Many myths and mysteries surround Tourette syndrome — everything from how the disorder manifests to how it’s treated to what causes it in the first place. Past research has found that even physicians and psychologists hold bogus beliefs about the disorder.
Described in 1884 by French physician Georges Gilles de la Tourette, Tourette syndrome is a neurobiological disorder characterized by sudden involuntary movements and vocal outbursts or tics.
It affects about 6 in 1,000 individuals, according to Douglas W. Woods, PhD, a clinical psychologist and researcher who specializes in behavior therapy for kids and adults with Tourette syndrome.
Individuals may experience simple motor tics, such as repetitive eye blinking, nose twitching or head jerking. They also may experience complex tics, such as touching, tapping and rubbing. Vocal tics may include sniffing, grunting and throat clearing.
Tics can cause a whole host of problems, such as numbness, repetitive strain injuries, and even paralysis, said Woods, also head of the department of psychology at Texas A&M University.
It’s common for people with Tourette syndrome to have other disorders, including obsessive-compulsive disorder and attention deficit-hyperactivity disorder, he said. The prevalence of ADHD in kids with Tourette syndrome may be as high as 60 to 70 percent.
Tics typically start in childhood, peak between 10 and 12 years old and decrease by early adulthood. But this isn’t the case for everyone. According to this review: “By late adolescence or young adulthood, over one third of TS patients are virtually tic-free, less than half have minimal to mild tics, and less than a quarter have persistently moderate to severe tics.”
Below, we clear up the more common misconceptions about Tourette syndrome.
1. Myth: Everyone with Tourette syndrome blurts out obscenities.
Fact: Many people believe that swearing is a defining symptom of Tourette syndrome. And this makes sense: It’s probably the most common symptom portrayed on television and in movies. However, only 10 to 15 percent of people with Tourette syndrome experience it, Woods said.
2. Myth: Bad parenting causes tics.
Fact: “We know for sure that Tourette’s is genetically based,” Woods said. Scientists haven’t been able to isolate a specific gene. Rather, they believe that multiple genes interact in predisposing a person to the disorder. Twin studies have found a concordance rate of approximately 70 percent in identical twins and 20 percent in fraternal twins, he said.
In people with Tourette syndrome, there appears to be a dysfunction in the basal ganglia, which is involved in motor control. Specifically, the basal ganglia “don’t inhibit movement the way they should. The unwanted movements that get out would normally be stopped.”
Environment also plays a role. “Tics are very sensitive to what goes on around them.” Tics can worsen whenever kids are stressed out, anxious or even excited. For some kids, concentrating on another activity “can make tics go away.”
3. Myth: The only treatment for Tourette syndrome is medication.
Fact: “Many kids with tics don’t need treatment,” Woods said. Whether a child gets treatment depends on the severity of their tics and how much they interfere in their daily life. When a child does need treatment, behavior therapy can help.
The comprehensive behavioral intervention for tics (CBIT) teaches kids to recognize when they’re about to tic and to use a competing behavior. Individuals with Tourette syndrome typically experience a premonitory urge, a physical sensation that occurs immediately before a tic. It may feel like an itch, pressure or tickle, Woods said.
In his book The World’s Strongest Librarian, author Josh Hanagarne likens it to the urge to sneeze: “There’s a pressure that builds up in my eyes if I want to blink, in my forehead if I want to wrinkle it, in my shoulders if I want to jerk them up toward my ears, in my tongue if I need to feel the edge of it slide against a molar, in my throat if I need to hum or yell or whistle. The urge can also be everywhere at once, which results in a tic where I flex every part of my body, hard and fast.”
When kids feel the urge, they can perform a behavior that interferes with the tic. As the authors of this journal article write: “For example, if a patient has the urge to engage in a shoulder tic, the competing response might involve isometric tensing of arm muscles while pushing the elbow against the torso. Thus, the competing response encourages the patient to respond to the urge to tic in a new way.”
CBIT also helps kids spot and cope successfully with the stressors that worsen their tics. Research has shown positive effects for CBIT in both kids and adults. For instance, this study found that CBIT decreased the severity of kids’ tics. This study also found a decrease in tics in adults who received CBIT.
Unfortunately, behavior therapy isn’t widely available. Medication is used more frequently to treat tics. Doctors typically prescribe clonidine or guanfacine as the first line of treatment, Woods said. They also may prescribe atypical antipsychotics, such as risperidone, he added.
4. Myth: Teaching kids to suppress one tic will trigger more or different tics.
Fact: Research has found that when kids successfully suppress their tics, they don’t experience an increase in tics. One study even found that after the suppression condition, tics decreased by 17 percent when compared to the baseline.
Research also has shown that treating one type of tic does not increase other types. In this study kids received treatment for vocal tics, while motor tics were left untreated. The motor tics did not increase. In fact, there was actually a 26 percent decrease in motor tics.
While Tourette syndrome tics can be bothersome and intrusive, they tend to shrink in severity or dissipate altogether over time. For kids and adults whose symptoms are especially disruptive or don’t go away, effective treatment is available.
- Learn more about Tourette syndrome at the website for the Tourette Syndrome Association.
- This article in the APA’s Monitor on Psychology explores the advances in behavior therapy for Tourette syndrome in greater detail.