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 …
… recognize the personhood and agency of all participants, even those with potential or actual impairments of decision-making capacity?
… take a strengths-based approach that focuses on capability and values the potential contributions of all individuals to research questions that concern them?
… respect and take into consideration the contributions of research participants?
… solicit feedback of the target population?
… design the research process to take into consideration needs, preferences, or priorities that might impact persons in this population?
o Use language which is non-judgmental and non-stigmatizing.
o Conduct empirical research about participants’ views of research and solicit feedback from participants and other stakeholders on research design.
When planning research
o Make topics, measures, and outcomes meaningful (and understandable) to people with autism.
o Create research designs and data collection strategies that address the autism-specific needs of participants.
When doing research
o Evaluate the potential role of diagnostic accuracy as an issue in sampling and recruitment.
o Ensure participation is not overburdening.
o Actively include people with autism as participants themselves rather than just topics of research.
o Design recruitment strategies to address autism-specific needs of participants.
o Prepare participants on the spectrum for taking part in the study or for procedures in advance.
When sharing research
o Disseminate results in an accessible format for people with autism.
o Involve people with autism, stakeholders, and stakeholder organizations in the dissemination of findings.
o As always, respect privacy and confidentiality.