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Roles of Caregivers of Autistic Adults: A Qualitative Study
Nancy Bagatell1, Elena Lamarche2, Laura Klinger3
1Nancy Bagatell, PhD, OTR/L, is Associate Professor, Division of Occupational Science and Occupational Therapy, Department of Health Sciences, University of North Carolina at Chapel Hill; nancy_bagatell@med.unc.edu.
Importance:
Understanding the roles of caregivers of autistic adults is important given the increasing number of autistic adults and their ongoing need for various supports.
Objective:
To address the following question: What roles do caregivers enact to support autistic adults?
Design:
This study had a descriptive qualitative design. Caregivers completed a two-part interview. Data analyses included extracting narratives and a multiple-step coding process that resulted in the identification of three main caregiving themes.
Participants:
Thirty-one caregivers of autistic adults.
Findings:
Three main themes that reflected caregiving roles were identified: (1) managing daily living needs, (2) obtaining services and supports, and (3) providing invisible supports. Each theme comprised three subthemes. The roles were enacted regardless of the autistic adults' age, gender, adaptive behavior scores, employment status, or residential status.
Conclusions And Relevance:
Caregivers enacted many roles to support their autistic adult to participate in meaningful occupation. Occupational therapy practitioners can support autistic people across the lifespan in areas such as daily living, leisure, and executive function strategies to decrease the need for caregiving or services. They can also support caregivers as they manage the present and plan for the future. What This Article Adds: This study provides descriptions that illustrate the complexity of caregiving for autistic adults. With an understanding of the many roles that caregivers enact, occupational therapy practitioners can provide services that support both autistic people and their caregivers. Positionality Statement: We recognize that use of person-first versus identity-first language is a source of debate and controversy. We have chosen to use identity-first language, for two reasons. First, studies indicate that person with autism is the term least preferred by autistic people (e.g., Botha et al., 2021). Second, autistic is the term used by the majority of our participants during interviews.
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