The rise of high-cost autism claims 

Autism diagnoses have surged dramatically over the past two decades, and with them the financial impact on employer-sponsored health plans. Claims for individuals with autism may exceed $250,000 year after year, with some now exceeding $1 million annually. For employer health plan sponsors, this trend presents complex challenges that go beyond traditional cost management.

Why are high-cost autism claims rising?

Autism Spectrum Disorder refers to a group of conditions marked by challenges with social skills, communication and repetitive behaviors. According to the Centers for Disease Control and Prevention, since 2000, ASD diagnoses have increased roughly fivefold, with recent data showing 1 in 31 children diagnosed by age 8. This rise naturally leads to more claims. But what makes these claims so costly?

The intensity and duration of care contribute to high claim costs, with additional challenges stemming from pricing variability and inconsistent access to, and utilization of, in-network providers. Applied Behavioral Analysis therapy, the most common evidence-based treatment for autism, varies by age and condition severity, ranging from 15-25 hours a week with 30-40 hours for the most severe cases.

What our data is telling us

In an analysis of autism-related claims data from Mercer’s book of business (based on over 1.1 million lives), we found that members with $200,000 or more in annual claims accounted for 16% of total autism expenditures in 2024, up from 9% in 2023. Notably, a greater percentage of these high-cost claims involved out-of-network providers. In 2024, among members with $15,000 or less in total allowed claims, the percentage of claims attributed to in-network providers ranged from 85%-91%. However, among those with $200,000 or more in annual claims, we found much lower in-network utilization, ranging from just 35%-70%. The use of out-of-network providers can drive up costs and complicate care coordination.

Further, our analysis found that allowed charges per hour varied widely, from $78 to over $600, and the number of hours billed per patient annually ranged from 6 to 780. This degree of inconsistency complicates cost forecasting and risk management.

Balancing cost control with quality and compliance

Plan sponsors should develop standardized practices for monitoring, reviewing and managing high-cost medical claims across all conditions, including autism, to understand potential ongoing risk to the plan. Monitoring plan service providers is fundamental, providing a way to verify that insurers or administrators are:

• Using best practice standards
• Offering adequate provider networks and encouraging their use
• Implementing procedures to detect and prevent fraud
• Consistently following plan terms

Periodically reviewing the plan coverage, and providing employees and their families with care navigation, advocacy and education resources may be appropriate.

Plan sponsors must also ensure that the plan’s ASD benefit strategy complies with all applicable laws. For example, the Mental Health Parity and Addiction Equity Act prohibits group health plans from imposing financial requirements or treatment limits — whether quantitative or nonquantitative — that apply only to behavioral health benefits or are more restrictive than those applied to medical/surgical benefits. A plan must prepare a written comparative analysis of any nonquantitative treatment limit, such as prior authorization, applied to ASD benefits demonstrating that the processes, strategies, evidentiary standards, and other factors used to apply the limit are comparable to and applied no more stringently than those applied to medical/surgical benefits. Federal agencies tasked with enforcing MHPAEA consider certain ASD treatment limits, such as ABA therapy exclusions or age limits on ASD treatments, to be red flags and have required plans found to be non-compliant to retroactively process improperly denied claims. In addition, state laws may require insured plans to cover specific ASD treatments.

It is important that employers recognize the value of supporting neurodiverse employees and family members. Plan sponsors investing in specialized resources such as clinical expertise and data analytics may be better positioned to address cost control while ensuring employees and their families receive the care they need. Of course, these efforts should never compromise compliance with all applicable laws and regulations.