Tourette's can be bait for bullies


Tourette's syndrome can be behind spectacular outbursts of bad language. But that's only one relatively uncommon symptom of the condition, Rebecca Palmer writes.

Being 14 years old is tough enough, what with acne and raging hormones. But when you're also at the mercy of involuntary tics, it's a nightmare.

Squeaking, coughing and twitching contributed to teenage Tourette's sufferer Mark* being badly bullied by his high school peers. "He was getting called Twitchy Boy," says his mother Patricia*.

As his stress increased, he became "twitchier" ? a vicious cycle that culminated in him losing his temper. Classmates learned that "you pick on Mark and he would explode ? a great show for everybody".

He was also "text-bombed" with insults at 5 o'clock in the morning. "He had a really bad year last year, to the point at which I wondered if he might become suicidal."

Now 15, Mark's situation has improved significantly. "He says his frontal lobe has started to develop," Patricia says with a laugh. "He's not quite so quick to fly off the handle. We've got him on medication."

But he did not want to talk to The Dominion Post about the disorder. "He doesn't want to talk about it to us," Patricia says. "He doesn't want to see television programmes about it. As time goes on, he will."

Many of us have probably learned what we know about Tourette's from television. Programmes such as Teenage Tourette's Camp have shown sufferers spontaneously voicing their darkest thoughts and swearing spectacularly.

But involuntary use of obscene language ? known as coprolalia ? is experienced by only a minority of people with Tourette's, Wellington paediatrician Leo Buchanan says. "It's greatly exaggerated."

Dr Buchanan specialises in neurological and behavioural disorders in children and adolescents. In 20 years, he has encountered only one or two people with Tourette's who have had coprolalia. Other patients have produced a remarkable range of vocal tics ? including coughing, honking, barking, hooting, whistling, spitting and hissing.

"If you had in this room 10 people with Tourette's Syndrome, they would have a lot of things in common but they would have a lot of things that were quite different."

The cause of Tourette's has not been fully identified but it is believed to stem from abnormal activity of neurotransmitters in the brain. Last year, scientists in the United States identified a genetic mutation believed to trigger the syndrome. Though sufferers can sometimes suppress their tics, they are likely to suffer more severe outbursts later.

Though having tics is relatively common, Dr Buchanan says people need to have multiple motor and vocal tics to be diagnosed with true Tourette's. They also need to have been suffering from them persistently for at least a year.

Mark certainly fits the criteria. He has a range of both vocal and motor tics, including twitches, squeaks and coughs that can sound like laughs. His tics can change in type and frequency.

"When he was younger, he used to echo words: `I'm going to the dairy, dairy, dairy'," Patricia says. "When he walks, he has a sort of hopping gait."

Efforts to cover up his tics can create problems in themselves. "In an effort to suppress one of his twitches, he curled his lip up. He was getting stick from a couple of teachers ? he looked like he was sneering at them.

"For a while, he hummed a lot. I thought it was just humming but he was trying to cover up another squeak he was making."

He has had tics since he was a small child, she says. "There was always a way to write it off as funny little tics. A lot of kids go through that stage."

She became more aware of them when he was five. The family moved and he changed schools. "He got quite stressed. His tics became more apparent. A friend said: `Maybe he's got Tourette's.' I wanted to slap her."

For years, she told him he just needed to have more self-control. "I thought they were things he had control over. It just got to the stage where we didn't mention the tics."

Mark was finally diagnosed last year, when everything was coming to a head at school. Patricia sought help from a paediatrician, who in turn referred her to Dr Buchanan.

He was diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) ? which helped explain his explosions ? Tourette's and a "degree of Asperger's".

Mark is now on medication for both his tics and ADHD. Patricia is not entirely comfortable with him being medicated, but it is helping his tics. "Right now, when he's 15 and desperate to fit in, it's too hard (not to take medication)."

She has also taken him to a breathing coach, to help him learn to relax. But doing the exercises is a big ask for a teenager.

It could be difficult to have him in a classroom, Patricia says. "It's noisy to sit next to him and I know kids have found that difficult in class. Even I find it difficult to listen to him talking and squeaking.

"I would never take him to a really, really quiet movie. He would sit there and squeak. I'm always careful to seat him between me and his father."

Mark's tics are more apparent when he is at home and "free to let it all go". But they decrease when he is focused on something enjoyable. "He gets his most peace when he's looking at the computer screen. When he's absorbed on an activity, his twitches dissipate."

He particularly enjoys playing online games. "Nobody can tease him about anything. He enjoys the social contact."

Mark has never met another person with Tourette's and Patricia has had little opportunity to talk to other parents. But she recently discovered that a childhood friend had two sons with the disorder and was able to share her experiences for the first time. "It was like unleashing the floodgates.

"Nobody else really understands. They think maybe it's something that could be cured by yoga or something like that."

Dr Buchanan diagnoses one or two cases of Tourette's syndrome a year. He estimates between one in 1000 and one in 2000 children have it. "Some would dispute that, and claim figures as high as one per cent. I think the confusion can occur because of the overlap of transient and chronic tic disorders that don't necessarily meet a full diagnosis of Tourette's syndrome."

Up to 10 per cent of school-age children experience tics at some stage, he says. "Only a minority of those would actually go on to develop a full-blown picture of Tourette's."

To be diagnosed with Tourette's, there must be multiple and persistent vocal and motor tics for at least a year. The combination should also be causing significant impairment in social life and activities.

He cannot recall diagnosing someone who has not had a close relative with tics. It is not unusual for a parent to tell him there is no family history while at the same time exhibiting facial twitches.

Tourette's frequently overlaps with other disorders. "They don't come along with a nice little label." Most children who have it will also have obsessive compulsive disorder, or ADHD or both.

"I would have kids who would require three different types of medication ? one to deal with their tics, another to deal with their ADHD and a third one, in extreme cases, to deal with their obsessive compulsive things."

Such a level of medication is not ideal but a child's situation can be "sufficiently disabling" that it is needed.

Another symptom is anxiety, which can make symptoms worse. "It becomes a vicious cycle."

Behavioural treatment is of limited use, he says. People with Tourette's cannot control their tics to the point they are eliminated. However, behavioural treatments that reduce anxiety can help reduce the severity of tics.

There is no cure for Tourette's, though symptoms can sometimes improve in adulthood.

It is too early to say what will happen in Mark's case, but Patricia is feeling more optimistic about the future.

"He's a good kid. He's just got some stuff that makes life difficult for him."

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