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On Autism: Who Are They Fooling?

11/04/2012 12:38 BST | Updated 10/06/2012 10:12 BST

I attended Autism, Ethics and the Good Life on World Autism Day. It was the day after April Fools Day. On hearing some of the stranger arguments put forward by speakers I was tempted to check my diary.

Dr Tim Cadman, at Institute of Psychiatry, King's College London, explained to the uninitiated that while some understand autism as a disorder, others - particularly proponents of the social model and members of the 'autistic community' - understand it less as a condition to be treated than as a 'distinct cognitive style'. One rather articulate speaker, K Leneh Buckle, who was severely disabled, mute and incommunicative as a child, thought she had since 'lost something very special'. Professor Stuart Murray at the Centre for Medical Humanities at University of Leeds spoke disparagingly of the 'narrative of diagnosis' around autism.

This peculiar lauding of autism as a good thing, and the concomitant problematising of those who see it as a condition to be treated, was a recurrent theme. This is foolish. Not least because a diagnosis in any meaningful sense is a long way off. We heard how people are 'diagnosed' as a means to an end, as a way of accessing the support they need. Professor Francesca Happe, a colleague of Cadman's, explained that it is only when a person's 'autistic-like traits are causing them significant difficulties' that a diagnosis results. But this imprecision (autistic-like?) - not to mention the understandable opportunism of desperate parents - far from being worried over was instead celebrated by speakers and delegates alike.

Happe was surely right to note that the various behaviours 'on the spectrum' are as alike as apples and oranges. It might be better to talk of autisms rather than autism, she said. But I don't see how this would get us any further if we don't have a singularly reliable definition to begin with. From the severely autistic child, unable to speak or make eye contact, prone to hand-flapping and unable to make themselves understood; to the highly gifted if 'odd' and socially awkward individual with a neglected talent - there is much to differentiate those declared autistic, but little it seems to justify their belonging to a spectrum.

What was remarkable, though, was that despite an apparent consensus that talk of a spectrum is wrong-headed, this was not on account of it being too broad. Apparently it isn't broad enough. Rather than arguing that there needs to be greater clarity about the condition, the better to ground medical interventions and treat it, there was if anything a desire for a further blurring of what autism is. We are all autistic in one way or another. The logic is perverse but in the absence of a medical explanation of what causes it (whatever 'it' is); autism is pretty much whatever you want it to be. For good and for bad.

Happe described a 'triad of impairments' typically associated with autism - social impairments, communication impairments and rigid or repetitive behaviour. The last of which seems to cause the most difficulty when it comes to defining autism. In what way are the 'obsessional' pursuits of those with a keen interest in maths or astronomy distinguishable from people with a definable condition in need of treatment? People living such intense or rarefied existences can be rather unusual shall we say. Does that make them autistic? I can't have been the only person in the room self-diagnosing.

I'm bookish, a bit of a loner, have what Happe described as an 'eye for detail', and routinely offend against the emotionally correct dictates of our let it all hang out culture. Maybe I too am 'on the spectrum'?! Or maybe what was once regarded as quite normal is today stigmatised, the sorts of traits once understood as part of the diversity of human flourishing, as characteristics to be admired, are now seen as undesirable, a problem or beyond all but the weirdest of individuals who, for whatever reason, stand apart from the rest of us? While not wanting anything to do with the autism as identity crowd, perhaps we do have a problem when it comes to the narrowing of what it means to be human.

So while Murray's relentless relativising of autism grated, I was rather taken with his critique of the reductionist and deterministic narratives associated with the condition. Not least the use of brain imaging to suggest autism can be found in particular regions of the cerebral cortex; or bad reportage describing 'lone wolves' bent on terrorist acts as autistic. He could have gone further though. While Murray was right to make the comparison with long-since discredited 19th Century phrenology, 'brain science' - it's 21st Century and no less spurious equivalent - is all the rage right now. Just read the 'research' conducted by the Iain Duncan Smith-founded Centre for Social Justice or Matthew Taylor's Royal Society of Arts.

The truth is that both the discrediting of pseudoscience and the humanising of autism, require a hard-headed approach to what we objectively know and a fuller account of what human beings are made of. In this regard, Sandy Starr of the Progress Educational Trust was surely right. He told us that having something wrong with your health isn't the same as having something wrong with you as a person.

The difficulty with autism, he said, is its 'profound effect on people's sociality'. It impinges on one's sense of self so fundamentally that it is inseparable from it. That doesn't make it desirable or in any way constitutive of a person's identity as the likes of Buckle claim. An autistic man in the audience declared himself pleased to be free of the everyday anxieties most people experience. 'I hardly feel anything' he said. Rather sadly, I thought. Even if he didn't know it himself he is missing out on something that his condition denies him. I for one would rather be anxious.