Autistic adults have multiple, chronic, and potentially preventable healthcare needs as compared to same-aged adults without autism. Much of what is known about the health and healthcare needs of autistic adults has emerged from health services research without knowing the specific priorities of autistic people for addressing barriers to care (e.g. Croen et al., 2015; Zerbo et al., 2018; Schott et al., 2020). Approximately 2% of U.S. research funding in autism is spent in addressing adult outcomes (IACC, n.d.).

As a result, community based participatory research employing large stakeholder meetings, surveys, and focus groups (n=390) was undertaken across 3 continents (U.S.A., U.K. and Australia) to determine health care priorities for autistic individuals. Results of this study suggest access to mental health supports and social well being as top priorities for the autistic community.

Further discussion includes strategies used for engendering authentic engagement of autistic individuals in research including building and maintaining a safe, authentic, and inclusive environment for our autistic community council. This is done by assuming competence, promoting effective communication, assuring fair compensation, and proper consideration of the autistic experience (Shore & Benevides, 2018); which can be generalized to the international educational community.

Finally, the evolution of a 3 step decision-making process that ensures all community council member opinions and thought processes are valued, leading to 100% consensus (Benevides et al, 2025). Achieving 100% consensus often required the team leaders to address and resolve a single person's strong feelings of discomfort on a possible decision.

Authors:
Stephen Shore, Adelphi University of New York, United States

About the Presenter(s)
Professor Stephen Shore is a University Assistant Professor/Lecturer at Adelphi University of New York in United States

Connect on Linkedin
https://www.linkedin.com/in/stephen-shore-56348015/

Connect on ResearchGate
https://www.researchgate.net/profile/Stephen-Shore

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