Tourette Syndrome Awareness Month: Perspectives From Joohi Jimenez-Shahed, MD

Observed annually in May, Tourette Syndrome Awareness Month aims to increase public understanding of Tourette syndrome (TS), reduce stigma surrounding tic disorders, and highlight the clinical complexities many patients experience beyond motor and vocal tics alone. Tourette syndrome, a neurodevelopmental disorder characterized by persistent motor and phonic tics beginning in childhood, is frequently accompanied by comorbid conditions including obsessive-compulsive disorder (OCD), attention-deficit/hyperactivity disorder (ADHD), anxiety, depression, and behavioral dysregulation.

Over the past decade, growing research efforts have expanded understanding of the genetic, developmental, and neurocircuitry-related factors that may contribute to TS and related tic disorders. At the same time, emerging therapeutic approaches, including novel pharmacologic agents, behavioral therapies, and neuromodulation strategies, have continued to shape discussions around long-term management and individualized care. Despite these advances, substantial gaps remain in awareness, treatment access, and broader understanding of the disorder across both public and clinical settings.

As part of Tourette Syndrome Awareness Month, NeurologyLive^® sat down with Joohi Jimenez-Shahed, MD, professor of neurology and medical director of Movement Disorders Neuromodulation and Brain Circuit Therapeutics at Mount Sinai, to discuss how understanding of TS has evolved, the importance of identifying comorbidities, and ongoing misconceptions surrounding the condition. In this new iteration of NeuroVoices, Jimenez-Shahed also reflected on emerging therapies, unmet needs in care delivery, and the growing role of neuromodulation research in understanding tic disorders and their underlying networks.

NeurologyLive: How has understanding of Tourette syndrome evolved over the last decade, particularly in terms of diagnosis and long-term management?

Joohi Jimenez-Shahed, MD: Tourette syndrome has been one of these conditions that we've always had knowledge exists, but I think some of the information that we know about it has changed a little bit over the years. We still have our basic diagnostic strategy from the DSM, and I think if applied appropriately, we're generally getting to the correct diagnosis.

Part of the challenge is that we still have work to do in educating everybody about Tourette syndrome and why it's so important to make the diagnosis. I think one thing that's developed over the last decade is that we've seen more health record-based information, especially from some European Tourette populations where records are more standardized. We've understood more about some of the risk factors for developing Tourette syndrome.

We've also understood more about the genetic basis for the condition, at least in some cases, although we probably haven't disentangled that enough yet to apply it broadly in diagnostics or therapeutics. I think we've learned more about the natural history of Tourette syndrome and some of the developmental or maternal exposure factors that may contribute to it.

We're also understanding much more about the breadth of the comorbidities and the endophenotypes that exist in Tourette syndrome. We know that it's tics, but most people with tics also have other comorbidities, and we're trying to better understand how all of those fit together.

The other thing that's emerged is more image-based and network-based investigation, partly through deep brain stimulation experience in Tourette syndrome. I think understanding which networks are dysfunctional and may benefit from modulation has taught us a lot. We often learn from why neuromodulation works or doesn't work, and that has helped us map some of these network effects to the symptoms patients are experiencing.

How do comorbidities influence treatment decisions and patient outcomes in Tourette syndrome?

I think it always starts with recognition. It's one thing to recognize tics that are visible or audible and that bring somebody to medical attention, but when we're doing our due diligence as healthcare providers, really asking about the comorbidities is super important. If you don't ask, people may not recognize that those things exist or understand that they're associated with the disorder.

Even though it's not part of the diagnostic definition, upwards of 50% of patients are going to experience things like ADHD or OCD, along with depression, anxiety, or behavioral dysregulation. A person may come for evaluation because of the tics, but those may not actually be the most impairing symptoms for them. It may be difficulties at school because of ADHD, or OCD symptoms that overlap closely with tic phenomenology.

