the stressful choices of political identity

[mellowtigger]

While I have thoughts that reach much farther than this tonight, I'm going to limit myself to just a review of this month's newsletter from the U.S. national organization for autism advocacy.

I have an uneasy association with the Autism Society of America (ASA). I wouldn't even be a member with them except that I'm a member with their local branch, the Autism Society of Minnesota (AuSM). So I get the ASA newsletter called "Autism Advocate". This month's issue actually had articles that I found interesting to read.

demerit: education
ASA claims it's trying to provide timely and relevant information. So you'd think their newsletter (with its science, legislation, and other news) would be available online. But it isn't. It's a member-only benefit in printed format. *sigh* So you get to learn potentially helpful information only if you pay your membership dues.  Not a very good advocacy/education process, it seems to me.  For an organization with a $3 million budget, I'd think they could put their quarterly articles out on the web for public access.

demerit: cure
I already know their aim to help efforts to "cure" autism, but even the articles this month point out the ambiguity (polite rephrasing of "hypocrisy") of their goal.

Some would contend that even if children have achieved all components of our definition of recovery, they are simply learning how to function better; that is, they have not actually recovered from autism, per se. We agree. Whatever was awry biologically, physiologically, and genetically has not and perhaps cannot be set straight by behavioral intervention alone."

So, translated to GLBT terms, they want to claim that they've "cured your homosexuality" if they can make you "pass" in straight society, disregarding what kind of life you have to live inside your skin in order to make the charade believable. This goal is exactly why some autistics turn so belligerent when dealing with cure groups.  *UGH*

merit: useful suggestions
I think it was last year that I mentioned at an AuSM support group meeting that I wished I could build myself a stress-meter. I imagined it as a glove for one hand that could measure heart rate, oxygenation, and perspiration. It could give audiovisual indication of stress level, alerting the wearer and others nearby to their internal situation. Lo and behold, researchers at MIT have exactly the same idea. They found one particular incident when an autistic appeared perfectly calm outwardly and yet measured a 120 beats-per-minute heart rate because of their stress level.

Tomorrow, Michael may choose to wear a small comfortable wristband... which can sense and wirelessly communicate selected internal physiological state information to his teacher.

I've sat uselessly on my hind quarters, so hopefully these MIT folk will actually create the device rather than simply ponder it like I have.

merit: research reminders
Finally, finally, finally, they are expressly stating some matters that need to become a standard part of scientific research into autism. They even have a convenient list of single words to describe the topics.

• Chronicity - ongoing and active processes, not just "inborn wiring problems"
• Plasticity - including variability within individuals, sustained improvement, changing features, improvement in different levels
• Complexity - it's not just behavioral and communication differences but also neurological, medical, metabolic, molecular, and genetic
• Heterogeneity - there is no one autism, as it affects each person differently
• Non-specificity - there is nothing unique to autism, each of its deficits can also be found in other populations, but the constellation of deficits is often similar for the various kinds of autism.
  

So I compute no net change when using the merit/demerit arithmetic.  *sigh*  I guess it's appropriate, though, since I see myself as more of a neutral party in these matters than most other "autism advocates" of whichever political stripe.

 

Comments

[bigsockgrrl.livejournal.com]

I like the idea of a stress meter, but I'm skeptical that I could find a way to wear such a thing that wouldn't be stressful in itself. I hate wearing things on my hands, wrist, or neck. (Yes, they say small and comfortable, but I'm not sure I could put up with it long enough to learn to be comfortable. This is the reason I gave up on watches long ago.)

[mellowtigger]

Yes, I'm the same way. I didn't even want a high school graduation ring because I knew I'd never wear it. My parents, however, insisted. I dunno, probably something to do with rites of passage or something. I don't wear a watch either, but that has more to do with bands pulling hair out of my arm.

I was describing my hand device last year as a kind of bicycling glove, since it has the fingertips cut out to maintain grasping contact and sensitivity. Kind of a mini-gauntlet. It would measure skin conductivity/perspiration, heart rate, and maybe even oxygenation (via the thin webbing by the thumb).

I thought that it would be useful in two ways: 1) to beep audibly to try to snap a person out of a reverie to focus on the real world again, and 2) to show a visual scale so people nearby could gauge stress level of the person with better accuracy than trying to watch their facial expression.

[bigsockgrrl.livejournal.com]

Yes, a gauntlet could work. I often wear fingerless gloves. I don't know why those bother me less... perhaps it's because the pressure is spread over a larger surface area.

It's a great idea. It could work well for more than just aspies, I think. It would be a great antidote to problems created by fundamental attribution error.*


*From Wikipedia: "In attribution theory, the fundamental attribution error (also known as correspondence bias or overattribution effect) is the tendency for people to over-emphasize dispositional, or personality-based, explanations for behaviors observed in others while under-emphasizing situational explanations. In other words, people have an unjustified tendency to assume that a person's actions depend on what "kind" of person that person is rather than on the social and environmental forces influencing the person. Overattribution is less likely, perhaps even inverted, when people explain their own behavior; this discrepancy is called the actor-observer bias."
http://en.wikipedia.org/wiki/Fundamental_attribution_error