person-oriented Research in the context of Autism
Autism research is a large and growing field. Researchers study autism through a range of studies, including both biomedical and social science research; both quantitative and qualitative methods; and both child and adult participants. Including people with autism spectrum conditions (ASC) in research is important for several reasons.
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Inclusion leads to good science. When people are not included in research, it is hard to know if the results of a study apply to them. Therefore, including people with autism – children and adults, men and women, and people with a range of support needs – leads to more relevant research findings.
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Respect for disability rights. Including people with autism in research acknowledges their contributions and increases social inclusion by centring the experiences of people with disabilities in research about them. This is often embodied in the phrase "nothing about us, without us."
We are also interested in improving the experiences of people with autism in research that is not about autism at all, so that people on the spectrum are not unfairly excluded from either types of studies.
Our Project
LITERATURE REVIEW
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We found and read >100 papers about autism research ethics to learn what other people have said about it
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We will write here what we've learned from these articles
TASK FORCE
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A task force is a group of people who come together for a short period of time to work on a specific goal
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The goal of this task force is to write a report about the best practices in autism research ethics
TRY IT OUT
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In the future, we will try out these best practices by starting new research studies which use them
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We will ask research participants to tell us what they think about taking part in research
5 GUIDEPOSTS OF PERSON-ORIENTED RESEARCH ETHICS
RESPECT FOR HOLISTIC PERSONHOOD
means valuing what participants have to share and considering their needs & strengths.
EMPOWERMENT IN
DECISION-MAKING
means making it easier for people to make choices of their own free will.
INDIVIDUALIZATION
means making the research process fit the unique needs of each person.
ACKNOWLEDGEMENT OF
LIVED WORLD
means thinking about the world in which participants live.
FOCUS ON RESEARCHER-PARTICIPANT RELATIONSHIPS
means looking at the relationship between researchers and participants.
READ THE REPORT DRAFT
We are pleased to announce that the task force has written a complete draft of our report on autism research ethics, which presents suggestions researchers can use to include people with autism ethically and meaningfully in research studies. You can view the report here. The full draft of the report is only available in English, but we have translated a summary of the suggestions in French which you can view here. We also have staff members available to communicate with you in French about the material if you would like to discuss via phone, email, or in person if you are in Montreal.
We welcome your reactions to any of the suggestions listed in this report, which are divided by guidepost in the table. 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.)
SEE THE VIDEO
In this video, made for the Brain-Child-Partners Conference in Fall 2017, Ariel Cascio describes the person-oriented autism research ethics project.
SEE THE VIDEO
Person-oriented research ethics | L'éthique orientéee vers la personne dans la recherche sur l'autisme