We sometimes get into discussions about whether something is “Tourettic OCD” or compulsive tics, and it can be hard to differentiate. Trying to disentangle those features can really drive treatment decision-making because the mistake would be focusing on something that isn't the primary source of disability.

I often ask patients and families to prioritize. Once we identify that there are tics, OCD, ADHD, or other issues going on, I ask which ones are the most important to tackle first. The challenge is we don't have a single therapeutic approach that covers everything. If tics are the issue, we have tic medications. If OCD is the issue, we treat that differently. ADHD has its own treatment approaches as well.

All of these features feed back into each other. When OCD is worse, the tics may worsen. When the tics worsen, OCD may worsen. It can be difficult to disentangle, and we often have to target symptoms from multiple angles.

What are some of the biggest misconceptions about Tourette syndrome that you still encounter today?

I think one of the biggest misconceptions comes from media and television portrayals of Tourette syndrome. We've seen TV shows and representations that focus heavily on things like coprolalia, swearing, or inappropriate comments. When people hear the word Tourette syndrome, that's often what comes to mind.

The reality is that while coprolalia can happen, it's not the majority experience for patients with Tourette syndrome. When it does happen, it can be extremely disabling and disruptive, but it's not representative of most individuals living with the condition.

I also think the stigma associated with Tourette syndrome remains significant. Even in the absence of coprolalia, these are individuals whose movements or vocalizations call attention to them. Many people with tic disorders are actively trying to suppress or mask their symptoms.

There's often a misconception that the symptoms are voluntary or fully under somebody's control. To a certain extent there are control features, but fundamentally these are involuntary occurrences. People are often trying very hard to suppress them, and that continues to be a major misunderstanding.

Another misconception is that people with Tourette syndrome are intellectually impaired. That's not borne out by the evidence. Many individuals with Tourette syndrome can achieve and function very well, especially if they're given the right diagnosis, support, and treatment approaches.

What are some of the major unmet needs that still exist in Tourette syndrome care?

I do think we have some promising therapeutics in the pipeline, including one in particular that hopefully may become available next year. That remains a major unmet need: better pharmacologic management of tics and Tourette syndrome.

We focus a lot on the tics, and when we talk about FDA-approved medications, we're generally talking about therapies specifically for the tics. But there isn't a comprehensive treatment that addresses all the different manifestations of Tourette syndrome and its comorbidities at once.

Some of the currently available medications are better for milder symptoms, while others are necessary for individuals with more severe manifestations. We often end up engaging in polypharmacy, which can be challenging, and patients or families are understandably concerned about side effects, particularly with dopamine receptor-blocking medications.

I think beyond new therapeutics, we also need to better understand how to use these medications effectively. Adolescents, for example, may have challenges with adherence, and sometimes medications aren't working simply because they're not being taken consistently.

We also still need better recognition and measurement of comorbidities, understanding where disability is coming from, and making sure we're targeting the right symptoms.

How do you view the role of neuromodulation and broader community awareness moving forward?

I'm a big proponent of neuromodulation. I run a neuromodulation program, and I've been fascinated by some of the effects we've seen with deep brain stimulation in individuals with tic disorders.

That being said, it's still experimental. It's not something we would offer broadly to everybody, and there are only certain individuals who would qualify for that approach. But I think what we learn from neuromodulation helps us better understand the disorder itself. It helps us understand which networks are dysfunctional and which may require modulation.

I also think we need to continue improving community education and reducing stigma. Awareness and understanding are really important because these individuals often need support systems that can recognize the challenges they're facing.

Therapies like Comprehensive Behavioral Intervention for Tics can be very effective, but access remains difficult because there simply aren't enough trained providers. Beyond that, patients often struggle to find psychologists or therapists who truly understand tic disorders and their comorbidities.

Overall, I think we need both broader public education and more clinical community education surrounding tic disorders and Tourette syndrome.

Transcript was edited for clarity. Click here for more iterations of NeuroVoices.