Participatory Research

Hi! My name is Laura Lewis and I am a nurse and a researcher at the University of Vermont. I wanted to share an example of one way that working with community partners has made my research more meaningful, respectful, and accessible.

A couple of years ago, I led a research team in a study about what it is like to have a meltdown or a shutdown for autistic adults. When we were done with this study, our team decided to use our findings to create a communication tool that health care providers could use to talk to their patients about meltdowns and shutdowns. We called this tool the Meltdown & Shutdown Scale for Autistic Adults, or the MSSAA. We came up with a form that patients could fill out, answering questions about what their experiences were like with meltdowns and shutdowns. We thought health care providers could use this form to help Autistic patients with any safety risks that they may have when they are having a meltdown or a shutdown.

As a first step to see if this communication tool would be helpful, we surveyed Autistic adults to see what they thought of the MSSAA. We wanted to know if they thought it was easy to use, if it made sense, and if it captured information they thought was important to share with their health care team. We planned to survey about 300 people. But instead we had to stop our survey after just 54 responses, because we already knew the answer: this communication tool was NOT supported by the Autistic community.

As our team tried to understand where we went wrong, we asked a few members of the community to join our research team. These were Autistic adults who had lived experience with meltdowns and shutdowns. They were also well connected in the autism community and could speak to a broader picture of how others might feel about our communication tool. In just a few meetings, these community partners identified major flaws with the tool, flaws that helped us understand the feedback we heard from the community.

For example, these community partners pointed out that the very idea of this tool made it seem like there was a problem with the way that Autistic people responded to stress. It made it seem like the core problem in meltdowns and shutdowns was with the Autistic person – not with the environment that caused them stress to begin with. Our Autistic partners helped us understand how this is offensive to Autistic people, and can actually cause harm in a health care setting.

Our community partners also helped us understand that answering questions on a form might not be an accessible way for all people to communicate with their providers. They helped us understand the importance of offering options for writing in open-ended responses, drawing, and having a conversation with providers, for example.

Finally, and perhaps most importantly, our community partners helped us understand that safety needs to come first. For many Autistic people, the main reason they do not talk to their health care providers about meltdowns and shutdowns is because they do not have a relationship with their provider where they feel safe having these conversations.

Rather than focusing our research on what structured questions to ask patients on a form, we need to start with research that can improve providers’ understanding of autism. We need to work on making health care offices a safe place for Autistic people to share their needs and trust that they will be heard. Until we work on that, any communication tool that we come up with is unlikely to meaningfully help Autistic people.

If we had included community partners on our team at the start, we could have saved a lot of time, effort, and cost – and frankly, we could have conducted better research. Working with community partners on this study and others has transformed the way I collect data and interpret findings. I now work with community partners from the very start of each study I conduct. We work together to develop research questions that are important to improving the lives of Autistic people. These partners also help make sure the ways we conduct our studies are inclusive and accessible. As a researcher, I cannot overstate the value that community partners have added to my work.