A Good Life

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Abstract

Autism Spectrum Disorder (ASD) is a lifelong disorder, occurring globally. It often requires supported living, usually with parents as the caregivers. Researchers have described parent caregiver stress, worry about the future, and difficulty accessing resources, yet a focus on a desired future is missing from the literature. The purpose of this paper is to discuss the results of a qualitative study exploring parent’s considerations and hopes for their autistic adult child’s later life. After IRB approval, parents of an adult child with an ASD were recruited via purposive sampling. Data saturation was reached after interviews with ten mothers and four fathers from the mid-Atlantic region of the United States. All interviews were virtual. Audio transcripts were verified prior to coding. Content analysis yielded several themes. Results showed that parents wished for “a good life” for their adult child with ASD. Parents hoped their adult child would be engaged with others and have meaningful activities. Alongside the aspirational positive focus, an additional theme was “worry, love and loss,” including parental worry about who would engage with and eventually care for their child. Implications: Healthcare providers and policymakers are charged with listening to families affected by autism and should work to help plan for and ensure an engaged late life for individuals with autism, while recognizing the inherent anticipatory loss. The paper concludes that parents of adult children with autism have a vision for their child’s late life that has meaning. Research is needed to understand best practices to support such a future.