A Systems Approach to Understanding Experiences of Primary Healthcare in Underserved Autistic Communities: Development and Evaluation of Participatory Creative Systems Mapping

Autistic people who are racially minoritised, are from areas of high economic deprivation, have co-occurring learning disabilities, or are non- or minimally-speaking are frequently excluded from autism research. This leaves critical gaps in evidence for service development. We addressed this by developing and evaluating “Participatory Creative Systems Mapping (PCSM)” – an emerging practice that combines Community-Based Participatory Research, Participatory Systems Mapping, and creative methods. The novelty arises from combining these approaches to systemically reduce barriers to underserved autistic communities’ participation and engagement in research.We partnered with disability-focused and community organisations, and an autistic steering group to develop and deliver accessible workshops. These workshops incorporated persona development, user journey mapping, storyboarding, and live artist visualisation to translate underserved autistic peoples’ experiences of primary healthcare into system-level insights. Thirty-one participants (including autistic adults and parents of autistic people) took part across four individual workshops. The participant cohort included representation from Somali and Black African communities (35.5%), areas of high neighbourhood deprivation, and reported a variety of methods for how they usually communicate. Autistic people with learning disabilities were represented, but this was not consistently self-reported by participants. Evaluation indicated high satisfaction, with all respondents who provided feedback about sharing their ideas and experiences reporting that they felt able to do so in the workshops. As proof of concept for PCSM as a method, we successfully produced a causal loop diagram reflected on by the steering group – the "Misalignment-Invalidation Cycle", illustrating how communication barriers and clinician invalidation generate reinforcing loops of misunderstanding and disengagement from healthcare. Finally, we share key methodological lessons for trust-building, flexibility, and accessibility infrastructure. These offer a roadmap for researchers who are seeking to engage underserved autistic people in participatory, system-level inquiry.