Wednesday, October 22, 2008

Lost and Found

Professor Simon Baron-Cohen and his colleagues have written about today’s “lost generation” of adults who are currently being diagnosed, long after their childhood has ended, with various forms of autism (usually Asperger Syndrome):

But what of the generation who were born before 1980, who may have had Asperger Syndrome but for whom there was no diagnosis available? No specialist clinical teams, not even the concept of Asperger Syndrome. How did they fare? The answer is that they were overlooked, and struggled through their school years. And the reason we run a clinic for the very late diagnosis of Asperger Syndrome is because these are the lost generation: those who today would receive their diagnosis by 6 or 8 years old, if they were a 21st century child. They come to our clinic in young adulthood or even middle age, and they tell us a now-familiar story.

All through their school years they had trouble making friends or fitting in. Many were bullied by the other children, both physically and verbally. Many felt, in Claire Sainsbury’s chilling words, like “an alien in the playground”. (This is the title of her excellent book). The lucky ones managed to stay in school long enough to get their SATs, and some got to university. But not without feeling their teens were an uphill struggle. By young adulthood many had suffered clinical depression and even felt suicidal. All because their underlying condition of Asperger Syndrome had gone unrecognized and therefore unsupported. Some of them had enjoyed the closeness of an intimate relationship only for this to break down. Some had found employment only for them to run into problems in the work place through not understanding what the employer and other staff might expect of them, or through getting into conflict, or being passed over for promotion because of their lack of team skills.

But only a moment’s reflection reveals something grossly amiss in Baron-Cohen’s description. The above paragraphs imply there has been only one lost generation of autistic adults—the generation born before 1980—but how can that possibly be? What about the previous generation, say the ones who were born in the 1940s and 1950s? Or those born in the early 1900s? Or what about those born in the 1800s, and even much earlier than that? Does Baron-Cohen mean to suggest autism descended en masse upon humanity sometime in the late twentieth century, and are we meant to understand there were no autistic adults living among us until a few began showing up outside the door of his clinic, desperate for relief (so he says) from the wretched circumstances he and his colleagues would have thrust upon them?

This generation of autistic adults Baron-Cohen is attempting to describe is only the latest in an impressively long line of autistic generations, reaching far back into humanity’s ancient past. That autism has gone unrecognized for so long suggests exactly the opposite of what Baron-Cohen is trying to say—it suggests there has been nothing lost, or even wretched, about any of these prior generations. Far from being lost, the current generation of autistic adults is indeed the first to be found, found living quietly and productively among us, as autistic generations always have. But if Baron-Cohen and his colleagues must insist on hunting for those who are supposedly gone astray, might I suggest they expand their search beyond their clinic door. For out in nearly every street can be found a generation of autistic adults much larger than even Baron-Cohen has managed to conceive, a generation doing so well it would never think to bother with his self-deluded clinic.

As I have written elsewhere, autism has had a significant presence within the human population for a very long time—a presence mostly silent, but not without consequence.

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