Abstract
Background
There is a growing body of research focused on autistic individuals who present with aggressive behaviour. Aggressive behaviour has been found to occur more frequently in autism compared with other developmental disabilities or the general population. The most common types of aggressive behaviours are self-injurious behaviours, aggression towards others and the destruction of property. Aggressive behaviour can threaten access to support services and education. Many types of stigma are experienced by parents as a result of their child’s diagnosis or observed aggressive behaviour (e.g. ignorance, prejudice and discrimination). The aim of this systematic review was to synthesise the current research into the experience of stigma by parents of autistic children who display aggressive behaviour. The specific question addressed by this review was ‘Do parents of autistic children with aggressive behaviours experience stigma?’. This review found that stigma is experienced in many forms and contributes to higher levels of stress and poorer quality of life for these families than for the general population and other disabilities.
Methods
The published English-language literature was examined using multiple online databases, grey literature and hand searches. The review was conducted and reported using PRISMA guidelines. Studies investigating family members of children with a diagnosis of autism who exhibited aggressive behaviour were included. An additional criterion was that the participants had experienced some form of stigma because of their child’s autism and/or aggressive behaviour. All studies that met the criteria were critically appraised. No limits were applied for date of publication up until February 6, 2019.
Results
Total search results yielded 5707 records. Of these, nine studies were identified and reviewed. Two were identified as mixed method designs and the remaining seven were qualitative designs. Despite diverse research methods, research questions, interview guides, a large variation in age range and year of publication, the stigma associated with caring for an autistic child with aggressive behaviour was consistently identified.
Conclusions
Taken together, the available research literature suggests that autistic people and their families experience high levels of stigma. For parents of autistic children who behave aggressively, stigma is even more prominent and invasive. This systematic review can conclude that this triad of autism, aggression and stigma is not well understood and is under-investigated.
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Notes
Self-harm and self-injury are used interchangeably within the literature under review. Where possible the authors have used self-injury unless self-harm is part of a theme title.
Note: High and low functioning are terms that are no longer used within the autism vernacular.
References
Adams, D., Young, K., Simpson, K., & Keen, D. (2019). Parent descriptions of the presentation and management of anxiousness in children on the autism spectrum. Autism, 23(4), 980–992. https://doi.org/10.1177/1362361318794031
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77–101. https://doi.org/10.1191/1478088706qp063oa
Carroll, D., Hallett, V., McDougle, C. J., Aman, M. G., McCracken, J. T., Tierney, E., . . . Scahill, L. (2014). Examination of aggression and self-injury in children with autism spectrum disorders and serious behavioral problems. Child and Adolescent Psychiatric Clinics of North America, 23(1), 57–72. https://doi.org/10.1016/j.chc.2013.08.002
Cohen, S. R., & Miguel, J. (2018). Amor and social stigma: ASD beliefs among immigrant Mexican parents. Journal of Autism and Developmental Disorders, 48(6), 1995–2009. https://doi.org/10.1007/s10803-017-3457-x
Corrigan, P. W., Larson, J. E., & Rüsch, N. (2009). Self-stigma and the “why try” effect: impact on life goals and evidence-based practices. World psychiatry, 8(2), 75–81. https://doi.org/10.1002/j.2051-5545.2009.tb00218.x
Covidence systematic review software. (2018). Retrieved from www.covidence.org
Doehring, P., Reichow, B., Palka, T., Phillips, C., & Hagopian, L. (2014). Behavioral approaches to managing severe problem behaviors in children with autism spectrum and related developmental disorders: a descriptive analysis. Child and Adolescent Psychiatric Clinics of North America, 23(1), 25–40. https://doi.org/10.1016/j.chc.2013.08.001
Erlandson, D. A. (1993). Doing naturalistic inquiry: A guide to methods. Newbury Park, California: Sage.
Fairthorne, J., Fisher, C., Bourke, J., & Leonard, H. (2014). Experiences impacting the quality of life of mothers of children with autism and intellectual disability. Psychology Research, 4(8), 666–668.
