Just a tic?
If you try to stop yourself blinking, you may manage it for 10 seconds, or a minute, or five minutes," says child psychiatrist Dr Uttom Chowdhury. "But sooner or later you will have to blink." And if, during your experiment in not blinking, you also attempt to read this article and find a few things to worry about - Did you take the damp clothes off the electric heater? Did you feed the cat? - you will realise how children with Tourette syndrome feel as they struggle to concentrate and stop their tics in the classroom.
WHAT IS IT?
A 19th century French doctor, Gilles de La Tourette, first identified the disorder that bears his name. Its main symptom is muscular tics: involuntary twitches. These can affect any part of the body and can be as frequent as every few seconds.
Many people with Tourette syndrome also have vocal tics: they may bark or grunt, come out with short, inexplicable phrases like "Oh boy!", repeat what has just been said, either by themselves or by someone else (echolalia), or swear (coprolalia). Swearing occurs in 20 per cent of cases: far fewer than in popular imagination.
Tourette syndrome runs in families. Its cause is neurological: probably a fault in the basal ganglia, deep in the brain. Three times as many boys as girls show symptoms. Its incidence is now put at 1 in 100 - far more than the 1 in 1,000 quoted until 10 years ago - due to growing awareness among families, doctors and schools.
The condition generally starts in primary school and peaks at the ages of 10 to 14. It often improves in young adults, probably due to a combination of actual tic reduction and better social disguise. However, some find their tics worsen and last a lifetime.
RANGE OF DISORDERS
Children who have only Tourette syndrome are rare. As many as three-quarters also have attention difficulties (see SN Extra, November 2004) and sizeable numbers will be dyslexic andor dyspraxic. At least half will also suffer from obsessive compulsive disorder (OCD), in which intrusive, often unpleasant thoughts and fears (obsessions) come into the child's head, which the child believes can only be warded off by ritual activities (compulsions).
With such an assortment of difficulties, detailed and regularly updated psychological assessment of these children is vital, says Dr Isobel Heyman, a child psychiatrist specialising in Tourette syndrome and obsessive compulsive disorder at London's Maudsley and Great Ormond Street hospitals.
When a child fails to concentrate in the classroom, the reason may be that she or he has an attention problem, she explains. But it may be that the child is being constantly interrupted by tics, or distracted by obsessions, or a combination of all three.
"It's important to work out the difference, because we treat tics in a diametrically opposite way to how we treat obsessions," she says.
"The difficult thing is that diagnosis sometimes takes years, and until then the child can be very difficult for the school to understand. These children are often hard-working and compliant, and everybody may be very confused when they suddenly start refusing to do certain things, or disappear to the toilets for long periods."
The crucial fact about Tourette syndrome tics, says Dr Chowdhury, consultant child psychiatrist, Bedfordshire and Luton NHS Trust, is that children cannot control them. Medication can damp them down, but it can cause serious side effects, such as depression.
Children need to learn to live with their tics. They may be able to hold them back for short periods, and in some situations they may decrease in intensity - for example during physical and mental absorption, perhaps in sport or while playing a musical instrument. But eventually the child will have to release them.
Stress does not necessarily increase tics, though children may tic more if they feel under pressure not to do so. (Similarly, saying "Don't do that" to a child with the syndrome sometimes acts as a prompt to them to do it.
They need positive instructions: "Move away from the fire," rather than "Don't go near it.") For some, relaxation brings tics out: parents say their children tic most intensely when they get home after school.
The difficulty for everyone thinking about how much control these children have, says Dr Heyman, is that while they cannot control their tics for any length of time, they can and should be helped to control their obsessions and compulsions. Obsessive compulsive disorder symptoms are anxiety-related, she says.
"One of the main OCD treatments is helping the child and the family learn that they don't have to do the rituals, which means not being scared of anxiety, learning that anxiety will go away whether you do the ritual or not.
"The main thing with the ticcing child is to help everybody understand that tics can't be helped and are best ignored."
For a teacher, neither ignoring tics nor reducing anxiety is at all straightforward. "Complex motor tics can be quite alarming. The child may stand up, jump out of their seat, spin round and sit down again. They may whinny or bark. There might be a totally out of context gale of laughter," says Dr Heyman.
"If a child has OCD they may repeatedly ask questions and seek reassurance, which can drive teachers mad. Every couple of sentences they may say, 'Am I doing this right?' I have treated children who scribble out pages of work or rip it up because they feel it isn't good enough."
When one child creates this much agitation, inclusion in mainstream can be extremely difficult, says Dr Roger Burland, psychologist and director of Chelfham Mill, a Devon special school for boys with emotional and behavioural difficulties.
He regularly sees pupils with Tourette syndrome excluded from mainstream.
