Learning the Truth About Tourette Syndrome

Tourette syndrome is a medical condition that may be widely recognized, but there remain many misbeliefs about it. Tourette syndrome is a condition that affects the brain and nerves, causing people to make repeated movements and sounds, also known as motor and vocal tics, that they cannot control.

For many, the symptoms begin in childhood and according to the Centers for Disease Control, can vary from mild to severe. They can also change over time. Because of its wide-range of symptoms, Tourette can cause problems for children’s physical, mental and emotional well-being. Various organizations, including the CDC, are working to reduce the negative misunderstandings about Tourette and those who have the diagnosis. They are also endeavoring to improve access to health care, get time diagnosis for sufferers and help people with the syndrome lead healthy and productive lives.

To be diagnosed with Tourette Syndrome, a person must:

• have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time.
• have had tics for at least a year. The tics can occur many times a day (usually in bouts) nearly every day, or off and on.
• have tics that begin before age 18 years.
• have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington disease, or postviral encephalitis).

People may also be diagnosed with Persistent (Chronic) Motor or Vocal Tic Disorder. To be diagnosed with a persistent tic disorder, a person must:

• have one or more motor tics (for example, blinking or shrugging the shoulders) or vocal tics (for example, humming, clearing the throat, or yelling out a word or phrase), but not both.
• have tics that occur many times a day nearly every day or on and off throughout a period of more than a year.
• have tics that start before age 18 years.
• have symptoms that are not due to taking medicine or other drugs, or due to having a medical condition that can cause tics (for example, seizures, Huntington disease, or postviral encephalitis).
• not have been diagnosed with TS. Because of the general misunderstandings about Tourette, the CDC is working to dispel myths and provide a greater understanding of people about the syndrome.

For example:

1. People with Tourette don’t always blurt out obscenities. The CDC acknowledges that probably the most common misbelief about Tourette, particularly as portrayed on television and in movies, is that people with the condition blurt out obscenities or curse words. The reality is that most people with Tourette do not excessively or uncontrollably use inappropriate language. That particular element of Tourette only affects about 1 in 10 people. Known as coprolalia, it is a “complex” tic that is difficult to control or suppress.
2. Having a tic doesn’t mean that you have Tourette. Tics — making sounds or movements that are difficult to control or suppress — are a part of having Tourette. But having a tic is complicated. A person can have tics ranging from simple, temporary tics lasting a few weeks or months, to having many complex tics that are long-lasting. Tics can also range from mild and hardly noticeable to severe and disabling. To have Tourette means that a person has at least two different motor tics and at least one vocal tic, and has had tics for more than a year.
3. People with Tourette cannot control their tics (movement or sound) even though they may want to. The motor and vocal tics of Tourette are involuntary, meaning that people do not do the tic on purpose. While the exact cause of tics is still not known, many people compare the feeling of having a tic to having an itch or having to sneeze. You may try to stop the feeling, but eventually, you will probably scratch or sneeze and you will feel a little better until the urge comes back. When people try to hold back their tics, it can cause stress and the tic may become worse the CDC notes.

Many people have fewer tics as they age. Those with Tourette can lead successful and active lives. Among the more famous people with the disorder include actor Dan Aykroyd, who has a mild form; the late aviation pioneer Howard Hughes; soccer icon David Beckham; comic and television star Howie Mandel; composer Wolfgang Amadeus Mozart and singer Billie Eilish.