FAQ

What is Tourettes?

Gilles de la Tourette syndrome (Tourettes) is a neurological condition. It’s estimated to affect more than 300,000 children and adults in the UK, and I’m one of them. ‘Tics’ are a key feature of Tourettes - these are the involuntary and uncontrollable sounds and movements people with Tourettes make. The sounds are called vocal tics and the movements are called motor tics. Tourettes is three times more common in males than it is in females.

What causes Tourettes?

The cause of Tourettes isn’t known, but current research indicates it involves a part of the brain called the basal ganglia and a dysfunction of the neurotransmitters (chemical messengers in the brain). There’s strong evidence to suggest it’s an inherited condition. There’s at least one other person in my close family who has tics.

Why do people with Tourettes swear?

Most people with Tourettes don’t swear. This aspect of Tourettes only affects 10% of people who have it. There’s Coprolalia and Copropraxia, and I have both.

Coprolalia means using obscene or unacceptable language.
Copropraxia means making obscene or otherwise unacceptable movements or gestures.

Are you possessed?

Believe it or not, I’m asked this fairly regularly. Some people think the movements and noises of my tics are an indication that I’m possessed by a demon. The simple answer is no, I’m not. I usually respond to this question by asking why an evil spirit would make me shout about squirrels and biscuits.

How is Tourettes diagnosed?

For Tourettes to be diagnosed, multiple motor tics and at least one vocal tic must be present over a period of a year without a break of more than three months. I tic thousands of times a day and they’re very noticeable.

Observing and evaluating the symptoms is the only way to diagnose Tourettes, but there are rating scales to help assess the severity of people’s tics.

What treatments are available?

While there’s no cure, there are some treatments available that can help control the symptoms.

There’s a wide range of drugs, which includes anti-psychotics, anti-hyperactives and anti-depressants, but none that have been developed specifically for Tourettes. Individuals react differently to different drugs and while they may be successful for some people, they don’t work for everybody, and can have undesirable side effects.

Other types of treatment include behavioral therapies like Habit Reversal Therapy (HRT) and Comprehensive Behavioural Intervention Therapy (CBIT). These aim to improve people’s awareness of their tics and teach alternative movements that have less impact. Research from the US published in 2010 showed that behavioral treatments can be as effective as drugs in managing the symptoms of Tourettes.

Deep brain stimulation has also been used to treat Tourettes. This is a neurosurgical procedure that places a stimulator in the brain. It’s used to treat other movement disorders such as Parkinson’s and is currently being trialled in the UK for Tourettes.

Is Tourettes associated with any other conditions?

Over 85% of people with Tourettes have more than just tics. Common additional conditions, known as co-morbidities, include: Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD). For some people, co-morbidities may present more problems than the tics themselves even if they’re less visible. I don’t have a diagnosis of OCD but I do have some obsessive and compulsive behaviour.

What are tics?

Tics are chronic (long-term) repetitive and involuntary sounds and movements. It’s possible to suppress tics for a while, but eventually they have to be let out. I often tell children this is a bit like how it feels if you try not to blink. Tics usually start in childhood around the age of seven. For some people symptoms disappear as they get older, but for many Tourettes carries on into adulthood.

Tics can be as simple as blinking, grimacing or coughing, or as complex as jumping or uttering complete phrases.

Tics can be experienced in lots of different ways by the same person. They can change over time and get more or less intense in different situations. Some people find their tics reduce during absorbing activities. I sometimes tic less when I’m concentrating on drawing or when I’m swimming. Changes in tic severity and frequency are unpredictable and this is part of the challenge of living with Tourettes.

What do tics feel like?

People with Tourettes describe what their tics feel like in different ways. For me, different tics have different sensations. Some feel like I’m being yanked from the inside, others are more like a pressure building up that needs to be released, like a sneeze. Both of these feel like they’re happening in a particular part of my body. The worst ones affect the whole of my body and feel like all of my insides are itching and can’t be scratched.

What’s a motor tic?

Motor tics are involuntary movements. These can include blinking, shrugging, jumping, twirling, head jerking, leg bending, eye rolling, grimacing and many more. Sometimes motor tics can make everyday activities like walking or cooking extremely difficult. I bang my chest hundreds of times a day so I wear padded gloves to protect my knuckles.

What’s a vocal (or phonic) tic?

Vocal tics are involuntary noises or words. These can include whistling, squeaking, sniffing, coughing, yelping, screaming, uttering words or phrases – and for some people, swearing. When I’m talking to people, my vocal tics can interrupt so much it makes it difficult for me to express myself. Sometimes though, they’re extremely funny and that’s what’s inspired Touretteshero.

Why do certain words become tics?

It’s a mystery. Tics vary greatly from person to person but any movement, word or sound can become a tic.

