Is This Autism?: A Companion Guide for Diagnosing [1 ed.] 9781003403838

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“The two-​volume set, Is This Autism? A Guide for Clinicians and Everyone Else and Is This Autism? A Companion Guide for Diagnosing, is a towering accomplishment, bringing together the state of the art of scientific and clinical insights into autism with the lived experience and perspectives of autistic people. Sensitively written, meticulously observed, and profoundly compassionate, this book will transform your understanding of autism, whether you’re a clinician, a family member, or an autistic person yourself.” Steve Silberman, author of NeuroTribes: The Legacy of Autism and the Future of Neurodiversity “Is This Autism? is just brilliant –​genuinely two of the best books I have ever read! Drs. Henderson, Wayland, and White embrace Neuro-​ Affirming practice, bringing together their clinical and life experience to give a richness that is much needed within the medical and therapeutic field of autism.” ​Barb Cook, MAut, DipHSc, developmental educator, director NeuroEmploy Pty Ltd & NeuroDiversity Hub, founder Spectrum Women “Is This Autism? integrates the voices of autistic people and the latest research to provide a readable, empowering and comprehensive resource for clinicians of all kinds.” Lauren Kenworthy, PhD, pediatric neuropsychologist, Director, Center for Autism Spectrum Disorders, Children’s National Hospital “This book presents a respectful, rich, and expansive description of what Autism really looks like across individuals. It provides an invaluable resource to help clinicians move past the often inaccurate, restricted, and stereotypical expectations that have historically limited an appreciation for the full ‘spectrum’ of this diagnosis. It is a must read for all neuropsychologists as we all work with this population whether we know it or not.” Kira Armstrong, pediatric neuropsychologist, co-editor of The Clinical Neuropsychologist’s Special Issue: Assessment and Diagnosis of Autism Spectrum Disorders

“The strength of the book comes from the fact that the authors sought explicit feedback, collaborating deeply with multiple autistic contributors, who guided the direction of the book… Finally, our shared experiences are elevated to a space where their capacity to teach professionals, family members, peers, and everyone else is celebrated and maximized.” Dena Gassner, MSW, PhD(c), autistic scholar, adjunct professor, Towson University “These important books by Donna Henderson, Sarah Wayland, and Jamell White are easily, I might even say enjoyably, read and provide professionals giving the diagnosis a well-​researched way of thinking about Autism. Considering Autism, especially with the upsurge in incidence, I ask, ‘How do we stay curious?’ The answer is to read these books. The expertise conveyed is crucial for anyone interested in autism. The books are a necessary resource for clinicians, researchers and diagnosticians. Without hesitation, I rate them, to date, the most important work in the field.” ​Rachelle K. Sheely, PhD, President RDI “Lived experiences, professional expertise, and research are carefully woven together in Is This Autism? –​a must read for ALL clinicians to enable them to recognize and better serve the often unseen and unheard autistic clients that come into their offices.” Kim Clairy, OTR/L, autistic occupational therapist “Is This Autism? is revolutionary in its empowering messages for clinicians and for individuals with autistic brains, alike. Drs. Henderson and Wayland are clearly changing the conversation about how autism is understood and diagnosed, and the world is a better place for it. If you have any interest in autism (and even if you don’t!), this book is truly a must-​read! I assure you: You have never read another one like it.” Karin Varblow, MD, pediatrician “Is This Autism? presents current autism research and relevant clinical guidance within an affirming, easy-​to-​understand framework.” Jeremy Sharp, PhD, licensed psychologist and host of The Testing Psychologist podcast

“This amazing book is an indispensable tool for helping clinicians and parents understand and identify the less obvious presentations of autism. It is filled with practical wisdom rooted in the authors’ personal and clinical experience, as well as their enormous respect for neurodiversity. I’ve learned a ton that will make me a better psychologist!” William Stixrud, PhD, clinical neuropsychologist and co-author, The Self-Driven Child and What Do You Say? “Do you know what autism looks like in your neighbor, teacher, coworker, or aunt? An abundance of quotes and real life examples bring neurodiversity to life in this exceptional book that does not disappoint.” Theresa M. Regan, PhD, author of Understanding Autism in Adults and Aging Adults “Is This Autism? takes you on a personally guided tour into the hearts and souls of autistics. With the knowledge that Donna Henderson, Sarah Wayland, and Jamell White have harvested from decades of personal and professional work, they convey the many twists and turns of the developmental journey of autistics. One phrase stuck with me in particular: ‘A sense of belonging.’ This desire to be validated for who we are –​no matter how we show up in the world –​lies at the deepest core of every human’s longing. Henderson, Wayland, and White show us –​with compassion and inclusivity –​not only how to be informed about autistics, but how to be wise as well. With solid research, practical suggestions, and moving narratives from the experts who live the neurodivergent journey, we are invited to understand that only by knowing what is on the inside, can we –​as professionals and family members –​help on the outside. This book will become an essential guide for those of us committed to creating a world that adapts to and celebrates the unique experiences of autistics.” Rick Silver, MD, psychiatrist, founder and director, The THRIVE Center

“This groundbreaking book will revolutionize the way we think about autism. Well researched and well organized, Drs. Henderson and Wayland have created a definitive text that specifies and widens the lens through which we understand autism. This should be required reading for all professionals and lay people who want to understand the world of neurodiversity.” Dr. Rita Eichenstein, neuropsychologist and author of Not What I Expected: Help and Hope for Parents of Atypical Children “Reading these two volumes is like being supervised simultaneously by several master clinicians and a community of autistic people who know autism inside out. They are super-​accessible, completely down-​ to-​earth, and full of clinical pearls. In my view, the two volumes of Is This Autism? are essential reading for anyone who works in the fields of autism, psychology, psychiatry, neurology, pediatrics, child and youth development, education, speech and language therapy, occupational therapy, and mental health. ” Meng-Chuan Lai, MD, PhD, Child and Youth Mental Health Collaborative at the Centre for Addiction and Mental Health, The Hospital for Sick Children, and Department of Psychiatry, Temerty Faculty of Medicine, University of Toronto, Toronto, Ontario, Canada “This book is a MASTERPIECE. The information is new, beautifully stated, organized, important, helpful. Just gorgeous. I love it very much.”

Carol Stock Kranowitz, author of The Out-of-Sync Child

Is This Autism?

This companion guide to Is This Autism? A Guide for Clinicians and Everyone Else shows clinicians how to assess for the possibility of autism in clients of all ages. Understanding of autism has greatly expanded in recent years, and many clinicians feel ill-​equipped or confused about how to incorporate this knowledge into their diagnostic process. As a result, countless unidentified autistic people do not have reasonable access to proper identification or support. This book describes current assessment methods, including interviewing, rating scales, self-​report measures, social cognition tests, and behavioral observations. It also provides guidance regarding cultural considerations, common mistakes, and how to communicate with and support clients through the diagnostic process. This very practical clinical guide provides a clear and neurodiversity-​ affirmative approach to autism assessment, particularly for autistic individuals who have previously been missed. It is relevant to all healthcare professionals who want to learn how to identify autism in their clients. Donna Henderson, PsyD, is a clinical psychologist, specializing in neuropsychological evaluations for children, adolescents, and adults who would like to understand themselves better. She is a sought-​after lecturer and provides training and consultation for other healthcare professionals. Sarah Wayland, PhD, is the founder of Guiding Exceptional Parents, and co-​founder of The Behavior Revolution. She provides neurodiversity-​ affirmative support, education, and community for parents of neurodivergent children. Jamell White, PhD, LCSW-​C, has a background in clinical social work, special education, and human development and specializes in working with autistic children, adolescents, and adults. She has over 20 years of clinical experience.

Is This Autism?

A Companion Guide for Diagnosing

Donna Henderson with Sarah Wayland and Jamell White

Designed cover image: © Jeremy Sicile-​Kira www.jeremy​svis​ion.com/​ First published 2024 by Routledge 605 Third Avenue, New York, NY 10158 and by Routledge 4 Park Square, Milton Park, Abingdon, Oxon, OX14 4RN Routledge is an imprint of the Taylor & Francis Group, an informa business © 2024 Donna Henderson, Sarah Wayland, and Jamell White The right of Donna Henderson, Sarah Wayland, and Jamell White to be identified as authors of this work has been asserted in accordance with sections 77 and 78 of the Copyright, Designs and Patents Act 1988. All rights reserved. No part of this book may be reprinted or reproduced or utilised in any form or by any electronic, mechanical, or other means, now known or hereafter invented, including photocopying and recording, or in any information storage or retrieval system, without permission in writing from the publishers. Trademark notice: Product or corporate names may be trademarks or registered trademarks, and are used only for identification and explanation without intent to infringe. Library of Congress Cataloging-​in-​Publication Data Names: Henderson, Donna A., author. | Wayland, Sarah C., author. | White, Jamell, author. Title: Is this autism? : a companion guide for diagnosing / by Donna Henderson, Psy.D., with Sarah Wayland, Ph.D. and Jamell White, Ph.D., LCSW-C. Description: New York, NY : Routledge, 2024. | Includes bibliographical references and index. Identifiers: LCCN 2023003239 (print) | LCCN 2023003240 (ebook) | ISBN 9781032517667 (hardback) | ISBN 9781032517650 (paperback) | ISBN 9781003403838 (ebook) Subjects: LCSH: Autism–Diagnosis. | Autism spectrum disorders–Diagnosis. | Autism in children–Diagnosis. Classification: LCC RC553.A88 H4614 2024 (print) | LCC RC553.A88 (ebook) | DDC 616.85/882–dc23/eng/20230508 LC record available at https://lccn.loc.gov/2023003239 LC ebook record available at https://lccn.loc.gov/2023003240 ISBN: 978-​1-​032-​51766-​7 (hbk) ISBN: 978-​1-​032-​51765-​0 (pbk) ISBN: 978-​1-​003-​40383-​8 (ebk) DOI: 10.4324/​9781003403838 Typeset in Baskerville by Newgen Publishing UK

To our autistic clients, friends, and family–​ Especially those with late diagnoses And for those who still feel invisible or misunderstood–​ We see you. To our husbands–​ Thank you for your patience, support, and humor When one book turned into two. We’re really done now!

Contents

Notes for the reader  Foreword by Annie Kotowicz  Foreword by Marilyn J. Monteiro  Acknowledgments  Introduction 

xiii xix xxi xxiii 1

1 Framework: The current diagnostic criteria 

44

2 Knowing when to consider a social cognition assessment 

49

3 The parent interview 

58

4 The client interview 

87

5 Record review and collateral interviews 

107

6 Rating scales and self-​report measures 

118

7 Behavioral observations 

141

8 Social cognition testing 

159

9 Traits and diagnoses that can be confused with autism 

177

xii  Contents

10 How to organize and integrate your data 

231

11 How to have meaningful discussions about your findings  249 12 Recommendations 

265

The end 

296

Index 

297

Notes for the reader Donna Henderson, Sarah Wayland, and Jamell White

Before we begin, we want to orient you to our book and to the reasoning behind some of the decisions we made as we considered how to best communicate with you, our reader. Some of these Notes will feel familiar to those who have read our companion book, Is This Autism? A Guide for Clinicians and Everyone Else. Those points bear reiteration in this new context. But much is new, and we hope you will read it all, so you understand the context for this volume. This book is based on a combination of research, clinical experience, and life experience. Our understanding of autism began at home and extended into our professional lives. Living and working with autistic individuals has given us a deeper understanding than either experience alone could have provided. Of course, our experience and this book are informed by the research and we have referenced it whenever possible. Because we are aware that footnotes and in-​line citations can be off-​putting for many readers, we have attempted to make our book more readable by using the citation convention adopted by publications like Scientific American. We refer directly to the authors in the text and list references at the end of each chapter. Other observations are based on our professional experience and the lived experience of the many autistic people we have known. We fully support #nothingaboutuswithoutus. While we, the authors, recognize neurodivergent qualities in ourselves, we are not autistic, and we believe that it is essential to include the perspective of autistics. To that end, many autistic individuals generously offered to share their lived experience in the form of quotes for this book. These quotes are offered in sections titled From the experts. We asked each of these individuals to choose the attribution for their quotes. Many of these are real

xiv  Notes for the reader

names, some are pseudonyms, and a few are simply one name with no last initial. Each was the choice of the person who is quoted. Additionally, we include many vignettes throughout this book. They are all true, but of course all identifying information has been changed. We feel honored that so many people have entrusted their stories to us. Additionally, we have an autistic advisory board, who read and provided feedback on each chapter. We aimed to create a board that is diverse in age, gender, race, and ethnic background. There also happen to be several autistic individuals on our clinician advisory board. We present the research on females because that research informs our understanding of autism for individuals of all genders. There is a substantial body of research on the ways in which autistic women and girls present differently from their male counterparts. However, there are also a number of boys and men who are not identified early, if ever. And, of course, the experiences of people who are non-​binary, transgender, gender fluid, or otherwise not cis-​gender also matter. It is our hope that by shedding light on the experiences of anyone with previously undiagnosed autism –​regardless of gender –​all will benefit. In an attempt to better understand the experiences of people of different cultures, we have included sections titled Connecting culture, written by Jamell White, PhD, LCSW-​C. Jamell points to the importance of explicitly discussing the intersection of culture and autism, as a person’s cultural experience and identity affect every interaction and cannot be parsed out from their broader experience. It is beyond the scope of this book to review the enormous amount of relevant information regarding cultural awareness, diversity, and sensitivity. However, we will attempt to highlight instances where the issues of cultural humility are particularly relevant and to generally raise clinicians’ awareness of the need to continually strive to understand each client within their own individual cultural context. Stories are interwoven throughout the connecting culture sections in order to illuminate the experience of culture in the journey of life with

Notes for the reader  xv

autism. As one mother beautifully stated, “The insensitivities are intersectional: race, gender, disability, and developmental differences.”

Overview of this book In this book, Donna explains her process for identifying and a­ ssessing possibly autistic people. It is our strong belief that this process does not necessarily require a neuropsychological evaluation, referral to an autism clinic, or other expensive and often inaccessible means of gaining a proper diagnosis. Thus, the process we describe, and most of the chapters in this section, focus on approaches that can be used by a variety of qualified mental health professionals (as specified by state and professional licensing guidelines). In some cases, there are complicating factors –​co-​occurring challenges or alternative diagnoses –​which may require referral to a specialist for a more nuanced exploration of the possibility of autism and other co-​occurring conditions. In the companion book, Is This Autism? A Guide for Clinicians and Everyone Else, we explained WHY it is so important for clinicians (and everyone else) to identify and understand this type of autism. We also discussed the WHAT, by reviewing the many different ways that less obvious autism can present, and explaining exactly what to look for, using the DSM-​5-​TR criteria as a guide. Finally, we discussed the WHAT ELSE, specifically, common co-​occurring traits and challenges that are not currently part of the diagnostic criteria. In this book, we offer the HOW. We describe methods for collecting, organizing, and integrating information, and for engaging in collaborative discussions with clients to make meaning of their experience. This information is crucial, not only because it helps us determine whether or not an individual is autistic, but also because it helps us explain the diagnosis to others and make meaningful recommendations. If we’ve done a good job of gathering information and communicating our findings, the diagnosis should be a positive and life-​changing moment for our clients and their loved ones.

xvi  Notes for the reader

The words we use A central aim of this book is to convey our thoughts in a neurodiversity-​affirmative manner, and in working toward this end we have found ourselves struggling with language. Determining which words and phrases to use has been a moving target, in part because autistic individuals themselves have varying opinions on these matters, and in part because our collective thinking about this topic is evolving quickly, even as we write. With this in mind, we have made the best choices we could, knowing that inevitably some people would disagree with them. We are also aware that some of the choices, while based on current thinking, will become outdated at some point. We ask the reader to keep this complicated dilemma in mind and know that our intention has been to use language that is as inclusive and respectful as possible. Following is a brief explanation of our decisions about language. Person-​first language vs. identity-​first language. In the general community of people with medical disabilities, there has been a shift toward identifying an individual as a person first, with their disability representing only one aspect of their profile (i.e., a person with diabetes, versus a diabetic person). Person-​first language was conceived to ensure that people with disorders or diseases were not defined by their challenges. However, many autistic people argue that autism is lifelong, integral to who they are, and pervades every aspect of their lives. Their identity cannot be separated from their autism. Moreover, the use of person-​first language implies that the descriptor is a disease or disorder, and many autistics argue that autism is neither of these. Thus, they prefer to refer to themselves with their identity first (i.e., as an autistic person, versus a person with autism). The issue is complicated by the fact that while some autistic people prefer to use identity-​first language, there are others who prefer person-​ first language. We feel strongly that people should get to choose the way in which we refer to them. Based on our interactions with the autistic community, and particularly the type of individuals for whom we are writing this book, we are choosing to use identity-​first language. We hope that our readers understand this dilemma and know that there is no perfect solution. Similarly, we sometimes use the word autistic as a noun (instead of writing autistic person). Because we were unsure how this would be taken,

Notes for the reader  xvii

we did online polls with two autistic communities. Both clearly indicated that the vast majority of participants were comfortable or agnostic regarding this usage. Referring to people who are not autistic. Many people use the word neurotypical to refer to non-​autistic people. However, there are many individuals who are not autistic but also do not have typical neurology (if such a thing even exists). Dividing people into autistic and neurotypical categories does not take into account the countless individuals who have non-​autistic types of neurodiversity, such as ADHDers, dyslexics, etc. While the term allistic means non-​autistic, we find that many people are not familiar with this term. For these reasons, we have chosen to refer to non-​autistic individuals simply as non-​autistic individuals. Some of the people we quote use the term neurotypical to mean non-​autistic; we have preserved their wording within their quotes. Avoidance of functioning labels (e.g., high functioning and low functioning). In the autism literature, high functioning is an outdated term that typically refers to autistic people who do not have an intellectual disability; it does not take into account the countless ways in which these people may nonetheless struggle and require support. Similarly, low functioning is an outdated term that often refers to low intellectual functioning and/​or profound autistic traits, without reflecting the many ways in which those individuals may be using their strengths to function well in their lives. Moreover, functioning is not static; our functional level varies from day to day and context to context. Indeed, many autistics argue that environments designed by and for non-​autistics are what make it hard for them to function. Finally, labeling a person as high or low functioning is a subjective judgment made by one person about another person, often without regard for the individual’s lived experience. For all of these reasons, we avoid these terms.

From the experts: Their words about the words they use

“I was ‘somewhere on the spectrum’ or ‘had autistic traits’ or ‘was not neurotypical.’ It was a big step for me to say ‘I am autistic’ instead of putting any qualifications or modifiers on to it.” –​Drew R.

xviii  Notes for the reader



“I feel like I’m only ‘high functioning’ in other people’s eyes and they’re missing all the very strenuous work I’m doing under the surface. You could meet me at a party and never even be able to tell I’m on the spectrum, but what you don’t know is that I had to have lots of alone time to pump myself up for the party, and then lots of wind down time afterwards to recover. And even though I’ve never been described as ‘low functioning,’ I get mad when some of my friends are described that way, because I feel like it discounts how well they’re doing considering all of the difficult things they’re dealing with on a daily basis.” –​Zoe M.



“Many Autistics, myself included, see it as a key part of who we are, akin to things like race and gender.” –​Zachary M.

Foreword Annie Kotowicz Author, What I Mean When I Say I’m Autistic: Unpuzzling a Life on the Autism Spectrum

“I don’t think I’ve ever seen someone react quite like that to an autism diagnosis,” the psychologist laughed. “Maybe a sigh of relief, but never such exuberance!” That was five years ago, so I’m paraphrasing his words. I also forget exactly how I replied –​maybe I explained why I had burst into a wide smile and thrown both my hands upward, or maybe we moved on to discuss the results of my evaluation. In any case, here’s why I reacted so strongly. First, a diagnosis can be life-​changing. Knowing that I’m autistic has improved my relationships, mental health, day-​to-​day abilities, and sense of identity. I filled a book with stories of how it has healed past memories, helped with present struggles, and given me hope for the future. Second, a diagnosis isn’t easy for someone like me to obtain. As an adult woman with an arsenal of coping strategies, my battles often go unnoticed in public. When I first began looking for a clinician to evaluate me for autism, other autistic women warned me how difficult it would be to find someone who could recognize subtle or atypical presentations of autism. I felt that I could only trust a clinician who had previously given an autism diagnosis to an adult woman. I searched online and made calls with no success, until finally another autistic woman shared where she had received her own diagnosis. Even then, I came prepared to defend myself, with a list of every autistic symptom I could remember throughout my life. I was grateful to receive a comprehensive evaluation based on a balance of information from multiple sources. Such an evaluation is still

xx  Foreword by Annie Kotowicz

difficult for many autistic people to find, but it doesn’t need to be. The more clinicians read this book, the easier it will become. I hope that, someday, the methods here will be widely adopted by experienced clinicians, and the book’s primary audience will shift to medical students and new clinicians. However, in the present historical context, my wish is for every clinician to read this book –​and its prerequisite, Is This Autism? A Guide for Clinicians and Everyone Else. Together, these books minimize the risk of overdiagnosis, misdiagnosis, and missed diagnosis. They provide a thorough and nuanced understanding of autistic traits, along with practical steps to identify those traits –​especially in autistic individuals who might otherwise fall through the cracks. That means the world to me, and it will change the world for many others like me.

Foreword Marilyn J. Monteiro, PhD Author, Monteiro Guidelines for Diagnosing Asperger’s Syndrome (MIGDAS-​2)

As a psychologist working primarily with autistic individuals and their families over the course of four decades, it is my pleasure to write this forward to Is This Autism: A Companion Guide for Diagnosing. My work in the field has focused on supporting autistic individuals and their families to find and tell their singular stories while providing each with a shift in the narrative towards a framework that supports neurodiversity-​affirming language and personal agency. When an individual and family reach out to a clinician with questions, they are seeking guidance through the process of finding and telling their story in a way that makes sense, resonates with their lived experience, and is validated by a competent professional. It is a life-​changing process for individuals and their families. The process of recognizing the autism spectrum brain style pattern of strengths and differences, describing that pattern in strength-​based individualized language, and writing that narrative is a complex one for clinicians. Donna, Sarah, and Jamell provide a road map for clinicians to better recognize and support autistic individuals across age and ability levels. After reading their book, clinicians will be more likely to recognize, describe, and document the autistic story for their clients. The words we use make a difference. I developed the MIGDAS-​2 sensory-​based conversational interview process to invite parents, teachers, and autistic individuals to tell their stories. Central to the process, the focus of my diagnostic work has been providing autistic children, adolescents, and adults with a diagnostic experience where they are encouraged to share their worldview, and where the clinician engages with and appreciates that worldview, while providing insight and positive, descriptive language to shift the way in which their story is perceived and told.

xxii  Foreword by Marilyn J. Monteiro

This emphasis on descriptive language highlighting patterns of strengths and differences is neurodiversity-​affirming and inclusive. A recurrent theme in Is This Autism: A Companion Guide for Diagnosing is advice for clinicians to use strength-​based language, and to listen carefully to the narratives that clients and families bring to the evaluation process. Donna Henderson, Sarah Wayland, and Jamell White have produced an excellent and comprehensive overview of the autism evaluation process for clinicians. They introduce clinicians to the complex and multi-​dimensional process of uncovering the individual autistic story, and how to do so in a respectful and affirming way. I highly recommend this introductory text for every clinician interested in expanding and updating their understanding of the autism spectrum brain style, with all of its amazing patterns of strengths and differences. Find the story. Tell the story in a strength-​based, affirming way.

Acknowledgments

Donna Teddy Roosevelt once said, “Far and away the best prize that life has to offer is a chance to work hard at work worth doing,” and Leslie Knope (played by Amy Poehler) added, “and what makes work worth doing is getting to do it with people that you love.” I feel incredibly lucky to do work worth doing, and to do it with people I love. First, I want to thank each and every one of my autistic clients, and those who love them, for generously sharing their lived experience. The members of this book’s autistic advisory board have spent countless hours reading every chapter, providing invaluable feedback, calling me out when I drifted into ableism, and helping me think through the many complexities of explaining the experience of one neurotype to another. I am deeply indebted to Carol Blymire, Yael Clark, Taylor Menetski, Eric Olsen, Drew Rae, Charlotte Riggle, Allie Segal, and Leen Vermeersch. I am also indebted to the many other autistic individuals who engaged with me in person, online, and in social media, including Andrew Komarow, Asiatu Lawoyin, Audrian Flory, Emily Gerson, Angelina Lu, Zachary McGinley, Lauren Ober, everyone in the Slack group, and the many individuals who engaged with me in various Reddit and Facebook groups. I was lucky to have a clinical advisory board whose comments made me work harder, think more deeply, and write more precisely. I am deeply grateful to Amara Brook, Audrey Brumback, Kathy Dow-​Burger, Lara Doyle, Jennie Green, Carol Stock Kranowitz, Julie Kovac Ray, Melissa Schwartz, Karin Varblow, and Monica Adler Werner.

xxiv  Acknowledgments

I am grateful to the following clinicians who shared their knowledge and wisdom along the way: Kira Armstrong, Jesse Brand, Samantha Buell, Kim Clairy, Lance Clawson, Jonathan Dalton, Sangeeta Dey, Meaghan Doyle, Rebecca Goldberg, Jessica Koehler, Wendy Law, Ellen Leibenluft, Deirdre Lovecky, Kelly Mahler, Devon MacEachron, Elisa Nebolsine, Megan Anna Neff, Theresa Regan, Lindsay Scharfstein, Haniya Silberman, Steven Vobach, Sondra Wolff, and Bonnie Zucker. I am also indebted to friends and family who provided all manner of support. These include: the Auptimists (Judy Bass, Caron Starobin, Sarah Wayland, and Jamell White), Kelly Carney, Stephanie Hicks, Salya Namazi, and Bill and Starr Stixrud. Patty Eyster, it is not hyperbole to say that this book would not exist without you. On a professional level, you opened my eyes to autism, and on a personal level, your support, insight, and inspiration have meant the world to me. Cathy Marchese, my honorary daughter, thank you for the invaluable research support and for your friendship. Katia Frederiksen, not only are you a superb neuropsychologist, but you have a superpower in copyediting. Thank you for taking my adequate writing and consistently improving it. It has been a joy to collaborate with you, not only on this book, but for the past decade of learning together. Jamell White, in addition to your invaluable contributions to this book, your clear thinking, wise counsel, and steadfast support have gotten me through many challenging moments and are deeply appreciated. Sarah Wayland, my writing partner and dear friend, it was a joy to give birth to our two book babies with you. You are a truly brilliant and generous person, and your dedication to helping others is a constant source of inspiration. Thank you for taking this leap of faith with me! Last, but certainly not least, I thank my unendingly supportive husband, Scott, who had no idea what he was signing up for when he first said, “Sure, write a book!” Scott, I am deeply grateful to have built a life with you.

Sarah It is impossible in a few short sentences to convey the depth of my gratitude for the support of my community as Donna and I worked to

Acknowledgments  xxv

usher our “book babies” into the world. Like Donna, I had no idea that so many people –​family, friends, colleagues, clients, and strangers –​ would support us in such deep and meaningful ways as these books revealed themselves to us. Donna has thanked many of you by name above; please know that I too am deeply indebted to each of you. My clients, especially, may not have realized how important they were in inspiring me to continue, even when things got very difficult. It is because of you, my dear clients, that I wanted these books to see the light of day. Donna Henderson –​you are an inspiration and a true friend. I could not have asked for a better collaborator in this process. I have learned so much from your kind and gentle support, your honesty, your undying curiosity, and especially your passion for making the world a bit easier for everyone. Jamell White –​from you I have learned that it is only by asking that we can hope to develop a better understanding of what others are navigating. I am grateful for your wisdom and grace, not to mention your friendship. Last, but definitely not least, thank you to my family, and especially my husband, Alan Thompson, who has always encouraged and supported me as I follow my dreams. I am so grateful for your wise counsel and enduring faith in me.

Jamell A special thank you to all of the wonderful individuals, families, and professionals who were willing to trust me with their personal journey living, loving, and supporting autism. I hope their stories (and the many others shared with me throughout my career) bring us all to a greater place of cultural humility as we lean in to understand and appreciate how autism uniquely informs experiences. To the amazing authors, Donna and Sarah –​thank you for inviting me to join you in this endeavor of bringing the experiences of autistic people to the forefront, while giving the (often overlooked) cultural aspects a spotlight. May the words and expertise of those shared in this book remind us to not assume and to simply ask!

Introduction

“I no longer feel like I’m a constant apprentice at being someone else. Now I’m able to see that I’m already a master at being myself.” –​Rachel K.

Where to begin? This book is meant to be a companion guide to Is This Autism? A Guide for Clinicians and Everyone Else. That book, written for a wide audience, describes WHAT to look for when considering possible autism. It reviews the many different ways that less obvious autism can present, as well as common co-​occurring challenges and autistic strengths. This book, written for clinicians whose licenses permit them to diagnose, offers the HOW. Specifically, how to collect, organize, and integrate information to help our potentially autistic clients make meaning of their experience. It is essential to fully understand WHAT to look for, before learning HOW to look for it. Thus, if you have not yet read Is This Autism? A Guide for Clinicians and Everyone Else, I strongly encourage you to do so before reading this book. It provides an essential framework for understanding the process described in this book. If you have already read the prior book, you will notice that some sections of this introduction feel redundant, and you may be tempted to skip over it. While there is some duplication in this chapter and the chapter outlining the DSM-​5-​TR and ICD-​11 diagnostic criteria, there is also new information in this introduction that is specifically relevant to clinicians who can diagnose and was not included in the prior book.

DOI: 10.4324/9781003403838-1

2  Introduction

Why did I write this book? If you are a mental health or other healthcare professional and you feel confused, intimidated, or lacking in confidence about your knowledge of autism, you are not alone! Understanding of autism has expanded rapidly over the past few decades and particularly over the past few years, in part due to the advocacy of many autistic adults. Dr. Murphy is a psychiatrist who works with adult clients. He had little training in autism, in part because he was trained several decades ago, and in part because his training did not address disorders that begin in childhood. When Dr. Murphy thinks of autism, he thinks of someone who flaps, is minimally verbal, and requires full-​time care and supervision. Dr. Murphy is not aware that his knowledge of autism is outdated, and he never considers autism in the process of differential diagnosis with his clients. Dr. Billings is a licensed psychologist. She received some training about autism, but it was never a strong interest for her, and she has always felt vaguely intimidated by it. Now that she has been a psychologist for 20 years, Dr. Billings is secretly embarrassed that she does not fully understand autism. She rarely considers it in the differential for her clients, and when she does, she simply refers the client to another professional. Marci Grey is a masters-​level psychotherapist. Marci is aware that some of her clients are undiagnosed autistics, but she is unsure of what to do about it. Even though she is licensed to diagnose in her state, Marci feels that she should not diagnose autism because she does not do formal assessments.

However, clinical training has not kept pace with this new understanding. This is a significant problem, not only for autistic individuals and their families, but also for clinicians. I have met countless clinicians who confide that they are confused and intimidated by autism, and they are often embarrassed to admit this to colleagues or supervisors. Some research supports my experience. For example, in 2021, Silke Lipinski and her colleagues surveyed 498 psychotherapists who work with adults to assess their knowledge of autism and whether they felt competent to diagnose and treat autistic clients without intellectual disability. They found that:

Introduction  3

• Many of these therapists had misconceptions and outdated beliefs about autism. • Therapists reported that they received significantly less education about autism (and ADHD) than other similarly prevalent mental health diagnoses (e.g., schizophrenia, eating disorders, obsessive compulsive disorder) included in the study. • Therapists also rated their own competence to diagnose and treat autistic clients as lower than their competence to treat clients with these other diagnoses. Moreover, the authors found that therapists were more open to accepting autistic clients when they had a better understanding of autism. The authors considered the fact that therapists were so poorly informed about autism “worrying,” because of the crucial role that therapists play in identifying previously undetected autism in their clients. I agree. This problem extends beyond mental health professionals. As Silke Lipinski and her colleagues concluded, “Knowledge about autism is poor, not only in psychotherapists but also in healthcare providers in general… and in the general population….” These studies are consistent with reports from autistic adults, who describe great difficulty accessing diagnosis and treatment. They report that the most frequent reason mental health professionals decline to take them as clients is the professionals’ lack of knowledge about autism. Autistic adults also report that mental health professionals have difficulty understanding that their physical and mental health challenges are often related to their autism. In short, autistic individuals do not have the same access to healthcare as non-​autistic individuals, and healthcare professionals feel uncertain, ill-​equipped, and, I believe, sometimes secretly embarrassed about this weakness in their professional expertise. If you feel this way too, you are not alone!

A brief historical perspective As I write this book, the first person diagnosed with autism (Donald Triplett) is still alive. However, our understanding of autism has evolved quickly and dramatically. In its first few decades, autism was considered to be a subtype of schizophrenia –​rare and severely

4  Introduction

debilitating. Until the 1980s, most people had still not heard of autism. In the early 1990s, many people were introduced to autism through Dustin Hoffman’s portrayal of Raymond in Rain Man –​a White male with some special abilities who behaved oddly, didn’t make eye contact, and needed almost constant care and supervision. Our understanding of autism changed again after the 1994 revision of the DSM, which included Asperger’s –​people with average to well-​ above-​average intelligence and less obvious (or perhaps less disabling) autistic traits. Sheldon from Big Bang Theory, an overtly quirky White male, is an example of this. By the late 1990s, researchers and clinicians understood autism as a genetically determined neurological difference (rather than a result of refrigerator mothers), and our understanding of autism has continued to expand rapidly in recent years. In the 2010s, awareness began to expand to include the so-​called female phenotype of autism, which is less externally obvious. This led the field to understand that there are individuals with a less obvious presentation of autism who do not fit the stereotype of autism but who are, nevertheless, autistic. The idea of the female phenotype of autism taught us about the concept of camouflaging, sometimes called masking or passing as non-​autistic. We learned that some autistics actively mask their autism (e.g., by effortfully making eye contact or by hiding their repetitive behaviors), and that we needed to look under the surface to “see the autism.” Autistic girls and women taught us about autistics who mask so well that they blend in, which can make it incredibly difficult to access diagnosis and support. That said, males too can have a less obvious presentation of autism. Furthermore, as we learned that gender is not a binary construct, we were forced to face the fact that referring to a female phenotype excludes the many individuals who are gender non-​binary, gender fluid, or otherwise do not relate to the social construct of a binary gender. This is particularly important, as a significant number of autistic individuals fall into one of these groups. Throughout this book, I will highlight what we’ve learned from the girls because of this history but please know that our new understanding can apply to people of all genders who have a less obvious presentation of autism.

Introduction  5

The neurodiversity paradigm Another recent expansion in our thinking about autism is important: The idea that autism is a natural form of human variation, rather than a genetic mistake. This idea is referred to as the neurodiversity paradigm.

Who is “right”? Pat (they/​their) is a healthcare professional with an advanced degree who identifies as autistic and feels strongly that this is a trait, not a diagnosis or a disorder. Pat feels offended that autism is even included in the DSM and feels marginalized by people who think of autism as undesirable or problematic in any way. Pat also feels marginalized by people who suggest that their autism isn’t legitimate by saying, “But you don’t look autistic!” Andrew (he/​his) is a highly accomplished finance professional who identifies as autistic. He feels that having an autistic brain confers both strengths and challenges, and he is comfortable with autism being seen as a diagnosis. Andrew feels invalidated by people who feel that he is too successful to be truly autistic. At the same time, Andrew feels that he has been shamed for preferring the phrase “person with autism” instead of “autistic person.” Andrew feels stuck in the middle. Josie (she/​her) is a 6-​year-​old with tremendous academic, social, emotional, and behavioral challenges related to being autistic. Josie’s parents feel overwhelmed as they try to support her and manage her behavior. They also often feel exhausted, angry, isolated, and guilty. Josie’s mother recently read an article about neurodiversity, which stated that autism is simply a form of biodiversity and should not be considered a medical problem. Josie’s parents feel marginalized and invalidated by the idea of neurodiversity. There is no single truth in this complex matter. Each person and family needs to find their own way through, while honoring different points of view.

The neurodiversity model holds that autism, like other biological variants, is simply part of human biodiversity. To explain this, I’ll use the example of being left-​handed, though I am not suggesting that left-​ handedness is as consequential an experience as being autistic.

6  Introduction

There was a time when being left-​handed was pathologized. It was considered to be a defect or a sin (the word “sinister” actually means left in Latin). Lefties were shamed, blamed, inconvenienced, and forced to go against their natural physiology, for the sole reason that they were different. At times, this was abusive. For example, some lefties had their left hand tied behind their back throughout the school day. Eventually, the medical community, educators, and the general public realized that being left-​handed is not inherently bad; it is simply part of biodiversity. Now, lefties are not shamed, blamed, or made to struggle against their own bodies (though it can still be more stressful to be a lefty in a right-​handed world). The term neurodiversity was first used by Judy Singer, an autistic social scientist, in the late 1990s. I find it helpful to compare the neurodiversity paradigm to the traditional medical model (see Table I.1). As Elizabeth Pellicano and Jacquiline den Houting have stated, in the medical model, “autistic people and their families are regularly presented with the message that being autistic is a tragic fate, with an autism diagnosis presumed to prompt grief and mourning.” In addition to the obvious implications for autistics and their families, I am concerned about the effect this model has on clinicians. Presumably, if a clinician thinks of autism as tragic, they will be disinclined to look for it, diagnose it, and openly discuss it with their clients. And when these clinicians do discuss autism, it will be with trepidation, anxiety, and pity. How else does one present bad news? However, if we take the point of view of neurodiversity, then autism is not a disorder, much as being left-​handed is not viewed as a disorder. We don’t diagnose people whose profiles vary in ways that are a regular part of the human experience. However, if someone is struggling, even though the struggle results from a mismatch between their brain and their environment, a diagnosis can serve many purposes. It can change the narrative –​for the individual, their family, school, etc. –​and eliminate labels (like oppositional or lazy) that are inaccurate and/​or judgmental. It can also be used to guide intervention in a direction that is unhelpful or even harmful. A diagnosis can also confer legal rights, such as accommodations and support, and it can guide appropriate intervention and support. A diagnosis, however, should not mean to convey that something is wrong within this person. Instead, it leads to an understanding that the person was born with a different type of nervous system, and it is incumbent on us to acknowledge that. In doing so,

Introduction  7 Table I.1 Medical model vs. neurodiversity paradigm Medical model

Neurodiversity paradigm

Core assumption

There is a normal way of being, and anything significantly different from that is inherently bad –​a flaw that requires correction.

There is no normal. Brains come in many varieties, no two brains are alike, and there is no better or worse. Moreover, neurodiversity confers a competitive advantage to our species.

Conceptualization of autism

Autism is a disease or disorder. It is undesirable and categorically bad.

Autism is part of human biodiversity and on an individual level is an inherent part of a person’s identity.

Conceptualization of disability

Disability is a defect within a person.

Disability results from a poor fit between a person and their environment. The lack of environmental support or flexibility is disabling.

Language used

Deficit based, ignores strengths.

Difference based, includes strengths.

Goals of treatment

The goal is to make the autistic person look less autistic or to find a cure.

The goal is to help the autistic person be their authentic self in a way that is functional in their life. Treatment should effect change in the environment to shift negative perceptions and better support the autistic person.

Ideal outcome

To prevent or cure autism.

To change the cultural narrative about autism (and other forms of biodiversity that have been pathologized).

8  Introduction

we can then discuss tools and strategies for living an authentic life as an autistic person in what we know is a non-​autistic world. With these additional gains in our knowledge about autism, the spectrum is now understood to be much wider and more varied than previously believed. While the focus in this book is on people who have less obvious presentations of autism, of course there are many autistic people whose presentation is more consistent with what we knew about autism in the early days, i.e., with low intellectual functioning, significantly impacted language skills, and/​or high support needs. Different experiences, all valid As I write this book, there are almost 8 billion people in this world; at the current prevalence estimate of over 2%, that means that there may be well over 150 million autistic people. Any group this large inevitably represents tremendous diversity. One autistic person or group does not speak for all autistic people (and I certainly don’t speak for any of them). Moreover, the neurodiversity approach feels right and appropriate for some but not all autistic people. This book does not focus at all on people who are easily recognized as autistic, who have very high support needs, who may require significant care and supervision throughout their lives, and/​or who are more likely to receive early diagnoses. I do not want in any way to invalidate the experience of these individuals, or the experiences of those who love and support them. They are just not the focus of this particular book. I encourage everyone in the autistic, autism, and healthcare communities to continue to engage in thoughtful and respectful dialogue as we all grapple with these complex issues. We have a common goal; to improve the lives of all autistic people.

What is Autism? As our understanding of the autism spectrum has grown more complex, it has become increasingly difficult to come up with a single

Introduction  9

definition that can account for such a huge and heterogeneous group of people. Autism has countless variations. With that in mind, and focusing on individuals with a less obvious presentation of autism, we know that: • Being autistic, at its core, means having a different type of nervous system. • If you have this different kind of nervous system, you’re going to experience, process, and respond to the world differently from non-​autistics in a number of ways. This can include differences in your experience of external sensations (e.g., noise, textures), your experience of internal sensations (e.g., hunger, thirst, pain), your movement patterns (e.g., stimming, dyspraxia), your communication (e.g., having and preferring a more direct communication style), and your information processing (e.g., being more detail-​oriented and less context-​driven). • These differences may change over time but are generally lifelong and pervasive. That is the core of autism, but there is also more to it than that. Depending on the severity of the presentation, having an autistic nervous system is not necessarily a problem per se, except that autistics have to live in a world that is designed for and largely by non-​autistics. This can be incredibly stressful. Simply stated, the problem is not that something is inherently wrong with autistics, it’s that they must cope with the mismatch between their nervous system and a world that was not designed for them. This mismatch causes many problems for autistics, which can very generally be categorized as overwhelm and misunderstanding/​being misunderstood. These two challenges –​frequent overwhelm and miscommunication –​often result in social problems and anxiety, which is what non-​autistics often notice. People see the visible, behavioral manifestations of autism, so they think that’s what autism is, like seeing the part of the island on top of the water and thinking that the island is a flat, floating land mass with nothing underneath. However, the social problems are the result of being autistic (in a world built for non-​autistics), not the core of it. When we understand this, we can see why some autistic people do

10  Introduction

not look as autistic as others. The behavioral manifestations, i.e., the social challenges, are a result of the autism, not the autism itself. Let’s try a thought experiment to illustrate this. Pretend that I’m taking you to the Land of Flurb. Let’s say that in this culture, as in most cultures, most of the social rules are not explicit (i.e., they aren’t explicitly taught but need to be intuited by each individual), but I’ll tell you a few just to help out. Eye contact is considered to be rude. Every time you say the word the, you are expected to touch your shoulder. Be careful not to smile when you greet or meet someone or when you say good-​bye, but be sure to smile during conversation. Additionally, the Flurbians have different sensory needs than we do. They strongly prefer to have very loud music blaring all the time, and their preferred room temperature is about 102 degrees. Let’s pretend that you are in Flurb, and throughout your day, during every interaction and task, you have to cope with all of this. • Would you be distracted? Stressed out? Physically uncomfortable? • Would you have difficulty hearing/​listening to others? • Would your attention, energy, and/​or social motivation suffer? • Would you be easily able to connect with others? Impress them, convince them, self-​advocate? • Would you be able to be your authentic self ? By the way, I helped you out by listing some of the rules explicitly for you. In real life, autistics have to figure out these rules, which are typically communicated implicitly and which can change depending on the situation. For example, how much eye contact to make, how close to stand, and how much to self-​disclose are all relationship-​and context-​dependent. Do you think you would accidentally make eye contact or forget to touch your shoulder? If so, you would be considered rude, disrespectful, or weird. And you’d want to say, “Hey! I’m new here! I’m just trying to figure out what I’m supposed to be doing to fit in! And I have a headache from the music and the heat!” But you might not be able to say any of that, and if you did, people would find you odd. You

Introduction  11

would not be meeting the (arbitrary) social expectations, so you would be misunderstood, invalidated, and rejected. But wait, there’s more! When there is a mismatch like this, the pressure is entirely on the people in the minority to change and adapt. In our world, autistic people are the minority. When there is an awkward interaction between an autistic person and a non-​autistic person, only the autistic person is faulted or blamed. This paradigm is referred to as ableism. Autistic people are blamed by others, and they often then internalize and blame themselves. “I’ve sort of learned to think about it as a cultural difference, that when I’m communicating with someone who is neurotypical, we’re engaged in intercultural communication. I might as well be talking to someone from Portugal or Brazil or India, and the differences between us are really grounded in a very different kind of worldview, orientation, and experience.” –​Pat G. I am certain that our understanding of autism will continue to evolve, but there are four constants I know for sure: • Being autistic affects every aspect of an individual’s experience –​ not just social, but also sensory, information processing, communication, physical health, emotional experience, etc. • The manifestation of nervous system differences presents differently in each person; there are endless variations. • Autistic people have both strengths and challenges. • There are people who do not present with the stereotypical idea of autism, but they are nevertheless autistic.

If the external presentation is so subtle, what’s the big deal? Mitch is paraplegic; he is able to use his arms well but not his legs, so he uses a wheelchair to get around. One day, Mitch arrives for an important meeting only to realize that he needs to climb a flight of stairs to enter. There is no other way into the building. Because he has no other options,

12  Introduction

Mitch leaves his wheelchair and slowly, effortfully climbs the stairs, using his arms to drag his body. Mitch eventually gets to the top, but he is exhausted, embarrassed, and unable to progress into the building without his wheelchair. On your way to the same meeting, you easily breeze up the stairs. When you encounter Mitch, and he tells you what he had to go through, would you say to Mitch, “What’s the big deal? You got here, didn’t you? So there’s no problem.”

As noted in Is This Autism? A Guide for Clinicians and Everyone Else, one of the most common questions I am asked is, “If these individuals can blend in and present themselves as non-​autistic, then they aren’t really autistic, are they? What’s the problem?” This question takes the point of view that autism merely consists of the behaviors that others can see, and it does not account for the tremendous effort, exhaustion, and stress that is going on behind the scenes. For example, someone may seem to be “good at making eye contact.” However, if doing so is effortful, forced, distracting, or uncomfortable for them, that is a problem! The research clearly shows that being autistic leads to a much higher risk for anxiety, depression, sleep disorders, eating disorders, and suicide (ideation and action). Autistic individuals are also at higher risk for many other co-​occurring conditions, such as cardiovascular disease, gastrointestinal disorders, asthma, allergies, autoimmune diseases, thyroid disease, diabetes –​the list is too long to include here (see e.g., the work of Lisa Croen and her colleagues for more detail). Many of these co-​occurring conditions were reviewed in the prior book, Is This Autism? A Guide for Clinicians and Everyone Else. Here, I’d like to highlight some of the many ways that being autistic can be incredibly hard, even when, or especially when, the autistic person is able to blend in. • Compensatory techniques do not mean that a person has social intuition. These strategies are what an individual has figured out will help them to fit in. The individual uses compensatory techniques, such as smiling back at a smiling person, because they often seem to work –​not because the individual understands other people’s intentions or can anticipate other people’s reactions.

Introduction  13

• Compensatory techniques only work in some situations. Inevitably, the individual will encounter situations in which their methods do not work. They must then develop new strategies, often with no guidance or support (e.g., when they get their first job or have their first romantic relationship). • Even when they work, compensatory techniques require significant cognitive, emotional, and sensory resources. Remember the thought experiment from The Land of Flurb? • Autistics are chronically misunderstood. The camouflaging that these individuals must do can leave them feeling misunderstood and isolated. All too often, autistic traits and behaviors are interpreted by non-​autistics as character flaws. Even worse, the autistic individual often internalizes this judgment, which then fuels depression and poor self-​image. • Pretending to be someone else most of the time doesn’t allow a person to figure out who they really are. Thus, autistics are at a huge disadvantage when trying to develop a sense of self, understanding who they might connect with, choosing a career, self-​advocating, etc. • Camouflaging makes it much harder to get an accurate diagnosis. Countless autistics who camouflage well, even when they themselves identify as autistic, are told by healthcare professionals that they cannot be autistic, simply because the clinician does not “see” the autism. It is important to be aware that interactions with clinicians are the best-​case scenario for camouflaging. These interactions occur on a one-​on-​one basis, with few, if any, expectations of reciprocity. Moreover, they are highly structured and take place in environments that tend to be sensory-​controlled (i.e., quiet and comfortable). This is one of the reasons why I am cautious about autism measures that rely solely on brief snapshots of an individual’s overt behavior. I rely on information gleaned from multiple sources, including their history and inner experience. • Invalidation is chronic. Even when these individuals do get a proper diagnosis of autism, they need to fight both internal and external perceptions that it’s not “real autism” because they don’t

14  Introduction

“look autistic.” This chronic invalidation can lead to a variety of emotional responses, including self-​doubt, anxiety, frustration, etc. • Autistics can easily be misdiagnosed. When their autism is not recognized, they can be given other diagnoses instead. While some of these diagnoses are indeed co-​occurring challenges (such as anxiety and ADHD), others may be inappropriate and even damaging. There is a long history of misdiagnosing unrecognized autistics. As Jessica Wright wrote in 2015, “In the 1950s and 1960s, thousands of children who had autism were either completely missed or were saddled with the wrong label.” Subsequent studies have borne this out. For example, K. Takara and colleagues (2015) reported that autistic people were frequently misdiagnosed with schizophrenia, psychotic disorder, bipolar disorder, major depressive disorder, and personality disorder. Misdiagnoses can lead to interventions and medications that are at best ineffective and at worst harmful. Remember, being able to compensate for a challenge is not the same as not having that challenge. The act of compensating comes at great cost to the individual’s emotional well-​being, cognition, ability to develop a sense of self, and general functional ability. Autistics who camouflage are at risk for anxiety and depression, and all too often they are lonely, victimized, and utterly drained, with little true sense of identity, negligible (socially acceptable) tools to self-​regulate and self-​ advocate, and few, if any, opportunities for validation, support, accommodation, or intervention. It IS a big deal. From the experts: Reflections on having a hidden disability

“In what other context does compensating for something mean that thing disappears? Someone with a broken ankle that uses a boot so they can continue to walk around still has a broken ankle. Making it about what you (an observer) are seeing/​ perceiving, instead of about what we are experiencing/​living, is really invalidating. [There is] vulnerability behind the camouflage. The burnout, the headaches, the crying, the disassociation, the pain, the exhaustion. For many of us I think that vulnerability is a deeply intimate and private affair –​you will probably never see it. That doesn’t make it any less real, any less impactful, or any less valid.” –​Ralph G.

Introduction  15



“When my partner used to pick me up from work and I’d slump into the car exhausted, I’d describe it as having had to play Tetris non-​stop all day (on top of doing my actual job). I worked 13 hours a week, and those 13 hours consumed my life. I spent the days after work recovering from a seven-​hour masking session, and the days before in an anxious haze over doing it again.” –​Jess O.



“If a schizophrenic person doesn’t tell you that they’re hallucinating, and manages to behave ‘normally’ while you’re interacting with them, are they not schizophrenic? You don’t see us after the interaction, or during the mental and physical breakdown that is burnout, or when we push ourselves/​get pushed a bit too far and melt down. We’re autistic. We hide it for survival –​until we can’t.” –​Lexa G.



“The cost of camouflaging is mostly the exhaustion. Life is like the music is blasting all day long, it reeks of perfume wherever I go, I am pushed and shoved in a crowd, and everything is in bright psychedelic colors. And while my senses are under assault I have to look pleasant, not irritated, trying to read social cues and follow a conversation, but my brain is busy taking care of all the other stuff. At the end of the day I often just shut down and can’t even answer the most basic questions.” “The other cost is that I found my relationships –​the few I have had –​were very unfulfilling. Of course they were! I hid a huge part of who I was! My social self is basically a mix of sitcom characters and a mental checklist of what I should and shouldn’t do during a social interaction. Absolutely exhausting!” –​Marie T.



“Not even my parents know that I will excuse myself to my room or the bathroom and cry and hit and scratch myself. I’ll bang my head on the wall and want to die over very simple interactions or events.” –​Katie R.

Why are we missing so many autistic people? Clinicians are missing autistic people for many reasons. First, the general population doesn’t understand the many ways that autism can present. Parents, teachers, and others who refer to us are not likely to refer a client for possible autism if that client does not show classic traits or behaviors, such as flapping or avoiding eye contact.

16  Introduction

Clients with less obvious autism are more likely to be referred for other concerns, such as anxiety or depression, and the referral sources may not be wondering about autism at all. This affects referral patterns along gender lines: Parents and teachers are more likely to refer boys for evaluations in general, and they are also more likely to refer boys specifically for possible autism. Next, there are significant problems with many of the tools we use for diagnosing autism, specifically rating scales, social cognition tests, and structured or semi-​structured interviews. Many, if not most, assessment tools are based on a narrow understanding of autism. For example, if a rating scale asks whether the individual is interested in unusual objects like traffic cones or paper clips, it is vulnerable to missing an individual with a typical but intense interest (such as a girl who is obsessed with Warrior Cats). Asking if the individual has empathy, is fascinated by spinning wheels, or repeatedly likes to open and shut doors is similarly problematic. To be clear, these questions are not necessarily irrelevant, but they are far more relevant to autistics who have a more obvious behavioral presentation and miss those who camouflage. The current diagnostic tools identify autism based on norms collected from testing more obviously autistic people. This means they exclude autistics who camouflage. This is a highly problematic vicious cycle: If a test is normed primarily on (White) males who received an early diagnosis of autism, and we use that test to define who is allowed into research studies, the data we get from those studies will reflect (White) males who get an early autism diagnosis. It will not necessarily reflect other groups, such as autistic people of other genders, minority groups, or those who have a less obvious presentation of autism. These individuals are then excluded from further studies, including those that define new normative groups, and on and on it goes. Researchers are beginning to understand and address this issue. For example, Anila D’Mello and her colleagues reviewed an MIT database of adults who had community-​based autism diagnoses and wanted to participate in autism-​related studies. They found that to be eligible for the studies, participants had to qualify as autistic on the basis of one test (the ADOS-​2). Of these diagnosed autistics, only 81% of the men and only 50% of the women met the ADOS cutoff score required for inclusion

Introduction  17

in autism studies. These were individuals who were already diagnosed! The researchers wondered if this problem was widespread, so they looked at six other databases that included more than 40,000 adults with an autism diagnosis. Studies that relied on a community diagnosis of autism had a more equal male–​female ratio; in contrast, those that required standardized testing (an ADOS) for inclusion disproportionately excluded autistic females. Another reason that the tests are not sensitive enough to diagnose autistics who camouflage is that they are not indicative of performance in real life. For example, many autistics can provide correct responses, but it takes them a long time (and a lot of effort) to do so. If the tests do not take this into account, then a client who gets eight out of ten correct in 20 minutes gets the same score as a client who gets eight out of ten correct in two minutes. Similarly, social cognition tests typically occur in a quiet, sensory-​controlled environment, one-​on-​one, with a (presumably) supportive conversation partner. They typically ask the client to do one thing at a time, for example, to look at a photo of one individual’s face and guess how that person may be feeling. In real life, of course, we must accurately interpret faces that are constantly changing. Moreover, we need to quickly and accurately integrate that information with their voice inflection, volume, what we know about them, the context of the conversation, etc. And when there is more than one person in the conversation, we must do this for everyone involved, at the same time. Another tool we use is the diagnostic criteria themselves. I actually find the DSM-​5-​TR criteria to be on point. However, they are focused on external behaviors and provide little to no guidance regarding internal experience. Most importantly, however, we are missing autistic individuals because of factors that we, as clinicians, can control. These include: • Lack of clinician confidence. I have met countless clinicians –​both testers and therapists –​who take their work very seriously and care deeply about their clients, but who categorically exclude autism from all aspects of their clinical work. They say, “I don’t do autism.” I believe that this is due to poor training and low clinician confidence, and, as discussed earlier, there is research

18  Introduction

to support this. I get it; there is a training gap and clinicians feel ill-​equipped to work with this population. Please keep in mind, however, if you are a tester, we are tasked with looking at the whole person. We do not have the luxury of saying, “I don’t do anxiety” or “I don’t do ADHD.” Similarly, if you are a therapist, please keep in mind that this is a marginalized minority group, with many significant mental health challenges, and it’s a problem that they don’t have the same access to mental health care as non-​autistics. • Our own feelings about autism. Some clinicians avoid raising the possibility of autism because they think of autism as categorically bad. They are then disinclined to look for it, diagnose it, or to openly discuss it with their clients. This does not help autistic people. • Diagnostic overshadowing. Many undiagnosed autistics have been seeking help for a very long time. It is common for them to have diagnoses of ADHD, anxiety, OCD, depression, and others, with their autistic traits/​behaviors attributed to these prior diagnoses. This is why it is critical to take a big picture approach to understanding these individuals. • Assumptions. One of the most common assumptions is, “If she was autistic, someone else would have diagnosed it by now.” As we will discuss shortly, there is an entire lost generation of autistic adults. As clients age, the assumption that autism is always identified in early childhood becomes a bigger and bigger obstacle to diagnosis. Even when clinicians do consider autism in their differential for adolescents and adults, they are often hesitant to diagnose when prior clinicians did not. Another common assumption is that a prior rule-​out of autism was valid. We should not just accept a prior rule-​out as correct. Rather, we need to ensure that the possibility was fully explored and was ruled out for valid reasons. • Too much reliance on standardized assessment tools. The weaknesses in our assessment instruments would not be such a big problem if clinicians didn’t rely on them so heavily, a factor that is

Introduction  19

especially problematic because so many of these tests are not as sensitive with autistics who camouflage. This over-​reliance on standardized assessment instruments is also problematic, though, because it makes clinicians who don’t test (i.e., therapists) feel that they cannot reliably diagnose, which forces their clients to seek out independent neuropsychological testing or other inaccessible ways of getting diagnostic clarity. If I had to choose between interviewing and tests, I’d choose interviews every time! In addition to over-​relying on tests in general, we as a field over-​rely on one test in particular (which I know, because I don’t even need to name the test here for you to know which one it is!) There is no one “gold standard” test for autism. • Ruling out autism because of “non-​autistic” traits or behaviors. We cannot and should not rule out autism simply because the client has some traits or behaviors that we code as “non-​ autistic.” Countless autistics have been told that they can’t be autistic because they have “good” eye contact, have a good sense of humor, have friends, are successful in their careers, are socially motivated, are athletic, or are likable and engaging. None of these is a reason to rule out autism if the individual meets the diagnostic criteria. After all, someone can feel peaceful at times and still have an anxiety disorder, right? • Over-​relying on our own experience of the client. I have noticed time and time again that clinicians tend to over-​rely on their experience of a client in their office. This is based on an underlying belief that “I’ll just know if they’re autistic.” I encourage you to fight this false belief, because it will be ineffective with clients who camouflage. Rather, we need to understand what that client is like in different situations (e.g., work, school, social events, groups versus one-​on-​one) and we need to strive to understand the client’s subjective experience.

Connecting culture There is growing attention to the influence of cultural factors in the diagnosis of autism. Though there has historically been limited diversity within autism research, we are learning that the diagnosis is

20  Introduction

influenced by factors such as race, ethnicity, cultural background, and socioeconomic status. Recent studies have revealed pertinent issues linked to the diagnosis of children from ethnic minority backgrounds and/​or low socioeconomic status, including delays in the timing of their autism diagnosis, underdiagnosis of autism and co-​occurring diagnoses (such as language delays), and higher instances of misdiagnosis. Researchers, such as John Constantino, Matthew Maenner, and their colleagues, have found that, compared to White children, youth from ethnic/​minority backgrounds had more developmental delays, greater intellectual disability, more behavior problems, and/​or more autistic traits before they were identified as autistic. These authors and others, such as Heejoo Jo and her colleagues, have noted related findings, including lower diagnosis rates for Black children compared to White children, even when they have comparable autistic traits. This points to the risk of underdiagnosis of autism in Black youth, particularly those with average to above-​average intellectual functioning. These challenges are further complicated by the tendency of families and practitioners to misinterpret autistic behaviors and traits, and by the role that bias plays in the diagnosis. These topics will be discussed further in later chapters. Autistic individuals are often described as struggling with context blindness. However, Jamell points out that it is often clinicians who suffer from context blindness when taking (or not taking) their client’s cultural experience into account. The American anthropologist Edward T. Hall developed the concept of cultural context. This provides a framework for understanding communication from a cultural perspective, characterizing cultures as high-​or low-​context. Communication in high-​context cultures tends to be implicit, indirect, and intuitive. In high-​context cultures, speakers assume that their listeners have the pertinent background information. They use more nonverbal communication (gestures, facial expressions, voice inflection, posture, etc.), and they consider the social context of the situation (roles, hierarchies, setting, etc.). In contrast, low-​context cultures communicate explicitly and rely heavily on spoken language (as opposed to nonverbals), with less embedded context in the exchange. In low-​context cultures,

Introduction  21

communication must be clear, literal, and detailed. Speakers emphasize the main points and state expectations explicitly. Cultures and their associated countries are often classified as falling within one of these two domains. For example Japan, China, Korea, Arab countries, France, Spain, and many South American and African countries are often described as high-​context cultures, whereas the United States, Australia, the United Kingdom, Germany, and Nordic countries are low-​context cultures. Of course, the distinction is not binary. Rather, a given culture can have aspects of both high-​and low-​ context communication. Furthermore, each person is unique and may not exhibit the characteristics of the context profile often associated with their identified cultural background. Even in sameness, there is difference! Thus, when a client seems to need more explicit context than you deem necessary, it is important that you understand the cultural expectations regarding contextual cuing for that person, in their community. The bottom line is: Don’t assume. ASK!

Key points for clinicians As you read this book, please bear the following in mind. Autism is far more prevalent than previously believed. As our understanding of autism has evolved, prevalence rates have dramatically increased. The first estimate of the prevalence of autism was about 1 in every 2,222 children in 1966. That number has steadily increased through the past four decades: 1 in 667 in 1979, 1 in 150 in 2000, 1 in 59 in 2018, 1 in 54 just a few years ago, and, as I am writing this book, 1 in 36! And even this may be an underestimate. For instance, Young Shin Kim and colleagues found that two-​thirds of 7-​to 12-​year-​ old autistic students in regular classrooms were undiagnosed. Similarly, as Theresa Regan points out, Lisa Wiggins and her colleagues found that 25% of students in their 8-​year-​old sample had strong indicators of autism but were not diagnosed, and the ones without intellectual disability were more likely to be missed. Similarly, two independent studies, both published around the same time in 2018, estimated that one in 40 children is autistic, and one of these studies suggested that about 30% of those children were not yet diagnosed.

22  Introduction

Undiagnosed autism is even more prevalent in clinical populations. Recent research shows that the prevalence of autism in clinical populations (especially those with mental health conditions) is higher than in the general population, roughly one in five or more! As of this writing, high rates of previously undetected autism have been found in general psychiatric outpatients, as well as those with eating disorders, substance abuse, and depression, as well as those who have died by suicide. For instance, in 2022 Johan Nyrenius and his colleagues assessed adults who came to a general outpatient psychiatric clinic (excluding those who had primary psychosis or substance abuse issues). The authors found that at least 18.9% of those adults were actually autistic, even though only 0.53% had been previously diagnosed. This is comparable to the prevalence of autism in eating-​disordered populations (e.g., as noted by Vanessa Huke and her colleagues) and in depressed populations (e.g., as noted by Kiyoharu Takara and Tsuyoshi Kondo). Similarly, James McKowen and his colleagues found that 20% of patients seeking treatment for substance use had clinically elevated autistic traits; they recommended that substance use treatment settings assess for autism in their clients. Shockingly, Sarah Cassidy and her colleagues found significantly elevated rates of autistic traits in nearly 41% of those who have died by suicide, consistent with prior research indicating that autistic individuals are at a much higher risk of suicide. These studies generally found that many, if not most, adults with significant autistic traits in the population in question had never been formally identified as autistic. It is clear that autism is even more prevalent in mental healthcare settings than previously thought, and that treatment should involve addressing the challenges that come with being autistic. Autism affects as many adults as children. Historically, prevalence studies have focused on children, but we now know that the prevalence of autism in adults is comparable. This makes sense, as autism does not simply disappear when children grow up, though the behavioral manifestations may become less noticeable to others. Meng-​Chuan Lai and Simon Baron-​Cohen’s phrase, the lost generation of autistic adults, refers to the countless adults who are only now recognizing autism in themselves, often after their children have been diagnosed. As Johan Nyrenius and his colleagues noted, autistic individuals

Introduction  23

born prior to the mid-​1990s are far less likely to have received a diagnosis before the age of 18, compared to those born after the year 2000. In line with this, Hjördis Atladottir and colleagues found that autism diagnoses were more than four times more common (in four different countries) in individuals born between 1999 and 2001, compared to individuals born ten years earlier. Similarly, Lisa Croen and her colleagues analyzed data from almost 1.6 million adult Kaiser patients and found that only 1,507 had been diagnosed with autism. That is only 0.095%, less than 0.1% of the sampled population. If the current prevalence estimate of 2.27% is correct, about 36,320 of those Kaiser adults should have been diagnosed with autism. Roughly speaking, in that group alone, there were possibly 34,813 autistic adults who did not know that they were autistic, far more than the 1,507 who were diagnosed! Traolach Brugha and colleagues found that while the rate of autism was steady across age groups, the rate of diagnosis was not. As John Elder Robison observed about that study, “the older the study participant, the less likely they were to have been previously diagnosed with autism.” Robison’s interpretation of the data led him to suggest that only 3–​10% of autistic adults are actually diagnosed as such. Indeed, prior to 1980, the DSM still associated autism with schizophrenia. Autism did not appear in the DSM on its own until 1980, when Infantile Autism first appeared in the DSM-​III. However, the criteria were quite stringent (e.g., symptoms had to appear before 30 months of age with gross distortions or deficits in language development). The name and criteria were updated to Autistic Disorder in the DSM-​III-​R in 1987, but it wasn’t until the DSM-​IV in 1994, with the inclusion of Asperger’s and PDD-​NOS, that individuals with less obvious or less disabling presentations were formally recognized. Thus, now-​adult clients who were seen before 1994 were particularly vulnerable to have been missed. This problem persists at least in part because so many healthcare professionals who work with adults have not been trained to recognize autism. For instance, in Ousseney Zerbo and colleagues’ survey of almost 1,000 adult healthcare providers, most (over 86%) reported that they lacked the knowledge and skills to treat autistic adults, and many were not even aware that they had autistic patients. By the time someone reaches adulthood, there are simply fewer opportunities for proper diagnosis, not to mention the increased misdiagnosis of conditions like

24  Introduction

personality disorders, as you will read in the chapter on differentiating autism from other diagnoses. We are not “all a little bit autistic.” A more accurate statement is that many people have one or more traits in common with autistics. For example, many ADHDers have sensory processing differences, some people with social anxiety have trouble with eye contact, and many non-​autistic people may also have difficulty with change or transitions. Having one or two traits is not the same as being “a little bit autistic.” As my (wAutistic) friend Andrew says, “You can have swollen ankles and not be pregnant!” General principles for social cognition evaluations Diagnosis is empowering! I have known far too many clinicians who –​either overtly or subconsciously –​think of autism as categorically bad. This mindset, and the anxiety that comes with it, makes clinicians less likely to diagnose or even consider the possibility of autism. In my clinical experience, getting a proper diagnosis of autism, particularly when it is conveyed in a neurodiversity-​affirmative manner, is a very positive and even life-​changing experience. Some of the benefits are concrete, such as having access to supports, accommodations, and appropriate intervention. Other benefits are less tangible but can be even more powerful. These include protection from inaccurate or pejorative labels (e.g., “difficult,” “overly sensitive,” personality disorder diagnoses), a sense of community with other people who share the neurotype, and greater understanding from their family, educators, and healthcare professionals. In my opinion, the most powerful benefit of proper diagnosis of autism is the gift of nonjudgmental self-​understanding. Only an accurate and neurodiversity-​ affirmative self-​ understanding can free an individual from a lifetime of self-​blame and shame. Countless autistic individuals have beautifully expressed the freedom and validation they felt when they were finally recognized as autistic. For many, understanding themselves through this lens has enabled them to experience less emotional distress, engage in better self-​care, feel a sense of community, and advocate more effectively for their needs. As Elizabeth Pellicano and Jacquiline den Houting noted, “a positive sense of autistic identity is also associated with better mental health.”

Introduction  25

Internal experience is key. The DSM and ICD criteria for autism are based on observable behaviors. While these are important, it is at least as important, if not more so, to understand and consider an individual’s inner experience, especially where there is considerable masking. Remember, the core of autism is not the observed behaviors, but the experiences that drive those behaviors (e.g., sensory overwhelm leading to stimming). Whenever possible, we need to prioritize subjective experience in the diagnostic process. As Meng-​Chuan Lai and Peter Szatmari have stated, “It is crucial that you understand the subjective experiences and insights of the individuals themselves.” The law of parsimony is a helpful guide. The law of parsimony, also referred to as Occam’s Razor, suggests that when there are competing theories, the simplest explanation is preferred. As Vincent Lo Re and Lisa Bellini summarized, this principle “holds that if a single unifying explanation can be found for multiple symptoms and problems, then it is likely that the correct explanation lies in the simplest account.”

