Saturday, December 23, 2006

When not being diagnosed is just fine

There have been a few posts lately about self-diagnosis. Earlier this year, the issue of diagnosis became the subject of a petition, when demands that are never made of non-autistics were made of autistics. I'm a big fan of autistics getting formally diagnosed, but I have trouble with double standards. I posted a comment about this over on the TMoB board. I'm going to repeat a part of it here, to show another aspect of this issue that is usually overlooked. Sometimes, an autistic adult who doesn't have formal a diagnosis is not considered suspect in any way and is perfectly uncontroversial. The autism advocate featured in the excerpt below, David Vardy, was until recently Autism Society Canada's 1st Vice President, and continues to be a Director of ASC's Newfoundland affiliate.

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I also wonder why parents aren't questioned, when they fail to get a prompt diagnosis for their autistic child. A classic example is in the well-known "autism is worse than cancer" Senate testimony from then-ASC 1st Vice President David Vardy. At the time he testified, Mr Vardy's autistic son Adam was 31 years old. This means he was born in 1972, which is 11 years after I was born.

The gist of Mr Vardy's testimony is that having an autistic son is horrible, and has destroyed his and his family's life. And of course he testified that it would be better if autism were fatal.

According to his testimony, Mr Vardy didn't notice much different about his autistic son at all, until he was 15. Then, he testifies (this would have happened in 1987, seven years after autism first appeared in the DSM, and the year the DSMIII-R came out),

We had no choice but to have him taken to a hospital, where he was admitted and diagnosed incorrectly with bipolar disorder. That was because our medical system did not have the capacity to diagnose autism at the time. It is not much better today.

Mr Vardy goes on to recount multiple wrong diagnoses, and adds,

Medical practitioners regarded Adam as a puzzle. Psychiatrists did not consider autism to be a possible diagnosis.

Then Mr Vardy diagnoses his own son:

Up to this point in time, we had not received a concrete diagnosis for Adam. After his hospitalization, it was suggested by an adolescent counsellor that a mild variety of autism could be the problem. We investigated the literature in this area. We read the medical journals, and we came to the conclusion that autism was the problem. The psychiatrist at the time did not concur with this.

And:

Other professionals, such as a speech language pathologist, did [concur that Adam was autistic]. We reached a point where Adam became so reluctant to see doctors that we never did get a formal diagnosis.

So Mr Vardy's son Adam is an undiagnosed autistic. Neither an adolescent counsellor nor an SLP is qualified to diagnose autism.

Yet Mr Vardy was 1st Vice President of ASC, and was considered an autism expert by the Canadian Senate. Not only did he not prove his son was autistic, he could not do this.

Oddly, there was no outcry from the powerful and influential leaders of the Canadian "autism community".

You can imagine what would happen if this story was told from Adam Vardy's point of view, not David Vardy's. Adam becomes "self-diagnosed", there is certainty that he is an imposter and fraud (and surely a malingerer) because his parents did not notice anything when he was young, professionals never considered or actually denied that he was autistic, etc.

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2 comments:

Tera said...

You can imagine what would happen if this story was told from Adam Vardy's point of view, not David Vardy's. Adam becomes "self-diagnosed", there is certainty that he is an imposter and fraud (and surely a malingerer) because his parents did not notice anything when he was young, professionals never considered or actually denied that he was autistic, etc.

I suspect that it also depends on what Adam was arguing. If he said that autism was indeed terrible, that he wanted to be cured, and that ABA was a medically necessary treatment, I don't think most of ASC's "autism advocates" would care if he were self-diagnosed or not.

Michelle Dawson said...

Tera wrote, "I suspect that it also depends on what Adam was arguing."

Yeah, I suspect that too.

The great number and variety of (anti-scientific) expedient liberties autism advocates have taken with diagnosis and diagnostic criteria would be a good subject for a book (maybe in two volumes?).