Date Presented 04/06/19
Most adults with autism spectrum disorder (ASD) need continued support to live in the community, yet little is known about the roles of unpaid caregivers. Caregivers of 31 adults with ASD were interviewed. Caregiver roles included 1) meeting and managing daily needs; 2) obtaining services and supports; and 3) providing support when needed. The results, which have policy and service implications for OT, highlight the multiple caregiving roles these aging caregivers enact.
Primary Author and Speaker: Nancy Bagatell
PURPOSE: The purpose of this study was to explore the caregiving support provided to adults with autism spectrum disorder (ASD). The main research question this study addressed was: What roles do caregivers of adults with ASD enact to support their adult child? While there is a robust literature regarding caregiving experiences of parents of children with ASD (e.g., DePape & Lindsay, 2015), relatively little research has focused on caregivers of adults with ASD. As individuals with ASD become adults, they often require support to live as independently as possible. Often this support comes from unpaid caregivers, such as parents. The scant literature related to caregivers of adults with ASD has focused primarily on coping (e.g.,Hines, Balandin, & Togher, 2014) and self-efficacy and burden (e.g., Burke & Heller, 2016). However, it is important to understand what caregiving actually entails so that adequate supports are available to adults with ASD when their caregivers are no longer able to carry out their caregiving roles.
DESIGN: This qualitative study was descriptive in nature. The participants, individuals who identified as unpaid caregivers, mainly parents, for 31 adults (23 male, 8 female) ranging in age from 27-31 and functioning levels across the spectrum, were recruited as part of the second phase of a larger study investigating outcomes of adults with ASD. These caregivers, from around the state of North Carolina, were from diverse racial and socioeconomic backgrounds.
METHOD: Caregivers completed a two-part interview comprised of the Vineland Adaptive Behavior Scales (3rd edition) Parent/Caregiver interview, and a semi-structured, open-ended interview. The Vineland provided information about daily living, social, and communication skills; parents were encouraged to elaborate and share stories. The semi-structured interviews, which lasted 30-60 minutes, focused on hopes for the future, service utilization, and planning for the future. Interviews were recorded. The semi-structured interviews were transcribed verbatim; comments from the Vineland interview were summarized and sections identified as “a good story” were transcribed. Following each interview, reflexive memos were written by the interviewer; in this memoing process, the theme of caregiving emerged. Data analysis involved reading transcripts, coding, grouping codes into categories, and recoding to confirm categories. In addition, ongoing discussions with the research team occurred periodically to further refine and confirm the codes and categories.
RESULTS: Three main categories of caregiver roles, each with subthemes, were identified: 1) meeting and managing daily needs; 2) obtaining services and supports; and 3) providing supports when needed. While caregivers did not convey a strong sense of burden, some expressed fatigue and concern regarding their own health status. Looming large for these caregivers was the question: “Who will do these things when I am no longer able to?”
CONCLUSION: Caregivers of adults with ASD enacted many roles on a regular basis to promote the quality of life for their adult child. These finding have implications for service provision and policy as adults with ASD move into middle adulthood and their aging caregivers can no longer provide the same level of support. Additionally, these findings highlight the need for occupational therapists to address independent living skills and community participation for individuals with ASD across the life span to decrease the level of support needed.
References
Pape, A., & Lindsay, S. (2015). Parents’ experiences of caring for a child with autism spectrum disorder. Qualitative Health Research, 25(4), 569-583. Doi: 10.1177/1049732314552455
Hines, M., Balandin, S. & Togher, L. (2014). The stories of older parents of adult sons and daughters with autism: A balancing act. Journal of Applied Research in Intellectual Disabilities, 27, 163-173. Doi:10.1111/jar.12063
Burke, M. & Heller, T. (2016). Individual, parent and social-environmental correlates of caregiving experiences among parents of adults with autism spectrum disorder. Journal of Intellectual Disability Research, 60, 401- 411. Doi: 10.1111/jir.12271