Clinical conceptualization Big picture versus symptom-​by-​symptom* Mrs. McGinley has five symptoms –​increased hunger, increased thirst, fatigue, frequent urination, and tingling in her hands and feet. She seeks treatment from two different physicians. Doctor Donaghy attributes each symptom to something different. The increased hunger is due to Mrs. McGinley’s high stress level, her increased thirst results from not drinking enough water, and her fatigue occurs because she doesn’t exercise enough and is slightly overweight. Doctor Donaghy refers her to a nutritionist and a psychotherapist for these issues. Mrs. McGinley’s increased urination is attributed to her being post-​menopausal, but she gets referred to a urologist to rule out other causes. Mrs. McGinley is also referred to a neurologist due to the tingling in her extremities. Mrs. McGinley leaves the appointment with four separate referrals, to three clinicians who are likely to only see one small part of the big picture. Moreover, she feels a bit blamed for some of her symptoms. In contrast, Doctor Lemon looks at the big picture and suspects that Mrs. McGinley is diabetic. After inquiring, she learns that Mrs. McGinley has a strong family history of diabetes. Doctor Lemon will complete some

26  Introduction

basic lab tests and will continue to treat Mrs. McGinley herself, looking at the whole person, rather than making multiple referrals. * This example is simply making a point about seeing presenting concerns in the context of the whole person; I am not likening autism to a disease like diabetes.

Applying the law of parsimony is not a new concept for autism diagnosis. For example, Susanne Duvall and her colleagues noted that, “Because of the overlap in symptoms across diagnoses, it is not unusual for an individual with [autism] to be misdiagnosed with multiple disorders rather than [autism]. A concept that may be helpful in clarifying the assessment in these cases is the notion of parsimony… it may be worth reassessing the constellation of symptoms and considering if [autism] is a more overarching, accurate and parsimonious diagnosis.” Unfortunately, clinicians regularly ignore this consideration when it comes to autism. As I have observed in clinical practice (and as suggested by Yvette Hus and Osnat Segal), people with a complex presentation are likely to see different professionals for each symptom and may accrue many diagnoses, without anyone considering a single primary diagnosis that connects all of the dots. The takeaway point for clinicians is to collect detailed information about your client, then focus less on the details and more on the big picture. A good social cognition evaluation includes multiple sources of data. The key is to look for convergent validity from multiple sources. In addition to the client and collateral interviews, discussed in subsequent chapters, helpful sources of data include a record review, rating scales, self-​report measures, social cognition testing, and direct behavioral observations. Consideration of many sources of data is particularly important in the evaluation of individuals with a less obvious presentation of autism, as they may be masking their autistic traits so that observations from any single source may be unreliable. For instance: • The individuals themselves may not be fully aware of their social disconnect. I have spoken to many kids and teens who name their best friend and tell us quite a lot about this friend, making a convincing case for a close, reciprocal relationship. However, I may then

Introduction  27

hear from the parents that their child has never gotten together with this friend outside of school or even talked or texted with them, and the teacher may say, “No, [so-​and-​so] has many friends and is very nice to [your client], but they are not really friends.” • Autism is highly heritable (ranging from 37% to over 90%, according to Heloise Young and colleagues). However, because of the “lost generation of autistic adults,” your client’s parents (or other family members) may unknowingly be autistic themselves. This would likely affect their frame of reference for what constitutes n ­ on-​autistic behavior. As such, a parent may have little or no concern about behaviors that are in fact quite relevant. Whether or not the parents are autistic, if the child in question is a firstborn or only child, the parents may have little basis for comparison to help them understand a non-​autistic course of development. • Teachers may not notice anything, particularly if the child is academically capable, has good hygiene, and does not exhibit behavioral problems. Many of these children camouflage or otherwise fly under the radar during the school day. • Unless they are providing group therapy, psychiatrists and therapists only interact with their clients within a structured, one-​on-​ one environment, where symptoms may be less evident. Moreover, mental health professionals are (presumably) particularly good at meeting people more than halfway to make a connection. Under these conditions, autistic traits and symptoms may not show themselves during sessions. • Social cognition tests are not particularly sensitive with this population. There are many reasons for this; for example, most of these tests are not timed (when real-​life situations often happen quickly) and require the client to consider only one thing at a time (while in real life we must constantly integrate multiple aspects of both verbal and nonverbal communication). For all of these reasons and more, it is essential to weave together many sources of information rather than relying too strongly on any single source. I agree with Meng-​Chuan Lai and Peter Szatmari who say, “In-​depth understanding of the individual’s behavior across contacts

28  Introduction

and from multiple sources, instead of solely relying on a cross sectional assessment and score threshold on the ‘gold standard’ measures, is key to achieving sex and gender sensitive clinical recognition of autism.” Data is not limited to test scores. As clinicians, we rely on and prioritize data to draw conclusions. We wouldn’t diagnose a Reading Disorder or ADHD without data, and we should treat autism the same way. But data is information, and information comes in many forms. Test scores and rating scale results are data, but so are the examples you glean from the client and the collateral interviews, as well as what you notice in your interactions with the client. If the client tells you they spend a lot of time and energy trying to figure out what to do with their arms during small talk, that is data. If the client’s spouse tells you that she has to remind him to respond to greetings, that is data. If you notice that the client’s affect never changes, even when talking about painful topics, that is data. When collecting data, I emphasize interviewing and observations. In our clinical experience with potentially autistic clients, we glean the richest and most relevant data from client and collateral interviews as well as from our nuanced observations of the client. I place a lower emphasis on rating scales, self-​report measures, and social cognition tests. This is one reason why I feel strongly that a variety of mental health professionals –​not just testing psychologists –​are capable of assessing autism. Cutoff scores or standard scores don’t tell you whether or not criteria are met. Scores from rating scales and social cognition tests can certainly be helpful, but they don’t offer definitive answers to the question of whether an individual is autistic. If a person scores 14 points on a given scale, but 15 is considered to be the cutoff score, does that mean that the person does not meet criteria for autism? No. Similarly, if a person scores 16 on that scale, it doesn’t necessarily mean that they are autistic. The data that we gather from these instruments must be integrated with the many other sources of information that we access during the course of the assessment, and then considered in the context of the diagnostic criteria for autism. Autism assessment is not just for pediatric clinicians. As Sandra Strunz and her colleagues have noted, many individuals, particularly those without intellectual impairment, are often diagnosed later in life, well into adulthood. This can be particularly challenging,

Introduction  29

because (a) they have often learned sophisticated masking techniques, and (b) the adult-​trained clinicians involved often have less experience with autism, and they may simply assume that, if their client were autistic, they would have been diagnosed by now. Moreover, as Stephen Pilling and his colleagues have noted, autism in adults can easily be misunderstood as depression, personality disorders, or other diagnoses (that may or may not be present, but which should not be substitutes for an autism diagnosis). The diagnostic process should be systematic and data-​ driven. Far too often, clinicians rely on general impressions and clinical intuition when considering the possibility of an autism diagnosis, rather than moving through a systematic evaluation process. This can result in underdiagnosis, particularly with regard to people who have a less stereotypical presentation of autism. With many, if not most, of these individuals, clinicians won’t just know based on interactions in the office. There is no single correct way to do a social cognition ­assessment. There is no best or “gold standard” test, rating scale, or interview. Each option has its own strengths and weaknesses. Of particular concern in this regard are two instruments, the ADOS-​2 and the ADI-​R, that are frequently referred to as the “gold standard” of autism diagnosis. This term is not used with any other measure in psychological testing, and it is not clear how this phrase came to be associated with these measures. To be clear, I do not object to these measures themselves, but to the idea that they represent a single “gold standard” for diagnosis, particularly when it comes to people who camouflage well. It can take a great deal of time and energy to uncover the autistic traits that affect these individuals, and they are less likely to be evident in a semi-​structured, one-​on-​one setting. It is deeply concerning that some insurance companies, school systems, the public, and even many clinicians have bought into the false belief that only these two measures can accurately identify autism. There are many unsettling stories about individuals who are denied support, services, or reimbursement simply because these measures were not used in an assessment, or because a certain score was not achieved. Just as concerning is the effect that this shared delusion has on clinicians. I have spoken to many qualified and talented clinicians who mistakenly believe that they cannot and should not do autism assessments, simply because they have not been trained to administer the ADOS. In

30  Introduction

this book, you will learn that clinicians do not need to go through this training in order to do excellent autism assessments. Similarly, the method described in this book is not the only or best approach. This book is informed by research but based primarily on my clinical experience. The methods discussed here are those that I –​and those whom I have trained –​have found to be efficient and effective in identifying individuals with average to above-​average intellectual and verbal functioning who may have a less obvious presentation of autism. This approach is one of many effective methods, and I invite readers to adopt the strategies that resonate with them. We need to do better. Having undiagnosed autism is not a rare phenomenon; current data suggest that nearly one-​fifth of people who present in a mental health clinical setting may have autism, which may be contributing to their presenting concerns. These individuals are at particularly high risk for co-​occurring challenges, and they are regularly misunderstood, misdiagnosed, and marginalized. Recognition of their autism is central, if not essential, for their well-​being. It is not reasonable to send all of these clients to autism specialists or clinics for diagnosis. These specialists are expensive and/​or have long waiting lists (months to years). This makes identification and intervention even less accessible. It is also questionable for providers to categorically refer this minority group out of their practice. Susanne Duvall and her colleagues noted that “neuropsychologists in all clinical settings should be able to effectively screen for and/​or diagnose [autism], even when its presentation is subtler and/​or when symptoms are masked by clients’ strengths in a way that makes their clinical presentation less obvious.” I agree and would go farther to suggest that other mental health providers should be able to do this as well (within the limits of their scope of practice). We need to work together to make it easier for clients to get an accurate diagnosis. To the clinicians who are already adept at this work, I encourage you to share the responsibility of autism diagnosis, to mentor and train other professionals in your community, and to release the untapped capacity of professionals who can contribute to the process. We have to consider new approaches to evaluation that do not rely unduly on specialists or expensive tests. We need to find a balance between comprehensiveness and accessibility.

Introduction  31

To the clinicians who are new to working with autistic clients, I encourage you to allow yourself the privilege of an open mind, to face your feelings of intimidation, and to explore what it means for a client to be autistic. Not only is this essential in your clinical practice, I also believe you will enjoy your work with these clients. Let your curiosity guide and inspire you. We need to do better, not only for the well-​being of each individual in our office, but because those of us working in this field can and should influence the public’s perception of autism. We can help educate the public, reduce stigma, and create a more neurodiversity-​affirmative world. Simply put, more clinicians and educators must become competent and comfortable recognizing, understanding, and supporting people with less obvious presentations of autism. This book will show you how. From the experts: Reflections on being diagnosed

“My life didn’t make sense or come into focus until my later-​in-​life ASD diagnosis. Just like school, there is textbook and then there is reality. Imagine how we can impact people’s lives for the better if we stopped checking boxes and really looked at how different Autistic people present in real life.” –​Dolly Ferraiuolo, LCSW



“Different from the current meaning of the autism puzzle piece, I have felt like the missing piece in my life was not knowing I am autistic. Getting diagnosed as an adult felt like finding that piece and finally seeing the full picture of my life, making room for self-​compassion and understanding.” –​Reanna P.



“I cried from relief when she said autism. I never thought I could be autistic, but I knew I was different from others and not sure why or how to articulate that. It made a lot of sense to me.” –​DJ Chopstick

“I am a lot more aware of my own needs and how to address them, now that I know that I am autistic. I am also much more forgiving of myself, now that I know that the things that I had always blamed myself for and felt shame over not being able to control are not flaws but are a result of my neurodivergence, which is not something that I should be ashamed of. I like myself a lot more and I feel like I know who I am a lot better. I am much more comfortable with

32  Introduction

the person that I am and the things that I do. Overall I am much much happier and much more aware of myself, my brain, my emotions, and my body, much more capable of taking care of myself and my needs, and I like myself much more.” –​Annie R.

“I’ve come to recognize myself. I’ve come to realize that I am Autistic, that my sensory system takes in a whole lot more information than a ‘typical’ sensory system, that I am constantly processing more information than others, and that living in this neurotypical culture takes a lot more energy out of me than it does others. As I’ve learned about Autism and about myself, I’ve begun to make shifts in my life and, to my surprise and joy, I’m not constantly exhausted anymore. It was as if the history of my life and experiences slotted into place and, rather than me being a bit off or wrong all the time, I realized that I was just operating in a different way than others and than I was expected to. Having this knowledge has allowed me to live more authentically and use less energy on a daily basis.” –​Jennifer Glacel



“Being formally diagnosed as autistic helped me to stop wondering what was wrong with me, and start moving towards who I could be. It’s just a label. But having the right label helped me to put the past in context, and to manage my present and future more effectively.” –​Drew R.



“As a multiply marginalized person, with many intersections of my identity being oppressed, outside of my Blackness, discovering I’m autistic was the last and most significant root of all that I am. I met the totality of me for the first time and decided to show up fully in this world.” –​Asiatu Lawoyin



“My diagnosis has given me a new lens to see myself and how I interact with the world. Previously I felt that there was something innately lacking in me; that I was missing fundamental human emotions. With autism as a new lens to see myself, I recognize all the ways in which I do feel, and all the ways in which I do find connection with others. While the diagnosis hasn’t directly changed my life, it has allowed me to better understand myself and to make meaning from my own experiences.” –​Marc J.

Introduction  33

References and related reading American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://​doi.org/​10.1176/​appi.books.978089​ 0425​787 Atladottir, H. O., Gyllenberg, D., Langridge, A., Sandin, S., Hansen, S. N., Leonard, H., Gissler, M., Reichenberg, A., Schendel, D. E., Bourke, J., Hultman, C. M., Grice, D. E., Buxbaum, J. D., & Parner, E. T. (2015). The increasing prevalence of reported diagnoses of childhood psychiatric disorders: A descriptive multinational comparison. European Child and Adolescent Psychiatry, 24(2), 173–​183. Autism Science Foundation. (2021, December 2). Autism Science Foundation comments on today’s CDC data indicating 1 in 44 children diagnosed with autism. Autism Science Foundation. https://​auti​smsc​ienc​efou​ndat​ion.org/​aut​ism-​scie​ nce-​fou​ndat​ion-​comme​nts-​on-​tod​ays-​cdc-​data-​ind​icat​ing-​1-​in-​44-​child​ren-​ diagno​sed-​with-​aut​ism/​ Autism Science Foundation. (2021, December 16). The year in review, 2021. ASF Blog. https://​auti​smsc​ienc​efou​ndat​ion.wordpr​ess.com/​2021/​12/​16/​ the-​year-​in-​rev​iew-​2021/​ Baio, J. (2014, March 28). Prevalence of autism spectrum disorder among children aged 8 years —​Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2010. Centers for Disease Control and Prevention. https://​sta​cks.cdc. gov/​view/​cdc/​22182 Baird, G., Simonoff, E., Pickles, A., Chandler, S., Loucas, T., Meldrum, D., & Charman, T. (2006). Prevalence of disorders of the autism spectrum in a population cohort of children in South Thames: The Special Needs and Autism Project (SNAP). Lancet, 368(9531), 210–​215. https://​doi.org/​ 10.1016/​S0140-​6736(06)69041-​7 Bargiela, S., Steward, R., & Mandy, W. (2016). The experiences of late-​ diagnosed women with autism spectrum conditions: An investigation of the female autism phenotype. Journal of Autism and Developmental Disorders, 46(10), 3281–​3294. https://​doi.org/​10.1007/​s10​803-​016-​2872-​8 Barnard, J., Harvey, V., Potter, D., & National Autistic Society. (2001). Ignored or ineligible?: The reality for adults with autism spectrum disorders. National Autistic Society. Baron-​Cohen, S. (2019, April 30). The concept of neurodiversity is dividing the autism community. Scientific American Blog Network. https://​blogs.sci​enti​ fica​meri​can.com/​obser​vati​ons/​the-​conc​ept-​of-​neu​rodi​vers​ity-​is-​divid​ing-​ the-​aut​ism-​commun​ity/​ Bastiaansen, J. A., Meffert, H., Hein, S., Huizinga, P., Ketelaars, C., Pijnenborg, M., Bartels, A., Minderaa, R, Keysers, C., & de Bildt, A. (2010) Diagnosing autism spectrum disorders in adults: The use of Autism Diagnostic

34  Introduction

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40  Introduction

Mandell, D. S., Wiggins, L. D., Carpenter, L. A., Daniels, J., DiGuiseppi, C., Durkin, M. S., Giarelli, E., Morrier, M. J., Nicholas, J. S., Pinto-​Martin, J. A., Shattuck, P. T., Thomas, K. C., Yeargin-​Allsopp, M., & Kirby, R. S. (2009). Racial/​ethnic disparities in the identification of children with autism spectrum disorders. American Journal of Public Health, 99(3), 493–​498. https://​doi. org/​10.2105/​AJPH.2007.131​243 Mandy, W., Chilvers, R., Chowdhury, U., Salter, G., Seigal, A., & Skuse, D. (2012). Sex differences in autism spectrum disorder: Evidence from a large sample of children and adolescents. Journal of Autism and Developmental Disorders, 42(7), 1304–​1313. https://​doi.org/​10.1007/​s10​803-​011-​1356-​0 McDonnell, C. G., DeLucia, E. A., Hayden, E. P., Penner, M., Curcin, K., Anagnostou, E., Nicolson, R., Kelley, E., Georgiades, S., Liu, X., & Stevenson, R. A. (2021). Sex differences in age of diagnosis and first concern among children with autism spectrum disorder. Journal of Clinical Child & Adolescent Psychology, 50(5), 645–​655. https://​doi.org/​10.1080/​15374​ 416.2020.1823​850 McKowen, J., Woodward, D., Yule, A. M., DiSalvo, M., Rao, V., Greenbaum, J., Joshi, G., & Wilens, T. E. (2022). Characterizing autistic traits in treatment-​ seeking young adults with substance use disorders. The American Journal on Addictions, 31(2), 108–​114. https://​doi.org/​10.1111/​ajad.13247 Meyer, I. H., & Frost, D. M. (2013). Minority stress and the health of sexual minorities. In C. J. Patterson & A. R. D’Augelli (Eds.), Handbook of psychology and sexual orientation (pp. 252–​266). Oxford University Press. Moens, J. (2021, December 1). Autism without intellectual impairments more common than previously reported. Spectrum News. www.spect​rumn​ews.org/​news/​aut​ism-​ with​out-​intel​lect​ual-​impa​irme​nts-​more-​com​mon-​than-​pre​viou​sly-​repor​ted/​ National Autistic Society. (n.d.). The history of autism. National Autistic Society. www.aut​ism.org.uk/​adv​ice-​and-​guida​nce/​what-​is-​aut​ism/​the-​hist​ory-​of-​ aut​ism. Nevison, C., & Zahorodny, W. (2019). Race/​ethnicity-​resolved time trends in United States ASD prevalence estimates from IDEA and ADDM. Journal of Autism and Developmental Disorders, 49(12), 4721–​4730. https://​doi.org/​ 10.1007/​s10​803-​019-​04188-​6 Neuliep, J. W. (2020). Intercultural communication (8th ed.). SAGE Publications Inc. Norbury, C. F., & Sparks, A. (2013). Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Developmental Psychology, 49(1), 45–​58. https://​doi.org/​10.1037/​a0027​446 Nyrenius, J., Eberhard, J., Ghaziuddin, M., Gillberg, C., & Billstedt, E. (2022). Prevalence of autism spectrum disorders in adult outpatient psychiatry. Journal of Autism and Developmental Disorders, 52(7), 3769–​3779. https://​doi. org/​10.1007/​s10​803-​021-​05411-​z

Introduction  41 Organization for Autism Research. (2019, January 3). New studies estimate autism prevalence at 1 in 40. Organization for Autism Research. https://​res​earc​haut​ ism.org/​new-​stud​ies-​estim​ate-​aut​ism-​pre​vale​nce-​at-​1-​in-​40/​ Pearson, A., & Rose, K. (2021). A conceptual analysis of autistic masking: Understanding the narrative of stigma and the illusion of choice. Autism in Adulthood, 3(1), 52–​60. https://​doi.org/​10.1089/​aut.2020.0043 Pellicano, E., & den Houting, J. (n.d.). Annual research review: Shifting from ‘normal science’ to neurodiversity in autism science. Journal of Child Psychology and Psychiatry. https://​doi.org/​10.1111/​jcpp.13534 Penner, M., Anagnostou, E., Andoni, L. Y., & Ungar, W. J. (2018). Systematic review of clinical guidance documents for autism spectrum disorder diagnostic assessment in select regions. Autism, 22(5), 517–​527. https://​doi.org/​ 10.1177/​13623​6131​6685​879 Pilling, S., Baron-​Cohen, S., Megnin-​Viggars, O., Lee, R., Taylor, C., & on behalf of the guideline development group. (2012). Recognition, referral, diagnosis, and management of adults with autism: Summary of NICE guidance. BMJ, 344, e4082. https://​doi.org/​10.1136/​bmj.e4082 Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-​Brown, K., Martin, A., & Anthony, L. G. (2018). What about the girls? Sex-​based differences in autistic traits and adaptive skills. Journal of Autism and Developmental Disorders, 48(5), 1698–​1711. https://​doi. org/​10.1007/​s10​803-​017-​3413-​9 Regan, T. (2021). Understanding autism in adults and aging adults 2nd edition: Updated in 2021 with new insights for improving diagnosis and quality of life (J. Angelo, Ed.; 2nd ed.). Indiego Publishing LLC. Reinberg, S. (2018, December 3). Another tally puts autism cases at 1 in 40. HealthDay. https://​consu​mer.health​day.com/​cognit​ive-​hea​lth-​info​r mat​ ion-​26/​aut​ism-​news-​51/​anot​her-​tally-​puts-​aut​ism-​cases-​at-​1-​in-​40-​740​ 230.html Robinson, E. B., Samocha, K. E., Kosmicki, J. A., McGrath, L., Neale, B. M., Perlis, R. H., & Daly, M. J. (2014). Autism spectrum disorder severity reflects the average contribution of de novo and familial influences. Proceedings of the National Academy of Sciences, 111(42), 15161–​15165. https://​doi.org/​ 10.1073/​pnas.140​9204​111 Robison, J. E. (2019). Autism prevalence and outcomes in older adults: Autism prevalence and outcomes. Autism Research, 12(3), 370–​374. https://​doi.org/​ 10.1002/​aur.2080 Roman-​Urrestarazu, A., van Kessel, R., Allison, C., Matthews, F. E., Brayne, C., & Baron-​Cohen, S. (2021). Association of race/​ethnicity and social

42  Introduction

disadvantage with autism prevalence in 7 million school children in England. JAMA Pediatrics, 175(6), e210054. https://​doi.org/​10.1001/​jam​aped​iatr​ ics.2021.0054 Russo, F. (2018, February 21). The costs of camouflaging autism. Spectrum News. www.spect​rumn​ews.org/​featu​res/​deep-​dive/​costs-​camou​flag​ing-​aut​ism/​ Rutherford, M., McKenzie, K., Johnson, T., Catchpole, C., O’Hare, A., McClure, I., Forsyth, K., McCartney, D., & Murray, A. (2016). Gender ratio in a clinical population sample, age of diagnosis and duration of assessment in children and adults with autism spectrum disorder. Autism: The International Journal of Research and Practice, 20(5), 628–​634. https://​doi.org/​10.1177/​ 13623​6131​5617​879 Santore, L. A., Gerber, A., Gioia, A. N., Bianchi, R., Talledo, F., Peris, T. S., & Lerner, M. D. (2020). Felt but not seen: Observed restricted repetitive behaviors are associated with self-​report —​but not parent-​report —​OCD symptoms in youth with ASD. Autism: The International Journal of Research and Practice, 24(4), 983–​994. https://​doi.org/​10.1177/​13623​6132​0909​177 Shulman, C., Esler, A., Morrier, M. J., & Rice, C. E. (2020). Diagnosis of autism spectrum disorder across the lifespan. Child and Adolescent Psychiatric Clinics of North America, 29(2), 253–​273. https://​doi.org/​10.1016/​ j.chc.2020.01.001 Shulman, C., Rice, C. E., Morrier, M. J., & Esler, A. (2020). The role of diagnostic instruments in dual and differential diagnosis in autism spectrum disorder across the lifespan. Psychiatric Clinics, 43(4), 605–​628. https://​doi.org/​ 10.1016/​j.psc.2020.08.002 Strunz, S., Westphal, L., Ritter, K., Heuser, I., Dziobek, I., & Roepke, S. (2015). Personality pathology of adults with autism spectrum disorder without accompanying intellectual impairment in comparison to adults with personality disorders. Journal of Autism and Developmental Disorders, 45(12), 4026–​ 4038. https://​doi.org/​10.1007/​s10​803-​014-​2183-​x Takara, K., & Kondo, T. (2014). Autism spectrum disorder among first-​visit depressed adult patients: Diagnostic clues from backgrounds and past history. General Hospital Psychiatry, 36(6), 737–​742. https://​doi.org/​10.1016/​j.genho​ spps​ych.2014.08.004 Takara, K., Kondo, T., & Kuba, T. (2015). How and why is autism spectrum disorder misdiagnosed in adult patients? From diagnostic problem to management for adjustment. Mental Health in Family Medicine, 11(2), 73–​88. Tincani, M., Travers, J., & Boutot, A. (2009). Race, culture, and autism spectrum disorder: Understanding the role of diversity in successful educational interventions. Research and Practice for Persons with Severe Disabilities, 34(3–​4), 81–​90. https://​doi.org/​10.2511/​rpsd.34.3-​4.81

Introduction  43 Travers, J. C., Tincani, M., & Krezmien, M. P. (2013). A multiyear national profile of racial disparity in autism identification. The Journal of Special Education, 47(1), 41–​49. https://​doi.org/​10.1177/​00224​6691​1416​247 Watson, L. E. (2014). “Living life in the moment”: Chronic stress and coping among families of high-​functioning adolescent girls with autism spectrum disorder [Doctoral dissertation, Boston College]. https://​citese​erx.ist.psu.edu/​view​doc/​downl​ oad?doi=​10.1.1.874.4587&rep=​rep1&type=​pdf Weingarner, B. (2021, September 3). ‘The battery’s dead’: Burnout looks different in autistic adults. The New York Times. www.nyti​mes.com/​2021/​09/​ 03/​well/​live/​autis​tic-​burn​out-​adv​ice.html Wiggins, L. D., Durkin, M., Esler, A., Lee, L.-​ C., Zahorodny, W., Rice, C., Yeargin-​Allsopp, M., Dowling, N. F., Hall-​Lande, J., Morrier, M. J., Christensen, D., Shenouda, J., & Baio, J. (2020). Disparities in documented diagnoses of autism spectrum disorder based on demographic, individual, and service factors. Autism Research, 13(3), 464–​473. Wright, J. (2015, December 10). Autism’s lost generation. The Atlantic. www. thea​tlan​tic.com/​hea​lth/​arch​ive/​2015/​12/​the-​lost-​adu​lts-​with-​aut​ism/​ 419​511/​ Xu, G., Strathearn, L., Liu, B., & Bao, W. (2018). Prevalence of autism spectrum disorder among US children and adolescents, 2014–​2016. JAMA, 319(1), 81–​82. https://​doi.org/​10.1001/​jama.2017.17812 Young, H., Oreve, M.-​ J., & Speranza, M. (2018). Clinical characteristics and problems diagnosing autism spectrum disorder in girls. Archives De Pediatrie: Organe Officiel De La Societe Francaise De Pediatrie, 25(6), 399–​403. https://​doi.org/​10.1016/​j.arc​ped.2018.06.008 Young, S., Hollingdale, J., Absoud, M., Bolton, P., Branney, P., Colley, W., Craze, E., Dave, M., Deeley, Q., Farrag, E., Gudjonsson, G., Hill, P., Liang, H. L., Murphy, C., Mackintosh, P., Murin, M., O’Regan, F., Ougrin, D., Rios, P., … Woodhouse, E. (2020). Guidance for identification and treatment of individuals with attention deficit/​hyperactivity disorder and autism spectrum disorder based upon expert consensus. BMC Medicine, 18(1), 146. https://​doi.org/​10.1186/​s12​916-​020-​01585-​y Zerbo, O., Massolo, M. L., Qian, Y., & Croen, L. A. (2015). A study of physician knowledge and experience with autism in adults in a large integrated healthcare system. Journal of Autism and Developmental Disorders, 45(12), 4002–​ 4014. https://​doi.org/​10.1007/​s10​803-​015-​2579-​2 Zuckerman, K. E., Lindly, O. J., Reyes, N. M., Chavez, A. E., Macias, K., Smith, K. N., & Reynolds, A. (2017). Disparities in diagnosis and treatment of autism in Latino and non-​Latino White families. Pediatrics, 139(5). https://​ doi.org/​10.1542/​peds.2016-​3010

Chapter 1

Framework The current diagnostic criteria

Before diving into how to do an assessment, it is essential to first orient yourself to the diagnostic criteria as written in the Diagnostic and Statistical Manual of Mental Disorders (DSM-​5-​TR, 2022) and in the International Classification of Disease (ICD-​11, 2019). I want to emphasize that I am aware that these diagnostic criteria represent the perspective that non-​autistic ways of communicating and responding to the world are correct or appropriate and that autistic ways of communicating and responding are incorrect, impaired, inferior, abnormal, inappropriate, or represent failure. I disagree with the use of these words, and in subsequent chapters will strive to offer wording that is more neurodiversity-​ affirmative and, I feel, more appropriate. For this chapter alone, however, I present the criteria as written in the DSM-​5-​TR and in the ICD-​11. I hope that readers understand this context, and understand that words like deficit and symptom are reported below as they are used in the published criteria. A few things to keep in mind: • The DSM-​5-​TR and the ICD-​11 no longer distinguish between autism and Asperger’s. Instead, they collapse autistic disorder, Asperger’s, and pervasive developmental disorder-​ not otherwise specified (PDD-​NOS) into a single diagnosis: “Autism spectrum DOI: 10.4324/9781003403838-2

Framework: The current diagnostic criteria  45

disorder.” Nonetheless, there continue to be individuals who identify strongly with “Asperger’s,” and clinicians are encouraged to use language that feels right for each of their clients. • The features do not need to be current; they can be either current or by history. This is important because some of the criteria (e.g., sensory challenges) are often more evident when people are very young. While parents and some clinicians may think that those features should not contribute to the diagnosis if the child has outgrown them, they still count. In contrast, some criteria might not have been evident early in life but may have become more clear as the child has matured; this is particularly true for autistic females. • When working with children or adolescents, it is essential to remember that young autistic people often interact quite nicely with supportive adults (such as therapists) and that they can also do well with children who are a couple of years older or younger. When assessing their social skills, it is more important to particularly consider their interactions with same-​aged peers, more so than their interactions with people who are significantly older or younger. The criteria are divided into two major groups: (1) Social and communication challenges, and (2) Repetitive and restricted behaviors (RRBs).

Social and communication challenges For clinicians using the DSM-​5-​TR, there are three criteria in this category, and an individual must experience difficulty in all three areas, either currently or historically, in order to qualify for a diagnosis. 1. Social/​emotional reciprocity 2. Nonverbal communication 3. Relationship management For clinicians using the ICD-​11, there generally need to be “persistent deficits in the ability to initiate and to sustain reciprocal social interaction and social communication.”

46  Framework: The current diagnostic criteria

Repetitive and restricted behaviors The DSM-​5-​TR lists four repetitive and restricted behaviors, and individuals only need to meet criteria for two of the four, either currently or by history, in order to qualify for diagnosis. Clinicians using the ICD-​11 need to show that there is “a range of restricted, repetitive, and inflexible patterns of behaviour and interests.” Either way, it is quite possible to be autistic without having repetitive behaviors, or to be autistic without having restricted interests, etc. To meet the DSM-​5-​TR criteria for repetitive and restricted behaviors, only two of the following four criteria must be met. 1. Repetitive or idiosyncratic behavior 2. Difficulty with flexibility 3. Restricted interests that are intense or atypical 4. Sensory differences In the book Is This Autism? A Guide for Clinicians and Everyone Else, my co-​author and I describe each of these criteria in detail and how they can present in people with less obvious presentations of autism. It is critically important that you read that book before proceeding with the diagnostic process outlined in this book. Clinicians must first understand WHAT to look for, before learning HOW to look for it. The prior book reviews the WHAT, while this book discusses the HOW.

Additional criteria Three more criteria must be considered. First, symptoms must be traced back to childhood. The DSM-​5 states that “symptoms must be present in the early developmental period,” and the ICD-​11 states that “the onset of the disorder occurs during the developmental period, typically in early childhood.” However, they both also state that symptoms may not fully manifest until later, “when social demands exceed limited capacities.” The DSM-​5 also adds that symptoms may not be seen at times because they “may be masked by learned strategies.” This all highlights the fact that autism is

Framework: The current diagnostic criteria  47

not something that can begin in adolescence or adulthood. It is important to determine whether the issues were present but manageable early in life. Be careful to avoid assuming that a symptom wasn’t present when the person may have been hiding it from others (camouflaging) or when their environment (their parents, for example) were helping them compensate. Second, a diagnosis of autism spectrum disorder requires evidence of clinically significant impairment in social, occupational, or other important areas of current functioning. This can also include emotional impairment, such as anxiety, depression, or being exhausted when forced to camouflage, with a significant need for recovery time alone. It is common for the presentation to differ depending on context, holding it together when in public and breaking down once at home. Other areas that may be impacted include burnout, school or work avoidance, difficulty launching into adulthood, etc. Clearly, individuals who are seeking either an evaluation or therapy do have clinically significant challenges. Finally, the DSM-​5-​TR specifies that the presentation is “not better explained by intellectual developmental disorder (intellectual disability) or global developmental delay.”

DSM-​5 -​T R and ICD-​1 1 similarities • Autism, Asperger’s, and PDD-​NOS have been collapsed into a single diagnosis: Autism spectrum disorder. • Two categories of criteria: Social/​communication challenges and restricted/​repetitive behaviors. • Both state that autism is present from early in the individual’s development but that symptoms may not fully manifest until later. • Both the DSM and the ICD specify that symptoms cause clinically significant impairment, which can be in any area of functioning (e.g., social, educational, vocational, emotional, etc.). • Neither includes language impairment as a criterion. • Both have been updated to include sensory issues as part of the criteria.

48  Framework: The current diagnostic criteria

DSM-​5 -​T R and ICD-​1 1 differences • The DSM specifies a minimum number of symptoms in each category; i.e., that all three social/​communication criteria and two of the four restricted/​repetitive criteria must be met. In contrast, the ICD does not require a specific threshold of symptoms. Instead, it requires “persistent deficits” in the social/​communication and the repetitive/​restricted domains. • The DSM specifiers include some co-​ occurring disorders (e.g., “with or without accompanying intellectual impairment” and “with or without accompanying language impairment”). In contrast, the ICD has different diagnostic codes for autism, depending on such factors as the presence or absence of intellectual disability and/​or functional language. • The DSM does not include regression as a symptom or basis for diagnosis, while the ICD specifies that “loss of previously acquired skills” can be used as a basis for diagnosis. Please refer to the DSM-​5-​TR for the full diagnostic criteria, and read my other book, Is This Autism? A Guide for Clinicians and Everyone Else, to gain a strong foundation, before reading on to learn how these criteria can be met.

References American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://​doi.org/​10.1176/​appi.books.978089​ 0425​787 Henderson, D., Wayland, S. C., & White, J. (2023). Is this autism? A guide for clinicians and everyone else. Routledge. World Health Organization. (2019). International statistical classification of diseases and related health problems (11th ed.). https://​icd.who.int/​

Chapter 2

Knowing when to consider a social cognition assessment

Dr. Winnow was a very well-​respected psychiatrist who specialized in school refusal. Over many years, she helped dozens, possibly hundreds, of children and their families. Donna attended one of Dr. Winnow’s presentations on school refusal. It was clinically relevant and highly insightful, with many practical tips for clinicians.When discussing co-​occurring conditions associated with school refusal, Dr. Winnow listed anxiety, depression, ADHD, learning disabilities, trauma, sleep deprivation, and more –​indeed, just about everything a child could struggle with. When Donna asked, “What about autism?”, Dr. Winnow responded, “We have had very few kids with autism, almost none, in fact.” Suspecting that Dr.Winnow’s otherwise outstanding practice simply had outdated ideas about autism, Donna provided them with an in-​service training highlighting the less obvious presentations of autism. About halfway through the presentation, the ten or so therapists in the room exclaimed, “So many of our clients are autistic! We had no idea!”

General principles Having any one or even a few autistic behaviors or traits does not necessarily signal autism. Many of our non-​autistic clients have some of these traits. However, if a client has numerous issues on this list, OR if some of these issues are severe, OR if some of these issues are the presenting complaint, OR if some of these issues are unusually persistent or treatment resistant, then it is important to consider the possibility that the client is autistic. DOI: 10.4324/9781003403838-3

50  Knowing when to consider a social cognition assessment

There are times when a clinician is not sure whether or not a more thorough evaluation is needed. In these cases, if time allows, follow through and engage in a deeper evaluation. This will allow you to practice your screening process, and it will give you the opportunity to hone your evaluation skills with more clients. As you practice, your clinical skills will develop, and you will become better able to determine whether or not to explore further. With females especially, even a few of these should be considered very seriously. It is not possible to rule out autism “because she doesn’t seem autistic,” particularly with females who are very bright, hardworking, compliant, and/​or successful in school or work. For clinicians who have had very little experience thinking about autism, I encourage you to at least briefly consider the possibility for each of your clients. While this may seem like overkill, it will help you to break your old misconception that you will instinctively know when a client is autistic, and to develop a new habit of considering the possibility of autism for your clients. After all, you at least briefly consider the possibility of anxiety for all of your clients, right? I assume that you also consider the possibility of trauma, depression, executive functioning difficulties, etc. Consider simply adding autism to your mental list of possibilities for each client. Be careful about your reasons for ruling out autism. Many individuals are told that they cannot be autistic, simply because they demonstrate behaviors or traits that the clinician believes to be incompatible with autism. This can include having typical eye contact, having a great sense of humor, being empathic, having a high level of education, having friends, being in a committed romantic relationship, or being successful in one’s career (to name just a few). Autism cannot and should not be ruled out simply because an individual demonstrates strengths or successes that have traditionally been associated with non-​autistics. Think about pink flags. I love the concept of pink flags, as described by Susanne Duvall and her colleagues. They note that many clinicians look for red flags of autism, such as flapping or an intense interest in train schedules, but that it is also important to pay attention to pink flags. These represent less obvious behaviors and traits that

Knowing when to consider a social cognition assessment  51

are not specific to autism but are signs that the clinician should take a closer look. One or two pink flags are not necessarily significant, but a pattern of pink flags certainly warrants further investigation.

Possible clues Here is a list of clues, organized by general functional categories. Again, these are not specific to autism but are behaviors or traits that may indicate the need for a deeper look at social cognition (otherwise known as “things that make you go hmmm”). Top clues: When you see any of these top clues, know that it is impor­ tant to keep autism on the list of possibilities until proven otherwise. Of course, any of these can be present in non-​autistic individuals, but their presence should particularly alert clinicians to the possibility of autism. • Concerns about social skills or difficulty making or keeping friends. • Significant emotional dysregulation, severe anxiety, a tendency to shut down or melt down frequently (either by self-​report or others’ observations). • Areas of rigidity, such as perfectionism, defiance, school refusal, etc., particularly if they don’t respond to intervention. • Challenges in multiple areas, e.g., sensory input, adaptive functioning, emotion regulation, social, activities, movement, etc. • Significant history of somatic issues, such as gastrointestinal problems, headaches, or pain. • Adaptive functioning is significantly lower than intellectual functioning, e.g., graduated from college but is unable to launch. • The client or parents have been seeking definitive diagnosis and/​ or treatment for many years without finding clarity about the presenting issues, which include language, sensory, motor, anxiety, etc. They may have been given many prior diagnoses but still feel misunderstood.

52  Knowing when to consider a social cognition assessment

Following are clues in specific domains of functioning: Social observations or concerns: • Has difficulty making or keeping friends. • Has difficulty with aspects of nonverbal communication, such as eye contact, gestures, volume, facial expressions, or voice intonation. • Persistently befriends younger/​older kids, quirky kids, or kids of the opposite sex. • Gets on best with adults, likes to talk about facts and topics interesting to adults, and/​or may have a formal or unusually precise manner of speaking, like a “little professor.” • Connects more easily with animals than people. • Experiences a change in friendship situation in middle school when reciprocal conversations and shared interests are more central to relationships. • Is naive or socially immature (may seem unusually mature in some ways but immature in others). • Has difficulty taking other people’s perspectives or showing interest in other people’s responses. • Insists on being in control during play or activities, or in relationships. • Has been bullied or teased across more than one year or setting. As an adult, has been victimized in relationships. • Requires more social coaching than expected, e.g., cues to greet others. • Has low social motivation, e.g., never initiates getting together, is reluctant to do so, or just seems to have low interest. • Has relative difficulty with groups of peers (versus one-​on-​one). • Struggles with unstructured social activities, relative to more structured interactions. • Persistently feels exhausted or overwhelmed by social interactions.

Knowing when to consider a social cognition assessment  53

Behavioral observations or concerns: • Demonstrates behavior that appears to be oppositional, disrespectful, or defiant; the possibility of oppositional defiant disorder (ODD) may have been raised or diagnosed by prior clinicians. • Is viewed as being inflexible, unusually stubborn, or having a one-​ track mind. • Has difficulty regularly attending school (traditionally referred to as school refusal) or keeping a job. • Calls out or makes sounds in class. • Participates only when he/​she/​they really wants to. • Shuts down when faced with difficult or non-​preferred tasks. Emotional observations or concerns: • Struggles with highly persistent or severe anxiety or depression. • Has unusual or multiple phobias. • Experiences meltdowns, shutdowns, or intense or dysregulated emotions. • Has trouble talking about feelings; does not seem to know how they feel. • Experiences distress when there are unexpected changes in plans or when reality doesn’t match their expectations. • Shows intense perfectionism, e.g., a hyper-​focus on academics at the expense of everything else. • The possibility of bipolar disorder and/​or a personality disorder has been raised by a prior clinician. • Selectively mute. It’s especially important to note whether these conditions have not responded well to standard treatment protocols.

54  Knowing when to consider a social cognition assessment

Cognition, language, or academic observations or concerns: • Had early language delays, which may or may not have resolved. • Has difficulty understanding others or expressing themselves clearly. • Can be concrete, takes things very literally. • Has been diagnosed with ADHD, particularly if it is either borderline or severe. • Struggles with executive functioning (that may or may not be attributable to ADHD). • Has extreme reactions to being asked to write something (that is not about a topic of interest). • Shows context blindness, e.g., overly focusing on grammar or a particular word or phrase, rather than the intended meaning. • Has a highly uneven profile, e.g., intellectually gifted but can’t/​ won’t engage in a particular academic activity. • Has hyperlexia, with or without difficulty gleaning the main idea while reading. Medical/​d evelopmental history or concerns: • Unusual sensory responses or sensory-​craving behavior (even if this is no longer an issue). • Has a highly restricted diet, is a picky eater, or is diagnosed with an eating disorder (particularly ARFID). • Has vague motor issues, such as low tone or lack of coordination; they may be clumsy, fall down frequently, or bump into people or objects. • Has a history of chronic gastrointestinal (GI) issues, including constipation, stomachaches, etc., especially if there is no clear cause. • Does not seem to be aware of internal signals; e.g., has meltdowns because they forget or refuse to eat regularly, enuresis or encopresis beyond typical ages.

Knowing when to consider a social cognition assessment  55

• Has a history of frequent headaches, especially if no clear cause. • Shows evidence of physiological dysregulation, such as postural orthostatic tachycardia syndrome (POTS), dysregulated sleep, hypoglycemia, etc. • Experiences chronic pain or an unusually high tolerance for pain. • Has a history of seizures. • Shows signs of a possible genetic disorder, such as dysmorphic facial features or joint hypermobility. Other observations or concerns: • Any unusual motor movements or posturing. • “Superpowers,” such as a remarkable memory, reading at an extremely young age, perfect pitch, or phenomenal math skills. • Particularly poor hygiene or resistance to basic grooming/​hygiene activities, such as bathing, shampooing, or tooth brushing. • Transgender, non-​binary, gender fluid, or agender. • The client has tried intervention (therapy, medication, etc.) but has not made expected progress. Finally, it is important to note that the following are not reasons to rule out autism or to rule out the possible need for a social cognition evaluation: • The individual wants friends. • The individual has friends. • They have a good sense of humor. • They have empathy. • They are affectionate/​loving. • There are no behavioral issues. • They are well educated and/​or highly successful in their career.

56  Knowing when to consider a social cognition assessment

• They were previously evaluated and not diagnosed with autism (unless the report made a very clear and convincing case for why it was ruled out, which in my experience is quite rare).

Frequently asked questions • Is it reasonable for me to consider diagnosing autism if I did not get formal training in autism during my graduate school education? It is not for me to say whether or not an individual clinician should be diagnosing autism in their clients or referring to a specialist. However, assuming you are a licensed professional who is legally able to diagnose in your state, then yes, it is reasonable. Many healthcare professionals (including me) did not receive formal training in recognizing, diagnosing, or treating this population. If you did not receive formal autism training in graduate school, that does not disqualify you from doing this work! However, we are all required to continue to update our learning and clinical expertise, by reading (such as this book), going to presentations, participating in case conferences, and seeking consultation or supervision as appropriate. • Are there times when I should refer my client for an in-​ depth evaluation or to an autism specialist? Yes, for example, if your license does not allow you to diagnose, or if there are complicating factors (e.g., many co-​occurring conditions) and you are not able to make a determination with reasonable confidence. In these cases, consider openly discussing with the client (a) why you think they might be autistic, (b) why it is important for them to get clarity about this, (c) why you are not comfortable making that decision, and (d) exactly what you are recommending. You might also help your client find a neuropsychologist or testing psychologist who has experience working with people who have a less obvious presentation of autism (or is consulting with or being supervised by one). • What if I’m not sure whether a client needs a more thorough evaluation? Many, if not most, psychologists have a screening process to make sure that the referral is appropriate, and these phone calls are typically free. Additionally, some psychologists provide case consultation for therapists who need help deciding if

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they have enough clarity to make a diagnosis themselves or if further evaluation is needed. These professional consultations do often have a charge, but it typically costs far less than a comprehensive neuropsychological evaluation. Another advantage to professional consultations is that you will learn more about this topic and process, which will help you with other clients. • What if the client does not want or need an autism diagnosis? Not all autistic individuals need a diagnosis of autism (e.g., if they have no functional impairment). However, it may still be helpful for the client to understand themselves through the nonjudgmental lens of autism. I know (and love) some excellent therapists who help their clients understand themselves as being neurodivergent or having an autistic nervous system without ever needing a formal diagnosis. Be careful, however, to make sure that you provide your client with documentation as needed. I have heard several stories from adult autistics whose therapists saw them as autistic but never provided documentation, and those adults then had to “prove” their autism to new providers or risk being misunderstood. • If I’m not sure, should I raise the possibility with my client (or their parents)? While this depends on your relationship with the client/​parents (i.e., how long you have known them, how much trust has been built, etc.), generally speaking, I do encourage you to be open if you think there is a possibility of autism. So often, these clients go from one provider to another throughout their lives without anyone raising the possibility. Even if they are not diagnosed at this point in their life, a clear discussion about the possibility of autism now may be helpful in the future.

Reference Duvall, S., Armstrong, K., Shahabuddin, A., Grantz, C., Fein, D., & Lord, C. (2021). A road map for identifying autism spectrum disorder: Recognizing and evaluating characteristics that should raise red or “pink” flags to guide accurate differential diagnosis. The Clinical Neuropsychologist, 36(5), 1–​36. https://​doi.org/​10.1080/​13854​046.2021.1921​276

Chapter 3

The parent interview

Author’s note: I always start an evaluation with an interview, but the order of interviews varies. Generally, when parents initiate the evaluation, I interview them first. When adult clients initiate the evaluation, I begin with the client interview, then request permission to speak with a parent, other relative, friend, or partner. Why is the parent interview so important? A thorough parent interview is a cornerstone of a child, adolescent, or young adult evaluation. This part of your assessment can provide an essential historical perspective. Remember, the DSM-​5-​TR states that all criteria can be met currently or by history, and many less obviously autistic individuals learn over time to camouflage their autistic traits, which makes the early history incredibly important. However, while the primary goal of the parent interview is to fully understand the client’s developmental history, an effective parent interview can accomplish so much more. A good parent interview: • • • • •

Gives you data about the client’s history. Helps you understand the parents’ concerns. Helps the parents gain insight. Helps you learn about the child’s strengths. Helps you assess the supports and challenges in the client’s environment. • Builds trust. • Helps you understand the parents as people.

DOI: 10.4324/9781003403838-4

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By taking your time and moving through the history slowly and in great detail, you will help the parents gain more insight into their child’s challenges and strengths. Often, the parents come in wanting to focus on their current perception of the issues, but they can gain more perspective, and you can gain a more nuanced understanding of their child, by navigating through an in-​depth discussion of their child’s history. When Dominique’s parents first referred their daughter, aged 16, for an evaluation, they reported that she had never had difficulty making or keeping friends. By going through her social history year by year, however, they realized that Dominique’s only friends were made during her preschool years. She had not made a single new friend throughout elementary, middle, or high school (though Dominique’s friends had all made other friends).

The above example may seem obvious, but I have seen countless examples of this kind of insight occurring when parents are encouraged to take their time and give examples while discussing the social history. An extended parent interview will also help you connect and build trust with the parents. There is no substitute for spending face-​to-​ face time genuinely listening to another person tell their story. Parents invariably find that it is therapeutic to move through this process with a supportive listener. By the end of the two hours (yes, two hours), they feel much more familiar and comfortable with you. They feel heard on a deep level. They can see how seriously you are taking their concerns and their input. All of this will be tremendously helpful later when you give your feedback, diagnoses, and recommendations. Finally, doing an extended parent interview will allow you to really get to know the parents and understand what they are bringing to the evaluation. All parents have their own genetics, histories, fears, strengths, and biases. Some of them are autistic themselves (usually undiagnosed), which can significantly affect the lens through which they view their child and her challenges. Understanding each parent’s personality, fears, biases, and preferences will help you design a feedback session that will be useful to them. For instance, some parents of autistic

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kids are highly data driven; when working with them it is important to focus heavily on your data when giving feedback. Some parents have very disparate views of their child, and it will be essential to ensure that each parent feels heard and to avoid making one parent feel like you are siding with the other (even if you are). If a particular parent is deeply worried about medication, you can lead with the fact that there is no pressure to medicate their child, regardless of diagnosis. Parents are as varied as the children we see, and getting to really know them is the only way to tailor your feedback session to make it as effective as possible.

General principles for the parent interview Find a balance between structure and flexibility. There are several well-​regarded semi-​structured interviews, most notably the ADI-​ R and the MIGDAS-​2. While there are certainly benefits of the semi-​ structured approach, particularly for clinicians who are still becoming familiar with autism, there are also benefits to taking a less structured approach to the parent interview. Instead of structuring the interview as a question-​and-​answer format, I find it much more effective (and easier) to coax the parents into storytelling mode. When an interviewer asks a list of questions and associated follow-​up questions, the parents may respond directly to these questions, without offering the more abundant and richer information that can be obtained if they are encouraged to relax into storytelling mode. For this reason, I find that parent (or any) interviews are most informative when they feel more like a compelling, deep conversation. I am not arguing that this approach is categorically superior to a semi-​structured interview. However, it is another option to consider, as it has worked well for me and for those I have trained. I feel strongly that, for diagnosing individuals who are less obviously autistic, simply asking rote questions such as, “Does he say the same thing over and over again?”, or “Did she engage in pretend play?” will not help you uncover less obvious autistic traits. I find it most effective to avoid yes/​no questions where possible, and to say as little as possible while approaching what the parents say with curiosity and a desire to understand, so they will say as much as possible. Strive for precision and detail in your understanding. What you will hear from clients and others is their narrative –​the story that

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they tell themselves and others, based on their experiences. The narrative does not always provide the data you need, though it can give you valuable clues to the data. It is essential for you to ask for specific behavioral examples and for explanations of how interviewees drew their conclusions. Also, be very specific about the meanings of words, as people use words in different ways. For example, if a parent characterizes their daughter as extremely extroverted and friendly, when you ask what that looks like, you may find that she talks to everyone indiscriminately and at great length, which has different implications regarding her social development. The parents of 13-​year-​old Chase reported that he had always been remarkably even-​keeled.When asked to explain this, they described many instances that usually induce a display of emotion, e.g., opening birthday presents or coping with huge disappointments, and on each occasion Chase’s parents recalled, “He stayed unbelievably calm and didn’t show any emotions at all!”They added that there was a running family joke that Chase would make a great card player because of his persistent “poker face.” This all indicated a limited range of facial expressions in different contexts.

Allow ample time. I consistently find that two hours is the right amount of time for these interviews. People who request an assessment tend to be complicated people with complicated histories. One hour is often not enough time to allow the story to unfold, and if you rush yourself and the parents, the interview can devolve into a superficial discussion or a question-​and-​answer format, which won’t be nearly as effective. Consider the source. When interviewing parents, the clinician must consider the limits of their ability to report accurately, even when the parents are being as open and honest as they can be. For instance, some parents are not aware of how much they accommodate or compensate for their child. You need to consider the effort the parents have put into helping their child engage in social interactions, such as signing them up for lots of structured activities, planning regular get-​togethers, or always being available during social time to help their child navigate interactions with other kids. The child’s age at which the parents do this is, of course, also relevant.

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Additionally, autism is highly heritable, so when interviewing parents and other family members, it is important to keep in mind that they themselves may have undiagnosed autism, which may affect their frame of reference for what is typical. That is, if one or both parents have social skills or other behaviors that are similar to their child’s, they are unlikely to consider those issues unusual or worthy of mentioning. Finally, consider family structure. For instance, if the child has no siblings, it will be much easier for the parents to accommodate, and the parents may thus be unaware of some of their child’s autistic traits. In a different scenario, if the child has an older sibling with significant challenges, such as more obvious autism, the parents will be less likely to notice or report less obvious autistic traits. Always be on the lookout for strengths. Parents can often name obvious strengths, such as reading, being a hard worker, or having a good sense of humor. As you move through the history, always listen for other strengths to highlight. For instance, if the parents mention that the child goes to sleepaway camp each summer and engages in new outdoor activities (hiking, canoeing, etc.), you learn that the child can be adventurous. If the parents describe their child constantly telling adults what they can/​can’t or will/​won’t do, you know that this child really self-​advocates. While they may need help being more effective in their self-​advocacy, the fact that they have the insight, communication skills, and motivation to speak up to adults about their needs is a huge strength! The parents may not have considered their child’s behavior from this perspective and may not have recognized this area of strength. By the end of the interview, when you explicitly ask them to describe their child’s strengths, you will already have a list of your own to offer. This will not only provide you with further insight about the child but will also go a long way toward building a relationship with the parents and developing a plan that will motivate the child because it builds on their individual strengths.

Connecting culture Some cultures and family systems may involve extended family in decision-​making as well as day-​to-​day functioning. Help the family consider who are the pertinent reporters of the individual’s history. For example, there may be a matriarch or patriarch

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in the extended family, and having that person’s input and buy-​in from the beginning could be crucial. In these cases, Jamell recommends inviting more family members to participate in the process, via interview and/​or participation in the feedback session. Clinicians need to do more than just be open to it; we need to proactively help the family think through who should be present. In the clinician–​client relationship, there is an implicit imbalance of power, and this can be exacerbated if the clinician is of the dominant culture and the client/​family is of a minority culture. In these cases, the family may feel vulnerable –​hesitating to share pertinent information, such as family history or marital disagreement about parenting approaches. For some cultural groups, this level of transparency with strangers is not an accepted practice. This recently happened to Dr. S., when a Black family gave her very little information about their child and their home life. Dr. S. remembered the parent candidly telling her, “I know you people at [Hospital location] are CPS central so I have to be careful what I say to you.” Dr. S. acknowledged that the mother probably had culturally understandable reasons for her concerns about sharing her discipline practices, even if they wouldn’t have fallen in the realm of abuse. Dr. S. was cognizant that “I may have been perceived as a ‘White Doctor’ where there has been hesitancy to share a lot of details and a concern for over pathologizing their kids.” Jamell recommends the following to incorporate an understanding of culture into parent/​family interviews, and to cultivate a trusting, collaborative relationship with your clients: • Consider what unspoken messages you send to your clients. For instance, what multicultural images do you have in your office and waiting room? What is the diversity of professionals and staff at your office? What is the diversity of the other clients there (e.g., will this family be the only people of color in the waiting room)? • Remember that we never actually achieve cultural competency; rather, we must always strive towards understanding our clients through their cultural lens. Proactively ask questions about relevant cultural issues and allow yourself to be curious about the role that culture plays in the

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experience of each client. Explore how race/​ ethnicity/​ cultural backgrounds impact each client’s presentation. Consider and ask about how race has influenced past healthcare experiences. • Recognize that opening up to a stranger might be very scary, and this may be particularly true if they are of a different cultural background. Look for signs that you may have offended the client or family member, such as sudden guardedness or vague responses. • As with all clients, validate the family’s perspective and knowledge about their child, themselves, and their lived experience. Be cautious about inadvertently leading the person to question their perception of their experience (i.e., gaslighting).

How I structure my parent interviews However you structure your interview, it is essential that you are familiar with the DSM-​5-​TR or ICD-​11 criteria for autism before beginning a parent interview. Please read Is This Autism? A Guide for Clinicians and Everyone Else by Donna Henderson and Sarah Wayland for a full discussion of the diagnostic criteria. The brief overview of the criteria earlier in this book is not a substitute for the detailed explanations covered in the prior book.

Part 1: Encourage the parents to tell their story. After greeting the parents and giving them the opportunity to speak about the concerns that led them to seek an evaluation, provide the following prompt to elicit storytelling mode: “Please start at the beginning and walk me through your child’s life. Take your time, tell me what was going on at each stage –​academically, but also socially, emotionally, and behaviorally. Tell me whatever stories pop into your head, any concerns you had at the time, and concerns other people mentioned, even if you didn’t agree with them. I will intervene with questions as we go along.” This structure feels comfortable for most parents –​think about it, wouldn’t you enjoy the chance to tell your child’s story in this way to an attentive listener?

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As the parents tell their story, interject to: • • • • •

Adjust their pace (faster or slower). Ask for specific examples to clarify facts (versus interpretations). Remind them to cover all domains. Name (first) names. Prompt them from the document review.

As the parents tell the story, interject to adjust the pace. Sometimes, parents get caught up in irrelevant details (how many ear infections she had, their detailed opinions about a certain teacher, etc.), and you will need to gently nudge them back on track by asking a general, open-​ended question (e.g., “So, during this time period, what were her interests?”). Other times, parents actually move too quickly through the early years. Often this occurs when there were few major challenges early on, leading the parents to jump ahead to the point when their concerns developed. For example, they may say, “Elementary school was fine –​the problems began when she started 6th grade…” It is very important not to let them skip over the early years! Remind the parents that you need the whole history to really understand what is happening right now, and lead them back to the early years by saying, for example, “Tell me what she was like during preschool”, or “What do you remember most about kindergarten?”, or “Who was her best friend in 1st grade?” Even though the parents may not have had significant concerns during those early years, you may hear relevant information that they would not otherwise think to bring up. The parents of 11-​year-​old Tristan stated that there was no significant history before the 4th grade. However, when we took our time and went through Tristan’s early years, they recalled that Tristan used to love repeatedly opening and closing doors; in fact, it was their favorite activity during the preschool years. This uncovered a history of repetitive behavior.

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It is important to ask for specific examples and clarification. For instance, if the parents say that their daughter is not good at reading social cues, ask for an example. Those examples will serve as data points to support your conclusions (if you diagnose or rule out autism), and using the parents’ own observations can be very powerful if they need convincing regarding diagnosis or recommendations. Gathering specific examples will also help you identify situations when parents misinterpret their child’s behavior. For example, if the parents report that their daughter is very good at reading social cues, ask them exactly what they mean (e.g., “Describe what that looks like.” “Can you give some examples?” “Are you comparing the child to a sibling or to someone else?”). If a parent’s example of their child’s strong ability to read social cues is that she gets extremely upset whenever someone is even slightly annoyed with her, then she may be over-​interpreting social cues and having strong emotional reactions to minor stimuli. Many autistic people are exquisitely sensitive to general emotional tone, but they cannot necessarily identify the accurate meaning of the tone (i.e., a negative tone could mean anger, annoyance, fatigue, jealousy, distraction, anxiety, sadness, etc.). The parents of Rachel, an effervescent 17-​year-​old, reported that she was particularly socially mature during elementary school. When asked to elaborate on this observation, they spoke at great length about the specialty camps that Rachel created each summer. These were designed for younger children and were based on themes, e.g., Harry Potter.With more questioning, it became clear that Rachel spent all summer, year after year, with much younger children (never with same-​aged peers), engaging in activities that she led and that centered on her current areas of interest. While her parents were correct that it took maturity to develop and run these camps, deeper digging brought to light her intense interests, need to be in charge of play interactions, and tendency to spend her time only with much younger children.

You will likely need to remind the parents to cover all domains of the child’s life as they tell their story. If they focus mostly on academic issues, you can interject with questions about behavior, friends, anxiety, etc. If they only focus on their child’s functioning at

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home, you can remind them to also tell you what was happening at school. These clarifying questions communicate to the parents that their kids are multidimensional and that no single area of their life is more important than others –​you’re interested in the whole child, not just their presenting concerns! Ask parents to name names (first names only, and do not include those names in the report). It will help you to truly understand the social landscape on a more personal level and to ask follow-​up questions. Proceed in detail year by year and ask questions such as, “Who was he friends with that year?”, “How old was this friend?”, “What did they enjoy doing together?” It helps to ask for (first) names in order to keep track of the friendships as you move through the child’s history. I call this “friend mapping.” This allows you to note whether or not the child’s friendships persist but also the nature of the relationships, e.g., were the friends always two years younger, were the friends always quirky, bossy, or meek? For example, if the parents talk about a best friend during 2nd grade, ask for the first name of the friend. Let’s say it’s Rudy. Then when they are talking about later grades, you can ask, “What happened to Rudy?” or “How did that friendship play out over time?” You can also ask, “What was Rudy like?” in addition to “How did they become friends?” and “What was their friendship like?” These questions are of the utmost importance as you try to assess the pattern and course of the client’s friendships. Some autistics will “latch onto” one friend and not let others into the friendship bubble. As you can imagine, these friends often shift away because they feel suffocated by this possessive behavior. Another pattern you may observe in autistic girls is to have one friend who is quite popular. Let’s say you are evaluating Eva, and Eva has one (and only one) friend named Maddie. If Maddie is Eva’s only friend, but Maddie herself has many friends and a very active social life outside of Eva, it paints a picture. Autistic clients also sometimes only have friends who are neurodivergent or quirky. There is absolutely nothing wrong with having quirky friends (many of mine are!), but it does tell you something about a child if all of their friends have been quirky or neurodivergent themselves. It will be easier to obtain all of this detail and to track friendships over time if you and the parents actually use real (first) names and map the course of those friendships.

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You will also want to prompt parents regarding information from the document review. For example, prior evaluation reports can provide a wealth of information, especially when you are evaluating an older client. Concerns that were prominent when the child was evaluated at the age of five may no longer seem pertinent to (or may, in fact, have been forgotten by) the parents of a 16-​year-​old, but these can provide valuable information about the child’s developmental course. This is a good moment to pause and talk about how to take notes during the interview. Of course, there is no right or wrong method of note-​taking, and everyone has their own preferences. However, the more organized your notes are, the more effective you will be at identifying relevant information during the interview, and the more efficient you will be when it is time to discuss and/​or write up your findings. I offer the following general template. SAMPLE TEMPLATE FOR INTERVIEW NOTES 

Medical and early developmental history: Educational history: Social development: Social reciprocity: Nonverbal communication: Relationships: Other relevant history: Repetitive behavior: Flexibility:

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Interests: Sensory differences: Emotional and behavioral functioning: Strengths:

As the parents move through the chronology, you will take the majority of your notes in the educational history section. This will provide you (and later your reader) with the chronological narrative of the child’s life. However, whenever the parent provides a detail that is relevant to the possibility of autism, you will make a note under the appropriate section. For example, if the parent is talking about the period between 3rd and 5th grade, and they mention that their daughter’s friends began to shift away, that tells you that she had difficulty maintaining friendships, which goes under the Relationships section. Don’t worry if this seems hard at first; actively categorizing information as you hear it will become automatic more quickly than you think! To follow up on the prior example, quickly scroll down to the Relationships section and note something brief, such as “3rd–​5th grade friends gravitated away.” Here are some more examples: • If the parents are talking about preschool and mention that eye contact was a problem, you would note that in the Nonverbal communication section as “preK poor eye contact.” • If the parents are discussing 4th grade and remember that “she was obsessed with Senator Collins” (this was a real example, from a girl who had never lived in or been to Maine, and it was long before Senator Collins was more widely known), you would note “4th grade obsessed with Senator Collins” in the Interests section, using the word “obsessed” if that is how the parents described it. • If the parents recall that she refused to ever color outside the lines during kindergarten, you would note that in the Inflexibility section as “refused to color out of lines in K.”

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• This applies to strengths as well as problems! For instance, if the parents are talking about 9th grade and mention that she consistently goes to her teachers for extra help or accommodations, then you would write “self-​advocates/​open to assistance” in the Strengths section. Even if you are not sure whether something properly belongs in a particular section, we suggest that you go ahead and note it, so that you can review it further. For instance, I was recently interviewing a couple, and they mentioned their child’s “possible poor vision.” Because I always ask for more specifics, I asked them what made them think he had poor vision. They reported that his vision exams are always within normal limits but that he holds his piano music very close to his face for long periods of time. This struck me as possible sensory craving, so I noted it in the Sensory section. If you follow this method, by the time the parents have finished moving through the chronology, you may already have notes related to each area of the DSM criteria for autism. These notes will quickly give you a sense of where you already have some evidence for autism and where you still need to query, which will help you move through the second part of the interview. Part 2: Filling in the blanks. After the parents finish the chronology, you will already have a sense of what could be going on and will be ready to fill in the blanks (specifically, for the criteria for autism). This part of the interview is a more structured, question-​and-​answer format during which I move through each of the DSM-​5-​TR criteria and ask relevant questions. Any notes that you already have in each section can be used as prompts when needed. This will also help you to determine where to spend interview time; for instance, if you already have a great deal written under the reciprocity section but nothing under the nonverbal communication section, then you will know that you need to spend more of the remaining time assessing whether there is evidence of difficulty with nonverbal communication. For this part of the interview, particularly for those of you who are less experienced with autism, it will help to have some questions ready for each section. Following are examples, which are designed to explore

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differences or challenges in each area that could represent the less obvious presentations of autism. These questions are not a script for a structured interview; rather they are provided as reminder prompts to help you think about each criterion as you move through the interview. You do not need to ask all of these questions, and you certainly do not need to ask them in this order. If you have already uncovered traits or behavior in a particular category, move on to the next area. Let these suggestions guide you through the interview, with your curiosity as your ultimate guide to the client’s inner experience. Just as every autistic person is one-​of-​a-​kind, each and every interview is also unique.

Examples of questions related to social reciprocity: • How are they at greeting others and responding to greetings? • What kind of social coaching or prompting have you had to provide, e.g., reminders to say hello? Is this different from what their siblings needed or from what you expected? • How are they with basic social niceties? (like saying “bless you” to a sneeze) • How do they initiate interactions? • How do they respond when peers or adults initiate interactions with them? • How do they do with the back-​and-​forth flow of conversation? • Do they sometimes talk at people or take over conversations? • Do they provide too much or too little background information when they tell you something? • Are they tangential (wandering or switching topics)? • Do they ask follow-​up questions about topics that are of interest to others?

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• Have you or others found them hard to connect with? • Do they make small talk just to connect, or is their communication mostly functional? • Will they chat with you about non-​preferred topics? • How much interest do they show in other people’s preferred topics? • Do they have curiosity about other people and their lives? • How do they respond to praise? • How do they do with perspective-​taking? Do they see and consider other people’s points of view (particularly when the client is directly involved)? • How often do they share personal information with parents or others? Do you have to draw personal information out of them, or do they share it spontaneously? • Do they engage in conversation about a variety of topics? • Have there been socially awkward moments? • Do they ever seem rude? • How do they interact with strangers? • How well do they understand others’ intentions? • How well do they comfort others, especially peers or siblings? • How are they with physical affection? Do they initiate or respond? (note that this may also be relevant to sensory issues) • How well do they express positive feelings toward family and friends (e.g., compliments, saying “I love you”)? • How often and how well do they lie? Will they tell a social lie to help others feel more comfortable, or do they just lie to avoid consequences? • Do they seem exhausted if they have to be in a social situation for too long? • Have you noticed differences in one-​ on-​ one versus group interactions?

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Examples of questions for nonverbal communication: • How was their eye contact when they were younger, and how is it now? • How often have you had to remind them to look at people when talking with them? • Do they understand why most people prefer eye contact when they are talking? • How loudly do they speak? Too loudly or too softly? How about when they were younger? • How is their general rate, rhythm, and intonation (melody) when they talk? Have you ever felt that there was anything unusual or unique about it (e.g., baby talk, falsetto, robotic, monotone, or overly dramatic)? • How would you rate their ability to “read” other people? For instance, do they know when other people are getting bored or annoyed with them? • Whether good or bad: Tell me why you think that. • Do they show a typical range of emotions? • Have there been times when they didn’t show an emotion you expected? • How much do they gesture when speaking? • Is it easy or hard for others to “read” how they are feeling by their body language? For instance, do they look sad or grumpy when they are in a neutral or happy mood? • Have there been times when their affect didn’t make sense given the situation? • How is their personal space? Was it ever too much or too little? • How do they do when walking together? Bump into you or walk separately, ahead of or behind you? (This can be due to lack of social awareness, but may also be due to poor muscle tone or difficulty with proprioception.)

