Seeing the face behind the tics
Published 6:00 am Saturday, May 22, 2004
Tourette Syndrome educator helps the public look beyond the stereotypes.
Sometimes half the battle is understanding what you face.
Children with Tourette Syndrome, a neurological disorder characterized by involuntary motor and vocal tics, are often misdiagnosed for years.
TS sufferers can be misinterpreted as “troublemakers” who want to draw attention to themselves. But that’s the last thing they want, explains islander Bernadette Witty.
Witty knows; she was not diagnosed with TS until age 32.
Now, as president of the Washington State Chapter of the national Tourette Syndrome Association, Witty is educating teachers, parents, patients and the public about the disorder.
“We would like people to ignore the tics and treat (those with TS) as normal people. Try to look at the person, instead of the physical sounds and movements,” Witty said. “Once people know what (TS) is, they’re ok.”
According to the National Institutes of Health, an estimated 100,000 Americans suffer from full-blown TS. Some genetic studies suggest that the figure may be as high as one in 200 people if those with chronic multiple tics or transient childhood tics are included in the count.
Symptoms typically appear in childhood but may wax or wane over a person’s lifetime. Although most people have mild to medium symptoms, TS sufferers are stigmatized by media portrayals of the most severe symptoms –found in less than 15 percent of the cases – where a person may utter inappropriate words or profanity.
TS is frequently accompanied by complicating disorders such as obsessive-compulsive behaviors, attention deficit issues and learning disabilities.
There is no cure for TS, but there are many treatment options, including medication, therapy and coping strategies.
At a recent medical conference sponsored by TSA’s Washington chapter, 140 adults and 40 children learned about the latest medical findings and research, and asked their own questions about TS.
Such events are also opportunities for TS sufferers and their families to meet and talk to each other. One popular conference activity has kids interview each other about their TS.
“Often kids will open up and talk to peers,” Witty said. “There’s so much internalization of thoughts and concerns and worries that they don’t tell parents.”
One of the chapter’s most effective programs, Witty says, is the Youth Awareness Disabilities Assemblies. With volunteers from other disability organizations such as the Multiple Sclerosis Society and the American Parkinson’s Disability Association, the group makes five visits a school year for two days of learning activities.
Children may toss beanbags wearing obstructed vision goggles, walk a low beam with a weight on one leg, or have a relay race while performing various motor and vocal tics.
“At the end of an assembly…it is clear from many of the questions that (the students) have really gained an insight into what it is like living with the various disabilities represented.”
For specific cases, the chapter has a trained school advocate who meets with teachers and parents to create an individual education plan.
Witty says simple accommodations such as seating a child at the side or back of the room or longer testing times can help relieve stress that makes the TS symptoms worse.
“Once you do that, it can make the lives of the child, teacher and class so much better,” she said.
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A social group for adults with TS meets first Thursdays at the Olive Way Starbucks in Seattle. Information: www.tourette.net/wa.
