“Autism Awareness”

Or, “Wait — you’re saying that YOUR prejudice is a ‘symptom’ of MY autism?”

So, the dreaded “Autism Awareness Month” has arrived, and thus, the seasonal deluge of parental angst and professional avarice shall soon be upon us.

For my own part, I will indeed be attempting to participate in the “Blogging for Autism Awareness” project. Here, have a button: [deleted by host]

As words are often in short supply for me (well, coherent ones, at least), I expect I’ll mostly just be linking back to various classics in autistic self-advocacy and disability rights genres. But for this stab, I’m going to indulge in a bit of self-quotation, plus links…

In a recent e-mail, the intrepid Ari Ne’eman of ASAN asked if I might have any talking points to contribute for future discussions with Dr. Harold S. Koplewicz, pertaining to any future “awareness” campaigns to be embarked upon by the famed Child Study Center at NYU. Sometimes, my random replies to random e-mails take on a life of their own, and I end up expounding endlessly on things I should be saying to the world at large. When I sit down in hopes of doing a bit of formal blogging, however, words flee from me like frightened mice.

So, rather than risk never getting around to saying these things at all, below is the bulk of my reply to Ari, with some edits and links added.

——

I still think one of the most important points to drive home, and one of the most difficult to convey with any clarity, is this:

1) The continual day-to-day effects of widespread social prejudice are, almost without exception, far more genuinely debilitating, both in the immediate sense, and throughout the life-span, than anything that is truly intrinsic to autism itself. And in the case of intrinsically debilitating mental illnesses, that social prejudice is an enormous part of the “vicious-cycle” that very reliably erodes self-confidence and functional competence, thus making the debilitating symptoms progressively far worse than they would otherwise become in an accepting and supportive society. But the prejudice of society is not a “symptom” of autism, nor of any genuine mental illness — it is an independently operating cause of needless psychological harm and distress. To trivialize or ignore the role of social prejudice as an independent cause is to leave that cause free to do its worst — to continue destroying lives.

As you well know, such a great many of us have said this countless times, in countless different ways. The first sentence in the above has become nearly “echolalic” for me. I wish I could find a way to say it that is more accessible to a wider audience, but I’ve had no luck with that. For those of us who live it, it scarcely needs to be said. But for those with no insight into the matter — just as is the case with “white privilege” and such — how can it be put into terms and concepts that will convey anything useful or meaningful to those who have not experienced it? For most people, it just doesn’t translate at all.

Getting back to Koplewicz, that message clearly hasn’t gotten through to him with any real impact, if at all. As you may recall, his reply to me on this point was both evasive and self-contradictory. Similarly, NIMH director and IACC chair, Dr. Thomas Insel, has apparently managed to sidestep it as well, despite enormous effort on the part of so many. Kathleen Seidel’s letter to him, three years ago, and her subsequent reply to his reply, were both polite and extraordinarily lucid. And yet, as I gather, he persists in the worst sort of inflammatory rhetoric (“wipe autism off the map“? Did he really say that?). But, of course, anything we say is dismissed as a “personal attack.” How to break through that kind of entrenched bias and cavalier disregard? For Koplewicz in particular, the point must be made — or rather, the answer to his evasion — whether he can stomach it or not:

2) The clinical community IS at the very forefront of sustaining social prejudice — by virtue of the very language and imagery they use in describing human difference — and no outpouring of “good intentions” can absolve them of responsibility for what they say about us.

Now, personally, I see little hope of getting through to Koplewicz and those like him (and Insel appears to have been cut from that very same cloth). That’s why I feel it’s necessary to take our arguments to them, and their replies to us, and make it all readily available to the public, along with our analysis and criticism. If using such means to bring public pressure to bear upon them is the only way to motivate them to govern their own behavior, if not reform their views, then so be it. Obviously, they won’t like it. But they are presuming to tell the world what to think about us — it’s hardly reasonable of them to expect us to stay silent.

I have yet to read Koplewicz’s book(s), and I want to do so before launching any more specific arguments against what he advocates. But, from what I have seen thus far, I think I have a pretty good feel for his rationale, and his “ethics.” As he seems to lack the benefit of a sociological perspective, I honestly don’t think him capable of grasping the enormity of what social prejudice can do. Now, his main premise, “it’s nobody’s fault,” is something I might agree wholeheartedly with, but in a very different sense than how he uses it. Deconstructing the “blame game” and coming to terms with a realistic grasp of personal responsibility — if we are to approach it with any honesty — is damned hard work, and takes most people a lifetime. There is no miracle pill, literal or otherwise, that can spare us the arduous soul-searching and self-reform that admirable figures throughout history have had to face in leading the way to the wholesome and ethical life. For those of us who wish to follow, there are no substitutes, no surrogates, no “magic bullets.”

But with his nearly exclusive focus on “brain-disease” medicalization of human difference, Koplewicz actively trivializes and marginalizes any sincere acknowledgment of the brutal realities of real mental illness as experienced by the actual victim, and most consequentially, he trivializes and obfuscates the bulk of its real causes. By consistently pretending that there is no connection between “mental illness” (by his definitions) and the preponderance of psychological abuse that continues to pervade our society, he is being no more ethical than those who claim that victims of rape “asked for it” or “got what they deserved.” Koplewicz may not be explicitly blaming the victims, but he is quite irresponsibly diverting attention from the primary cause, thereby further enabling abusers of all stripes.

Added to that are his many vested career interests — among other things, his childlike devotion to the psych-med industry is the stuff of legend. From where I stand, Koplewicz seeks to create a “feel-good” movement for parents and professionals, where, instead of the hard work of honestly facing and coming to terms with their own possible roles in harming children, he warmly invites them to shift all responsibility onto some abstract construct under the conveniently amorphous heading of “medical issues.” This diversion is not remotely helpful in understanding or addressing any genuine form of mental illness, but it is extremely compelling for those who unconsciously seek absolution, and it is very profitable for those who seek to pander to the angst of outright abusers, and of those parents who are just plain confused. It sweeps the primary cause of mental illness under the rug in order to sustain and inflate the market for whatever “services” the mental health industries wish to sell. Deliberate or not, that is the effect, and that effect is part of what drives the process. Round and round. Meanwhile, children continue to suffer abuse and exploitation in the name of “love” and “treatment,” and as they become adults, the cycle begins all over again …

And Koplewicz, Insel, “Autism Speaks,” Big Pharma, et al, are all uniquely positioned to profit from this cycle. On the flip-side of the hype-machine, we have Kirby, Wakefield, Geier and Geier, well-heeled anti-vax lawyers and countless others, likewise poised to make a killing from whatever misinformation and fear they can peddle.

And there we are, right in the middle — those of us who must actually live the crumbs of life they leave us with; we who both camps of exploiters insist they only want to help, though by their own rhetoric and posturing, they make of us their mutual arch-enemy — our voices drowned out by reactionary shouting from both sides. Some of them really are True Believers in their various causes, but it makes no difference how sincere their “good intentions” may be. The effect is the same. They lavishly pave the road, and fully expect us to ride it straight to Hell, thanking them all the way.

I recognize the merits of trying to work with them, to some extent, but I find it hard to avoid a sense of futility in that regard. Most days, I feel that the only possible progress can come from exposing what they do. But to do that effectively, of course, is not only very complicated, it also places at risk many aspects of cooperation that might, despite my cynicism, truly lead to reform. In the face of such ambivalence, my philosophical roots chime in to suggest the proverbial “middle way.” Maybe that’s really the hardest part of it all: finding the right balance between defiance and cooperation — or harder still by far, finding the balance within ourselves to walk a straight line amid conflict.

Hmmm …