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Examples of questions related to relationship management: • How are they at making new friends? Were there times when that was hard? • Do they keep friends over time? • Have friends shifted away from them at times? • Have they complained that they don’t have as many friends as they would like? • Tell me about their best friends. • What are their friends like? What do they have in common? What do they do together? • Have there been times when they describe someone as a friend, but you think of them more as an acquaintance or just a classmate? • Tell me about their ability to flexibly adjust their interaction style to suit different contexts, for instance, talking differently to adults, peers, and younger children. • Does their behavior vary depending on who they are with? • Are they appropriately respectful of adults in authority positions? • Tell me about how motivated they are to interact with others and have friends. • Tell me how they manage conflict with peers and with adults. • And if appropriate for age/​developmental level –​how much of an interest have they had in dating? Any experience? Describe. Examples of questions for repetitive or idiosyncratic behavior: Movement: • Have there ever been “tics”? (You are not necessarily looking for tics, but parents may think of them that way)

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• Unusual hand or arm movements or neck rolling? • Repetitive whole-​body movements, such as twirling, bouncing, or dancing? • Pacing? • Walking the perimeter of the backyard or playground? • Persistent skin-​picking? • Persistent hair-​pulling? • Toe-​walking past age three or so? Language: • Have they ever used language that was quirky or repetitive? • Said things in idiosyncratic ways? • Made up words or names for things or people? • Said the same things repeatedly in the same way? • Used unusually formal language (e.g., saying “mother” and “father” instead of “mom” and “dad,” when that is not typical for the family)? • Repeated words, phrases, dialogue, or lines from songs or movies? • Unintelligible speech after about age two? • Asked repeated questions? • Used language that seems scripted? • Reversed pronouns (e.g., used “I” for “you”)? • Made repetitive vocalizations, such as unusual noises or humming? Use of objects: • Have they ever used toys or objects in ways that surprised you? • Did or do they ever collect, line up, or organize objects?

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• Have they ever used toys or objects in the exact same way over and over again? • Did/​do they play with them in ways that were/​are repetitive? • Have they ever watched the same movie or show, read the same book, or listened to the same song over and over and over? • Did/​do they repeatedly open/​close doors or turn lights on/​off? Information: • Do they ever organize and reorganize information, for example, making lists or spreadsheets? (Note: Parents are often unaware of this, so remember to also ask the client this question directly.) Examples of questions for inflexibility: • How do they do with transitions? Has it always been like this? • How do they react to big or small changes? (Note: Look for resistance, defiance, avoidance, overreactions, or anxiety.) • Have they had routines that needed to be followed regardless of whether it made sense in the moment? • Do you have to prepare them for change or help them recover from it? • Even if they are generally flexible, are they inflexible in any specific way? Describe. • Are there things they have to do in a particular way or order? Has this ever been a problem? If yes, describe. • Have they ever been a black-​and-​white thinker? This can be about activities, topics, ideas or people. Describe. • Do they get stuck on their perceptions or ideas? Give examples. • Have they ever been a rigid rule-​follower? And/​or tattled on children who don’t follow the rules? • Do they ever push back against rules or expectations, or are they a “model child”?

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• Has there been perfectionism? • Would you say they have an unusually strong moral compass or an unusually strong sense of fairness? • Have they ever worn the same clothing over and over again (this could also be related to sensory over-​responsivity)? • Have they ever been concrete or literal in their interpretation of language? • Have they ever refused to part with things that most other people would consider trash? Examples of questions for intense/​a typical interests: As you move through the history, make sure to understand what they have been interested in at each age, and ask for more details. Intense interests: • Have they ever had any passionate interests? • Note the words used to describe the level of interest and ask about them. For instance, if the parents say they were “obsessed,” ask why they use that word. • Was this ever a problem (e.g., getting in trouble for reading in class every day (not just once in a while), or only wanting to write about WWII tanks for school essays)? • Have they collected many facts regarding their interest? • Do they spend an excessive amount of time reading about or researching certain topics? Atypical interests: • Have they ever had any interests that surprised you or that you thought were quirky or atypical for their age? • Any interests that are typical but have an unusual focus (such as memorizing sports statistics but not playing or watching that sport)?

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• Where did that interest come from? • Why did it surprise you? • Have they had a narrow range of interests, or a lack of deep, sustained interests? • Have they ever been particularly attached to a specific object (excluding typical ones, such as a blanket or a stuffed animal, though consider the child’s age)? • Have they displayed interest in parts of objects? Examples of questions for sensory issues: Over-​r esponsivity (especially when younger): • Auditory stimuli: Noise in general (e.g., puts hands over ears, has to avoid noisy environments); specific sounds (e.g., toilets flushing, people chewing, electricity, whine of electronics, humming sounds other people don’t hear); overwhelmed by noise (e.g., can’t watch a movie in a theater)? • Tactile stimuli: Aspects of clothing (e.g., tags, seams, or specific fabrics); texture of food (e.g., crunchy, rubbery, or thick); human touch (tactile defensiveness); dislike of touching things (e.g., hating art projects that involve putting things on their hands)? • Visual stimuli: Aversions to things like bright light, sunlight, certain colors, or things that move in the periphery? • Tastes: Strong aversion to flavors in food? • Smells: Strong aversion to particular scents (e.g., perfume, scented candles)? • Vestibular stimulation: Motion sickness, avoidance of spinning, fear of heights, refusal to walk on things that require them to balance (like the curb or a log across a stream)? • Body positioning (proprioception): Really good at gross motor (e.g., sports) or fine motor (e.g., crafts).

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• Internal sensations (interoception): Strong response to pain (low pain threshold)? • Noticing details that others don’t (in any of the senses)? Under-​r esponsivity: • Auditory stimuli: Do they fail to notice when the doorbell rings? Or when a timer goes off? • Tactile stimuli: Doesn’t notice when clothing is bunched up or fits poorly; eats anything; doesn’t notice food on face; doesn’t notice when someone touches them; doesn’t mind sports with lots of crashing, etc. • Visual stimuli: Doesn’t notice or isn’t bothered by bright lights, clutter, chaotic motion, etc. • Tastes: Do they fail to notice when a food is strongly flavored (e.g., spicy, too salty, too sweet)? • Smells: Do they notice when food is spoiled? Or when there is a noxious odor (like gasoline)? • Vestibular stimulation: Do they have a poor sense of balance? Can they spin on things and never get sick? Do they not feel sick when others are nauseated by motion (e.g., when an airplane suddenly drops)? • Body positioning (proprioception): Are they clumsy, unaware of personal body space, banging into things and people, poor handwriting, etc.? • Internal sensations (interoception): Do they fail to notice when they are injured or ill (high pain threshold)? Or when they are hungry, thirsty, or tired? Are they unaware of their own emotional responses (e.g., anxious, angry)? Was toilet training particularly difficult? Do they know when they need to go to the bathroom? Or do they require reminders long after the age when other kids are able to do this on their own? Did they have toileting accidents (past the typical age for this)?

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Craving: • Auditory stimulation: Do they seek out certain noises (e.g., the sound of a train stopping on the tracks)? • Tactile experiences: Do they love touching things (e.g., soft blankets, running their hands across smooth cold surfaces, sticking their hands under running water)? • Visual stimulation: Do they seek out certain types of visual stimuli (e.g., blinking lights, being outside in the bright sun, water in the sunlight)? • Taste experiences: Do they crave certain flavors, (e.g., spicy, salty, sweet)? Do they lick people when they meet them? Do they lick objects? • Smells: Do they sniff people or things when they first encounter them (new people, places, objects)? • Vestibular stimulation: Do they spend a lot of time spinning, swinging, jumping? • Signals from muscles and joints (proprioception): Do they crave crunchy foods? If they are younger, do they persistently chew their shirt, pencils, or other objects? Do they enjoy jumping, pushing, pulling, or crashing into things? If they are older, do they crave movement of the sort involved in sports like running, wrestling, kickboxing, or karate? • Internal bodily sensations (interoception): Do they crave certain experiences because of the way it makes them feel (e.g., loves roller coasters because of the feeling they get at the top of a drop, loves extreme sports, likes the feeling they get from cutting)? There are other questions that also explore complicated sensory experiences: • Have there been issues with hygiene? (Follow up on these to see if there is a sensory component, e.g., they won’t shower because he hates getting wet or hates the smell or feel of soap.)

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• Have there been phobias or unusual fears that might be sensory-​based? • Do they say unusual things like, “I can feel colors,” or “I can taste shapes?” By this time, your interview is almost over, and that’s OK because you have a clear sense of this child’s developmental history and a sense of whether or not they may meet criteria for autism (and you haven’t even met the child or talked to teachers yet). It’s time to finish up the interview… Part 3: Loose ends. I informally think of this part of the interview as loose ends. These last few questions are essential for understanding the client. The last part of the interview includes: • • • • •

Follow-​up questions about emotional history/​functioning Family history Strengths Parents’ goals for therapy or the evaluation A last chance to ask if there is anything else

In the emotional section, you will already have noted any reported anxiety, phobias, depression, intense emotions, or relevant therapy or medication. You will now need to ask follow-​up questions to make sure that you understand the child’s emotional world. For example, what is their baseline mood? That is, what are they like when no demands are being placed on them and they are in a familiar environment? This is important because, for example, some of these kids get (mis)diagnosed with disruptive mood dysregulation disorder (DMDD) because of their frequent meltdowns/​tantrums. However, DMDD requires an irritable baseline mood. If they are not irritable unless they are in sensory overload or when unmanageable demands are being placed on them, a DMDD diagnosis would not be appropriate.

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Of course, it will also be important to gain clarity as to what triggers their anxiety, anger, etc. Ask the parents how meltdowns/​tantrums usually play out at home, because this will tell you how much and what type of parenting guidance they will need. If the parents are trying to reason, negotiate, or threaten consequences during meltdowns, for instance, you will know that they need to learn that these approaches are counterproductive when the child is that upset. Also ask about headaches, stomachaches, and other gastrointestinal (GI) issues (e.g., constipation) as you discuss emotional issues. Many autistic children and teens have sensitive GI systems and can have GI or other physical symptoms (such as headaches or chronic fatigue). If GI or other physical symptoms are present, be sure to ask if they have had a medical workup for these symptoms. Whether or not the medical workup identified a specific etiology, the physical symptoms may also be affected by stress and anxiety. Autistic people often report being sensitive to health conditions that might have less of an impact on someone who is not autistic, e.g., gluten sensitivity or seemingly mild food allergies. Finally, there may be some as yet undiagnosed medical issues such as postural orthostatic tachycardia syndrome (POTS) or Ehlers-​Danlos Syndrome (EDS). My other book (with Sarah Wayland), Is This Autism? A Guide for Clinicians and Everyone Else, includes a chapter on co-​occurring conditions. Familiarizing yourself with the conditions described in that chapter will help you with this part of the interview. For family history, ask each parent about themselves, and also about their family (parents, siblings, grandparents, aunts, uncles, nieces, nephews). Ask about anyone who has had any academic, social, behavioral, or emotional difficulty, whether or not they were diagnosed or treated. Many adults have difficulties or quirks that were never clarified or addressed in any way. Ask about individuals whose adaptive functioning was unexpectedly low; for instance, adults who were strong students but never moved out their parents’ home. If you simply ask for family history it will often be limited to a few basics (e.g., my mother was anxious, my nephew has ADHD), but if you ask for more detail you will frequently find informative stories, such as the mother offering, “My sister is brilliant and got a perfect score on her SAT. She is a college professor, but doesn’t really socialize or date. She is very anxious and very particular. She doesn’t really connect with anyone and seems sort

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of isolated.” Or you might hear from a father, “My dad was really rigid, everything had to be done his way. He had friends, but only other men who liked Civil War reenactments. That was his one main interest his whole life. It was hard to talk with him about other things.” Of course, you would never diagnose someone with autism in the absence of an evaluation, but hearing these stories will help you get a sense of the possible family history. At this point, it is not uncommon for one of the parents to talk about their own struggles, as they relate to their child’s. Seeing your child struggle with the same issues you had (or still have) can be incredibly painful and anxiety-​provoking. Handling this situation with care makes all the difference between ending up with a parent who is in denial and refuses your conclusions, and parents who not only understand their children better but also have had important insights about themselves. You are nearing the end of the interview. As it unfolded, you undoubtedly heard about the child’s strengths; now is the time to explicitly ask for more. These can be academic (reading, math, written expression, or topic areas such as history) or cognitive (intellectual curiosity, visual spatial skills, oral expression, memory, etc.). Strengths can be social (high social motivation, great sense of humor, etc.) or intrapersonal (she really knows herself well and can take in feedback non-​defensively). As described in the chapter on autistic strengths in the companion volume, Is This Autism? A Guide for Clinicians and Everyone Else, strengths can sometimes be remarkable for this population: for instance, having an uncanny memory for autobiographical or other information, having perfect pitch, or noticing details that everyone else misses (think of Sherlock Holmes or Mr. Monk). Explicitly discussing strengths at the end of the interview allows you to finish on a positive note. Last but not least, ask the parents to circle back to their goals for the evaluation or therapy; what prompted them to make an appointment and what are they looking for? Sometimes you will ask what their theory is (if you can’t tell whether or not they have already wondered about ADHD or autism or another particular diagnosis). Knowing what the parents are thinking, hoping for, or fearing will help you plan a feedback session that will work well for them. End the interview by asking, “Is there anything at all that we haven’t discussed that you want to bring up?” This gives the parents one last

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chance to mention any concerns, strengths, or questions that haven’t yet arisen. You might also encourage the parents to email you if they think of other anecdotes or information that may be relevant, as some parents have more valuable material to offer after they have had an opportunity to let their thoughts and memories percolate.

Frequently asked questions • What if a parent interview is not an option? There are occasions when it is not possible to interview a parent, e.g., when you are seeing a client 18 years or older who declines to give consent for you to speak with their parents, when the parents are deceased, or when the parents are unable to participate for other reasons. In these cases, explain the importance of obtaining a broader understanding of the client’s history and current situation from other perspectives, and ask if there are other individuals whom you may contact (e.g., a spouse, sibling, grandparent, aunt/​uncle, teacher, coach, friend, significant other). Importantly, the DSM states that “the absence of developmental information” regarding early history is not a reason to categorically rule out a diagnosis of autism. • What if a parent’s perspective is different from a teacher’s? It is not at all uncommon for parents and teachers to have very different views of the same child. This may be particularly true for children who struggle with emotional regulation, which is common in autism. A child may be “an angel” and “a model student” at school, while at home she is easily distressed and prone toward outbursts, resulting in the need for the whole family to “walk on eggshells” around her. Some teachers or clinicians will overtly or implicitly suggest that this is a parenting problem; I caution you against jumping to this conclusion. Alternatively, there are times when teachers have significant concerns that are not shared by the parents. This may be because the sensory, social, academic, or other demands of the classroom (not to mention the bus, hallways, etc.) are overwhelming for the child. These discrepancies can be very confusing and distressing for parents, and you can speak with them about how to reconcile these differences and implement strategies to support the child as needed in each environment.

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• What if the parents do not agree with each other? There are occasions when parents have very different views of their own children, based on their individual experiences with their children and their own individual perceptions and perspectives. This can be confusing for the clinician, especially when the parents’ views are in direct opposition to one another (e.g., one parent feels strongly that the child has social vulnerabilities, while the other feels strongly that the child is quite socially savvy). When this occurs, it is all the more important to encourage each parent to explain how they came to draw these conclusions about their child’s strengths/​vulnerabilities via specific examples, and to assure the parents that these differences of opinion are not uncommon. • What if the parents didn’t raise concern about autism and realize that I’m asking questions related to it? While many clients come in with questions about possible autism, many others have not considered this possibility. Even when autism is not a specific referral question, it is essential to ask questions about social skills development and interpersonal functioning during the clinical interview. You can then pursue a more in-​depth exploration of the possibility of autism if the parents’ responses lead you in this direction. Sometimes parents will realize what you are doing; for example, they may ask, “Why are you asking about this? Do you think my son is autistic?” At such times, you can explain that, in an effort to be thorough and to fully understand their child, you ask a wide variety of questions during the interview, to learn about their child’s history and functioning across domains, so you can understand their child as a whole person.

References and related reading American Psychiatric Association. (2022). Diagnostic and Statistical Manual of Mental Disorders (5th ed., text rev.). https://​doi.org/​10.1176/​appi. books.978089​0425​787 Bourgeron, T. (2016). Current knowledge on the genetics of autism and propositions for future research. Comptes Rendus Biologies, 339(7–​8), 300–​307. https://​doi.org/​10.1016/​j.crvi.2016.05.004 Duvall, S., Armstrong, K., Shahabuddin, A., Grantz, C., Fein, D., & Lord, C. (2021). A road map for identifying autism spectrum disorder: Recognizing

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and evaluating characteristics that should raise red or “pink” flags to guide accurate differential diagnosis. The Clinical Neuropsychologist, 36(5), 1–​36. https://​doi.org/​10.1080/​13854​046.2021.1921​276 Henderson, D., Wayland, S. C., & White, J. (2023). Is This Autism? A Guide for Clinicians and Everyone Else. Routledge. Matson, J.L., Matheis, M., Burns, C.O., Esposito, G., Venuti, P., Pisula, E., Misiak, A., Kalyva, E., Tsakiris, V., Kamio, Y., Ishitobi, M., & Goldin, R.L. (2017). Examining cross-​cultural differences in autism spectrum disorder: A multinational comparison from Greece, Italy, Japan, Poland, and the United States. European Psychiatry, 42, 70–​76. https://​doi.org/​10.1016/​ j.eur​psy.2016.10.007 (MIGDAS-​2) Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition. (n.d.). www.wps​publ​ish.com/​mig​das-​2-​monte​iro-​interv​iew-​gui​deli​ nes-​for-​dia​gnos​ing-​the-​aut​ism-​spect​rum-​sec​ond-​edit​ion Rutter, M., Le Couteur, A., & Lord, C. (2013). ADI-​R: Autism Diagnostic Interview Revised: Manual. Western Psychological Services. Steffenburg, S., Gillberg, C., Hellgren, L., Andersson, L., Gillberg, I.C., Jakobsson, G., & Bohman, M. (1989). A twin study of autism in Denmark, Finland, Iceland, Norway and Sweden. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 30(3), 405–​416. https://​doi.org/​10.1111/​ j.1469-​7610.1989.tb00​254.x Wendt, J., & Lincoln, A. (2011, May 12). Autism in an American Indian and Alaska native sample: The contribution of demographic characteristics, levels of acculturation, and cultural values and beliefs on service utilization [Conference paper]. International Meeting for Autism Research 2011. Wiśniowiecka-​Kowalnik, B., & Nowakowska, B.A. (2019). Genetics and epigenetics of autism spectrum disorder —​current evidence in the field. Journal of Applied Genetics, 60(1), 37–​47. https://​doi.org/​10.1007/​s13​353-​018-​00480-​w Young, S., Hollingdale, J., Absoud, M., Bolton, P., Branney, P., Colley, W., Craze, E., Dave, M., Deeley, Q., Farrag, E., Gudjonsson, G., Hill, P., Liang, H.L., Murphy, C., Mackintosh, P., Murin, M., O’Regan, F., Ougrin, D., Rios, P., Stover, N., Tayler, E., & Woodhouse, E. (2020). Guidance for identification and treatment of individuals with attention deficit/​hyperactivity disorder and autism spectrum disorder based upon expert consensus. BMC Medicine, 18(1), 146. https://​doi.org/​10.1186/​s12​916-​020-​01585-​y

Chapter 4

The client interview

“…right from the start, from the time someone came up with the word ‘autism,’ the condition has been judged from the outside, by its appearances, and not from the inside according to how it is experienced.”

–​Donna Williams (1996) in her book Autism: An Inside-​Out Approach Why is the client interview important? The time has come –​ actually, it is well past time –​for a paradigm shift when it comes to diagnosing autism. In the absence of a lab test or scan that could provide definitive data, the diagnosis has historically been driven by observable behavior. While this remains an important part of the equation, particularly for children, it has resulted in an unfortunate reliance on the subjective opinions of other people. Parents, teachers, spouses, and other informants each have their own biases and preconceived notions, and we should not prioritize their perceptions over the individual’s subjective experience. For instance, over the past few decades, there have been countless attempts to create autism interviews for parents and other informants, such as The Diagnostic Interview for Social and Communication Disorders (DISCO), The Developmental, Dimensional, and Diagnostic Interview (3di), The Asperger Syndrome (and High Functioning Autism) Diagnostic Interview (ASDI), and the Autism Diagnostic Interview-​ Revised (ADI-​R), to name just a few. However, to my knowledge there are only two instruments that include interview questions for the clients themselves (the ADOS-​2 and the MIGDAS-​2, which I discuss in the chapter on testing because they are multidimensional measures).

DOI: 10.4324/9781003403838-5

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It is problematic to rely solely on observable behavior to uncover autism for a number of reasons. First, autism is not behavior; it is a way of experiencing and responding to the world. We now understand that many autistic individuals learn to camouflage at a young age, and many do so convincingly and pervasively, to the point that autism is not even readily observable to their family members or mental health professionals. In these cases, their behavior is not an accurate reflection of their experience, and it is only through learning about their experience that we can uncover and understand their autistic traits.

From the experts: Reflections on experience vs. behavior

“I can pass for normal on a temporary basis, but inevitably some level of shutdown will follow. That was not asked [during the evaluation] –​I was usually only asked if I could do whatever it was, not what it cost me.” –​Cath H.



“I was successful in school, but school was hell for me; I wouldn’t send my worst enemy to school. I had friends in college, but they were constantly and explicitly perplexed by my differences. So a checklist of whether I got by in school, had friends, etc. would miss a lot!” –​Diane H.

Second, behavior is not stable; it changes from situation to situation, and it can change dramatically over time. Reports gathered from different sources across different environments may vary a great deal. For example, if the client is a child, they may present very differently at home, during recess, during math class, at soccer practice, and at Scout meetings. Similarly, adult clients may present differently at work, at home with their families, when out with friends, and when they are entirely alone. This may make it difficult for the clinician to form a cohesive understanding of their behavior. Moreover, when considering the possibility of autism in adults, there may be few clear memories of autistic traits in childhood (before they learned to camouflage), unless there is a parent, sibling, or other relative who has unusually clear memories. This is particularly true for older adults, who are placed at an enormous disadvantage by the current paradigm and its emphasis on behavioral data.

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Next, some clinicians have the mistaken belief that they themselves need to observe autistic behaviors in their office in order to diagnose. These clinicians may not realize that many bright autistic individuals can mask their autistic traits, and present with typical eye contact, voice intonation, etc., for short periods of time in a one-​on-​one setting with a supportive conversation partner, i.e., a therapist or testing psychologist. Indeed, some autistics are unable to drop the mask even if they want to, because they have been wearing it with strangers for so long that they no longer know how to “take it off.” Finally, it is quite simply dismissive and disrespectful for mental health professionals to assume that we can understand an individual best by observing their outward behavior. It is essential to understand each individual’s inner experience in conjunction with their behavior. We must respect our clients’ perspectives and let our curiosity about their inner world guide our work with them. During a parent interview, Ahmed’s parents reported, “He is so incredibly empathic. If one of us is sick, he is so attentive and takes such good care of us.” During the client interview, Ahmed was asked about his caretaking behavior when his parents are sick. Ahmed reported, “You get used to the pattern of how they act. If they get sick, the pattern changes.” As such, Ahmed’s perspective on his behavior was quite different from his parents’.

For all of these reasons, engaging the client in an effective interview is of the utmost importance. In addition to understanding the client’s inner experience, an effective client interview can achieve so much. Like a good parent interview, a good client interview: • Gives you information about the client’s inner experience. • Gives you information about the client’s insight into themselves. • Helps you understand the client’s concerns. • Helps you understand how their inner experience shapes their behavior.

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• Helps you learn about the client’s strengths. • Helps the client gain insight. • Builds trust. General principles for the client interview There doesn’t need to be a particular structure. My client interviews tend to be somewhat unstructured. Their length and breadth, as well as the areas that are emphasized, vary for each client depending on their age, developmental level, cognitive functioning, language skills, socioemotional maturity, and insight. Interview questions will also vary depending on whether the client is self-​referred (e.g., adults who believe they may be autistic) or not (e.g., we may see the need to assess for autism even when the client and other key people in their life have never considered the possibility). In addition, you will need to spend more time on different areas for different clients. For example, for some clients the sensory experience is primary, while for others the experience of camouflaging is paramount, and this will affect the course of the interview. For these reasons, I will not be presenting a suggested structure for your interview, as you will need to meet each client where they are. The kind of conversations that you can expect to have with a five-​year-​old and a 55-​year-​old are quite different! I have found, as with the parent interview, that I am best able to connect with my clients and elicit their experiences by being flexible and asking a wide variety of questions. I prefer to have questions related to each diagnostic criterion ready to use as needed; examples are provided at the end of the chapter. Give a sense of what to expect at the beginning. This is helpful for most individuals but particularly for autistics, who often have difficulty coping with novelty or ambiguity. For instance, provide clarity about the types of activities that will occur (e.g., an interview and a number of tasks that take five to ten minutes each, etc.). Offer guidelines about drinking, eating, and taking breaks –​generally, letting the client know that they are free to drink during testing and can ask for a snack, bathroom, or stretch break at any time. Finally, tell them when the session will end. Ask about preferences for communication. Be clear about what the client should call you (e.g., first name or Dr. _​_​_​_​_​), and, of

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course, ask how they would like you to refer to them, including their pronouns. With adolescents and adults, particularly those who initiated the assessment (or therapy) themselves, ask them if they prefer to guide the process of providing information or if they prefer that you guide them by asking specific questions. Be explicit about other communication preferences as they come up. For instance, I recently worked with a 62-​ year-​old lawyer who felt she was autistic. During the interview, the client frequently trailed off and paused for lengthy periods before responding. After this happened several times, I explicitly asked her, “When you seem to lose your train of thought, would you like me to prompt you, or would you prefer that I wait quietly while you get there yourself ?” Offer options for the testing sessions. To the extent possible, offer a sense of control over the order of events and timing of breaks. For instance, for clients who struggle with ambiguity or the unknown, you might write up a schedule of the session. Some teens may choose not to take the breaks. You can also offer clients the opportunity to choose whether they would like to do some testing first or start with the interview. The more control that you can reasonably offer to the client, the better. Along the same lines, some of your clients (particularly those who might be autistic) will be vulnerable to sensory distractions in your office. It can make them more comfortable –​and build trust –​to ask if they are bothered by any aspect of the environment, such as lighting, temperature, noise level, odors, etc. If they are, problem-​solve together to make them more comfortable. For example, I stopped wearing perfume years ago. I also remove a ticking clock from the office upon request. (I considered permanently removing the clock, but it’s been helpful and interesting to see whether it bothers my clients, how much it bothers them, and how they handle it.) When asking about specific behaviors, traits, or experiences, include both the past and the present. You will likely need to keep reminding the client to consider their prior functioning and experiences, as well as their present circumstances. Remind them that you are interested in understanding their experiences in both the past and the present. Choose your wording carefully. While open-​ended questions work well for most non-​autistic individuals, many autistics may become overwhelmed by the ambiguity of these sorts of questions. The use of

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implicit or figurative language can also be problematic. Many autistics are likely to do better with more specific, direct queries. Some real-​life examples of what can happen when questions are too vague or open-​ended or require inferencing: • Clinician: “What brought you here today?” Client: “My father drove me.” A better question might have been, “Why are you having this evaluation?” • Clinician: “Why did you start seeing Dr. Pepper?” [the client’s psychiatrist] Client: “I don’t know why we chose her.” Instead, the clinician could have asked, “Why did you start taking medication?” • Clinician: “Do you have a sweet tooth?” Client: “I don’t taste my teeth.” It would have been better to ask, “Do you crave sweet foods?”

Keep it positive whenever possible. Use positive or at least neutral wording whenever possible. In addition to helping you create a safe and supportive environment for the client, there is some recent research that suggests that asking questions in a positive manner will yield more information; for instance, asking if a repetitive behavior creates “benefits” rather than “problems” is more likely to yield endorsements from some clients. For example, instead of asking “Do you engage in any odd or repetitive movements?”, say, “A lot of my clients tell me that they have certain movements or other things they do when they feel stressed or excited. These can be really enjoyable or helpful. Does that sound like anything you do?” Slow down. Many autistics are bottom-​up processors and consider many details and options as they reflect on their answers. For this reason, you may need to proceed more slowly through your interview than you usually do. Allow more than the usual amount of time for questions to land and for the client to formulate their response. If they feel rushed, their responses will not be as rich or as genuine.

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Paraphrase to clarify. Statistically speaking, most clinicians are not autistic, so the client interview often involves people with two different communication styles trying to connect. This raises the risk of misunderstandings. Frequently paraphrase your understanding of the client’s communication in an effort to clarify whether you’ve got it right. Dig deeper when the client reports a conclusion or offers a glimpse into their inner experience. The client’s narrative is the story they tell themselves, and it gives you clues to the data. When you hear the narrative, keep asking for examples. Ask clarifying questions, such as, “How do you know that?”, “How did you draw that conclusion?”, and “Have others told you that?” By considering these follow-​up questions, either the client will give you rich data to support their conclusion, or they will give you data that leads you in a different direction. During an interview, Hailey stated, “I’m weird.” When asked how she drew that conclusion, Hailey replied, “Other people have told me.” When asked if other people have told her why they find her “weird,” Hailey said, “One person said I wouldn’t stop talking about trees when we first met. That made me seem a little weird, I guess.” This opened up a conversation about the intensity of Hailey’s interests, as well as her interaction style.

Keep the diagnostic criteria in mind, and use them to organize your notes. As you conduct the client interview, consider taking notes within the structure of the diagnostic criteria. This will guide you to know where you still need to understand the client’s experience and which topics you can wrap up. Differentiate the client’s goals from other people’s goals. This is particularly important and challenging when the evaluation (or therapy) was initiated by the parents or spouses/​partners, rather than by the client themselves. Suspend your beliefs and judgment about what social interactions and relationships should look like. It is essential for non-​autistic clinicians to be aware that their notions about how healthy social interactions look may not apply to all of our clients, particularly

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our neurodivergent clients. We must pay close attention to our wording and our nonverbal communication in order to approach our clients with nonjudgmental curiosity about their experience, what works for them, and what they need to feel safe and successful (in whatever way they define success).

“My experience has been that healthcare professionals are very, very ­pro-​relationship and, whether they mean to or not, their discussion of relationships assumes that a person is ‘less than’ if they aren’t in a relationship or aren’t actively dating and seeking someone to be with for the long haul. When family members say, ‘Why aren’t you married’ or ‘Why don’t you have kids’ I ask them, ‘Why are YOU married’ or ‘Could you tell me why YOU had kids?’ And 9/​10 times they couldn’t understand why I would even ask that question because ‘it’s just something you’re supposed to do.’ I would really like healthcare practitioners to be mindful of their implicit relationship bias as much as they need to be aware of other implicit biases.” –​Carol B.

Strive to understand their inner experience. Ask explicit questions about the individual’s experience, e.g., how eye contact feels, how it feels to talk with friends, what it feels like after socializing, etc.

“I really wasn’t asked about my experiences at all. I was asked how many friends I have and how often I see them, and what it means to be a friend, but I wasn’t asked at all about my experiences in those relationships.” –​Riley A.

Ask questions about positive experiences. As with the parent interview, you are not just looking for autistic traits or problems. You are trying to help the client identify their strengths, circumstances in which they feel safe, times when they can drop their mask, activities that make them happy, and so on. These may not come up unless you explicitly ask about them. Ask, “Is there anything we haven’t talked about that you would like to bring up?” This is your client’s opportunity to raise any question, concern, or experience that you haven’t yet asked about. Sometimes, this question can result in a fruitful discussion. At other

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times, the client may be confused by this open-​ended and vague question, and they may respond with an unusual answer (which is, in and of itself, data). At the end of a long and highly detailed interview, 15-​year-​old Moe was asked if there was anything else we should know about them. They responded, “There’s a lot more.” I invited them to talk about these points, and to bring up whatever it was, to which they responded, “I don’t know.” I again offered, “Is there anything that we haven’t yet talked about that you’d like us to know?” Moe stated, “I remember very weird details from very weird stuff. Like the collar of my sister’s friend’s shirt the day I met her four years ago.”

End with this wonderful question from the MIGDAS-​2: “I’ve asked you a lot of questions about yourself. Now I’d like to invite you to ask something about me.” I find that my non-​autistic clients often enjoy this opportunity and ask questions such as, “Why did you become a psychologist?” or “What’s the funniest answer you ever got?” Some of my non-​ autistic clients are not really interested in asking me a personal question, but they may do so in order to meet the implicit social expectation, e.g., “Do you like your job?” My autistic clients, on the other hand, are often flummoxed by, or uncomfortable with, this off-​script question, and they tend to be unsure of how to handle it. This is one of the many gems I like from the MIGDAS-​2, which I will discuss more in the chapter on testing. Leave the channels of communication open. Adults, particularly those who are hoping for an autism diagnosis, often are anxious to fully present their case, and they may have anxiety about forgetting to include some details. Additionally, many autistics are more comfortable and much better able to fully respond to interview questions in writing, rather than entirely in an oral interview format. I always assure my testing clients that they can email me with any details that they remember after the session, and I invite them to communicate with me as much as they need to throughout the evaluation process. While emailing in between sessions feels comfortable for me as a testing psychologist, therapists may find this to be a violation of the boundaries of the therapeutic relationship. Instead, therapists might remind their clients that they can always provide more details in future sessions.

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From the experts: Reflections on written vs. oral expression

“It’s so much easier to not have the pressure of someone staring at you while you’re trying to think, wondering how they’re reacting to what you’re saying while you’re still trying to figure out how to say it. And it helps to read what I’ve written and make sure that I got it right.” –​Charlotte R.



“…many autistics are better at expressing themselves through written language. If a provider only bases their information on what is said, they can miss a lot…. I give my clients logs to fill out and questions to answer in between sessions. Looking at whether there are significant discrepancies between verbal and written language can also be telling. I’ve found this to be one of the most effective ways to initially assess autism traits.” –​Kim Clairy, autistic OTR/​L

Be aware of your countertransference In the past few years, there has been an explosion of information in the public domain about autism, and there are now an increasing number of adults (and some teens) who self-​refer because they suspect or firmly believe they are autistic. Many of these individuals have done a tremendous amount of research about autism; indeed, for some, autism itself has become an intense interest (around 20%, according to the survey described in the chapter on interests in Is This Autism? A Guide for Clinicians and Everyone Else). I believe that self-​knowledge is always good, and that people who take the initiative to research and try to understand themselves are resourceful, motivated, and often quite on point. In fact, a study by Francesca Happe and her colleagues suggests that over two-​thirds (about 68%) of adults who were assessed for autism warranted the diagnosis! Hilde Geurts and Marcel Jansen found an even higher rate in their sample–​about 84% of adults seeking the diagnosis received it! So it’s surprising (and, frankly, dismaying) to hear mental health professionals dismissing the possibility of autism, not to mention

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dismissing the individuals themselves, simply because these clients report that autism resonates with them. Strive to be aware of your reactions to clients, particularly those who bring up autism as a possibility. In my experience, autistics who have done their research sometimes have a deeper understanding of autism than the clinicians to whom they turn for validation. My experience also suggests that people who feel strongly that they are autistic often are, and their understanding of themselves should be taken very seriously. Remember, a client is not less likely to be autistic simply because they believe they are autistic –​in fact, it may be more likely!

Examples of questions to ask For the portion of your client interview that pertains to autism, it will help you to have some questions ready, particularly if you are less experienced with autism. The following examples are offered, designed to elicit the experiences of a person who might have a less obvious presentation of autism. I have created this list of questions based on the experience of doing countless interviews, asking adult autistics what questions they wish they had been asked, and of living with autistic family members. Some of these questions happen to overlap with those found in various structured or semi-​structured interviews. Other questions have been suggested by clinicians I respect (such as Theresa Regan or Kelly Mahler). Some of my favorites have been suggested by autistic adults. The questions are loosely organized in order to avoid presenting a single, overwhelming list of questions, but of course it is not possible to truly categorize such multi-​dimensional experiences. Furthermore, these are only examples of questions to help uncover the possibility of autism; a thorough clinical interview will also include questions about emotional experience, adaptive functioning, academics, etc. These questions are not a script for a structured interview; rather they are provided as reminder prompts to help you think about each criterion as you move through the interview. You do not need

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to ask all of these questions, and you certainly do not need to ask them in this order. If you have already uncovered symptoms in a particular category, move on to the next area. Let these suggestions guide you through the interview, with your curiosity as your ultimate guide to the client’s inner experience. Just as every person, autistic or not, is one-​of-​a-​kind, each and every interview is also unique. It will be important to use your knowledge regarding your client’s age, intellectual functioning, language skills, social-​ emotional maturity, and self-​awareness to select and tailor your questions. For example, in regard to insight, if the client does not know that you are considering an autism diagnosis, then some of the questions below would be inappropriate. In addition, many of the questions below are too sophisticated for a younger child. Use your clinical judgment as you consider the appropriateness of each question for each individual client. Examples of questions related to presenting concerns: • Why did you come in for this evaluation/​therapy? For kids, you might ask, “Do you know why your parents brought you in for this evaluation/​therapy?” • What would you like to discover about yourself ? • What would you like your life to look like? • What might you like help with? • What do you struggle with? For kids, you might ask, “What is hard for you?” • When did these problems start? • What makes you think that you might be autistic? (When the client has raised the possibility of autism in the referral question.) • What would a diagnosis of autism mean to you?

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• What makes you think that you might not be autistic? • Are there things that are hard for you that other people don’t know about? • What do you wish your parents/​spouse/​teachers/​employer knew about communicating with and supporting you? What do you wish they would do differently? Examples of questions related to social interactions: • How does it feel to talk with people generally? When is it comfortable and when isn’t it? • Do you do better one-​to-​one or in smaller or larger groups? • Who do you like to talk to, and what do you talk about? • Do people ever tell you that you don’t listen? Or that you interrupt? Or that you talk too much? Or that you are too quiet? • Do you feel that there is a “cost” to socializing for you? • Does it ever feel like other people have a built-​in manual for how to handle social interaction that you somehow missed out on? (While this is a fairly specific question, it reflects a very common feeling autistics have.) • Have you gotten feedback from other people about your style of interacting? If so, what was it? Did it resonate with you? Did it come from one person or multiple people? • Do you try to figure out the implicit (or unstated) rules of interactions? What happens if you can’t figure out the rules? • Have you noticed a pattern of difficulty connecting with other people? If so, can you help me understand the pattern? • Do you find yourself wondering why we follow some social norms, or do you find social norms annoying or illogical? • What were your parents’ stories about you? (From Dr. Theresa Regan)

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• How would you know if someone likes you, wants to interact with you? (This could also fit in the nonverbal communication section, depending on the client’s response) Examples of questions related to nonverbal communication: • Has anyone ever commented about the way you talk or move your body? • Have you noticed anything about how you use your voice, hands, face, or other parts of your body during conversation? • Have you ever been told that you don’t look people in the eye, or have you ever had trouble looking people in the eye? Does making direct eye contact with someone feel natural to you? Do you look at their eyes or at another spot, like between their eyes? • Do people find you “hard to read” or have they commented that you don’t show your emotions? • Do you find it “hard to read” other people? • Are you particularly sensitive to what other people are thinking or feeling? Examples of questions related to relationships: • Do other people seem to need more social connection than you? • Have you ever had problems getting along with people? How do you handle conflict? • Do you have some friends? (As in the parent interview, ask your client to “name names” as they talk about their friends, so that you can build your friendship map and compare their perceptions to others’ observations of their friendships.) • Describe your friendships, e.g., How did you meet? How often do you connect? What do you have in common? • How satisfied are you with the relationships in your life? • Have you ever felt pressured to want or have more friends?

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• What makes someone a friend or a best friend? How are they different from someone you just know? Examples of questions related to camouflaging: While camouflaging is not part of the diagnostic criteria, understanding a client’s camouflaging will give you insight into their experience of social interactions, and as such it merits its own section. • Can you tell me about a time when your outer behavior did not match your inner experience? How frequently does this happen? In what circumstances? • Do you ever use a script or a plan when navigating a social situation? Do you find it helpful or even necessary to rehearse what will happen ahead of time? • Have you ever studied or copied other people –​either people you know or characters from TV/​movies –​to get through social situations? • When or with whom can you completely be yourself ? • When do you use a script to navigate a social interaction? What would it look like and feel like if you didn’t use that script? • Are there behaviors that you force yourself to do or not to do in front of others? • Are you camouflaging now? How would you look and feel differently if you weren’t? Examples of questions related to repetitive behaviors/​ stimming: • What kinds of things do you do when you are stressed or excited? How about when you were younger? • Do you do or say anything over and over again, like a certain movement, song, word or phrase, or activity? Did you do this when you were younger?

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• Have you ever watched the same show/​movie, read the same book, or listened to the same song over and over and over again? • Have you ever made lists or spreadsheets, either more frequently or more extensively than most people, or for the sheer joy of making them? • Has anyone ever told you that your behavior or speech patterns were odd? If so, whom, when, and why? • Note: I often give multiple examples for this category, such as picking, pacing, making unnecessary but enjoyable lists or spreadsheets repeatedly, etc. (See the chapter on repetitive behaviors in Is This Autism? A Guide for Clinicians and Everyone Else.) Examples of questions related to flexibility: • How do you feel and what does your body do when things don’t go as you expected, wanted, or had planned? • How do you feel and what does your body do when you go somewhere new, start a new activity, or meet new people? • How do you prepare for or cope with something new? • Have other people ever called you very stubborn or even rigid? • Do you sometimes get stuck on thoughts, perceptions, or activities? • Do you feel strongly about morals/​justice/​fairness/​following the rules? • Do you try to do everything exactly right/​perfectly? • Do you make puns? Do you hear double-​meanings in things others say and riff on them? Even to the point of annoying others? Do you frequently point out ambiguity, even if you understand it? Examples of questions related to interests: • What are your interests? Are there things you really love to do, to think about, or to research? Can you reflect back on your childhood interests?

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• Are you an expert at anything? • Do/​did you have a hard time transitioning away from these interests to other tasks/​activities? • Have you ever been told that you engage in a particular activity or talk about a particular topic too much? Has anyone ever said that you have obsessions? • Describe what it is like when you get interested in something. Does it affect your eating, sleeping, ability to work, or interactions with others? Examples of questions related to sensory experiences: • Do you have any sensory sensitivities or interests? • Do you find it hard to focus when it’s noisy? Do you get agitated when there is more than one sound going on at once? • Are you bothered by: perfume or other smells? textures? human contact? How do you cope with this? (You may want to substitute items or add to this list, based on what you have learned about the client’s sensory experiences before you ask this question.) • Do you find yourself drawn to particular tastes, smells, textures, sounds, sights, or movements? • Are there certain experiences that make you feel overwhelmed? Do you need to leave certain situations? Which ones? • Are you prone to shutting down? What causes you to shut down? • How is your pain tolerance? Do you have any examples of it being particularly high or low? • Do you get hungry or thirsty very much? How does your body feel when you are hungry or thirsty? • How does your body feel when you’re happy/​anxious/​angry/​etc.? • Do you notice details, changes, movements, etc., that most people miss?, e.g., changes in temperature, a different kind of light bulb, or a slight change in the scent of your favorite brand of shampoo?

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• Have you ever felt or been called clumsy? Have you frequently gotten carsick or dizzy? Have you frequently tripped or fallen? • Have you been accused of being overly sensitive? When do people say this? Examples of questions related to positive experiences for the client: • Under what conditions do you do well? • What are your strengths? • What are your hobbies? • What memories make you feel happy? • Think about a time when you were really happy. What were you doing? Why were you so happy? • What do you like to think about? • How are you unique? Sarah has found Peter Vermeulen’s Autism Good Feeling Questionnaire (Revised Edition, 2021) to be a helpful guide for thinking about a client’s experiences. She recommends you scan through his questionnaire to see if there are questions in each domain –​Sensory experiences, Social experiences, Communication, Activities/​program, New things (changes & transitions), and Predictability creating activities –​that may be worth asking about during the client interview.

Frequently asked questions • What if a client sees themselves differently than other people see them? While many autistics are quite insightful about their strengths and weaknesses, others may be less aware. If this is the case, it is even more important to parse carefully through their narrative (i.e., their description of their current and past experiences) for examples that fit the diagnostic criteria. Obtain as much collateral input as possible. While the importance of the client’s

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inner experience is emphasized in this chapter, there are times when you will need to base your diagnosis more on others’ (and, of course, your own) observations. • What if a client does not want a diagnosis of autism? There is no easy answer to this question. The goal is for you and your client (or your client’s parents, in the case of a child) to be on the same page by the end of the feedback session. When this does not occur, it may be that (a) we got it wrong, or (b) a client or family member needs more time to digest the information that was presented or to review relevant resources to learn more about autism. If the client or parents remain opposed, you may decide to put off the diagnosis, i.e., to describe in the report the characteristics that you observed but to stop short of offering a diagnosis of autism, and instead to recommend that the client return for a re-​evaluation at a later time. There are occasions, however, when you may maintain the diagnosis even if the client or client’s parents are opposed, e.g., if the diagnosis is very clear and straightforward, and/​or the client would benefit from intervention or services that would only be available with a diagnosis. • What if a client is already convinced that they are autistic? Some adult or adolescent clients present already believing that they are autistic. They have often done a great deal of research on the subject and can frequently provide excellent insights and examples of how these characteristics have affected their lives. The process with these clients is the same as with any other client. Just as we do with a client who presents believing that they have ADHD or a learning disorder, we still need to do our due diligence by carefully considering the fit of the diagnostic criteria, as well as any relevant differential diagnoses.

References and related reading Geurts, H. M., & Jansen, M. D. (2012). A retrospective chart study: The pathway to a diagnosis for adults referred for ASD assessment. Autism: The International Journal of Research and Practice, 16(3), 299–​305. https://​doi.org/​ 10.1177/​13623​6131​1421​775

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Gillberg, C., Gillberg, C., Råstam, M., & Wentz, E. (2001). The Asperger Syndrome (and high-​functioning autism) Diagnostic Interview (ASDI): A preliminary study of a new structured clinical interview. Autism: The International Journal of Research and Practice, 5(1), 57–​66. https://​doi.org/​10.1177/​1362​ 3613​0100​5001​006 Happé, F. G., Mansour, H., Barrett, P., Brown, T., Abbott, P., & Charlton, R. A. (2016). Demographic and cognitive profile of individuals seeking a diagnosis of autism spectrum disorder in adulthood. Journal of Autism and Developmental Disorders, 46(11), 3469–​3480. https://​doi.org/​10.1007/​s10​803-​016-​2886-​2 Henderson, D., Wayland, S. C., & White, J. (2023). Is this autism? A guide for clinicians and everyone else. New York: Routledge. Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. L. (2012). Autism Diagnostic Observation Schedule, Second Edition (ADOS-​2). Western Psychological Services. (MIGDAS-​2) Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition. (n.d.). www.wps​publ​ish.com/​mig​das-​2-​monte​iro-​interv​iew-​gui​deli​ nes-​for-​dia​gnos​ing-​the-​aut​ism-​spect​rum-​sec​ond-​edit​ion Monteiro, M. J. (2016). Family therapy and the autism spectrum: Autism conversations in narrative practice. Routledge. https://​doi.org/​10.4324/​978131​5735​948 Skuse, D., Warrington, R., Bishop, D., Chowdhury, U., Lau, J., Mandy, W., & Place, M. (2004). The Developmental, Dimensional and Diagnostic Interview (3di): A novel computerized assessment for autism spectrum disorders. Journal of the American Academy of Child and Adolescent Psychiatry, 43(5), 548–​558. https://​doi.org/​10.1097/​00004​583-​200405​000-​00008 Vermeulen, P. (2014). The practice of promoting happiness in autism. In G. Jones & E. Hurley (Eds.), Good autism practice: Autism, happiness and wellbeing (pp. 8–​17). BILD Publications. (Download English version here: https://​pet​erve​ rmeu​len.be/​aut​ism-​good-​feel​ing-​questi​onna​ire/​) Williams, D. (1996). Autism: An inside-​out approach: An innovative look at the “mechanics” of “autism” and its developmental “cousins” (1st ed.). Jessica Kingsley Publishers. Wing, L., Leekam, S. R., Libby, S. J., Gould, J., & Larcombe, M. (2002). The Diagnostic Interview for Social and Communication Disorders: Background, inter-​rater reliability and clinical use. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 43(3), 307–​325. https://​doi.org/​10.1111/​1469-​7610.00023

Chapter 5

Record review and collateral interviews

It’s easy to breeze past record reviews and collateral interviews, particularly if the client or parents say that the report cards and prior evaluations “didn’t show anything.” However, these steps can be incredibly helpful, if not essential. This was never more clear to me than with a recent client, Talulla, a witty, kind, highly intelligent, and deeply caring 17-​year-​old. Throughout her life, Talulla has been diagnosed with ADHD, OCD, anxiety, sensory processing disorder, and Tourette’s disorder. However, Talulla’s parents have always wondered if she is autistic, and Talulla herself had recently wondered this as well. Talulla’s brother received an early diagnosis of autism, but her parents were repeatedly told that Talulla is not autistic. However, a review of her prior reports showed that Talulla had well-​ documented challenges with social interactions, flexibility, and sensory sensitivities throughout her life. Moreover, once autism was (inappropriately) ruled out, subsequent evaluators simply took that conclusion at face value. A close look at the prior reports yielded the following: When Talulla was five and her brother, Jonah, was three, they were both evaluated by their county’s department of health team. Jonah was diagnosed with autism, but Talulla was diagnosed with ADHD and OCD. The report literally stated that autism was unlikely because she was female. In 3rd grade, Talulla had a psychological evaluation with Dr. X because of extreme physical and emotional dysregulation at school. Her parents raised the possibility of autism during that evaluation. Dr. X completed the ADI-​R and noted that the scores in the realms of communication and restricted behaviors supported a diagnosis of autism, DOI: 10.4324/9781003403838-6

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while the score in the realm of social interaction did not. Yet the report documented significant difficulty in the domain of social interaction. Specifically, Talulla enjoyed playing with her friends but “needed to be in control of the script” and copied mannerisms of TV characters in her social interactions in “ways that are out of character and unsuccessful.” She could come across as “rude and inconsiderate,” not recognizing the impact of her actions on others. At school, Talulla typically dictated play and had difficulty when other children did not go along. Furthermore, she regularly attempted “to redirect conversation to her thoughts and topics of interest,” conversations tended to be “quite one-​ sided,” and she would talk “without regard for the interest of her conversational partner.” These behaviors were persistent and longstanding, despite years of parent social coaching. During the ADOS, Talulla did not respond when the evaluator attempted to join in conversation with her. Instead, “there would be a pause and then she would continue to speak from her internal thought process.” The report also noted that “Talulla did not respond to even obvious prompts to engage in a conversation” even around topics of interest to her. “The dialogue was quite one-​sided.” Though she was generally cooperative, Talulla became “immediately dysregulated at questions about emotions.” Talulla talked about being picked on at school, having difficulties getting along with friends, and feeling lonely at times. Additionally, the documented history indicated that, when Talulla was distressed, she flapped her hands, swung her arms, and was unresponsive to support. When younger, Talulla lined up her toys and insisted that no one touch or move them. She “lined them up more than engage in interactive play.” Talulla’s sensory sensitivities were significant; for instance she became “hysterical” when having her hair washed and sometimes had to wear headphones to drown out noise. She played basketball and at times when the buzzer sounded, Talulla would fall to the floor with her hands on her ears. She was also noted to have difficulty with ambiguity. For example, she needed to be notified about her schedule with two days’ notice, no more and no less. At times, Talulla made up words and said them repeatedly and she would also get “catchphrases” and “repeat them to an excessive degree.” Talulla’s language skills were well-​developed but she was noted to be “very literal.” Despite all of this, in the conclusion of the report, it was noted that autism spectrum disorder was ruled out. Dr. X wrote that, even though

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Talulla did “present the social cognition challenges and repetitive behaviors typically associated with autism, these difficulties are best explained by her anxious presentation, a distinct social communication deficit, and maladaptive coping strategies she has used in an attempt to manage anxiety.” The only diagnosis documented was OCD. Just four months later, Talulla was seen for a neuropsychological evaluation with Dr. Y because her parents were not satisfied with the prior evaluation. This report noted, “Talulla’s interactional style, prosody, and comments might be off-​putting to many individuals, although if persons can look beyond these features, it is truly possible to have and develop a wonderful dyadic conversation with her.” It is not clear from reading this report whether or not this evaluator truly considered the possibility of autism, and it is not clear to what they were attributing Talulla’s very significant social and emotional challenges, except that “this is the way her personality and associated behaviors are wired neurologically.” The only diagnosis was anxiety disorder NOS. At age 13, Talulla had a neuropsychological evaluation with Dr. Z, who noted the long-​term history of “extreme temper outbursts,” anxiety, inflexibility, “extreme, negative reactions” to certain sensory stimuli and persistent social struggles. Talulla was noted to be “rigid and controlling in peer interactions,” and she experienced an unusually high level of conflict with her peers, because “when she encounters dissonant ideas or actions in others, she tends to lecture.” Talulla was also noted to be “exceptionally literal in her thinking and interpretation of interactions.” During an interview, Talulla reported that she found it exhausting to be around people for long and that she needed to recover after social interactions. After being with others, even during an enjoyable activity, she often needed to be alone. The evaluators also documented several different manifestations of Talulla’s rigid thinking. They concluded that Talulla “has a very subtle degree of residual abnormality in functioning, principally affecting the left cerebral hemisphere,” which was said to be an indicator “of very mild neurodevelopmental deviation.” (Don’t worry if that doesn’t make sense to you –​it makes no sense to me either.) Regarding the social difficulties, the evaluator wrote, “It’s likely that other people don’t entirely make sense to Talulla, in part because she

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is unusually intelligent.” To be clear, Talulla’s WISC-​V Full Scale score was 120, with her highest Index score being her Verbal Comprehension Index at 133. There is no evidence that being mildly gifted at this level would lead to any of Talulla’s social or emotional presentation. Diagnoses included Tourette’s disorder, OCD, and other specified ADHD. Record review. Healthcare professionals generally enjoy interacting with people, so the phrase record review often doesn’t inspire great enthusiasm. However, private-​school report cards contain a wealth of information, often full of small but important comments, such as, “Sammy is making great progress interacting with peers during recess!” or “Charlie has an encyclopedic knowledge about dogs, and she loves to share her knowledge with the class every morning!” Of course, one or two comments like this may not be significant; it is helpful to (a) look for patterns in comments, and (b) ask follow-​up questions. Clients, parents, and teachers may not remember these details, particularly years later, but if you cue them with, “I saw in an old report card that Charlie loved dogs,” they may say, “Oh yes! We forgot all about that! She talked about nothing else for all of 2nd grade!” Dogs may have been an intense interest, and it also gives you an opening to ask whether there were any other interests that were similarly pronounced. Public-​school report cards typically offer fewer details, as they rarely include a written narrative, but they may still contain valuable information. Look less at the grades themselves (unless you are also evaluating for possible learning challenges), and more at the part of the report card that comments on skills such as cooperating with others, being respectful, problem-​solving, etc. It is also helpful to ask clients/​parents to provide copies of any other documentation that may be relevant, including occupational therapy or speech therapy reports (even if they are quite old), prior testing, school reports/​education plans, emails from teachers discussing concerns, etc. Parents sometimes remember little about these, including prior diagnoses, so it is quite helpful to look through them for information. I have even on one occasion found a prior diagnosis of autism that the parents were unaware of ! When reviewing old testing reports, look at the data and summaries, but also pay close attention to the documented histories. These are typically based on interviews with parents and teachers that were conducted at that

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time and often contain rich information that has since disappeared from everyone’s memories. Also look closely at the behavioral observations. For instance, in that section of prior reports, there may be comments about a child’s atypical interpersonal skills or limited range of facial expressions. This can be incredibly important in establishing a timeline of autistic symptoms before the onset of anxiety or depression. Finally, also note the documented goals from prior interventions. For instance, if a speech/​ language pathologist set a goal of increasing eye contact, that reflects an early history of difficulty with nonverbal communication. Bill’s parents brought him for an evaluation because they were concerned about his social isolation. They did not recall any early history of social concerns and instead reported that these issues began during high school. However, a review of Bill’s 504 plan from elementary school showed that his educational team had wondered if he was autistic and that they had administered the Autism Spectrum Rating Scales. Though the protocols completed by Bill’s parents were not significant, his general education teacher and his intervention teacher reported elevated concerns.

Nate was a profoundly intelligent 16-​year-​old. His parents, both of whom later self-​identified as autistic, did not report any history of social concerns. However, the record review told a different story. At age four, Nate was seen by a developmental pediatrician who noted poor eye contact, limited play skills, and “nearly obsessive interests in fountains, construction, garbage trucks, stoves, fireplaces, and automobiles.” In addition, Nate had “extensive knowledge and skill at recognizing makes of cars,” with a particular focus on exhaust pipes. Moreover, a psychological evaluation conducted at the age of eight documented an “atypical social manner,” a lack of reciprocity in conversation, and uncommonly low social motivation. Similarly, during 6th grade, a school psychologist noted Nate’s poor peer interactions, stating that he was able to verbalize social norms accurately but was persistently “reluctant to comply” with those norms.

Teacher interviews. I am in awe of teachers. I regularly call teachers and ask them about students whom they’ve taught, either recently or long ago, and somehow they always remember them! If time

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allows, I recommend speaking to a current teacher, as well as one from the past, particularly for older students. When working with a middle or high schooler, ask the client/​parents which elementary school teacher “got” them, and call that person. I have never had a teacher say, “I just don’t remember that student.” Teacher interviews are essential, even if they completed rating scales, because (a) there is no substitute for hearing the narrative about how a student presents or presented in class, and (b) teachers are sometimes understandably cautious about putting observations in writing and may be more open when they can explain their observations in a more nuanced way. When interviewing a teacher, it is not necessary or advisable to tell them the purpose of the evaluation or reason for therapy, simply that you are working with so-​and-​so, and that you’d love to hear what they are like in the classroom. Open-​ended questions are advised, particularly at the beginning of the interview. Begin with, “Tell me about him/​ her/​them.” Ask, “What are his/​her/​their strengths?” and “What concerns did/​do you have?” Ask the teacher to talk about the student’s academic skills as well as their social-​emotional functioning. Ask them to tell you a funny or interesting story about the student, or their most striking memory of them. In addition to asking open-​ended questions to encourage the teacher into storytelling mode, it is important to ask more pointed questions to differentiate between actual observations and a teacher’s assumptions about those observations. Remember, the narrative is not the data; the narrative gives you clues to the data. For instance, if a teacher says that a student was anxious, ask, “What makes you say that? What did you see?” If a teacher reports that a student had good (or poor) social skills, ask again, “What makes you say that? What did you see? Can you give me an example?” Always try to elicit specific observations, in part to make sure that you are collecting valid data but also because those examples will help you explain your conclusions. Hope, a 4th grader, was described by her teacher as a student with low confidence.When asked to speak more about that, the teacher responded, “She never says hello and sometimes doesn’t even respond when others say hello. She also doesn’t make much eye contact.”

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Similarly, after asking the teacher to talk a bit about the student’s friendships, it can be helpful to follow up with more specific questions about their friends, asking them to describe the student’s friends and relationships. This can be very helpful in uncovering patterns, e.g., if the student is always friends with someone who has special needs, with someone who is either domineering or passive, or with other kids who may not be socially typical. When interviewing private-​ school teachers, it is helpful to ask how the student might do in a public school. This is particularly helpful if the private school has a small student population, if the student population includes many quirky students, or if the environment is otherwise unusually supportive. If the teacher says, “Oh no! This student would not do well at a public school!”, follow-​up questions can uncover social vulnerabilities that are being accommodated in the private-​school environment. Look for multi-​g rade patterns by asking teachers, “Had you heard things about this student from other teachers before or while you had him in your class?” This gives the teacher an opportunity to tell you what other teachers, including art/​music/​PE teachers, have observed, which can bring patterns to light and can also give you information about how the student functions in less structured classes. Always ask teachers about the child’s support needs, both academic and social/​emotional. You can ask if there are supports the child has that seem unnecessary, and also if there are supports that should be added. It is also helpful to ask, “Under what conditions does this child thrive?” In addition, allow teachers to tell you things “off the record” if there is something they are hesitant to say. When you do this, teachers may give you useful observations about the parents and family dynamics. While this information would not go into a report, it can help you understand the family and better tailor your communication with them, as well as your recommendations. Teachers will also sometimes offer a diagnosis that they’ve wondered about if they feel they can speak off the record. If they bring up autism, it allows you to ask why they’ve wondered about that. A helpful way to end the interview is to explicitly ask about strengths and then ask the teacher, “Is there anything we haven’t talked about that I should know?” or “Is there anything we haven’t discussed that you’d like to bring up?”

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Other collateral interviews. When evaluating children or teens, parent and teacher interviews are often sufficient. However, if there is still not a clear sense of what the child is like in different settings, it can be helpful to interview other adults, such as a coach, troop leader, extended family member, or parent of a friend. The key is to interview someone who has observed the child interacting with peers in fairly unstructured situations. Another reason to do collateral interviews is to assess the individual’s environment so you can speak to their support needs (i.e., how can you adjust the environment to better support the individual). Other collateral interviews are also sometimes necessary when evaluating adults, particularly if there is not a family member to interview. To identify an interviewee, simply ask the client who in their life might have a good sense of who they are and particularly what they are like in social situations. It can be helpful to clarify to the client, and to the interviewee, that this is a one-​way conversation; you will be asking questions of the interviewee but are not giving any information at all, including the reason for the evaluation or therapy. This reassurance can help an adult client feel comfortable giving permission for collateral interviews. Collateral interviews with adults can include employers, former employers, coworkers, spouses, former spouses, friends, siblings, spouses of siblings, or even a sensei! During collateral interviews, begin with open-​ ended questions, such as: • Tell me about this person. • Have you ever noticed anything about them that has caused you concern? • What are they like in social situations? • Tell me the most memorable interaction you’ve had with them. • How do others typically respond to them? • What is something that would surprise me about them? • What are his/​her/​their strengths? As with the teacher interviews, follow up relevant observations with specific questions. For instance, if an employer says, “He’s not a self-​ starter,” “She doesn’t follow instructions well,” or “They have trouble

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connecting with their coworkers,” ask for specific examples or stories. And always end with, “Is there anything I haven’t asked about that you think I should know?” Mr. Carney was a 50-​year-​old college graduate who had struggled for as long as he could remember with social skills and communication, emotion regulation, self-​esteem, depression, and social anxiety. His psychiatrist raised the possibility of autism and recommended an evaluation. The first neuropsychologist who evaluated him noted that Mr. Carney was pleasant but “required continued effort to maintain rapport.” His speech “had a monotone quality to it, and he frequently paused for longer than typical lengths of time.” In addition, for “most of the evaluation he presented with a flat affect.” She concluded that he had “cluster C traits of socialization difficulties, dependence, avoidance, and restricted emotional expression, but not autism […] [because] autism includes specific developmental delays, particularly in language development,” which were not evident in Mr. Carney’s history. No social cognition testing was completed, and no collateral interviews were attempted. When Mr. Carney came to me for a second opinion, a collateral interview with his ex-​wife yielded many specific examples of Mr. Carney’s difficulty reading social cues, his remarkable gullibility, his repetitive behaviors, his deep “obsessions” with certain topics, such as the 9/​11 commission, and his inability to make friends. Additionally, Mr. Carney’s sister reported that, even as a child, he had persistent difficulty “being able to relate to people, interact with people, [and] have friends.” She recalled her mother seeking a diagnosis and help for him throughout his childhood and adolescence. Social cognition testing indicated significant difficulty reading social cues and perspective taking, i.e., “getting in someone else’s head.” Overall, there was clear and convincing evidence from multiple sources throughout his life that Mr. Carney was indeed autistic. He sobbed with relief and validation when given the diagnosis.

Frequently asked questions • What if the client or parents do not want me to do any collateral interviews? Ultimately, of course, the client/​parents have the right to refuse to give access to collateral interviewees.

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When they show hesitation, try to understand their reasons. They may be concerned about confidentiality, in which case they are sometimes more comfortable when reminded that you will give no information at all to interviewees. They may be concerned about what a potential interviewee may say, in which case you can remind them that it is your goal to help them understand themselves or their child, that the more information you have the better, and that this is a unique opportunity for them to get honest feedback that they might otherwise never have access to. Finally, some clients/​ parents feel that collateral interviews are a waste of time, because they believe that the interviewees would not have anything of substance to offer. In these cases, you can tell them that you are willing to “waste” your time, and that you much prefer to be thorough. • What if the client or parents do not want me to see prior records? Sometimes the client or parents simply do not have easy access to prior documentation, and they may be overwhelmed by the thought of having to “hunt it down,” either by facing their own basement or by having to make phone calls to prior healthcare providers. In these cases, tell the client/​parents, “I’d love to see anything you can lay your hands on, even if it is disorganized or incomplete.” In other cases, however, clients or parents have access to documents but do not want to share them. In those cases, try to understand their reasons. Sometimes there is a prior diagnosis that they don’t agree with, and they are concerned that the prior diagnosis will bias the current assessment (a reasonable concern, in my opinion). Seeing prior documents is very helpful, but it is not worth risking the loss of the client’s trust and faith in your conclusions. Therefore, in these cases you might agree to forego the document review, at least until you’ve offered preliminary conclusions. • What if there is no sign of autism in the record review or collateral interviews? That does not preclude the possibility of autism for a number of reasons. For one thing, the characteristics of autism may not fit within the interviewee’s stereotyped perception of autism. For example, I have had very experienced teachers (“I’ve been teaching for 25 years”) report that they do not see any signs of autism while also describing the child as a student who does not

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have any particular friends and who is prone toward unwittingly behaving in ways that other children find off-​putting. Moreover, as previously noted, autistic individuals often do very well in one-​to-​ one, structured environments with supportive adults (e.g., a therapist, evaluator, psychiatrist, primary care doctor, speech/​language therapist, or occupational therapist). For these reasons, the record review and collateral interviews, just like each other element of the assessment, should be considered as one data point among many.

References and related reading Carbone, V. J., O’Brien, L., Sweeney-​Kerwin, E. J., & Albert, K. M. (2013). Teaching eye contact to children with autism: A conceptual analysis and single case study. Education and Treatment of Children, 36(2), 139–​159. https://​ doi.org/​10.1353/​etc.2013.0013 Duvall, S., Armstrong, K., Shahabuddin, A., Grantz, C., Fein, D., & Lord, C. (2021). A road map for identifying autism spectrum disorder: Recognizing and evaluating characteristics that should raise red or “pink” flags to guide accurate differential diagnosis. The Clinical Neuropsychologist, 36(5), 1172–​1207. https://​doi.org/​10.1080/​13854​046.2021.1921​276

Chapter 6

Rating scales and self-​report measures

There are now countless rating scales and self-​report measures relevant to social cognition evaluations. (Literally, I tried to count them but kept coming across new ones.) Thus, a review of all or even most of these is not feasible. Instead, this chapter offers a few general guidelines about choosing and using these measures and will highlight a few that I currently find useful. My overall advice regarding these measures is to proceed with caution, not only in selecting measures but also in how they are used.

