Monday, November 03, 2008

Creating Panic

I've been meaning to write this since we went to the ARM conference, but I've been putting it off thinking I'd link to our conference presentation with this. Then my mother pointed out that our conference presentation has some stuff about me, such as pictures, that I'd rather not have people viewing over the Internet. So, if I can think of a way to edit it so it doesn't reveal stuff I don't want revealed, I'll look into to putting it up, but in the meantime and in case I don't put it up, here's the post I was thinking of.
I've known for a long time that many parents of autistic kids are desperately worried about curing their children. It's hard to do much in autistic self-advocacy without seeing that. And I knew the 'experts' were reflecting this desperation by peddling miracle cures. I just sort of assumed that parents were so desperate because of societal intolerance for difference, and that the experts were simply responding to that. This is the idea encouraged by a lot of criticisms of quacks 'taking advantage of people's desperation', an idea fairly accurate in the area of cancer treatment that has also been applied to autism treatment.
But my mother's conference presentation argued something different. She looked at the stuff that I found, and suggested that the experts were in fact creating this desperation, not just responding to it. When they say unfounded claims like '90% of untreated autistics are institutionalized' (popularly tossed around by ABA proponents, with no reference ever being given) or 'you can't wait nine months for an assessment, you can't even wait two months' (which was said by Dr Greenspan in the book Could it Be Autism?), they aren't just getting it wrong, with no motive for it. They are, in fact, creating demand for their product, just like advertisers do.
This doesn't mean society's attitudes towards difference aren't part of it. They are. The very reason these dire threats carry so much sting is because people are scared of disability. And they also feed into this, in that such threats make people even more scared, but I know that fear of disability came first. In fact, in the 1800s, the 'experts' played a much more positive role, counseling against things like keeping your disabled son locked in the attic and saying 'we can teach them something' (see On Some of the Mental Affections of Childhood and Youth, by John Langdon Down). That worked to bring them into their role of treating and educating developmentally disabled people. Now they're doing something else to maintain and build that role.
And while I don't know what the 'experts' are thinking when they do this, I think many of them are well-meaning. This might, in fact, be unintentional, be them simply repeating what they've been taught from outdated case reports of institutionalized and neglected or just simply unusually severe cases, and comparing those reports with the children they've seen with treatment. But in some cases, it could actually be intentional.
What made me realize this was my father's obsession with Westerns (I'm not sure why, he always criticizes them as poorly written, but he likes to read them), because he happened to mention that many doctors in those stories would exaggerate the severity of their patients' conditions so that when what they predicted didn't come true, their treatment would get the credit. And when a child who was described as echolalic and noncommunicative (as those terms are used, not always accurately) at 5 years old develops communicative speech and isn't institutionalized, if parents knew that Leo Kanner's follow-ups back when psychoanalytic treatment was in vogue found that outcome to be relatively common for kids who were echolalic at 5, they wouldn't be as grateful to the ABA therapists as they'd be if they'd been told their child would still be echolalic and noncommunicative as an adult.
This also explains the tendency for parents to actually view their children more negatively after diagnosis. Although parents who misinterpreted troublesome autistic behavior such as literalism or sensory overload as defiance or manipulation often view their child more positively after they are diagnosed, many parents actually viewed many of their children's differences fairly well pre-diagnosis. One parent, in a book I read, talked about how she though her kid was very focused, organized and intelligent - after diagnosis, she interpreted the same behaviors as indicating overfocused attention, repetitive play and splinter skills. It may be partly an accurate shift in expectations, since a non-autistic gifted child typically does better than an autistic child, but partly it's that such behaviors are overtly recategorized and relabeled, even when both labels are equally accurate or the pre-diagnosis one was more so. Cute little quirks suddenly become signs of a disability (another example, in Her Name is Montel, is when Montel's father finds out her odd catlike cry is a sign of Cri-du-Chat Syndrome).
Here are what I see as the major components of how the 'experts' create panic and sell their therapies:
  • unrealistically negative prognosis - such as the 90% institutionalized quote. This can occur without any of the other features in doctors who aren't selling any treatment, but often goes along with promises of miracle treatments to change that prognosis.
  • reframing neutral or positive traits as negative - as seen above in the shift from seeing a long attention span to seeing overfocusing.
  • creating urgency - 'you can't even wait two months'. This means that parents do not have a chance to think through what they are doing before they do it.
  • rosy promises of the treatment - such as, in ABA, the repetition of Lovaas's 47% cured statistic without explaining how Lovaas defined cure, how his treatment differed from modern ABA and the lack of independent replication or evaluation of his 'cured' cases.
  • a theory that is never studied, changes when challenged, or both - this is also seen in ABA with the repetition of the neuroplasticity theory (ABA changes the brains of children so dramatically as to erase or reduce autism) in the absence of any study, or in the ever-changing ways the anti-vaccination movement finds to blame vaccines for autism.

(Can you think of any others? I'm sure I'm missing some.)
This shift in my viewpoint makes me more sympathetic to mothers, and also highlights the importance of critical analysis from multiple perspectives. I naturally tend to loook at autism from the perspective of an autistic person, while my mother sees it from the perspective of a parent of an autistic kid. Both of those perspectives, combined with critical analysis of the messages society is sending, give useful and enlightening interpretations that together can give us a more complete picture of what is going on.

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Blogger Jenny said...

I really appreciate your point of view, and we don't hear enough of your side. Thanks for helping me see things in a new way...

11:29 AM  

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