The Politics of Autism The Politics of Autism Bryna Siegel, PhD 1 1 Oxford University Press is a department of the University of Oxford. It furthers the University’s objective of excellence in research, scholarship, and education by publishing worldwide. Oxford is a registered trade mark of Oxford University Press in the UK and certain other countries. Published in the United States of America by Oxford University Press 198 Madison Avenue, New York, NY 10016, United States of America. © Oxford University Press 2018 All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, without the prior permission in writing of Oxford University Press, or as expressly permitted by law, by license, or under terms agreed with the appropriate reproduction rights organization. Inquiries concerning reproduction outside the scope of the above should be sent to the Rights Department, Oxford University Press, at the address above. You must not circulate this work in any other form and you must impose this same condition on any acquirer. Library of Congress Cataloging- in- Publication Data Names: Siegel, Bryna, author. Title: The politics of autism / by Bryna Siegel. Description: New York, NY : Oxford University Press, [2018] | Includes bibliographical references and index. Identifiers: LCCN 2017053462 | ISBN 9780199360994 (alk. paper) Subjects: LCSH: Autism—Epidemiology—Government policy—United States. | Autism—Diagnosis—United States. | Autistic people—Education—United States. Classification: LCC RC553.A88 S536 2018 | DDC 362.196/8588200973—dc23 LC record available at https://lccn.loc.gov/2017053462 9 8 7 6 5 4 3 2 1 Printed by Sheridan Books, Inc., United States of America For David CONTENTS Preface ix Introduction xi 1. The Politics of Autism 1 2. The Politics of Autism Diagnosis 15 3. The Psychiatric Diagnosis Industry: The APA and Its DSM 51 4. Autism Education and the Illusions of Inclusion 87 5. Educating Youth With ASDs for Their Future 121 6. Autism Health Economics 161 7. The Allure of Complementary and Alternative Medicine 189 8. The Vaccine Wars 227 9. False Prophets of the Human Genome 251 Conclusions: Priorities for Our Autism Community 271 Acknowledgments 275 References and Suggested Reading 277 Index 315 PREFACE I worry that America is becoming a mob. Twitter, Facebook, Instagram, Google+, and similar well- subscribed sources for information entice readers to adopt articles of faith, sometimes in 140 characters or less. The Internet, the once un- potholed utopian information superhighway of the 1980s and 1990s, is now the place where one goes to become part of an in- group endorsing one’s own ideas. One earns one’s stripes as part of an in-group, posting black-and- white declarations of affinity. We are beginning to see a historical timeline of strong online identifications— with Trumpism, and the Freedom Caucus, to Black Lives Matter and #MeToo, to Alt-Righters, to recruiters for ISIS. Not coincidentally, we experience divisiveness about immigration, guns, abortion rights, climate change, and growing racial divisiveness though many hoped Obama had left us a postracial America. How we know and understand things has fundamentally changed: Articles of faith that underpin such groups are just that, and not infrequently, inconvenient data are damned. What’s good, and what is bad about how we learn things these days? My mi- crocosm for exploring these kinds of disturbing developments is the politics of autism. I’ve spent my professional life trying to help children and families living with autism, but always with an eye to influencing social policy. I’ll discuss the expansion and seeming popularity of the diagnosis of autism, the hysteria around vaccines and autism that have impacted pediatric public health, and the mystique of the autistic savant and how misconstruction of what autism is has thrown up barriers to effectively planning for the limitations the vast majority of adults with autism inevitably face. Social media and ratings- driven TV have made sound bites of what we are told we need to know. Colorful brain images on PBS or cover page stories in Time or Newsweek about autism lift spirits by suggesting what is possible or may be possible soon, but may turn out not to be true. Such sound bites di- rect us away from understanding the sea change needed to improve the lives of people living with autism, as well as many other neuropsychiatric disorders. It redirects our attention from the poignancy of families striving to do their best with less-than- perfect children, and who find little succor in what brain imaging or genetics may tell them— someday. The vulnerability of truth combined with American optimism may have led us to the edge of a crevasse where many families of children with autism stand as they gaze toward their child’s adult