When a young autistic woman communicated through her letterboard during a course planning session at George Washington University—"You can go home if you're tired, but I'll stay"—she was asserting her role as a knowledge producer, not a research subject.
For six years, Dr. Sean D. Cleary, an Associate Professor of Epidemiology in the Milken School of Public Health, has collaborated with Our Stomping Ground (OSG), a non-profit community organization that focuses on supporting inclusive living for people with all abilities, in what has become a model of epistemic justice grounded in Community-Based Participatory Research (CBPR) principles. The partnership centers the knowledge and lived experiences of autistic adults in research, advocacy, and learning. We teach and model authentic community engagement as the foundation for both research and public health practice.
The collaboration's centerpiece is PUBH 6232 The Autism Experience: A Public Health Perspective, a course co-created through nearly a year of monthly meetings between Dr. Cleary and twelve autistic adults who refer to themselves as "the tribe." The result is a course where ten to twelve autistic adults participate each semester as content experts, leading small group discussions alongside graduate and undergraduate students—despite a wide range of expressive communication supports, including some participants who have limited speaking abilities. Since members of the community are invited to attend the course at GW, students have the opportunity to engage with, listen to, and work together with autistic adults to address community-driven priorities. The skills learned, such as humility, trust, the co-production of knowledge, translating evidence into practice, and understanding power dynamics, which are fundamental to conducting community-based participatory research, are challenging to teach solely in the classroom. For the autistic adults, their family members and communication partners that attend the course, the value lies in the recognition of their lived experiences as the knowledge lens that must guide our research. They are actively engaged in reading and discussing the course material, listening to lectures and questioning the presenters, leading sessions on their lived experiences, and developing friendships that may never have been made. Our community partners’ voices drive the issues we focus on each semester, such as housing, employment, and health. They help shape the questions asked, the methods used, and in identifying the most salient outputs, so that the student-partner projects align with their expressed needs and goals. The Nashman Center, the Milken Institute School of Public Health and the Department of Epidemiology, have provided resources, support, and flexibility to design a unique course that focuses on developing academic-community research partnerships. The partnership over the past six years works because we have developed mutual respect, a shared purpose, and a commitment to producing knowledge and outcomes that have an impact beyond the classroom.
The pedagogical approach extends beyond the classroom. Students volunteer with OSG for experiential learning and to support research or advocacy projects developed in consultation with community members. Guest lecturers from speech and language pathology, anthropology, criminal justice, employment support organizations, and education contribute to the course's transdisciplinary nature, while small discussion groups allow students to engage directly with lived experience perspectives on these topics.
Donna Budway, community liaison for OSG emphasizes the reciprocal nature of the partnership. The organization benefits from service learners while providing students valuable learning opportunities. Students witness firsthand how public health can center community voices in addressing issues affecting their lives, while autistic participants engage as content experts rather than service recipients—an empowering shift in positionality.
The partnership's influence has extended across campus. Eleven additional courses now partner with OSG regularly, including six in Human Services and Social Justice, two in Occupational Therapy, one in Physical Therapy, and one in Art Therapy. The collaboration has generated multiple research projects, regularly presented at GW's Research Showcase and frequently recognized as finalists for the Nashman Center Community Engaged Research Prize.
Research emerging from the partnership has attracted substantial funding, including grants to study the impact of inclusive housing on health outcomes, emergency alert systems' effects on autistic adults, and the opportunity to engage autistic adults as co-researchers. In 2022, Dr. Cleary and community partners jointly received the Campus-Community Partnerships Award from Transform Mid-Atlantic, recognizing their shared commitment to reciprocal scholarship.
A 2023 Knapp Fellowship for Entrepreneurial Service Learning project by student Jennifer Ko, ’24 MPH, exemplifies the partnership's ongoing evolution. Her healthy lifestyles workshop series for adults with developmental disabilities—including cooking lessons, grocery store visits, and exercise exploration—has become an annual component of the course's service-learning opportunity.
By recognizing that autistic adults are essential for creating meaningful public health curriculum, the partnership challenges conventional assumptions about expertise and knowledge production in academic settings. Dr. Cleary now regularly shares this model through Nashman Center Faculty Learning Communities and community partner panels, providing guidance to other faculty developing reciprocal community partnerships.
The partnership represents an ongoing commitment to epistemic justice—the recognition that marginalized communities possess valuable knowledge that should inform academic discourse, research agendas, and policy discussions. As the tribe member's letterboard message suggested during that early planning meeting, this is not work from which participants tire easily. It is work that sustains and empowers.