The Brain Charity

Tourette syndrome (TS) is one of the most misunderstood neurodevelopmental conditions. Popular culture often reduces it to dramatic stereotypes, yet the clinical and lived reality is far more nuanced.  

This article draws on UK clinical frameworks, including the National Institute for Health and Care Excellence (NICE) and the World Health Organisation’s ICD-11 classification, as well as leading international research. 

What is Tourette syndrome? 

Under ICD-11, Tourette syndrome is classified as a neurodevelopmental tic disorder.  

Diagnosis requires: 

• Multiple motor tics (e.g., blinking, shoulder movements) 

• At least one vocal tic (e.g., throat clearing, sounds, words) 

• Symptoms present for 12 months or more 

• Onset in childhood or adolescence 

• Symptoms not caused by substances or another neurological condition 

Tics are involuntary neurological events. Although some people can temporarily suppress them, doing so requires significant effort and can be exhausting. Suppression does not mean the tic is voluntary. 

How common is Tourette syndrome? 

Tourette syndrome is far more common than many assume: 

• Affects approximately 0.5–1% of children 

• Diagnosed more frequently in males (around 3–4:1 ratio) 

• Often under-recognised in females and adults 

Many individuals continue to experience tics into adulthood, though severity often changes over time. 

What are tics really? 

Tics are not simply “habits” or behavioural problems. They involve complex neurological processes. 

They may be: 

• Motor (movements such as blinking, head jerking) 

• Vocal (sounds such as grunting or repeating words) 

• Simple (brief, rapid movements or sounds) 

• Complex (more coordinated patterns or phrases) 

Many people with Tourette syndrome experience a premonitory urge, an uncomfortable sensation or a build-up of tension preceding a tic, which is then temporarily relieved.  

Tics often worsen with: 

• Stress 

• Fatigue 

• Anxiety 

• Effortful masking in social environments 

The pressure of Tics

Masking or suppressing tics in classrooms, workplaces, or public spaces can lead to a rebound increase later. This can be physically and emotionally draining. 

The Brain Charity offers a free counselling service delivered by counsellors who specialise in supporting people with neurological conditions. As demand for this service is high, there is a waitlist to access it. 

If you would prefer to access support more quickly, we also offer a paid-for neuro-therapy service. For every paid session, a free session is funded for someone who would otherwise be unable to access support. In some cases, employers may be able to cover the cost of sessions through workplace wellbeing or occupational health schemes. 

What causes Tourette syndrome? 

The exact cause remains unknown, but research shows: 

• It is highly heritable 

• It involves multiple genetic variations (not a single “Tourette gene”) 

• Brain network differences, particularly in cortico-striatal circuits, play a role 

• Environmental factors may influence the severity or expression 

Tourette syndrome is not caused by parenting style, trauma, or moral weakness. It is a neurodevelopmental variation. 

Development across the lifespan 

Tourette syndrome symptoms typically: 

• Begin between ages 4–6 

• Peak in severity during late childhood or early adolescence 

• Decrease in many individuals during adulthood 

However, the reduction of symptoms is not universal. Some people continue to experience tics into adult life. Even if tics lessen, co-occurring conditions may persist. 

Coprolalia: The most misunderstood feature of Tourette syndrome 

One symptom sometimes associated with Tourette syndrome is coprolalia, the involuntary utterance of socially inappropriate, obscene, or taboo words or phrases. It is essential to be clear: Coprolalia is not a separate condition but a specific, relatively rare type of vocal tic. 

What coprolalia is, and is not 

Involuntary: The person does not choose to say the words. Like other tics (blinking, throat clearing, movements), they occur without conscious intent, even if briefly suppressible. 

Uncommon: Only around 10–15% of people with Tourette syndrome experience coprolalia. The majority never do. 

Not a reflection of belief or character: The words do not represent the person’s views, values, humour, or prejudices. They are neurological events linked to differences in brain inhibitory control networks. 

Why does it often appear context-specific 

One of the most confusing aspects is that the words can seem highly relevant to the situation, sometimes appearing to be the “worst possible thing” to say in that moment. 

