Delayed Diagnosis and Missed Opportunities for Early Autism Identification in Brazil: An Exploratory Scoping Review

Abstract

Highlights What are the main findings? • Delayed autism diagnosis in Brazil reflects multilevel barriers spanning families, providers, referral pathways, and health system organization.• Primary care played a limited role in early identification, while specialist-centered pathways and regional inequalities contributed to prolonged diagnostic trajectories. What are the implications of the main findings? • Earlier diagnosis may be improved by strengthening developmental surveillance, referral coordination, and primary health care capacity.• Future Brazilian research should prioritize standardized reporting, implementation studies, and broader geographic and equity-focused representation. Abstract Background/Objectives: Timely identification of autism spectrum disorder (ASD) is essential for access to early intervention; however, diagnostic delay remains a persistent challenge. Methods: This scoping review synthesized evidence from eight studies (>24,000 participants), most conducted in the Southeast region, on diagnostic pathways, screening practices, and barriers to ASD identification in Brazil, following PRISMA-ScR guidelines. Results: Across studies, mean age at diagnosis frequently exceeded 48–60 months, while the interval between first caregiver concern and diagnosis ranged from 24 to 36 months, with tertiary-care samples reporting diagnostic ages approaching 79 months. Diagnosis was predominantly specialist-driven, with limited involvement of primary care providers (PCPs). Later identification was associated with reliance on the public health system in a multinational analysis that included Brazil, while geographic concentration of specialized services and socioeconomic inequalities were identified as reported barriers across the included studies. Race/ethnicity was rarely reported. Delays emerged from interacting multilevel barriers, including limited caregiver awareness, dismissal of parental concerns, inconsistent developmental surveillance, fragmented referral pathways, and shortages of specialists. Structural inequities, particularly geographic disparities and urban concentration of services, compounded these challenges. Conclusions: The evidence suggests delayed ASD diagnosis in Brazil reflects systemic gaps in care organization rather than isolated clinical factors. Strengthening PCP-based developmental surveillance and improving referral coordination are key strategies to reduce preventable delays and promote earlier access to intervention.