Lucy Toghill on a widely-misunderstood neurological condition.

Gilles de la Tourette Syndrome, known more commonly as Tourette Syndrome, TS or Tourette’s, typically starts around the age of six or seven and tends to peak in early adolescence. It is a complex, genetically determined neurological condition of which the key features are tics, which are involuntary movements or sounds. A large number of people with the condition will also experience co-occurring features and conditions, such as OCD, ADHD and anxiety. Tourette’s is a life-long condition, but around half of adults report that their symptoms reduce following adolescence but will wax and wane throughout their life.

Research shows that 1% of the school age population have TS, and that at least 300,000 children and adults in the UK require support for the condition. A major issue for many is to receive a firm diagnosis confirming that they do indeed have TS, and a major activity for the future is to increase knowledge so that a diagnosis can be given.

Tourette’s is perhaps the most publicly misunderstood of all the neurological conditions, with many people thinking Tourette’s is a swearing condition which is behavioural. Although it is true that coprolalia, the clinical term for involuntary swearing, is a symptom of TS, it doesn’t affect everyone and it is not a criteria for diagnosis. It can however be one of the most difficult tics to manage, specifically in educational provisions. Many people see Tourette’s as comical and not that serious, when in reality it can be an extremely debilitating condition.

People with TS have both involuntary vocal tics (sounds) and motor tics (movements), which can cause embarrassment and great pain depending on the severity of the tic. There are also many hidden tics that people may not obviously see such as internal bodily tensing or a toe curling tic inside of a shoe, so it is important to remember that just because you cannot see someone ticcing does not mean that tics are not happening.

Most people with TS report experiencing pain due to the repetitive nature of tics. A small number of people cause themselves significant physical harm as a consequence of their tics. There is no specific medication for the cure or total control of TS. There are currently huge disparities across the country in terms of access to clinical care, with many finding it extremely difficult to access any medical treatment following diagnosis. Treatments use a variety of drugs to minimise the worst effects with varying degrees of success. Psychological treatments including CBiT (Comprehensive Behaviour Intervention for Tics) a tool that helps people with Tourette’s manage their tics.

In an educational environment, a child may feel the need to suppress their tics due to pressures on them to conform to typical rules of expected times of quiet, however this can be extremely uncomfortable for a student and could cause them a lot of pain. While some people may be able to suppress a tic for a short period of time, others are unable and we must not have an expectation to do so as this would be different in each child and is a personal choice. We must allow a student to let their tics out and normalise this for the student and everyone around them by means of educating both staff and peers on what tics are and ways to best support students with their tics. We must also bear in mind that whether a child is ticcing or suppressing a tic, it will be hard to concentrate and a massive contributor to one of the barriers to learning.

■ Suppressing a tic can cause discomfort.

General best practice strategies for both parents and schools is to firstly try to ignore the tics where possible, as long as the child is not involving or harming anyone physically or emotionally with their tics. We must remember that tics are completely involuntary and not the fault of the child and in no way an attempt at upsetting anyone. It is important that children are not sanctioned for their tics. One thing to bear in mind is that tics are suggestable so the more we focus on the tics, the more a child will tic, so another good strategy is to distract them from their tics. There will be factors individual to the child that will both increase or decrease their tics so it is important we talk with the child to recognise what these are. It is hard to stop the tics themselves but we can go back a step to look at any possible triggers that may be influencing their urge to tic.

Things such as tiredness, excitement, anxiety, stress, being too hot, being hungry can increase tics but these are individual to each person. Sensory and environmental factors can also heighten and increase tics, such as: the acoustics in a room, the lighting in a room, the temperature of the room, the feel of the touch of a table or chair or the smell of a room or someone else near them. It’s important to talk with the child to recognise some common triggers in order to avoid these or make adjustments around these. Any adjustments that are put in place to support need to firstly be agreed with the child to ensure they are happy with them. Things which can help are frequent movement breaks, ability to leave the class to go to a quiet, safe and private space to tic, the use of fidget and sensory toys and sitting close to the door of the classroom to allow them to leave quickly if needed.

One of the most important things, both at school and in the home, is to make sure the child or student has a good understanding of their tics and offer tools to best manage these and give support around their psychoeducation. In order to support a child’s mental health, we must make sure they feel supported, understood and accepted in both their school and home environments.

Lucy Toghill
Author: Lucy Toghill

Lucy Toghill
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Lucy Toghill is an experienced teacher and works as Education Manager at Tourettes Action. She has a son with Tourette Syndrome.


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