Abstract
Tourette’s syndrome (TS) is a childhood onset neurodevelopmental disorder, characterised by tics. To our knowledge, no systematic reviews exist which focus on examining the body of literature on stigma in association with children and adolescents with TS. The aim of the article is to provide a review of the existing research on (1) social stigma in relation to children and adolescents with TS, (2) self-stigma and (3) courtesy stigma in family members of youth with TS. Three electronic databases were searched: PsycINFO, PubMed and Web of Science. Seventeen empirical studies met the inclusion criteria. In relation to social stigma in rating their own beliefs and behavioural intentions, youth who did not have TS showed an unfavourable attitude towards individuals with TS in comparison to typically developing peers. Meanwhile, in their own narratives about their lives, young people with TS themselves described some form of devaluation from others as a response to their disorder. Self-degrading comments were denoted in a number of studies in which the children pointed out stereotypical views that they had adopted about themselves. Finally, as regards courtesy stigma, parents expressed guilt in relation to their children’s condition and social alienation as a result of the disorder. Surprisingly, however, there is not one study that focuses primarily on stigma in relation to TS and further studies that examine the subject from the perspective of both the ‘stigmatiser’ and the recipient of stigma are warranted.

Similar content being viewed by others
References
American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders, 5th edn. American Psychiatric Association, Washington
World Health Organization (1993) ICD-10, The International classification of diseases. Classification of mental and behavioural disorders. Diagnostic criteria for research. World Health Organization, Geneva
Jankovic J (1997) Phenomenology and classification of tics. In: Jankovic J (ed) Neurologic clinics. WB Saunders, Philadelphia, pp 267–275
Eddy CM, Cavanna AE (2013) On being your own worst enemy: an investigation of social inappropriate symptoms in Tourette syndrome. J Psychiat Res 47:1259–1263. doi:10.1016/j.jpsychires.2013.05.019
Robertson MM (2015) Tourette’s syndrome: a personal 35 year perspective on Giles de la Tourette syndrome: prevalence, phenomenology, comorbidities, and coexistent psychopathologies. Lancet Psychiatry 2:68–87. doi:10.1016/S2215-0366(14)00132-1
Eddy CM, Rizzo R, Gulisano M, Agodi A, Barchitta M, Cali P, Robertson MM, Cavanna AE (2011) Quality of life in young people with Tourette syndrome: a controlled study. J Neurol 258:291–301. doi:10.1007/s00415-010-5754-6
Mansley C (2003) Making Allowances. Personal accounts of Tourette Syndrome. The Bluecoat Press, Liverpool
Onions CT (1982) The Oxford dictionary of english etymology. Clarendon Press, Oxford
Goffman E (1963) Stigma: notes on the management of spoiled identity. Prentice Hall, Englewood Cliffs
Crocker J, Major B, Steele C (1998) Social stigma. In: Gilbert DT, Fiske ST, Lindzey G (eds) The handbook of social psychology. McGraw-Hill, Boston, pp 35–69
Link BG, Phelan JC (2001) Conceptualizing Stigma. Annu Rev Sociol 27:363–385
Fiske S (1998) Stereotypes, prejudice, and discrimination. In: Gilbert D, Fiske S, Lindzey G (eds) Handbook of social psychology, 4th edn. Oxford University Press, Oxford, pp 357–411
Hilton JL, von Hippel W (1996) Stereotypes. Annu Rev Psychol 47:237–271
Corrigan PW, Penn DL (1999) Lessons from social psychology on discrediting psychiatric stigma. Am Psychol 54:765–776
Link BG, Yang LH, Phelan JC, Collins PY (2004) Measuring mental Illness stigma. Schizophr Bull 30:511–541
Brown CS, Bigler RS (2005) Children’s perceptions of discrimination: a developmental model. Child Dev 76:533–553
Mynard M, Joseph S (2000) Development of the multidimensional peer victimization scale. Aggressive Behav 26:169–178
Corrigan PW (1998) The impact of stigma on severe mental illness. Cogn Behav Pract 5:201–222
Corrigan PW, Watson AC (2002) The paradox of self-stigma in mental illness. Clin Psychol Sci Prac 9:35–53
Muhlbauer S (2002) Navigating the storm of mental illness: phases in the family’s journey. Qual Health Res 12:1076–1092
