Introduction 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.

Methods Participants were 120 maternal and paternal, non-custodial 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.

Results Grandparents expressed most needs in topic areas of information and childcare. No significant relations were found between grandparents’ demographics and perceptions of needs, grandparents’ needs were predicted by their perceived burden.

Discussion The study’s findings can inform practitioners about grandparents’ most and least prioritized needs in various topic areas, which may help practitioners to plan quality family-centered early intervention services, as well as to improve already existing formal support programs offered to grandparents, parents, and preschool teachers. To understand further the unique needs of grandparents of grandchildren with ASD both in Sweden and other cultural contexts, qualitative and longitudinal research is needed to explore the influence of societal factors, grandparents’ demographic characteristics (particularly, gender and lineage) on grandparents’ involvement with their grandchild diagnosed with ASD. In addition, future research needs to develop and use more objective instruments to investigate the longer-term effects of grandchild disability on grandparental functioning.