After a headline moment at the BAFTAs, there’s been a lot of conversation around Tourette syndrome. What do we need to know about the condition, and what needs to be better understood?
At this year’s BAFTAs, two major wins for the powerful film I Swear brought renewed attention to John Davidson, the man whose story of living with Tourette’s inspired the film. During the ceremony, a vocal tic caused John to shout out an inappropriate and offensive slur while revered actors Michael B Jordan and Delroy Lindo were on stage presenting an award.
In the days since, many have criticised the handling of the moment: the BBC’s slipshod decision to air it, the lack of adequate aftercare from the BAFTA organisers, and accusations that the entire planning of the night should have been more carefully structured to protect and safeguard all parties in attendance. The latter point refuelled hefty accusations of institutional racism at the BAFTA organisation, adding another layer of complication to the conversation.
The language was, unequivocally, offensive, and there’s no ignoring the impact it likely had on the two stars on stage — who, albeit shocked, responded to the situation with inconceivable grace.
Still, the reaction online has been somewhat disappointing, revealing that there are many people who know little-to-nothing about the condition itself.
Here, we look at what Tourette syndrome is, the misconceptions that surround it and why understanding matters.
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What is Tourette Syndrome?
Tourette Syndrome is a condition that causes compulsive and uncontrollable tics — sudden movements (motor tics) and sounds (vocal tics) that the person can’t control.
One of the most important distinctions to be aware of is that it’s a neurological condition, not a behavioural problem,
“It affects the way certain circuits in the brain function, particularly those involved in movement and impulse control,” explains pharmacist Abbas Kanani. Neurotransmitters such as dopamine are thought to play a role, although research is ongoing and the exact mechanisms aren’t yet fully understood.
Is Tourette Syndrome rare?
Tourette’s is often perceived as being rare or taboo but, in reality, it’s far more common than many assume. In the UK, it’s estimated around 300,000 children and adults are living with Tourette Syndrome — that’s roughly one in every 100 school-aged children and around 0.3% to 0.4% of adults.
Symptoms often begin in childhood and, for many, improve during adolescence. Interestingly, boys are around three to four times more likely than girls to receive a diagnosis.
Emerging research suggests that girls may be underdiagnosed or overlooked, possibly because diagnostic criteria has been historically based on how the condition presents in boys, similar to autism and ADHD. It’s possible, then, that as awareness grows, this imbalance may shift.
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What causes Tourette Syndrome?
As we’ve established, Tourette’s isn’t a behavioural disorder, it’s neurological. This knowledge confirms that there’s no evidence that parenting style, discipline or personality traits can cause it.
Like many neurological conditions, it’s believed to result from a combination of genetic and environmental factors. Researchers also believe that differences in certain neurotransmitters, such as and serotonin, may contribute, as well as variations in the brain region involved in involuntary movement.
Some environmental factors that have been linked to the onset and course of Tourette’s include maternal smoking or drinking during pregnancy, stressful events during pregnancy, harmful events pre-pregnancy and post-pregnancy, and low birth weight.
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Are tics intentional — and are they all swear words?
No. Many people assume tics are intentional (particularly vocal tics), but they’re not. “The tics are automatic sounds or words that pop out without conscious control,” explains Abbas.
Most people experience tics as blinking, throat clearing, shoulder shrugging or small noises.
However, some can involve socially inappropriate or offensive language, like John Davidson’s tic at the BAFTAs. This symptom is actually a rare one known as coprolalia and affects only around one in 10 people with Tourette’s. There’s no meaning or intention behind it and it doesn’t necessarily reflect any of the individual’s beliefs.
In fact, tics often get worse in stressful situations, when the person is nervous, anxious or feels under public scrutiny. Research suggests this could be due to heightened anxiety in the parts of the brain linked to tic expression, which can intensify symptoms.
Whatever the cause, it’s clear that suggesting someone ‘meant what they said’ fundamentally misunderstands the condition.
Can people with Tourette’s control their tics?
Some people are able to suppress their tics to some extent, often described as feeling trying to hold in a sneeze.” But this suppression creates growing discomfort, which Abbas calls “premonitory urge”. The only way to relieve it is to allow the tic to happen.
So, what may appear to be a controlled or a deliberate action, isn’t. And if the individual were to attempt to hold it in, it would be exhausting and, in almost all cases, impossible to sustain.
Commonly co-occurring conditions
Understandably, as a consequence of navigating misunderstanding, stigma and social difficulty, many individuals also report experiencing depression and anxiety.
The most commonly co-occurring condition with TS is ADHD. After this it’s Obsessive, Compulsive Disorder (OCD), which operates on a similar basis, with compulsions that the individual can’t control.
Disruptive or angry behaviours are reported in over 40% of people with Tourette Syndrome, often because they get frustrated with themselves for not being able to control their tics. This kind of frustration is especially common in childhood, before the individual has learned to understand their condition, as well as their triggers and coping strategies.
Can you have Tourette’s without realising?
For many people, tics are barely noticeable. So yes, this is possible, especially as, while its characterised by the presence of both motor and vocal tics, not everyone’s symptoms are the same.
Do all individuals with tics have Tourette’s?
Not necessarily. To receive a diagnosis, a person must have experienced both motor and vocal tics for at least a year, with onset in childhood.
But people can experience temporary or functional tics, which can be linked to anxiety and other mental health issues or come about in the wake of a stressful incident.
Read more: Are schools failing autistic children?
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Does Tourette’s affect communication?
It can, but not in the way people often assume. Tourette’s doesn’t impair intelligence, comprehension or language skills — which are usually perfectly intact. The issue isn’t in understanding, but interruption.
Motor and vocal tics may disrupt the flow of speech, and people may experience stuttering, repetition of their own words (palilalia) or of others’ words (echolalia).
What tends to affect communication, then, isn’t the tics themselves but how other people react to them. With patience, these interruptions shouldn’t cause misunderstanding.
How should you respond to someone’s tics?
The most helpful response is often the simplest — no reaction is needed at all. Avoid making a thing of it: no staring, dramatic responses or telling them to stop. Remember that suppressing tics requires significant effort and can be physically and emotionally draining.
Calm, matter-of-fact acceptance reduces stress and may in turn reduce tic severity. As Abbas says: “Compassion and understanding make all the difference.”
Is there a cure?
There’s currently no cure for Tourette Syndrome, according to the NHS. However, many people are able to manage their symptoms successfully, significantly reducing the frequency and severity of their tics.
New approaches to tic management are also emerging, including wearable neurostimulation devices designed to help regulate the brain signalling linked to tics. For some, these tools can offer relief, while for others, learning to live comfortably with the tics — and not suppress them — is the priority.
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