The many roles of aging caregivers of adult children with autism

By Christina N. Marsack-Topolewski

As children diagnosed on the autism spectrum disorder (ASD) continuum age and move from childhood to adolescence and then to adulthood, their caregiving needs change but typically remain the responsibility of their primary caregivers, their parents. Depending on the severity of the ASD, their needs may range from minimal input, such as social coaching, to complete care for all of their daily physical, social, and emotional needs.

The purpose of the study was to compare three types of caregivers regarding their perceptions of the level of care needed by their adult children with ASD. This research is relevant to caregiving adults with ASD in the here and now as many caregivers assume roles when caring for more than one loved one. Providing care for multiple care recipients, often family members, changes the needs of caregivers. The three types of caregivers are (a) parents who are providing care solely for their adult child with ASD, (b) parents who are providing care for their adult child with ASD and another typically developing child, and (c) parents who are providing care for their adult child with ASD and another adult with a disability (usually a family member). Activities of daily living (ADLs) encompass daily tasks that people perform as a part of their activities (bathing, dressing, eating, participating in community activities, making their bed, cooking, managing money, etc.). The ADLs are divided into two types, basic and instrumental. Basic ADLs are generally completed daily, with instrumental ADLs done either daily or sporadically.

The findings of the paper highlighted that caregivers who had a typically developing child in addition to an adult with ASD were more likely to perceive their adult child was more independent in completing both basic and instrumental ADLs. The parents who were caring for only the adult child with ASD and those who were caring for another family member with a disability in addition to the adult with ASD reported their adult children with ASD needed more help to function on a daily basis. As the adult children with ASD were generally between 18 and 25 years of age, it could be assumed the typically developing child was a teenager and capable of helping provide care for their sibling with ASD.

Implications for providers: Health care workers, educational professionals, and social workers can play an important role in supporting adults with ASD and their aging caregivers. These professionals should be aware of changing family roles and caregiving responsibilities (e.g., when an elderly family member becomes ill). Professionals should be aware of and consider the functional status of adults with ASD and the role of functional status on parents. They also can advocate, when able, for appropriate services, such as respite care and help navigating complex support networks to support adults with ASD and their families. Support should be provided to connect families with services. As more individuals with ASD age into adulthood, their parental caregivers are also aging. These caregivers, especially as they assume multiple caregiving roles, should be the focus of additional attention in helping support adults with ASD.

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Article Details
Comparison of Perceptions of Activities of Daily Living of Adult Children with Autism Among Three Groups of Aging Caregivers
Christina N. Marsack-Topolewski
First published online June 22, 2022
DOI: 10.1177/07334648221111392
Journal of Applied Gerontology

About the Author

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Christina N. Marsack-Topolewski, PhD, LMSW, is an associate professor of Social Work in the College of Health and Human Services at Eastern Michigan University in the United States. She has 20 years of experience working with individuals with developmental disabilities, including those with autism spectrum disorders, and their families. In 2019, she was appointed to the National Task Group on Intellectual Disability and Dementia Practices where she serves as a board member and committee co-chair. Dr. Marsack-Topolewski’s research interests reside in examining aging, caregiving, and developmental disabilities. Her goal is to promote greater understanding of the experiences and realities of aging caregivers of individuals with developmental disabilities, including those with autism spectrum disorder.