Abstract
Introduction
Individuals with autism spectrum disorder (ASD) and their families may experience high rates of stigmatization, including self-stigma, public stigma, stigma through association, and structural stigma.
Methods
We conducted a scoping review of peer-reviewed publications to identify, describe, and summarize existing literature related to stigma and ASD.
Results
Twenty-five articles met our inclusion criteria, including 14 qualitative, 9 quantitative, and 1 mixed method studies and 1 meta-synthesis. Four emergent themes include social perceptions of ASD, social isolation, well-being and responses to stigma, and stigma reduction.
Discussion
Knowledge generated from this scoping review provides an overview of the influence that stigma may have on individuals with ASD and their families. Further research directions are suggested to address structural stigma and community inclusion.
This is a preview of subscription content, log in via an institution to check access.
Similar content being viewed by others
References
Ali, A., Hassiotis, A., Strydom, A., & King, M. (2012). Self-stigma in people with intellectual disabilities and courtesy stigma in family carers: a systematic review. Research in Developmental Disabilities, 33(6), 2122–2140. https://doi.org/10.1016/j.ridd.2012.06.013.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Arlington: American Psychiatric Publishing.
Arksey, H., & O’Malley, L. (2005). Scoping studies: towards a methodological framework. International Journal of Social Research Methodology: Theory and Practice, 8(1), 19–32. https://doi.org/10.1080/1364557032000119616.
Benson, A., O’Toole, S., Lambert, V., Gallagher, P., Shahwan, A., & Austin, J. K. (2016). The stigma experiences and perceptions of families living with epilepsy: implications for epilepsy-related communication within and external to the family unit. Patient Education and Counseling, 99(9), 1473–1481. https://doi.org/10.1016/j.pec.2016.06.009.
Blanche, E. I., Diaz, J., Barretto, T., & Cermak, S. A. (2015). Caregiving experiences of Latino families with children with autism spectrum disorder. American Journal of Occupational Therapy, 69(5), 6905185010p1. https://doi.org/10.5014/ajot.2015.017848.
Bos, A. E. R., Pryor, J. B., Reeder, G. D., & Stutterheim, S. E. (2013). Stigma: Advances in theory and research. Basic and Applied Social Psychology, 35(1), 1–9. https://doi.org/10.1080/01973533.2012.746147.
Broady, T. R., Stoyles, G. J., & Morse, C. (2017). Understanding carers’ lived experience of stigma: the voice of families with a child on the autism spectrum. Health & Social Care in the Community, 25(1), 224–233. https://doi.org/10.1111/hsc.12297.
Cappadocia, M. C., Weiss, J. A., & Pepler, D. (2012). Bullying experiences among children and youth with autism spectrum disorders. Journal of Autism and Developmental Disorders, 42(2), 266–277. https://doi.org/10.1007/s10803-011-1241-x.
Chambres, P., Auxiette, C., Vansingle, C., & Gil, S. (2008). Adult attitudes toward behaviors of a six-year-old boy with autism. Journal of Autism and Developmental Disorders, 38(7), 1320–1327. https://doi.org/10.1007/s10803-007-0519-5.
Corcoran, J., Berry, A., & Hill, S. (2015). The lived experience of US parents of children with autism spectrum disorders: a systematic review and meta-synthesis. Journal Of Intellectual Disabilities: JOID, 19(4), 356–366. https://doi.org/10.1177/1744629515577876.
Daniels, A., Como, A., Hergüner, S., Kostadinova, K., Stosic, J., & Shih, A. (2017). Autism in Southeast Europe: a survey of caregivers of children with autism spectrum disorders. Journal of Autism & Developmental Disorders, 47(8), 2314–2325. https://doi.org/10.1007/s10803-017-3145-x.
Danker, J., Strnadová, I., & Cumming, T. M. (2017). Engaging students with autism spectrum disorder in research through participant-driven photo-elicitation research technique. Australasian Journal of Special Education, 41(1), 35–50. https://doi.org/10.1017/jse.2016.7.
Farrugia, D. (2009). Exploring stigma: medical knowledge and the stigmatisation of parents of children diagnosed with autism spectrum disorder. Sociology of Health and Illness, 31(7), 1011–1027. https://doi.org/10.1111/j.1467-9566.2009.01174.x.
