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‘I finally fit in’

Joseph Z. Sheppard (left), Ryan Huyton, Iris “Rainbow” Gray and Peter Cunnington at QV Café & Bakery.  - Danielle Pope
Joseph Z. Sheppard (left), Ryan Huyton, Iris “Rainbow” Gray and Peter Cunnington at QV Café & Bakery.
— image credit: Danielle Pope

Autism’s Own Conference asks Victoria for awareness

Sounds have always been distracting for Iris Gray. Not just loud trucks driving by or a gaggle of friends giggling at a table, but the buzz of fluorescent lighting, the tick-tock of a clock, the background hum of a computer monitor. Sometimes, it’s enough to make her leave a room — but then, this is normal.

It’s just as normal for Gray to visually memorize the placement of everything in a space, to feel a little clumsy wherever she goes, to have few, if any, friends — some people have trouble understanding her.

But it wasn’t until Gray was 36 that a frustrated partner broke up with her and pointed out how “socially awkward” she was, then referred her to some literature online. Gray was shocked — here, in a neat and tidy condition called Asperger’s Syndrome, Gray saw every aspect of herself blossom: the sensitivity, the missed social cues, the lifelong frustrations. For the first time, every trigger made sense.

“All my life, my parents were pulling their hair out thinking I was just doing all this stuff to get attention or to be a brat,” Gray says. “I always saw ‘autistic’ as the weird kid rocking in the corner, but Asperger’s — what was that? It was on the autism spectrum, but everything I read sounded like me. And, to be honest, finding out was a relief.”

Gray, who is better known as “Rainbow,” is now the organizer of the Victoria Asperger’s Syndrome Meetup Group, and will be speaking at Autism’s Own Conference — a UVic event featuring speakers and performers from Victoria’s autism community to celebrate World Autism Awareness Day on Tues., April 2. Gray never did tell her parents about her findings, but her older sister saw the diagnosis as an answer to a lot of questions.

“There’s no treatment, no real change, nothing I have to do, but suddenly I became part of a community,” says Gray. “Suddenly, I started meeting people who were just like me, and I didn’t feel so isolated anymore. Now, I don’t have to worry about being different. These people get me.”

While autism has received some hype from movies like Rain Man, so much stigma and misunderstanding surrounds the condition — and its close sibling Asperger’s — that people like Joseph Z. Sheppard have “come out” in an effort to break down the painful belief that people with the diagnosis are any less normal.

“The stigma around autism is so entrenched that it can, literally, make a difference to your paycheque — whether or not you have the capability,” says Sheppard, co-director of the Centre for Autism Research, Technology and Education (CARTE). “So, it’s a huge risk to be ‘out’ in the community and open about that, but it’s also what’s most needed.”

Sheppard was diagnosed with autism at age 36 — a diagnosis that made sense to the man who grew up with an often debilitating sense of ritualization, hyper-sensitivity and stereotypical physical ticks (like hand flapping) that made him believe he never quite belonged.

“I used to think I must have been a part of another species, like there were ‘the humans’ and then there was me,” Sheppard says of his early years. “I was OK with being alone for a long time. I had to rock myself to sleep every night, I had all the weird patterns that people think of when they hear the word autism, and those things aren’t practical as you grow up and try to raise a family.”

Though he lives with high-functioning autism, Sheppard is a father, an author, a graduate student, a volunteer coordinator at Uni 101 (a non-credit UVic program for people with educational barriers), the grad representative for the Society of Students with a Disability, a facilitator of Authors with Autism, the senior editor of Autism’s Own Journal and a participant on the planning committee of Emanu-El Synagogue. He also creates photographic art exhibits.

“This [conference] is a rare time when persons with autism gather together to create their own social spaces,” says Sheppard. “My purpose is to bring hope to adults with autism who have lost hope and share how I have gone from non-functioning to being able to live a full life as a contributing and respected member of society.”

Ryan Huyton found his own sense of self thanks to the meetup group that gathers twice a month at QV Café & Bakery.

“I’ve always felt like people just kind of put up with me, but here I finally fit in well, probably for the first time in my life,” says Huyton, 32, who was diagnosed with severe autism as a young child. “This group has made me more comfortable being around people in general. I used to not be very comfortable with my autism, but I’m OK with it now.”

Gray says the Asperger’s diagnosis will disappear in coming years, due to new understandings about the reality of the autism spectrum, and how more scientists are seeing variables in both.

“What’s unfortunate is that if you are a low-functioning Aspie, people don’t recognize your abilities. And if you are a high-functioning Aspie, people don’t recognize your challenges,” Gray says. “I’m great with words, but I can’t clean my apartment to save my life. We don’t want to be cured or fixed, just accepted and understood.” M

Attend the conference Tues., April 2, 6-9:30pm at UVic’s Harry Hickman Building (Room 105). More at: meetup.com/aspergers-209.

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