Neurodiversity

See Seven States!

There’s an implicit perspective behind most of what I write here at Shift, and I think behind much of what others contribute, a perspective that’s not exactly a secret, but one that I don’t think has been made plain enough yet.  I was put on the spot a couple months ago, not uncomfortably so, but in a way that forced me to think on my feet and sum up in one sentence what that perspective is.  What came out of my mouth was maybe the first time I’d given direct voice to something I’d somehow been unable to get across for a solid decade, even though as I say, it informs most of my contribution to this site.

That solid decade is one I outlined in a post here.  It came to an end last summer, when I struck up a correspondence with Shift Journal’s founding editor Andrew Lehman.  In receipt of an email from me which contained the seeds of half a dozen or more observations that eventually made their way into entries on this site, he wanted to know why I hadn’t been writing elsewhere.  The answer, related to the fact that I had regularly been met with incomprehension and/or hostility when trying to express my perspective among friends, acquaintances, and most of my family, was that I honestly had felt like I’d had only one thing to say—and that I obviously hadn’t been doing a very good job of it.

Maybe because of this, once I did start contributing posts, I’ve taken care to only dance around this central observation.  Close readers may insist that I’ve stated it plainly enough, but not so plainly, I think, as I did in conversation a couple months ago.

There’s an endocrinologist whom I see once a year or so for surveillance of a low-maintenance, low-drama, not terribly complex medical condition.  This being the case, there can be little enough to talk about when we meet, but I look forward to these appointments simply because I enjoy this doctor’s company and get the sense that she enjoys mine.  With my new news this year being that I was involved in a joint venture with a serious amateur evolutionary theorist whose work relied heavily on endocrinology, we spoke briefly about autism, about my step-daughter’s Asperger’s diagnosis, and the subject of the proposed changes to the DSM came up.  Having expressed my opinion that folding the Asperger’s diagnosis into that of autism in general was a good thing, I got the sense that the doctor tended to agree, but that autism not being part of her specialty, she wasn’t entirely familiar with the issues.  She wanted to know my reasoning.

The first part of my answer came straight out of my having been recognized as a fellow traveler by some of those who’ve been in favor of this change to the DSM for some time.  “Because there’s too much dividing-and-conquering going on between the two [diagnoses] …” I said.  Sensing that she “got” this and that it seemed to accord with her views as a person if not as a medical professional, I continued, “… and because there is no clear dividing line between autism and Asperger’s … just as there is no clear dividing line between autistic people and the rest of the population.”

Now, all I know for sure—and this I knew before I checked in for my appointment that day—is that my endocrinologist is a good listener.  But she nodded in agreement, looking me in the eye, as if I had confirmed her own suspicions.  We spoke a bit more about this site; I’m sure simply out of politeness she jotted down the url, and the appointment was over.

As for me though, even though I’d been posting here for half a year already, it felt like the first time I’d come right out and said it:  that there is no clear dividing line between autistics and the population they are born into.  Some of this clearly had to do with it being part of a face to face conversation, one which had occurred without the other party becoming uncomfortable for one reason or another.  As I’ve thought back though to the “one thing I had to say” yet was unable to adequately express for an entire decade, that was it.

Now saying it, even if it seems the cat has had your tongue for ten years while you thought it over, does not make it so.  And really, it had been said, in some or another off-the-shelf autism book my wife and I read years ago, that the autistic spectrum “shades out to normal.”  I’ve written in an earlier entry that this observation (which confirmed my own) seemed staggering to me then as it does now, and yet like my own initial efforts, it seems to have gotten swallowed up in a flood of less relevant fears and prejudices.  I’m not here today though to prove any points or make any cases—I’m here simply to offer, to re-offer a perception, and to confirm that perception in those who may have had it but thought they were the only ones.

It strikes me in fact that much of what’s been posted at Shift has to do not even so much with what autism is—this has largely been Andrew Lehman’s department—as with how it is to be perceived.  Not that this isn’t important work, and a sort of work that needs doing in any number of fields.  Long before I knew from autism, one of the sharpest analogies I’d ever run across regarding the absurdity of arbitrarily defined perceptions came from Wendell Berry’s book-length essay on modern agriculture The Unsettling of America, where he points out that:

We are invited to “see seven states from atop Lookout Mountain,” as if our political boundaries were drawn in red on the third morning of Creation.

Consider that diagnostic categories, maybe especially so where autism is concerned, are similarly arbitrary boundaries.  We are invited to see how many states from atop DSM Mountain, as if those diagnostic boundaries were drawn in red on the third morning of Creation?  When those boundaries are moved, added to, or done away with—again, perhaps particularly in the case of autism—what’s at stake has little to do with what is actually being divided, and everything to do with how certain stakeholders see fit to arrange our perceptions.

And yet and again—hear me clearly—there is no clear dividing line between autistic people and the rest of the population.

Mark Stairwalt on 05/14/10 in Autism, featured | 1 Comment | Read More