Saturday, June 21, 2008

Canadian revolution in mental health understanding ...

This Canadian Globe and Mail series focuses on common disorders with onset in adolescence and adulthood, but it's entirely relevant to cognitive disorders that present in childhood and at birth.
Gordon's Notes: An astounding series on mental health disorders

... astounded by their special series on mental health: Breakdown: Canada's Mental Health Crisis.

The title is misleading, there's nothing particularly Canadian about the stories. The portrayal of schizophrenia (let us honor the Bigelow family) and David Golbloom's review of the mission of the Mental Health Commission of Canada are among the best writings on mental health I've seen anywhere...

... Canada evolved the endless commission as an alternative to civil war. So the Mental Health commission may have an impact both in Canada and the US...
Canada is often 5-10 years more advanced than the US, so this is a strong indicator of cultural change that's likely to occur here -- sooner with Obama, later with McCain, but still on the way.

Thursday, June 05, 2008

Autism spectrum disorders as disability vs different ability – a recent debate

Writing in the Britannica blog,  John Pitney replies to a Stanley Fish article …

Stanley Fish and Autism –John Pitney - Britannica Blog

In an entry on his New York Times blog, Stanley Fish wonders whether autism is just another “difference” like race or sexual orientation….

… Fish hints that autism may be a superior form of existence.  “A genetic difference is often adaptive and can be regarded as an advance in the evolutionary process…

… Apparently Fish gets his knowledge of autism from another movie, Rain Man.  (If you haven’t seen the picture, it portrays Dustin Hoffman as an autistic adult who can perform amazing feats of memory.) In real life, few autistic people have savant skills.  Among those who do, a large portion have severe problems with other areas of life such as toilet training.  It’s ridiculous to compare them to the X-Men.

Fish takes his cue from the “neurodiversity” movement, which questions whether we should see autism as a disease or disability.   Like adherents of this movement, he fails to make the crucial distinction between autistic people and the condition itself…

… That is reckless.  Autism is not a personality quirk.  It is a complicated neurological disorder that involves the entire brain.  It affects speech, language, body movement, memory, and emotion.  It comes in many varieties and degrees of severity, but even the “mildest” forms are life-shaping disasters. 

Fish might still object that the “disorder” label stigmatizes something that is merely a “difference.”  To say that autism is just a difference is like saying lung cancer is just a different form of cell growth and that painful wheezing is just a different form of respiration.

In his play Professional Foul, Tom Stoppard writes that “you can persuade a man to believe almost anything, provided he is clever enough.”  Stanley Fish is a very clever man, and other clever people will derive fleeting amusement from his comparison of autism to mutant superpowers.  He will now move on, and apply his drive-by cleverness to other topics. 

Meanwhile, he has done real harm by trivializing the struggles of autistic people, including my little boy.

During the 1970s there was a populist “revolt” against psychiatry. Schizophrenics weren’t mentally ill, the rebels claimed, they simply “thought differently”. They should not be strongly encouraged, much less forced, to seek treatment.

To put it mildly, this did great harm. The dark side of this meme persists in Scientology today.

Fish is so wrong on so many levels, not the least of which is a profound ignorance of how natural selection works. I think, though, as with the “don’t treat schizophrenia” movement, there’s an element of truth among the mire.

I’ve written previously about the legitimate scientific foundations for thinking about diverse minds, the fuzziness of our diagnostic categories, the astonishing prevalence of major genetic defects in seemingly neurotypical brains, and (elsewhere) about visualizing neurodiversity.

So for me Fish is mostly wrong, and Pitney is mostly right. In our world and in most conceivable worlds, the diverse disorders we crudely categorize as “autism” are severely disabling a source of sorrow and suffering for autistic person and their families. And yet, even so, there are people (electrical engineers, software engineers, etc) with traits that are highly adaptive in the modern world, even when these traits overlap to a certain extent with high IQ Asperger’s, which in turn overlaps with the most functional end of the so-called-autism spectrum disorder.

If we could “remove the autism” entirely from our children, they would be different people. Lung cancer, to use Pitney’s example, is not a part of a person. Heck, lungs aren’t a part of a person – not really. Aspects of a mind are the person, including disabling aspects. It’s not so easy to separate autistic persons from their disorder.

So if I had magical powers I’d “fix” some of the afflictions my children have – no doubt – but I would not want them to be different people. Some of the traits would have to remain – parts of the people I love – things they would not abandon lest they lose themselves.