It is commonly known that it takes an average of 17 years before an impactful research study affecting clinical or healthcare knowledge is incorporated into practice. Why the delay? And why, in the era of social media and rapid information flow, is information misinterpreted and contorted? These questions, and others, are important for our society to consider, because how we construct knowledge and learn from one another is more than a researcher’s responsibility. It is a community responsibility.
In the autism community, a rich tapestry of knowledge comes from individual lived experiences that ultimately affect how people identify themselves, pursue goals, and experience the world. Unfortunately, like in many other communities, there has been marginalization, suppression, or exclusion of some voices in autism research, resulting in knowledge that is partially true for some but definitely not true for others. These gaps greatly impact what we think about autism and how we pursue next steps. Acknowledging the imperfect history of research broadly and within the autism community specifically is also essential for understanding why community-partnered research is important.
Through the lens of shared ownership of knowledge and the importance of rectifying historical power differentials in research, one solution is an active and intentional practice of community engagement in research. This solution does not skew towards a specific approach — e.g., community-based participatory research (CBPR) — but rather acknowledges a continuum of engagement by the autism community depending on the research question, the type of study, and the resources available.
Who is in the Autism Community?
A community is a group of people who are impacted by one another’s decisions and actions. Autistic people are most impacted by autism research and are key members of a research team. Care partners of autistic people are also impacted by autism research. Other members of the autism community include:
- Organizations that develop and deliver services and supports
- Clinicians or educators who work with autistic people
- Healthcare decision-makers
- Leaders who govern systemic policies and practices
- Public health professionals
- Payers or regulators who determine the payments of services and supports
In the historical scope of autism research, some community members have had more influence and opportunity to be included than others. This imbalance of power within decision-making related to research has negatively affected how members of the community interact and understand each other’s needs. An important part of authentic engagement requires acknowledgment of these previous exclusions and explicit actions to ensure members feel welcomed, supported, and able to contribute their perspectives.
Engaging all of these community members as co-researchers addresses gaps in knowledge through alignment of people in the community who are most directly impacted by those gaps. Including impacted members of the community as co-research partners ignites an urgency and expected impact that otherwise wouldn’t exist in academic-driven inquiry.
Key Elements for Effective Partnerships
If we can acknowledge the importance of community-engaged research, then we need to identify the elements that sustain effective partnerships. I can only write about my experiences in community-engaged research and recognize that other teams develop, learn, and grow differently. In my experience, the key elements for developing and sustaining our team of autistic and non-autistic research partners have been:
- Humility and openness to change
- Building on strengths and maximizing abilities through supportive virtual, physical, sensory, and social environments and opportunities
- Developing deep (not superficial) working relationships that acknowledge each person’s identity and life experiences
- Celebrating the success and growth of our team collectively
Fundamentally, these elements promote a stronger team and lead to trust, better awareness of where and when adjustments in process or timeline are needed, and increased participation and ownership of the research process by all members of a team. This, in turn, means that our team can have meaningful and authentic conversations that include constructive feedback and requests for changes related to the research that otherwise might not be raised.
Building a community of autistic research partners and others takes time, funding, and a genuine desire to do the research for more than the next grant or publication. Authentic autistic engagement for our team has included:
- Presuming competence and lived experience are as important as formal research training
- Asking community research partners what their goals and hopes are (personally and professionally)
- Figuring out how to ensure the collaboration is mutually beneficial by offering a variety of research roles that align with those goals
- Learning about each person’s preferred communication style and whether they have any requests for creating a successful working environment
- Being open and explicit about compensation and any university/system requirements or barriers that the research team leaders can anticipate (e.g., delays in payment due to processing time)
- Being open and explicit about needed resources and whether there is compensation for those (e.g., internet time to join video calls, need for a computer, and child care support so they have uninterrupted time to participate)
- Sharing clear and detailed information about the roles, tasks required, and timeline for completion
- Collaboratively developing group procedures and expectations about things that might not otherwise be stated (e.g., is there a preferred process for raising concerns? For making decisions? For sending an email and expecting responses?)
- Building in structures for how engagement is evaluated and process checks for whether people are truly involved or just named on paper (i.e., tokenized)
Elements of Ineffective Partnerships
I have observed situations where community participatory research is claimed but does not appear to happen. Red flags suggesting lack of engagement include:
- Ineffective communication processes that exclude people due to lack of accessibility, timeliness, or clarity
- Lack of clearly shared power in a project or involving people tokenistically rather than authentically
- Lack of compensation that is pervasive or unaddressed (rather than occasional, as might happen due to loss of funding between projects or system/processing delays)
- Lack of opportunities for feedback on the process or product, suggesting the team is not open to learning and growing
- Lack of measurable or identifiable change that occurs in the research process following community partner involvement
Oftentimes, researchers who involve community partners without planning can fall into a trap, thinking the research process will unfold as usual with the addition of occasional advisory board meetings. However, truly engaged partners provide substantial and meaningful input that requires timelines to slow down and research procedures to change. Researchers should be prepared to flex timelines, budgets, and research design elements with community involvement.
Funding Community-Involved Research
Academic researchers, community research partners, and organizations that fund and support research should be aware that systems greatly impact the success of such research. Organizations that fund research that emphasizes community involvement should anticipate and allow for:
- Timelines that are flexible and not rigid
- Adjustments to budget or travel that happen when processes or procedures necessitate support for expanded community member involvement
- Regular check-ins to support teams when challenges arise
Institutional Support for Community-Involved Research
Sometimes academic institutions create unnecessary barriers, particularly around compensation or training requirements. Greater attention to successful solutions and processes (and the publication of these engagement strategies) is needed. Further, autistic people and care partners in the community should recognize that these barriers exist and oftentimes are outside of the control of the academic research team leaders. Academic researchers who regularly do this work are often advocates within their institution, calling for changes to processes and procedures that negatively impact our community partners. However, because they often lack the direct ability to cause change, it is important to implement workarounds as needed and for all members to be flexible.
Some things that would help increase community-engaged research include:
- Accessible and clear human subjects research training that is understandable and presented in a variety of formats (e.g., universally designed learning)
- Flexible compensation opportunities from academic institutions that recognize that not all research team members have the ability to generate invoices, receive monetary payments, or have internet to support involvement
- Policies allowing for reimbursement of research-related costs for community partners (e.g., paying for a person’s internet to be able to join virtual meetings)
Additionally, organizations can be catalysts for connecting interested community members with academic researchers. Oftentimes, academic researchers wonder how to meet or find community partners who are interested, and organizations can play a role in supporting those connections, such as through hosted events or newsletters with opportunity listings.
Lastly, due to the extreme distrust, marginalization, and continued ‘othering’ in autism research, I suggest that we do a better job of listening to one another. It is unlikely that there will ever be a team that includes all perspectives or experiences, but we can respect and listen to one another. We can acknowledge who is on our team, who is not, and what other teams can do to build on that work. This is a collaborative effort to fill in the gaps in our knowledge thoughtfully and respectfully. In this way, we can take the research outside of our academic institutions and ensure that it is co-owned by people who can use it and share it for good.
Teal W. Benevides, PhD, MS, OTR/L, FAOTA, is a wife, mother, occupational therapist, and researcher. She is a tenured associate professor in the Institute of Public and Preventive Health at Augusta University. Dr. Benevides is committed to fostering access to services and supports for autistic people and others with intellectual and developmental disabilities through community-engaged approaches. She is a member of OAR’s Scientific Council and a fellow of the American Occupational Therapy Association, and serves on several additional autism, suicide prevention, and occupational therapy organizations as a board or committee member to advance scientific knowledge, translation, and promotion of community priorities.