Leisure, employment, community participation and quality of life in caregivers of autistic children: A scoping review.
Parents of autistic kids lose work, sleep, and leisure time—build respite and sleep goals into every behavior plan to keep families afloat.
01Research in Context
What this study did
Davy et al. (2022) read every paper they could find on how caring for an autistic child shapes the parent’s own life.
They looked at work hours, hobbies, sleep, social outings, and overall happiness.
The team mapped what we know and where the gaps are.
What they found
Parents often quit jobs, skip sports leagues, and drop friends to meet therapy schedules.
Less personal time means lower quality of life across the board.
Few studies test ways to give parents their time back.
How this fits with other research
Sasson et al. (2018) show moms of school-age kids with ASD leave the workforce at double the usual rate.
Dyches et al. (2016) find that using respite care lifts moms’ mood and cuts depression risk.
Lovell et al. (2021) and Lee et al. (2023) add that poor sleep is the daily engine behind health problems and next-day frustration.
Together these papers extend Gemma’s map: employment loss and sleep loss are measurable steps on the road to poor caregiver well-being.
Why it matters
If parents have no work, no sleep, and no fun, they burn out and therapy gains stall.
Add one caregiver goal to every behavior plan: protect one hour of parent time per week.
Offer respite vouchers, flex scheduling, or sleep-hygiene coaching.
A parent who keeps a job or a yoga class stays in the game longer and delivers better treatment fidelity.
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02At a glance
03Original abstract
We searched a wide range of academic journals for published information on the participation levels of caregivers of autistic children in activities relating to leisure, social, community and employment contexts, and the impact that participation may have on caregiver quality of life. Overall, we found that the impact of parenting an autistic child is broad with caregivers often prioritising their child's needs over their own, particularly in occupational participation, which impacts their quality of life. Findings also highlighted a need for further research to investigate the experience of caregivers, and the relationship between participation and quality of life in caregivers of autistic children, as the results can inform the development of better supports for them.
Autism : the international journal of research and practice, 2022 · doi:10.1177/13623613221105836