What is Tourette Syndrome?

In the UK alone, over 300,000 children and adults experience Tourette Syndrome (TS). To mark Tourette Syndrome Awareness Month, The Mix sat down with leading charity Tourettes Action to explore what TS is, how it affects young people, and what we can all do to help our TS community.

Tourettes Action is the leading support and research charity for people with Tourette Syndrome and their families in England, Wales and Northern Ireland. Their mission? To provide people with TS the practical support and social acceptance they need to help them live their lives to the full.

What is Tourette Syndrome?

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

It is a complex, genetically determined neurological condition of which the key features are tics, which are involuntary movements or sounds.

A large number of people with the condition will also experience co-occurring features and conditions, for example OCD, ADHD, Autism, Sensory Processing Differences and Anxiety.

Tourette’s is not bad behaviour nor a laughing matter. It’s a neurological condition that can be extremely debilitating for anyone experiencing it. It’s also not as rare as you may think. Tourette’s affects 1 in 100 school aged children and is a lot more common than people realise.

Marley (13yrs) and Elliot (11yrs) share their experiences of living with TS:

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 supressing 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?

M: I do not see any benefits to 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/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.

Tourettes Action have a free eLearning course available on their website Tourettes Action eLearning Module (tourettes-action.org.uk) and don’t forget to check out their recent awareness video: https://www.youtube.com/watch?v=_Y8KOC863bs&t=2s

Remember:

• Verbal tics aren’t a reflection of someone’s thoughts or emotions. So don’t take offence.

• If you notice someone ticcing, it’s best to be patient and not draw attention to them, this allows them to feel more at ease in social situations.

• Some tics can take the form of frequent sniffing or clearing of the throat so do not assume that the person has a cold and thrust a tissue in their hand.

• If the tics are funny and the person ticcing finds them funny, then it’s ok to laugh but laugh with them, not at them.

• When interacting with someone who has Tourette’s, don’t make assumptions; ask questions. It shows you care and want to understand. Just be sure to ask politely and at the right time, when they aren’t overwhelmed or in distress.

• Understand that many people with Tourette’s often need to suppress their tics for a period of time or in a certain situation, so if they disappear or take themselves out of the situation, be understanding and provide some sort of acknowledgement that you can see they are struggling: a kind smile should do it.

• 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 and they’re 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 then let them tell you what you can do.

• Do not film or take pictures of them. 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.

Tourettes Action provide a wealth of resources, advice and support for young people living with TS.

The Mix would like to thank Marley and Elliot for their invaluable contributions to this article, and Emma Mcnally for supporting The Mix in spreading awareness of TS.