Empowerment in decision-making for autistic people in research

M. Ariel Cascio, Jonathan A. Weiss, Eric Racine

Research output: Contribution to journalArticlepeer-review

8 Scopus citations

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.Points of interest This article talks about ethics in autism research. It focuses on the importance of people with autism having the power to make choices about research. It describes what published articles have said about this issue. Making choices about research includes not only the choice to take part in a study or not, but also many other choices before, during, and after the study. The way that this article talks about research ethics helps achieve goals of many autistic people and disabled people to be included.

Original languageEnglish
Pages (from-to)100-144
Number of pages45
JournalDisability and Society
Volume36
Issue number1
DOIs
StatePublished - 2021

Keywords

  • Research ethics
  • autism
  • empowerment
  • informed consent

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