It seems the first thing most people associate with Tourette Syndrome is the compulsion to use bad language. While it is true that this is a symptom for some Tourette Syndrome patients, for the vast majority, it is not. And it is only one small part of the syndrome. Tourette Syndrome is primarily defined by motor and vocal tics, which are involuntary repetitive movements and vocalizations. According to the Centers for Disease Control, about one in 162 children in the U.S. has Tourette Syndrome, including teen singer Billie Eilish.
Kim Sambuchi, of East Amherst, NY, has a daughter named Olivia who went through a phase of swearing in her teen years, but that symptom has subsided for the now 20-year-old college student. She still has tics when she gets nervous, reports Sambuchi. Examples of common Tourette Syndrome tics include eye blinking, face twitching, and throat clearing. “It’s like having an itch, until you scratch it, it’s just going to build up,” explains Sambuchi. “There is great anxiety and discomfort until they let it out,” she says.
Tourette Syndrome is usually diagnosed in early childhood, around age 5 or 6, and symptoms typically peak in the preteen years (ages 9-12), when tics are at their most severe, says David G. Lichter, MD, clinical professor of neurology in the Jacobs School of Medicine at the University at Buffalo. “This is a waxing and waning disorder,” he says, describing how tics come and go in phases and change over time.
In addition to tics, according to the CDC, six out of seven kids with Tourette Syndrome also have another mental, behavioral, or developmental disorder. ADHD, OCD and anxiety are the most common. As many as half of Tourette Syndrome patients have at least one of these three disorders, says Jonathan W. Mink, MD, Chief of Child Neurology at University of Rochester Medical Center.
We’ve spoken to area experts to try to set the record straight about common myths and misperceptions about kids with Tourette Syndrome, and to learn the facts.
Myth #1: Swearing
Fact: The technical term for this symptom is coprolalia, the involuntary outburst of obscene words. Fewer than 10% of patients swear as a symptom of Tourette Syndrome. “Only a small percentage get the cursing tics,” says Susan Conners, President of Tourette Association of Greater New York State in Buffalo. She explains, “Most people will inhibit the thoughts that come into their heads. But Tourette’s kids will say what comes into their head.” Dr. Lichter further explains that Tourette Syndrome is a disorder of inhibition, meaning that kids with Tourette Syndrome are often not being able to inhibit their movements or utterances.
Myth #2: Behavioral Disorder
Fact: “It’s a neurological movement disorder,” says Conners, speaking of students who make unwanted movements in class and are admonished for misbehaviors. “Sometimes tics are misinterpreted as misbehavior,” says Dr. Lichter. This may cause teachers to discipline children inappropriately. By example, Conners recalls a 7th grader who was suspended 16 times by November. “They’re looked at as bad kids,” she says, because they often can’t sit still and don’t always comply with directions.
Myth #3: Kids are acting this way on purpose
Fact: Some tics can look purposeful, but it’s involuntary behavior. Dr. Mink recommends trying to educate the people around the child that these are not intentional behaviors. Sue Conners and the Tourette Association of Greater New York State work to help teachers understand that kids are not intentionally misbehaving. “These kids don’t want attention called to themselves. They get too much unwanted attention as it is,” says Conners.
Myth #4: Special Education
Fact: “Most Tourette Syndrome kids have completely normal IQ,” says Dr. Lichter. While learning disabilities are common in Tourette Syndrome patients, most students can manage the workload as well as neuro-typical students. As a result, many kids with Tourette Syndrome attend mainstream schools. “Sometimes the ADHD and the OCD interfere more in an educational environment than the tics,” says Dr. Lichter.
“Tourette Syndrome is regarded in New York State as a disability,” says Dr. Lichter. As a result, schools may provide the following accommodations to Tourette’s students:
- Time-out periods to let out tics in private
- Extra time with tests; tics can slow children down with test-taking
- Taking tests in a separate room
“There’s no quick fix for it,” says Sambuchi of treatments for Tourette Syndrome. However, treatments are available. Comprehensive Behavioral Intervention for Tics, or CBIT, has been shown in studies to be as effective as some medications, says Dr. Lichter. This technique trains patients to be more aware of their tics, and retrains them to try a competing behavior when they feel the urge to tic.
Support from doctors, family, and teachers is very important, says Dr. Lichter. Experts agree it’s important to have someone explain Tourette Syndrome to family members, teachers, and peers, not only about the tics but about concurrent disorders. Dr. Mink suggests teaching children to explain Tourette Syndrome to the people they interact with. “Help the child find a way to explain.” If the child can explain the tics of Tourette Syndrome in his own words to people, it can create understanding and empathy. “That often makes a huge difference,” says Dr. Mink.
Suzanne Koup-Larsen is a freelance writer based in suburban Philadelphia. Her work has been published in FamilyFun, National Geographic Traveler, the Philadelphia Inquirer, as well as New York Parenting, Pittsburgh Parent, Sacramento Parent, NJ Family, and Washington Parent.