“I’m not being rude, I’d want somebody normal”: Adolescents’ Perception of their Peers with Tourette’s Syndrome: an Exploratory Study

Abstract

Tourette’s syndrome (TS) is a highly stigmatised condition, and typically developing adolescents’ motives and reasons for excluding individuals with TS have not been examined. The aim of the study was to understand how TS is conceptualised by adolescents and explore how individuals with TS are perceived by their typically developing peers. Free text writing and focus groups were used to elicit the views of twenty-two year ten students from a secondary school in South East England. Grounded theory was used to develop an analytical framework. Participants’ understanding about the condition was construed from misconceptions, unfamiliarity and unanswered questions. Adolescents who conceived TS as a condition beyond the individual’s control perceived their peers as being deprived of agency and strength and as straying from the boundaries of normalcy. People with TS were viewed as individuals deserving pity, and in need of support. Although participants maintained they had feelings of social politeness towards those with TS, they would avoid initiating meaningful social relationships with them due to fear of ‘social contamination’. Intergroup anxiety would also inhibit a close degree of social contact. Participants that viewed those with TS as responsible for their condition expressed a plenary desire for social distance. However, these behavioural intentions were not limited to adolescents that elicited inferences of responsibility to people with TS, indicating that attributional models of stigmatisation may be of secondary importance in the case of TS. Implications for interventions to improve school belonging among youth with TS are discussed.

“Tourette’s Is a Lonely Place”: an Interpretative Phenomenological Analysis of the Personal Experience and Identity of Adults with Tourette’s Syndrome

“…The wider literature suggests that the complexity of TS extends beyond the physical symptoms. Social adjustment difficulties (Cutler et al 2009), social-and self-stigmatisation (Malli et al 2016;Smith et al 2015), isolation, bullying, peer rejection (Malli and Forrester-Jones 2017;Wadman et al 2013) and poor sense of self-concept due to personalisation of the illness (Hanks et al 2016) are some of the hurdles experienced by children and adolescents affected by TS.…”

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

“…When it has centered on the social experiences of those with TS, typically, the data collected are reported by parents or caregivers rather than by the person with TS (e.g., Conelea et al, 2011 ); this focus on parental perspectives is typical for research about disability in family contexts (Canary, 2008 ). Several studies have investigated the ways in which children and adolescents with tics are perceived by others, generally concluding that children with tics are perceived as less socially acceptable, are less-desirable playmates, and are more likely to be avoided when others seek out meaningful social relationships (Friedrich et al, 1996 ; Holtz & Tessman, 2007 ; Malli & Forrester- Jones, 2017 ; Woods et al, 1999 ).…”

Living with tics: Nursing care of pediatric Tourette syndrome

“…While tics can be suppressed temporarily, their unexpected nature and waxing and waning in daily life affect the social interactions of youths with TS adversely. A patient's uncommon or inappropriate tics, as well as the potential social stigma and pitifulness would make them feel abnormal [ 12 , 38 , [47] , [48] , [49] , [50] ]. Both Eastern and Western societies in general still misinterpret and ostracize those with TS.…”

“…Based upon others' unfriendly responses, youths with TS become aware that most people do not accept their physical appearance. Thus, to conform to social expectations as a normal person on the exterior, they choose to suppress their tics when in public or when interacting with strangers, and thereby avoid drawing unnecessary attention to themselves [ 11 , 49 , 50 ]. Youths with TS perceive that the misperceptions of TS on the part of teachers, peers, or the general public result in stigmatization, social maladjustment, and discrimination [ 9 ].…”