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

Jo Bervoets Orcid Logo, Diana Beljaars, Hanne De Jaegher Orcid Logo

Developmental Medicine and Child Neurology, Volume: 65, Issue: 11, Pages: 1422 - 1428

Swansea University Author: Diana Beljaars

  • Bervoets Beljaars De Jaegher (2023) Letting Tourette s be (DMCN) published version.pdf

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DOI (Published version): 10.1111/dmcn.15545

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 the...

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Published in: Developmental Medicine and Child Neurology
ISSN: 0012-1622 1469-8749
Published: Wiley 2023
Online Access: Check full text

URI: https://cronfa.swan.ac.uk/Record/cronfa62639
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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’.
Item Description: Tourette syndrome, Tourette's, Tourettic, neurodiversity
College: Faculty of Science and Engineering
Funders: H2020 European Research Council. Grant Number: 804881
Issue: 11
Start Page: 1422
End Page: 1428