Pupils with Tourette’s just need the right support, not fear and misunderstanding.
When a teacher first hears that they are about to have a child with Tourette’s syndrome (TS) in their classroom they often feel anxious. What will the child be like? How will they affect the dynamic of classroom and will they have an impact on the other children?
TS can be poorly understood by teachers and fellow pupils but, with the right support, children with TS can generally function as successful and happy members of the school community.
What is Tourette’s syndrome?
TS is a neurological condition which has a genetic basis and therefore has a hereditary element. It does not of itself reduce learning capacity or intellect.
One in 100 children have TS. This statistic holds good all round the world, apart from in sub-Saharan Africa were it is about half this number. Unfortunately, nobody knows why this reduction occurs. What it does show, however, is that TS is more common than you think and that most teachers will have taught a child with TS but will not have been aware of it. This is because for many children it is quite mild and they can cope without any intervention either from the medical profession or the teaching profession.
For a person to be diagnosed with TS, he or she must:
- have two or more motor tics (for example, blinking or shrugging the shoulders) and at least one vocal tic (for example, humming, clearing the throat, or yelling out a word or phrase), although they might not always happen at the same time
- have had tics for at least a year; the tics can occur many times a day (usually in bouts) nearly every day, or off and on; there should be a tic free period of no more than three months within the year
- have tics that begin before they are 18 years of age; after this it is called Tic disorder, although the effects are identical.
There is no medication specifically for TS and those that exist often have unpleasant side effects. Especially with young children, the balance between controlling the tics and causing other problems must be finely balanced.
Only 12 per cent of children with TS have pure Tourette’s (that is, just the tics). The other 88 per cent will have a number of co-morbidities such as ADHD, OCD or ASD.
Talk to the child
One of the key things for the successful integration of a child with TS at school is to talk to the child and the parents about how their TS affects them, what makes life harder and what makes it easier. One of the main things which makes a difference is for the class to be told about TS. It really helps if the young person can be part of this and talk about how it affects them. It could, though, be part of a wider programme about understanding difference, or maybe even a research project for groups to look at several neurological conditions or the different conditions children in the class have, such as epilepsy or diabetes. Many schools have peer support programmes or “friendship benches” which can help a child feel secure that there is someone who is there for them if they are having a bad day.
What aggravates tics?
Tics and other linked behaviour can be made worse if the child is anxious, for example if they have limited time to complete tasks, or if they feel they have to be quiet or discreet. Looking forward to birthdays, an outing or other much anticipated events can also provoke tics, as can tiredness, which is why sleep is so important. As with many other conditions, the changes around puberty also usually make tics worse.
In the classroom
Only around ten per cent of people with TS have the swearing tic coprolalia, so it is unlikely, although of course not impossible, that your young person will swear.
What is often more of a problem in school is the phenomena known as “non-obscene, socially inappropriate behaviour” (NOSI). This means that if you are bald, short, over-weight or have a lot of make up on, a TS child with this type of behaviour will often comment. It is hard to believe that, despite their comments, this is not what they are thinking. It’s even harder to believe that they are as surprised and upset as you when those words leave their mouths, but that is the case. So, unlike with a toddler – when you can explain that their comments are not nice, will upset the person concerned and help them to learn not to do it – the tactic for a child with TS is to explain what’s going on to the staff and children they interact with.
The one thing you really shouldn’t do with a child with TS is ask them not to tic. It immediately becomes the only thing their brain wants to do. It is much better to sit with them and ask what their tic feels like before and during the tic. Is there anything that you could alter to make them tic less often? Some children can suppress their tics for a short while, but it requires a huge amount of concentration which means they won’t be engaged with the lesson. Younger children, though, will probably not be able to suppress tics at all.
Because tics wax and wane and can be suggestible, people believe either that the student can control their tics or that they are using them as an excuse for negative behaviour. Of course, very occasionally this may be the case but usually it is just the normal course of TS.
Depending on how the tics manifest themselves, a seating plan can be really helpful. If you have a motor tic, sitting at the end of a row can help; some children prefer to sit at the back so no-one can watch them, while others prefer to sit at the front. Again, talking to the child and the parents can be key to understanding how to support your student.
Especially in high school, it is more difficult for teachers to have a close relationship with every child and many supply teachers may be wary of a child saying they have TS. Schools can use a “passport” which includes the child’s picture and a brief description of what helps them, and what doesn’t, signed by a member of the school’s senior staff. Time out cards can be useful but they should have boundaries; this is even more important for younger children. There needs to be designated place for pupils to go to release their tics, along with some suggestion as to how long you expect them to be gone for. For younger children, it is useful to say “I will check on in you in five minutes and see if you are OK”, and perhaps extend the number of visits depending on how the child is coping. It is better, though, if their tics can be accommodated in the classroom. Once other children understand what is going on and are not startled by their tics, the pupil with TS usually works well in the classroom, as they might do with general background noise.
For a teacher of a child with TS, it is important to trust yourself. Try to remove the words “Tourette’s syndrome” from your interpretation of the situation and think about the actual tics and behaviours that you have before you. Realise that anxiety is anxiety and ADHD is still ADHD; then you will know that you have the skills to help the child with TS to grow and learn in your class.
Suzanne Dobson is Chief Executive of the charity Tourettes Action: