My experience living with Tourette syndrome

Posted 6hrs ago
by Anthony Williams

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A short autobiography by Anthony Williams

Since I'm currently studying at university with a view to a major in Photography, I don't think it's inappropriate to say that what follows are a few 'flashbulb' pictures of some of the things living with Tourette syndrome (TS) has meant to me.

My very early medical records only say that I was a little bit late to start walking and also talking (but I make up for the latter quite a lot these days!) But by age seven, some concern is evident regarding tic behaviour and various assessments where thereafter undertaken at fairly regular intervals through childhood. At about nine, a big mistake was made, and I was sent for the rest of my formative educational history to a local specialist school for Downs Syndrome individuals. Here, we were taught such matters as handling interpersonal relationships and how to tie shoelaces, etc. All very practical but largely absent was tuition in reading, numeracy skills, science, and so on. And 'interpersonal relationships' training did not stop a certain amount of persecution from other kids who used to call me Noddy, for example. It was all rather unfortunate since intelligence is not compromised in TS, and nor are your feelings.

The first suggestions that TS really was present come in early teens, when the medical records hint strongly at this, but 'no ADHD' was at least detectable, they say. In these times, TS was thought to be rather 'behavioural', like the bad habit of a sassy child merely attention-seeking. Many medics and parents were reluctant back then to diagnose TS since they guessed that might only 'reinforce and confirm' the child's bad and undesirable habits. It wasn't until very recently that I got a diagnosis from a clinical neurologist in my late 20s.

Of course, it still doesn't help all that much even now that we know TS is neurologically precipitated, just like MS or Epilepsy, for instance. There are plenty of examples of this:

Not long ago, I got stopped at PRIMARK for a bag and body search as I was leaving because store CCTV had seen me glancing left repeatedly and blinking while examining some shirts, and they thought I was looking for an 'all clear' moment to nick one! I was found to be innocent of course. Or the evening going back home where two bobbies, pulling me over, wanted to know what drugs I was using; they'd seen and heard me gesticulating, whistling sporadically and kicking my leg behind me as I walked, and assumed I was off my head. Or how about the controversy and financial costs with your cell phone provider because you are forever, involuntarily, casting them out of your hand, sometimes breaking the screen or worse? Then there are the aggressive accusations of boyfriends on public buses or trains for repeatedly taking glances at their girlfriends and winking-blinking oddly. Sometimes, even worse, the 'boyfriends' think you're doing it at them!

It is bad enough coping with these out of place and impromptu convulsions that can get you into trouble or cause you strain headaches, for instance, but it's even worse that the public generally have not been made aware that 300,000 persons in the UK live with the condition and how to spot the signs (that's the size of a moderate size city population). That's why I, and we, desperately need organisations and membership to groups like Tourettes Action.

I have all of the top ten key symptoms of TS (Mayo Clinic list) and more but, fortunately, relatively moderately most days, and I have learned a lot about coping. I am also happy to be on Nottingham University's 'Neuropulse' research…. I'd love to get them and Tourettes Action over to my Wolverhampton Uni to do presentations there as well.

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