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…
… enhance autonomy, self-confidence, and self-
determination in the research process?
… maximize the decision-making abilities of potential participants?
… use structures and environments that provide better opportunities for participants to make decisions?
o Use research on decision-making to develop “evidence-based” ethics practices.
When planning research
o Empower people with autism to contribute to research in ways other than providing data.
When doing research
o Begin from the stance that people with autism have a right to participate in research, or to refuse to do so.
o Consider ways in which the setting of a study can make free decision-making harder or easier.
o Specific types of research might require sharing specific types of information.
o Create a consent process which is accessible to people with autism.
o Give potential participants a chance to meet researchers and ask questions and provide explicit opportunities for additional questions throughout the study.
o If others are implicated in the study, include them in conversations about choosing to participate.
o Collect information about who did not consent and why, in order to reflect on the consent process.
Empower decision-making not only in deciding whether or not to participate but also in data collection and write-up.
When sharing research
o Consider ways in which the research process can empower or disempower people in other parts of their lives. For example, results of research can have implications for treatment decisions and genetic results can have implications for reproductive decisions.
o Empower participants to make decisions at the end of a study, such as what individual results to access if any, and whether or not to read published results.
o Invite participants to be included in additional studies while still making it clear that one does not necessarily have to commit to further studies.