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…
… respect the factors that influence participants’ needs and decisions, including individual, family, and community beliefs, norms, and values?
… recognize my own beliefs, norms, and values and how they may impact the research encounter?
… use culturally appropriate and non-stigmatizing research protocols?
… attend to present, past, and future experiences of participants?
… be aware of the role of family and friends and the potential need or desire for their involvement?
o Acknowledge stigma, stereotypes, and past experiences of having been excluded that impact the research process.
o If participants want, involve significant others who play an important role in their lives, and may impact the research process.
When planning research
o Acknowledge that many participants encounter research while striving to access care, treatment, and intervention which impacts research ethics.
o Recognize broader autism and autistic communities such as advocacy groups or social movements, which have a stake in the research process.
o Acknowledge that people with autism have historically been harmed in research and clinical settings, which may cause hesitance about research.
o Integrate other demographic factors of participants that matter in research.
o Address logistical challenges to participation.
When doing research
o Consider the important role the context or environment plays in research.
o Know that the internet as an important social setting for many autistic people.
o Reflect on the world in which researchers work, which also impacts the research process through logistical and regulatory barriers.
When sharing research
o When writing up results, be mindful of findings or wording that might be stigmatizing.