The secrets of successfully putting together a research paper are almost never straightforward process. Whether it may be seeking ethics approval or finding a sufficient number of survey respondents, the level of effort behind the scenes can almost be superhuman. For our Know Your Normal campaign, a small team of us have been deeply fortunate to have the expertise and understanding of the Centre for Research in Autism Education (CRAE) team, where a combination of autistic people and experienced researchers saw a fully co-produced result. We share our thoughts on just what it was like to make this happen and what others can learn from our example:
· Fern Adams, Youth Patron at Ambitious about Autism (AaA)
· Georgia Harper, Youth Patron at AaA
· Jack Welch, Youth Patron and Vice Chair of Youth Council at AaA
· Dr Laura Crane, Senior Teaching and Engagement Fellow at CRAE
· Professor Liz Pellicano, Professor of Autism Education and Director at CRAE
1. Why was it important to have KYN research co-produced in your opinion?
Fern: It was really important that the research was co-produced in order to make our findings as beneficial as possible for a wide range of people. Often, it seems like research focuses on causation and cures and the medical model of autism, as opposed to issues that are an everyday reality for many of us. By having this research co-produced, we had the unique experience of getting to decide, as a community of young autistic people, what really mattered to us.
It is rare that autistic people themselves decide the research direction and in doing so and selecting mental health, hopefully this research will mean that instead of autistic people simply being studied for research we can hopefully start to raise awareness and have tools in an area that will make an active difference to us. Equally without the co-producing of research we might have been able to sit in a room and say that it is important for us to know more about mental health and autism but then not be able to actively do much about it, at least not on such a scale or with the research skills and ethics needed. Co- producing it meant that we could work as a team.
Liz: In 2013, Tony Charman and I worked on a project called A Future Made Together, which surveyed the landscape of autism research in the UK. We looked in particular at how much had been spent on autism research between 2007 and 2011 and, importantly, what types of projects the money had been spent on. We found that academics’ research focused heavily on ‘basic science’ – understanding the neural and cognitive systems, genetics and other ‘risk’ factors related to autism – rather than on more practical issues that affect autistic people and their families in the here-and-now.
One reason for the imbalance in autism research is that autistic people and their families are rarely involved in helping to make decisions about research – whether that’s about what autism research should focus on, what methods should be used, how it should be implemented, how the results should be interpreted and so on. This needs to change. I feel strongly that we will only get research that is more relevant to autistic people’s lives if we involve them in the research process. And the KYN research is a wonderful example to show that this way of working is possible, on a topic that is so central to many young autistic people. We hope that this will spur other researchers and autistic people to do the same!
2. How did the input of volunteers at Ambitious shape the research design and methodology?
Jack: Even before we considered the terms and outline of research, this was a campaign and issue that volunteers at Ambitious wanted to address as part of what we felt was a growing problem for young autistic people. CRAE enabled us to have a very clear focus for our research proposal and what methods would make it credible, but also the types of questions we wanted to find out from those who did in-depth interviews. We had continuous discussions online through Basecamp [project management site] for our feedback and opinions.
Laura: Often in autism research, it is (non-autistic) researchers who select the topic of the research and decide how it will be carried out. The great thing about this project was that this was all decided by the volunteers – the role of the researchers was simply to advise on how to make the research as methodological rigorous and impactful as possible. The final product was the result of a great team effort.
3. What did you find the experience like of working together?
Georgia: Having never been part of research at this level before, I was nervous about making the co-production work, but the CRAE team put me at ease from day one! It was really interesting to learn about how a research project builds and to see a different side of academia, and I'm so proud of the end result.
Laura: It was brilliant! At CRAE, we’ve recently developed a Starter Pack for autism researchers wanting to engage in participatory research (bit.ly/2vARnS8) and it highlights three core principles: trust, mutual respect, and listening and learning. I think these were key to the success of this partnership.
4. What would you say to other researchers/autistic people about the benefits of working in partnership to find new insights?
Georgia: As the saying goes, nothing about us without us! The dominant conversation about autism neglects to include autistic people all too often, which means there can be a huge gap between what researchers and "awareness" campaigns are doing and what autistic people actually need. Co-producing autism research with autistic people not only helps to set priorities, but can also provide insight into possible accessibility issues, ensuring your research includes and benefits as wide a range of people as possible.
Liz: I would say, ‘don’t be put off!’ I understand these ways of working might be new, and slightly daunting, to researchers in particular. Autistic people and their allies have so much expertise and experience to offer to the research process, exactly as we’ve shown in the Know your Normal project. And it is a wonderful opportunity for autistic people to get to grips with doing research – beyond just being a passive participant or subject in a research project. We need to do more listening to – and learning from – one another.
5. Is there anything we could have perhaps improved or done better in working together?
Fern: With the time we had for the research I think there is very little that could have been improved. Maybe, had time allowed having more autistic young people, with a wider range of backgrounds and intersections involved would be useful, but that could be something for future studies.
Laura: Given the constraints of the project (particularly the short time frame involved!), I think we all did really well. If we collaborated in future (and time/resources weren't an issue), it would be great to have the volunteers take more of an active role in collecting data (e.g., interviewing participants), so they had experience at every stage of the research process.
Elizabeth Archer, Policy and Campaigns Director at Ambitious about Autism:
"Ambitious about Autism is committed to ensuring that autistic young people have a platform to be heard and opportunities to influence change. To be effective at this, they must be able to speak, not just of their own lives – but about how their experiences compare with other autistic peoples. Unfortunately there is very little research out there that is led by autistic people or interested in their experiences and priorities.
That’s why know your normal was so important for us – our youth patrons showed without a doubt not simply that they could undertake research to a high standard – but that the research was more powerful, and more useful as a direct result of their involvement.
We believe that research about autism should involve autistic people in its design and execution as a matter of course – and hope that the partnerships we are creating between universities and our youth panels encourage more researchers to work in a participatory way."
Read more about the Know Your Normal story as part of UCL’s Provost’s Awards Spotlight here.
See Georgia and Jack present their findings on the Know Your Normal research to The Centre for Research in Autism Education below.