are some really excellent reviews of treatments in autism (Odom et al., 2019; Paul & Fahim, 2016; Steinbrenner et al., 2020; Watkins et al., 2019).

Again, it is important to emphasize that what results will reveal depends on what you set as your standards even before you start looking at the studies. The challenge in education and for medical issues is the translation of evidence-based knowledge into the care of the specific individual. We have discussed previously that it is important to start with a good assessment of the individual child and then develop a program for that child, looking at their strengths and weaknesses. Just using an evidencebased approach without a good plan for assessing how well it works is pointless! In some cases, model programs have been developed around evidence-based treatments in others specific evidence-based interventions will be used as part of a broader effort in a public-school setting. In this chapter we’ll talk about specific interventions as well as model programs with what we see as having at least a moderate to strong evidence basis. In a subsequent chapter (Chapter 14) we’ll talk about treatments that have little or no or emerging evidence bases. This is a complex issue and we should note that not everyone would agree with us, given their own particular model and definition of what is evidence based. For example, if you only want to include studies with randomized placebo-controlled trials and exclude single cases studies you are not going to list ABA approaches as evidence-based, even though these are some of the most well-established treatments in autism! Similarly, if you only want to include studies where there is an independent observer (that is you exclude teacher and parent reports) you’ll be very restricted in what you find. In our discussion here we’ll talk first about some of the model programs and then the specific techniques that have, in our judgment, emerged as evidence based with what we see as a moderate to strong level of support.

Model Programs Essentially several different kinds of programs have developed over time.These share many similarities as well as some important differences. These programs have variable degrees of evidence showing that the program is effective, which is a complicated issue for many (Paul & Fahim, 2016; Reichow et al., 2014).

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Keep in mind that in discussing any of these approaches the issue in reality relates to what a specific child needs. Teachers, and other parents can be effective sources of information and support, especially if they get to really know the schools in the area they serve. Some imporant terms and conepts are provided Box 3.2. BOX 3.2  MODEL PROGRAMS

Important Concepts and Terms

• Kinds of programs • Center-based programs provide services in a special setting. This might be in a special school or clinic (possibly affiliated with a college or university program in some way). These programs may be segregated (only children with ASDs or special needs) or inclusive (include some typically developing children). • Home-based programs provide services mostly within the home (although sometimes there is additional time in outside support programs or actual classroom/intervention time as well outside the home). These are often used for young children. • School-based programs provide services within the schools. This might be in an integrated, inclusive classroom (a mix of typically developing children and some children with ASDs or other problems) or a specialized (segregated) autism or special ed classroom (and many variations in between). • Program orientation • Behavioral/ABA: The original Lovaas and Rutgers’s Programs are good examples. • Developmental: The Early Start and JASPER (Joint Attention, Symbolic Play, Engagement, and Regulation) programs are good examples. • Hybrid: These combine some aspects of ABA and Developmental programs—Pivotal Reponse Therapy is a good example. • Eclectic: These types of programs draw on many sources—the North Carolina TEACCH program is a good example.

Model programs for intervention can be grouped into several general groups. This grouping reflects differences in approach or theoretical orientation. Sometimes these approaches may also be thought of as specific intervention techniques so they may be listed here and again when we talk about specific methods. Keep in mind that this is only a partial list and research is coming out all the time. • Behaviorally based/focused, or Applied behavior analysis (ABA), programs, employ principles of behavioral psychology in fostering learning—particularly “learning to learn” skills (like sitting and paying attention). Rewards are used to “shape” behavior. Discrete trial teaching is one of the more frequently used ABA techniques. In discrete trial teaching there is an antecedent, a behavior, and a consequence, e.g., if you are trying to have the child say the word “orange,” you might hold out an orange and ask, “What is this?” There would then be a behavior from the child (e.g., saying the word for orange or just reaching for it or maybe just making a sound) and then a consequence (giving the child the orange if they say the word or some approximation or even some sound—depending on the child—but withholding it if they do not).Typically, what is going to be taught is broken down into smaller steps, each of which is then taught (often many times) using prompts/rewards, which are then gradually faded over time. There is a very large and impressive



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Model Programs

literature on the effectiveness of these interventions, although it should be noted that it is almost entirely based on single case reports/studies (Odom et al., 2014). A number of such programs have been developed around the country (e.g., the Douglas Developmental Disabilities Center program (Harris & Handleman, 2000), the Lovaas approach (Lovaas & Smith, 1988), Princeton Child Development Institute (McClannahan & Krantz, 2004); these all have moderate to strong evidence supporting their efficacy. The Lovaas Model (http://www.lovaas.com/about.php) was one of the earliest in the field and similar programs have been developed as well, e.g., the Stepping Stones Center for ASD (https://www.autismspeaks.org/resource/stepping-stones-center-autisticspectrum-disorders-inc) and the Center for Autism and Related Disorders (https://www.center forautism.com). These treatments all use discrete trial approaches, sometimes in combination with other evidence-based practices like integrated play groups and small group teaching. • Developmentally oriented programs like the Early Start model developed by Sally Rogers (Rogers, Dawson, et al., 2012; Rogers & Vismara, 2014) build on the child’s interest using developmentally guided approaches to intervention for children with autism between the ages of 12–48 months. It uses play to build social connections and joint attention, as well as cognitive skills. It is based on a developmental understanding of early toddler learning and builds on positive relationships using everyday activities and play. Parents can be taught how to use it and training is provided in both group and individual sessions. A number of studies have now evaluated the program and it is one of several interventions that have been shown (in at least one research report) to result in brain changes. A very good introduction is available (Rogers and Dawson, 2010). • Hybrid programs include both developmental and behavioral approaches. The JASPER model (Kasari, et al., 2010) also combines important developmental and behavioral principles . It aims to foster important aspects of social communication (play, imitation, joint attention and task engagement). It uses naturalistic strategies and has now been well studied. It has been used in young children up to early school age and can be provided by parents, teachers, and paraprofessionals alike. A manual is available. Pivotal response training (PRT) is also a bit of a hybrid in that interventions are also based on ABA procedures but it has a developmental orientation focusing on behaviors seen as being key to learning and other skills (Koegel and Koegel, 2006). An important goal of this intervention is generalization of skills (use of same skills across settings with different people or materials). PRT procedures have been used to facilitate language, play, and social skills. There is considerable evidence in support of this PRT. This intervention also focuses on teaching parents both individually and in groups using the child’s interests and motivations. An excellent introduction is available (Koegel & Koegel, 2019). As with the Early Start model some research has now shown brain changes with treatment (Voos et al., 2013). Naturalistic developmental behavioral naturalistic interventions (Schreibman, 2005) also incorporate developmental and behavioral perspectives in teaching and use a more “naturalist” format, which incorporates different theoretical perspectives. They based their content on the developmental progression of skills, employ behavior analytic techniques in instruction, and employ a naturalistic format in following the interest of the child and implementing in common routines in the home and community.

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• Eclectic approaches like the Division TEACCH® (Schopler, 1997) draws from various techniques and methods. Aspects of this program, the first state-wide autism program in the U.S. are unique and some aspects have strong empirical support. At the same time this kind of approach is, perhaps, one of the most challenging to validate in the era of evidence-based treatments because it is indeed eclectic (Mesibov & Shea, 2010). With that being said there are important and unique aspects of these programs and some portions of them can be regarded as evidence based (https:// teacch.com). • School-based with support include programs like the LEAP inclusive preschool programs (Strain & Bovey, 2011), as well as specialized school programs like those in the Alpine Learning Group (http://www.alpinelearninggroup.org/about-us/staff-and-leadership.php) and the May Institute (https://www.mayinstitute.org). We should note that most of these programs have focused on preschool and school-age children although the Center on Secondary Education for Students with Disabilities (CSESA, http://csesa.fpg.unc.edu) has focused on adolescents (Odom, Duda et al., 2014) and some new programs for supporting students in college and vocational settings have also been developed (White et al., 2019). Some of these programs depend heavily on developing social relationships, e.g., the Relationship Development model developed by Gutstein and colleagues (Gutstein & Sheely, 2002) and to some extent the Greenspan model, although only some evidence is available for each and they should be regarded as emerging rather than well-established evidence-based treatments (Paul & Fahim, 2016). The original report from the National Research Council in 2001 has remained influential. It summarized that there were a number of commonalities among the programs for younger children which could point to at least one (or sometimes more) evaluation/outcome studies. These included: • Provision of a relatively intensive program (in terms of hours and levels of teacher support) as early as possible • Development of functional, spontaneous communication • Social instruction in various settings • For younger children enhancing play skills and peer play abilities (for older individuals this can be expanded to include the range of leisure time activities) • Enhanced academic and cognitive growth including a range of abilities and problem-solving skills and multitasking • Positive behavioral interventions for problem behaviors and reduction of behaviors that interfere with learning • Use of aids like visual supports, augmentative communication, and so forth • Functional academic skills as appropriate • Inclusion of a family component (this is particularly helpful for fostering generalization) • Opportunities for interaction with typically developing peers relative to specific goals • Provision of an appropriate and supportive physical environment for learning (e.g., relative to minimizing distractions) The overarching goal is to help the child acquire as many skills as possible to enable the individual to be as productive and self-sufficient as possible as an adult. As we, and others, have repeatedly emphasized,



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family involvement is essential to this effort. To the extent possible, the individual person also needs to be a part of the planning process—particularly as they mature. By law, this should clearly be in place by high school.

Autism-Focused Interventions

and

Curricula

An effective curriculum will be individualized and include observable goals and objectives within the context of a longer-term vision for the student (Olley, 2005; Hume & Odom, 2007) It cannot be overemphasized that the curriculum should fit the child and not vice versa.The curriculum for students who are fully included requires special planning. This typically entails a well-done individualized educational plan (IEP) with critical support from teachers and aides. Interestingly, sometimes the commitment to full inclusion (Hume & Odom, 2007) can present significant obstacles for the child with autism or ASD; for example, it may require the child to learn some activities in the community but this will remove the child from the traditional classroom settings. There is an excellent overview of curricula for children with autism by Kabot and Reeve (2014). Sometimes ASD children exhibit one or more isolated academic areas of real strength. They often seem to have an interest in iconic (visual) images, which may start with things like signs or hood ornaments on cars but often extends into letters and numbers. It is not uncommon for very young children with autism to be fascinated by the letters or numbers on building blocks but ignore their use as building materials. Some children develop early reading abilities.The term hyperlexia has sometimes been used to describe this phenomenon. Hyperlexia is the isolated ability to read single words with greater proficiency than you would otherwise expect, given the child’s age or other areas of difficulties. Some children with autism or other ASD (e.g., those with Asperger’s) can become effective early readers. Sometimes, however, reading to “decode” (to say the word out loud) may greatly exceed the child’s ability to understand. Good tests of reading ability are available and it is important to make sure that good reading includes understanding as well as decoding before making this a major part of the child’s program. Careful attention has to be paid to the learning environment and other factors that affect the child’s ability to learn within their program. For example, the use of simple organization aides, like visual schedules or use of functional routines and activity schedules, can enhance learning by helping with transitions, providing a structure for learning, and decreasing problem behaviors.

Evidence-Based Intervention Practice

and

Techniques

It is important to note that in addition to model programs, specific educational behavioral techniques have come to be seen as evidenced based. The observation (early on) that structured teaching was more helpful to children with autism inspired a large body of behaviorally based interventions using the principles of learning theory. The various ABA approaches to intervention use these techniques very effectively—particularly when the clinician is experienced and has a good sense of the individual’s needs and challenges. We talk about specific methods in greater detail in the chapter on behavioral intervention (Chapter 12). Keep in mind that these interventions typically have a very strong research base, although mostly in the form of single cases studies i.e., the same children before, during, after, an intervention.

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Some of the strongest model programs in the country use these methods. A very recent summary of the most current list of evidence-based interventions is available online (Steinbrenner et al., 2020).Table 3.1 lists some of the evidence-based practices used in helping children with autism.

TA B LE 3. 1   E V I D E N C E- B A S E D P R A C T I C E S W I T H S U BSTA N T I A L S U P P O RT.

