Juggling Multiple Roles: The Experience of Caregivers of Adults with ASD

Background: Most adults with autism spectrum disorder (ASD) require support to live as independently as possible. This support often comes from unpaid caregivers, such as parents. While there is a robust literature regarding caregiving experiences of parents of children with ASD, relatively little research has focused on caregivers of adults. The scant literature has focused largely on coping and burden, with little attention to what caregivers actually do.

Objectives: The objective of this study was to explore caregiving for adults with ASD to inform service delivery and policy. The main research question this study addressed was: What roles do caregivers of adults with ASD enact to support their adult child? In essence, what does caregiving actually entail?

Methods: This descriptive qualitative study was part of the second phase of a larger study investigating outcomes of adults with ASD. The participants were individuals who identified as unpaid caregivers for 31 adults (ages 27-51) (see Table 1). Data were collected using a two-part interview comprised of the Vineland Adaptive Behavior Scales (2^nd edition) Parent/Caregiver interview and a semi-structured interview. Interviews were recorded and transcribed. The semi-structured interviews, which lasted 30-60 minutes, focused on hopes and plans for the future and service utilization while the Vineland provided qualitative information about everyday life. Following each interview, reflexive memos were written; in this memoing process, the theme of caregiving emerged. The data analysis process, which involved multiple people, included reading transcripts, coding, grouping codes into categories, and recoding to confirm categories. Through ongoing discussions, themes were confirmed with members of the research team not involved in the coding process.

Results: Three main categories of caregiver roles, each with subthemes, were identified: 1) meeting and managing adult child’s daily needs through planning social activities and assisting with basic self-care and instrumental activities of daily living; 2) obtaining services and supports by advocating and navigating systems; and 3) providing supports by being a culture broker, coach, and life line when the unexpected occurred. All caregivers carried out these roles to some degree regardless of the adult child’s IQ, sex, and adaptive behavior skills. Caregivers whose adult children lived independently and those whose children lived in residential settings continued to carry out many roles. While caregivers did not convey a strong sense of burden, some expressed fatigue and concern regarding their own health status. Looming large for all caregivers was the question: “Who will do these things when I am no longer able?”

Conclusions: Caregivers of adults with autism across the spectrum enact many roles on a regular basis to promote the quality of life for their adult child. The findings have implications for service provision and policy. First, services should focus on increasing independence through daily living skills and self-advocacy interventions for individuals with ASD across the life span. Second, support should be provided to caregivers so that they can engage in role release to enhance their quality of life as they age and to provide peace of mind regarding their adult child’s future.