Why are there myths and misconceptions about Tourette Syndrome (TS)?
One reason could be that TS is not diagnosed with a blood, laboratory, or imaging test. Instead, knowledgeable clinicians evaluate and interpret a patient’s symptoms. Depending on who is observing symptoms and reporting them, TS can go undetected or undiagnosed. Also, the symptoms which characterize TS are exhibited involuntarily and for some people seem embarrassing or awkward. TS raises human curiosity because of how it presents itself.
In this article, we address five of the most frequently questioned facts or myths about TS.
Myth #1: Everyone with TS has coprolalia. False. The most reported myths about TS surround coprolalia or the blurting out of obscenities or curse words. This tic can be embarrassing for some individuals and the involuntary outbursts can even include racial or ethnic slurs. The reality is that only about one in ten people with TS are affected with coprolalia.
Myth #2: Having a tic means that a person has TS. False. Not all people with tics meet the diagnostic criteria for TS. What is a tic? Tics can be simple or complex, and are generally grouped into categories:
- Simple motor tics: Eye blinking, body jerking, facial grimacing, head jerking, shoulder shrugging
- Simple vocal tics: Sniffing, throat clearing, humming, tongue clicking, whistling, yelping
- Complex motor tics: Jumping, smelling, touching other people or things, twirling and rarely, copropraxia (demonstrating socially inappropriate gestures)
- Complex vocal tics: Saying words or phrases out of context, stuttering and rarely, coprolalia (vocalizing socially unacceptable words)
A person can have tics ranging from mild and barely apparent to severe and disabling. They may be short lived or last many months. But to be diagnosed with TS, as established by the medical community, a person must have at least two different motor tics and at least one vocal tic, and the tics must continue for longer than one year.
Myth #3: The only effective treatment for TS is medication. False. Traditional medications prescribed to treat TS aim to reduce tics so they are no longer causing interference or distress, and there can be side effects. The medications do not provide a cure and the tics may not completely go away. Behavioral therapies and relaxation strategies are becoming more commonly recommended by doctors. Recent and ongoing research is uncovering successful new treatments and strategies. Comprehensive Behavioral Intervention for Tics (CBIT), which has evolved over the last decade or so, trains individuals with TS to manage their tics while identifying and neutralizing the stressors that can exacerbate them. CBIT adds an environmental component to an established treatment called habit-reversal training, which has been used to control behaviors, such as nail biting and thumb sucking, for roughly 40 years. CBIT has shown promising results both in clinical trials and in practice. See: https://njcts.org/tsparents/cognitive-behavioral-therapy-for-tourette-syndrome/
MYTH #4. Teaching children with TS to recognize and suppress or control tics increases severity or leads to new tics. False. Research has found that kids who successfully suppress tics do not have an increase in tics. Strategies for controlling and inhibiting tics are advancing. In fact, research reported by The National Center for Biotechnology Information has demonstrated that children with chronic tics (including Tourette syndrome and Chronic Tic Disorder: TS/CTD) can learn to suppress tics, particularly when an immediate, contingent reward is given for successful tic suppression.
MYTH #5. People with TS cannot lead normal, active lives. False. On the contrary, people diagnosed with Tourette syndrome can be highly successful people. Billie Eilish, Tim Howard, Jamie Grace and Michael Wolff are well-known examples of successful people who were diagnosed with TS.
For many people, tics may gradually decrease after childhood. One half to two thirds of children with TS experience a substantial decrease or complete remission of tics by the end of adolescence. But for others, symptoms will continue into adulthood.
Although the disorder is generally chronic, it is not a degenerative condition. Individuals with TS have a normal life expectancy. TS does not impair intelligence.
We’ve listed some common myths, but if you feel that we’ve left something out, we encourage you to leave a comment below.