Tourette’s syndrome, also known as Gilles de la Tourette syndrome (GTS), is a neurological condition that usually begins in childhood. It is illustrated by repetitive involuntary movements and vocalisations, which are also known as tics.

Individuals diagnosed with Tourette’s experience vocal and/or physical tics, which are categorised as simple and complex. Vocal tics include a variety of sounds while physical tics refer to a range of physical movements. These tics are deemed simple or complex depending on their severity. A simple tic could be a small movement whereas a complex tic could be a series of physical movements.

Over 300,000 children and adults 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 syndrome runs in the family. It is also closely associated with attention deficit hyperactivity disorder (ADHD) and obsessive compulsive disorder (OCD).

The prevalence and epidemiology of Gilles de la Tourette syndrome (GTS) are more complex than was once thought. Until fairly recently, GTS was thought to be a rare and, according to some, a psychogenically mediated disorder. Prevalence depends, at least in part, on the definition of GTS, the type of ascertainment, and epidemiological methods used. However, in dedicated specialist GTS clinics, the majority of patients were noted to have positive family histories of tics or GTS, and large, extended, multiply-affected GTS pedigrees indicated that many family members had undiagnosed tics or GTS: it was therefore realized that GTS was far from uncommon.

Seven early epidemiological studies reported that GTS was uncommon or rare for a variety of reasons. More recently, however, two pilot studies and 12 large definitive studies in mainstream school and school-age youngsters in the community, using similar multistage methods, have documented remarkably consistent findings, demonstrating prevalence figures for GTS of between 0.4% and 3.8% for youngsters between the ages of 5 and 18 years. Of the 420 312 young people studied internationally, 3989 (0.949%) were diagnosed as having GTS. It is therefore suggested that a figure of 1% would be appropriate for the overall international GTS prevalence figure. There were however, “outliers” to the figure. For instance, GTS does seem to be substantially rarer in African-American people and has been reported only very rarely in sub-Saharan black African people. GTS is found in all other cultures, although to possibly differing degrees. In all cultures where GTS has been reported, the phenomenology is similar, highlighting the biological underpinnings of the disorder.

However, there are case citations and case studies by Indian Psychiatrists, but there isn’t any conclusive information available on the prevalence and the extent of GTS in India.  Having said that while Tourette’s does not usually affect overall physical health, it can have a significant emotional impact. Many people who have the condition experience embarrassment, low self-esteem and social isolation. Counselling however can really help to address these issues.

In this section, will explore Tourette’s in more detail, looking at its symptoms, causes and the treatment options available - including counselling.

Tourette’s symptoms

Repeated tics and involuntary vocalisations are the main symptoms of Tourette's. Tics tend to begin in childhood and usually peak in terms of frequency between the ages of 10 and 12. In most cases, the symptoms tend to disappear past the age of 18.

As mentioned previously, tics can range in severity, usually categorised by simple or complex, and physical or vocal. Below are the different variations of tics people with Tourette's may have:

Simple vocal tics:

• coughing
• screaming
• sniffing
• blowing
• squeaking

 

Complex vocal tics:

• repeating an identical phrase continuously (palilalia)
• swearing (coprolalia)
• repeating phrases from other people (echolalia)

 

Simple physical tics:

• jerking of the head
• teeth grinding
• twisting of the neck
• blinking
• rolling the eyes

 

Complex physical tics:

• shaking
• hitting or kicking things
• copying the movement of others (echopraxia)
• shaking of the head and making offensive gestures (copropaxia)

Premonitory sensations

Before a tic, many sufferers will experience an unusual or uncomfortable feeling. These feelings are recognised as premonitory sensations. Premonitory sensations 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

When do Tourette’s symptoms occur?

Tics are triggered by certain situations. It could be when the individual is in a stressful situation, feeling anxious, ill or tired. The occurrence of tics can be reduced by participating in an activity that requires a high amount of concentration, like playing in a competitive sports team or reading a book.

It is possible for tics be to controlled for a certain amount of time. In high-pressure environments, like a classroom, many people with Tourette's are able to suppress their tics until the end of the lesson. However, over long periods of time, like an entire school day, the restraining of tics can take its toll on the sufferer. They can become hard to suppress and extremely tiring. Most people that are able to control their Tourette’s symptoms feel the need to let it go as soon as they’re in a more relaxed environment like their home or in their own car.

Even though tics can be controlled, it is understood that releasing the tics as soon as they come on is best for the sufferer. This reduces the occurrence of a more severe ‘tic attack’ which is what may happen after a tic has been suppressed for a long period of time.

Associated conditions

People with Tourette's are likely to show signs of other conditions commonly associated with the syndrome. These are:

Echolalia (repeating other’s 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 other’s actions)

Echopraxia is similar to echolalia, but instead of repeating words, sufferers will repeat the physical actions of others.

Palilalia (constantly repeating a phrase)

Palilalia is similar to echolalia, but sufferers will repeat whole phrases rather than specific words over and over again.

Learning disabilities

Progressing well in school can be difficult as the part of the brain that children use to learn things through habit, is the same part of the brain that is affected by Tourette’s syndrome. This disrupts the natural learning patterns of children, often resulting in slower progression and development in areas such as reading, writing and mathematics. If tics are strong and difficult to manage, school children will often benefit from additional support.

