Tourette’s Syndrome
Tourette’s Syndrome is a hereditary, neurological disorder characterised by motor (body) or vocal tics, generally starting in primary school but which really become apparent between the ages of 10 and 14. The tics are involuntary and their severity will come and go from one day to the next. Many people with TS do have some control over their tics, but the tics may well reappear with renewed vigour once the control is relinquished. Things often improve as the young person reaches adolescence. The tics can be very distressing for the young person, causing embarrassment and possible teasing from friends and even family. It is three times more common in boys than in girls.All children with Tourette’s Syndrome will have tics of some sort. They are very difficult to control, and the process of trying to keep them to a minimum can be the cause of constant stress and anxiety. Try to keep this uppermost in your mind when dealing with TS!
Over the past year, this disorder has gained much wider recognition following a couple of excellent television programmes, and several well-known people have described how TS has affected them in their school, social and working lives.
The most common motor tics may include:
The most common vocal tics may include:
Associated Symptoms:
As many as three-quarters of children will also have attention difficulties (AD/HD) and many will be dyslexic and/or dyspraxic; at least half may suffer from obsessive compulsive disorder (OCD) and suffer anxieties including phobias. Other symptoms can include moodiness, compulsions, obsessions and impulsions, echolalia / palallia (repeating of phrases / words or syllables), coprolalia / copropraxia (swearing / gesturing obscenities), stuttering, apraxia (non-neurological inability to carry out an action, such as reading).
Problems:
The young person with TS may be quick to lose his temper, may over-react in certain situations, will have difficulties with impulsivity, and may display defiant behaviour to those in authority. At school they may have problems organising their work, playing / working quietly, speaking at the appropriate time (they may interrupt others, or encroach on their space, work area etc). They may appear not to listen to the teacher; they may lose vital papers, books, other items necessary for school or home activities. They may take part in physically hazardous activities without having thought through likely outcomes.
Treatment:
Certain drugs such as clonidine or haliperidol can subdue TS and its associated tics. Your doctor will advise you. Any medication given needs to be closely monitored so that it can be adjusted according to the progress of the disorder. Drugs often have some side effects in some patients e.g. depression.
Helpful hints for home and school:
Other Useful Contacts:
The Tourette Syndrome (UK) Association
Helpline: 0845 458 1252 (if you want to speak to an advisor)
Admin: 01383 629600
PO Box 26149, DUNFERMLINE, West Fife KY12 7YU
Website: www.tsa.org.uk
Email: enquiries@tsa.org.uk
This organisation has helpful leaflets and a reading list. There is also a ‘Doctor On-line’ section of their website where you can contact a doctor with any questions you may have.
Reading: see also OAASIS information sheet ‘Books – where to find them’
OAASIS publishes A First Guide to Tourette's Syndrome in its First Guide series £4.00 plus p&p. You can ring or write to OAASIS at the address over the page for a publications list / order form or visit the website. The OAASIS website is at www.oaasis.co.uk.
OAASIS also produces a range of free Information Sheets: please contact OAASIS for the full list or view them on the website.
David Fulton Publishers–Tel: 0208 996 3610
Website: www.fultonpublishers.co.uk
Email: mail@fultonpublishers.co.uk
Order via Bookplace Ltd
Tel: 08000 921 554
Email: customerservice@bookplace-ltd.co.uk Jessica Kingsley Publishers
Website: www.jkp.com
Email: post@jkp.com
Tel: 0207 833 2307.
Lucky Duck Publishing Ltd
Website: www.luckyduck.co.uk
Email: publishing@luckyduck.co.uk
Tel: 0117 947 5150 Fax 0117 947 5152
Try also the internet book shop www.amazon.co.uk which has many titles
Internet sites:
The TSA(UK) site is at
www.tsa.org.uk/ where you can order its information packs.
Two US based sites: The Mental Health pages on TS are at www.mentalhealth.com/book/p40-gtor.html and the TSA Inc site is at www.tsa-usa.org/
Cambian Education Services run seven residential special schools and colleges for young people with autistic spectrum disorders, Asperger Syndrome/HFA, severe learning difficulties. OAASIS can give you advice on the schools and send you their prospectuses.
OAASIS produces 8 chargeable publications entitled ‘First Guide to…’; wallet sized cards explaining 9 learning disabilities and a wide range of free Information Sheets. Please contact OAASIS for the full list, or view them on the website at www.oaasis.co.uk. All the information sheets are checked annually, please ensure you have the current version.
Note: The OAASIS Information Sheets use ‘he’ ‘his’ ‘him’ rather than the cumbersome ‘he / she’ ‘his / her’ ‘him / her’. No sexism is intended.
© OAASIS (Office for Advice Assistance Support and Information on Special needs) This article can be freely reproduced with due attribution of authorship.