Tourettic Research of Tourette Syndrome: Some Reflections

Tourette syndrome (TS) research is largely conducted by non-Tourettic stakeholders from a clinical and medical or external perspective. Reasons for this may include the ableist structures that exist for disabled and neurodivergent folk within academia. This article reflects on the authors’ experiences of conducting research into TS as two early career researchers who have a confirmed diagnosis of TS themselves. The article maps our experiences through TS research, categorising experiences relating to representation , additional labour , and some specific reflections on data collection . In highlighting our distinct experiences, we hope to encourage more consideration of the embodied intricacies of conducting this kind of research as Tourettic researchers, and to encourage further discussions relating to access and inclusion in TS research spaces.

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Institutions

Publication Details

Journal
Neurodiversity
Published
2025-03-28
DOI
https://doi.org/10.1177/27546330251328489
Citations
4
Primary Topic
Obsessive-Compulsive Spectrum Disorders
Type
article
Field-Weighted Citation Impact
9.23

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article

Tourettic Research of Tourette Syndrome: Some Reflections

Daniel P. Jones, Danni Phoenix-Kane
4 citations
Neurodiversity
Obsessive-Compulsive Spectrum Disorders
9.23
article

Tourettic Research of Tourette Syndrome: Some Reflections

Daniel P. Jones, Danni Phoenix-Kane
article en
4 citations

Abstract

Tourette syndrome (TS) research is largely conducted by non-Tourettic stakeholders from a clinical and medical or external perspective. Reasons for this may include the ableist structures that exist for disabled and neurodivergent folk within academia. This article reflects on the authors’ experiences of conducting research into TS as two early career researchers who have a confirmed diagnosis of TS themselves. The article maps our experiences through TS research, categorising experiences relating to representation , additional labour , and some specific reflections on data collection . In highlighting our distinct experiences, we hope to encourage more consideration of the embodied intricacies of conducting this kind of research as Tourettic researchers, and to encourage further discussions relating to access and inclusion in TS research spaces.

NeurodiversityVol. 3
University of Hertfordshire (GB), University of Sheffield (GB)
Economic and Social Research Council
Openalex Percentile: Top 2%
Obsessive-Compulsive Spectrum Disorders
9.23
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