Caregivers described raising autistic children as an intensive, enduring responsibility that permeated daily routines, family identity, and long-term plans. Across interviews, parents recounted practical tasks, emotional labour, and substantial administrative work associated with coordinating services and managing care. This continuous demand was framed as a pervasive ecology of care rather than a series of discrete episodic challenges. Participants highlighted how caregiving altered personal roles and priorities, constrained employment and leisure, and required constant vigilance, planning, and adaptation.
Interviewees emphasised that sociocultural factors shaped how families made sense of autism and distributed caregiving responsibilities. Gender norms frequently positioned mothers as primary carers, amplifying the burden for female participants. Cultural and religious contexts influenced stigma, help-seeking behaviours, and who in the extended family offered support. Several caregivers from ethnic minority backgrounds reported additional barriers linked to representation, language, and culturally specific expectations, noting that these contextual amplifiers affected interactions with professionals and willingness to access services.
Informal supports — from partners, extended family, and peers — and formal supports — from charities and professional services — were repeatedly named as critical to families’ coping. Where social networks and community resources were available, caregivers reported reduced isolation and improved wellbeing. However, many described gaps: support could be inconsistent, withdrawn following diagnosis, or difficult to access. Charities and peer groups provided valuable forms of validation and practical advice, but participants emphasised uneven availability and variable cultural fit of services.
A persistent theme was the amount of advocacy and effort required to navigate fragmented health, education, and social care systems. Caregivers described lengthy processes to access assessments, specialist input, and educational accommodations. Professional attitudes, resource constraints, and administrative complexity were cited as recurring obstacles that required families to become persistent advocates. This ‘fight’ for services consumed time, emotional energy, and often financial resources, further compounding caregiving pressures.
Despite systemic constraints and high burden, participants also described adaptive strategies and strengths. Many caregivers reported relational growth, enhanced family bonds, and meaning-making as part of their experience. Importantly, some families adopted a neuroaffirmation stance — reframing autism away from deficit-focused narratives and toward identity-affirming, strength-based perspectives. This reframing functioned as a protective resource for wellbeing, supporting coping and resilience within environments that remained structurally constrained. Problem-focused coping combined with social support seeking was associated with more positive outcomes in the accounts collected.
Caregiving demands, uneven access to support, and sociocultural amplifiers coalesced to shape family quality of life (FQoL). Participants reported impacts across finances (income loss, employment disruption), physical and mental health, couple and family relationships, and social participation. The study linked lower FQoL to higher child support needs, co-occurring conditions, behavioural challenges, and socioeconomic disadvantage. Stigma and social judgment were additional external stressors that reduced wellbeing and constrained opportunities for social integration.
The study used purposive and snowball sampling to recruit caregivers of autistic children across England who had completed an initial survey. Twelve caregivers (ten female, two male), aged 30–46, participated in online or in-person semi-structured interviews lasting 60–90 minutes. Seven caregivers identified as from ethnic minority backgrounds. Interviews were transcribed and analysed using reflexive thematic analysis from a constructionist perspective. The research team maintained a reflexive audit trail and reported positionality practices; community stakeholders were involved across research stages.
Findings underscore the need for more accessible, coordinated, and family-centred autism support that attends to cultural and gendered contexts. Service models that reduce administrative burden, improve consistency of social support, and recognise strengths-based, neuroaffirming perspectives may support family resilience. The authors highlight the limitation of deficit-only framings and recommend interventions that address both systemic access issues and the positive dimensions of caregiving.
Interview transcripts are deposited under restricted access at the University of Lincoln Repository in line with ethical approvals; access requests can be made via the repository or the University Research Governance Office. Ethical approval was granted by the University of Lincoln Research Ethics Committee (ref: UoL2024_17776). Participants received recognition for their time and community involvement was reported using GRIPP-2 procedures.
Caregiving for autistic children in England was characterised by intensive day-to-day demands intersecting with fragmented systems and sociocultural influences. While these pressures negatively affected family quality of life in multiple domains, neuroaffirmation and adaptive coping emerged as important protective resources for some families. The study calls for coordinated, culturally sensitive supports that reduce systemic barriers and acknowledge both the burdens and adaptive strengths experienced by caregivers.