Mind

What is Tourette Syndrome? The mysterious disorder explained

Ever wondered what this disorder is all about? Find out about the condition here, including its signs, symptoms and treatment.

Tourette Syndrome (TS) is a neuro-developmental disorder characterised by repeated involuntary movements (motor tics) and uncontrollable sounds (vocal or phonic tics). It was first identified as a disorder in 1885 by a French neurologist named Dr George Gilles de la Tourette.

People with TS are most commonly affected between the ages of two and 21 years, with the majority of cases occurring in children aged four to 12 years. It's not known for sure how many people are affected by the syndrome but research indicates that it might be as many as one in 200 people. The current prevalance rate in children is 1 in 100. More boys than girls are affected.

The majority of people with Tourette Syndrome are aged between four and 12 years. *Image: Andre Guerra/Unsplash*
The majority of people with Tourette Syndrome are aged between four and 12 years. Image: Andre Guerra/Unsplash

What is the cause of Tourette Syndrome?

The causes of TS have not been completely identified although current research suggests that the disorder stems from the abnormal metabolism of at least one brain chemical (neurotransmitter) called dopamine. Researchers believe that other neurotransmitters are also involved.

What are the signs and symptoms of Tourette Syndrome?

Symptoms can range from very mild to quite severe. The majority of cases also have other conditions which can cause significant impact on the lives of people with TS.

The first symptoms of TS are usually facial tics - commonly rapid and/or repeated eye blinking. Other motor tics may appear later, such as:

  • Head jerking
  • Neck stretching
  • Foot stamping
  • Body twisting
  • Bending

People with TS can often continually cough, sniff, grunt, clear their throat, yelp, shout or bark. A person with TS may touch other people excessively or repeat actions obsessively and unnecessarily. Sometimes people with TS can demonstrate self-harming behaviours including lip and cheek biting, and head banging or display other disordered behaviours such as involuntary swearing (coprolalia).

There are two broad categories of TS tics:

Simple

  • Motor - eye blinking, head jerking, shoulder shrugging, facial grimacing, nose twitching
  • Vocal - throat clearing, barking noises, squealing, grunting, gulping, sniffing, tongue clicking

Complex

  • Motor - jumping, touching other people and things, twirling about, repetitive movements of the torso or limbs, pulling at clothing and self-injurious actions including hitting or biting oneself
  • Vocal - uttering words or phrases, coprolalia, echoalia (repeating a sound, word or phrase just heard) or palilalia (repeating one's own words)

The current prevalence of Tourette Syndrome in children is 1 in 100. More boys than girls are affected. *Image: Janko Ferlic/Unsplash*
The current prevalence of Tourette Syndrome in children is 1 in 100. More boys than girls are affected. Image: Janko Ferlic/Unsplash

What is the treatment for Tourette Syndrome?

Most people with TS don't require medication, but medication can help when symptoms interfere with daily life or cause distress. Medication can also help reduce the frequency and/or intensity of tic symptoms. Generally speaking, the medications are introduced in small doses and slowly increased until the symptoms are managed. The amounts involved vary from person to person.

Learning relaxation techniques can also be useful as alleviating stress can relieve symptoms. Other treatments used in TS include behaviour therapy techniques such as Habit Reversal Therapy (HRT) that is used in the Comprehensive Behavioural Intervention for Tics (CBIT). In extremely severe and debilitating cases not responding to other treatments, Deep Brain Stimulation (DBS) can be helpful.

WATCH this video of a little girl with Tourette Syndrome explaining what it's like to have the disorder.

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Can Tourette Syndrome ever go away?

For some people, there is a period in their lives where their symptoms seem to disappear. For others, they may notice a distinct improvement in their symptoms in their late teens or early 20s.

Experts in the disorder talk about a 'waxing and waning' of TS symptoms depending on a variety of factors including the individual's life circumstances, whether or not they are undertaking treatment (medication and/or behavioural therapy) and how much stress they are experiencing.

People with TS can expect to live to a normal age. Although TS is usually lifelong, it is not degenerative.

READ: Bullied Tourette Syndrome sufferer, 12, becomes motivational speaker.

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Some people with Tourette Syndrome notice an improvement in their symptoms in their late teens or early 20s. *Image: Marco W/Unsplash*
Some people with Tourette Syndrome notice an improvement in their symptoms in their late teens or early 20s. Image: Marco W/Unsplash

What is the diagnosis for Tourette Syndrome?

TS is diagnosed by observing the symptoms and evaluating family history when:

  • The person has multiple motor tics and one or more vocal tics.
  • Tics occur most days for at least one year.
  • The person was not free of tics for more than three months during the past year.
  • The tics are not caused by another illness, a substance or a medication.
  • Symptoms began before age 18.

The diagnosing doctor will ask questions about the impact of the tics on daily life, and about the other problems that commonly occur with Tourette Syndrome, such as anxiety, changes in mood, obsessions, compulsions, attention and learning problems.

No blood screening, x-ray or any other type of medical test exists to identify TS. Having said that, a doctor may request an EEG, CAT scan or certain blood tests to rule out other ailments that could be confused with the syndrome.

LISTEN to this podcast from the ABC featuring The Voice Australia runner-up, Adam Ladell talking about living with Tourette Syndrome.

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Adam Ladell was runner-up in the 2016 season of *The Voice Australia*. Adam, now 18, was diagnosed with Tourette Syndrome at the age of 14. *Image: Adam Ladell/Facebook*
Adam Ladell was runner-up in the 2016 season of The Voice Australia. Adam, now 18, was diagnosed with Tourette Syndrome at the age of 14. Image: Adam Ladell/Facebook

Is Tourette Syndrome hereditary?

Research suggests that TS is inherited as a dominant gene that may produce different symptoms in different family members. There is about a 50 percent chance of a person with TS passing it on to his/her children. However, the inherited syndrome may not appear as recognisable in the same way in which it was displayed in the child's parent. The dominant gene may express itself as TS, as a milder tic disorder or as obsessive-compulsive symptoms without the appearance of tics at all.

What is known about the families of people with TS is that a higher than normal incidence of milder tic disorders and obsessive-compulsive behaviours occur.

In some cases, TS may not be inherited. In this instance, it is termed as sporadic TS because the cause is not known.

Do children with Tourette Syndrome have special educational needs?

Most children with Tourette syndrome will have normal intellectual development, but some may have learning difficulties. Those difficulties, combined with attention deficit and the problems inherent in dealing with the tics, may call for special educational assistance.

Can people with Tourette Syndrome lead normal lives?

Most people with TS lead perfectly normal lives. Tourette Syndrome does not make them less intelligent and many achieve great success in all walks of life.

WATCH this video explaining the signs and symptoms of Tourette Syndrome

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Can people with Tourette Syndrome stop their tics?

Sometimes, people with TS can stop their tics but only for a short time. Eventually, tension mounts to such an extent that the tic is displayed, however hard the person with TS tries to stop it. People with TS usually find that their tics worsen usually worsen when they are stressed and are less noticeable when they are relaxed or absorbed in an activity they enjoy.

Where to get help

For more information, help and support:

Tourette Syndrome Association of Australia (TSAA)

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