The information below comes from District 113.
recent graduate Ariel Small is heading to the University of Pennsylvania for college. While he plans to study engineering, he’s also got other goals for life after high school.
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“While I do really like engineering, I’m always going to pursue advocating for Tourette’s.”
When Small was six-years-old, his parents got concerned when they noticed odd facial movements that he couldn’t seem to control. He was soon diagnosed with Tourette Syndrome, a neurobiological disorder that affects an estimated 200,000 people in the United States.
"When I was younger, I completely neglected Tourette’s,” Small remembered. "I didn’t really know myself that well and I didn’t want to handle the struggle. I had so many bad experiences.”
That all changed when Small arrived at Highland Park High School and decided he wanted to face the challenges and misconceptions of his disorder head on.
One of the disabling aspects of Tourette’s is the tics that disrupt daily function, but Small found that another was the constant need to prove that his symptoms were real – and that he wasn’t faking them just to be disruptive.
“I realized that something had to be done about it,” he said. “I wanted to stop the way people think about Tourette’s Syndrome.”
Small became an Illinois Youth Ambassador for the Tourette Syndrome Association (TSA), he also started filming a documentary about his life.
“Initially, my mom hired a filmmaker to film me presenting at different schools, then it kind of snowballed,” he said adding that he started being filmed at home with his brothers and at football practice. “It really became a huge project.”
Small teamed up with Creative News Group in association with WNET New York Public Media during the process. The documentary was produced by Emmy Award-winning NBC News veteran John Block. It was also narrated by Actor and bestselling author Michael J. Fox, who raises funds and awareness for Parkinson’s disease research.
“It’s weird for me to see myself on TV sometimes,” Small joked.
The documentary followed Small’s journey to overcome the obstacles and misconceptions surrounding Tourette’s, “The hardest part of high school for me has been finding the balance of accepting Tourette’s and also living past it,” he said. “I think a lot of times kids don’t want to be singled out but they also really need to address their issue.”
In the documentary he met with James Durbin, an American Idol Finalist, who was brutally-bullied at school for having Tourette’s.
“Meeting James Durbin was amazing,” Small recalled. “I didn’t really know what he’d be like at first. He was the most genuine honest guy; he was willing to talk about anything and all. He opened up about his entire life and history.”
Small doesn’t look at his disorder as a “curse” but instead as a “blessing" and claimed disorders like Tourette’s are really just like any other obstacle in life.