Peer-reviewed article
Between neuroaffirmation and access: Parents' experiences of autism caregiving in England.
Farooq A, Mason R, Sclafani V, Kargas N ·
Summary
Written by AI, not yet AICS's view · claude-haiku-4-5-20251001This study examined how 12 caregivers in England experience raising autistic children, looking at how caregiving demands, access to services, and cultural contexts affect family well-being. The research found that families face intensive, constant care needs alongside fragmented service systems, with cultural and religious beliefs shaping how families seek help. Some families adopted a 'neuroaffirmation' approach that reframed autism positively, which helped build resilience despite structural barriers.
Key points
- Caregiving for autistic children involves 24/7 demands that intersect with fragmented service systems
- Cultural, religious, and gendered norms significantly shape caregiving roles and help-seeking behaviours, particularly in ethnic minority families
- Families struggle to navigate and access coordinated support services
- Neuroaffirmation—viewing autism as a difference rather than a deficit—emerged as a protective and identity-affirming response for some families
- Family quality of life is shaped by the interaction of caregiving intensity, service access, and sociocultural contexts
Limitations
This is a small qualitative study with 12 caregivers and cannot provide generalizable statistics about the prevalence of challenges or the effectiveness of specific interventions. The research describes experiences and themes but does not evaluate whether any particular support service or intervention improves outcomes.
Abstract
Despite growing recognition of the challenges faced by families of autistic children in the United Kingdom, existing research has largely focused on parental stress and individual burden, with comparatively limited qualitative attention to how caregiving demands, service systems, and sociocultural contexts interact to shape family quality of life. Addressing this gap, the present study explored caregivers lived experiences of raising autistic children in England, examining how caregiving demands, access to support, and adaptive responses operate within broader family and systemic contexts to influence family quality of life. Semi-structured interviews were conducted with 12 caregivers of autistic children from diverse ethnic backgrounds, including both White British and ethnic minority backgrounds families, and analysed using reflexive thematic analysis. Six interrelated themes were identified that characterised families' experiences: (1) The 24/7 Care Ecology; (2) Culture, Religion, and Gender as Contextual Amplifiers (3) Building (and lacking) the Social Support Architecture; (4) Fighting the System(s); (5) Adaptive Resilience and Neuroaffirmation; and (6) Family Quality of Life Consequences. Findings illustrate how intensive and ongoing caregiving demands intersect with fragmented service systems and sociocultural expectations, particularly where cultural, religious, and gendered norms shaped caregiving roles and help-seeking. Notably, neuroaffirmation emerged as a protective and identity-affirming response for some families, reframing caregiving beyond deficit-oriented narratives and contributing to resilience within structurally constrained environments. These findings highlight the need for more accessible, coordinated, and family-centred autism support services that recognise the diverse contexts in which caregiving takes place.