Mak WWS, Cheung YM (2008) Affiliate stigma among caregivers of people with intellectual disability or mental illness. J Appl Res Intellect 21:532–545
Jones EE, Farina A, Hastorf AH, Markus H, Miller DT, Scott RA (1984) Social stigma. The psychology of marked relationship. Freeman, New York
Davis KK, Davis JS, Dowler L (2004) In motion, out of place: the public space(s) of Tourette syndrome. Soc Sci Med 59:103–112
Calder- Sprackman S, Sutherland S, Doja A (2014) The portrayal of Tourette syndrome in film and television. Can J Neurol Sci 41(2):226–232
Fat MJL, Sell E, Barrowman N, Doja A (2012) Public perception of tourette syndrome on youtube. J Child Neurol 27(8):1011–1016
Eddy CM, Mitchell IJ, Beck SR, Cavanna AE, Richards HE (2010) Altered attribution of intention in Tourette’s syndrome. J Neuropsychiatry Clin Neurosci 22(3):348–351
Eddy CM, Mitchell IJ, Beck SR, Cavanna AE, Richards HE (2010) Impaired comprehension of nonliteral language in tourette syndrome. Cog Behav Neurol 23(3):178–184
Eddy C.M. Cavanna AE (2015) Triangles, tricks and tics: Hyper-mentalizing in response to animated shapes in Tourette syndrome. Cortex http://dx.doi.org/10.1016/j.cortex.2015.06.003
Sirey JA, Bruce ML, Alexopoulos GS, Perlick DA, Rame P, Friedman SJ, Meyers BS (2001) Perceived stigma as a predictor of treatment discontinuation in young and older patients with depression. Am J Psychiatry 158(3):479–481
Friedrich S, Morgan SB, Devine C (1996) Children’s attitudes and behavioural intentions towards peer with Tourette’s syndrome. J Pediatr Psychol 21(3):307–319
Boudjouk PJ, Woods DM, Miltenberger RG, Long ES (2000) Negative peer evaluation in adolescents: effects of tic disorders and trichotillomania. Child Fam Behav Ther 22:17–28
Marcks BA, Woods DW, Teng EJ, Twohig MP (2004) What do those Who know, Know? investigating providers’ knowledge about Tourette’s syndrome and its treatment. Cogn Behav Pract 11:298–305
Packer LE (2005) Tic-related school problems: impact on functioning, accommodations, and interventions. Behav Modif 29:876–899
Holtz KD, Tessman GK (2007) Evaluation of peer- focused intervention to increase knowledge and foster positive attitude toward children with Tourette Syndrome. J Dev Phys Disabil 19:531–542. doi:10.1007/s10882-007-9042-z
Storch EA, Murphy TK, Chase RM, Keeley M, Goodman WK, Murray M, Geffken GR (2007) Peer victimization in youth with Tourette’s Syndrome and chronic tic disorder: relations with tic severity and internalizing symptoms. J Psychopathol Behav Assess 29(4):211–219. doi:10.1007/s10862-007-9050-4
Debes N, Hjalgrim H, Skov L (2010) The presence of attention—deficit hyperactivity disorder (ADHD) and obsessive—compulsive disorder worsen psychosocial and educational problems in tourette syndrome. J Child Neurol 25(2):171–181. doi:10.1177/0883073809336215
Conelea CA, Woods DW, Zinner SH, Budman C, Murphy T, Schahill LD, Compton SN, Walkup J (2011) “Exploring the impact of chronic tic disorders on youth: results from the Tourette syndrome impact survey. Child Psychiatry Hum Dev 42:219–242. doi:10.1007/s10578-010-0211-4
Zinner SH, Conelea CA, Glew GM, Woods DW, Budman CL (2012) Peer victimization in youth with Tourette syndrome and other chronic tic disorders. Child Psychiatry Hum Dev 43:124–136. doi:10.1007/s10578-011-0249-y
White SW, Sukhodolsky DG, Rains AL, Foster D, McGuire JF, Scahill L (2011) Elementary school teachers’ knowledge of tourette syndrome, obsessive-compulsive disorder, & attention- deficit/hyperactivity disorder: effects of teacher training. J Dev Phys Disabil 23:5–14. doi:10.1007/s10882-010-9209-x
Katona C (2013) Familiarity with and Attitudes to Tourette’s syndrome in healthcare students: a pilot comparison with epilepsy. Eur J Psychiat 27(2):129–136
Buckser A (2008) Before your very eyes: illness, Agency, and management of Tourette Syndrome. Med Anthropol Q 22(2):167–192
Buckser A (2009) Institution, agency, and Illness in the making of tourette syndrome. Hum Organ 68(3):293–305
Rivera- Navarro J, Cubo E, Almazan J (2009) The diagnosis of Tourette’s syndrome: communication and Impact. Clin Child Psychol Psychiatr 14:13–23. doi:10.1177/1359104508100127
Wadman R, Tischler V, Jackson GM (2013) Everybody just thinks I’m weird: a qualitative exploration of the psychosocial experience of adolescents with Tourette syndrome. Child Care Hlth Dev 39(6):880–886. doi:10.1111/cch.12033
