What is Tourette syndrome?
Tourette syndrome, also called Tourette's, is a neurological condition that causes you to make sudden, repetitive sounds or movements. These are known as tics. Tics can range from simple movements or noises, such as blinking or throat clearing, to more complex movements or phrases.
Around 300,000 people have Tourette’s in the UK, and one in a hundred school children are diagnosed between the ages of three and nine. In the majority of cases, Tourette’s runs in the family. It is also closely associated with attention deficit hyperactivity disorder (ADHD) and obsessive-compulsive disorder (OCD).
In the video below, Psychotherapist, Counsellor and Behavioural Therapist Kerrie Hipgrave, MBACP Accred from Safe Talk Counselling explains more about how counselling can help support those with Tourette syndrome.
Tourette’s symptoms
The main symptoms of Tourette syndrome are involuntary movements and sounds, known as tics. Tics usually begin in childhood, often between the ages of five and 10, and tend to become most noticeable between the ages of 10 and 12. For many people, symptoms improve during their late teens or early adulthood, although some continue to experience tics into adulthood.
Tics are usually described as either motor (movement) or vocal (sound). They can also be classed as simple or complex, depending on how many muscles or actions they involve.
Simple vocal tics
Simple vocal tics involve brief sounds, such as:
- coughing
- throat clearing
- sniffing
- squeaking
- grunting
Complex vocal tics
Complex vocal tics involve longer or more meaningful sounds and phrases. These may include:
- repeating words or phrases
- repeating what someone else has said (echolalia)
- involuntary swearing (coprolalia), although this affects only a minority of people with Tourette syndrome.
Simple motor tics
Simple motor tics involve quick movements using one muscle group, such as:
- blinking
- head jerking
- neck twisting
- eye rolling
- teeth grinding
Complex motor tics
Complex motor tics involve a series of movements or actions. These may include:
- jumping
- hitting or kicking objects
- copying another person's movements (echopraxia)
- making gestures
- touching objects or people repeatedly
Premonitory sensations
Before a tic, those with the condition may experience an unusual or uncomfortable feeling. These feelings are known as premonitory sensations and will continue until the tic has stopped. Premonitory sensations can include:
- a dry or sore throat
- itchy joints
- muscle tension
- burning sensation in the eyes
What can affect Tourette's symptoms?
Tics often vary throughout the day and can become more noticeable in certain situations. For some people, stress, anxiety, excitement, illness or tiredness may increase the frequency or intensity of their tics. Others may find their tics lessen when they are deeply focused on an activity they enjoy, such as reading, playing music or taking part in sport.
Some people with Tourette syndrome are able to temporarily suppress their tics, particularly in situations where they feel self-conscious or under pressure, such as at school or work. However, suppressing tics can require a great deal of concentration and may feel physically or emotionally exhausting.
Many people describe experiencing a strong urge to tic after suppressing their symptoms for a period of time. Once they are in a place where they feel safe or relaxed, they may find their tics become more noticeable again. Some people also experience periods of intense or prolonged ticcing, sometimes referred to as 'tic attacks', although not everyone with Tourette's experiences these.
Associated features and co-occurring conditions
People with Tourette's are likely to show signs of other conditions commonly associated with the syndrome, including:
Echolalia (repeating others’ words)
Echolalia is the echoing or repetition of words made by another person. It can appear in two forms - delayed echolalia and immediate echolalia. Delayed echolalia can happen hours, days or even weeks after the original sound was heard. Immediate echolalia, however, is when the words or phrases are repeated almost straight away after they were heard.
Echopraxia (repeating others’ actions)
Echopraxia is similar to echolalia, but instead of repeating words, you may repeat the physical actions of others.
Palilalia (constantly repeating a phrase)
Palilalia is similar to echolalia, but you may repeat whole phrases rather than specific words over and over again.
Learning difficulties
Tourette syndrome does not affect a person's intelligence, but some children and young people may find learning more challenging. Frequent tics, difficulties concentrating, or co-occurring conditions such as attention deficit hyperactivity disorder (ADHD) or obsessive-compulsive disorder (OCD) can sometimes affect school life and academic progress.
Some children may benefit from additional support at school, particularly if their tics make it difficult to concentrate, write, complete tasks or participate comfortably in lessons. With the right understanding and support, many children with Tourette syndrome are able to thrive both academically and socially.
Emotional and behavioural challenges
Some people with Tourette syndrome may experience challenges with emotional regulation or behaviour, particularly if they also have co-occurring conditions such as ADHD or OCD. For example, they may become frustrated more easily, have difficulty managing strong emotions or find it harder to cope in stressful situations.
Support such as behavioural therapy, counselling or other appropriate interventions can help people better understand these challenges, develop coping strategies and manage the impact they have on daily life.
What causes Tourette’s?
