Tourette Syndrome, the 'extra' factor

By Kate Liptrot, the York Press.

When told her eight-year-old son, Sam, had Tourette's Syndrome, Claire Findlay and her family struggled to cope with the diagnosis.

“It’s difficult coming to terms with it in the first place,” she said. “The process of coming to terms with and researching Sam’s condition has been a long one. We are still learning new things all the time and it’s been eight years.”

The difficulty in knowing what to do next is an experience faced by many families dealing with the sometimes socially challenging neurological condition thought to affect one schoolchild in every 100.

Tourette’s Syndrome is characterised by a combination of involuntary noises and movements called tics, but the condition can be different for each person and can often be linked to other conditions such as OCD and ADHD. For Sam, Tourette’s Syndrome means he often repeats actions or phrases, and can involuntarily swear.

Now 16, he is doing very well – studying to be a chef at York College, with ambitions to run his own restaurant, and working part-time in the kitchens of the Melbourne Arms near Pocklington.

But it has been a long journey for Sam, who was told to stop coming into a previous job because the manager said he was making “annoying noises” and was sometimes deliberately goaded by other children at school, triggering his tics to the extent it would hurt him. The problem became so bad he had to wear boxing training gloves to school at one stage to avoid harming himself.

“Sam would come through the door having been so wound up on the bus he was hitting things, hitting the walls, not through temper but through the tic,” Claire said.

“School life for Sam was not easy. It was very difficult in the beginning to make school understand that what Sam was doing was not his fault.

“While we were coming to terms with it, we had school constantly telling him off and on one occasion telling us to take him home. They just didn’t know how to deal with it.

“Sam experienced a quiet period with his tics until he was 11 when they exploded.

“Needless to say, the school didn’t cope very well at first and it’s been a bumpy ride ever since, although through it all we had a close relationship with his head of year and she has been brilliant along with some other key members of staff.

“Awareness in education is so important. It took years to find the strength to fight for Sam, to make sure he got the education he deserved.”

When she looks back at home videos, Claire can see the signs of Sam’s Tourette’s Syndrome as young as three or four-years-old through his blinking, nose rubbing and sniffing.

Diagnosed with ADHD at six, his tics seemed to be triggered by his medication for the condition, and he was diagnosed with Tourette’s Syndrome two years later.

His family has found many people working with young people – from teachers to doctors – often have little understanding of his condition.

But it was about two years ago, after years of the family coping on their own, Claire said they started meeting other people with the condition through the charity Tourette’s Action.

“I have met so many fantastic people who have either been through, are going through, or are just about to start the journey we are on,” Claire said. “I can’t explain how it feels to be in the company of this new family. Everyone just gets it. There are no explanations, no judgement and no stress.”

Claire, her husband, Adam, and Sam now coordinate The North Yorkshire Tourette’s Action support group and Sam has featured in last year’s series of The Food Hospital, which worked on his diet to make a difference to his condition.

To the families of other children diagnosed with Tourette’s Syndrome, Claire said: “Remember they are still the same child. They have not changed. It just happens there’s a little bit something extra there that is never going to be the same as it changes all the time. Take it as it comes.”

For more information or to find your local support group, visit www.tourettes-action.org.uk/10-ta-groups.html

Tourette’s Syndrome The facts

• Someone with TS may be able to suppress their tics for a period but eventually they have to let them out

• Tics usually start in childhood at about the age of seven, and are usually worst between ten to 12 years. In approximately half cases, most symptoms disappear by the age of 18

• More than 85 per cent of people with TS have more than just tics. Additional conditions include obsessive compulsive disorder (OCD) as well as attention deficit hyperactivity disorder (ADHD). Children and adults may also suffer from “rages”

• Affects include copropraxia, the making of obscene or otherwise unacceptable movements or gestures; coprolalia, using obscene or unacceptable language; coprophenomena, the involuntary expression of socially unacceptable words or gestures and echophenomena - repeating other people’s words and other people’s gestures (echopraxia)

• It is commonly assumed that everybody with TS swears. However, only ten per cent of people with TS have a swearing tic.