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Hannah Hobson, Audrey Linden, Laura Crane, Tamara Kalandadze (2023). Towards reproducible and respectful autism research: Combining open and participatory autism research practices. Research in Autism Spectrum Disorders, 106, 102196. Elsevier BV.
Abstract
Open research broadly refers to a set of practices that aim to increase transparency, rigor, reproducibility and inclusivity of research. Participatory research refers to incorporating the views and sharing power with the autism community to decide what research gets done, how it is done and how it is implemented. There is growing interest in both open and participatory practices in autism research. To date, however, these practices have tended to be considered separately. In this paper, we outline the value of both open and participatory approaches to the autism research field, highlighting key points of overlap. We propose three core principles underpinning open and participatory autism research: (1) the need for adequate expertise and infrastructure to facilitate high quality research, (2) the need for a greater degree of accessibility at all stages of the research process, and (3) the need to foster trusting relationships between the autistic and research communities. There are various challenges and opportunities of adopting open and participatory principles in autism research. We hope our principles support researchers to embed these approaches more fully within their work.
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