Are tics saying what you’re thinking?

No. To describe Tourettes as saying what you’re thinking would be over simplifying it. Most tics are totally random. This doesn’t mean they’re never triggered by what’s going on around you, because sometimes they are. Tics tend not to be related to the actual thoughts or feelings of the person who has them.

Tics can sometimes involve saying the most inappropriate thing in a situation: for example, making a comment about someone’s appearance or giving away a secret. I sometimes catch myself shouting out my pin number when I’m using a cash machine.

Do tics hurt?

This is a difficult question to answer. The sensations that trigger tics can be very uncomfortable – particularly if I try and hold them in. And the consequences of ticcing can be painful too, like when I bang my chest or head butt a table. The same tic can hurt more or less depending on where I am. For example, dropping to my knees on a carpet hurts a lot less than on concrete.

What is a 'Ticcing Fit'?

A ‘ticcing fit’ is the term I use to describe a distinct period of overpowering and constant motor tics. The ‘fits’ generally last between 10 minutes and an hour, although the longest was just over three hours and required emergency treatment in hospital. During these ‘fits’ all parts of my body may move, shake, contort or lock into painful positions. Most of these episodes are accompanied by a distinct repetitive noise that sounds like the word, “How!”

My ‘fits’ look a bit like an epileptic seizure but there are some key differences. I stay fully conscious and know what’s happening around me, and although I can’t always speak I can usually communicate in some way with whoever’s helping me. Most of the time my ‘fits’ can be managed with the help of a friend or support worker. At all times I carry an emergency bag containing my medical information, my medication and the protective clothing I need for when they occur. They can happen at any time of the day or night, and without someone being with me I’m very likely to injure myself. I’m currently having about eight of these ‘fits’ every day.

Although they can be exhausting and put a huge strain on my body, once they’ve stopped I’m fine immediately afterwards and can carry on with whatever I was doing.

What are Echophenomena?

These are specific types of tic that involve echoing or repeating sounds, words or movements.

Echolalia means repeating other people’s sounds or speech.
Echopraxia means repeating other people’s gestures or movements.
Palilalia is similar to echolalia but involves someone repeating their own sounds or speech.

What do you do when people stare, laugh or make comments?

People with Tourettes deal with other people’s reactions in different ways. Most people I meet are friendly and understanding about Tourettes. When people respond less positively and laugh, stare, or make negative comments, I challenge them and do my best to explain. This can often lead to a change in their attitude, and I’ve had many great conversations that have started this way. There will always be some people who don’t change their attitude or continue to be mean and sometimes aggressive. In these situations I ignore their behaviour and try not to get upset or angry myself.

Do you ever say stuff on purpose and pretend you didn’t mean to?

This is something people with Tourettes are often accused of. I can’t speak for anyone else, but I’ve never claimed something was a tic when it wasn’t. Tics tend to sound different from my normal speaking voice and most people who know me can tell the difference without needing to ask.

Does having Tourettes affect the way you sleep?

Tourettes can have a big impact on how well somebody sleeps. Tics make it hard for me to stay still and quiet enough to get to sleep. Staying asleep can also be difficult. While most people don’t tic in their sleep, mine often wake me up in the middle of the night. I use a weighted blanket to help me stay as still as I can.

How do you manage at work?

People with Tourettes do all sorts of different jobs and how they manage depends on their individual circumstances. I’m open and honest about my tics with my employer and colleagues and they give me a lot of support. I always explain that I have Tourettes to new people I meet at work and tell them it’s fine to ask questions about it. I also get help from Access to Work, which pays for the support that disabled people in employment may need to do their jobs. For me, this scheme pays for the majority of my travel costs to and from work, and for a personal assistant to help me while I’m there.

Are there any things you don’t do because you have Tourettes?

Tourettes can easily become a socially isolating condition. For me, it’s important that I don’t let it dictate the sort of activities I’m able to enjoy. I do this by making sure I plan carefully and have the right support when I do stuff. Having lots of close friends is important to me too.

Sometimes I change how I do practical things to make sure I stay safe and there are only a few things I don’t do at all, like using sharp knives or tools, or carrying breakable objects.

Do you prefer people to ignore or acknowledge your tics?

My personal preference is for people to respond openly to my tics. Tourettes isn’t funny but lots of tics are. If I say something that’s particularly surreal or shocking, I’m happy if people acknowledge it. Most of the time though, I prefer my tics to be ignored. Lots of people tell me once they’ve got used to them they’re able to tune them out altogether. If I need practical help because of a motor tic I’ll ask for it and I’m always happy when people offer to give me a hand.

What are the aims of Touretteshero?

Main Aim:
To celebrate and share the creativity and humour of Tourettes in an accessible way, with the widest possible audience.

Objectives:
To increase awareness of Tourettes and its challenges without self-pity or mockery.

