A call for caution: ‘stop that’ sentiments threaten tic research, healthcare and advocacy
This publication is included in the Autistic Autism Scholarship Project. one author of this publication is identified as autistic in the project.
About the autistic author markerConelea, C. A., Bervoets, J., Bethan Davies, E., Varner, K., Malli, M., Jones, D. P., Beljaars, D., Nash, B., & Capriotti, M. R. (2022). A call for caution: ‘stop that’ sentiments threaten tic research, healthcare and advocacy. Brain, 145(4), e18-e20. https://doi.org/10.1093/brain/awac028
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Authors
Abstract
Recent reports from Tourette syndrome clinical researchers in North America and Europe1,2 describe a recent increase in young patients presenting to Tourette syndrome clinics. Reported commonalities in clinical presentation include a female preponderance, older age of first detected symptoms, complex behaviours (e.g. phrases, coprolalia, long/sequenced movements), significant functional impairment, and similarities to behaviours recorded in videos on social media platforms, notably TikTok. This has raised important questions about aetiology and how to best diagnose and treat these individuals. In their recent Brain paper, Müller-Vahl et al.3 postulated that this phenomenon is a ‘mass sociogenic illness.’ The function of this assertion could be to caution clinicians and patients against using interventions contraindicated for those with functional movement disorder (FMD). However, this postulate does not follow neatly from the current state of the evidence, and the rhetorical language used risks negatively impacting patients by implying that these symptoms are ‘attention seeking’ behaviours. In this response, written by a group of Tourette syndrome researchers, clinicians, and individuals with tics, we detail concerns with the paper. First, Müller-Vahl and colleagues’ argument raises several scientific concerns.3 A preponderance of claims are made without supporting evidence that presumably should be available (e.g. rates of phenomena observed before and during the pandemic). The claims that ‘most individuals [on social media who experience tics] had functional symptoms only resembling Tourette syndrome’ and that ‘experts can easily tell the difference [between Tourette syndrome and FMD]’ are substantiated with citations to non-data-based commentary and newspaper interviews rather than empirical studies. One key assertion by the authors is that ‘functional tics’ clearly differ from Tourette syndrome tics. The risk in claiming there is a clear categorical distinction between these types of movements is that patients who do not have ‘modal Tourette syndrome presentations’ will be erroneously categorized as ‘not Tourette syndrome’. Literature on differential diagnosis of Tourette syndrome versus FMD emphasizes that clinical distinction is prone to error due to symptom overlap and common coexistence of both types of movement within individuals, such that these conditions are not orthogonal.4 Indeed, at least some of these patients have a confirmed prior history of tics.2 Contemporary models of neuropsychiatric phenomena based on neuroscience principles also caution against the limitations of blunt categorization, given that observable behaviour is driven by a number of dimensional systems (e.g. cognitive, sensorimotor, perceptual) that are influenced by dimensional contexts (e.g. genetic, biological, neurodevelopmental, environmental, social). It is therefore prudent to view these patients as a heterogeneous group. Finally, many characteristics cited as evidence of ‘functional presentation’ are also known characteristics of Tourette syndrome tics, such as wide topographical variation, high susceptibility to echoing/mimicking and the influence of feedback, contextual variability, stress and observational reactivity, significant co-occurrence with psychiatric illness, and variable tic suppressibility and premonitory urge experience across individuals. Gender distribution of patients, particularly higher female prevalence than is expected given the observed male preponderance of Tourette syndrome, has been cited here and elsewhere2 as further evidence of functional tics. We are concerned about the implication that greater female preponderance is in itself indicative of functional tics, a conclusion that echoes historical patterns of neurological illness in females being readily attributed to ‘hysteria’. The risks of this framing are that it may introduce (or reinforce existing) gender-related biases toward female patients and deter research on sex and gender differences in Tourette syndrome. Research on other neurodevelopmental disorders, such as ADHD and autism, shows that sex and gender differences in symptoms have resulted in under- or misdiagnosis in females. It is possible a similar effect plays a role in our current understanding of Tourette syndrome—because Tourette syndrome research is based on predominantly male samples, the presumed ‘classic presentation’ may be biased toward describing male traits. Evidence shows that Tourette syndrome tics in females are more likely to be complex, onset at an older age, carry greater functional impact, and worsen with age, and that females with Tourette syndrome are more likely to have co-occurring mood and anxiety disorders,5 all traits that have been invoked to support an FMD diagnosis in recent papers. The paper implies that symptom course is a distinguishing feature for FMD, yet Tourette syndrome symptom course is highly variable. Tic onset can occur in adolescence. Early tics, particularly simple tics, can go unnoticed or be attributed to other causes (e.g. attributing throat clearing tics to allergies), making it difficult to draw conclusions about age of onset and individual or family history. There is often a discrepancy between patient-reported and direct observation of tics, especially for milder symptoms. Thus, there is a strong possibility that patients with positive tic history are being undercounted in reports like the Müller-Vahl et al.3 paper. Finally, the ‘waxing and waning’ pattern of tic severity, noted to be indicative of Tourette syndrome, has only been evaluated in one study on the scale of seconds to minutes.6 Though considered a ‘clinical truth,’ there is no evidence to suggest that a certain degree of waxing/waning distinguishes tics from other movements.
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Isobel Heyman , Holan Liang , Tammy Hedderly (2021). COVID-19 related increase in childhood tics and tic-like attacks . Archives of Disease in Childhood, 106(5), 420-421. BMJ.Crossref OpenAlex OpenCitations
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Tamara Pringsheim , Davide Martino (2021). Rapid onset of functional tic‐like behaviours in young adults during the COVID‐19 pandemic . European Journal of Neurology, 28(11), 3805-3808. Wiley.Crossref OpenAlex OpenCitations
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Kirsten R Müller-Vahl , Anna Pisarenko , Ewgeni Jakubovski , Carolin Fremer (2022). Stop that! It’s not Tourette’s but a new type of mass sociogenic illness . Brain, 145(2), 476-480. Oxford University Press (OUP).Crossref OpenAlex OpenCitations
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Sherry Pagoto , Molly E Waring , Ran Xu (2019). A Call for a Public Health Agenda for Social Media Research . Journal of Medical Internet Research, 21(12), e16661. JMIR Publications Inc..Crossref OpenAlex OpenCitations
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Jordan Garris , Mark Quigg (2021). The female Tourette patient: Sex differences in Tourette Disorder . Neuroscience & Biobehavioral Reviews, 129, 261-268. Elsevier BV.Crossref OpenAlex OpenCitations
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Victoria Perkins , Neil S Coulson , E. Bethan Davies (2020). Using Online Support Communities for Tourette Syndrome and Tic Disorders: Online Survey of Users’ Experiences . Journal of Medical Internet Research, 22(11), e18099. JMIR Publications Inc..Crossref OpenAlex OpenCitations
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Amy Orben (2020). The Sisyphean Cycle of Technology Panics . Perspectives on Psychological Science, 15(5), 1143-1157. SAGE Publications.Crossref OpenAlex OpenCitations
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Jo Bervoets *Autistic author. Learn more… , Kristien Hens (2020). Going Beyond the Catch-22 of Autism Diagnosis and Research. The Moral Implications of (Not) Asking “What Is Autism?” . Frontiers in Psychology, 11, 529193. Frontiers Media SA.