Differently Wired Hub - Tourette's Syndrome- Foothold

What is Tourette's Syndrome?

Tourettte’s Sydrome (TS) is an inherited neurological condition that affects over 300,000 adults and children in the UK.

The key characteristics of Tourette’s Syndrome are tics. These are repeated involuntary sounds (vocal tics) and movements (motor tics) that occur in almost any part of the body and which can be very difficult to control.

Tourette’s exists on a spectrum with other Tic disorders. To be diagnosed with Tourette’s, a person must present multiple motor tics and one or more vocal tics for at least 12 months, not necessarily at the same time.

Tourette’s Syndrome is often misunderstood as a condition which makes people swear or say inappropriate things. Although it’s true that ‘coprolalia’ (the clinical term for involuntary swearing) is a symptom of Tourette’s, it is only present in 10% of those diagnosed with the condition.

Tics usually start in childhood and often fluctuate in severity and frequency. They can be influenced by environmental factors such as stress, excitement and relaxation.

They can be divided into Simple and Complex categories. Common motor and vocal tics include:

Simple

Motor

Eye blinking

Eye rolling

Grimacing

Shoulder shrugging

Limb and head jerking

Abdominal tensing

Vocal

Whistling

Throat clearing

Sniffing

Coughing

Tongue clicking

Grunting

Animal sounds

Complex

Motor

Jumping

Twirling

Touching objects and other people

Obscene movements or gestures (copropraxia)

Repeating other peoople's gestures (echopraxia)

Vocal

Uttering words or phrases out of context

Saying socially unacceptable words (coprolalia)

Repeating a sound, word or phrase (echolalia)

Many individuals with Tourette’s Syndrome experience a ‘premonitory urge’ before a tic – a physical sensation similar to the need to itch or sneeze. Many people are also able to supress their tics for a short period of time, although some find this easier than others. It can become less difficult to supress tics with practice.

Up to 85% of people with Tourette’s Syndrome also experience co-occurring conditions such as Obsessive Compulsive Disorder (OCD), Attention Deficit Hyperactivity Disorder (ADHD), anger/rages, and anxiety.

Strengths of Tourette's Syndrome

Whilst there are many challenges that come with Tourette’s Syndrome, individuals with Tourette’s are also known to present certain strengths.

They are often:

Perceptually acute

Creative

Energetic

Successful in and quick to complete tasks they enjoy

Empathetic

Challenges of Tourette's Syndrome

Challenges of Tourette’s Syndrome include:

Difficulty consistently inhibiting thoughts, feelings and/or actions (disinhibition)

Struggles with written communication (poor, slow handwriting)

Anxiety and fear of taking risks

Difficulties processing auditory and visual information

Difficulties with executive functions (things like organisation and time management)

Difficulties maintaining concentration

What to do if you think you might have Tourette's Syndrome

As with all neurodiverse conditions, the first step is to do your research and learn as much as you can about the condition.

We all experience challenges with different behaviours and tasks, but if you find you notice the characteristics of Tourette’s Syndrome more prominently in your own experiences – and importantly, it is having a significant impact on your life – it’s best to take action to get support.

There are a number of methods that are currently used to help people with Tourette’s to manage their symptoms. However, different approaches might not be right for everyone, and each is only around 50% effective.

Behavioural therapies provide tools that can help individuals learn ways to change certain behaviours. Cognitive therapies can also help them change the way they think about and process these behaviours.

Medication can also be used to help reduce the frequency and intensity of tics for a period of time. People within the Tourette’s community advocate using other approaches to help manage symptoms as well, including changing diet and exercise habits.

The use of neurosurgery to treat severe Tourette’s is currently being trialled.

Visit the ‘What to do if you believe you might be neurodivergent’ page for more information.

Need support?

We know that when you’re struggling emotionally, practically and financially, often the hardest step to take is reaching out and asking for support. And these challenges can have even more of an impact if you’re neurodivergent. But everyone experiences challenges in life, and it’s important to remember that you are not alone – after all, there are thousands of neurodiverse engineers just like you around the world, many of whom may be in a similar situation.

Our support is here to help you live better and thrive – whatever your circumstances. So if you’re ready to get in touch with us, we’re ready to listen to your needs and offer whatever support we can.

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