Earlier this month, we got an e-mail from a Newfoundland man named Tom Jackman who wondered if we would be interested in writing about the advisory committee to Autism Society Canada. the committee would be coming to Vancouver Nov. 25-28.
“Curious on whether you could do a story about the ASC Advisory committee!” he wrote.
Despite the oddly exclamatory nature of Jackman’s note, no two more boring words exist in the English language than “advisory” and “committee.” we replied we don’t usually write stories about committee meetings. was there a news angle?
Jackman wrote back, replying, well no, he guessed there wasn’t a news angle. he just thought it would be nice if we wrote about the committee.
Oh, and by the way, he wrote, all the members were adults with autism, including himself.
Jackman was right: the existence of a committee made up of adults with autism was not newsworthy. It was wondrous. Autism, that condition of impaired social interaction and communication, was being given a voice, its own. we phoned him.
“There are eight committee members on the board,” Jackman said, “and we advise Autism Society Canada on anything from housing to employment to advocacy. There are many adults with autism, but not a lot of them are speaking out.”
It is not easy to appreciate how hard it is for someone like him to do so. Jackman, who lives in St. John’s, and is the Newfoundland representative on the committee, was hesitant on the phone. Our conversation was halting, and the interview, difficult. he was more comfortable, he said, communicating by e-mail.
“I can talk, but sometimes I find it hard to express my ideas verbally.”
He was diagnosed relatively late in life with Asperger syndrome, a condition on the autism spectrum considered to be high-functioning. he displays many of the syndrome’s symptoms: social naivete, difficulty in initiating and maintaining relationships, a preoccupation with details while being unable to see the bigger picture, rule-bound behaviour dependent on routine. In high school, it made him an easy target for bullies. (Among the committee’s eight members, bullying was a common occurrence.)
“If you met me, you wouldn’t think I had problems, but I have trouble relating to others. If I go downtown to a bar, for instance, it’s hard for me to interact once I’m there. I might just stand there and not talk to anyone. and that creates problems for me, like when it comes to schooling.”
The committee was created in 2007, and like Jackman, the rest of its members are high-functioning and verbal, though that was not always the case for some of them.
“We have one individual,” said ASC executive director Kathleen Provost, “who was diagnosed at age three, and who was completely nonverbal. now, he’s 38 and he’s graduated from university.
“The committee was really started,” Provost said, “to have a proper perspective on autism issues for people who live the autism spectrum disorder every day. while advocates and parents of those with autism are always well-intentioned, you sometimes lose sight of the people who actually experience it.
“For example, we were talking about ‘curing’ autism in our meetings. but one person [on the committee] objected to that term and told me, ‘I’m not a disease.’ ”
Each provincial and territorial autism society, Provost said, was asked to provide a candidate for the advisory committee, though B.C., Alberta, Yukon and Prince Edward Island are still without representation. Michael Lewis, president of the Autism Society of B.C., said the society has tried several times to find a representative, “but it’s been a challenge.” Logistics and the nature of the disorder make it difficult, he said.
Bringing the committee to Vancouver, for example, is no easy task. Those with autism can find disruptions to their routines highly stressful. Two of the committee members will be accompanied by chaperones. and money for cash-strapped autism associations is always a concern. In past meetings, the farthest west the committee has gone is Toronto. Coming to Vancouver is a major endeavour.
The committee is coming here for a general meeting of the autism societies across Canada, where it will give its input.
And on Friday, the committee members head out to the University of B.C. for a symposium on autism at the university’s Centre for Inclusion & Citizenship.
There, they will speak up for themselves.
“We had a meeting with an autism researcher in Toronto last year,” Provost said, “and she said there are ‘significant chances’ that you will have a child demonstrating autism, suggesting that the rate of incidence could be increasing.
“One of our [committee] members replied, ‘I would prefer if you don’t present it that way as a negative.’”
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