To take ownership of the laughter associated with Tourettes in order to provide a genuinely funny cultural alternative.

To suggest informal ways of dealing with the challenging social situations that people with Tourettes often face.

To run innovative events for children and young people with Tourettes that focus on the value of play, interaction and social inclusion rather than any associated ‘problems’.

How can I get involved with Touretteshero?

There are lots of ways to get involved with or support Touretteshero:

Get creative and make art in response to a tic and share it with us. Will your work be good enough to become Image of the Week?

Read, comment on, and share the blog. It covers many aspects of life with Tourettes from the funniest moments to the most challenging. Read it, enjoy it, reflect on it and tell other people about it.

Buy Touretteshero merchandise or make a donation. We’ve got some exciting products available with more being added all the time. Any profit will fund creative events for children and young people with Tourettes and help sustain the project as a whole.

Follow or Like Touretteshero on Twitter and Facebook.

Why do you include rude and offensive tics on the site?

This project aims to raise awareness and understanding and although most people with Tourettes don’t have offensive tics, I do! I don’t censor them because leaving them out would be editing out a part of my disability. If you don’t want to see any potentially offensive content you can switch to SafeMode.

What is SafeMode?

Touretteshero provides the SafeMode feature to allow you to filter out explicit ‘adult’ content if you choose to.

Why can’t I add my own tics to the site?

All the tics featured on this site are things I’ve said over the past few years. We don’t include other people’s tics because there’s no way of validating their authenticity. Some people who don’t have Tourettes use it as an excuse to make cheap jokes, and it’s important that everything we feature is genuine. While you can’t submit your own tics, you can contribute to the site by creating art in response to any tic you like or leaving a comment in the blog.

Do you ever remove comments from the blog?

We’ll remove any comments that we consider to be abusive or inappropriate. We may also remove comments that aren’t in keeping with the spirit of the project. You can read our Terms and Conditions here.

How do I submit a picture to the gallery?

Find a tic that tickles your fancy, use your imagination to create a great work of art, and share it with us. Once you’re feeling inspired, sign up and get creating. When you’re ready, click the 'Upload an image' link on the tic you've chosen.

What you create is totally up to you – drawings, paintings, photos, illustrations or anything else at all. They should be your own unique response to the tic you’ve chosen.

We can use: JPG, GIF, or PNG. Images will be resized automatically but should not exceed 3MB in size.

Where’s My Picture?

To make sure that any pictures you post on the site follow our terms of use, we’ll check them before we put them up. This is usually a quick process, but if we get a lot of images at the same time it might take a little longer.

If there’s a problem with a picture you’ve uploaded we’ll email you and let you know. Otherwise just keep checking the gallery and it’ll be there soon.

Where’s My Comment?

To make sure that any comments you leave on the site are appropriate and follow our terms of use, we’ll check them before they get posted. This is usually a quick process but if we get a lot of comments at the same time, it might take a little longer.

All feedback is welcome, but we have to make sure it’s not abusive or just spam. No one wants that!

I’m having trouble accessing content on the website. What should I do?

Check that you’ve got SafeMode set how you want it and make sure your browser is accepting cookies for our site. If you’re still having problems, contact us.

My child has Tourettes, how do I sign up to be notified about your events?

The events page will keep you up to date with forthcoming Touretteshero events, activities and parties. If you have any questions you can contact us.

What support is available for people with Tourettes and their families?

Tourettes Action is the national charity that supports people with Tourettes and their families in the UK. It’s a great source of advice and support and they’ve got a telephone helpline in addition to their website.

What should I do if I think I, or someone I know has Tourettes?

I’ve had tics since childhood, but it took me a long time to seek out a medical opinion. My parents worried about people labelling me or discriminating against me, and were reluctant for me to be formally diagnosed. But I’ve never regretted seeking help with understanding something that’s been a big part of my life for as long as I can remember. The diagnosis has meant I’m able to access the support I need to manage my tics and reduce their impact. To find out more about my personal journey read this post.

My advice for anyone who thinks they or someone they know has Tourettes would be:

Read up on Tourettes – a good place to start would be the Tourettes Action website.

If it’s appropriate discuss your thoughts and concerns with your friends and family.

Speak to your GP and ask for a referral to a specialist neurologist. You can ask Tourettes Action for a list of UK consultants.

Be persistent and remember that your GP may not be as familiar with Tourettes as you are.

It helps to keep a record of all vocal and motor tics. Some people find keeping a video diary is useful.

Living with Tourettes has many challenges, but with the right support, understanding and encouragement, these can usually be overcome. While it can be difficult, having it has made me a more empathetic, resilient, confident and articulate person. If you are diagnosed with Tourettes you’ll be in good company and this is the place to be.

About Tourettes