AS LISTED IN THE RECENT (2020) Steinbrenner et al. comprehensive review Number of Studies 1990–2017

Area

Practice

Augmentative/Alternative Communication (AAC)

Visual Supports

65

Functional Communication Augmentative and Alternative Communication Alternative, Incompatible, or Antecedent-based Interventions Behavioral Momentum Differential Reinforcement of Alternative, Incompatible, or

31 44 49 12 58

Behavioral/ABA

Cognitive/Behavioral

Movement/Exercise Music-based Interventions Parent-based Sensory ** Social

Teaching/Computer/Video

Other Behavior (DR) Discrete Trial Training (DTT) Extinction Functional Behavioral Assessment Modeling Naturalistic Interventions Other Behavior (DR)

38 25 21 28 75 140

Prompting Redirection Redirection (RIR)

106

Reinforcement Response Interruption Task Analysis Time Delay Self-Management Cognitive Behavioral/

29 13 31 26 50

Instructional Strategies (CBIS) Exercise and Movement Music-based Interventions Parent-implemented Intervention (PBII) Sensory Integration® Social Skills Training Social Narratives Peer-based Instruction and Intervention (PBII) Direct Instruction (DI) Video Modeling Technology-aided

17 7 55 3 74 21 44 8 97 40

Instruction and Intervention Footnote: Adapted from The 28 EBPs, their abbreviated definitions, and the number of articles from each review period and the total number of articles that contributed to including during the review period. Please see ­Steinbrenner et al. (2020) for additional information including summaries of each treatment approach. ** Note refers specifically only to the model developed by Jean Ayres (2005).



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Social Skills Social skills are an obvious area for support given the centrality of social difficulties in the expression of autism. Having better social (and social–communicative) skills helps students to achieve higher levels of peer acceptance and integration into the community. There are essentially three approaches to teaching social skills: adult led approaches (teacher or clinician instruction/therapy), peer-based approaches, and combination approaches (e.g., social skills groups with peers and an adult or adults present). The peerbased approaches have, by far, the strongest base in the research literature and tend to revolve around integration of preschoolers and young school-age children in mainstream educational (Kohler et al., 2005). Peers can be highly effective teachers but need to be given (simple) instructions on how to interact, e.g., the “stay, play, talk” with your buddy approach (Goldstein et al., 1992) and the LEAP program (Strain & Bovey, 2011) are good examples. Social skills become increasingly sophisticated and complex in the school years as there is a shift from play to games with rules (including sports). For typically developing children the first more intense friendships also typically develop at this time and the child with an ASD may become aware of feeling isolated. Social skills interventions in the school-age group tend to more frequently involve adults (that is, with one-on-one instruction) or hybrid methods (social skills group in which an adult and other children are present). Adult-based approaches range from more focused, ABA activities for more cognitively or socially impaired students to more naturalistic ones (Reichow et al., 2013). Teaching of social skills may go on in individual sessions with the speech pathologist with work then done with the teacher and parents to help generalize skills. Behavioral techniques and visual supports can be used as well (Myles, 2013). Several good models have been developed including Social Stories™, which teaches new strategies for solving problems and producing more socially acceptable solutions (Gray, 1998). For the typically developing adolescent, a very high level of social awareness is usual (even when done in a decidedly “casual” way adolescents are extremely social creatures). For the adolescent or young adult with an ASD this can be a source of great discomfort, as the tendency to be overly literal and rule oriented comes at just the time when the typical adolescent is highly aware of the uses of ironic and figurative language. Social skills groups are one of the most frequent methods for teaching social skills, particularly in the elementary and middle school years. These groups can be limited to children with difficulties or can include typical peers—the latter becoming valuable role models. The adult(s) monitor the ongoing group activity, intervening as appropriate but with the goal, as much as possible, of having group members provide helpful feedback. A number of excellent resources for social skills groups and social skills training are provided in the reading list. Parents looking for social skills groups outside the school setting should talk with other parents about their experiences and to obtain names of experienced group leaders. It is important to realize that social skills groups are conducted by individuals with a range of training (there is no formal certification program). Groups are frequently conducted by psychologists, social workers, speech pathologists, and others. Teachers can also be helped to think about teaching social skills directly in the classroom. Unfortunately, there is relatively little research on adolescent and adult social skills interventions, although more resources are appearing (Walton & Ingersoll, 2013). Many of the methods previously described can be used, particularly for individuals who are less verbal. Sadly, by this age typical peers

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have dramatically moved ahead in their social experience and peer-based methods are not as promising. However, adult-based approaches can be quite effective, particularly for helping the individual learn specific skills/tasks. Some valuable guides to teaching common social problem solving have been developed, e.g., The Hidden Curriculum (Myles, 2004) gives an overview and discussion of some of the more common social situations and ways that more able individuals on the autism spectrum can be helped to deal with them. One relatively recent meta-analysis found that overall social skills intervention had a moderate effect for individuals with autism (Reichow et al., 2013). Communication and Language The development of communication skills broadly defined (i.e., not just speech) is a critical component of intervention programs. Some excellent resources for parents are available (Paul & Fahim, 2016). For the typically developing child the onset of language proceeds seamlessly during the first months of life. At birth, typically developing babies will orient to the faces and sounds of their parents. By 6 months they vocalize with good intonation (the musical aspect of speech), are beginning to respond to voices even without a visual cue, are starting to detect feelings conveyed by the voice, and are beginning to respond to their own name. By a year of age, a truly tremendous amount of language development has occurred, even before the child says their first word. Between the first and second year of life, a tremendous explosion of language ability typically occurs, with infants able to begin to think more symbolically. By the second birthday, the child will often have several hundred words. The situation in autism and related disorders is a very different one, and communication problems are a core challenge and important target areas for early intervention, given their importance for long-term outcome.The infant with autism may not babble, or will produce the entire range of sounds rather than developing those unique to the language they are immersed in. As Kanner first noted, when language does develop, unusual features are present. For children with no spoken language there are problems in establishing intentionality, joint attention, limited reciprocity, and nonverbal abilities. As language begins to emerge in ASD it often is limited and tends to be inflexible. As a function of the gestalt learning (learning in chunks) style, echoed language is common. Echolalia (repeating things over and over) was noted by Kanner but over time the child may start to break the language chunk apart and change it (mitigated echolalia). Problems with the musical aspects of language (prosody) take the form of monotonic or robot-like speech. Problems with pronouns, and problems with the social use of language (pragmatic problems) are found. Some children use idiosyncratic language, that is, where the child uses words or phrases whose meaning is unique to them. Some children learn to say many words, but their language understanding lags behind what they can say (the reverse of what happens in normal development). Interestingly, some areas of language development are not typically impaired, e.g., articulation, or the ways words are said. Social language skills are typically very important targets for intervention at whatever level of language the child has. As children start to develop some language and use it to express their experience, social interchange becomes more important. Prior to that, the meaning or intention must be inferred through behavior or sometimes through use of nonverbal visual aids/supports (picture exchange or object exchange). A host of procedures/approaches have been used to teach communication and language skills; the recent book by Paul and Fahim (2016) has an excellent review of approaches and the evidence supporting these. The approaches will be selected in consultation with the treatment team at school and



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may be delivered/supervised by the speech pathologist (or sometimes others, e.g., a school psychologist) and will vary depending on the child’s age, cognitive ability, and level of communicative ability. Methods are available for parents at home to stimulate language and use of peers and small groups can be an excellent opportunity for stimulating language learning. The Early Start and JASPER programs include a strong focus on developing communication skills. Several different approaches are used in fostering communication abilities (Tager-Flusberg et al., 2014). Some are more didactic, teacher-directed methods that are based in learning theory. Other approaches are more naturalistic using similar principles but in more natural settings, often trying to incorporate the child’s natural motivations. Another set of approaches are sometimes called developmental or pragmatic; here the emphasis is on using a range of materials and methods on a trial-anderror basis to see what works. Some methods are more heavily teacher directed; others try to maximize naturalistic methods. It is important to realize that the ability to communicate also is very closely related to behavior. When children on the autism spectrum have either limited or very unusual (and sometimes very idiosyncratic) ways of communicating, behavior problems may result. Communication issues also can arise, somewhat paradoxically, in older and more able children and adults. The person with Asperger’s may talk on and on but have real trouble having a genuine conversation with a back-and-forth information exchange. Accordingly, a focus on communication should always be a major part of the program for any individual with an autism spectrum diagnosis. Some children with autism never learn to talk (fortunately, this is less so than in the past). Special methods can be used to foster communication (more broadly defined). Parents sometimes worry if these augmentative communication approaches are used in a young child that it means the school is giving up on the child talking; in fact, anything that helps the child be more communicative will help and may foster speech (Mirenda, 2014). These approaches vary in a number of ways and are adapted to the child’s level and patterns of difficulties and can be used in combination with other approaches. A somewhat different approach is embodied in the use of computers/applications that help the child communicate and organize. Yet another approach uses devices that essentially talk for the child. For example, the child may push a button and the machine says “hello” or “cookie.” These devices are very sophisticated but, unfortunately, their ability to produce a broad range of language initiations or responses is rather limited. For some children all these approaches are still too advanced. In these cases, use of actual objects may be helpful. Another line of intervention for early language development in autism has focused on more naturalistic and developmental approaches. One approach of this type was developed at the Hanen Centre to help parents stimulate language developing in children with various disabilities; the book ‘More than words’ by Fern Sussman (1999) uses this approach to outline a series of developmentally based interventions including imitating the child’s sounds and words, modeling and engaging in games, using visual support and music, and following any leads produced by the child. In this model, any behavior is treated as a form of communication. The Early Start model is effective for children with a wide range of learning styles and abilities. The ESDM can help children make progress in their social skills, language skills, and cognitive skills. Children who have significant learning challenges can benefit just as much as those without learning challenges. Parent involvement is a key part of the ESDM program. Therapists should explain and model the strategies they use so that families can practice them at home.

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Another population program, the Social Communication Emotional Regulation Transactional Support (SCERTS) model (Prizant et al., 2004 and www.scerts.com) uses a multidisciplinary approach focused on communication and social-emotional development of young children with autism and related disorders. Areas of emphasis include social communication, helping the child regulate his or her emotions, and supporting transactions with others. Family are actively involved in this process. More information on the SCERTS approach is provided by Prizant et al. (2004) and at the SCERTS web site (http://www.scerts.com). It should be noted that there are no good studies evaluating this treatment, although it is uses many specific techniques used in programs with a strong evidence base. Quill (2000) similarly has developed a curriculum focused on enhancing social and communication skills. Her approach draws on a range of methods including both highly structured and more naturalist settings.Typical peers are given coaching and then used to help the child with an ASD learn to be more effective as a communicator and play partner. The more naturalistic and developmentally based methods are very popular with schools and parents. However, rigorous research comparing all the various approaches is pretty limited. In contrast to the much more structured, behaviorally oriented approaches, naturalistic ones require considerable training of all concerned and, to some extent, can be much more dependent on the presence of a sensitive member of the treatment team who “gets” the importance of the particular approach. It is important to realize that use of one of these more naturalistic teaching methods still requires considerable planning and work if it is to be implemented successfully. Expanding Language Abilities and Unusual Language Features Once children start using some words, and maybe start putting words together, a wide range of methods can be used to enhance communication skills. These can include ABA-based discrete trial or pivotal response approaches as well as more naturalistic approaches, for instance, setting up situations where children will be tempted to use their language. The Teach Me Language book (Freeman & Dake, 1997) has a well-developed approach to help children move from single words to more sophisticated language. For the more cognitively able and older individuals, e.g., with Asperger’s and higher functioning autism, both similar and somewhat different issues arise. For these students, communication issues often have less to do with saying words and vocabulary building and much more to do with social language use. Problems can arise in several ways. For some children prosody and talking in a very loud voice can be a major problem. Work on prosody can include use of audio or videotape recorders or other devices (for practice and feedback). Some computer programs have been developed for prosody problems in other conditions and may be useful in autism. For children who speak in a very loud voice (what speech pathologists call register) it probably doesn’t make much sense to try to develop the many different levels of voice that most of us have. Rather, it may make more sense to focus on three voice loudness levels: soft, medium, and loud—and then teach which one goes where: loud voice at recess, medium voice in class, soft voice at church. Work on conversational and social skills can dovetail nicely with social skills groups or social skills teaching programs. This can include work on listening and turn taking, inviting feedback, and the use of language to express feelings and to help with self-regulation. Explicit teaching of social conventions can be helpful.The tendency for individuals on the autism spectrum to be highly literal can lead to all kinds of miscommunications. Accordingly teaching aspects of figurative language, idioms, and slang can be explicitly taught (see Myles et al., 2004 for some helpful examples). A number of good resources are available.



