Primary Care Providers Diagnose Nearly One-Third of Children With Autism

A significant portion of children with autism are receiving their initial diagnoses from primary care providers rather than specialized clinicians, according to a study analyzing Medicaid data. The findings indicate that nearly one-third of children with autism were diagnosed by a primary care provider.

The research, which examined Medicaid data from 2017 to 2019, was presented at the Pediatric Academic Societies annual meeting. The data suggests a shift in how autism spectrum disorder is identified within the healthcare system, highlighting the role of general practitioners in the diagnostic process.

Corey A. Gorgas, MA, a research coordinator in the Center for Community Health and Engaged Research at Northern Arizona University, presented the findings to attendees. The study emphasizes the critical link between a formal diagnosis and the ability of families to access necessary medical support.

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

The Specialist Bottleneck

Traditionally, the gold standard for autism diagnosis involves a multidisciplinary approach. Specialists, including developmental pediatricians and psychologists, are typically relied upon to conduct standardized evaluations and diagnostic tests to ensure accuracy.

However, the availability of these specialists is often limited. Many families face extensive waitlists to see a developmental pediatrician or a pediatric neuropsychologist, which can leave children without a formal diagnosis for months or even years during critical developmental windows.

This gap in specialist availability has positioned primary care providers as a primary gateway for diagnosis. When PCPs provide the diagnosis, it may allow families to bypass the specialist waitlist and move more quickly toward obtaining insurance authorization for therapeutic interventions.

Insurance and Early Intervention

The timing of a diagnosis is a pivotal factor in the trajectory of care for children with autism. Early intervention services, such as speech therapy, occupational therapy, and behavioral interventions, are most effective when implemented as early as possible in a child’s development.

Because most insurance providers require a specific diagnostic code to cover these services, the delay in seeing a specialist can act as a barrier to care. The reliance on PCPs to provide these diagnoses reflects an attempt to mitigate these delays and accelerate the start of therapy.

The use of Medicaid data from 2017 to 2019 provides a snapshot of this trend among a population that often faces additional barriers to healthcare access, including socioeconomic challenges and a higher reliance on public health infrastructure.

Clinical Implications of PCP Diagnosis

While PCP-led diagnoses can speed up access to services, the medical community continues to balance the need for speed with the need for standardized diagnostic rigor. Specialists utilize comprehensive toolkits and observation-based assessments that may not be available or feasible in a standard primary care setting.

The trend observed in the Northern Arizona University research underscores a systemic pressure on the primary care workforce to take on roles traditionally reserved for specialists. This shift highlights the ongoing need for increased training for PCPs in developmental screening and the necessity of expanding the specialist workforce to reduce wait times.

By identifying that nearly one-third of these diagnoses are occurring at the primary care level, the study provides a data-driven look at how the healthcare system is adapting—or struggling—to meet the demand for autism evaluations and subsequent care.