The Autism Matrix (英語) ハードカバー – 2010/7/26
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Times Higher Education
"Gil Eyal and colleagues, five sociologists from Columbia University, have brought a fresh perspective from a different discipline to try to explain autism's expansion in prevalence and popularity...Overall I found much to admire in this detailed study."
British Medical Journal
"This is a very useful book for those interested in autism and the role of parent movements and activists, and more generally in the social factors affecting changes in the classification of diseases."
Sociology of Health and Illness
"The development of the autistic spectrum is laid bare as a cultural construct still in evolutionary process, and the elucidation of this morphing phenomenon is the crowning achievement of this book."
The Kelvingrove Review
"Autism, rare and little publicized twenty years ago, is now constantly in the news and is absorbing ever larger sums of public funding and concern. It has changed school classrooms and perhaps the very nature of childhood. This book is the best available sociological analysis of how this happened, linking recent events to those early in the twentieth century. It tells of the formidable labour of autism activists, their dreams and schisms, with generosity and insight. Institutions, the ideals of the family and its management, and child minding, all play their role. This is a reflective analysis of a pervasive event of our times, replacing clichés by new ideas."
Ian Hacking, Collège de France
"The Autism Matrix is an exemplary exercise in historically informed medical anthropology and sociology. This richly argued, engaging, and well-researched book begins with the basic question of why autism diagnoses have increased in recent years and then offers a wealth of cascading implications. The authors succeed in showing that the simplistic question of 'epidemic or not?' is unproductive in comparison to the more intellectually fruitful question of how institutional matrices identify, name, count, and treat neuropsychiatric difference."
Roy Richard Grinker, Ph.D. Professor of Anthropology, The George Washington University,and author of Unstrange Minds: Remapping the World of Autism
Brendan Hart is Doctoral Candidate at the Department of Sociomedical sciences at Columbia University
Emine Oncular is Doctoral Candidate at the Department of Sociology at Columbia University
Neta Oren is Visiting Scholar at the Institute for Conflict Analysis and Resolution, George Mason University
Natasha Rossi is Doctoral Candidate at the Department of Sociology at Columbia University
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I experienced a deep personal connection with the book's events, having grown up in New York- well attuned to reports of abuse and neglect at the Willowbrook State School. As a 1976 college graduate with a degree in English I landed a job at a small private school for "exceptional students" in the Catskill Mountain region and was shocked to meet warehoused adults with cognitive deficits ranging from severe to so mild- that they could be confused with the staff. They probably had a myriad of diagnoses including mental retardation, autism or schizophrenia, but diagnosis seemed irrelevant since all that mattered was that they were kept alive and out of sight to avoid inconveniencing society. When I next worked as a live in "houseparent" teaching daily living skills to nine men who previously lived at the Willowbrook institution, I recognized that these were relatively high functioning men who responded well to environmental stimulation and behavior modification. The term "developmental disability" was just starting to be considered more politically correct than the term "mental retardation" which had replaced the even less acceptable terms "imbecile", "moron" and "feeble-minded". By the late 1970's I had learned a lot about developmental disabilities but all I knew about autism was what I read in Bruno Bettelheim's book "The Empty Fortress" which claimed that autism could be cured by an understanding staff who exercised extraordinary listening skills and patience.
The authors of The Autism Matrix explain how the tectonic social shifts in the 60's and 70's enabled and encouraged parents to keep their young disabled children at home. Services started to be offered in early intervention programs and public schools. The diagnosis of "autism" became increasingly prevalent -at least partially because it offered less stigma than the "mental retardation" label and offered hope of cure . One interesting aside is that as therapies positively impacted autistic symptoms such as head banging or hand biting- symptoms previously considered intrinsic to the syndrome abated and the definition of autism changed.
Readers will learn all about the major players as causation and treatment theories evolved-Bruno Bettelheim (promoted out of home placement with milieu therapy), Leo Kanner (who thought autism extremely rare and the fault of cold parenting), Bernard Rimland (who believed that autistic children inherited unusually high intelligence from their gifted parents), Eric Schopler (encouraged parents to be collaborators in their children's education), Stanley Greenspan's `Floor time" and occupational therapist A. Jean Ayres sensory integration therapy that attempts to improve sensory-motor skills and learning by altering the nervous system. Sensory integration therapy like several other interventions is not designed to specifically cure autism but to help improve the functional skills of children with many different types of disabilities, including learning disabilities. The variety of treatments and who they helped created what we now call "the autism spectrum" and regardless of the person's skill level an arsenal of therapies and alternative medicine options (i.e. special diets, vitamin supplements, removal of toxins, magnets) have emerged to treat the many social/communication and sensory motor deficits associated with Autistic Spectrum Disorders (ASD).
I highly recommend reading The Autism Matrix if you are in any way connected to the autism community. As an occupational therapist, author, presenter and parent of a young man with Asperger's syndrome I am obsessed with learning new truths. If you share this sensibility- this book will not disappoint.
Barbara Smith, M.S., OTR/L,author of The Recycling Occupational Therapist.