The causes of Tourette’s are not yet fully understood. Researchers believe it develops as a result of a combination of genetic and environmental factors that affect how the brain develops and functions.
Tourette's often runs in families, suggesting that inherited genes play an important role. However, not everyone with a family history of Tourette's will develop the condition, and some people are diagnosed without any known family history
Diagnosing Tourette syndrome
Speaking with your GP is the first step towards getting a diagnosis of Tourette's. If you or your child has had tics since before the age of 18, for a year or more, and they involve both sounds and movements, your GP may refer you to a specialist for further assessment if they think Tourette syndrome could be causing your symptoms.
Counselling and support for Tourette syndrome
Treatment for Tourette’s can help those affected better manage symptoms, making daily life easier. Although Tourette’s is not a psychological disorder, counselling sessions can help people cope with additional social and emotional issues that can result from the condition.
They may have to deal with bullying and labels such as lazy, stupid, naughty, immature and strange. This can result in low confidence and low self-esteem, loneliness and depression. There may be anxiety and frustration around managing daily activities and distress associated with feeling different and a failure.
- Paula Newman - MBACP (Senior Accred) Counsellor / Supervisor - Counselling for dyspraxia, dyslexia and related conditions.
Behavioural therapy
Behavioural therapy is one of the main treatments recommended for Tourette syndrome. Rather than trying to stop tics altogether, behavioural therapy helps people become more aware of their tics, recognise the urge to tic, and develop strategies to manage them.
Comprehensive behavioural intervention for tics (CBIT)
One of the most effective approaches is Comprehensive Behavioural Intervention for Tics (CBIT). CBIT combines several techniques, including habit reversal training (HRT), relaxation strategies and identifying situations that may make tics more noticeable.
Habit reversal training (HRT)
Habit reversal training helps people recognise the early urge to tic and practise a competing response until the urge passes. A competing response is a voluntary movement that makes it more difficult to perform the tic while remaining comfortable and discreet.
Exposure and response prevention (ERP)
Exposure and response prevention helps people gradually become more comfortable with the urge to tic without immediately responding to it. With the support of a trained therapist, people learn to tolerate these sensations for longer, which may help reduce the impact tics have on everyday life.
Medication
There are a number of medications that may support those with Tourette’s. These are typically prescribed if behavioural therapy hasn't helped. Your GP will advise what medicine to take if it’s the right course of action.
Living with Tourette’s
Everyone's experience of Tourette syndrome is different. For many people, tics become less frequent or less severe during late adolescence or early adulthood. Others continue to experience tics throughout adulthood, although symptoms often change over time.
Living with Tourette's can sometimes be emotionally challenging, particularly if tics affect confidence, relationships, education or work. While there is no cure, the right combination of support, treatment and coping strategies can help many people manage their symptoms and improve their quality of life. Counselling may also help people process difficult emotions, build resilience and develop strategies for navigating everyday challenges.
Self-help tips for managing tics
Although self-help strategies will not stop tics, some people find they can help reduce stress and make day-to-day life feel more manageable. These should be used alongside advice from your GP or healthcare team where appropriate.
Some ideas include:
- Finding ways to manage stress, such as relaxation techniques or mindfulness;
- Taking regular breaks if you notice tics becoming more noticeable when you're tired or overwhelmed;
- Creating a comfortable space where you can relax and tic freely;
- Connecting with peer support groups or organisations for people with Tourette syndrome;
- Taking part in activities that encourage focus and enjoyment, such as music, sport, or creative hobbies.
Learning more about Tourette syndrome and connecting with others who share similar experiences can also help reduce feelings of isolation and self-stigma. Having Tourette's is just one part of who you are, and support is available if you're finding it difficult to cope.
Frequently asked questions
Can adults develop Tourette syndrome?
Tourette syndrome usually begins during childhood. Symptoms typically appear before age 18. It's uncommon for someone to develop Tourette's for the first time as an adult. If tics begin later in life, it's important to speak to your GP, who can assess your symptoms and, if needed, refer you for further investigation.
Can Tourette's go away?
For many people, Tourette symptoms become less frequent or less severe during late adolescence or early adulthood. Some people's tics may stop altogether, while others continue to experience them into adulthood. Everyone's experience is different, and symptoms can change over time.
What's the difference between Tourette syndrome and a tic disorder?
Tourette's involves both motor and vocal tics that last for at least a year, with symptoms beginning before age 18. Other tic disorders may involve only movement or sound tics, tics that last for a shorter period of time, or that begin for the first time as an adult.
Finding a counsellor or therapist
When looking for a counsellor or therapist, you may wish to choose someone with experience supporting people with neurological or neurodevelopmental conditions, or who understands the emotional impact of living with a long-term condition.
The most important thing is finding someone you feel comfortable talking to. Many counsellors offer an initial consultation, giving you the opportunity to ask about their experience, therapeutic approach and whether they feel like the right fit for your needs.
