Askew Assumptions: Misrepresenting the Neurodiversity Movement in a Major Way

Ok, so I am now officially back on the web, having settled down in my home at a rate which is comfortable. I've been doing various things (mostly getting settled, but some other stuff too). Mostly things of note personally relate to my mother's state Supreme Court run and such things involved with that, and otherwise playing two sets of very strange phone tag. But I digress, as I never intended to write about that here, did I?

No, indeed, because today my mind has been floating around on the New York Magazine article on neurodiversity. And, well, I'm not sure how all I think about that, to be sure. Usually, things in autism related news are depressing as per generally autism and the stereotypes involved, which now are so common that I've adopted this kind of bitter acceptance form of a defense mechanism. When such things apply to neurodiversity, though, it's not yet quite the same. Given that, I'm going to be dissecting this article at some length, so be prepared for the ride.

It's written by Andrew Solomon, about whom I know nothing outside of what he writes in the article. We'll come back to that in a second. But it starts with the Ransom Notes campaign. It's done in a third-person distance and that might not have been bothersome but for the fact that, given any other type of minority status, the tone would not have flown well. Dr. Koplewicz is quoted as saying, "People kept misinterpreting the ads, and there was a contagion to that. And there was no way we could seem to explain ourselves". Could you have vaguely imagined this if these ads were related to an explicitly racist idea? No, probably not. It's not a defense that works for a truly inflammatory message, and this was perceived, definitely, as a truly inflammatory message. Given that, I pretty much began bracing for the bad.

Turns out, I still have good sense of such things. On the very next page, Solomon says, "I’ve heard these arguments before and been swayed by them, both in the case of the deaf community and on the matter of mental illness. But to me, autism was different. Whereas deafness creates relationships, autism seems to cut people off from one another. I took the much-publicized agony of parents of autistic children to be a marker for the despair of their children. Autism’s deficits—for the head-banging, nonverbal children and for the socially inept, obsessive ones—seemed simply too bleak to celebrate, and I did not see how any wishful rhetoric could alter that fact."

I think my jaw hit the floor, not yet to return quite to its place a full twelve hours later.

Oh, where to start? First, that autism exclusively cuts people off from one another is so bizarre an idea. Fly the "illnesses create relationships, except for autism" line past someone with cerebral palsy, and perhaps you might gain a sense of the prejudices and alienating way that such conditions hold. And, yet, autism only holds this distinction? Simply prejudice; and though it implies that things might get better in terms of such prejudice, I wasn't too hopeful in the long-term. And the rest makes pretty clear, from "autism's deficits...seemed simply too bleak to celebrate", what a construction was likely not to follow. I knew now that all wouldn't end well, because the current autistic advocacy simply hasn't done a good job fixing this. I mean, does anyone things that anyone honestly just celebrates "autism's deficits"? Does anyone celebrate the deficits of technology? Does anyone celebrate technology? Get the difference?

And it doesn't stop; he already begins talking about Katharine Seidel's "obsessions", and then draws a debate right in three, between "the environment camp", "the genetic camp", and "the acceptance camp". I have never known the distinctions to be quite this clean in any autism debate; while the "environment camp", as construed, exists pretty solidly, it's not even exclusive from the "genetic camp", and the "acceptance camp" isn't even necessarily assertive into cause, and certainly not even that it shouldn't be "addressed", and that those that believe in the "genetic camp" only thing in terms of the genome; these are solid positions that, quite honestly, don't exist nearly as cleanly. For Solomon to therefor assert that these do exist so distinctly is poor.

Of course, and then we hear Schafer asserting, "Please don't write about [individuals of the neurodiversity movement]. It’s a handful of noisy people who get a lot of media attention but do not represent a broad swath of the autism community. Best for them to be ignored. They want to redefine autism as something nice that Einstein and Bill Gates had. They’re trivializing what autism really is. It’s like stealing money from the tin cup of a blind man when you say that it’s not an illness." If it was Solomon who used "the autism community", I might have puked; since it was Schafer being quoted, I just became nauseous. That kind of phrasing is bound to go and assert a single-minded entity and will that is the "autism community". Such a view, that of an organic, singular constituency, is bound to retard any kind of popular movement as it relates to autism. By popular movement, I simply mean a movement that has the strength and the ability to sustain itself through the activity and voice of distinct individuals working together. Not only is Schafer implicitly implying a brokerage model of politics for autism (a representation which has made such a described movement above impossible for black individuals; for reference, Adolph Reed Jr.'s Class Notes is fantastic as to that point), he's not even a member of the constituency whose lives are at stake!

