“How did the exam go?” I asked my Son as he threw his school bag on the floor. “Terrible” he replied “A girl in the room has Tourette’s, which meant she kept grunting a lot and I couldn’t concentrate – she even swears as well but doesn’t get told off!“ This was fifteen years ago now and the first time I had ever heard of Tourette’s. My concern at the time was to find out why this girl was allowed to take the exam in the same room as the rest of the school if she had a disorder. It turned out that other parents had the same questions, but we were told that even though Tourette’s was recognised as a disruptive disorder, it was not enough to exclude the girl from the school or lessons. We were told it was very rare and was defined under the spectrum of tic disorders so nothing could be done.

It is only recently that I have thought about this girl and what her life must have been like as a teenager. Last year, Tourette’s syndrome was highlighted when another sufferer called Peter won Big Brother on Channel 4 in Britain. For weeks I watched his bizarre behaviour with fascination and wondered what caused it and was there any treatment?

Tourette’s Syndrome (TS) is a neurological disorder characterized by tics. Although not always correctly identified because most cases are mild, recent medical research shows than between 1 and 11 children per 1000 have Tourette’s. As many as 1 in 100 children have the more common Tic Disorder which includes eye blinking, coughing, throat clearing, sniffing and facial movements. Tourette’s or Tic Disorder sufferers have a normal life expectancy and intelligence and most children’s symptoms decrease as they pass through adolescence, with Tourette’s in adults very rare. Tourette’s was named in 1885 by French physician and neurologist Georges Albert de la Tourette, who published an account of nine patients under his care. Symptoms include involuntary, rapid or sudden movement and vocalization that occurs many times a day (usually in bouts) and the onset is always before the age of 18. TS is found in all social, ethnic and racial groups and has been reported all over the world. People with TS will feel an irresistible urge to perform their particular Tic and some sufferers can hold back for hours at a time, but this will only lead to a stronger outburst later on.

Vocal Tics actually only make up less than 30% of TS sufferers and they are not exclusively swear words. It is more an overwhelming urge to use inappropriate or unacceptable words or phases and often even friends and family find it hard to believe that they are not said deliberately. Repeating one’s own words or the words of others are more common than taboo words but the vocal tics are what make Tourette’s Syndrome different from Tic Disorder. Although research continues into this complex disorder, it has been proven that parents have 50% chance of passing on the gene and there is overwhelming evidence that Tourette’s is inherited. Studies have not identified the actual gene, but research has shown that girls from a TS sufferer with the gene have 70% chance of showing symptoms, while boys have 99%. Also researchers have found that people with TS are more likely to also show signs of Attention Deficit and Hyperactivity Disorder (ADHD), Obsessive Compulsive Disorder (OCD), Difficulties with Impulse Control (DIC), Dyslexia and various sleep disorders. So whilst this disorder cannot be transmitted by environment, infection or non–genetic paths, there are still some TS sufferer’s who develop the disorder without any history in the family. This is known as Sporadic Tourette’s Syndrome (STS) or Tourettism, because a genetic link is missing. Although there is no such thing as a typical case of Tourette’s syndrome, the condition follows a similar course in sufferers. The most typical age of symptoms is 5 to 7, with the highest severity between 8 and 12. There is then a steady decline through adolescence with most symptoms actually disappearing in adulthood. Along with the most common tics like eye blinking etc, there is also body movement, mainly in the head and neck, although hand flapping is also typical. The movements or sounds occur intermittently and unpredictably, sometimes rapidly in the space of an hour but sometimes it is dormant for several days.

There are no specific medical or screening tests that can be used for diagnosing Tourette’s and often patients, especially children, can control the tics whilst in a doctor’s room. Observation (usually without the patient knowing) and family history are the best way to diagnose Tourette’s and it is usually over a period of a year or more before confirmation is given. Mild cases are not usually referred to a specialist clinic, so that studies can be carried out on the more severe cases. Medication is available, although it doesn't work for all individuals and some have suffered significant adverse effects. Education of the patient, their family, friends and school is often all that is needed in mild cases. Relaxation and meditation classes have also been found to help along with habit reversal treatment. Exercise and yoga help to relieve the stress that may aggravate tics and has proved to be very successful in all cases.

While once thought to be very rare, TS is now recognised throughout the world where most patients had previously gone undiagnosed. A register in 1973 reported only 485 cases worldwide, but in the year 2000, 64,000 children aged 5–18 had been registered in the UK alone, with 530,000 in the US, although most were mild cases. Some people think that Mozart had Tourette’s syndrome, but this has never been proven, while others think that Dr Samuel Johnson who wrote A Dictionary of the English Language in 1747 certainly had it.

Having found out all the information about Tourette’s syndrome, I feel quiet sorry for the girl in my son’s school all those years ago. It must have been very hard for her to try and control her disorder while under the stress of the exam room and well done to her parents for sticking it out. Thank goodness for medical research these days so we can recognise these things today and not judge people by their actions or words. As you now know, they may not be able to control it!