In today’s post, regular contributor Clay Jones is joined by Christine Conelea, PhD. Dr. Conelea is a psychologist with research and clinical expertise is in the area of neurodevelopmental disorders, with an emphasis on Tourette Syndrome, obsessive-compulsive spectrum disorders, and anxiety disorders. Her full bio can be found at the end of the post.
Over the past year and a half, a seemingly-new medical phenomenon has emerged involving large numbers of mostly adolescent females presenting with unusual movements and vocal outbursts. There have been papers published in the medical literature discussing this phenomenon, though no actual scientific analysis, and now articles written for the public by journalists. The titles and headlines have grabbed the attention of many armchair neurologists and psychiatrists because this phenomenon involves a combination of entities that tend to engender a strong emotional response: TikTok, Tourette syndrome (TS), and kids these days. And to be frank, the fact that the kids I’m referring to are largely female also very likely plays an unfortunate role in how this phenomenon is being interpreted.
Though it wasn’t the first, and certainly won’t be the last, an article published in The Wall Street Journal last week is a prime example of how the emergence of a seemingly sudden-onset movement disorder in a number of young girls, and a few boys, is being presented to the public by the lay media. There is an assumption, based on the experience of a few experts in relevant fields, that these patients have what is known as a functional neurological disorder (FND) rather than TS. Furthermore, they claim that the ultimate etiology is stress brought on by the coronavirus pandemic.
In our post today, Dr. Conelea and I will explore this phenomenon in the context of the assumption that FND plays a role, but with a bit of deserved skepticism. Our concern is that jumping to conclusions might be based on a limited understanding of how Tourette Syndrome presents in different patient populations, in particular adolescent girls. Even more worrisome to us is the potential for harm caused by the confusing way the media is covering this issue.
This article is a collaborative effort, but Dr. Conelea is the true expert here and the driving force behind this post. Going forward, I will designate when I’m taking the lead and writing from my informed individual perspective in order to avoid any potential confusion when singular first person pronouns make an appearance. Here we go!
Tourette Syndrome is not “just tics”
A common misconception about TS is that it’s “just tics”: involuntary, sudden, rapid, recurrent movements or vocalizations. This likely stems from the one dimensional and often offensively inaccurate depiction of the condition in movies but also from the simple fact that tics are the component of the condition that are easily seen or heard. Medical professionals also often rely on deceptively simple criteria to diagnose TS, which require motor and vocal tics that begin prior to age 18 years and last for at least a year. Formal diagnosis, however, is a lot more tricky.
There is no identifiable biomarker or “lab test” for TS, so diagnosis relies on clinician experience and judgement in order to properly identify tics, distinguish them from other abnormal movements, and rule out other medical or psychiatric etiologies. This naturally requires a patient (or parent) to accurately recall a symptom history and to describe “invisible” experiences such as tic urges or sensory issues. TS is classified as a syndrome because tics are rarely the only symptoms–around 80% of people with TS have other neurodevelopmental and psychiatric disorders. Common challenges include motor hyperactivity, inattention, compulsive behaviors, impulse control difficulty, and anxiety. High co-occurrence with disorders involving motor abnormalities (e.g., ADHD, OCD, autism) arises from overlapping genetic and neural mechanisms, while psychiatric symptoms such as depression and anxiety can result from the psychosocial consequences of living with tics. Taken together, a lot of complexity is at play when determining a TS diagnosis.
Clinicians and patients are prone to all the cognitive biases that come with being human, meaning that potential confounders lurk at every step of TS diagnosis. Studies have shown, for example, that there are discrepancies between self-report of tic severity and tics measured via video-recordings. Kids’ self-reported ability to suppress tics also poorly correlates with their observed ability to do so, and people who had tics as children are not always accurate reporters of tic absence in adulthood.
It’s particularly difficult to notice subtle or mild tics, especially retrospectively and in early childhood, when tics are often misattributed to other causes (“they blinked and sniffed a lot because of allergies”). Tics naturally fluctuate and change over time. We also know that tics seen in a clinical exam typically differ from those patients experience in daily life. This is because tics are reactive to context: observation, activities, emotions, cognitive activity, wakefulness, tic-related feedback, and even different physical settings can all impact how tics are expressed.
This fascinating aspect of TS is one of the many reasons why promoters of bogus therapies often target this condition, and why some well-meaning providers, parents, and even patients themselves might believe that these interventions are helping. Someone with TS, even an avowed skeptic (cough cough) who is fully aware of the data showing that they might not make accurate assessments of their own tic severity, might have a hard time wrapping their head around this. But when you consider the many placebo effects that might also play a role in establishing a false perception of reality, it makes a lot more sense.
