Supporting Background, Caring Practices and Perceptions of Care in Narratives of Parents of Children Living With Autism Spectrum Disorder
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Abstract
This study explores the childrearing practices of parents raising children with autism spectrum disorder (ASD), using D. H. Morgan’s family practices framework (Morgan, 1996, 2001, 2002, 2004, 2011), the concepts of care capital and Bowlby’s thoughts on caringscapes (Bowlby, 2012, 2017, 2019). It also addresses questions of care and autonomy within the context of disability. The author’s dual role as both researcher and parent plays a significant part in the research process. Using Grounded Theory methodology, the study involved 19 interviews with Hungarian parents of children with ASD. The findings reveal that parenting practices are shaped by the lack of formal care. Deficiencies in institutional support shift additional care responsibilities to the primary sphere of care (Lynch, 2007), intensifying parental care burdens. Parents are forced to stretch already limited resources, which can restrict both their own and their child’s experience of autonomy. Furthermore, the availability of formal care alone does not ensure a sense of agency or control for parents. Some parents with greater resources extend their roles beyond individual caregiving. They challenge dominant perceptions of autism and strive to reshape local caringscapes, effectively “rewriting” societal understandings of otherness and disability.
References
- Betz, T., Honig, M.-S., & Ostner, I. (2017). Parents in the Spotlight. Parenting Practices and Support from a Comparative Perspective. Verlag Barbara Budrich.
- Bowlby, S. (2012). Recognising the Time—Space Dimensions of Care: Caringscapes and Carescapes. Environment and Planning A: Economy and Space, 44(9), 2101–2118. https://doi.org/10.1068/a44492
- Bowlby, S. (2017). Children, young people and ‘caringscapes’. In J. Horton & M. Pyer (Eds.), Children, Young People and Care (pp. 244–249). Routledge.
- Bowlby, S., & McKie, L. (2019). Care and caring: An ecological framework. Area, 51(3), 532–539. https://doi.org/10.1111/area.12511
- Brisson, D. (2009). Testing the Relationship of Formal Bonding, Informal Bonding, and Formal Bridging Social Capital on Key Outcomes for Families in Low-Income Neighborhoods. The Journal of Sociology & Social Welfare, 36(1). https://doi.org/10.15453/0191-5096.3411
- Broese van Groenou, M. I., & De Boer, A. (2016). Providing informal care in a changing society. European Journal of Ageing, 13(3), 271–279. https://doi.org/10.1007/s10433-016-0370-7
- Corbin, J., & Strauss, A. (2015). A kvalitatív kutatás alapjai [The basics of qualitative research]. L’Harmattan.
- Daly, M. (2017). Parenting: Critical insights from a sociological perspective. In T. Betz, M.-S. Honig, & I. Ostner (Eds.), Parents in the spotlight. Parenting practices and support from a comparative perspective. Barbara Budrich Publishers.
- Denzin, N. K., & Lincoln, Y. S. (2005). Introduction. In N. K. Denzin & Y. S. Lincoln (Eds.), The Sage Handbook of Qualitative Research (3rd ed., pp. 1–33). SAGE Publications, Inc.
- Ells, C., Hunt, M. R., & Chambers-Evans, J. (2011). Relational autonomy as an essential component of patient-centered care. IJFAB: International Journal of Feminist Approaches to Bioethics, 4(2), 79–101. https://doi.org/10.3138/ijfab.4.2.79
- Francis, A. (2012). The Dynamics of Family Trouble: Middle-Class Parents Whose Children Have Problems. Journal of Contemporary Ethnography, 41(4), 371–401. https://doi.org/10.1177/0891241611426142
- Francis, A. (2015). Family Trouble. Rudgers University Press.
- Goddard, J. A., Lehr, R., & Lapadat, J. C. (2000). Parents of Children With Disabilities: Telling a Different Story. Canadian Journal of Counselling and Psychotherapy, 34(4).
- Hill, T. (2022). Understanding unmet aged care need and care inequalities among older Australians. Ageing & Society, 42(11), 2665–2694. https://doi.org/10.1017/S0144686X21000222
- Hochschild, A. R. (1995). The Culture of Politics: Traditional, Postmodern, Cold-modern, and Warm-modern Ideals of Care. Social Politics: International Studies in Gender, State & Society, 2(3), 331–346. https://doi.org/10.1093/sp/2.3.331
- Huppatz, K. (2009). Reworking Bourdieu’s `Capital’: Feminine and Female Capitals in the Field of Paid Caring Work. Sociology, 43(1), 45–66. https://doi.org/10.1177/0038038508099097
- Kittay, E. F. (1999). Love’s Labor: Essays on Women, Equality, and Dependency. Routledge.
- Kröger, T. (2022). Care Poverty: When Older People’s Needs Remain Unmet. Springer Nature. https://doi.org/10.1007/978-3-030-97243-1
- KSH. (2022). Népszámlálási adatok - A fogyatékossággal élők korcsoport és a fogyatékosság típusa szerint, 1.1.8.1. tábla. [Census data - Persons with disabilities by age group and type of disability, Table 1.1.8.1.].
- Lee, E., Bristow, J., Faircloth, C., & Macvarish, J. (2014). Parenting culture studies. Palgrave Macmillan.
- Lynch, K. (2007). Love labour as a distinct and non-commodifiable form of care labour. The Sociological Review, 55(3), 550–570. https://doi.org/10.1111/j.1467-954X.2007.00714.x
- Mackenzie, C., & Stoljar, N. (2000). Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self. Oxford University Press.
- McLaughlin, J. (2012). Understanding disabled families: Replacing tales of burden and resilience with ties of interdependency. In Routledge Handbook of Disability Studies (pp. 479–491). Routledge. https://doi.org/10.4324/9780429430817-34
- Morgan, D. (1996). Family Connections: An Introduction to Family Studies. Wiley.
- Morgan, D. (2001). Family sociology in from the fringe: The three ‘economies’ of family life. In R. Burgess & A. Murcott (Eds.), Developments in Sociology. Routledge.
- Morgan, D. (2002). Sociological perspectives on the family. In A. Carling, S. Duncan, & R. Edwards (Eds.), Analysing Families: Morality and Rationality in Policy and Practice (pp. 147–164). Routledge & CRC Press.
- Morgan, D. (2004a). Men in Families and Households. In The Blackwell Companion to the Sociology of Families (pp. 374–393). John Wiley & Sons, Ltd. https://doi.org/10.1002/9780470999004.ch22
- Morgan, D. (2004b). Risk and Family Practices: Accounting for Change and Fluidity in Family Life. In E. B. Silva & C. Smart (Eds.), The New Family? (pp. 13–30). SAGE Publications Ltd. https://doi.org/10.4135/9781446218150
- Morgan, D. (2011a). Locating ‘Family Practices’. Sociological Research Online, 16(4), 174–182. https://doi.org/10.5153/sro.2535
- Morgan, D. (2011b). Rethinking Family Practices. Palgrave Macmillan UK. https://doi.org/10.1057/9780230304680
- Morgan, D. (2019). Family Troubles, Troubling Families, and Family Practices. Journal of Family Issues, 40(16), 2225–2238. https://doi.org/10.1177/0192513X19848799
- Nica, A. (2022). Reconceptualising emotional capital and intimacy using a sociological lens: The Authentic Revolution. Emotions and Society, 4(1), 69–89. https://doi.org/10.1332/263169021X16260553458069
- O’Brien, M. (2009). The Impact of Economic, Social, Cultural and Emotional Capital on Mothers’ Love and Care Work in Education. In K. Lynch, J. Baker, M. Lyons, S. Cantillon, J. Walsh, M. Feeley, N. Hanlon, & M. O’Brien (Eds.), Affective Equality: Love, Care and Injustice (pp. 158–179). Palgrave Macmillan UK. https://doi.org/10.1057/9780230245082_9
- Simmel, G. (1994). Bridge and Door. Theory, Culture & Society, 11(1), 5–10. https://doi.org/10.1177/026327694011001002
- Stefanik, K. (2021). Rövid beszámoló az MTA-ELTE Autizmus Szakmódszertani Kutatócsoport (MASZK) munkájáról [Brief report on the work of the MTA-ELTE Autism Methodology Research Group (MASZK)]. Gyógypedagógiai Szemle, 49(4), 295–297. https://doi.org/10.52092/gyosze.2021.4.4
- Tobak, O. (2012). Gondozás és prevenció az autizmussal élő gyermeket nevelő családok körében [Care and prevention among families raising children with autism]. [Unpublished doctoral dissertation]. University of Pécs.
- Tronto, J. C. (1993). Moral Boundaries: A Political Argument for an Ethic of Care. Routledge.
- Volgyesi-Molnar, M., Gyori, M., Eapen, V. et al. (2025). Quality of Life in Hungarian Parents of Autistic Individuals. J Autism Dev Disord, 55, 1122–1137. https://doi.org/10.1007/s10803-024-06243-3
https://doi.org/10.37441/cejer/2025/7/1/15936