A lack of understanding about Tourette syndrome is often the biggest problem facing children with the disorder, writes MICHELLE McDONAGH
‘I WAS in assembly and one of the teachers told me to stop flicking my shoe. When I looked at him, my eyes rolled up in a tic and he kept me in at break for being rude. I was too embarrassed to tell him it was a tic.”
For children with the neurological disorder Tourette syndrome, incidents such as this are sadly all too common and the biggest problem for these kids, according to Dr Tara Murphy, clinical psychologist at Great Ormond Street Hospital in London, is the general lack of understanding about their condition.
Take a situation where a 14-year-old boy is swearing uncontrollably on the school bus and the driver puts him off the bus. The child is too embarrassed to explain to the driver in front of a bus full of his peers that he is one of the 10-15 per cent of people with Tourette’s who has coprolalia which means he is completely unable to stop himself from using obscene or inappropriate words.
A child who is constantly sniffing, coughing, grunting, blinking or shoulder shrugging in class can get on the nerves of teachers and classmates alike – but these involuntary movements and sounds are common tics in children with Tourette’s and not attention-seeking behaviours.
Murphy says: “Children with Tourette syndrome should be no different than other children and should be expected to do just as well. They are as bright and capable as other kids and if people had a better understanding of the disorder, they could do better.
“It’s so important for the people involved in the child’s life – parents, teachers, family members and the wider community – to learn as much as they can about Tourette’s.”
Tourette syndrome affects 1 per cent of schoolchildren. However, according to Tourette’s Action UK, most of those who have TS are undiagnosed and unaware of the condition.
Boys are three times more likely than girls to have TS. Symptoms typically start in childhood between the ages of five to seven, but TS is usually undiagnosed until nine or 10.
The actual cause of TS is unknown and the disorder does not in itself affect IQ. The course, duration and severity of the disorder can vary from individual to individual.
Tourette’s is characterised by tics which vary in number, frequency, complexity and severity. Tics can increase under stress and anxiety or excitement and they often decrease with relaxation or concentration.
Dr Murphy will be running workshops at the upcoming Tourette Support Ireland (TSI) annual meeting in Dublin to teach children how to use behavioural therapies to develop strategies to manage and cope with their tics in everyday life.
She will also be showing them how to use these therapies to manage the anger and frustration that can be a huge issue for children with TS.
“Families often talk about the TS child’s short fuse and temper tantrums that you might expect to see in younger children,” she says.
“ If a child is in school all day long trying to suppress tics, they will be exhausted by the time they get home in the evening, and this is why parents tend to experience their anger a lot more than teachers.”
Chairwoman of Tourette Support Ireland, Carol Pitcher, highlights the importance of teachers in the development of a student with TS.
The mother of a 23-year-old son with TS, Pitcher is tireless in her mission to improve the lives of children and adults with TS in Ireland.
“Teachers and the wider community need to get that people with TS need not to be pitied, they need to be understood,” she says.
“School is a huge issue. You get some teachers who have great empathy and some who don’t want to know about it. We really need to educate the educators.
“My son was fine in national school where we were dealing with only one teacher, but I always say a child with TS will not survive secondary school without the teachers firstly knowing about his disorder and then understanding it.”
As part of the Young Social Innovators programme, transition year students at Loreto College in Clonmel are developing an awareness and education programme on Tourette’s which will be rolled out to all Loreto colleges in the country.
Pitcher is hoping to adapt this programme and possibly extend it to all schools around the country to increase awareness of the disorder in the education setting.
Why not bring this kind of programme into the SPHE curriculum to educate teachers, parents and students about TS and other disorders? she asks.
“There are lots of accommodations that could be made in schools to make life a lot easier for children with Tourette’s,” she explains.
“For example, a child might be allowed to sit to the side or at the back of the class where nobody can see their tics or they might be allowed a break to walk up and down the corridor or go somewhere they can tic in private to reduce the dreadful stress of trying to hide their tics in class.”
As Pitcher points out, there is plenty of good advice and tips available for teachers on the TSI website (tsireland.ie) and also on the excellent Tourette’s Action UK website (tourettes-action.org.uk).
She is also planning to develop an ID kit containing a photograph and information about TS, so that a child who is swearing on a bus, for example, does not have to try to explain his condition to the driver, but can simply hand him the card.
“Tim Howard, the goalkeeper, is a great role model for young people with Tourette’s. He is getting on with his life, just like my son Simon, who is going to college and doing normal things like other people his age. He has had difficulties, but who doesn’t in life?” Pitcher asks.
The primary focus of this year’s TS Ireland annual meeting will be the children. As well as the behavioural therapy workshops, there will be a music workshop.
Developing a regional adult support network within TSI is another important goal of the meeting.
Pitcher is calling on the new Government to reassure parents of children with Tourette’s that there is at least a commitment to develop a policy on the condition that will “help to relieve TS sufferers and their families of a lonely burden that they have carried for too long”.
The Tourette Support Ireland annual meeting takes place on Saturday, February 19th, at the Ashling Hotel, Dublin. See ttsireland.ie for a registration form which is required to secure a place as space is limited. All inquiries to support@tsireland.ie or to the TSI help- line on 087-2982356
TOURETTE SYNDROME: KEY FACTS FOR TEACHERS
EXAMPLES OF TICS
Motor: Eye blinking (excessively or in an unusual pattern), touching, biting, hitting, echopraxia (imitating others' actions), self-injurious behaviours (picking scabs, hitting oneself, biting oneself, picking out eyelashes), smelling things. Occasionally inappropriate sexual touching of self or others.
Vocal: Coughing, grunting, sniffing, throat-clearing, shrieking, whistling, spitting, animal sounds, echolalia (repeating other people's words/phrases), repeating words/phrases out of context, coprolalia (using obscene/ inappropriate words).
TS STRATEGIES FOR TEACHERS
Implement whole school and peer awareness training. Tourette's Action UK can provide PowerPoint presentations.
Tics cannot be controlled by restraining, instructing to stop or promising rewards which may make them worse.
Avoid responding to tics. This encourages increased normalisation.
If children are not using their energy to suppress tics, they may be more focused. The suppression of tics increases anxiety and sub-optimal educational performance.
Provide access to a private space for tension and tic release or times when tics are "allowed".
Avoid seating arrangements which are prone to disruption, such as by a window, or where tics will cause greatest problems, such as in the middle of a row.
Seating children with Tourette's at the front of the classroom can enhance attention.
Offer short breaks.
Modify or simplify task requirements because some things take a lot longer for children with TS – extend time on reading and handwritten work where necessary.
Do not discriminate work on the basis of handwriting – tics may make writing difficult.
Ask parents if their child is on medication as this may cause side effects, such as sleepiness.
Allow longer time to complete timed tests and exams.
Provide a private area in stressful situations such as examinations.
Pair students with supportive and understanding "buddies".
Have effective and clear communication between school and home because symptom severity may vary in different environments.
Eliminate unnecessary materials from desks to avoid distractions, but permit students to "fiddle" with specified objects.
Aids such as scribes, rulers, laptops, visual timers, grid paper, calculators, organisers and visual diaries can be very helpful.
Set up "work contracts" between teachers and student. These can outline particular expectations and provide clearer goals.
For more information and advice, log on to tourettes-action.org.uk