General principles Research rating scales before using them. Pay attention to the original normative group; many older scales were normed on groups with mostly boys and fewer girls, with younger children, and/​ or with children with clearly observable autism rather than less obvious autism. If the normative group did not include individuals with a less obvious presentation of autism, then the measure will not be as sensitive to this population. Also consider the original intent of the measure. For instance, the Social Communication Questionnaire (SCQ), which is widely used in diagnostic evaluations, was created to be a screening measure, not a diagnostic measure. Before using a scale, read the items to make sure that they make sense, are written to capture less-​obvious as well as more-​obvious autism, and are neurodiversity-​affirmative. Finally, consider to what extent the items reflect outdated or inaccurate perceptions of autism (e.g., “They do not care about having friends”). When looking into these issues, do not simply read information on the publisher’s website. Rather, look at the actual research, including DOI: 10.4324/9781003403838-7

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research conducted by people other than the measure’s authors, when possible, and talk to trusted colleagues about their experiences with the measure. Before using any measure with clients, review the items to determine if they reflect the entire spectrum of autism or if they focus on outdated stereotypes. For example, if a parent or teacher form asks, “Is the child interested in unusual objects or topics, such as lights, traffic cones, or paper clips?”, this is focusing on the traditional presentation of autism and is likely to miss an individual with a typical but intense interest (such as a girl who is obsessed with Warrior Cats). Other examples include asking if the individual has low empathy, is fascinated by spinning wheels, or repeatedly likes to open and shut doors. Do not translate scores directly into diagnoses. Significant scores on rating scales are important information but do not directly translate into a diagnosis. If someone meets a cutoff score or gets a score in the autistic or impaired range, this does not automatically mean that they are autistic. Similarly, if someone gets a score below the cutoff, or in the non-​autistic range, autism should not be automatically ruled out. As an example of some of these issues, let’s discuss the widely used Social Communication Questionnaire (SCQ), mentioned above. My intention here is not to criticize this useful measure, but to highlight some concerns about the manner in which it is sometimes used. The SCQ , published in 2003, is a parent/​caregiver questionnaire with 40 yes-​or-​no items that are based on the ADI-​R. The initial recommended cutoff was 15, regardless of age, gender, intellectual functioning, verbal skills, or any other variable, and I have seen numerous clinicians interpret a score of less than 15 as proof that a client is not autistic. This is not the authors’ intention. This was a suggested cutoff for a screening, to consider the necessity of further evaluation. As Cory Shulman and her colleagues note, “screening should be the first step leading to a more comprehensive diagnostic evaluation, but too often it is used in place of a complete evaluation and is related to as a diagnostic process rather than a beginning step.” Additionally, subsequent studies have recommended lower SCQ cutoff scores for some populations. For instance, in a study including individuals aged 1 to 25, Lucy Barnard-​Brak and her colleagues recommend a cutoff score of 10 for a possible diagnosis of autism,

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which is consistent with the cutoff score recommended by other researchers. Other studies have recommended a cutoff of 11, though many of these have focused on preschool-​aged children. In my clinical experience, as children get older, parents have a harder time answering the many questions that begin with “When your child was 4 or 5 years old…”, often skipping questions or simply selecting the most innocuous response if they cannot remember clearly. Linda Eaves and her collaborators suggest that an adjusted cutoff score should be considered when parents omit items. Finally, Matthew Hollocks and his coauthors report that “Scores on the SCQ are not significantly related to the outcome of the diagnostic process” and that “The SCQ cutoff score performed a little better than chance level” in clinical settings. Dr. Hollocks and his colleagues agreed with other researchers that the specificity and sensitivity of this measure appear to be lower than initially reported. As such, the SCQ is best used to identify young children in need of further evaluation, exactly as the original authors intended. Remember –​autism cannot and should not be either diagnosed or ruled out simply because someone does or does not meet a suggested cutoff on any single measure. Gigi, an enthusiastic and highly creative 7th grader, was a fervent supporter of the underdog, and she loved to help others. Gigi had persistently struggled with anxiety, depression, understanding social situations, and maintaining friendships. She did not grasp the subtleties of situations, implicit social rules, or other people’s points of view. She made friends easily but always had difficulty maintaining friendships, and despite her best efforts, Gigi had never had a best friend. She had repetitive speech and motor movements, rigidity that had been documented by teachers as early as kindergarten, intense interests in Irish dance and makeup, and a whole host of sensory sensitivities and sensory craving behaviors (e.g., tasting deodorant). Over the years, Gigi had been diagnosed with generalized anxiety disorder, social anxiety disorder, OCD, and major depression, but she and her parents wondered if autism was at the root of her struggles. They went to a neuropsychologist who listed autism as one of her specialties.They were shocked when the doctor told them that, even though Gigi seemed to meet

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the criteria, she did not think Gigi was autistic. Her reasoning? She told them that Gigi’s eye contact was not “sufficiently impaired,” and her report noted that the Social Communication Questionnaire score of 14 “did not meet the cutoff for autism spectrum disorder.”

Whenever possible, give rating scales to at least one family member and one other informant (in addition to self-​report measures). For children, this is almost always a parent/​guardian and a teacher. For adults, having two family members, friends, coworkers, etc. complete the forms can be helpful, particularly if there is suspected autism in the family. It is important to use rating scales with the client and at least one other informant, in part to understand where the client stands in comparison to age-​related peers and in part as a basis for further interviewing. Asking informants who each interact with the client in different contexts will provide a more well-​rounded view of the person. Consider the context. Be aware of the context in which each rater sees the client. For instance, if the client is a student in a specialized private school with extra supports and small class sizes, the teacher completing the rating scale may not indicate what that student would be like in a typical classroom. In these cases, it is essential to do a follow-​up interview with the teacher to understand how they think this student would do in a typical public-​school environment. Similar situations include: • A parent or spouse who is unknowingly autistic and has an atypical perspective on social interactions, • The child is homeschooled (and not part of a homeschool community), or • The child has an older sibling (or other family member) with profound support needs, and is less impacted by comparison. Also, note when the person completing the form has not observed the client in unstructured social situations, e.g., a high school teacher who runs a highly structured classroom. Likewise, if the scale is being completed by a friend of an adult client, it will be important to know how frequently they interact in person or with others.

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Interpret self-​report questionnaires with caution. Because some autistics have difficulty identifying and labeling their emotions (as noted by authors such as Dorit Ben Shalom and colleagues, as well as Sylvie Berthoz and Elizabeth Hill), it has been suggested that self-​ report measures should be interpreted with caution in this population. The limited research on this is mixed, but some authors, such as Carla A. Mazefsky and colleagues, do suggest that at least some autistic individuals have difficulty identifying and discussing their emotional experience. Typical self-​report measures of co-​occurring symptoms may therefore have lower sensitivity or specificity in autistics, compared to the general population, even with alternative cutoffs. This is not to say that autistics are incapable of insight or valid self-​report. While insight and valid self-​report can be difficult for some autistics (and for some non-​autistics), these measures are designed for and normed largely on non-​autistics and for this reason should be interpreted with caution. Based on my clinical experience, there are three areas to be aware of in regards to interpreting self-​report questionnaires with potentially autistic clients: over-​reporting, under-​reporting, and vulnerability to misinterpretations. Be attuned to over-​reporting. When discussing your clients’ responses on self-​report measures, look for possible over-​reporting. While this can also be true in the general population, some autistic individuals endorse items because of their difficulty intuitively understanding the intent of those items, perhaps due to a higher need for explicit context. For example, during a recent evaluation, a 16-​year-​old endorsed an item that read, “I am being plotted against.” When asked about this, the client explained that he and his parents were in the midst of an argument with his school about whether he should be allowed testing accommodations. When the intent of the item was clarified for him, he changed his response. One or two occurrences like this are likely unimportant, but if there is a pattern of over-​responding, it will certainly invalidate the scores (but nevertheless provide you with important information about the client’s experience in the world). Additionally, some autistics are unusually tuned in to their bodies, which can lead them to endorse an unusually high number of symptoms on some self-​report measures.

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Also be aware of possible under-​reporting. Similarly, some researchers, such as Susan White and her colleagues, have found evidence that some autistic individuals may under-​report their own symptoms relative to collateral reports. This is consistent with my clinical experience. One key reason for this may be the relatively high prevalence of low interoceptive awareness in autistic people. For example, if a client is not aware of physiological signals that indicate anxiety, or if they are aware of the cues but do not associate them with anxiety, they are vulnerable to under-​endorsing symptoms of anxiety on self-​ report measures. I have encountered quite a few autistic individuals who are described as anxious by those who know them, but who do not themselves express the experience of anxiety on self-​report measures. When this occurs, look for the possibility of low interoceptive awareness, in addition to assessing the client’s general insight and also the possibility that those around them do not accurately understand their inner experience. Check for item misinterpretation. Always look at the actual items and responses for each individual. If possible, rating scales should be completed before you conduct interviews, so that you can review the completed scales ahead of time and then ask about any noteworthy or confusing responses. Of course, scales are sometimes not completed before interviews occur; in these cases, you can either schedule a brief follow-​up interview to review rating scale responses or, if there are only a few questions, send an email requesting clarification. Remember, the information in the responses is just as important, if not more important, than the scores themselves. Scores are not the only form of valid data. Examples of misinterpretations on various measures. As noted above, autistic clients sometimes misinterpret items on self-​report measures. Though I have not seen any research on this, I observe patterns of these kinds of misinterpretations far more often with my autistic clients than my non-​autistic clients, and I feel that many of these misinterpretations result from their higher need for explicit context. Following are some examples of these kinds of misinterpretations (see Table 6.1).

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Table 6.1 Examples of misinterpretations Item endorsed

Possible clinician interpretation

Client’s explanation

I have to check things OCD several times or more.

I check my answers on quizzes, because sometimes I make mistakes.

I have to repeat things until it feels just right.

OCD

I practice my tennis swing every day.

Even when alone, I feel like someone is watching me.

Paranoia

We have a ton of windows in our house, and the neighbors can see in if they are nearby. Like right now my dad just walked by.

I am not sure if things Pessimism, will work out for me potentially as part (rather than things will of depression. work out OK for me).

Nobody can tell the future. When asked about her degree of optimism/​ pessimism about her life, the client replied, “I’m relatively sure things will work out well for me.”

I sometimes hear things that others don’t hear.

My hearing is really sensitive, like right now the ticking of your clock is distracting me, but most people don’t notice that stuff.

Hallucinations.

Spencer, age 20, had a “psychotic profile” on the MMPI-​ 3. However, here are some examples of Spencer’s endorsed items, along with the explanations they offered in follow-​up discussion: • I am sure I am being talked about. “My parents have always talked about me and my siblings loudly in a room when they think they’re being quiet and we always hear what they say about us and end up feeling hurt.” • I have seen a vision. “I get gut feelings about things. I have visual thoughts constantly but I don’t call them visions.”

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• At one or more times in my life, I have felt that someone was making me do things by hypnotizing me. “This is how I feel about the whole system. It all feels like mind control that we’re trying to get free of: school, government, the way we constantly worry about money, it feels like they’re hypnotizing us to keep us in the system. This also applies to organized religions.” • I hear strange things when I am alone. “This is not hallucinations; more like hearing screaming from earlier in the day replay in my head because it was overstimulating me so much and it’s all I could hear at the time.”

Consider changing the wording as needed. With some clients, particularly those who do not intuitively use context to interpret items, it may be helpful to suggest a slight wording change as they complete self-​ report measures. For example, they might find it helpful to add the word “generally” before each item, so they would read “I avoid eye contact” as “Generally, I avoid eye contact.” This can help them focus more on what is generally true for them, and less on the exceptions (e.g., “But I like making eye contact with my dog.”). Stay with the client while they complete self-​report measures. While many adolescent or adult clients can complete these measures at home, autistic clients may have a lot of questions, require unusual clarification, and/​or feel a need to offer you detailed explanations of their responses. For these reasons, it is often less stressful for them and more informative for you if you are present while they complete these scales. Strive to understand discrepancies between raters. Discrepancies between self-​report and informant reports can occur for a variety of reasons; some of which are listed in Table 6.2. Remember, each rating scale is simply a way of collecting information and is only one source of data. Sometimes we testing professionals get cases where all of the data –​the history, scales, self-​report measures, and test results –​are completely consistent with each other. We all love those cases! However, all too often our data appear inconsistent. This happens for many reasons. For instance, many bright autistic girls “hold it together” at school and fall apart at home. These girls are particularly likely to fly under the radar in high school, where teachers only see them for brief periods each day; in these cases,

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Table 6.2 Examples of reasons for discrepancies Client forms reflect

Parent forms reflect

Teacher forms reflect

Consider

Anxiety

No anxiety

No anxiety

The client is masking their anxiety and/​or they do not show anxiety in the typical ways (e.g., they freeze or get angry when anxious).

No depression

Depression

Depression

Parents and teachers are responding to flat or blunted affect as well as limited social interaction. The client may be depressed but they may also be non-​depressed and autistic.

Autistic traits

Autistic traits

No autistic traits

The client may be masking at school. When children mask well at school and fall apart afterwards, parents are sometimes perceived as being poor parents or as exaggerating.

Autistic traits

No autistic traits

Autistic traits

The parent may have a different frame of reference for what is typical because (a) the parent may be autistic themselves and not know it, (b) the child may be a first-​born or only child, or (c) there may be cultural differences.

it is not at all unusual for their teacher scales to be completely benign and for parent scales to be highly significant. In contrast, there are cases where elementary-​school teacher scales may be highly significant while parent scales are benign. I often see this with only or first-​born children and also with children of parents who are socially quirky themselves.

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There are also cultural considerations; these are discussed below. This is one of the many reasons why you need multiple sources of information. Overall, there seems to be consensus (and common sense suggests) that a single report should be viewed with caution and that combining rating scales with other data points provides the highest predictive value.

Connecting culture Cultural differences may impact responses on scales. For example, an item on a scale designed to assess anxiety may ask whether the child sleeps with their parents, but children from some cultures typically sleep with their parents for a longer time than children from other cultures. Additionally, an underlying challenge with the validity and reliability of rating scales is the ethnic/​racial representation in the normative groups. For example, Jussila and colleagues’ study of the SRS-​2 revealed the possibility of a high number of false negatives in a Finnish population. Until assessment tools are modified to be more culturally inclusive, clinicians must use them with appropriate caution, considering the cultural background of each client.

Examples of social cognition rating scales and self-​report measures: Following are brief descriptions of some rating scales and self-​report measures that I find useful. Only measures that are directly related to social cognition are included. Social Responsiveness Scale (SRS-​2). The SRS-​2 is one of my preferred rating scales for a social cognition assessment. Published in 2012, the SRS-​2 has several versions: a preschool form, a school-​aged form, and an adult form. The preschool forms (ages 2.5 to 4.5) and the school-​age forms (ages 4–​18) are completed by parents and teachers. The adult version has self-​report and collateral report forms. The SRS-​2 measures the respondent’s perception of observable behaviors that are typically related to social challenges and repetitive or restricted behaviors. What do I like? The SRS-​2 breaks down social concerns into five areas: social awareness, social cognition, social communication, social motivation, and restricted interests and repetitive behaviors. I find the subscales a useful framework in which to consider an individual’s social profile. I have found the SRS-​2 to be sensitive to subtle social challenges,

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and I feel that items are worded in such a way that they are easy to understand and do not tend to be confusing or misinterpreted. I also find the SRS-​2 easy to score, and I appreciate that it offers separate norms for male and female clients. But please be aware: The SRS-​2 is reasonably good at wording most items in a neurodiversity-​affirmative way. Still, as Drew R. explains, “Like a lot of these self-​report instruments, it requires us to know what other people are thinking. Some items cannot possibly be accurately self-​rated, since they require a comparison between what we think other people are thinking, and what other people are actually thinking” (italics added). For example, I am usually aware of how others are feeling or I behave in ways that seem strange or bizarre to others. Additionally, some people express concern that the SRS-​2 is insensitive to less obvious autism, because of items that ask about challenges such as hygiene, the ability to imitate others, etc., while others have noted that some non-​autistic people can receive high scores on the SRS-​2. Finally, ideally the next version will include norms for trans and non-​ binary individuals. Autism Spectrum Quotient (AQ): This group of scales was developed by Simon Baron-​Cohen and his colleagues and is available for free on the Autism Research Centre’s website. The adult version is a self-​report measure for ages 16+​. The adolescent version, for ages 12 to 15, and the child version, for ages 4 to 11, are completed by a parent or guardian. This measure is specific to autism in that it assesses the extent to which an individual has autistic traits. The authors specify that it is intended for use with individuals who have some speech as well as intellectual functioning of 70 or above. The measure is available in many languages. What do I like? I have found the AQ to be written in a way that is clear and does not seem to result in many misinterpreted items. I feel that most of the items are written in a neurodiversity-​affirmative voice. I have found that the AQ scores almost always match my clinical perception of whether or not a client is autistic. I like that clients can either definitely or slightly agree or disagree with each item, as this provides flexibility that some rating scales do not offer, and some autistic people have a harder time with scales that do not afford that flexibility. But please be aware: There are a few items that seem to rely on outdated perceptions or are overly specific (e.g., I am fascinated by dates),

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and there are no gender-​based norms. In addition, I generally dislike suggested cutoffs, not because they are not statistically sound at times, but because suggested cutoffs can result in misunderstanding and misuse. Ritvo Autism Asperger Diagnostic Scale-​Revised (RAADS-​ R): The RAADS was originally introduced in 2008, with the RAADS-​ R following in 2011, and validated at nine research centers on three continents. It is a self-​report measure that is designed to be administered by a clinician in a clinical setting (so the clinician can provide clarification as needed about the intent of specific items). The RAADS-​R is designed for individuals aged 18 and over who have average to above-​ average intellectual functioning (stated as an IQ of 80 or above). The RAADS-​R contains 80 items, with four choices per item: (1) true now and when I was young; (2) true only now; (3) true only when I was younger than 16; and (4) never true. The RAADS-​R is free to use. What do I like? The RAADS-​R was specifically designed to address the major gap in screening adults with average to above-​average intellectual functioning. The authors write that the questions are designed for individuals who have “mild or subclinical [autism],” noting that “these individuals often escape diagnosis. The RAADS-​R was specifically designed to capture that population.” I particularly like that the RAADS-​R allows clients to specify whether something was true in the past, present, both, or never. This is something that is unique about this measure and is important for this population. Though the RAADS-​R is based on DSM-​IV criteria, which did not include a sensory criterion, there are 11 questions that pertain to sensory differences. Like the AQ , most of the items are written in a way that is nonjudgmental and easy to understand. Finally, in my clinical experience, the RAADS-​R is good at discriminating between autistic and non-​autistic adults. But please be aware: In my opinion, there are a few items that come across as pejorative and/​or are based on an outdated understanding of autism, such as I usually speak in a normal tone, I like to have close friends, I am an understanding type of person, and I am considered a loner by those who know me best. There is only one suggested cutoff score regardless of gender, though that has not been problematic for the non-​male clients in my practice. The RAADS-​R is relatively long, with 80 questions, which some clients may find tedious. Also, it took me some time to develop a methodical scoring system, though once I did, scoring became

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quite efficient. This measure is only for adults, and I would love to see a (briefer) adolescent version with norms, as well as norms for people across the gender spectrum. Camouflaging Autistic Traits Questionnaire (CAT-​Q): The CAT-​Q was introduced by Laura Hull and her colleagues in 2018. It is a self-​report research measure for individuals aged 16 and over. It includes 25 questions, each with a Likert scale ranging from strongly disagree to strongly agree. The CAT-​Q does not assess autism per se; rather, it is used to identify camouflaging of autistic traits. That said, many individuals who persistently work hard to camouflage autistic traits are likely autistic, and this measure offers a means of identifying these individuals, who might otherwise elude diagnosis. What do I like? I love that the CAT-​Q is based on the lived experience of autistic adults, particularly those who are at high risk for being misunderstood as non-​autistic. The CAT-​Q is based largely on reports from autistic adults, many of whom received their diagnoses in adulthood, rather than childhood, so it is designed to be particularly sensitive to this hard-​to-​recognize population. I also like that the CAT-​Q encourages clinicians to formally assess and investigate camouflaging as a key component of an individual’s presentation. This measure offers a great opportunity for conversation, and asking about the individual’s responses can yield rich information about a person’s experience of social interactions. The CAT-​Q may thereby help you understand lower scores on traditional measures designed to assess autism. Finally, I appreciate that the CAT-​Q offers data for males, females, and non-​binary individuals. But please be aware: The CAT-​Q measures camouflaging, and there can be reasons for elevated camouflaging other than autism. I have not found the subscales (assimilation, masking, and compensation) to be particularly useful, though it is interesting that there is generally less of a difference between autistics and non-​autistics in masking than in assimilation or compensation. I also look forward to seeing data for individuals who are transgender. The CAT-​Q is a research measure and, as such, no norms are available. However, I have found it useful to compare an individual’s total scores and mean item scores to the available data on autistic versus non-​autistic respondents. The CAT-​Q is presumably best for those who camouflage and who have the insight, language, and desire to self-​reflect and report on their camouflaging. Finally, as with

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the RAADS-​R, it did take me some time to develop an efficient scoring system for this measure. Childhood Autism Rating Scale, High Functioning (CARS2-​ HF): There is a Standard Version of the CARS2, but for the population discussed in this book, I typically use the High Functioning version (though hopefully when this measure is updated the phrase high functioning will be removed). The CARS2-​HF can be used for clients aged six and older with an IQ of 80 or higher. This measure includes 15 items on which the examiner rates the client from 1 (entirely typical) to 4 (severely atypical). The scores are added to obtain a raw score. What do I like about the CARS2-​ HF? The CARS2-​ HF is unique in that it is a rating scale completed by the examiner and offers the opportunity to incorporate all of the information about the client, regardless of the source (e.g., data from the history, prior documentation, other rating scales, self-​report measures, the client’s self-​report, test scores, and behavioral observations). I also like that the clinician is instructed not to consider causal explanations, which likely helps limit diagnostic overshadowing (e.g., a clinician disregarding poor eye contact because “it may just be due to anxiety”). Thus, the CARS2-​HF is a way to organize the data collected and integrate it into meaningful categories. I have found that the CARS2-​HF correlates well with my clinical judgment. But please be aware: Like many instruments, the development sample for this measure was mostly male. Additionally, as noted above, I am cautious about the use of a raw score with one suggested cutoff regardless of age, gender, culture, etc. It is the responsibility of the clinician to be cautious about the use of a cutoff score when interpreting this (or any) scale. It bears repeating: Rating scales do not diagnose; we do.

Other measures that may be helpful as part of a social cognition evaluation: Comprehensive measures. It is standard practice to administer a measure designed to give a high-​level overview of a client’s challenges, such as the BASC3 or the Achenbach system. The Achenbach system has a variety of self-​report measures and informant rating scales for all ages (one year and older). The BASC3 has self-​report measures for ages 8 through 25, as well as parent and teacher rating scales for ages 2

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through 21. I have used both of these scales extensively and find them to be useful “big picture” snapshots that provide direction for interviews. I particularly appreciate the BASC3 for children, teens, and young adults with possible autism. Adaptive function scales. Adaptive functioning can be significantly lower than intellectual functioning in autistics. It can be particularly helpful to get a sense of adaptive functioning for adults, who may not have built-​in family support and may qualify for life skills, vocational, or other support services. Two widely used options are the Adaptive Behavior Assessment System (ABAS-​ 3) and the Vineland Adaptive Behavior Scales (Vineland-​3). I do not have a preference between these two scales and have found them both to be useful. I do informally find that, with either of these scales, informants are sometimes at risk of overestimating the client’s adaptive skills, giving them credit for skills that actually require support, scaffolding, or verbal reminders. It is helpful to caution informants to take special care to respond to each item as though the client were entirely alone, without reminders or assistance. Additionally, the informant is to consider the actual independent performance of an activity, not simply whether or not the individual is capable of performing it. Executive functioning measures. Typically, a thorough evaluation will also include measures of executive functioning (EF), such as the BRIEF2 or BRIEF-​A. These widely used scales, published in 2015, measure perceptions of a client’s EF in day-​to-​day life. The BRIEF2 has parent, teacher, and self-​report versions and is for use with students aged 5 to 18. Scores are divided into Behavioral, Emotional, and Cognitive Regulation, and each of these composites includes multiple subscales. The BRIEF-​A has self-​report and informant report versions and is for use in adults aged 18–​90. Scores are divided into Behavioral Regulation and Metacognition, with multiple subscales in each. There is also a preschool version of this scale, the BRIEF-​P. Most of the research on the BRIEF and autism highlights elevations on the Shift subscale. This scale reflects difficulty with cognitive flexibility and transitioning, which is not surprising for this population, although at least one study found the Planning/​Organization and Emotional Control subscales to be most salient in autistic children. The BRIEF2 and BRIEF-​A are not measures of autism or even of social functioning; they measure concerns about EF, which is a

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common challenge for autistics (and, of course, for some groups of non-​autistics). For instance, one study found that 75% of autistic children had clinically significant Global Executive Composite scores on the parent BRIEF2. However, it is important to remember that (a) not all autistic people have poor EF, (b) autistics can struggle with different aspects of EF (EF profiles vary widely), and (c) EF difficulties are not specific to autism. Emotional/​personality measures. There are many measures that assess a client’s current emotional state, such as the Children’s Depression Inventory (CDI), the Multidimensional Anxiety Scale for Children (MASC-​2), the Revised Children’s Manifest Anxiety Scale (RCMAS-​2), and/​or the Screen for Child Anxiety Related Disorders (SCARED). It may also be helpful to administer a personality inventory, such as the Minnesota Multiphasic Personality Inventory (MMPI, which has different versions for adolescents and adults) or the Personality Assessment Inventory (PAI). As previously discussed, clinicians should exercise caution when interpreting self-​report measures. Autists may endorse atypical items without understanding what the question is actually asking, and they may over-​or under-​respond. Additionally, most scales have not been normed specifically on autistic populations. Once again, be sure to go through the responses carefully and ask about noteworthy responses. Also remember that emotions may present atypically; e.g., simply because an autistic person does not endorse symptoms typically associated with anxiety does not mean that they are not vulnerable to anxiety. Other types of measures. As noted above, there are literally countless measures for clinicians to explore, such as sensory profiles, OCD measures, trauma scales, alexithymia scales, career inventories, interoception questionnaires, etc. As our understanding of autism rapidly expands, it is exciting to see new measures! Clinicians are encouraged to be cautious but open to new ways of collecting information about their clients.

Frequently asked questions • What if a client does not want to include anyone else in the evaluation? Of course, you cannot force any client to include others in the evaluation, and ultimately the client makes

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that decision. However, I do recommend having a frank conversation with the client/​parents to clarify what other informants will (and won’t) be privy to, and why input from others is important. For instance, if a teacher completes a scale, that teacher is not told why the client is being seen for therapy or evaluation and is not given any results. This is similar with family members of adult clients. Additionally, it is important to explain to your client/​parents that the more information they allow you to collect, the more you will ultimately be able to help them with their concerns. • Do I need to administer rating scales or self-​report measures in order to diagnose autism? No. These can be helpful but are not necessary.

References and related reading Allen, C. W., Silove, N., Williams, K., & Hutchins, P. (2007). Validity of the social communication questionnaire in assessing risk of autism in preschool children with developmental problems. Journal of Autism and Developmental Disorders, 37(7), 1272–​1278. https://​doi.org/​10.1007/​s10​803-​006-​0279-​7 Autism Spectrum Quotient (AQ) (Adult). (n.d.). Autism Research Centre. www.autis​ mres​earc​hcen​tre.com/​tests/​aut​ism-​spect​rum-​quoti​ent-​aq-​adult Autism Spectrum Quotient (AQ) (Child). (n.d.). Autism Research Centre. www.autis​ mres​earc​hcen​tre.com/​tests/​aut​ism-​spect​rum-​quoti​ent-​aq-​child Auyeung, B., Baron-​Cohen, S., Wheelwright, S., & Allison, C. (2008). The Autism Spectrum Quotient: Children’s Version (AQ-​Child). Journal of Autism and Developmental Disorders, 38(7), 1230–​1240. https://​doi.org/​10.1007/​s10​ 803-​007-​0504-​z Barnard-​Brak, L., Brewer, A., Chesnut, S., Richman, D., & Schaeffer, A. M. (2016). The sensitivity and specificity of the social communication questionnaire for autism spectrum with respect to age. Autism Research: Official Journal of the International Society for Autism Research, 9(8), 838–​845. https://​doi.org/​ 10.1002/​aur.1584 Baron-​Cohen, S., Hoekstra, R. A., Knickmeyer, R., & Wheelwright, S. (2006). The autism-​spectrum quotient (AQ) —​Adolescent version. Journal of Autism and Developmental Disorders, 36(3), 343–​350. https://​doi.org/​10.1007/​s10​ 803-​006-​0073-​6 Baron-​Cohen, S., Wheelwright, S., Skinner, R., Martin, J., & Clubley, E. (2001). The autism-​spectrum quotient (AQ): Evidence from Asperger syndrome/​ high-​functioning autism, males and females, scientists and mathematicians.

Rating scales and self-report measures  135 Journal of Autism and Developmental Disorders, 31(1), 5–​17. https://​doi.org/​ 10.1023/​A:100565​3411​471 Becker, M. M., Wagner, M. B., Bosa, C. A., Schmidt, C., Longo, D., Papaleo, C., & Riesgo, R. S. (2012). Translation and validation of autism diagnostic interview-​revised (ADI-​R) for autism diagnosis in Brazil. Arquivos de Neuro-​ Psiquiatria, 70(3), 185–​190. https://​doi.org/​10.1590/​S0004-​282X20​1200​ 0300​006 Behavior Assessment System for Children | Third Edition. (n.d.). www.pea​rson​asse​ssme​ nts.com/​store/​usasse​ssme​nts/​en/​Store/​Profe​ssio​nal-​Asse​ssme​nts/​Behav​ ior/​Compre ​hens​i ve/​Behav​i or-​ Ass​ e ssm​ e nt-​S ys​ t em-​ for-​C hild​ ren-​ % 7C-​ Third-​Edit​ion-​/​p/​100001​402.html Behavior Rating Inventory of Executive Function 2 | BRIEF2. (n.d.). www.par​inc. com/​produ​cts/​pkey/​24 Behavior Rating Inventory of Executive Function for Adults | PAR. (n.d.). www.par​inc. com/​Produ​cts/​Pkey/​25 Ben Shalom, D., Mostofsky, S. H., Hazlett, R. L., Goldberg, M. C., Landa, R. J., Faran, Y., McLeod, D. R., & Hoehn-​Saric, R. (2006). Normal physiological emotions but differences in expression of conscious feelings in children with high-​functioning autism. Journal of Autism and Developmental Disorders, 36(3), 395–​400. https://​doi.org/​10.1007/​s10​803-​006-​0077-​2 Ben Shalom, D., Mostofsky, S. H., Hazlett, R. L., Goldberg, M. C., McLeod, D. R., & Hoehn-​Saric, R. (2003). Intact Galvanic skin responses and impaired self-​reports in response to emotional pictures in high-​functioning autism. Annals of the New York Academy of Sciences, 985(1), 501–​504. https://​ doi.org/​10.1111/​j.1749-​6632.2003.tb07​111.x Berthoz, S., & Hill, E. L. (2005). The validity of using self-​reports to assess emotion regulation abilities in adults with autism spectrum disorder. European Psychiatry, 20(3), 291–​298. https://​doi.org/​10.1016/​j.eur​psy.2004.06.013 Blakeley-​Smith, A., Reaven, J., Ridge, K., & Hepburn, S. (2012). Parent–​child agreement of anxiety symptoms in youth with autism spectrum disorders. Research in Autism Spectrum Disorders, 6(2), 707–​716. https://​doi.org/​10.1016/​ j.rasd.2011.07.020 Capriola-​Hall, N. N., McFayden, T., Ollendick, T. H., & White, S. W. (2021). Caution when screening for autism among socially anxious youth. Journal of Autism and Developmental Disorders, 51(5), 1540–​1549. https://​doi.org/​ 10.1007/​s10​803-​020-​04642-​w CARS2 Childhood Autism Rating Scale Second Edition. (n.d.). www.proed​inc.com/​ Produ​cts/​13565/​cars2-​childh​ood-​aut​ism-​rat​ing-​scal​esec​ond-​edit​ion.aspx Carter, J. A., Lees, J. A., Murira, G. M., Gona, J., Neville, B. G. R., & Newton, C. R. J. C. (2005). Issues in the development of cross-​cultural assessments

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of speech and language for children. International Journal of Language & Communication Disorders, 40(4), 385–​401. https://​doi.org/​10.1080/​136828​ 2050​0057​301 Cederberg, C. D., Gann, L. C., Foley-​Nicpon, M., & Sussman, Z. (2018). ASD screening measures for high-​ability youth with ASD: Examining the ASSQ and SRS. Gifted Child Quarterly, 62(2), 220–​229. https://​doi.org/​10.1177/​ 00169​8621​7752​098 Chesnut, S. R., Wei, T., Barnard-​Brak, L., & Richman, D. M. (2017). A meta-​ analysis of the social communication questionnaire: Screening for autism spectrum disorder. Autism: The International Journal of Research and Practice, 21(8), 920–​928. https://​doi.org/​10.1177/​13623​6131​6660​065 Chlebowski, C., Green, J. A., Barton, M. L., & Fein, D. (2010). Using the childhood autism rating scale to diagnose autism spectrum disorders. Journal of Autism and Developmental Disorders, 40(7), 787–​799. https://​doi.org/​10.1007/​ s10​803-​009-​0926-​x Corsello, C., Hus, V., Pickles, A., Risi, S., Cook, E. H., Leventhal, B. L., & Lord, C. (2007). Between a ROC and a hard place: Decision making and making decisions about using the SCQ. Journal of Child Psychology and Psychiatry, and Allied Disciplines, 48(9), 932–​940. https://​doi.org/​10.1111/​ j.1469-​7610.2007.01762.x Duvall, S., Armstrong, K., Shahabuddin, A., Grantz, C., Fein, D., & Lord, C. (2021). A road map for identifying autism spectrum disorder: Recognizing and evaluating characteristics that should raise red or “pink” flags to guide accurate differential diagnosis. The Clinical Neuropsychologist, 36(5), 1172–​1207. https://​doi.org/​10.1080/​13854​046.2021.1921​276 Eaves, L. C., Wingert, H., & Ho, H. H. (2006). Screening for autism: Agreement with diagnosis. Autism, 10(3), 229–​242. https://​doi.org/​10.1177/​13623​6130​ 6063​288 Embrace Autism | The ultimate autism resource. (n.d.). https://​embr​ace-​aut​ism.com/​ Harrison, A. J., Long, K. A., Tommet, D. C., & Jones, R. N. (2017). Examining the role of race, ethnicity, and gender on social and behavioral ratings within the Autism Diagnostic Observation Schedule. Journal of Autism and Developmental Disorders, 47(9), 2770–​2782. https://​doi.org/​10.1007/​s10​ 803-​017-​3176-​3 Harrison, P., & Oakland, T. (2015). Adaptive Behavior Assessment System, Third Edition (ABAS-​3). Western Psychological Services. Hollocks, M. J., Casson, R., White, C., Dobson, J., Beazley, P., & Humphrey, A. (2019). Brief report: An evaluation of the Social Communication Questionnaire as a screening tool for autism spectrum disorder in young

Rating scales and self-report measures  137 people referred to child & adolescent mental health services. Journal of Autism and Developmental Disorders, 49(6), 2618–​2623. https://​doi.org/​10.1007/​s10​ 803-​019-​03982-​6 Hull, L., Lai, M.-​C., Baron-​Cohen, S., Allison, C., Smith, P., Petrides, K., & Mandy, W. (2020). Gender differences in self-​reported camouflaging in autistic and non-​autistic adults. Autism, 24(2), 352–​363. https://​doi.org/​ 10.1177/​13623​6131​9864​804 Hull, L., Mandy, W., Lai, M.-​C., Baron-​Cohen, S., Allison, C., Smith, P., & Petrides, K. V. (2019). Development and validation of the Camouflaging Autistic Traits Questionnaire (CAT-​Q). Journal of Autism and Developmental Disorders, 49(3), 819–​833. https://​doi.org/​10.1007/​s10​803-​018-​3792-​6 Jussila, K., Kuusikko-​Gauffin, S., Mattila, M.-​L., Loukusa, S., Pollock-​Wurman, R., Joskitt, L., Ebeling, H., Moilanen, I., Pauls, D., & Hurtig, T. (2015). Cross-​cultural differences in the Parent Rated Social Responsiveness Scale (SRS)? Evaluation of the Finnish version among high-​functioning school aged males with and without autism spectrum disorder. Research in Autism Spectrum Disorders, 9, 38–​44. https://​doi.org/​10.1016/​j.rasd.2014.09.008 Lai, M.-​C., & Baron-​Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013–​1027. https://​doi.org/​10.1016/​S2215-​0366(15)00277-​1 Manohari, S. M., Raman, V., & Ashok, M. V. (2013). Use of Vineland Adaptive Behavior Scales-​II in children with autism —​an Indian experience. Journal of Indian Association for Child and Adolescent Mental Health, 9(1), 5–​12. Matson, J. L., Matheis, M., Burns, C. O., Esposito, G., Venuti, P., Pisula, E., Misiak, A., Kalyva, E., Tsakiris, V., Kamio, Y., Ishitobi, M., & Goldin, R. L. (2017). Examining cross-​ cultural differences in autism spectrum disorder: A multinational comparison from Greece, Italy, Japan, Poland, and the United States. European Psychiatry, 42, 70–​76. https://​doi.org/​10.1016/​ j.eur​psy.2016.10.007 Mazefsky, C. A., Kao, J., & Oswald, D. P. (2011). Preliminary evidence suggesting caution in the use of psychiatric self-​report measures with adolescents with high-​functioning autism spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 164–​174. https://​doi.org/​10.1016/​j.rasd.2010.03.006 Napoli, S. B., Vitale, M. P., Cafiero, P. J., Micheletti, M. B., Bradichansky, P. P., Lejarraga, C., Urinovsky, M. G., Escalante, A., Rodriguez, E., & Schiariti, V. (2021). Developing a culturally sensitive ICF-​ based tool to describe functioning of children with autism spectrum disorder: TEA-​CIFunciona Version 1.0 Pilot Study. International Journal of Environmental Research and Public Health, 18(7), 3720. https://​doi.org/​10.3390/​ije​rph1​8073​720

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Norbury, C. F., & Sparks, A. (2013). Difference or disorder? Cultural issues in understanding neurodevelopmental disorders. Developmental Psychology, 49(1), 45–​58. https://​doi.org/​10.1037/​a0027​446 Ozsivadjian, A., Hibberd, C., & Hollocks, M. (2013). Brief report: The use of self-​report measures in young people with autism spectrum disorder to access symptoms of anxiety, depression and negative thoughts. Journal of Autism and Developmental Disorders, 44(4), 969–​974. https://​doi.org/​10.1007/​ s10​803-​013-​1937-​1 Ratto, A. B., Anthony, B. J., Kenworthy, L., Armour, A. C., Dudley, K., & Anthony, L. G. (2016). Are non-​intellectually disabled Black youth with ASD less impaired on parent report than their White peers? Journal of Autism and Developmental Disorders, 46(3), 773–​781. https://​doi.org/​10.1007/​s10​ 803-​015-​2614-​3 Rea, K. E., Armstrong-​Brine, M., Ramirez, L., & Stancin, T. (2019). Ethnic disparities in autism spectrum disorder screening and referral: Implications for pediatric practice. Journal of Developmental & Behavioral Pediatrics, 40(7), 493–​500. https://​doi.org/​10.1097/​DBP.00000​0000​0000​691 Ritvo, R. A., Ritvo, E., Guthrie, D., Yuwiler, A., Ritvo, M., & Weisbender, L. (2008). A scale to assist the diagnosis of autism and Asperger’s disorder in adults (RAADS): A pilot study. Journal of Autism and Developmental Disorders, 38, 213–​223. https://​doi.org/​10.1007/​s10​803-​007-​0380-​6 Ritvo, R. A., Ritvo, E. R., Guthrie, D., Ritvo, M. J., Hufnagel, D. H., McMahon, W., Tonge, B., Mataix-​Cols, D., Jassi, A., Attwood, T., & Eloff, J. (2011). The Ritvo Autism Asperger Diagnostic Scale-​Revised (RAADS-​R): A scale to assist the diagnosis of autism spectrum disorder in adults: An international validation study. Journal of Autism and Developmental Disorders, 41(8), 1076–​1089. https://​doi.org/​10.1007/​s10​803-​010-​1133-​5 Rutter, M., Le Couteur, A., & Lord C. (2013). ADI-​R: Autism Diagnostic Interview Revised: Manual. Western Psychological Services. Sandercock, R. K., Lamarche, E. M., Klinger, M. R., & Klinger, L. G. (2020). Assessing the convergence of self-​report and informant measures for adults with autism spectrum disorder. Autism, 24(8), 2256–​2268. https://​doi.org/​ 10.1177/​13623​6132​0942​981 (SCQ) Social Communication Questionnaire. (n.d.). www.wps​publ​ish.com/​scq-​soc​ial-​ commun​icat​ion-​questi​onna​ire Shulman, C., Rice, C. E., Morrier, M. J., & Esler, A. (2020). The role of diagnostic instruments in dual and differential diagnosis in autism spectrum disorder across the lifespan. Child and Adolescent Psychiatric Clinics of North America, 29(2), 275–​299. https://​doi.org/​10.1016/​j.chc.2020.01.002

Rating scales and self-report measures  139 Soto, S., Linas, K., Jacobstein, D., Biel, M., Migdal, T., & Anthony, B. J. (2015). A review of cultural adaptations of screening tools for autism spectrum disorders. Autism, 19(6), 646–​661. https://​doi.org/​10.1177/​13623​6131​ 4541​012 (SRSTM-​2) Social Responsiveness Scale, Second Edition. (n.d.). www.wps​publ​ish.com/​ srs-​2-​soc​ial-​res​pons​iven​ess-​scale-​sec​ond-​edit​ion Stoll, M. M., Bergamo, N., & Rossetti, K. G. (2021). Analyzing modes of assessment for children with autism spectrum disorder (ASD) using a culturally sensitive lens. Advances in Neurodevelopmental Disorders, 5(3), 233–​244. https://​ doi.org/​10.1007/​s41​252-​021-​00210-​0 Sun, X., Allison, C., Auyeung, B., Zhang, Z., Matthews, F. E., Baron-​Cohen, S., & Brayne, C. (2015). Validation of existing diagnosis of autism in mainland China using standardised diagnostic instruments. Autism, 19(8), 1010–​ 1017. https://​doi.org/​10.1177/​13623​6131​4556​785 Tierney, S., Burns, J., & Kilbey, E. (2016). Looking behind the mask: Social coping strategies of girls on the autistic spectrum. Research in Autism Spectrum Disorders, 23, 73–​83. https://​doi.org/​10.1016/​j.rasd.2015.11.013 Veytsman, E., Ferrendelli, C., Yang, J. W., Bolton, C. C., & Laugeson, E. A. (2016, May). Using multiple informants to assess social functioning and treatment outcome for adolescents with ASD following the UCLA PEERS® program [Poster presentation]. International Society for Autism Research Conference 2016, Baltimore, MD, USA. https://​imfar.con​fex.com/​imfar/​2016/​web​prog​ ram/​Pap​er21​189.html Vineland Adaptive Behavior Scales | Third Edition. (n.d.). www.pea​rson​asse​ssme​ nts.com/​store/​usasse​ssme​nts/​en/​Store/​Profe​ssio​nal-​Asse​ssme​nts/​Behav​ ior/​Adapt​ive/​Vinel​and-​Adapt​ive-​Behav​ior-​Sca​les-​%7C-​Third-​Edit​ion/​p/​ 100001​622.html Wallis, K., & Pinto-​Martin, J. (2008). The challenge of screening for autism spectrum disorder in a culturally diverse society. Acta Paediatrica (Oslo, Norway: 1992), 97, 539–​540. https://​doi.org/​10.1111/​j.1651-​2227.2008.00720.x White, S. W., Schry, A. R., & Maddox, B. B. (2012). Brief report: The assessment of anxiety in high-​functioning adolescents with autism spectrum disorder. Journal of Autism and Developmental Disorders, 42(6), 1138–​1145. https://​ doi.org/​10.1007/​s10​803-​011-​1353-​3 Wiggins, L. D., Bakeman, R., Adamson, L. B., & Robins, D. L. (2007). The utility of the Social Communication Questionnaire in screening for autism in children referred for early intervention. Focus on Autism and Other Developmental Disabilities, 22(1), 33–​38. https://​doi.org/​10.1177/​10883​5760​ 7022​0010​401

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Woodbury-​Smith, M. R., Robinson, J., Wheelwright, S., & Baron-​Cohen, S. (2005). Screening adults for Asperger syndrome using the AQ: A preliminary study of its diagnostic validity in clinical practice. Journal of Autism and Developmental Disorders, 35(3), 331–​335. https://​doi.org/​10.1007/​s10​ 803-​005-​3300-​7 Zhang, J., Wheeler, J. J., & Richey, D. (2006). Cultural validity in assessment instruments for children with autism from a Chinese cultural perspective. International Journal of Special Education, 21(1), 109–​114. https://​soar.suny. edu/​han​dle/​20.500.12648/​2223

Chapter 7

Behavioral observations

Author’s note: The behavioral observations discussed in this chapter are from the point of view of non-​autistic clinicians. The behaviors noted are not wrong or suggestive of impairment. Rather, we seek to notice these behavioral differences purely in an attempt to understand and better support our neurodivergent clients. The clinicians who provided input for this chapter are all deeply committed to creating a safe, neurodiversity-​ affirmative space for their clients and to being allies in the therapeutic relationship. Why are careful behavioral observations so important? While there needs to be a paradigm shift to focus less on external behavior and more on the client’s internal experience, it is still relevant and important to observe the client’s behavior for clues that they may be autistic. It bears repeating that we use data to diagnose and understand our clients, but data has many sources; test scores are just one. You can get rich data from careful observations of your clients’ communication, interaction, and behavior patterns. This chapter sets forth some general principles, followed by clues to watch for during testing or therapy sessions.

General principles for behavioral observations The presence of any of these behaviors does not necessarily mean that your client is autistic. There can be multiple reasons for any single behavior. You are looking for a pattern, that is, for multiple observations that are possibly consistent with autism and that do not have a more likely explanation. The absence of any –​or even all –​of these behaviors does not necessarily mean that your client is not autistic. These are DOI: 10.4324/9781003403838-8

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traits and behaviors that you will notice in some of your autistic clients but certainly not all of them. Take notes on your observations. This is important for both evaluators and therapists. Many therapists take notes about the content of sessions but not necessarily about their observations of the client’s communication style, presentation, and behavior. Just as you may advise clients or parents to keep a basic log of behaviors, writing down your own observations will help you notice patterns over time. Observe with active curiosity and without judgment. There are many times when we observe a client’s behavior or presentation but do not comment on it in the moment. We may notice poor hygiene, unusual inflection in their voice, lack of attention to typical social niceties, or countless other behaviors. Commenting on these kinds of observations could risk insulting, hurting, or otherwise alienating the client. At other times, however, it can be helpful to share your observations with the client in the moment. The point of doing this is to: (a) try to understand the internal experience that goes along with the behavior, and (b) assess and enhance the client’s insight into how they present to others. For instance, if a client continually interrupts, you may comment on it, possibly in a humorous way (e.g., smiling and saying, “I see that I speak too slowly for you!”). This can help you gauge the client’s receptiveness to, and understanding of, this type of humor, and comments like this can also open up a discussion about the interrupting. If the client responds, “I’m sorry! I know I interrupt all the time! I do it because I always forget what I’m going to say,” then you know this likely has more to do with working memory or impulse control than with social intuition. If, on the other hand, the client indicates a lack of awareness that they frequently interrupt, or a general awareness that they interrupt but frustration about how to be aware of it in the moment, it may be more indicative of limited social awareness, and it is something to query about during your family, teacher, or other collateral interviews. Of course, any comments on your part need to be nonjudgmental. Your intent is not to convey that the client did not meet your (arbitrary) social expectations, but rather that you are curious and trying to understand them and how they move through the world. Try to elicit social behaviors. When greeting your client in the waiting room, look to see whether they respond with eye contact and/​or

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a verbal greeting. With children, observe how they separate from their parent or other caregiver. During evaluations, notice how your client responds to informal social demands. For example, as you walk down the hall to the testing office, initiate small talk, and notice whether or not the client replies in a typical way. Throughout the course of your work with the client, look for opportunities to make social bids, and then observe the client’s response. Drop a social breadcrumb (e.g., “You’ll never believe what I’m doing this weekend….,” or “My cat did the funniest thing this morning”) and see if your client follows up with a relevant question (this would likely not be appropriate in the context of therapy, though it may come up organically). When your client is telling an anecdote, you might interject with a relevant comment about your own experience (“It sounds like you had a great trip. I went to Florida recently too”) and see whether your client is able to shift their mental train of thought, and whether they have (or feign) interpersonal interest. You might offer a humorous sarcastic comment to a quiet teen (“Here’s what we’ll be doing next; try to restrain your enthusiasm…”) and see how they react. This is all data. Look for strengths as well as weaknesses. You are looking not only for areas of concern but also for areas of strength in your behavioral observations. This can include things like steady focus, strong stamina, a willingness to maintain effort on challenging items, strong insight into one’s strengths and challenges, etc. You will also want to note when the client easily engages in small talk, follows up on your social bids with relevant questions, responds to your use of sarcasm or humor, and uses social niceties (e.g., please, thank you, bless you, etc). Find out what happens after your session is over. It can be helpful to understand –​from the client or a family member –​if anything of note occurred before or after your session. For instance, did the client spend excessive time and energy preparing for the session? Did they fall apart, withdraw, or need a nap after they saw you? If so, that could be an indication that they were camouflaging while they were with you. Frankie is a 52-​year-​old with a master’s degree who was referred by their therapist to determine if autism was underlying their lifelong anxiety, depression, and eating disorder. Frankie sheepishly admitted that, the day

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before their first appointment, they did a “practice run,” which included getting dressed in the clothes they had carefully chosen for the appointment, leaving at the same time they would need to leave the next day, driving the route they had carefully planned, parking in the parking garage they had identified, and walking the one block from the parking garage to the office. Frankie explained that they always needed to do this before going someplace new for the first time.

Behavioral observations in a testing environment An autistic client may have an unusual way of negotiating the unfamiliar environment. Besides noting the client’s eye contact and response to your initial greeting, you may find it helpful to observe how the client moves through the unfamiliar environment of your office. For instance, do they charge ahead of you down the corridor from the waiting room, even though they don’t know which office is yours? If so, once they realize that they do not know where they are going, do they look to you for a clue, stop and wait for direction (with or without eye contact), or simply keep wandering the halls? Once in the testing office, notice where they sit. I notice that some clients don’t sit in their chair at the testing table, and instead sit in the evaluator’s chair (which is usually obvious to my non-​autistic clients, because my testing supplies and laptop are in front of it), while others may sit on the couch or the chair that is off in the corner of the room. When the latter occurs, I take my seat at the testing table and see if the client notices the implicit expectation that they, too, should sit at the table, or whether they need an explicit request (e.g., “Will you please join me at the table?”). Autistic clients may have a literal or blunt communication style. For instance, in the above example (“Will you please join me at the table?”), I have made the mistake of asking, “Would you like to join me at the table?”, to which some clients simply respond, “No, thank you.” It’s important to avoid the mistake of interpreting a literal communication style as being inattentive, defensive, or smart-​alecky. In this example, the client may misinterpret the polite request as an offer, as if being offered a choice of tea or coffee, and respond with a simple and polite, “No, thank you.” This is data. These clients may also be quite blunt and prone to sharing the unvarnished truth as they see it, without

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a social filter. For example, you may notice a client correcting the way you pronounce a word or tell a joke. Again, it’s important to avoid interpreting such bluntness as disrespectful, oppositional, or nit-​picky. Examples of literal communication in testing sessions: • When asked to reverse a sequence of digits (i.e., 3-​2-​1 should be reversed to 1-​2-​3), the client pronounces each number backwards (e.g., “owt” for “two”), rather than reversing the order of the numbers. • “Why have you come to see me today?” “Because we had an appointment.” • “Where do you go to school?” Client recites the school address rather than stating the name of her school. • When asked to tell a short story about a pictured scene with a beginning, a middle, and an end, every story that the client offers proceeds as follows: “The beginning was… The middle was… The end was….” • The client stands up to leave at precisely the moment that the appointment ends, even if they are mid-​task. You may notice that you need to make the implicit explicit. Autistic clients frequently require explicit wording for questions or instructions that non-​autistic clients can easily intuit. Examples of the need to make the implicit explicit in testing sessions: • Caroline was told, “Now we’re going to do a spelling test. I will read each word and give it to you in a sentence. You can write the words here [on the protocol sheet in front of her]. Ready to start?” She replied, “So I have to spell them correctly?” • During a conceptual reasoning task, Holden was told, “I’m going to give you two words or things, and I’d like you to tell

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me how they are alike. For example, A and B, how are they alike?” Holden stated, “They’re both letters!” The examiner responded, “Excellent! How about a square and a circle?” Holden asked, “What about them?” • Nate was told that he would hear a short string of numbers and had to repeat them in order. Although most students intuitively understand that they need to pay close attention and remember the numbers, Nate asked, “Can I have paper to write them down?” Listen for repetitive or unusual language. Keep an ear out for idiosyncratic or repetitive language. This may include scripted language from a favorite cartoon or movie, echoing of your own language or tone, or repeated phrases that are unexpected (e.g., an adolescent client recently commented, “Oh, that’s lovely,” or “That’s incredibly terrifying,” multiple times during a testing session). Eye contact may seem unusual. You may notice that your client is not using eye contact to initiate or respond to joint attention. Their eye contact may be unusually brief (quickly flicking away from you) or prolonged (with a staring quality that feels uncomfortable). Or they may not actually look at your eyes, instead focusing on another part of your face or on something else in the room. Or they may meet your gaze but not actually use eye contact to manage interactions. There may be flat or restricted affect. Sometimes healthcare professionals diagnose depression based primarily on a client’s flat or restricted affect. However, when you notice that a client’s affect remains the same throughout the testing session, with no changes in response to a funny anecdote, effusive praise, or a difficult task, then it is important to consider the possibility of autism. Additionally, restricted affect that is persistently positive may not be noticed by parents, clinicians, or teachers, so make note of occasions when a client remains upbeat and cheerful even when discussing unhappy or stressful subjects. Josie’s affect was persistently bright, and while her volume sometimes changed, her affect did not, even when she experienced frustration during tasks that were more challenging for her. She even continued to display

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bright affect when discussing topics that were presumably painful, e.g., while making comments such as, “I’m a bother to my family and friends, I’m a waste of time and space.”

You may notice a difference in your client’s comfort or communication style on different types of tasks. Many autistic clients seem confident, or at least comfortable, when engaged in structured cognitive or academic tasks. They may have fluent speech, typical working tempo, and unremarkable affect while completing these kinds of activities. However, their communication style or affect may change when they transition to tasks that focus on their social or emotional functioning, or on tasks that are ambiguous in nature. During these sorts of activities, they may speak less fluently, with longer pauses or more filler words. They may be less organized or coherent in their thought process, or less able to put their thoughts and feelings into words. As Susanne Duvall and her colleagues note, “…some children with [autism] exhibit improved eye contact and less discrepant social skills during structured cognitive testing and more impairments during casual conversation or other non-​goal directed activities. They may also engage more successfully with tests that are clearly structured and struggle more with open ended, imprecise questions and directions, particularly if they include non-​literal, abstract or metaphorical language.” During a vocabulary test, Dr. Frank’s body language was unremarkable, and her language was fluent, with very few filler words (e.g., “um,” “like”). She spoke efficiently and succinctly and stayed on point, resulting in no need for querying. In contrast, when discussing social and emotional concerns during the clinical interview, Dr. Frank frequently used filler words, paused for long periods of time, stopped and restarted sentences, and tended to trail off or lose her train of thought. In addition, she gestured emphatically and in a manner that was not coordinated with her words. She seemed to have a great deal of difficulty answering interview questions, despite her strong level of motivation to understand herself and to fully participate in the evaluation. At one point during the interview (which was intentionally very slow-​paced, with a gentle and flexible atmosphere), Dr. Frank even became lightheaded.

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Autistic clients may not indicate when they have completed a test. I have noticed this over and over again with my autistic clients (and rarely with my non-​autistic clients). While clients are independently completing tests or filling out self-​report measures, the tester may be scoring, writing notes, or preparing the next test, and may not always notice when the client is done working. Most non-​autistic clients will communicate, verbally and/​or nonverbally, when they are finished and ready to move on. They may put their pencil down in an obvious way, seek eye contact, clear their throat, or say, “Done.” Some autistic clients do not do any of these things; instead, they simply stop working and sit quietly, even during timed tests. When this happens on an untimed test, I sometimes pretend not to notice, to see what they will do. Sometimes it takes a few minutes for them to seek my attention; other times, I give up on the experiment and move on with the next interaction. This is an interesting example of a client’s potential difficulty understanding another person’s perspective in order to effectively manage interactions. On a multiple-​choice test, Noah persistently pointed to his answers, rather than saying them out loud, despite obvious verbal hints that it would be easier for the evaluator if he verbalized his responses. And on two occasions when the evaluator pretended not to notice Noah pointing to his response, he remained silent, simply resting his finger on the page and making no attempt to verbally alert the evaluator or even to catch her eye.

Autistic clients may have unusual sensory responses. Unusual sensory responses can include over-​responsivity, such as being so distracted by a ticking clock that the clock needs to be removed from the room, or being bothered by the hum of the fluorescent lights. There may also be signs of sensory craving, such as a persistent need to engage with a particular fidget toy, to the extent that it interferes with testing or with the client’s engagement with you. In addition, there may be unusual responses to sensory toys, such as repetitive behavior or unusual ways of holding their body, due to the excitement of the sensory experience that the toy elicits. Some clients also demonstrate their sensory experience through their use of clothing, e.g., removing their shoes, keeping a hood on at all times, or always wearing unusually tight or loose clothing.

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In the next chapter, I discuss social cognition assessment instruments, including the MIGDAS-​2, which has a very useful sensory-​based client interview with associated detailed behavioral observations checklists. Some autistic clients are inattentive to their effect on their environment (or the people in it). Some clients leave a mess in the waiting room or the testing room, with trash, food-​or drink-​related messes, and personal belongings strewn across furniture and the floor. Of course, this also happens with clients who have significant ADHD, due to disorganization. Another example of this lack of awareness is when a client persistently kicks the tester under the table or otherwise enters the tester’s personal space. Autistic clients may not realize that they are kicking you or making a mess, and therefore they don’t apologize. However, when it is gently pointed out, they invariably do feel badly and say so. They may decline all offers of breaks. Some clients, particularly teens and young adults, are able to work for several hours with no breaks for water, snacks, or the bathroom. However, if a client declines all offers of breaks, particularly if they are a younger child or an adult, it is possible that they have low interoceptive awareness. This may be particularly applicable if you observe evidence of fatigue, hunger, or thirst, and the client does not make any attempts to manage these issues. Of course, it is also possible that the client is aware of their needs but is hesitant to speak up, which is also relevant, but more from a social interaction perspective. In this case, consider asking the client what stopped them from requesting or accepting a break (and always make it clear at the beginning of a session that breaks are acceptable and expected). The reasons could include social anxiety, rigid thinking, low interoceptive awareness, or other factors. There may be context blindness. Context blindness was discussed in my previous book with Sarah Wayland and Jamell White. To be clear, autistic individuals are not blind to context, but they may have difficulty intuitively using context to understand and respond to the world. While any individual can occasionally miss or fail to use context, some autistic clients do this repeatedly. Thus, a pattern of context blindness is a significant clue that your client may be autistic. Look for any unusual misinterpretations of questions, test items, or the environment, and then consider if that misinterpretation could be indicative of a tendency to “miss the bigger picture” or focus on the trees instead of the

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forest (more likely, focusing on a vein on a leaf on a particular tree in the forest). This can be observed in countless ways during testing sessions; here are just a few examples: Examples of context blindness in testing sessions: • Olivia, age 14, closely studied the identical blocks on a block construction task to determine which red side of each block was closer to the shade of red in the stimulus book. • Calvin, 16, completed a self-​report measure about his mood, on which he had to choose which sentences applied to him (e.g., I enjoy school, or I don’t enjoy school). After completing the measure, Calvin noticed that the instructions specified that he should mark an X for his answers, and he became extremely concerned because he had made a checkmark instead. • Rose, 19, was asked to quickly read short sentences and simply state if they were true or false. The practice item was, “fish can read books.” Rose asked, “what if fish can read, and we just don’t know about it?” • Morgan, 15, was asked to explain how a mountain and a lake are alike. They first stated that they needed to know how high the mountain was. • Penelope, age 16, wrote: “My best friend one the state-​held horse race.” • Jack, 11, used entirely random capitalization in his otherwise intact writing. For example: “This boy is Happy. This Nail is very pointy. The Toes on my foot are Little.” • Maya, 8, solved the following math problem: 1. 2+​3 =​ _​_​_​_​ as 1.2 +​ 3 =​ _​_​_​_​ She did this for each problem (e.g., 2., 3., 4…). • Nico, 12, completed two self-​report measures but noticed that one of them asked for the date as M/​D/​Y, while the other

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asked for it as Y/​M/​D. This confused and bothered him, and he wondered out loud why they were different in this way. • Zoey, age 10, was completing a visuospatial task that required her to look at a pictured puzzle with a missing piece, then study five options and determine which would best fit into the puzzle. The options were numbered underneath, one through five. Zoey asked, “Do the numbers below mean anything?” and indicated that she thought the numbers themselves were part of the puzzle.

I see excellent examples of context blindness whenever I dictate. Dictation software does not easily use context to choose between homonyms (two words or phrases that sound the same but have different meanings). Here are some real-​life examples of context-​ insensitive dictation results that may help you understand some of the unusual but phonetically correct spelling errors that can result from context blindness: • Jamie gave up easily on tasks. For instants… • Margaret frequently paste the room. • Write a Maine or topic sentence for this paragraph. • Charlotte did not make consistent or meaningful iContact. • There were know other factors involved. • Elise’s mother noted that her moods “swing up and down from day today, even our to our.” Behavioral observation notes with autistic clients are often either unusually short or unusually long. Some autistic clients do not initiate or maintain any small talk. They may barely move or change affect throughout testing. They don’t ask questions, interact with sensory toys, take breaks, or do much of note at all. With these clients, there is very little to write, and even after spending hours together, you may have only jotted down a few basic observations. In contrast, other autistic clients demonstrate many unusual behaviors or have an idiosyncratic interaction style. They may demonstrate quirky comments, subtle but notable movements or body posture, gestures or

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affect of note, interesting responses to sensory toys, examples of context blindness, sensory responses to the environment, or other behaviors of interest. With these clients, you may take many pages of notes.

Behavioral observations in a psychotherapy environment I am not a therapist, and for this section I am indebted to the following psychotherapists for sharing their wisdom: Lara Doyle, LCSW; Rebecca Goldberg, MSW, LCSW; Haniya Silberman, LCSW-​C; Caron Starobin, LCSW-​C; and Sondra Wolff, LCSW. The initial phone call may feel either distanced or overwhelming. The initial phone call, where you chat briefly or discuss scheduling, may feel a bit flat. The client may not come across as friendly, charming, warm, or engaging. They may provide minimal information and may be challenging to fully engage. Alternatively, the client may include far too many details and speak at great length, seemingly oblivious to the idea that this is intended to be a fairly brief screening phone call. They may be unaware of waiting room or video session etiquette. As Rebecca noted, “I’ve had to teach the skill of waiting; for instance, not to arrive 45 minutes early for every appointment. I’ve had to explain that the waiting room is typically for use 10–​15 minutes before the appointment starts.” In addition, it has been necessary to ask some clients not to listen to audio books or podcasts without headphones while in the waiting room. There may be similar issues with video session etiquette. The client may arrive late and not be ready, moving their computer around or even getting dressed after the session has begun. While non-​autistic clients are sometimes late to sessions and can be disorganized, if this is a regular pattern, particularly without awareness or apologies, then it is worth noting. They may also offer the therapist an unusual camera angle, with their own face only partially (or not at all) in the frame. A key part of this observation is to determine whether the client is aware of how they are coming across and how the experience may feel for the therapist. For instance, if a client explicitly states, “I don’t like being on camera. Do you mind if I keep my camera off?”, that is more suggestive of social anxiety (with or without autism). However, if they are simply unaware that they are only partially pictured or entirely off camera, that may be a sign

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of difficulty putting themselves in someone else’s head and/​or understanding social niceties. As Sondra noted, “there might not be an ability to perceive how it feels on the other side of the camera. I’ve had clients get coffee and be gone for five minutes [in the middle of a session].” They may have difficulty with flexibility. Each of the therapists interviewed had a story about a client who struggled if the therapist was even one minute late for an appointment. The reaction may range from a mild comment disguised as a joke to overt distress or annoyance. Lara recalled one client who wanted to make sure that they would get an additional minute at the end of the session if they began a minute late. These clients may also come into the office from the waiting room at the specified time, without waiting to be invited. In addition, they may need to keep the same appointment days or times. As Haniya commented, “Sometimes these clients have noticeable rigidity with appointment times and schedules.” For instance, they may “need to keep their appointment time no matter what, otherwise their anxiety skyrockets.” Clients may also have difficulty shifting their perspective. They may get stuck on a perception and have particular difficulty changing to a new way of looking at a situation. For example, they may maintain that relationships are supposed to look a certain way and that people are supposed to behave in a certain way, and if the relationship or person does not adhere to those expectations, then they are bad. Many therapists recognize this as black-​and-​white thinking. There may be differences in the client’s and/​or therapist’s communication style. In regard to the therapist’s style, Haniya noted, “with these clients, I need to change the questions I normally ask as a therapist. The typical reflection or leading interpretation, the use of open-​ended, vague questions –​that may not work at all.” Caron agreed, stating, “I have to communicate in an explicit way and provide more context.” Lara has observed that “the cadence of the session is different. I have to really slow down my pace and my speech. I have to be totally OK with long pauses while they figure out how to get across what they want to say.” Sondra noted that, as therapists, “we are trained to be affect-​oriented and to ask about emotions, but that strategy can send some autistic clients into a tailspin.” And of course, each client has their own style. Some autistic clients will talk at exceptionally great length, often including a tremendous number of details (a sign of their low awareness of how much or little context their listener requires), and not letting the therapist be part of

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the interaction. Others may be unusually quiet in therapy, constantly needing to be drawn out and given structure in order to engage. Other communication differences may include an unusually quirky sense of humor, not engaging in basic social niceties at the beginning or end of each session, or being unusually blunt, to the extent that it can feel (inadvertently) disrespectful at times. The client may comment on the sensory experience. Rebecca observed that autistic clients have commented on her voice: “ ‘Oh, you’re not too loud,’ clients say, or ‘I like your voice.’ They can’t articulate it, but they comment on the prosody, the cadence, the tone, the volume.” Clients may also notice and/​or be bothered by the white noise machine, the lighting, or other typically unremarkable sensory aspects of the environment. Certain themes may arise. The therapists interviewed all agreed that certain issues and themes frequently come up in their work with autistic clients. For example, their clients are often “ghosted” or otherwise lose relationships and don’t know why. Related to this, their understanding of relationships is often a subject of discussion, including boundaries, communication, and rules. As Haniya noted, “it is the exact same story for a 30-​year-​old and a 70-​year-​old. The bottom line is around intensity, rule navigation, and boundary violations. These aren’t really boundary violations, but someone may have violated a ‘rule,’ and there is no flexibility, like if a peer feels slightly different, then we can’t be friends…[these clients need] help with social rules, communication, navigating boundaries, and rules in dating. For example, what does ‘what’s up’ mean? Trying to figure out the rules. I don’t hear that as much from non-​autistic clients.” Rebecca added, “I find so many of these clients to be likable and enjoyable, but their relationships are constantly falling apart. So I wonder, ‘why aren’t you able to have close, lasting relationships?’ They have no best friend, or they’re too intense, or they’re isolated, or friends keep dropping them, etc.” Lara chimed in, “a lot of the girls do great one-​on-​one with adults but not nearly as well with their peers.” Other themes may relate to lacking a sense of self or a sense of balance. As Sondra observed, there is often “difficulty finding equilibrium, difficulty regulating their bodies and other areas of life, the way they interact with other people. [For instance], they may put all their eggs in one basket. There may be extremes in relationships, either overdependence

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or disconnection.” Lara added that some of these clients “are way too intense, or they step back from relationships too quickly. That’s why a lot of those relationships dissolve.” Emotional regulation is another related theme. Lara noted that some of her autistic clients “have huge meltdowns or outbursts, and their language can be aggressive with their parents. It pushes the parents’ buttons, because they think it’s disrespect, but the behaviors are not intentionally oppositional.” Caron added, “The emotional dysregulation is often anticipation that they will be misunderstood because they have been in the past, leading to an almost trauma-​like experience with being misunderstood. They begin to anticipate that it’s happening again and can become dysregulated.” Issues related to motivation also arise. Haniya noted that, “Most of the autistic people I work with are in my office because someone else, like a parent or spouse, has asked them to come.” There may be less of a connection to the big picture in therapy. Sondra brought up this observation, noting, “A lot of my autistic clients come in without a plan of what they want to talk about. There’s not a connection between the last session and the current one.” There was particularly strong agreement about this point. Rebecca added that many of these clients do not spontaneously connect details to the bigger picture, e.g., “What did it mean that your dad said that to you?” She noted, “I need to specifically ask what’s underneath it or what it means to them.” Caron added that this difficulty connecting to the bigger picture affects the client’s ability to engage in “emotional planning,” stating that “Non-​autistic people can more easily anticipate very quickly and intuitively, like how they may feel in a conversation with a friend,” while many of her autistic clients anticipate scenarios “in a mathematical way, like an algorithm,” e.g., “if I say this, they’ll say that.” Caron has found that she needs to explicitly guide her autistic clients to consider the emotions in each scenario. Haniya added, “Non-​autistics more often come in with something specific to talk about, related to their goals for therapy and/​or their emotional experience, with examples. My autistic clients may be quite pleasant and willing to engage but completely not involved with [directing the session]; they rely more on me to do that.” There may be unusually long and detailed emails. Autistic clients sometimes send unusually lengthy emails (or portal messages).

