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A Familiarization Protocol Facilitates the Participation of Children with ASD in Electrophysiological Research
Published on: July 31, 2017
From Participants to Community Partners: A Novel Community-Based Participatory Research (CBPR) Approach to
Vivian Darlene Grillo1,2,3, Margherita Zani1,2, Vittoria Veronesi1,2
1Observation Diagnosis and Training Laboratory (ODFLab), 38068 Rovereto, Italy.
Abstract:
Background/Objectives: Autism research has often interpreted autistic sociality through neurotypical norms, limiting ecological accounts of autistic meaning-making and context-sensitive support needs. Social virtual environments (SVEs), such as VRChat, allow modulation of sensory exposure, social distance, and participation pace, potentially enabling autistic-led interaction with greater autonomy and predictability. This study examined how autistic young adults co-construct meanings around social interaction, identity, and self-regulation in peer-led discussions within an SVE; identified context-sensitive processes relevant to well-being; and evaluated the feasibility and acceptability of SVEs as a participatory research setting. Methods: Sixteen autistic young adults (18-38 years; DSM-5-TR, Level 1) participated in nine remote sessions conducted in VRChat, coordinated via a co-designed Discord server. The peer-led discussions were audio-video recorded, transcribed, and anonymized. Data were analyzed using reflexive thematic analysis, combining inductive session-level coding, cross-session thematic clustering, and participatory refinement with community partners. Results: Autistic experience was framed as a context-dependent negotiation of interpretive risk, interactional workload, masking-related energy costs, and epistemic injustice, alongside future-oriented accounts emphasizing access, dignity, and systemic redesign. Observational memos documented multimodal participation, distributed peer facilitation, and accessibility-relevant sensitivities to environmental stability. Community partners reported positive experiences and supported the acceptability of private-world VRChat sessions. Conclusions: Peer-led discussions in an SVE can support ecologically grounded, participant-centered qualitative research, offering methodological opportunities to study autistic meaning-making under conditions that reduce demands and risks.
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