"It makes teachers tense, because any bizarre behaviour does. And if the tics are vocal, whether there are obscenities or not, other children quite understandably object. They say: 'No one is doing anything about this child. Nobody is sending him out or putting him in detention.' And it takes a bit of believing if you tell them he can't help it."
Another difficulty is that the tics change every few months. Children will develop a new tic just as staff find ways of tolerating the old ones. Tics are distracting, they make everyone anxious, and they inevitably bring out tensions between children. Children with Tourette syndrome are often bullied, according to the Tourette Syndrome (UK) Association and, adds Dr Chowdhury, they may exacerbate staffroom tension, too. "Teachers talk to each other and say, 'He doesn't tic in my lesson, so he must be putting it on,'" he says.
HOW TO HELP
One reason why teachers say such things, and why they continue to write school reports criticising students with Tourette syndrome for fidgeting or going to the toilet, says Dr Chowdhury, is because there is no training either for teachers or assistants in helping children with the condition.
However, there are many useful books and websites (see below).
The initial advice for dealing with Tourette syndrome is relatively straightforward. Never reprimand or punish a child solely for a tic. (Tics are not inappropriate behaviour for the child.) Create physical space, in a non-distracting area for the child in the classroom. (Dr Burland of Chelfham Mill school has experimented with booths, one-way mirrors and microphones, so the child can see what is going on and contribute, without feeling exposed to ridicule).
Give the child a pass or agreed signal so they can leave the classroom without drawing attention to themselves when they need to release their tics. If they tap on desks or chairs, give them foam rubber coverings. If they fidget, give them a soft ball to squeeze. Above all, model a positive attitude: any hint of impatience or criticism from the teacher will be taken as permission by other children to do the same or worse.
Adolescents with Tourette syndrome and OCD are vulnerable to poor self-esteem and self-harm; they need encouragement and help in finding things they do well - though not praise for "perfect work", which may make OCD children still more driven.
Informing supply teachers, bus drivers and lunchtime supervisors of the background to Tourette syndrome and agreed strategies for particular children is crucial. Ask parents to tell the school about changes in medication and new tics. Give children access to mentors or counsellors.
Plan ahead: assemblies and quiet library times can be intolerable for a self-conscious ticcing teenager; reading aloud, interrupted by vocal tics, may humiliate a younger child. School plays, tool and oven use in technology can be tricky.
A separate room may be needed for timed tests, which can overwhelm these children, to prevent them distracting others. School trips also need planning: Dr Burland recalls escorting a child whose tics included kissing cars.
The peers of a child with the syndrome need to know enough to understand that the child cannot help the tics, but not so much the child feels exposed. Some schools bring in outside speakers and involve the child in presentations; others keep things lower key. In either case, support from a small circle of friends, with a "study buddy" to pass on lesson notes, is helpful.
Some schools offer OCD children help with managing anxiety or using relaxation techniques, says Dr Burland. "You can train the child to do deep breathing going down the corridor to assembly; to say to themselves: 'I'm OK, I'll be alright, assembly doesn't bother me.' It's not a cure, it's just a way of making it less severe."
Educational psychologists should be able to help schools and children with programmes of anxiety reduction, says Dr Heyman. If a child is asking for teacher reassurance 15 times a lesson, it can be negotiated down to 10, then 5, then once at break. "The tip is to have a clear plan that everyone has signed up to. If it goes wrong don't give up. Review it and start again more slowly."
All this advice is fine in principle, but faced with making an instant response to a blinking, grimacing child, teachers may fear showing weakness in practice. "There are some children who will say: 'It's my Tourette's, Miss,' as they wallop another child over the head," agrees Dr Heyman. "It's very difficult for everybody."
The rule of thumb, she believes, is to think about what the child may be gaining by their tics or painful behaviours. If the answer is nothing, or a two-minute run outside the classroom to release tics, then they deserve understanding. "If you get the confidence of these children, they will reveal that they are embarrassed that they have to keep doing this."
Dr Chowdhury adds: "The outcome for these children seems to depend not on how severe their tics are, but on whether they feel accepted and understood. Most come to realise that tics are not a disease, they are just part of their personality, of themselves. They need a teacher who is an ally, who understands them."
BOOKS AND CD-ROMS
Tourette Syndrome: A Guide for Teachers by Amber Carroll. pound;4.00.
No Way! Which Way? Learning with Tourette syndrome. CD-Rom. pound;10. both from TS(UK)A.
Tics and Tourette Syndrome. by Uttom Chowdhury. published by Jessica Kingsley. pound;12.95.
OCD in School. CD-Rom. from OCD Action.
TS(UK)A: 0845 581252
OCD Action: 020 7226 4000