A History of Autism

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

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.

"'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

"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