“Nothing about us without us”

This is the slogan used by the autistic community to advocate for the involvement of autistic people in planning, executing, and sharing research about autism – a process referred to as co-production (a type of participatory research).

 This researcher’s perspective on co-production

I am a PhD researcher at the University of Edinburgh, and my research focuses on the relationship between sleep and mental health in autistic young people. Sleep and mental health problems are both prevalent issues in the autistic community, particularly starting from early life, and my research aims to gain insight into what drives these issues.

I first came across the above slogan and the ethos of co-producing research roughly two years ago, at the start of my PhD on sleep and mental health in autistic people. My first thought was, “why isn’t everyone in research already doing this?”.

As a neurotypical and able-bodied person, I am aware that I cannot appreciate the struggles of the disability community. However, as a woman, a person of colour, and an immigrant, I can sympathise with the experience of feeling unheard – which is perhaps why I felt so strongly about making co-production an integral part of my PhD from the start.

From a researcher perspective, there are clear practical benefits of co-producing research, such as maximising the relevance of your findings, or optimising data collection strategies. However, I think the biggest benefit comes from the opportunity to connect with the communities for whom you are trying to make a difference. I truly believe that no amount of reading the literature can equal the insight you gain from forming genuine connections with people from the community.

Community perspectives on co-production

No one can explain the importance of co-production better than the co-producers themselves! Below are the views of two autistic members of the co-production team on my PhD, Millie and Margaret, on why this process is important to them.

Millie

As a Psychology undergrad, it is fascinating to see the research process in action and how much thought and consideration goes into the study design; it is clear that the ethics and inclusivity of the research are highly considered. On a more selfish level, co-production has also been beneficial for my personal development and I now feel more confident to say yes to opportunities. It has also helped me to think more critically and share my opinions more articulately.  

I feel proud to be able to share a neurodivergent voice in the research process. Hopefully, because of co-production, it will increase autistic people’s trust in the research and encourage more young people to participate and contribute to this important area of research.

Margaret

Although I have obviously been autistic my entire life, I wasn’t diagnosed until 4 years ago when I was 53 Since then, life has been full of so many ‘light-bulb moments’, as I began to realise that many of the things that I do have a valid reason, and that many other autistic people feel the same and do the same.

As I avidly read more of both the research and mainstream writing I realised how outdated some of the views were, and how plain wrong some of the conclusions were! “If only they had just asked an autistic person, we could tell them exactly how it is” I wailed, and getting involved with co-production allows me to do just that.

Co-production is so important because it allows autistic people of varying ages and life experiences to genuinely have a voice. We can more easily trust the research that we are involved with, rather than that ‘done to us’. I feel that my view and 57 years of experience living my life as an autistic woman can definitely bring something to the table, not only looking back over my life but also looking forward to how I navigate my old age. 

Going forward…

 If you are a researcher and we have convinced you to consider co-producing your research, I recommend that you start by reading this paper, which describes a framework for ethically conducting inclusive research. You can also check out this community partner recruitment pack, which provides practical guidelines on how to recruit and ethically involve community members in your research.