'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.
LEGAL
EAGLE
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)
US
vs THEM
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 �bermenschen,'
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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