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Tourette Syndrome

WHAT IS TOURETTE SYNDROME?

1. Tics And Tourette Syndrome - An Overview

What are Tics or Motor Tics?

Tics are brief, sudden repetitive and purposeless movements affecting any part of the body. When they first appear they tend to be in the face and head, most common being exaggerated eye blinking. They may move down from head to toe over time and can include facial grimaces, head nods shoulder shrugs or abdominal walltensing. These movements, which only involve isolated muscle groups, are known as Simple Motor Tics.

Tics can also seem to be more purposeful in nature and occur in an orchestrated fashion, for example making a facial gesture, touching things or family members, bending or hopping. When these are present they are called Complex Motor Tics

An individual can experience a variety of motor tics over time, occurring in different sequences and sometimes occurring in bouts.

What are vocal tics?

Vocal tics are involuntary repetitive sounds. They too can be divided into Simple Vocal Tics such as coughs, sniffs, grunts, throat clearing, yelps or Complex Vocal Tics such as words or phrases.

I or my child has tics - what will happen into the future?

For most people, tics start when they are a child, often between 6 or 8 years of age. For some, the tics may come and go fully within a year.This is known as Transient Tic disorder. This is common and affects up to 20% of children at primary school age.They comprise simple motor or vocal tics, usually affecting the head and neck region lasting a few months. They may recur and many dismiss them as ‘little habits’.

For others, they may have tics in one area that continue on over time. This is known as Chronic Tic disorder. Blinking is a common form.

About one child in a hundred will develop motor tics and at least one vocal tic. If these occur many times in the day and last for more than a year, and started before someone was 21 years old, this is known as Tourette Syndrome (TS).

A really important thing to know about TS is that tics don’t stay the same all the time. The type of tic can change, but also you can have times when tics are bothersome, and times when they reduce or even disappear for a while. This is known as ‘waxing and waning’ – some people who have had tics liken it to the moon, getting bigger and smaller at different times. But most importantly of all is that for most people tics are at their worst around 10 to 11 years of age, and they lessen as you go through you teens. In fact, about half of teenagers with TS find they have no or only insignificant tics left by the time they reach the end of their teens. Even those who still have tics usually report tics to be less and as well as being much better able to manage them.

What about swearing and TS?

Many people associate swearing with TS. In fact, coprolalia, where a person experiences bouts of using foul language involuntarily, only occurs in a small minority (less than 1 in 10) of people with TS. In cases of coprolalia, the swearing is usually out of any context, (e.g. not used as part of an argument or in anger). Some people with TS also have a similar experience of using rude gestures, or make socially inappropriate comments or actions. Again these are not common, and are usually out of context, causing the person upset or embarrassment.

Who gets tics or TS?

It has been estimated that between 4-18% of people can have tics at some point in their lives, most likely in childhood. About one child in a hundred will have TS. It is not known exactly why someone gets tics or TS, but we do know boys are more likely to be affected (two to four times more likely than girls). Also if someone else in your family has tics or TS, you may be more likely to have tics or TS.

Are tics just ‘made up’ or because of stress?

We know that tics and TS are in fact neurological conditions, that is they are caused by a difficulty in the part of the brain that controls movement. They are not ‘psychological’ conditions or caused by emotions or stress. However, similar to many physical conditions such as migraine, blood pressure etc. stress and worry can worsen symptoms. Similarly we know that as young people grow

and develop their brain also grows and develops. This may go in some part towards explaining why tics can change and lessen as young people get older.

What can I do about tics or TS?

The most important thing you can do if you have tics or TS is learn about them, and ensure other important people in your life know about tics and TS too. Hopefully the information on this and other websites or in the books suggested will help.

If you think you may have tics or TS, its worthwhile getting it checked out and diagnosed. More information and advice on getting tics assessed and some treatment options is contained in our leaflet Medical Assessment and Treatments for Tic Disorders.

There isn’t any ‘cure’ for tics or TS, but if you do have TS, there are a lot of ways to learn to manage tics. For example, many report tics go away when they are really concentrating on something, for example playing football or computer games or playing a musical instrument. See our information leaflet Living with TS for hints. Some people have other difficulties alongside tics. These can be more of a bother than the tics themselves, and getting help and treatment for these can really help. See our leaflet More than just Tics for information and suggestions.

If you are struggling with school, linking with the school to help them understand tics can be an important first step. For many young people linking with school psychology services can be very helpful, as practical supports for young people with TS are available. See our powerpoint presentation from Dr. David Carey for further details.

Will tics or TS stop me from doing things into the future?

Many young people and adults worry about the future. While we can’t say what the future holds for any particular person, it is important to remember some things. First for most people tics get better as they get older, and they can learn to manage tics they still have much easier. Secondly, tics are just one small part of who you are.

Finally there are many people out there with TS (although you may not have known it), including people who have careers in things you may not have imagined, for example premiership football players, actors and actresses, surgeons and so on.

So whatever you want to do, good luck!

"When a thing was new people said it was not true, later when it became obvious people said it was not important, and when its importance could not be denied, people said it was not new.”

William JamesPhilosopher 1842-1910