“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.

KEYWORDS:

• Adults with autism spectrum disorder
• aging caregivers
• future planning

Compliance with Ethical Standards

Ethical approval: All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional and/or national research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. All procedures performed in this study involving human participants were in accordance with the ethical standards of the Wayne State University Institutional Review Board.

Informed consent: For the web-based study, the use of an electronic survey program precluded the use of an informed consent form. In its place an information sheet that required the participant to indicate that he/she agreed to participate was used. At the end of this web-based survey, participants were informed that a follow up interview would be conducted with interested participants. Participants could indicate whether they would be interested in sharing more information regarding their experiences. For participants interested in sharing more information, they were asked to select yes and leave their name and contact information. An email was sent to participants that indicated interest in participating in the follow up interview. In the email sent and in the interview script read at the beginning of the interviews, participants were notified that interviews could be recorded and that the recorder could be stopped at any time.

Disclosure statement

No potential conflict of interest was reported by the authors.