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Masters student chooses TS as subject for research
Posted Tue 29th Aug 2023 at 08:27
by Jennifer Barber
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I could have chosen a wealth of topics for the subject of my Masters in Psychology (conversion), but when I was advised to choose a topic that struck my interest most, Tourette Syndrome has been prevalent in my daily thought process and research for many years.
Ten years ago one of my family members started to display simple motor tics. (For the sake of this blog we’ll call them Charlie).
Their behaviour was puzzling. From a young age we knew the world wasn’t an easy place for them, and meltdowns were a regular occurrence. We so desperately wanted to understand Charlie so we could help, but because of their anxious nature we knew we couldn’t draw any attention to it.
Many days, weeks, months, and years have been spent researching the various behaviours and I began to wonder if it was Tourette Syndrome. However, we weren’t sure if Charlie repeating what we were saying and blurting out random things and song lines was just their personality. When more obvious vocal tics started and lasted for more than a year - we were sure. We spoke to the GP who confirmed the symptoms were signs of TS but as long as it could be managed, there was no need to put Charlie through the diagnostic process.
As Charlie got older the tics varied and the loudness continued, but in school they were a completely different person. Extremely quiet and subdued was how they manifested their behaviour. Much so that it could’ve been perceived that they weren’t always engaged in their learning, and developing friendships can be a challenge. Every time there was a parents evening it was obvious, they didn’t know Charlie and it was like they were talking about a different child. They had no idea who Charlie really was. It was heartbreaking they couldn’t be the vibrant, funny child they were when at home.
I started to think about the perceptions about Tourette Syndrome. Why did Charlie feel like they needed to shut their personality down at school?
They would never want anyone to know and they would not talk about the tics with anyone inside or outside of school.
A few years later when Charlie eventually opened up a little more and was able to articulate better, they explained they were afraid of punishment and consequences. They would resist all temptations to exhibit behaviour (tics) that they thought would draw them negative attention. When Charlie had shown their personality (loudness) on the odd occasion, some kids had made comments such as, “Why are they annoying?”
Louis Capaldi has brought TS to the main stage recently and has been very open about his diagnosis and the impact it has on his life. The media are seemingly sympathetic towards him and one article from The Guardian made me wonder if perceptions about TS and disability as a whole could be changing.
This September (2023) I start my dissertation and I’d love to be able to research the perceptions of Tourette Syndrome. Preliminary research shows there is a definite need for perceptions to change and become more favourable. There needs to be more acceptance and understanding as so many are struggling with the need for help.
This quote from the article in The Guardian shows a hope from the author, but also that there is a gaping hole that needs to be filled to make TS more acceptable:
“Disability is still portrayed as an inherently bad thing, something that cannot coexist with careers, love or happiness. Capaldi’s performance directly challenged this shallow understanding. The realities of his health were not hidden away or kept out of sight until deemed “more acceptable”: disability was front and centre on the Pyramid stage – with joy, pain, and talent alongside it.”
From my research, I’m hoping to highlight if perceptions are changing, resulting in better acceptance of the symptoms manifested where opportunities for those with TS are not suppressed.
If this is something I’m able to pursue, I’m interested to see what the research will bring!
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