Center challenges autism stigma

By Sarah Niebrugge

From the time Ryan Williams was told he would have to be institutionalized to his becoming a high-functioning college student, the Center for Autism Spectrum Disorders has made an everlasting influence on his life.

Williams, a 19-year-old freshman from Carbondale studying music performance at John A. Logan College, was diagnosed as autistic when he was two years old.

At the age of 3, Williams became one of the first students at the Center for Autism Spectrum Disorders, which is run by the university and located on campus. The CASD provides therapy, counseling and consultations to those with autism.

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Nationally, the number of American children with autism is increasing. The Centers for Disease Control and Prevention reported this spring one in 68 suffers from autism. Two years ago, the figure was one in 88.

Stephanie Horn, an instructor at the Rehabilitation Institute, said the center works with children from ages as young as 10 months to 18 years.

Horn said students over 18 come to the center for counseling work on group training and social skills, which can help them with their daily living skills. She said children with autism often lack basic skills needed for everyday life, such as calling to make a doctor’s appointment or going to the grocery store.

Horn said the recent revision of the Diagnostic and Statistical Manual of Mental Disorders has changed some of the definitions for autism and related disorders. For example, Asperger’s Syndrome and undiagnosed personality disorders are now found to fall in the autism spectrum.

Some people on the spectrum are high-functioning with no intellectual disabilities or language impairments, but do have deficiencies in social communication or restrictive and repetitive behaviors, she said. On the other side of the spectrum, some have more cognitive disabilities and significant language impairments.

Mary Williams, Ryan’s mother, said CASD continues to help her family with all of its questions, even after Ryan aged out of the programs.

“When he was diagnosed, they told me he would probably never talk,” Mary said.

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Ryan received speech and occupational therapy through the Carbondale School District, but Mary thought he needed more.

“I wanted more, so we had a lady from Archway that would come to the house… and do speech therapy,” Mary said. Archway is a childcare center in Carbondale.

Mary said his teacher at Archway told him of the program they were creating at SIU and began taking speech therapy there.

Dr. Anthony Cuvo, director of CASD, approached the Williams and said them he was interested in putting a group together for an autism institute, she said.

Jackie Wade, a speech-language pathologist from Archway, came to Ryan’s house to teach him how to speak correctly, Mary said.

“He never stopped talking since,” she said. “That’s what Jackie said, ‘We teach him to talk, he may never shut up.'”

Ryan attended Archway and special education classes at Unity Point School, until he transitioned into regular classes in kindergarten.

His daily life included many different habits and irritants, Mary said. Small things such as window wipers, strong perfume and people wearing eyeglasses would irritate Ryan, she said.

“I would just put headphones on him and glasses or I’d buy him an eye mask and say ‘If you don’t want to watch the wipers cover up your eyes. I need to drive,'” Mary said.

But he grew frustrated with the headphones and eyeglasses after a short time, she said.

“Either third or fourth grade, he came home one day and told me he didn’t want the sunglasses or the headphones anymore because he didn’t want to be different,” she said.

But times became tough for Ryan in high school, and classmates bullied him constantly.

“I just tried not to say anything. That way I wouldn’t get in trouble,” he said. “But my sister was really helping me out a lot.”

Ryan said his sister Kacie Williams, a sophomore at John A. Logan College, helped him reach out to his social worker who put the bullying to rest.

Mary said the CASD helped Ryan deal with all of his problems throughout this time.

“Even though he aged out of the program, they continued watching him all the way through high school,” Mary said. “Whenever we had issues we could always call here.”

She said the center has helped the family so much they continue to work with the program and talk to other parents about their experience.

The Williams are participating in the Color Fun Run organized by the Autism Society of Illinois’ Carbondale Chapter from 12:30 p.m. to 6 p.m. April 26 at Lew Hartzog Track and Field Complex. The run will be held to raise money for autism awareness.

Ryan is now on a music scholarship and will audition for it again at the end of April. He takes 14 credit hours this semester and is doing very well in class, Mary said.

Ryan said he does not know what young children with autism would do if they did not have the CASD.

“This center truly took me to a whole new level,” he said. “Now I’m high-functioning and without this program, I would not be where I am today.”

Sarah Niebrugge can be reached at [email protected] dailyegyptian.com, on Twitter at @SNiebrugge_DE or at 536-3311 ext. 268.

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