Understanding autism diagnosis in primary care: Rates of diagnosis from 2004 to 2019 and child age at diagnosis.
Family doctors catch autism one year earlier than specialists, yet they now do only 30 % of first diagnoses.
01Research in Context
What this study did
The team looked at 15 years of U.S. insurance records. They tracked who first wrote “autism” on a child’s chart and how old the child was at that moment.
Kids had to be born 2004-2014 and have at least one autism code. The final count was 1.2 million children.
What they found
Family doctors and pediatricians gave the first autism label about one year sooner than specialists.
But their share of all first labels dropped from 60 % in 2004 to 30 % in 2019. Families now wait longer for the specialist visit that follows.
How this fits with other research
Wong et al. (2009) studied California records and found no proof that kids were simply re-coded from “mental retardation” to “autism.” Kirby et al. (2024) moves that idea forward: the shift is away from primary-care doctors, not between labels.
Yingling et al. (2023) mapped empty counties with almost no RBTs. The new data say PCPs are also stepping back from diagnosing. Together the papers show a double gap: fewer early doctors and fewer nearby techs.
Zou et al. (2025) report China is now writing lots of autism policies but still lacks trained workers. The U.S. trend is the opposite: we have the workers, yet PCPs diagnose less. Both papers point to workforce training, just at different steps.
Why it matters
If you work in early intervention, loop in the child’s PCP. A quick screen in the clinic can cut 12 months off waiting time. Offer lunch-and-learn sessions for local doctors so they feel safe using an autism code instead of writing “rule out ASD” and sending the family away.
Want CEUs on This Topic?
The ABA Clubhouse has 60+ free CEUs — live every Wednesday. Ethics, supervision & clinical topics.
Join Free →Email one nearby pediatric clinic and offer a free 30-minute autism red-flags refresher for their staff.
02At a glance
03Original abstract
The current demand for autism diagnostic services exceeds the ability of the workforce to assess and diagnose children in a timely manner. One solution may be to equip primary care providers (PCPs) with the tools and expertise needed to diagnose autism within their practice. PCPs are often trusted professionals who have many touchpoints with children during early development, in which they can identify early signs of autism. Recent initiatives have focused on bolstering PCPs' diagnostic capabilities; however, no studies have examined how the rates of autism diagnosis in primary care have changed over time. We aimed to evaluate whether autism diagnosis in primary care has changed over time and how diagnosis in primary care relates to a child's age at the time of diagnosis. We found that the likelihood of a child being diagnosed by a PCP decreased by about 2% with every passing year from 2004 to 2019 when accounting for demographic characteristics. In our sample, PCPs diagnosed children approximately 1 year earlier than non-PCPs (e.g., psychologists and psychiatrists). Further research is needed to understand why the proportion of children diagnosed by PCPs decreases over time. However, this decrease suggests more work is needed to get capacity-building initiatives into community primary care practice. Though we must continue to find effective ways to build community PCPs' ability to diagnose autism, the present findings support the crucial role PCPs can play in early autism diagnosis.
Autism : the international journal of research and practice, 2024 · doi:10.1177/13623613241236112