Stigma and Adults with Tourette’s Syndrome: “Never Laugh at Other People’s Disabilities, Unless they have Tourette’s—Because How Can You Not?”

Abstract

Tourette’s syndrome (TS) is a condition that has been stigmatised and mocked in contemporary society, yet little is known about the subjective experience of those directly affected by it. Guided by Public and Patient Involvement (PPI) a mixed method design was used for this study to explore the experience of stigma in adults living with TS in the UK. A total of one hundred and ninety-nine adults participated in a cross-sectional online survey using an adapted version of the Discrimination and Stigma Scale (DISC-12) and the Perceived Quality of Life (PQoL) scale, twenty of whom were also interviewed using a semi-structured interview schedule. Quantitative findings indicated that participants experienced discrimination in numerous life domains; most prominently in education (75.4%), social life (71.4%), public transport (60.8%) and employment (54.3.%). The PQoL of adults with Tourette’s was found to be negatively correlated with both Enacted and Anticipated Discrimination from the DISC-12 scale. Qualitative findings illustrated the pervasive nature of TS stigma, which expanded beyond micro-interactions, and which could be observed at a structural level. The peculiar impact of disparagement humour in the construction and promulgation of “othering” individuals with TS was also highlighted. Concealment and self-stigma were mechanisms commonly utilised by individuals to manage their “spoiled identity”, inhibiting active and collective responses to stigmatisation. The study highlights how TS stigma acts as a barrier to social and economic participation for adults with the condition and helps identify factors that need to be considered when developing anti-stigma strategies.

“Sorry, I Didn’t Mean to Kiss at You”: A Descriptive Analysis of Tourette Syndrome in Interpersonal Interactions

“…The experience of being bullied for having TS is reported commonly in extant literature (e.g., Malli et al, 2021;Smith et al, 2015). Our findings parallel past studies, as participants reported experiencing bullying primarily in childhood, with an occasional mention of its presence in adulthood.…”

“…In two additional studies, one that involved interviewing 16 adults with TS (Malli et al, 2019) and the other performing a mixed-methods approach including a survey of 199 adults and interviews with 20 (Malli & Forrester-Jones, 2021), researchers examined the "social and personal cost of living with TS during adulthood" (Malli et al, 2019, p. 819). Their participants reported several social challenges including rejection, marginalization, victimization, the trivialization of TS through humor, prolonged and intrusive staring, and being asked to leave public places (Malli et al, 2019;Malli & Forrester-Jones, 2021). Malli and colleagues specified 21 domains of "enacted discrimination," including in educational settings (75.4% of participants), in social life (71.4%), on public transport (60.8%) and with respect to employment (54.3%) (Malli & Forrester-Jones, 2021, p. 10).…”

“…Staring was considered present when a participant gave an account of being "stared at" explicitly, or described being looked at in uncomfortable ways on account of their tics. In their own documentation of interpersonal stigma faced by persons with TS, Malli & Forrester-Jones (2021) point out that the form of staring reported often reflects what Garland-Thomson (2009) terms the "baroque stare," which "is flagrantly stimulus driven, the rogue looking that refuses to be corralled into acceptable attention" (p. 50). The act of staring in this way functions to otherize the person with TS.…”

“…This type of unwanted attention has significant implications for persons with TS. Depending on the type of "trouble" one gets into, it could mean an impact, for example, on one's education or employment status (Malli & Forrester-Jones, 2021). This can occur without provocation, or when a person with TS "stands up for themselves" (Congdon, 2014).…”

British teachers' knowledge and awareness of Tourette syndrome in children attending mainstream school

“…Indeed, many children with TS are teased (Debes, Hjalgrim, and Skov, 2010), victimised or rejected by their peers (Packer, 2005; Storch, Merlo, Lack, et al., 2007; Zinner, Conelea, Glew, et al., 2012). Crucially, a recent study identified a staggering three‐quarters of adults with TS had experienced stigma in education settings (Malli and Forrester‐Jones, 2021). Therefore, children with TS's ability to socialise and make friends at school can be just as demanding as the academic aspects they encounter.…”