‘They are vital cogs in the family system’: perspectives of Chinese parents and service providers on the role of grandparents and other extended relatives in the care of autistic children

Studies exploring caring of autistic children tend to focus on the nuclear family. Relatively little is known about the role of extended family members. This is especially important in countries like China, where family support is highly valued and families often live in extended family households. We used semi-structured interviews with 16 Chinese parents of autistic children from diverse educational and income backgrounds and focus group discussions with 11 service providers, to explore their perspectives of the role of extended relatives in the care of autistic children. Using template thematic analysis, we developed three themes: (1) Unambiguous active support from extended relatives: “my siblings and parents always remind me to take good care of my child”; (2) Complex or ambivalent support: “when it comes to grandparents, things can get complicated”; (3) Disengagement in care or stigmatising attitudes: “I felt they didn’t see my son as worthy”. Extended relatives’ supportive or unsupportive roles were perceived to be linked with the timing of a child’s diagnosis, early intervention opportunities, parents’ social and mental well-being, and family functioning. Each theme also considers the underlying individual and family characteristics that may influence the extended relatives’ willingness to support the autistic children and their parents. More effort is needed to help extended relatives better understand autism. This may include building on support from relatives who were already helpful, turning limited supporters into active partners, and addressing negative attitudes to reduce stigma; targeted support is especially needed for families from lower socioeconomic backgrounds.