Saturday, February 24, 2007

Evidence of Nonsense

The term Autism has become a vast catch-all for a wide variety of traits that range from those that are functionally incapacitating to those that mildly affect behavior and social interactions. Nobody knows quite what "autism" is, save that it is obvious that it's probably far more than one thing and that it causes a good deal of fear and confusion among parents who are moving heaven and earth to find treatments and cures.

Which is wonderful of course, but it's also terrible.

ScienceDaily: Ped Med: The autism treatment challenge: "'There are no standards for safety in autism treatments,' said Steven Gutstein, psychologist, autism specialist, researcher, child, marital and family therapist and co-director of The Connections Center for Family and Personal Development and of the Relationship Development Research Institute in Houston.

...

'There's not a single study to see if anyone is harmed by the treatment, be it biomedical or behavioral,' Gutstein said in an interview. 'The assumption is both are better than nothing, and the more the better, but there are no data to confirm that.'"


Hey, I have an idea; how about asking an actually autistic person?



"I am not a puzzle, I am a person."

This shirt design supports Autistics.org, autism awareness and neurodiversity in general.




Now notice the language I used. "Autistic Person," not "Person with Autism." Speaking as an Aspie - diagnosable with Asperger's Syndrome - and speaking from my experiences dealing with actual autistics, such as those at Autistics.org, It's pretty common for folk on the spectrum to think of autism/aspergers/whateverthehellitis as something they are, not something they "suffer from" that could be cured.

I'd rather be "cured" of opposable thumbs.

And that with full realization of all the downsides that I and those who love me cope with every single day - much to our blended amusement and frustration.

Interestingly - even astonishingly enough, many full autistics, who seem to suffer quite badly from clearly crippling "downsides" feel exactly the same way; our minds are beautiful places to live, and from our perspective, being able to live fully in a neurotypical world exactly as neurotypicals do seems like a "cure" that is far worse than the "disease."

Oh, don't get us wrong - we'd definitely like the hard parts to be easier - but we'd also like you to notice the things we do well without words like "idiot-savant" being thrown about. "Geek" is somehow better, frankly. Not a LOT better, but at least it's an honest word.

Personally, I prefer "eccentric."

UPDATE: Autism Diva has a great long article up that I'd like you to read. I particularly like these two 'graphs, which illustrate her point rather well - and the one I was trying to make. Autism - and so many other things in life - are much more issues of perception than substance.

Autism Diva is reminded of a caller to the Diane Rehm show when Dr. Grinker was on there promoting his book. The caller said something like: "I'm from a large extended family from Tenessee," (maybe he said, Kentucky) "the behaviors I see in my son, that the doctors call "autism" is just how my family is. No one in my family would have sought out a diagnosis in the past because so many in the family are just like this. It's normal for us."

So it sounds like if you come from a family where lots of the kids spin can lids and stop answering to their names at 12 months, everyone just says, "Yup he's a Johnson, awrighty. Wonder if he'll be able to do that calendar trick like cousin Ted." The caller certainly didn't indicate that the family had a habit of mourning the birth of another of these weird kids, and it's safe to assume that some of the members of the family were quite autistic and others were more like normal-ish, like it is in little Hayden's family.


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