Between neuroaffirmation and access: Parents’ experiences of autism caregiving in England

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.