Gray, D. E. (1993a). Negotiating autism: Relations between parents and treatment staff. Social Science & Medicine, 36(8), 1037–1046. https://doi.org/10.1016/0277-9536(93)90121-J
Gray, D. E. (1993b). 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. (1994). Coping with autism: Stresses and strategies. Sociology of Health & Illness, 16(3), 275–300. https://doi.org/10.1111/1467-9566.ep11348729
Gray, D. E. (2002a). ‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high functioning autism. Sociology of Health and Illness, 24(6), 734–749. https://doi.org/10.1111/1467-9566.00316
Gray, D. E. (2002b). 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/10.1080/1366825021000008639
Gray, D. E., & Holden, W. J. (1992). Psycho-social well-being among the parents of children with autism. Australia and New Zealand Journal of Developmental Disabilities, 18(2), 83–93. https://doi.org/10.1080/07263869200034841
Gupta, A., & Singhal, N. (2005). Psychosocial support for families of children with autism. Asia Pacific Disability Rehabilitation Journal, 16(2), 62–83. Retrieved from http://ezproxy.newcastle.edu.au/login?url=http://search.ebscohost.com/login.aspx?direct=true&db=ccm&AN=106387138&site=ehost-live&scope=site
Hill, A. P., Zuckerman, K. E., Hagen, A. D., Kriz, D. J., Duvall, S. W., van Santen, J., … Fombonne, E. (2014). Aggressive behavior problems in children with autism spectrum disorders: Prevalence and correlates in a large clinical sample. Research in Autism Spectrum Disorders, 8(9), 1121-1133.https://doi.org/10.1016/j.rasd.2014.05.006
Hodgetts, S., Nicholas, D., & Zwaigenbaum, L. (2013). Home sweet home? Families’ experiences with aggression in children with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 28(3), 166–174. https://doi.org/10.1177/1088357612472932
Ilias, K., Liaw, J. H. J., Cornish, K., Park, M.S.-A., & Golden, K. J. (2017). Wellbeing of mothers of children with “A-U-T-I-S-M” in Malaysia: An interpretative phenomenological analysis study. Journal of Intellectual & Developmental Disability, 42(1), 74–89. https://doi.org/10.3109/13668250.2016.1196657
Jenkinson, R., Milne, E., & Thompson, A. (2020). The relationship between intolerance of uncertainty and anxiety in autism: A systematic literature review and meta-analysis. Autism, 1362361320932437.https://doi.org/10.1177/1362361320932437
Kanne, S. M., & Mazurek, M. O. (2011). Aggression in children and adolescents with ASD: Prevalence and risk factors. Journal of Autism and Developmental Disorders, 41(7), 926–937. https://doi.org/10.1007/s10803-010-1118-4
Kenny, L., Hattersley, C., Molins, B., Buckley, C., Povey, C., & Pellicano, E. (2015). Which terms should be used to describe autism? Perspectives from the UK autism community. Autism: the International Journal of Research and Practice, 20(4), 442–462.
