We are people and so are they: Shared intimacies and the ethics of digital ethnography in autism communities

Abstract

This paper reflects on the three main ethical challenges we faced when conducting digital ethnography in three autism Brazilian communities on Facebook: how to position oneself as a researcher, how to deal with the identity of participants, and how to manage data when anonymity is not enforced. After careful consideration of these issues and taking into consideration questions of authorship and vulnerability, we concluded that, firstly, as researchers, we wanted to be more than mere observers of our participants so we aimed for a mutual sharing and involvement between participants and researchers. Secondly, we believe that voice and authorship matter, so we gave our interviewees the choice of being anonymised or not. Finally, we had in mind that our participants may not be fully aware of the consequences of academic publishing, therefore sensitive topics as well as data gathered in the communities were always anonymised.