Primary Care Pediatricians’ Referral Decisions for Autism in Early Childhood: A Systematic Review

BACKGROUND The American Academy of Pediatrics recommends immediate referral of children screening at elevated likelihood of autism for diagnostic evaluation, early intervention, and audiology. However, most children screening at elevated autism likelihood are not referred. We aimed to synthesize decision-making processes related to generalist referrals to specialists for children with increased autism likelihood in the United States. We examined (i) rates of referral from generalist to specialist providers across medical and geographic settings, (ii) child/family factors that influence provider referrals, and (iii) facilitators and barriers to timely referral. METHODS We searched PubMed, PsycINFO, and Embase for studies that discussed autism likelihood in young children, discussed generalist to specialist referral, used empirical methods, and were set in the United States. We extracted the setting, study design, referral rates, child and family factors associated with referrals, and facilitators and barriers to referral. RESULTS A total of 38 articles were included. In studies with no intervention elements, providers refer children to evaluations and early intervention services at rates ranging from 20% to 58.4%. In intervention studies, referral rates ranged from 45% to 98% after intervention. Perceived symptom severity and greater caregiver concern were associated with increased referral rates. Barriers to referral included providers’ lack of confidence in screening tools and lack of local diagnostic and intervention sites. Interventions to facilitate rates of referral varied widely in their characteristics and outcomes. This review was restricted to the United States and included few high-quality experimental interventions. CONCLUSIONS Increased research efforts should focus on increasing referral rates to early intervention, which is appropriate even for children with false positive results screening at elevated autism likelihood. Rigorous studies that optimize referral processes across providers and settings are needed.