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The evidence supporting these various language–communication interventions is rather variable with some methods having reasonably extensive bodies of research and others very little. The Paul and Fahim book (2016) provides helpful information and parents (and teachers) can use it to research specific methods. Organizational Issues/Supportive Technology Children, adolescents, and adults with ASDs face many challenges for learning because of their problems with multitasking (or executive functioning, as it is often termed—see Box 3.3). It is likely that some of these are the direct result of the social disability itself, while others come about basically as “fallout” of the social problems. Often there may be early problems in things such as learning-to-learn skills, i.e., sharing a focus of attention, staying seated, and focusing on the teachers, etc. Developing executive functioning means one can be oriented to long-term goals, and includes things like flexibility, planning, organization, self-monitoring, and multitasking. These issues are important throughout life. These problems are not unique to autism but can have serious consequences for learning. BOX 3.3  EXECUTIVE FUNCTIONING DEFICITS/DIFFICULTIES

Problem Area

Resulting Difficulty

Planning and ongoing evaluation

Difficulties in forward planning and monitoring lead to focus on short-term goals, ­failure to see “big picture”

Flexibility

Rigid thinking patterns see only one solution to a problem, results in child getting stuck on one step/stage of a project, can’t do “work-arounds”; novelty can create ­behavioral issues

Inhibition

Tendency to perseverate, stick with previous responses/ strategies, can’t shift to changed problem

Various strategies can be used very effectively to deal with problems of organization and executive functioning deficits. These can take many forms. One of the simplest to use in the classroom (and at home) is visual supports. Say, for example, that a 4-year-old child with autism has significant difficulties with transitions. One approach within the classroom (and at home) would be to put up a visual schedule with pictures of the daily activities. Depending on the child’s language and cognitive levels, variations on this theme can be adopted; for instance, there can be a written label “circle time” if that is appropriate. Similarly, at home, the child’s day can be put up on the fridge with magnets, with each photograph turned over when an activity is done. At the end of the day, parents can review what the child did. An entire literature on visual supports now exists and has proven very helpful to teachers and parents alike. A series of excellent books by Linda Hodgdon (2011, 2003) on the use of visual strategies is very practical and gives helpful guidance to teachers and parents on how to use these approaches in the classroom. A range of more sophisticated apps and other computer-based supports and learning programs are available as well. Some focus more on organization (with visual lists, timers, reminders, and so forth). Others are more focused on projects (e.g., writing papers or taking notes). The reading list includes a number of relevant resources. The Smart but Scattered book series is very helpful! (Dawson & Guare, 2009; Guare et al., 2013)

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For students who need visual reminders, a visual timer that gives students a clear visual sense of what time is left for a task can be helpful. Particularly when students have trouble “getting stuck” (this often happens in things like spelling) using a timer to indicate when studying is done can help. Other aids can include electronic organizers, tape recorders, and computers. Even within the high-tech end, some approaches are fairly simple to implement. For example, a fourth-grade boy who was very high functioning (but quite disorganized) had the task of writing a two- to three-page paper on the history of Egypt. The boy was excited to be able to use the computer and quickly amassed literally hundreds of facts/pictures from the Internet and other sources. His problem was in how to translate this into a paper. In talking with his father, a salesman, we suggested that the father get out his computer and boot up his slide-maker program and set up a series of several slides, each with a title only. The first slide was “Egypt: A History” and had the child’s name, the next slide was “Egypt at the time of the pharaohs,” the next “Egypt at the time of Jesus,” the next “Egypt at the time of Mohammed,” and finally “Egypt today.” The boy then went back and filled in the bottom half of the slide with five or six relevant points/facts. The father and boy then turned this visual presentation into an outline and each of the slides became a paragraph of the paper, with each of the five or six bullet points becoming a sentence. Keep in mind that in our increasingly computer- and Internet-focused society, knowing computer skills can be a very handy thing as children get older and think about job choices. For children with Asperger’s in particular, the use of a laptop computer from very early on in school has considerable advantages. Often, cursive writing is a real struggle for children with Asperger’s, and the laptop offers a highly functional work-around. Laptop and keyboard skills also can provide access to other important technologies, for example, spell checking and so forth (if the parents and teachers wish it to). It is important for parents and teachers to understand that this can indeed be a reasonable accommodation. Depending on the circumstance, computers can be equipped with all kinds of supports, including spell check, text-to-speech voice synthesizers, and so forth. Organizational software and supports from places like like Kidspiration (https:// education.fcps.org/trt/kidspiration) can be a benefit. For more able students, it is very much worth having parents and teachers visit websites focused on the needs of children with other problems like learning disabilities (www.ldpride.net) or attention deficit disorder (ADD) (e.g.,www.addwarehouse. com) to look for new materials, software, and so forth. Keep in mind that, depending on the context, some of the lower tech approaches can be very helpful. There are some excellent books that discuss executive function and organizational issues and these are included in the reading list. Adaptive Skills and Generalization to “Real World” Settings The term adaptive skills applies to the application of concepts learned in school to “real-world” settings outside the classroom—e.g., math facts help you solve both math problems and also to pay for items at a grocery store. Generalization of skills across settings is often a very major challenge for students with ASDs of all ages and levels of functioning. These abilities are one of the major factors that determine ultimate independence and self-sufficiency. The goal for students with an ASD is to make the student as independent as possible. Unfortunately, the real world is unpredictable—a problem if you have a preference for sameness. Second, the real world is highly social—a problem if you have social vulnerabilities. Third, the real world is fast paced, with many demands and bits of information coming to you at a time. And, finally, if you



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tend to learn things in a very narrow kind of way, you will have significant problems generalizing skills. If, for example, you can use the toilet at home but not at school, that is a problem. Similarly, if you can solve complex math equations in your head but not order a cheeseburger in a fast-food restaurant, you’re in trouble. It is almost always the case that individuals with ASD exhibit lower—and often very much lower— levels of ability in real-world contexts than they exhibit in familiar and highly structured settings. Accordingly, it is critical that schools and parents specifically consider the issues of generalization and adaptive skills as part of the child’s program (see Box 3.4) BOX 3.4  TEACHING ADAPTIVE SKILLS

As with other skills, an explicit and focused approach is helpful. Try to use the child’s natural motivations as much as possible. Be explicit in teaching. Use routines/scripts, which can then be faded. Teach generalization (different materials/situations/contexts for same behavior). Use the same methods used in schools: • Visual schedules • Written materials • Photographs • Be consistent (gradually introduce variations). • Use natural environments (rewards and consequences) as much as possible.

• • • • •

Chapter 2 discusses some of the ways adaptive skills can be assessed. Particularly as students become older an explicit focus on such skills should be an important part of the educational program. Of course, much of the work on social skills and communication we’ve already discussed is concerned with translating abilities learned in the classroom into real-world settings. There are a number of approaches to teaching daily living, coping, and self-help skills as well. The reading list provides some helpful resources for parents and teachers (e.g. Odom et al., 2019).

Sensory

and

Motor Interventions

Sensory problems are very common in ASD and many programs have been designed to help address them. These are often provided by occupational therapists. As noted there is some (although relatively little) research support for the classic method developed by Jean Ayers and there is actually remarkably little support (past the level of anecdote) for other sensory interventions (we’ll talk more about these in Chapter 14). Barton, Reichow and colleagues (2015) summarize much of the work on this topic. On the other hand, there has been a growing body of work on the benefits of exercise. A number of studies have now shown significant physical and behavioral benefits of regular exercise. Both individual and group programs have been used; individual ones are probably somewhat easier to implement. In addition to reduced levels of problem behaviors, exercise has important health benefits, e.g., with regard to obesity and overall health.

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Mainstreaming

and the

Classroom Environment

Under the law, it is presumed that children with autism and related conditions should be mainstreamed as much as possible (but that is not necessary when it is not possible). With the growing sophistication of supports for both the child with an ASD and for typically developing peers, many children with ASDs can be supported for inclusive settings for much, if not most, of the day. Various terms are used for mainstream settings, including full inclusion and integration. Various possible models are available; for example, a special education integrated class might include some children who were typically developing. Usually, mainstream classes are structured around a traditional classroom model, while an integrated class also includes work individualized for specific students. Various scenarios are possible, including those where both a regular classroom teacher and special ed teacher work together in the same inclusive class. When considering inclusion of the child with an ASD in mainstream settings, parents and the school must take into account the needs of the child, the context of inclusion, the need for adult supervision, the expectations of peers, and so forth. Attention to activities used in the class, the structure and routine of the interaction, and the physical environment all contribute to successful social interaction. The teacher often needs support to learn techniques for inclusion and managing problem behaviors. Support staff such as teacher assistants and paraprofessionals benefit from training, with one of the goals being to help support the child in the environment through an emphasis on peer-mediated, rather than adult, intervention. Unfortunately, this is the group that often spends the most time with the child with special needs, but may have the least training! One of the great advantages of mainstream/integrated classes is the potential for fostering social skills. Most of the work that has taken place to date has centered on preschool children, although some work on older children has appeared as well. That being said, it is clear that simply putting the child with an ASD in the classroom is not, by itself, sufficient. Rather, the teacher and peers must be appropriately prepared if peers are to be helpful. An entire body of work has now emerged on strategies and procedures for teaching social skills in these contexts using typical peers and free play and other situations. Adult supervision is typically used to help initiate interaction and monitor ongoing activities. Peers can be very effective agents of change—if given the special license to do so. For older children, more complex and sophisticated strategies are needed. Even here, benefits can be shown from peer interaction and self-monitoring and self-assessment. The experience of having a peer with an ASD in a classroom can be a valuable one for peers. As might be expected, younger peers need more support and monitoring than older ones. Strategies for increasing interaction in a mainstream setting are varied. These include social scripts, for example, in teaching fantasy play (an area of great difficulty for many children on the autism spectrum). Teaching both response to social overtures and initiation is important. It is critical that the child with an ASD be able to both initiate and respond appropriately; the latter is much easier, of course.Video supports and even virtual reality can be used as effective adjuncts to the teacher. For example, the child can review the tape with their teacher, observe when things go wrong, discuss alternative responses, and so forth. Video feedback can be highly effective, given the visual learning style in autism. There is a growing body of work on this topic.



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Researchers have developed various models of inclusion. For less cognitively able children, the emphasis may be on skills relevant to community involvement. This may be reflected in initial classes with an emphasis on one-on-one teaching and later moving to small group and more inclusive classes, eventually with typically developing peers. Transitions to mainstream settings should be carefully planned and supervised. Unfortunately, school districts often attempt to mainstream children into what are, seemingly, the easiest settings to manage: gym, recess, and cafeteria. Unfortunately, given the lack of structure and reduced levels of adult supervision for children on the autism spectrum, these are usually the absolute worst situations to begin mainstreaming. They are the least supervised and also most likely settings for bullying to occur! A well-designed transition plan with a gradual increase in exposure of the child to the mainstream setting is valuable, with careful, thoughtful adjustment based on the response of the child. For preschool children, situations readily used for mainstream activities include story time and free play as well as snack or lunchtime. With appropriate support, recess can also be used. For older children, music and art and similar activities can be positive times. For the more cognitively able child, some mainstream academic classes may be appropriate (and easier than less structured activities). The greater complexity of middle schools and high schools presents significant challenges, although even here mainstreaming can be successful. Issues do arise for the child who has lower cognitive ability, and here there is a trade-off between potential exposure to normal peers and the need for more vocationally focused transitional activities. For example, in one case with which we are familiar, a very cognitively disabled teenager, who was not yet showering or using the toilet independently, was placed in a traditional American history class; whatever benefit came from being exposed to a discussion of the U.S. Constitution was probably greatly outweighed by a lack of attention to basic self-care skills. Box 3.5 lists some possible inclusion strategies. BOX 3.5  INCLUSION STRATEGIES TO SUPPORT INCLUSION

Peer-based interventions (e.g., peer modeling, buddy systems) Teaching play skills Facilitating engagement in social skills groups Providing visual activity schedule for classroom Teaching social scripts (and then fade scripts over time) Teaching self-management skills (initiation, staying on task, social routines) Supporting inclusion (encouraging peer response, teacher responds to child through peer, environment supports peer interaction) • Proactive Management of problem behaviors • Teaching about emotions and thinking about feelings in self and others

• • • • • • •

Adapted with permission from Handleman, J. S., Harris, S. L., & Martins, M. P. (2005). Helping children with autism enter the mainstream. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 1038, Table 40.1), Wiley.

It is important to consider the classroom environment as a setting for teaching. Children with ASDs can have difficulties with organization, selective attention, sensory issues, and so forth. A typical school classroom often provides a complex social and perceptual environment. So, for some children a b­ alanced

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approach with “pull-outs” and opportunities for more intensive work mixed with classroom and small group work is most useful. The classroom environment can help or hinder the child’s ability to attend, participate effectively, and learn. Thus, having continuity and a consistent approach is important. Having the team work together in a flexible and collaborative way is helpful in implementing the program and monitoring the IEP goals. The following are some of the things to think about in terms of classroom organization and design: • Organization of the room • Place materials/furniture to help organize the child (natural boundaries) • Look out for obvious distractions • Place desks so the child looks at the teacher, not outside • Place desk away from busy areas (like doorways) • Don’t have computer displays running where the child can see them • Have an area in the room with few distractions, where the child can “retreat” if need be • Respect visual learning style and difficulties with generalization/organization • Use colored tape to mark out specific areas, e.g., where the child sits • Use visual schedules/supports • Use organizational supports (preteaching, organizational software) • Attend to the social environment • Think about entrance/exit issues • Consider proximity issues The overall goal is to have the physical environment enhance social engagement and attention.

