Impact of Caregiver Burden on Quality of Life for Parents of Adult Children With Autism Spectrum Disorder.
Helping with daily tasks and paying for services are the top two reasons parents of adults with autism feel their own lives are worse.
01Research in Context
What this study did
The team asked 81 parents of adults with autism to fill out a survey. They wanted to know which parts of caregiving hurt the parents' own quality of life the most.
Parents rated how much they help with daily tasks like cooking, money, and doctor visits. They also answered how these duties affect their mood, health, and free time.
What they found
Two burdens stood out: helping with daily living skills and paying for services. The more parents did either, the lower their quality of life dropped.
Other stresses, like paperwork or transport, mattered less. Developmental and money burdens were the strongest predictors of poor well-being.
How this fits with other research
Adams et al. (2025) saw the same pattern in parents of young kids. Daily stress and child severity hurt life quality, while coping skills and income helped.
Werner et al. (2013) added that feeling stigmatized also drags caregivers down. Reyes et al. (2019) now show the damage peaks when the child becomes an adult and costs rise.
Gandhi et al. (2022) flip the lens: autistic adults themselves report lower life quality when stress is high. Together the papers trace a loop—parent stress and adult-child stress feed each other.
Why it matters
If you serve adults with autism, screen parents for money worries and daily-living help they still provide. Link them to waiver funds, respite, or SSI planners. Cutting one big bill or adding one weekend respite can raise parent well-being faster than general counseling.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Add one question about unpaid bills or rent stress to your caregiver intake and have a local waiver contact ready to share.
02At a glance
03Original abstract
This study sought to examine the impact of time, developmental, emotional, and financial burdens on the quality of life (QOL) for parents (aged 50+) of an adult child with autism spectrum disorder (ASD). Participants ( N = 320) completed a web-based survey and could indicate interest in participating in one-on-one follow up interviews. Multiple linear regression analysis indicated that two variables, developmental burden and impact of caregiving on finances, were statistically significant predictors of parents' QOL. Developmental burden was the strongest predictor of parental QOL, demonstrating an inverse relationship. Qualitatively, reported findings indicated that many parents were experiencing all four burdens. Findings highlighted the need to provide services and supports to alleviate burden among aging parents of adult children with ASD.
American journal on intellectual and developmental disabilities, 2019 · doi:10.1352/1944-7558-124.2.145