Syndrome Can Cause Tics, Reading Problems, Phobias, Panic : Wider Incidence of Tourette Genetic Disorder Found

Tourette syndrome, a bizarre genetic disorder, may be far more widespread than once believed and may account for a significant portion of reading disabilities, panic attacks, phobias and other seemingly psychological ailments, two City of Hope researchers announced Thursday.

At its worst, Tourette is identified with violent, involuntary twitching and uncontrollable utterings of obscenities, and involuntary mimicking of the movements and words of others. It causes its often bright victims to become social outcasts who have trouble making friends, holding jobs or attending school.

In a study of 246 Tourette patients and 47 randomly chosen control patients, Drs. David E. Comings and Brenda Comings said they found evidence of widespread but less dramatic Tourette disorders--perhaps accounting for 10% to 30% of all conduct disorders, dyslexia, multiple phobias, panic attacks and dramatic mood swings.

Comings said he believes that Tourette sufferers are widely misdiagnosed by teachers, parents, doctors and therapists. He estimated that perhaps a million Americans suffer from the disorder, although only about 200,000 have been diagnosed.

Earlier Studies ‘Strengthened’

He said that the study, published in today’s American Journal of Human Genetics, “has really strengthened” previous studies linking the defective Tourette gene to many cases of hyperactivity and obsessive-compulsive behavior.

The study found that problems with short attention spans, difficulty understanding words, and seeing words and letters backwards are 10 times as common among Tourette sufferers as among the general population. And obsessive-compulsive behavior--repetitive counting, washing of hands and touching of objects--occurs in Tourette sufferers five times as often as in the normal population. Conduct problems are 17 times more common.

“If a psychologist or teacher or parent finds a child has difficulty concentrating, or behavior problems, like he or she can’t take no for an answer, Tourette is something they should look into,” Comings said.

Because Tourette syndrome is not widely understood, medical authorities say sufferers are often discriminated against or judged to be dangerous.

Last Saturday in Cincinnati, at a convention honoring National Tourette Syndrome Awareness Week, a man with the disorder was ejected from a table at a fast-food restaurant for cussing and throwing his arms into the air. The incident prompted some members of the Tourette Syndrome Assn. to call for a lawsuit against the restaurant.

Genetic studies indicate that the gene responsible for Tourette syndrome is surprisingly common, occurring in one in 83 people. In fact, among the 47 randomly selected control subjects studied by the Comingses, one turned out to be an undiagnosed Tourette sufferer.

The patient, a teen-age boy, had body and voice tics and problems with inappropriate sexual touching and exhibition--involuntary actions associated with Tourette.

“I simply cannot go talk to a school group or any other group of more than 10 people without somebody saying, ‘My gosh, you’re describing my Uncle Harry,’ ” Comings said.

He said he wants to attempt to isolate the defective gene so that a simple test can be performed to diagnose Tourette.

For three young Tourette sufferers who met in Comings’ office Thursday to discuss their problems, the new study is further confirmation of their long--and sometimes tragic--efforts to persuade schools, family and friends that they are not just “bad kids.”

Vila Jenkins, whose 16-year-old granddaughter Kimmie Cossel has had Tourette since she was 4 years old, said Kimmie’s mother would “wash her mouth out with soap” when, as a youngster, she swore loudly and repeatedly. “I’ve had people in stores say to me, ‘If that was my kid, I’d slap her in the mouth,’ ” Jenkins said. “People are the real problem, not these children.”

During the meeting with Comings, Kimmie repeatedly swore aloud, then glanced around sheepishly, as if to ask for understanding.

“If I’m concentrating on something, it doesn’t happen,” Kimmie said, grinning with pleasure once she saw that the group was not disturbed by her outbursts. “But if I’m not concentrating, then I really get going sometimes. Sometimes I say even worse words--you know the ones--or sometimes it will be something really hilarious.”

For Kimmie, a student at Eisenhower High School in Rialto, none of the numerous drugs used by doctors to quell the vocal and body tics has worked.

“I get to the point where I don’t want to live with it anymore, but I know as long as I’ve got hope I’ll keep going,” she said.

Ben Glinka, 13, a student at Sandberg Middle School in Glendora, has been more fortunate. A new medication, prescribed after he tried 10 other drugs, has helped control much of the involuntary movement that causes him to arch his back repeatedly.

But Ben, whose IQ is more than 130, still must attend the special classes at Sandberg for children with serious learning disabilities and often finds himself in detention hall after school for misbehavior brought on by the disorder.

“If Ben picks up a kid and carries him upside-down they give him detention for a week,” said his mother, Debbie. “They’ve been incredibly slow to understand that he is doing his best. I have to go in to the school every week to talk to them.”

The disorder has left Ben unable to concentrate. Friends have asked his mother whether he is deaf because he fails to respond to questions or requests.

“If I have two things to think about, I can’t handle them both,” Ben said. “Like, if I’m watching TV and my mom comes and asks me something, all I know about is the TV. I don’t hear anything else and I don’t know I’m ignoring someone.”

Finding out that Tourette was the cause of their troubles helped them understand the nightmare, the families said.

Shelly Melcer, whose son Steven Cole has been successfully treated with drugs and psychotherapy, watched her bright young son turn into a morose high school dropout whose inability to cope with Tourette led to a suicide attempt when he was 16.

Now enrolled in a junior college in Fullerton, Cole, 22, says he always acted impulsively, without considering whether his desires made sense. His behavior led to an arrest for stealing and to temper tantrums in which he always insisted he was in the right.

“His constant refrain was, ‘You people are all against me,’ ” said his mother.

Although Cole still suffers from facial and body tics that were evident Thursday, he said his psychotherapy, under Brenda Comings, “has helped me overcome my low self-esteem and self-worth.”

Adam Ward Seligman, a Los Angeles spokesman for the Tourette Syndrome Assn., who attended last week’s national convention, said a sense of humor has also helped many sufferers, like himself.

“The funniest line I heard was one woman say: ‘I can’t stand it, I’ve been here two hours and I’ve picked up eight new tics.’ . . . It’s sick humor, but it’s the way we survive.”