We aimed to explore pediatric primary care provider (PCP) experiences and needs around identification and management of autism spectrum disorder (ASD) in toddlers for the purpose of planning improved supports and services for ASD in the medical home.
We recruited 28 PCPs to participate in semistructured interviews via Zoom. Probe questions elicited opinions about current screening and referral procedures, experiences obtaining services for patients, effective communication with parents, physician emotional experience when introducing ASD concerns, practice-based sources of disparities, and larger needs for ASD management in the primary care setting. Interview transcripts were analyzed qualitatively by a multispecialty research team for recurrent themes using grounded theory analysis.
Participants were 89% women, ranging in clinical experience from <1 year to >27 years, representing 8 diverse pediatric primary care clinic sites at a Midwest academic medical center. Dominant themes relating to PCPs’ cognitive, emotional, and environmental experience of caring for patients with ASD were identified, which reflected the trajectory of ASD identification (the parent lens; the “A” word), referral (the autism labyrinth; provider disempowerment; parent activation as a source of inequities), and long-term management (the “black box”; provider emotional investment).
Existing literature and results from this study suggest a need for targeted improvements in primary care to: (1) increase PCP capacity and confidence in communicating concerns of ASD with families; (2) refer for timely diagnostic evaluations in trusted and easy-to-navigate care systems; and (3) increase family activation and capacity to follow up on ASD evaluation and treatment services.