Bridging the Gap Between Autism Research and Community Needs: A Participatory Framework for Culturally Responsive Research Article Swipe

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Participatory action research Autism Citizen journalism Thematic analysis Accountability Bridging (networking) Public relations Sociology Psychology Community-based participatory research Cultural diversity Qualitative research Situated Interpersonal communication Community of practice Participatory design Visual research Culturally appropriate Social psychology Common ground Inclusion (mineral) Lived experience Engineering ethics Diversity (politics) Cultural competence Focus group Discourse analysis

Achraf Othman , Sabika Shaban ·

YOU? · · 2025 · Open Access · · DOI: https://doi.org/10.54455/mcn3003 · OA: W7117238755

At the heart of AutismTech 2025 in Doha, two expert-led panel discussions brought to light the ongoing disconnect between autism research and the everyday realities of autistic individuals, especially within Arabic-speaking communities where cultural and linguistic nuances are often overlooked. Although scientific understanding of autism has advanced globally, much of this progress has yet to translate into meaningful change for families and individuals in the Arab region. The sessions gathered a diverse group of voices—self-advocates, caregivers, clinicians, researchers, and policy leaders—who shared a common concern: research priorities often fail to reflect the lived experiences and needs of the communities they aim to serve. Through a detailed thematic analysis of the discussions, four recurring challenges became evident: a misalignment between research agendas and real-life needs, the absence of culturally adapted tools and communication methods, limited community involvement in the research process, and inadequate channels for sharing findings in accessible ways. In response to these challenges, participants collaboratively shaped a four-pillar participatory framework designed to realign autism research with community-defined goals. The framework calls for inclusive co-design practices, cultural contextualization, accessible dissemination of research outcomes, and stronger accountability mechanisms to ensure that knowledge reaches—and resonates with—those it is meant to benefit. This approach offers a new direction for autism research in the Arab region, moving from top-down methodologies to community-rooted partnerships. By centering lived experience, honoring cultural identity, and committing to shared accountability, the proposed framework has the potential to transform how research is conducted and applied—not just in Qatar, but across similar underrepresented settings.