The “classic” Tourette presentation
In the face of diagnostic ambiguities, it becomes easy to fall back on the heuristic of the “classic patient” to rule the diagnosis in or out. The generally accepted “classic TS patient” has several characteristics. First, he is male, because TS has been estimated to skew male at a 4:1 ratio. Second, the tics start around ages 4-6 years, peak in the tween years of 10-12, and lessen in late adolescence. Within this course, there’s lots of waxing and waning of tics and changes in the types of tics experienced. Third, the tics start out simple and mild – brief movements of the eyes and face (e.g., eye blinking, nose scrunching) – followed by gradual progression to peripheral motor tics, vocal tics, and sometimes complex tics (more purposeful or orchestrated movements or speech patterns). Finally, the tics will be voluntarily suppressible, even if just for a brief time, and likely preceded by an urge sensation.
Clay’s personal journey with Tourette syndrome
Long time readers of SBM may know that I have Tourette syndrome. And for any newer readers…I have Tourette syndrome. I’ve written a few posts on the subject in the past, gave a talk at NECSS, and spoke about my experience on this excellent podcast.
The classic clinical course described above is exactly how my tics presented when I was a young child. I began blinking and grimacing in early elementary school. This was followed by throat clearing and soft grunting and I was officially diagnosed in the third grade by a pediatric neurologist. My tics were at their worst, and most socially distressing, in middle school and then improved, or at least they became less bothersome, in high school.
I definitely have periods where my tics seem worse, and are more disruptive. A couple of years ago, for one rather memorable example, I suffered a rotator cuff tear caused by a bout of left arm jerking. For the most part, however, my tics have been stable since later adolescence and though I am never not aware of them, they rarely cause me any distress. I am also lucky to be one of the small percentage of people with TS who have no comorbid neuropsychiatric conditions.
Thanks for listening.
So what happens when someone isn’t the “classic case”?
(All future use of singular first-person pronouns are Christine speaking to her personal experience.)
This question is currently front and center for TS specialists around the world. In March 2021, my email network of TS colleagues started case consultation chatter: “Are you also seeing more teen girls with recent onset tics that are really complex? How are you handling diagnosis and treatment? What’s working?” In other words, “Are you seeing people who don’t have classic TS?” Rather quickly, a social media connection started to be suggested. “Did you know that teens on TikTok with millions of followers are posting videos of their tics? Did you know #tourette has been viewed billions of times? Have you noticed your patients doing some of the tics that are really popular in these videos?”
Though there wasn’t more than clinical observation to guide our discussions, there did seem to be notable commonalities across observations: a female preponderance, older age of first identified symptoms, quite complex involuntary behaviors, significant functional impairment, co-occurring anxiety, depression, or OCD, and–yes–specific tics that were common across patients and similar to those circulating on social media. Most patients with this profile were really struggling, many showing up to an emergency department.
There was a sentiment among the TS clinical research community that the phenomenon would need empirical examination but deserved early acknowledgement and clinical guidance. A group of us in the US published an academic journal editorial, and similar reports came out of groups in Canada and Europe. A central premise of these papers was that some of these patients may have a functional movement disorder, a subset of functional neurological disorder (FND), which indicates symptoms are incompatible with a recognized neurological or medical condition. The diagnostic distinction was relevant to treatment: we were worried about kids being inappropriately medicated for tics. Existing evidence supports cognitive behavioral therapy as the first-line intervention for both TS and FND.
The social media connection
If you look at our paper, you’ll see the paragraph about TikTok. I wrote that part, based on converging evidence showing that tics are very suggestible, tics can increase when they are attended to, repetition of a behavior can turn into a tic (lots of patients develop sniffing/coughing tics after a respiratory illness because the behavior becomes habitualized), and tic echophenomena/mimicking is extremely common in TS. Clinicians are often taught to look for mimicking as part of a diagnostic evaluation: “Do some sniffs and movements and if the patient mimics you it’s a positive sign it’s TS”. The neural substrates of tic echophenomena reflect overactivity of the brain’s supplementary motor area observed in TS. (Interesting side note – one study suggests you can actually induce tic-like movements and echophenomena in people without tics by increasing activation in their supplementary motor area with noninvasive brain stimulation and then having them watch videos of others ticcing).
Based on the literature, it made sense that video depiction of TS at a global scale could contribute to the tics we’d see in the clinic. It also made sense that the psychosocial stressors of the COVID-19 pandemic would lead young people to gravitate toward social media for support and self-understanding and that overall mental health would worsen for many. Social media and the pandemic were contextual factors that set up the perfect storm for this phenomenon. In drawing these connections, I didn’t think too hard about how the public and media might run with the message.
But then a few things happened. First, I had a conversation with Ben Brown, the creator and host of “Tourette’s Podcast“. He was getting critical feedback from listeners after an episode with researchers who discussed what’s become referred to as “TikTok tics.” Listeners were skeptical–how can TS researchers be so confident about causality, i.e., that social media was causing FND? Don’t some of these symptoms just reflect what we know TS to be? What if there is something getting missed about females with TS, just like we saw happen in autism? Females with TS I met on Twitter began reaching out to me directly, sharing their stories and similar concerns. Next, a review paper about sex differences in TS was published and concluded that females, compared to males, have peak tics at a later age, less remission with age, worse tic impairment, and more anxiety and depression–notably, many of the characteristics being invoked to support a diagnosis of FND over TS.