Students

with

Asperger’s

The challenges for students with higher cognitive abilities, particularly those with Asperger’s, are somewhat different than those for other students. Among teachers and school staff there may be a lack of awareness, or minimization, of the child’s level of social disability. Put another way, the very good language (but not communication) skills of the child with Asperger’s overshadow the awareness of the child’s vulnerability. Typically, this is reflected in comments like, “He is too bright to be in special ed” or “She is too verbal to be on the spectrum.” This is a bit like saying, “He’s too bright to have pneumonia” or “She is too verbal to have polio.” The communication goals for the child with Asperger’s may have a somewhat different focus than those of the child with higher cognitive functioning autism. For both groups, these usually will include work on social communication (pragmatics). Issues such as carrying on a conversation with a beginning, middle, and end are important, as are issues of topic sharing, reciprocity, humor and irony, expectations for turn taking, and building on what the other person just said. Building organizational and narrative skills are important. For the child with Asperger’s who is quite verbal (and sometimes inappropriately so), teaching self-monitoring and self-correction is important; even very rigid phrases like, “Am I talking too much?” or “Would you like to talk now?” can elicit helpful feedback. Video and audio feedback can be valuable ways to learn self-monitoring and monitor progress. Work on prosody (the musical aspects of speech) and voice volume can be helpful in this way as well.



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Students with Asperger’s

Learning prosody and the ability to modulate our voice in the context of setting is important and most of it is learned very early in life without any formal teaching at all (except perhaps to learn to be quieter in some settings like a church or synagogue and louder in playgrounds). Indeed, most of us have hundreds, if not thousands, of different voices we use for differentiable and/or different settings. For individuals with ASDs, who are verbal and who tend to be monotonic and loud, even having three voices is very helpful (soft, medium, and loud) as long as the individual knows which one goes where (soft for church, medium for class, loud for playground). Many of the strategies we have discussed apply to the student with Asperger’s but with some potentially important differences. Two of these things make life a bit easier for teachers: (1) Often, there is a strong motivation on the part of the student to “fit in,” and (2) better verbal abilities make it easier to teach explicit (verbal) strategies and rules for self-regulation and mastery of classroom routine. However, the one-sided social approaches may be off-putting to the typically developing students, so careful support and work with peers is important. Bullying (which we discuss in greater detail in Chapter 8) can start to be a problem, particularly as children become a bit older. For students with Asperger’s, another contributing factor to lack of recognition of the child’s difficulties is the relatively frequent variability of the child’s behavior across settings; for example, the child may seem engaged and enthusiastic in class, but the same child may literally be lost on the playground or the lunchroom. Often, behavior problems develop when the social difficulties are not attended to. These behavior problems can then lead to highly inappropriate labels; these vary from state to state, but terms like BD (behavior disturbed), ED (emotionally disturbed), or SEM (social–emotionally maladjusted) are used, and then the child is placed in a classroom with truly conduct disordered children— usually boys—and all hell usually breaks loose very quickly. We’re aware of one case where a very bright but quite socially limited first grader was put in a BD class for having talked back to his teacher (reminding her repeatedly that circle time was running late). He was in this BD class for no more than five minutes when a truly behavior-disturbed boy (who was very socially sophisticated) told him to “go pull the handle of that bright red box on the wall—a lot of stuff will happen,” and indeed it did. This kind of placement leads to the worst possible mismatch. The support of the communication specialist is often very helpful in dealing with communication issues that contribute to behavior problems. Behavior management procedures can be effective but should be informed by the child’s patterns of strengths and weakness and attempt, as much as possible, to help the child engage in self-monitoring/ self-management (see Box 3.6). BOX 3.6  STRATEGIES FOR STUDENTS WITH ASPERGER’S

Be explicit, explicit, explicit: Put expectaions/rules into words. Teach social roles. Assume nothing. Make things verbal: Teach narrative and observation skills. Help the child asks all the “Wh” questions: • Who?, What?, Where?, When?, and (at the end) Why? • Teach emotions and the language of emotions:

• • • • • • •

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Encourage self-awareness of feelings, problem situations. Teach about the experience of anxiety, depression, reactions to novelty. Teach explicit coping strategies: Include verbal self-talk and verbal coping. Encourage self-monitoring and invitations for feedback (“Am I talking too much?”). Teach alternative solutions when the child gets stuck. Have a “safe address” person the child can use—e.g., getting a pass to seek out this person for a quick check-in and then rapidly returning to the class.

Behavioral strategies for management of problem behaviors in more able individuals should be informed by an understanding of the child’s disability. What can seem like very inappropriate behaviors may be much better understood from the child’s point of view. An excessive tendency to follow the rules can lead to trouble; for example, the child may be quite insistent on a routine partly because they have learned to use it as a lifeline. The special interests often seen in students with Asperger’s and sometimes with other students on the autism spectrum can present some challenges for the student and teacher alike. Whenever possible and when appropriate it may be helpful to use the students’ natural interests/ motivations in a positive way. Sometimes the task is helping the student learn to contain an interest, for example, to have something to talk to other students about apart from rocks or dinosaurs; in these cases, giving the child the opportunity (for very discrete periods) to pursue their interest may be used as an incentive for other work.

Summary In this chapter, we have surveyed some of the various approaches to teaching particular skills and have discussed several interventions in different areas: curriculum issues, social skills, communication skills, daily life (adaptive) skills, and organizational issues. It is important for parents and educators to work together in developing individualized education plans that address the strengths and weaknesses of the particular child. Parents and families have a particularly important role in helping generalize skills across settings, that is, in helping the child learn to use what they learn in school in other contexts. While we wish there was more research on these various intervention methods, there is at least some, and fortunately there are more and more tools for parents and teachers to work with. It is particularly important to include a focus on real-world skills and generalization, given the learning style of individuals with autism and related disorders. Parents (and teachers) should not be misled by isolated areas of strength—when these are present, they can be important considerations in program development, but keep in mind that other areas need intensive work. Many different approaches to teaching have been developed with a number of model programs that now are evidence based. Keep in mind that schools can employ any one of these various models and any of the various evidence-based intervention methods. For purposes of monitoring the individual child, the IEP should be a helpful guide with a clear statement of targets for intervention, objectives, and ways to monitor progress. As we note, a number of school personnel can be useful allies for the primary care provider in advocating for the individual student.



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R EA D ING A N D R E F E R E N C E S

*indicates particularly relevant reading *Adreon, D., & Myles, B. S. (2001). Asperger syndrome and adolescence: Practical solutions for school success. Autism Asperger. Al-Ghani, K. I. (2009). The red beast: Controlling anger in children with Asperger’s syndrome. Jessica Kingsley. Anderson, S. R., Jablonski, A. L., Thomeer, M. L., & Knapp, V. M. (2007). Self-help skills for people with autism: A systematic teaching approach. Woodbine House. Ayres, A. J. (2005). Sensory integration and the child: Understanding hidden sensory challenges. Western Psychological Services. Baker, J. (2001). Social skills picture book: Teaching play, emotion, and communication to children with autism. Future Horizons. *Barbera, M. L., & Rasmussen, T. (2007). The verbal behavior approach: How to teach children with autism and related disorders. Jessica Kingsley. Barton, E. E., Reichow, B., Schnitz, A., Smith, I. C., & Sherlock, D. (2015, February). A systematic review of sensory-based treatments for children with disabilities [Systematic Review]. Research in Developmental Disabilities, 37, 64–80. https://doi.org/10.1016/j.ridd.2014.11.006 *Beukelman, D. R., & Mirenda, P. (2005). Augmentative and alternative communication: Supporting children and adults with complex communication needs (3rd ed.). Brookes. *Bondy, A., & Frost, L. (1998). The picture exchange communication system. Seminars in Speech and Language, 19(4), 373–388; quiz 389, 424. Buron, K. D., & Myles, B. S. (2004). When my autism gets too big! A relaxation book for children with autism spectrum disorders. Autism Asperger. Carter, M. A., & Santomauro, J. (2007). Pirates: An early-years group program for developing social understanding and social competence for children with autism spectrum disorders and related challenges. Autism Asperger. *Cohen, M. J., & Sloan, D. L. (2007). Visual supports for people with autism: A guide for parents and professionals. Woodbine House. Coulter, D. (2005). Manners for the real world: Basic social skills (DVD). Coulter Video. Dawson, P., & Guare, R. (2003). Executive skills in children and adolescents: A practical guide to assessment and intervention (The Guilford practical intervention in schools series). Guilford Press. Dawson, P., & Guare, R. (2009). Smart but scattered: The revolutionary “executive skills” approach to helping kids reach their potential. Guilford Press. Dawson, G., Rogers, S., Munson, J., Smith, M., Winter, J., Greenson, J., Donaldson, A., & Varley, J. (2010). Randomized, controlled trial of an intervention for toddlers with autism: The Early Start Denver Model. Pediatrics, 125(1), e17–23. https://ovidsp.ovid.com/ovidweb.cgi?T=JS&CSC=Y&NEWS=N&PAGE=fulltext&D= medl&AN=19948568 Delmolino, L., & Harris, S. L. (2004). Incentives for change: Motivating people with autism spectrum disorders to learn and gain independence. Woodbine House. *Dunlap, G., & Fox, L. (1996). Early intervention and serious problem behaviors: A comprehensive approach. In L. K. Koegel, R. L. Koegel, & G. Dunlap (Eds.), Positive behavioral support: Including people with difficult behavior in the community. Journal of Applied Behavioral Analyses, 20(2), 119–132 (pp. 31–50). Brookes. Dunn, M. A. (2005). SOS. Social skills in our schools: A social skills program for children with pervasive developmental disorders, including high-functioning autism and Asperger syndrome, and their typical peers. Autism Asperger. Fein, D., & Dunn, M. (2007). Autism in your classroom. Woodbine House. Fovel, J. T. (2002). The ABA program companion: Organizing quality programs for children with autism and PDD. DRL Books. Freeman, S., & Dake, L. (1997). Teach me language: A language manual for children with autism, Asperger’s syndrome, and related developmental disorders. SKF Books. *Gagnon, E. (2001). Power Cards: Using special interests to motivate children and youth with Asperger syndrome and autism. Autism Asperger. *Goldstein, H. (2002). Promoting social communication: Children with developmental disabilities from birth to adolescence. Brookes. Goldstein, H., Kaczmarek, L., Pennington, R., & Shafer, K. (1992). Peer-mediated intervention: attending to, commenting on, and acknowledging the behavior of preschoolers with autism. Journal of Applied Behavior Analysis, 25(2), 289–305.

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Gray, C. (1994). Comic strip conversations. Future Horizons. Gray, C. (2000). The new social story book: Illustrated edition (2nd ed.). Future Horizons. *Gray, C. A. (1998). Social stories and comic strip conversations with students with Asperger syndrome and highfunctioning autism. In E. Schopler & G. B. Mesibov (Eds.), Asperger syndrome or high-functioning autism? Current issues in autism (pp. 167–198). Plenum Press. Greenspan, S. I., & Wieder, S. (2009). Engaging autism: Using the floortime approach to help children relate, communicate, and think. Da Capo Lifelong Books. Guare, R., Dawson, P., & Guare, C. (2013). Smart but scattered teens. Guilford Press. Gutstein, S. E., & Sheely, R. K. (2002). Relationship development intervention with children, adolescents and adults. Jessica Kingsley. Handleman, J., Frogber, S., & Harris, S. L. (1994). Preschool education programs for children with autism. Pro-Ed. Handleman, J. S., Harris, S. L., & Martins, M. P. (2005). Helping children with autism enter the mainstream. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 1029–1042). Wiley. Harris, S., & Handleman, J. S. (2000). Preschool education programs for children with autism. Pro-Ed. Harris, S. L., Handleman, J. S., & Jennett, H. (2005). Models of educational intervention for students with autism: Home, center and school-based programming. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 1043–1054). Wiley. *Hodgdon, L. (2011). Visual strategies for improving communication: Practical supports for school and home. QuirkRoberts. Hodgdon, L. (2003). Solving behavior problems in autism: Improving communication with visual strategies. QuirkRoberts. Hume, K., & Odom, S. (2007). Effects of an individual work system on the independent functioning of students with autism. Journal of Autism and Developmental Disorders, 37(6), 1166–1180. Iovannone, R., Dunlap, G., Huber, H., & Kincaid, D. (2003). Effective educational practices for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 150–165. https://doi.org /10.1177%2F10883576030180030301 Kabot, S., & Reeve, C. (2014). Curriculum and program structure. In Autism spectrum disorder in children and adolescents: Evidence-based assessment and intervention in schools (pp. 195–218). American Psychological Association. http://doi.org/10.1037/14338-010 *Kasari. C., Gulsrud, A. C., shire S.Y., and Strawbridge, C. (2021) The JASPER Model for Children with Autism: Promoting Joint Attention, Symbolic Play, Engagement, and Regulation, Guilford *Keating-Velasco, J. L. (2007). A is for autism, F. is for friend: A kid’s book for making friends with a child who has autism. Autism Asperger. Koegel, R. L., & Koegel, L. K. (Eds.). (2006). Pivotal response treatments for autism: Communication, social, & academic development. Brookes. *Koegel, R. L, & Koegel, L. K. (2019). Pivotal response treatment for autism spectrum disorders. Brookes. Koegel, R. L., Koegel, L. K., Vernon, T. W., & Brookman-Frazee, L. I. (2010). Empirically supported pivotal response treatment for children with autism spectrum disorders. Evidence-based psychotherapies for children and adolescents (pp. 327– 344). Guilford Press. Koegel, R., O’Dell, M., & Koegel, L. (1987, June). A natural language teaching paradigm for non-verbal autistic children. Journal of Autism and Developmental Disorders, 17(2), 187–200. https://doi.org/10.1007/BF01495055 Kohler, F. W., Strain, P. S., & Goldstein, H. (2005). Learning experiences, an alternative program for preschoolers and parents: Peer-mediated interventions for young children with autism. In E. D. Hibbs & P. S. Jensen (Eds.), Psychosocial treatments for child and adolescent disorders: Empirically based strategies for clinical practice (2nd ed., pp. 659–687). American Psychological Association. Kranowitz, C. S. (1995). 101 activities for kids in tight spaces. St. Martin’s. Laski, K., Charlop, M., & Schreibman, L. (1988). Training parents to use the natural language paradigm to increase their autistic children’s speech. Journal of Applied Behavior Analysis, 21(4), 391–400. https://doi.org/10.1901/ jaba.1988.21-391 *Lovaas, O. I. (1981). Teaching developmentally disabled children: The me book. Pro-Ed. Lovaas, O. I. (1987). Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55(1), 3–9. https://doi.org/10.1037/0022-006X.55.1 Lovaas, O. I. (2003). Teaching individuals with developmental delays: Basic intervention techniques. Pro-Ed.



