Ethical Challenges in Participatory Research With Autistic Adults in Israel

Abstract

Contemporary calls for participatory research raise unique ethical questions. Our semi-participatory mixed-methodology study of the needs of autistic adults in Israel utilized an advisory committee of autistic persons. This article discusses three fundamental ethical issues that emerged in the study. First, employing formal diagnosis and legal guardian approval as inclusion criteria may result in the unjust exclusion of self-diagnosed autistics and those who are cognitively able to consent and participate. Second, adopting a participatory research approach does not in itself guarantee participatory justice; the representation of diverse groups from the community must be ensured. Finally, regarding autism spectrum disorder (ASD) as a medical diagnosis requires indisputable confidentiality which may conflict with the personal choice to waive anonymity and be recognized by name. Researchers and ethical committees should take these ethical challenges into account when conducting and reviewing studies with and about autistic adults.