Of course, and then he goes into an "us and them" and then asserts basic stereotypes of the neurodiversity movement. Not pleasant, but compared to that usage of "autism community", it pales, because at least it leaves open room to talk about the issues. With a truly successful usage of such a notion of "community", any such democratic ideal gets thrown down the drain.

And the, amazingly, Solomon actually has the guts to quote John Best. The John Best (or foresam) who engages in ad hominem arguments in long posts and even advocated for the eradication of an individual (Amanda Baggs, whom he doesn't think is autistic, and has made up several stories as to that point) in his very subheading. Did Solomon actually bother to read his blog?

Anyway, he notes that a lot of time in discussions regarding such movements is spent defeating straw men. He notes one straw man neurodiversity advocates tend to deal with (the "you don't want to help autistic children" statement), but otherwise leaves this blank. And then he says he gets talked to a lot as to what to say, and compares it to the Cold War. I don't know what was said to him, so I won't address it here, but he doesn't provide so much an example from both sides, so I'm just not convinced. He seems to be basing judgments off of apparent attitude, rather than on substance.

He does note Richard Roy Grinker, as to the discussion or lack thereof, saying "I’ve compared it to the standoff between intelligent design and evolutionary biology, that both use the language of science but with premises so different that dialogue is impossible." I'd say this is correct (though it's inherently not much of a statement as to substance; I can use scientific terms to discuss the upcoming invasion of pink rabbits, doesn't make it scientific). But it's Solomon's context of such a quote, as to the "deep distrust of the motivations of scientists", that such terms are related to. Honestly, does anyone in the neurodiversity movement think that scientists are intending to harm (note; motive)? Umm... not last I checked... so such a distinction is strange indeed. Again, Solomon has no support to back such a distinction.

He noes Hannah Poling, genetics, the debate surrounding that, etc. Again, he hits me off guard by noting "'There are serious problems with taxpayer and well-meaning charitable funds going toward that kind of research,' Ne’eman says. 'We need an awareness that not every dollar given toward autism causes is helpful to autistic people.'"as anti-scientific. Either he means that redirecting research funding is anti-scientific (thus any such stopping of my billion-dollar research project into the upcoming invasion of pink rabbits becomes anti-scientific) or that the idea itself is anti-scientific (which, umm, it isn't. What the heck does that even have to do with the scientific method? Somebody?), and either way he's just reacting and not thinking. (He does not he was "nonetheless moved", but doesn't address again the "anti-scientific" nature of the quote).

He does, to his credit, then note a case of a child receiving ABA and the opposition therein from autistic individuals. This is a legitimate criticism, and I think it's fair. Now, I do have issues with some of the ways the practice is presented (I don't think it ameliorates so much as a wink of autism itself as much as some of the related issues, and that ABA's premise is presented as such is dead wrong, but I still find it important as an educational process), but in so far that there has been opposition I don't disagree that such opposition is problematic. But I don't think (and, having sat across from somebody who was in the UNR ABA program of which I was the very first client, though she came later than myself) ABA really does want to change the child, and this was a view is absent from Solomon's piece. This, though, is more an issue of my views commonality than of neglect, so we move on.

Solomon continues to go on to quote Thomas Insel of the NIMH as saying "parents often know more about autism than doctors" (the total truth value of that statement should be contested heavily by autistic individuals, and that he didn't give an autistic advocate room to respond to that is annoying. Again, notions of the "autism community" in slightly different form; "parents" as the singular, organic model instead), and to talk about contesting notions of love (this is a moot point that is obviously contingently based on the prior philosophical viewpoints. To include it as such shows how much more he misses the mark). He notes the discussion of the notion of "cure", has two properly evasive answers (I would be more specific, as a "no, but"), and then notes an autistic individual who blogs against neurodiversity. I've never heard of this individual, and he's noted in almost a token-like fashion (sorry, Jonathan Mitchell, but it fits right into that mold).

So, of course, he tries to find a middle ground. And I don't think he succeeds, and he doesn't include half-an-ounce of nuance. Rather, he just simply uses Grandin (who, on this point, I couldn't disagree with more) to distinguish keeping the high-functioning autistics and tossing (fine, curing) the lower-functioning autistics, again as stable categories. In my view, they aren't stable categorizes, and certainly a view as subtle as to disengage the symptomatology from the condition itself wouldn't be included in a piece thus far with such little subtlety. But one could hope, no?

