A History of Autism Conversations with the Pioneers

A History of Autism Conversations with the Pioneers Adam Feinstein A John Wiley & Sons, Ltd., Publication Praise for A History of Autism “No one has attempted to write the history of autism so comprehen- sively before. Adam Feinstein’s highly readable but remarkably thorough book contains a treasure-trove of conversations with the scientists, clinicians, lobbyists, and parents who have shaped the development of autism in both research and policy. The timing of this book is opportune, as the pioneer generation becomes ‘emeritus.’ History-telling is never wholly objective, but Feinstein (the science-writer, parent, and international con- ference organizer) is better placed than almost anyone to document the extraordinary changes that have happened to the autism community world- wide since the 1940s onwards. This book is an important contribution to the history of medicine and a unique resource for future generations who will build on their predecessors.” Simon Baron-Cohen, Director, Autism Research Centre, Cambridge University “The material in A History of Autism is selected and worded with such enthusiasm, such personal engagement, that it is contagious. I couldn’t stop reading. This book is a monument; a milestone that we all owe to autism’s history.” Theo Peeters, Centre for Training in Autism, Belgium “From the many years before Kanner’s 1943 description when the condition was known by other names, through all that has happened to the present time, along with a glimpse of the future, Feinstein explores the evolutionary journey of autism in an enlightened, educational, and entertaining fashion. Nowhere will you find a more comprehensive, care- fully documented and eminently readable account of the history of autism than this book.” Darold A. Treffert, University of Wisconsin Medical School “Adam Feinstein provides an essential historical context for autism; one of the most contentious childhood diagnoses today. This is a grounding book for those ready to look beyond pet theories, ‘magic bullets’ and ‘treatment of the day.’ This book will navigate you beyond the idea of any ‘one autism’ and leave you with the clarity, hope and opportunity for new directions inherent in that realization.” Donna Williams, author and autism consultant “Of interest to researchers, clinicians and parents, this volume provides a detailed perspective on the history of autism and related disorders. Writing from the perspective of a parent, Adam Feinstein brings the people and concepts vividly to life in this insightful and comprehensive book.” Fred R. Volkmar, Child Study Center Yale University “The field of autism has been in need of a solid historical account of the many changes since Kanner first coined the term autism in 1943, and Feinstein’s book finally fills that gap. His novel approach of telling the story of autism through interviews with the pioneers, their associ- ates, and their family members is creative and fascinating. What wonderful stories these people tell, how well the author passes the stories on, and what a terrific way to relate the history of the field. “Feinstein’s deep understanding of the field leads to excellent ques- tions and penetrating discussions. This wonderful combination will be irresistible to anyone interested in how the field got to where it is now and where it might be going.” Gary B. Mesibov, University of North Carolina School of Medicine “This book outlines, from an unusual point of view, the history of the development of the concept of the spectrum of autistic conditions. The author’s account is brought to life in fascinating detail by his interviews with leading professionals (or their children who survive them), parents, and adults with autistic conditions. He reveals the controversies between professionals and the problems that still exist for families in different countries, as well as the progress that has been made. A book to be highly recommended to anyone with an interest in autism.” Lorna Wing, Honorary Consultant to the National Autistic Society, UK “Adam Feinstein’s book is a valuable contribution to the autism litera- ture. No other author has sought out the important scientific contributors to autism research; it is fascinating to read their current views, as well as a summary of their original contributions.” Susan E. Folstein, John P. Hussman Institute of Human Genomics “The story of autism only began remarkably recently. In this unique book you can listen to the voices of the opinion makers and learn what they thought about autism in times past and present. Pioneers who pushed the boundaries of knowledge since autism was first identified talk freely about their ideas and experiences.” Uta Frith, University College London A History of Autism Conversations with the Pioneers Adam Feinstein A John Wiley & Sons, Ltd., Publication This edition first published 2010 © 2010 Adam Feinstein Blackwell Publishing was acquired by John Wiley & Sons in February 2007. Blackwell’s publishing program has been merged with Wiley’s global Scientific, Technical, and Medical business to form Wiley-Blackwell. Registered Office John Wiley & Sons Ltd, The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, United Kingdom Editorial Offices 350 Main Street, Malden, MA 02148–5020, USA 9600 Garsington Road, Oxford, OX4 2DQ, UK The Atrium, Southern Gate, Chichester, West Sussex, PO19 8SQ, UK For details of our global editorial offices, for customer services, and for information about how to apply for permission to reuse the copyright material in this book please see our website at www.wiley.com/wiley-blackwell. The right of Adam Feinstein to be identified as the author of this work has been asserted in accordance with the UK Copyright, Designs and Patents Act 1988. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, recording or otherwise, except as permitted by the UK Copyright, Designs and Patents Act 1988, without the prior permission of the publisher. Wiley also publishes its books in a variety of electronic formats. Some content that appears in print may not be available in electronic books. Designations used by companies to distinguish their products are often claimed as trademarks. All brand names and product names used in this book are trade names, service marks, trademarks or registered trademarks of their respective owners. The publisher is not associated with any product or vendor mentioned in this book. This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold on the understanding that the publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional should be sought. Library of Congress Cataloging-in-Publication Data Feinstein, Adam, 1957– A history of autism : conversations with the pioneers/Adam Feinstein. p.; cm. Includes bibliographical references and index. ISBN 978-1-4051-8654-4 (hb : alk. paper) – ISBN 978-1-4051-8653-7 (pb : alk. paper) 1. Autism–History. I. Title. [DNLM: 1. Autistic Disorder–history–Interview. 2. History, 20th Century–Interview. WM 11.1 F299h 2010] RC553.A88F45 2010 362.196′85882–dc22 2010006818 A catalogue record for this book is available from the British Library. Set in 10/12.5pt Plantin by Graphicraft Limited, Hong Kong Printed in Malaysia 1 2010 Unless otherwise indicated, all photographs are the author’s. For Johnny Contents Acknowledgments ix Foreword by Dame Stephanie Shirley xv Introduction 1 1 The Two Great Pioneers 9 2 The 1950s: The Seeds of Understanding 37 3 Blaming the Parents 54 4 The 1960s: The Parents Fight Back 76 5 The Two Teaching Pioneers 117 6 The 1970s: Major Steps Forward 139 7 Definition, Diagnosis, and Assessment: The History of the Tool 165 8 The 1980s and 1990s: Theories and Concepts 203 9 Autism in the Developing Nations 233 10 Where the Future Lies 265 Notes 298 Bibliography 339 Index 367 vii Acknowledgments First and foremost, I owe an immense debt of gratitude to Dame Stephanie Shirley. This book would not have been possible without her enormous generosity and support in financing my travels around the world to speak to the pioneers in the field of autism. I must express my huge appreciation to Professor Uta Frith, who was also on the steering committee which saw this book through to its com- pletion and, as one of the world’s foremost authorities on autism, gave me friendly advice combined with constructive criticism. The other member of the steering committee, alongside Dame Stephanie and Uta, was the project manager, John Carrington, whose calm and smooth running of the financial elements of the whole oper- ation was enormously helpful. Through my travels, I have spoken to hundreds of people who pro- vided many hours of insights. I could not possibly thank them all and I apologize for any that I have inadvertently omitted. In London, I have to express my profound gratitude to Dr. Lorna Wing and her colleague, Dr. Judith Gould, for our many conversations which have clarified a vast number of issues. I am doubly indebted to Dr. Wing because she also kindly agreed to act as external reviewer of the manuscript. I am also extremely grateful to Professor Sir Michael Rutter for his invaluable insights, both in person and by telephone and e-mail, and to his colleagues at London’s Institute of Psychiatry, Dr. Patricia Howlin and Dr. Francesca Happé. I would also like to thank Marc Bush for his insights into Hans Asperger’s pre-Kanner writings. My profound gratitude goes to all those parents who, together with Lorna Wing, were involved in setting up the National Autistic Society ix Acknowledgments (NAS) and the Sybil Elgar School in London and who shared their reminiscences with me.

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