Quality of Life and Societal Cost in Autistic Children: An Exploratory Comparative Study Pre- and Post-Diagnosis

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.