Letting Tourette's be: The importance of understanding lived experience in research and the clinic

Abstract

The most common clinical research question regarding Tourette syndrome focuses on tic reduction, which follows from classical 'lack of inhibition' models. Rooted in views about brain deficits, this model suggests that with higher severity and frequency, tics are necessarily disruptive and should therefore be inhibited. However, emerging calls from people with lived experience of Tourette syndrome suggest that this is too narrow a definition. This narrative literature review analyses issues with brain deficit views and qualitative research on tic context and feelings of compulsion. The results suggest the need for a more positive and encompassing theoretical and ethical position on Tourette's. The article puts forward an enactive analytical approach of 'letting be', that is, approaching a phenomenon without forcing preconceived reference structures onto it. We suggest using the identity-first term 'Tourettic'. Prioritizing the perspective of the 'Tourettic patient', it urges attentiveness to the everyday issues diagnosed people encounter and how these are embedded in further life. This approach highlights the strong relationship between the Tourettic persons' felt impairment, their adoption of an outsider's perspective, and feeling under constant scrutiny. It suggests that this felt impairment of tics can be reduced by creating a physical and social environment in which the person is 'let be' but not 'let go of'. WHAT THIS PAPER ADDS: Its theoretical position allows a more holistic view of Tourette's, integrating tics with oft-overlooked complex compulsions. The 'letting be' position also allows us to view why the presentation of Tourette's is likely to vary with gender and age of onset. 'Letting be' is a promising approach to improve a clinical understanding of Tourettic well-being over and above tic severity and frequency. It integrates quantitative research on Tourette syndrome in the neurosciences with qualitative neurodiversity literature in the medical humanities. It integrates ethical frameworks as developed in enactive philosophy with the conceptualization and treatment of tics and compulsions.