‘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 caring for autistic children

Studies exploring caring of autistic children often focus on the nuclear family, with little attention to extended relatives. This is especially important in countries like China, where extended households are common. 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”. Each theme also considers individual and family characteristics shaping extended relatives’ willingness to support the family. Central influences included the relatives’ understanding and acceptance of autism, and socio-economic factors. More effort is needed to help extended relatives better understand autism. This may include building on supportive relatives, engaging limited supporters, and addressing negative attitudes to reduce stigma.