It’s easy to get fixated on the tics, isn’t it? The sudden vocalizations, the involuntary movements – they’re the most visible, the most outwardly disruptive aspects of Tourette Syndrome. And for a long time, that’s pretty much where the conversation stopped, especially in medical circles. But as Laura Beljaars, who was diagnosed with Tourette's at 11, points out, this narrow focus misses a huge part of the picture.
Laura, now supporting children and families affected by Tourette's, highlights a statistic that really makes you pause: a staggering 86% of people with Tourette's also have other diagnoses. Think ADHD, OCD, autism spectrum disorder, depression, anxiety. When the co-occurring conditions are that prevalent, it begs the question: are we looking at Tourette's in its entirety, or just a very specific symptom?
For Laura, the tics themselves are often not the primary struggle. She talks about concentration issues, challenges with executive function, sleep disturbances, and a heightened sensitivity to everything from fabrics to spoken words – both over- and under-stimulation can be overwhelming. The tics, she says, are “maybe 10th on the list of my Tourette’s-related problems.” And while tics can be painful or annoying, she’s found ways to manage them, like Botox or physical therapy.
Her sister, Diana Beljaars, a research fellow at Swansea University, adds another layer to this. She suggests that tics are often an “onlooker’s thing.” The real disturbance, she muses, happens in the person observing the tics, trying to interpret them. Are they a genuine expression of something the person wants to say or do? The answer, Diana clarifies, is generally no. Tics aren't intentional; they might be a reaction to the environment, but they don't carry a specific message.
This brings us to the growing conversation around neurodiversity. While conditions like autism and ADHD have found a stronger foothold within the neurodiversity movement, Tourette's is still catching up. Diana notes that tics can appear more “biological,” making it harder to frame them as an expression of identity compared to other neurodivergent traits. Yet, especially during the pandemic, social media saw a surge of individuals with Tourette's sharing their experiences, aiming to normalize the condition and challenge the clinical model that often pushes for hiding tics as a sign of improvement.
This intense focus on tics, while necessary for diagnosis, can indeed be limiting. Laura observes that when she meets with young people diagnosed with Tourette's, they often default to describing their tics. It takes probing questions to uncover the full spectrum of their experiences and potential co-occurring conditions. If we only look at tics, she warns, we risk missing other issues that contribute to overall tension, and less tension often means fewer tics.
For research, this emphasis on tics also presents challenges. Diana explains that to make a claim about Tourette's, researchers often have to focus on tics as the defining characteristic, which can narrow down the pool of eligible participants considerably. Even in studies aiming for broader outcomes, like quality of life, the need to adhere to a strict definition of Tourette's can force a focus back onto tics.
It’s clear that a more holistic understanding of Tourette Syndrome is needed – one that acknowledges the complex interplay of tics with other neurodevelopmental and mental health conditions, and truly centers the lived experiences of individuals with Tourette's.
