Tourette’s Syndrome – the facts and resources

A condition that is often misunderstood and that is sometimes seen alongside ASD or ADHD is Tourette's Syndrome. Often inaccurately characterised as sudden, unexpected outbursts of swearing, which is easy to be the butt of comedian's jokes, Tourette's is, in fact, a neurological disorder that can affect different people to different extents.

I was interested to learn more about it and I thought you might be too, so I asked Michelle Kelly, Groups Support Officer for Tourette's Action to write an article for Special Needs Jungle to explain exactly what Tourette's is and how it's treated.

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Tourettes Action – Who we are

Tourettes Action is the UK’s leading support and research charity for people with Tourette Syndrome (TS) and their families.

We want people with TS to receive the practical support and social acceptance they need to help them live their lives to the full.

What is Tourette Syndrome?

Lots of people have heard about Tourette Syndrome (TS) but there are still lots of misconceptions about the condition even though we are becoming increasingly more aware of it. Tourette Syndrome is an inherited neurological condition and although relatively rare, TS affects around one in every hundred school children and a total of around 300,000 adults and children in the UK. The condition is characterised by tics which are involuntary and uncontrollable sounds and movement. A common misconception is that people with TS tend to swear uncontrollably but in fact 90% of people with TS do not and their tics are manifested in other ways, whether verbal or otherwise.

The key feature of TS is that tics are uncontrollable and whilst they can be managed or supressed for a short amount of time they will eventually surface. Symptoms tend to present themselves at around about the age of seven and seem to peak at the onset of adolescence, between the ages of ten and twelve. Tics might start around the head and face and might involve blinking, for instance, or touching and jumping. Vocal tics tend to appear a little later on at around the age of eleven and might involve spoken words or sounds, but can also include coughing and sniffing.

There is huge variation in the nature of tics and the extent to which people with TS will experience them. Tics can change frequently and as one tic seems to disappear another may begin. The severity of the tics can change too and an individual may experience them to a differing degree throughout their lives. It is also thought that the tics can be made worse by stressful events and anxiety. If you would like more information about the causes of tics you can click on the link to our leaflet called what makes us tic?.

The good news is that for many children, the symptoms of TS disappear on reaching adulthood but for approximately half of people with TS, the symptoms will persist. Although the condition is chronic and long-lasting, it can be managed and does not have to impair an individual’s ability to live life to the fullest. Some have suggested that doing something as simple as concentrating on an absorbing task has helped to ease their symptoms a little, or even completely. What can make matters more complex, however, is that TS is also linked to other behaviours and co-morbidities such as Obsessive Compulsive Disorder, Attention Deficit Disorder and Autism Spectrum Disorders.

Managing Tourette Syndrome

Many people who have received a diagnosis of TS will not require medication to manage the condition and will not be significantly affected by their symptoms. There are medications that can help, although as is the case with any medication there are also possible side effects which must be taken into consideration. These medications can have success for some people, however, and so it is important to assess the impact on an individual basis. If you want to learn a little more about the kinds of medications that exist you can click on the link to our medications page where you will find lots of helpful information.

Psychotherapy can also help because it can provide practical ways for people with TS and their families to learn to cope with the symptoms of the condition and its impact on daily life. There are behavioural therapies that exist that can help an individual with TS to manage their tics so that they can become more socially acceptable, or in the event that they are causing pain, become less painful. You can find out more about behavioural therapies by visiting our behavioural therapies page.

There are plenty of relaxation techniques that can help to alleviate some of the stress that may be causing the tics or caused by them. The benefit each form of therapy will have will depend largely upon the individual and their own personal preferences but you can find plenty of useful information on our website or by visiting our forum to see what others have to say about their experiences of TS.

Get in touch to find out more

If you are a parent or carer of a child that you think might have TS and you would like to know who to get in touch with, we can provide you with a list of consultants in the UK. If you would like to know what support groups exist in your area then we would be happy to put you in touch. If you would like to contact Tourettes Action please click to visit our contacts page. You will also find plenty of information about events that are happening around the country and details about how you can get involved.

Useful Resources for Schools

Please find links below to our Key Facts for Teachers leaflet and a link to downloadable presentations on Tourette Syndrome that can be used in schools for teacher training and peer awareness.

http://www.tourettes-action.org.uk/storage/Tourettes%20Action%20-%20Key%20Facts%20for%20Teachers.pdf

http://www.tourettes-action.org.uk/ts-presentations

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Tania Tirraoro

Founder, CEO at Special Needs Jungle
Founder of Special Needs Jungle. Parent of two sons with Asperger Syndrome.
Journalist & author of two novels and a guide to SEN statementing. PR & social media expert. Rare Disease & chronic pain patient advocate.
Tania Tirraoro
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