Abstract
Objectives
Parents of children with autism spectrum disorder (ASD) face many unique challenges and experience higher parenting stress than other parenting groups. These parents also experience internalised stigma by association with their ASD affected child, known as affiliate stigma. These factors predict greater psychological distress and subsequently decreased well-being for parents. Recent evidence has suggested that the psychological construct of self-compassion may act as a protective factor against stigma, as well as positively influencing the experiences of parents.
Methods
An online survey was conducted with parents of children with ASD (N = 237), administering standardised measures to investigate levels of stigma and self-compassion, as well as psychological outcomes.
Results
Self-compassion was positively correlated with subjective well-being and negatively correlated with psychological distress and parenting stress. Hierarchical multiple regression controlled for background factors, known predictors (child symptom severity and social support), and various aspects of stigma. Self-compassion and affiliate stigma significantly added to explained variance as a predictor of well-being, psychological distress, and parenting stress.
Conclusions
Self-compassion was found to predict psychological well-being, lower distress, and lower parenting stress. If self-compassion is found to be causally related to these outcomes, interventions aimed at cultivating self-compassion and decreasing affiliate stigma may have benefits for parents of children with ASD.
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References
Altiere, M. J., & von Kluge, S. (2009). Searching for acceptance: challenges encountered while raising a child with autism. Journal of Intellectual and Developmental Disability, 34, 142–152. https://doi.org/10.1080/13668250902845202.
American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: American Psychiatric Association.
Andrews, G., & Slade, T. (2001). Interpreting scores on the Kessler Psychological Distress Scale (K10). Australian and New Zealand Journal of Public Health, 25, 494–497. https://doi.org/10.1111/j.1467-842X.2001.tb00310.x.
Australian Unity Wellbeing Index. (2017). The wellbeing of Australians: financial wellbeing, 2017. Retrieved from http://www.acqol.com.au/reports/survey-reports/survey-034-report.pdf
Barnard, L. K., & Curry, J. F. (2011). Self-compassion: conceptualizations, correlates, & interventions. Review of General Psychology, 15, 289–303. https://doi.org/10.1037/a0025754.
Bechet, A. K., Johnson, N. L., & Zauszniewski, J. A. (2012). Resilience in family members of persons with autism spectrum disorder: a review of the literature. Issues in Mental Health Nursing, 33, 650–656. https://doi.org/10.3109/01612840.2012.671441.
Benson, P. R. (2010). Coping, distress, and well-being in mothers of children with autism. Research in Autism Spectrum Disorders, 4, 217–228. https://doi.org/10.1016/j.rasd.2009.09.008.
Bonis, S. (2016). Stress and parents of children with autism: a review of literature. Issues in Mental Health Nursing, 37, 153–163. https://doi.org/10.3109/01612840.2015.1116030.
Cachia, R., Anderson, L., & Moore, A. (2016). Mindfulness, stress and well-being in parents of children with autism spectrum disorder: a systematic review. Journal of Child and Family Studies, 25, 1–14. https://doi.org/10.1007/s10826-015-0193-8.
Cantwell, J., Muldoon, O., & Gallagher, S. (2015). The influence of self-esteem and social support on the relationship between stigma and depressive symptomology in parents caring for children with intellectual disabilities. Journal of Intellectual Disability Research, 59, 948–957. https://doi.org/10.1111/jir.12205.
Chan, K. K., & Lam, C. B. (2017). Trait mindfulness attenuates the adverse psychological impact of stigma on parents of children with autism spectrum disorder. Mindfulness, 8, 984–994. https://doi.org/10.1007/s12671-016-0675-9.
Chang, E. C., Yu, T., Najarian, A. S., Wright, K. M., Chen, W., Chang, O. D., et al. (2017). Understanding the association between negative life events and suicidal risk in college students: examining self-compassion as a potential mediator. Journal of Clinical Psychology, 73, 745–755. https://doi.org/10.1002/jclp.22374.
Cummins, R. A., Eckersley, R., Pallant, J., Van Vugt, J., & Misajon, R. (2003). Developing a national index of subjective wellbeing: the Australian Unity Wellbeing Index. Social Indicators Research, 64, 159–190.
Dagnan, D., & Waring, M. (2004). Linking stigma to psychological distress: testing a social-cognitive model of the experience of people with intellectual disabilities. Clinical Psychology and Psychotherapy, 11, 247–254. https://doi.org/10.1002/cpp.413.
Dekker, M. C., Nunn, R. J., Einfeld, S. E., Tonge, B. J., & Koot, H. M. J. (2002). Assessing emotional and behavioral problems in children with intellectual disability: revisiting the factor structure of the developmental behavior checklist. Journal of Autism and Developmental Disorders, 32, 601–610. https://doi.org/10.1023/A:1021263216093.
Diener, E. D., Emmons, R. A., Larsen, R. J., & Griffin, S. (1985). The satisfaction with life scale. Journal of Personality Assessment, 49, 71–75. https://doi.org/10.1207/s15327752jpa4901_13.
Fernández M.C. & Arcia E. (2004). Disruptive behaviors and maternal responsibility: A complex portrait of stigma, self-blame and other reactions. Hispanic Journal of Behavioral Sciences, 26, 356–372. https://doi.org/10.1177/0739986304267208.
Finlay-Jones, A. L., Rees, C. S., & Kane, R. T. (2015). Self-compassion, emotion regulation and stress among Australian psychologists: testing an emotion regulation model of self-compassion using structural equation modeling. PLoS ONE, 10. https://doi.org/10.1371/journal.pone.0133481.
Germer, C. K., & Neff, K. D. (2013). Self-compassion in clinical practice. Journal of Clinical Psychology, 69, 856–867. https://doi.org/10.1002/jclp.22021.
Goffman, E. (1963). Stigma: notes on the management of spoiled identity. Harmondsworth: Penguin.
Green, S. E. (2001). ‘Oh, those therapists will become your best friends’: maternal satisfaction with clinics providing physical, occupational and speech therapy services to children with disabilities. Sociology of Health and Illness, 23, 798–828. https://doi.org/10.1111/1467-9566.00276.
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, 1361–1374. https://doi.org/10.1016/S0277-9536(02)00511-7.
Hall, H. R., & Graff, C. J. (2012). Maladaptive behaviors of children with autism: parent support, stress, and coping. Issues in Comprehensive Pediatric Nursing, 35, 194–214. https://doi.org/10.3109/01460862.2012.734210.
Hardan-Khalil, K., & Mayo, A. (2015). Psychometric properties of the multidimensional scale of perceived social support. Clinical Nurse Specialist, 29, 258–261. https://doi.org/10.1097/NUR.0000000000000148.
Hayes, S. A., & Watson, S. L. (2013). The impact of parenting stress: a meta-analysis of studies comparing the experience of parenting stress in parents of children with and without autism spectrum disorder. Journal of Autism and Developmental Disorders, 43, 629–642. https://doi.org/10.1007/s10803-012-1604-y.
Hoaglin, D. C., Iglewicz, B., & Tukey, J. W. (1986). Performance of some resistant rules for outlier labelling. Journal of the American Statistical Association, 81(396), 991–999. https://doi.org/10.1080/01621459.1986.10478363.
Ingersoll, B., & Hambrick, D. Z. (2011). The relationship between the broader autism phenotype, child severity, and stress and depression in parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders, 5, 337–344. https://doi.org/10.1016/j.rasd.2010.04.017.
International Wellbeing Group. (2013). Personal wellbeing index (5th ed.). Melbourne: Centre on Quality of Life, Deakin University.
Johnson, N., Frenn, M., Feetham, S., & Simpson, P. (2011). Autism spectrum disorder: parenting stress, family functioning and health-related quality of life. Families, Systems, and Health, 29, 232–252. https://doi.org/10.1037/a0025341.
Junior, S. B. M., Celestino, M. I. O., Serra, J. P. C., Caron, J., & Pondé, M. P. (2016). Risk and protective factors for symptoms of anxiety and depression in parents of children with autism spectrum disorder. Developmental Neurorehabilitation, 19, 146–153. https://doi.org/10.3109/17518423.2014.925519.
Keenan, B. M., Newman, L. K., Gray, K. M., & Rinehart, N. J. (2016). Parents of children with ASD experience more psychological distress, parenting stress, and attachment-related anxiety. Journal of Autism and Developmental Disorders, 46, 2979–2991. https://doi.org/10.1007/s10803-016-2836-z.
Kessler, R. C., Andrews, G., Colpe, L. J., Hiripi, E., Mroczek, D. K, Normand, S., … Zaslavsky, A. M. (2002). Short screening scales to monitor population prevalences and trends in non-specific psychological distress. Psychological Medicine, 32, 959-976. https://doi.org/10.1017/S0033291702006074
Kinnear, S. H., Link, B. G., Ballan, M. S., & Fischbach, R. L. (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 and Developmental Disorders, 46, 942–953. https://doi.org/10.1007/s10803-015-2637-9.
Kohane, I. S., McMurry, A., Weber, G., MacFadden, D., Rappaport, L., Kunkel, L., et al. (2012). The co-morbidity burden of children and young adults with autism spectrum disorders. PLoS ONE, 7. https://doi.org/10.1371/journal.pone.0033224.
Lai, W., & Oei, T. (2014). Coping in parents and caregivers of children with autism spectrum disorders (ASD): a review. Review Journal of Autism and Developmental Disorders, 1, 207–224. https://doi.org/10.1007/s40489-014-0021-x.
Leary, M. R., Tate, E. B., Adams, C. E., Allen, A. B., Hancock, J. C., & Carver, J. (2007). Self-compassion and reactions to unpleasant self-relevant events: the implications of treating oneself kindly. Journal of Personality and Social Psychology, 92, 887–904. https://doi.org/10.1037/0022-3514.92.5.887.
Lee, P. F., Thomas, R. E., & Lee, P. A. (2015). Approach to autism spectrum disorder: using the new DSM-V diagnostic criteria and the CanMEDS-FM framework. Canadian Family Physician, 61, 421–424.
Link, B., & Phelan, J. C. (2001). Conceptualizing stigma. Annual Review of Sociology, 27, 363–385. https://doi.org/10.1146/annurev.soc.27.1.363.
Ludlow, A., Skelly, C., & Rohleder, P. (2011). Challenges faced by parents of children diagnosed with autism spectrum disorder. Journal of Health Psychology, 17, 702–711. https://doi.org/10.1177/1359105311422955.
Mak, W. S., & Cheung, R. Y. (2008). Affiliate stigma among caregivers of people with intellectual disability or mental illness. Journal of Applied Research in Intellectual Disabilities, 21, 532–545. https://doi.org/10.1111/j.1468-3148.2008.00426.x.
Mak, W. S., & Kwok, Y. T. (2010). Internalization of stigma for parents of children with autism spectrum disorder in Hong Kong. Social Science and Medicine, 70, 2045–2051. https://doi.org/10.1016/j.socscimed.2010.02.023.
Marsack, C. N., & Samuel, P. S. (2017). Mediating effects of social support on quality of life for parents of adults with autism. Journal of Autism and Developmental Disorders, 47, 2378–2389. https://doi.org/10.1007/s10803-017-3157-6.
Mills, J., Wand, T., & Fraser, J. A. (2015). On self-compassion and self-care in nursing: selfish or essential for compassionate care? International Journal of Nursing Studies, 52, 791–793. https://doi.org/10.1016/j.ijnurstu.2014.10.009.
Muris, P., & Petrocchi, N. (2017). Protection or vulnerability? A meta-Analysis of the relations between the positive and negative components of self-compassion and psychopathology. Clinical Psychology and Psychotherapy, 24, 373–383. https://doi.org/10.1002/cpp.2005.
Neely, M., Schallert, E., Mohammed, D., Roberts, L., & Chen, S. (2009). Self-kindness when facing stress: the role of self-compassion, goal regulation, and support in college students’ well-being. Motivation and Emotion, 33, 88–97. https://doi.org/10.1007/s11031-008-9119-8.
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, 208–225. https://doi.org/10.1080/10522158.2011.571539.
Neff, K. D. (2003a). Self-compassion: an alternative conceptualization of a healthy attitude toward oneself. Self and Identity, 2, 85–101. https://doi.org/10.1080/15298860309032.
Neff, K. D. (2003b). The development and validation of a scale to measure self-compassion. Self and Identity, 2, 223–250. https://doi.org/10.1080/15298860309027.
Neff, K. D., & Beretvas, S. N. (2013). The role of self-compassion in romantic relationships. Self and Identity, 12, 78–98. https://doi.org/10.1080/15298868.2011.639548.
Neff, K. D., & Faso, D. J. (2015). Self-compassion and well-being in parents of children with autism. Mindfulness, 6, 938–947. https://doi.org/10.1007/s12671-014-0359-2.
Neff, K. D., & Germer, C. K. (2013). A pilot study and randomized controlled trial of the mindful self-compassion program. Journal of Clinical Psychology, 69, 28–44. https://doi.org/10.1002/jclp.21923.
Neff, K. D., Hsieh, Y., & Dejitterat, K. (2005). Self-compassion, achievement goals, and coping with academic Failure. Self and Identity, 4, 263–287. https://doi.org/10.1080/13576500444000317.
Neff, K. D., Kirkpatrick, K. L., & Rude, S. S. (2007). Self-compassion and adaptive psychological functioning. Journal of Research in Personality, 41, 139–154. https://doi.org/10.1016/j.jrp.2006.03.004.
Neff, K. D., Tóth-Király, I., Yarnell, L. M., Arimitsu, K., Castilho, P., Ghorbani, N., Guo, H. X., Hirsch, J. K., Hupfeld, J., Hutz, C. S., Kotsou, I., Lee, W. K., Montero-Marin, J., Sirois, F. M., de Souza, L. K., Svendsen, J. L., Wilkinson, R. B., & Mantzios, M. (2018). Examining the factor structure of the Self-Compassion Scale in 20 diverse samples: support for use of a total score and six subscale scores. Psychological Assessment. Advance online publication. https://doi.org/10.1037/pas0000629.
Osman, A., Lamis, D. A., Freedenthal, S., Gutierrez, P. M., & McNaughton-Cassill, M. (2012). The multidimensional scale of perceived social support: analyses of internal reliability, measurement invariance, and correlates across gender. Journal of Personality Assessment, 96, 103–112. https://doi.org/10.1080/00223891.2013.838170.
Parcesepe, A. M., & Cabassa, L. J. (2013). Public stigma of mental illness in the United States: a systematic literature review. Administration & Policy in Mental Health and Mental Health Services Research, 40, 384–399. https://doi.org/10.1007/s10488-012-0430-z.
Parner, E. T., Thorsen, P., Dixon, G., De Klerk, N., Leonard, H., Nassar, N., … Glasson, E. J. (2011). A comparison of autism prevalence trends in Denmark and Western Australia. Journal of Autism and Developmental Disorders, 41, 1601-1608. https://doi.org/10.1007/s10803-011-1186-0
Pozo, P., Sarriá, E., & Brioso, A. (2014). Family quality of life and psychological well-being in parents of children with autism spectrum disorders: a double ABCX model. Journal of Intellectual Disability Research, 58, 442–458. https://doi.org/10.1111/jir.12042.
Raes, F. (2011). The effect of self-compassion on the development of depression symptoms in a non-clinical sample. Mindfulness, 2, 33–36. https://doi.org/10.1007/s12671-011-0040-y.
Ridner, S. H. (2004). Psychological distress: concept analysis. Journal of Advanced Nursing, 45, 536–545. https://doi.org/10.1046/j.1365-2648.2003.02938.x.
Scheid, T. L., & Brown, T. N. (2010). Stressors, stress, and distress. In B. Wheaton & S. Montazer (Eds.), A handbook for the study of mental health: social contexts, theories, and systems (pp. 171–199). Cambridge: Cambridge University Press.
Shin, J., Nhan, N. V., Crittenden, K. S., Hong, H. T. D., Flory, M., & Ladinsky, J. (2006). Parenting stress of mothers and fathers of young children with cognitive delays in Vietnam. Journal of Intellectual Disability Research, 50, 748–760. https://doi.org/10.1111/j.1365-2788.2006.00840.x.
Silva, L., & Schalock, M. (2012). Autism Parenting Stress Index: Initial psychometric evidence. Journal of Autism and Developmental Disorders, 42, 566–574. https://doi.org/10.1007/s10803-011-1274-1.
Slade, T., Grove, R., & Burgess, P. (2011). Kessler Psychological Distress Scale: normative data from the 2007 Australian national survey of mental health and wellbeing. Australian and New Zealand Journal of Psychiatry, 45, 308–316. https://doi.org/10.3109/00048674.2010.543653.
Smeets, E., Neff, K., Alberts, H., & Peters, M. (2014). Meeting suffering with kindness: effects of a brief self-compassion intervention for female college students. Journal of Clinical Psychology, 70, 794–807. https://doi.org/10.1002/jclp.22076.
Struening, E. L., Perlick, D. A., Link, B. G., Hellman, F., Herman, D., & Sirey, J. A. (2001). Stigma as a barrier to recovery: The extent to which caregivers believe most people devalue consumers and their families. Psychiatric Services, 52, 1633–1638. https://doi.org/10.1176/appi.ps.52.12.1633.
Sunderland, M., Slade, T., Stewart, G., & Andrews, G. (2011). Estimating the prevalence of DSM-IV mental illness in the Australian general population using the Kessler Psychological Distress Scale. Australian and New Zealand Journal of Psychiatry, 45, 880–889. https://doi.org/10.3109/00048674.2011.606785.
Taffe, J. R., Gray, K. M., Einfeld, S. L., Dekker, M. C., Koot, H. M., Emerson, E., … Tonge, B. J. (2007). Short form of the Developmental Behaviour Checklist. American Journal on Mental Retardation, 112, 31-39.
Weiss, J. A., Cappadocia, M. C., MacMullin, J. A., Viecili, M., & Lunsky, Y. (2012). The impact of child problem behaviors of children with ASD on parent mental health: The mediating role of acceptance and empowerment. Autism, 16, 261–274. https://doi.org/10.1177/1362361311422708.
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, 4103–4114. https://doi.org/10.1016/j.ridd.2013.08.029.
Williams, M. J., Dalgleish, T., Karl, A., Kuyken, W. R., & Reynolds, C. R. (2014). Examining the factor structures of the Five Facet Mindfulness Questionnaire and the Self-Compassion Scale. Psychological Assessment, 26, 407–418. https://doi.org/10.1037/a0035566.
Wong, C. Y., Mak, W. S., & Liao, K. Y. (2016). Self-compassion: a potential buffer against affiliate stigma experienced by parents of children with autism spectrum disorders. Mindfulness, 7, 1385–1395. https://doi.org/10.1007/s12671-016-0580-2.
Wright, D. B., London, K., & Field, A. P. (2011). Using bootstrap estimation and the plug-in principle for clinical psychology data. Journal of Experimental Psychopathology, 2(2), 252–270. https://doi.org/10.5127/jep.013611.
Zimet, G. D., Dahlem, N. W., Zimet, S. G., & Farley, G. K. (1998). The multidimensional scale of perceived social support. Journal of Personality Assessment, 52, 30–41. https://doi.org/10.1207/s15327752jpa5201_2.
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This research was conducted as part of Honours in Psychology within The University of Adelaide. No additional funding was received.
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ST designed and executed the study, performed the data analyses, and wrote the paper. MP collaborated with design and writing of the study, performed additional data analyses, and led revisions to the paper. RR collaborated with design and writing of the study and revisions. All authors approved the final version of the manuscript before submission.
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Torbet, S., Proeve, M. & Roberts, R.M. Self-Compassion: a Protective Factor for Parents of Children with Autism Spectrum Disorder. Mindfulness 10, 2492–2506 (2019). https://doi.org/10.1007/s12671-019-01224-5
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DOI: https://doi.org/10.1007/s12671-019-01224-5