It was a scary feeling, one day in school, when Trumbull teen Audrey Vogel looked up at her raised hand in class.
“I was watching my wrist twist and I tried to stop,” Audrey, now 17 and a senior at Trumbull High, said. “My brain was sending the message to stop but it wasn’t working.”
This was just one of a few “tics” Audrey began noticing in her early teen years. It wasn’t the only time she felt embarrassed and confused by what she was doing. Another time in class she was making a squeaking sound that her classmates and teacher thought was a broken radiator she was sitting near. As the maintenance man came to find the problem, she was too ashamed to admit it was something she was doing, because she didn’t quite understand it herself.
“Finally, my health teacher did a two-day unit on Tourette’s and a lightbulb went off,” Audrey said.
Audrey was diagnosed at 13 with Tourette syndrome, a neurological disorder that becomes evident in early childhood or adolescence. But her parents, Faith Bader-Vogel and David Vogel, believe it likely started much sooner and they just never got the diagnosis. She displayed what appeared to be “tics” as a young child, but a doctor told Audrey’s parents when she was 7 that she was fine.
“I think my first tic started at 3,” Audrey said. “I used to roll my eyes back and forth and my dad thought I was making a silly face and he called it ‘googly-eyes.’ We look back now and realize that was probably when it all started.”
It can be difficult to diagnose Tourette syndrome because tics can be caused by other related disorders and criteria for diagnosis include tics needing to be present for at least one year before the diagnosis.
“It was really hard in middle school,” Audrey said. “I often think that if I had been diagnosed at 7 it would have been a lot easier, because I think that kids hear ‘neurological disorder’ and they back off a bit. But when you are doing things they think you can control, it’s different.”
Her personal experiences and those of other children she’s since met and befriended who share her disorder have encouraged her to become a Tourette syndrome youth ambassador for the state of Connecticut. She was trained at 14 in Washington, D.C., and has since worked with school districts, children and many others to dispel stereotypes and raise awareness.
What many people may not know is that Tourette syndrome can be hereditary. Audrey’s cousin was also diagnosed, and going back in family history, she found what she thinks were other family members with undiagnosed Tourette’s.
“I call it a package deal disorder,” she said. “Usually someone with Tourette’s also has OCD, anxiety or ADHD or other ‘comorbid’ conditions.”
The stereotype of Tourette syndrome often seen in popular culture is one that really bothers Audrey. While a very small percentage of people with the disorder do yell out swear words, it’s not something that should be laughed at.
“Some people with Tourette’s are in wheelchairs or have to get brain surgery,” she said. “Some adults can’t hold down a job or even go to a grocery store.”
Audrey herself experiences pain regularly because of muscle clenching.
“It’s not a comedy act,” she said.
She also knows what it’s like to kicked out of libraries and grocery stores for some of her “tics.”
“It happens because of a lack of education, but it’s still illegal,” she said.
When not in school, Audrey tutors kids with disabilities and she is also part of Trumbull High School’s Gay-Straight Alliance group. She has plans for college, possibly the University of Hartford, and she wants to continue her outreach. She especially loves working with staff at other schools.
“Most importantly, I can tell them what it’s like to be that kid with Tourette’s,” she said. “They want to help but they don’t always know how.”