‘Tourettes’ is not a swear word

Tic syndromes, including Tourette syndrome, are conditions that children can learn to live with, according to a new book from Great Ormond Street Hospital (GOSH).

Imagine you’re a 10-year-old boy who makes small, quick movements and sounds that you cannot help. They occur everywhere and at any time – most days regardless of whether you are at school, home or football practice.

It’s a challenging situation. However, according to a new book co-authored by a psychologist from GOSH, Tourette syndrome is a condition that shouldn’t be feared and one that children can learn to live with.

Don’t make assumptions

“Tourette syndrome is really quite common, affecting approximately one in every hundred children. A lot of children have very mild versions of the condition, which are referred to as tic disorders.”

Dr Tara Murphy (pictured below) is a consultant psychologist at GOSH and co-leads the Tourette syndrome clinic with Professor Isobel Heyman. The clinic is one of the largest in the country and offers assessment and treatment to many children with the condition. Tara has worked in the clinic since 2003 (the clinic has been at GOSH for closer to 20 years) and is passionate about raising awareness of the condition and expelling some common myths.

“Understanding Tourette syndrome is really important. Understanding symptoms, how they wax and wane and change with time is important. Tics vary from one person to the next and can affect people in different ways.

“The typical onset of Tourette syndrome is about age six to eight years and usually starts with eye blinking, head jerking or facial grimacing,” says Tara. “Usually within two or three years, the child will develop vocal tics such as sniffing, throat clearing and/or grunting. A small group of children will have word tics (complex vocal tics). Swearing tics (coprolalia) actually aren’t very common, occurring in about 10 per cent of people with Tourette syndrome.”

The condition tends to run in families and like most brain-based conditions, boys are more vulnerable than girls.

“There seems to be an interaction between a genetic element and early birth factors that contribute to developing Tourette syndrome,” says Tara. “This could be difficulties during delivery at birth, smoking during pregnancy or experiences later on in life such as the child having a throat infection. Once you have developed tics, tiredness and everyday stressors like exams tend to exacerbate symptoms but again the pattern is different for each child with the condition.”

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Novel treatment

Tara’s role at GOSH has focussed on developing the delivery of behavioural treatments for patients with Tourette syndrome, which is an area that was neglected until the past 10-15 years, even though Tourette syndrome has been recognised for a long time (since the 1880s in fact).

“What we’ve been doing is developing treatment in novel ways. There are two main models: Habit Reversal Training and Exposure with Response Prevention, which both get the child to zone in on the urge that a tic is about to come, and then they suppress the tic or perform an action so the tic can’t come out.”

The key element of treatment is to keep controlling or suppressing the urge until it goes away and then the tic does not occur. For many children, before the tic comes out, they get a feeling, an urge or ‘tickle’, which allows them to control the tic.

Tara explains: “’Habit Reversal Training is the intervention that has the most evidence. You get the child to describe the tic that bothers them the most in detail and then they focus on the urge that tells the child that the tic is about to emerge. With Habit Reversal Training, when they get that feeling, they use an action called a ‘tic blocker’ to prevent that particular tic from happening.

“For example, if a child had an eye blinking tic, which is the most common motor tic, instead of blinking the child focuses their eyes and uses a deliberate and controlled blink, maybe every five or six seconds – the ‘tic blocker’ – until the feeling goes away, thus controlling the tic.

“The second technique is Exposure with Response Prevention, which is about focusing on the urge and instead of giving into the sensation, using their focus to hold it in. What is found is that the child manages to control the tic for longer periods and eventually the need to tic extinguishes and goes away.”

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Tara’s book, Tic Disorders – A Guide for Parents and Professionals, covers these techniques and more while also educating and raising tic awareness for parents, GPs and other non-specialist audiences.

“My co-author, Dr Uttom Chowdhury, worked in the GOSH clinic many years ago and wrote a similar book, but the world of Tourette syndrome has moved on since the early 2000s. Behavioural therapy for tics is a more validated and widely available treatment now. Our understanding of the condition has progressed in terms of supporting children at school or at home so we felt it was a good time to look at the recent research in Tourette syndrome, revisit the book and provide something up to date and accessible.”

Understanding tic disorders

Understanding Tourette syndrome is a key goal for Tara – knowing what tics are, that they regularly change and that they come and go. “It’s about helping a child live with tics,” says Tara. “What tends to happen, is when you’ve had a course of treatment (either with medication or behavioural intervention), tics reduce by about 30 to 40 per cent. Behavioural treatment is not a cure but it does give the children a strategy they can use in places where they want to have fewer tics – like in assembly at school, performing on stage or in an exam.”

Tara summarises: “Parents tend to worry about bullying of their child at school but I think that if you can equip the child with a good explanation and a good awareness, tics shouldn’t stop them from doing anything they want to achieve.”

Find out more information on Tourette Syndrome and the GOSH clinical outcomes.

Read more about Tara’s book and visit the Tourettes Action website for more information on the syndrome.

Illustration by Daniel Battams.