Abstract: Research ethics is an important part of any study. Ethics goes beyond ethics committee approval and consent documents. It addresses broader issues of respect, inclusion, and empowerment in the everyday context of research. This article focuses on everyday aspects of research ethics for studies involving autistic participants. It draws on a review of the literature and a process of ethical deliberation involving a task force of researchers, professionals, autistic self-advocates, and parents. These methods led to the creation of suggestions for researchers. This article describes the community engagement process, briefly presents the task force suggestions, and provides more detailed discussion of select items for illustration. Suggestions are organized around five “person-oriented research ethics” guideposts: (1) individualization (e.g. providing individualized support for participants), (2) acknowledgment of lived world (e.g. acknowledging barriers to care that impact research ethics), (3) empowerment in decision-making (e.g. creating accessible consent processes that address specific communication needs), (4) respect for holistic personhood (e.g. addressing sensory and processing needs and strengths), and (5) focus on researcher–participant relationships (e.g. involving autistic people in ways other than research participants, including but not limited to via participatory research). This project highlights the value of researcher–community partnerships in discussions about research ethics.

 

Cascio, M. A., Weiss, J. A., & Racine, E. (2020). Person-oriented ethics for autism research: Creating best practices through engagement with autism and autistic communities. Autism. https://doi.org/10.1177/1362361320918763

 

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