Learning about Tourette syndrome

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This article was published 15/10/2019 (2404 days ago), so information in it may no longer be current.

It may have been serendipitous that the year after a doctor diagnosed Lorne Perrin’s son with Tourette syndrome, a national conference on the condition rolled through Winnipeg.

The family from Whyte Ridge was just beginning to understand the syndrome that affects roughly one in every 100 people, but has time and again been sensationalized in popular media.

“When you get diagnosed, you sort of go into a holding pattern,” Perrin said. “Tourette syndrome has got a bit of a slant on it where people feel that you’re just crazy. It does have a stigma.

“So you go through all of that, and then you go through the information craze and you want to become more aware and build your strategies which makes it easier for the child.”  

The Perrins signed up as a family and took in all the conference had to offer.

“We received a lot of information, so it took us some time to digest it, but because they brought in professional people from different segments… we certainly learned more about the syndrome and family strategies as well,” Perrin said. “That was really the big thing about it: learning more and learning that it’s not the end of the world and there are things you can do at home.”

The Tourette Canada National Conference returns to Winnipeg this week, and Perrin, now a decade-long board member of the national governing body is serving as the volunteer conference co-ordinator.

“You’re connecting with others who are going through the same situation,” he said. “That networking and talking amongst yourselves is valuable time as well.”

Joseph Goulet, an educational psychologist and senior scholar at the University of Winnipeg, will be delivering a keynote address at the conference on the history, symptomology, interventions, and comorbidities of Tourette syndrome.

“The whole point about the conference is awareness and knowledge about the disorder and what it is and what it is not,” Goulet said.

The biochemical neurological development disorder named after Georges Gilles de la Tourette is often diagnosed at age five or six, Goulet said, and tends to occur more frequently in males than females. The syndrome has two key symptoms: a vocal tic and motor tic that can range from simple to complex, and can be mild to extreme in severity.

Simple motor tics can include eye rolling and shoulder shrugging while complex tics include jumping and kicking. Simple vocal tics can be coughing or clearing your throat, and complex tics are often sentences or phrases.

Tourette syndrome can also occur as part of what he calls the Big Four neurodevelopmental disorders: attention deficit hyperactivity disorder, autism spectrum disorder, obsessive compulsive disorder, and Tourette.

“The four are very often interconnected,” Goulet said. “If one has one of these, there’s a good chance they may have symptoms of the others. We call that comorbidity.”

“There’s a lot of interplay and that makes it complicated because of diagnosis and treatment,” he said.  

The conference is set up holistically to accommodate a range of interests, needs and professions, Perrin explained, with four tracks: educators, general, youth, and children.

“There’s the general program which is a two-day session, usually a Friday and Saturday, and that’s for moms and dads and adults and those people interested in finding out more about Tourette syndrome.

“We encourage educators to come down for the one-day program and we have professional presenters that give them classroom skills and strategies.”

Perrin said the youth and child tracks create opportunities for kids to meet others with Tourette syndrome and share experiences, build relationships and get some fun activities at the same time.
“It’s quite often that a child feels alone and singled out. They become quite comfortable with each other and really become friends,” he said.

The Tourette Canada National Conference runs Oct. 17 to 19 at Canad Inns Destination Centre Polo Park. For more information go to tourette.ca