A website dedicated to embracing the awesomeness of Tourette’s Syndrome went viral enough to crash, after an article in U.K. newspaper The Independent was picked up by the BBC. The site, TourettesHero, was created by Jess Thom, who has Tourette’s, which she calls “the most frequently misunderstood syndrome on the planet.”
TourettesHero features a superhero character, created by Ms. Thom, who “celebrates the humour and creativity of Tourette’s.”
Tourette’s Syndrome is kind of always on my radar because there’s an overlap with Autism Spectrum Disorders. It takes a skilled clinician to tease out the differences between the vocal and physical tics of Tourette’s from the stims and echolalia (repetition, or echoing, of words and phrases) of ASDs. People with autism are also more likely than the average population to have Tourette’s.
Instead of seeing Tourette’s as something to be embarrassed by or ashamed of, Ms. Thom embraces it. Her website features many of her vocal tics, which are words or phrases that pop into her everyday conversation. As part of the site’s goal to “take ownership of the laughter associated with Tourette’s in order to provide a genuinely funny cultural alternative,” readers of the website are invited to submit artwork to illustrate the tics. The artwork is then added to the site’s Gallery, which features art from kids and adults alike. Some of the artwork is incredible.
Other goals of TourettesHero are to to suggest informal ways of dealing with the challenging social situations that people with Tourette’s often face, and to run innovative events for children and young people with Tourettes that focus on the value of play, interaction and social inclusion rather than any associated ‘problems.’
One of my daughters has a classmate who has Tourette’s and we used TourettesHero this week as a way to help my kids understand Tourette’s, and why their friend sometimes busts out really “random,” often hilarious phrases.
“Everyone thinks he’s awesome,” my daughter told me. “He says really funny things, which makes my class way more fun.”
I asked her if she thought kids were laughing with him, or at him. “Totally with him,” she said. “Everyone knows that’s just how he is. He can’t not say that stuff. But the things he says are awesome.” Indeed, some of her classmate’s vocal tics have become classroom catchphrases.
My daughter’s class may be the exception to the rule, though. When I read the article about TourettesHero on The Independent’s website, some of the comments were shockingly ignorant, including one that stated that “There is no such thing as ‘Tourette’s Syndrome’,” and “Jess Thom’s so-called ‘neurological condition’ is an ACT, which she does to get attention, special treatment, etc..”
If you listen to Ms. Thom’s BBC Radio clip, there’s just no way anyone would fake this.
Perhaps the best part of TourettesHero is the FAQ page, which explains Tourette’s and busts the myths in plainspoken language. Some things I didn’t know:
- Incredibly, Ms. Thom is often asked if she is possessed. I assume this is kind of like how, when my twins were babies, people would actually ask me which one was the evil twin. ”Some people think the movements and noises of my tics are an indication that I’m possessed by a demon. The simple answer is no, I’m not. I usually respond to this question by asking why an evil spirit would make me shout about squirrels and biscuits.”
- Like autism, Tourette’s is frequently seen with co-morbid disorders. “Over 85 percent of people with Tourette’s have more than just tics,” says Ms. Thom. Common additional conditions, known as co-morbidities, include: Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD).”
- Contrary to popular thought, most people with Tourette’s don’t swear. “This aspect of Tourette’s only affects 10 percent of people who have it,” says Ms. Thom, who has both Coprolalia (using obscene or unacceptable language) and Copropraxia (making obscene or otherwise unacceptable movements or gestures.”
Speaking of swearing, parents who want to check out the TourettesHero should know that they can use the bar at the top of the site to change the site to “SafeMode,” which will hide any mention of tics that have obscenities in them.