We have developed the following list of suggestions (actions and reflections) for researchers based on this guidepost.
We welcome your reactions to any of the suggestions listed. We want to hear both good and bad reactions that you are willing to let us know about and perhaps use as examples in future version of the report or trainings for researchers.
Please post your reactions in the forum, or contact us by any other means (see our contact page.)
How do I…
… pay attention to the power dynamics involved in research?
… build and maintain trust and rapport between myself, participants, and participant communities?
… recognize the sociological, economic, and political factors that influence these relationships?
o Create and maintain open communication.
o Involve people with autism and their communities in research in other ways than as participants.
o Build relationships not just with participants, proxies, and gatekeepers, but also with broader communities.
When planning research
o Include attention to relationships in animal research on autism as well, because the research questions and study results impact autistic people and communities.
o Reflect on the role of researchers in the study.
o Account for any particular professional or personal connections with autism.
o Account for a history of conflict between researchers and autism communities that can generate mistrust.
o Build rapport before a study starts.
o Build relationships with people other than the participant, as necessary
o Be knowledgeable about or experienced with autism either professionally or personally.
When doing research
o Attend to power imbalances between researchers and participants which may make participants particularly vulnerable in the course of a study.
o Consider the value that relationships with researchers provide participants in terms of local community connections.
o Maintain rapport, which has consequences for recruitment and data collection.
o Be prepared for and manage emotional experiences, as data collection can be emotional for participants.
o Take responsibility for communication of ethics information.
When sharing research
o Attend to important relationship concerns when a study is over, about returning results to participants, formalizing a good-bye, and maintaining good relations after. Follow up by sharing impacts of research.
o Read the writings of research participants about their experiences participating in research.
o Create research communities which can be a form of public engagement.