A look at “Real-world evaluation of prevalence, cohort characteristics, and healthcare utilization and expenditures among adults and children with autism spectrum disorder, attention-deficit hyperactivity disorder, or both” by Amanda L. Zaleski, Kelly J. Thomas Craig, Raiha Khan, Rebecca Waber, Wei Xin, Makia Powers, Una Ramey, Dorothea J. Verbrugge and Deborah Fernandez-Turner (2025)
Numbers can tell a story too, especially when there are a couple of million of them. This American study analysed a year’s worth of health insurance claims from a large national insurer. The aim was to see how many people had an autism or ADHD diagnosis, what other health issues they faced, and how much healthcare they used.
What they found
The researchers looked at 2022 claims data for nearly 1.93 million adults and around 465,000 children.
How many had a diagnosis?
- Adults: 4.2% had ADHD, autism or both. That was 4.0% ADHD, just 0.1% autism and 0.1% both (AuDHD).
- Children: 6.7% had a diagnosis: 5.0% ADHD, 1.1% autism and 0.6% both.
Co-occurring conditions. Across all groups, people with ADHD and/or autism were at least twice as likely to have certain other diagnoses, mostly mental health-related, such as anxiety and depression.
Healthcare use. Both adults and children with these diagnoses used significantly more healthcare, and their care cost more, than people without.
The authors argue that this points to unmet needs and the importance of coordinated, whole-person care across the lifespan.
A grain of glitter ✨
The sheer size of this dataset is impressive, and it’s useful to have a “real-world” snapshot. But insurance data comes with built-in blind spots.
The most eye-catching figure is that only 0.1% of adults had an autism diagnosis. That’s far below most estimates of how many autistic adults exist, which strongly suggests huge numbers of autistic adults are undiagnosed or never had the diagnosis recorded. As the authors acknowledge, claims data only captures diagnoses that have been billed, so late-diagnosed, privately diagnosed or self-identified people are invisible.
The sample only included people with commercial insurance in the US, so it excludes those on government programmes or uninsured, often the most disadvantaged. The authors work for or with the insurer, which has a natural interest in healthcare costs. With such a huge sample, even tiny differences become statistically significant. And framing neurodivergent people largely in terms of “expenditure” may feel uncomfortable; higher healthcare use may reflect unmet needs and barriers, not people being a “cost”.
Why this matters
If you’re an autistic or ADHD adult and feel like you’ve been bouncing around the healthcare system, you’re not imagining it. Higher rates of co-occurring mental health conditions are common, and joined-up care is often lacking. The tiny adult autism figure is also a reminder of how many people go through life without recognition. If you’re wondering whether you might be one of them, exploring that question is valid.
The spreadsheets may have missed plenty of unicorns. That doesn’t mean they aren’t out there, grazing quietly in the data’s blind spots.