Kat Dyke – Tourette’s syndrome: facts and fictions

Gilles de la Tourette syndrome (TS) is a neurological condition which affects approximately 1% of the school age population. To put that into perspective, if Wembley stadium were full that would be 900 people, which makes TS far more common than most people believe.

People with Tourette’s syndrome have ‘tics’, which are involuntary and difficult to control. Tics can involve movements (motor tics) or sounds (vocal tics), and are highly varied. blogFor example, a tic could be a simple action like an eye blink, or it could be a sequence of complex movements and/or sounds. Some people are able to suppress their tics for a short amount of time, however, this can be uncomfortable (like trying not to blink, or hold in a sneeze). Suppressing tics can require a large amount of effort, which can make it difficult to concentrate on other things; it can also lead to a feeling of tics building up and may result in more occurring later on in the day. This can be particularly difficult for school aged children, and is one of the key reasons why raising awareness and understanding of TS is so important. It’s a myth that people with TS can just stop their tics, although some people with TS can supress them for a short amount of time this does not make them go away. However, for about 70-80% of people with TS their tics will naturally decrease as they get older [1].

Causes of Tourette’s syndrome

The exact cause of TS is not yet fully understood, but it does seem to run in families [2]. Most people with TS will have a close relative who also currently experiences tics, or has done so in the past. There are also specific regions of the brain which seem to be slightly different in people with TS [3], and there are differences in some types of chemical messengers known as neurotransmitters [4].

Finding the cause of TS is a difficult task, which is made more complicated by the fact that TS is a disorder which is often accompanied by other conditions. In fact up to 88% of people with TS will also have at least one other diagnosis such as Obsessive Compulsive Disorder (OCD) or Attention Deficit Hyperactivity Disorder (ADHD) [5]. Despite this advances in science (like improved brain scanning techniques) are helping us to understand how TS develops. Discovering the neurological basis of TS has been hugely important in disproving some previous myths about the condition, for example, that people with TS have unresolved underlying psychological conflicts or are possessed. Both of which are clearly untrue!

Tourette’s syndrome and swearing

A common misconception about TS is that it involves swearing or making inappropriate comments. While Coprolalia (the use of obscene or unacceptable language) is a type of tic associated with Tourette’s syndrome, only 10% of people with TS have it. Due to some of the media coverage of TS, and the distinctiveness of this type of tic, many people think that it is much more common.

Are tics serious?

Tics can seem humorous, but to someone with TS they are often a source of embarrassment and unwanted attention. It’s important to remember that tics are not intentional actions. They are involuntary and can be surprising, even to the person with TS. Tics can also be physically painful; this is because some tics may involve repetitive actions or self-abusive behaviours such as hitting or scratching. The majority of people with TS typically prefer their tics to be ignored; but there can be times when it’s ok to laugh. This will depend on the person and your relationship to them, but if in doubt ask what they are comfortable with. For an insight into the humorous and creative side of tics I strongly recommend exploring the world of Tourette’s Hero (Jessica Thom) and following her on twitter for insightful commentary about living the TS and for ‘daily outbursts’ likeAl Murray wants your vote more than he wants a tortoise”.

TS is a complex and multi-dimensional disorder which effects people worldwide. It can have a significant impact on quality of life in a number of areas, including in educational and social settings. These are areas in which a little understanding could go a long way in reducing stigma and misconceptions, and that can only be a good thing.

Kat Dyke (@kat_s_dyke) is a PhD student within the School of Psychology. (lpxksd@nottingham.ac.uk)

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If you’d like to find out more about TS please explore the following websites.

Tourette’s action: http://www.tourettes-action.org.uk/

NHS: http://www.nhs.uk/Conditions/Tourette-syndrome/Pages/Introduction.aspx

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[1] Bagheri, M. M., Kerbeshian, J. A. C. O. B., & Burd, L. A. R. R. Y. (1999). Recognition and management of Tourette’s syndrome and tic disorders.American family physician59(8), 2263-72.

[2] Lennington, J. B., Coppola, G., & Fernandez, T. V. (2015). Genetics of Tourette Syndrome. In Movement Disorder Genetics (pp. 169-189). Springer International Publishing.

[3] Felling, R. J., & Singer, H. S. (2011). Neurobiology of Tourette syndrome: current status and need for further investigation. The Journal of Neuroscience31(35), 12387-12395.

[4] Jackson, G. M., Draper, A., Dyke, K., Pépés, S. E., & Jackson, S. R. (2015). Inhibition, Disinhibition, and the Control of Action in Tourette Syndrome. Trends in cognitive sciences19(11), 655-665.

[5] Freeman, R. D., Fast, D. K., Burd, L., Kerbeshian, J., Robertson, M. M., & Sandor, P. (2000). An international perspective on Tourette syndrome: selected findings from 3500 individuals in 22 countries. Developmental Medicine & Child Neurology42(7), 436-447.

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