Seth is 10 years old, and he gets noticed a lot — but not for his cool skateboard or new sneakers. Seth gets second looks from people because he twitches, shrugs, jerks his shoulders, and flexes his jaw. He can stop doing these things, but not for long. "One time," Seth says, "some kid asked me why I was moving like that. Before I could answer, another kid said, 'Because he's weird.' "
But Seth isn't weird. He has a condition called Tourette syndrome.
What Is Tourette Syndrome?
Tourette syndrome is a condition that affects a person's central nervous system and causes tics. Tics are unwanted twitches, movements, or sounds that people make. To have Tourette syndrome, a person must have two tics that affect body movement and one that is a sound.
All kids who have Tourette syndrome have tics, but a person can have tics without having Tourette syndrome. Some health conditions and medicines, for instance, can cause tics. And many kids have tics that disappear on their own in a few months or a year.
If you are having trouble imagining what tics are like, they're kind of like hiccups. You don't plan them and you don't want them. You can try tricks to make the hiccups stop, like drinking water upside down, but you can't just decide to stop hiccuping. Hiccups that last too long can even start to hurt and feel uncomfortable. Tics can be like that, too.
Sometimes, tics can also be a little like "scratching an itch." You don't really want to scratch the itch, but you just can't help it. In these situations, someone has some control over the tic. The person feels an urge to make a movement or a sound before actually doing it. The person can even hold back the tic for a while. But eventually the person will have to let the tic out.
Tourette syndrome is more common than doctors once thought: It affects at least 1 in 1,000 to 2,000 people and maybe more. It is believed that about 100,000 Americans have Tourette syndrome. Many more may have other tic disorders that are less severe.
Tourette syndrome is more common in boys than in girls. It almost always starts before age 18 — usually between ages 5 and 7. Even though kids with Tourette syndrome can get better as they get older, many will always have it. The good news is that it won't make them sick or shorten their lives.
Sometimes a person with Tourette syndrome might have other conditions, like attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), or trouble learning.
Why Do People Get Tourette Syndrome?
Tourette syndrome is probably, in part, a genetic condition, which means that a person inherits it from his or her parents. Tourette syndrome is not contagious. You cannot catch it from someone who has it.
Doctors and scientists don't know the exact cause, but some research points to a problem with how nerves communicate in the brain. Neurotransmitters — chemicals in the brain that carry nerve signals from cell to cell — may play a role.
People with Tourette syndrome have motor tics and vocal tics. Motor tics are movements of the muscles, like blinking, head shaking, jerking of the arms, and shrugging. When a person with Tourette syndrome suddenly begins shrugging, he or she may not be doing it on purpose. This may be a motor tic.
Vocal tics are sounds that a person with Tourette syndrome might make with his or her voice. Throat clearing, grunting, and humming are all common vocal tics. A person with Tourette syndrome will sometimes have more than one type of tic happening at once. Tics can happen throughout the day, although they often occur less, or go away completely, when a person is concentrating (like working on a computer) or relaxing (like listening to music).
The type of tic often changes over time. The frequency of the tic — how often it happens — usually also changes. Tics are usually worse when a person is under stress, like when he or she is studying for a big test. Tics are often also worse when a person is excited or very energized about something, like at a birthday party or a sports activity. Tics can even occur when a person first falls asleep but usually diminish dramatically and disappear completely during the deeper stages of sleep.
The tics that come with Tourette syndrome may not necessarily need to be treated because they're rarely dangerous or harmful. But if they are embarrassing, painful, or get in the way of school, medication can help.
Tourette syndrome is not a psychological condition, it is a neurological one. However, psychological factors are very important in this condition. Psychological distress can make the tics worse, and kids with Tourette syndrome might feel very upset because of the tics and the problems that go with them. Counselors and Tourette syndrome organizations can help kids learn how to explain tics to others.
How Should I Act Around Someone With Tourette Syndrome?
Kids who have Tourette syndrome want to be treated like everybody else. They can do regular stuff, just like other kids. In fact, at least two kids with Tourette syndrome grew up to become sports stars. Soccer player Tim Howard is the starting goalkeeper for both Everton (in the English Premier League) and the United States national team.
Likewise, former major league baseball player Jim Eisenreich struggled with Tourette syndrome during his career. But he stayed in the game, saying he wanted to be a role model for kids. Here's how he put it once in an interview with Baseball Weekly: "My calling in life was not to be a superstar ballplayer. I have another job to do: to be a quality player, help my team win, and show kids who have Tourette what they can accomplish."