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A History of Autism: Conversations with the Pioneers

ISBN: 978-1-4051-8653-7
398 pages
July 2010, Wiley-Blackwell
A History of Autism: Conversations with the Pioneers (1405186534) cover image


This unique book is the first to fully explore the history of autism - from the first descriptions of autistic-type behaviour to the present day.
  • Features in-depth discussions with leading professionals and pioneers to provide an unprecedented insight into the historical changes in the perception of autism and approaches to it
  • Presents carefully chosen case studies and the latest findings in the field
  • Includes evidence from many previously unpublished documents and illustrations
  • Interviews with parents of autistic children acknowledge the important contribution they have made to a more profound understanding of this enigmatic condition
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Table of 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

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Author Information

Adam Feinstein is the editor of two autism-related websites, AutismConnect (www.autismconnect.org.uk) and Awares (www.awares.org), both run by Autism Cymru, Wales’s national charity for autism. He also runs the acclaimed annual Awares international online autism conference. He writes extensively on autism for a range of publications, including The Guardian, broadcasts for the BBC, and gives talks at conferences around the world. He is the founder and editor of Looking Up, the monthly international autism newsletter (www.lookingupautism.org), and has contributed to the UK Medical Research Council’s Autism Review. His much praised biography of the Chilean poet, Pablo Neruda: A Passion for Life, was published in 2004. He has a son with autism.
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"Another fascinating book on autism. I highly recommend it to anyone interested in the subject: those that have a person with autism in their family, professionals and academics, and anyone in general. . . In my opinion, Feinstein has made a significant effort to be impartial, something that I am sure it has not been easy." (Iautism, 2011)

"Recommended. Graduate students, researchers, professionals." (Choice , 1 April 2011)

"Feinstein offers one of the first truly comprehensive overviews of the history of autism research...culminating with a discussion of the projected future of autism research. He interviewed dozens of researchers and prominent autistic people in several countries, in addition to consulting numerous primary sources to compile this authoritative text. Feinstein traces the condition from before it was known as autism through the present day, and in so doing, methodically dissects both the parental blame hysteria that gripped the 1980s and the explosion of autism awareness and controversy in the twenty-first century." (Asperger's Association of New England Journal, Fall/Winter 2010)"This is a much needed book on the history of autism. What sets this book apart from the others is the description of the hypotheses about the disorder back when Dr. Kanner and Dr. Asperger were first writing about their unique discoveries. It provides readers with a much needed understanding of the disorder from the past as well as the present." (Doody's, September 2010)

"This book is more than a collection of facts; it's also a detailed account of often-fierce controversy and professional rivalry....... Feinstein's book is a fascinating and indispensable record of the journey so far." (Special Children, 2010)


"In his History of Autism, Adam Feinstein has documented in an entertaining and yet exacting way, the evolving history of how our present-day ideas about autism reflect the personalities and interests of key individuals, who played critical roles in our understanding of this perplexing symptom complex. He has been to interview them, all over the world, and draws some fascinating responses to his questions. It is particularly pleasing that he managed to gather the material for his review before the most elderly among the pioneers passed away, as several have done within the past 2 or 3 years." (Brain: A Journal of Neurology, 2011)



"No one has attempted to write the history of autism so comprehensively 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 become 'emeritus'. History-telling is never wholly objective, but Feinstein (the science-writer, parent, and international conference 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."
Professor 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, carefully documented and eminently readable account of the history of autism than this book."
Darold A. Treffert, Clinical Professor of Psychiatry, University of Wisconsin Medical School, USA

"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, Dip Ed, BA Hons, 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, Irving B. Harris Professor and Director, Child Study Center Yale University, USA

"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 associates, 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 questions 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, Professor, University of North Carolina School of Medicine, USA

"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 literature. 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, Professor of Psychiatry, John P. Hussman Institute of Human Genomics, USA

"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

"This is a remarkable, beautifully written work, which is destined to become a classic for the field. Feinstein takes a highly original approach to charting progress in our understanding of this enigmatic developmental disorder through interviews with researchers and community pioneers from around the world. This unique book is a must-read for scholars, students, parents and professionals; it provides a balanced and historical perspective on what we know and what we don't yet know about autism.
It leaves the reader with a strong sense of accomplishment about how far we have come through the partnership of families and researchers. I came away with genuine optimism that our ability to transform the lives of millions of children and adults with autism from around the world will be achieved in the near future, with the help of visionaries like Adam Feinstein!"
Helen Tager-Flusberg, Boston University, US

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