Fighting The Devil Inside
(Reproduce with kind permission - The Courier and Advertiser, Tuesday, October 20, 2009)
TOURETTE SYNDROME, a neurological disorder that causes both vocal and physical tics, used to be considered a rare condition. However, it's now thought that it affects around one in every hundred people - many of whom don't realise they have it. Some local families talked to Ursula Pool about the impact a diagnosis of Tourette's has had on their lives.
Janice Mylan first noticed that there was something unusual about her son, David, when he was four years old. "He had quite a lot of vocal things that were odd, that just didn't have rhyme or reason to them, and it was more than just a kid being imaginative," she says.
"He also had a stutter for a while as well, and then he would blink a lot, and everyone would talk about David's nervous habits. And he would talk about the devil inside of him making him do things he didn't want to do - which was scary stuff."
Janice sought help to try and find out what was causing David's behaviour, but finding answers proved frustratingly difficult.
"The put it down to the terrible twos, even though he was beyond that. Then they put it down to a neurotic mother - they thought I was being over-paranoid about the problems."
David's problems grew worse over the next couple of years. "He was becoming more anxious, and he started to make more and more noises, and he had more and more of what we know now are tics..."
Janice and her family had never heard of Tourette Syndrome, and only found out about it by chance one day when they were away on holiday during David's second year at primary school.
"We saw Casualty on TV when we were at our parents' house that Christmas, and there was a case on there where a little boy had come in and he was squeaking like a mouse, and he was blinking.
"And we were sitting watching, and David was squeaking like a mouse....and we all just looked at each other. And when they discovered at the end of the programme that this was Tourette's, we wrote it down - not even knowing how to spell it."
David had already been seen by an educational psychologist that spring, who had merely sent Janice and her husband away with leaflets about good parenting. However, after seeing the Casualty episode Janice went back to David's school to raise the issue with the head teacher once again.
It took until the following April for David to be diagnosed with Tourette Syndrome, says Janice. "And by this time we had a son who was agoraphobic and could hardly go out of the house, and actually became suicidal."
Tourette Syndrome was first documented in 1884 by French doctor Georges Gilles de la Tourette, who described the condition he'd observed in nine of his patients as, maladie des tics. The syndrome is characterised by involuntary muscular and vocal tics.
Although it's often associated with swearing, only around one in ten people with Tourette's has this as a symptom. Other vocal tics can include throat-clearing and coughing as well as the involuntary production of words and phrases.
The severity of symptoms varies between individuals and, particularly in children, can be mistaken for anti-social behaviour.
Fiona's son Robert started showing symptoms at nursery-age, but wasn't diagnosed with Tourette's until he was in high school, she says.
"I didn't know what it was, or why he was behaving like this," she says. "I thought he was being badly behaved, to be honest, so I was giving him a hard time. And then he was feeling frustrated and saying to me, 'Mum, I can't help it.' And I would go, 'Don't be ridiculous, of course you can, behave yourself!'
"When he started primary school, it was just endless phone calls having to go into school because he was making animal noises and climbing under the tables. The school kept pulling me in, and I felt as though they were blaming me. They just thought I was a single parent letting him away with everything, not bringing him up properly, and I felt so terrible. At that point I tried to get the school psychologist but they kept saying that there was nothing wrong with him."
When Robert was 12, he was being so severely bullied that Fiona took him out of school, and it wasn't until he was 13 that he was diagnosed with Tourette Syndrome. "And by that time, it was far too late."
The impact on Robert of having his symptoms written off as bad behaviour has been devastating for him, she says.
"How they dealt with it at school was to put him out of the class. I know my son's an intelligent lad, but he can't read or spell properly because he was never in a classroom the whole of primary."
It isn't known what causes the abnormality in brain functioning that leads to the symptoms of Tourette Syndrome, and there is no cure for the condition. There is evidence of genetic involvement, but scientists can't yet explain why one person develops it and another doesn't.
Theresa's son, Martin, was suspected of having Tourette Syndrome as a four-year-old, and a home visit from a psychiatrist specialising in Tourette's revealed that it wasn't just Martin who was affected by the condition, says Theresa.
"She came to have a look at Martin to see why he was reacting the way he was, so we could finally get some answers, and at the same time she was in our house she noticed my daughter. My daughter had had a nose twitch since she was born - we always called her Sabrina, because of the witch with the twitchy nose."
It turned out that not only did Martin have Tourette Syndrome, but Theresa's daughter was affected by the condition, too, and Theresa herself was also identified as having a mild form of Tourette's.
Grace (17) also has Tourette's in the family - her brother Andrew is severely affected by the condition, although her sister Joy is not affected at all. So when she started showing symptoms, she was already familiar with what they might mean, and was diagnosed with Tourette Syndrome when she was in primary school.
"It was really mild at first," she says. "Just twitching my nose, or occasionally saying something I didn't mean to say. The it gradually got worse and worse, and especially over the last year it's got much worse."
Like many people with Tourette's, grace is engaged in a constant struggle to suppress her tics in public; particularly her vocal tics. "You'd never notice I had it normally. I wouldn't even let my friends see me as bad as you've seen me today." she says.
Grace has become adept at disguising her symptoms, but she admits that the strain of doing so can become overwhelming.
"I was really depressed for about a year and a half. I was suicidal. I was just so upset all the time, because I thought, 'I can't do this any more - I just can't hold it in any more.' It's awful.
"It's a horrible feeling. It's like when you have a sneeze coming, and you're trying to hold it in but eventually you just have to do it. You just can't stop yourself. This is how it's been for me over the last year; it's just got worse and worse and worse."
When I ask whether she'd prefer it if she could just allow her tics to happen naturally, rather than struggling to suppress them, her response is immediate and decisive: "Yes. If you hold it in it winds up and winds up, and the outburst is worse. You'll do more than you would have done if it was just a wee nose thing, or a wee shoulder thing.
"It's like it just comes out of you. You know when you get a shiver down your spine? It's that sort of thing; it's horrible, you just can't stop it. And anywhere you go, it's hard, because you're trying to suppress it. You don't want people to look at you in the street. No one does."
For Grace, as for many people with Tourette's, one of the most debilitating aspects of the condition is not the tics themselves, but the lack of empathy with which other people - the general public as well as some medical professionals - often react to them.
A little tolerance and understanding can make a big difference to the way a child with Tourette's develops, says Fiona. "Robert believes there's actually nothing that wrong with him. Because Robert can accept his Tourette's. He'll shout and he'll tic, and that's not a problem. It's other people's reactions to him that have made him what he is today.
"And it could have been so different for him. If he'd had a correct diagnosis when he was four, and they'd brought in help for him, his life would be totally different. So awareness to me is everything."
**Some names have been changed.