Understanding and improving the care pathway for children with autism

Abstract

Purpose: To describe current care pathways for children with autism including enablers and barriers, as experienced by health professionals, education professionals, and families in South Wales, UK. Design/methodology/approach: A mixed-methods approach using focus group discussions, creative writing workshops and visualisation using rich pictures. Findings: The experiences of the care pathways differed significantly across the three groups. Health professionals described the most rigidly-structured pathways, with clear entry points and outcomes. Education professionals and parents described more complex and confusing pathways, with parents assuming the responsibility of coordinating the health and education activity in a bid to link the two independent pathways. All three groups identified enablers, although these differed across the groups. The barriers were more consistent across the groups (e.g. poor communication, missing information, lack of transparency, limited post diagnosis services and access to services based on diagnosis rather than need). Practical implications: This research could inform the design of new services which are premised on multi-agency and multi-disciplinary working to ensure children with ASD receive joined up services and support. Originality/value: Although this study did not represent all professional groups or all experiences of autism, we examined three different perspectives of the ASD pathway. In addition, we triangulated high-level process maps with rich pictures and creative writing exercises, which allowed us to identify specific recommendations to improve integration and reduce duplication and gaps in provision