Gill, J., & Liamputtong, P. (2011). Being the mother of a child with Asperger’s syndrome: women’s experiences of stigma. Health Care for Women International, 32(8), 708–722. https://doi.org/10.1080/07399332.2011.555830.
Gillespie-Lynch, K., Brooks, P. J., Someki, F., Obeid, R., Shane-Simpson, C., Kapp, S. K., … Smith, D. S. (2015). Changing college students’ conceptions of autism: an online training to increase knowledge and decrease stigma. Journal of Autism and Developmental Disorders, 45(8), 2553–2566. https://doi.org/10.1007/s10803-015-2422-9.
Goffman, E. (1963). Stigma: notes on the management of spoiled identity. Eaglewood Cliffs: Prentice-Hall.
Gray, D. E. (1993). Perceptions of stigma: the parents of autistic children. Sociology of Health & Illness, 15(1), 102–120. https://doi.org/10.1111/1467-9566.ep11343802.
Gray, D. E. (2002a). Ten years on: a longitudinal study of families of children with autism. Journal of Intellectual and Developmental Disability, 27(3), 215–222. https://doi.org/10.1080/136682502100000863.
Gray, D. E. (2002b). “Everybody just freezes. Everybody is just embarrassed”: felt and enacted stigma among parents of children with high functioning autism. Sociology of Health & Illness, 24(6), 734–749. https://doi.org/10.1111/1467-9566.00316.
Gray, C., & Winter, E. (2011). Hearing voices: participatory research with preschool children with and without disabilities. European Early Childhood Education Research Journal, 19(3), 309–320. https://doi.org/10.1080/1350293X.2011.597963.
Green, S. E. (2003). “What do you mean ‘what’s wrong with her?’”: stigma and the lives of families of children with disabilities. Social Science and Medicine, 57(8), 1361–1374. https://doi.org/10.1016/S0277-9536(02)00511-7.
Harandi, A., & Fischbach, R. (2016). How do parents respond to stigma and hurtful words said to or about their child on the autism spectrum? Austin Journal of Autism and Related Disabilities, 2(4), 1030–1037.
Huws, J. C., & Jones, R. S. P. (2010). “They just seem to live their lives in their own little world”: lay perceptions of autism. Disability & Society, 25(3), 331–344. https://doi.org/10.1080/09687591003701231.
Jones, J. L., Gallus, K. L., Viering, K. L., & Oseland, L. M. (2015). ‘Are you by chance on the spectrum?’ Adolescents with autism spectrum disorder making sense of their diagnoses. Disability and Society, 30(10), 1490–1504. https://doi.org/10.1080/09687599.2015.1108902.
Kaushik, A., Kostaki, E., & Kyriakopoulos, M. (2016). The stigma of mental illness in children and adolescents: a systematic review. Psychiatry Research, 243, 469–494. https://doi.org/10.1016/j.psychres.2016.04.042.
Kinnear, S., Link, B., Ballan, M., & Fischbach, R. (2016). Understanding the experience of stigma for parents of children with autism spectrum disorder and the role stigma plays in families’ lives. Journal of Autism & Developmental Disorders, 46(3), 942–953. https://doi.org/10.1007/s10803-015-2637-9.
Levac, D., Colquhoun, H., & Brien, K. K. O. (2010). Scoping studies: advancing the methodology. Implementation Science, 5(69). https://doi.org/10.1186/1748-5908-5-69.
Lewis, A., & Parsons, S. (2008). Understanding of epilepsy by children and young people with epilepsy. European Journal of Special Needs Education, 23(4), 321–335. https://doi.org/10.1080/08856250802387273.
Milacic-Vidojevic, I., Gligorovic, M., & Dragojevic, N. (2014). Tendency towards stigmatization of families of a person with autistic spectrum disorders. International Journal of Social Psychiatry, 60(1), 63–70. https://doi.org/10.1177/0020764012463298.
Minhas, A., Vajaratkar, V., Divan, G., Hamdani, S. U., Leadbitter, K., Taylor, C., … Rahman, A. (2015). Parents’ perspectives on care of children with autistic spectrum disorder in South Asia – views from Pakistan and India. International Review of Psychiatry, 27(3), 247–256. https://doi.org/10.3109/09540261.2015.1049128.
Mogensen, L., & Mason, J. (2015). The meaning of a label for teenagers negotiating identity: experiences with autism spectrum disorder. Sociology of Health & Illness, 37(2), 255–269. https://doi.org/10.1111/1467-9566.12208.
Moyson, T., & Roeyers, H. (2011). The quality of life of siblings of children with autism spectrum disorder. Exceptional Children, 78, 41–55.
Munroe, K., Hammond, L., & Cole, S. (2016). The experiences of African immigrant mothers living in the United Kingdom with a child diagnosed with an autism spectrum disorder: an interpretive phenomenological analysis. Disability & Society, 31(6), 798–819. https://doi.org/10.1080/09687599.2016.1200015.
Neely-Barnes, S. L., Hall, H. R., Roberts, R. J., & Graff, J. C. (2011). Parenting a child with an autism Spectrum disorder: public perceptions and parental conceptualizations. Journal of Family Social Work, 14(3), 208–225. https://doi.org/10.1080/10522158.2011.571539.
Obeid, R., Daou, N., DeNigris, D., Shane-Simpson, C., Brooks, P., & Gillespie-Lynch, K. (2015). A cross-cultural comparison of knowledge and stigma associated with autism Spectrum disorder among college students in Lebanon and the United States. Journal of Autism & Developmental Disorders, 45(11), 3520–3536. https://doi.org/10.1007/s10803-015-2499-1.
Pryor, J. B., & Reeder, G. D. (2011). HIV-related stigma. In C. J. Hall, J. C. Hall, & B. J. Cockerell (Eds.), HIV/AIDS in the Post-HAART Era: manifestations, treatment, and epidemiology (pp. 790–806). Shelton, PMPH-USA.
Ranson, N. J., & Byrne, M. K. (2014). Promoting peer acceptance of females with higher-functioning autism in a mainstream education setting: a replication and extension of the effects of an autism anti-stigma program. Journal of Autism and Developmental Disorders, 44(11), 2778–2796. https://doi.org/10.1007/s10803-014-2139-1.
Russell, G., & Norwich, B. (2012). Dilemmas, diagnosis and de-stigmatization: parental perspectives on the diagnosis of autism spectrum disorders. Clinical Child Psychology & Psychiatry, 17(2), 229–245. https://doi.org/10.1177/1359104510365203.
Staniland, J. J., & Byrne, M. K. (2013). The effects of a multi-component higher-functioning autism anti-stigma program on adolescent boys. Journal of Autism & Developmental Disorders, 43(12), 2816–2829. https://doi.org/10.1007/s10803-013-1829-4.
Thibodeau, R., & Finley, J. (2017). On associative stigma: implicit and explicit evaluations of a mother of a child with autism spectrum disorder. Journal of Child and Family Studies, 26(3), 843–850. https://doi.org/10.1007/s10826-016-0615-2.
Werner, S., & Shulman, C. (2013). Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. Research in Developmental Disabilities, 34(11):4103–4114. https://doi.org/10.1016/j.ridd.2013.08.029.
Werner, S., & Shulman, C. (2015). Does type of disability make a difference in affiliate stigma among family caregivers of individuals with autism, intellectual disability or physical disability? Journal of Intellectual Disability Research, 59(3), 272–283. https://doi.org/10.1111/jir.12136.
Wiener, J., Malone, M., Varma, A., Markel, C., Biondic, D., Tannock, R., & Humphries, T. (2012). Children’s perceptions of their ADHD symptoms: positive illusions, attributions, and stigma. Canadian Journal of School Psychology, 27(3), 217–242. https://doi.org/10.1177/0829573512451972.
Woodgate, R. L., Ateah, C., & Secco, L. (2008). Living in a world of our own: the experience of parents who have a child with autism. Qualitative Health Research. https://doi.org/10.1177/1049732308320112.
Author information
Authors and Affiliations
Corresponding author
Ethics declarations
Conflict of interest
The authors declare that they have no conflict of interest.
Additional information
Publisher’s Note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Mazumder, R., Thompson-Hodgetts, S. Stigmatization of Children and Adolescents with Autism Spectrum Disorders and their Families: a Scoping Study. Rev J Autism Dev Disord 6, 96–107 (2019). https://doi.org/10.1007/s40489-018-00156-5
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s40489-018-00156-5