Autism Awareness Day shines a light on misunderstood disorder


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SALT LAKE CITY — It's a special day for families who have children with autism. It's the day the world says, "We're listening."

Buildings across the world will be lit up in blue Tuesday to mark Autism Awareness Day, bringing light to a disease that affects one in every 88 children. It also has no medical detection or cure.

Last week, a positive example of autism awareness went viral when a Utah Chili's restaurant made a little girl's day by replacing her "broken" cheeseburger that was cut in half with an intact one. The incident and people's reaction to it are good signs that people are learning more about autism — and families are grateful.

But they're also cautiously optimistic for the future; they still say more work needs to be done.

'Autism acceptance'

President of Autism Council of Utah Cheryl Smith says putting money into awareness campaigns is helpful.

"It's not just autism awareness. It's autism acceptance," she said, "not only noticing it but accepting it's in their brain and they can't help it."

Smith calls autism an "invisible disability."

"Our kids, as you can see, are just beautiful. They don't have any outward disabilities," she said, "so a lot of times people just think they're acting out, but it's really a brain disorder."

Smith cited the cheeseburger incident as a prime example: "The little girl who wouldn't eat her hamburger because it was cut? She's not being bratty. She really can't get over that."

Deseret News:

The Centers for Disease Control and Prevention estimates nearly 90 children will be diagnosed with the disorder before age 8, but according to Smith, the numbers are greater locally.

"Utah has one in 47 kids who have autism," she said.

Facing diagnosis, seeking treatment

Like the symbol for autism awareness, the science behind autism remains a puzzle: There's no conclusive cause and no conclusive cure.

Jessica Andrews' 5-year-old son, Jonah, was diagnosed with an autism spectrum disorder when he was just 3. Facing that diagnosis was overwhelming.

"My first thought was, 'What am I going to do now? Because he also has medical issues that we deal with," Andrews said. "At that time it was just unthinkable, unimaginable for me of how I was going to be able to keep this family afloat with a child having so many different things going on."

Jonah has come a long way, but there's so much work ahead.

"Some things just don't click for Jonah. He plays off socially very well but he'll ask a lot of questions," she said. "He'll repeat himself a lot."

Andrews is advocating that more autism treatment services be covered by insurance.

What is autism?
In the words of one mom:
"Autism is a brain disorder that primarily affects communication, social skills and behaviors. Sometimes kids with autism also have repetitive language (called echolalia); or hand flapping, twirling or rocking. Many people with autism have little or no eye contact and seem to be uninterested in relationships. The autism spectrum is huge! It affects everybody differently. I heard that "once you've met a person with autism, you've met ONE person with autism." Source: Autism Council of Utah

"They're coming out of our pockets, and that limits the type of therapies we can do with our children."

Amber Foster of Support Coordination Services of Utah agrees.

"There needs to be more services for these kids with autism," she said. "It's very difficult for them because these kids are so demanding all the time. You can't leave them unsupervised. They don't understand danger."

Awareness brings change

Brooks Donaldson can be seen as a "success story." He was diagnosed with Aspergers, an austism spectrum disorder, when he was 9 years old. Soon, he will graduate from Westminster College. A year ago, he started the Exceptional Students Club At Westminster to do his part for autism awareness.

"I just noticed a lack of disability awareness around campuses and all over," he said. "I thought it would be helpful to start educating and promoting awareness and acceptance of people with disabilities on campus, just so they have a place to go so they can feel comfortable and accepted on campus."

Donaldson says he believes his campaign and others like it have made a difference.

"I feel like there's been more understanding, and I've been feeling more comfortable being on campus, just being able to walk without being judged," he said.

Tuesday night at 7 p.m., Converse Hall at Westminster College will be lit in blue, joining other structures across the country, like the Empire State Building, also lit in blue.

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Nkoyo Iyamba and Lindsay Maxfield

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