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Evaluation ViewAttendees 16

Panel Discussions

Autism Spectrum and Developmental Disorders

Session: Engaging Autistic People as Full Research Partners: Evolutions in Community-Based Participatory Research Strategies

Panel Discussion 8 - Engaging Autistic People as Full Research Partners: Evolutions in Community-based Participatory Research Strategies

Friday, November 17, 2023
12:30 PM – 2:00 PM PST
Location: Chelais (305), Level 3
Earn 1.5 Credit
Keywords: Autism Spectrum Disorders, Stakeholder Relevant, Dissemination
Recommended Readings: Pellecchia, M., Mandell, D. S., Nuske, H. J., Azad, G., Benjamin Wolk, C., Maddox, B. B., ... & Beidas, R. S. (2018). Community–academic partnerships in implementation research. Journal of community psychology, 46(7), 941-952.,   Benevides, T. W., Shore, S. M., Palmer, K., Duncan, P., Plank, A., Andresen, M. L., ... & Coughlin, S. S. (2020). Listening to the autistic voice: Mental health priorities to guide research and practice in autism from a stakeholder-driven project. Autism, 24(4), 822-833.,   Ratto, A. B., Bascom, J., daVanport, S., Strang, J. F., Anthony, L. G., Verbalis, A., Pugliese, C., Nadwodny, N., Brown, L.X.Z., Cruz, M., Hector, B.L., Kapp, S.K., Giwa Onaiwu, M., Raymaker, D.M., Robison, J.E., Stewart, C., Stone, R., Whetsell, E., Pelphrey, K., & Kenworthy, L. (2022). Centering the Inner Experience of Autism: Development of the Self-Assessment of Autistic Traits. ;">Autism in Adulthood 2021.0099,   ,  
Approximately 25% of adults in the US have a disability. However, people with disabilities are underrepresented in the field of psychology. Some estimates are that people with disabilities represent as few as 2% of faculty appointments at APA-accredited programs, contributing to a potential lack of disabled representation on research teams. Community Based Participatory Research (CBPR) is an approach that has been increasingly used by autism researchers to enable disabled representation. In autism research, CBPR aims to create equitable partnerships between researchers and community members to incorporate autistic perspectives in every stage of the research process. This includes representation of disabled researchers as well as disabled community members. Our panelists include both autistic and non-autistic researchers, as well as autistic community members, who will discuss their experiences in collaborative research teams. The panel will begin by discussing their experiences creating and maintaining successful research partnerships between autistic and non-autistic researchers and community members. Panelists will highlight a range of strategies for supporting effective communication and collaboration, including considerations of accessibility needs (e.g., plain language materials), representation of diversity within the community, equitable and accessible (i.e., timely) compensation for community members that considers government benefits, approaches to collaborative decision-making processes, meaningful inclusion of disabled research partners, and opportunities for authorship and conference representation. The panel will present examples of how CBPR strategies have led to improvements in research processes and products, such as consent forms, measurement tools, educational programs, and a plain language translation of a published manuscript. Additionally, the panel will discuss the limitations of CBPR in addressing under-representation of autistic voices in research and innovative strategies for training, funding, and promoting autistic researchers. Finally, the panel will consider future directions for the inclusion of autistic researchers to improve clinical research.

Learning Objectives:

At the end of the session, the learner will be able to:
  • Identify benefits of community-based participatory research strategies to autism research.
  • Discuss specific strategies that can be used to enable meaningful inclusion of autistic people as co-researchers.
  • Discuss the role of accessible communication and clear strategies for collaborative decision-making in CBPR.
  • Discuss how authorship opportunities and financial compensation affect CBPR and inclusion of autistic researchers.
  • Identify limitations to community-based participatory research in addressing autistic representation in research.