Neurodiversity

Quiet Desperation and the Larger Picture

It’s an odd business, blogging for a constituency that’s not only unaware that you exist and are writing for and about them, but also unaware that they exist and are many enough to make up a constituency in the first place. And yet every once in a while things happen that validate the effort, making clear that there’s reason enough to keep at it.  Here I’m talking about the emphatic response received by Clay at Comet’s Corner over his essay reposted at Shift earlier this week.  He’d been prompted to write in turn by my having made reference a few days earlier to a book we had had a similar opinion of, Pretending to Be Normal.  The comments left seem to confirm that this experience of living behind a false persona in order to hide one’s autism is widespread, costly, and too-little attended to.

Given what I know of Clay’s audience, it’s safe to assume that those commenters all already knew they were autistic—and they know now if they didn’t before that there are others who suffer the same situation vis-à-vis a “mask.”  That’s a sort of awareness I’m glad to have a hand in building; we all deserve to have the perspective and the solace that comes of knowing that our experience is shared.  Here’s the thing though:  Clay spent most of a long and storied life without that perspective, coming to a diagnosis only a few years before retirement.  Me, I spent thirty-six years painfully aware of my mask while remaining unaware that my experience was at all consistent with autism—a situation that changed due only to blind luck.

This and other examples strongly suggest that there are many, many others out there like us and that most likely there always have been—people who for one, expend untold amounts of energy in return for which they receive the boon of getting to keep their noses above water, and for two, who have no earthly idea why it is that they’re working so hard at what seems so easy for others. These people, and not those who’ve already found their way to Clay’s blog, are the phantom constituency I refer to.

This week Clay is continuing to work this general theme as well, and he names Henry Thoreau as a spiritual brother; I concur, having long recognized Thoreau as “family.”  It’s worth pointing out it was he who claimed, “Most men lead lives of quiet desperation and go to the grave with the song still in them.”  My guess is that Thoreau’s only mistake there—an understandable one—was in assuming his own pre-Walden experience was representative of “most men.”  As applied to autistic people who “pass,” Thoreau’s observation was dead-on and a century and a half ahead of its time.

Last year there was a lively, extended discussion in the Wrong Planet forums sparked by someone who linked to a post of mine which questioned the wisdom of leaving it to others (i.e., the medical establishment and the DSM) to define who “is” and “is not” autistic.  The focus of the discussion was on whether or not those with official diagnoses should recognize as peers those who are self-diagnosed, or who identify as autistic without the validation of a professional opinion—actually this was part of a recurring discussion which tends to center on self-diagnosed autistics who have joined and contributed to the forum; I especially liked this comment:

To me, at my age, it’s almost risible to believe that anyone could self-delude like this and join this board and tie up bandwidth, and waste their time/everyone’s time and live in this castle on a cloud in the sky.

Castle on a cloud though it may be, the territory of the officially diagnosed is seen by some as valued turf, worthy of defense against non-diagnosed interlopers.  This is not without reason, though in my view the reasons involved are short-sighted ones.  Any person who self-identifies as autistic is I would think almost by definition seeking respite from a life of quiet desperation:  a world in which their experience of it finally makes some sense, however cockeyed, and peers among whom they don’t have to work so hard to fit in and be understood.  That anyone should be required to produce a note from their doctor for this seems awfully small-minded.

At any rate, before and unless such people know they even have the option of identifying as autistic, their confusion and exhaustion goes without explanation, as it did for Clay and me.  It’s doubtful we will ever have reliable statistics here, but I ask you to consider that the unaware autistic make up a majority of that shifting, amorphous cloud we ineptly refer to as “the autistic spectrum.”  At the very least, I suggest that such people exist in numbers that are to be reckoned with, and that their struggles and their fates are ultimately wrapped up with the struggles and fates of those who do identify or are diagnosed as autistic.

I say this because so many of the challenges faced by autistics come of the stigma imposed on us by society for our behavior (including our expression of inherently different perceptions and perspectives), regardless of how or whether that behavior is labeled. What we have in common—in terms of day-to-day experience—is not so much autism as we’ve allowed it to be defined for us as it is that felt necessity of living if at all possible behind an invented and expensive fiction.  This is a voluntary act of self-impairment which feels necessary in large part because until recently we have been isolated from one another’s experience, unable to speak or know one another as a community.  We have with the internet become able to do this; where the drama lies now though is in when we will become willing to do it.

It’s true, one of the highest barriers to this community’s chances of coming together may well be one thrown up by the unaware autistic themselves.  Here too there’s a lite version of the harrowing dynamic laid out at Ballastexistenz this week, in which Aspie Supremacists are willing to throw Real Autistics™ under the bus for the sake of perceived legitimacy.  Worse in some ways is that among the unaware autistic, this often happens at the level of psychological projection, in which there is an exaggerated negative reaction to autistic behavior in others because of an inability to come to terms with autistic traits in oneself—all of which goes on unconsciously, and is experienced as being self-evidently rational.

As someone who has had some experience trying to talk various persons down from such exaggerated reactions, and/or gently suggesting to certain people that they might find their character and experience of the world well-explained by autism, I’m quite aware how unwelcome such efforts can be.  The uniform assumption is that identification with autism can only make one’s life more difficult, not less.

Whether diagnosed, self-identified, or unaware autistics, what we have in common though seems more significant to me than what sets us apart.  It’s not so important to focus on the label of autism, I don’t think, as on the experience of living with the knowledge that one’s legitimacy as a person is threatened if one is unable to produce a mask.  True, people live behind masks for all sorts of reasons besides autism; to the extent though that those masks are imposed rather than chosen, it is our task, autism’s task, to find ways to sidestep and diminish those forces which compel people to present a false face to their family, friends, or society.

That makes for a much larger undertaking, and seemingly a hopelessly idealistic one; it’s also how we avoid remaining divided-and-conquered as we’ve been for so long, and how we reverse the flow of legitimacy to run toward rather than away from autistics who are unable to pass.  It’s how we in turn enlist others in working toward our goals, and how we keep track of our place in the larger scheme of things.

Fifteen decades on, lives of quiet desperation still make for a nice poetic turn; then or now though it’s not as if such lives are anything we need be sentenced to.

(Thanks to KWombles for the reminder which led to this post.)

Mark Stairwalt on 03/19/10 in featured, Society | 4 Comments | Read More