Tourette’s Syndrome: Just the Facts

Tourette’s Syndrome is a condition that causes people to make involuntary sounds or movements. These are called tics.

The condition is most likely to start in childhood with symptoms usually improving after a few years and in some cases disappearing completely. There is no cure for Tourette’s syndrome but treatment is available to manage tics if they are severe. Tics are not usually considered to be harmful to your overall health but some physical tics can be painful or result in injury, such as sudden movements of the limbs. Lots of people experience tics without having a diagnosis of Tourette’s Syndrome.

Tics usually appear between the ages of two and fourteen with six being the average onset age. Involuntary swearing is often associated with Tourette’s syndrome but it only affects one in ten people with the condition. Most people with Tourette’s will have a mixture of vocal and physical tics; these might be worse on some days than others and can be aggravated by factors such as anxiety, fatigue and stress.

Vocal tics can include:
• grunting
• throat clearing
• whistling
• coughing
• tongue clicking
• animal sounds
• saying random words and phrases
• repeating a sound, word or phrase
• swearing

Physical tics might include:
• blinking
• eye rolling
• grimacing
• shoulder shrugging
• jerking of the head or limbs
• jumping
• twirling

Famous people who also have Tourette’s Syndrome include singers Billie Eilish and Lewis Capaldi, YouTuber Casper Lee and actor Seth Rogen.

Managing symptoms

Behavioural therapy has been shown to reduce tics in certain people. This is because many people with Tourette’s syndrome experience a strong urge before a tic, this is known as a premonitory sensation (an urge that acts a bit like a warning signal – a bit like the feeling you get before you sneeze or the feeling that builds up in your eyes if you try not blinking for as long as you can). Premonitory sensations are only relieved once a tic has been carried out. By noticing these sensations and doing something to counteract the tic before it happens, can help gain more control over the tic. By working out the feelings that trigger tics, trained professionals are often able to support people to reduce the frequency and severity of them.

Behavioural therapy may be available on the NHS; you should discuss this with your GP or school nurse. Medicine is not usually offered unless symptoms are particularly severe and causing severe pain.

How school can help

If you have Tourette’s syndrome, you may be eligible to receive support at school. If you have been diagnosed with the condition or experience tics, speak to your school about the assistance they can offer.

Your school may be able to make adjustments to support your learning. They might also suggest informing the rest of your class about Tourette’s to help to reduce any misunderstanding or bullying. They can also help with reminders about helpful strategies.

As you grow older, you may also be entitled to support at work and in everyday life. Tourette’s Syndrome is considered a disability under UK law, which prohibits people with the condition from being discriminated against because of it.

How to get help

If you have any more questions on this area or would like to speak to somebody about this topic, have a look at the links or search for your local services in the blue box below. Alternatively, you can always contact your school nurse.

• w: Tourette's Action
  
• w: NHS - Tourette's syndrome
  
• w: GOSH Tourette's information pack