Including Autistic Adults in Research to Develop and Evaluate Services Interventions: Lessons from a Long-Standing Academic-Community Partnership

Background: Though there is a growing appreciation for the value of participatory methods in other fields, autistic individuals are infrequently included as co-researchers in autism research.

Objectives: To use our team’s experience conducting participatory, mixed-methods intervention research with and for autistic adults to inform future research.

Methods: The Academic Autism Spectrum Partnership in Research and Education (AASPIRE) has been conducting community based participatory research (CBPR) with autistic individuals and other stakeholders since 2006. During this time, we have successfully conducted ten research studies with autistic adults. We reviewed field notes and other materials from this body of work. We then confirmed and expanded our recollections via discussions with community and academic partners.

Results: AASPIRE was founded due to the Autistic community’s frustration with research that did not meet their needs or priorities. Since its inception, AASPIRE has aimed to include autistic adults as equal partners though every phase of the research process. In theory, community partners are primarily responsible for keeping the research respectful, accessible, and socially relevant, while academic partners are primarily responsible for keeping the research scientifically rigorous and academically relevant.

In practice, authentically including autistic adults in research has required considerable attention to individualized accommodations, communication, power sharing, and trust-building. Though many team members have worked with AASPIRE since the beginning, some have left and others have joined over the years. We have had 6-10 autistic partners on the team at any time. We have tried to include partners with diverse lived experiences and to maintain a balance between autistic community leaders and other autistic adults. Since our founding, several autistic team members have obtained advanced degrees themselves.

Due to the dispersed nature of our team, much of our communication happens online. We have developed a structured email format to promote clarity. Group meetings are via text-based instant messenger chat, but partners may also provide input individually via email or telephone. We have developed a variety of facilitation strategies to keep meetings accessible, respectful, fun, and efficient. We have found that a formal consensus process helps ensure shared decision-making. Constant evaluation and adaptation of our collaboration processes has been essential to building a culture of trust.

Academic and community partners have worked together in every phase of the research, collaboratively choosing research topics, obtaining funding, creating materials, designing interventions, interpreting data, and disseminating results. We have found the CBPR process to be particularly helpful in creating accessible consent and data collection materials. The CBPR process has also been critical in designing effective interventions. We collaboratively created an online, interactive healthcare toolkit for autistic adults and their primary care providers, which we have found to decrease barriers to healthcare and improve patient-provider communication and patient self-efficacy. We have used our experiences to create a set of guidelines for the inclusion of autistic adults in research.

Conclusions: CBPR necessitates significant attention to collaboration processes, power-sharing, co-learning, and trust. Authentically including autistic adults as team members can greatly impact the quality of the research process and the resulting interventions.