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The Autism Matrix: The Social Origins of the Autism Epidemic
Today autism has become highly visible. Once you begin to look for it, you realize it is everywhere. Why? We all know the answer or think we there is an autism epidemic. And if it is an epidemic, then we know what must be lots of money must be thrown at it, detection centers must be established and explanations sought, so that the number of new cases can be brought down and the epidemic brought under control. But can it really be so simple? This major new book offers a very different interpretation. The authors argue that the recent rise in autism should be understood an “aftershock” of the real earthquake, which was the deinstitutionalization of mental retardation in the mid-1970s. This entailed a radical transformation not only of the institutional matrix for dealing with developmental disorders of childhood, but also of the cultural lens through which we view them. It 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 authors show that where deinstitutionalization went the furthest, as in Scandinavia, UK and the “blue” states of the US, autism rates are also highest. Where it was absent or delayed, as in France, autism rates are low. 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.
321 pages, Kindle Edition
First published June 21, 2010
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August 22, 2020
Why has autism increased so dramatically in recent decades? One reason is that today’s autism is not the autism of 50 years ago. In the current DSM (the American Psychiatric Association’s Diagnostic & Statistical Manual Diagnostic of Mental Disorders), the first two requirements for a diagnosis of autism spectrum disorder are i) deficits in social communication & interaction, and ii) restricted & repetitive patterns of behaviour, interests or activities. By contrast, before 1980, autism was classified as a type of childhood schizophrenia and considered a psychosis: much narrower than the current definition.
Another reason is that if a certain diagnosis gives better options for therapy and educational, then doctors will make that diagnosis more often. The book quotes Judith Rapoport, head of child psychiatry at the US National Institute of Mental Health as saying “I’ll call a kid a zebra if it will get him the educational services he needs”.
But these are only proximal explanations: why _did_ the definition of autism change the way it did, and why _were_ better options made available for those with that diagnosis? This is the strength of the book. Although the title may seem flippant, in fact it is a detailed and historically aware account of the dynamic between stakeholders such as parent groups, self-advocates, service providers, individual researchers, professional groups and politicians.
For example, in the 1950s, institutionalized children were classified not by intelligence but by social capability. It made no difference to anything if some of the “feebleminded” children were more intelligent than others. As deinstitutionalization got underway, caring was done by families, who argued for new classifications and therapies which would benefit their children. The authors argue that it’s no coincidence that less autism is found in France where “deinstitutionalization never happened”. This is just one step in the book’s characterization of the process, which is convincing and draws on multidisciplinary evidence from several decades.
Another reason is that if a certain diagnosis gives better options for therapy and educational, then doctors will make that diagnosis more often. The book quotes Judith Rapoport, head of child psychiatry at the US National Institute of Mental Health as saying “I’ll call a kid a zebra if it will get him the educational services he needs”.
But these are only proximal explanations: why _did_ the definition of autism change the way it did, and why _were_ better options made available for those with that diagnosis? This is the strength of the book. Although the title may seem flippant, in fact it is a detailed and historically aware account of the dynamic between stakeholders such as parent groups, self-advocates, service providers, individual researchers, professional groups and politicians.
For example, in the 1950s, institutionalized children were classified not by intelligence but by social capability. It made no difference to anything if some of the “feebleminded” children were more intelligent than others. As deinstitutionalization got underway, caring was done by families, who argued for new classifications and therapies which would benefit their children. The authors argue that it’s no coincidence that less autism is found in France where “deinstitutionalization never happened”. This is just one step in the book’s characterization of the process, which is convincing and draws on multidisciplinary evidence from several decades.
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