Key takeaways:
- With long wait times to see specialists, it is becoming increasingly common for primary care providers to conduct autism assessments.
- Researchers estimate 29% of children in the U.S. were diagnosed by their PCP.
BOSTON — Nearly one-third of children with autism were diagnosed by a primary care provider, according to a study of Medicaid data from 2017 to 2019.
“An autism diagnosis is often required for insurance coverage of therapy services, but long wait times delay this process,” Corey A. Gorgas, MA, research coordinator in the Center for Community Health and Engaged Research at Northern Arizona University, told attendees at the Pediatric Academic Societies annual meeting. “While specialists such as developmental pediatricians or psychologists are frequently relied upon for conducting standardized autism assessments, some states have recently expanded upon training programs for primary care providers.”
Gorgas and colleagues from Project ASD3 set out to see how common it is for children to be diagnosed with autism by PCPs instead of specialists. In their study presented at PAS, the researchers analyzed Medicaid claims data for 36,263 children aged 1 through 5 years who were diagnosed with autism between Jan. 1, 2017, and June 30, 2019. The study compared diagnostic patterns throughout 29 states. Gorgas noted that they attempted to reduce misclassification bias by requiring a second ASD diagnosis claim within 6 months of the first if it came from a PCP.
Overall, the researchers reported that 29% of children received an autism diagnosis from a PCP. The median rates of PCP diagnoses were lowest in the Midwest (20%), followed by 27.3% in the South, 29.9% in the Northeast and 36.6% in the West.
Gorgas noted in his presentation that there was substantial variation within the Southeastern region of the country. Alabama and South Carolina had high median rates of PCP diagnosis (49% and 60.4%, respectively), whereas PCP diagnoses in Tennessee, North Carolina and Georgia were much lower (23.1%, 22.4% and 17.9% respectively), he said. The researchers noticed a similar discrepancy in the Northeast between Connecticut, which had the third-highest median rate of PCP diagnoses (53.1%) and New Hampshire, with the third-lowest median rate overall (14.3%).
Some states had high variation in the proportion of autism diagnoses made by PCPs in each county or set of counties, Gorgas noted. The interquartile ranges in Colorado, Illinois and Wyoming fell between 35% and 43%. In contrast, Connecticut, New Hampshire and Georgia showed the lowest amount of variation with IQRs below 13%.
“We suspect that either local practice patterns, or even individual providers, could be playing a role,” Gorgas said.
The researchers noted that areas with the lowest population density had a slightly higher rate of PCP diagnoses, compared with the areas with the highest population density (28.6% vs. 24.2%).
“In areas with high PCP diagnosis rates, we suspect that this could be due to a combination of either low specialist availability or effective PCP training, while conversely, low PCP diagnosis rates reflect either high specialist availability or lack of PCP training,” Gorgas said. “We believe that PCP autism training programs can help increase access to autism assessment, particularly when specialist availability is limited.”
For more information:
Corey A. Gorgas, MA, can be reached at pediatrics@healio.com.
Perspective
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Autumn Dye, DO
Disclosures: Dye reports no relevant financial disclosures.
Sources/Disclosures
Source:
Gorgas CA. Autism diagnosis by primary care providers: geographic variation among Medicaid-enrolled children in 29 states. Presented at Pediatric Academic Societies annual meeting; April 24-27, 2026; Boston.
Disclosures:
Gorgas reports no relevant financial disclosures.
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