When Care Becomes a Life: Role Engulfment and Caregiver Irreplaceability Among Family Caregivers of Autistic People in China

Abstract This qualitative study examines how long-term family caregiving for autistic people can become concentrated in one person and reshape that caregiver’s identity and participation. Semi-structured interviews with 13 primary family caregivers recruited through an autism support center in China were supplemented by two months of participant observation. Thematic analysis identified three overlapping experiences of role engulfment: loss of self, deferred self, and limited preservation of self. Across accounts, the primary caregiver’s perceived irreplaceability developed through uneven family divisions of care, employment and financial constraints, and the accumulation of individualized knowledge about an autistic family member’s support needs. Daytime and age-limited services offered valued assistance but often left families responsible for continuity of support, particularly as autistic people approached adulthood. Three caregivers entered paid work as autism support assistants, gaining income and social contact while continuing unpaid care at home. These findings suggest that support planning should attend to caregivers’ opportunities for roles beyond caregiving, distribute practical knowledge among trusted supporters, and improve continuity of individualized services across the life course. The proposed process requires examination in more diverse family and service settings.