“I've grown”: Parent's reflections and familial support

Abstract

AbstractObjectiveWe examined the perceived familial support of parents of children with autism spectrum disorder (ASD) to better understand the assistance and gaps they experienced.BackgroundPrevious literature indicated various forms of support, including spousal, extended family members, and siblings. However, limited research considered the support parents experienced from their child with ASD.MethodUsing a qualitative methodology involving semistructured interviews, the team interviewed nine parents who had children with ASD.ResultsAlthough most extended family members were seen as supportive, some held a lack of understanding of ASD, posed questions, or made comments that the children were “spoiled.” Mothers often took on the role of “educator.” The sibling(s) helped with caregiving, but also had their own life experiences to deal with. Regarding the support that the child with ASD provided, parents explained that they had grown into a better person. They were more aware of the challenges other parents faced and held less judgements of others.ConclusionOverall, parents noted differing familial support needs based on their families' understanding of ASD. They valued the support the child with ASD provided and recognized how they had grown as a person.ImplicationsPractitioners must continue to learn how to better understand families' experiences and recognize that each family member has differing support roles.