Autism spectrum disorder (ASD) is a neurodevelopmental condition with significant implications for children, families, and service systems. In low- and middle-income countries, early identification and sustained multidisciplinary care are frequently constrained by structural inequities, centralized service delivery, and restricted institutional capacity. Although global awareness of ASD has expanded, fewer studies have examined how caregivers, frontline health professionals working with children with ASD, and other community members directly involved in care confront these systemic challenges in everyday practice. Understanding these perspectives is critical to inform culturally grounded and scalable responses.


Methods: A qualitative study was conducted in a low-resource urban districts of Peru. Data were generated through focus groups and semi-structured interviews designed to capture multi-actor perspectives on caregiving, service access, and institutional coordination. All sessions were audio-recorded, transcribed verbatim, and analyzed using reflexive thematic analysis to identify recurrent patterns across participant groups.

Results: Two focus groups comprising N=15 caregivers of children with ASD and N=10 semi-structured interviews with health personnel (psychologists, physicians, and nurses) and community leaders (schoolteachers and community health promoters) were conducted. Six interconnected themes emerged: (1) community-level invisibility and stigma surrounding ASD; (2) substantial emotional and financial burden on mothers as primary caregivers; (3) structural barriers within health and educational systems, including delayed diagnoses and long waiting lists; (4) weak intersectoral coordination across services; (5) development of family-based coping strategies and active advocacy; and (6) calls for community awareness and service decentralization. Families assume a disproportionate share of responsibility in sustaining care amid limited institutional response.


Conclusions: ASD care in urban Lima, a low-resource setting, relies heavily on family resilience amid persistent systemic gaps. These findings offer practice-informed insights to guide family-centered interventions, community-strengthening strategies, and intersectoral service models aimed at improving early detection, educational inclusion, and equitable access to specialized support in similar global contexts.