How to improve the everyday experiences of adolescents with Tourette’s syndrome
Tourette’s syndrome (TS) is an inherited neurodevelopmental disorder affecting approximately one per cent of school children and more than 300,000 children and adults in the UK. Many people with TS have mild symptoms that often go undiagnosed, but for some the condition is very severe, significantly affecting a child’s quality of life and educational experience.
The characteristics of TS are tics – defined as sudden, rapid and uncontrollable sounds and movements appearing in bouts that cyclically “wax and wane” over time. Tics are highly variable both in frequency and intensity and can change without specific cause or reason. Some tics involve simple actions such as blinking, coughing or head jerking. Other tics are more complex and involve purposeful actions such as jumping, twirling and echolalia (repeating sounds or words just heard). Some tics are also auto-suggestible and are influenced by environmental triggers such as people, objects or phrases. These tics can be difficult to manage, especially when they involve words or phrases that seemingly relate to others. Despite this, it is important to understand that tics are involuntary and are not a reflection of the true feelings of the sufferer. One tic that is often associated with TS is coprolalia (involuntary swearing), which affects only ten per cent of people with TS.
Tics can be suppressed for short periods of time but eventually have to be “let out” and often with greater vigour than would be the case without suppression. They are exacerbated by periods of stress or worry and can also be severely disabling, causing long term physical damage due to the repetitive stresses to joints and tissues. Tics are relatively common in school children and are not usually a cause for concern as they often disappear of their own accord, but in TS, both movement and vocal tics persist for longer than a year.
The onset of TS is usually around the age of seven. The first tics often start at the head and face, whereas vocal tics tend to appear later, at around the age of eleven. Tics are often reported to be most severe at around the age of ten to twelve, which may be associated with the stress and anxiety of moving to secondary school. Tics often wane towards the end of adolescence and for half of people with TS, tics are almost completely gone by the age of eighteen. For the other half, the tics continue into adulthood.
Approximately 85 per cent of people with TS also have other conditions, such as obsessive compulsive disorder and attention deficit hyperactivity disorder. These conditions, together with TS often require special educational assistance and, therefore, the prevalence of TS in SEN groups is higher than in mainstream schools.
Tourette’s syndrome at school
A number of research studies have investigated the social and psychological issues affecting individuals with TS. Evidence suggests that school children with TS are judged less positively than their classmates both in terms of popularity and likeability. In addition, parents report that their children with TS can have social difficulties such as making friends and being bullied. Quality of life ratings obtained from individuals also suggest that TS can have an adverse effect on wellbeing and self-esteem. Despite these findings, very little research has looked at these social and personal issues from the point of view of the young people themselves.
Tourettes Action, in association with the University of Nottingham, is now engaged in a new study which aims to address this problem by interviewing adolescents with TS directly. It aims to develop new and improved knowledge of the key psychosocial issues impacting on young people with TS and identify the factors significantly associated with quality of school education. It also seeks to improve our understanding of the situational factors or events that influence tics.
The initial results from this study seem to suggest that adolescents with TS are primarily concerned about how other people respond to their tic behaviour, particularly but not exclusively in school. Of great importance are the support and acceptance that young people with TS receive from their friends. Despite this, frustration is frequently reported when around people who do not understand the condition. This sometimes leads to them avoiding certain social situations. These findings, although not new, are the first to describe the feelings of adolescents with TS from their own point of view. As one respondent commented, “I don’t think there’s been a day where I haven’t been thinking about it – if that day does come, that would be great, but it’s always there, everywhere I go”.
Previous studies have found that stress or anxiety, working under pressure, fatigue and boredom are commonly associated with tic exacerbation. Other events or activities such as relaxation, interactions with familiar people, habitual actions, physical exercise or activities demanding concentration (such as playing an instrument) can help reduce the frequency of tics. The initial findings from this study are in agreement with the above; however, of particular interest is that a relaxed school environment is reported to lessen tic severity, which may consequently improve the school performance of adolescents with TS.
Despite these findings, TS remains a difficult condition to understand as tics are not always apparent. For example, children with TS can be relatively tic-free in the classroom because they suppress their tics. However, once alone or at home, they tic excessively to “release” them. Suppressing tics requires a substantial amount of concentration and effort which can significantly impair the child’s ability to follow lessons. This may lead to poor overall educational attainment. Therefore, an improved understanding of activities that affect tic regulation and better classroom management and educational aids can significantly enhance the performance of adolescents with TS in school.
What can teachers do to help?
Little research has been conducted to determine the modifiable factors that can influence the educational experience of a child with TS. However, the initial findings from this study suggest that increased understanding of the condition and simple changes in classroom management can make a big difference. Other factors that may be considered include:
- avoiding responding to tics to encourage normalisation
- understanding that tics cannot be controlled by restraining, instructions to stop or promising rewards
- avoiding seating arrangements that are likely to cause problems (seating towards the front of the classroom can aid concentration and reduce the frequency of tics)
- using classroom aides, such as dictaphones, computers for reading and writing problems, grid paper, calculators and organisers
- providing permission to leave the classroom when tics become overwhelming and implementing a private area where the child is comfortable to tic freely
- using worksheets that require the minimum of handwriting.
The list above is by no means exhaustive and the next part of this study will identify the factors significantly associated with the quality of school education. This will provide a much more detailed picture of the experiences of young people with TS and how classroom management can be changed to improve the education experience of adolescents with TS.
Andrew Clempson is the Research Manager at Tourettes Action: