Authentic Inclusion in Autism Research
December 04, 2018
I co-founded the Academic Autism Spectrum Partnership in Research and Education (AASPIRE) with my friend and colleague, Dr. Christina Nicolaidis, in 2006. At that time, including a majority of autistic adults as co-researchers on the team and conducting autism research with autistic participants as self-reporters were such radical ideas that a grant reviewer told us there was a lack of “adequate evidence” that autistic people could “self-reflect” enough for our study to succeed.
Luckily, a lot has changed since then. AASPIRE is no longer the only research group that includes autistic people as co-researchers (for example, ASSET). The International Society for Autism Research (INSAR) has held workshops on engaging autistic people and other non-scientist stakeholders. We have autistic people on the Interagency Autism Coordinating Committee (IACC), which helps decide priorities for federal autism research. AASPIRE has gotten funding to conduct multiple studies the Autistic community has wanted on healthcare, employment, violence, and burnout. Major research journals such as “Autism” have updated the language they use to describe autistic people after listening to our preferences. I believe no small part of these changes comes from involving autistic people in research. Yet, there is still a long way to go.
AASPIRE is a community-based participatory research (CBPR) group. CBPR is an approach to research in which people from a marginalized community and scientists from the academy work together as co-researchers. CBPR has been around for decades, and it is one of many ways to do research with communities. It is a good solution to problems with research on disadvantaged or underrepresented populations.
When the people doing research “on” a community don’t understand that community’s needs, priorities, or values — and have little of their trust — there is a risk of non-representative samples, faulty assumptions, poor research design, interventions that aren’t useful (or are even unintentionally harmful), and flawed or stigmatizing conclusions. When those conclusions get reported to the public and to other researchers, it reinforces them. For example, it may reinforce a belief that autistic people can’t self-reflect enough to self-report in research, like the reviewer who didn’t know that within the community of autistic adults, thousands of us self-reflect and self-report on our needs and experiences every day.
By instead doing research “with” the community — engaging members of the community authentically as co-researchers — community members are able to offer their expertise from lived experience, as well as communicate their community’s values and priorities to scientists. This can result in research the community wants and has asked for, like AASPIRE’s new research on autistic burnout. It can result in more accessible consent forms and data collection instruments, which means a broader spectrum of people on the spectrum can participate, like our “Partnering” study that enabled people with a wide range of intellectual and developmental disabilities, including autism, to self-report on their experiences with violence. It can result in better relationships between researchers and communities. And it can help give autistic people more power over their own lives and needs.
For all its potential, including autistic people in autism research through approaches like CBPR also comes with risks. One of the biggest risks is tokenizing community team members, either through lack of awareness and habit, or by cutting corners due to the high pressure of research budgets and deadlines. If you’re going to involve autistic people in research and other settings — which I hope you do! — make sure that you give us power even if that means doing things differently or giving up some of your own power. That may change how things are done, for example, meetings where people type instead of speak, giving us extra time to process information, or working with our support staff to make the work accessible. We aren’t just information sources — we are valuable collaborators. This is why the title of this perspective is about authentic engagement.
Autism research that’s co-led by those of us on the spectrum might end up being a little different from research that’s done when we’re not at the table. We might have information about what’s important to us and how to accomplish it that is surprising and new or even the opposite of some current research priorities. But including us can be worth it in creating better research and more effective interventions, supports, and services. It might even change the way people think about autism and autistic people and make the world a more understanding and welcoming place where we can thrive.
Dora Raymaker, Ph.D., is a research assistant professor at Portland State University’s Regional Research Institute, co-director of AASPIRE, associate editor of Autism in Adulthood, a SCOAR member, and Autistic. Their research interests include community-engaged practice, systems thinking, measurement adaptation, and dynamics at the intersection of science, society, and public policy. In application, Dr. Raymaker conducts intervention and services research in collaboration with disability and mental health communities to improve health, well-being, employment, and self-determination, and reduce stigma. Dr. Raymaker also writes fiction with neurodivergent heroes, including science fiction mystery novel, Hoshi and the Red City Circuit.