Abstract
Purpose
Caregiving often presents challenges for parents, particularly for parents of loved ones with disabilities or health challenges, who need and/or want to be employed. This study describes the employment experiences of aging parents as they continue to balance engagement in the paid workforce with the ongoing provision of care for their adult children with autism spectrum disorder (ASD). The purpose of this study was to examine the lived experiences of parents of adult children with ASD in the context of balancing career and caregiving responsibilities.
Methods
The current study uses a qualitative phenomenological research approach to describe the lived experiences of 51 parents who were caring for an adult child with ASD. The parents participated in telephone interviews to obtain information about their career experiences while providing care and support to their adult children with ASD.
Results
Three caregiving themes emerged including: (a) difficulty balancing caregiving with work responsibilities, (b) reasons for working, not working, or working intermittently, and (c) work as an escape or wanting to work more.
Conclusion
As more individuals with ASD reach adulthood, often relying to varying extents on their families for daily support, parental employment will continue to be impacted as they juggle their career with caregiving responsibilities. Economically, one or more family members typically need to work to sustain the family’s needs and employment support should be considered. As a society, families often need to make choices even with an adult child with ASD of who will work, how, and when.
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The PI of this study received support for this project from Eastern Michigan University’s College of Health and Human Services Research Award.
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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 Wayne State University’s Institutional Review Board.
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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.
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We dedicate this article to June Ann Cline, who served as a consultant for this manuscript and many more. June passed away shortly before this article was accepted for publication. She has been a long-time editor, mentor, and friend. Her kindness, patience, and love inspired many, and she will be dearly missed. Her legacy will include the clients she mentored and trained from her home office in Warren, Michigan. She was a brilliant mind who embodied love as described in 1 Corinthians 13:4–8.
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Marsack-Topolewski, C.N., Samuel, P.S. Experiences of Parental Caregivers of Adults with Autism in Navigating the World of Employment. J Autism Dev Disord (2024). https://doi.org/10.1007/s10803-024-06381-8
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DOI: https://doi.org/10.1007/s10803-024-06381-8