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These emails may be incredibly detailed and contain many follow-​up questions, with a thoroughness that can feel overwhelming. Along these lines, Lara added that the parents of autistic clients can send “incredibly long emails, almost a book, and so detailed.” (This also happens in the context of testing. I once evaluated a 39-​year-​old physical therapist who, in addition to completing a standard history questionnaire, emailed nine single-​spaced pages of tremendously detailed information, which were subsequently followed by several similar emails containing more information and clarification.) This is rare for non-​autistic individuals but not uncommon in autistics, and it may result in the need to more explicitly discuss frameworks for communication. There may be an emotional disconnect. Issues related to affect, interoception, and alexithymia may be evident in therapy sessions. Sondra noted that some clients seem to “walk through their world without [showing] an emotional reaction to it.” She described the following situation: “I was picking up the wrong signals from flat affect before I understood that the client was autistic. They seemed unhappy to be there, as though they didn’t like me, but they kept coming back. And they didn’t realize why they weren’t well perceived in their world.” She went on to say that, “Often [autistic clients] are unable to identify their emotions. Even adults. Just knowing how they feel for the first time is really helpful.” This may be related in part to a genuine lack of awareness of their inner landscape and/​or in part to having inadequate vocabulary to describe it. Haniya described another example: “I worked with a mother and an 18-​year-​old daughter. The mother kept asking how the daughter felt, what was getting in her way. Then she read about interoception and said [it was life changing].” Along these lines, Haniya noted that when working with psychiatrists she has often had to advise them, “Don’t ask ‘what have you noticed with your medicine this week?’ or ‘how are you feeling?’ ” Lara added, “They may not know they are thirsty, hungry, or full, so they eat too much, or they don’t stop eating, or they get dehydrated.” There may be slow progress in therapy. Autistic clients may be less responsive to typical approaches and interventions. However, as Rebecca wisely observed, “If we shift our lens and work with them differently, progress can be made.” That is, it is incumbent upon the therapist to adjust their approach to meet the needs of these clients.

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Connecting culture As you make (and make sense of) your behavioral observations, it is essential to consider the client’s cultural background, as well as the interplay between their cultural background and yours. For example, Dr. V. shared how she once evaluated a boy who was part of the Orthodox Jewish community. During the evaluation, he was very guarded, made minimal eye contact, and it was difficult to connect with him. Dr. V. was not expecting to see such disengagement and asked herself, “Did I miss something?” She called for consultation with a colleague well-​versed with the Orthodox community. The colleague asked: “What were you wearing that day? Long sleeves or short sleeves?” Dr. V. had been wearing short sleeves, which may have distracted or upset the boy and could explain his disengagement. She also learned that in the Orthodox Jewish community, eye contact with an unfamiliar adult of the opposite sex is considered disrespectful. Dr. V. realized that without this understanding she could have attributed these behaviors to possible autism.

Frequently asked questions • Wouldn’t I expect to see some of these things with non-​ autistic clients as well? Absolutely. Any of these on its own is not specific to autism and may not have any significant meaning. However, if you notice a number of these behaviors or traits in a client, or if you notice these persistently, autism may be part of the clinical picture. Look for behaviors that are pervasive and/​or persistent. • What about school observations? While direct school observations can sometimes be helpful, I have generally found that, for this population, they are not helpful enough to justify the significant cost. Rather, I find the time better spent, yielding richer information more efficiently, if I use it to interview more adults in the child’s life, such as a prior teacher, playground aide, school counselor, coach or other activity leader, or a friend’s parent. These individuals have seen the child for many more hours than I could directly observe, and they’ve seen the child in different settings. If you do opt to do a school observation, however, and your goal is to understand their

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social/​emotional functioning, make sure to observe the child in an unstructured setting (e.g., during recess instead of during math class).

Reference Matson, J. L., Matheis, M., Burns, C. O., Esposito, G., Venuti, P., Pisula, E., Misiak, A., Kalyva, E., Tsakiris, V., Kamio, Y., Ishitobi, M., & Goldin, R. L. (2017). Examining cross-​ cultural differences in autism spectrum disorder: A multinational comparison from Greece, Italy, Japan, Poland, and the United States. European Psychiatry, 42, 70–​76. https://​doi.org/​10.1016/​ j.eur​psy.2016.10.007

Chapter 8

Social cognition testing

“A one-​ size-​ fits-​ all solution to autism diagnosis is, well, stupid. A universally one-​size-​fits-​all poncho can’t be made, and that’s just a square of fabric with a hole in it. Seriously?” –​Sara M.

A review of all or even most social cognition tests is not feasible. Instead, this chapter offers general guidelines about choosing and using these measures and will highlight a few that I currently find useful.

General principles for social cognition testing Tests are simply an organized way of gathering information. Tests can be helpful because they are given the same way each time, and they use normative data that provides an objective frame of reference against which to consider an individual’s performance. By now, I hope you understand that social cognition tests are only one source of information about an individual, and there is nothing magical about them. They are simply another way of collecting information. Scores are not the only type of data. Conclusions and recommendations should be based on data, but not all data derive from test scores. As noted in the chapter on Behavioral Observations, you can gain great insights by observing a client’s behavior during social cognition tests. Do they approach these tasks differently than other types of tasks? Are they more stressed out or frustrated? Is their working tempo slower? Do they need more prompts, queries, or reminders? Do they seem tired afterwards? All of this is relevant data, particularly if the client presents differently during social cognition tests than other types of tasks. DOI: 10.4324/9781003403838-9

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Test scores should never be used in isolation. This applies to standardized tests as well as standardized observational measures, as these merely provide a time-​limited snapshot of an individual’s ability to “perform” in a quiet, one-​on-​one environment with a professional. In this environment, individuals rarely need to use context, are not required to interact with peers or with more than one person at a time, etc. The information that you obtain from any test (i.e., scores, client comments, or observations) must be integrated with the history, collateral interviews, and other data. You are looking for convergent data that combine to help you fully understand the client. By now this seems obvious, but so many clinicians, schools, and insurance companies rule out autism, payment, or services on the basis of a single test score that it is worth re-​emphasizing this point. A cutoff score does not tell you if criteria are met. While our current classification systems are certainly flawed, they are the best structure that we have at this time. The DSM criteria for autism (and for all other diagnoses, as far as I can tell) say nothing about a cutoff score on any particular test. As repeatedly noted by test authors and other researchers, no single test score is sufficient to make such an important and complex clinical decision. For instance, as Catherine Lord and her colleagues noted when they published their research validating the ADOS-​2, “in cases where ADOS-​2 classification differs from the overall clinical diagnoses, clinical judgment should overrule the ADOS-​2 classification in achieving a best-​estimate clinical diagnosis.” Many current social cognition tests may be insensitive to some presentations of autism. There are many reasons for this. Some tests had normative groups that did not include autistics with less obvious presentations. Some do not have separate norms for individuals across the gender spectrum. Some tests are based in part on outdated assumptions or include outdated language. Many, if not most, of these tests are not timed. Some autistic clients –​particularly highly verbal, female clients –​earn average scores on some social cognition tests but take a tremendous amount of time (and effort) to do so. If these tests had time limits, they would likely be more sensitive and have more ecological validity. After all, in casual interactions, we can’t take 30 seconds or more to study and interpret someone’s facial expression or 60 seconds to figure out how to respond to a social bid. Finally, some of these

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tests may be relatively insensitive because they artificially provide context for the client, unlike what occurs in real life. That is, by the very act of administering the test and giving specific instructions, we are cueing the client to pay special attention to the stimuli, which may not reflect what they do in real life. To be clear, I still very much value the social cognition tests that I use; however, I feel it is critical for clinicians to be aware of the significant limitations of these measures. There is no gold standard test for clinical diagnosis of autism. There is no single test that can either rule it in or rule it out. This is particularly important to keep in mind when assessing individuals who camouflage. Performance validity measures are important. As in all testing, determine whether the test performance reflects your client’s profile or is instead a reflection of their effort or engagement. To that end, it is important to use performance validity measures with any testing client. Depending on the age of the client, use both stand-​alone measures and embedded measures. Neuropsychological testing is not necessary to diagnose autism. Understanding an individual’s functioning across a broad array of domains, including cognition, language, attention, executive functioning, and academic skills is helpful. However, this understanding is not strictly required to diagnose autism, and assessment can be limited to a social cognition evaluation if there are no concerns about a client’s cognitive or academic functioning. However, if there are concerns about attention, language, executive functioning, or other cognitive or academic skills, it may be advisable to seek a full neuropsychological evaluation in order to take those concerns into account when considering the possibility of autism, as well as to fully understand the client’s strengths and weaknesses. Look for strengths as well as weaknesses. Clients seek neuropsychological evaluations because they have concerns about areas of difficulty, so it is easy for neuropsychologists to focus primarily on these areas and pay little or no attention to strengths. However, a main goal of a neuropsychological evaluation should be to explore the client’s cognitive, academic, social, and personality strengths, as these will be a crucial part of the plan to help the client fully understand themselves and make progress.

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There is no single autistic profile in cognitive testing. There is tremendous heterogeneity in the overall neuropsychological profiles of autistics. For example, many autistic individuals have strong visual-​spatial skills, with a possible weakness or relative weakness in language. This is consistent with the “engineer-​nerd” stereotype of autism. However, other autistic individuals show superior language skills, with a significant or relative weakness in visual-​spatial skills, sometimes referred to as the NVLD profile. Some researchers, such as Robert Joseph and his colleagues, have noted that many autistic students have uneven cognitive profiles (and well-​known autism researcher Deborah Fein has suggested that this is the norm rather than the exception), though there are certainly some autistics who have relatively even profiles. Additionally, autistics often show relative weaknesses in processing speed, executive functioning, motor planning/​execution, and aspects of written expression. IQ can range from very low to very high, language can range from impaired to superior, and attention can be a strength, uneven, or impaired, to name a few possible discrepancies. When present, these challenges can compound the impact of autism or can make the diagnostic decision more complex. For instance, when there is significantly impaired receptive or expressive language, it can be helpful to do your best to estimate the student’s “language age,” that is, the age-​equivalent for the student’s language skills, and then to consider the student’s social development in the context of that age, rather than their chronological age. Allow yourself flexibility with age ranges. I sometimes use social cognition tests with clients who are above the age range of the normative groups. For example, I have found it particularly helpful to administer the Making Inferences subtest of the SLDT with adult clients. While there are not any standard scores or percentiles for these clients, their approach to this task, emotional response to the items, and their raw scores often provide valuable information.

Connecting culture Like rating scales and self-​report measures, social cognition tests may also have poor cultural sensitivity. Be aware of the ways that test bias may affect your results. Test bias brings into question the validity of test scores for certain groups of people. An example of test bias is requiring cultural background

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knowledge to get an item correct. Jo, a Canadian woman, shared her personal experience with test bias. She recalled taking a standardized test when applying for graduate school in the United States. She remembered that one of the items on the test was about the card game poker –​a game with which she was unfamiliar. Jo also vividly recalled that another test item required knowledge of American currency. She was at a disadvantage for several items on this standardized test, not because of her intellectual capacity but because she was unfamiliar with the background knowledge required. There has been limited research to date exploring cultural biases in social cognition tests. However, as a field, we now recognize that those biases likely exist. Be aware of this as you are testing. Notice the cultural sensitivity of the testing materials that you use. Some tests, including some social cognition tests, only or primarily depict White people in the materials. This could potentially affect not only your client’s responses to those materials but also your rapport with the client. Clients measure our understanding and validation of their life experience through the big and small signs we show them. Be open to talking about it, perhaps even initiating the acknowledgment of the lack of diversity in the testing materials.

Examples of social cognition measures Following are brief descriptions of some social cognition assessment measures that I find useful. Only measures that are directly related to social cognition are included. Social Language Development Test (SLDT). The SLDT is one of my preferred measures for a social cognition assessment. There is an elementary version (the SLDT-​E: NU) for ages 6-​0 to 11-​11, which has four subtests. It was originally published in 2008, with a normative update in 2017. There is also an adolescent version (the SLDT-​A: NU) for ages 12-​0 to 17-​11, which has five subtests. This version was originally published in 2010 with a normative update in 2017. What do I like? I have been impressed with the sensitivity of the Social Language Development Test, particularly the Making Inferences subtest on both versions. This subtest goes beyond requiring the client to simply identify how a pictured person might be feeling and instead

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requires the client to imagine what another person may be thinking. I have repeatedly been impressed and grateful for the information gleaned from this subtest in particular and look forward to one day using an adult version of this test. I also like the Multiple Interpretations subtest, which requires the client to think flexibly about a social scenario, offering two different ideas about what might be going on with pictured individuals. Finally, I appreciate that each subtest is independent, and the examiner can choose which subtests seem most relevant for each client. But please be aware: I recommend using caution when giving this test to a client who has a significant expressive language disorder, as their oral responses are scored in part on precision of language. I wish that at least some of the subtests were timed, as some clients are able to earn full points but take an inordinate amount of time to do so, which is not reflected in their scores (but is still data that can be documented). Hopefully the next version will include norms for males, females, trans and non-​binary individuals. Advanced Clinical Solutions for WAIS-​ IV and WMS-​ IV (ACS). Published in 2009, ACS is a group of tasks designed to enhance the clinical utility of the WAIS-​IV and the WMS-​IV. This measure can be used with clients aged 16+​. There are a variety of subtests, including several that assess aspects of social cognition. What do I like? Like the SLDT, examiners can choose to give one or more subtests, and I appreciate that flexibility. I have found the Affect Naming subtest to be the most useful. This subtest requires the client to look at photos of people with different facial expressions and identify, from a limited list, the emotion that is being expressed. This subtest is fairly quick and easy to administer and easy to score, and it can yield some interesting behavioral observations. For instance, some autistic clients move quickly through many cognitive tasks but much more slowly on this task. Other autistic clients have difficulty understanding this task; they may get stuck on whether they need to identify what emotion the actor is actually feeling versus what emotion they think the actor is trying to portray. Because of chronic time limitations with my clients, I have not fully explored some of the other subtests in this battery and plan to do so in the future. But please be aware: I have some concerns about the sensitivity of the Affect Naming subtest, particularly with autistics who have worked

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hard to improve their skills in this domain. There is a difference between someone who can quickly, easily, and intuitively identify emotions in other people’s faces, and someone who can do so but only with great effort. This subtest is not timed, and some autistic clients are able to earn solid scores despite requiring a significant amount of time to do so. This is important information, particularly if they did not have a slow working tempo on non-​social cognition tasks. Additionally, I hope that the next version includes gender-​based norms. Roberts Apperception Test (Roberts-​2). The Roberts-​2, created by Glen E. Roberts and Chris Gruber, was published in 2005 and can be administered to children aged 6 to 18. This measure includes 16 pictures depicting various social situations. The child is asked to tell a story that relates to each pictured scene, with a beginning, middle, and end, and to reference emotions. There are norms for the Roberts-​2, but they require that all 16 cards are administered. I find that completing all 16 cards is exhausting for the child (and for the examiner, who must transcribe each story verbatim) and is generally not worthwhile. Instead, when I administer this task, I typically choose several cards to administer and make qualitative observations, foregoing the scoring. What do I like? This can be a great way of obtaining (a) a language sample from the client, (b) a sample of the client’s ability to form a narrative, and (c) an understanding of the client’s ability to cope with a less structured, more ambiguous task. Some clients enjoy this creative task, while others are stressed by the lack of clarity about what the “right answer” is. This is all useful information. But please be aware: While I find the Roberts-​2 to be useful and administer it often, I nonetheless have a number of concerns. Most notably, the drawings look outdated and are insensitive, even inappropriate. There are separate cards for White, Black, and Latino children, and the examiner must choose which set (if the examiner has all three sets) best matches the child’s race. Additionally, there are five cards that are used for all clients, but the rest are divided into “boy” cards and “girl” cards, and the examiner must choose one or the other. When working with clients who do not fit into a gender binary, explain the problem (and apologize for it) and ask the client which cards they would prefer, boy, girl, or a mix of both. This is hardly an acceptable solution, and I look forward to updated cards in the future.

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Examiners should also be aware that the Roberts-​2 relies on the child’s expressive language skills, so this task may not be suitable for children who have significant difficulty with oral language. I do not like that the manual uses language such as “ ‘better’ or ‘worse’ level of social understanding” (rather than a nonjudgmental focus on differences), though this language does not carry over to test instructions. Finally, though the Roberts-​2 manual states, “Almost all children find the experience interesting and unstressful,” I have found that some autistic children find the ambiguous nature to be off-​putting or anxiety-​provoking. As noted above, this can provide useful information, but it may result in loss of rapport or energy from the client.

Multidimensional measures Note: The MIGDAS-​2 and ADOS-​2 are multidimensional measures that could theoretically be included in other chapters (e.g., the MIGDAS includes a client interview, parent and teacher interviews/​questionnaires, and behavioral observations, as well as a process for organizing and discussing results). Because these measures do not fit neatly into any one category, I made an arbitrary decision to include them in this chapter. MIGDAS-​2. The Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition, was created by Marilyn Monteiro and Sheri Stegall and was published in 2018. The MIGDAS-​2 is not a test per se. Rather, the MIGDAS includes several components to assist the examiner in gathering, organizing, and understanding information about the client, as well as discussing the results. The foundation of the MIGDAS is an interactive, sensory-​based, semi-​structured diagnostic interview with the client. There are different forms of the diagnostic interview for individuals with limited to no verbal fluency, children and adolescents with verbal fluency, and adults with verbal fluency. Additionally, the MIGDAS includes Parent/​Caregiver and Teacher Questionnaires that can be completed as interviews or independently (in writing). The MIGDAS is entirely qualitative, with no scores or norms. What do I like? There are many great benefits to the MIGDAS. Most notably, the MIGDAS does not use ableist language (e.g., “severity of deficits”). Rather, it is based on a neurodiversity-​affirmative, nonjudgmental mindset that highlights differences that are potentially indicative of an autistic style of responding. The MIGDAS can be used with any age and with people who have varying levels of verbal fluency. It is

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a highly flexible measure that prioritizes genuine engagement with the client. It is unique in its focus on intentionally bringing a variety of sensory experiences into the interaction. One of my favorite parts of the MIGDAS is the detailed, highly insightful, and nonjudgmental descriptions of behavioral observations. I sometimes use the behavioral observations even when I have not administered the MIGDAS to a particular client. It is possible to administer the MIGDAS remotely, which can be particularly useful during pandemic lockdowns and for clients who live remotely and cannot easily be seen in person. Finally, the MIGDAS offers a systematic and neurodiversity-​affirmative way for examiners to organize and discuss their results. But please be aware: The MIGDAS has no scoring and no norms. While this does not bother me, some examiners may be uncomfortable with this. I wish that the parent and teacher questionnaires did not say MIGDAS on the front. Quite often, the parents or teachers are not aware that I am considering the possibility of autism, and if they search for “MIGDAS” online, they will learn –​possibly before I am ready for them to do so –​that autism is in the differential. Additionally, I have informally noticed that some evaluators have difficulty adjusting to the flexibility and ambiguity of the MIGDAS. (I loved that one of the autistic reviewers for this book noted, “It’s interesting that some evaluators have ‘difficulty adjusting to the flexibility and ambiguity’ of the most ND affirming of all your tests.”) This is not an issue with the MIGDAS per se but with some testers’ comfort level using a less structured instrument. I encourage clinicians to tolerate this discomfort long enough to become familiar with the MIGDAS; I have found it to be worthwhile! The Autism Diagnostic Observation Schedule, 2nd edition (ADOS-​2). The ADOS-​2, created by Catherine Lord and colleagues and published in 2012, is a semi-​structured, standardized assessment designed specifically for identifying possible autism. There are four modules, based on age and verbal fluency, as well as a Toddler Module. The ADOS-​2 includes standardized activities that are designed to elicit autistic behaviors. After collecting the behavior samples for 40–​60 minutes, the examiner codes the observed behaviors and uses an algorithm to obtain a score. What do I like? Overall, I appreciate the opportunities for behavioral observations presented by the ADOS more than the actual score

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itself. Learning and using the ADOS-​2 helped me think more broadly about how I interact with clients during testing sessions in order to “press” for different types of social interactions and elicit autistic traits and behaviors. As one colleague told me, “I think the ADOS has taught me how to look for some behaviors in a way that I might not have before I was trained.” I like the variety of activities, such as playing with toys (for younger children only), reading a picture book together, and doing activities that elicit gestures. (That being said, I find that I am able to incorporate this range of activities and social presses without using the specific ADOS materials. As another colleague observed, “I have a basket of toys in my room that I use for this on a more informal basis when appropriate. You don’t really need the ADOS for it.”) I also like many of the questions, though they are not necessarily unique to the ADOS. But please be aware: As previously noted, clinicians sometimes inappropriately refer to the ADOS as the “gold standard” for autism assessment in clinical settings. I’ve said it before and will inevitably have to say it again: There is no single test for autism, and this includes the ADOS-​2. I have seen clinicians rely too heavily on this measure or even use it as the sole means for diagnosing or ruling out autism (without even a developmental history or collateral interviews). As the ADOS-​2 authors themselves state, “The ADOS-​2 should never be used in isolation to determine an individual’s clinical diagnosis or eligibility for services….” The ADOS-​2 manual also states, “The ADOS-​2 is only one component of a full diagnostic evaluation for [autism]. It provides information only on current behavior and is based on a limited time sample. Assessment of [autism], like the assessment of other disorders, requires the evaluation of multiple domains of functioning with several instruments and a collection of information from multiple sources. Practitioners using the ADOS-​ 2 must remember that information from this instrument should never be used in isolation to determine an individual’s clinical diagnosis or eligibility for services. For a comprehensive clinical diagnosis, additional information will be required from a developmental history and often from a more lengthy observation, as well as a detailed interview….” The ADOS-​2 manual also specifically mentions the ADI-​R “or other caregiver interviews or questionnaires….” The fact that they only mention “caregiver interviews” suggests that the authors were focused on

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autistic people who require a “caregiver.” This is consistent with my observations that this measure is not appropriate for potentially autistic individuals who do not need a caregiver. While the ADOS can be a useful measure, it is neither necessary nor sufficient for a diagnosis of autism. I, along with Sarah and Jamell, happen to be ADOS-​trained, but we all know many wonderful clinicians who are not and are still perfectly adept at recognizing, understanding, and diagnosing (or ruling out) autism. As stated in the ADOS manual, “It is important to distinguish between an ADOS-​2 Classification and an overall clinical diagnosis. Clinical diagnoses rely on criteria from standard diagnostic systems such as the DSM-​IV-​TR and ICD-​10.” ADOS training and administration are not required in order to assess a client’s manifestation of diagnostic criteria from the DSM or the ICD. Furthermore, the cost of the ADOS-​2 and the training required to use it are prohibitive for many clinicians. In addition to the above-​described concerns about the ways in which the ADOS is used, I have some concerns about the measure itself. I dislike the traditional language that is centered around deficits, abnormalities, and symptom severity and look forward to the possibility of a more neurodiversity-​ affirmative ADOS in the future. Additionally, I am often reluctant to use parts or all of the ADOS with many of my older adolescents or adult clients, as I feel that the tasks can be infantilizing (and I have heard this feedback from numerous autistic individuals). As one colleague told me, “I find it super awkward to play action figures with a 16-​year-​old,” and another colleague observed, “Asking adults to pretend to brush their teeth or read a picture book is not natural, and it can break rapport with the client.” Another consideration is the reliability of the scoring. There is a perception that the ADOS-​2 has strong inter-​rater reliability. That is, if multiple clinicians each score an ADOS protocol, their scores will be very similar to each other. However, this only applies to examiners who have achieved the research-​level of standardization; few clinicians have completed and maintained this level of training. I have spent time jointly scoring several ADOS protocols with a group of psychologists who had all completed the ADOS clinical training, and there was considerable variability in the scoring from person to person. However, my colleagues who have worked in facilities that require a research level of reliability have also commented on the poor inter-​rater

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reliability. As one of them told me, “We would practice, week after week, and we’d all keep getting different scores.” In addition, it is my clinical observation (as well as that of others, e.g., William Mandy and Thomas Frazier) that the ADOS is less sensitive with autistics who are adept at camouflaging. This is likely because some individuals, such as some verbally fluent autistic females, are able to maintain a non-​autistic interaction style (e.g., making typical eye contact, refraining from repetitive behavior, etc.) for periods of time in a structured setting. The ADOS-​2 is based on a limited time sample –​ generally less than an hour, and many autistics with average to above-​ average intellectual/​verbal functioning are certainly able to camouflage for this length of time. As Allison Ratto and her colleagues have noted, measures such as the ADOS, which was developed with a predominantly male sample (with a presumably lower level of camouflaging), do not appropriately capture higher-​camouflaging individuals. Allison Ratto explains that this has become “a self-​perpetuating cycle, by which females whose autistic traits may not align with the ADOS and ADI-​R, or who may be able to ‘pass’ an ADOS, are excluded from research,” and are thus less likely to be recognized in clinical practice. More researchers are beginning to understand and address this issue. In 2022, Anila D’Mello and her colleagues reviewed an MIT database of adults who had community-​based autism diagnoses and wanted to participate in autism-​related studies. To be eligible for the studies, they had to look autistic on one particular test (the ADOS-​2). Of these diagnosed autistics, only 81% of the men and only 50% of the women met the ADOS cutoff score required for inclusion in autism studies! These were individuals who were already diagnosed! The researchers found the same results in six other databases, which included more than 40,000 adults who had been diagnosed as autistic. We cannot and should not rule out autism simply because an individual can “pass as neurotypical” for less than an hour with a clinician. Indeed, anyone not adequately represented in the validation sample (which potentially includes females, the highly intelligent, and people

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of color) is not accurately reflected in the normative data. And because the data do not reflect these individuals, they are more vulnerable to be missed in clinical practice. Furthermore, autistics who camouflage have likely been omitted from many studies over the years, so their presentation of autism is not reflected in the scoring or algorithms of this test. As Meng-​Chuan Lai and his colleagues have noted, in module 4 of the original ADOS study, “only 2 out of 16 in the ‘autism’ group and three out of 14 in the ‘PDD-​NOS’ groups were female.” If female autistics camouflage more than males, which is entirely likely, and camouflaging females are not represented in the studies, then it follows that the scoring and algorithms are at significant risk of missing this population. This limitation with the clinically ascertained samples has been noted by researchers such as Aaron Kaat and his colleagues and is consistent with my clinical experience with the ADOS. Another reason the “gold standard” is not an appropriate designation is that the ADOS does not evaluate how an individual interacts with their peers, nor does it take a client’s history into account. Susanne Duvall and her colleagues noted, “Given that the coding of the ADOS-​2 is derived from a single approximately hour-​long observation, it does not include information regarding a child’s early developmental history or yield information about how a child performs with peers or with other familiar or unfamiliar adults. Moreover, the ADOS-​2 provides information only on current behaviors….” I wholeheartedly agree with these researchers, who also note that in some cases, “It may be appropriate to place less emphasis on ADOS-​2 scores and cut off, and instead use the rich observations and clinical information obtained from the ADOS-​2 to map onto the DSM-​5-​TR or ICD-​11 diagnostic criteria in concert with information gathered from collateral sources and early history.” Finally, it is relevant to note that the ADOS-​2 cannot be used remotely or scored with other safety protocols, such as masks or social distancing, in place.

Frequently asked question • Can I diagnose autism if I don’t do formal testing? Neither social cognition testing nor neuropsychological testing is necessary for a diagnosis of autism. As long as you are a licensed healthcare

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professional who is permitted to diagnose autism (this varies by location), you can diagnose autism using agreed-​upon diagnostic criteria and collecting information through a variety of sources (interviews, observations, rating scales, documentation). Testing can be helpful but is not always necessary.

References and related reading Adamou, M., Johnson, M., & Alty, B. (2018). Autism Diagnostic Observation Schedule (ADOS) scores in males and females diagnosed with Autism: A naturalistic study. Advances in Autism, 4, 49–​55. https://​doi.org/​10.1108/​ AIA-​01-​2018-​0003 Alsaedi, R. H., Carrington, S., & Watters, J. J. (2020). Behavioral and neuropsychological evaluation of executive functions in children with autism spectrum disorder in the Gulf region. Brain Sciences, 10(2), 120. https://​doi.org/​ 10.3390/​brain​sci1​0020​120 American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://​doi.org/​10.1176/​appi.books.978089​ 0425​787 Becker, M. M., Wagner, M. B., Bosa, C. A., Schmidt, C., Longo, D., Papaleo, C., & Riesgo, R. S. (2012). Translation and validation of Autism Diagnostic Interview-​Revised (ADI-​R) for autism diagnosis in Brazil. Arquivos de Neuro-​ Psiquiatria, 70(3), 185–​190. https://​doi.org/​10.1590/​S0004-​282X20​1200​ 0300​006 Bishop, S. L., Sweeney, M. P., Huerta, M., Havdah, A., & Lord, C. (2017, May 10–​13). Sex differences in ADOS-​2 scores and classifications among verbally fluent children with autism spectrum disorder [Conference presentation]. International Meeting for Autism Research, San Francisco, CA, United States. https://​ insar.con​fex.com/​insar/​2017/​web​prog​ram/​Pap​er25​811.html Bowers, L., Huisingh, R., & LoGiudice, C. (2017). Social Language Development Test–​ Adolescent: Normative Update (SLDT-​ E: NU). Western Psychological Services. Braconnier, M. L., & Siper, P. M. (2021). Neuropsychological assessment in autism spectrum disorder. Current Psychiatry Reports, 23(10), 63. https://​doi. org/​10.1007/​s11​920-​021-​01277-​1 Carter, J. A., Lees, J. A., Murira, G. M., Gona, J., Neville, B. G. R., & Newton, C. R. J. C. (2005). Issues in the development of cross-​cultural assessments of speech and language for children. International Journal of Language & Communication Disorders, 40(4), 385–​401. https://​doi.org/​10.1080/​136828​ 2050​0057​301

Social cognition testing  173 Charman, T., & Gotham, K. (2013). Measurement issues: Screening and diagnostic instruments for autism spectrum disorders —​lessons from research and practise. Child and Adolescent Mental Health, 18(1), 52–​63. https://​doi.org/​ 10.1111/​j.1475-​3588.2012.00664.x Demetriou, E. A., Lampit, A., Quintana, D. S., Naismith, S. L., Song, Y. J. C., Pye, J. E., Hickie, I., & Guastella, A. J. (2018). Autism spectrum disorders: A meta-​analysis of executive function. Molecular Psychiatry, 23(5), 1198–​1204. https://​doi.org/​10.1038/​mp.2017.75 Duvall, S., Armstrong, K., Shahabuddin, A., Grantz, C., Fein, D., & Lord, C. (2021). A road map for identifying autism spectrum disorder: Recognizing and evaluating characteristics that should raise red or “pink” flags to guide accurate differential diagnosis. The Clinical Neuropsychologist, 36(5), 1172–​1207. https://​doi.org/​10.1080/​13854​046.2021.1921​276 Finnegan, E., & Accardo, A. L. (2018). Written expression in individuals with autism spectrum disorder: A meta-​analysis. Journal of Autism and Developmental Disorders, 48(3), 868–​882. https://​doi.org/​10.1007/​s10​803-​017-​3385-​9 Foley-​Nicpon, M., Fosenburg, S. L., Wurster, K. G., & Assouline, S. G. (2017). Identifying high ability children with DSM-​5 autism spectrum or social communication disorder: Performance on autism diagnostic instruments. Journal of Autism and Developmental Disorders, 47(2), 460–​471. https://​doi.org/​ 10.1007/​s10​803-​016-​2973-​4 Frazier, T. W., Georgiades, S., Bishop, S. L., & Hardan, A. Y. (2014). Behavioral and cognitive characteristics of females and males with autism in the Simons Simplex Collection. Journal of the American Academy of Child and Adolescent Psychiatry, 53(3), 329–​340.e1-​3. https://​doi.org/​10.1016/​ j.jaac.2013.12.004 Gotham, K., Pezzimenti, F., Eydt-​Beebe, M., Han, G. T., & Herrington, C. (2020). Co-​occurring mood problems in autism spectrum disorder. In S. W. White, B. B. Maddox, & C. A. Mazefsky (Eds.), The Oxford handbook of autism and co-​occurring psychiatric conditions (New product ed., pp. 29–​51). Oxford University Press. Harrison, A. J., Long, K. A., Tommet, D. C., & Jones, R. N. (2017). Examining the role of race, ethnicity, and gender on social and behavioral ratings within the Autism Diagnostic Observation Schedule. Journal of Autism and Developmental Disorders, 47(9), 2770–​2782. https://​doi.org/​10.1007/​s10​ 803-​017-​3176-​3 Joseph, R. M., Tager-​F lusberg, H., & Lord, C. (2002). Cognitive profiles and social-​communicative functioning in children with autism spectrum disorder. Journal of Child Psychology and Psychiatry, 43(6), 807–​821. https://​doi.org/​ 10.1111/​1469-​7610.00092

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Keehn, B., Müller, R.-​A., & Townsend, J. (2013). Atypical attentional networks and the emergence of autism. Neuroscience and Biobehavioral Reviews, 37(2), 164–​183. https://​doi.org/​10.1016/​j.neubio​rev.2012.11.014 Lai, M.-​C., Lombardo, M. V., Pasco, G., Ruigrok, A. N. V., Wheelwright, S. J., Sadek, S. A., Chakrabarti, B., MRC AIMS Consortium, & Baron-​Cohen, S. (2011). A behavioral comparison of male and female adults with high functioning autism spectrum conditions. PloS One, 6(6), e20835. https://​doi.org/​ 10.1371/​jour​nal.pone.0020​835 Lai, M.-​C., & Szatmari, P. (2020). Sex and gender impacts on the behavioural presentation and recognition of autism. Current Opinion in Psychiatry, 33(2), 117–​123. https://​doi.org/​10.1097/​YCO.00000​0000​0000​575 Lord, C., Risi, S., Lambrecht, L., Cook, E. H., Leventhal, B. L., DiLavore, P. C., Pickles, A., & Rutter, M. (2000). The autism diagnostic observation schedule-​generic: A standard measure of social and communication deficits associated with the spectrum of autism. Journal of Autism and Developmental Disorders, 30(3), 205–​223. Lord, C., Rutter, M., DiLavore, P. C., Risi, S., Gotham, K., & Bishop, S. L. (2012). Autism Diagnostic Observation Schedule, Second Edition (ADOS-​2). Western Psychological Services. Mandy, W., Chilvers, R., Chowdhury, U., Salter, G., Seigal, A., & Skuse, D. (2012). Sex differences in autism spectrum disorder: Evidence from a large sample of children and adolescents. Journal of Autism and Developmental Disorders, 42(7), 1304–​1313. https://​doi.org/​10.1007/​s10​803-​011-​1356-​0 Manohari, S. M., Raman, V., & Ashok, M. V. (2013). Use of Vineland Adaptive Behavior Scales-​II in children with autism —​an Indian experience. Journal of Indian Association for Child and Adolescent Mental Health, 9(1), 5–​12. Ming, X., Brimacombe, M., & Wagner, G. C. (2007). Prevalence of motor impairment in autism spectrum disorders. Brain and Development, 29(9), 565–​ 570. https://​doi.org/​10.1016/​j.brain​dev.2007.03.002 Monteiro, M. J., & Stegall, S. (2018). Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition (MIGDAS-​ 2). Western Psychological Services. Napoli, S. B., Vitale, M. P., Cafiero, P. J., Micheletti, M. B., Bradichansky, P. P., Lejarraga, C., Urinovsky, M. G., Escalante, A., Rodriguez, E., & Schiariti, V. (2021). Developing a culturally sensitive ICF-​ based tool to describe functioning of children with autism spectrum disorder: TEA-​CIFunciona Version 1.0 pilot study. International Journal of Environmental Research and Public Health, 18(7), 3720. https://​doi.org/​10.3390/​ije​rph1​8073​720 Ratto, A. B., Anthony, B. J., Kenworthy, L., Armour, A. C., Dudley, K., & Anthony, L. G. (2016). Are non-​intellectually disabled Black youth with

Social cognition testing  175 ASD less impaired on parent report than their White peers? Journal of Autism and Developmental Disorders, 46(3), 773–​781. https://​doi.org/​10.1007/​s10​ 803-​015-​2614-​3 Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-​Brown, K., Martin, A., & Anthony, L. G. (2018). What about the girls? Sex-​based differences in autistic traits and adaptive skills. Journal of Autism and Developmental Disorders, 48(5), 1698–​1711. https://​doi. org/​10.1007/​s10​803-​017-​3413-​9 Rea, K. E., Armstrong-​Brine, M., Ramirez, L., & Stancin, T. (2019). Ethnic disparities in autism spectrum disorder screening and referral: Implications for pediatric practice. Journal of Developmental & Behavioral Pediatrics, 40(7), 493–​500. https://​doi.org/​10.1097/​DBP.00000​0000​0000​691 Roberts, G. (2005). Roberts Apperception Test for Children-​2. Western Psychological Services. Shulman, C., Rice, C. E., Morrier, M. J., & Esler, A. (2020). The role of diagnostic instruments in dual and differential diagnosis in autism spectrum disorder across the lifespan. Child and Adolescent Psychiatric Clinics of North America, 29(2), 275–​299. https://​doi.org/​10.1016/​j.chc.2020.01.002 Stoll, M. M., Bergamo, N., & Rossetti, K. G. (2021). Analyzing modes of assessment for children with autism spectrum disorder (ASD) using a culturally sensitive lens. Advances in Neurodevelopmental Disorders, 5(3), 233–​244. https://​ doi.org/​10.1007/​s41​252-​021-​00210-​0 Sun, X., Allison, C., Auyeung, B., Zhang, Z., Matthews, F. E., Baron-​Cohen, S., & Brayne, C. (2015). Validation of existing diagnosis of autism in mainland China using standardised diagnostic instruments. Autism, 19(8), 1010–​ 1017. https://​doi.org/​10.1177/​13623​6131​4556​785 Supekar, K., & Menon, V. (2015). Sex differences in structural organization of motor systems and their dissociable links with repetitive/​restricted behaviors in children with autism. Molecular Autism, 6, 50. https://​doi.org/​10.1186/​s13​ 229-​015-​0042-​z Wechsler, D. (2009). Advanced clinical solutions for WAIS-​ IV and WMS-​ IV. Pearson. World Health Organization. (2019). International statistical classification of diseases and related health problems (11th ed.). https://​icd.who.int/​ Young, H., Oreve, M.-​ J., & Speranza, M. (2018). Clinical characteristics and problems diagnosing autism spectrum disorder in girls. Archives De Pediatrie: Organe Officiel De La Societe Francaise De Pediatrie, 25(6), 399–​403. https://​doi.org/​10.1016/​j.arc​ped.2018.06.008

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Zeliadt, N. (2017, May 13). Diagnostic tests miss autism features in girls. Spectrum News. www.spect​rumn​ews.org/​news/​dia​gnos​tic-​tests-​miss-​aut​ism-​featu​res-​ girls/​ Zhang, J., Wheeler, J. J., & Richey, D. (2006). Cultural validity in assessment instruments for children with autism from a Chinese cultural perspective. International Journal of Special Education, 21(1), 109–​114. https://​soar.suny. edu/​han​dle/​20.500.12648/​2223

Chapter 9

Traits and diagnoses that can be confused with autism

This chapter aims to provide a basic understanding of the overlaps and differences between autism and some commonly confused diagnoses. While autism can coexist with most of these conditions (it’s not necessarily either/​or), the focus of this chapter is on differentiation, rather than co-​occurrence, and particularly on reasons that autism may be missed. A discussion of the many ways that other conditions can be mistaken for autism is not included, as this is not a comprehensive chapter on differential diagnosis. There is no substitute for the years of clinical training, supervision, and experience that are often needed to cope with a complex differential diagnosis. For more detailed information on the many conditions that can co-​occur with autism, please see my prior book (with Sarah Wayland), Is This Autism? A Guide for Clinicians and Everyone Else. This chapter offers general principles, then provides a relatively in-​ depth discussion of one important and often-​misunderstood differential relevant to children (giftedness), as well as one relevant to adults (personality disorders). It then briefly reviews other (though certainly not all) common confusing diagnoses/​challenges, including: • ADHD • Social anxiety disorder • OCD • Selective mutism • Oppositional defiant disorder (ODD) • Bipolar disorder DOI: 10.4324/9781003403838-10

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• Depression • Disruptive mood dysregulation disorder (DMDD) • Eating disorders • Trauma • Reactive attachment disorder • Psychosis • Social (pragmatic) communication disorder • Non-​verbal learning disorder (NVLD) • Broader autism phenotype

General principles Remember the law of parsimony. Many autistic individuals have had multiple contacts with a variety of mental health professionals over the course of their lives. In my experience, autism has occasionally been considered and ruled out for these clients, but far more frequently it does not appear to have even been considered. Instead, these individuals often have many diagnoses, each addressing a single aspect of their presentation. The most effective clinicians step back, look at the big picture, and work to (insofar as possible) integrate all of the client’s strengths and challenges into a diagnosis that meaningfully describes not a single behavior or skill but the client as a whole. As Susanne Duvall and her colleagues have noted, “Because of the overlap in symptoms across diagnoses, it is not unusual for an individual with [autism] to be misdiagnosed with multiple disorders rather than [autism]. A concept that may be helpful in clarifying the assessment in these cases is the notion of parsimony…. it may be worth reassessing the constellation of symptoms and considering if [autism] is a more overarching, accurate and parsimonious diagnosis.” 9-​year-​old Kara has seen many well-​qualified and dedicated professionals throughout her life, and each has offered a diagnosis and associated treatment plan. These have included sensory processing disorder by an occupational therapist; social/​pragmatic language disorder by a speech

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language pathologist; social anxiety disorder by a psychologist; ADHD by a neuropsychologist; and irritable bowel syndrome by a gastroenterologist. Feeling that no one fully understood her daughter, Kara’s mother did some research and found that autism was the one diagnosis that could explain all of Kara’s challenges. None of the clinicians involved, including her pediatrician, had ever stepped back to consider Kara’s entire presentation.

It is essential to understand the developmental history, trajectory, and context. As you will see in this chapter, understanding the developmental history and trajectory is often a primary way of distinguishing autism from other possible diagnoses. In addition, clinicians should always consider the context, intention, and patterns of behavior when trying to determine the underlying causes for symptoms that are superficially similar. For instance, Robert Dudas and his colleagues reported that both autistics and people with borderline personality disorder (BPD) are at risk for self-​harm related to emotional dysregulation; however, autistic self-​harm is more associated with sensory overload while borderline self-​harm is linked more to interpersonal conflict. Subjective experience is just as important, if not more so, than observable behaviors. It is always important to try to understand the internal lived experience underlying observable behaviors. For instance, if a family has company over for dinner, and the child is reluctant or refuses to join everyone at the table, people may assume that they are experiencing social anxiety. However, the behavior could also result from their discomfort with deviation from a routine, confusion about the social expectations involved, or the sensory overload of the situation –​characteristics more suggestive of autism. Pay close attention to the “fine print” in the DSM. Before making a diagnosis, a clinician is often explicitly required to assess whether their client’s presentation is “not better explained by the symptoms of another mental disorder” (which, according to the DSM, includes autism). This implies that the “other mental disorder” should be preferentially diagnosed if it provides a clear characterization of the client’s traits, gifts, and challenges. Whenever this caveat is present in the DSM, the diagnosis in question should only be considered if other possibilities, including autism, have been ruled out or the symptoms are above and beyond what one would

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expect from autism. This is the case whether or not autism is specifically listed as “another mental disorder.” For the diagnoses discussed in this chapter, social anxiety disorder, disruptive mood dysregulation disorder, and social/​pragmatic communication disorder all require this rule-​out. Additionally, selective mutism and personality disorders each have rules that are similar, which are discussed below.

Some traits and diagnoses that can be confused with autism Giftedness1 In this context, giftedness refers to intellectual giftedness, and this section discusses research relevant to gifted children, though presumably much of this could be extrapolated to adults. There are many parents, teachers, and healthcare professionals who maintain the outdated belief that an intellectually gifted child is bound to experience social difficulty, sensory challenges, and/​or anxiety, simply because they are gifted. The research differentiating giftedness and autism is limited, and much of it is founded on outdated beliefs about autistics, e.g., that “they lack empathy,” and that “notable historical figures” who have been theorized to be autistic are unlikely to have had autism, given their “profound creativity and accomplishments.” (Yes, I was horrified when I read this in a well-​known text on gifted children.) When a gifted child has these sorts of challenges, they are often attributed to the giftedness, and autism is not even considered as a possibility. Of note: Gifted is a broad category. Individuals who are mildly or moderately gifted are not expected to be as developmentally different as those who are exceptionally or profoundly gifted. Moreover, for the purpose of this discussion, gifted children are assumed to be those who are intellectually gifted but have no other challenges or co-​occurring conditions. Overlap Both intellectually gifted children (GC) and autistic children (AC) have a tendency toward deep interests, though non-​autistic GC are generally better able to “turn it off.” Sensory over-​responsivity is common in both groups as well, although GC are less likely to be significantly impacted by their sensitivities (e.g., with frequent/​intense meltdowns). GC and AC are both prone to experience strong feelings about moral/​justice issues,

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although AC are likely to adhere more rigidly to these beliefs. Finally, both may have difficulty making and keeping friends among their same-​aged peers, although in GC this tends to occur only when they do not have access to well-​matched peers. Differences Social reciprocity. GC are not expected to have difficulty with social reciprocity (e.g., taking others’ perspectives, knowing what to talk about in different situations, having an intuitive sense of how group dynamics work, understanding why social norms are important, etc.), while these skills are generally less automatic and more effortful and exhausting for AC. Though profoundly gifted kids may have difficulty relating to same-​ aged peers who lack their in-​depth knowledge of a given topic, they can engage reciprocally on a wide range of other topics. Nonverbal communication. GC should not have particular difficulty reading social cues, attending to personal space, managing vocal volume, expressing a wide range of affect that matches situations, etc. Sensory craving/​under-​responsivities. These are not common in GC. Repetitive behaviors. GC do not exhibit repetitive language, e.g., echolalia and repetition of phrases, and generally do not stim. Flexibility. A need for sameness/​routine is almost always a feature of autism but is not expected in GC, among whom flexibility is, in fact, often a strength. Low muscle tone/​coordination. GC do not have low muscle tone/​coordination issues, in the absence of co-​occurring conditions. In fact, GC can be advanced in motor coordination (e.g., early walking), and gifted girls in particular may develop writing skills early and have excellent fine motor skills. In contrast, many (though not all) AC have issues with coordination and tone. Adaptive functioning. Difficulty with aspects of adaptive functioning are common in AC but not in GC. Emotional intensity, anxiety, and dysregulation. Many people seem to feel that GC are more vulnerable to anxiety or emotional intensity. While GC may be more emotionally aware and feel things deeply, they are not prone toward the intense dysregulation that is often observed in AC. In fact, Deirdre Lovecky, a prominent author who specializes in GC, explains that most GC are generally more resilient, have fewer mental health problems (including less anxiety), and are more likely to be leaders

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among their peers (exceptions to this include the higher prevalence of anxiety in profoundly gifted children –​with an IQ of 175 or more –​and the higher prevalence of bipolar disorder in the gifted population more generally). Dr. Lovecky states that GC can be perfectionistic but do not tend to experience anxiety related to their perfectionism and are not more anxious in general. She states, “When I see high anxiety in gifted kids, especially girls, I look for hidden ADHD and autism, as anxiety can be a cover for these diagnoses. Also it is important to remember that while gifted kids can have anxiety disorders, research suggests that the prevalence isn’t greater than for kids with average intelligence.” Speed. In GC, processing speed tends to be average to well above average, while AC can have relatively low processing speed. This can be seen on the WISC-​V’s Processing Speed Index (PSI) and in the scatter between timed and untimed tests (e.g., Matrix Reasoning vs. Figure Weights). Qualitatively, general working/​conversing tempo is expected to be at least average (and possibly faster) in GC but may be slow in AC. Context sensitivity. GC often generalize easily, while AC can have significant difficulty in this area. In summary The biggest myth is that any quirks or challenges that gifted individuals display are rooted in their giftedness, and that it is not necessary to consider the possibility of other diagnoses, such as autism. Instead, it’s very important to look further with these kids. In unpublished data collected by Drs. Jessica Koehler and Samantha Buell, one sample of 1,263 gifted children suggested that 7.77% were autistic (and in my opinion, this may have been an underestimate, due to misunderstanding of autism and under-​diagnosis). And as Dr. Lovecky advises, “by not offering them a diagnosis (of autism), you limit what you can give them in terms of services and potentially affect the rest of their lives.” Personality disorders Both autism and personality disorders (PDs) are characterized by enduring and pervasive communication, emotional, and/​or relationship challenges, so it is not surprising that many clinicians find the

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differential confusing. While it is beyond the scope of this chapter to provide in-​depth guidance on this matter, this chapter offers some thoughts about PDs and autism in general, as well as each PD in particular. Additionally, while autism and PDs can co-​exist, comments here focus on aspects of autism that can make autistics look like they have a personality disorder when they may not. Before the DSM describes the criteria for each of the specific PDs, it describes the general personality disorder (GPD) criteria. (This is not a diagnosis per se but is the foundational criteria for all of the specific PDs.) For this reason, my discussion begins with the GPD criteria. Criterion A characterizes a personality disorder as “An enduring pattern of inner experience and behavior that deviates markedly from the expectations of the individual’s culture” manifested in at least two areas, including cognition, emotions, social functioning, and impulse control. Criterion B indicates that the pattern is “inflexible and pervasive” across different situations. Criterion C notes that the pattern causes “clinically significant distress or impairment in social, occupational, or other areas of functioning.” Sound familiar? None of these help differentiate autism from PDs. Criterion D notes that the stable, longstanding pattern of PD must have an onset that traces back “at least to adolescence or early adulthood.” This offers a possible point of differentiation between autism and PDs, because autism is present from birth and (theoretically) diagnosed in early childhood. However, it won’t be helpful if the individual has been so good at masking and compensating that no one has considered that they might be autistic until they are older. Indeed, Meng-​ Chuan Lai and Simon Baron-​Cohen noted in 2015 that many people are diagnosed with autism in adulthood, and, as Judith Barnard and her colleagues (among others) have found, a high percentage of autistics (potentially as high as 46%!) do not receive an autism diagnosis until adulthood. In fact, Laura Fusar-​Poli and her colleagues found that personality disorder diagnoses were among the most common diagnoses that autistic adults were given, before they were recognized and diagnosed as autistic. Thus, while age of onset is sometimes used to differentiate PDs from autism, it is now clear that the behavioral manifestations of autism may not become apparent until adolescence or even adulthood, when environmental demands outstrip the person’s ability to mask or otherwise compensate.

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GPD Criterion E is a key to the differential. It states, “The enduring pattern is not better explained as a manifestation or consequence of another mental disorder.” This implies that “another mental disorder,” which would include autism, has precedence if it can adequately explain the pattern of characteristics the client displays. Thus, the possibility of autism should be considered before any PD diagnosis is given (and should be considered now for clients with pre-​existing diagnoses of PD if it hasn’t been already). This guideline should apply to any PD, even though the DSM-​5-​TR only explicitly requires clinicians to consider the possibility of autism when diagnosing schizoid and schizotypal PD. Additionally, PD-​like traits can be a direct result of underlying autism. These traits may emerge as an autistic person attempts to navigate a world designed for non-​autistics. For instance, if a previously undiagnosed autistic person has severe sensory and social challenges and has not received support or understanding, over time they may become avoidant and/​or dependent, similar to the presentation of someone with avoidant or dependent PD. These PD traits are thus a direct result of living with autism, and a PD diagnosis would not be appropriate (or helpful). Thus, many individuals diagnosed with PDs may in fact be undiagnosed autistics. In fact, according to Sandra Strunz and other researchers, autistic people are vulnerable to being misdiagnosed with PDs prior to receiving an appropriate diagnosis. Despite the clear mandate to explicitly rule out “other mental disorders” when diagnosing PDs, autism is frequently not considered. This is likely because autism is, in theory, discovered and diagnosed early in life, which means that if a client presents for evaluation or treatment in late adolescence or adulthood, many clinicians do not even think to include autism in the differential. Moreover, as Tove Lugnegård and colleagues have noted, PDs are mostly diagnosed in adult psychiatric settings, where it is likely difficult or impossible to obtain a thorough developmental history from a parent, without which autism could easily be overlooked. Indeed, Johan Nyrenius and his colleagues recently screened for autism in every new referral to an adult psychiatric clinic and ultimately found that at least 18.9% (and possibly up to 35%) had undiagnosed autism! Of further note, the very clinicians who are most likely to diagnose a PD, i.e., those working with adults, are also likely to have had little training in autism. As one adult psychiatrist recently told me, “I had almost no training about diagnosing autism,

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because the assumption was that if they were autistic, they would have been diagnosed in childhood, so I did not need to consider that possibility with adults who had not been diagnosed before.” Finally, before entering a discussion about specific PDs, I would like to pass along advice from my colleague Theresa Regan: It’s not possible to offer specific, objective ways to differentiate autism from each PD. Rather, clinicians need to gather as much information as possible and consider the big picture for each client. At age 32, Jack was still living at home, despite having a college degree. He had been unable to maintain employment or relationships due to his severe anxiety, and he spent most of his time alone in his room. Jack was diagnosed with avoidant personality disorder, based on his behavioral presentation. Factors that were not considered included his well-​documented history of delayed language, his diagnosis of ADHD at age 6, his longstanding history of social anxiety and limited friendships, and his participation in therapy for video game addiction in adolescence. After noting these pink flags, Jack’s neuropsychologist did a thorough evaluation and found ample evidence for autism. When considered in combination, Jack’s current presentation and history was best explained by a diagnosis of autism. Unlike the personality disorder diagnosis, this offered Jack and his family a deeper understanding of his needs and a road map for moving forward.

Schizoid and schizotypal PD There is a history of overlap and confusion between these two PDs and autism. The DSM-​5-​TR states that neither schizoid nor schizotypal PD “occurs exclusively during the course of autism spectrum disorder.” This implies that autism must be ruled out before a diagnosis of either of these personality disorders can be considered. When considering differential diagnosis, it is key to determine whether two of the four categories of repetitive/​restricted behaviors and interests are present, as these are indicative of autism but not of these two PDs. Paranoid PD The DSM-​5 notes that paranoid PD “may be first apparent in childhood and adolescence with solitariness, poor peer relationships, social

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anxiety, underachievement in school, hypersensitivity, peculiar thoughts and language, and idiosyncratic fantasies.” Sound familiar? The potential overlap of paranoid PD and autism lies in a tendency to attribute negative intention where it does not exist. In autism, however, the suspiciousness is likely related to either: (a) misreading cues and misunderstanding others’ intentions; and/​or (b) hypervigilance due to repeated negative social experiences and/​or social trauma. As Tove Lugnegård and colleagues have noted, “paranoid traits can sometimes be seen in [autistics] and can be understood in light of great difficulties in understanding the intention of others, a different manner of thought processing, and in some cases, negative experiences (e.g., being bullied…).” Borderline PD Authors such as Göran Rydén and colleagues have found that some females who have been diagnosed with BPD are also, or actually, autistic. Autistic people and those with BPD may both exhibit difficulty with interpersonal functioning, being perceived as having poor empathy, and having difficulty building and maintaining close, trusting, and stable relationships. Autistics can have black-​and-​white thinking about others, which can look similar to the “extremes of idealization and devaluation” in BPD. However, autistics do not rapidly and repeatedly alternate between idealization and devaluation in relationships (i.e., “I love you I hate you, I love you, I hate you,” in rapid succession), which is a hallmark of BPD. Other shared traits/​symptoms can include interpersonal hypersensitivity, stress-​sensitivity, impulsivity, unstable mood, poor affect regulation, and self-​harm. Individuals in both groups are likely to have a family history of mental health challenges, such as eating disorders or depression. Some suggest that individuals in either group can have difficulty understanding their own or others’ emotions, though Lai and Baron-​Cohen report that nonverbal communication impairment “is rarely present in borderline personality disorder.” Another possible area of overlap is difficulty forming a stable sense of identity; some autistic individuals have trouble with this due to poor interoceptive awareness (i.e., you can’t know yourself if you have difficulty reading the signals from your body) and/​or persistent masking (which makes it hard to develop a sense of who they really are). However, the underlying causes and patterns of behavior are different. Autism is well understood to be a neurologically based difference that is present

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from birth. In contrast, BPD has historically been associated with environmental factors, particularly developmental trauma and subsequent fear of abandonment. As Robert Dudas and his colleagues have noted, emotional dysregulation (including suicidal ideation and non-​suicidal self-​injury) in BPD clients tends to center around interpersonal relationships and conflict, while emotional dysregulation in autistic clients is more likely related to sensory overload and/​or a need for sameness/​ predictability. The same authors also found that individuals with BPD were more extraverted, open to new experiences, and less conscientious than autistics. I strongly agree with Meng-​Chuan Lai and Simon Baron-​Cohen, who conclude that autism should “be ruled out before a diagnosis of borderline personality disorder is made. Differential diagnosis should take into account developmental history… and involve a detailed assessment of non-​verbal communication impairment, which is rarely present in borderline personality disorder but central to autism spectrum conditions. Equally, individuals with borderline personality disorder do not typically show the narrow interests, repetition, or insistence on sameness that are characteristic of autism spectrum conditions.” Similarly, Robert Dudas and colleagues stressed the need to assess for autism in clients who are suspected of having borderline PD, particularly those who have no history of significant childhood abuse or neglect. It is also important to be aware of individuals who have both autism and BPD, as they may be at particularly high risk for self-​harm. As my colleague Wendy Law pointed out, BPD can develop in autistics resulting from traumatic life experiences compounded by the chronic invalidation that comes with not knowing one is autistic. It is particularly important to determine if autism is present in these individuals because (a) it changes their internal narrative, (b) it changes the narrative of those around them, and (c) it has tremendous implications for intervention and support. For instance, the primary treatment for BPD is psychotherapy, but for autism, changing the environment (sensory, interpersonal expectations, etc.) is crucial. Antisocial PD One area of overlap between people diagnosed with antisocial PD and autistics is “failure to conform to social norms.” However, while antisocials seem to relish harming others, autistics do not and in fact

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generally lack awareness in the moment that they are causing discomfort in others and often feel badly when they become aware. Antisocials are likely to engage in unlawful behavior, while autistics are more likely to be rule followers who only break the law for very specific reasons (e.g., stalking someone who has become an intense interest, stealing an object due to sensory craving). Deceitfulness for profit or pleasure, a common feature of antisocial PD, is not common in autistics. Autistics (who are generally not as adept at lying) only tend to deceive others for a specific purpose, such as avoiding a non-​preferred task or trying to fit in socially. People with antisocial PD also crave thrills, which is different from craving sensory stimulation. Poor empathy is a potential area of superficial overlap. However, as noted in the chapter on reciprocity in Is This Autism? A Guide for Clinicians and Everyone Else, autistics are more likely to struggle with cognitive empathy, while those with antisocial PD are more likely to have good cognitive empathy but low affective empathy. As Tove Lugnegård and colleagues noted, “a main distinction is that the manipulating manner seen in psychopathy requires good understanding of others’ thoughts and feelings, which contrasts to the core difficulties of [autism].” Similarly, as Lai and Baron-​Cohen explain, “adults with autism spectrum conditions might seem unempathic, for example because they do not read the mental states underlying another person’s emotional expressions or infer that the other person is expecting to be comforted. By contrast, when they hear or are explicitly told that another person is suffering, many autistic individuals become upset, which reflects intact affective empathy, and they are motivated to help (i.e., have intact sympathy).” It is also worth noting that neuro-​crash, burnout, and sensory overwhelm can all cause autistic people to act as though they don’t have affective empathy, when in fact they do. Efforts to avoid or manage these challenges should not be interpreted as not caring. Narcissistic PD The potential overlap between narcissists and autistics lies in egocentricity. Individuals in both groups may behave in ways that cause discomfort, embarrassment, or pain for others, while also having a rigid expectation that others will agree with them or adhere to their expectations. However, for each area of overlap, there are differences in motivation. First, people in either group may correct others and insist

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that they themselves are correct. However, in these cases, the narcissist wants credit for being right; it feeds their ego to be revered for their knowledge base. In contrast, when autistic individuals do this, their focus is more about the information itself; they will correct you because the details matter to them, not because it feeds their ego. Second, people in either group may talk excessively and expect others to be interested. However, narcissists do this to be the center of attention and to be admired, while autistics rarely have attention and admiration as their primary motivation. Rather, when autistics talk excessively, it is because of their passion for the topic and/​or because it is simply their conversational style. Third, while people in both groups may have difficulty understanding the effects of their words and actions on others, when they do become aware, many autistics have the capacity for affective empathy; they care. In contrast, if narcissists become aware of their effect on others, it is inevitably the other person’s fault (e.g., they see the other person as overly sensitive). Finally, while narcissists can be highly manipulative in service to their ego (e.g., gaslighting, baiting, using “flying monkeys”), autistics rarely intentionally manipulate others. Histrionic PD There seems to be a lower incidence of confusion between histrionic personality disorder and autism. The core characteristic of histrionic PD is attention seeking, and while autistic individuals may attempt to control social interactions in order to make them more predictable, they do not generally do this in order to be the center of attention. Still, there can be symptoms that appear to overlap. For instance, people with histrionic PD tend to exhibit shallow and rapidly shifting emotions, and autistic individuals may come across as disingenuous or emotionally shallow, often because they are trying to show an emotion that they don’t actually feel in order to meet a social expectation. In addition, some autistic females have an intense interest in makeup or fashion, but unlike histrionics, this behavior does not tend to be attention seeking in nature. Avoidant PD When an individual meets criteria for avoidant PD (e.g., avoiding interpersonal contact or intimate relationships, preoccupation with criticism or rejection, viewing self as socially inept, etc.), it is essential

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for the clinician to consider whether these symptoms developed over time in response to underlying social, communication, flexibility, and/​or sensory challenges. Autistics, particularly those who are undiagnosed or misunderstood, are at high risk for developing these behaviors after years of social and sensory trauma, and underlying autism can therefore sometimes explain the symptoms of avoidant PD, rendering the diagnosis of avoidant PD unnecessary and inappropriate. Dependent PD Similarly, autistic individuals are at risk for developing behavioral characteristics similar to those observed in dependent PD, such as needing unusual levels of assistance from others or having difficulty initiating activity on their own. In my experience, this can occur for multiple reasons. For instance, some autistics have severe difficulty coping with change. Or they may need tremendous reassurance and clarification, due to context blindness, or they may avoid driving, as a result of sensory overload. Difficulty with executive functioning (especially initiation and shifting) can also make it challenging for an autistic person to do things –​sometimes things they really want to do –​without external assistance. This means that adaptive behavior (i.e., daily living skills) can be lower for autistic people than their intellectual functioning; this discrepancy can lead to unexpected dependence. These are just a few examples of the countless ways in which autistics’ challenges can create dependent behaviors. As noted above, the DSM-​5-​TR explicitly states that “the enduring pattern is not better explained as a manifestation or consequence of another mental disorder,” and in these cases, a PD diagnosis would not be appropriate (or helpful). Obsessive-​c ompulsive PD (OCPD) There is a fair amount of potential overlap between autism and OCPD, such as a preoccupation with orderliness and perfectionism at the expense of flexibility or task completion, a preoccupation with rules or lists, an unusual degree of concern regarding morality or ethics, inability to discard worthless objects, the need for others to do things in particular ways, and/​or general difficulty with flexibility. Though I have not found research to support this, it is my suspicion that, historically,

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many people who were diagnosed with OCPD were in fact undiagnosed autistics. I agree with Meng-​Chuan Lai and Simon Baron-​Cohen’s recommendation “to consider first whether an individual has an underlying autism spectrum condition before diagnosing obsessive-​compulsive personality disorder.” In summary Clinicians should consider the possibility of previously undiagnosed autism before diagnosing PD, particularly if: • The individual meets criteria for autism. • The individual displays characteristics that are commonly seen in autistics, such as a tendency toward persistent anxiety, shutdown/​ burnout, somatic issues, alexithymia, poor executive functioning, context blindness, motor issues, questions related to gender identity, etc. • There is no history of significant abuse or neglect (excluding social trauma). • There is possible family history of autism (which is likely undiagnosed but can be gleaned from personality descriptions of family members). • The individual has researched autism and feels that it explains their experience. Clinicians should ensure that autism does not better explain the traits and behaviors attributed to a possible PD. As Tove Lugnegård and his colleagues asserted: “Most importantly, it is crucial to look for [autism] in adult patients with PD diagnoses or with marked personality traits within cluster A or C. Clinical awareness, a careful developmental history, and genuine knowledge about [autism] are the key clues. For the individual patient, a ‘redefinition’ from PD to [autism] will often provide a basis for a better understanding of the core problems faced by the individual.” Remember, many adults with undiagnosed autism may present as personality disordered. Do not rule out or fail to consider autism simply because no one has diagnosed it before.

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From the experts: Reflections on PD diagnoses

“I was diagnosed with BPD but it turns out I was just allowing myself to become overstimulated and didn’t know what that was until I realized I was autistic. Almost all the traits that got me diagnosed with BPD are gone now that I know to avoid my sensory triggers.” –​Andi F.



“I was diagnosed with many things in my 20s, including BPD. I was put on all kinds of antidepressants and antipsychotics. It wasn’t until I was in my late 30s and a female friend was diagnosed autistic that I started reading how it presents differently in women. I finally got my diagnosis at 39, I’m unmedicated and probably the most stable I’ve ever been. Looking back, it’s really obvious I was autistic but nobody thought to suggest it.” –​Kayleigh R.



“Being misdiagnosed with a personality disorder left me feeling very misunderstood, discouraged, and was overall invalidating to my lifelong struggles of [what I now know as] being autistic. I started to lose not only hope in finding help that actually worked for me, but also trust in my concept and knowing of self.” –​Reanna P.

ADHD Autism and attention deficit hyperactivity disorder (ADHD) frequently co-​occur. While there is overlap between ADHD and autism, this particular differential leads to some missed autism diagnoses, because (a) many people, including clinicians, overestimate the overlap between the two (i.e., they believe them to be far more similar than they actually are); and (b) many clinicians are more comfortable with the ADHD diagnosis and are therefore more likely to diagnose ADHD than autism. Subsequently, there may be diagnostic overshadowing, with the individual’s autistic traits being attributed to their ADHD. That is, in my clinical experience, when an individual has an ADHD diagnosis, their autistic traits and behaviors are often attributed to their ADHD. Those involved all feel that they have an explanation for the presentation; thus no one even considers the possibility of autism. Consistent with this observation, Vasiliki Kentrou and colleagues found that, if a child had an ADHD diagnosis, it actually postponed their autism diagnosis by about 1.5 years in boys and about 2.6 years in girls, compared to autistic children without a prior diagnosis of ADHD!

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This was likely exacerbated by the DSM-​IV, which forced clinicians to choose between diagnosing ADHD and autism; thankfully, the DSM-​5-​ TR allows us to diagnose both when appropriate. Overall, I agree with the expert consensus by Susan Young and her colleagues that “both conditions should be considered when one of the conditions is present.” Overlap Both ADHDers and autistics can have the following: Delayed motor or language development; difficulty with self-​regulation, attention, flexibility, and other aspects of executive functioning; sensory differences; difficulty in social interactions with peers; a better ability to sustain attention for topics or activities of interest; and a higher prevalence of co-occurring disorders, such as anxiety and depression. Differences The nature of social difficulties. In ADHD, social challenges are due less to a lack of social understanding and more to difficulty with s­ elf-­regulation. While ADHDers may have challenges, such as responding to other people’s nonverbal cues, interrupting, over-talking, or having trouble maintaining personal space, these are secondary to their ADHD symptoms, not a core difference in social understanding. As noted by researchers Kevin Antshel and Natalie Russo (among others), ADHDers know what to do but don’t do what they know, while autistics don’t necessarily intuitively, automatically know what to do. That is, autistics are more likely to have a difference in knowledge or understanding, while ADHDers are more likely to have a problem consistently applying their knowledge of social interactions, particularly when they are not paying attention. The same authors also point out that the social difficulties of autistics “appear more due to the absence of positive behaviors (e.g., social approach, eye contact) rather than the presence of negative behaviors,” while the social difficulties of ADHDers “are more likely due to the presence of negative behaviors such as interrupting and intruding on conversations….” Additionally, non-autistic individuals with ADHD do not tend to have core difficulty integrating nonverbal social communication (e.g., use of gesture, eye contact, body language, facial expressions), and they also are not at high risk of having unusually low social motivation, social energy, or interpersonal curiosity. Moreover, some

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researchers, such as Danielle Baribeau and her colleagues, have found that hyperactivity, but not inattention, has a negative effect on social cognition scores. The type of movement. ADHDers with hyperactivity may engage in a generally high level of movement, even when not appropriate to the situation. However, any movement will do to meet their need, as opposed to the repetitive and/or idiosyncratic nature of an autistic person engaging in stimming. ADHDers demonstrate generally excessive movement with no particular pattern, while autistics demonstrate specific repetitive movements. As noted above, an individual can have both ADHD and autism and thus show both types of movement. The range of difficulty with change and transitions. Individuals in either of these groups can have difficulty with transitions. However, for ADHDers, this most frequently manifests as difficulty shifting away from a high interest activity toward an activity that is perceived as challenging or boring. They may also struggle with the executive functioning required to cope with change, but they do not tend to have a primary emotional reaction to the change itself. In contrast, many autistic individuals have much broader difficulty with novelty, change, or transitions in general. Additionally, some ADHDers seek and even require novelty, which is not expected in most autistic individuals, who tend to have a strong need for sameness. Sensory differences. Both ADHDers and autistics are vulnerable to sensory hyper-responsivity. However, I have not observed nor read about ADHDers being highly vulnerable to hypo-responsivity (e.g., being less responsive to either internal or external sensations. Additionally, while some ADHDers may be sensation (thrill) seeking, they do not often experience atypical sensory craving behaviors (e.g., licking/smelling objects). Presence or absence of RRBs. As the DSM notes, “… The developmental course and absence of restricted, repetitive behaviors and unusual interests in ADHD help in differentiating the two conditions.” While ADHDers have an interest-based nervous system that makes it harder for them to focus on things they are not interested in, they don’t have restricted or atypical interests, play in an unusual manner, hyperfocus on details that others don’t think are important, or have repetitive behaviors (although as noted above they do fidget and can have general motor restlessness).

