Making your CU accessible - Tourette's syndrome

It is unsurprising if CUs are nervous about students with Tourette’s Syndrome because of the popular stereotype about the condition, which unduly emphasises its most extreme features. So it is important to have accurate information about what to expect from someone with this condition, and what problems they will face in participating in CU activities.

Studies have shown that the chronic struggle of people with Tourette’s leads to enhanced cognitive control, at least on certain tasks. Brain scans of people with Tourette’s Syndrome show enhanced connections in the part of the brain responsible for controlling impulses, developed, presumably, as a result of the continual effort to control the tics.  Other studies have shown that enhanced self-control in the young is an indicator of improved health, wealth and even public safety!  So someone with these qualities could be a real asset to your CU.

Tourette’s Syndrome:

• Inherited neurological condition
• Tics and involuntary and uncontrollable sounds and movements
• May go unnoticed by people close to the person, but at the other end of the spectrum can have a profound effect on the person’s life
• Physical tics may result in self-injury; the condition may affect education, making concentration in class difficult; people with uncontrollable sounds and movements may be subject to bullying or have difficulty finding employment.

Tourette’s facts:

• Estimated 300,000 people in the UK live with the condition
• Average age of diagnosis is 7
• About 50% will see significant reduction in their symptoms as they grow up
• About 50% continue to be affected throughout their lives.
• Genetic condition—more than one member of the family is likely to have symptoms, or to have had them in childhood.
• Parents with affected gene have a 50% chance of passing it on to each child
• Appears to be caused by a disorder of the neurotransmitters in the brain, dopamine and serotonin.

Main features:

• Tics: involuntary sounds and movements
• May be able to suppress them for a time but eventually they have to be “let out”. Effort involved in suppressing them can be exhausting.
• Tics tend to be at their worst between the ages of 10 and 12
• Over 85% of people with Tourette’s Syndrome experience other associated conditions such as Obsessive Compulsive Disorder, Attention Deficit Hyperactivity Disorder and outbursts of rage. These may be more disabling than the tics.

Tics can include:

• Involuntary arm movements which may cause self-harm, such as hitting oneself
• Repeating other people’s words and gestures
• Repeating their own words and actions over and over
• Use of obscene or socially unacceptable language and gestures
• Only around 15% of people with the condition will shout obscene swear words and then only from time to time, but this symptom can be particularly distressing for those who have it

Diagnosis:

• At least one vocal tic and multiple motor tics are present continuously over a 12 month period without a break of more than 3 months.
• No cure, and as severity of symptoms fluctuates over time, hard to evaluate effectiveness of treatment.
• Some evidence that some psychological and behavioural therapies can help to ameliorate the symptoms.
• Other treatments being developed, but too early to say how successfully.
• Some medications may be effective in treating symptoms, especially the associated OCD or ADHD.
• Relaxation techniques such as meditation and aromatherapy may also help.

Practicalities in CU:

• Up to 40% of people with Tourette’s Syndrome have disruptive or angry behaviours, often resulting from an underlying anxiety disorder.
• Anxiety is likely to be at its worst in a new, unfamiliar setting.
• In the unlikely event of student shouting obscenities or swear words, it is probably best to take no notice at all, bearing in mind he or she will be embarrassed and mortified and this behaviour is not deliberate or chosen.
• Predictability, orderliness, and a calm response will set the student with Tourette’s Syndrome at ease.
• A loving and spiritual atmosphere where Jesus reigns and His love is in evidence will in itself have a beneficial effect on a person with Tourette’s Syndrome.
• Assume nothing - always ask.

Additional Resources

www.tourettes-action.org.uk - Organisation providing information and support for people with Tourette’s Syndrome, their families and those who work with them.

This resource is part of our Accessible CU series, created especially for Christian Unions by Through The Roof, a Christian Disability charity. To read this article in full, and other articles on including disabled students, download the student version of Through the Roof's publication Be a Roofbreaker for just £3.