Panel explores living with autism

By Annie Gentile - ReminderNews
Willington - posted Tue., Nov. 13, 2012
A panel of young people on the autism spectrum who receive services from the FOCUS Center for Autism shared their personal experiences and answered questions. Pictured: (Back row, left to right) Jesse and volunteer Sharon Cable.  (Front row, left to right) Andrew, Emily, Alison, FOCUS Director Donna Swanson, and Alex. Photos by Annie Gentile.
A panel of young people on the autism spectrum who receive services from the FOCUS Center for Autism shared their personal experiences and answered questions. Pictured: (Back row, left to right) Jesse and volunteer Sharon Cable. (Front row, left to right) Andrew, Emily, Alison, FOCUS Director Donna Swanson, and Alex. Photos by Annie Gentile.

What is it like to live with an autism spectrum disorder? What do those diagnosed with autism feel are the positives about their disorder? What are their challenges?

On Saturday, Nov. 10, a panel of students, alumni and staff from the FOCUS Center for Autism in Canton, Conn., shared their experiences of growing up and living with autism and how it has impacted their lives at home, in school, and in their communities. The program was sponsored by the Regional Special Education Parent Teacher Organization - Success SEPTO - which serves families in Ashford, Mansfield, Stafford, Tolland and Willington.

“Anxiety is a primary aspect of being on the autism spectrum,” said Donna Swanson, who, with her husband, is co-founder of FOCUS. Swanson said children and adults diagnosed with an autism disorder have difficulty interacting with peers, reading social cues, managing their emotions, and getting and sustaining employment and relationships. “Their challenges don’t go away. It’s ongoing,” Swanson said.

Swanson said the center uses milieu therapy to provide a safe, supportive clinical environment that helps their students manage their anxiety and learn problem-solving and social skills. “We provide constant staff and peer feedback to help them learn to navigate their world and understand not just how they see themselves, but how others see them,” she said.

The panel consisted of Swanson, who shared information about autism spectrum disorders and FOCUS, parent and advocate Sharon Cable, and five FOCUS students and alumni who shared their unique experiences of living with autism. Autism affects about one in every 88 births, and the rate is growing at 10 to 17 percent a year, with boys being four times more likely to be affected than girls. There is no medical detection for the disorder, nor is there a cure.

“The only thing proven [about a cause of autism] is that there is a genetic link,” said Cable. “Environmental factors are also suspected, but everything else is still testing and speculation.”

Swanson concurred, adding that she felt strongly that the environment - be it food additives, microwaves, or other aspects of our ever-changing world - plays a role. “There are also theories about vaccines being a cause,” she said. “The important thing is to get more people the treatment they need.”

Andrew, 32, who was diagnosed with Asperger’s at 23, said he likes that his disorder enables him to have an “amazing sports, music and food memory,” but he dislikes that the disorder makes him constantly have to beg for acceptance from people in the “neuro-typical world.” His intense anxiety, he said, has made it difficult for him in the past to further his education and continues to unsettle him when it comes to moving out of his parents’ home.

Alex, 19, shared his painful personal story about how the fantasy world he had created as a result of his autism endangered his life. Only a year earlier, when he visited a zoo with his father and was left unattended for less than a minute, he tried to fulfill a fantasy of petting a tiger by jumping over the protective wall and reaching into the cage. The wild animal scratched him and bit off the tip of his finger, requiring surgery. He learned the hard way that he cannot act on his fantasies.

A question-and-answer session resulted in one person asking what parents can do to advocate for their special needs children when the administration part of the educational system pushes back due to costs and budget cuts.

“It helps if you have a parent support group,” said Cable. “Do your homework and figure out what your child needs ahead of time.”

Success SEPTO Vice President Brenda Stenglein agreed. “You’re the expert on your child. Never compare your kid with other kids. Approach your child’s teacher as a team member. It’s that team approach that makes all the difference,” she said.

SEPTO meets on the third Wednesday of each month at 6:30 p.m. at the Willington Public Library. Visit successsepto.org for more information and a list of monthly guest speakers.


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