American singer-songwriter Billie Eilish in a recent interview spoke about the exhaustion that comes with living with Tourette Syndrome (TS). The nervous system disorder that results in tics begins to present in kids as young as three years old.
The US Centers for Disease Control and Prevention (CDC) puts the number of people with a lifetime diagnosis of tics – some disappear over time - to 3 cases per 1,000.
Wondering if your child’s behaviour qualifies for a TS diagnosis? Read on. We spoke to Dr Vivek Mundada, Consultant Paediatric Neurologist, UAE-based Medcare Women and Children Hospital, about what TS means for a child and who is at risk of getting the condition. This is what he had to say:
What is Tourette syndrome?
Tourette Syndrome (TS) is a condition of the nervous system resulting in ‘tics’, or sudden unintentional movements or sounds.
It may present in a number of ways:
- Movement tics (motor tics): These can be as simple as shoulder shrugs, blinking eyes or touching things. Complex movement tics affect more than one muscle group when several different tics happen together.
- Simple sound tics (vocal tics): These can include repeated sounds such as those caused by throat clearing.
- Complex vocal tics: In this case, a person or child might make several sounds and then repeat the sequence.
Most people with Tourette syndrome have combination of two or more motor tics as well as vocal tics. Such tics occur many times a day and over a period of more than a year. That's when a neurologist can diagnose the syndrome. For most people, Tourette syndrome starts between the ages of three and nine, with tics generally peaking at around the ages of 10 to 13.
[In the case of Grammy-winner Eilish, she was diagnosed at age 11; she is currently 20.]
Are girls more susceptible to Tourette’s than boys?
Actually, no. Many studies have shown that boys are more likely to develop tics and Tourette syndrome than girls. Many children can have associated neuropsychiatry or neurodevelopmental conditions alongside this condition, too, such as:
- Anxiety disorder,
- Obsessive compulsive disorder, or
- Attention-deficit/hyperactivity disorder.
Is it a genetic disorder?
The exact cause of Tourette syndrome is still not known. However, the condition tends to run in families, so genes do play a role. Results from Gilles de la Tourette syndrome (GTS) family studies consistently show a 10-to-100-fold increase in the rates of GTS in first-degree relatives when compared to those rates in the general population.
How do I know if my child has this condition?
Tourette syndrome is diagnosed when someone has at least two motor tics and at least one vocal tic for more than 12 months. There's no single test for Tourette's syndrome. Tests and scans such as magnetic resonance imaging brain scan can be used to rule out other conditions.
Are people with Tourette’s predisposed to saying inappropriate things at inappropriate times?
Tics can occur anywhere in the body. The first motor tics tend to be of the face, and as we get older, tics move to other areas such as the neck, arms, legs and body.
Vocal tics tend to start off as simple tics. Common simple vocal tics include throat clearing, sniffing, snorting, and grunting. They can later become more complex and include words or sentences. This is when a person can say inappropriate things. Although sometimes it may look that they are saying it on purpose but it is done completely involuntarily.
That said, only 10 per cent of people who have Tourette syndrome swear. Tics that use bad language are known as coprolalia and most people with TS don’t have this tic. It is also uncommon for them to have other tics like copropraxia, which is the making of rude or unacceptable movements or gestures.
What is the treatment for a tic?
There is no cure for TS, but half of the young people diagnosed will see their symptoms reduce to the point where they seem to disappear or become easily manageable by the time they are 18. Tics can be worse if you are stressed, nervous, excited or anxious. So often curbing such anxiety with the help of a neuropsychologist can help.
Other aids include:
- Behavioral therapies (such as Habit Reversal Therapy) can be useful for most people with TS
- Relaxing
- Exercising
- Eating a healthy diet,
- Some people find playing sport reduces their tics
- Others, including Eilish, don’t exhibit tics when they sing or play a musical instrument like the drums
Talking to a child about Tourette syndrome
Does your child have TS? Annette Du Bois, of UK-based confidence and emotions coaching Champs Academy, who works with children with TS, says first one must explain the situation or condition in a simplified medical way. “Get them to not see it as permanent (even if it might last a long time), but a condition that can improve over time.
“Prevent them from labelling themselves as the condition they currently have,” she says.
Tips to help TS kids
Du Bois lists the following strategies:
- Stay calm: Try to displace the tic with some breathing techniques or other things to focus on such as playing with a pet or taking up a new hobby.
- Shift the focus: Make a list of their qualities or traits/things they’re good at to focus on.
- Find a role model: Research people who have had or do have Tourette’s and what they’ve gone on to achieve despite their condition.
- Find a group: Join a support group to see you’re not alone.
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