years. We’ve not built them a bridge or a road to travel onward. This book is ix x { Preface an effort to figure out what we need to do, how to build some new roads, so the future of children with autism and their families is better. Key references appear at the end of each chapter. More extensive references appear at the end of the book, organized by chapter, with references for each chapter divided into two sections: The first section for each chapter is citations from popular media—books, magazines, newspapers, television, or URLs. The purpose is to illustrate where and how ideas about autism in the general culture are formed. The second section for each chapter lists scientific writing organized by major subtopics to highlight what is or is not yet known from research. This organization of the references is designed to facilitate use of this book as a reference for college and graduate coursework and to further scholarly investigation. Where possible, both chapter Notes and the References organized by chapter at the end of the book include a URL for the citation; a PDF of these references can be downloaded (http:// www.brynasiegel.com/ politicsofautism/ ), and the links to the references are available on the website. INTRODUCTION I met my first child with autism when I was a 19- year- old undergraduate, in about 1972. I am now in my early 60s. The most recent family with a child with autism is probably someone I met earlier today or yesterday. In all that time, the “autism” landscape has changed: In 1972, autism had not quite emerged from its Dark Ages. In the Dark Ages of autism, mothers were strongly suspected of an early, profound, unconscious rejection of their infant, and that the ensuing failure to bond resulted in the solipsistic autistic aloneness with which the child faced the world. Leo Kanner, an American child psychiatrist, was the first to describe “early infantile autism,” a condition where the child acted as if others were not mean- ingful to constructing his or her emotional life.1 Early infantile was meant to refer to the earliest stages of infancy when the infant “takes,” but has not yet de- veloped a capacity to “give” in his or her social contact. While Kanner himself did not argue that parents were the cause, he acknowledged that many parents who sought out his academic expertise were not the warm, fuzzy parents he felt had “the right stuff” to naturally break through their child’s self- isolation. Others, like Bruno Bettelheim, a professor of mine, who I talk about more in Chapter 3, did frankly posit that “refrigerator mothers” caused autism. Bettelheim, in his book The Empty Fortress, opined that these distant, une- motional parents that Kanner had described had in fact caused their child’s difficulties, and interventions like “parentectomy” (basically residential place- ment) were the child’s best chance to achieve wellness.2 This was basically where the state of our understanding of autism was in 1972— when I first met children with autism. I’d grown interested in autism as a way to explore the themes guiding the study of psychology of the day— “free will” versus “determinism,” specifically— in child psychology, this boiled down to “nature” versus “nurture.” A determinist would argue that the behavior that made for autism was pure nature or biology; a humanistic viewpoint, on the other hand, argued that nurture or the application of psychotherapeutic- induced change could make all the difference. Autism, it was thought, was the most extreme example of nurture gone awry. I wanted to see that for myself. So, in 1972, I got a summer volunteer position at Creedmore, a New York City welfare hospital, at a children’s inpatient psychiatric unit. These children were like none I had seen: Just like in The Empty Fortress that I had read months earlier, these children danced on their toes, twirled in circles, flapped their hands, and talked only in echoes. My attempts to help with simple activities xi xii { Introduction like joining a group for a story time, coloring, or even eating with utensils were met with vacant stares, even with getting up and just sprinting away. I wanted to understand why. At lunchtime, I was allowed to read their medical records. One girl was the seventh of nine born from different fathers to a schizophrenic mother. Another had been found after being abandoned by his drug-addicted parents. “No wonder they created their own worlds!” I thought at the time. Fascinated, I wanted to learn more, so I signed up for a 3- month teaching in- ternship at Elwyn Institute, a long-established, well- funded private residential school for the developmentally disabled outside Philadelphia, Pennsylvania. This time, the children in my class did not come from the poorest parts of New York City, but the wealthiest.