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Breaking through to autism

Jason McElwain, the Rochester-area youth who drew national attention after scoring 20 points in his first varsity basketball game, is one face of autism.

Austin Matwijkow, 10, of Grand Island, represents another face, along with his fellow members of a weekly ice skating program.

On a recent morning, Austin -- dressed in his trademark Daniel Boone cap and wearing headphones to block out loud noises -- stepped up to get his skates in the front lobby of the Amherst Pepsi Center.

Nearby, one youth was rolling around on the floor. Another was yelling. And a third was totally distracted by the flash from a photographer's camera.

"Good morning, what's your name?" asked Sheila O'Brien, executive director of the Skating Association for the Blind and Handicapped.

"Austin," he replied, almost inaudibly.

What do you need? he was asked a couple times.

"Skates, please," Austin responded.

Staff members quickly praised him for putting the two words together.

And then Austin walked away, skates in hand, to participate in SABAH's newest program, for 17 young people from Summit Educational Resources who exhibit various forms of autism.

The new SABAH program is the most recent attempt to create specific programs for those with autism. The number of people with this developmental disorder has risen sharply in recent years, both here and across the country.

Autism covers a wide spectrum of delays and problems in language, social interaction and ability to form emotional attachments.

Many autistic children have a tough time speaking clearly or looking people in the eye. They're often overly sensitive to loud noise or bright lights. And people with autism often exhibit compulsive, ritualistic and disruptive behavior.

Autism affects approximately 1 million to 1.5 million people in the United States and roughly 4,000 in Western New York.

And it may be highly misunderstood, thanks in part to the public's fascination with high-functioning youths like Jason and savants such as Dustin Hoffman's character in "Rainman."

"People think everybody with autism knows that June 5, 1981, was a [Friday]," O'Brien said. "But this is a wide group, with so many different faces to it."

At the recent skating session, the 17 youths found different ways to express themselves.

Before picking up her skates, when she was asked what she needed, one girl used sign language to say "skates."

And one boy opened up his little billfold of photos, pointing to the photo that showed skates.

Each skater works one-on-one with an instructor, to develop dressing, skating and social skills. Following directions and appropriate interaction with others also are emphasized.

"We try to create an extremely structured environment and use the same step-by-step procedures each week," O'Brien said. "These kids can get overloaded with stimuli. They become over-anxious, and they can shut down. They thrive in a strict, consistent environment."

So it will be a challenge for these children with autism when they skate in front of thousands of people at the annual SABAH ice show, at 2 p.m. next Sunday in HSBC Arena. The autism group, which will skate a human pinwheel and other tricky maneuvers, has come a long way since last fall, when it was difficult to get them all on the ice and functioning.

"Never in the world did I think we'd get to this point," O'Brien said, as the group practiced one of its routines.

Autism has become a hot topic in the last 10 years, largely because the number of children diagnosed with the disorder has increased sharply.

When Ellen Spangenthal's daughter Laura, now 12, was diagnosed in 1996, experts claimed 1 in 2,500 children had autism. Ten years later, the figure is said to be 1 in 166.

Much of that increase is due to different diagnostic criteria, better tools to evaluate children and more publicity.

"My gut reaction is that it's a combination of better diagnostic practices and perhaps a spike in the number of kids," said Stephen R. Anderson, executive director of Summit Educational Resources in Amherst.

It may be difficult to explain autism simply, especially because it's an umbrella term that covers a wide spectrum of disabilities. But the hallmark of autism, Anderson said, is the difficulty in interacting and relating to other people.

"My daughter can add and subtract in French, but she cried for three hours without stopping Sunday night because she didn't feel well and couldn't explain the problem," Spangenthal said. "She can cook a meal, but she can't have a conversation with somebody about what she did over the weekend."

That's not what the public has seen from "J-Mac," the basketball player who traded quips with President Bush last week.

Or Alex Moshenko, the 12-year-old Clarence boy who testified at a recent health care round table discussion in front of Sen. Hillary Rodham Clinton.

Alex, who has Asperger Syndrome, part of the autism spectrum, lobbied for more research money for autism, telling Clinton that he was there to speak for children who can't.

Spangenthal, the communications director at Summit Educational Resources, welcomes all the attention on autism, even if it dwells largely on the highest functioning people with the disorder. "As a parent, I want as many people as possible to realize what some people [with autism] are capable of," she said. "I want everybody to look past the stereotype of autism and see each of them as an individual."

Spangenthal, from Williamsville, hopes the public understands the scope of that spectrum. "There are kids who are extremely challenged by this and need a lot of support," she said. "But there are also higher functioning kids [like Jason] who need to be encouraged to go to college or live on their own some day."

Every kid is different.

Austin, the 10-year-old with the Daniel Boone cap, is sensitive to loud noises. So Vito Gigante, his occupational therapist from Summit, devised something that fits under Austin's helmet to cover his ears. Austin's a pretty good little skater, and his mother, Doreen, says he loves the Thursday skating sessions. "Every Wednesday night, he tells me, 'Ice skating tomorrow,' " his mother said. "I'm not sure what he's going to do when it's over."

Doreen Matwijkow summed up both views about all the publicity over Jason McElwain. "I think it's a wonderful thing that it happened, and I'm glad people are talking about autism," she said, noting that people stopped discussing the topic once Doug Flutie, the father of an autistic boy, left Buffalo. "But it gives people a false impression of autism," she said of that magic moment on the basketball floor. "That doesn't happen every day."


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