OBJECTIVES: Prior research indicates prolonged delays between first parental concern and ASD diagnosis, yet questions remain regarding the diagnostic journey, including characterizing healthcare resource use (HCRU) and costs in commercial healthcare plans. The current study sought to address these informational gaps in the diagnostic pathway.

METHODS: A longitudinal analysis (2015-2019) of 1-18-year-olds was conducted using Optum’s Claims/EHR Dataset. The analysis covered 4 years pre-diagnosis to date of ASD diagnosis. Time from first concern to diagnosis and ASD-related HCRU and costs were examined.

RESULTS: The median delay from first reported ASD-specific clinical feature to diagnosis was 26 months, with ASD-related tests and services starting up to 4 years prior to diagnosis. Pediatricians, psychiatrists, and family medicine were the most common provider types, with office visits and outpatient hospital as most frequent sites of care. Prior to diagnosis, up to 11% of patients were on ASD-related pharmacotherapies. From first reported ASD-related concern to diagnosis, there was a median ASD-related cost per patient of $3,360, with 85% occurring between screening and diagnosis. Median time between first concern and screening was 3.5 months with associated ASD-related costs of $479 per patient ($136 per member per month, PMPM). Median time from screening to diagnosis was 21 months with median ASD-associated costs of $2,881 ($137 PMPM). All costs increased annually over the 4-year period prior to diagnosis.

CONCLUSIONS: Results indicate long delays between first concern and ASD diagnosis and suggest inefficiencies in the diagnostic journey. Tools developed to streamline diagnosis in the primary care setting may reduce these delays. Earlier diagnoses may result in more children gaining access to early interventions, which are linked to improved outcomes (e.g., cognitive abilities, adaptive behavior) and longer-term savings. Limitations include the under-representation of ASD-related expenditures such as school-based services and out-of-pocket costs.