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Lovaas, O. I., & Smith, T. (1988). Intensive behavioral treatment for young autistic children. In B. B. Lahey & A. E. Kazdin (Eds.), Advances in clinical child psychology (Vol. 11, pp. 285–324). Plenum Press. McAfee, J. (2002). Navigating the social world. Future Horizons. McClannahan, L. E., & Krantz, P. J. (1999). Activity schedules for children with autism: Teaching independent behavior. Woodbine House. McClannahan, L. E., & Krantz, P. J. (2004). Teaching conversation to children with autism: Scripts and script fading. Topics in autism. (S. L. Harris, Series Ed.). Woodbine House. *McPartland, J., Klin, A., & Volkmar, F. R. (2014). Asperger syndrome: Assessing and treating high-functioning autism spectrum disorders. Guilford Press. Meltzer, L. (Ed). (2007). Executive function in education: From theory to practice. Guilford Press. Mesibov, G. B., & Shea, V. (2010). The TEACCH program in the era of evidence-based practice. Journal of Autism and Developmental Disorders, 40(5), 570–579. https://doi.org/10.1007/s10803-009-0901-6 Mesibov, G. B., Shea, V., & Schopler, E. (2004). The TEACCH approach to autism spectrum disorders. Springer. Mirenda, P. (2014). Augmentative and alternative communication. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed., Vol. 2, pp. 813–825). Wiley. Myles, B. S. (2013). Building social skills instruction for children with Asperger syndrome. In R. W. DuCharme & T. P. Guilotta (Eds.), Asperger syndrome: A guide for professionals and families (pp. 91–111). Springer Science + Business Media. Myles, B. S., & Southwick, J. (2005). Asperger syndrome and difficult moments: Practical solutions for tantrums, rage and meltdowns. Autism Asperger. Myles, B. S., Trautman, M. L., & Schelvan, R. L. (2004). The hidden curriculum: Practical solutions for understanding unstated rules in social situations. Autism Asperger. National Research Council. (2001). Educating children with autism. National Academies Press. Odom, S. L., Boyd, B. A., Hall, L. J., & Hume, K. A. (2014). Comprehensive treatment models for children and youth with autism spectrum disorders. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed., Vol. 2, pp. 770–787). Wiley. Odom, S. L., Duda, M. A., Kucharczyk, S., Cox, A. W., & Stabel, A. (2014). Applying an implementation science framework for adoption of a comprehensive program for high school students with autism spectrum disorder. Remedial and Special Education, 35(2), 123–132. https://doi.org/10.1177/0741932513519826 Odom, S. L., Morin, K., Savage, M., & Tomaszewski, B. (2019). Behavioral and Educational Interventions. In F. Volkmar (Ed.), Autism and the Pervasive Developmental DIsorders (3rd ed., pp. 176–190). Cambridge University Press. Olley, J. G. (2005). Curriculum and classroom structure. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 863–881). Wiley. Patrick, N. J. (2008). Social skills for teenagers and adults with Asperger syndrome: A practical guide to day-to-day life. Jessica Kingsley. *Paul, R., & Fahim, D. (2016). Let’s talk. Brookes. Paul, R., & Sutherland, D. (2005). Enhancing early language in children with autism spectrum disorders. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., Vol. 2, pp. 946–976). Wiley. Pepper, J., & Weitzman, E. (2004). It takes two to talk: A practical guide for parents of children with language delay. The Hanen Centre. Perske, R. (1988). Circles of friends: People with disabilities and their friends enrich the lives of one another. Abingdon Press. Plass, B. (2008a). Functional routines for adolescents & adults—Community. LinguiSystems. Plass, B. (2008b). Functional routines for adolescents & adults—Home. LinguiSystems. Plass, B. (2008c). Functional routines for adolescents & adults—Leisure & recreation. LinguiSystems. Plass, B. (2008d). Functional routines for adolescents & adults—Work. LinguiSystems. Potter, C., & Whittaker, C. (2001). Enabling communication in children with autism. Jessica Kingsley. Prizant, B. M., Wetherby, A. M., Rubin, E., M.S., Laurent, A. C., & Rydell, P. J. (2004). The SCERTS model: enhancing communication and socioemotional abilities of children with autism spectrum disorder. Brookes.

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Prizant, B. M, Wetherby, A. M., Rubin, E., M.S., Laurent, A. C., & Rydell, P. J. (2005). The SCERTS model: A comprehensive educational approach for children with autism spectrum disorders (2 Vols). Brookes. Quill, K. (1995). Teaching children with autism: Strategies to enhance communication and socialization. Delmar. *Quill, K. (2000). Do watch listen say: Social and communication intervention for children with autism. Brookes. Reichow, B., Barton, E. E., Volkmar, F. R., Paul, R., Rogers, S. J., & Pelphrey, K. A. (2014). Evidence-based psychosocial interventions for individuals with autism spectrum disorders. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed.,Vol. 2, pp. 969– 992). Wiley. Reichow, B., Steiner, A. M., & Volkmar, F. (2013). Cochrane review: Social skills groups for people aged 6 to 21 with autism spectrum disorders (ASD). Evidence-Based Child Health a Cochrane Review Journal, 8(2), 266–315. https://doi.org/10.1002/ebch.1903 Reichow, B., & Volkmar, F. R. (2011). Evidence-based practices in autism: Where we started. In Reichow, B., Doehring, P., Cicchetti, D., & Volkmar, F. (Eds.), Evidence-based practices and treatments for children with autism (pp. 3–24). Springer Science + Business Media. https://doi.org/10.1007/978-1-4419-6975-0_1 Rogers, S. J. (1998, June). Empirically supported comprehensive treatments for young children with autism. Journal of Clinical Child Psychology, 27(2), 168–179. *Rogers, S. J., & Dawson, G. (2010). Early Start Denver Model for young children with autism: Promoting language, learning, and engagement. Guilford Press. Rogers, S. J., Dawson, G., & Vismara, L. A. (2012). An early start for your child with autism: Using everyday activities to help kids connect, communicate, and learn. Guilford Press. Rogers, S. J., Estes, A., Lord, C., Vismara, L., Winter, J., Fitzpatrick, A., Guo, M., & Dawson, G. (2012). Effects of a brief Early Start Denver Model (ESDM)-based parent intervention on toddlers at risk for autism spectrum disorders: A randomized controlled trial. Journal of the American Academy of Child & Adolescent Psychiatry, 51(10), 1052–1065. http://doi.org/10.1016/j.jaac.2012.08 Rogers, S. J., & Vismara, L. (2014). Interventions for infants and toddlers at risk for autism spectrum disorder. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed., Vol. 2, pp. 739–769). Wiley. Rutter, M., & Bartak, L. (1973). Special educational treatment of autistic children: A comparative study. II. Followup findings and implications for services. Journal of Child Psychology & Psychiatry & Allied Disciplines, 14(4), 241–270. Sabin, E. (2006). The autism acceptance book: Being a friend to someone with autism. Watering Can Press. Sanders, R. S. (2002). Overcoming Asperger’s: Personal experience & insight. Armstrong Valley. Savner, J. L., & Myles, B. S. (2000). Making visual supports: Work in the home and community: Strategies for individuals with autism and Asperger syndrome. Autism Asperger. Schetter, P., & Lighthall, K. (2009). Homeschooling the child with autism. Jossey-Bass. Schlieder, M. (2007). With open arms: Creating school communities of support for kids with social challenges using circle of friends, extracurricular activities, and learning teams. Autism Asperger. *Schopler, E. (1997). Implementation of the TEACCH philosophy. In F. R. Volkmar, R. Paul, A. Klin, & D. Cohen (Eds.), Handbook of autism and pervasive developmental disorders (3rd ed., pp. 767–795). Wiley. *Schreibman, L. (2005). The science and fiction of autism. Harvard University Press. *Smith, T. (1996). Are other treatments effective? In C. Maurice, G. Green, & S. Luce (Eds.), Behavioral intervention for young children with autism: A manual for parents and professionals (pp. 45–59). Pro-Ed. Smith, T., Buch, G. A., & Gamby, T. E. (2000). Parent-directed, intensive early intervention for children with pervasive developmental disorder. Research in Developmental Disabilities, 21(4), 297–309. https://doi.org/10.1016/ s0891-4222(00)00043-3 Steinbrenner, J. R., Hume, K., Odom, S. L., Morin, K. L., Nowell, S. W., Tomaszewski, B., Szendrey, S., McIntyre, N. S., Yücesoy-Özkan, S., & Savage, M. N. (2020). Evidence-based practices for children, youth, and young adults with autism. The University of North Carolina at Chapel Hill, Frank PorterGraham Child Development Institute, National Clearinghouse on Autism Evidence and Practice Review Team. https://ncaep.fpg.unc.edu Stewart, K. (2002). Helping a child with nonverbal learning disorder or Asperger’s syndrome: A parent’s guide. New Harbinger.



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READING AND REFERENCES

Strain, P. S., & Bovey, E. H., II. (2011). Randomized, controlled trial of the LEAP model of early intervention for young children with autism spectrum disorders [Empirical Study; Quantitative Study; Treatment Outcome]. Topics in Early Childhood Special Education, 31(3), 133–154. http://doi.org/10.1177/0271121411408740 Strain, P. S., & Cordisco, L. (1994). LEAP preschool. In J. S. Handleman & S. L. Harris (Eds.), Preschool education programs for children with autism (2nd ed., pp. 225–244). Pro-Ed. *Sussman, F. (1999). More than words; Helping parents promote communication and social skills in children with autism spectrum disorder. The Hanen Centre. Tager-Flusberg, H., Paul, R., & Lord, C. (2014). Language and communication in autism. In F. R. Volkmar, S. J. Rogers, R. Paul, & K. A. Pelphrey (Eds.), Handbook of autism and pervasive developmental disorders (4th ed., Vol. 1, pp. 335–364). Wiley. Voos, A. C., Pelphrey, K. A., Tirrell, J., Bolling, D. Z., Vander Wyk, B., Kaiser, M. D., McPartland, J. C., Volkmar, F. R., & Ventola, P. (2013). Neural mechanisms of improvements in social motivation after pivotal response treatment: Two case studies. Journal of Autism & Developmental Disorders, 43(1), 1–10. https://doi. org/10.1007/s10803-012-1683Walton, K. M., & Ingersoll, B. R. (2013). Improving social skills in adolescents and adults with autism and severe to profound intellectual disability: A review of the literature. Journal of Autism and Developmental Disorders, 43(3), 594–615. http://doi.org/10.1007/s10803-012-1601-1 Watkins, L., Ledbetter-Cho, K., O’Reilly, M., Barnard-Brak, L., & Garcia Grau, P. (2019). Interventions for students with autism in inclusive settings: A best-evidence synthesis and meta-analysis. Psychological Bulletin, 145(5), 490–507. https://doi.org/10.1037/bul0000190 Wheeler, M. (2007). Toilet training for individuals with autism or other developmental issues (2nd ed.). Future Horizons. White, S. W., Koenig, K., & Scahill, L. (2007). Social skills development in children with autism spectrum disorders: A review of the intervention research. Journal of Autism and Developmental Disorders, 37, 1858–1868. White, S. W., Smith, I. C., Miyazaki, Y., Conner, C. M., Elias, R., & Capriola-Hall, N. N. (2019, October 14). Improving transition to adulthood for students with autism: A randomized controlled trial of STEPS. Journal of Clinical Child & Adolescent Psychology, 1–15. https://doi.org/10.1080/15374416.2019.1669157 Wrobel, M. (2003). Taking care of myself: A hygiene, puberty and personal curriculum for young people with autism. ­Future Horizons. Zeedyk, M. S. (2008). Promoting social interaction for individuals with communication impairments: Making contact. ­Jessica Kingsley.

