Taking on Tourette's: Families Reveal Their Personal Struggles

Tourette

Nestled deep in the Finger Lakes region of New York State is a summer camp unlike any you've ever seen -- or heard.

Known as "Camp Tic-a-Palooza" -- a sly play on a disorder that has made the children here strangers in their own bodies -- the camp provides a safe haven from the judgment of the outside world. Within minutes, the summer stillness erupts in an odd symphony of grunts, squeaks and screams, accompanied by a grimace and a twitch or two.

Even the strangest behaviors seem common, because all of the campers suffer from Tourette syndrome, a lifelong neurobiological disorder characterized by involuntary vocal and motor symptoms called tics. The National Institutes of Health estimates that one in 1,000 American children suffers from the disorder.

The range of tics -- from constant eye-blinking, and finger tapping to barking and spitting -- even astonishes those with the disorder. "I never knew people could have tics like that. That's really new to me and that's really cool," said Sid, 10, whose own symptoms include sticking out his middle finger.

Amanda Fretwell traveled all the way from Alabama accompanied by her menagerie of vocal tics. "I'll hiss at people, I'll bark at people, I'll roar at people," she explained. Fretwell is one of the four teenagers profiled by ABC News, who documented their daily lives with Tourette in video diaries.

Normally, Fretwell struggles to suppress her tics, but at camp, surrounded by others who share her disorder, she feels liberated. "I haven't ticked this much in a long time," confessed Amanda. "I can tic and not worry about being self-conscious about it."

Like a string of firecrackers, Fretwell's screams set off a chain reaction of tics in the other children, especially 12-year-old Devon, who starts barking uncontrollably. Soon the place swells in a crescendo of ticcing children. One boy, who has Tourette himself, is annoyed by the noise and demands that the screaming stop. His intolerance doesn't sit well with the other children, who feel the sting of Tourette syndrome both physically and socially every day.

Coping With Tourette Isolation

Back in Alabama, Fretwell is isolated by the strangeness of her disorder. While her shrieks even surprise others with TS, she is humiliated by her cursing tic, a rare but well known symptom. Less than 15 percent of all patients have this form, according to the Tourette Syndrome Association. "Just because I have TS doesn't make me a freak. It's just something I do," said Fretwell.

Even when she is interviewing her sister, in one of Fretwell's video diary entries, her raw and even profane tic kicks in.

"Boobies, boobies, boobies" she exclaimed. According to Fretwell, the sexual imagery comes from her mind playing an instantaneous sort of six degrees game.

"There is a person wearing a short skirt in my class and I will think, 'Short skirt,' then, 'Lot of skin showing,' then I'll think 'Naked women,' then 'Whore' will come out," she explained.

According to Dr. Jonathan Mink, a child neurologist, people with socially inappropriate vocal tics are most likely to feel a stronger urge to say them in the worst situations.

"They know this is a setting like a church where I shouldn't do it. It's taboo here, but for some reason that's where it's the worst. 'I've got to do it,'" Mink said.

Fretwell's symptoms sometimes alienate her from her own family. "You cause a lot of problems. Money-wise, family-wise. You're a problem child," her sister said to her.

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