Rivera- Navarro J, Cubo E, Almazan J (2014) The impact on Tourette’s syndrome in the school and the Family: perspective from three Stakeholder groups. Int J Adv Counselling 36:96–113. doi:10.1007/s10447-013-9193-9
Mathews CA, Herrera Amighetti LD, Lowe TL, van de Wetering BJM, Freimer NBF, Reus VI (2001) Cultural influences on diagnosis and perception of tourette syndrome in costa rica. J Am Acad Child Adolesc Psychiatry 40(4):456–463
Grace R, Russell C (2005) Tourettte’s Syndrome and the school experience. A qualitative study of children’s and parents’ perspectives. Australasian J Spec Education 29:40–59
Cutler D, Murphy T, Gilmour J, Heyman I (2009) The quality of life of young people with Tourette syndrome. Child Care Hlth Dev 35(4):496–504. doi:10.1111/j.1365-2214.2009.00983.x
Thomas J, Harden A (2008) Methods for thematic synthesis of qualitative research in systematic reviews. BMC Med Res Methodol. doi:10.1186/1471-2288-8-45
Law GU, Sinclair S, Fraser N (2007) Children’s attitudes and behavioural intentions towards a peer with symptoms of ADHD: does the addition of a diagnostic label make a difference? J Child health care 11:98–111
Swaim KF, Morgan SB (2001) Children’s attitudes and behavioural intentions towards a peer with autistic behaviors: does a brief educational intervention have an effect? J Autism Dev Disord 31:195–205
Bell SK, Morgan SB (2000) Children’s attitudes and Behavioural intentions towards a peer presented as obese: does a medical explanation for the obesity make a difference? J Pediatr Psychol 25(3):137–145
Smith P, Cowie H, Olafsson R, Liefooghe A (2002) Definitions of bullying: a comparison of terms used, and age and gender differences, in a fourteen-country international comparison. Child Dev 7:1119–1133
Bryman A (2012) Social Research Methods, 4th edn. Oxford University Press, Oxford
Solberg PE, Olweus D (2003) Prevalence estimation of school bullying with the Olweus bully/victim questionnaire. Aggressive Behav 29:239–268. doi:10.1002/ab.10047
Solberg PE, Olweus D (2003) Prevalence estimation of school bullying with the Olweus bully/victim questionnaire. Aggressive Behav 29:239–268. doi:10.1002/ab.10047
Teh JL, King D, Watson B, Liu S (2014) Self-stigma, anticipated stigma, and help-seeking communication in people with mental illness. PORTAL J Multidiscip Int Stud 11:1–18
Elstner K, Selai CE, Trmble MR, Robertson MM (2001) Quality of Life (QOL) of patients with Gilles de la Tourette’s syndrome. Acta Psychiatr Scand 103:52–59
Conelea CA, Busch AM, Catanzaro MA, Budman CL (2014) Tic-related activity restriction as a predictor of emotional functioning and quality of life. Compr Psychiat 55:123–129. doi:10.1016/j.comppsych.2013.06.009
Sartorius N (2008) The WPA Global programme against stigma discrimination because of schizophrenia. In: Arbleda-Florez J, Sartorius N (eds) understanding the stigma of mental illness: theory and interventions. Wiley, West Sussex, pp 37–48
Mashiach-Eizenberg M, Hasson-Ohayon I, Yanos PT, Lysaker PH, Roe D (2013) Internalized stigma and quality of life among persons with severe mental illness: The mediating roles of self-esteem and hope. Psychiatr Res 208:15–20. doi:10.1016/j.psychres.2013.03.013
Murthy RS (2002) Stigma is universal but experiences are local. World psychiatry 1(21):28
Carter AS, O’Donnell DA, Schultz RT, Schahill L, Leckman L, Pauls D (2000) Social and emotional adjustment in children affected with Gilles de la Tourette’s syndrome: associations with ADHD and family functioning. J Child Psychol Psychiat 41(2):215–223
Abraham C, Gregory N, Wolf L, Pemberton R (2002) Self-esteem, stigma and community participation amongst people with learning difficulties living in the community. J Commun Appl Soc Psychol 12(6):430–443. doi:10.1002/casp.695
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare no conflict of interest.
Rights and permissions
About this article
Cite this article
Malli, M.A., Forrester-Jones, R. & Murphy, G. Stigma in youth with Tourette’s syndrome: a systematic review and synthesis. Eur Child Adolesc Psychiatry 25, 127–139 (2016). https://doi.org/10.1007/s00787-015-0761-x
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00787-015-0761-x