The pathway of early detection, diagnosis, and intervention for autistic children: a multi-center mixed method study
摘要
Timely progression through the early detection-diagnosis-intervention pathway is critical for optimizing outcomes in autistic children but is often impeded by barriers. This multi-center study aimed to describe this care pathway through the experiences of parents to identify key factors influencing its efficiency across diverse settings.
MethodsThis multi-center mixed-methods study (July–Oct 2024) integrated survey data collected from 397 primary caregivers and interviews with 17 family caregivers of autistic children across 11 Hainan cities. Survey data on child/family characteristics and clinical timelines were analyzed using regression/comparative tests. Interview data on care-pathway determinants were analyzed thematically. Findings were integrated via triangulation.
ResultsFindings demonstrated significant delays across all stages of the pathway. Descriptive analysis of survey data indicated that family members initiated detection in 70.3% of cases, with language delay the most common initial concern (88.9%), and that 76.6% of children received 15 or fewer intervention hours weekly. Integrated mixed-methods analysis identified key multilevel determinants: individual (e.g., developmental regression, parental awareness), inner setting (e.g., uneven resource distribution, workforce shortages), and outer setting (e.g., policy, cultural beliefs).
ConclusionsSubstantial delays and systemic barriers in the autistic care pathway necessitate coordinated strategies. Recommendations include enhancing parent education, developing integrated regional care networks, expanding telehealth, and implementing targeted public awareness campaigns. This framework offers transferable solutions for under-resourced settings, particularly in low- and middle-income countries facing similar autistic care challenges.
ImpactThis study identifies delays throughout the early detection, diagnosis, and intervention pathway for autistic children, influenced by individual, inner, and outer factors. It presents a comprehensive mixed-methods assessment of the care pathway in resource-limited settings, underscoring the key role of caregivers, cultural belief and structural barriers such as workforce shortages and geographic disparities in resource availability. The findings support the implementation of coordinated evidence-based strategies, including parent education, integrated regional care systems, telehealth services and targeted public awareness campaigns to strengthen early autistic care in comparable settings worldwide.