Empowering Parents, Educating Professionals: Using Digital Storytelling and Participatory Action Research to Translate Knowledge and Promote Advocacy in Autism

This paper explores the use of digital storytelling and other storytelling methods to address the challenges parents of children with autism spectrum disorder (ASD) face in accessing services and support. The methodology uses a three-phase participatory action research design. In Phase I, parents of children with ASD created digital stories detailing their lived experiences of challenges in accessing services in San Antonio, Texas. Phase II, “Planning and Taking Action,” involved parents collaborating with undergraduate healthcare professional students in a co-learning classroom setting called “Rewriting the Script,” where digital stories were shared to foster knowledge exchange, action planning, and advocacy. Phase III, “Sharing Stories for Program Equity,” refined and implemented the community-based participatory action research approach from Phase II, allowing for evolving challenges to be addressed. This research aimed to cultivate a co-learning environment and advance multilevel interventions. Core findings reveal that this process empowered parents, enhanced awareness among future healthcare professionals regarding the complexities faced by families with ASD, and facilitated the co-creation of tools like the “Health Equity Map” to advocate for systemic change and improve service distribution. The study emphasizes the potential of digital storytelling and action research in driving social change to improve the lives of families affected by ASD.