Quality of Life and Societal Cost in Autistic Children: An Exploratory Comparative Study Pre- and Post-Diagnosis.
After autism diagnosis, families spend the same total money but shift it toward mental-health care and see fewer daily-activity problems.
01Research in Context
What this study did
Researchers tracked Dutch families before and after their child got an autism diagnosis. They looked at bills and quality-of-life surveys for the same kids at both time points. No control group—just the same families compared to themselves.
What they found
After diagnosis, parents reported fewer activity problems—like trouble dressing or brushing teeth. Mental-health visits went up, physical-health visits went down. Total money spent stayed about the same. Quality-of-life scores rose a little, but not by much.
How this fits with other research
Diemer et al. (2023) followed Ontario kids for ten years and saw costs keep climbing—from $4,700 in year one to $33,000 by year ten. The Dutch snapshot shows the very first cost shift; the Canadian data say the bill keeps growing later on.
Sutton et al. (2022) found big losses in daily-living skills after COVID-19 shut services. That looks opposite to the Dutch gains, but the kids in Italy lost therapy while the Dutch kids gained it. Same design, different context—services matter.
Lugo-Marín et al. (2021) also saw small mental-health improvements during lockdown. Again, environment drove the change: less social pressure helped, just like getting proper care helped in the Dutch study.
Why it matters
An autism diagnosis is a doorway, not a finish line. Use it to move dollars from medical to mental-health codes. Schedule OT and speech right away to lock in the activity gains these parents saw. Track bills yearly—today’s small savings can vanish as kids grow, so plan early for the long climb shown in the Ontario data.
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02At a glance
03Original abstract
Previous studies showed an impact of autism on the child's quality of life and societal costs, although little is known about changes from pre- to post-diagnosis. Therefore, our study explored the utilization of health-related services and associated costs in a group of 36 clinically referred Dutch children with autism (aged 2-10 years), pre- and post-diagnosis. Taking a broad societal perspective, we included the child's quality of life, educational needs, and absenteeism in school and leisure activities. Furthermore, we assessed the service utilization in various categories, such as healthcare, youth care, and school guidance. The caregivers, mainly the parents, provided the information. Special needs daycare was the overall major cost driver pre- and post-diagnosis. We found a non-significant decrease in total annual costs (from €6513 to €5060). Post-diagnosis, healthcare costs were halved, changing towards less somatic and more mental healthcare. No shift to adjacent cost categories was seen. At the same time, the child's quality of life improved not significantly from 0.58 to 0.66 (EQ-5D-3L), with significantly fewer everyday activity problems. In addition, we observed a trend of less school absenteeism after the diagnosis. Regression analysis identified pre-diagnostic costs as the sole independent factor influencing post-diagnostic costs, explaining 23% of the variance. Our findings suggest the importance of timely clarification of autism as a foundation for informed intervention and treatment planning. This could potentially result in improved quality of life, appropriate service allocation, and reduced societal costs.
Journal of autism and developmental disorders, 2025 · doi:10.1186/1471-2296-12-133