Bridging the gap in autism care: A qualitative analysis of policies, practices, and family experiences

OBJECTIVES: France has significantly expanded its provision of care and services for autistic children over the past decade. Yet, there is little research on families' experiences accessing these services, particularly for the most socially vulnerable. This study investigates autism care pathways in France, focusing on how a Centre of excellence for autism located in a socially disadvantaged area, impact families. STUDY DESIGN: Qualitative research with semi-structured interviews. METHODS: Following fieldwork to describe the practices of healthcare professionals involved in the care of autistic children in the environment of the Centre d'excellence, located in the Robert Debré University Hospital in Paris, we conducted semi-structured interviews with 31 families followed at the Centre d'excellence. We analyzed the data using reflexive thematic analysis. RESULTS: The findings reveal persistent gaps between national policies and the realities experienced by the most vulnerable families. While excellence centres improve diagnostic accuracy and promote innovative interventions, they often seem distant from local practices. Many families experience delays in receiving diagnoses and struggle to navigate the care system due to administrative and financial barriers. The study identifies four family coping profiles, ranging from well-informed to disconnected families, illustrating how social backgrounds shape engagement with autism services. CONCLUSIONS: The research underscores the importance of parental guidance and trust-building to reduce disparities in access and improve outcomes for children with autism.