Acceptance is key: living and working with Tourette’s Syndrome

“If you’ve met one person with Tourette’s Syndrome, then you’ve met one person with Tourette’s Syndrome” - Paul Stevenson, campaigner and activist

For Tourette’s Awareness month this year, I wanted to share my knowledge and perspective with other therapists about a condition that is often misjudged and poorly understood, and there is a lack of resources and information out there about it. This is despite the fact that Tourette’s and Tic disorders are actually much more common than people realise. Several famous and successful people are diagnosed with TS, such as musician Billie Eilish, and professional football/soccer player Tim Howard.

Tourette’s Syndrome (full name Gilles de la Tourette Syndrome) is a neurological condition which is categorized by the onset of involuntary motor movements and vocalisations known as tics. These tics can be complex and multifactorial. It is most often accompanied by another neurological condition, known as “comorbidity” - usually OCD (Obsessive Compulsive Disorder) or ADHD (Attention Deficit Hyperactivity Disorder) or both. I personally have OCD and synaesthesia alongside my TS.

I have experience being both a client and a therapist with the condition.
During my counselling training course, I found it difficult and challenging at times to be a Neurodivergent therapist. My Tourette’s was often met with stigma and judgemental attitudes from other therapists about my suitability to practice. I was also met with the difficulty that it is not a condition I have a choice about disclosing - it has very physically obvious symptoms. This made me worry that I would never fit in in the Counselling profession, that I would always be looked down upon and judged, and that my condition made me less of a therapist. I felt very down and isolated. After speaking to other Neurodivergent colleagues I met after qualifying, I discovered that this was quite a common experience for therapists that identify as Neurodivergent. It gave me comfort to know that I wasn’t alone, and it helped me to reframe my thought process around having Tourette as a therapist. I realised it didn’t make me less of a therapist, it made me more of one, relatable, accessible, and unique. I find that clients who suffer from tics/TS tend to seek me out specifically for my lived experience of the condition, and this makes them feel more comforted, as it so often does for other ND conditions.

Misconceptions and judgements are probably the hardest things about having to live with Tourette’s, aside from the fact it is physically very tiring and debilitating.

Here I address some of the most common ones:

Tourette’s is NOT always uncontrollable swearing or shouting out obscene or rude words or phrases. This symptom is called coprolalia and affects only around 10% of TS sufferers. This symptom occurs due to the fact TS affects the amygdala area of the brain, which is responsible for emotional processing. This misconception is due to common portrayals of Tourette’s Syndrome in this way in the media. Everyone experiences the condition in a unique way and expresses unique symptoms. No two TS sufferers will have the exact same set of tics, whilst there may be similarities.

Tourette’s is NOT just a childhood disorder. Many adolescents and adults develop the condition later in life. I myself developed symptoms and was diagnosed aged 14.

Tourette’s is NOT a behavioural condition. This misconception is often brought about by the fact that behavioural therapy is often used to help alleviate, control and reduce tic symptoms, and the shouting and swearing are seen as active, rebellious bad behaviour, particularly in children. It is not something sufferers actively choose to do - tics are uncontrollable and happen at random, and can be made worse by anxiety and stressful situations.

Tourette’s is NOT caused by trauma, however, symptoms can be triggered by it. Tourette’s is a genetic and hereditary neurological condition. Using myself as an example, my Tourette’s symptoms developed after going through a period of heavy trauma during my teenage years. The condition was always there, it just lay dormant in my system until I encountered a trigger. This is a common TS experience. I inherited the condition from my grandad, who was often twitching and jerking and was unable to keep still. Unfortunately, due to a lack of awareness of the condition in his day, this was never picked up, the dots were only joined together when I developed my symptoms.

Tourette’s does NOT stop someone from being able to have a career, be professional or be successful in life. To suggest as much is an ableist attitude, which needs examining.

I feel it is important to put these misconceptions and judgements to one side, and for people to be better educated about the condition. It is likely any therapist will encounter a patient/client with Tourette’s Syndrome or tics at some point in their career and I feel it’s important to know how to work with this and make them feel supported. From my own personal perspective, what I have always found most helpful is acceptance. When I feel supported and accepted for who I am, I find I become more confident and more relaxed, and my tic symptoms are much reduced. If I feel I am being judged or there is pressure on me to stop ticcing, I become much more stressed and agitated, and ironically it becomes much harder for me to suppress and keep under control. Try not to draw attention to a person’s tics, unless it is welcomed, as the pressure of this only increases and makes them harder to ignore and control.

Different TS sufferers also have different coping strategies that work for them - some take medication, have something to focus on and channel physical energy like a fidget toy, mindfulness, meditation, thought and behavioural exercises - it all depends on what works for the individual. I personally find chewing gum and listening to music very helpful. Ask the individual in question for anything specific that they know helps them to feel more comfortable. There are certain things that trigger tics and make them worse, such as smells, sounds, and colours - remember to check in about this and remove anything that will make tic symptoms worse.

If a patient/client is relatively new to having tics/Tourette’s Syndrome, psychoeducation can often be helpful to help alleviate anxiety and uncertainty. However, a key point to bear in mind is to remember what the patient/client is seeking therapy for at the time, which may not have anything to do with their tics. Acceptance and respect for what the person needs from you at the time are key.

I hope this helps to provide the therapy community with more knowledge and awareness, and feel more confident and comfortable encountering Tourette’s Syndrome.