Adaptive and Storytelling Practices of Panamanian Autism Families: Towards Culturally-Situated Digital Storytelling
Elizabeth del Carmen Castillo, Debbie Alvarado Latino, Cecilia Aracelly Fonseca Sánchez, Annuska Zolyomi · 2026 · Proceedings of the ACM on Human-Computer Interaction (GROUP) · doi:10.1145/3799440
Summary
This PACM HCI (GROUP) paper presents a formative, culturally-situated design study with eight Panamanian mothers of autistic individuals (ages 3–27) to understand the resource barriers autism families face in Panamá and the role storytelling plays in their daily lives. The authors — several with Central American family roots — deliberately position their work against the HCI literature’s Western bias and the fact that autism is not officially recognized as a disability in Panamá, leaving families without statutory support. They ground the work in the connected learning paradigm and reject Hofstede’s cultural dimensions as their analytic frame, arguing it is too stereotypical for work at the intersection of national and neurodiversity culture. Semi-structured interviews conducted in Spanish via Zoom and What’s App (the platform of choice in Central America) were combined with a cognitive walkthrough of a Figma-prototyped storytelling mobile app, plus two example Spanish-language Social Stories. Grounded inductive analysis via affinity diagramming produced four themes: (1) barriers to knowledge and community and the adaptations families developed, (2) the multifaceted role of storytelling, (3) co-creation of stories, and (4) storytelling to scaffold daily routines and anticipate change. The authors theorise family stories as boundary objects — per Star and Griesemer — that retain immutable content while translating autism-related information across three nested social worlds: the individual, the close family network, and the broader public. They extend Bala et al.’s migrant-storytelling framing into the autism context and argue for autistic-led, culturally embedded digital storytelling beyond the therapeutic Social Stories tradition.
Key findings
Panamanian autism families face compounding barriers: autism is not a recognised disability nationally, teachers lack training, healthcare is inconsistent especially in rural areas, and broadband access is uneven. Families adapted by building community networks (often started by a parent—one participant used her journalism career to become an autism advocate), heavy use of What’s App, and extensive use of pictograms for emotions, routines, and novel situations. Storytelling emerged as a multifaceted tool: to create knowledge, reinforce family values, scaffold unfamiliar events (e.g., a barber visit recast as 'going to planet X'), and support emotional regulation at bedtime. Most participants had never heard of Carol Gray’s Social Stories™ in the formal sense but had organically developed equivalent practices, and felt validated seeing their work reflected in the artifacts shown. Participants responded positively to the prototype’s puzzle-piece home screen (which has fallen out of favour in US autism design but is recognised in Panamá) while flagging privacy concerns about who can view family stories. Participants wanted customisation of colour, short stories over long ones, multimodal input (voice, drawing, photo), and autistic-led authorship. The authors argue that embedded LLM features must be designed with on-device quantisation (e.g., TinyLlama) to function within Panamá’s infrastructure constraints.
Relevance
This paper is directly relevant to accessibility practice in two ways. First, it provides a concrete example of designing with — not just for — a community underrepresented in HCI: autism families in the Global South, where both national and neurodiversity culture shape needs in ways Western-oriented design frameworks miss. Practitioners designing AAC tools, social-story apps, or family-communication platforms should read the authors' research-and-design directions table (ten needs mapped to Panamanian cultural factors) before assuming US/UK conventions transfer. Second, the paper models how to treat stories as boundary objects that move across a family’s individual, close-network, and public social worlds, which has implications for privacy design, authorship, and sharing controls in any community-knowledge platform. Limitations include the small (n=8), all-mother sample recruited through one organisation and the absence of direct data from autistic individuals themselves — future work is planned with autistic participants via ethnographic observation and co-design.
Tags: autism · neurodiversity · culture · Global South · storytelling · social stories · boundary objects · participatory design · AAC · qualitative research · HCI
Standards referenced: W3C WAI