Great Article on Autism

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Story posted 2012.04.01 at 06:13 PM EDT


Joseph Sheppard has an IQ above 130. Ask him about his life or worldview and he’ll start drawing connections to cosmology and quantum mechanics. He’ll toss around names of great intellectuals — Nietzsche, Spinoza — as if they’re as culturally relevant as Justin Bieber.

It might not be obvious that Sheppard has a hard time with small tasks that most of us take for granted — washing dishes, sending packages, filling out online forms. Or that he finds it challenging to break out of routines, or to say something appropriate at meaningful moments.

Sheppard, 42, has high-functioning autism. He found out only about six years ago, but the diagnosis explained the odd patterns of behavior and speech that he’d struggled with throughout his life. And it gave him the impetus to reinvent himself as an autism advocate.

“I was invisible until I found my inner splendor,” he told me in one of many long, philosophical, reflective e-mails last week. “My ability to interpret and alter my throughput of judgments, feelings, memories, plans, facts, perceptions, etc., and imprint them all with what I chose to be and chose to do.

“What I choose to do is change the course of the future for persons with autism, because I believe in them and I believe, given the right support and environment, they will be a strong force in repairing the world.”

Just last week, U.S. health authorities announced that autism is more common than previously thought. About 1 in 88 children in the United States have an autism spectrum disorder, according to the report. Autism spectrum disorders are developmental conditions associated with impaired social communication and repetitive behaviors or fixated interests.

Diagnoses have risen 78% since 2000, partly because of greater awareness, and partly for reasons entirely unknown. Most medications don’t help, and while some find improvements with intense (and expensive) behavioral therapy, there is no cure .

Rates appear to be similar in adults. England’s National Health Service found in 2009 that about 1 in 100 adults are on the autism spectrum. People with more severe forms of autism may not be able to live independently or hold complex, social jobs. But those considered high-functioning can have a wide range of careers; you may even have a classmate or coworker with high-functioning autism who isn’t as vocal about it as Sheppard, or who never got a diagnosis.

Monday is World Autism Awareness Day, when organizations hold fundraising and awareness events to get the word out. Sheppard will be giving a talk at a local mental health facility about assisting people with autism in his idyllic Vancouver Island city of Victoria, British Columbia.

“The stigma environment is huge,” Sheppard told me in February over sushi at the University of Victoria’s cafeteria. “People can learn that you have autism and they can talk to you differently, they can treat you differently; you can feel like you’re less than human, your voice doesn’t matter.” Giving voice to people with autism Sheppard found out he had autism after a relative’s diagnosis spurred him to get tested himself. His own diagnosis inspired him to help others. But to become fully involved and do his own research, he needed to return to school.

“I did a psychology degree in some ways to heal myself, and to bring myself into a higher level of functioning,” he said. “I knew had a real yearning to contribute to my maximum potential.”

In 2007, he went back to the University of Victoria — where he’d studied philosophy in the 1990s — for a second bachelor’s degree. He’s on track to graduate in May and hopes to start graduate school in September.

Last year, one of Sheppard’s advisers, psychology professor Jim Tanaka, brought him on as co-director of the Centre for Autism Research, Technology and Education (CARTe), which launched officially in November. The center uses technology to help people with autism.

“We have this dream of making UVic the destination campus for people on the spectrum,” Tanaka said. He and Sheppard want to actively recruit the emerging generation of young adults with autism who are applying to universities and help them thrive on campus.

Already, Sheppard and Tanaka are working with university students and children in Victoria who’ve been diagnosed with autism.

Their center is currently testing computer games Tanaka and colleagues at the University of California, San Diego developed, targeted at kids on the autism spectrum who need help recognizing and interpreting facial expressions.

In a game called FaceMaze, kids are challenged to mimic circle-shaped cartoon characters’ facial expressions on a computer screen. Another program is in development for the iPad that will feature short videos of people a child knows making different expressions.

The philosophy behind these games, Tanaka said, is that “if you’re better at expressing emotions, you’re better at perceiving them.”

The games appear to have some benefits — the quality of the kids’ facial expressions is improving, Tanaka said — but the research is still preliminary, and it remains to be seen if it will have an effect on everyday interactions.

Games like these are tested on weekends in a program called Face Camp.


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Debbie Newell