Siblings' current and future involvement in the lives of autistic adults

Abstract Objective The goal was to describe adult siblings' and service providers' perspectives regarding siblings' current and future involvement in the lives of autistic adults. Background Service providers often support families of autistic adults to prepare for the future, but they seldom include adult siblings in the future planning process. Despite frequently assuming supportive roles, little is known about adult siblings' roles in autistic adults' lives. Method We conducted focus groups and individual interviews with 13 adult siblings (ages 21–58) and 17 service providers serving autistic adults and/or their families. Interviews were systematically coded and analyzed using thematic analysis. Results Adult siblings assume a variety of roles in autistic siblings' lives and expect continued or increased involvement in the future, but they lack clarity regarding future roles. Adult siblings and providers emphasize the importance of adult siblings' involvement in future planning. Although adult siblings desire earlier involvement, providers hesitate to proactively involve adult siblings in future planning due to uncertainty about adult siblings' willingness to provide support. Conclusions Considering the whole family and supporting adult siblings in family future planning may increase service providers' engagement with adult siblings, thereby improving outcomes for both adult siblings and autistic adults. Implications Service providers should proactively support adult siblings' involvement in family future planning in collaboration with autistic individuals and other family members.