APRIL 30, 2006


'We don't need to be cured,'
say autistics

'Neurodiversity' activists use science
to fight against autism stereotypes

'Finding out a child has autistim is devastating for a family.' 'Autistic children who don't get treated before age six fall into the abyss.'

Michelle Dawson has been hearing these sorts of claims most of her life. But the 45-year-old autistic has had her fill of it — "It's not what the science says," she fumes.

She should know. The former mail carrier is a member of a leading autism research team at the University of Montreal, headed by respected psychiatrist Dr Laurent Mottron. Although she readily admits she has just a high school education, she's listed as a senior author on the team's latest study, on visuospatial peaks in autism, published online in April in Brain. She's also a leading light in the flourishing autistic rights movement, also known as the neurodiversity movement, which holds that autism isn't a disease but rather a different way of being human.

Ms Dawson says her autism has led her to get involved in some pretty "plodding stuff" — namely, science and law. The legal bit grew out of a discrimination dispute with her former employer, Canada Post, after she told them she was autistic — the case is now before a human rights tribunal. This in turn led her to intervene in a landmark 2004 autism Supreme Court case. BC parents of autistic children had won an appeal to force the province to pay for applied behaviour analysis (ABA) therapy; Ms Dawson wrote to the Supreme Court arguing there was no hard evidence supporting the intensive therapy. "I tried to intervene and I succeeded," says Ms Dawson. The higher court overturned the appeal; this pretty much made her public enemy number one of many parent groups, but she stands by her interference. "The case wasn't science or ethics-based."

The science came almost as an accident, after she met Dr Mottron after they'd both been featured in a documentary about autism. By most standards things got off to a rocky start, with Ms Dawson categorically dismissing much of the doctor's work as 'normalcentric.' "She said: 'You're completely wrong,'" Dr Mottron recalls with a chuckle. "She said: 'you always think you're the good ones and we're the bad ones.'"

Mutually intrigued, they decided to work together. That was two years ago, and since then they've co-authored six papers. Based on their recent analysis of IQ testing of autistics, presented in February at the annual meeting of the American Association for the Advancement of Science, they've begun to raise serious doubts over the established statistic that says 75% of autistics are mentally retarded. (For more on their research see "Rethinking autism, Part II," in our next issue — May 15)

Awareness about the neurodiversity movement exploded after some assertive Asperger's websites went live in the mid-90s. There are now many such sites of all stripes — angry, satirical, scientific — but most take as their central message that autistics don't need to be cured and in many cases they don't need treatment or therapy. They reject the division between high and low functioning autistics, and they absolutely don't want their lives run by 'neurotypicals.' Some of the more radical groups want total inclusion for all people who are neurologically diverse, from ADHD to Asperger's to Parkinson's.

Dr Mottron is very much in favour of the autistic rights movement, although he does see one danger: "What I fear is that some people with Asperger's syndrome will say 'We are the mutants, the ´┐Żbermenschen,' and it's really the opposite of what the movement is about."

One of the criticisms levelled at members of the neurodiversity movement is that they're 'high functioning' and so don't represent the views of low-functioning autistics.

"Some parents will say 'If you can express yourself you're not autistic,'" says Ms Dawson. "They say to me: 'My child can't live independently.' I tell them I couldn't either when I was six!"

Jeanette Holden, PhD, a researcher in the genetics of autism at Queen's University who has an autistic brother, thinks there's some merit to what the parents say. "These high functioning people are the ones saying 'Leave us alone - why do you want to change us, we're happy the way we are, there's nothing wrong with us,'" she says. "It's not what we do to cure it, it's about giving non-verbal, non-communicative autistic people a way to communicate, by whatever means possible - speaking, gesture, pictures, writing. And yes, that's changing them, but that's important."

"Autistics learn differently, we need different kinds of teaching," agrees Ms Dawson, although she doesn't accept that autistics don't communicate. She says they're simply not being understood or given access to the right tools.

Dr Holden's brother Jim miraculously went from being non-verbal to talking and typing on a computer in his fifties. "With most people, if you don't communicate before you're 10, they basically give up," she says. She rejects the idea that autistics have to get help, such as ABA, before age six. "I don't think it's true. Outcomes are probably better, but a family shouldn't be discouraged from pursuing whatever they can. My brother was non-verbal until he was 50, and it's amazing." Next issue: Part II looks at science's rethink of autism



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