Tourette Syndrome (TS)
Tourette Syndrome (TS), is a neurodifference that is characterised by repetitive, involuntary movements and vocalisations called tics. Tourette Syndrome often begins in childhood, but the tics and other symptoms can improve after several years and sometimes go away completely. The exact causes of Tourette Syndrome are not fully understood, but it is believed to involve a combination of genetic and environmental factors. It is important to note that individuals with TS can lead successful and fulfilling lives, and should not be defined by their neurodifference.
By increasing awareness and understanding, we can reduce social stigma and help to provide support for those with TS.
“Whilst the majority of people have heard of Tourette Syndrome, many do not really understand what it entails... The media often portrays TS as the swearing condition and the true realities of what it's like to live with the condition are rarely shown. If we were to educate more, be that in schools, workplaces and general advertising, we would hopefully eradicate a lot of the misconceptions around TS.”
- Tourette’s Action, 2023
What is Tourette Syndrome (TS)?
Tourette Syndrome is a neurodifference that affects the nervous system and causes involuntary movements and sounds known as tics. These tics can be classified as simple or complex. Simple tics are sudden, brief, and repetitive movements or sounds that may include blinking, throat clearing, or sniffing. Complex tics involve a series of movements or sounds that may appear purposeful, such as jumping, twirling, or repeating words or phrases.
TS may co-occur with other neurodifferences such as attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), anxiety, depression, or other learning differences.
With proper diagnosis, treatment, and support, individuals with TS can thrive at work and in daily life. Treatment options may include medication, behavioural therapy, or a combination of both.
Some common symptoms of TS can include:
Shoulder shrugging
Jerking of limbs
Eye rolling
Frequent touching of objects
Grunting or whistling
Saying random words or phrases
People with TS Can Have Many Talents:
Whilst there are areas in which individuals with TS may experience challenges, such as hyper-arousal (which can then lead to tiredness), or distractibility, many individuals with TS have increased ability in areas such as creativity, verbal communication, hyper-focus, and many more, including:
Artistic abilities: Individuals with TS may have a natural talent for art and may be skilled in painting, drawing, or sculpting. Their tics may even inspire their artistic creations.
High energy levels: People with Tourette syndrome often have high levels of energy and enthusiasm, which can help them excel in activities that require focus and dedication.
Resilience: Individuals with Tourette syndrome often develop strong coping mechanisms and resilience in the face of adversity, which can help them navigate difficult situations.
Focus and determination: Despite the challenges of living with Tourette syndrome, many individuals are able to focus on their goals and remain determined to succeed in their pursuits.
Causes of Tourette Syndrome
The exact cause of Tourette Syndrome is unknown, but research suggests that it may be a combination of genetic and environmental factors.
Studies have shown that there is a higher likelihood of TS in individuals with a family history of the neurodifference, indicating a genetic component. However, the specific genes involved are not yet fully understood.
Environmental factors, such as prenatal and perinatal complications, may also play a role in the development of TS.
It is important to note, however, that not all individuals with a genetic predisposition or exposure to certain environmental factors will develop TS, and further research is needed to fully understand these components.
Common Traits Associated with Tourette Syndrome
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Motor tics are involuntary movements that can affect any part of the body. Some common motor tics may include blinking, facial grimacing, head jerking, shoulder shrugging, or repetitive hand movements. Motor tics can be simple or complex, and can involve multiple muscle groups.
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Vocal tics are involuntary sounds or words that are produced by the vocal cords. Some common vocal tics may include throat clearing, grunting, coughing, and repetitive speech. Vocal tics can be simple or complex, and can involve the use of multiple words or phrases.
It is important to note that not all individuals with TS will experience both motor and vocal tics. In some cases, only one type of tic may be present. The severity and frequency of tics can also vary greatly between individuals.
Diagnosis of Tourette Syndrome
To be diagnosed with TS, multiple motor tics and at least one vocal tic must be present for at least 12 months. Tics must have occurred many times a day or on and off for longer than one year, and there should not have been a tic-free period of more than three months.
It is important to note that tics can be transient and may not be present during a diagnostic evaluation. Therefore, it is important to obtain a thorough history from the individual and their family members to identify any past or current tics.
The use of imaging studies, such as magnetic resonance imaging (MRI) or computed tomography (CT) scans, are used to rule out other conditions that may be causing the tics.
The diagnosis of Tourette Syndrome can be challenging, as it requires a careful evaluation of the individual's traits and medical history. However, with a thorough assessment, individuals can be accurately diagnosed.
Living with Tourette Syndrome
Living with TS may present challenges, but with the right support and understanding, individuals can thrive. Here are some ways individuals with TS can receive support:
Medication: Some individuals with TS may benefit from medication to manage their tics. It is important to work closely with a healthcare professional to find the right medication and dosage for your individual needs.
Therapy: Therapy can be helpful in managing the emotional and social challenges that come with TS. Cognitive-behavioural therapy (CBT) can help individuals to develop coping strategies and reduce anxiety and stress.
Support groups: Joining a support group can provide a sense of community and understanding. It can be comforting to connect with others who are going through similar experiences and can offer advice and support.
Education: Educating ourselves and others about TS can help reduce stigma and increase understanding. It can also help individuals to advocate for their needs and rights.
Self-care: Taking care of yourself is important in managing TS. This can include getting enough sleep, eating a healthy diet, and engaging in physical activity. It can also mean taking time to relax and recharge.
Let’s Look at a Case Study:
We thought we'd take a look at a case study of a celebrity in the media, Lewis Capaldi, who has been diagnosed with TS.
"I have Tourette's, I've always had it, apparently." - Lewis Capaldi, talking to BBC News
You may have seen a recent documentary released on Netflix called 'How I'm Feeling Now'. This programme takes a behind-the-scenes look at Scottish musician Lewis Capaldi’s life. Capaldi was diagnosed with TS in September 2022.
In the programme, Capaldi talks openly and honestly about his mental health, challenges alongside his rise to fame, and the impacts of Covid. He also talks about his experiences with involuntary movements during the programme, and mentions he 'twitches every single day'. During a conversation with his father, Capaldi explains that these involuntary movements seemed to become more intense as his show progressed, following him through his tour and resulting in it impacting a certain performance at Wembley, live on stage.
Towards the end of the documentary, his mum explains that when Capaldi was younger, he would blink all the time and make occasional noises, but these symptoms went away at the age of around 5/6. The twitching that Capaldi was experiencing throughout his day-to-day began to impact him in his life. The family began to look for answers, and Capaldi only learned he has TS in 2022. Capaldi explains it all makes sense to him now, he has answers and support.
Hopefully this programme shares some insight into how we should not judge individuals, and that everyone's journey is personal to them. We found it very poweful and educational.
Download our Tourette’s Information Sheet:
This information sheet has been created by our team of expert psychologists, and provides information about TS, common challenges, and suggestions of the support available.