Letter to Schools

Dear Sir or Madam,

Please find enclosed an information leaflet about Tourette Syndrome. Even as a health professional, I have only learned about Tourette Syndrome (TS) during the past 12-18 months when I finally realised – after many years of multiple varying tics – that my son has TS.

His tics started at the age of 3 – sniffing, humming, mouth opening, blinking, grimacing etc. It was only when he was at the end of Year 6 at Primary School that I realised the tics were something more than the “nervous habits” I was lead to believe they were. He’d started more obvious and distressing head movements which he could not stop (I’m ashamed to say I did ask him to stop) even though he wanted to. Whilst researching on the internet, I discovered Tourette Syndrome – a neurobiological condition. For diagnosis of TS there needs to be multiple (changing) motor tics (movements) and at least one phonic tic (sounds), for the tics to have started more than a year ago, and before the age of 18.

Recent research shows that as many as 3% of the general school population has TS – and most are probably unaware, having a mild presentation of the condition. TS only usually comes to the light of medical and teaching staff when it presents with its associated disorders of Attention Deficit Hyperactivity Disorder (with or without hyperactivity) and Obsessive Compulsive Disorder. There can be other neurological conditions present with TS – my son has Sensory Integration problems with Dyspraxia, and Anxiety.

TS is widely misunderstood. Earlier this year it featured on the TV documentary series “School Days” which many of you may have seen. The boy featured was being punished for his involuntary movements and sounds. My son has never experienced punishment from his teachers, although he has to cope with some teasing from his peers. Ask a child to stop making that noise, and the likelihood is that the tics will increase – stress will increase them. A child may be able to suppress the tics for a little while – in the same way that you can hold your breath or stop blinking. But he/she will eventually need to release the tics. If they have been suppressed, the tics often present in a flurry. It often takes much concentration to be able to suppress the tic – which can lead to a child losing chunks of the lesson. The website gives further explanation about the experience of tics. TS does not affect intelligence, and many sufferers have above average intelligence and excel in some areas, such as music. Samuel Johnson is one example of famous people with TS.

I would commend you to purchase the book ‘Tourette Syndrome – A Practical Guide for Teachers, Parents & Carers’ by Professor Mary Robertson and Amber Carroll (David Fulton Publishers). It is part of the series 'Resource Materials for Teachers'. The book offers factual information about TS, and provides strategies for schools etc. More information about the book and about Tourette Syndrome at the website www.tourettesyndrome.co.uk (you can order the book from there too). The website also has links for information about the associated disorders such as ADHD, and an Education page, with many links for information specifically for educators about TS, such as those which give advice about strategies for use with students with TS.

I would be very grateful if you would encourage all your teaching staff to read this letter, and the accompanying leaflet, including of course, your special needs co-ordinator. It is vital that our children are understood and supported, their self-esteem protected and education encouraged.

Please contact me via e-mail if you would like any further information.

Thank you

tosy@tosy.co.uk