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The Autism Matrix: The Social Origins of the Autism Epidemic

Posted: Mon Nov 01, 2010 11:10 am
by brenhart
Hello,
My name is Brendan Hart and I am one of the authors of the book under review here. The other authors and I researched and wrote this book in the hopes of contributing in some small way to the lively conversations and debates taking place between parents, professionals, and researchers in places like the AutismWeb Forum. We would love to hear what you think about our work. Below, I've posted a short blurb about the book that we wrote.
Best wishes,
Brendan


The Autism Matrix: The Social Origins of the Autism Epidemic
by Gil Eyal, Brendan Hart, Emine Onculer, Neta Oren and Natasha Rossi
Published July, 2010, by Polity Press. http://www.politybooks.com/book.asp?ref=0745644007

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. Why? We all know the answer – or think we do: there is an autism epidemic. The number of children who are diagnosed with autism is estimated by the CDC to have gone from 1 in 2,500 in 1989 to 1 in 110 in 2009 (or from 4 to 90 in 10,000). And if it is an epidemic, then we know what must be done: lots of money must be thrown at it, detection centers must be established and explanations sought. A great deal of the debate centers around the potential causes of this "epidemic," such as environmental toxins, complex gene-environment interactions, vaccinations, or rising parental age and usage of assistive reproductive technologies. Regardless of the cause, the consensus is that the main goal should be to bring the number of new cases down by focusing on early diagnosis and prevention and investing in basic research so as to perhaps find a cure.

But can it really be so simple? This new book offers a very different interpretation. The authors argue that the recent rise in autism should be understood as an “aftershock” of the real earthquake, which was the deinstitutionalization of mental retardation in the mid-1970s. They show that where deinstitutionalization went the furthest, as in Scandinavia, the UK, and the “blue” states of the US, autism rates are also highest. Where it was absent or delayed, as in France or some of the “red” states, autism rates are low. The point is not only that many of the children who are diagnosed with autism today would, in the past, have been institutionalized as either retarded or mentally ill, but more importantly, that deinstitutionalization changed how we perceive and treat childhood disorders. “Retardation” is an obnoxious term because it implies a lack of potential (which is why Congress has just replaced it with a more neutral term – “intellectual disability”), while autism is coupled with an implicit promise that given the right intervention and support, any autistic child has the potential to progress beyond their present abilities. Doctors, psychiatrists, therapists and teachers are now much more ready to ascribe potential, however hidden or dormant, to disabled children and much more reluctant to predict global and irreversible delay. Back in an era when the recommended treatment was to institutionalize disabled children, it was perhaps natural to think of them as “retarded.” Today, when they are treated in the community and we seek to maximize their potential, autism seems a more appropriate diagnosis. “1 in 100” used to be the slogan of the National Association for Retarded Children in the 1960s. Now it is autism that is “1 in 100.”

The key to this transformation, this book argues, is that deinstitutionalization opened up a space for viewing and treating childhood disorders as neither mental illness nor mental retardation, neither curable nor incurable, but somewhere in between. The treatment and interpretation of autism may be likened to a “beachhead” into this in-between space, a beachhead carved primarily by the parents of children with autism in collaboration with therapists and experts who were, at the time, relatively marginal in their fields . Through detailed histories of the American National Society for Autistic Children (NSAC), and of the invention and spread of Applied Behavioral Analysis (ABA) and other therapies, the book shows how parents and therapists collaborated to forge an alternative network of expertise that challenged established psychiatry. Parents’ organizations played a major role in the rewriting of diagnostic criteria during the 1980s. They also served as the first public venue where autistic self-advocates like Temple Grandin could appear and speak directly to parents, experts and other individuals with autism. Ultimately, by utilizing the opportunities opened up by deinstitutionalization, the alternative network of expertise created by parents initiated a dynamic that culminated, as documented in this book, in a wave of diagnostic substitution from mental retardation to autism.

Combining a historical narrative with international comparison, The Autism Matrix offers a fresh and powerful analysis of a condition that affects many parents and children today. The book also makes a strong case for certain ethical and policy implications that follow from this analysis. The first can be phrased simply: does it still make sense to distinguish between autism and intellectual disability? Geneticists have shown that the boundary between autism and intellectual disability is fuzzy, and sociologists have shown that whether a child will be diagnosed with either autism or intellectual disability is influenced by social factors, such as the family’s socio-economic resources or their proximity to other families with autistic children. Yet, children with autism, on average, receive more and better services than children with intellectual disability. This is contrary to the spirit of deinstitutionalization. Individuals should be supported on the basis of their needs without using relatively ambiguous diagnostic categories to make invidious distinctions among them.

The second implication has to do with the conventional wisdom that there exists a "critical window of opportunity" at early age during which the potential of children with autism to progress, perhaps even to be cured, is greater. Consequently, current policies are characterized by a profound imbalance in which funding is directed almost exclusively towards research, detection and early intervention for young children, with hardly any resources going towards services for older individuals. There is obviously some merit to the “window of opportunity” argument and to the notion that investment at a younger age would pay dividends later, but it can also function as a smokescreen behind which resources flow to relatively mild cases of suspected delay, while the truly difficult cases, precisely as they get harder to manage, receive less attention and resources. Parents of young adults with autism report a marked decrease in available services as their kids grow up. At the same time, the promised dividends do not necessarily materialize. From 2003 to 2008, the number of adults with autism applying for vocational rehabilitation services increased 337 percent nationwide.

Seen from this perspective, the authors argue that the proper response to the rising number of autism diagnoses is not prevention and eradication of an epidemic, but rather guaranteeing equity and continuity in access to services and therapies. This response would involve two aspects: first, as much as possible, a “non-categorical” approach to the provision of services and therapies, which would minimize the distinctions between autism and other conditions, especially intellectual disability. Second, a wider perspective on autism as a lifelong condition and the autistic person – not just the child – as a member of society. Hopefully, this book can inspire a much needed debate on the ethical and practical aspects of dealing with the ever-increasing number of persons, children and adults, afflicted with autism and related disabilities.

Re: The Autism Matrix: The Social Origins of the Autism Epidemic

Posted: Sat May 28, 2011 2:24 am
by danfitz
Hi Brendan,

to date I have purchased over 25 copies of The Autism Matrix, to give to colleagues. Your summary pretty much explains why. I think its a must read for anyone who lives in the "ASD World" because it offers a different perpective on that world and questions the origins of beliefs held there-in. Working with preschoolers my own feeling is that labeling should be left to supermarkets, as an OT I feel people should be given resources based on need not diagnosis. And those resources should be evidenced based.

Here in Ireland our government decided to provide classroom assistants instead of reducing class sizes. For me this was a mistake as it has create a demand for "a piece of paper" i.e. a letter from a professional with a diagnosis. To get resources professionals have been pushed (some go willingly) further and further away from best practice.

Congrat's on the work


Dan

Re: The Autism Matrix: The Social Origins of the Autism Epidemic

Posted: Wed Sep 14, 2011 2:45 pm
by Kenny V
Just read the description and exert.. This book makes no sense.
Did anyone else read it or have any comments??? or only the buddy that endorsees his work..

Re: The Autism Matrix: The Social Origins of the Autism Epidemic

Posted: Wed Sep 14, 2011 6:35 pm
by Matthews Puzzle
I read it, but really I think it is just a slap in the face to us that know better. Not worth our effort to "discuss" this with the authors. We know what is happening to our children. We know they are medically I'll and that with proper treatment they can improve, some, many, can recover. Maybe they just wanted to start a fight, get us all worked up. But I have a child to recover. That takes more of my energy, I cant waste it on this book.