Saturday, March 25, 2006

Autism and Quackery

Brian Deer investigates MMR - American autism society

Quacks target desperate quest of parents
as autism organisations take no action

In an effort to talk with Andrew Wakefield, Brian Deer attended a meeting of the Austism Society of America in Indianapolis in October 2004, and found it to be partly funded by quacks, who rented stalls at the entrance. One was promoting "transfer factor", based on the evidence below. When Brian Deer asked about the claims in the brochure, and whether the "paper" beneath it was a proper basis for selling products to the parents of autistic children, conference organisers had Deer ejected by
security staff.

Transfer factor was pioneered by Hugh Fudenberg, whose medical registration status is republished by Brian Deer at this website

This is a "must read" if you are personally or professionally concerned with Autism, it's causes and potential cures, if any - and of course, it opens the question of where your money is best sent.

I've quite a lot of reason to question the ethics of many of those engaged in presenting cures and treatments. They are generally very expensive, and the science behind them questionable at best. Worse, those involved react to questions in ways that show they are indeed questionable persons, with more blusters than answers.

Although I am on the autistic spectrum - with Asperger's Syndrome - I don't personally WANT to be cured. That's my bias. I'm quite convinced my traits are just that - traits. And frankly, I value what I can do and wish to do far more than I desire to do the things I can't do and wouldn't want to if I could. The occasional eceptions to that rule are handily coverd by my other "disorder," multiple personality. It gives me a range of options for dealing with crisis and various sorts of people - often the same thing - on at least a short-term basis.

There are, however, more than a few symptoms of each neurological condition (for want of a better word) for which I'd appreciate viable treatment. I doubt my list would have a lot of overlap with the things my parents thought I should want, though.

I personally oppose all forms of behaivoristic training on the grounds that, while they may have some limited application in areas of critical need, nobody needs eye-contact to survive. The emphisis is all on creating a reflexive behavior - without giving the child any reason why they should do that. And many of these behaviors and compliances are uncomfortable, at best.

The reason I don't make eye contact is that my brain doesn't work that way. I view faces as being one of a piece with the whole of the rest of my surroundings. It may or may not be interesting, but it's no more important than the TV, say.

"Look at me when I'm talking to you" doesn't impress me much. I know it's the polite thing to do. I also know why it's the polite thing to do; acknolegement that the person speaking is more important to you than the TV or the book I'm involved with.

It's also acknoledgement that they have an inherent right to interrupt me.

I've learned that usually it's too much trouble to correct neurotypicals about the assumptions they make, such as the presumption that their thoughts are more important than mine, or that I can and should put something I find compelling aside to indulge their whim - especially when it's usually some social noise.

I've learned to accommodate their behavior and interpret the meaning and intent behind some of their non-verbal communications.

But that doesn't mean that I'm going to validate their silly pack-dominance games or participate in another round of ritual butt-sniffing. I've learned ways of avoiding all of that. I learned body language - pretty much as a foreign language - and I use it to communicate my unwillingness to play nonconsentual Dominance/submission games.

We told our son "Look at their eyebrows. They can't tell the difference and it makes them feel you are part of their pack structure." And of course, not meeting their gaze indicates weakness, and you will be bullied. I do wish I'd learned that in grade school instead of High School.

It's an old speaker's and politician's trick. It appears that you are directly meeting the gaze of the other person, when in fact you are avoiding it's painful glare. And yet to the mark - it seems that your sincerity is boundless.

I've found that our son has no difficulty emulating any behavior that he wishes to, if he understands why he should. Until then - good freakin' luck.

But he's had the good fortune of being raised by people who didn't try to make him conform to a false sterotype of normalcy. Instead, we work on finding strategies that work for him in being himself. This year has been difficult in this regard, as we have had repeated struggles with his HS teachers, who are collectively lazy, pretentious fools who have gotten an undeserved reputation for acedemic excellence by virtue of simply "encouraging" the "less promising" to leave.

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