Priority Setting Among Autistic Adults to Develop a Research Agenda to Address Health Outcomes

Background: Evidence about the healthcare experiences among autistic adults and their caregivers is minimal and lacking (e.g. Nicolaidis et al., 2012). Given that this group has been marginalized and under-represented in research, it is imperative to provide voice to the priorities that the adult autism community see as next research steps. To accomplish this purpose, this Project Team, comprised of 3 autistic investigators and 2 neurotypical investigators, implemented a participatory action research approach.

Objectives: 1). Discuss the initial process of priority setting a research agenda with a small group of autistic adults (n=16), family members (n=8), and research/educational community members (n=14); 2). Discuss specific recommendations for improved researcher-autism community relationships.

Methods: Participatory action research methods were used, and included: large group meetings with stakeholders, small meetings with community members, and action steps driven by previous community preferences. Initially, large group and small group face-to-face meetings were conducted during a 1-day conference to discuss gaps and next steps for addressing needs of autistic adults. Member checking through reporting meeting outcomes and requesting feedback from a 15 member community council of autistic adults resulted in additional clarification of priorities. Continued use of face-to-face and social media engagement has informed actions and decisions.

Results: Attendees at the large group meeting reported that lack of mutual respect and trust inhibited participation and involvement in research activities for adults with autism. Actions which undermined trust included: lack of reporting results in a way that the autism community could understand or benefit from, lack of adequate compensation to be involved as research collaborators or participants, and lack of involvement in research decisions, including the development of what research questions are important. Preferred allocation of hypothetical research dollars for adult needs among meeting participants included: mental health interventions and outcomes (33% of funding), improving social well-being (24%), improving access to services (24%), addressing knowledge/skills/attitudes of providers and environments where care occurs (13%), addressing physical health outcomes (10%), and injury and mortality risks (5%).

Conclusions: As a result of this process, a Compensation Guide was drafted to outline roles and associated guidelines for compensation of autistic individuals. Collaborations with mental health providers and organizations are being developed and discussing findings with researchers are underway. More work needs to be done to fully include the autism community in defining the funding priorities, researcher activities, and approaches to ensure equitable participation in the research process. The current work represents a fraction of the autistic adult community, however, provides an initial framework for exploring more specific needs of this group.