Wednesday, May 6, 2009

THREE MOMENTS IN THE LIFE OF AN AUTIST

I'll see if I can make this succinct, though I'm skeptical. I'm totally Irish and as we see it, why use one word when a thousand will do?
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I was thinking the other day of times when I've felt most vulnerably, unhappily, intensely autistic. It's not that
I lack autistic pride, but that I appreciate my prerogative to determine my 'outing,' and value people who sort of mind their own business and don't feel the need to scrutinize others' oddities. Live and let live is enduring wisdom. But I find when I relive experiences that it's not just trying to say something coherent to someone behind a counter, go nonverbal, melt down, and have people look at me weird that constitute truly hurtful experiences. That's just life for someone on the spectrum, upsetting, frustrating, regrettable, but in the end, inconsequential, especially if I make the flight, get the refund, whatever. But I can identify three experiences when I recognized in harrowing detail what I'm up against as someone on the spectrum.

Moment 1
I am attending the ASA (Autism Society of America) in Pittsburgh. I'm cash poor but I've been invited there by the publishing parent and email correspondent mother of an autistic daughter whose roommate I am. As I circulate the exhibit hall and sessions I know for the first time to what degree I constitute an it, someone reduced from whole person to problematic entity. Call it critical mass.* I make a valiant effort to humanize myself and my psyche and then it happens. My roomie networks with an autism publisher and she invites me to lunch with two of their reps. I find myself aroused by some topic of luncheon conversation and begin to verbally perseverate like mad on something that excites me no end, free associating into and around an elaborate and intricate line of reasoning and observation, when roomie looks at the other lunch participants and says, "See. She's just like my daughter!" Oh, dem pronouns! I am now the elephant man, third person singular, just like that!

Moment 2
I find out Tony Attwood is speaking in the metro area. I must give him a copy of WFAP? Perhaps he can do a wee expert blurb for a new edition. I have to teach in the morning but figure I can make ot from Ann Arbor to the Detroit 'burbs for lunch and Attwood's speech. Delayed just a little I arrive halfway through lunch to find no more food left. I paid for lunch! Those not on the spectrum will have little sense of how debilitating something like this is. On the other hand, whether I'm debilitated whereas an NT would not be, we've both been screwed. Either the caterer didn't cater enough food, or the conference attendees ahead of me got greedy, either way, I've stretched my executive function and budget to make it here and this is not meaningful to anyone but me. I arrived there wearing a makeshift sign saying "Ask me about my book." Had my sign been produced by a proper sign maker I expect I would have had credibility but makeshift means weird. NT culture is about the status quo and propriety, which provides income for sih=gn makers. EEEEuuuwwww! How not NT!! I tried networking those milling around but I was clearly off topic. The P&Ps (parents & professionals) in attendance lacked the capacity or interest (one and the same?) to imagine what women on the autism spectrum might possibly have to offer in their resolute pursuit of triumph over their children. I mailed the book to Atwood.

Moment 3
I am on my own turf, that is, until I come out. I and colleagues, Charles Avinger and Edie Croake, have just done a panel at 4 Cs ( the annual Conference on College Composition and Communication) titled "Normie Hegemony: Culture, Rhetoric, and True Life Adventures in the Land of the Neuro-typicals," my piece of which is "Normie Hegemony: Culture, Rhetoric, and True Life Adventures of Autism." The attendees are enthusiastic and I remain over the moon about the work of my disabled/disability studies CCCC colleagues in making the case for all of us. But feeling endangered in neurotypical hegemony swoops in nevertheless, and for me this happens at a session with an autism focus. In response to something said I, in customary excitable mode, say, "Autistics see NTs [neurotypicals] as grasping, needy." The audience laughs, heartily. Chagrined, I say, "Oh, no! I'm not joking!" And the audience, horribile dictu!, laughs. AGAIN.

It's that pronoun thing again. Reductio ad absurdum autisticam. Why do they willingly detach and discount?

Friday, May 1, 2009

Autism Today?

Autism Today sent out a mass email to recruit people to be part of a panel based on the premise of cure for autism. Do I want to be on their cure panel? I don't think so. Their email and my reply.
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Them:

Email subject: YOUR OPINION COUNTS THE MOST!

Hello!
As a valued friend of Autism Today, you can make a difference!By joining Find A Cure Panel for parents and caregivers of people with Autism, you will be empowered to share your opinions in vital research.What's more, for each survey you complete Autism Today will make a minimum donation of $10 directly to the KEEN Education Foundation on your behalf.Registering is fast, free, and your privacy is completely protected.
Click
HERE to sign up now, and thank you for your continued support!Sincerely,Autism Todaynews@autismtoday.com2016 Sherwood Dr #3Sherwood Park, ABT8A3X3
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Me:
Autism Today:
Once again I am appalled at the way so-called pro-autism organizations are decidedly not pro-autistic. You are defining this panel around cure ideology which most autistic adults find at the very least frightening.

I am also diagnosed ADHD and I have to tell you how different the ADHD community is from yours. Take a look at CHADD, the major national ADHD organization (http://www.chadd.org). It is entirely inclusive. Not only are adult ADDers considered essential to any advocacy groups but many, many of the theorists, researchers, and prominent clinicians are ADDers themselves: Ned Hallowell, John Ratay, Sari Solden, and Terry Matlin, among others. Stephen Shore and Liane Holliday Willey are perhaps the only two invited to the ball of the "autism Community." Perhaps if we all could become cognitive psychologists we would have the kind of critical mass to change the discourse on autism. In the meantime we look on in dismay and fear, for ourselves and the youngsters who are deemed unacceptable as-is.

The ADHD inclusivity keeps the cure hysteria to a minimum because people such as those I've mentioned are far from interested in being cured. In fact, the only place for cure rhetoric in ADHD is in quack internet ads. There is a growing pride in what ADDers are capable of even with severe problems like the statistically significant correlation between ADHD and marriage failure, incarceration, accidental death, and employment instability (e.g., likelihood of being fired), and particular torments suffered by ADDer youngsters: bullying, punishment for misbehavior, severe underachievement.

I'm not entirely sure what accounts for the disenfranchisement of autistic adults or the semantic lunacy of an "autism community" hospitable to everone EXCEPT autistics, but my best guess is an entrenched cultural belief that popularity, or perhaps, likability is what defines a whole person, Willie Loman in overdrive. If one cannot be likable, he or she is fatally flawed. Or maybe the culprit is stigma, pure and simple. I think there may be other issues in the personal narratives of parents that will never be resolved as long as they can hope for a cure.

In the meantime what does Autism Today have to offer me? How can I be sure your organization won't militate against my needs and deepest hopes? In terms of your list memberships and magazine subscriptions, what's in it for me?