Laura's experience

As an autistic person, I’ve always wanted to help with autism research, but the right opportunities never appeared until this participatory group project. According to Autistica’s website, 9 out of 10 autistic people want to participate in research, but much of the time, they don’t get the opportunity to. When you consider that around 1 in 100 people in the UK are autistic (so around 700,000 autistic people in total when applied to current British population numbers) that means a lot of potential research participants and their families are either being overlooked or missing out on taking part in vital research related not just to health and education, but also politics, sociology, history and Disability Studies.

Letting autistic people have direct input with a project related to autism is important, especially if the researcher(s) is/are not autistic. Of course, it’s fine to research and/or talk about autism if you’re not autistic (autism research was originally pioneered by non-autistic researchers, after all). However, researchers and relatives of autistic people can only really explain the ups and downs of autism as outside observers. Only autistic people can really describe what it’s like to be autistic.

Discussing the impact of university on mental health has been liberating to some degree, not just in helping someone with a project related to autism, but also learning that some of the issues I experienced at uni were not unique to me, and I could raise awareness of certain things that the project should consider. Although I am doing a History PhD which does not involve conducting interviews or any other quantitative studies, learning the processes of participatory research has been useful for understanding that aspect of research, and it may be beneficial if I do any future postdoctoral research that involves oral history.

Laura Brownhill

Participatory Research This page is part of the collection 'PhD research'.

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