WHAT IS TOURETTE SYNDROME?
Tourette Syndrome (TS) is an inherited, neurological disorder characterized by repeated involuntary movements and uncontrollable vocal (phonic) sounds called tics. In a few cases, such tics can include inappropriate words and phrases. (Check out our FAQs)
A Brief History of Tourette Syndrome
The disorder is named for Dr. Georges Gilles de la Tourette, the pioneering French neurologist who first described an 86-year-old French noblewoman with the condition in 1885. He noticed that the Marquise and patients like her had symptoms that persisted over time, and the vocalizations were in contrast to the person’s nature and upbringing. His theory was that the symptoms must be a hereditary condition. He wrote an article on the subject called “Maladie des Tics.”, which started a debate about the cause of the disorder that we now know as Tourette Syndrome.
Amazingly, this debate continued until the early 1970’s when Arthur Shapiro, he has been described as “the father of modern tic disorder research”[ and his wife, Elaine, a PhD finally, succeeded in persuading the media and the medical community that TS was neurological rather than psychological. To read more about Gilles de la Tourette, see https://tourette.ca/the-man-behind-the-name-gilles-de-la-tourettes-story/
How widespread is Tourette Syndrome?
According to a 2022 study by researchers at the CDC, 1 in 50 school-age children have Tourette Syndrome or a persistent Tic Disorder. This is more than DOUBLE the amount that experts previously believed.
The researchers also estimated that 350,000–450,000 U.S. children and adults have Tourette syndrome. About one million U.S. children and adults have other persistent tic disorders.
Studies also suggest that one half of the children with TS are undiagnosed.
Who does Tourette Syndrome affect?
TS can affect people of all ethnic groups; males are affected 3 to 4 times more often than females. TS symptoms generally appear before the individual is 18 years old and may often be accompanied by other disorders such as:
- School Phobias
- Sleep & Mood Disorders
In fact, among children diagnosed with the disorder, 86% also have been diagnosed with at least one additional mental, behavioral, or developmental disorder. In addition, studies indicate that over 42% of children diagnosed have at least one chronic health problem.
How is Tourette Syndrome diagnosed?
There is no specific test for Tourette Syndrome. The American Psychiatric Association’s Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) provides guidelines so that health providers can best determine a diagnosis.
TS symptoms that lead to a diagnosis include, but are not limited to:
- Both multiple motor and one or more vocal tics are present at some time during the illness, although not necessarily at the same time.
- The occurrence of tics many times a day (usually in concentrated bouts) nearly every day over the span of more than one year.
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 (oh boy!), stuttering and rarely, coprolalia (vocalizing socially unacceptable words)
The presence of co-occurring disorders can complicate both diagnosis and treatment of Tourette Syndrome.
How does Tourette Syndrome progress?
The natural course of TS varies from patient to patient. Although TS symptoms range from very mild to quite severe, the majority of cases fall in the mild category. However, TS is not degenerative. Intelligence levels and life span are no different than that of everyone else.
What causes Tourette Syndrome?
Genetic studies indicate that TS is inherited as a dominant gene and that a person with TS has about a 50 percent chance of passing the gene to one or more of his/her children. This genetic predisposition may express itself as TS, as a milder tic disorder or as obsessive compulsive symptoms with no tics at all.
NJCTS is fully committed to learning more about the causes of TS, particularly identifying genetic factors that play a role in causing TS and associated disorders. In 2007, NJCTS partnered with Rutgers University to further research on TS genetics. Read more about the NJCTS Tourette research with Rutgers.
What treatments are available for TS?
There is no known cure for TS, but a lot of progress has been made in understanding the best treatments for reducing the severity and impact of TS and its related symptoms. Many people experience marked improvement in their late teens or early 20s. Most people with TS get better as they mature and those diagnosed with TS can anticipate a normal life span.
The majority of people with TS are not significantly disabled by their tics or behavioral symptoms, and therefore do not require medication.
If symptoms affect a person’s daily life, the newest guideline from the American Academy of Neurology (AAN) recommends that doctors first consider prescribing a treatment called Comprehensive Behavioral Intervention for Tics. CBIT combines relaxation training, habit-reversal training, and behavioral therapy to help reduce tic symptoms. The guideline states that CBIT is effective in both children and adults and has no major side effects.
In instances where symptoms of TS or symptoms of related disorders are not improved with CBIT, medications may be prescribed. There is no one specific drug for the treatment of Tourette Syndrome, and each individual responds differently to drug therapies; but a number of medications have shown positive results in controlling symptoms of TS and its associated conditions.
- Read more about the AAN’s recommendations
- Latest news on treatments for Tourette symptoms
- Download a fact sheet on CBIT
Tourette Syndrome is a complex disorder that is still not completely understood.
My child has been diagnosed with Tourette Syndrome, what’s next?
NJCTS is here for you. Explore the wide variety of resources we’ve compiled to help families and individuals just like you. If you cannot find the answers you need, please reach out to us.
FAQ’s About Tourette Syndrome
Below are some frequently asked questions about Tourette Syndrome. The answered have been provided with help from the National Institutes of Health. If you have unanswered questions, please call us at 908.575.7350.