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Autism Awareness

Local organizations help families put the pieces together

April 10, 2012
By JENNIFER SHIMA Tribune Chronicle correspondent , Tribune Chronicle | TribToday.com

Autism diagnoses have increased 1,148 percent since 1987, making autism the fastest growing developmental disability in the United States, according to the Autism Society.

The most recent federal estimate reports that the number of children who are diagnosed with autism has reached a staggering one in 88.

"When I started (20 years ago), one in 10,000 children were diagnosed with autism, then really quickly it went to one in 700 and dropped rapidly from there," said Marilyn Fielding, program coordinator for the Potential Development Program School of Autism in Youngstown.

Today, 23 percent of children are diagnosed with autism.

"It's an epidemic," said Georgia Backus, executive director at the Rich Center for Autism at Youngstown State University. "It's confounding that we could go from one in 10,000 in 1995 to one in 88 in 2012."

"[Autism] is a developmental disability that affects communication, behavior and social skills," said Fielding. "There's no medical test for autism, and it's entirely symptomatic."

Fact Box

Signs and symptoms of autism

No big smiles or other warm, joyful expressions by six months

No back-and-forth sharing of sounds and smiles by nine months

No babbling by 12 months

No back-and-forth gestures like pointing, showing, reaching or waving by 12 months

No words by 16 months

No two-word meaningful phrases (without imitating or repeating) by 24 months

Any loss of speech, babbling, or social skills at any age

SOURCE: www.autismspeaks.org

Autism is a spectrum disorder, meaning that every person who is diagnosed is unique, with varying abilities and levels of development.

"People with autism don't communicate early in life or at all," Fielding said. "They don't look at you a lot, they seem preoccupied when you talk to them, and they don't interact well with other kids or adults. They learn visually, and they're very literal. They don't get jokes or satire. Like if you were to say I 'spilled the beans,' they would think that you actually spilled beans. People with autism are also susceptible to anxiety with changes in routine or when they think that they did something wrong."

There is no known cause and no cure.

"They're all fishing," said Shellie Duchek, development officer at the Potential Development Program School of Autism, "they all want a reason, and we can't pinpoint one."

Although little is known about what causes autism, understanding it and identifying signs of autism early can make a world of difference for parents.

Paul Garchar, executive director of the Potential Development Program School of Autism, believes that "the earlier your child is diagnosed, the earlier they get into a structured program, and the earlier that you can find out what the triggers of anxiety are, the better off your child is going to be."

According to the Autism Society, the lifetime cost of caring for a person with autism is approximately $3.2 million, but these costs can be reduced by nearly 75 percent with early identification and care.

"Having a child with autism places a lot of stress on a marriage, on your finances, on pretty much every aspect of your life," said Melissa Jupp, preschool program coordinator at the Potential Development School of Autism. "You kind of have to schedule your life around where and when [your child] is going to have anxiety about something. [Parents] focus on, 'how can I get through today with the least amount of anxiety for my child.'"

Understanding autism is not only important for parents, it's important for the community.

In spite of the growing prevalence of the disorder, autism awareness is still lacking, said Backus. "I think [the community] is more aware of the word, but I'm not sure they're aware of the devastating effects that families of autistic children face.

"Ninety percent of autistic people live below the poverty level," Backus said. "We've had calls from a young woman (with an autism spectrum disorder) who graduated with a 4.0 from Kent State and can't find a job because the social aspects are so difficult for her. We'd like to help the community understand that you may have the most valuable employee, but it's just going to take a little while to train that social piece."

April is Autism Awareness Month and to kick it off, several autism-support agencies and groups came together recently to raise awareness with Youngstown's first Walk Now for Autism Speaks.

"It was a fabulous collaborative effort among agencies that serve the population," Backus said. "We were able, as a number of agencies, and with the support of Autism Speaks, to make it happen."

The money raised at this event will benefit research and awareness efforts by Autism Speaks, a powerful autism advocacy group.

Community support and autism awareness are important to families and people living with autism.

"That's what the community doesn't see," said Backus. "There is no one in my mind more powerful, or who deserves more credit, than the parent of a child with autism."

 
 

 

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