As a parent with a child living with Tourette Syndrome (TS), I know all too well the misconceptions about the condition and how these continually lead to negative experiences for those within the TS community.
In fact, new research by Tourette Syndrome Association of Australia (TSAA) indicates this limited understanding about TS among the general population, with nearly half (49%) of people in the TS community saying members of the public stare at them, while two thirds (62%) say people seem unsure on how to respond to tics.
Additionally, a third (32%) of Australians have made assumptions about someone exhibiting tic’ing behaviour.
It is these assumptions that perpetuate the misconceptions experienced by individuals with TS. I didn’t know much about it until my son Cameron was diagnosed, so it has been a steep learning curve.
When Cameron was around 11, I started to notice some “odd” behaviours. One of the main behaviours I noticed was that he used to lick his hands a lot.
In retrospect, they were happening from the time he was two. He’d been diagnosed with ADHD (Attention Deficit Hyperactivity Disorder) beforehand but I started to notice odd things and thought, ‘Oh, maybe that’s Tourette’s’ and decided to look a lot more into it.
However, my own misconceptions about the condition clouded my judgement. In fact, my colleagues and I at work thought Tourette Syndrome presented itself as uncontrollable swearing.
This misconception within the general public is not uncommon, with most people believing this to be the only tic. However, this variation of the condition, known as Coprolalia, is only present in just 15-20% of those with TS.
More common forms of the neurological condition include motor and vocal tics. In fact, to be diagnosed, you have to have at least two verbal tics and one motor tic for a 12-month period. Tics are on a spectrum, meaning they can be minor and barely noticeable to extreme.
Once I had looked into the condition a bit further, and with the help of my husband, we were able to get Cameron diagnosed. By this time, Cameron was also flicking his head and blinking a lot.
Then he started making a lot of noises in his throat, which was a big thing. Other kids in his class started to notice. He was in Grade 5 at the time and was giving a speech and some kids sitting in the back of the room started mimicking little things he was doing.
Naturally, this was very upsetting for Cameron and one of his friends came to speak with me to let me know. Luckily, his teacher spoke to the class to help resolve the issue.
For most people with TS, tics are typically more severe during times of stress and anxiety such as standing in front of a class and giving a speech.
While these misconceptions about TS are rife among the general public, this also worryingly applies to first responders such as police, paramedics, firefighters, and state emergency service workers.
While first responders play a vital role in our community, the research reveals only 28% of people with TS describe their encounters with first responders as positive, compared with the vast majority of Australians (96%) who describe their overall experiences with first responders as positive.
Concerningly, one in five (20%) people with TS say first responders confused tic’ing behaviour with being on drugs, while almost a third (29%) say they confused tics with erratic or violent behaviour. Such misunderstandings regarding tics have resulted in 12% of people with TS saying they felt they were treated like a criminal for tic’ing.
On one occasion during a trip to a lake as part of a Tourette Syndrome support group, Cameron and other children with the condition were at the lake which was attended by a lifeguard. A couple of the kids that day have Coprolalia. We were just minding our own business but they were swearing and the lifeguard told them to stop swearing.
They were 13 and tried to explain their condition to him, but he didn’t believe them. So I went and talked to him and he didn’t believe me either and was a bit arrogant about the whole thing. It was only when my husband came over that the lifeguard finally listened.
Thankfully, the lifeguard’s supervisor was able to diffuse the situation, but the damage was already done, and the situation had left the kids feeling upset and guarded.
This situation faced by Cameron and his friends is just one of many instances of first responders failing to fully understand behaviours relating to TS, leading to negative outcomes for individuals with the condition.
As Cameron approaches his 18th birthday, I worry with how he will be treated when he goes out clubbing and engages in other normal activities of people his age. For instance, if he’s had a few drinks, that may set some sort of extreme tics off, and people may respond negatively or with hostility.
While I am happy to see awareness of conditions such as ADHD and Autism Spectrum Disorder (ASD) on the increase, other neurological conditions such as Tourette’s Syndrome are being missed.
Improving interactions between not only the general public, but also first responders and the TS community hinges on breaking misconceptions through education on TS and its symptoms.
It is vital that the TS community’s voices are heard and understood, and the stigma surrounding TS is broken. It is time to provide individuals with TS with the same level of respect and care as the rest of the population.
Everyone deserves the right to live without fear of negative or traumatic experiences with first responders. It is time for us to do better and ensure that individuals with TS are treated with dignity and respect.
For more information on Tourette Syndrome and how we can assist with increased understanding, visit https://tourette.org.au/.
Disclaimer: This article provides general information only, and does not constitute health or medical advice. If you have any concerns regarding your physical or mental health, seek immediate medical attention.