This happens because human thinking is naturally context-sensitive. In any social situation, our brains automatically register social rules and taboos. If someone is aware they have coprolalia, they may become anxious about saying something inappropriate. The brain then flags what would be most socially unacceptable in that setting. 

Psychological research shows that when we try very hard not to think about something, it often becomes more prominent in our minds (sometimes called a “rebound” or “ironic effect”). In Tourette syndrome, the brain’s control systems work differently, making certain words more likely to be said as tics. 

In simple terms: 

Coprolalia is not “choosing the worst thing to say.” 

It is difficult to filter out unwanted words in a brain that is already highly attuned to social boundaries. 

The more inappropriate or morally opposed the word feels to the individual, the more distressing and intrusive it can be, and paradoxically, the more likely it may surface as a tic. 

Comorbidity: The Rule, Not the Exception 

Up to 90% of individuals with Tourette syndrome have at least one additional neurodevelopmental or mental health condition. 

The most common are: 

• Attention Deficit Hyperactivity Disorder (ADHD) 

• Obsessive Compulsive Disorder (OCD) 

Anxiety and mood disorders are also frequent. 

Importantly, these co-occurring conditions often drive more functional difficulty than tics themselves. For example, ADHD-related executive functioning challenges may affect education and employment more than motor or vocal tics. 

Children may also experience behavioural difficulties, and in some cases, tics are discussed in relation to conditions such as PANS or PANDAS. Careful clinical assessment is essential. 

Suicide and emotional risk in Tourette syndrome 

People with Tourette Syndrome experience significantly increased emotional and mental health challenges compared with the general population, and research indicates this extends to suicide risk. 

Scientific studies using large national health registers have shown that individuals with Tourette syndrome and other chronic tic disorders have an approximately fourfold higher risk of suicide compared with matched people without tic disorders, even after accounting for common psychiatric comorbidities such as anxiety and mood disorders. 

This increased risk reflects a complex interplay of factors: 

High rates of mental health comorbidity, including anxiety, depression, obsessive–compulsive symptoms and ADHD, all of which are themselves linked to suicidal thoughts and behaviours. 

Social stigma and misunderstanding, bullying, exclusion, and repeated negative interactions increase distress and isolation. 

Frustration and exhaustion from trying to manage or mask symptoms in environments that lack understanding or accommodations. 

It’s important to emphasise that most people with Tourette syndrome do not act on suicidal thoughts, but the elevated risk underscores the need for compassionate, proactive support, including access to mental health care, safe spaces to talk about distress, and educational environments that reduce stigma. 

If you or someone you care about is experiencing suicidal thoughts or is in immediate danger, please contact a crisis support service straight away. In the UK, you can call Samaritans on 116 123 or visit your nearest A&E department. 

The Brain Charity provides free counselling, but we are not a crisis service, and our wait times mean we cannot provide immediate support in urgent situations.  

Assessment in UK practice 

Assessment typically includes: 

• Clinical interview 

• Observation 

• Functional impact across home, school, and work 

• Structured measures such as the Yale Global Tic Severity Scale (YGTSS) 

In line with NICE guidance, assessment focuses not only on symptoms but on real-world impact. 

If a child begins experiencing tics, parents or carers should contact their GP for advice and potential referrals. 

Treatment and support

There is currently no cure for Tourette Syndrome, but there are effective management options. 

NICE recommends behavioural interventions such as: 

• Comprehensive Behavioural Intervention for Tics (CBIT) 

• Habit Reversal Training (HRT) 

CBIT combines psychoeducation, awareness training, competing responses, and functional analysis. It is collaborative and goal-directed, focusing on reducing distress and impairment rather than enforcing conformity. 

Research shows that behavioural therapies can reduce tic severity, with outcomes comparable to those of medication for many individuals. 

Medication 

Medication may be considered when tics cause significant distress or impairment.  

Options may include: 

• Dopamine-modulating medications 

• Alpha-2 adrenergic agonists 

Medication decisions are individual and involve careful risk–benefit discussions. 

Specialist interventions 

In rare, severe, treatment-resistant cases, advanced interventions such as Deep Brain Stimulation (DBS) may be considered in adults.