A late Diagnosis

Posted Wed 28th Apr 2021 at 12:44
by Rob Gifford

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Hi, my name’s Rob, I’m 52 and I was diagnosed with Tourette Syndrome in 2020.

My tics started when I was around 6 years old. Eye rolling and squeaking were the first tics I remember. Also, around that time I recall sitting on a kitchen chair and rocking backwards and repeatedly banging my head on the wall. I wouldn’t sit on slippery leather or PVC upholstery or wear denim or corduroy, I didn’t like the sensation of these surfaces or fabrics, and I’d go berserk if I was taken to get a haircut!

These behaviours are possibly linked to a co-occurring condition of Tourette Syndrome. As time went on, again still in those early years between 5 and 10 years old, I started head shaking and shoulder shrugging and hopping and jumping which really drew attention at school. This was in the mid to late 1970’s, and as far as I’m aware nobody had heard of Tourette Syndrome! I was told to sit still and “stop doing that boy!” so I learned to suppress my tics. At home I would reach through the guard of the electric fire and quickly touch the bars, I would tap the hot electric ring of the cooker with my hand when no-one was looking, I just had to do it.

Other tics came and went in my teen years such as swearing, obscene gestures (I still do that), throat clearing and an urge to brush the side of my face. I still have this tic – it’s a feeling that gradually grows, a tingling sensation, like you’ve walked through a spider’s web in a doorway that you have to brush away.

I can suppress my tics for quite a while and I developed a technique of blending a quick head shake or eye roll when someone I may be talking to momentarily glances away. Because of this finely honed ability to hide my tics, I guess I felt that I’d neatly tucked this problem away, I had no idea that I had Tourettes. I’d heard of it by my late teens but that was something I’d seen on TV.

I was regarded as being of high intelligence at school with good ability but I was agitated and a very patchy work life followed school. Always jumping from one thing to another, very unsettled and highly anxious. I somehow managed to get through my 20’s and 30’s, but the years of tic suppression and coping with a muddled mind and a sense that I’m just different started to take their toll. By my 40’s I’d started to burn out and became very fatigued. I experienced a private rage and depression because I knew something wasn’t right but just didn’t know what. I started to search for answers.

Enter Tourettes Action, via an internet search. Tourettes? Really? Me? And so started my journey to diagnosis. I was referred to St Georges by a very kind and understanding GP and was diagnosed in 2020, The TA website gives information on the possible most likely co-occurring conditions and during my consultation with the consultant at St Georges he mentioned that I am most likely on the autistic spectrum and exhibit behaviours consistent with attention deficit disorder.

AHHHHH,…….. SO THAT’S WHAT IT ALL IS !

I’m now due to see a local specialist in ASD. Of course, nothing can change the past but I would like to learn how to manage my time and energy more efficiently.

I owe a great debt of gratitude to Tourettes Action. Firstly, for providing a place where I could access such valuable information that helped to end years of frustration and confusion. Also, through the TA adult zoom meetings, for the first time in my life I have met others with very similar experiences. After a lifetime of confusion and bewilderment and sometimes quite harsh self-criticism, I have started to be a lot less self critical. Learning to cut myself some slack. If I have to be around people or get involved in activities in general, I tire cognitively, and need some space so I allow myself that without a sense of guilt.

It’s been quite an isolated road in some respects, but it couldn’t have been any different, I am who I am. A ticcer. And that’s OK.

Whoever may read this, whether a fellow Touretter or a family member, I really wish you well on your journey of life and discovery. I hope you find answers, some guidance, maybe community. We don’t have to be alone.

With compassion. Rob

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