How Working with Experts by Experience Transforms Academics' Perspectives
Researchers working with “experts by experience” often talk about the benefits of this for research outputs, such as results that are more relevant for the people the research intended to help. I am a research assistant on a programme pioneering a new model for participatory research on autism and Attention Deficit Hyperactivity Disorder (ADHD).
Participatory research ensures people with lived experience of neurodivergence are involved in the research process. I want to highlight an often-overlooked benefit: how working with “experts by experience” in meaningful ways can shift academics’ understanding of their research practice and themselves.
RE-STAR: Pioneering a new model for participatory research
RE-STAR is a research programme aiming to find new ways to reduce depression risk for ADHD and autistic adolescents, focusing on the role of school environments in neurodivergent young people’s emotional lives. This focus is important because autistic and ADHD young people are at greater risk for depression. Typically, this is framed as a deficit in neurodivergent young people - our research challenges this narrative by exploring how upsetting events at school can compound to create an “Emotional Burden” for young people.
This research topic was shaped by input from our Youth Researcher Panel (Y-RP), a group of autistic and/or ADHD young adults who have been deeply involved in our study since its conception. Y-RP members do far more than just advise the academic staff, but work directly alongside us on a range of activities including assisting with data collection (e.g., through co-interviewing participants, supporting participants in EEG sessions), analysing data, and writing papers.
While the impact of the Y-RP on RE-STAR's focus and activities is clear, I wanted to capture how working closely with 'experts by experience' impacts academics and how they think about the work they do. I interviewed three academics at two time points to hear their reflections on working with the Y-RP. Below, I share some common themes that emerged alongside reflections in their own words.
The Learning Curve
In my conversations, I found researchers at first felt uncertain about working in a new way, and this provoked anxiety. Some were unsure how this research process would differ from their existing ideas of participatory research or if the results would be meaningful. “I was a bit sceptical in terms of, 'Okay, I know that this is going to be participatory research. I know that people have very good intentions, but how far can we move things?'”
Working in a new, collaborative way with a wider range of people required researchers to change the ways they worked and communicated. Sometimes conflict between academic and lived-experience researchers arose over mismatched expectations and unclear communication. Researchers expressed appreciation for how these conflicts pushed them to grow. When describing resolving one such conflict, a researcher explained, “What I really appreciate out of that experience was the fact that we had that honest interaction... sometimes it is also good to have those challenges because it makes you think, especially on your feet.”
Generally, as the project progressed, academic researchers started feeling more confident. As one researcher stated, “Coming from a more conventional research paradigm, it took me some time to try and do things differently, in a way that feels safe for me as well. At the moment, I'm feeling more and more comfortable in working in these different ways and also working in more creative ways.”
Appreciation of What Deeper Participation Means
Researchers consistently expressed that their perceptions of what participatory research is had changed while working with the Y-RP.
“My thinking has shifted completely because I could see how many more opportunities we can create for participants, young people, how unlimited the opportunities are and the almost emancipatory role that arts can have in that.”
This new appreciation of what deeper participation can mean came with an understanding that this way of working should strive to be reciprocal rather than extractive. Researchers spent a good amount of time and energy thinking about how to create positive experiences for Y-RP members, including how to incorporate upskilling and ensure feedback is taken on board. “We have been quite careful about scaffolding and sort of developing their skills so that they're getting something out of it rather than us just taking from them and using them as a resource.”
Another researcher similarly reflected “[I] remind myself that we have an equal responsibility as researchers that when we ask for non-academic collaborators' feedback we really need to do something with this feedback. We really need to take action.”
Ethical considerations for researchers extended into thinking about what was fair to ask of Y-RPers, with one researcher pondering, “The fact that the Y-RP researchers are not fully employed. So, this dilemma: how much we can expect from them? And, how we can involve them in ways that feel realistic? How we can have realistic expectations?”
Challenging Conventions
Working in a truly collaborative way challenged research conventions. One of the clearest manifestations of this in RE-STAR is around language, with researchers changing the terminology they were at one point trained to use after Y-RP input.
“It's just when you're writing really quickly, you fall back into old habits. And so sometimes that's really good to be reminded and have stuff flipped back on its head.”
Another researcher described how this influenced work outside of RE-STAR: “I submitted the paper before, long before I got into RE-STAR. So when I got the review back, I read my paper again, and... I made conscious decisions to change all those wordings: deficit, impairment” based on the learning they had taken from working with the Y-RP.
Y-RP members also challenged “our existing theories on lots of things,” leading researchers to reframe their research practices. This included rethinking study designs through discussions with YRP members. Working with new perspectives led researchers to examine their methodologies from different angles, leading to a “more complete” picture.
“And that's what we really want to see out of science, really, isn't it?”
Personal Perspective Shifting
Researchers enjoyed having the chance to learn from multiple perspectives on the project. One member reflected, “Even though it's challenging to work with so many different disciplines and personalities and even, you know, neurodivergences, that's actually what makes it stimulating.”
Neurodivergent researchers found the experience of discussing and learning with neurodivergent young people to be affirming and inspiring. “It is an exciting time to be part of ...the neurodiverse population because the movement has taken off so much... and that's because of people such as those in the YRAP group; they're just amazing. They're the vehicle of the movement.”
Finally, the researchers agreed the experience had a profound impact on how they think about their work. “The whole journey has been very transformative to me. I think I've been growing up, both as a researcher and a person. I can already see how differently we do things and how different our results can be. I feel that working with people, it's probably the only way to bring real change in research, real change that goes beyond academia, that can have a real impact on people's lives and young people's lives.”
Conclusion
From my discussions with my colleagues, it’s clear that working collaboratively with a multitude of perspectives, experiences, and styles has a profound impact. In RE-STAR, our goal of creating a research process that goes beyond participatory invites reflection, innovation, and personal transformation. While the process can be challenging, the benefits extend beyond the project itself, shaping how academic researchers view their work and its possibilities to invoke change.
For me, working on RE-STAR has expanded my conceptions of what research is and can be. While it’s important to share your findings in papers and talk to academics at conferences, the research process, alongside the relationships it builds and skills it develops, is just as valuable.
You can find out more about how RE-STAR and other projects are involving young people in research at our upcoming event on Feb 21st in London - Putting Our Heads Together: Mental Health Research With and For Young People. Find out more here.
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