CHAPTER

4

Securing Services

I

n this chapter we provide information on getting services for a child with an autism spectrum diagnosis. This chapter includes a discussion of legal entitlements and some of the key concepts relative to rights to educational services.This information is most relevant to parents who live in the United States, although it may be of interest to those in other countries where other sets of laws and entitlements will apply. It is important that parents and teachers have some basic understanding of these rights. In the next series of chapters we’ll talk about overall approaches to programming and then to more age-specific issues for infants and young children, school-aged children, and adolescents and adults. Keep in mind that, as in other areas, parents and parent support groups may be good sources of information. Also keep in mind that things can change—either through changes in the laws (by Congress or state legislatures) or new judicial decisions (by the courts) or sometimes by state or federal regulation—so it is important that everyone involved be aware of current requirements. We also will touch on the complex issues of services for adults with autism specrum disorders (ASDs) (Magiati & Howlin, 2019) but talk more about this in Chapter 7.

The Individuals

with

Disabilities Education Act (IDEA)

As we mentioned, this chapter is primarily concerned with the United States. Laws in other countries will differ, as do options for services. A bit of historical perspective is important. Before 1975, only a small number, maybe around 20%, of children with disabilities received an education within public schools in the United States. Keep in mind the diagnosis of autism at that time focused on “classic” Kanner’s autism (Kanner, 1943) and there was little awareness of autism and the broader “spectrum.” It was common for parents to be told that schools “can’t educate a child like this” and parents were frequently told to put their children in institutions. In these places there was little proactive programming. Such placements helped them learn to live in (i.e., remain in) institutions, and outcome was often poor. There were, of course, exceptions but these usually were situations where parents wouldn’t accept a lack of services and advocated for, or sometimes started, their own private schools or programs. Many of the earliest schools for children with autism in the United States were started this way, and some remain active to the present. 71

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This changed dramatically in 1975 when Congress passed the Education for All Handicapped Children Act (Public Law 94-142), which mandated school services for all children. This law has been revised and amended many times. The current version is called the Individuals with Disabilities Education Improvement Act of 2004, but is commonly referred to as the Individuals with Disabilities Education Act (IDEA). This law applies to several areas, including early education as well as schoolbased and transition services and mandates meeting the educational needs of children with disabilities from the time they are born until they reach 21 years of age. When IDEA was first passed in 1975 it marked a true sea change in school-related services for students with all kinds of learning and emotional difficulties, as it gave them an actual entitlement to an education. For children with ASDs this was particularly critical, given that early studies of educational intervention (e.g., Rutter & Bartak, 1973) had shown the importance of structured intervention in improving learning and longer-term outcome for these children. Although the IDEA is thought of as a civil rights law, it technically does not require states to participate; rather, it gives them incentives to do so by funding programs when states meet certain requirements. All states now participate. See Box 4.1 for key concepts and terms. It is important to understand what the law does and doesn’t require. There are some key concepts that we will review shortly. Also, it is important to realize that the age of the child has some relevance here. For example, after age 21 the IDEA does not apply, but other laws, such as the Americans with Disabilities Act (ADA), may apply, e.g., in college or vocational school or jobs. The requirements for early intervention (before age 3) programs are different from those of public schools, and some of the terms and concepts will vary depending on the age of the child; some aspects vary a bit from state to state. Also keep in mind that a vast number of children, over 7 million in 2018 (about 14% of the school age population) were educated under the provisions of this law. This number includes children with a range of disabilities, not just autism. Autism is, however, mentioned specifically in IDEA as

BOX 4.1  KEY CONCEPTS AND TERMS RELATED TO SCHOOL SERVICES IN THE UNITED STATES

IDEA PL-94-142 PL-108-446 FAPE IEP LEA LRE ADA 504 Plan IFSP Inclusion

The Individuals with Disabilities Education Act—an act of Congress giving specific rights to children with disabilities for educational services. Public Law 94-142—the original (1975) law passed by Congress mandating school services to children with disabilities. The Individuals with Disabilities Education Improvement Act of 2004 Free and appropriate public education Individualized education plan Local Education Authority (the local school district) Least restrictive environment Americans with Disabilities Act A plan developed to accommodate the special needs of a child with a handicap. It is less commonly used in autism than the IEP. Individualized family service plan—a plan similar to the IEP but for younger children (under age 3). Having children with ASD in classes/settings where there are typically developing peers (also referred to as mainstreaming); this can be full or part time and with or without the support of an aid or teacher.



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The Mandate for Identification

one of the conditions that meet the requirement for disability. This is an area where diagnostic labels are very important. The intent of the law is to identify children whose disabilities interfere with their learning.Thus, even if a child with autism has normal cognitive ability, they can still qualify for services. The reading list at the end of this chapter provides information on a number of resources that can be helpful in understanding this law and how it works. Be aware, however, that in the legal arena, changes can happen at any time—these changes can come from changes in the statute (the underlying law), from court decisions (which interpret the law), from regulations and guidance adopted by the state and federal education agencies to implement the law, and by the passage of other federal and state laws. An example is the No Child Left Behind Act of 2001. Changes can also occur even because of local issues that impact school services programs. For example, a gifted director of special educational services in a district can retire or be replaced, and sometimes, literally overnight, there can be a dramatic shift in the quality and nature of programs. We provide a brief and selective overview here. If parents have trouble securing services, a parent advocate or lawyer may be needed. This chapter is as accurate as we could make it at the time of publication; however, it is not a substitute for the advice of a lawyer. Parents should consult with an attorney (or other advocate) who has experience in the area (Mayerson, 2014). Some states may have additional provisions about regulation of special education services. A few states now have statewide autism programs. In general, federal statutes usually supersede state laws and regulations (called preemption). However, a state or local education agency may choose to provide even more services or more protections than are guaranteed by the federal statute. Table 4.1 summarizes some of the key issues in the history of the IDEA.

The Mandate

for Identification

The states are required to locate and evaluate children with disabilities who may need special services. This is known as the “child find” obligation. Children can be identified and referred for evaluation by parents or by health care providers (usual for autism), as well as by school personnel. The “child find” requirement—to identify and evaluate—applies to all children, including children attending private schools and children who are homeless or migrant. Special provisions are made for children under age 3. Once a child has been identified, the local school district (called the Local Educational Authority, or LEA in legal speak) must determine whether the child is eligible for services under IDEA. Parents of children under the age of 18 are asked to give their consent for an evaluation. In situations where a court has determined that a student who is over the age of 18 is incapacitated, the student will not be able to give consent. Consent must be granted by the parents or guardian in those circumstances. The evaluation should be sufficiently detailed as to provide a determination of whether the child does or does not meet the eligibility requirement of having a disability such that the child requires special education and/ or related services in order to benefit from their education. Given the many different manifestations of autism and related conditions, multiple disciplines and evaluations are frequently involved to be able to provide a comprehensive assessment. For example, many children on the autism spectrum require speech and language evaluations as well as psychoeducational evaluations and occupational therapy assessments. The purpose of the assessment is both to establish whether or not the child is entitled to services and to assist the team in planning the educational program (individualized education plan [IEP]) that will provide and direct the services.

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TA B LE 4. 1   T H E H I STO RY A N D E V O LU T I O N O F T H E I D E A .

Legislative History 1975: The Education for All Handicapped Children Act (PL 94-142) mandates the right to education for all children with disabilities. 1990: The law is renamed the Individuals with Disabilities Education Act (IDEA). 1997: IDEA was amended in several ways including provision of coverage to delayed children between ages 3 and 9 years of age, and the use of mediation to resolve disputes was encouraged. 2004: The Individuals with Disabilities Education Improvement Act of 2004 (IDEIA) modified the law to conform with No Child Left Behind and also dealt with disciplinary issues for students in special education and mandated school districts to prepare students for further education, employment and independent living. Supreme Court Decisions A series of decisions by the Supreme Court have relevance: Hendrick Hudson Central School District v. Rowley (1982): This case clarified that the standard was of an adequate, not optimal, special education program. Schaffer v. Weast (2005): It was held that the “moving” party (usually the parent) in a placement challenge had the burden of persuasion. However, states may shift that burden, as long as it is provided by statute or regulation. For example, in 2008, legislation was passed in New Jersey (N.J.S.A. 18A:46-1.1) placing the burden of proof on the school district in all requests for a due process hearing, whether filed by the parents or the school district. Winkelman v. Parma City School District (2007): The Court found that, under IDEA, parents have independent enforceable rights that include the entitlement to a free appropriate public education for their child and can bring action (with or without a lawyer or representing themselves) to enforce their own rights, which are the same as their child’s rights. Arlington Central School District v. Murphy (2006): Parents who prevail in legal action can be awarded “reasonable attorney fees” by the court but cannot recover fees for expert witnesses. Endrew F. v. Douglas City School District (2017): The Supreme Court found that the proper standard for an appropriate education is one that is “reasonably calculated to enable a child to make progress appropriate in light of the child’s circumstances.” Appropriate progress must be more than the minimal progress suggested by the lower court.

Parents can, of course, submit their own evaluations. The school district must take their evaluation into consideration, but is not required to accept such evaluations or to follow their recommendations. It also is not required to pay for them (although it can agree in advance to do so). If the parents disagree with the evaluation provided by the school, they can also request an independent evaluation. If parents are careful to document that they disagree with the school’s assessment, the school has to either pay for the independent evaluation or request a hearing (often called due process) to defend the district’s evaluation and to show that an independent evaluation is not needed. When would a parent want to ask for an independent evaluation? There are several situations when this would make sense. If a school district does not identify a child as having a disability and the parent disagrees, an independent evaluation can be helpful. In other cases, sometimes the district identifies the child as disabled, but does not offer services because their evaluation does not show that the disability interferes with the child’s ability to benefit from education. A review (usually repeat testing) at least every 3 years (triennial review) is required by the school with additional testing as needed to show continued need for services. Sometimes the school will pay for an independent evaluation at this point. In some circumstances, school districts may agree to evaluate prior to the triennial date, particularly in cases with a significant change of circumstances.



Free

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Eligibility for Services

and

Appropriate Public Education

One of the core key concepts of IDEA is that students must be provided with a free and appropriate public education (FAPE). Note the words free and appropriate.The meaning of free is clear: that parents do not have to pay. However, the question of what is appropriate for a particular child is one that often turns into a sticking point. Parents, understandably, want the best for their child. The law, however, uses the word appropriate, not best. Put another way, as set out by the United States Supreme Court in the case of Board of Education of the Hendrick Hudson Central School District v. Rowley, a school district satisfies its duty by providing an “adequate” education. In that case, Amy Rowley, a hearing-impaired child, was able to advance from grade to grade without the benefit of the requested sign language interpreter.The Supreme Court stated that the law required “personalized instruction and related services calculated… to meet [a child’s] educational need.” The Court added that, because in this case they were presented with a handicapped child who was receiving substantial specialized instruction and related services, and who was performing above average in the regular classrooms of a public school system, they confined their analysis to that situation. Unfortunately, later court decisions and hearing officer decisions have frequently ignored the Court’s limitation of Rowley (that is, a situation where the child was performing above the average) and the Rowley case has limited the services required by the IDEA to be minimally adequate. This issue remains an important one and a source of frequent disputes between parents and schools. As a practical matter, there also are considerable regional variations in how services are provided and what services are available. This can be very dramatic across states and sometimes even within states. In our particular state, for example, variations from town to town can be quite dramatic and sometimes moving across the street can result in a major change for the better (or worse) in terms of a quality program. This wide variability in programming across the states has been the focus of some research (see Doehring & Becker-Conttrill, 2013). We’ve seen families who moved from other countries to the United States to get services and have had to tell them they may want to think about moving to a specific location to get the services their child really needs.

