A few weeks ago I was interviewed by a journalist from The Times interested in finding out about people’s reactions to being told they had Tourettes. He’d been inspired to do this by the experience of a colleague whose child was in the process of being diagnosed.
Misconceptions about Tourettes are very common, with many people feeling there’s a stigma attached to having the condition. This can create an additional layer of worry for people with Tourettes, for their parents, and even for the doctor making the diagnosis.
To be diagnosed with Tourettes a person must have had multiple motor tics and at least one vocal (or phonic) tic for at least a year. Tics impact on each person differently and in some cases they won’t be evident to other people at all. This was true for me – when I was younger many of my tics went unnoticed.
The biggest Tourettes myth is that it’s all about swearing. In fact, only 10% of people with Tourettes have coprolalia, or involuntary swearing. The 90% who don’t swear constantly have to explain this and I’ve heard many accounts of parents being told their child can’t have Tourettes because they don’t swear.
Because of these myths some parents are wary of getting a formal diagnosis. I’ve even heard some doctors are reluctant to diagnose Tourettes or prefer to use other names for it, for fear a child will be held back by other people’s prejudices. While I understand the root of these concerns, avoiding a diagnosis or using another name isn’t the answer – it’s not going to change the child or their tics. What we can all help to change are the misconceptions about Tourettes, and about disability more generally.
I spent years unable to understand why I moved, made noises and sometimes behaved in unusual ways, and I’ve never regretted being diagnosed so I could learn about something that’s always been a big part of my life. Diagnosis was also a crucial step in enabling me to explain to other people what was happening. With Tourettes, clear communication is key.
If I were raising a child with Tourettes I’d want them to know:
• It’s not their fault and they haven’t done anything wrong.
• There’s no need for them to be embarrassed or try to hide their tics.
• It’s OK for them to other people about what they’re experiencing.
• If some adults tell them off for ticcing it’s because they don’t understand and need to learn more about it.
• It’s good for them to ask questions and to ask for help whenever they need it.
• Lots of adults with Tourettes say their tics have helped make them kinder and more caring people.
• They shouldn’t put off doing things they want to do because of their tics – instead, they should look for ways to make them happen.
To parents raising a child with Tourettes I’d say:
• Try not to worry about the future too much, making sure your child feel comfortable in the present is much more important.
• Swearing tics are not the end of the world.
• Being open with your child and with other people may sometimes feel tough but it’s much better than risking your child feeling their tics should be kept secret or that they embarrass you.
• Look for ways to support your child to feel confident about explaining their tics.
• Many aspects of Tourettes are always a mystery so expect to be confused.
• Have high expectations of other people and if they don’t meet these, challenge them.
• Talk to other people with Tourettes and to other parents of children with Tourettes. You can do this on Facebook groups, forums and at group meetings.
• The most important thing in managing the challenges presented by tics is having the love, support and understanding of family and friends.
• Pop the SafeMode on and show your child this site.
To doctors and other professionals supporting people with Tourettes I’d say:
• Remember that everyone with Tourettes is different.
• Listen to the challenges individuals face and respond as holistically as you can.
• Ask questions and avoid making assumptions.
• Be aware of the misconceptions and fear associated with Tourettes but don’t let it affect your decision-making
To everyone else who’s interested in Tourettes I’d say:
• Have a good root around this site.
• You can read about my experiences in the daily blog or in my book Welcome to Biscuit Land – A Year in the Life of Touretteshero.
• Check out the FAQ’s.
• Laugh at thousands of tics.
• Explore the amazing tic-inspired artwork in the gallery
• Get involved by illustrating a tic, posting a comment or buying something from the shop.
• Help spread the word about the site on Twitter and Facebook
• Consider making a donation to help us run more innovative events for children and young people with Tourettes.
• Help us ‘Change the world one tic at a time.’