Abstract: Empowerment in research is important in many autism and autistic communities and an important part of ‘nothing about us without us’. It is also an important component of person-oriented research ethics. This article reviews the literature on ethics in autism research for information related to decision-making empowerment for autistic people. A review of 81 articles reveals several themes and specific strategies. Empowerment is important for, but also goes beyond, establishing informed consent. Empowerment is a form of participant and community engagement, and necessarily shaped by specific context. The view of research ethics put forth in this article envisions ethics as a potential avenue for empowerment, where research participants are able to decide how to be involved and to shape research processes and contexts. This view of research ethics is aligned with the aspirations of many in advocacy communities, though it may not correspond to conventional understandings of research ethics.
Cascio Ariel, Weiss Jonathan, Racine Eric. Empowerment in decision-making for autistic people in research. Disability and Society, 2020. https://doi.org/10.1080/09687599.2020.1712189 / https://www.tandfonline.com/eprint/KGZ7WER8VZYMDDCX7WUX/full?target=10.1080/09687599.2020.1712189.
PORTRAIT DE RECHERCHE (INFOGRAPHIE)