tourette syndrome
by Hugh Rickards
Tourette Syndrome (TS) is a medical condition affecting around one in a hundred children. The main symptoms are motor and vocal tics. Tics are jerky movements or sudden noises that a person makes unintentionally. Most people who have tics describe a build up of tension before the tic (like an itch in your nose before you sneeze), which makes the tic difficult to resist. Usually, straight after the movement or noise, the person would feel better for a short time and then often the tension would build up again. This means that people with TS often feel tense or restless, especially if they are trying not to tic.
diagnosis and outlook
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In order to be diagnosed with TS, you need to have had multiple motor tics and at least one vocal tic for at least a year. This is because transient tics – a brief period or one-off episode of tics – are really common in children (occurring in around ten per cent) and these people get better.
TS usually starts between the ages of 6 and 9, gets to its peak in the mid-teens and tends to improve into adulthood. Almost all people with TS get some improvement with time.
One common misperception is that all people with TS swear uncontrollably. This is not the case. A minority of people with TS (fewer than ten per cent) have swearing tics (or coprolalia). Swearing tics are very different from normal swearing in that they tend to happen out of context with what the person is saying or feeling. The person often feels embarrassed with what they are doing and tries to cover up (sometimes by coughing or disguising the word or gesture with a more acceptable one).
People with TS can also have echolalia, which the involuntary echoing of verbal utterances made by another person or sound in the environment. This symptom is also seen in other conditions such as autism or after some types of brain injury.
other related conditions
It is quite common for people with TS to have other conditions too. The commonest condition that accompanies TS is obsessive-compulsive disorder (OCD). People with this condition feel compelled to do complex behaviours such as cleaning or dressing rituals. Often these behaviours are accompanied by thoughts such as "if I don't do this, something bad will happen". The person then behaves in a certain way to avoid harm, even though they realise it isn't rational. These behaviours are called compulsions. Some people have said that superstitious behaviours are a mild and common form of OCD.
Obsessions are repetitive and intrusive thoughts that a person tries unsuccessfully to resist. This might include unwanted sexual or violent thoughts or images, which are distressing to the person having them. Obsessions can cause a great deal of distress and disability to people and can be difficult or embarrassing to talk about. There's more information about this in our feature on OCD.
You can see from the description of tics and OCD that they are quite similar in many ways. They are both things that a person feels compelled to do, tries to resist and finally ends up doing, leading to a short lived feeling of relief.
Another condition that some people have linked to TS is Attention Deficit Hyperactivity Disorder (or ADHD). This condition always starts in childhood, usually before anyone has seen signs of TS. The usual symptoms are overactivity, impulsivity and poor concentration or organisation. Children who have ADHD can often have problems in school and usually need extra help to focus in a classroom situation. In general, children with ADHD grow out of these symptoms as they get older, but it is increasingly recognised that people can take these problems into adulthood too. Trying to work out whether or not someone has ADHD is often difficult as poor concentration is a symptom of many medical problems (both physical and mental). For more information, have a look at our feature on ADHD.
treating TS and related conditions
Happily there are a number of good treatments for TS and related problems. The most important first step is to get the diagnosis right. There are a number of neurological problems that can look like TS but are in fact something else. This means that a person who thinks they may have TS needs some kind of assessment by an experienced clinician. Sometimes blood tests or scans can help to clarify the diagnosis.
There are a number of drug treatments that can help tics, OCD and ADHD. Drugs that damp down tics are also used in the treatment of schizophrenia but people with tics are usually prescribed much lower doses. On the whole, the drugs are pretty effective at reducing tics but side effects, such as tiredness or stiffness, can cause problems.
There are good drug treatments for OCD, including a family of drugs called SSRIs (this includes drugs like Prozac and Seroxat). These drugs often reduce OCD symptoms but again can have side effects like nausea and changes in sexual function (such as delayed orgasm or ejaculation). It is often a question of finding out if there is a dose of medication where the good effects outweigh the bad ones. OCD can also be treated with psychological therapies such as Cognitive Behaviour Therapy (CBT).
