Aging & Social Change: Twelfth Interdisciplinary Conference

Abstract

Global incidence of an Autism Spectrum Disorder (ASD) is 1:160, with rates as high as 1:54 in the US. ASD is a heterogeneous lifelong disorder often requiring supported living, most commonly with parents. Little is known about how parents and adult children with an ASD navigate end of life and grief. This paper discusses the results of a qualitative study exploring parent’s considerations of late life for themselves and their adult child After IRB approval, purposive and snowball sampling were employed. Data saturation was reached with a sample of ten mothers and four fathers from the mid-Atlantic US. Participants were interviewed via Zoom, answering prompts such as: “When you think about your child getting older, what do you think about?” Researchers verified audio transcripts and used content analysis to code key words and generate themes. The main subtheme was ‘love and loss.’ Parents grappled with how their child would be understood and manage after they died. Elements of anticipatory loss present were worry, sadness and gratitude; themes previously existing in the anticipatory loss literature. Worry prompted a variety of responses ranging from approach to avoidance. Parents of adults children with an ASD experience anticipatory loss on behalf of their child. Healthcare providers and policy makers must begin to help these families prepare for smooth transitions of care in safe and secure housing scenarios, while at the same time help family members manage anticipatory loss and eventual grief. More research exploring best practices in this area are deeply needed.