- BuyUnderstanding Autism: Parents, Doctors and the History of a Disorder by Chloe Silverman
Princeton, 360 pp, £24.95, November 2011, ISBN 978 0 691 15046 8
- BuyWhat Is Madness? by Darian Leader
Hamish Hamilton, 359 pp, £20.00, October 2011, ISBN 978 0 241 14488 6
Descriptions of mental illness depend on what a society regards as a desirable form of exchange. Behaviour is seen as a symptom (or a crime) rather than a foible or a talent when things deemed to be essential – sex, words, money – are being exchanged in a particularly disturbing way, or not being exchanged at all. Sex with children is unequivocally wrong, and possibly an illness, while exchanging sex for money is merely controversial. In the relatively recent past there was something wrong with men exchanging semen with each other, but nothing wrong with men and women exchanging words with God. Now, for some of the authorities, exchanging words with people who are not there, or using words in a way that makes exchange extremely difficult, or not using words at all, as in psychosis, is an illness or at least a problem. Because these are simply agreements between people and not divine fiats or laws of nature – because diagnoses are now understood to be more or less authoritative forms of consensus – our beliefs about these things are up for grabs in a way that they haven’t been before.
For Chloe Silverman, ‘understanding autism’ means understanding how autism has become a diagnostic category and why for some people, in autism advocacy groups for example, it isn’t a pathology at all but just a different way of seeing the world. For Darian Leader, the diagnosis and treatment of madness is something we need to get right, and getting it right means using his preferred version of psychoanalysis. Silverman is interested in how agreement is reached about autism, what it is, and what therapy autistic people need, and who is allowed to contribute to the conversation about these things. What she calls the ‘relentless medicalisation’ of autism has excluded parents and caregivers from adding to the stock of available knowledge. ‘Sociologists of medicine and science,’ she writes, ‘have underscored the importance of social position in the construction of credible witnessing. They have documented how hard it can be to establish lay expert claims to knowledge,’ particularly the claims of the lay experts who are the sufferers themselves (not to mention the claims of all the unqualified people who look after them). Any therapeutic approach that, as Leader puts it, ‘bulldozes away the culture and history of the person it purports to help’ can only be a pernicious oversimplification. Every approach excludes someone from the conversation. Experts on mental health, both the scientists and the non-scientists, have been unduly militant because they all know that they are on shaky ground.
Silverman’s story is about the invention of a diagnostic category, and how it evolves or dissolves, and what makes certain forms of treatment seem preferable to others. Autism is particularly interesting in this regard because – so far at least – it is considered incurable. Which doesn’t mean that the autistic can’t develop or change but that there seem to be significant limits to improvement (in the eyes of the advocacy groups even to use these words is to miss the point). The commonsense view is that we prefer to think about treatments that work, but the idea of what it is for something to work is itself a problem. As Leader points out, psychotic delusions can ‘work’ in the sense that they are ways of constructing a more intelligible or a more pleasurable life, an attempted repair of a shattered world, but there are ways in which they don’t work too. None of the treatments for autism work – and they include now a large spectrum from the dietary to the psychological and the behavioural – in the sense of transforming the autistic child into a ‘normal’ child, or of taking the autism out of the child, or in most of the other senses we have of what a cure might be like or what a treatment should do. As Silverman shows in considerable and illuminating detail, ‘the history of autism has been resolutely experimental’ and the descriptions of the condition and its causes largely speculative. Because ‘autism has been treated alternately as a psychological, neurological, behavioural or genetic disorder, often paralleling trends in medical research and popular interest,’ it has often been more of a barometer of current trends in medical research than a testimony to the efficacy of this research. The advantage of these multiple perspectives is that there are now good descriptions available of the combination of forms of behaviour that make up the diagnosis of autism.
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