Let's learn about Tourette's syndrome

Let's learn about Tourette's syndrome

What is Tourette Syndrome?

Tourette Syndrome (TS) is an inherited neurological condition. It affects one school child in every hundred and is more common amongst boys. Over 300,000 children and adults are living with TS in the UK. The key features are tics – involuntary sounds and movements, which must be present for at least 12 months to meet the diagnostic criteria. Up to 85% of people with TS will also experience co-occurring conditions and features which might include Attention Deficit Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), and Anxiety. There's no cure for Tourette's syndrome, but treatment can help manage symptoms.

Symptoms of Tourette’s

The key features of Tourette Syndrome (TS) are tics; both repeated movements and sounds that are involuntary. Tics usually start in childhood around the age of six to seven years and tic symptoms often fluctuate in severity and frequency. Although the nature of tics is that they come and go, such patterns are also influenced by environmental factors including stress, excitement and relaxation. Tics can occur in nearly any part of the body and in any muscle; some individuals report of ‘internal tics’ such as deep abdominal muscle tension and ‘stomach tics’ The biggest misconception around TS is that everybody with the condition swears. Coprolalia is the clinical term for tics that produce socially unacceptable words; and only approximately 15-20% of people with TS have this symptom. Tic Attacks The term ‘tic attack’ is often used to describe bouts of severe, continuous, non-suppressible and disabling tics which can last from a few minutes to several hours. They often include whole body writhing movements, muscle tensing and shaking. Tic attacks can create a lot of anxiety for the individual experiencing them and their families.

Tics can be divided into Simple and Complex categories. Below is an example of common motor and vocal tics:

Simple: Motor tics- Eye blinking, Eye rolling, Grimacing, Shoulder shrugging, Limb and head jerking, Abdominal tensing,

Vocal tics- Whistling, Throat clearing, Sniffing, Coughing, Tongue clicking, Grunting, Animal sounds

Complex: Motor tics- Jumping, Twirling, Touching objects and other people, Obscene movements or gestures (copropraxia), Repeating other people’s gestures (echopraxia)

Vocal tics- Uttering words or phrases out of context, Saying socially unacceptable words (coprolalia), Repeating a sound, word or phrase (echolalia)


Physical and vocal tics can lead to pain and discomfort for some people.

Premonitory urge

Many individuals experience a physical sensation – a premonitory feeling/urge – that precedes a tic. It has been compared to other physical sensations such as the need to itch or sneeze, or a burning, electrical feeling inside. Supressing a tic can increase the premonitory urge, and once a tic has been performed the premonitory urge often reduces. For some people multiple attempts of a tic are necessary until it ‘feels right’ and the premonitory urge diminishes.

Can tics be controlled?

Although tics are involuntary, many people are able to suppress their tics for a short time. A helpful way of understanding this is to compare it to blinking. For a short period of time it is possible to keep your eyes wide open and avoid blinking – and with practice you will get better at doing it for longer – but eventually you will have to blink as the urge is too strong to control. Suppressing tics works in the same way. It can take a great measure of concentration – especially to begin with – to resist the urge to tic, but with practice a certain level of control can be applied. Some people will be able to suppress their tics more easily than others.

Causes of Tourette Syndrome

The cause of Tourette Syndrome has not been fully established but a lot has been learnt over the last 20 years. It is known as a neuro-developmental condition, as a vulnerability to having tics seems to develop as the brain is developing, although tics usually first appear at around the age of 5 (can be younger or much older than this).

The brain

Brain scanning in people with TS has shown that there are some parts of the brain that function differently or have a slightly different size e.g. some of the structures in the motor circuits that control movement. There is probably an imbalance in the function of brain neurotransmitters (chemical messengers in the brain that send signals between nerve cells) including dopamine, and probably others.

Genetic factors

Although tics often run in families there is not a single gene that causes TS or can be tested to diagnose it.

Environmental factors

It is likely that genetic make-up is not the only cause of TS. Other causes are called environmental, meaning that factors in the environment as the brain is developing may influence the risk of developing tics.

Getting diagnosed

A diagnosis of Tourette Syndrome (TS) can lead to greater understanding of the condition, access to healthcare, support networks and services. For TS to be diagnosed, multiple motor tics and at least one vocal tic must be present for at least 12 months. TS can only be diagnosed by observing and evaluating symptoms and there are rating scales to help with the assessment of tic severity. Some doctors may use an EEG, MRI, CT scan, or certain blood tests to rule out other conditions that might be confused with TS such as epilepsy, autism, dystonia and Sydenham’s chorea. A diagnosis provides a framework for understanding TS related actions and behaviours, not only for the individual but also the people around them (e.g. family, friends, teachers, employers). This level of understanding is the foundation to living with TS. A diagnosis can also provide access to support and health services and help avoid discrimination and misunderstanding.

Managing Tourette Syndrome

Behavioural therapies provide tools for helping a person learn ways to change certain behaviours. Cognitive therapies can also help a person to change the way they think about tics in addition to taking certain action. Medication can be used to help reduce the frequency and/or intensity of tics for a period of time. People in the TS community advocate the use of other approaches to help them manage symptoms, ranging from diet and exercise to complementary therapies. There is no scientific evidence to date that supports these theories, although researchers are beginning to look at lifestyle choices and the effect they have on a person's tics and general wellbeing. Neurosurgery - there have been trials in the UK and internationally for treating very sevre TS which has been resistant to all other means of treatment and management, with Deep Brain Stimulation (DBS), a type of neurosurgery. The use of DBS in patients with very severe TS is still in its research stages, and although results have been hopeful, it is still not clear whether this will become an available treatment option.




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