Teens with Tourette syndrome learn how to be their own advocates

Confidence and leadership are important life skills for anyone, but they’re especially critical for those with Tourette syndrome. It was the focus of a four-day academy hosted by the New Jersey Center for Tourette syndrome.

“When you don’t know anyone else with Tourette’s or these other disorders or disabilities, it’s very hard and it gets very lonely. And so here it’s awesome because you get to meet 20, 30 other people with Tourette’s, that some of these students have never seen anybody else with Tourette’s before,” said Andrew Friedrich, head coach of NJCTS Academy.

But it’s not just about making friends. They’re learning about their disorder and the comorbidities that often come with it, like OCD, ADHD, anxiety and depression, says University of Pennsylvania neurologist Michael Rubenstein.

“The outward signs of Tourette’s are the tics that people see, but very often they overlook the other things, and the other things can more disabling, especially for children in school who have difficulty with focus and attention,” said Rubenstein.

“While those [tics] can be annoying, they’re not the worst parts. It’s the comorbidities that come with it, the OCD, the obsessive thoughts, the sensory issues, not liking certain materials, worrying about germs, or worrying about school or stressors, things like that. And it’s the combinations of all of them and how they’re often misunderstood, or not treated properly, is the main difficulty behind Tourette’s and the umbrella of disorders that come with it,” Friedrich said.

The students met with a range of health care professionals — neurologists, geneticists, social workers and psychologists, like Dr. Rob Zambrano, who addressed obsessive compulsive disorder.

“It could be thoughts about the fear of germs or contamination,” said Rob Zambrano, a psychologist with Stress and Anxiety Services of New Jersey. “And so often, when you talk to them about it, most clients with OCD can acknowledge, I know this probably isn’t going to kill me, I know these thoughts don’t make sense. But it makes me so uncomfortable, it makes me so anxious, that I just want to go wash my hands anyway because it makes the bad feeling go away. And so the therapy is getting them to touch that thing that makes them uncomfortable and then not give in to the urge to wash their hands. Their brains get to see, oh nothing bad actually does happen.”

“I wanted somewhere to be able to be myself, and meet new people, and learn new things about my diagnosis and to have something that helps me grow,” said participant Tara Barr.

“The more people understand Tourette syndrome, the less we’ll feel embarrassed about our tics in public,” said participant Eric Baldwin. “If no one understands what you’re doing, I have people come up to me asking if I’m OK because it really does look weird. It’s just uncomfortable.”

The goal is for the young people to bring what they’ve learned to their friends with Tourette’s and to be able to better advocate for themselves within their communities.

We’re in this together
For a better-informed future. Support our nonprofit newsroom.
Donate to NJ Spotlight