Tourette's Syndrome

What is Tourette's Syndrome?

Tourette's Syndrome (TS) is an inherited neurological condition characterised by involuntary sounds and movements known as tics. These tics must persist for at least 12 months to meet the diagnostic criteria for TS. The condition is more prevalent among boys and affects approximately one school child in every hundred. In the UK, over 300,000 children and adults are living with TS.

Symptoms of Tourette's Syndrome

The key features of TS are tics, which can be both motor (involving movement) and vocal (involving sounds). Common tics include:

· Motor Tics: Blinking, facial grimacing, shoulder shrugging, and head or arm jerking.

· Vocal Tics: Throat clearing, grunting, sniffing, and verbal outbursts.

These tics can vary in frequency and severity and may change over time. Additionally, up to 85% of individuals with TS experience co-occurring conditions such as:

· Attention Deficit Hyperactivity Disorder (ADHD)

· Obsessive Compulsive Disorder (OCD)

· Anxiety

Prevalence of Tourette's Syndrome

TS affects one school child in every hundred, with boys being more commonly affected than girls. Over 300,000 people in the UK live with the condition. While the long-term impact of TS varies, approximately half of children diagnosed with TS see a significant reduction in their symptoms as they approach adulthood. For others, the condition may continue throughout their lives, but symptoms often wax and wane.

Dispelling Myths About TS

Tourette's Syndrome is often misunderstood. A common misconception is that all individuals with TS exhibit 'coprolalia'—the involuntary swearing or saying of socially inappropriate things. In reality, coprolalia affects only a minority of people with TS. In fact, 90% of individuals with TS do not have coprolalia.

Are staff at Educate U trained on how to support children with Tourette’s Syndrome?

At Educate U all our staff are trained in Tourettes Awareness every two years and we follow training guidance by Tourette Action.

Advice for Parents

1. Seek Professional Diagnosis and Support

Early diagnosis and support from healthcare professionals can make a significant difference. Consulting with neurologists, psychologists, and other specialists who understand TS is crucial for managing the condition effectively.

Keep a dated record of any tics you notice to support your conversations with medical professionals.

2. Educate and Advocate

Understanding TS and educating those around you can help create a supportive environment for your child. Advocacy can lead to better accommodations not just at school and in other settings. Tourette’s Action do an incredible e-learning (certified) free course which takes around 45 minutes to complete Understanding Tourette Understanding Tourette Syndrome - Overview (tourettes-action.org.uk). 

3. Connect with Support Networks

Joining support groups and networks, such as those offered by Tourette Action or via facebook/Instagram and other social media platforms, Support groups can provide valuable resources and a sense of community for both parents and children.

4. Focus on Strengths and Talents

Encourage your child to pursue their interests and talents which boost their self-esteem and provide positive outlets for their energy and creativity. For more detailed information and support, we recommend that you visit the Tourette Action website.