Co-producing and participatory action research with young people who are autistic or have a learning disability: navigating institutional processes

Despite a growing interest in taking a participatory or co-research approach to research with young people with a learning disability and/or autism, there is little written about navigating the institutional processes as a doctoral researcher. This paper reports on a PhD study that embraced a participatory action research approach with young people with autism and/or learning disability. It examines and critiques the possibilities of participatory and co-research approaches and the constraints of institutional ethical processes. Drawing on the philosophical framework of epistemic injustice, it offers a reflective account of how university processes and ethics procedures could undermine the co-researcher roles held by the young people. Ethical frameworks rely largely on deficit views of young people with learning disabilities and/or autism, often positioning them as vulnerable, incapable and in need of protection. This paper argues that while ethical procedures are there to keep everyone in the research safe from experiencing harm, sometimes they result in exclusions, reinforcing of stereotypes and distorting power dynamics in participatory research. This paper contributes to debates on research governance and promotes the reimagining of ethics processes which recognise young people with autism or learning disabilities as capable and epistemically competent contributors to knowledge.