Kiernan, J., Mitchell, D., Stansfield, J., & Taylor, C. (2019). Mothers’ perspectives on the lived experience of children with intellectual disability and challenging behaviour. Journal of Intellectual Disabilities, 23(2), 175–189. https://doi.org/10.1177/1744629517737149
Lau, B. Y., Leong, R., Uljarevic, M., Lerh, J. W., Rodgers, J., Hollocks, M. J., … Magiati, I. (2020). Anxiety in young people with autism spectrum disorder: Common and autism-related anxiety experiences and their associations with individual characteristics. Autism, 24(5), 1111-1126.https://doi.org/10.1177/1362361319886246
Lecavalier, L. (2006). Behavioral and emotional problems in young people with pervasive developmental disorders: Relative prevalence, effects of subject characteristics, and empirical classification. Journal of Autism and Developmental Disorders, 36(8), 1101–1114. https://doi.org/10.1007/s10803-006-0147-5
Lecavalier, L., Leone, S., & Wiltz, J. (2005). The impact of behaviour problems on caregiver stress in young people with autism spectrum disorders. Journal of Intellectual Disability Research, 50(3), 172–183. https://doi.org/10.1111/j.1365-2788.2005.00732.x
Liberati, A., Altman, D. G., Tetzlaff, J., Mulrow, C., Gøtzsche, P. C., Ioannidis, J. P. A., & Moher, D. (2009). The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate healthcare interventions: explanation and elaboration. British Medical Journal, 339, e1000097–b2700. https://doi.org/10.1136/bmj.b2700
Ludlow, A., Skelly, C., & Rohleder, P. (2012). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, 17(5), 702–711. https://doi.org/10.1177/1359105311422955
Mandell, D. S. (2008). Psychiatric hospitalization among children with autism spectrum disorders. Journal of Autism and Developmental Disorders, 38(6), 1059–1065. https://doi.org/10.1007/s10803-007-0481-2
Matson, J. L., & Rivet, T. T. (2008). Characteristics of challenging behaviours in adults with autistic disorder, PDD-NOS, and intellectual disability. Journal of Intellectual & Developmental Disability, 33(4), 323–329. https://doi.org/10.1080/13668250802492600
McStay, R. L., Trembath, D., & Dissanayake, C. (2014). Stress and family quality of life in parents of children with autism spectrum disorder: Parent gender and the double ABCX model. Journal of Autism and Developmental Disorders, 44(12), 3101–3118. https://doi.org/10.1007/s10803-014-2178-7
Miles, M. B., Huberman, A. M., & Saldana, J. (2014). Qualitative Data Analysis: A Methods Sourcebook. London: Sage.
Myers, B. J., Mackintosh, V. H., & Goin-Kochel, R. P. (2009). “My greatest joy and my greatest heart ache:” Parents’ own words on how having a child in the autism spectrum has affected their lives and their families’ lives. Research in Autism Spectrum Disorders, 3, 670–684. https://doi.org/10.1016/j.rasd.2009.01.004
Pouw, L. B., Rieffe, C., Oosterveld, P., Huskens, B., & Stockmann, L. (2013). Reactive/proactive aggression and affective/cognitive empathy in children with ASD. Research in Developmental Disabilities, 34(4), 1256–1266. https://doi.org/10.1016/j.ridd.2012.12.022
Scambler, G. (2004). Re-framing stigma: Felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Social Theory & Health, 2(1), 29–46. https://doi.org/10.1057/palgrave.sth.8700012
Schieve, L. A., Blumberg, S. J., Rice, C., Visser, S. N., & Boyle, C. (2007). The relationship between autism and parenting stress. Pediatrics, 119(Supplement 1), S114–S121. https://doi.org/10.1542/peds.2006-2089Q
Sheehan, L., Nieweglowski, K., & Corrigan, P. W. (2016). Structures and types of stigma. In (pp. 43–66). Cham: Springer International Publishing.
Swaab, L., McCormack, L., & Campbell, L. E. (2017). Distress and psychological growth in parenting an adult child with autism spectrum disorder and aggression. Advances in Neurodevelopmental Disorders, 1(4), 260–270. https://doi.org/10.1007/s41252-017-0033-5
Thornicroft, G., Rose, D., Kassam, A., & Sartorius, N. (2007). Stigma: Ignorance, prejudice or discrimination? British Journal of Psychiatry, 190(3), 192–193. https://doi.org/10.1192/bjp.bp.106.025791
Van Mansen, M. (1990). Researching lived experience: Human science for an action sensitive pedagogy. Ontario: Althouse Press.
Wayment, H. A., Al-Kire, R., & Brookshire, K. (2018). Challenged and changed: Quiet ego and posttraumatic growth in mothers raising children with autism spectrum disorder. Autism.https://doi.org/10.1177/1362361318763971
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Swaab, L., Goodwin, J., Wroe, J. et al. Stigma Associated with Parenting an Autistic Child with Aggressive Behaviour: a Systematic Review. Rev J Autism Dev Disord 10, 281–294 (2023). https://doi.org/10.1007/s40489-021-00292-5
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DOI: https://doi.org/10.1007/s40489-021-00292-5