Through the long dark night: A phenomenological exploration of treatment-seeking experiences for autism in resource-limited settings

Abstract

Autism care in resource-limited regions faces systemic delays and fragmented services, yet the treatment-seeking experiences of families remain poorly understood. This study aimed to explore the experience of treatment-seeking for families with autistic children in resource-limited settings. A phenomenological study was conducted across three resource-limited regions. Semi-structured interviews with 44 caregivers were analyzed using Colaizzi’s framework and qualitative analysis software (NVivo 12). Data analysis identified eight subthemes falling into three macrothemes: (1) Socio-cognitive barriers in symptom recognition; (2) Structural vulnerabilities in care access; (3) Transformative adaptation pathways. The treatment-seeking journeys of families with autistic children in resource-limited settings are shaped by culturally rooted symptom misinterpretations, structural inequities, and adaptive resilience through redefined success metrics. These intersecting challenges trap families in cycles of delayed care and financial strain. Integrated community-based early screening, subsidized tiered services, and long-term care policies are urgently needed to alleviate familial strain and bridge systemic care gaps.

Lay Abstract

This study explores the experiences of families seeking autism care in areas with limited resources. Through interviews with 44 caregivers across three regions in China, we found that misunderstandings about early autism symptoms, combined with limited access to specialized services, often lead to delayed diagnosis and high financial costs. Families also face emotional challenges and social stigma. Over time, many develop resilience by adjusting their expectations and finding support within their communities. The study highlights an urgent need for earlier community-based screening, affordable interventions, and stronger long-term support policies to better assist autistic children and their families.