When did you find out you were Autistic and had TS? And what were the events leading up to this.
I was diagnosed with autism when I was 16, and the Tourette’s diagnosis came a few years later, though the tics had been present for a while. Things changed for me in the lead-up to Year 10 Work Experience. Before this, I spent many years hiding how hard things were for me – I was quiet and shy. I did my best to blend into the background by getting on with my schoolwork, but as social demands increased and expectations changed, it became harder to ‘mask’. Finally, after a conversation with the deputy head teacher at my school, he mentioned that some of my difficulties were like those of other young people he had worked with. He said they were autistic, and so began the journey to realise I am autistic too!
How did you feel about getting the diagnosis?
I was initially relieved to know that I was not ‘failing at being neurotypical’; I was just a ‘normal autistic person’, but I did not realise how helpful the autism diagnosis was then. Looking back, finding out that I am autistic was an essential part of understanding myself and learning what works for me. I was able to have lots of help with transitioning to university, something I may not have otherwise been able to manage.
The Tourette’s diagnosis helped me explain to people that, what appeared to be bizarre movements and vocalisations to those around me, were due to a neurological condition and that I couldn’t help it. Although tics can sometimes be suppressed, the need to tic is involuntary.
What was your experience of school and how did that affect you growing up?
I loved parts of school – I loved learning, and I loved having a routine and a timetable. I was probably one of the few students who enjoyed having a ‘seating plan’ and wearing a school uniform as it was the same every day! However, schools are busy and loud, and sometimes things would change unexpectedly (like having a supply teacher or the timetable changing), which caused me huge amounts of anxiety.
Have the characteristics of TS changed since childhood vs adulthood?
In my early teens, I had some excessive eye-blinking that I did not know were tics. It was put down to me being anxious, but a series of stressful events caused my tics to intensify. My motor tics were constant, and the vocal tics were loud and difficult to ignore. People could hear me coming before seeing me, and I found being noticed like that very difficult to cope with.
As an adult, my tics are no longer as severe as they used to be, though they continue to ‘wax and wane’, which is a typical feature of TS.
How does being Autistic and having TS influence your life now (work, friends, partner, family etc)
Being autistic affects every part of my life, from how I take in sensory information to how I communicate. Having TS alongside that can be strange – my autistic brain loves predictability, and the only predictable thing about TS is that it’s unpredictable!
Unless I am going through a tough time with my tics, I would say that most people wouldn’t realise I have TS as I have learned different ways to manage and disguise it.
What’s the most challenging thing about having TS?
The unpredictability! Some days there may be few tics, and other days lots of tics. Sometimes the tics don’t bother me, and other times they do. Sometimes the triggers are clear and other times; they are not.
What positives are there for you living with TS?
I have had the opportunity to meet and work with others who have TS, which has helped me feel less alone having this condition. I know one young person with TS who has made massive progress over the last few years. From not wanting to talk about his tics to being so open and honest about how he feels and even using humour at times! He deals with it much better than I did at his age, and it has been wonderful to see him grow in confidence.
What are your feelings towards having TS now?
I’m ok with having TS now (most of the time!). I struggled a lot when my tics were at their worst, and I often didn’t want to leave the house. I had a lot of support from my mum and brother and those around me at the time. Eventually, I learned how to explain it better to others and feel more comfortable doing so. I have been lucky that the positive reactions have outweighed some of the negative ones.
What do you wish you could go back and tell 8 year old you?
You will have many challenges coming your way, and there will be times when you think you can’t get through it, but you will, and you will learn that from struggle comes strength.
You will go on to help others, making all the hard times worth it, and hopefully, other young people will not have to face as many difficulties as you did.