LegitimacyThere was a cascade of insights and epiphanies that was set off for me from coming to the knowledge, at the age of 36, that both myself and a 7-year-old girl who later became my stepdaughter occupied places on the autistic spectrum. Most were of the Ah, it all makes much better sense now, or I was blind, but now I see variety.  Only one brought with it any sense of drama or suspense as to how things would unfold over the coming years. That drama is still unfolding, and will likely continue past my being here to watch and play a part—and it may in time turn out to be one of those paradoxes that disappear into a resolution which seems obvious in hindsight. For now though, it has my full attention.

As a paradox, it presents itself as a two-way flow of legitimacy, specifically the legitimacy which is attributed to or subtracted from a person—their very legitimacy as a human being—flowing away from or toward them when they are identified or perceived as being on the autistic spectrum. The starkest, most powerful presentation of this issue that I’m aware of continues to be this brief essay from one Amanda Baggs, which to date has had 839,133 views on YouTube (stick with it for the explanation that comes some ways into the video).

Ms. Baggs, while devastatingly articulate via text, is unambiguously autistic; there is no “passing for white,” no easy, everyday verbal conversation for her—and because of this she is confronted every day with the reality that many do not view her as a “real,” legitimate person.  The situation was not so clear cut for me and my future stepdaughter, as most people do not assume either of us to be on any sort of spectrum.  Her initial diagnosis was a not-very-useful “borderline autistic” (she’s since been confirmed with Aspergers); mine was, had I chosen to keep it that way, entirely between her mother and me.  It was apparent though that my behavior and character fit remarkably well against the same background against which we were learning to understand her daughter’s behavior and character.  As is the case with many who come to their diagnosis—clinical or otherwise—as adults, suddenly my whole life made sense to me for the very first time.

For me personally, at least before going public with the news, this felt like reinforcements arriving, the cavalry charging over the hill during a battle which had gone on much too long.  I had felt all my life, when it came to social life, that I was spending half my energy simply trying to convince other people that—in terms of social needs, skills, and priorities—I really was the way I presented myself to be.  And now, it turned out there were others like me, and no one could act any longer like I was the only one, and they’d accept that this is the way I am, the way we are, and things would finally now be better, much better, right?


I’ll leave off the personal narrative for now but if you would, stay right there, gazing down over the edge of that cliff, please, and listen.  Here’s what I could see, clearer and clearer as I fell:

There was, on the one hand, autism as seen by Dr. Hans Asperger himself, as described in Uta Frith’s Autism: Explaining the Enigma:

The term “autistic intelligence” was coined by Asperger. He believed that autistic intelligence had distinct qualities and was the opposite of conventional learning and worldly wise cunning. Indeed he thought of it as a vital ingredient in all great creations in art and science.

Frith finishes that paragraph by noting, “A vivid biography of the great mathematician Erdös suggests that he had many eccentricities that are reminiscent of autism.  Yet in his case the possibility of autism had never been considered.”  This line of thinking led me to Norm Ledgin’s Diagnosing Jefferson, which considered the case that one of my country’s founding fathers was most likely every bit as autistic as my girlfriend’s daughter.  Michael Fitzgerald’s extensive work in this area came along later, but it wasn’t hard to anticipate the upshot, which was that Hans Asperger had been right about autistic intelligence.

Not that every autistic person has great contributions to make to art and science; to linger on that bit of obviousness is to miss the point.  When society’s expectations for any given autistic person are as close to zero as they are, clearly something is out of balance.  Then as now, it seems to me the plain fact which no one dare speak is that the autistic population has made contributions to society far out of proportion to our numbers—proportionally greater contributions than those made by those who have lacked “autistic intelligence.”  Then as now, the lyrics of Janis Ian’s song come easily to mind, that vision of “small-town eyes that gape at you in dull surprise, when payment due exceeds accounts received.”

So there was that:  the contributions out of proportion to both numbers and expectations, for which credit has never been given, and rightful legitimacy—for the autistic cognitive style in general—never acknowledged.  In market terms, this was autism as an undervalued asset, a find, a “buy opportunity.”

On the other hand, not so pleasant to remember or contemplate, there has been autism as seen by friends and family.

Suffice it to say that to voluntarily identify as autistic is to invite, in my experience, a wide range of self-serving, willfully obtuse, intellectually dishonest, variously unhelpful emotions and behaviors from those around you.  It is to break an unspoken but powerful taboo.  It is to invite a drain on one’s legitimacy as a human being.  Quiet bafflement may be the best response that one can hope for.  To accept an actual diagnosis of autism, and to share it with others is little different.  “Maybe she’s just shy,” was the wisdom imparted to me by one well-meaning extended family member, the seeming implication being that in a situation where legitimacy was at stake, a lie was preferable to the truth of a diagnosis for my stepdaughter-to-be.  And for some, certainly over the short term, such lies are very much preferable; their examples abound.

Not to be too hard on my own circle; given the stigma and lack of accurate information surrounding autism, their reactions are likely not so far from what anyone else in my situation might encounter.  Which is exactly why—rather than being merely my own personal complaint—it’s a problem.

Viewed from above then, as seen during my plummet from the cliff, these two opposite-running currents come together in a river which disappears into—and emerges from—the base of that cliff.  Me, I plunged into this river long ago, directly into the eddies and whirlpools that form down its center.  Along the left bank, the current flows out of the cliff’s base like a spring.  Along the right bank, another current flows into the underground darkness. Here in the middle, there’s just a lot of going round and round, and the expectation that sooner or later, one current—one perspective on what it means to be autistic—is going to overwhelm the other.

on 10/23/09 in Autism, featured | No Comments | Read More

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