https://www.gosh.nhs.uk/wards-and-departments/departments/clinical-specialties/department-child-and-adolescent-mental-health-dcamh/the-tic-service/help-explaining-tourette-syndrome-to-others/
Explaining Tourette Syndrome to others
Tourette syndrome (TS) can sometimes mean having tics that are noticeable to others. People might ask you about the sounds you make or movements you do. This page provides advice about how to deal with these situations.
Telling people
You might need to start by explaining what a tic is or about Tourette syndrome. For instance, 14-year-old Joe explains his tics like this: “Tourette syndrome affects my brain and makes me have tics. My tics mean I do certain things and make certain sounds. The tics can change – sometimes they’re obvious and sometimes you can’t see them at all. I can’t control my tics for very long and I don’t mean to do them. Anyway, my tics are just part of me!”
It often helps to explain why you are making tics (sounds and movements). You might want to explain that these are tics and that most of the time they ‘just happen’. It can be helpful to let people know that you cannot control your tics. Remember that you are the expert, and that other people can benefit from your knowledge. It might help them understand what tics are, and help them not to stare or comment when they next see someone who has tics.
Having an answer ready
Some young people use a ready-made answer to respond to (or avoid) questions about their tics. You might find it helpful to have your answer written on a card - there’s an example on our resources page - or stored in your mobile phone, so that you do not have to remember it all. What you say is up to you. Think about what you would like to say and discuss it with your family. They might have some ideas as well.
Classmates
If you feel comfortable talking with your classmates about tics, this can be a good place to start. They spend a lot of time with you and might have wondered about your tics. You could talk to them about them yourself or ask the teacher to bring it up, whether you are there or not. Either way, your teacher will appreciate your help in explaining your tics to your classmates.
Famous people with Tourette Syndrome
Did you know that lots of famous and successful people have TS? Here are a few examples:
Tim Howard is a famous former footballer with TS. He was the goalkeeper for Manchester United and Everton, having started to play football in the United States. In his first season with Man Utd, he was voted best goalkeeper in the Premiership. He was diagnosed at the age of ten but refused to let it get in the way of his ambitions. As Tim puts it: ‘Never let TS be a stop sign – it’s just a speed bump, another obstacle to overcome.’ He also set up a special academy in the US called the New Jersey Center for Tourette Syndrome & Associated Disorders. You can access the website here.
Billie Eilish is an American singer who in 2020 became the first woman and second overall artist to win the ‘Big Four’ categories at the Grammys; Album of the Year, Record of the Year, Song of the Year and Best New Artist, as well as Best Pop Vocal Album. Billie first spoke out about her tics in 2018 and shared that she was diagnosed with Tourette syndrome at the age of 11. Look where she is now - her tics certainly didn’t get in her way!
David Beckham is one of the most successful and well-known footballers in the world. Over the years he has played for Preston North End, Manchester United, Real Madrid, AC Milan, Paris Saint-Germain, LA Galaxy, and the England national team. He also holds the record for the number of played matches for England. David is one of the many famous people who have been diagnosed with Tourette syndrome and has suspected OCD. Tics definitely do not define David - they are just a part of him. They also didn’t get in the way of all those trophies!
Tic Explanation Card
This is a short card you can use to help explain Tourette syndrome and your tics. Feel free to personalise this card and carry copies around with you.
So, in short...
- Tell people about your TS and tics if you feel comfortable.
- Think about explaining it to your classmates or ask your teacher to do it.
- Have an answer ready.
- Remember, having TS didn’t stop Tim Howard from becoming an extremely successful footballer or Billie Eilish from becoming an amazing musician!