“I worry about his future!” Challenges to future planning for adult children with ASD

Abstract

The aging process for parental caregivers of adult children with autism spectrum disorder (ASD) can be complicated and filled with worry about the unknown. This qualitative phenomenological study examined concerns and barriers of these parents that could inhibit their future planning. One-on-one interviews were conducted with 51 parents of adult children with ASD. Parents were older than age 50 years and their children were older than age 18 years. During the interview process, parents discussed future-oriented concerns related to their adult child’s care. Based on results of the content analysis from interview responses, four themes emerged from interview responses related to parents’ fears for the future, including difficulty identifying caregiving support for the future, barriers to making plans/decisions, fear of the unknown, and feeling the need to make plans and decisions now. Although many parents understood that plans for the future were needed, they often experienced difficulty in initiating the process. Some of their concerns caused stress that further inhibited their planning. To assist parents in planning, social workers need to be educated regarding parents’ unique needs to help them work through the planning, separate planning into manageable pieces, and provide support at each step of the process.

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