Tourette's Syndrome FAQ

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A lot of people have tics, like sniffing, grunting, or licking lips. Sometimes, a person has tics for long enough that a doctor says that person has Tourette's Syndrome.

People with TS have had at least one movement and one sound or word tic. They have had tics for over a year. A year is the time it takes to get from one birthday to the next birthday. In order to have a TS diagnosis a person has to have not gone over three months (that is about the length of summer vacation) without having tics.

Tourette’s Syndrome is genetic. That means that a parent, uncle, aunt or someone else in the family probably has tics too; just like you might have been born with your mom's blue eyes, your father's nose, or your great-grandfather's crooked big toes.

Sometimes you may feel the need to move or make the sound before you do it. Feeling that need does not mean that you have complete control over the tic.

You might be able to keep yourself from ticcing for a little while (see "Can I stop ticcing if someone asks me to?") but eventually you will have to let the movement or sound out.

There may be times you won't even realize you have ticced until after you have done it. You may be sitting there, hear a sound and think, "That was me?"

Sometimes a new tic will start because of something that you did for a reason but then couldn't stop doing. For example, one kid with TS got a cold and started sniffing. Then after the cold was completely gone, he kept sniffing because the sniffing had turned into a tic.

This list contains several examples of motor (movement) and vocal (word or sound) tics. This list gives examples of tics but there are lots and lots of tics not on this list. If we made a list with every tic on it, the list would be very very very long. Just because a tic is on this list does NOT mean you will have it someday. In fact, you will not have most of the tics on the list.

Do you have one or more of these tics? Do you have some tics that aren't on the list?

Motor	Vocal
Eye blinking	Clearing throat
Facial grimace	Coughing
Shoulder shrugging	Humming
Smelling	Whistling
Touching	Repeating your own words (palilalia)
Jumping	Repeating other's words (echolalia)
Biting self, others, or things	Screaming
Touching chin	Shouting
Clicking teeth	Repeating phrases or words
Abdominal jerking, abdominal tensing	Yelping
Banging things	Talking to oneself
Chewing on self, others or things	Snorting
Head movements (jerking, tossing hair, etc)	Coprolalia - speaking obscenities or socially taboo or inappropriate phrases
Licking lips, licking others or self	Grunting
Opening mouth	Gasping
Tearing things	Making animal noises
Stretching neck	Moaning
Cracking (fingers, jaw, neck)	Talking in an accent
Kicking	Changing pitch or volume of voice
Hitting	Belching

TS can be a hard thing to explain to people. This is how Haejinn, one special adult with TS, explains it to kids:

First, let’s talk about the brain. We all know that our brains are kept in our heads. Did you also know that the brain is kind of the BOSS of your whole body? The brain has to keep track of what every other part is doing and then try to fix it if a part isn’t doing what it’s supposed to do. If you want your hand to move over and pick up a glass of juice, it’s your brain that is in control of every movement that is needed to get that juice into your hand. But your brain is also responsible for things you don’t even pay attention to. Did you know that when you’re reaching for that glass of juice, your brain is also talking to the muscles in your legs and waist, making them move ‘just right’ so that when you do reach out for the glass, you don’t fall over? I’ll bet you didn’t even think of that!

So, I’ll bet if you try to think of all the things the brain has to pay attention to, you can imagine that it is very, very busy! Since the brain is so busy, it has helpers. You can think of these helpers as little messengers. The messengers carry the brain’s message to the right part of the body. For example, if the brain decides it’s time for the toes to wiggle, it tells a messenger “Hey, go tell those toes to start wiggling!”.

Sometimes people are born with TOO MANY messengers. After all the messengers have been assigned their job, there's a bunch of these messengers left over. They want to help too, but the brain says 'No, I've already got enough helpers. Go sit yourselves in the corner over there and occupy yourselves and stay out of our way."

Well, of course, the extra-messengers soon get bored and angry and decide they're going to help whether the brain likes it or not. So THEY start telling different parts of the body to do stuff. Now, these parts don't know there are extra messengers. They just know that when they're told to do something, they do it EVEN IF THE OWNER OF THE BODY DOESN'T WANT THAT PART TO DO IT.

