Experiences of Parental Caregivers of Adults with Autism in Navigating the World of Employment.
Parents of adults with autism see their own jobs as both lifeline and respite, yet the daily clash between paycheck and caregiving never lets up.
01Research in Context
What this study did
Researchers talked with parents who still care for their grown sons and daughters with autism. The team asked how these moms and dads juggle paid jobs and daily caregiving.
Parents shared stories in open interviews. The study did not test a treatment. It mapped the daily tug-of-war between earning money and giving care.
What they found
Work is both a must and a break. Parents need the paycheck to survive. They also say the workplace is their only place to breathe.
Yet every shift brings guilt. A call from home can mean a meltdown, a fired caregiver, or an empty fridge. The conflict never stops.
How this fits with other research
Herrema et al. (2017) surveyed 120 families and found most worry weekly about who will help when they cannot. The new interviews add the parent voice: the worry starts at breakfast, not in some distant future.
Andrews et al. (2024) show only about one in three autistic adults has a job. That number explains why parents keep working; their child’s income is too low to pay rent.
Menezes et al. (2025) found the job gap starts early—just 22% of autistic teens work. Together the papers trace a straight line: low teen employment leads to low adult employment, which locks parents into lifelong financial and caregiving roles.
Why it matters
If you write transition plans, add parent job support. Ask: “What shift works for Mom?” or “Can Dad tele-work during the first month of employment?” A small schedule tweak can keep the family’s main income safe while the adult child trains for work. You can also push for evening respite slots so parents don’t burn annual leave on every caregiver no-show.
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02At a glance
03Original abstract
PURPOSE: Caregiving often presents challenges for parents, particularly for parents of loved ones with disabilities or health challenges, who need and/or want to be employed. This study describes the employment experiences of aging parents as they continue to balance engagement in the paid workforce with the ongoing provision of care for their adult children with autism spectrum disorder (ASD). The purpose of this study was to examine the lived experiences of parents of adult children with ASD in the context of balancing career and caregiving responsibilities. METHODS: The current study uses a qualitative phenomenological research approach to describe the lived experiences of 51 parents who were caring for an adult child with ASD. The parents participated in telephone interviews to obtain information about their career experiences while providing care and support to their adult children with ASD. RESULTS: Three caregiving themes emerged including: (a) difficulty balancing caregiving with work responsibilities, (b) reasons for working, not working, or working intermittently, and (c) work as an escape or wanting to work more. CONCLUSION: As more individuals with ASD reach adulthood, often relying to varying extents on their families for daily support, parental employment will continue to be impacted as they juggle their career with caregiving responsibilities. Economically, one or more family members typically need to work to sustain the family's needs and employment support should be considered. As a society, families often need to make choices even with an adult child with ASD of who will work, how, and when.
Journal of autism and developmental disorders, 2025 · doi:10.1080/02739615.2020.1810576