Tourette Syndrome

What is Tourette Syndrome?

Tourette Syndrome (also known as TS, Tourette’s, or Gilles de la Tourette Syndrome) typically starts around the age of 6 or 7 and tends to peak in early adolescence.

It is a complex, genetically-determined condition characterised by tics - involuntary, sudden and repetitive movements or sounds.

Many people with the condition will also experience co-occurring conditions, for example OCD, ADHD, Autism, Sensory Processing Differences and Anxiety.

Tourette’s is not bad behaviour or a laughing matter. 

It’s a neurological condition that can be debilitating for anyone experiencing it. It’s also not as rare as you may think: Tourette’s affects 1 in 100 school-aged children, so is more common than many people realise.

What is it like living with Tourette syndrome?

M: It’s very tiring, draining, frustrating and annoying, it’s like having constant hiccups, forever! It gets in the way of everything I do.

E: It can be stressful and overwhelming, sometimes painful. But there are good parts, like being the funniest of all my friends.

How do you manage with living with Tourette’s? Do you have any day-to-day coping strategies?

M: I don’t remember my life before my tics started, it is all I can remember so I have nothing to compare it to. I try my best to supress or mask my tics when I’m not at home, this helps me to feel more comfortable around other people and like I’m not being watched, when a tic happens and I haven’t been able to supress of mask it, it feels like everyone is watching me. Although suppressing my tics helps me it is really tiring to do, it stresses me out a lot and makes me feel awful by the end of the day, it’s like I have been holding my breath all day and I can only breathe once I get back home.

E: Sometimes I can’t cope well, but certain methods help. For instance: deep breathing, hair bands on my wrist and doing my favourite activities.

What are some common myths that need busting around Tourette’s?

M: Certain people just laugh about it all the time, people don’t take you seriously if you say you have Tourette’s because they think that if you have Tourette’s you should be swearing all the time and getting into trouble. Not all my tics are visible so if people can’t see them they think they are not happening. Most people don’t know what Tourette’s actually is, they see certain people on TV or on the internet and they think that all people with Tourette’s should act like that, and if you don’t that means you haven’t got it. 

E: Tourette’s is not just swearing. Tourette’s is more than tics.

What are the benefits of living with Tourette’s?

E: I am more self-aware of my actions and words than the regular 11 year old.

What can people/society do or learn to support the Tourette’s community more?

M: I think schools need to be doing more to teach the children and their teachers about all neurological conditions, including Tourette’s so that everyone has a better understanding of the people that suffer with them.  

E: Be more open-minded to learn more about the community and be patient.

What do you think is the most important thing for people to understand about Tourette syndrome?

M: People with Tourette’s don’t mean to annoy you with their tics, they are not doing them in front of you to try and be funny or to irritate you, they can’t help it or control it, it is much more annoying and uncomfortable for them than it is for you. Don’t compare people with Tourette’s syndrome against each other, we are all different and so are our tics. 

E: We can’t control this. Whatever we say or do we don’t mean. At the end of the day we’re no different than you.

So what can I do to support the Tourette’s community more?

Emma Mcnally, CEO of Tourettes Action, wants people to understand how TS affects individuals on a daily basis.

"Much of the stigma associated with Tourette’s is due to misunderstandings, therefore the more people that are educated the quicker we will have a more inclusive and accepting world for those living with TS."

Get started with Tourettes Action's free eLearning course.

• Verbal tics aren’t a reflection of someone’s thoughts or emotions, so don’t take offence
• If you notice someone ticcing, be patient and don't draw attention to them. This helps them to feel more at ease in social situations
• If the tics are funny and the person ticcing finds them funny, it’s ok to laugh with them, never at them
• Some tics can take the form of frequent sniffing or clearing of the throat so don't assume that the person has a cold
• When interacting with someone who has Tourette’s, don’t make assumptions. Ask questions: It shows you care and want to understand. Always ask politely and at a good time, not when they're overwhelmed or in distress
• Understand that many people with Tourette’s feel the need to suppress their tics for a period of time or in a certain situation, so if they disappear or take themselves out of a situation, be understanding. Try to acknowledge that you can see they are struggling: Give them a kind smile or ask how you could help
• Don’t stare. If you can’t ignore someone ticcing, just smile at them kindly (but not in a pitying way) to reassure them that they’re not bothering you
• If you see someone with Tourette’s who is clearly distressed and having a tic attack, it’s likely they won’t be able to interact with strangers and just need to get to a secure, quiet spot where they can let the tics go without fear of judgement. The best thing to do is to ask calmly if you can help them and let them tell you what you can do
• Never film or take pictures of someone. As with any situation, you need someone’s permission to photograph them
• If you’re with children, make sure that they aren’t pointing or laughing. Set the right example and explain the condition to them later

The Mix would like to thank Marley and Elliot for their invaluable contributions to this article, and Emma Mcnally and Tourettes Action for helping The Mix to raise awareness.