If you don’t believe me, try to not blink as long as possible. Pretty soon the brain will decide it's time to blink and send down a messenger. The poor eye will be confused.

"Here's the kid I belong to telling me not to blink, but at the same time, here's one of the brain's messengers telling me that I HAVE TO blink. Well, I better listen to the messenger before the brain gets mad at me!"

So then, of course, your eye will blink because it thinks it’s doing what the brain tells it to do.

There’s a lot of silly things these extra messengers make me do. Sometimes they want me to stamp my feet. Sometimes they want me to growl. (I like that one, it’s kind of fun!). Sometimes they make me shake my head. And lots more!

Sometimes, but swearing or saying socially inappropriate things (this means things that could hurt other people's feelings) is very rare. This kind of tic is called coprolalia and only a small number of people with TS tic in this way. People with coprolalia don't mean to hurt anyone's feelings and don't get to pick the words that they say.

Most people with TS, but not all, start having fewer tics when they are a teenager or adult.

Some people with TS, but not all, can stop their tics for a short period of time but sooner or later the tics will have to come out. That does not mean that you should try and hold your tics in. It can be very tiring to try and hold in your tics. Some kids hold their tics in during class (or other quiet time like church, the library, etc.) and then have a burst of tics at lunch, recess, or when they get home.

Some people describe it as being like an itch. You keep trying not to scratch but it itches so much. Pretty soon, you can't pay attention to anything except the itch. Finally, you get so tired from trying not to scratch that you can't take it anymore. Then you scratch like crazy, for a long time, until you think it feels better and you end up scratching way more and way faster than if you'd just scratched it when it first started itching.

No one completely understands. Some kids tic more when they are nervous or tired, some kids tic more when they are sick, some kids tic more when they are watching TV or playing video games, and some kids tic more when they are relaxed. Just like no two people are the same, no two people with TS are the same.

That is one of the mysteries of Tourette's. You may be coughing and head jerking one month then it changes to lip licking and humming the next. You just never know. Some people have one tic that is pretty much always there and others that change. Some people have one or two tics at a time and some have more. TS is different for everyone.

There is not a cure for TS. Sometimes parents and doctors decide that a kid has enough tics that they want to use medicine to help the kid have fewer tics.

Most kids with Tourette's won't be teased about their TS. However, if there is some mean kid teasing you, it is not your fault. That kid could probably find a reason to tease anyone. Check out some of the bullying websites listed in our links section. There, you can find strategies to help you.

It is named after Dr. Georges Gilles de la Tourette, a French doctor. The first reported case of Tourette syndrome was made in 1825 by Dr. Itard, another French doctor. In 1885, Dr. Gilles de la Tourette described nine patients with the syndrome of multiple motor and vocal tics. It is named after him because he was the first to describe these patients as having a movement disorder.

You can act just like you act around anyone else. It is best not to point out tics to your friend. If your friend feels that you are looking at the tics all the time, it might make your friend nervous. Being nervous sometimes makes people with Tourette's tic more.

Sometimes, kids with TS will joke about their tics with you. That is okay, but it is best to let your friend make the jokes. You don't want to accidentally hurt your friend's feelings.

Locations of hidden items in the "game room"- 1)click and hold the mouse button over the girl's ponytail to see music playing 2)click and hold the chair to see a teddy bear appear 3)click and hold the blank paper on the wall to see a pencil writing on the paper 4)click and hold the area between the chair and the computer to see a dog come around the corner 5)click and hold the area above the home sign to see a paper airplane fly through the room 6)click and hold the front left pool table leg to see a spider scurry across the floor 7)click and hold the lower middle area of the floor to see a soccer ball bounce. Depending on connection speed- times to see images may vary.

Copyright 2006. All right reserved.
No part of this publication may be copied, re-printed, or used in any form without my prior written consent.
By Cristimo3: Growing Up With Tourette's Syndrome- Information for Kids

This website does not support the websites below nor can we assure that they are safe for your computer. Please be cautious if using one of these links.