Anyway, he then bashes Ne'eman for noting the Autism Every Day notion of driving an autistic child off a bridge isn't very loving. Here, Solomon shows that, all this time later, he still is missing the point in a major way. He even says, "Autistic children seem frequently, by virtue of the extra care they require, to inspire a desperate, enormous welter of adoration, fantastically powerful even when it is striated with frustration and sorrow. The love predicated on hope is as profound as that predicated on acceptance." Apparently, he never took the Sinclair essay to heart; hope is predicated on a child who doesn't exist. If you're love is predicated on someone who doesn't exist, it isn't predicated on the child who does exist. Therefor, it isn't loving of the child at all when framed like that. It's loving an idea of someone who might be; if it has a loving effect, it is only in so far as in the more individual suffering that arise from conditions related to autism (not unimportant, but still not respective of the individual). Acceptance, hardly predicating itself on that, is far more potent in that regard. And, again, he quotes Insel (who doesn't clearly understand autism remotely like I do).

Solomon then creates a straw man himself, noting the difference between helping and accepting as "wanting your cake and eating it too". It isn't, by a long shot. Accepting the condition as a whole and helping with the individual deficits that come with any condition while celebrating the positives is the normative. That he fails to distinguish, yet again, was disgruntling, though by this point my standards were kicked so low to the ground it was expected.

It didn't stop me from being annoyed that, at the end, Solomon still provokes the standard "low" and "high" functioning autism as static values, and that he still said it was "unscientific" (again, with no support), and that such individuals were involved in "self-important, spurious arguments" (to the contrary here, I tend to try and be pretty universal about my human rights, thank you). The only real redeeming thing was that he did admit he started skeptical.

As I noted, I felt I should go at this one at length because the subject matter itself is different, and it's more directly, in my view, overall biased. It certainly doesn't settle well with my political, secular, humanist, or egalitarian sides. Solomon, for having preached about learning about the neurodiversity movement, might have done better to ask certain questions, as it is clear that his assumptions were, in this case, quite unfortunate. I suspect this will remain the case, given the neurodiversity movement's at-current small size and frame.

Who knows? The next one might not even quote John Best.

Whew, It's Over!

Well, indeed, it's over. I turned in my final psychology test and, with it, have completed the year. Or at least potentially completed it, as I might do an extra essay for more personal reasons in relation to a class than for academic reasons (actually, considering its content, it may not be wise academically, but that's not the point, as I'd be writing it on a matter of principle). It kind of feels good, and it feels better to know that I'll be getting out of this tree-constructed prison that is Great Barrington and back in Reno, where I can bother my little brother by my very presence and let my dog out during the day.

And, suddenly, I have time and space. The only thing I don't have is my time and space. I'm writing from the library, having shipped my computer via UPS. A small inconvenience, to be sure, considering that there's little in my room now that I'd need. But it's still odd that I can stretch without kicking or punching something or another. Plus, I'm being forced to work when the library wants me to, and that's a tad annoying.

Anyway, at some undisclosed point during the week, which right now I think is Friday, I'm headed back to Reno. After I'm home, I've got a number of little meetings I have, some catching up to do with some friends, and having some highly desired downtime. And I'll have my pad thai.

Oh, and I'll be helping Mom with her campaign (did I mention she's running for the Nevada Supreme Court? It's pretty exciting, and I've missed a lot of it, being in school). Then I'll be helping some fundraising efforts as well, probably also helping directing said efforts as well. So I'll still have my hands full a bit. But it won't be as hectic, all considered. I think.

Until then (and especially when the library isn't open), there's going to be this little tense gap of time where it feels like I should be doing something and, to some degree, won't be. During that period, I'll probably post again something more issue specific (not sure all what yet), but it won't be now, as its getting a little late. And there's a little too much stimulation here right now, and I've been making some really obnoxious typing errors.

So, until then, know that I have moved from my accountant phase into my fidgety, distracted stage. I wonder if I have a rested, at peace stage? Probably left it in Reno.

Busy, Busy

Well, I just wanted to check in. End of classes are coming up and, given all of the work involved, I haven't had nearly as much time online as I thought.

But I should be able to put a post I've been kinda planning up come next week, where I get a lull
in work before finals. So I'll be back, just give me a few days to write some stuff that, well, is really quite boring. In fact, I've been writing so many boring things over the past few days that it's just ridiculous. I don't know if it's just because I've already thought through most of the stuff I'm writing or if it's the actual subject matter itself, but either way it's not exactly intellectually stimulating. Yet, work is work, and so I will be absent for just a bit longer.


Until then, know that, if you happen to be a highly bored person, you're in good company and if you're not a bored person, that you're at least not quite where I am, in addition to whatever else. Ah, well.