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Sunday, November 13, 2011

Autism, Passion, and Politics

Why is the field of autism so political and contentious? A few months ago, David H. Skuse wrote in a review essay in Brain:
A couple of years ago, I was asked about autism by a journalist from the New York Times. The reporter had been travelling the world, discussing the subject with many people who had contributed to our understanding of this fascinating and complex disorder. Why, she asked, was it that this subject aroused such passions? Never before had she come across a group of scientists who criticized each other quite so much as those working in the field of autism. She was astonished, dismayed and perplexed in equal measures.
The origins of the term autism are therefore mired in controversy,with some claiming that Kanner plagiarized Asperger’s work. Certainly, he was better known in English-speaking countries for years before the latter’s papers were translated. The term ‘Asperger syndrome’ has since acquired a connotation that is far-removed from what Asperger himself described. It has become a sort of ‘autism for the middle classes’ and is about to be consigned to history. In the 5th revision of the American Psychiatric Association’s Diagnostic and Statistical Manual, the eponym will be abolished. Lorna Wing, who was responsible for introducing Asperger’s work to the English-speaking world (Wing, 1981), will not be sad to hear this. She has described its current usage as a ‘political diagnosis’ (personal communication).

Virtually all the key assumptions that were held by the earliest generation of autism researchers, of whom many were interviewed for this book, are now being questioned. No wonder there is tension in the autism community. First, there is no qualitatively distinct symptom complex associated with autism that is not found in other children who lack any serious neurodevelopmental impairment (Happé et al., 2006). Second, there is no strong association with generalized learning difficulties; the proportion of identified cases with autism and low IQ is falling steadily (Baron-Cohen et al., 2009). Third, there is no inevitable delay in the onset of language, and the criterion will be dropped from the revised diagnostic framework currently being considered (DSM-5 Neurodevelopmental Disorders Working Party, 2011). Finally, comorbidity appears to be the rule rather than the exception, and it has become inevitable that separate diagnostic recording of other disorders such as attention-deficit hyperactivity disorder is introduced, because it makes clinical sense.