Published Monday, 8th May 2017
Tourretes action, a UK support and research charity for people with Tourette’s syndrome and their families
Suzanne Dobson explores the relationships between Tourette’s and common SEN conditions
With a prevalence of one in 100 school age children having Tourette’s syndrome (TS), it is really surprising that most teachers I speak to tell me they have never taught a child with TS. Teachers with 20 or more years of experience must have taught thousands of children, so what is happening?
TS is a genetic, inherited neurological condition caused by chemical imbalances in the brain. There are none of the typical diagnostic tests and the diagnosis is given after observing the young person and taking a complete family history and understanding of the tics which the child is displaying.
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 he or she is 18 years of age
- have symptoms that are not due to taking medicine or other drugs or due to having another medical condition (for example, seizures, Huntington’s disease, or postviral encephalitis).
There is also no medication specifically for TS and those that exist often have unpleasant side effects and especially with young children; the balance between controlling the tics and causing other problems must be finely weighed. The most useful treatments are the talking therapies similar to cognitive behavioural therapy. The young person is taught to identify a tic beginning to form and then train themselves to do something else or suppress the tics for an increasing length of time.
Only ten per cent or so of those with TS have Coprolalia, the much publicised swearing tic; it is strange that a condition can be defined by a symptom which so few people have. The other symptom is non-obscene, socially inappropriate words or gestures (NOSI). This is often the biggest area of conflict in the classroom and can include comments about people’s physical features or behaviours. The second biggest potential area of conflict is echolalia – the repeating of words and phrases which are often their own but may also be other people. This can be a particular source of aggravation to those in authority, such as policemen and teachers.
A spectrum condition
It is only recently that people are beginning to think of TS as spectrum disorder and this may be at the bottom of the discrepancy between prevalence and classroom manifestation. I suspect that a large proportion of children with TS will have tics so mild as to be of no significance to them or others. We all know children (and adults) who have a range of what we think of as mannerisms and the suspicion is that officially these could be diagnosed as Tourette syndrome. Therefore, it is only children with more pronounced TS, usually with a selection of comorbidities that will be visible in the classroom and therefore need more support.
The problem with this lack of recognition is not about the tics themselves but is about the other invisible issues which Tourettes brings. I usually describe TS as being like an iceberg; there is only a small amount to be seen above the surface (the visible tics) but the huge lump of “ice” below the water will sink ships and scupper education. In this analogy, the internal tics tell the child not to try, as they won’t succeed, and the feelings of anger or anxiety bubble unbidden to the surface. For some, this anxiety will manifest itself as an overwhelming feeling of rage. In order to begin to support a child with TS you need to get to know them – to know when to challenge them, when to just understand them and when to push them just a little to overcome the barrier that is TS and start to achieve their potential.
TS is first diagnosed in childhood between five to seven years of age and often worsens between the age of 11 and 12, which is a very difficult time often just when children are moving to high school and, of course, when they are most affected by the emotional and physical changes which surround puberty. For 50 per cent of young people with TS, their tics will abate as they move towards their late teens and early adulthood. This means, though, that they may have struggled throughout their whole education, left school with fewer qualifications than they should have, and are then faced with having to try to catch up later in life. Teachers will always play a pivotal role in shaping a child’s future and by recognising the needs of a child with TS, they can have an even more profound impact.
Only 12 to 15 per cent of people who have TS have “pure” TS – that is, just the tics (although obviously there will also be anxieties associated with the tics). The remaining 85 to 88 per cent have at least one comorbidity, the common ones being ADHD, autism, OCD and anxiety.
ADHD (attention deficit hyperactivity disorder) is the most commonly co-occurring condition with Tourette syndrome. ADHD is defined as a group of behavioural symptoms that includes inattentiveness, hyperactivity and impulsiveness, which interferes with functioning or development. Often, children with TS have an increased level of impulsivity driven by the nature of TS. It is also often hard to distinguish between some of the traits of TS and autism.
