Background / Research question: The presence of grandparents in a family with a young child with ASD can alleviate demands that parents and siblings may experience by providing necessary support to their adult children and to their grandchild with ASD. Yet, little is known about needs these grandparents may have in family and community settings. This study investigated perceived needs of grandparents in relation to their preschool-aged grandchildren diagnosed with ASD in the cultural context of Sweden.

Method: Participants were 120 maternal and paternal grandparents of children enrolled into psychoeducation intervention programs provided by the Autism Center for Small Children at the Habilitation & Health (funded publicly by the Stockholm County Council). Data were collected at four psycho-educational workshops using the demographic survey, the Grandparents’ Needs Survey, and the impact supplement to the Strength and Difficulties Questionnaire – the Swedish version.

Result: Grandparents expressed most needs in topic areas of information and childcare. No associations were found between grandparents’ demographics and perceptions of needs; grandparents’ perceptions of grandchild’s difficulties influenced their information needs. 

Conclusions: The study provides valuable information on how to improve already existing support programs for children with ASD and their family members, and to facilitate better planning of future support services based on identified needs.