Eligibility

for

Services

The IDEA includes a very specific list of covered disabilities, including autism as well as intellectual disability (mental retardation), speech–language impairment, visual impairment, and hearing impairment. In addition, the law requires that the child must, as a result of their condition, require special education services. In other words, simply having a disability or a diagnosis alone does not make a child eligible for special education and related services. So if a hearing-impaired child, for example, could be helped with a hearing aid so that their disability was not interfering with their ability to learn, they would not necessarily qualify for services under IDEA unless some other condition that interfered with educational progress was present. However, in this situation there might be specific state mandates that apply, i.e., relative to resources for a deaf or hearing-impaired child. We want to stress several additional points: It is very important to keep in mind that educational progress is not limited to academic progress. The term special education is much broader than book

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learning. It is, under the law, “specially designed instruction, at no cost to parents, to meet the unique needs of a child with a disability.” This includes: • Instruction in the classroom and also in other settings • Instruction in physical education • Transition services designed to help the child move from school to employment, vocational school or other setting • Services based on the individual child’s needs that take the child’s strengths, preferences, and interests into account • Instruction-related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation This is a broad definition of education, well beyond academic subjects, and covers areas of critical importance for children with autism spectrum disorders (ASDs). Transition services must be available, and usually are delivered, as a child is starting to complete high school. However, there is no bar to including transition goals and services before the high school years. Even if a student doesn’t technically qualify under IDEA, there are other federal laws, notably the Americans with Disabilities Act (ADA) and section 504 of the Rehabilitation Act of 1973, which may apply, and the child may qualify for some accommodations or services under these laws. Both of these laws prohibit discrimination based on a person’s disability, and require equal access to services. The ADA applies to public accommodations and governmental services, and the Rehabilitation Act to recipients of federal funds. Thus, it is likely that almost every public school system would fall under both acts. Both laws require that entities make reasonable accommodations, which are modifications to their policies and procedures that are required to permit a person with a disability to access the services or benefits provided. This applies in schools and means that even if it is determined that a child with a disability does not need special education in order to make progress in school, if they need modifications to receive equal access, it must be provided. Examples of modifications are additional time to complete tests and assessments, modified curriculum, special transportation, preferential seating, or being permitted to enter and leave classes early to avoid the difficulties of the crowds and disorder of the halls between classes. One important difference about accommodations under these acts from special education mandated under IDEA is that reasonable accommodations must be requested by the student or their parents—there is no requirement to seek out eligible students and offer such accommodations. It is important to note that it is not uncommon for districts to offer a 504 plan in cases where an IEP might better be warranted. The effect can be significant since 504 does not provide the procedural safeguards and rights available under IDEA. The recent changes in the diagnosis of autism (APA, 2013) have led to some challenges, given what seems like restricted diagnostic coverage for some students, particularly those with Asperger’s or who are part of the broader autism spectrum (McPartland et al., 2012; Smith et al., 2015). This new system “grandfathered in” students with “well-established” diagnoses of Asperger’s or pervasive development disorder not otherwise specified (PDD-NOS), but students who have these conditions and are just coming to diagnosis may not technically qualify for an ASD label in DSM 5 (APA, 2013). Fortunately, schools have a range of options in choosing terms and they can, for IEP purposes, provide services through a



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Individualized Education Plan (IEP)

label such as “other health impaired.” For students on the autism spectrum often these are students who are more cognitively able and may need less support but can benefit from a 504 plan under the ADA. For young children, the possibility of a “developmental delay” category can be used by schools for children between 3 and 6 years of age (this varies from state to state) so that children with developmental delays do not have to have a specific disability label. As a result of the emphasis on autism, there is often pressure to have children on the autism spectrum (more broadly defined) included within the autism category. Practices vary considerably from state to state and sometimes within states. It is also possible for children with ASDs to qualify under different categories, for example, speech and language impairment, intellectual delay, or even “other health impaired.” In theory, the emphasis should be on the child’s needs and not the child’s label, but in reality the label is often important and may qualify children for additional services outside of the educational realm.

Individualized Education Plan (IEP) The IDEA requires schools to create an individualized education plan (IEP) for any child who is eligible for special education. This is required for any student who qualifies and is the most important element of the student’s intervention program. This document is developed by parents and teachers and others (an “interdisciplinary team”) using the information gathered by all of them and any evaluation results as discussed in the planning meeting. The IEP document will be the guide for the school program and should set out exactly what kinds of services are to be provided, including the number of hours of each service, how much of that service will be provided in a setting with typically developing peers (inclusion), and what special arrangements or accommodations are made for the student. It should also include measurable goals and objectives (the term goals now includes the concept of objectives). We will discuss the IEP in much greater detail shortly. There are several excellent guides listed in the reading list at the end of this chapter. The IEP is an individualized plan—a blueprint. The child should not be pigeonholed into whatever autism classroom the school or district has. Rather, the IEP should reflect the unique needs of the child. In theory, the IEP will include both shorter and longer-term goals. Short-term objectives should be developed without regard to what is available in the district’s existing programs. Making goals measurable is truly important. Seeing goals and objectives that are simply carried over from year to year is an immediate “red flag” that something isn’t right! Parents should understand that the IEP is developed by the interdisciplinary team (called by different names in different states, i.e., planning and placement team [PPT], committee on special education team, or in many states simply IEP team), which includes mainstream and special education teachers, specialists (i.e., school psychologist, social worker, speech–language pathologist, behavior analyst) and parents in a process that aims to achieve a consensus. The IEP is not something you vote on like in a committee meeting. Parents can disagree with it and refuse to sign. The law requires that parents (and teenagers) be invited to all formal meetings and be able to participate in a meaningful way. However, if there is a guardianship in place, the extent of the student’s participation is determined by the parent or the guardian. It should be noted that parents whose children are under guardianship may still elect to have their child participate in IEP meetings. It is also important to realize that the IEP can include provisions for extending the school day or school year if that is necessary for the child, particularly to

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prevent loss of skills (regression). The IEP also can include transition services even beyond high school graduation until the age of 21 (in many states, until the end of the school year in which a child turns 21). The primary care provider can also be invited to attend—this may be particularly important in terms of children with chronic medical conditions; in these situations having the school nurse involved is also a good idea. Parents are also free to bring advocates to the meeting. This could be a friend, another parent, an attorney, or professionals (physicians/psychologists). The IEP is not limited to speech–language services, occupational therapy, physical therapy, psychological services, counseling, and assistive technology. School health services as well as social work services in school are also covered, as are transportation services. Any accommodations or modifications the child needs to benefit from the program should be spelled out; this includes any accommodations for standardized district or state tests. The IEP is a written document, and parents should always have a copy. Academic goals should be reasonable relative to levels of cognitive ability. It is important that parents and teachers not be misled by the sometimes isolated special abilities seen in children with ASDs; some children may be able to read to “decode” but their understanding of what they read may be quite poor. Social skills should be explicitly targeted. This can be done in a variety of ways through individualized small groups and classroom work, both within and outside the classroom and through use of special supports like individual or small group work. Good curricula are now available, for example with a speech pathologist or psychologist, or in a social skills group, or both. If properly supported, opportunities for mainstreaming can be very helpful. A common mistake is to mainstream older school-aged children into the least supervised settings where they are most vulnerable, such as cafeteria, recess, or gym; these can be some of the worst settings for children on the spectrum because of the lower level of structure and lack of adult support and monitoring. These are frequent areas where bullying occurs. Communication needs to be encouraged, starting at whatever level the child is functioning at. Some individuals with Asperger’s syndrome and higher functioning autism have much better vocabulary abilities that may mislead school staff into thinking the child does not need to work with the speech pathologist. In fact, it is communication and not just vocabulary work that these children need. Daily living skills become increasingly important determinants of self-sufficiency and independence as the child gets older. Sometimes an extended-day program is necessary and appropriate to work on these skills, e.g., after regular classes are finished. Motor and sensory issues can be addressed with the help of occupational and physical therapists. Consideration can be given to providing additional supports, for example, assistive technology, such as computers, for children with motor coordination issues. Behavior issues/challenges need to be viewed in the context of the overall goals of the program and the safety of the child and classmates. This is an area where the efforts of behavioral psychologists can be extremely helpful and where objective data can really be helpful in informing the intervention plan. If there are major issues or problems, it is important that the school know about them. For example, if the child has seizures, is allergic to a food, or is receiving medications that impact behavior, it is important that school staff be adequately informed and the staff prepared to deal with emergencies. Appropriate accommodations can be made for medical problems, e.g., children with ASDs who have seizures should never be left unsupervised near school/gym pools.



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How Can Parents Be Most Effective at the IEP Meeting?

Given that often many different people and specialties are involved in the child’s life at school, it is good to specifically address issues of coordination of services and communication between service providers. How (and how often) will the team pass information back and forth to each other? How will they communicate with parents? Who will be the point person in talking with the parents? Who should parents primarily communicate with? When parents are appropriately involved and knowledgeable, the system can work well to help the child learn to generalize their knowledge from school to home and other settings. The IEP should be a plan for action with a reasonable presentation of the child’s various abilities. Based on these strengths and areas of need, there should be an explicit statement of goals for the child’s educational program—along with short-term goals and benchmarks for reaching those goals. The IEP should be explicit about what services will be provided, including how frequent these are and their form and duration (e.g., 30 minutes of individual speech–language work with the school speech pathologist twice a week and one 30-minute group of three to four students and the speech pathologist session each week for social skills training). The goals should be operationalized in some way, that is, so you will know when the goals have been met. The law requires measurable goals, and therefore the IEP should set out how progress will be measured. This can be done in a number of different ways, but it is important that the IEP be explicit about how this is to be done. The degree to which mainstream activities are planned should also be made clear and what plans are in place (if needed) to help the student to be successful in mainstream settings. The IEP usually states the amount of time spent with typically developing peers. Several excellent books/resources available to guide parents are listed in the reading list at the end of this chapter. Regardless of whether the evaluations are done as part of the IEP process (i.e., by the school) or parents have independent evaluations, it is important that the evaluator understand the question(s) being asked. For example, is this an assessment primarily focused on diagnosis and eligibility, or is the main goal to establish patterns of strength and weakness and to make program recommendations, or primarily to monitor progress? Independent evaluations are most often needed in situations where parents and schools see a child and their needs so differently that they cannot agree on an appropriate program. The evaluation should translate into goals that will move the child along the developmental line toward as independent an adulthood as possible and objectives that can be measured in order to monitor the child’s progress toward the goals. Goals should cover academic and nonacademic areas.

How Can Parents Be Most Effective

at the

IEP Meeting?

There are some things parents can do to be effective participants in the IEP process. First, they can bring (or even better, supply ahead of time) any reports or documents relevant to the meeting, e.g., reports from a private speech pathologist or documentation that the child has a need for occupational or physical therapy. Sometimes a “pre-IEP” meeting is helpful to review results of assessment or discuss preliminary plans. This can give parents an opportunity to digest the reports and discuss them with each other and any outside professionals before the planning meeting takes place. Parents can always bring someone to the meeting—this can be the other parent, an advocate, a professional, or an attorney. It should be noted that if parents elect to have their attorney at the IEP meeting, they should notify the

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school district ahead of time in order to give the school district an opportunity to bring their counsel. Failure to do so may cause the meeting to be adjourned to another date. If appropriate, the child can also be part of the meeting. Parents can keep their own notes of the meeting and should remember to always have everything put down on paper—a verbal promise without written documentation won’t work so well as a written promise. After the IEP meeting, the parents should receive a copy of the IEP and any documentation from the meeting. When it arrives, parents should read it carefully and submit additions or corrections, if there are any, in writing. Parents should try to participate actively in the meeting—they are the people who know the child best and who are in the best position to speak for them. Again, keep in mind that the legal standard is appropriate education, not the best. Also keep in mind that the school is not required to provide the specific method of instruction that you chose; for example, they do not have to provide only applied behavior analysis (ABA)-based instruction. It is the school’s responsibility to be sure that parents understand the range of programs and services potentially available. This may include private schools or even residential programs. The fact, by itself, that the school has, for example, an “autism classroom” does not mean that this will always be the right placement for a child with autism. Consistent with the law, the goal should be the least restrictive placement possible, and restrictiveness is measured by time spent with typically developing peers.Therefore, private schools and particularly residential programs are often tried only after other placements have not worked out. However, there is no requirement that placements be tried in a sequential fashion. For instance, if appropriate, a child can go directly from a less restrictive placement such as a public school classroom to a more restrictive specialized placement such as residential placement. Buddha supposedly once said that if we lived long enough and stayed in one place, we’d see everything; there is undoubtedly much to this. For example, the child can have a wonderful IEP, but if the school doesn’t follow it, this won’t be much help. On rare occasions, we’ve been surprised that the IEP was pretty poorly done but the school program was very good.We’ve also seen occasions where, in the attempt to capture every possible issue, the IEP was over 100 single-spaced pages long. In this case, the attempt to get everything right on the part of a well-meaning parent resulted in a document that was too complicated to be useful.

Special Education

and

Related Services

IDEA encompasses both special education and “related services.” The latter includes the range of other interventions designed to meet the child’s needs and enable them to participate in and benefit from special education. This can include speech and language therapy, occupational and physical therapy, or the services of a psychologist or an aide or paraprofessional. Assistive technology is included, and transportation also falls into this category, for example, a special bus to and from school. Most medical services are specifically excluded. We’ll talk briefly about insurance coverage of medical issues at the end of this chapter.

Least Restrictive Environment (LRE) Keep in mind that PL 94-142 was passed at a time when there was great interest in civil rights for minority groups including individuals with special needs. Some of the terms (“integrated” or “segregated”) carry some of the broader context of the time the law was passed.



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Participation in Decision Making and Legal Protections

The law mandates that children be educated in the least restrictive environment appropriate to the child’s learning. The intent of the law is for children to be educated in settings that are normative, that is, where they are with typically developing, nondisabled peers. There is a body of work on how to do this in autism and particularly in young children with autism (Kohler & Strain, 1999; Martins et al., 2014). As children become older this can be a more complicated problem. Some schools will insist that they appropriately include everyone throughout high school; this can sometimes result in unfortunate situations. For example, we’ve seen a 16-year-old nonverbal and cognitively impaired child with autism included in mainstream high school classes even at a time when they were not able to shower independently much less understand the material presented. Clearly, the student should have been provided with relevant self-care instruction and with classes looking at their potential for adult activities and functioning in the community at as high a level as possible. As you might expect, the issue of inclusion and special school (i.e., “segregated”) settings has been the focus of much litigation, and in many states the standard is now twofold: (1) whether the child can be adequately educated in the general classroom setting if additional services are provided, and (2) if the child is in a more restricted setting, whether they can be integrated into mainstream settings to the maximum extent appropriate. The right not to be segregated is considered a civil rights issue, although a rebuttable one (i.e., you can show it is not appropriate for the individual child). Further, some parents believe that their children will receive better or more appropriate services in separate specialized settings where staff often have more experience and resources. In helping parents think about choices regarding appropriateness of inclusion experiences, parents should consider the benefits to the student of being in a regular classroom with support versus a self-contained special education classroom or other more segregated/specialized classroom. A child cannot be placed in an inappropriate setting just because it is less costly or because it is the only option available within the district.

Participation

in

Decision Making

and

Legal Protections

Families are specifically included in the decision-making process under IDEA. Parents and, to the extent possible, students should participate in meaningful ways in decision making. Parents have an important role in the entire process, and a series of safeguards are in place to protect their rights and those of the child. Primary care providers can also participate, and should do so, especially in complex situations. In reality, of course, many different things can impact parents’ abilities to be strong advocates. For example, their levels of sophistication, language barriers, and other competing concerns. Protections written into the law include the right of parents to review and receive copies of records, to attend IEP meetings, to participate in decision making, and to consent (or not) to the proposed program (IEP). There are specific requirements about notification of meetings, rights to request independent evaluations, and the right of parents to be given notice and explanation of their rights. There is also a procedure to resolve disputes between parents and schools that is designed both to promote agreement among the parties and to protect the rights of the student. These dispute resolution mechanisms are mediation or what are called due process hearings. Due process is what the United States Constitution requires before depriving anyone of life, liberty, or property. By calling the special education appeal hearing due process, Congress was emphasizing the importance of the right to an education and of the process used to develop the plan. The courts consider adherence to these rights to due process as important as the

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BOX 4.2  RIGHTS AND SAFEGUARDS UNDER IDEA

• Notice requirements: The school must give written notice to parents of proposed changes (e.g., in placement or program) and of the parents’ rights (e.g., to voice complaints or contest a planned change). • Consent of parents: Parents must give consent for an evaluation or reevaluation. Schools have the right to seek evaluations if parents don’t consent, but schools must then file and proceed with due process procedures or mediation. • Mediation: Rather than go through due process, parents and schools can use the more informal mediation process to resolve disputes. • Due process: Parents or the school can initiate a due process hearing to resolve disputes at any stage in the process (from evaluation, planning and placement, and review). Parents must be informed of their rights and the possibilities for free or low-cost legal representation. The due process hearing is similar to a regular court hearing but, in some respects, less formal. Parents and/or the school may be represented by attorneys. An entire appeals process is also available. • Stay put: The stay put provision means that if a child is in a program and there is a dispute about moving the child to another program this cannot be done until a placement decision is reached, that is the school cannot unilaterally remove a child from a program (parents, of course, can). Practically, this usually means that when a dispute is under way, the child stays where they are until the dispute is resolved.

content of the IEP and the nature of the educational program. The hope and expectation is that a fair and open process should produce an appropriate educational program. Some of these rights and safeguards are listed in Box 4.2. The parents must participate in the IEP meeting and planning process. It is possible for IEPs to be too short or way too long (as we noted, the record we’ve seen is over 100 pages). Too short means not enough detail in terms of an assessment and plan. Too long means that everyone is overwhelmed and can’t possibly keep the goals in mind. Goals and objectives should be outlined and measurable. Ways to document progress toward these goals should be provided so that if the child is not achieving them, another IEP meeting can be called to reset the plan. Parent advocates who have been through the process (sometimes with additional training) can be helpful to parents just beginning to cope with this. Some lawyers will have special training in this area as well.

Special Issues

for

Young Children

As we mention in Chapter 7, IDEA also provides a program to support early intervention services in children from birth to 3. These programs (sometimes called “birth to three” as well as “early intervention” services) provide a range of services. The law was intended to provide a very comprehensive program of services. In reality, the degree of sophistication and intensity of these services again varies considerably from state to state and even town to town (see Doehring & Becker-Conttrill, 2013) Some



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504 Plans and ADA

young children with autism may require, and may be entitled to and need, more intensive services than are typically provided. Young children also present special issues for “mainstreaming.” It is not so usual for children younger than age 3 to be in group (school) settings. Sometimes parents have arranged for a home-based instruction program that is more typical for young children and a number of intervention programs have a strong home-based component (National Research Council, 2001). A 1997 modification of the law included the term natural environment to be consistent with this idea. A different kind of plan is developed for young children.This plan is called the individualized family service plan (IFSP). In contrast to the IEP, it is meant to be oriented towards the family. There is explicit recognition of the importance of the family in the development of very young children and that the family also needs support. So, for the IFSP, there may be specific attention focused on helping siblings or in helping parents learn ways to promote the development of their child. Identifying eligible children is a major concern of this program.The law mandates that an assessment be completed promptly and a meeting with the family to develop the IFSP be developed within 45 days of referral. The IFSP should include a discussion of the child’s development, parental concerns, and a discussion of how services will be delivered and progress monitored. Unlike the IEP, the IFSP is reviewed every 6 months. As the child nears their third birthday, a written transition to school-based (preschool) services is required, and the IEP process may begin.The IDEA requires states to ensure that the process is completed by the time the child reaches their third birthday. For that reason, many states begin the process when the child is 2½ years of age. It is important for parents and health care providers to know what is available locally.

504 Plans

and

ADA

As we mentioned previously, a different law (Section 504 of the Rehabilitation Act) has to do with public school students with disabilities rather broadly defined. A 504 plan is designed, like an IEP, to help a student with a disability participate more effectively in school with accommodations and modifications of the curriculum. The definition here is much broader than under IDEA and includes children who have a physical or mental impairment that “substantially” causes difficulty, e.g., in school learning/participation. This has to be a persistent condition and frequently is used/invoked when a child has attentional problems or learning disabilities, e.g., to give extra time on tests. Either parents or schools can start the process for a 504 plan. The school considers the documentation of the disability (e.g., from the primary care provider or specialist), any observations from school or parents, and the results of their own assessment of the child as well as the child’s academic performance. Outside (independent) evaluations can be done and submitted by parents or requested by school or parents (obviously the parents would have to give consent). A number of safeguards are built in to protect the child. Schools vary considerably in how they do 504 plans. Usually the plan will document the additional services, support, or special accommodations the child will get, who will provide supports, etc. Typically the 504 plan is much less detailed than the IEP and doesn’t include annual goals (important for documenting progress in children with ASDs). As a general rule, parents should seek IEP rather than 504 plans.

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Discipline

Behavior problems can lead schools to consider disciplinary actions. This is, as one imagines, more complicated if a child has a disability. Under IDEA, even under section 504 and the ADA, reasonable accommodations may be requested (and such requests should normally be granted) for the child. For example, a child with autism who is sensitive to loud noises should not be suspended from school if they have a panic attack and run out of school during a fire drill. Any school suspension beyond 10 days requires a review and determination whether the conduct stemmed from their disability. If a student has a behavioral plan and problems still occur, the team needs to review the behavior plan.There are very specific issues, including consideration of whether the behavior is a manifestation of the disability that must be considered before a student can be suspended beyond 10 days, and lengthy suspensions particularly require careful review under IDEA. Even if a student is suspended, the school is usually obligated to continue to provide educational services. Suspension is not an excuse for excluding children with disabilities from education. For very serious situations (e.g., involving guns or danger to other students), the child can be placed in an alternative setting for up to 45 days, during which time the IEP team will review the IEP and placement.There are special aspects of the “stay put” provision of the law and specific consideration for situations where the child’s behavior is a danger to self or others. If a student’s educational placement is being changed as a result of code-of-conduct violations, there must be a “manifestation determination” in order to determine whether the behavior was a result of the child’s disability or of the district’s failure to provide an appropriate educational program or an appropriate behavioral intervention.

Issues

for

Transition

of

Adolescents

and

Young Adults

As students approach high school it becomes important to include them in the IEP planning process. This is particularly critical for transition planning and it is important that the student have as much of a voice as possible in this process and their own longer-term planning. We have increasingly discovered the importance of transition planning in helping students make the move from high school. (Mayerson, 2020; Solomon, 2020; Wehman et al., 2020; Wisner-Carlson et al., 2020). As we discuss in more detail in Chapter 7, transition planning should start in high school, if not earlier.The transition plan should be individualized and cognizant of the strengths and interests of the students and should include opportunities to develop community and work skills (Mayerson, 2020). This plan is developed by the IEP team and should also include measurable goals with appropriate services to meet the student’s needs. There should be identification of who is responsible for what. The student should be informed of these goals. A year before the student becomes a legal adult the law requires that the student be notified of this (the age of legal adulthood varies from state to state). Note that a different section of the Americans with Disabilities Act applies to accommodations for students in college/ vocational school as well as in the workplace. We talk more about this in Chapter 7.

Private Services Parents can withdraw their child from a school program they do not believe is appropriate. They can provide home-based instruction along with services such as occupational or speech therapy on a private basis. Schools may be liable for reimbursement of parents’ costs if the IEP is found not to be appropriate



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and if the program provided by the parents was beneficial educationally. Parents should understand that there is no guarantee that they will be reimbursed—only that they can ask for reimbursement. Further, parents must be aware that there are strict notice requirements in order to properly preserve the right to reimbursement.

Insurance-Related Issues The maelstrom of issues involved in insurance coverage is a truly complicated topic and one that is subject to change, particularly right now in the United States. One of the (many) tensions here is that with PL-94-142, schools have taken the leading role in providing a broad range of services to the child with autism. But what about needs for services at home? Or if the child develops a problem like anxiety or depression? Insurance companies have generally not been so willing to step up to the plate to provide coverage. Despite the considerable hype in advertisements about various insurance and health maintenance organization (HMO) programs and the Affordable Care Act, all of which seem to emphasize the word care, caring is often minimally available; unless parents and others are willing to act as strong advocates for obtaining quality care, such care often is neither available nor provided. Increasingly, states have tried to mandate coverage, e.g., for ABA services. This has had its own set of complicated after-effects with a proliferation of services, not all of which are of the highest quality, since the reimbursement is often poor and training requirements often not extensive (Leaf et al., 2017). For problems like anxiety and depression or other mental health issues that usually are not seen as part of the school’s responsibility, insurance companies ought to step up to provide coverage. For mental health services coverage is notoriously complex. Often, psychiatrists don’t take insurance at all, given how poorly they are reimbursed and what they see as overly intrusive insurance documentation programs. For students with ASDs who have state-supported programs there may be some coverage available—paradoxically, often more than what is available to those with more traditional insurance coverage. Parents who are able to pay privately often get the best access to care but even then finding a good provider can be difficult. Provision of services (and entitlements to services) vary significantly for adults. The IDEA law no longer applies once the student has graduated high school or has aged out of their educational entitlement. It is critical that students and parents understand this. For adults going on to vocational school or college there are some protections under the Americans with Disabilities Act in the United States (e.g., relative to providing reasonable accommodations and supports in college). For adults who continue to need more intensive services, entitlements are often related to whether the person also has an associated intellectual disability (i.e., IQ