The month of May marks Tourette’s Awareness Month, a reminder to raise awareness of what Tourette Syndrome is, to help educate people, and dispel the myths which can make life harder for those who have this, often very misunderstood, disorder.
What is Tourette Syndrome?
Tourette Syndrome is a neurological disorder (affecting the brain and nerves) that causes a person to make repetitive and involuntary movements or sounds, often referred to as tics. Whilst many people might mistakenly associate Tourette’s with involuntary swearing or saying inappropriate words, this only occurs in a relatively small number of people who have this disorder.
Contrary to this myth, tics can include a range of involuntary vocal and motor tics, including, but not limited to:
- Blinking
- Jerking head or limbs
- Whistling
- Grimacing
- Jumping
- Coughing
- Repeatedly saying the same word or phrase
- Coughing or clearing the throat
- Eye rolling
- Shrugging the shoulders
- Repeatedly touching objects
The urge to perform a tic can be intense, and the feeling is often compared to the urge we might have to cough or sneeze. Some individuals will try hard to control their tics for fear of embarrassment but these efforts can lead to the tics becoming worse and, quite simply, can be exhausting. It can take a lot of concentration to try and control a tic and a person with Tourette’s may be able to do this for periods of time (such as at school) but this often leads other people to assume the person is somehow in control of their tics, which is far from true. Take a moment to consider the concentration and effort it takes to keep your eyes open right now as you’re reading this and to stop yourself from blinking – it’s difficult and uncomfortable, isn’t it? This is how individuals with Tourette’s often describe the huge effort it takes to try and control the urge to perform the tics they have.
Sometimes, Tourette Syndrome is associated with Obsessive Compulsive Disorder (OCD) or Attention Deficit Hyperactivity Disorder (ADHD). Whilst Tourette’s falls in the spectrum of conditions known as ‘Tic Disorders,’ it is important to point out that the presence of tics does not necessarily mean a person has Tourette’s. For some people, the vocal and motor tics can be mild and not interfere too much with daily life, whilst for others, it can be truly debilitating, impacting relationships and putting young people at greater risk of isolation and bullying.
Most people who have Tourette Syndrome are diagnosed in childhood or in their early teens and, since it is a complex condition, it can be difficult to talk about. Yet, it is so important to help others to better understand this disorder since Tourette’s doesn’t define an individual. In fact, there are many famous people who struggled yet succeeded with their Tourette’s – Billie Eilish and David Beckham to name just a couple! There is so much more to an individual than their disorder and behind it all is a person with their own unique gifts and talents, with their own special strengths and skills, who is just as deserving of acceptance, and who just wants to be understood.
What help is available for young people who have Tourette Syndrome?
If you are concerned about whether your child might have Tourette’s your first point of contact will be your child’s GP who may refer them to a specialist consultant. Some individuals will experience tics severe enough to require medication, whilst for others, certain therapies can help them to better control the tics they experience. The Charity, Tourette’s Action, provides a wealth of information and guidance for parents and its link can be found at the bottom of this blog.
How does the work of the Youth Fairies support children with Tourette’s?
The tics and behaviours associated with Tourette’s can vary according to the situation a young person finds themselves in. Generally speaking, if an individual is in a situation where they feel more stressed, anxious, or tired then their vocal and motor tics will often become worse. Whilst there is no cure for Tourette’s, by supporting a child with Tourette’s to reduce their stress and anxiety levels and celebrate the other parts that make them who they are, they can learn to cope better with the disorder and the challenges of day-to-day life. Some of the ways Youth Fairies might do this is to:
- Improve feelings of calmness and general relaxation
- Improve quality of sleep
- Help children identify and better utilise their skills and strengths
- Reframe the problem so it can be seen as a part of life they can cope with
- Build resilience and confidence
- Help children become more aware of when their tics might occur so they can develop tools to deal with them and feel more in control
- Help reduce the frequency and severity of tics
- Develop a greater understanding of associated behaviours such as anxiety or OCD and feel more calm and in control in different situations
There are also ways you can support at home if you have a loved one who has this condition.
How can I support a young person I know with Tourette’s?
- Listen to them. There is so much to learn from listening to young people and the views they have about themselves and Tourette’s Syndrome. There are so many inspiring stories of young people who have risen above their challenges (and we see this same determination and resilience all the time here at The Youth Fairy!) and often the best expert advice we can receive is to listen to what our young people need. Encourage or support them to play an active role in determining how life can be made a little bit easier, whether that’s at school, at work, or in day-to-day life at home.
- Celebrate positive role models. Researching celebrities or inspirational people together, who may have overcome some of the stigma and challenges associated with Tourette’s, can be hugely empowering. If these people have succeeded, then they can too!
- Try to encourage your child to be open about their tics. High self-esteem and confidence happen when we begin to love and accept ourselves for who we are – not in spite of what makes us different, but because of it. A young person’s tics are just a small part of who they are and as they begin to learn to talk about them with others it helps to break the stigma that often surrounds them. Very often, others are unsure of how to react to an individual’s tics but when we get it out in the open it becomes just another part of that person and allows the other special and unique parts of them to shine through too – and, as we have already seen, a person is so much more than any condition or disorder.
- Offer acceptance and compassion. If you are a parent or close friend of a young person with Tourette’s this goes without saying, but this acceptance extends to everyone. Reassuring a young person they are not alone and not trying to change them or their tics sends the important message they are a special and valued person just as they are. Knowing how to respond when an individual has a tic can be hugely helpful here too. Ask the individual how they want you to respond when they have a tic. For some people, laughing together rather than ignoring a tic can be one of the most helpful things you can do – it all depends on the individual.
- Educate yourself about Tourette’s. As with all things, we are in a far greater position to support someone we know with Tourette’s if we better understand it. Even more, with greater knowledge, we can become advocates for our young people and challenge bias, negative views, or prejudice from others and help to spread greater awareness.
To find more information or guidance visit Tourette’s Action, a brilliant charity for raising awareness and offering support for those dealing with Tourette’s Syndrome:
