Tourette Syndrome Awareness Month occurs from May 15 to June 15, 2024. As the mother of a son with Tourette’s I find it funny that such a quirky disorder has made up a month in the middle of two months. But, with just a few days left of this awareness “month,” I wanted to share our story.

Understanding Tourette Syndrome

Tourette Syndrome Awareness Month is a period dedicated to increasing public knowledge and understanding of Tourette Syndrome (TS). This awareness campaign aims to shed light on the challenges faced by individuals with TS and their families, promote acceptance, and advocate for better support systems.

By focusing on education and awareness, this month aims to dispel myths, reduce stigma, and encourage a more inclusive society for those living with Tourette Syndrome.

Tourette Syndrome is a neurological disorder characterized by repetitive, involuntary movements and vocalizations called tics. These tics can range from mild to severe and may include simple motor tics, such as eye blinking or shoulder shrugging, and complex vocal tics, like repeating words or making sounds.

My son’s first tic started as a toddler, with a little cough or throat clearing. I thought it was allergies, but none of the medication I tried helped. It eventually went away but was replaced by other tics like blinking and finger tapping. I took him to the doctor and was told to just ignore it and hope it goes away.

And it would go away, but every time it would be replaced by another tic. After four years of “hoping it goes away,” he was diagnosed with Tourette Syndrome (TS) at 8-years-old. By that time, he had a full range of motor and vocal tics, including very obvious tics like a shoulder shrug and constant squeaking noise.

The exact cause of TS is still unknown, but it is believed to involve a combination of genetic and environmental factors. Typically, symptoms first appear in childhood, and while they can vary in intensity, many individuals experience a reduction in tics as they grow older. But the most intense time is usually between 8-12, so we are currently in the thick of it.

Dispelling Myths About Tourette Syndrome

One of the primary goals of Tourette Syndrome Awareness Month is to educate the public about the nature of the disorder. Misconceptions about TS often lead to misunderstandings and social stigma.

When my son first starts exhibiting tics, I never even thought of Tourette’s. I was Googling “autism” and related disorders, trying to find something that matched his behavior. My only knowledge of Tourette’s was of coprolalia, which when people shout out obscenities and do obscene gestures, because that’s what they always do in movies or TV. It’s not quite as funny if it happens in real life.

Not everyone with TS exhibits the same type or severity of tics, and the condition can fluctuate over time. By providing accurate information and personal stories, awareness campaigns like this one strive to humanize the condition and foster empathy.

Another significant aspect of this awareness month is advocating for better support and resources for individuals with TS and their families. This includes promoting research into the causes and treatments of Tourette Syndrome, as well as supporting policies that ensure access to necessary medical, psychological, and educational services. Organizations dedicated to TS often use this time to fundraise for these initiatives, highlighting the ongoing need for comprehensive care and support.

The Tourette Association of America has lots of resources and information about TS, along with details on getting involved and raising awareness. You can find their website here: https://tourette.org/.

Early Diagnosis and Intervention

Tourette Syndrome Awareness Month also emphasizes the importance of early diagnosis and intervention. Recognizing the signs of TS early can lead to better management of symptoms and improved quality of life.

It’s important to note that TS also comes with comorbidities like OCD, ADHD and learning disabilities. My son has OCD and ADHD as well, and we’ve been working with a therapist to help overcome some of those issues.

Parents, teachers, and healthcare providers are encouraged to be vigilant and knowledgeable about the disorder so they can offer appropriate support and guidance. Early intervention can include behavioral therapies, educational accommodations, and in some cases, medication to help manage more severe tics.

We tried medication which did help when the tics were very severe, but once he got them more under control, we weaned off the meds because he hated taking them. We also tried Comprehensive Behavioral Intervention for Tics (CBIT) and recently decided to take a break from it. I’ll be covering more about that in a future post.

I’ve learned a lot about Tourette Syndrome in the past year and continue to learn as we deal with new things. I feel we are lucky to live in a day and age that is more accepting of neurodiversity and the people dealing with it. I have my own issues and have gone through some of the things my son is experiencing, however, as a 70s/80s kid I was never diagnosed as a child, and they had no idea what to do for me.

I am thankful my son will have a different experience and hopefully will be able to work through and overcome some of the challenges that come with the unique way his brain works.

About the Author

Candy Keane is a digital content creator and long-time cosplayer, most well-known for being on the cover of the Star Wars documentary Jedi Junkies. After making costumes professionally for over a decade, she now writes about about geek culture and mom life, and continues to cosplay for fun, while sharing her love of costumes on Instagram @SewGeekMama. Her first children’s book, I’m Going to My First Comic Convention, was published in 2020 and won a Story Monsters Approved award for Excellence in Literature.

Learn more