Sunday, October 29, 2006


One of the most interesting things that lingers with me from the Autism and Advocacy Conference organized by Jim Fisher and Kristina Chew is the way that there is a double meaning in the word "qualified."

There was conversation regarding the idea of not having a series of letters after your name, but perhaps being Q.B.E. — Qualified by Experience. One knows autism by being autistic. One knows autism, differently, but intimately, by being an autism parent. Gaining one's authority and expertise from experience has a long history, only partly usurped by the rise of professional classes with their need for accreditation.

Then there is the other sort of qualification — the speech act that puts limits on what we can state, on what we claim to know. The autistic author J. Kevin Vasey (The Road Trip: Life with Autism) precedes many sentences with the caveat "as far as I can tell." The phrase places limits on the reach of any knowledge claims he makes; the phrase creates a high degree of linguistic accuracy. The phrase reminded me that we can all, within our qualifications, make qualifications.

Qualifications are how one claims ones authority, and qualifications are how one limits the reach of one's authority.

Last week, speaking with a new psychologist who will be coordinating care between Sweet M's school and us I asked how the school observation went. The psychologist went on at some length about Sweet M's limited social skills and communication dysfunction.

Then she suggested that I attend a support group for parents of ASD kids that the NYU Child Study Center has recently started. (At last, a support group!).

I said, I'd like to do that. Does that mean that you would be saying that Sweet M is ASD – that she is autistic and that we should get that diagnosis?

Well, not exactly, she said. But her spectrumy symptoms are creating problems for her socially at school.

We went on to discuss the ambiguity of her neuropsych report — which reads as though she's EBA (everything but autistic) — and the relative merits of an autism diagnosis as compared with the potpourri she's had up until now.


It seems that I am diagnosed as an autism parent, despite the fact that no one is yet willing diagnose Sweet M as autistic.

As far as I can tell.


kristina said...

What if they diagnose her with "autism parent syndrome".....

Zilari said...

My diagnostic history is somewhat similar; at M's age I had no ASD diagnosis, but lots of "alphabet soup" and vague descriptions: "she has behavioral problems", "she's socially delayed", "she's bright but so difficult!", "she doesn't know how to relate to other children", "she doesn't play normally", and so forth. And of course, the commonly exclaimed, "What is WRONG with this child!?"

I don't know what would have happened had I been diagnosed earlier, but either way, there's definitely a problem with schools being far too homogenized. Kids are being horribly shortchanged by a system that is so intolerant of individual variation; it's like people are forgetting about the very existence of different learning styles and such.

MothersVox said...

Thanks Zilari, it's helpful to hear about your experience. It's not as though I've been actively seeking an ASD Dx for Sweet M, but I have also been completely open to it, if anyone had been willing to make it.

I guess she can't have "autism parent syndrome" if her worst symptoms are manifest at school. Perhaps it's autism school syndrome: the shortage of schools that are really willing to provide ASD kids a free and appropriate public education in the least restrictive environment.

Maddy said...

I'm catching up - what a pity that blogs are backwards - or is it?