Adaptive and Storytelling Practices of Panamanian Autism Families: Towards Culturally-Situated Digital Storytelling

Using a multi-faceted lens encompassing both national and neurodiversity culture, this work investigates the societal and infrastructure barriers faced by autism families in Panama to acquire healthcare and community resources. Inspired by the traditions of storytelling in Panamanian culture and educational pedagogy, we inquire into the role of storytelling in Panamanian autism families and explore the potential value and concerns of an envisioned storytelling mobile app. We conducted interviews with eight mothers of autistic individuals to understand the resources challenges of Panamanian families', their adaptive practices, and the role of storytelling in their daily lives. We found that families cultivated community networks and neurodivergent-friendly experiences, including stories co-created by children and parents. Storytelling served as a multifaceted tool for communicating, scaffolding routines, and anticipating challenging situations. Based on research insights, we conceptualize the stories crafted and retold by Panamanian autism families as boundary objects that translate and transfer information within and between autism families. This paper presents an initial exploration into the value and design of a storytelling app that that goes beyond the traditional focus of educational, structured social stories to encompass autistic, culturally-embedded self-expression. Our work identifies promising research and design directions that support autistic-lead storytelling considering infrastructure constraints for potential AI-based storytelling capabilities.