The Importance of Lay Involvement

Our collaborator and adviser Mair Elliott has written a reflection on her experience with and the importance of participatory research:

A lot of my personal life has been taken up by illness, trapped in a state of being unable to eat properly. An eating disorder does not only ruin your body, it ruins your whole life. When even professional help doesn’t make a difference, it can feel overwhelmingly lonely and scary. I am lucky to have gotten my eating disorder into a manageable state; this has allowed me to use my experience to inform this research project into the links between autism and anorexia nervosa.

I wanted to use the negative experiences I’ve had for something positive. Being a lay person on this research team allowed me to do that. Contributing to research than may help others be better informed, receive better treatment and care, and ultimately recover from their own eating difficulties, is deeply rewarding. Knowing how my own eating difficulties manifested and how I felt when unwell meant I had a unique perspective to bring to the research team. I could help structure interview questions, adapt and reword documents and paperwork for participants and be a part of discussions about the data and results. The research team made me feel welcome and I felt my suggestions were important to the team and overall project.

Sometimes, scientific research can seem daunting, especially if you are not a trained scientist or have no experience in research. However, research is the first step in improving the lives of people across the world. Research allows us to better recognise and understand matters which affect people. What makes research more relevant and impactful is lay involvement. Having people who know and understand the topic of research from a personal perspective adds a new and higher level of insight.

Getting involved in research makes me feel nervous at the start; I often wonder if I’m ‘qualified enough’, or if I’m ‘smart enough’ to help with research. However, I always surprise myself with how much I can help. My point is, lay involvement, when done properly, enhances research. If you are a person wanting to use your own personal experiences to improve things for others, get involved in research.

I strongly believe that this research will help inform further research and go on to help other autistic women with eating disorders. Hopefully, this research will help ensure that other autistic women don’t feel as scared and alone as I did. I am really proud to have been a part of the team and I look forward to seeing where this research will go on to have impact in the lives of autistic people.

Mair Elliot.

Mair is an autistic person who has been in recovery from an eating disorder for 2 years. She is a young patient activist, speaking openly about life with mental illness and autism. Her activism includes public speaking, trying to affect change in mental health and/or autism services and contributing to research.

You can find out more about her work on her website mairelliott.com and on Twitter @mairelliott1.

The SEDAF team is very grateful for our autistic collaborators involvement. Their insights based on their own lived experience and their knowledge of the experiences of others in their community are invaluable to this research!

Read our latest publication that resulted from our collaboration with Mair here. We have also written a lay summary, which can be found on this blog.