ADHD is treated with stimulant medications such as Ritalin (methylphenidate). Some people have said that this can make tics worse but the most recent evidence suggests that it doesn't. People with ADHD also can respond to a mixture of a structured environment when tasks need completing and the opportunity for "free play" to let off steam.
living with TS
Children with TS can often feel different or get excluded socially as a result of TS. This can have a negative effect on the child's self-image, especially during adolescence. This requires a sensitive approach from health professionals. The most important part of the treatment is to try and help the person with TS, together with their families and teachers, to accept and to work with the diagnosis. One example of this is helping teachers to understand that swearing in class may not be a naughty behaviour and different strategies need to be used to deal with it.
So what should you do if you, or your child, have been diagnosed with TS? First, learn as much about TS as you can. Have a look at some of the websites and online resources at the end of this article. There's enough good information online that you can learn a lot about TS without leaving the house. Once you've covered most of the good websites, take a look at some of the books that have been published about TS. Talk to people who have TS. Find out about local support groups and get in touch with them. Take a look at help and info below for a list of relevant organisations, online support groups, websites and books.
Dr Hugh Rickards is a Consultant in Neuropsychiatry at the Queen Elizabeth Psychiatric Hospital in Birmingham
help and info
Channel 4 is not responsible for the content of third party sites.
organisations
Tourette Syndrome (UK) Association
Southbank House
Black Prince Road
London SE1 7SJ
Helpline: 0845 458 1252 (Mon-Fri 9am-1pm)
Tel: 020 7793 2357 (admin)
E-mail: help@tsa.org.uk
Website: www.tsa.org.uk
Formed in 1981, the Tourette Syndrome (UK) Association is a registered charity offering support and guidance for affected individuals and their families. It promotes research and maintains a register of physicians familiar with the condition.
Tourette Scotland
Algo Business Centre
Glenearn Road
Perth PH2 0NJ
Tel: 01738 450411
E-mail: info@tourettescotland.org
Website: www.tourettescotland.org
Tourette Scotland provides advice and support for children and adults with Tourette Syndrome and associated disorders such as ADHD, obsessive compulsive disorder and Aspergers.
websites
Diagnosis and Treatment of Tourette's Syndrome
www.mentalhealth.com/book/p40-gtor.html
Online booklet intended to provide information to physicians, psychologists, nurses and other professionals who wish to become more knowledgeable about TS.
Online Support Centre
http://members.tripod.com/~tourette_syndrome
Provides information, support, advice and resources for people with TS, their families and loved ones, counsellors, teachers and medical professionals.
Samuel's World
www.samuelsworld.co.uk
A new, friendly website about how one family is coping with a son who has Tourette's Syndrome and offers the chance for others to share their thoughts and ideas.
Tourette Syndrome Community
www.tourette-syndrome.com
An online community and information portal for children and adults with TS with a wide range of information, from life stories to medication advice. Also has a pen pal section, a messages area and even some poems.
Tourette Syndrome Information
www.tourette-syndrome.net
American site dedicated to TS, discussing the condition, medication and how to support people with TS and their friends and family. There is also an extensive links section leading to more information.
Tourette Syndrome Plus
www.tourettesyndrome.net
Informative site offering advice for people with TS and their family and friends, including a large amount of useful educational information about the condition.
You've got Tourette Syndrome – So Now What?
www.tourettenowwhat.tripod.com
Friendly site with stories from people with the condition and their families. It includes a wide range of information and many further links.
reading
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A Mind of Its Own by Ruth Brunn and Bertel Bruun (Oxford University Press, 1995) |
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Children with Tourette Syndrome: A Parents' Guide by Tracy Haerle (Woodbine House, 1992) |
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Living with Tourette Syndrome by Elaine Fantle Shimberg (Simon & Schuster, 1995) |
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Tourette Syndrome: A Practical Guide for Teachers, Parents and Carers by Amber Caroll and Mary Robertson (David Fulton Publishers, 2000) |
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Tourette Syndrome: The Facts by Mary Robertson and Simon Baron-Cohen (Oxford University Press, 1998) |
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(July 2003, resources updated December 2004)
