Managing Tourette Syndrome

Tourettes Action, the UK’s leading support and research charity for people with Tourette Syndrome explain more about this much misunderstood condition. 

Tourette Syndrome is an inherited neuro-developmental disorder affecting 1% of school children – the same statistic as Autism Spectrum Disorder (ASD). Like ASD, Tourette’s is also a spectrum disorder with some people having very mild symptoms whereas others have it more severely. Tourette’s does not affect intelligence or IQ and if managed correctly does not have to have an impairment on a child’s education.

Tourette’s is characterised by tics – chronic, involuntary sounds and movements. Tics can be simple such as blinking, shoulder shrugging and coughing or complex, purposeful actions such as jumping, bending and echolalia – echoing the sounds or words of others. Despite being sensationalised by the media, only 10% of sufferers swear, (coprolalia). For those who have mild symptoms, Tourette’s often goes undiagnosed, being attributed to nervous twitches or idiosyncrasies. 

Tips on managing Tourette Syndrome

Here are some useful tips on managing Tourette Syndrome:

• Develop clear and effective communication between the school and home, bearing in mind the symptom severity may vary in different environments. Teachers should be aware that children often suppress tics during school which may make concentrating on tasks difficult. When at home, children usually release the tics that have built up during the day, which can have an adverse effect on the completion of homework.
• Encourage teachers to contact Tourettes Action for help and guidance on classroom management techniques. One particularly useful tip is for children to have an agreed understanding with the teacher to leave the class if they feel the need to tic. Providing somewhere private to go such as the library or quiet room is a really useful practice to complement this.
• Learn as much as you can about the condition. Knowledge really is power – contact Tourettes Action for information and guidance. Tourette’s is biological and is not caused by bad parenting or abuse.
• Raise awareness amongst family, friends, teachers, work colleagues and other people you may come into contact with. Tourettes Action provide some really useful resources including leaflets, Tourette Syndrome ID cards and free presentations that can be downloaded from the website – www.tourettes-action.org.uk
• Know what to expect from your GP. If you suspect your child has Tourette’s, it is important that all options are discussed in order for appropriate health care to be provided. In many cases, a referral is necessary to a specialist.
• Be aware of other conditions associated with Tourette Syndrome. Over 85% of people with Tourette’s also have conditions such as Obsessive Compulsive Disorder (OCD) and Attention Deficit Hyperactivity Disorder (ADHD). These conditions can be just as difficult to deal with as the tics themselves and can have a severe impact on the child’s quality of life. Anger management is also an issue for some people with Tourette’s. Learn to recognise signs of anger and implement steps to avoid situations getting out of hand.
• Learn to differentiate between what is a tic and what isn’t. This can be difficult as tics are highly variable: they cyclically get better and worse over time and may change from one tic to another. They are exacerbated by periods of stress or worry and can be suppressed for short periods of time but eventually have to be ‘released’. Vocal tics may be noticeable due to a slight tonal change in the voice although this is not always apparent.

Tics are involuntary and therefore cannot be stopped by restraining a child or punishment. However, children with Tourette’s are no different to any other children! It’s really important to recognise when they are misbehaving and have the confidence to intervene. As with any other child, children with Tourette Syndrome appreciate consistency and a stable environment. Knowing more about Tourette’s will help everyone to cope with the condition and achieve the most out of life. For more information contact the Tourettes Action helpline: 0300 777 8427 or email help@tourettes-action.org.uk

Tourettes Action is the UK’s leading support and research charity for all those affected by Tourette Syndrome. Their aims are to:

• Promote the needs of those suffering from Tourette Syndrome to the wider community including schools and the health service
• Provide workshops and activities to bring together individuals with Tourette’s
• Produce materials to improve the knowledge and understanding of Tourette Syndrome
• Provide a telephone helpline
• Organising conferences, meetings and seminars
• Encourage, assist and where possible fund research into all aspects of Tourette Syndrome
• Liaise with medical specialists and offer advice to Tourette sufferers
• Offer grants to individuals to purchase equipment or other items to ameliorate the effects of Tourette Syndrome
• Conduct research into Tourette Syndrome:

Tourettes Action recently received a research grant from the BIG Lottery Fund to investigate the psychosocial experiences of adolescents with Tourette Syndrome. Together with a research team at the University of Nottingham, they aim to identify the key psychosocial issues impacting on young people with Tourette’s, identify the factors affecting the quality of school education and improve the understanding of factors that influence tics. We are currently recruiting volunteers to take part in this part of the study. If you are interested or know someone who might be, please contact Andrew Clempson, andrew.clempson@tourettes-action.org.uk.

For more information visit www.tourettes-action.org.uk or call us on

0300 777 8427.

Tourettes Action hold adventure camps for young people with Tourette Syndrome. Campers learn to work as a team - supporting each other and challenging themselves.