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Anxiety disorders Anxiety disorders can be a direct result of underlying autism. Being autistic in a world that is not designed for you will make you anxious. People get mad at you for reasons that are not under your control or sometimes even in your awareness. They think you are rude because you have trouble navigating non-autistic social norms. They judge you negatively because they are uncomfortable with how you self-regulate, and they get mad at you when you can no longer cope because they won’t let you self-regulate. They can’t understand why you misunderstand them, or why you need explicit communication. Sensory challenges are everywhere. The list is endless There are also some ways in which anxiety can be atypical in autistic individuals. For example, autistic individuals are vulnerable to anxiety about typical triggers, such as being judged by others, getting poor grades, illness, etc., but they also may experience anxiety about atypical things, such as unexpected change, anticipated sensory overwhelm, making eye contact, or turning 18. Some autistic individuals may not experience anxiety the way non-autistics do (because of altered interoception), talk about anxiety in the ways that non-autistics do (because of alexithymia), or show anxiety in non-autistic ways (because of restricted or flat affect). This can make it challenging to diagnose and treat their anxiety. Finally, as my colleague Jonathan Dalton has pointed out, some autistics report anxiety when in fact what they are feeling is overstimulation or overwhelm. He explains that worry is language-based, future-oriented, specific, and less impairing, while overwhelm is feeling-based, presentfocused, global, and can be quite impairing. Autistics may experience cognitive overload (likely related to a bottom-up style of processing information), sensory overload, or social overload. It is essential to discern if an individual is experiencing adaptive anxiety, an anxiety disorder (false alarms), or overwhelm, as this will guide appropriate intervention. This section reviews two anxiety disorders, selected because there are many people diagnosed with these particular disorders when autism would provide a more complete framework for understanding their experience and behaviors.

Social anxiety disorder (SAD) The differentiation of autism and SAD is particularly challenging. Anxiety related to feeling negatively evaluated by others can have

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significant behavioral overlaps with autism, including difficulty reading social cues, difficulty connecting with others and forming friendships, challenges with eye contact, and possible social withdrawal. When considering a SAD diagnosis, the DSM-​5-​TR states that “the fear, anxiety or avoidance is not better explained by the symptoms of another mental disorder, such as […] autism spectrum disorder.” This suggests that autism should be considered before SAD is diagnosed. That being said, research, clinical experience, and common sense tell us that, of course, autistic individuals can and often do have significant social anxiety. Indeed, living with the challenges of autism very frequently leads to some measure of social anxiety. As noted by Susanne Duvall and her colleagues, clinicians must look beyond the behavioral symptoms to the source and pattern of the behavior. The underlying challenges in autism include difficulty intuitively understanding and managing typical social interactions, as well as sensory and flexibility challenges, while the core underlying issue in SAD is anxiety. People with SAD generally don’t experience significant social anxiety when they are with close family and friends, and at these times their interactions (and underlying experience) are socially typical. While autistics are also typically more relaxed around trusted individuals, they still likely have atypical interactions with them. If a child has atypical interactions even with their parents, siblings, and close friends, autism is more likely than social anxiety. Similarly, while people with SAD tend to struggle with public speaking (such as acting), autistics often are more comfortable in these situations than when chatting socially, because public speaking demands less reciprocal communication than unscripted interactions. Additionally, people with SAD are vulnerable to misreading social cues, specifically due to hostility bias and hypervigilance, whereas autistic people have more broad-based reasons for misreading social cues. Likewise, people with SAD often find eye contact uncomfortable, while autistic people may make a conscious effort to use eye contact, even though they find it uncomfortable, not to mention confusing and/or distracting. The developmental trajectory – determining which came first, the anxiety or the social difficulty – can help you determine whether the person has SAD or is autistic. It can also be helpful to consider whether there are autistic repetitive behaviors, sensory differences, intense or atypical interests, or a significant pattern of inflexibility, as these would

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be indicators of autism but not of SAD. Other indicators of autism that are not necessarily expected in SAD include difficulty maintaining friendships, frequent conflict, or low social motivation. As always, the individual’s subjective experience is crucial to understanding. Ricky, a striking and fashionable 25-​ year-​ old med school student, recently went to dinner with a friend. As they perused their menus, the waitress came over and asked if they wanted to order drinks. Ricky’s friend, Bridget, ordered a drink, while Ricky continued to silently study her menu. After an awkward moment (of which Ricky was unaware), Bridget told her, “the waitress is waiting for your drink order.” Ricky was embarrassed. She later told us, “I just assumed that if I said nothing, she would know that I didn’t want a drink.” When asked about anxiety, Ricky stated, “No, I wasn’t anxious. I just didn’t know that I was supposed to say something at that moment.” Ricky was (mis)diagnosed with social anxiety disorder years before she was diagnosed with autism.

Selective mutism (SM) The DSM-​5-​TR states that the symptoms of SM “do not occur exclusively during the course of autism spectrum disorder…,” which forces the clinician to choose between these two diagnoses. However, my clinical experience suggests that they can frequently co-​occur and that autism should be considered when someone presents with SM. In fact, several recent studies suggest that SM and autism are distinct disorders that can frequently co-​occur. For instance, Hanna Steffenburg and her colleagues found that 62.9% of children with SM could also be diagnosed with autism, and Evelyn Klein and her colleagues found that 80% of children with SM demonstrated strong enough traits of autism to warrant further assessment. There seems to be a strong genetic link between SM and autism, and some researchers, such as Peter Muris and Thomas Ollendick as well as Murray Stein and his colleagues, point out that autism may be as strong a contributor to SM as anxiety. Additionally, some people use the phrase “situational mutism,” which seems to refer to brief, passing episodes of mutism in autistics (whereas selective mutism must occur for at least one month for diagnosis). Overall, whenever working with a client who has SM or a history

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of SM, the possibility of autism should be considered. When considering this differential, the DSM-​5-​TR diagnostic criteria for SM states that, “Even in settings where the child is mute, social reciprocity is not impaired, nor are restricted or repetitive patterns of behavior present.” Thus, impaired social reciprocity and/​or the presence of RRBs should trigger a clinician to consider autism in a client with SM.

Obsessive-​c ompulsive disorder (OCD) It can be very challenging to differentiate between OCD and autism. Individuals in both groups tend to engage in repetitive behaviors and to experience obsessive thinking, “not just right” sensations, intolerance of uncertainty, and sensory hyper-​responsivity. There seems to be overlap in the genetic underpinnings and neurocircuitry involved in autism and OCD, and the two conditions frequently co-​occur. While the behaviors observed in OCD and autism overlap, the function and emotional experience underlying those behaviors are distinct. The function of compulsions occurring in the context of OCD is to reduce distress/​anxiety. These behaviors are attempts to get rid of fear or anxiety or to prevent a feared outcome. The repetitive behaviors associated with autism sometimes serve to reduce distress or anxiety, but they are not specifically linked to the same feared outcome over time. More importantly, autistic repetitive behaviors can also be self-​soothing, assist with general emotional or sensory regulation, and be enjoyable. Similarly, obsessive thoughts and preoccupation with intense interests can resemble one another, but the underlying emotional experience is different. Obsessive thoughts are unwanted and distressing, leading to a compulsive behavior that serves to neutralize the unwanted thought or urge. People with obsessive thoughts often avoid thinking or talking about them; when they do think or talk about them, it is with fear or anxiety, not pleasure. In contrast, preoccupation with an intense interest is typically enjoyable or relaxing for the autistic individual, and they often seek to think, talk, research, or otherwise engage with the interest purely for pleasure (though it may bother those around them, or bother the individual when others do not share the intensity of their interest). Clinicians need to keep the high level of co-​occurrence between autism and OCD in mind, and to consider the following questions:

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• Are the thoughts or behaviors in question ego-​syntonic or ego-​dystonic? Are they comfortable and soothing, or are they a source of distress that the client would like to be rid of ? Be careful to separate the client’s goals from a family member’s goal (e.g., if a parent would like the repetitive behavior to stop, clients may internalize that goal simply to please or appease the parent). “Stimming” itself never causes distress (it is ego-​syntonic), though the individual may be stressed by other people asking or forcing them to stop stimming. In contrast, compulsive behaviors often feel like a “necessary evil” to the individual. • What is the function of the behavior? In the context of OCD, there will often be a direct relationship between obsessions and compulsions, as compulsions are a way of coping with and reducing obsessive thoughts (even if the thought is a general sense of “not feeling right”). In contrast, autistic repetitive behaviors are not typically tied to any particular thought. • What range of repetitive behaviors is available to the individual? Individuals with OCD cannot easily substitute a new ritual; they must engage in a specific compulsion (or avoidance behavior) in order to lower their distress. While autistics often have preferred repetitive behaviors, they generally have several to choose from and can often substitute one type of stimming for another. • If there are social challenges, are they driven by the symptoms in question? Individuals with OCD can have social challenges as a result of their OCD symptoms, for example, avoiding interactions due to fears of contamination. Autistic behavior, on the other hand, is generally not driven by specific obsessive thoughts or the desire to hide compulsive behaviors.

Oppositional defiant disorder (ODD) The DSM-​5-​TR description of ODD consists of a list of negative behaviors (i.e., often loses temper, is often angry or irritable, often argues, is defiant, deliberately annoys others, has been vindictive, etc.). Causes could include environmental factors, such as trauma or abusive/​ neglectful parenting, or neurologic factors, such as autism, ADHD, or

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fetal alcohol spectrum disorder (FASD). The DSM goes on to state that the clinician should rule out significant mood disorders and substance use, but it does not require or even suggest a rule-​out of autism. I feel strongly that clinicians should consider the possibility of autism before diagnosing any child with ODD, especially when the clinical picture does not consist solely of defiant behavior but also includes concerns such as developmental delays, motor or sensory issues (past or present), social/​communication challenges, language issues (past or present), academic challenges, etc. If a client meets criteria for autism, it is likely that the autism provides an explanation for the “ODD behaviors,” and thus the diagnosis of ODD is likely not useful, even if those criteria are met. To differentiate, it is essential to determine the child’s understanding of social situations and expectations. There is a significant difference between a child who is fully aware of social conventions and chooses to ignore or defy them, versus a child who does not understand the expectations. Along with this, it is essential to understand the reasons for the behaviors. For instance, if the child is frequently irritable or often loses their temper, is it because of social overwhelm, sensory overwhelm, or novelty/change that feels intolerable to them? If the child is often angry or resentful, is it because of an unusually strong moral code, e.g., responding to a parent or teacher whom they feel metes out justice inconsistently Does the child refuse to comply with demands for the primary reason of defying authority, or do they have difficulty understanding the expectations, possibly because of misinterpretations or difficulty using context to understand the request? For example, some autistics interpret language very literally. If a parent says, “Empty the dishwasher,” the child may take each item out of the dishwasher and place them on the counter, rather than actually putting them in drawers or cabinets. With an autistic child, this is not purposefully disobeying the adult but is an example of misunderstanding the intent of the command. It is also helpful to look at the child’s patterns of disrespectful or disruptive behavior. For example, an autistic child may be well-behaved in classes where they have a good relationship with their teachers but refuse to work in a class where they perceive a teacher to be mean or unfair. They may also shut down in response to certain activities, such as writing. They may behave in ways that are off-putting to others because they do not perceive the others’ negative reactions, e.g., playing too roughly when the other children have stopped enjoying the game. If

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there are patterns such as these, it is essential to consider the possibility of autism. Finally, autistic people can inadvertently make disrespectful or hurtful comments, but in my experience, it is rare for autistic people to intentionally manipulate others. Additionally, a child who meets criteria for ODD could have a theorized subtype of autism known as pathological demand avoidance (PDA). As discussed in the companion book to this one, I prefer to refer to PDA as a pervasive drive for autonomy. PDAers very frequently engage in highly disrespectful, disobedient, and disruptive behaviors, but they do so for the sole purpose of retaining or regaining a sense of autonomy. This is not a need for control, as PDAers do not feel a need to be in control of other people, only to avoid other people being in control of them. At its core, PDA is an anxiety disorder, in that the perceived loss of autonomy causes an instant and extreme fight or flight response. One way to differentiate PDA from ODD is that the PDAer’s reaction even overrides their basic survival instincts, such as eating, sleeping, safety, using the bathroom, etc. This is not expected in ODD. Another way to distinguish them is to observe the child’s response when an adult expects them to engage in a preferred activity. A child with ODD would not be expected to have a negative reaction to this, but a PDAer would have difficulty complying, even when they themselves want to engage in the activity. Overall, whenever a child potentially meets criteria for ODD, it is essential to consider autism (with or without a PDA profile) and to explore the reasons for, functions of, and patterns in their behavior.

Connecting culture There is bias inherent in the diagnostic process, particularly for behavioral disorders. Multiple studies have found that children from racial or ethnic minority groups are more likely to be diagnosed with behavioral disorders, such as ODD, while other (likely more accurate and/​or helpful) diagnoses are overlooked. Dr. S. agrees with this, stating, “Some clinicians have a higher bias in diagnosing children of color with behavioral disorders. They don’t see the challenges as being brain-​based. Rather, they see it as oppositional behavior or as willful destructive behavior.” Such biases can have far-​reaching implications. For example, autistic males of color who present with emotional dysregulation and/​ or atypical or off-​putting social behavior are extremely vulnerable to

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being misunderstood. They may then be misdiagnosed, improperly medicated, and/​or imprisoned, due to the original misunderstanding of their behavior. Black males have been particularly subject to such discrimination, and there are potentially lifelong and severe consequences to this. Parents of minority males are understandably very sensitive to this risk, and their fears about the safety of their child need to be taken very seriously. Clinicians must carefully consider this when interpreting the observable behaviors of clients of color. This is consistent with the experience of Dr. P., a Black forensic psychologist. She reports, “There are so many race-​related biases around the likelihood of being charged with a crime. I frequently work with clients who have clearly been misdiagnosed. However, once someone has committed a crime, it sounds disingenuous to make or change a diagnosis, because it looks like the change is being made solely to support the client’s defense.”

Bipolar disorder According to the DSM, bipolar disorder is marked by the presence/​ history of a true manic or hypomanic episode, which must last for at least four days for hypomania, and seven days for mania, with a pattern of associated symptoms, such as grandiosity, decreased need for sleep, pressured speech, flight of ideas, or risk-​taking activities. While autistic individuals may experience dysregulation of their energy, activity level, and emotions, they will not have the symptoms of mania or hypomania continuously for several days in a way that is distinctly different from their baseline functioning (unless they also have bipolar). This can be tricky, because, when engaged in an intense interest, autistics may have more energy, become more talkative, and/​or exhibit a change in mood. This may then be followed by a period of autistic burnout. Together, these can mimic a cycle of (hypo)mania followed by depression. Clinicians must take care to differentiate between the “normal” fluctuations of autism and a true manic or hypomanic state. Additionally, in non-​bipolar autistics, risky behavior does not increase, unless it is directly related to the pursuit of an intense interest (e.g., someone in a manic state may spend an excessive amount of money in general, while an autistic person may spend money specifically in relation to an intense interest). It is also essential to identify patterns over time, as the DSM is clear that manic or hypomanic episodes must be “distinct episodes” that represent

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“an unequivocal change in functioning that is uncharacteristic of the individual when not symptomatic.” For example, I have encountered several autistic people who speak very rapidly and at great length and were diagnosed with bipolar largely because of this. However, they each have maintained this speaking style persistently over many years, rather than doing this during “distinct episodes,” and they did not have any accompanying symptoms of (hypo)mania. Separately, the presentation of bipolar disorder in children has been a topic of debate; not so much whether it exists, but to what extent and in what form. There is specific controversy around children with chronic irritability that is not clearly episodic, and one’s view on this matter will, of course, greatly affect their differential diagnosis. My approach to bipolar disorder is the same as my approach to autism; I adhere to the DSM criteria, which specify an episodic presentation with groups of symptoms that wax and wane together. Overall, consider bipolar if there is a clearly episodic nature to mood fluctuations (distinct from baseline), along with a pattern of associated decreased need for sleep, hypersexuality, psychosis, and/​ or distinct periods of increased energy (even if this is seen as positive by others because the individual is being unusually productive). There must be a pattern of symptoms that come and go together. It can be helpful to use the GRAPES acronym to remember some of these symptoms: Grandiosity, Racing thoughts, changes in Activity, Pressured speech, Elated mood, and decreased need for Sleep. Regarding sleep, it is essential to differentiate difficulty sleeping (falling asleep, staying asleep, and/​or getting restful sleep) from a decreased need for sleep. While many people experience difficulty sleeping for a wide variety of reasons, that is typically accompanied by daytime sleepiness as well as the client complaining that they want to sleep but cannot. In contrast, manic or hypomanic individuals are able to maintain a high level of energy on a low amount of sleep (for multiple days). Consider autism in this differential (when the individual meets criteria for autism) and when mood fluctuations are linked to specific triggers, particularly when those triggers are common for autism (change, sensory, and social), and also when mood fluctuations respond to supports (e.g., if someone is in sensory overwhelm and is allowed to be in a quiet environment). Other indicators that an individual is autistic

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rather than bipolar include: they are consistently fine in one environment but consistently challenged in another (e.g., they camouflage all day at school and melt down at home in a way that is both chronic and predictable), or when they have clear repetitive behaviors/​stimming, sensory differences that are consistent over time, intense or atypical interests, and/​or inflexibility that is consistent over time. Non-​autistic bipolar individuals are not expected to meet these RRB criteria for autism. It is also essential to consider what is typical for that individual’s mood and behavior, i.e., what does that person’s baseline really look like. For example, some autistic children may have persistently cheerful affect or persistently rapid speech, so these would have to be noticeably different for distinct periods in order for them to be considered as possible signs of (hypo)mania. Additionally, it may be necessary to track the person’s mood and behavior over a long period of time, as some people with bipolar may have seasonal variations. It is relevant to consider family history, looking for both bipolar disorder and autism. Finally, keep in mind that an individual can be autistic and also have bipolar; it is not necessarily either/​or. From the experts: Reflections on a bipolar (mis)diagnosis

“I was misdiagnosed with bipolar disorder at age 18. I was put on lithium, antipsychotics, antidepressants, other mood stabilizers, plus a litany of drugs to deal with the side effects of all that. [Then], a psychologist suggested I was simply autistic. It changed my life. I’m now medicated appropriately [for ADHD and depression]. I am no longer semi-​homeless; I have a six-​figure job, I’ve been in a relationship for six years, and we own a house. I’m 27 now and can very confidently say I’d be dead without this knowledge of myself and how I fit into the world.” –​Chloe H.



“I’ve previously been diagnosed with bipolar 2. My guess is that the cycle of excitement > overexertion > extended burnout gets misinterpreted as mania and depression. I think my ‘hypomanic’ moments were really just hyperfocus and deep excitement for my interests because I never really got those ‘I’m the king of the world, I don’t need to sleep, I’m gonna do something reckless’ feelings.” –​O. S.

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Depression Areas of overlap between depression and autism can include flat or restricted affect, a tendency to be withdrawn from others, reduced eye contact, rumination, difficulty with attention, difficulty with task initiation or follow-through, and difficulty with eating and/or sleeping. To differentiate, consider whether the presentation represents a significant change or has been persistent throughout the client’s life. Note, ­however, that some autistic people experience a change in presentation/ functioning late in elementary school or early in middle school (as discussed in our prior book). Differentiation also relies on the nature of the challenges. Many autistic people have difficulty with eating or sleeping from an early age, whereas with depression there is typically a change in these behaviors. With eating, limited intake can be due to low appetite in either group, but in depressed people there is awareness of “I’m just not hungry anymore,” whereas in autistics this may be part of a larger and longstanding pattern of low interoceptive awareness, and there are also likely to be sensory hyper-responsivities to the taste, smell, or texture of food. Finally, individuals in either group may have difficulty sustaining attention. With depressed individuals, this inattention is usually due to their ruminating on negative thoughts or simply feeling “blank.” Autistic people are similarly vulnerable to inattention due to rumination, but they also are often distracted by internal thoughts that can be neutral or positive and simply are of greater interest than the external stimuli. It is also important to note that people can be both autistic and depressed. Still, some autistics can look depressed when they are not, particularly if they maintain a neutral facial expression, have little variation in their vocal intonation, are under- responsive to their environment, and/ or have little interest in most topics or activities. In these cases, a clinician cannot assume depression based on the individual’s flat presentation. This is further complicated by the presence of alexithymia; if autistics are unable to describe their emotional experience, family and clinicians tend to place greater emphasis on that individual’s nonverbal presentation. Finally, autistic burnout, as discussed in the companion book to this one, Is This Autism? A Guide for Clinicians and Everyone Else, can coincide

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with or mimic depression. Autistic people who are not depressed will not have significant symptoms of low mood, such as feeling persistently sad, empty, worthless, or hopeless, having a sudden unexplained change in weight, or experiencing a loss of enjoyment of their high interest activities (anhedonia). These symptoms of depression are not part of autism unless the autistic person is also depressed.

Disruptive mood dysregulation disorder (DMDD) DMDD, which can only be diagnosed between ages 6 and 18, has two core features. First, there are severe, recurrent outbursts that are out of proportion to the child’s developmental stage and to situations. To meet the DMDD criteria, these outbursts must occur three or more times per week, for at least a year, in at least two of three settings. There can be some overlap here, as many autistic children and adolescents have frequent meltdowns/​outbursts. It is essential to determine whether the patterns of these events can be attributed to certain autism-​related triggers, such as sensory overload or coping with change. The other key characteristic of DMDD is often a more straightforward way to differentiate it from autism. This is a “chronic, severe persistent irritability… present most of the day, nearly every day.” To explore this possibility, ask the parents about the child’s typical mood and how often they are irritable. Ask the client and/​or parents, “What is his/​her/​their mood like when everything is going their way? If they could wake up on a Saturday and do anything they wanted all weekend long?” If under those conditions the client is in a neutral to positive mood, then they likely do not have the baseline irritability that is a core feature of DMDD and thus do not have DMDD. The DSM also notes that both the outbursts and the irritability must be “present in at least two of three settings (i.e., at home, at school, with peers) and are severe in at least one of these.” Many autistics who camouflage can be highly irritable at home but do not show irritability at school or work. A presentation of frequent irritability at home but no irritability at work or school is more suggestive of autism than of DMDD. It is also very important to note that, for DMDD, the DSM-​5-​TR specifies that the symptoms are “not better explained by another mental

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disorder,” and autism spectrum disorder is specifically mentioned. As such, autism should be ruled out before considering a diagnosis of DMDD.

Eating disorders An entire book could be written on the complex relationship between autism and eating atypicalities/​disorders. For the purpose of this chapter, I would like to highlight the growing evidence that people with eating disorders often have autistic traits and at times unrecognized autism. For example, Will Mandy and Kate Tchanturia have found that women with eating disorders who struggle with flexibility and social challenges are more likely than not to have undiagnosed autism. Similarly, Elisabet Wentz and her colleagues found that about 23% of eating-​disordered patients were (often unknowingly) autistic. The high incidence of (often undiagnosed) autism is particularly well established for people with anorexia nervosa (AN). For example, a systematic review by Vanessa Huke and her colleagues found autism prevalence in AN ranging from 8% to 37%, with an average prevalence of 22.9% (compared to roughly 2.27% in the general population). Similarly, Takeshi Inoue and his colleagues found that autism prevalence was 16.3% in AN. People being treated for anorexia nervosa (AN) are 7–​10 times more likely to be autistic than people who are not being treated for an eating disorder. Studies have also found that autism is 2–​6 times more likely in clients with avoidant and restrictive food intake disorder (ARFID) than in clients without ARFID. For example, Takeshi Inoue and his colleagues found that autism prevalence was 12.5% in an ARFID population (compared to about 2.27% in the general population). Still, my clinical experience suggests an even higher incidence of autism in clients who have ARFID. When a client has (or had) ARFID, the possibility of autism should be considered. There are many autistic traits and behaviors that can lead to limited food intake (without any underlying fear of being overweight). These can include low interoceptive awareness (i.e., not feeling hungry), anxiety related to the social aspects of eating, sensory sensitivities to taste, smell, and/​or texture, executive function challenges when meals need to be planned, inflexibility to try novel foods, rigid beliefs about eating, and likely others.

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Again, clinicians must try to understand the emotions, experiences, and beliefs that underlie restrictive eating behavior, rather than simply noting the behavior itself. When working with eating-​ disordered clients, it is essential to consider the possibility of co-​ occurring autism.

Trauma As mentioned in the companion book to this one, much of the literature on the complicated relationship between trauma and autism focuses on the prevalence and symptoms of trauma in the autistic population. There has been little focus on clarifying the overlap and ways to differentiate between the two. Following are some general themes about the overlap and differences. Overlap Difficulty in social interactions and relationships. Individuals in either group may exhibit social withdrawal, restricted/​ flat affect, and/​ or difficulty with social/​emotional reciprocity, reading social cues, deepening relationships, managing conflict, sharing personal information, intuitively understanding other people’s intentions, and use of eye contact. Emotional challenges. Both groups are vulnerable to anxiety, depression, rumination, self-​harm, shifting mood, avoiding sources of trauma, and difficulty regulating emotions. Notably, individuals in each group often experience the world around them as unsafe or overwhelming and may feel like they are in danger when there is no objective threat to their well-​being. Other areas of overlap. These may include difficulty regulating arousal and reactivity, difficulty with attention and executive functioning, altered interoceptive awareness, difficulty with self-​ advocacy, sleep disturbance, context insensitivity, and difficulty with flexibility –​ including black-​and-​white thinking, perfectionism, and need for routine and predictability. Individuals in either group are also vulnerable to having medical symptoms, such as irritable bowel syndrome (IBS) or dysautonomia, and they may have multiple psychiatric diagnoses (accurate or inaccurate).

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Differences The experience of social interactions. Autistics are more likely to experience confusion about or disagreement with social norms, awkward interactions, or difficulty integrating social communication skills. In contrast, non-autistic traumatized individuals may be hesitant to engage, but when they feel safe and secure, they generally do not have difficulty understanding and engaging in typical social interactions. The nature of eye contact. For non-​autistic traumatized individuals, eye contact makes intuitive sense but can be uncomfortable at times. For autistics, eye contact is likely to be more persistently uncomfortable and also may be effortful and/​or confusing. The nature of sensory challenges. Individuals in either group can experience sensory over-​and under-​ responsivities, altered interoceptive awareness, and vulnerability to sensory overwhelm. In contrast, sensory craving as well as differences in proprioception or vestibular functioning are often seen in autistics, and I have not noticed or read about these particular differences in non-​autistic trauma survivors. The focus of black-​and-​white thinking. In non-​autistic traumatized individuals, black-​and-​white thinking is most likely to be experienced in regard to the self and particular triggers related to the trauma (e.g., certain people or activities), while autistics are vulnerable to have black-​and-​ white thinking about a wider variety of people, topics, and activities. Repetitive play themes. While children in both groups can have repetitive play, in trauma this is typically limited to themes of the trauma itself or more generally to themes of danger/rescue. In autism, repetitive play is more likely to relate to intense interests or more generally to a desire for sameness. If there is repetitive play or use of objects that is unrelated to themes of danger or prior trauma, that is more likely to be autism. Other repetitive behavior. Individuals in either group may engage in repetitive behavior, but non-​autistic trauma survivors are more apt to engage in repetitive behaviors that relate solely to hypervigilance and safety needs, e.g., soothing rituals or self-​harm behaviors. Autistics, on the other hand, also engage in repetitive behaviors for other reasons, such as expressing excitement, coping with boredom, communicating, or helping with focus. The nature of sleep difficulty. Both groups can have difficulty falling or staying asleep, but flashbacks, nightmares, and intrusive memories are all indicative of trauma.

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Special interests and language differences. These would not be expected in non-​autistic trauma survivors. In summary Autism and trauma frequently coexist. Clinicians need to take particular care to look for signs of trauma in autistics and for autism in people who have experienced trauma. When considering this differential, if there is no evidence or strong suspicion of trauma, consider the possibility of autism. This seems obvious, but I have encountered many individuals with no known trauma history whose therapists nevertheless theorized that they had experienced trauma that no one recalled. While this is possible, it is also possible that there is no trauma history and that the symptoms are because they are autistic. Clues can be found in the individual’s developmental and family history. Take care to explore the developmental timeline, ideally by interviewing parents or other adults and/​or reviewing early documentation, if possible. Understanding the family history can also provide clues, e.g., if there are one or more relatives who are described as having autistic traits. A history of trauma should not stop you from considering a diagnosis of autism. Even if there is a history of developmental trauma, if the individual meets all diagnostic criteria for autism, the data supports a diagnosis of autism, there is a history consistent with autism (even if only by self-​ report), and it is validating/​makes sense to the individual, then diagnose autism. Do not fail to consider or diagnose autism simply because there is also a history of trauma (which would constitute diagnostic overshadowing).

Reactive attachment disorder (RAD) Symptom overlap has been noted between RAD and autism, e.g., potentially not seeking or responding to a caregiver’s attempts to comfort or console, not showing typical levels of social or emotional responsiveness, or showing a limited range of emotions when interacting with others. Clinicians should not consider a diagnosis of RAD if there is no history of neglect or other significant lack of opportunity for attachment, as the attachment issues in RAD are directly related to that lack

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of opportunity. In particular, the DSM-​5-​TR states that, to diagnose RAD, the individual must have experienced “social neglect or deprivation,” or “repeated changes to primary caregivers,” or “rearing in unusual settings that severely limit opportunities to form selective attachments.” I have actually seen some clinicians consider or diagnose RAD without this type of history. If there is no history of trauma or neglect, autistic children do not have difficulty forming attachments to their parents and other close family and friends. What can be different in autism is the way in which some autistic children express (or don’t express) their attachment to their loved ones, e.g., avoiding or not seeking hugs. Another distinction is the lack of RRBs in RAD. Moreover, the DSM-​5-​TR specifies that, for a diagnosis of RAD, the individual cannot meet criteria for autism spectrum disorder. This implies that autism should first be considered, and that RAD should only be diagnosed if autism has been ruled out. While I agree with Susan Dickerson Mayes and her colleagues, who posit that RAD and autism can co-​exist (as one is neurologically based and the other is due to environment), overall it is important to remember that RAD is a relatively rare and somewhat controversial disorder. Finally, RAD and autism are fundamentally different at their core: RAD is a disorder caused by insufficient care, while autism, not considered to be a disorder by all, is a result of neurological differences.

Psychosis Psychosis is not a diagnosis itself but a symptom of many diagnoses, e.g., schizophrenia, delusional disorder, brief psychotic disorder, schizophreniform disorder, and schizoaffective disorder. Healthy individuals can also experience psychotic episodes at times. Psychosis refers to a loss of contact with reality with positive and/​or negative symptoms. Positive symptoms are unusual things that start happening, such as paranoia, delusions (false beliefs), hallucinations (false perceptual or sensory experiences), or grossly disorganized thinking, speech, or behavior. Negative symptoms refer to usual things that stop happening, such as flat affect (not showing the usual signs of emotion), withdrawal, poor hygiene, or anhedonia. There can also be other symptoms, including sleep, mood, or motor disturbance.

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The relationship between autism and psychosis is complex. For instance, some autistics may have an underlying vulnerability and be at higher risk for psychotic episodes. A thorough discussion of this relationship is certainly out of scope for this book. While autism and psychosis can co-​exist, comments here are limited to aspects of autism that can make autistics look psychotic when they are not. Overlap and differences: Negative symptoms. Individuals in both groups can display withdrawal, poor hygiene, poor eye contact, flat affect, low motivation, or low initiation of speech or activity. In one study by M. Mary Konstantareas and Terri Hewitt, 50% of a group of autistic males demonstrated significant negative symptoms of schizophrenia but no clear positive symptoms, like delusions or hallucinations. In cases where there is a decline from a previously higher level of adaptive functioning, it is important to differentiate if the decline is due to autistic burnout and/​or depression, as opposed to a decline resulting from psychosis. The appearance of paranoia/​ delusions. Delusions, paranoid or otherwise, are not features of autism. However, autistics may look paranoid when: (a) they are unable to intuitively understand other people’s intentions and/​or (b) they have had negative or traumatic social experiences and automatically jump to a negative interpretation of another person’s intent. In addition, the intense interests and rigid thinking that autistic people have about certain topics, such as aspects of politics or healthcare, can present like delusions. For instance, I recently worked with an autistic woman who was completely and rigidly convinced that all of her autistic son’s lifelong behavioral, emotional, and academic challenges were related to their home being near a power line. Hallucinations. Hallucinations are not features of autism. However, experiences that can look like hallucinations occur at a higher rate among autistic people. For instance, when an autistic person tells you that they can hear the hum of electricity in the walls, it can be hard for someone who does not have that level of sensory over-​responsivity to understand what the autistic person is describing. One study, by Elizabeth Milne and her colleagues, showed that autistics are three times more likely to have atypical perceptions as a result of over-​responsivity to sensory stimuli. This can be particularly challenging when it is difficult to understand

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what the autistic person is trying to communicate about their sensory experience. Additionally, some autistics process emotionally triggering events in their lives by repeatedly replaying those events in their heads, and sometimes even creating a dialog where they role-​play their part in the event out loud while imagining the parts of the other actors in the upsetting situation. From the outside, this can look like they are hearing voices. One night Shariq’s parents heard him shouting at people who were not there while he was taking a shower. When they later asked him what was going on, he told them that he was replaying a fight he’d had with some of his friends earlier that week in his head, trying to figure out what he could have done differently.

Disorganized or unusual language. Some autistic individuals have difficulty relaying a narrative in a way that can be easily understood. They may fail to provide context or may provide too many details and get “lost” in those details. As David R. Dossetor (among others) has observed, this can give the appearance of loose associations or disorganized thinking. Unusual use of language, such as neologisms, can also contribute to the impression of psychosis. A decline in functioning. A significant decline in functioning, particularly during adolescence or young adulthood, is widely considered to be a hallmark of psychosis. While autism is not a degenerative disorder, autistic adolescents and young adults can sometimes experience a decline in functioning, and/​or an increase in autistic traits during these years. This is often due to decreased structure, increased academic expectations, and social stressors. For instance, previously undiagnosed autistics sometimes crash when they transition to living on a college campus. When evaluating an individual with this presentation, it is essential to consider the possibility of previously undiagnosed autism that has been exacerbated by stress, trauma, depression, autistic burnout, or some combination of all these factors. Endorsements on self-​report measures. Many autistics endorse unusual items on self-​report measures because they misunderstand the intent of the item as a result of a high need for explicitly stated context. For

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example, when children or adolescents endorse the statement, “I am not sure if things will work out for me” on the CDI-​2, it is worth following up. When asked about this, many do not describe a feeling of pessimism about their own future but instead comment matter-​of-​ factly that, “No one can know the future.” Similarly, many autistics will endorse “psychotic” items on these measures, such as “I hear things that no one else can hear,” referring simply to their over-​responsivity to auditory input. 16-​year-​old Tess was a wonderfully talented musician who “sailed through elementary school” but then began to struggle with anxiety and depression in 6th grade.Tess was seen for an evaluation at the age of 13.Though there was no family history of psychosis and no evidence that Tess had experienced hallucinations, delusions, disordered thinking, impaired reality testing, or a decline in adaptive functioning, the psychologist concluded that Tess was experiencing “a burgeoning (or possibly active) psychotic disorder.”The evaluator went on to discuss a “likely” schizoaffective disorder or schizophrenia in this 13-​year-​old, who was earning straight A’s and had solid adaptive skills. This conclusion was reportedly based on Tess’s responses on several self-​ report measures, where she indicated that she sometimes hears voices in her head that no one else can hear, sometimes feels like someone wants to hurt her, and experiences unexplained sensory symptoms.This evaluator did not consider the possibility that Tess is autistic, despite clear evidence in the developmental history.The evaluator was unaware that many autistics over-​ endorse items on self-​report measures, in part because of misinterpretations of what the items are really asking. On that psychologist’s recommendation, Tess was admitted to an inpatient program, where the staff saw no evidence of psychosis and raised the possibility of autism. Tess’s parents, who had been terrified that their daughter was schizophrenic, researched autism and immediately recognized their daughter in that description. More importantly, Tess herself read about autism and felt understood, validated, and hopeful for the first time in many years.

In summary, clinicians should consider autism in the differential with possibly psychotic clients, especially when negative symptoms are present and positive symptoms are not. A decline in functioning in adolescence or young adulthood does not preclude autism and in fact is not at all uncommon in this population. Additionally, psychosis and autism

Traits and diagnoses that can be confused with autism  215

can co-​occur, and co-​occurrence may be best identified when new hallucinations and disorganized behavior emerge and persist, when these do not improve with increased structure and resumption of routines, and when they decline with antipsychotic medication. As Meng-​Chuan Lai and Simon Baron-​Cohen summarize, “The crucial point of differentiation is whether symptoms that seem psychotic in nature can be better understood as stemming from core features or reactive behaviors of autism spectrum conditions.”

Social (pragmatic) communication disorder (S/​P CD) S/​PCD is a relatively new diagnosis that was introduced in the DSM-​ 5. The criteria for this diagnosis are very similar to the three social/​ communication criteria for autism. S/​PCD is marked by “persistent difficulties in the social use of verbal and nonverbal communication,” including difficulty: • Using communication for social purposes, such as greeting or sharing information, • Changing communication to match the context or the needs of the listener, • Following rules for conversation and storytelling, and • Understanding implicit or nonliteral messages. Sound familiar? As noted in the DSM-​5-​TR, the primary difference between S/​PCD and autism lies in the repetitive/​restricted criteria (RRBs), in that these are present in autism but not in S/​PCD. As the DSM reminds us, the restricted/​repetitive traits or behaviors may have been more evident in the past, so taking a detailed history is crucial. Importantly, the DSM-​5-​ TR specifies that the symptoms of S/​PCD cannot be better explained by autism, that is, autism must first be ruled out before S/​PCD is diagnosed. It states, “…The diagnosis of autism spectrum disorder supersedes that of social (pragmatic) communication disorder whenever the criteria for autism spectrum disorder are met, and care should be taken to enquire carefully regarding past or current restricted/​repetitive behavior.”

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I agree with researchers, such as William Mandy and his colleagues as well as Yvette Hus and Osnat Segal, who are not yet convinced that S/​PCD is distinct from autism. As Susanne Duvall and her colleagues wrote, “clinical experience suggests that this diagnosis is frequently given without a thorough assessment for ‘pink flags’ and other symptoms that would support the diagnosis of autism had the evaluator asked about them/​tested them as part of their assessment and diagnostic interview process.”

Nonverbal learning disorder (NVLD) NVLD, sometimes referred to as NLD, is not a formal diagnosis; rather, it is a neuropsychological profile. After decades of discussion, there still does not seem to be full consensus on NVLD symptoms. Essential traits include a weakness in visual-​spatial skills and a relative strength in language skills, most commonly measured by a statistically significant verbal/​visual difference on an IQ test. Related issues are noted to include difficulties with executive functioning, math concepts, fine and gross motor skills, and nonverbal aspects of communication (e.g., using nonverbal communication, and accurately interpreting other people’s nonverbal cues). Joseph Palombo and Anne Berenberg suggest that children with NVLD speak in a monotone, have unusual intonation, or seem “wooden and constricted.” Other traits that are sometimes discussed in the context of NVLD include difficulties related to higher order comprehension (getting the main idea), coordination and balance (including a tendency to bump into people and things), the modulation of attention and focus, peer relationships, coping with transitions and novel situations, and understanding nonliteral language, as well as sensory sensitivities, anxiety, depression, and obsessional preoccupations. Related strengths often include early language development, attention to detail, and rote memory, as well as excellent spelling and reading skills (hyperlexia). Devon Frye and Linda Karanzalis say they “talk like an adult from a young age,” are “naïve or overly trusting,” and “always asking questions, to the point of being repetitive or interrupting the regular flow of conversation.” Does this sound familiar to you? Many, if not most, of the secondary symptoms/​traits of NVLD clearly overlap with autism. Some autistic individuals certainly have the

Traits and diagnoses that can be confused with autism  217

verbal/​visual-​spatial profile of NVLD, while others have strong visual-​ spatial skills with a relative weakness in language (and there are many autistics who do not have a significant difference between their verbal and visual-​spatial skills). That is, some autistics have an NVLD profile, and some people with an NVLD profile are also autistic. Clearly, more research is required to better understand how many people with this neuropsychological profile would also meet criteria for autism. In the meantime, if an individual has an NVLD neuropsychological profile, consider the possibility that they are autistic as well. This is particularly important due to the fact that NVLD is not a reimbursable diagnosis or an included category under IDEA.

Broader autism phenotype (BAP) The broader autism phenotype refers to social/​ communication and behavioral traits that seem autistic but do not meet the threshold for diagnosis. Like NVLD, this is not a formal diagnosis. For any diagnosis (e.g., reading disorder, depression, ADHD), there will always be individuals who almost meet criteria but not quite, and the same is true for autism. It is also true that autistic traits may appear to be subthreshold for other reasons, e.g., the environment is highly accommodating, or the parents or teachers filling out the rating scales are used to autistic behavior and do not perceive it to be unusual. It is reasonable to believe that relatives of autistics are more likely to have the BAP than others in the general population. Still, as our understanding of autism has dramatically expanded in the past few decades, it is likely that some individuals (though certainly not all) who would have been considered as BAP in the past would now be considered autistic. When working with a client who is on the threshold between BAP and autism, give deep and serious consideration to the functional impairment. As a reminder, functional impairment is not limited to observable social or behavioral impairment but also includes the emotional and physical toll of living with undiagnosed autism. Note 1 I am indebted to Deirdre V. Lovecky, PhD, for her work helping clinicians and educators understand gifted students. I am also grateful for her assistance on this section.

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Traits and diagnoses that can be confused with autism  223 Jang, J., Matson, J. L., Cervantes, P. E., & Goldin, R. L. (2013). The relationship between race and comorbid symptoms in infants and toddlers with autism spectrum disorder. Research in Autism Spectrum Disorders, 7(11), 1433–​ 1438. https://​doi.org/​10.1016/​j.rasd.2013.08.011 Kambanis, P. E., Kuhnle, M. C., Wons, O. B., Jo, J. H., Keshishian, A. C., Hauser, K., Becker, K. R., Franko, D. L., Misra, M., Micali, N., Lawson, E. A., Eddy, K. T., & Thomas, J. J. (2020). Prevalence and correlates of psychiatric comorbidities in children and adolescents with full and subthreshold avoidant/​restrictive food intake disorder. The International Journal of Eating Disorders, 53(2), 256–​265. https://​doi.org/​10.1002/​eat.23191 Kentrou, V., de Veld, D. M., Mataw, K. J., & Begeer, S. (2019). Delayed autism spectrum disorder recognition in children and adolescents previously diagnosed with attention-​ deficit/​ hyperactivity disorder. Autism, 23(4), 1065–​ 1072. https://​doi.org/​10.1177/​13623​6131​8785​171 Kenworthy, L. E., Black, D. O., Wallace, G. L., Ahluvalia, T., Wagner, A. E., & Sirian, L. M. (2005). Disorganization: The forgotten executive dysfunction in high-​ functioning autism (HFA) spectrum disorders. Developmental Neuropsychology, 28(3), 809–​827. https://​doi.org/​10.1207/​s15326​942d​ n280​3_​4 Kerns, C. M., Newschaffer, C. J., Berkowitz, S., & Lee, B. K. (2017). Brief report: Examining the association of autism and adverse childhood experiences in the National Survey of Children’s Health: The important role of income and co-​occurring mental health conditions. Journal of Autism and Developmental Disorders, 47(7), 2275–​2281. https://​doi.org/​10.1007/​s10​ 803-​017-​3111-​7 Klein, E. R., Ruiz, C. E., Morales, K., & Stanley, P. (2019). Variations in parent and teacher ratings of internalizing, externalizing, adaptive skills, and behavioral symptoms in children with selective mutism. International Journal of Environmental Research and Public Health, 16(21), 4070. https://​doi.org/​ 10.3390/​ije​rph1​6214​070 Koehler, J., & Buell, S. (2020, November 5). Living with intensity: Towards a greater understanding of the unique needs of gifted learners. 67th Annual National Association for Gifted Children (NAGC) Convention, Disney’s Coronado Springs Resort, Florida. Konstantareas, M. M., & Hewitt, T. (2001). Autistic disorder and schizophrenia: Diagnostic overlaps. Journal of Autism and Developmental Disorders, 31(1), 19–​28. https://​doi.org/​10.1023/​A:100560​5528​309 Lai, C. L. E., Lau, Z., Lui, S. S. Y., Lok, E., Tam, V., Chan, Q., Cheng, K. M., Lam, S. M., & Cheung, E. F. C. (2017). Meta-​analysis of neuropsychological measures of executive functioning in children and adolescents with

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high-​functioning autism spectrum disorder. Autism Research, 10(5), 911–​939. https://​doi.org/​10.1002/​aur.1723 Lai, M.-​C., & Baron-​Cohen, S. (2015). Identifying the lost generation of adults with autism spectrum conditions. The Lancet Psychiatry, 2(11), 1013–​1027. https://​doi.org/​10.1016/​S2215-​0366(15)00277-​1 Lasgaard, M., Nielsen, A., Eriksen, M. E., & Goossens, L. (2010). Loneliness and social support in adolescent boys with autism spectrum disorders. Journal of Autism and Developmental Disorders, 40(2), 218–​226. https://​doi.org/​ 10.1007/​s10​803-​009-​0851-​z Lugnegård, T., Hallerbäck, M. U., & Gillberg, C. (2012). Personality disorders and autism spectrum disorders: What are the connections? Comprehensive Psychiatry, 53(4), 333–​340. https://​doi.org/​10.1016/​j.compps​ ych.2011.05.014 Maenner, M. J., Shaw, K. A., Baio, J., Washington, A., Patrick, M., DiRienzo, M., Christensen, D. L., Wiggins, L. D., Pettygrove, S., Andrews, J. G., Lopez, M., Hudson, A., Baroud, T., Schwenk, Y., White, T., Rosenberg, C. R., Lee, L.-​C., Harrington, R. A., Huston, M., … Dietz, P. M. (2020). Prevalence of autism spectrum disorder among children aged 8 years —​Autism and Developmental Disabilities Monitoring Network, 11 sites, United States, 2016. MMWR Surveillance Summaries, 69(4), 1–​12. https://​doi.org/​10.15585/​ mmwr.ss690​4a1 Maïano, C., Normand, C. L., Salvas, M.-​C., Moullec, G., & Aimé, A. (2016). Prevalence of school bullying among youth with autism spectrum disorders: A systematic review and meta-​analysis. Autism Research: Official Journal of the International Society for Autism Research, 9(6), 601–​615. https://​doi.org/​ 10.1002/​aur.1568 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 and Developmental Disorders, 37(9), 1795–​1802. https://​ doi.org/​10.1007/​s10​803-​006-​0314-​8 Mandell, D. S., Walrath, C. M., Manteuffel, B., Sgro, G., & Pinto-​Martin, J. A. (2005). The prevalence and correlates of abuse among children with autism served in comprehensive community-​based mental health settings. Child Abuse & Neglect, 29(12), 1359–​1372. https://​doi.org/​10.1016/​j.chi​ abu.2005.06.006 Mandy, W., & Tchanturia, K. (2015). Do women with eating disorders who have social and flexibility difficulties really have autism? A case series. Molecular Autism, 6(1), 6. https://​doi.org/​10.1186/​2040-​2392-​6-​6 Mandy, W., Wang, A., Lee, I., & Skuse, D. (2017). Evaluating social (pragmatic) communication disorder. Journal of Child Psychology and Psychiatry, 58(10), 1166–​1175. https://​doi.org/​10.1111/​jcpp.12785

Traits and diagnoses that can be confused with autism  225 Mansell, S., Sobsey, D., & Moskal, R. (1998). Clinical findings among sexually abused children with and without developmental disabilities. Mental Retardation, 36(1), 12–​22. https://​doi.org/​10.1352/​0047-​6765(1998)0362.0.CO;2 Markarian, Y., Larson, M. J., Aldea, M. A., Baldwin, S. A., Good, D., Berkeljon, A., Murphy, T. K., Storch, E. A., & McKay, D. (2010). Multiple pathways to functional impairment in obsessive-​compulsive disorder. Clinical Psychology Review, 30(1), 78–​88. https://​doi.org/​10.1016/​j.cpr.2009.09.005 Mayes, S. D., Calhoun, S. L., Waschbusch, D. A., & Baweja, R. (2017). Autism and reactive attachment/​ disinhibited social engagement disorders: Co-​ occurrence and differentiation. Clinical Child Psychology and Psychiatry, 22(4), 620–​631. https://​doi.org/​10.1177/​13591​0451​6678​039 McDonnell, C. G., Boan, A. D., Bradley, C. C., Seay, K. D., Charles, J. M., & Carpenter, L. A. (2019). Child maltreatment in autism spectrum disorder and intellectual disability: Results from a population-​based sample. Journal of Child Psychology and Psychiatry, 60(5), 576–​584. https://​doi.org/​10.1111/​ jcpp.12993 Mehtar, M., & Mukaddes, N. M. (2011). Posttraumatic stress disorder in individuals with diagnosis of autistic spectrum disorders. Research in Autism Spectrum Disorders, 5(1), 539–​546. https://​doi.org/​10.1016/​j.rasd.2010.06.020 Meier, S. M., Petersen, L., Schendel, D. E., Mattheisen, M., Mortensen, P. B., & Mors, O. (2015). Obsessive-​compulsive disorder and autism spectrum disorders: Longitudinal and offspring risk. PLoS ONE, 10(11), e0141703. https://​doi.org/​10.1371/​jour​nal.pone.0141​703 Milne, E. (n.d.). Autistic people are three times more likely to have hallucinations. The Conversation. http://​thec​onve​rsat​ion.com/​autis​tic-​peo​ple-​are-​three-​times-​ more-​lik​ely-​to-​have-​hal​luci​nati​ons-​77337 Milne, E., Dickinson, A., & Smith, R. (2017). Adults with autism spectrum conditions experience increased levels of anomalous perception. PLOS ONE, 12(5), e0177804. https://​doi.org/​10.1371/​jour​nal.pone.0177​804 Moran, H. (2010). Clinical observations of the differences between children on the autism spectrum and those with attachment problems: The Coventry Grid. Good Autism Practice (GAP), 11(2), 46–​59. Morgan, P. L., Staff, J., Hillemeier, M. M., Farkas, G., & Maczuga, S. (2013). Racial and ethnic disparities in ADHD diagnosis from kindergarten to eighth grade. Pediatrics, 132(1), 85–​93. https://​doi.org/​10.1542/​ peds.2012-​2390 Muris, P., & Ollendick, T. H. (2021). Selective mutism and its relations to social anxiety disorder and autism spectrum disorder. Clinical Child and Family Psychology Review, 24(2), 294–​325. https://​doi.org/​10.1007/​s10​ 567-​020-​00342-​0

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Neff, M. A. (2021, October 11). Autism vs. OCD. Neurodivergent Insights. https://​neu​rodi​verg​enti​nsig​hts.com/​misdi​agno​sis-​mon​day/​ocd-​vs-​aut​ism Neff, M. A. (2021, September 27). PTSD and autism. Neurodivergent Insights. https://​ n eu​ rodi​ verg​ e nti​ n sig​ h ts.com/​ m isdi​ a gno ​ s is- ​ m on ​ d ay/ ​ p tsd- ​ a nd-​ aut​ism Nyrenius, J., Eberhard, J., Ghaziuddin, M., Gillberg, C., & Gillstedt, E. (2022). Prevalence of autism spectrum disorders in adult outpatient psychiatry. Journal of Autism and Developmental Disorders, 52, 3769–​3779. https://​doi.org/​ 10.1007/​s10​803-​021-​05411-​z Ozonoff, S., Pennington, B. F., & Rogers, S. J. (1991). Executive function deficits in high-​functioning autistic individuals: Relationship to theory of mind. Journal of Child Psychology and Psychiatry, 32(7), 1081–​1105. https://​doi. org/​10.1111/​j.1469-​7610.1991.tb00​351.x Palombo, J., & Berenberg, A. H. (1999). Working with parents of children with nonverbal learning disabilities: A conceptual and intervention model. In J. A. Incorvaia, B. S. Mark-​Goldstein, & D. Tessmer (Eds.), Understanding, diagnosing, and treating AD/​HD in children and adolescents: An integrated approach (pp. 389–​441). Aronson. Paula-​Pérez, I. (2013). Differential diagnosis between obsessive compulsive disorder and restrictive and repetitive behavioural patterns, activities and interests in autism spectrum disorders. Revista de Psiquiatria y Salud Mental, 6(4), 178–​186. https://​doi.org/​10.1016/​j.rpsm.2012.07.005 Pelletier, G. (1998). Borderline personality disorder vs. Asperger’s disorder. Journal of the American Academy of Child and Adolescent Psychiatry, 37(11), 1128. https://​doi.org/​10.1097/​00004​583-​199811​000-​00005 Postorino, V., Kerns, C. M., Vivanti, G., Bradshaw, J., Siracusano, M., & Mazzone, L. (2017). Anxiety disorders and obsessive-​compulsive disorder in individuals with autism spectrum disorder. Current Psychiatry Reports, 19(12), 92. https://​doi.org/​10.1007/​s11​920-​017-​0846-​y Ratto, A. B., Kenworthy, L., Yerys, B. E., Bascom, J., Wieckowski, A. T., White, S. W., Wallace, G. L., Pugliese, C., Schultz, R. T., Ollendick, T. H., Scarpa, A., Seese, S., Register-​Brown, K., Martin, A., & Anthony, L. G. (2018). What about the girls? Sex-​based differences in autistic traits and adaptive skills. Journal of Autism and Developmental Disorders, 48(5), 1698–​1711. https://​doi. org/​10.1007/​s10​803-​017-​3413-​9 Regan, T. (2021). Understanding autism in adults and aging adults: New insights for improving diagnosis and quality of life (2nd ed.). Indiego Publishing LLC. Rhind, C., Bonfioli, E., Hibbs, R., Goddard, E., Macdonald, P., Gowers, S., Schmidt, U., Tchanturia, K., Micali, N., & Treasure, J. (2014). An examination of autism spectrum traits in adolescents with anorexia nervosa

Traits and diagnoses that can be confused with autism  227 and their parents. Molecular Autism, 5(1), 56. https://​doi.org/​10.1186/​ 2040-​2392-​5-​56 Ritter, K., Dziobek, I., Preißler, S., Rüter, A., Vater, A., Fydrich, T., Lammers, C.-​H., Heekeren, H. R., & Roepke, S. (2011). Lack of empathy in patients with narcissistic personality disorder. Psychiatry Research, 187(1–​2), 241–​247. https://​doi.org/​10.1016/​j.psych​res.2010.09.013 Rogers, J., Viding, E., Blair, R. J., Frith, U., & Happé, F. (2006). Autism spectrum disorder and psychopathy: Shared cognitive underpinnings or double hit? Psychological Medicine, 36(12), 1789–​1798. https://​doi.org/​10.1017/​ S00332​9170​6008​853 Rommelse, N. N. J., Franke, B., Geurts, H. M., Hartman, C. A., & Buitelaar, J. K. (2010). Shared heritability of attention-​deficit/​hyperactivity disorder and autism spectrum disorder. European Child & Adolescent Psychiatry, 19(3), 281–​295. https://​doi.org/​10.1007/​s00​787-​010-​0092-​x Rommelse, N., Visser, J., & Hartman, C. (2018). Differentiating between ADHD and ASD in childhood: Some directions for practitioners. European Child & Adolescent Psychiatry, 27, 679–​681. https://​doi.org/​10.1007/​s00​ 787-​018-​1165-​5 Rumball, F., Happé, F., & Grey, N. (2020). Experience of trauma and PTSD symptoms in autistic adults: Risk of PTSD development following DSM-​5 and non-​DSM-​5 traumatic life events. Autism Research: Official Journal of the International Society for Autism Research, 13(12), 2122–​2132. https://​doi.org/​ 10.1002/​aur.2306 Rumsey, J. M., & Hamburger, S. D. (1990). Neuropsychological divergence of high-​level autism and severe dyslexia. Journal of Autism and Developmental Disorders, 20(2), 155–​168. https://​doi.org/​10.1007/​BF0​2284​715 Ruzzano, L., Borsboom, D., & Geurts, H. M. (2015). Repetitive behaviors in autism and obsessive-​compulsive disorder: New perspectives from a network analysis. Journal of Autism and Developmental Disorders, 45(1), 192–​202. https://​ doi.org/​10.1007/​s10​803-​014-​2204-​9 Rydén, G., Rydén, E., & Hetta, J. (2008). Borderline personality disorder and autism spectrum disorder in females —​a cross-​sectional study. Clinical Neuropsychiatry, 5(1), 22–​30. Scoyoc, A., Marquardt, M., & Phelps, R. (2018). The challenge and importance of differentiating trauma and stress-​related disorders. In J. Fogler & R. Phelps (Eds.), Trauma, autism, and neurodevelopmental disorders: Integrating research, practice, and policy (pp. 73–​91). Springer. https://​doi.org/​10.1007/​ 978-​3-​030-​00503-​0_​5 Shah, A. (2016, December 6). Catatonia and catatonia-​type breakdown in autism. National Autistic Society. www.aut​ism.org.uk/​adv​ice-​and-​guida​nce/​profe​ ssio​nal-​pract​ice/​catato​nia-​aut​ism

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Stavropoulos, K. K.-​M., Bolourian, Y., & Blacher, J. (2018). Differential diagnosis of autism spectrum disorder and post traumatic stress disorder: Two clinical cases. Journal of Clinical Medicine, 7(4), 71. https://​doi.org/​10.3390/​ jcm​7040​071 Stavropoulos, K. and McPartland, J. (Ed.) (2022). Differential Diagnosis of Autism Spectrum Disorder. Oxford University Press. Steffenburg, H., Steffenburg, S., Gillberg, C., & Billstedt, E. (2018). Children with autism spectrum disorders and selective mutism. Neuropsychiatric Disease and Treatment, 14, 1163–​1169. https://​doi.org/​10.2147/​NDT.S154​966 Stein, M. B., Yang, B.-​Z., Chavira, D. A., Hitchcock, C. A., Sung, S. C., Shipon-​Blum, E., & Gelernter, J. (2011). A common genetic variant in the neurexin superfamily member CNTNAP2 is associated with increased risk for selective mutism and social anxiety-​related traits. Biological Psychiatry, 69(9), 825–​831. https://​doi.org/​10.1016/​j.biops​ych.2010.11.008 Stevens, T., & Morash, M. (2015). Racial/​ethnic disparities in boys’ probability of arrest and court actions in 1980 and 2000: The disproportionate impact of “getting tough” on crime. Youth Violence and Juvenile Justice, 13(1), 77–​95. https://​doi.org/​10.1177/​15412​0401​3515​280 Strunz, S., Westphal, L., Ritter, K., Heuser, I., Dziobek, I., & Roepke, S. (2015). Personality pathology of adults with autism spectrum disorder without accompanying intellectual impairment in comparison to adults with personality disorders. Journal of Autism and Developmental Disorders, 45(12), 4026–​ 4038. https://​doi.org/​10.1007/​s10​803-​014-​2183-​x Sucksmith, E., Roth, I., & Hoekstra, R. A. (2011). Autistic traits below the clinical threshold: Re-​examining the broader autism phenotype in the 21st century. Neuropsychology Review, 21(4), 360–​389. https://​doi.org/​10.1007/​s11​ 065-​011-​9183-​9 Takara, K., Kondo, T., & Kuba, T. (2015). How and why is autism spectrum disorder misdiagnosed in adult patients: From diagnostic problem to management for adjustment. Mental Health in Family Medicine, 11(2), 73–​88. Tebartz van Elst, L., Pick, M., Biscaldi, M., Fangmeier, T., & Riedel, A. (2013). High-​functioning autism spectrum disorder as a basic disorder in adult psychiatry and psychotherapy: Psychopathological presentation, clinical relevance and therapeutic concepts. European Archives of Psychiatry and Clinical Neuroscience, 263 Suppl 2, S189–​196. https://​doi.org/​10.1007/​s00​406-​013-​0459-​3 Topal, Z., Demir Samurcu, N., Taskiran, S., Tufan, A. E., & Semerci, B. (2018). Social communication disorder: A narrative review on current insights. Neuropsychiatric Disease and Treatment, 14, 2039–​2046. https://​doi.org/​ 10.2147/​NDT.S121​124

Traits and diagnoses that can be confused with autism  229 Turcotte, P., Shea, L. L., & Mandell, D. (2018). School discipline, hospitalization, and police contact overlap among individuals with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48(3), 883–​891. https://​ doi.org/​10.1007/​s10​803-​017-​3359-​y Tyson, K. E., & Cruess, D. G. (2012). Differentiating high-​functioning autism and social phobia. Journal of Autism and Developmental Disorders, 42(7), 1477–​ 1490. https://​doi.org/​10.1007/​s10​803-​011-​1386-​7 Valenti, M., Ciprietti, T., Egidio, C. D., Gabrielli, M., Masedu, F., Tomassini, A. R., & Sorge, G. (2012). Adaptive response of children and adolescents with autism to the 2009 earthquake in L’Aquila, Italy. Journal of Autism and Developmental Disorders, 42(6), 954–​960. https://​doi.org/​10.1007/​s10​ 803-​011-​1323-​9 Van Schalkwyk, G. I., Peluso, F., Qayyum, Z., McPartland, J. C., & Volkmar, F. R. (2015). Varieties of misdiagnosis in ASD: An illustrative case series. Journal of Autism and Developmental Disorders, 45(4), 911–​918. van Steensel, F. J. A., Bögels, S. M., & Perrin, S. (2011). Anxiety disorders in children and adolescents with autistic spectrum disorders: A meta-​analysis. Clinical Child and Family Psychology Review, 14(3), 302–​317. https://​doi.org/​ 10.1007/​s10​567-​011-​0097-​0 Walters, J., Hughes, T., Sutton, L., Marshall, S., Crothers, L., Lehman, C., Paserba, D., Talkington, V., Taormina, R., & Huang, A. (2013). Maltreatment and depression in adolescent sexual offenders with an autism spectrum disorder. Journal of Child Sexual Abuse, 22, 72–​89. https://​doi.org/​10.1080/​ 10538​712.2013.735​357 Webb, J. T. (2007). A parent’s guide to gifted children. Great Potential Press. Weiss, J. A., & Fardella, M. A. (2018). Victimization and perpetration experiences of adults with autism. Frontiers in Psychiatry, 9, 203. https://​doi.org/​ 10.3389/​fpsyt.2018.00203 Wentz, E., Lacey, J. H., Waller, G., Råstam, M., Turk, J., & Gillberg, C. (2005). Childhood onset neuropsychiatric disorders in adult eating disorder patients: A pilot study. European Child & Adolescent Psychiatry, 14(8), 431–​437. https://​doi.org/​10.1007/​s00​787-​005-​0494-​3 Westwood, H., Eisler, I., Mandy, W., Leppanen, J., Treasure, J., & Tchanturia, K. (2016). Using the Autism-​Spectrum Quotient to measure autistic traits in anorexia nervosa: A systematic review and meta-​analysis. Journal of Autism and Developmental Disorders, 46(3), 964–​977. https://​doi.org/​10.1007/​s10​ 803-​015-​2641-​0 Westwood, H., Mandy, W., & Tchanturia, K. (2017). Clinical evaluation of autistic symptoms in women with anorexia nervosa. Molecular Autism, 8(1), 12. https://​doi.org/​10.1186/​s13​229-​017-​0128-​x

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White, S. W., Maddox, B. B., Mazefsky, C. A. (2020). The Oxford handbook of autism and co-​occurring psychiatric conditions. Oxford: Oxford University Press. https://​doi.org/​10.1093/​oxfor​dhb/​978019​0910​761.001.0001 Wikramanayake, W. N. M., Mandy, W., Shahper, S., Kaur, S., Kolli, S., Osman, S., Reid, J., Jefferies-​Sewell, K., & Fineberg, N. A. (2018). Autism spectrum disorders in adult outpatients with obsessive compulsive disorder in the UK. International Journal of Psychiatry in Clinical Practice, 22(1), 54–​62. https://​doi. org/​10.1080/​13651​501.2017.1354​029 Young, S., González, R. A., Mullens, H., Mutch, L., Malet-​Lambert, I., & Gudjonsson, G. H. (2018). Neurodevelopmental disorders in prison inmates: Comorbidity and combined associations with psychiatric symptoms and behavioural disturbance. Psychiatry Research, 261, 109–​115. https://​doi. org/​10.1016/​j.psych​res.2017.12.036 Yuhas, D. (2019, February 27). Untangling the ties between autism and obsessive-​ compulsive disorder. Spectrum News. www.spect​rumn​ews.org/​featu​res/​deep-​ dive/​unt​angl​ing-​ties-​aut​ism-​obsess​ive-​com​puls​ive-​disor​der/​ Zeanah, C., Mary, M., & Gleason, M. M. (2010, January). Reactive Attachment Disorder: A review for DSM-​V. American Psychiatric Association. www.resea​ rchg​ate.net/​prof​i le/​Char​les-​Zea​nah/​publ​icat​ion/​228683818_​Reactive_​ Attachmen​t_​Di​sord​er_​a​_​rev​iew_​for_​DSM-​V/​links/​0deec​51e8​6576​d1e8​ c000​000/​React​ive-​Att​achm​ent-​Disor​der-​a-​rev​iew-​for-​DSM-​V.pdf

Chapter 10

How to organize and integrate your data

Why is it important to have an organized process? Seasoned clinicians understand the usefulness and importance of developing and paying attention to clinical intuition, and I encourage you to keep listening to that inner voice that guides you to do good work with your clients. However, it is also essential to know the limits of that intuition. For some reason, many clinicians seem to have an underlying belief that they will just know if a client is autistic. This is likely based on the misconception that all autistic people are overtly atypical, with uneven eye contact, poor social niceties, and odd interests. We now know, however, that there are many autistics who can blend in seamlessly with non-​autistics (at great cost), so we can’t rely solely or even primarily on clinical intuition for these individuals. It is also worth pointing out that we don’t rely primarily on clinical intuition to diagnose other developmental issues, such as ADHD or a learning disorder, right? To determine whether one of those is present, we collect specific data in an organized way. This data includes the client’s subjective experience. Then we compare that data to an agreed-​ upon list of criteria (e.g., from the DSM or the ICD) and decide whether or not to diagnose based on how well the data meets the criteria. We should be doing the exact same thing with autism. The primary goal of the organization/​integration process is to synthesize your findings and draw your conclusions. A structured decision-​ making process can accomplish this and so much more.

DOI: 10.4324/9781003403838-11

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A structured decision-​making process: • Forces you to organize and consider all of your data. • Helps you avoid the trap of relying too much on intuition. • Helps you avoid the trap of ignoring parts of your data. • Clarifies whether there is still missing data. • Gives you a data-​based method for deciding whether or not to diagnose autism. • Gives you clarity about the primary problem areas. • Helps you uncover all of the strengths. • Helps you prioritize your recommendations. • Provides a structured way to educate and convince the client, their family, their educators, and the other involved healthcare professionals. • Helps increase your confidence and decrease your own insecurities when faced with a challenging case. Moving through your decision-​making process in a data-​ based way will keep you “honest.” It will force you to organize and synthesize all of your data –​the interviews, rating scales, test scores, behavioral observations, and prior documentation –​rather than allowing yourself to be overly swayed by one part of the picture or to ignore relevant parts. If you use this process well, it will prevent you from ruling out autism before fully considering it, and it will also prevent you from diagnosing autism too easily. It will force you to be organized, methodical, and data-​based, and our clients deserve no less from us. Organizing your data carefully will show you what data you may still need to collect. For instance, as you move through the process, you may find that your client meets all of the criteria except for one. This directs you to review that category. It may be that you are confident that they do not meet that criterion, in which case you will not diagnose autism. Alternately, you may find that you simply did not ask enough questions in that area. If so, you will need to go back

How to organize and integrate your data  233

to the client, parents, and/​or teachers and ask a few more questions. This is particularly common and important for clinicians who are new to this kind of work. I can certainly recall times when I realized, late in the process, that I completely forgot to ask about certain issues! When this happens, there is no need to feel awkward about reaching back out to people; they will be impressed and grateful that you are being so thorough. Having an organized decision-​ making process will help you clarify the problem areas, the strengths, and the priorities for your recommendations. The real point of an evaluation is not only to diagnose, but also to help a client discover their strengths and their challenges and to provide them with a roadmap to move forward. Even in those cases when I realize fairly quickly that a client is or is not autistic, I still move through the entire process to help them clarify what they do better than most people, what they struggle with and why, and what steps they may take to move toward their goals. Simply saying “You’re autistic” or “You’re not autistic” does not accomplish any of this. An organized decision-​making process will also help you educate and convince everyone involved. First and foremost, this means the client and their family members. Some individuals/​parents are hoping for or expecting an autism diagnosis, but for others it will come as a shock or as unwelcome news. Many people in the general population have a very limited and outdated understanding of autism. Those individuals will require you to educate them about the criteria (in nonjudgmental terms) and how it fits for them or their loved one. Having the data at the ready, with many examples presented in an organized format, will enable you to communicate more effectively with them. This is discussed more thoroughly in the next chapter. Is there such a thing as autistic imposter syndrome? Yes! Some autistics who camouflage and who get a late diagnosis are vulnerable to this type of imposter syndrome. That is, even when the diagnosis validates and relieves them, they may go through periods when they worry that they don’t “deserve” the diagnosis. The key here is that the diagnosis makes sense to them

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and provides them with relief; they don’t want it to be a mistake, but they can worry that it is a mistake. If you have provided them with a strong, data-​based rationale, then they will be able to reread your words and reassure themselves when needed. You will also likely need to educate and convince educators and/​ or other healthcare professionals involved with your client through discussion, a written letter, and/​or a formal report. Remember that other professionals often misunderstand autism and may not agree with your findings if you don’t make a good case for them. If this happens, then you have not fully supported your client. Moving thoughtfully through the decision-​making process will help you clarify and organize your thoughts, so you will be better able to talk and write about them in a way that is both convincing and easy for others to follow. Document your findings effectively by including this data; this will enable you to make your case and better advocate for your client. Using this recommended process will support your professional development. It will force you to consider whether each of your client’s challenges or strengths could be an autistic trait. You will also become more familiar and comfortable with the criteria and the many different ways that the criteria can present in autistic people. You will not only have to pause and ask yourself, “Could _​_​_​_​_​be a trait of autism?” but also “Which trait?”, i.e., which criterion would it fall under. As you do this over and over, you will become so familiar with this process that your interviewing will become easier and much more effective. Finally, having a thorough and consistent process will support you emotionally as a clinician. Many clinicians, especially those who are new to this type of work, feel insecure and may even experience imposter syndrome themselves, particularly when working with autistics who camouflage. These clients have often been seen by other, sometimes more experienced, healthcare professionals, and those professionals may not have diagnosed autism. However, the fact that others have not diagnosed autism does not mean that it’s not there. It can be intimidating to disagree with prior evaluators, current therapists, and

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other professionals who are or have been involved in the client’s life. Relying on organized data provides the confidence to cope with these insecurities. Some cases can also feel quite overwhelming. Sometimes there is so much data, some of it conflicting or confusing, that you may feel overwhelmed about how best to make sense of it all. Using an organized system for diagnosis will make you feel much more prepared and comfortable in these situations, as well. (As a side note, one of my supervisors on internship, Dr. Richard Shulman, taught me that clients have a brilliant way of making us feel the way that they are feeling and, quite often, when we are overwhelmed by a case, the client themself is feeling overwhelmed by the world.)

General principles for organizing and integrating your data Scores are not the only type of data. A comprehensive understanding of the client’s history –​derived from the client, parents or other family members, collateral interviews, and a documentation review –​is the most important source of data when considering possible autism. Prioritize the client’s history above your own observations, rating scales, self-​report measures, and test scores. Rating scales and self-​report measures are simply ways to gather data, which can then be considered relative to the diagnostic criteria. The information gathered is far more important than any particular scores. Be aware of your countertransference. Sometimes clinicians have negative reactions when clients present for evaluation with the belief that they are autistic (or the parents’ belief that a child is autistic). The reaction can range from minimizing the client’s concerns to overtly dismissing them with disdain or annoyance, simply because the client is seeking a particular diagnosis. I have never seen any research suggesting that clients are less likely to be autistic simply because they believe they are. In fact, as discussed in the comments on countertransference in the Client Interview chapter, clients who believe they are autistic have often done a great deal of research and should be taken very seriously. Some of these clients have done so much research that they are more knowledgeable about autism than some clinicians! Who’s to say that an interested lay person can’t learn more about autism than a healthcare professional, especially nowadays, when there are so many excellent

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resources available? People aren’t LESS likely to be autistic just because they think they’re autistic. In addition, some clinicians have a persistent belief that autism is categorically bad. They are hesitant to diagnose it because they feel it would upset the client or the parents. If that resonates with you, I strongly urge you to continue to educate yourself about autism. Continue to do professional research. You may also want to speak with colleagues about your concerns. In addition, and most importantly, ask adult autistics about their experience of not being diagnosed (or being misdiagnosed) and then of being accurately diagnosed. You will find that the majority of them (understandably) felt distressed about not being diagnosed or being misdiagnosed, and they felt validated and supported when they were diagnosed with autism. If you were autistic, wouldn’t you want to know? Remember that data counts whether it was true in the past or if it is currently true. Autism can be diagnosed based on current symptoms or prior symptoms –​provided that the issues in question are (or were) significantly impairing. The diagnostic criteria indicate that symptoms must be present in the early developmental period. That being said, the DSM-​5-​TR also states that sometimes with adults it is very difficult, if not impossible, to get a detailed developmental history, and that in these cases a diagnosis of autism should not be withheld simply because of an “absence of developmental information.” This is important because symptoms may not fully manifest until later, or may later be masked. It is worth reading the eight or nine pages of supplemental information provided in the DSM-​5 regarding autism diagnosis, wherein the authors also state that older adults should not miss out on diagnosis simply because the clinician can’t get a collateral interview. Do not rule out autism just because you see some “non-​ autistic” traits or behaviors. Autistic individuals can and often do present differently in different settings. For example, they can look quite different at home and at school/​work, with more autistic traits showing up in either setting. One client may look more autistic at work/​school, where he has difficulty navigating the social milieu, whereas another client may look more autistic at home, where she feels comfortable indulging in her preference for pacing back

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and forth or repeatedly watching the same episode of a TV show. Camouflaging can also play an important role, and it is important to consider the fact that external observations often do not reflect the individual’s internal experience. Other variables, such as sensory responses and fluctuating anxiety, are also likely to affect how the client presents. Most importantly, remember that traits or behaviors that we code as “non-​autistic” (e.g., making typical eye contact, having a good sense of humor, having friends) do not mean that the client is not autistic. Just because someone can pay attention to something for an hour, it doesn’t mean they don’t have ADHD, right? And just because someone looks or feels peaceful for a few hours doesn’t rule out an anxiety disorder. Do not use just one example to satisfy a criterion. You should avoid blithely ticking off a criterion box with just one supporting example. For example, if after thorough digging, you find that all of your client’s nonverbal social skills are intact with the exception of their use of eye contact, consider whether social anxiety is the primary factor at play, rather than autism. Similarly, if the client likes to have their desk organized in a certain way but does not show other signs of a need for sameness, then they likely do not meet the criterion for inflexibility. We need to see that the client meets each criterion in a way that is meaningful. Do not use one example to satisfy multiple criteria. There may be times when you are unsure whether an example is a better fit for one criterion or another, and in those cases it may be tempting to include the example under both criteria. For example, it can sometimes be difficult to determine whether a repetitive behavior should fall under the repetitive motor/​speech/​use of objects criterion, or if it should be seen primarily as sensory-​craving. When in doubt, consult with knowledgeable colleagues and/​or examine other appropriate resources to determine how best to categorize your example. But don’t use the example for more than one of the diagnostic criteria, as this is not advised and will also make it appear that the data is scant and therefore unconvincing. The exception to this is when there are different aspects to the same behavior. For example, I recently consulted about an 18-​year-​old girl who brought certain rubber bands everywhere she went. Her attachment to these rubber bands was significant and could be counted as

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an intense interest (as an attachment to an unusual object). Separately, the girl regularly smelled the rubber bands, which falls under sensory craving. Remember Occam’s razor. As discussed in the introduction to this book, autistic individuals often accrue many diagnoses throughout their lives, some of which are accurate and some which are not. Theresa Regan highlights the importance of seeing the big picture in her book Understanding Autism in Adults and Aging Adults, using the parable of three blind men who come across an elephant, having never experienced one before. Each man touched and described just one part of the elephant; only by putting the pieces together could they understand the entire picture (ironically, this is a good example of context blindness on the part of the clinicians). The whole is more than the sum of its parts and it is essential to incorporate multiple perspectives to uncover the truth. If you see evidence of some autistic traits but decide not to diagnose autism, be clear about your reasons. Otherwise, this can create confusion and frustration for your client, their family, other care providers, and future evaluators. The team meeting report noted that Elena had “some social challenges with making and keeping friends and following and contributing to conversations appropriately.” It was noted that Elena “can be socially awkward and immature and needs to be mindful about filtering her thoughts and comments.” Elena’s self-​report at the time indicated that she had difficulty reading social cues and “knowing when she is bothering people or when to back off.” On a rating scale, Elena’s parents rated her social skills as significantly impaired (>99th percentile), and they rated Elena as significantly inflexible (>99th percentile). On the Autism Spectrum Rating Scales (ASRS), parent responses indicated concerns regarding unusual behaviors, as well as difficulty with social communication, self-​regulation, behavioral rigidity, sensory sensitivity, and attention. In addition, the teacher version of the ASRS was elevated on every subscale and indicated highly significant difficulty with social communication, self-​regulation, peer and adult socialization, and social/​emotional reciprocity, as well as unusual behaviors, atypical language, stereotypies, rigidity, and sensory sensitivity.The examiner declined to diagnose autism, however, simply stating that Elena’s “sensory issues, social skills difficulties, and rigidity appear to be better accounted for by her other mental health diagnoses.” No further explanation was offered.

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How I structure my decision-​m aking process I developed this approach, and numerous clinicians I know have adopted it with good success. This is just one example of a process that is organized, data-​based, and easy to consistently follow. I encourage you to try it and to adjust it to best suit your own needs. However you approach your decision-​ making process, use a structured and consistent process for organizing and synthesizing your data. The foundation of my decision-​making process is the Worksheet. I complete a Worksheet for every client for whom autism is a possibility. While you are getting used to this process, it may be a bit time-​consuming, but I promise that it gets easier and easier with practice. Additionally, completing the Worksheet will reduce your report-​writing time! First, I’ll give you a tour of the Worksheet, then I’ll explain the process. I will give you a lot of detail, but don’t worry; it’s all really quite simple. A tour of the Worksheet: The Worksheet consists of only two pages, helping you get to the point quickly. The first page is where you summarize any data that contributes to the DSM-​5-​TR autism criteria: Social and Communication 1. Reciprocity

• • • 2. Nonverbal communication

• • • 3. Relationships

• •

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Repetitive and Restricted Behaviors 1. Repetitive behavior

• • 2. Inflexibility

• • 3. Interests

• • 4. Sensory differences

• •

The second page is simply a list of traits/​symptoms/​concerns that do not fall under any of the autism categories but that very commonly co-​ occur with autism. I use the list below as a starter list for each client, and then simply delete any categories that are not relevant and add others that may be. For instance, if there are no concerns about language, delete the Language bullet. The most common categories included on page two are ADHD (since this sheet is solely for the clinician’s use, it’s shorter than writing attention and executive functioning), language, emotions (which can include anxiety, depression, intense emotions, or emotional dysregulation), medical symptoms, high need for context, and learning disorders. Of course, it is also very important to include strengths here. Other •

ADHD:

•

Language:

•

Emotions:

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•

Medical symptoms:

•

High need for context:

•

Learning disorders:

•

Strengths:

How to use the Worksheet: Step 1: Write the report, except for the summary and recommendations. This includes the Background Information, Rating Scales, Interviews, and Test Results sections. Step 2: Read through everything that you just wrote, in order. Anytime you read something that is relevant, add it to the Worksheet in the correct section. There is no need to write full sentences, as you will be the only person to see the Worksheet. The important thing is to get the key data into the correct category. At first, this may take you some time, particularly if you are still getting used to the criteria, but it will go very quickly before you know it. Once you are used to the process, you can complete a Worksheet in about 15–​20 minutes. The Worksheet becomes the template for your summary, so it will save you time later. Here are some examples of how to put data into the Worksheet: • In the Background section, if you wrote, “During preschool, Maddie had severe separation anxiety,” you would make a note, e.g., “PreK separation anxiety,” under the Emotions section of the Worksheet. • In the Background section, if you wrote, “Parents report that James does not greet others and requires cues to respond to greetings,” you would make a note of that in the Reciprocity section of the Worksheet. • In the Background section, if you wrote, “Samantha enjoys pacing back and forth whenever she is anxious, excited, or bored,” you would note that in the Repetitive section. • In the Background section, if you wrote, “Marcus’s teachers have always commented on his strong motivation and excellent behavior in the classroom,” you would put that in the Strengths section.

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• In the Behavioral Observations section, if you wrote, “Noah demonstrated highly restricted affect, with no change in affect in response to either praise or frustration,” you would note “restricted affect during testing” in the Nonverbal section of the Worksheet. • In the Behavioral Observations section, if you wrote, “Sally disregarded social bids and spoke at length about preferred topics,” you would indicate that you observed “limited reciprocity during testing” in the Reciprocity section. • In the Test Results section, if your client performed very poorly on a test of reading facial expressions, you would note that in the Nonverbal section. You may be thinking, “I’m going to rewrite my whole report onto the Worksheet?!?” No, you aren’t. I’ve done hundreds of these Worksheets, and in most cases, they fit onto two pages (I type them, then copy/​paste relevant information directly in the report documents). Anything you have written that does not fit into one of the categories and is not relevant to your conceptualization does not go on the Worksheet. It only includes the most relevant data (as regards the autism question), summarized and organized. Step 3: Now you have all of the information relevant to the possibility of autism diagnosis on two pages in an organized format. Take a look! Can you “check all of the boxes” in the Social/​Communication section and at least two out of four in the Repetitive/​Restricted section? If at this point you feel that the client meets criteria, skip to Step 5. Step 4: If you have organized all of your data and you do not have sufficient evidence for autism, then you are likely not going to diagnose. However, if your client meets most of the criteria and you still feel uncertain (i.e., if your clinical curiosity remains unsatisfied), then you have the option and the obligation to collect more data. The Worksheet will give you clarity about which criteria are not being met, and this is the time to circle back to the client, family members, or teachers to specifically inquire about possible symptoms related to those criteria. If you do this and still do not find evidence for autism, then you have done your due diligence to rule it out.

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Sample Worksheet Social and Communication 1. Reciprocity

•

•

•

•

Report cards: Various teachers raised concerns that it was “quite challenging” for Ava to interact well with other students in the class (for instance, reprimanding peers for no reason). She would tease other students “unceasingly,” even when the other students were upset. Report cards also noted “excessive talking” (and no other signs of hyperactivity/​impulsivity). Parents: Ava has difficulty engaging in social niceties and conversations. “It is as though she just can’t see how it’s done.” Conversation is “more one way” with little interest in listening to others. She does not understand how her behavior affects others (e.g., over-​texting someone or lecturing peers). Ava: Speaks at length about lifelong confusion in basic interactions. Has tried to learn by watching others or TV shows, but if she has no “internal reference” for a conversation she cannot engage. She also has been misunderstood as lacking empathy because she does not notice if someone else is struggling, and even when she does notice, “I didn’t know what I was supposed to say to them, so I wouldn’t really say anything. But I always felt sad that they were having a hard time.” With me: I had to interrupt to get a word in edgewise. Not at all reciprocal; when I spoke, it was as if I hadn’t said anything at all.

2. Nonverbal communication

• •

Parents & teacher: Ava is very hard for others to read; little change in facial expressions. Ava: “I’m always thinking, ‘How long do I have to look at someone?’ I can look at them if I figure out what I’m going to say first, but I can’t figure out what I’m going to say while I’m looking at someone, even if I like them.

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•

Sometimes I can see them moving their head to get back in my gaze, but I don’t want to, because then I can’t think about what they’re saying or what I’m trying to say.” With me: No change in affect with praise or frustration, hard to read. 5th percentile on testing of her ability to read nonverbal cues.

3. Relationships

•

• •

Parents: Persistent difficulty connecting and building deep relationships with peers. Has long felt excluded. “Many of the friendships were not close and/​or did not last.” Teacher: No particularly close friends, can unintentionally be one-​sided. Ava: “I want friends but it never seems to last. They all leave, and I don’t know why.”

Repetitive and Restricted Behaviors 1. Repetitive behavior

•

When younger, would walk around the playground in circles. Now paces back and forth and compulsively picks at skin.

2. Inflexibility

•

•

•

Report cards: Numerous notes from teachers about need for sameness, e.g., “Vehemently opposed to one aspect of a lesson,” “Hides under the desk if she does not want to engage in a task,” “Rigid about what goes where on her desk,” etc. Parents and teacher: Ava has a particularly “strong and inflexible sense of fairness,” and she gets “stuck” in her thinking “if she wants something to be a particular way.” “There is a rigidity in her thought process and in how she needs to say what she needs to say.” Ava: Describes “fixating” on certain thoughts, getting stuck in a loop. “It takes months sometimes to get out of them.”

How to organize and integrate your data  245 3. Interests

• •

Parents: Always had quirky interests, e.g., swamps, microbes, the development of textiles. Ava: Fan fiction, working on one story for three years, “it’s a constant thing for me.”

4. Sensory

•

Parents: Ava never knew when she was hungry or had to use the bathroom; very high pain tolerance.

•

Ava: “I’m cripplingly sensitive to sound.” Needed clock removed from my office for testing.

Step 5: Once you have determined that the client meets all three Social/​Communication criteria and at least two of the four Repetitive/​ Restricted criteria, take a step back and double-​check by asking yourself a series of questions: • Is there clinically significant impairment? This can be in any domain  –​social, emotional, adaptive life skills, etc. If the client came to see you for therapy or an evaluation, there is likely to be clinically significant impairment. • Does autism make sense for this client? Does it answer the referral questions? Is it the most likely explanation? • Is there another explanation that would make more sense? Have you considered other options to explain the symptoms/​concerns? For instance, are there other diagnoses, extenuating circumstances, and/​ or cultural factors that can better help you understand the client? • Will this diagnosis help everyone understand this client and help them understand themselves? • If you are not diagnosing autism, be very clear and specific about why not. The client deserves that clarity. While gathering information, it’s essential to focus on the details, e.g., understanding how often a behavior occurs, what drives it, where it occurs, what purpose it serves, etc.

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In contrast, while interpreting information to draw your conclusions, it is essential to focus less on those details and more on the big picture.

Step 6: Finally, it is essential to account for the concerns that you have noted in the Other section of the Worksheet. Autism often comes with ­related challenges, such as ADHD, anxiety, and depression, to name a few. This is where you will clarify those other concerns diagnostically.

Frequently asked questions • I’ve heard that girls/​women do not fit the DSM criteria, so it’s OK to rely solely on my clinical judgment for them. Is this true? No. I have not seen any research that suggests that the criteria do not “fit” females. Rather, the same sorts of symptoms/​traits can manifest differently in females than in males, so clinicians need to know what to look for. For instance, since you already read the chapter in Is This Autism? A Guide for Clinicians and Everyone Else about restricted interests, you know to make note of typical but intense interests, not just atypical interests. Clinicians also need to know how to look for these symptoms to better capture females (and others along the entire gender spectrum who have a less obvious presentation of autism). • Is it really worth going through all of this work when I can already tell that my client is autistic? In my opinion, yes. Remember, this process will keep you from ruling autism in or out too easily. It will provide you with the thorough and organized data that you will need in order to educate and convince your clients and their family members, as well as their educators and other healthcare professionals. Remember, these are people who may have been misdiagnosed and sorely misunderstood throughout their lives, and they deserve strong documentation so that they and others actually understand and believe this diagnosis. • Should I do the Worksheet by hand or on a computer? It doesn’t matter! This is where you get to experiment and see what

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works best for you. Some of the psychologists that I have trained print out blank sheets and hand write them, while others have a template on their computer and type in the details for each client. The advantage to typing is that you can then simply reformat it and clean it up a bit, and you will have a basis for your report summary, if you are a tester, or letter, if you are a therapist. The important thing is to simply figure out what works best for you and go with it! • I’m a therapist, so I see my clients for an hour a week, not for a comprehensive evaluation. Will this process still work for me? Yes. I recommend that you keep the Worksheet in your client’s file and after each session add any new relevant information that you discovered. • What if I cannot definitively rule autism in or out? This happens to all of us at times. When it does, communicate the reasons why you think autism is a real possibility and then clearly delineate the reasons why you are not diagnosing at this time. I have heard from countless autistic adults how incredibly frustrating it was to have one clinician after another say, “I just don’t know for sure” (if they considered autism at all), without clarifying the points for and against. It is important to be clear about this in order to fully support the client/​parent but also to provide them with helpful documentation in case they go to another provider in the future (which they likely will, sooner or later).

References and related reading American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th edition, text rev.). https://​doi.org/​10.1176/​appi.books.978089​ 0425​787 Duvall, S., Armstrong, K., Shahabuddin, A., Grantz, C., Fein, D., & Lord, C. (2021). A road map for identifying autism spectrum disorder: Recognizing and evaluating characteristics that should raise red or “pink” flags to guide accurate differential diagnosis. The Clinical Neuropsychologist, 36(5), 1172–​1207. https://​doi.org/​10.1080/​13854​046.2021.1921​276 Henderson, D., Wayland, S. C., & White, J. (2023). Is this autism? A guide for clinicians and everyone else. Routledge.

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Regan, T. (2021). Understanding autism in adults and aging adults: New insights for improving diagnosis and quality of life (2nd ed.). Indiego Publishing LLC. Shulman, C., Rice, C. E., Morrier, M. J., & Esler, A. (2020). The role of diagnostic instruments in dual and differential diagnosis in autism spectrum disorder across the lifespan. Child and Adolescent Psychiatric Clinics of North America, 29(2), 275–​299. https://​doi.org/​10.1016/​j.chc.2020.01.002

Chapter 11

How to have meaningful discussions about your findings

“I felt extremely heard out and taken seriously during this whole process, which is a breath of fresh air from past experiences and interactions.”

–​Reanna P. There is no single right way to have these conversations. This chapter offers some general principles, then discusses a method for structuring feedback conversations. Please note: This discussion focuses specifically on feedback regarding the possibility of autism but does not address a broader discussion of neuropsychological findings. For a more comprehensive discussion of feedback sessions, consider reading Feedback That Sticks: The Art of Effectively Communicating Neuropsychological Assessment Results by Karen Postal and Kira Armstrong. Why is the feedback session so important? As any seasoned (or even novice) clinician knows, how we give information to clients makes all the difference in the world. If it is done poorly, the client may feel judged, criticized, misunderstood, and/​or frightened. They could leave your office feeling overwhelmed, negative about themselves/​ their child, and/​or angry with you. They may even refute your findings altogether. However, if it is done well, the feedback session can be nothing short of a turning point in your client’s life. It can be the first time they fully understand themselves (or their child) and feel heard, understood, and validated by a healthcare professional. They can leave your office feeling hopeful, having a sense of control, and feeling energized to move forward.

DOI: 10.4324/9781003403838-12

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General principles for communicating the findings Set a neurodiversity-​affirmative tone. Regarding the overall tone of your message, if you are telling someone that they (or their child) are autistic, do not act as though you are delivering bad news. Strive to be a non-​anxious presence and, whenever possible, convey a sense of optimism. On a more micro level, pay close attention to your language. Reframe the medical/​symptom-​related way of thinking into language that is more affirming of neurodivergence. This is essential to show respect for your clients but also because you are a role model for your client and their family in how to talk and think about neurodiversity. Table 11.1 has some examples. Be inclusive. As Dr. Karen Postal says, “The more people who are in the room, the more likely it is that change will happen.” Ask the client, as early as the first appointment, whom they would like to

Table 11.1 Rewording ableist statements to be neurodiversity-​affirmative Ableist language

ND-​affirmative language

Your eye contact is poor.

Eye contact is uncomfortable (or effortful) for you (use the client’s words).You have had to work hard to meet other people’s need for eye contact, and you’ve been blamed when you did not succeed in meeting their needs.

Your child has a restricted interest.

Your child has an amazing ability to do a “deep dive” when she is interested in a topic. Her brain style lends itself to deeply focusing on one topic or activity for long periods of time. Some of history’s greatest minds have been characterized by this trait.

You don’t read social cues well.

You have difficulty reading the social cues of non-​ autistic people, and non-​autistics may have difficulty reading your cues. This is not a problem within you, but it is a problem for you.

Your child is rigid.

Your child’s brain does best with predictability and routine. He finds these things to be soothing and safe.

How to have meaningful discussions about your findings  251

include in the feedback session. Brainstorm with them to consider who in their life could benefit from having a deeper understanding of them. This can include immediate or extended family members, close friends, their therapist, or anyone else the client would like to invite. Sometimes, because of prior bad healthcare experiences, it helps the client to have a first feedback session alone, and then have the option for a second one with family. Provide structure. Most people come to the feedback session with a mixture of emotions. They may be excited to hear your findings. They may also be anxious; some will be anxious about what you will diagnose, and others will be anxious about what you won’t diagnose. The NUTS acronym, coined by Dr. Sonia Lupien, is a reminder that people tend to feel stressed in situations that are Novel, Unpredictable, Threatening, and/​or in which they feel a low Sense of control. One could argue that getting feedback from a mental health provider ticks all of these boxes! You can immediately begin to ease your clients’ anxiety by clearly communicating the structure of the session, in order to make it more predictable. I have also found that planning and structuring the session lowers the anxiety that some clinicians experience when giving feedback. Of course, it is just as important to be flexible, paying attention to the clients’ needs as they arise in the moment. Set a collaborative tone. Make it clear that the session is meant to be a collaborative discussion, rather than simply you making pronouncements. Let the client/​parents know that, while you hope your findings will resonate with them, it is important for them to communicate with you if they disagree or are unsure about your conclusions. Ideally, the feedback session is an engaging conversation for all, not a lecture by one. Know your audience. Whenever possible, use your client’s language to describe areas of difficulty. Consider your clients’/​parents’ concerns, theories, fears, and level of insight. Adjust your vocabulary to their level. Pay attention to their use of humor and match it. Look for cues that they are fatiguing or losing attention, and adjust your plan to meet their needs. Some families want as much information as possible, prefer a rapid pace, and have high insight into their challenges. Other families need a much slower pace, can only take in a limited amount of information, and are fragile when facing new information. Pay attention to their cues and adjust your discussion accordingly.

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Clarify what will be provided in writing (and when). We provide a great deal of valuable information to clients/​parents during these sessions, which can be overwhelming. While some people prefer to take notes because it helps them attend to and process the information, others may not understand that they will be receiving a written report and may feel that they have to write everything down, which can take their attention away from the conversation. Ideally, clients will be fully present for these conversations, so remind them at the beginning of the session that everything discussed will be included in a written report. Also give them a reasonable expectation for when they’ll receive the report. Challenges before strengths, or after? There is no consensus about whether it is better to discuss strengths first or challenges first, and each clinician needs to experiment and determine what feels right for them. After briefly starting on a positive note, I prefer to review the areas of difficulty first, leaving the strengths for last. I have noticed that when I review strengths first, the client/​parent is only partly listening, because they are waiting for the “but.” When discussing this with other clinicians, I advise them, “Picture yourself going in to your boss for your annual review. If they start the meeting with, ‘You always arrive on time, you get your paperwork done efficiently, and you get along well with your coworkers,’ wouldn’t there be a part of you just waiting for the ‘but’?” This is even more relevant with feedback sessions, because your client(s) are fully expecting some conclusion about problem areas. They are anxious to hear your answer to their referral questions. I find that addressing the challenges first allows me to fully engage the clients, and I love ending on the positive note of discussing their many strengths. Some clinicians prefer to highlight strengths at the beginning of the discussion, then transitioning to the areas of challenge/​concern, before touching back on the strengths again at the end of the session, to ensure that these important aspects of the client’s profile are emphasized. Avoid jargon, test names, and scores. Individual test scores have little meaning in and of themselves. What is important is the pattern of data and the meaning derived from that pattern. Moreover, reviewing every test score is often overwhelming to clients and makes them vulnerable to focusing on irrelevant details. Though it will sometimes make

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sense to discuss one or two scores during a feedback session in order to make a specific point, it is generally advisable to stick to a narrative about patterns and avoid specific scores that may be misleading or overwhelming to clients. Use visual aids. We clinicians review so much information during these sessions, and visual aids can add structure and help the client attend to and take in the information. Visual aids can encourage everyone to focus on the main points and can make it less likely that you will get bogged down in minor details. It is also worth noting that many clients and parents have uneven attention or executive functioning (whether due to ADHD, autism, anxiety, sleep, depression, etc.), which makes visual cues all the more helpful. Visual aids can take many forms. When meeting with adolescents, for example, you might provide a one-​page summary of their most salient strengths and challenges, as well as just a few of your most important recommendations. When meeting with parents in person, depending on the findings, you might provide a one-​page summary of the diagnostic criteria for autism. When you have the feedback session remotely, you can provide slides summarizing key findings (and these can be emailed to the client following the meeting). These aids can be used to guide the conversation in an organized but flexible manner, without overwhelming the client with too much information at once. There is no single right way to do this, but a visual aid will help your client take in your findings, and the act of creating a brief summary will also help you fine tune your ideas so you will be clear and organized about your take-​home message. Specific test items can also be powerful visual aids. For instance, I frequently show clients/​ parents specific items from the Social Language Development Test, ACS Affect Naming, or the Roberts Apperception Test, and talk about how the client interpreted those items compared to how most people interpret them. These examples can be quite eye-​opening for the clients, parents, spouses, or other clinicians involved. Communicate your confidence level. If you are highly confident about your findings, be clear about that. Many people with a less obvious presentation of autism are vulnerable to autistic imposter syndrome –​they may think, “I’m really [smart/​successful/​social/​funny/​

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etc.], so maybe I’m not really autistic.” When you communicate confidence in your findings, it can really help them with this. Alternatively, if you are not confident about your findings, i.e., if you feel that the client meets many of the criteria for autism but not all, then it’s important to discuss this with the client/​parents as well. You can take time during the feedback session to probe more for criteria where you feel you have insufficient data, and you can discuss with the client/​family what feels right to them. Listen carefully to what they say, and remember not to speak to clients/​parents as though you are the ultimate authority on them/​their child. Let moments land. During important conversations, it is always a good idea to allow pauses, to enable everyone to check in with themselves and each other. This is particularly true when working with neurodivergent individuals, who often have slower processing speed and really need time to absorb information and emotions. Regularly check in with your clients to see what is resonating and what is not. When things resonate, it often brings up a variety of emotions and may even elicit new, relevant information. Quite frequently, during a feedback session, the client or parents say, “I didn’t tell you about this because I didn’t think it mattered, but….” Alternatively, if something does not resonate, or if they overtly disagree with a point, it is important to spend time discussing that in a non-​defensive manner. Validate all emotions. Clients and parents often have a mix of feelings. One really common reaction to an autism diagnosis is relief. Clients and parents may feel uncomfortable about feeling relieved, but it can feel good to finally get an explanation for something that has been confusing for years. There can also be disappointment or anger that the diagnosis was missed by prior clinicians or by one’s parents. It’s OK and understandable to be frustrated or angry about misdiagnoses. Try to explain how frequently this happens, so they know it was not just them or their healthcare professionals. Parents often feel guilty that they were not aware that their child is autistic. This is not rational, of course, but parent guilt rarely is. Try to help them see that feeling guilty doesn’t mean that they are guilty. Validate all of these emotions, because clients need to know that someone else sees, understands, and accepts their experience. It’s a simple but powerful way to help someone with their emotions.

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“Reading all of the ‘bad’ stuff was extremely validating since I had been told for 20 years that I had depression and anxiety, yet despite some improvement I still had all of these limitations. I felt like a failure, especially since I used to be a counselor myself and have deep psychological knowledge. So when all of those ‘failures’ were literally spelled out for me in my report as the traits of a neurological condition I finally felt validated and no longer felt the need to try to be ‘normal’ or mask. It freed me to be myself !” –​Angela P. Be non-​defensive if the client disagrees with you. I have found that, when I employ a thorough and collaborative process, when I base my findings on data that is well organized and coherent, and when I educate clients about autism, the overwhelming majority of them agree with the diagnosis. In one survey of prior clients who had daughters diagnosed by me (often unexpectedly), 97% of the parents agreed with the diagnosis when asked three months to five years later. Still, occasionally there are clients or parents who do not agree. When this happens, try to understand their point of view. For instance, if they are stuck on an outdated perception of autistic people as lacking empathy or humor, strive to educate them in order to expand their understanding. Direct them to writings by autistic authors, such as Eric Michael Garcia, Devon Price, or Annie Kotowicz. Whatever the reason (and there are many), try to understand the client’s/​parents’ perspectives and collaborate with them; after all, we all have the same goal.

Connecting culture Cultural sensitivity and rapport building are just as important at the end of an evaluation as they are in the beginning. At the beginning, they were needed to help the family share; at the end, they are necessary to help the family listen. Following are some examples of potential vulnerabilities regarding culture and the feedback session, as well as Jamell’s recommendations for each. Some family members may have concerns that professionals are profiling their child or grandchild. To manage this, explicitly tell the client/​parent that this is a collaborative process, not a unilateral decision. Give them a sense of agency explicitly, but also implicitly, by genuinely listening to and respecting their point of view. Also make it

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clear that your opinion is based on data, not vague clinical intuition, and that much of the data came from interviews with them. Some family members are concerned that the child will be given a stigmatizing label that will be public and lifelong. Have an open discussion about this concern. For instance, remind the family that this information can remain private, that they do not need to disclose it indiscriminately, and that autism is a less stigmatizing label than difficult, self-​centered, etc. In some cultures, families have significant relationships with community members, such as pastors, and it is crucial to include these influencers in meetings, rather than expecting the family to pass the information on to them. Determine who these influencers are and support the family if they choose to include them. Be aware that, at the feedback session, the power balance has shifted even more towards the authority of the clinician. While you do want the client to view you as a knowledgeable professional, it is just as important for them to see you as a respectful collaborator. One way to achieve this is to invite them to call you by your first name. Some clients may feel uncomfortable or reluctant to tell you if they disagree with you. This can be because they’ve had negative interactions with healthcare professionals in the past, or because in their culture it is considered disrespectful to disagree with a doctor (or other professional). Jamell recommends that you explicitly ask your clients to be honest if they disagree with you. Let them know that disagreements are not unusual and that you would like the opportunity to explore them, so that all involved can gain a greater understanding of the client. As the meeting progresses, do regular check-​ins, explicitly ask them to give their opinion about what you’ve discussed, and encourage them to ask questions. If they do disagree with you, validate their feelings, be respectful, be flexible, and take their perspective seriously. Try to find some common ground. Admit that you are not the ultimate expert on them or their child. When your conclusions are inconsistent with the family’s frame of reference, it is essential to first fully understand their framework, and then work together to help them broaden their understanding to include alternative interpretations. This sort of work does not happen in one conversation. Ideally you can help them find a clinician (if not you) with

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whom to form a long-​term relationship to consider these issues within the context of a trusting, safe relationship. Every family has their own way of thinking about autism, and sometimes this is influenced by their culture. For instance, many Americans used to believe that autism was caused by cold or distant mothers, and many Americans still believe that autism is a disease or disorder caused by vaccines. It is essential to understand your clients’ framework, and how this is influenced by their culture. For example, some cultures view any differences or diagnoses as bringing shame onto the family or as punishment by God for a past transgression. To make this even more complex, many families include people of different cultural backgrounds, so there may be entirely different and at times opposing frameworks. At these times, it is essential for the clinician to understand and validate each person’s experience in the context of their cultural background. Finally, if you have overlapping experiences, use them. Intersecting cultures of the clinician and family may be a bridge for openness and acceptance. Shared experiences can have a powerful and positive influence on the discussion. “When I have made the decision as a clinician to disclose that I am also a parent, I see the walls disappear. Because until then, I’m just a part of the very system they don’t want to deal with; the system that’s trying to label them. When I decide there is a clinical purpose for me to share my own status of being a parent of a child with autism, all of a sudden you can see this relief, ‘You’ve been through this; You get this; You understand this. Now, let me ask you some questions.’ I’ve actually found that more powerful than anything else I can do clinically –​my role as a Black parent of a child with autism. There’s something to that connection with other people that look like them to build that trust.” –​A., Black clinical social worker

Feedback sessions: One approach Allow time for a genuine conversation. If possible, allocate two hours for a feedback session. This will allow plenty of time to convey and discuss information and without feeling rushed. When

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providing feedback to children or adolescents, plan for 30 to 60 minutes, depending on the age, level of intellectual functioning, attention span, and level of insight. Explain the structure at the beginning of the session. First give the clients an overview of what to expect during the feedback session (remember that increasing predictability decreases stress). For example, you might say, “I’m going to start by addressing your concerns, the reasons you came to me for this evaluation. Then I’d like to discuss your (or your child’s) many strengths. After we have clarity about both challenges and strengths, we will discuss the recommendations.” Don’t delay the punchline. Whether you choose to dive right into the client’s challenges or to provide an overview of strengths first, make sure that you get to the “bottom line” fairly quickly. This will ease their anxiety/​curiosity and leave plenty of time to fully explain your findings and process their reactions. Of course, how you do this will vary from client to client, but here is an example of a slide (because the feedback session was remote) for a 28-​year-​old client who requested an evaluation because, after a lifetime of anxiety and depression, she wondered if she was autistic: Conclusions: • You have been incredibly misunderstood throughout your entire life. • You were born with a different type of nervous system. • You are autistic. • Trying to live in this non-​autistic world is what is driving your anxiety and depression. Review the diagnostic criteria and how they apply to your client. Most people know nothing about autism or have a very outdated, stereotyped view of it. They often think of Raymond from Rain Man, Sheldon from Big Bang Theory, or someone they know who has “profound” autism. Because of this, it is important to take time during the feedback session to educate them about autism. First provide an

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overview from a neurodiversity paradigm, explaining that there is nothing inherently wrong with an autistic person, but that they have many challenges because they have to function in a world that is not designed for them. Then consider walking the client through the DSM or ICD diagnostic criteria for autism. Those criteria are not written in a neurodiversity-​affirmative way, but they do provide the agreed-​upon structure for the diagnosis, and it is very important to convey to your clients that this conclusion is based on data, not on a gut feeling or magical psychological mumbo-​jumbo. I find that it is incredibly helpful to discuss each criterion with the clients, reviewing the criterion itself as well as how they meet it. I use the Worksheet as the guide for this part of the conversation, so I am ready with specific examples from the client’s history and testing. This exercise educates the client about autism and also helps them understand how you reached your conclusions. Those who were hoping for an autism diagnosis find this process incredibly validating. For those who are surprised by or negative about the diagnosis, this process almost always helps them to understand and accept it. “What I needed was not just someone affirming my own beliefs, but something that I could confidently accept as thorough and factual, so that I had no doubts in representing myself as autistic.” –​Drew R. Discuss other concerns. After going through the diagnostic criteria and allowing time for the clients’ questions, then describe other challenges they are facing. You can offer something along the lines of, “Some of your concerns have not yet been addressed. Let’s now discuss other things that you (or your child) have struggled with. These are not part of the diagnostic criteria for autism, but they are related to autism and are very common in autistics.” Then discuss anything on the Other Issues list from the Worksheet. This may include ADHD, anxiety, depression, difficulty using context, gastrointestinal issues, etc. The aim here is to help the client/​parents understand that these issues are not separate or unrelated, but rather that they are co-​occurring conditions common in autistic individuals. This part of the discussion connects the separate pieces for the client, helping them see how their various struggles fit together and can be understood through the lens of autism.

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Highlight strengths and areas of intact functioning. Make sure to spend time talking about the client’s strengths and areas of intact functioning. I typically first highlight cognitive strengths, such as intellectual functioning, language, visuospatial skills, memory, etc., and then discuss academic skills that are intact or a strength. Finally, I review a list of personality and character strengths. This can include a wide variety of traits and skills, such as kindness, humor, work ethic, empathy, musical talent, athletic skill, ability to focus on topics of interest, concern for social justice –​the possibilities are endless. You have learned about their strengths through the testing but also by asking everyone –​the client, parents, teachers, therapist, etc. –​what they see as the client’s strengths. When you complete this part of the discussion, always ask the client/​parents if you forgot any major strengths, to give them another opportunity to add to the list. Discuss recommendations. Once there is clarity about the challenges and strengths, it’s time to discuss recommendations. Please refer to the next chapter, Recommendations, for details regarding this part of the discussion.

Frequently asked questions • What do I do if the parents agree with my autism diagnosis but do not want to tell their child? With a few very rare exceptions, I strongly encourage parents to tell their child that they are autistic. Children (regardless of age) are aware that they struggle. They have a sense of what comes easily to them and what doesn’t. If we do not provide them with nonjudgmental language to describe their challenges, they will likely use more negative language. “I was born with a different kind of brain, and it’s called autism” is infinitely better than “I’m stupid,” “I’m not likeable,” “I’m weird,” “I’m bad,” or the countless other irrational things that kids say to themselves when they don’t have more appropriate understanding and language. Once they understand that it’s not their fault, kids/​teens/​adults can stop blaming themselves, practice self-​compassion, find community, and start the healing process. Furthermore, we all want our children to become strong self-​ advocates as they mature, particularly our kids who have challenges. The first step to self-​advocacy is insight. Teaching them what kind of nervous system they have provides them with that self-​awareness.

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It may also help to remind parents that secrets often imply shame or embarrassment, and it is of the utmost importance that the child does not think that their parents are ashamed of, or embarrassed about them. Finally, it is simply a matter of basic respect. After all, if I knew something important about you, wouldn’t you want me to tell you? “My suggestion would be to not hide it from the child (or to make it clear early on). I was diagnosed in third grade, and while I started suspecting something was up in high school, nobody told me about my diagnosis until I was doing college applications. It was really frustrating to have all the teachers treat me differently, without knowing why. It really hit me all at once after my dad told me about it, why so many things were harder for me and why I got ‘special treatment’ on tests and such. I realized that my parents knew all along, but they never really made it clear to me that ‘this is why’.” –​Angie L.

• What about when the client or parents want or expect a diagnosis of autism and don’t get it? It is essential to respect our clients’ views of themselves and parents’ perspectives on their children; this is a significant piece of the data when considering the possibility of an autism diagnosis. While clients/​parents are often correct when they feel that they or their children are autistic, at other times there are other explanations for their profile of strengths and challenges. At such times, it’s essential to explain our reasoning in detail and to thoroughly review the diagnostic criteria explaining which criteria they don’t meet and why. It is also important to present an alternate explanation for the client’s symptoms/​traits/​experiences. • Do you discuss your findings with the other professionals involved? As long as you have the client’s permission, welcome the opportunity to help other professionals better understand the client through the nonjudgmental lens of autism. If another healthcare professional disagrees with the diagnosis, respectfully ask them to explain which criteria the client does not meet. Often, the clinician is basing their conclusion more on gut feelings, an outdated understanding of autism, or solely on their own experience of the client (rather than understanding what the client is like in a wider variety of interactions). You can try to guide the discussion using the diagnostic criteria, and you will be prepared because of the Worksheet.

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• Should I offer feedback directly to my child/​adolescent clients? Child/​adolescent clients have the right to know the results of an evaluation. In some cases, this is best achieved through a series of conversations with the parents. In other cases, it is helpful for the child or adolescent to meet directly with the clinician. Depending on the situation, you might conduct this appointment one-​on-​one, so the student has the opportunity to ask questions that might not come up if their parents are present. You can then bring the parents in at the end of the meeting and briefly review what was discussed, so that they are prepared to address any follow-​up questions that may arise. • Should I provide written documentation to the client? Yes! I have heard from many (particularly adult) autistics that they were informally told by a clinician that they are autistic but were never given any formal documentation. If they lost contact with that clinician, then they had no proof of diagnosis, which made them vulnerable to misdiagnosis by other healthcare professionals. For those of you who perform assessments and write in-​depth reports, it is out of the scope of this book to provide you with detailed guidance (and, of course, there is no single right way to write a report), except to say that it is important that your report details exactly how your client meets the DSM-​5-​TR criteria and how they could be misunderstood as not being autistic. For those of you who see clients in therapy, consider writing a letter for the client, stating that you have diagnosed them with autism spectrum disorder, and specifying which criteria they meet. Consider including a paragraph explaining (for the sake of other healthcare professionals) the ways in which it would be easy for them to be misunderstood as non-​ autistic. Finally, particularly for older adolescent or adult clients, also consider documenting prior diagnoses that you do or do not agree with (e.g., if the client had a prior diagnosis of oppositional defiant disorder or a personality disorder). When you disagree with a prior diagnosis, explicitly state why.

References and related reading American Psychiatric Association. (2022). Diagnostic and statistical manual of mental disorders (5th ed., text rev.). https://​doi.org/​10.1176/​appi.books.978089​ 0425​787

How to have meaningful discussions about your findings  263 Bernier, A. S., & McCrimmon, A. W. (2021). Attitudes and perceptions of Muslim parents toward their children with autism: A systematic review. Review Journal of Autism and Developmental Disorders, 9, 320–​333. https://​doi. org/​10.1007/​s40​489-​021-​00256-​9 Duvall, S., Armstrong, K., Shahabuddin, A., Grantz, C., Fein, D., & Lord, C. (2021). A road map for identifying autism spectrum disorder: Recognizing and evaluating characteristics that should raise red or “pink” flags to guide accurate differential diagnosis. The Clinical Neuropsychologist, 36(5), 1172–​1207. https://​doi.org/​10.1080/​13854​046.2021.1921​276 Ecker, J. (2010). Cultural belief systems in autism and the effects on families [Bachelor’s thesis, Barnard College]. https://​doi.org/​10.7916/​D8TX3​NCQ Jegatheesan, B., Miller, P. J., & Fowler, S. A. (2010). Autism from a religious perspective: A study of parental beliefs in South Asian Muslim immigrant families. Focus on Autism and Other Developmental Disabilities, 25(2), 98–​109. https://​ doi.org/​10.1177/​10883​5761​0361​344 Lupien, S. (2017, May 2). Recipe for stress. Centre for Studies on Human Stress (CSHS). https://​huma​nstr​ess.ca/​str​ess/​und​erst​and-​your-​str​ess/​sour​ces-​of-​ str​ess/​ Monteiro, M. J., & Stegall, S. (2018). Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition (MIGDAS-​2). Western Psychological Services. Pearson, J. N., Stewart-​Ginsburg, J. H., Malone, K., & Avent Harris, J. R. (2022). Faith and FACES: Black parents’ perceptions of autism, faith, and coping. Exceptional Children, 88(3), 316–​334. https://​doi.org/​10.1177/​ 001440​2921​1034​152 Postal, K. S., & Armstrong, K. (2013). Feedback that sticks: The art of effectively communicating neuropsychological assessment results (1st ed.). Oxford University Press. Riany, Y. E., Cuskelly, M., & Meredith, P. (2016). Cultural beliefs about autism in Indonesia. International Journal of Disability, Development and Education, 63(6), 623–​640. https://​doi.org/​10.1080/​10349​12X.2016.1142​069 Sakai, C., Mulé, C., LeClair, A., Chang, F., Sliwinski, S., Yau, Y., & Freund, K. M. (2019). Parent and provider perspectives on the diagnosis and management of autism in a Chinese immigrant population. Journal of Developmental and Behavioral Pediatrics: JDBP, 40(4), 257–​265. https://​doi.org/​10.1097/​ DBP.00000​0000​0000​660 Sharp, J. (2020, October 5) How to conduct a knockout feedback session–​with Dr. Karen Postal (No. 147) [Audio podcast episode]. In The testing psychologist. www.the​test​ingp​sych​olog​ist.com/​147-​how-​to-​cond​uct-​a-​knock​out-​feedb​ ack-​sess​ion-​w-​dr-​karen-​pos​tal/​how-​to-​cond​uct-​a-​knock​out-​feedb​ack-​sess​ ion-​w_​dr-​karen-​pos​tal/​ Someki, F., Torii, M., Brooks, P. J., Koeda, T., & Gillespie-​Lynch, K. (2018). Stigma associated with autism among college students in Japan and the

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United States: An online training study. Research in Developmental Disabilities, 76, 88–​98. https://​doi.org/​10.1016/​j.ridd.2018.02.016 Van Patten, R., & Bellone, J. (2019, April 1). The art and science of delivering feedback–​ with Dr. Karen Postal (No. 17) [Audio podcast episode]. In Navigating neuropsychology. www.navne​uro.com/​17-​the-​art-​and-​scie​nce-​of-​del​ iver​ing-​feedb​ack-​with-​dr-​karen-​pos​tal/​ Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental and Behavioral Pediatrics: JDBP, 35(8), 522–​532. https://​doi.org/​10.1097/​ DBP.00000​0000​0000​091

Chapter 12

Recommendations

This chapter offers guiding principles rather than specific recommendations, which, of course, should be customized for each client. Entire books can be (and have been) written on how to help, and I cannot hope to address all of the possibilities here with the complexity and nuance they deserve. Historically, recommendations have been aimed at making the autistic person look less autistic, e.g., to stim less, engage in more conversation, or to make more eye contact. In contrast, the general principles that are offered here are based on three overriding goals: 1. To help the autistic individual, their family, and important people in their lives understand the autistic person through the lens of neurodiversity, not through the lens of a disorder. 2. To help the autistic individual feel safe. When people feel safe, their abilities (e.g., executive functioning skills and social skills) improve. Without a sense of safety, nothing else matters. 3. Rather than trying to make the autistic person look less autistic, the goal is to collaborate with the individual to develop tools and strategies for living an authentic life as an autistic person in a world dominated by non-​autistic people. The goal is for the autistic person to have a sense of well-​being, competence, and hope for their future. There are no recommendations for specific interventions in this chapter, for a number of reasons, including:

DOI: 10.4324/9781003403838-13

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• Some interventions are changing. For example, there was a time when ABA was the first (or only) intervention recommended for autistic individuals. Despite the good intentions of ABA providers, countless autistic adults have experienced ABA as traumatic. My sense is that the field of ABA has begun to adapt to this feedback and refine its approach. • Some interventions have no research (or are difficult to research) but may be helpful. For instance, Sarah has practiced Relationship Development Intervention (RDI) for many years, and she has changed the lives of countless families by helping parents understand their children below the surface of behavior. It is very difficult to do research on this intervention because the approach must be highly individualized for each person. Just because something has not yet been adequately researched does not mean that it cannot be effective. • As with non-​autistics, the intervention is only as effective as the provider. The best clinicians apply not just one intervention but flexibly use aspects of different approaches to best meet the needs of their clients. Effective clinicians know that the “right” approach changes from client to client and also changes over time for each client. • Each autistic individual has unique challenges, strengths, goals, and preferences, which will all affect intervention. There simply is no one-​size-​fits-​all approach to any type of wellness, and this is particularly true for people who tend to be complex and extremely diverse.

Guiding principles Change the internal narrative. Self-​understanding is one of the most important gifts we can offer our clients, as it can support their well-​being and provide a foundation for self-​advocacy and healthy relationships. Ideally, healthcare professionals help their clients develop self-​ knowledge that is authentic and nonjudgmental. Many autistics, particularly those who are identified later in life, have developed a negative narrative about themselves. Modifying this narrative to see themselves through the nonjudgmental lens of neurodivergence can be life-​changing. So many autistics have expressed how this knowledge

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helped them become compassionate toward themselves for the first time in their lives. In addition to self-​compassion, understanding their neurodivergence gives people a framework and language to think and talk about their experience and their challenges. Self-​knowledge also gives people the power to change and adapt. For instance, if an autistic individual comes to understand that they are vulnerable to getting stuck in their thinking, they can then learn to recognize when this is happening, when it is getting in the way, when it is helpful, etc., and they can then choose when and how to make adjustments. To change the internal narrative, it is absolutely essential to use neurodiversity-​affirmative language, and healthcare professionals must model this for their clients. Changing the internal narrative makes room for self-​compassion Aaron, a 35-​year-​old IT professional, was exhausted all the time. As he and I talked, it became clear that Aaron did not listen to his body and instead forced himself to adhere to arbitrary external standards. For example, Aaron made himself get up early in the morning even though he preferred the quiet nighttime hours with less sensory input and fewer social demands. His job hours were entirely flexible, but Aaron considered himself “lazy” for wanting to start work later in the day. Aaron also forced himself to run after work, even though he hated it, and he persistently berated himself for needing to recover after his work day. Aaron needed, deserved, and benefitted from validation. He literally cried with relief when he was given “permission” to listen to his body and change his internal narrative. Not only did that change allow Aaron to access self-​compassion, but he also adjusted his work hours to later in the day and he gave himself permission to recover from his day more quickly, by spending his after-​work hours resting without self-​blame, rather than spending all evening beating himself up.

From the experts: Reflections on changing the internal narrative after diagnosis

“Instead of perceiving myself as a failure, or broken, or not living up to the standards of my peers, I realized that I accomplished so much, without knowing [that I was autistic], without accommodations, without even understanding my

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struggles, or the totality of who I was. So I went from confusion and internalized ableism and shame, to pride and understanding and contentment with myself with grace, beyond grace, and much more patience with myself.” –​Asiatu Lawoyin

“Learning that I have autism was like seeing myself clearly for the first time. It was a relief. I could see my strengths and weaknesses as part of a pattern that was at least partially hardwired into me, as opposed to personal failures. Since then, I’ve been able to treat myself with compassion.” –​Kathy D.



“I was able to be kinder to myself and sort of understand, ‘Well, actually, that’s how your brain works. That’s not a result of you being bad. That’s not a result of you not caring about other people. It’s a result of just brain chemistry, brain neurology.’ ” –​Lauren O.



“There’s a standard that I held myself to that was not supporting my brain or body or well-​being. Since getting the diagnosis, I am much better able to advocate for my needs and set up my life in a way that really works for me.” –​Laura Z. Weldon

Change the narratives of others. When the diagnosis is new, important people in the autistic’s life may need help adjusting their internal narrative about the meaning and purpose of the autistic individual’s behaviors. Encourage family, teachers, and others to try to understand how the autistic’s internal experience affects their behavior, sense of safety, ability to meet expectations, etc. Help them understand that people can have uneven profiles; just because someone has a high IQ or is good at math doesn’t mean that they can easily navigate the practical aspects of daily life. For instance, if the individual is persistently quiet or withdrawn at family functions, it is not because they are sullen or rude; instead, it may be because they simply do not have the social energy or ability to cope with large gatherings. Changing the internal narrative of other people in the autistic’s life is an essential precursor to changing their expectations and interactions, so they can have a healthier, more positive, and more productive relationship with the autistic person. Changing internal narratives is not accomplished in one conversation. It requires ongoing, open dialogue between all concerned. When the autistic individual is a child, this dialogue should include everyone

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involved with them –​family members, teachers, healthcare professionals, childcare providers, etc. When the autistic person is an adolescent or adult, they should have a sense of control over when and how their autism is disclosed and discussed. Finally, when educating individuals who live or work with autistics, always model the use of neurodiversity-​affirming language, e.g., saying trait or behavior instead of symptom. Be careful about using language that blames the autistic or assumes that the non-​autistic way of interacting is inherently better. For example, instead of saying “Molly makes poor eye contact,” say “Molly finds eye contact uncomfortable, and she has difficulty meeting our (non-​autistic) preference for eye contact.” Changing the narrative changes expectations Ciara, an autistic 5th grader, persistently played with her barrettes in class. Her teacher was bothered by this behavior and repeatedly insisted that Ciara stop. Once the teacher understood the importance of the behavior and the purpose it served for Ciara, she was more flexible. After her autism diagnosis, Ariel began to talk more about her inner experience, and particularly about things she found stressful. Her mother was surprised when Ariel confided, “I love Christmas morning, except for the stressful part.” She asked Ariel, “What could possibly be stressful on Christmas morning?” Ariel replied, “When I open presents I have to remember to smile and look happy, or people get upset with me!” Ariel clarified that she feels this way even when she absolutely loves the gift. Once her mother knew this, she helped the rest of the family understand that Ariel does not show her emotions the way most people do, nor should she have to.

Manage other people’s anxiety. Anxiety is contagious, and the autistic individual’s loved ones are encouraged to be, insofar as possible, a non-​anxious presence. The goal is not for the autistic person to change who they are in order to help ameliorate other people’s anxiety. Don’t recommend therapy for a child in an attempt to treat the anxiety their family members are experiencing (although some autistics do need to seek out therapy to learn how to deal with their or their family’s anxiety). Instead, recommend ways for the parents of your clients to access

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ongoing education and support. This can include online courses and communities, as well as live, local opportunities to connect with other parents. I recently met with Noah, an autistic 24-​year-​old, and his highly supportive parents. At the time, Noah was a successful graduate student with a few close friends. While the family generally enjoyed positive relationships and open communication, there was some conflict during this meeting. Noah did not feel that he was anxious (I agreed), but his parents aggressively advocated for him to engage in psychotherapy. Every time Noah declined their request, they repeated their (vague) concerns about his well-​being. Eventually, the parents explicitly asked me to convince Noah to go to therapy. I responded to them, “I can’t recommend that Noah goes to therapy to treat your anxiety. Is it possible that you could benefit from therapy?” After a tense few seconds, the parents laughed with recognition and agreed.

Create safe spaces. Ideally, each individual will feel safe in all of their environments, and this is particularly important at home and in healthcare settings. Only when we feel safe can we engage with others, take in information, make effective decisions, be productive, and have a sense of well-​being. When we do not feel safe, when we are in fight, flight, or freeze mode, we become hypervigilant to perceived threat and have great difficulty paying attention to anything else. In this state, our executive functioning skills and our social engagement systems are not online. Think about it: If you are facing a hungry tiger, could you learn math? Engage in social chitchat? Plan a big project? Care that your friend is feeling sad? No. When you are facing a hungry tiger (or any other perceived threat), your body literally goes into survival mode, and all other skills are offline. But, you say, most of us aren’t facing tigers on a regular basis! That is true, but our bodies do not always know the difference between a real threat and a perceived one. For example, I recently saw a spider in my bedroom. Cognitively, I knew that the spider did not pose a threat to my life or even my well-​being. However, my body reacted to this perceived threat with an escalated heart rate, an inability to take my eyes off of the

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spider, and an inability to continue the pleasant conversation I had just been having with my daughter. I could not focus on anything else until the perceived threat was managed. While many people can relate to my terrifying experience of that (itty bitty) spider, autistic people are particularly vulnerable to perceiving threat in situations that feel safe to non-​autistics. For instance, countless autistic students feel overwhelmed and unsafe at school, even when no one is actively being mean to them. Any attempts to improve their attention, executive functioning, social skills, etc. will at best fail and at worst only add to their stress. Creating a sense of safety is, therefore, always the highest priority. In a newsletter in 2021, Catherine Robertson, the executive director of DC Peers, wrote, “The adults in our Social Strategies group describe conversational awkwardness we don’t see in our actual group –​asked why, they said they feel safe here.” One way to create a sense of safety is to allow and encourage the individual to unmask to whatever extent they want. As discussed in the companion book to this volume, camouflaging or code switching is exhausting, even more so when there is an element of shame involved. As Dr. Devon Price, an autistic social psychologist, has noted, “Having to monitor what you say and how you act is exhausting. You have to be hypervigilant all the time to try to avoid detection, and you’ve even internalized that shame and blame.” Parents, spouses, co-​workers, friends, and therapists can be unique in autistics’ lives by not pressuring them to be more social or to be different from who they are. Be aware of your expectations. Requiring the autistic to make eye contact, observe typical communication patterns, or avoid stimming can make the person feel uncomfortable or even unsafe. When autistics are forced to do these sorts of things, even when they do them quite well, they pay a huge price –​namely exhaustion, burnout, anxiety, and/​or depression. My children taught me this lesson a few years ago. We were sitting at the dinner table, and my non-​autistic child was telling a story. My autistic kids (aged 20 and 18 at the time) were looking down at their plates. I became annoyed; it felt rude to me, so I asked them to make some eye contact so their sister would know that they were listening to her. They rightfully put me in my place, explaining, “Mom, we have to make eye contact out there in the world all day long. We shouldn’t have to force

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ourselves to do it here at home.” They were right, of course, and this led to a productive family discussion about how we can work together to best meet everyone’s communication needs.

Pay attention to the family system. While families are composed of individual people, each with their own needs, a family is also a system. The needs of each individual matter, just as the system itself relies on each person in order to function well. In some families with neurodiverse profiles, those dynamics can be particularly complex. Understanding and accommodating a vulnerable family member is essential, and it is also important that everyone in the system can get their needs met. Family therapy (with a therapist who understands neurodivergent profiles) can be an immeasurable help to families that are struggling. One intervention that I like is SPACE (Supportive Parenting for Anxious Childhood Emotions), which helps parents support and empower their anxious children while not over-​accommodating the anxiety. I look forward to seeing how this approach will be customized for families of autistic people. Meet them where they are. There are many ways to meet autistics where they are. In conversation, non-​autistics can adjust to the autistic’s preferred communication style, as discussed in the eye contact example above. Parents in particular are advised to give their children ample opportunities to converse about their special interests, rather than expecting their children to chat about their day or show interest in non-​preferred topics. Closeness is not necessarily achieved through conversations about feelings and/​or events of the day. Meet them where they are by showing interest in their interests and activities. (The irony is that showing interest in other people’s topics and activities is the advice often given to autistic people. This is a reminder to non-​autistics to take that same advice.) We can also meet autistics where they are by involving them in discussions about goals and interventions. Unless it is a matter of safety, people should not be forced to comply with interventions or have goals forced upon them. When developing a plan of action, the autistic person’s goals must be taken into account. For instance, sometimes autistic children are enrolled in social skills groups despite the fact that they

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are not motivated to be there. If the individual does not want to participate and/​or is uninterested in changing their social skills, the intervention is not likely to be effective and can backfire by becoming a source of distress or conflict. Help them develop a sense of competence and efficacy. People need to feel that they are competent to successfully navigate the unfamiliar and to adjust their approach as things change. This may feel easy to a non-​autistic person but may feel stressful or completely overwhelming to an autistic person, leading to avoidance, shutdown, or feelings of incompetence, which then further reinforce the feeling that they cannot handle even the most straightforward tasks. (Well-​meaning people can make this worse, saying things like, “That isn’t hard. Of course you can do that.”) Careful and collaborative consideration of how to provide a just-​right level of challenge –​one that feels challenging, but also feels manageable for the autistic person –​is the best way to help the autistic person (or any person) develop a sense of competence and resilience. Explore new communication/​ interaction patterns. Understand the autistic person’s communication style/​preferences and accommodate them as much as possible. (If you find this challenging, it will give you an idea of what it is like for autistics to adjust to non-​ autistic communication styles.) Although each client is unique, following are just a few helpful approaches to consider: • Try being direct. Avoid open-​ended or vague questions. Many, if not most, autistics prefer direct, clear, even concrete communication. For instance, “How do you feel about that?” or “How was your week?” is too vague for some individuals and may trigger a feeling that they have to give the right answer. Likewise, many autistic people prefer that you just tell them what you want, e.g., “Please wash the dishes” rather than “The dishes sure are dirty.” • Or try using declarative language. Some other autistic people do not like what speech language pathologists call mands (commands, demands). For these people, making an observation (“The dishes are dirty”) instead of giving an order (“Please wash the dishes”) allows them the opportunity to figure out what to do. We find that declarative observations work well with autistic people who have a particularly strong need for a sense of control.

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• Adjust your pace. Some autistics have slow processing speed and do better when you wait for them to process what you have said and give them time to formulate an answer. Be patient. Don’t assume they are confused or haven’t heard you, and don’t try to fill the silence with more talking. • Recognize the signs of fight or flight. Autistics do not always know when they are feeling anxious, overwhelmed, etc., and, even if they do know, they may be unable or too uncomfortable to express this and ask for help. When living or working with an autistic person, try to recognize signs indicating that they are entering fight, flight, or freeze, and try to learn what will help them in these situations. For instance, some people withdraw and need to be left alone for a while, while others need reassurance or distraction. When someone is already melting down (which can look like a tantrum), reasoning, negotiating, or using rewards or consequences will not help and will likely exacerbate everyone’s frustration. • Engage in activities more than conversation. Many non-​ autistics connect with others through conversation, sharing personal experiences, expressing emotions, etc. In contrast, many autistics have an easier time connecting through shared activities. For instance, I’ve spent countless hours attending war reenactments with my son. Though this was not my preferred way of spending a Saturday afternoon, I was happy to do it, because the shared experience nurtured our connection with each other. • Keep learning. There are countless books, podcasts, blogs, etc. about neurodiverse communication. One that I like is Is That Clear? Effective Communication in a Neurodiverse World by Zanne Gaynor, Kathryn Alevizos, and Joe Butler. Sarah also likes The Declarative Language Handbook by Linda Murphy. “When working with an autistic client, avoid therapy cliches like ‘How does that make you feel?’ or ‘Where are you feeling that?’ because we don’t know. Work on solution-​focused strategies. Work on breaking down impossible tasks to manageable pieces of tasks. Recognize that we are incredibly precise in our language, and that things must be communicated as such.

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Also recognize that we’ve been hurt by people quite a bit, and ANY pain that is accidentally inflicted by a professional hurts us tenfold.” –​autistic therapist Matt Lowry Validate, validate, validate. The importance of feeling truly understood and validated cannot be overstated. Validation is essential to building trust and rapport, as well as conveying support during challenging moments. We all need validation, and this is particularly true for autistics, who have frequently been (inadvertently) invalidated throughout their lives. This happens when autistic people are asked questions like “Why can’t you just eat that?”, “Why do you have to be so sensitive?”, and “Why can’t you just be friendlier?” Though these sorts of comments may have been well-​intentioned, autistics have lived their lives being misunderstood by those who love them, by their teachers, by colleagues and coworkers, by healthcare professionals, etc. Entire books have been written about this (e.g., The Power of Validation by Karyn D. Hall and Gwen Cook), and I’ll offer just a few pointers about validation here: • Validate first. When someone is experiencing a strong emotion, validate them before asking for more information about the problem and particularly before suggesting solutions. • You don’t have to agree in order to validate. You can validate someone’s feelings even if you disagree with their perceptions of a situation. If you have a different perspective from theirs, it will be far easier to find common ground after you have validated their feelings. • Validate with coaching. Validate when providing social coaching, particularly if the autistic does not understand or agree with your recommendation. Lauren was a happy 8th grader who loved school and reading. One summer, she decided to be a junior counselor at a summer camp she had attended for many years. Each evening, Lauren came home in a good mood and reported that she had had a great day. So Lauren’s mother was very

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surprised when the camp director called her and said that she was concerned about Lauren’s ability to do the job. Lauren’s mother asked for an example, and the director said, “Every morning, when the campers arrive, Lauren is supposed to greet them, but she just stands there silently.”When her mother brought this up, Lauren exclaimed, “That’s such a stupid rule! Why do I have to say hello to them when I just saw them the day before?” Lauren’s mother first validated her, “Yes, it’s such an arbitrary social rule, isn’t it? I can totally see why you feel that way!” She then explained to Lauren that “normies” (Lauren’s word for non-​autistics) get themselves all worked up if you don’t greet them the first time you see them each day, and that “normies” are sensitive and take it personally when they aren’t greeted. Because she felt validated and her mother saw the situation from her point of view, Lauren was able to take in the coaching.

Empower. Self-​advocacy is an important goal for all individuals and particularly for autistics. Following are some general ways to help empower autistics on an individual level: • Self-​knowledge. The first step toward self-​ advocacy is ­ self-​ awareness. You cannot ask for something if you do not know you need it! Help the autistic in your life understand their sensory, communicative, or other needs. To this end, some autistics may need help learning to pay attention to, contextualize, and ascribe accurate meaning to the physiological signals from their body. • Language. Help autistics develop clear language regarding their sensory, communicative, social, or other support needs. • Support efforts at self-​advocacy. Ideally, there will be less of a focus on compliance training (which essentially teaches autistic individuals to comply with other people’s goals and expectations) and more focus on helping them identify and work toward their own goals for self-​improvement. Parents, teachers, and supervisors can look for teachable moments when individuals make their first efforts at self-​advocacy and support these efforts, even when they are delivered in a manner that is not ideal. This is particularly important for autistic females, who are especially vulnerable to victimization.

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• How can I help? Instead of giving advice or offering solutions to problems, ask the individual, “How can I help?” This will let them feel your support while keeping the onus of figuring out what they need on them. Asking this question conveys to the individual that you have faith that they can solve this problem, and that you are willing to help in whatever way they need. For some people, saying, “I know you will be able to figure out what to do. Let me know if I can help,” works better than asking, “How can I help?” Autistic researcher Dena Gassner asserts that some autistics may increase their confidence in self-​ advocating by using a three-​ step strategy. She recommends that, first, autistic individuals should learn about autism from the first-​person accounts of other autistic people. She then recommends they learn how they experience the world through their own autistic lens by studying their experiences and finding words that best describe them. Finally, she suggests that autistic individuals solicit feedback from trusted allies, so they can refine their understanding of themselves and the language they use to convey their needs to others. For example, “I’m autistic, and florescent lights give me migraines. Can we either change the lights in this room or meet in my office?” Help manage neuro-​crash and burnout. As discussed in the companion volume to this book, Is This Autism? A Guide for Clinicians and Everyone Else, neuro-​crash and burnout are serious problems for many autistics. As Laura Weldon, an autistic healthcare professional, points out, “I believe that autistic burnout is the condition that we really need to be working to prevent and treat, rather than our innate differences.” Ideally, the people who live with, teach, work with, and support autistics will help to minimize neuro-​crash and burnout and to facilitate recovery when they do happen. How to do this will vary for each individual. For detailed guidance on addressing autistic burnout, please explore some of the many writings by autistic individuals, one of my favorites being the Autistic Burnout Recovery blog post on Neurodivergentinsights.com by autistic psychologist Megan Anna Neff. I will, however, offer some basic ideas that have been helpful for many of the autistics I have known:

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• Manage sensory input. Work with the individual to understand their sensory needs and challenges. For example, they may benefit from adjusted lighting or noise levels, avoiding human touch, having access to preferred foods, being able to wear preferred clothing, etc. Understand that sensory needs change from situation to situation and day to day. • Be flexible with social expectations. For example, I recently worked with an autistic man who requested that his coworkers not try to engage him in chit chat at work. I also recently worked with a teenager who advocated with her parents to allow her to leave extended family dinners and get-​togethers after 15 minutes of interacting. • Individualizing accommodations. In addition to sensory and social accommodations, help the autistic identify other conditions that create neuro-​crash or burnout for them. One excellent tool to assist with this is the Person in Context worksheet by Drs. JÂcqûelyn Fede and Amy Laurent on AutismLevelUp.com. • Create time and space for recovery. When an autistic person has an unplanned crash after no longer being able to cope with overwhelm, they may feel shame for needing the downtime, even if they are physically unable to get out of bed. Those around them may accuse them of being lazy, irresponsible, or dramatic. In contrast, planned recovery time confers no shame or blame. The individual gives themself permission to meet their biological need to recover, and those around them support this process. All involved need to remember that this is not a luxury but is instead a biological necessity for the autistic person’s basic health and wellness. Balance camouflaging and authenticity. Therapy should not teach autistics to camouflage more or to camouflage less, but should instead be focused on how to gain awareness about camouflaging and to find a balance between using it as a tool to be functional in their lives while still being able to “drop the mask” and be themselves. As Dr. Devon Price, an autistic social psychologist, has noted, the goal is “finding where do I have to mask, where do I not have to mask, and how can I get my life in balance, so I can be as authentic as possible safely….”.

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From the experts: Reflections on authenticity

“My ‘symptoms’ have gotten much more pronounced now that I am allowing them to manifest externally, but I am much more comfortable with the person that I am and the things that I do. My functioning has in some cases gotten better, now that I know how to provide for my needs a lot better.” –​ Mimi



“I’ve given up on camouflaging. The costs to my health are too high. I have surrounded myself with fellow-​autistics. I don’t need to be anyone other than myself to be loved and accepted by them. I work third shift when the world is quiet and dark and peaceful.” –​Jenna J.

Help autistics meet their sensory/​movement/​regulation needs. Countless autistic individuals have been encouraged, told, forced, or shamed into giving up their stims. However, advocacy from many autistics has shown that stims serve important purposes, whether they include movement, use of objects, or sensory experiences. If you know an autistic who has a stim, first ask yourself if the stim is actually causing a problem, then ask yourself whose problem it is. For example, if a stim is annoying to another family member, the autistic person should not simply be told to stop. It is a problem between two people, who need to collaborate to find a mutually agreeable solution. If a stim is potentially problematic for the autistic, as in the example below, it is important to help the individual understand why and help them come up with an alternate way of meeting their needs. Shame, blame, rewards, and punishments have no place in this process. Similarly, many autistic people choose the same foods each day. An outside observer may view this as “rigid,” but there are typically good reasons for this habit. For instance, the individual’s food options may be limited due to sensory differences, and eating the same meal each day is also far less taxing on executive functioning. Gage, an autistic 11th grader, has had the same routine for many years. When they are stressed or excited, they run back and forth, flicking their hands and daydreaming. Their parents, concerned about how Gage’s peers

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might react, had been encouraging Gage to stop this behavior, even rewarding them when they did not engage in it. Once Gage’s parents understood the purpose of the behavior and its importance to Gage, they no longer tried to convince Gage to stop. Instead, they collaborated with Gage to find alternate behaviors that they could use to elicit the same feeling on occasions when they did not have access to a private space. Gage found that bike riding worked well for them, and they benefited from having this additional option.

Help them reimagine what their life might look like. One’s culture (which includes subcultures, religious communities, family cultures, etc.) provides a vision of what life “should” look like. For instance, many people believe that it is “best” to wake up early, work during the day, and sleep at night. However, this is not necessarily the best schedule for everyone; some people do better being productive at night and sleeping during the day. Another example of this is marriage; in many cultures, there is a belief that being in a (heterosexual) marriage is somehow ideal, but that is certainly not true for everyone. Autistic individuals should learn about these implicit assumptions and evaluate whether or not those assumptions work for them. It can be incredibly freeing to learn that you can create a life that supports your well-​being, even if that life looks different from the lives of those around you. Charlotte, a 28-​ year-​ old college graduate, strongly preferred to be awake at night and sleep during the day. Whenever she was employed, Charlotte forced herself to try to sleep at night and work during the day. Her employers loved her, but Charlotte was chronically exhausted and overwhelmed, and she was unable to maintain employment for more than a few months, even when she really liked the job itself. Charlotte’s therapist encouraged her to reimagine what her life could look like and to consider getting a job that allowed her to work at night and sleep during the day. This schedule worked much better for Charlotte, possibly because of the lower level of social demands and sensory input at night. For the first time, Charlotte could see herself staying at a job indefinitely.

Identify and prioritize the core challenges. As Sarah frequently tells her clients, you can’t boil the ocean. Autistics often have

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multiple challenges –​some that are directly related to their autism, and others related to their co-​occurring conditions. It can be overwhelming for the clients (as well as their parents, teachers, and healthcare professionals) to develop and implement a comprehensive plan to address it all at once. For this reason it is critical to prioritize and collaborate. Each individual, with assistance if needed, is encouraged to consider what is most problematic for them and what changes they would like to make in their life. To do this, it is helpful to get big picture awareness of the many interlocking and interdependent challenges, in order to know how to move forward. For instance, regulation of the body is essential for regulation of emotions. It may be helpful or necessary to begin with medical challenges, as many autistics have medical challenges that contribute to their anxiety and/​or exhaustion. Of course, if there has been trauma, that will also need to be considered as a plan is developed. Support connection with like-​minded individuals. In addition to advising clients to seek connection with others who have shared interests (discussed below), also encourage them to develop connections with people who experience and respond to the world in similar ways. Connecting with others who share and understand their experiences can reduce isolation and be empowering for autistics and also for their family members. Online communities can be particularly helpful for autistic individuals. These communities offer a wider pool of people with whom they can find connection, and the asynchronous pace gives them an opportunity to take their time in interactions. Moreover, there is less pressure to camouflage online. From the experts: Reflections on community

“It’s helped me connect with other people who are autistic, mostly through online communities and forums, which then helps me to recognize that there are many other people out there, actually, who are seeing the world and thinking about it in ways similar to the way that I do. The odds are we don’t meet out in the meatspace world, because most of us are masking and hiding, and so we don’t even recognize each other.” –​Pat G.

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“I think the best environment, at least for lower-​support-​needs autistics like myself and many in this group, is a mixed environment where there are fellow autistics, ADHD folks, people with learning disabilities, and neurotypicals. That way there will be people there that they can relate to and not feel so isolated.” –​Zachary M.

Consider medication for co-​occurring disorders. The most common psychotropic medications prescribed for autistics target symptoms of ADHD, anxiety, and depression/​irritability. There is evidence that some of these medications may be less effective in autistics than in non-​autistic individuals, and that autistic individuals may be more sensitive to side effects. However, there is also evidence that some of these medications can be quite helpful for autistic clients. There is no way to predict an individual’s response to these types of medications; only a trial can do that. There are many autistic people who benefit greatly from medication, and there are also many who cannot tolerate these types of medications (or do not wish to try). Encourage autistic individuals (and/​or their parents) who struggle with ADHD, anxiety, depression, and/​or irritability to have open discussions with their healthcare professionals about the potential risks and benefits of medication. Build knowledge, skills, and habits. This will vary from person to person, but some common examples are offered here: • Adaptive functioning. Ideally, every adolescent and young adult –​autistic or not –​would be encouraged to take practical life skills classes, focused on cooking, managing a household budget, home maintenance, etc. This may be particularly important for autistics, who often take longer to launch into independent adulthood than their non-​autistic peers. • Healthy lifestyle. Regulating one’s body is a foundation for regulating one’s cognition and emotions. This includes regular and sufficient sleep, common-​sense nutrition (including adequate hydration), access to nature, and some form of regular movement. • Interoceptive awareness. Interoceptive awareness is a basis for managing basic homeostasis (e.g., eating when hungry, managing pain), as well as emotions (e.g., anxiety, anger). People who have unusually high, low, or altered interoceptive awareness (as many autistics do) are

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vulnerable to poor health and emotional well-​being. It is important for individuals to learn to pay attention to and interpret the physiological signals from their body, as well as the language to communicate their experience and thus their needs. There are many ways to do this, such as yoga, mindfulness, somatic therapies, and biofeedback. For more information on this, explore Kelly Mahler’s work on interoception, including her many insightful and practical webinars and books. • Radical downtime. We can all benefit from radical downtime, whether through daydreaming, running, hiking, meditating, or one of the countless other ways to do this. Help your clients find their own form of radical downtime, which one autistic woman I know calls aggressive pondering. • Puberty/​sex education. Autistics often have challenges understanding and making peace with changes in their body and with their sexuality. Proactively teach your clients about the physiological aspects of their body, and support them in learning how to safely meet their sexual needs and desires. • Social skills. Social skills interventions can be very helpful for some clients. However, for others, it is more important for them to find ways to camouflage less, not more. Thus, be cautious about categorically referring autistic clients to social skills groups because: • Clients do not always generalize what they learn in those groups (and this is particularly true if they are lacking insight, motivation, or context sensitivity); • This intervention teaches the autistic person how to camouflage, when over-​camouflaging is often the problem, especially for people with a less obvious presentation; • Autistics who mask often do not feel that they are well-​matched with people who are in social skills groups; and • Social skills training places the burden of change entirely on the autistic person. • If the autistic person wants guidance about how to interact with non-​autistic people, and they are not doing it just to please someone else, then by all means do support them by guiding

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them in this process. There are a few options for this. In addition to social skills groups (if a well-​matched one is available), parents or significant others can provide informal coaching. This can occur in-​the-​moment, in anticipation of a future situation, and/​or in the form of debriefing afterwards, as long as this is done in a supportive, non-​judgmental manner. Another good option is improv. Improvisation skills are the same as good conversation skills: Pay attention to what the other person says, then build on it. Finally, I recently saw a social media post, by Neurodivergent Lou, suggesting SPIN (special interest) groups as a place to practice connecting with others, rather than social skills groups, and I couldn’t agree more! Choose interventions carefully. Interventions must be individualized, depending on each individual’s strengths, challenges, culture, resources, and goals. However, here are some general reflections based on my clinical experience and the lived experience of many autistics I have known. • Compliance training may have significant repercussions. There are countless adults who have felt traumatized by compliance training. Unless there are safety concerns, the autistic must be on board with the goals of any intervention (and not solely to please other people or fulfill their or another’s wish to “be normal”), and they also must be reasonably comfortable with the process of any intervention. If the process is overwhelming or distressing, there must be collaborative problem-​solving to reassess the plan and create a sense of safety. • CBT or DBT may or may not be effective. Just because an approach works for non-​autistic individuals does not mean it will work for a neurodivergent person. For example, if a client has low interoceptive awareness with associated alexithymia, referring them for CBT to treat anxiety may not be helpful. If they are not aware of being anxious, then teaching them what to do when they are anxious will not work. Rather, that client may benefit from working with a psychotherapist or occupational therapist to improve their ability to attend to and interpret the signals from their body (e.g., to know that when they feel their stomach clench and their heart

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rate increase, they may be anxious). Some researchers are now developing and assessing CBT approaches that are adapted for autistics, which is promising. Dialectical Behavior Therapy (DBT), when implemented by a therapist who understands autism, can be helpful, as it teaches emotion recognition and validation, body awareness, distress tolerance, and other relevant skills. • Traditional “talk therapy” also may or may not be indicated. For some clients, open-​ended, supportive talk therapy can provide the validation and the safe space needed for them to experience and make meaning of their inner world, in the context of a trusting relationship. It is essential that the therapist in this scenario is neurodiversity-​affirmative, and it can be particularly powerful if the therapist themself is neurodivergent. Other autistic individuals, however, may not be comfortable with or benefit from this type of therapy. This may be because of the ambiguous nature of this approach, the need to first develop greater interoceptive awareness, or because of discomfort talking about private matters with “a stranger.” • Body-​based therapies may be effective. As with many people who have experienced trauma, autistic people may respond to stress by unconsciously shifting into survival mode –​responding as if their life has been threatened. In addition to developing greater interoceptive awareness (as mentioned above), autistic people may find it helpful to develop awareness of how their body experiences perceived threat, and to address how they move and hold their bodies when they experience those feelings, through somatic therapies that are appropriately adjusted for autistic sensory needs. • Interventions for co-​occurring challenges. When an individual has any co-​occurring challenges, the appropriate referrals should be discussed with them (and/​or their parents). For instance, if language is problematic, refer to a speech-​language pathologist; if there are significant sensory challenges, refer to an occupational therapist, etc. “Autistic therapy is basically equal parts advocacy work, processing the trauma, working on healthy AUTISTIC coping skills, finding methods of self-​care, and encouraging natural autistic relationship building.” –​autistic therapist Matt Lowry

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Provide formal accommodations at school. Beyond typical academic accommodations that are provided for co-​occurring challenges (which are not addressed here), consider suggesting other accommodations which might make school life less stressful. For example: • Relationship building. Teachers and professors should take time at the beginning of the year to get to know these students either one-​on-​one or in a small group. Building a positive relationship with your students is necessary if you want them to feel comfortable collaborating with you if/​when challenges arise. This time investment can lay the groundwork for navigating difficult situations that may arise later. Many students also benefit from having a safe person they can go to when overwhelmed. • Clear communication. Some students need instructions explained in more detail, with intermediate steps explicitly spelled out. Do not assume that every student can understand your nonverbal cues, such as a certain look or tone of voice. Instead, focus on communicating directly and explicitly. If things go awry for any reason, set aside one-​on-​one quiet time to listen carefully and try to understand the student’s experience and perceptions, explicitly communicate your observations and expectations, and assist the student in collaborative problem-​solving. • Extra time. Some autistic students require extra time to process incoming information, to formulate a response either orally or in writing, or to otherwise interact with others and their environment. Allow these students that extra time in interactions, as well as on assignments, quizzes, and tests. • Classroom anxiety management. Situations that seem benign to most people may feel stressful or even threatening to autistic students. Work with the student to learn what is anxiety-​provoking for them, and develop accommodations together. For example: • Students may be allowed to choose their seat in each class to increase their comfort level (e.g., if they want to sit in the back, near a friend, or near the door). • They also may feel safer with an agreement that they will not be called on unless they have their hand raised.

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• Many autistic students are particularly uncomfortable with remote learning and should be allowed to keep their cameras off. • Because some autistic people have a very difficult time with assignments involving self-​reflection, these students should be given alternate options for assignments that require personal disclosure or reflection. Keep in mind the point of the assignment. If it’s to increase social-​emotional awareness, self-​ reflection may be required. But if it’s to understand character motivation or an historical event, self-​reflection is likely not needed. • Social supports. In addition to formal opportunities for structured social groups, such as lunch groups, some students require additional guidance or support during group projects. This may include assigned partners, clear discussion about each person’s role within the group, or (at times) the option to complete an individual project in lieu of a group project. • Sensory supports. The student’s sensory needs and preferences should be met whenever possible. This can include allowing the student to chew gum, use fidget toys, wear headphones, etc. It can also be helpful for some students to have a designated quiet place for lunch, or to leave class early to avoid crowded hallways during the shift between classes. Some students may need a separate quiet space for testing. • Ongoing problem-​solving. It can be helpful to have one identified person at school who can check in with the student at least weekly to proactively problem-​solve, communicate with parents as needed, and support the student in any efforts to self-​advocate. • Special events. Special events, such as field trips or large assemblies, can be stressful for some autistic students due to sensory overwhelm, novel social expectations, and/​or the variance from the regular school day. These students should have the option to skip events like these. • College accommodations. Some autistic students may require a private or semi-​private bathroom, a private dorm room, a room in a quiet dorm, or in a quiet location in the dorm (e.g., away from

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the elevator or community room). It may also help to have the option to move in a few days early, in order to adjust to the new living environment before coping with the overwhelm of other students arriving all at once and the start of classes. I recently consulted with a therapist, Leigh, who was struggling to help Mr. and Mrs. Hicks and their autistic daughter, Lila. Lila was a “perfect” student in 4th grade. She earned almost straight As and was noted to be a role model in the classroom. Lila was always polite and respectful to her peers and teachers throughout the school day. At home, however, Lila was reported to be incredibly dysregulated. She was persistently irritable, uncooperative, disrespectful, and at times aggressive. Since Lila was perfectly capable of being regulated, compliant, and respectful at school, her parents and therapist interpreted her behavior at home as volitional, and they made that the focus of treatment.They had tried many different approaches, including behavior plans, collaborative problem-​solving, and medication, to change Lila’s behavior at home. Eventually, they ran out of options, and Leigh called me for ideas. My take? Stop focusing on Lila’s behavior at home and start focusing on what it was costing Lila to be “perfect” at school. Even though the school had no concerns about Lila’s academic or behavioral functioning, she actually required accommodations, such as having a quiet place to eat lunch (because the cafeteria was overwhelming to her), being able to choose her seat in each class, not being called on unexpectedly in class, and being allowed to use sensory fidget toys. As part of this plan, Lila’s parents were taught to consider the first few hours after school as recovery time for Lila, and they limited their demands on her until she was ready to engage with the family. As she was supported in these ways, Lila became much more emotionally and behaviorally regulated at home.

Provide formal accommodations at work. Accommodations at work can also help make work life less stressful. Employers can make it easier for their autistic employees to be productive when they make these modifications: • Clear communication. As was true for students, autistic employees may need expectations and instructions explained in detail,

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with intermediate steps explicitly spelled out, as well as how the work product should be delivered. Work with each employee to learn their communication preferences and needs; many autistics prefer or require communication that is direct and explicit, with corrections discussed in private so the involved parties can collaborate to find a mutually agreeable solution. It can be helpful to provide general expectations in writing in an employee manual (e.g., work hours, office attire, how to request leave, expected attendance at meetings and company functions, etc.). Brenna was a college graduate who was working as an administrative assistant at a dentist’s office.The dental practice had traditional paper files for each patient, and the first page of every file listed important information, such as the patient’s name, medications, insurance, etc. To make this page stand out in a file full of white papers, the practice always printed this sheet in blue. Everyone referred to the “blue sheet” on each patient as the place to find key information quickly. One day, after Brenna had been working at the practice for about a year, the office manager gave her one of these blue sheets (on blue paper) and asked her to make 50 copies, for use with future patients. The office manager did not think to specify that the copies should be blue, and Brenna made 50 copies on white paper.

• Frequent and explicit check-​ins. An autistic employee may find it helpful for supervisors and co-​workers to check with them to make sure they understand work expectations and deadlines. Asking explicitly about the details of the autistic person’s work can provide an opportunity to clarify or correct any misunderstandings, as well as to collaboratively problem-​solve as needed. • Social interactions/​ peer relationships. Some individuals may do best with explicit agreements with their coworkers not to have to engage in small talk before or after meetings (or at all), as well as not being required or pressured to attend after-​hours social events. In some cases, if the individual would like, it can be helpful to facilitate connections with more experienced colleagues to help the autistic person navigate the work environment.

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• Clearly define roles. Autistic employees may require explicit guidance regarding their role on a team, e.g., what they need to do or how to interface with other members of the team. • Sensory supports. The employee’s sensory needs and preferences should be met whenever possible. This can include access to private (quiet) space, noise-​canceling headphones, alternative lighting options, scheduled movement breaks, etc. • Collaborate to develop individualized accommodations. Accommodations are unique, depending on the individual and their particular work and work environment. Some autistic employees may require flexible work hours, the ability to work from home, or the ability to keep their camera off during remote meetings, or they may need permission to do an activity that keeps their hands busy during meetings, just to name a few. Listen to the employee to learn and understand what is stressful or challenging for them, and develop accommodations together.

Connecting culture As much as possible, clinicians should tailor their recommendations and referrals to match the family’s ability and openness to follow through with the suggestions you provide. Be aware of your client’s access to services before considering recommendations. For example: Do they have health insurance? Are they able to go out of network? Can they afford to consider private school? Do the parents have jobs that are flexible enough to allow them to take their children to after-​school appointments or activities? Is transportation available? When possible, include insurance-​ based or government-​/​grant-​funded referrals. Remember that useful support and services can be provided through other parents or community groups (i.e., parent advocacy groups, parent support groups, etc.). Try to include referral sources near the family’s home. Be aware of your client’s openness to services. In some cultures or subcultures, there may be a negative perception of certain interventions. For instance, individuals in some groups are highly reluctant to try medication (or to try their child on medication). It is essential for clinicians to be aware of these preferences or concerns

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and to work collaboratively with their clients to develop a realistic and achievable plan. “Many families of color are not keen on having people enter their homes. You’ve just given them a listing of [in-​home] providers. The family is like ‘I don’t trust these people coming into my house.’ [This] isn’t going to get you anywhere. How do we navigate that? We have to get through that barrier first. It’s backing up and understanding what does this look like for this family.” –​ Allysa Have an open conversation with the client/​family about their preferences for referrals. Some families prefer to work with professionals who have similar backgrounds, while others prefer to avoid having a professional relationship with those in their cultural community. There may be instances where a referral to a provider of a shared background is helpful. A family’s desire to work with a provider of the same or similar culture may not only offer an unspoken understanding of experience and help build trust, but also provide a source of esteem for clients who may have felt marginalized. In contrast, when a family is concerned about stigma and rejection, providing referrals outside of their community may make it easier for them to seek support. “I speak [language] but a lot of [specific ethnic group] don’t want to see me for an evaluation. It’s a small community so they are afraid of me learning about them. There’s a lot of paranoia about how one is perceived by the community, so they are concerned about protecting their privacy.” –​Dr. G. [Dr. G. did not want to reveal the ethnic group with which she identifies out of concern and desire to protect the anonymity of the community of which she is a part.] Similarly, when referring to support or social groups, consider whether the client/​family will find other people who share their cultural background there. It’s harder to speak up when you are the only Black, Asian, Muslim, or Spanish-​speaking person there (to name a few). As mentioned in the chapter on Meaningful Discussions, some cultures view developmental differences as shameful or as a punishment for a past transgression. This can make it difficult for family members to

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disclose the diagnosis to their community and can extend to treatment, making it even harder for the family to get help. Families may reasonably be afraid that their community will reject them when they learn about their child’s “issues.” Proactively seek this information, so you can work with the family to navigate supports while also helping them stay integrated with their community.

Focus on strengths and preferences Much of the advice in this chapter has been offered to help autistic people recover from the emotional and physical damage caused by denying their needs. However, it is just as important for autistic people to find and do the things that give them a sense of well-​being and wholeness. Support the autistic person in a process of creating a happier and more fulfilling life. To this end, encourage and support the autistic individual as they pursue topics or activities of interest to them. Having strong interests can form the basis for a career, provide a way to connect with others, be used to relax, and offer the experience of flow. When an autistic person has a strong interest, nourish and support it.

References and related reading Becerra, T. A., Massolo, M. L., Yau, V. M., Owen-​Smith, A. A., Lynch, F. L., Crawford, P. M., Pearson, K. A., Pomichowski, M. E., Quinn, V. P., Yoshida, C. K., & Croen, L. A. (2017). A survey of parents with children on the autism spectrum: Experience with services and treatments. The Permanente Journal, 21, 16–​19. https://​doi.org/​10.7812/​TPP/​16-​009 Bernier, A. S., & McCrimmon, A. W. (2021). Attitudes and perceptions of Muslim parents toward their children with autism: A systematic review. Review Journal of Autism and Developmental Disorders, 9, 320–​333. https://​doi. org/​10.1007/​s40​489-​021-​00256-​9 Broder-​Fingert, S., Mateo, C., & Zuckerman, K. E. (2020). Structural racism and autism. Pediatrics, 146(3), e2020015420. https://​doi.org/​10.1542/​ peds.2020-​015​420 Colombi, C., Narzisi, A., Ruta, L., Cigala, V., Gagliano, A., Pioggia, G., Siracusano, R., Rogers, S. J., & Muratori, F. (2018). Implementation of the Early Start Denver Model in an Italian community. Autism, 22(2), 126–​133. https://​doi.org/​10.1177/​13623​6131​6665​792

Recommendations  293 Ecker, J. (2010). Cultural belief systems in autism and the effects on families [Bachelor’s thesis, Barnard College]. https://​doi.org/​10.7916/​D8TX3​NCQ Fitzgerald, M., & Yip, J. (2017). Autism: Paradigms, recent research and clinical applications. InTech Limited. Henderson, D., Wayland, S.C., & White, J. (2023). Is this autism? A guide for clinicians and everyone else. Routledge. Jegatheesan, B., Miller, P. J., & Fowler, S. A. (2010). Autism from a religious perspective: A study of parental beliefs in South Asian Muslim immigrant families. Focus on Autism and Other Developmental Disabilities, 25(2), 98–​109. https://​ doi.org/​10.1177/​10883​5761​0361​344 Jones, D. R., Nicolaidis, C., Ellwood, L. J., Garcia, A., Johnson, K. R., Lopez, K., & Waisman, T. (2020). An expert discussion on structural racism in autism research and practice. Autism in Adulthood, 2(4), 273–​281. https://​doi. org/​10.1089/​aut.2020.29015.drj Kandeh, M. S., Kandeh, M. K., Martin, N., & Krupa, J. (2020). Autism in black, Asian and minority ethnic communities: A report on the first Autism Voice UK Symposium. Advances in Autism, 6(2), 165–​175. https://​doi.org/​ 10.1108/​AIA-​12-​2018-​0051 Kang-​Yi, C. D., Grinker, R. R., Beidas, R., Agha, A., Russell, R., Shah, S. B., Shea, K., & Mandell, D. S. (2018). Influence of community-​level cultural beliefs about autism on families’ and professionals’ care for children. Transcultural Psychiatry, 55(5), 623–​647. https://​doi.org/​10.1177/​13634​6151​ 8779​831 Kapp, S. K. (2011). Navajo and autism: The beauty of harmony. Disability & Society, 26(5), 583–​595. https://​doi.org/​10.1080/​09687​599.2011.589​192 King, B. H., Rynkiewicz, A., Janas-​Kozik, M., & Tyszkiewicz-​Nafor, M. (2020). Medications to treat co-​occurring psychiatric conditions in autism spectrum disorder. In S. W. White, B. B. Maddox, & C. A. Mazefsky (Eds.), The Oxford handbook of autism and co-​occurring psychiatric conditions (pp. 370–​386). Oxford University Press. Lee, H. J. (2011). Cultural factors related to the hidden curriculum for students with autism and related disabilities. Intervention in School and Clinic, 46(3), 141–​ 149. https://​doi.org/​10.1177/​10534​5121​0378​162 Leung, C., Tsang, S., Heung, K., & Yiu, I. (2009). Effectiveness of parent–​child interaction therapy (PCIT) among Chinese families. Research on Social Work Practice, 19(3), 304–​313. https://​doi.org/​10.1177/​10497​3150​8321​713 Liao, Y., Dillenburger, K., & Buchanan, I. (2018). Does culture matter in ABA-​ based autism interventions? Parent and professional experiences in the UK and China. European Journal of Behavior Analysis, 19(1), 11–​29. https://​doi. org/​10.1080/​15021​149.2017.1399​657

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Little, C. (2017). Supporting social inclusion for students with autism spectrum disorders: Insights from research and practice. Taylor & Francis. Mandell, D. S., & Salzer, M. S. (2007). Who joins support groups among parents of children with autism? Autism, 11(2), 111–​122. https://​doi.org/​ 10.1177/​13623​6130​7077​506 McCabe, K. M., Yeh, M., & Zerr, A. A. (2020). Personalizing behavioral parent training interventions to improve treatment engagement and outcomes for culturally diverse families. Psychology Research and Behavior Management, 13, 41–​ 53. https://​doi.org/​10.2147/​PRBM.S230​005 McGee, D. (2010). Widening the door of inclusion for children with autism through faith communities. Journal of Religion, Disability & Health, 14(3), 279–​ 292. https://​doi.org/​10.1080/​152289​6100​3622​351 McNeil, C. B., & Hembree-​Kigin, T. L. (2010). PCIT around the world. In C. B. McNeil & T. L. Hembree-​Kigin (Eds.), Parent-​Child Interaction Therapy: Second Edition (pp. 421–​427). Springer US. https://​doi.org/​10.1007/​978-​0-​387-​ 88639-​8_​24 Neff, M. A. (2023, March). Autistic burnout recovery: How to build a recovery plan. neurodivergentinsights.com. https://​neu​rodi​verg​enti​nsig​hts.com/​blog/​ autis​tic-​burn​out-​recov​ery Oh, M., Laugeson, E., Kim, J.-​H., Lee, K., Kim, J., Lee, S., Lim, B., Cha, S., Bong, G., Yoon, N.-​H., Bahn, G. H., & Yoo, H. J. (2021). A randomized controlled trial of the Korean version of the Program for the Education and Enrichment of Relational Skills for Young Adults (PEERS®-​YA-​K) with autism spectrum disorder: A pilot study. Frontiers in Psychiatry, 12, 730448. https://​doi.org/​10.3389/​fpsyt.2021.730​448 Pearson, J. N., Stewart-​Ginsburg, J. H., Malone, K., & Avent Harris, J. R. (2022). Faith and FACES: Black parents’ perceptions of autism, faith, and coping. Exceptional Children, 88(3), 316–​334. https://​doi.org/​10.1177/​ 001440​2921​1034​152 Raymaker, D. M., Teo, A. R., Steckler, N. A., Lentz, B., Scharer, M., Delos Santos, A., Kapp, S. K., Hunter, M., Joyce, A., & Nicolaidis, C. (2020). “Having all of your internal resources exhausted beyond measure and being left with no clean-​up crew”: Defining autistic burnout. Autism in Adulthood, 2(2), 132–​143. https://​doi.org/​10.1089/​aut.2019.0079 Russo, F. (2018, February 21). The costs of camouflaging autism. Spectrum News. www.spect​rumn​ews.org/​featu​res/​deep-​dive/​costs-​camou​flag​ing-​aut​ism/​ Sakai, C., Mulé, C., LeClair, A., Chang, F., Sliwinski, S., Yau, Y., & Freund, K. M. (2019). Parent and provider perspectives on the diagnosis and management of autism in a Chinese immigrant population. Journal of Developmental and Behavioral Pediatrics: JDBP, 40(4), 257–​265. https://​doi.org/​10.1097/​ DBP.00000​0000​0000​660

Recommendations  295 Someki, F., Torii, M., Brooks, P. J., Koeda, T., & Gillespie-​Lynch, K. (2018). Stigma associated with autism among college students in Japan and the United States: An online training study. Research in Developmental Disabilities, 76, 88–​98. https://​doi.org/​10.1016/​j.ridd.2018.02.016 Sritharan, B., & Koola, M. M. (2019). Barriers faced by immigrant families of children with autism: A program to address the challenges. Asian Journal of Psychiatry, 39, 53–​57. https://​doi.org/​10.1016/​j.ajp.2018.11.017 Tarakeshwar, N., & Pargament, K. I. (2001). Religious coping in families of children with autism. Focus on Autism and Other Developmental Disabilities, 16(4), 247–​260. https://​doi.org/​10.1177/​108​8357​6010​1600​408 Tincani, M., Travers, J., & Boutot, A. (2009). Race, culture, and autism spectrum disorder: Understanding the role of diversity in successful educational interventions. Research and Practice for Persons with Severe Disabilities, 34(3–​4), 81–​ 90. https://​doi.org/​10.2511/​rpsd.34.3-​4.81 Wang, Y., Kang, S., Ramirez, J., & Tarbox, J. (2019). Multilingual diversity in the field of applied behavior analysis and autism: A brief review and discussion of future directions. Behavior Analysis in Practice, 12(4), 795–​804. https://​ doi.org/​10.1007/​s40​617-​019-​00382-​1 Welterlin, A., & LaRue, R. H. (2007). Serving the needs of immigrant families of children with autism. Disability & Society, 22(7), 747–​760. https://​doi.org/​ 10.1080/​096875​9070​1659​600 Wendt, J., & Lincoln, A. (2011, May 12). Autism in an American Indian and Alaska native sample: The contribution of demographic characteristics, levels of acculturation, and cultural values and beliefs on service utilization [Poster presentation]. International Meeting for Autism Research, San Diego, CA. https://​insar.con​fex.com/​ insar/​2011/​web​prog​ram/​Paper9​515.html Wright, H., Hall, S., Hames, A., Hardiman, J., Mills, R., Team, P. P., & Mills, D. (2015). Pet dogs improve family functioning and reduce anxiety in children with autism spectrum disorder. Anthrozoös, 28(4), 611–​624. https://​doi. org/​10.1080/​08927​936.2015.1070​003 Zuckerman, K. E., Sinche, B., Cobian, M., Cervantes, M., Mejia, A., Becker, T., & Nicolaidis, C. (2014). Conceptualization of autism in the Latino community and its relationship with early diagnosis. Journal of Developmental and Behavioral Pediatrics: JDBP, 35(8), 522–​532. https://​doi.org/​10.1097/​ DBP.00000​0000​0000​091

The end

I will end where I began: by asking, Why did I write this book? I wrote this book because I wholly believe that all people deserve to be seen. To be understood. To be accepted and validated. To be allowed to move through the world in the ways that work for them, and to be valued for their unique contributions. To understand themselves, to feel safe, and to pursue a well-​rounded life with connection and purpose. We all deserve these –​regardless of gender, race, age, religion, sexual orientation, or neuro-​style. I hope that the information in this book –​and particularly the words of the autistic individuals who shared their lived experience –​moves us slightly in the right direction.

DOI: 10.4324/9781003403838-14

Index

Note: In this index page numbers for tables are in bold text. ABA (applied behavior analysis) 266 ABAS-​3 (Adaptive Behavior Assessment System) 132 ableism 11, 166, 250, 268 abuse 22, 63, 187, 191 access to services 290 accommodations 6, 14, 24, 70, 122, 267–​268, 278, 286–​290 Achenbach system 131–​132 ACS (Advanced Clinical Solutions for WAIS-​IV and WMS-​IV) 164–​165 Adaptive Behavior Assessment System (ABAS-​3) 132 adaptive functioning 51, 82, 97, 132, 181, 212, 214, 282 ADHD see attention deficit hyperactivity disorder (ADHD) ADI-​R (Autism Diagnostic Interview-​ Revised) 29, 87, 107–​108, 119, 168–​169, 170 adjustments see accommodations ADOS-​2 see Autism Diagnostic Observation Schedule, 2nd edition (ADOS-​2) Advanced Clinical Solutions for WAIS-​IV and WMS-​IV (ACS) 164–​165 affect 28, 73, 151, 153, 181, 186, 203, 242; flat 115, 126, 146, 156, 205, 208, 211; restricted 146–​147, 240 Affect Naming subtest, of ACS 164–​165, 253 affection 55, 72

affective empathy 188, 189 alexithymia 133, 156, 191, 205, 284 “all a little bit autistic”, we are not 24 ambiguity 90–​92, 102, 108; of the MIGDAS 167 AN (anorexia nervosa) 207 animals 52 anorexia nervosa (AN) 207 antisocial personality disorder 187–​188 anxiety: of autistics 12, 14, 47, 51, 53, 76, 82, 123, 126, 133, 153, 179, 182–​183, 186; classroom management of 286–​287; disorders of 178–​179, 185, 195, 237; managing other people’s 269–​270; social 24, 115, 149, 152, 178–​179, 185–​186, 195–​196, 237; see also social anxiety disorder (SAD) applied behavior analysis (ABA) 266 AQ (Autism Spectrum Quotient) 128–​129 ARFID (avoidant and restrictive food intake disorder) 54, 207 Asperger’s 4, 23, 44–​45, 47, 87, 129–​130 assessment 26, 28–​29, 116, 178; of social cognition 29–​30, 49–​57; tools for 16, 18–​19, 127; see also client interview; collateral interviews; parent interview; record review assimilation 130 assumptions: made by clinicians 18; implicit 280

298  Index attention, in autism 10, 143, 146, 161, 162, 269 attention deficit hyperactivity disorder (ADHD) 3, 14, 18, 24, 28, 49, 54, 82, 83, 105, 107, 110, 149, 177, 182, 185, 192–​194, 199, 237, 253, 255, 282 atypical interests 77–​78, 204, 246 auditory stimuli 78, 79, 80 authenticity 278–​279 Autism Diagnostic Interview-​Revised (ADI-​R) 29, 87, 107–​108, 119, 168–​169, 170 Autism Diagnostic Observation Schedule, 2nd edition (ADOS-​2) 16–​17, 29, 87, 160, 166, 167–​171 Autism Good Feeling Questionnaire (Revised Edition, 2021) 104 autism spectrum disorder 47, 108–​109, 121, 185, 195, 197, 206–​207, 211, 262 Autism Spectrum Quotient (AQ) 128–​129 autistic advisory board xiv autistic behaviors 20, 49, 89, 167, 199, 217 autistic burnout 14, 15, 47, 188, 190–​191, 202, 204, 205, 212, 213, 271, 277, 278 autistic imposter syndrome 233–​234, 253–​254 autistic profiles, in cognitive testing 162 autistic relationship building 285 autistic therapy 285 autistic traits xvii, xx, 4, 13, 18, 20, 22, 26, 27, 29, 58, 60, 62, 88, 89, 94, 126, 128, 130, 168, 170, 192, 207–​208, 210, 213, 217, 234, 236–​237, 238 avoidant and restrictive food intake disorder (ARFID) 54, 207 avoidant personality disorder 185, 189–​190 back-​and-​forth flow of conversation 71, 216 balance 78, 79, 154–​155, 216 BAP (broader autism phenotype) 178, 217 BASC3 (Behavior Assessment System for Children, third edition) 131–​132 Behavior Rating Inventory of Executive Functioning 132–​133 behavior vs. experience 88–​90 behavioral manifestations, of autism 9, 10, 22, 183

behavioral observations 26, 111, 131, 141–​158, 164, 166, 167–​168, 232 behaviors: autistic 20, 49, 89, 167, 197, 213; observable 25, 87, 88, 127, 179, 202; repetitive see repetitive behaviors; repetitive and restricted (RRBs) 45, 46, 185, 194, 195–​196, 198, 205, 208, 215, 240, 244; repetitive or idiosyncratic 46, 74–​77; restricted 107–​108; social 142–​143, 201–​202 being misunderstood/​misunderstanding 9, 93, 186 bias: in diagnostic process 20, 59, 87, 94, 116, 201–​202; hostility 196; test 162–​163 big picture: approach to diagnosis 18, 25–​26, 132, 178, 185, 238, 246, 281; in therapy 155 bipolar disorder 14, 53, 177, 182, 202–​204 Black children 20, 63, 202, 257, 291 black-​and-​white thinking 153, 186, 208, 209 blame 6, 11, 24, 25, 31, 250, 267, 269, 271, 278, 279 blunt communication style 144–​145, 154 blunted affect 115, 126, 146–​147, 156, 204, 208, 211 body language 73, 147, 193 body positioning 73, 78, 79, 80, 205 body-​based therapy 285 borderline personality disorder (BPD) 179, 186–​187, 192 bottom-​up processing 92 boys xiv, 16, 118, 192–​193; see also men BPD (borderline personality disorder) 179, 186–​187, 192 breaks, during testing 90, 91, 149 BRIEF2 (Behavior Rating Inventory of Executive Functioning, Second Edition) 132–​133 BRIEF-​A (Behavior Rating Inventory of Executive Functioning, Adult) 132–​133 BRIEF-​P (Behavior Rating Inventory of Executive Functioning, Preschool Version) 132 broader autism phenotype (BAP) 178, 217 burnout, autistic 14, 15, 47, 188, 190–​191, 202, 204, 205, 212, 213, 271, 277, 277

Index  299 camouflaging 4, 13, 15, 47, 90, 101, 143, 170, 171, 233, 271, 278, 279, 281; see also masking Camouflaging Autistic Traits Questionnaire (CAT-​Q) 130–​131 CARS2-​HF (Childhood Autism Rating Scale, High Functioning) 131 casual conversation 147 CAT-​Q (Camouflaging Autistic Traits Questionnaire) 130–​131 CBT (cognitive behavioral therapy) 284–​285 CDI (Children’s Depression Inventory) 133, 213–​214 challenges: co-​occurring xv, 1, 14, 30, 281, 282; core 282–​284; emotional 109, 205; sensory 45, 180, 190, 194, 205, 285; social and communication 45, 47, 199 check-​ins accommodation, at work 289 childhood, symptoms must be traced back to 46–​47 Childhood Autism Rating Scale, High Functioning (CARS2-​HF) 131 Children’s Depression Inventory (CDI) 133, 213–​214 classroom anxiety management 286–​287 clear communication accommodation: at school 286; at work 288–​289 client interview 58, 87–​105, 149, 166 client–​clinician relationship 63 clinical conceptualization 25–​31 clinically significant impairment 47, 245 clinician advisory board xiv clinician–​client relationship 63 clinicians: lack of confidence 17–​18; over-​reliance on own experience of client 19; own feelings about autism 18 clues, diagnostic 51–​56, 61, 93, 112, 141, 191, 210 clumsiness 54, 79, 104 cognition, language, or academic observations or concerns 54 cognitive behavioral therapy (CBT) 284–​285 cognitive profile 54 collateral interviews 26, 28, 107, 111–​116, 116–​117, 142, 160, 168, 235 college accommodations 287–​288 commonly confused diagnoses 177–​217 communication: clear 286, 288–​289; direct 9, 92, 273, 286; literal 21, 54,

77, 108, 109, 144–​145, 147, 215, 216, 270; nonverbal see nonverbal communication; social see social communication; styles of 9, 93, 142, 144–​145, 147, 153, 272, 273; see also nonverbal learning disorder (NVLD); Social Communication Questionnaire (SCQ) communication/​interaction patterns 273–​275 community: cultural 291; influencers 256; with others who share the neurotype 24, 256, 281–​282 compensation 12–​13, 130 compliance training 276, 284 comprehensive measures 131–​132 concrete communication 21, 54, 77, 108, 109, 144–​145, 147, 211, 212, 273 conflict 74, 100, 109, 179, 187, 208, 273 connecting culture xiv–​xv, 19–​21, 62–​64, 127, 157, 162–​163, 201–​202, 255–​257, 290–​292 connection, with like-​minded individuals 281–​282 context: cultural xiv, 20; explicit 21, 122, 123–​125, 124 context blindness 20, 54, 149–​151, 190, 191, 238 context sensitivity 182, 283 convergent validity 26 conversation: back-​and-​forth flow of 71, 216; casual 147; lack of reciprocity in 111; one-​sided 108, 244; rules for 215 co-​occurring challenges, interventions for xv, 1, 14, 30, 285, 286 co-​occurring disorders 48, 282 coordination 54, 181, 216 core challenges, identifying and prioritizing 280–​281 countertransference 96–​97, 235–​236 craving, sensory 54, 70, 80, 120, 148, 181, 188, 194, 209, 237, 238 cultural competency 63–​64 cultural context xiv, 20 cultural sensitivity, of testing materials 162–​163, 255 culture, connecting xiv–​xv, 19–​21, 62–​64, 127, 157, 162–​163, 201–​202, 255–​257, 290–​292 cut-​off scores 16–​17, 28, 119–​120, 129, 131, 160, 171

300  Index DBT (dialectical behavior therapy) 284–​285 decision-​making process 232–​235, 239–​246 declarative language 273 defect within a person, autism as 7 defiance 51, 76 delusions 211, 212, 214 dependent personality disorder 184, 190 depression 53, 81, 124, 126, 133, 146, 177, 205–​206, 258, 282 developmental history 54–​55, 58, 68, 81, 168, 171, 179, 184, 187, 191, 214, 236 Diagnostic and Statistical Manual of Mental Disorders (DSM) 25, 84, 160, 169, 179–​180, 246, 259; III 23; III-​R 23; IV 23, 129, 192–​193; IV-​TR 169; 5-​TR see DSM-​5-​TR diagnostic clues 51–​56, 61, 93, 112, 141, 191, 210 diagnostic criteria 44–​48 diagnostic overshadowing 18, 131, 192, 210 diagnostic process 25, 29, 46, 119, 120, 201 diagnostic tools 16 dialectical behavior therapy (DBT) 284–​285 diet 54 direct communication 9, 92, 273, 289 disability xv, xvi; autism as 7; hidden 14–​15; intellectual xvii, 2, 20, 21, 47, 48 discrepancies between raters 125, 126 disease, autism as 7 disorder, autism as 7 disorganized language 213 disruptive mood dysregulation disorder (DMDD) 81, 178, 180, 206–​207 DSM (Diagnostic and Statistical Manual of Mental Disorders): III 23; III-​R 23; IV 23, 129, 193–​194; IV-​TR 169 DSM-​5-​TR xv, 1, 17, 44–​45, 46–​47, 58, 64, 70, 171, 236, 239, 262; and ADHD 192, 196; differences from ICD-​11 48; similarities with ICD-​11 47 Duvall, Susanne 26, 30, 50–​51, 147, 171, 178, 196, 216 dysmorphic facial features 55 dysregulated sleep 55

early language delay 54 eating disorders 3, 12, 22, 54, 178, 186, 207–​208 EDS (Ehlers-​Danlos Syndrome) 82 EF see executive functioning (EF) Ehlers-​Danlos Syndrome (EDS) 82 emails, unusually long and detailed 155–​156 emotional challenges 109, 208 emotional disconnect 156 emotional regulation 51, 84, 115, 155 emotional dysregulation 51, 107, 155, 179, 181–​182, 186–​187, 201–​202, 240 emotional intensity 181–​182 emotional/​personality measures 133 empathy 16, 50, 55, 89, 119, 180, 186, 188, 189, 243, 255, 260 encopresis 54 endorsements on self-​report measures 213–​214 enuresis 54 environments designed by and for non-​autistics xvii ethnic minority cultures 20, 63–​64, 201, 202 etiquette, waiting room or video session 152 executive functioning (EF) 50, 54, 132–​133, 161, 162, 190, 193, 207, 216, 240, 253, 265, 270, 271, 279 exhaustion 12, 14, 15, 271, 281; see also autistic burnout experience vs. behavior 88–​90 explicit context 21, 122, 123–​125, 124 extended family 62–​63, 114, 251, 278 external sensations 9 extra time accommodation, at school 286 eye contact 12, 15, 19, 50, 52, 69, 73, 89, 100, 125, 142–​143, 146, 147, 157, 195–​196, 208, 209, 250, 269–​270 facial expressions 20, 52, 61, 111, 160, 164, 193, 205, 242, 243 fairness 77, 102, 244 false beliefs 207, 208, 210 family history 63, 81, 82–​84, 186, 191, 204, 210 family system 62–​63, 272 family therapy 272 feedback sessions 59–​60, 63, 83, 105, 249, 251, 252, 253, 254, 255, 256, 257–​260

Index  301 feelings: client’s 53, 72, 147, 180–​181, 187, 273; clinician’s 18, 31, 261; validation of 275 female phenotype, of autism 4 fight, flight, or freeze mode 270, 274 filler words 147 findings, meaningful discussions about your 249–​262, 250 “fine print” in Diagnostic and Statistical Manual 179–​180 flat affect 115, 126, 146–​147, 156, 208, 211, 212 flexibility: with age ranges 162; difficulty with 7, 46, 68, 69, 76–​77, 102, 153, 154, 181, 237, 240, 244; in parent interviews 60; of rating scales 128, 164, 167; traits and diagnoses that can be confused with autism 181, 189–​190, 193, 196, 201, 203, 204 flow 288 focus 26, 77, 103, 111, 143, 149–​150, 194, 205, 212, 256; hyper-​ 53 friendship 19, 27, 50, 51, 52, 55, 59, 67, 72, 74, 100, 101, 113, 118, 120; traits and diagnoses that can be confused with autism 181, 185, 194, 195–​196, 207; see also relationships functioning: adaptive 51, 82, 97, 132, 181, 208, 210, 278; executive see executive functioning (EF); high xvii, xviii; intact 256; intellectual see intellectual functioning; low xvii, xviii functioning labels, avoidance of xvii gastrointestinal (GI) issues 12, 51, 54, 82, 259 gathering information xv, 159, 245–​246 GC (intellectually gifted children) 180–​182 gender xiv, xv, xviii, 4, 16, 28, 296 gender identity 55, 191 gender spectrum 130, 160, 165, 246 general personality disorder (GPD) 183–​184 general principles: for behavioral observations 141–​144; for client interview 90–​97; for communicating the findings 250–​255, 250; for organizing and integrating data 235–​238; for parent interview 60–​62; for rating scales 118–​127, 124, 126; for social cognition evaluations 24–​25,

49–​51; for social cognition testing 159–​162; for traits and diagnoses that can be confused with autism 178–​180 genetic disorders 55 gestures 20, 52, 73, 147, 151, 168, 193 GI (gastrointestinal) issues 12, 51, 54, 82, 259 giftedness, intellectual 177, 180–​182 girls xiv, 4, 67, 125, 154, 181, 182, 192–​193, 246; see also women GPD (general personality disorder) 183–​184 GRAPES acronym 203 greeting 28, 71, 142–​143, 215, 241 group interactions 72 hallucinations 124, 125, 211, 212–​213, 214–​215 headaches 14, 51, 55, 82 healthcare, access to 3 healthy lifestyle 282 hidden disability 14–​15 high functioning xvii, xviii high-​context cultures, communication in 20–​21 highly uneven cognitive profile 54 historical perspective, on autism 3–​4 histrionic personality disorder 189 homeostasis 282–​283 hostility bias 196 human biodiversity, autism as part of 5–​8, 7, 259 hunger 9, 25, 149 hygiene 27, 55, 80, 128, 142, 211, 212 hyper-​focus 53 hyperlexia 54, 216 (hypo)mania 202–​204 ICD-​11 see International Classification of Diseases 11th Revision (ICD-​11) identity-​first language xvi–​xvii impairment, clinically significant 47, 245 implicit assumptions 280 inclusivity xvi, xvii, 127, 250–​251 individualized work accommodations 290 inflexibility see flexibility influencers 256 information processing 9, 11 initiation of interactions 71 inner experience 13, 25, 71, 89, 93, 94, 98, 101, 105, 123, 183, 269

302  Index insight, client’s 89, 90, 98, 122, 123, 142, 143, 251, 258, 260, 283 intact functioning 260 intellectual disability xvii, 2, 20, 21, 47, 48 intellectual functioning xvii, 8, 20, 51, 98, 119, 128, 129, 132, 190, 258, 260 intellectual giftedness 177, 180–​182 intense interests 16, 50–​51, 66, 77, 96, 110, 119, 120, 189, 198, 202, 212, 238, 246 internal experience 17, 25, 141, 142, 237, 268 internal bodily sensations 9, 54, 79, 80, 133, 156, 279 internal narrative, changing the 187, 266–​268 International Classification of Diseases 11th Revision (ICD-​11) 1, 44–​45, 46, 64, 171; differences from DSM-​5-​TR 48; similarities with DSM-​5-​TR 47 interoception 9, 54, 79, 80, 133, 156, 283 interoceptive awareness 123, 149, 186, 205–​206, 208, 282–​283, 284, 285 interrupting 142, 193, 216 interventions 6, 14, 24, 30, 51, 55, 105, 111, 156, 187, 265–​266, 272, 273, 283, 284–​285, 290 interviews: client 58, 87–​105, 149, 166; collateral 26, 28, 107, 111–​116, 116–​117, 142, 160, 168, 235; teacher 111–​113 intonation 52, 73, 89, 205, 216 invalidation 13–​14, 187 item misinterpretation, in self-​report measures 123–​125, 124 jargon 252–​253 job accommodations 290–​292 joint hypermobility 55 justice 102, 180–​181, 260 keeping friends 51, 52, 59, 74, 181, 238 lack of clinician confidence 17–​18 language: body 73, 147, 193; declarative 273; disorganized 213; identity-​first xvi–​xvii; issues with 200, 210; person-​ first xvi; repetitive 146, 181; unusual 146, 213 law of parsimony 25–​26, 178–​179

learning disorders 105, 231, 240, 241; see also non-​verbal learning disorder (NVLD) left-​handedness 5–​6 like-​minded individuals, connection with 281–​282 literal communication 21, 54, 77, 108, 109, 144–​145, 147, 215, 216 lived experience, of client 19, 25, 179, 196, 231 lost generation of autistic adults 18, 22–​23, 27 low functioning xvii, xviii low muscle tone/​coordination issues 181 low-​context cultures 20–​21 lying 72, 188 making friends 181, 238 making the implicit explicit 145–​146 MASC-​2 (Multidimensional Anxiety Scale for Children) 133 masking 4, 15, 25, 26–​27, 29, 126, 130, 183, 186, 281; see also camouflaging maturity 52, 66, 90, 98 meaningful discussions about your findings 249–​262, 250 measures: comprehensive 131–​132; emotional/​personality 133; executive functioning 132–​133; multidimensional 87, 166–​171; performance validity 161; self-​report 118–​134, 124, 126, 213–​214 medical model 6, 7 medical symptoms 208, 240, 241 medical/​developmental history or concerns 54–​55 medication 14, 60, 81, 92, 215, 282, 288, 289, 290–​291 meltdowns 15, 51, 53, 54, 81, 82, 155, 180, 206–​208 memory 55, 83, 142, 216, 260 men xiv 16–​17, 83, 170; see also boys mental health 3, 18, 22, 24, 186, 238 MIGDAS-​2 (Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition) xxi, 60, 87, 95, 149, 166–​167 Minnesota Multiphasic Personality Inventory (MMPI) 123, 133 minority ethnic cultures 20, 63–​64, 201, 202

Index  303 misdiagnosis xx, 20, 23–​24, 262; see also missed diagnosis; undiagnosed autism misinterpretations on various measures 123–​125, 124 mismatch between an autistic’s nervous system and the world 9–​10 missed diagnosis xx; see also misdiagnosis; undiagnosed autism misunderstanding/​being misunderstood 9, 93, 186 MMPI (Minnesota Multiphasic Personality Inventory) 123, 133 Monteiro Interview Guidelines for Diagnosing the Autism Spectrum, Second Edition (MIGDAS-​2) xxi, 60, 87, 95, 149, 166–​167 motivation 147, 155, 188, 189, 212, 241, 283; social 10, 52, 62, 83, 111, 127, 193–​194, 195 motor issues 54, 191 movement 9, 51, 74–​75, 80, 101, 279–​280, 281, 290 Multidimensional Anxiety Scale for Children (MASC-​2) 133 multidimensional measures 87, 166–​171 multi-​grade patterns 113 narcissistic personality disorder 188–​189 narratives, changing of: internal 266–​267; of others 268–​269 natural form of human variation, autism as 5–​8, 7, 259 negative symptoms, of psychosis 211, 212, 214 neglect 187, 191, 199, 210, 211 nervous system 6–​8, 9, 11, 57, 194, 258, 260 neuro-​crash 188, 277, 278 neurodiversity paradigm 5–​8, 7, 259 neurodiversity-​affirmative practice xvi, 24, 31, 118, 128, 141, 166, 167, 169, 250, 250, 259, 267, 285 neuropsychological testing 19, 161, 171–​172 neurotypical xvii, 11; passing as 170 noise 9, 75, 78, 80, 91, 108, 154, 278, 290 non-​judgmental self-​understanding 24 nonverbal communication 20, 27, 45, 52, 68, 69, 70, 73, 94, 100, 111, 181, 186, 193, 205, 215, 237, 239, 242, 243–​244, 286

non-​verbal learning disorder (NVLD) 162, 178, 216–​217 #nothingaboutuswithoutus xiii–​xiv NUTS acronym 251 NVLD (non-​verbal learning disorder) 162, 178, 216–​217 observable behaviors 25, 87, 88, 127, 179, 202 obsessive-​compulsive disorder (OCD) 18, 107, 109, 110, 124, 133, 177, 198–​199 obsessive-​compulsive personality disorder (OCPD) 190–​191 Occam’s Razor 25–​26, 238 OCD (obsessive-​compulsive disorder) 18, 107, 109, 110, 124, 133, 177, 198–​199 OCPD (obsessive-​compulsive personality disorder) 190–​191 ODD (oppositional defiant disorder) 53, 177, 199, 262 one-​on-​one interactions, difficulty with 52, 72, 89, 154 one-​sided conversation 108, 244 ongoing problem-​solving accommodation, at school 287 openness to services 290–​291 oppositional defiant disorder (ODD) 53, 177, 199, 262 oral vs. written expression 96 other people’s anxiety, management of 269–​270 overlaps between gifted children and autistic children 180–​181 over-​reliance on clinician’s own experience of the client 19 over-​reporting, in self-​report questionnaires 122 over-​responsivity, sensory 77, 78–​79, 148, 180, 212, 214 overriding goals, on which general principles are based 265 overwhelm 9, 25, 52, 78, 84, 91, 103, 152, 188, 200, 208, 271, 273, 274, 278, 280, 284, 286, 287, 288 PAI (Personality Assessment Inventory) 133 pain 9, 14, 51, 55, 79, 103, 245; accidentally inflicted by a professional 275 paranoia 124, 211, 212, 291 paranoid personality disorder 185–​186

304  Index parent interview 58–​85 parsimony, law of 25–​26, 178–​179 passing as non-​autistic see camouflaging; masking patterns: in comments 110; communication/​interaction 270–​272; of misinterpretations on measures 123; multi-​grade 113 pauses, in conversation 147, 153 PDD-​NOS (pervasive developmental disorder-​not otherwise specified) 23, 44–​45, 47, 171 PDs (personality disorders) 24, 29, 177, 180, 182–​192 peer relationships 216, 289 peers 45, 52, 66, 71, 72, 74, 109, 110, 114, 121, 154, 160, 171, 181, 193, 206–​207, 243, 244 perfect pitch 55, 83 perfectionism 51, 53, 77, 182, 190, 208 performance validity measures 161 personal space 73, 149, 181, 193 Personality Assessment Inventory (PAI) 133 personality disorders (PDs) 24, 29, 177, 180, 182–​192 personality/​emotional measures 133 person-​first language xvi pervasive developmental disorder-​not otherwise specified (PDD-​NOS) 23, 44–​45, 47, 171 phobias 53, 81 physiological dysregulation 55 pink flags 50–​51, 185, 216 planned recovery time 278 play 52, 60, 66, 76, 108, 111, 194, 209 positive symptoms, of psychosis 211, 212, 214 postural orthostatic tachycardia syndrome (POTS) 55, 82 preferences: for communication 90–​91; for referrals 291–​292 prevalence: of autism 8, 21–​24; of autism in anorexia nervosa 207; of autism in avoidant and restrictive food intake disorder 207 prior diagnoses 18, 51, 110, 116, 192–​193, 262 processing speed 162, 182, 254, 274 profiling, concern that a professional is 255–​256 proprioception 73, 78, 79, 80, 209

psychotherapy environment, behavioral observations in a 152–​156 psychotic disorder 14, 211–​215 puberty 283 RAADSR (Ritvo Autism Asperger Diagnostic Scale-​Revised) 129–​130 RAD (reactive attachment disorder) 178, 210–​211 radical downtime 283 rating scales 118–​134, 124, 126 RCMAS-​2 (Revised Children’s Manifest Anxiety Scale) 133 RDI (Relationship Development Intervention) 266 reactive attachment disorder (RAD) 178, 210–​211 reading 54, 55, 77, 216; of signals from the body 186; of social cues 66, 115, 181, 195–​196, 208, 238, 250 reciprocal conversations 52, 196 reciprocity 13, 45, 68, 70, 71–​72, 111, 181, 198, 208, 238, 239, 241, 242, 243 recommendations 265–​292 record review 26, 107–​117 recovery 47, 277, 278, 288 referrals 285, 290, 291–​292 reimagining a life 280 rejection 189–​190, 291 relationship building: accommodation at school 286; autistic 285 Relationship Development Intervention (RDI) 266 relationship management 45, 74 relationships 52, 67, 68, 69, 93–​94, 100–​101, 154–​155, 186, 239, 244; peer 216, 289 repetitive and restricted behaviors (RRBs) 45, 46, 185, 194, 198, 204, 211, 215, 240, 244; see also repetitive behaviors; restricted behaviors repetitive behaviors 4, 46, 47, 101–​102, 109, 115, 127, 181, 194, 195, 196–​197, 204, 209 repetitive language 146, 181 repetitive or idiosyncratic behavior 46, 74–​77 repetitive play themes 209 restricted affect 146–​147, 242 restricted behaviors 107–​108 see also repetitive behaviors; repetitive and restricted behaviors (RRBs)

Index  305 restricted interests 46, 127, 194, 246 Revised Children’s Manifest Anxiety Scale (RCMAS-​2) 133 rigidity 51, 120, 153, 238, 244 Ritvo Autism Asperger Diagnostic Scale-​Revised (RAADSR) 129–​130 Roberts Apperception Test (Roberts-​2) 165–​166, 249 role definition accommodation, at work 290 RRBs (repetitive and restricted behaviors) 45, 46, 185, 194, 198, 204, 211, 215, 240, 244; see also repetitive behaviors; restricted behaviors rules for conversation 215 ruling out autism 19, 50, 168, 169 SAD (social anxiety disorder) 120, 179, 180, 195–​197 safe spaces, creation of 270–​272 sample worksheet 243–​245 SCARED (Screen for Child Anxiety REelated Disorders) 133 schizoid or schizotypal personality disorder 185 schizophrenia 3–​4, 14, 23, 211, 212, 214 school: accommodations 286–​288; refusal 49, 51, 53 scores: cutoff 16–​17, 28, 119–​120, 129, 131, 160, 170; standard 28, 162; test 28, 131, 141, 159, 160, 162–​163, 232, 235, 252–​253 SCQ (Social Communication Questionnaire) 118, 119–​121 Screen for Child Anxiety Related Disorders (SCARED) 133 scripts, for social situations 101, 108 seizures 55 selective mutism (SM) 53, 177, 180, 197–​198 self-​advocacy 62, 208, 260, 266, 276 self-​compassion 31, 260, 267 self-​knowledge 96, 266, 267, 276 self-​report measures 118–​134, 124, 126; endorsements on 213–​214 sense of balance 79, 154 sense of humor 19, 50, 55, 62, 83, 154, 237 sense of self 13, 14, 154 sensory challenges 45, 180, 190, 195, 209, 285 sensory craving 54, 70, 80, 120, 148, 181, 188, 194, 209, 237, 238

sensory differences 46, 69, 129, 194, 204, 240, 279 sensory experiences 80–​81, 90, 103–​104, 148, 154, 167, 211, 212, 279 sensory input 51, 267, 278, 280 sensory issues 47, 72, 78–​81, 200, 238 sensory over-​responsivity 77, 78–​79, 148, 180, 212, 214 sensory responses 54, 148, 152, 237 sensory sensitivities 103, 107, 108, 120, 207, 216 sensory supports accommodation 287, 290 sensory under-​responsivity 79 sex education 283 shame 6, 24, 31, 257, 261, 268, 271, 278, 279 shared interests 52, 281 shutdowns 15, 51, 53, 88, 103, 191, 273 signals from muscles and joints 73, 78, 79, 80, 209 SLDT (Social Language Development Test) 162, 163–​164, 253 sleep: decreased need for 202, 203; difficulty with 12, 49, 55, 208, 209, 211; during the day 280 SM (selective mutism) 53, 177, 180, 197–​198 smells 78, 79, 80, 103, 207 social and communication challenges 45, 47, 200 social anxiety 24, 115, 149, 152, 179, 185, 195–​196, 237 social anxiety disorder (SAD) 120, 179, 180, 195–​197 social behaviors 142–​143, 201–​202 social coaching 52, 71, 108, 275 social cognition assessment, knowing when to consider a 49–​57 social cognition evaluations, general principles for 24–​25 social cognition rating scales 127–​131 social cognition testing 159–​172 social communication 45, 47, 48, 109, 127, 192–​193, 200, 209, 215, 217, 238, 242, 245 Social Communication Questionnaire (SCQ) 118, 119–​121 social concerns 52 social development 61, 68, 162 social disconnect 26–​27

306  Index social expectations 11, 95, 142, 179, 189, 278, 287 social immaturity 52 social interactions 15, 45, 52, 61, 93–​94, 99–​100, 101, 107, 108, 109, 121, 126, 130, 149, 168, 189, 193, 196, 208, 209, 289 social interactions accommodation, at work 289 social intuition 12, 142 Social Language Development Test (SLDT) 162, 163–​164, 253 social motivation 10, 52, 62, 83, 111, 127, 193–​194, 197 social niceties 71, 142, 143, 153, 154, 231, 243 social observations 52 social (pragmatic) communication disorder (S/​PCD) 178, 215–​216 social reciprocity 13, 45, 68, 70, 71–​72, 111, 181, 198, 208, 238, 239, 241, 242, 243 social relationships 93–​94, 208 Social Responsiveness Scale (SRS-​2) 127–​128 social skills 45, 51, 62, 85, 112, 115, 147, 193, 195, 238, 239, 265, 267, 268–​269, 279–​280 social supports accommodation, at school 287 social/​emotional reciprocity 45, 208, 238 somatic issues and therapy 51, 191, 283, 285 SPACE (Supportive Parenting for Anxious Childhood Emotions) 272 space for recovery 278 S/​PCD (social (pragmatic) communication disorder) 178, 215–​216 speaking 52, 73, 203 special events accommodation, at school 287 special interests 210, 272, 284 SPIN groups 284 SRS-​2 (Social Responsiveness Scale) 127–​128 standard scores 28, 162 standard treatment protocols 53 standardized assessment tools, too much reliance on 18–​19

stimming 9, 25, 101–​102, 181, 199, 204, 265, 271, 279 storytelling mode, coaxing the parents into 60, 64, 112 strengths, autistic xvii, 1, 7, 11, 30, 50, 58, 59, 62, 69, 70, 81, 83, 90, 94, 104, 112, 114, 143, 161, 178, 216, 232, 233, 234, 240, 241, 252, 253, 258, 260, 261, 266, 268, 284, 292 structured cognitive testing 147 subjective experience, of client 19, 25, 179, 197, 231 “superpowers” 55 Supportive Parenting for Anxious Childhood Emotions (SPACE) 272 symptom-​by-​symptom approach to diagnosis 25–​26 symptoms must be traced back to childhood 46–​47 tactile stimuli 78, 79, 80 talk therapy 285 talking about feelings 53 taste 78, 79, 80, 103, 207 teacher interviews 111–​113 teachers 27, 70, 81, 84, 110–​111, 116–​117, 125, 126, 243, 244, 286–​288 test bias 162–​163 test names 252–​253 test scores 28, 131, 141, 159, 160, 162–​163, 232, 235, 252–​253 testing environment, behavioral observations in 144–​151 textures 9, 78, 103, 207 therapy 81, 83–​84, 93, 98, 112, 114, 134, 155, 156, 262, 269–​270, 274, 278; autistic 285; body-​based 285; cognitive behavioral (CBT) 284; dialectical behavior (DBT) 284–​285; family 272; somatic 283, 285; talk 285 thirst 9, 25, 79, 103, 149, 156 time for recovery 278 top diagnostic clues 51–​56 traits that can be confused with autism 177–​217 trauma 50, 133, 155, 178, 186, 187, 190, 191, 198, 204–​206, 207, 208, 209, 262, 277, 280, 281 treatment 3, 7, 22, 49, 51, 53, 184, 187, 292 trust, building 58, 59, 90, 91, 116, 257, 275, 291

Index  307 uncertainty, intolerance of 198 under-​reporting, in self-​report questionnaires 122–​123 under-​responsivity, sensory 79 understanding of relationships 154 undiagnosed autism xiv, 15–​19, 22, 30, 62, 184, 190–​191, 207, 213, 217 unexpected change 53 unfamiliar environments 144 unplanned crash 278 unstructured social activities 52 unusual language 146, 213 unusually long and detailed emails 155–​156 use of objects 75–​76, 209, 237, 279 validation, of client 13–​14, 24, 97, 115, 163, 187, 267, 275–​6, 285 vestibular stimulation 78, 79, 80 victimization 14, 52, 276 video session etiquette 152 Vineland Adaptive Behavior Scales (Vineland-​3) 132 visual aids 253

visual stimuli 78, 79, 80 vocal intonation 52, 73, 89, 205, 216 vocal volume 17, 52, 146, 154, 181 WAIS-​IV (Wechsler Adult Intelligence Scale-​Fourth Edition) 164 waiting rooms 63, 142–​143, 144, 149, 152, 153 weaknesses, in autism 104–​105, 143, 161, 162, 216, 268 Wechsler Adult Intelligence Scale-​Fourth Edition (WAIS-​IV) 164 Wechsler Memory Scale-​Fourth Edition (WMS-​IV) 164 White people 16, 20, 63, 163, 165 WMS-​IV (Wechsler Memory Scale –​ Fourth Edition) 164 women xiv, xix, 4, 16–​17, 170, 192, 207, 246; see also girls work accommodations 288–​290 worksheet 239–​246 written documentation, provision to client of 262 written vs. oral expression 96