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Tourette's syndrome

Tourette’s syndrome is a neurological condition that involves repetitive involuntary movements and vocalisations, known as tics. These tics are deemed simple or complex depending on their severity. A simple tic could be a small movement or sound whereas a complex tic could be a series of physical movements or sounds.

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

While Tourette’s does not usually affect physical health, it can have a significant emotional impact. Many people who have the condition experience embarrassment, bullying, low self-esteem and social isolation. This is where counselling can step in to support.

Here we’ll explore Tourette’s in more detail, looking at its symptoms, causes and the treatment options available.

Tourette’s symptoms

Repeated tics 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 ease after the age of 18.

Tics can range in severity, usually categorised by simple or complex, and physical or vocal. Examples of simple vocal tics include coughing, screaming, sniffing, blowing and squeaking. Examples of complex vocal tics include repeating an identical phrase continuously, swearing and repeating phrases from other people.

Examples of simple physical tics include jerking of the head, teeth grinding, twisting of the neck, blinking and rolling the eyes. Examples of complex physical tics include shaking, hitting or kicking things, copying the movement of others and shaking of the head and making offensive gestures. 

Premonitory sensations

Before a tic, those with the condition will experience an unusual or uncomfortable feeling. These feelings are known as premonitory sensations and 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 you’re in a stressful situation, feeling anxious, ill or tired. Tics may be reduced when participating in an activity that requires a lot of concentration, like playing in a sports team or reading a book.

It is possible for tics to be 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. Over long periods of time, however (like an entire school day), the restraining of tics can take its toll. 

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 those affected. 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.

In this video, YouTuber Casper Lee talks to guests about the reality of growing up with Tourette's. 

Associated conditions

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

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 difficulties

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 maths. If tics are strong and difficult to manage, school children will often benefit from additional support.

Behavioural problems

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

What causes Tourette’s?

The causes of Tourette’s are unknown as it is a 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. It’s likely to be a combination of biological and environmental factors. 

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. When there are temporary complications within the basal ganglia, it is believed to result in tics.

Diagnosing Tourette’s 

Most people with mild symptoms of Tourette’s tend to go undiagnosed, as their symptoms don’t affect day-to-day life. If symptoms are serious enough to hinder routine activities, however, seeking help and asking for a diagnosis is advised.

According to the NHS, 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.

Teenage boy with Tourettes

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.

Autism

Individuals on the autistic spectrum may also have behavioural problems, learning difficulties and problems with social interaction. All of these could be mistaken for symptoms of Tourette’s. Some autistic people also experience repetitive movement, known as mannerisms, which can be mistaken for tics.

Treatment for Tourette’s syndrome

Treatment for Tourette’s can help those affected better manage symptoms - making day-to-day life easier.

Although Tourette’s is not a psychological disorder, counselling sessions can help people cope with additional social and emotional issues that can result from the condition.

They may have to deal with bullying and labels such as lazy, stupid, naughty, immature and strange. This can result in low confidence and low self-esteem, loneliness and depression. There may be anxiety and frustration around managing daily activities and distress associated with feeling different and a failure.

Paula Newman - MBACP (Senior Accred) Counsellor / Supervisor.

Behavioural therapy

One therapeutic approach that is often used in treatment for Tourette’s is behavioural therapy, which focuses on changing behavioural patterns. There are two types of behavioural therapy that can help reduce tics - habit reversal training and exposure with response prevention (ERP).

Habit reversal involves understanding what feelings trigger the tics and finding a less noticeable way of relieving the urge to tic. 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.

ERP helps people better control their tics. Different techniques are used to recreate the urge to tic so the person with Tourette’s can learn to tolerate the feeling and allow it to pass without performing the tic. 

Medication

There are a number of medications that may support those with Tourette’s, but they will only be recommended if the tics are affecting daily life. Medications can have side-effects and may not work for everyone - 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, 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-help 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:

  • Try to avoid situations that contribute to stress.
  • If it’s possible, have a ‘calm room’ to tic away from others.
  • Get some peer support from others with Tourette’s.
  • Get involved with activities that require concentration, such as playing an instrument or exercising.

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. The NHS recommends behavioural therapy to help those with Tourette's syndrome.

Further help

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