Tourette Syndrome Awareness Week: What first responders miss

Tourette Syndrome (TS) Awareness Week (TSAW) kicked off yesterday and spans May 1 – 7, but new data suggests that TS is still widely misunderstood and people living with it are feeling the burden of public judgement.

Tourette Syndrome Association of Australia (TSAA) research has revealed that only 28 percent of people living with TS describe their experiences with first responders as positive, compared to 96 percent of the general public.

Tic’ing, which can present in many different forms, is the involuntary, fast and repeated movement or sounds made by a person with TS — a condition which impacts the nervous system.

A further 39 percent of people living with TS in the nation describe their experiences with first responders, such as paramedics, firefighters and police, as “stressful” and 14 percent consider their experience as “traumatic.”

TSAA research also found that

• 12 percent of people living with TS feel that their tic’ing felt criminal in the eyes of the public
• 20 percent of first responders assumed that tic’ing behaviour was the result of drug use
• 29 percent associated tic’ing with violent or unpredictable behaviour
• 49 percent of people in the TS community feel that they get stared at in public
• 62 percent of people around them felt unsure how to respond to tic’ing and nearly a third of the public have made assumptions about someone tic’ing

TSAA President Mandy Mayser says that the stigma surrounding TS and tics is concerning and has called upon first responders and state workers to train staff and educate them about the condition.

“The misconceptions and lack of education surrounding TS could be a contributing factor when it comes to negative interactions between first responders and the TS community,” says Ms Mayser, “the research tells us that a lot of the issues experienced by the TS community in their interactions with first responders stem from misunderstandings about TS.”

“It’s vital we improve this situation, so I urge senior staff in first responder professions such the police force, paramedics, lifesavers and firefighters to implement proper training about TS and what its symptoms can look like, as well as to engage with the TS community to learn about their unique needs.”

In the article ‘Talking to kids about disability,’ Disability Support Guide discussed the impact that words and attitudes have on people living with conditions or impairments, but for tense encounters with emergency responders, people with TS may risk their lives or reputations due to a lack of awareness.

James Sayers, who lives with TS, spent a night in custody after being unjustly arrested by police who mistook his tic’ing behaviour as that of a drunk and disorderly person.

“I was with a friend, and I ended up getting arrested and locked up for the night, with the police’s reason being that I was drunk in public. The problem was, I was sober and knew I would be under the limit, but when I asked them to breathalyse me to prove this, they refused to do so,” says Mr Sayers.

“I felt completely powerless in that situation, and because I was feeling stressed and anxious, I started tic’ing even more, especially after I was cuffed. However, when I told the officer about my TS he didn’t seem to care at all and proceeded with his heavy-handed treatment of me.”

This year, as TSAW begins, the non-for-profit organisation is encouraging first responders and their leaders to get in touch and give their feedback to TSAA, so that they can create an informative training video that will help responders and the wider public learn more.