Then came a paper published by a research group in Germany claiming that specific social media influencers were “virtual index cases” of a “mass social media-induced illness” characterized by “functional ‘Tourette-like’ symptoms.” Without clear empirical evidence, they asserted an unfalsifiable causal claim that this phenomenon is a “21th [sic] century expression of a culture bound stress reaction of our post-modern society emphasizing the uniqueness of individuals and valuing their alleged exceptionality, thus promoting attention-seeking behaviours and aggravating the permanent identity crisis of modern man”. The paper is riddled with ethical and scientific concerns that I have detailed elsewhere in collaboration with other concerned experts.
The paper sparked a flurry of hyperbolic headlines in the popular press and, ironically, self-proclaimed experts on social media used it to reify the narrative that “teen girls are faking tics for attention on social media”. The story was just plain catchy: it played into sexist and ageist tropes about teen girls, adult panic about new technology popular with kids these days, and ableist framing of mental illness as a theatrical ploy for attention.
The complicated story that didn’t go viral
This is an extremely complex issue with, in our opinion, no clear answer except that we should avoid jumping to conclusions and we should all, definitely, eliminate the word “faking” from any conversations about this. In the short term, each person presenting with apparent new tics should be treated individually and without bias. In the longer term, more research is needed to guide diagnosis and treatment of these patients.
Critically, these patients have been lumped together in the press but are actually a heterogeneous group. Some are patients that do have FND. While not what we would consider to be a common condition, it certainly isn’t rare. For example, Clay has seen adolescent patients who developed new onset seizure-like activity that were found to have normal testing that ruled out true seizures. These non-epileptic seizures, a form of functional neurological disorder, are sometimes referred to as pseudoseizures or psychogenic seizures and are a physical manifestation of anxiety that serve as a sort of maladaptive coping mechanism. This can stem from a severe acute event, such as a sexual assault, or occur as the result of chronic stress and anxiety, sometimes with a seemingly minor insult serving as a tipping point.
Some are patients with TS. Their tics may be newly recognized (it finally got bad enough to be noticed) or exacerbated by pandemic-related stress and social media consumption. We are seeing patients with long-standing TS diagnoses who have “picked up” tics popularly depicted on social media, which again is not surprising given that echophenomena is a known aspect of TS. It’s another reason we should be careful to not assume a tic isn’t “real” just because it’s depicted on TikTok.
Some are patients with both TS and FND, because they can co-occur. In a similar fashion, it is not uncommon for patients with epilepsy, a potential source of significant anxiety, to also develop psychogenic seizures. Although it’s tempting to think categorically, neuropsychiatric phenomena reflect a number of dimensional cognitive processes that collectively drive behavior. Thoughtful studies on this new clinical issue may not only help patients but also answer fundamental questions about the how the brain, behavior, and social systems interact to impact motor learning and our internal sense of agency over our bodies.
Finally, some patients may represent less-understood presentations of TS that deserve more awareness and study. This phenomenon offers an impetus to step back and question the “classic TS patient” heuristic, to say, what is the quality of the evidence upon which this heuristic is based? Who were the research participants and patients that informed the heuristic? Who is underrepresented in these samples? Most TS studies are based on predominantly young, male, White, affluent, treatment-seeking samples. Most of us TS experts like to assume our patients represent the population writ large, but there are a host of factors that may bias who is identified to have tics and who ends up seen in specialty care. There is evidence to suggest that as many as half of pediatric TS cases remain undiagnosed, and that under-recognition is even higher among Hispanic and Black non-Hispanic children. Stepping back to question what we “know” about a patient group takes a lot of vulnerability, but it’s also critical for moving TS science forward.
Conclusion: it’s too early to make conclusions
Putting on our clinician hats, we feel the sense of urgency that comes with a new medical phenomenon that is derailing the lives of many young people. COVID-19 has also emotionally primed us all to be more anxious and hypervigilant for the “next epidemic” lurking around the corner. It is imperative to acknowledge these feelings but to not act or react from them in the clinic or in clinical science.
If anything, COVID-19 has been an important reminder that not all clinical, expert, armchair expert, and media-reported observations show validity upon experimentation, and that promoting quick conclusions can end up causing harm. There are already anecdotal reports of patients with TS being labelled as faking (sadly not a new problem in this community) and having increased difficulty with social interactions as a result of the recent media coverage. It also reminds us that we can do rigorous science to address urgent patient needs. So for now, let’s get those studies done and try our best to ensure that all kids who are struggling right now, with tics or any other mental health symptoms, are seen, heard, and helped.