OCD (obsessive compulsive disorder) is an anxiety-related condition where a person experiences frequent obsessional thoughts and/or compulsions that cause serious distress. In common with the feeling often associated with OCD, many people with TS describe a measure of satisfaction on having completed their tic. In addition, they sometimes say that if they don’t complete their tic satisfactorily the first time, they need to perform the tic over and over again until it “feels right”. As with OCD, the perceived consequence of not completing a tic or task is that someone close will suffer a misfortune, adding to the burden of “doing it right” the first time.
Anxiety is an emotion which gives the person an unpleasant feeling of tension and apprehension. Anxiety is a typical and common emotion experienced by children and adults. It often arises in response to a perceived threat or is triggered by a specific stressful event. When anxiety is persistent and interferes with normal routines, and doesn't go away with reassurance and comfort, it is classified as an anxiety disorder.
Unsurprisingly, TS is a great source of anxiety and often causes the child to be anxious about other things, often making them unwilling to try new work because they know they are not going to do it well, even though there is no evidence for this belief. It also means that any change is likely to increase anxiety. So, for example, changing class or teachers is likely to be a great source of anxiety that can cause an increase in the number and frequency of tics. This, in turn, may well heighten anxiety and thereby a vicious circle is created. Given that the transition to high school is likely to be a key source of anxiety, additional visits to the new school, extra support and the provision of information about the new environment can help to lessen the stress pupils feel.
Anger control issues affect a significant number of people with TS and often they cannot tell you what they are angry about. These extreme reactions to events can make relationships difficult. Problems with anger control may turn into aggression towards parents or teachers. It is a good idea to seek additional advice from your local child and adolescent mental health service (CAMHS) or an education psychologist if you are trying to help pupils with TS to manage any anger issues.
Depression: many people feel sad or depressed if they are experiencing something upsetting or stressful. Usually, these feelings are short lived, but if the feeling of sadness continues, and it starts to interfere with daily life, this could be a sign of clinical depression.
Some studies have shown an increased rate of depression in adults with TS; however, it is not clear whether the depression is as a result of the tic disorder or a response to the difficulties experienced by those living with the condition.
Helping pupils with Tourette’s
Tourette’s syndrome, with all its complexities, can be very difficult to live with both for the person with the condition and for those seeking to support them.
Tics can also be auto-suggestible. They can be triggered by talking about them, or by someone copying a tic or similar action, but they usually calm down quite quickly. In the classroom, it is usually a lot easier for the person with TS if their classmates understand what TS is and how it affects them. It can be a good idea for the young person to talk to the class, with the support of their teacher or parents, about their experience of the condition. This makes it easier to manage other children’s reactions and make life a little more relaxed for the pupil with TS. If everybody involved understands what can cause tics, this can help to prevent other children from consciously triggering tics, for example, when they are bored or when the lesson might be a little slow.
While I have tried to discuss some of the issues commonly faced by those with TS, one of the most difficult things for teaching staff is that everyone’s TS is different. Indeed, the differences can be very pronounced, from the child with a few simple tics (such as sniffing, blinking, shrugging and perhaps a simple word), to a child with the most complex tics (including jumping, spinning, making complex noises or sounds and even uttering complete sentences). Similarly, a child may have TS on its own, while another pupil may have a complex diagnosis involving TS and a number of other conditions. The best approach to helping the child to manage their TS will always be to take an individualised approach. Most clinicians are willing to talk to a school if you have a particular problem. Involving parents is also crucial here. By working together, schools and families can find the right approach and offer the most appropriate support for the child concerned to help them overcome the issues they are facing.
It’s important to remember, though, that if one per cent of school children have the condition, there are probably a number of children in your school who you are not aware have TS. Their tics might not be visible but perhaps the comorbidities are and if nothing else seems to quite fit the bill, it might be worth considering TS.
Suzanne Dobson is Chief Executive of Tourretes Action, a UK support and research charity for people with Tourette’s syndrome and their families: