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Managing the gap: parental caregiving while co-residing with an autistic adult child, not in education, employment or training
Stockholm University, Faculty of Social Sciences, Department of Social Work.ORCID iD: 0000-0002-7537-9647
Stockholm University, Faculty of Social Sciences, Department of Social Work.ORCID iD: 0000-0002-0458-3544
Stockholm University, Faculty of Social Sciences, Department of Social Work.ORCID iD: 0000-0002-0540-3576
Number of Authors: 32025 (English)In: Journal of Family Studies, ISSN 1322-9400, E-ISSN 1839-3543Article in journal (Refereed) Epub ahead of print
Abstract [en]

Disabled people, including those with autism, are common among those not in education, employment or training (NEET). This leaves caregiving parents to manage a perceived gap between their adult child’s needs and available welfare resources. This study examines how parents provide care in this context, where caregiving is often invisible and unpaid. The research draws on the frameworks of James (1992) and Horowitz (1985), using 20 narratively structured interviews with parents in this caregiving position, which are analysed using an abductive thematic approach. Findings reveal the overarching theme – Managing care to become unneeded: spinning the wheels – where the parents strive to support their adult children’s well-being and independence but face obstacles linked to unsuitable and non-responsive welfare resources. Many parents described their efforts as ‘spinning wheels’ but making little progress. This was commonly explained by a misfit between the services offered and their adult children’s motivation, which had been shaped by their disabilities and past setbacks, making it difficult to seek formal care independently. The study highlights how love and moral obligation influence power dynamics in care relationships and underscores the need to adapt and elaborate theoretical frameworks to capture the complexities of caregiving.

Place, publisher, year, edition, pages
2025.
Keywords [en]
autistic adult children, care theory, Parental caregiving, welfare services
National Category
Social Work
Identifiers
URN: urn:nbn:se:su:diva-246079DOI: 10.1080/13229400.2025.2516429ISI: 001505367000001Scopus ID: 2-s2.0-105007726959OAI: oai:DiVA.org:su-246079DiVA, id: diva2:1993121
Available from: 2025-08-29 Created: 2025-08-29 Last updated: 2025-08-29

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Ljungberg, MalinUlmanen, PetraSilvén Hagström, Anneli

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