The Autism Matrix

November 4, 2010

This is a key contribution to a growing body of literature examining the history and cultural meaning of autism. Using a wide variety of data sources, the authors outline a sociology of autism that illuminates critical junctures in its construction as a disability.

From the often spiky infighting between autism researchers to the dethroning of psychiatry by parent-backed alternatives, The Autism Matrix fills in crucial gaps, and will greatly improve how the context of diagnosis and treatment is understood.

The authors' basic thesis is controversial: that autism has emerged as a "common" condition due largely to changing social attitudes to intellectual disabilities. To their credit, they marshal significant supporting evidence. In particular, they look at how Wolf Wolfensberger's normalisation paradigm revolutionised ideas about the place of people with intellectual disabilities in the community, and explain how these efforts accompanied the process of deinstitutionalisation. They also examine diagnostic statistics across multiple countries, considering how various factors may have produced a recent autism "epidemic".

Fleeting reference is made to changing social conditions that have transformed what is perceived as intellectual disability or aberrant behaviour, but these are not taken much further - and in the case of autism, they need to be, as the ever more constricted view of what it is to be a "normal" human being in late capitalism has made a powerful contribution to rising diagnostic rates, particularly at the outer edges of the spectrum.

The text also lacks engagement with troubling trends in current autism research and treatment. While professionals can design creative, personalised programmes for education, care and daily life, these efforts are almost universally underfunded and under-researched, and provision is haphazard.

At the same time, millions are spent on research that explicitly seeks to prevent or cure autism - chimeras that may instead lead to the wholesale elimination of people with autism via prenatal testing, as has been the case with Down's syndrome.

The attitudes that underlie this disparity in funding are a key part of the sociology of disability in general, and of autism specifically, and often have their roots in economics. Far from valorising autistic existence or supporting normalisation in the Wolfensbergerian sense, these efforts raise actual normalcy to an iconic status.

Several chapters attend to the economic side of diagnostic change and substitution. Deinstitutionalisation, for example, is accurately presented as not just a response to horrific scandals involving the mistreatment of intellectually disabled and mentally ill inmates, but also a key example of the shrinking role of the state in providing direct services to vulnerable citizens. Institutional care was, and is, hugely expensive.

However, big publicly funded or charitable institutions have often merely been replaced by smaller privately run institutions. And by incarceration or homelessness - especially in the US, where deinstitutionalisation was rapid and badly funded.

Where at one time the state encouraged removal of "deviant" or "subnormal" people from their communities and provided care, however poor, today families are often expected to pay for services, or even to provide them.

More attention could have been paid here to the phenomenon of the family home as a new form of institution, including the way that the commercialisation of autism therapies, drugs and "alternative" treatments has recast parents as consumers and commissioners.

Despite these oversights, the original research represented here is wide-ranging and invaluable. It will be of interest not only to those already familiar with autism as professionals or through personal experience, but also to readers who wish to understand how medical diagnoses and treatment paradigms can be produced by social factors.

The Autism Matrix

By Gil Eyal, Brendan Hart, Emine Onculer, Neta Oren and Natasha Rossi. Polity Press. 240pp, £55.00 and £17.99. ISBN 9780745643991 and 44004. Published 11 June 2010

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