Short temper or mood swings

There are other behavioural conditions that are associated with Tourette’s. These include having a short temper, mood swings and in some cases the demonstration of rude and unsuitable behaviour towards others. These behavioural conditions can be treated in conjunction with controlling tics.

What causes Tourette’s?

The causes of Tourette’s syndrome are unknown as it is a very complex neurological condition. What is known is that it is hereditary and there is approximately a 50% chance a parent may pass the gene down to their children. Many children who inherit Tourette’s however will only experience mild symptoms like an obsessive disorder or a tic.

Biological causes

Tourette’s is thought to be linked to complications in the part of the brain called the basal ganglia. These cells are located deep inside the brain and help control the body’s actions. Further research also suggests that the basal ganglia may influence decision-making and motivation. It is the occurrence of temporary complications within the basal ganglia that are believed to result in the tics that are associated with Tourette’s syndrome.

Environmental causes

Some research suggests viruses that cause a sore throat (streptococcal bacteria) could be linked to Tourette’s syndrome. The theory behind this is that when the body fights an infection, antibodies are produced which (in some cases) interact with the brain tissue and affect the brain's functioning. This means that some children who catch these infections can go on to develop symptoms of OCD or Tourette’s.

Diagnosing Tourette’s syndrome

Most people with mild symptoms of Tourette’s tend to go undiagnosed, as their symptoms do not affect day-to-day life. However, if symptoms are serious enough that they hinder routine activities, seeking help and asking for a diagnosis is advised.

According to NHS Choices, the first stage of diagnosing Tourette’s syndrome is to rule out any other conditions that may be causing symptoms. These could be sniffing and coughing or blinking more than usual, which can be mistaken for tics.

Other conditions that need to be dismissed so Tourette’s can be correctly diagnosed include:

Dystonia

This condition causes unintentional contractions and muscle spasms. These may be sustained or intermittent, and in some cases they can cause pain. Dystonia is considered to be a neurological condition, but in the majority of cases brain functions such as language, intelligence and memory remain unaffected.

Autistic spectrum disorder conditions

Autism spectrum disorder (ASD) conditions refer to a group of disorders - such as Asperger syndrome, autism and Rett’s syndrome - that have similar characteristics. Individuals with an ASD condition are likely to have behavioural problems, learning difficulties and problems with social interaction. All of these could easily be mistaken for symptoms of Tourette’s. A number of these conditions may also cause repetitive movement, known as mannerisms, which can further be mistaken for tics.

Diagnosis checklist

Although a specific test for Tourette’s syndrome isn’t available, there is a checklist your GP can use for an assured diagnosis:

• The vocal and physical tics started before the age of 18.
• The tics have been happening for over a year.
• The tics happen multiple times a day, nearly every day.
• The child suffers from multiple physical tics and at least one vocal tic.
• The symptoms have not been caused by any other conditions or medication

 

Treatment for Tourette’s syndrome

Treatment for Tourette’s syndrome is not able to completely cure it, but it can help sufferer’s to better manage symptoms - making day-to-day life easier.

Counselling and psychotherapy are effective treatment options for people with Tourette’s. Although Tourette’s is not specifically a psychological disorder, counselling sessions can help sufferers to cope with additional social and emotional issues that can result from the condition.

Behavioural therapy

One therapeutic approach that is often used in treatment for Tourette’s is behavioural therapy, which focuses on changing behavioural patterns. A counsellor will work with their client to identify the cause of the TICs and will focus on fostering a method that is less noticeable to relieve it. This is known as habit reversal.

An example of habit reversal could be that the sufferer has an intense vocal tic that leads them to repeat phrases out loud. To counteract the tic, they could take a number of deep breaths instead. This acts as a less obvious release in comparison to a tic.

Tourette’s syndrome medication

There are three types of medication that can be prescribed to help with Tourette’s. These are dopamine antagonists, alpha2-adrenergic agonists and muscle relaxants. The aim of these is to reduce the severity of tics, rather than treat the cause of Tourette’s. A GP will advise what medicine to take if it’s the right course of action.

Living with Tourette’s

The good news is that in two-thirds of cases, the symptoms of Tourette’s will alleviate after 10 years or so. After this stage, the need for medication or therapy is reduced as tics become less frequent and serious. They may even stop altogether.

For the remaining third of Tourette’s sufferers, symptoms will continue after 10 years, but they generally reduce in severity with age. This will reduce a person’s need for therapy and medication, and there is still the possibility that, over time, the symptoms will completely disappear.

Self-help tips for managing tics

There are a number of self-helps tips available to manage with Tourette’s tics. These should not be used as a substitute for advice from a medical professional, but they might make living with Tourette’s syndrome easier. These tips include:

• Avoid stress - Try to avoid situations that contribute towards stress
• Calm room - Have a room to tic away from others
• Online help - There are communities on social media that can help connect people with Tourette’s with others in the same situation
• Activities that require concentration - Learn to play an instrument or exercise

 

What should I be looking for in a counsellor or psychotherapist?

Whilst there are no rules or regulations regarding the level of training and experience a counsellor dealing with Tourette's syndrome needs, we do recommend that you check your therapist is experienced in the area for which you are seeking help.  However, behavioural therapy is recommended to help those with Tourette's syndrome.