Three myths and misconceptions about Tourette Syndrome
We invited Mandy and Connor Maisy, President and Ambassador of the Tourette Syndrome Association of Australia to talk with us on the Grow Bold with Disability Podcast and help us break down three of the biggest myths around Tourette Syndrome.
People with Tourette Syndrome experience a range of motor or vocal tics that can be either simple or complex.
Only about 10% of people with Tourette Syndrome have Coprolalia which is a vocal tic causing them to say obscene words, phrases or racist slurs.
President of the Tourette Syndrome Association of Australia, Mandy Maisy explains the other ways tics can present.
“(There’s) also copropraxia, which is obscene gestures, so you will see some people with Tourette Syndrome give people the finger or make other obscene gestures. There’s also Coprographia, which is obscene writing. So sometimes
you’ll just get rude texts from people or penises drawn on things. That’s a common one. I actually end up with the word penis written on my arm quite a lot by my youngest, because she has Coprographia as well. And then you’ve
got Echolalia, which is echoing things that other people say and Palilalia, which is repeating the things that you’ve said over and over again.”
As Mandy explains, Tourettes is a “Neurological condition where the brain produces too many neurotransmitters and the brain’s natural brakes aren’t able to stop them – so they get overwhelmed. The neurotransmitters
are things that transmit messages for movement or sound vocalisations and things like that. So the brain just gets overwhelmed. It has leaky brakes. The body ends up making strange movements, which are called tics, or
strange vocalisations like sniffs grunts, words, phrases, swear words.”
Mandy’s son, Connor Maisy was in his very early 20’s when he first began experiencing noticeable tics.
“I went from what I would consider a simple motion tic where I would just throw my head backwards… to within nine months, I was saying complete complex sentences. I was saying complete racist sentences while with my friends trying to buy a
sandwich or whatever,” says Connor, speaking on the Grow Bold with Disability Podcast.
“Sometimes I’ve gone for a week and a half without a tic at all. And it seems really strange because I’m like maybe that’s it forever. Or maybe I’ve been faking this entire time for 4.5 years. And then all of a sudden, a week
and a half later, I go ‘piss’ and I’m like, oh no, there you go.”
“I’ve definitely got Tourettes. It’s not gone anywhere.”
Connor has been “happily employed” for an online clothing business, Princess Polly for about two years.
“I swear and I slap my desk a bit, but other than that, my KPIs at my job are actually better than anyone else. Like I’m fantastic at my job. I just swear while I’m doing it.”
However, prior to finding his current job, it was “exceedingly difficult” for him to find work. He explains that even when he was working with a specialist disability employment service provider he was
told to try to hide his tics or lie about their severity, because people wouldn’t hire him otherwise.
“More often than not, it’s just people aren’t willing to give us a shot. They think they can’t handle it and that it’s going to be a lot of work. And for the most part, it’s not.”
“Doctors say that it fades with age, but doctors are generally not correct about that,” says Connor.
“What you get better at is hiding it and controlling it. You know, the more often you do a tic, the more you recognise when it’s going to happen. And the older you get the more you are able to almost like have a level of self-awareness
in your brain to not do it.”
As an Ambassador for the Tourette Syndrome Association of Australia, Connor speaks with children about his condition and works to make sure people have a better understanding of what it means. He’s both philosophical and funny about the
impact Tourettes has on his life.
“I’ve actually just learnt to kind of just roll with it, and it’s like I’ve given mine a name. His name is Barry. He’s a bit of a racist arsehole, it’s almost like I’ve grown detached from the things that come out when I have the tics,
you know. So, it’s almost like I can laugh at them as if it’s like some horrible person has said them instead of me.”
“The main thing we need is just acceptance of ourselves and from other people.”
Grow Bold with Disability Podcast.