Explaining Tourette Syndrome

Explaining TS

This information, designed for 7-12 year olds, is for children to better understand and explain Tourette Syndrome to their classmates, friends, and family.

What is Tourette Syndrome?

Tourette Syndrome, or TS for short, happens when your brain makes your body move or say something that you might not want to. When this happens it is called a tic.

You know when you get a bug bite, you can’t help but scratch it even if you don’t want to? That is what a tic is like. Someone with TS can tic at any time and won’t be able to help it, even if they don’t want to do it. Sometimes people can stop the tic from happening but it can be very hard to do; just like it’s really hard to not scratch that bug bite.

What are the different types of tics?

Motor: when you body does something you can’t control (examples: eye blinking, head shaking, shoulder shrugging)

Vocal: when you make a sound you don’t want to make (examples: sniffing, coughing, throat clearing)

Sometimes only one part of your body tics and sometimes more than one part might tic. For example, you might not be able to stop blinking your eyes and clearing your throat at the same time.

What else should I know about tics and TS?

  • Sometimes we see on TV that people with TS swear or say inappropriate things, but this only happens with 1 out of every 10 people who have TS.
  • Tics often happen more if you are nervous, upset, excited, or tired.
  • You might not have any tics while you are doing something that you are focused on, such as playing a sport or instrument, swimming, dancing, drawing, or doing something you really enjoy.
  • You might not always be able to tell when a tic is going to happen, but sometimes you might start to feel an urge before it begins.
  • Sometimes tics will go away as you get older, and sometimes you will still have them as a grown-up. You may get some new ones while others go away. Your tics can also change, and as time goes on, you might start to have different kinds of tics than you usually have.

What does it mean if I have Tourette Syndrome (TS)?

TS and tics are very common, meaning that a lot more kids and adults have it than you would ever know. Scientists tells us that at least 1 in every 100 kids have TS or tics–that is a lot of kids! Usually kids start to have tics between the ages of 5 and 7 years old. As you get older and become a teenager, the tics could change. Sometimes your tics might go away when you get older, but for those that don’t there are a lot of ways that doctors can help.

How do I know if I have TS?

If you have one or more tics, you can go to a doctor’s office and the doctor will ask you questions about what types of movements and sounds you make and how often the tics happen. The doctor will ask you these questions to help decide if you have TS. You should also know that you can have a tic, but it might not always be TS. Either way, if your tics hurt or bother you at all, the doctors will come up with ways to help you feel better.

Some kids with TS will also have other conditions, such as problems with writing, depression, anxiety, learning challenges, a hard time with changes, and even rage.

Some kids have the need to do something a certain way or until it feels just right, which may be obsessive compulsive disorder, or OCD for short. It’s important to be honest with your parents about what you’re feeling. They can help talk about these other issues with the doctor who is helping you.

How did I get Tourette Syndrome (TS)?

You did nothing wrong to get TS and it is not contagious. Just like you can’t catch your friend’s eye color, you can’t catch Tourette from someone else. Doctors don’t know how people get TS, but we know that family genes play a role. This means it is similar to having the same hair color or being the same height as one of your other family members. Having TS is like if one of your friends or classmates has asthma. Your friend with asthma might not know how they got it, but they can see a doctor to help make them feel better when the asthma is bothering them.