Excited to be "at" the first #AutismJournalClub. @milton_damian presenting on the development of the #ParticipatoryAutismResearchCollective (emerald.com/insight/conten…). I've not had the pleasure to see Dr. Milton present before, so I'm quite excited! #PARC #AutisticsInAcademia
"How much interactional expertise is possible between autistic & non-autistic people? (Milton, 2014)"
"Expertise in what it is to be autistic would take immersion.. extent such immersion is possible [is questionable] for non-aut people, doubtful many researchers have made effort"
"Expertise in what it is to be autistic would take immersion.. extent such immersion is possible [is questionable] for non-aut people, doubtful many researchers have made effort"
A main objective of #ParticipatoryResearch is ceding power from the researcher to the participants.
PARC was preceded by the Theorizing Autism project, which is now on my list to check out! #AutismJournalClub
PARC was preceded by the Theorizing Autism project, which is now on my list to check out! #AutismJournalClub
#PARC Goals:
-address isolation felt by many autistic researchers
-ensure that research carried out by autistic people can be found & used
-raise reputation of participatory research methods in the field
-critically comment on autism research which doesn't empower autistic people
-address isolation felt by many autistic researchers
-ensure that research carried out by autistic people can be found & used
-raise reputation of participatory research methods in the field
-critically comment on autism research which doesn't empower autistic people
Seems one of the biggest challenges #PARC has is finding funding for participatory research. This is 1 of my worries moving towards more participatory research in my lab. We have ideas, with the internet we have access to #ActuallyAutistic people, but where's the $ to pay them?
Discussion Q1:
How can we as a research community build small steps towards participation, yet at the same time avoid tokenistic gestures?
How can we as a research community build small steps towards participation, yet at the same time avoid tokenistic gestures?
Discussion Q2:
How do we help each other with the emotional labor of being an #ActuallyAutistic researcher researching autism (taking into account how we are often written about)?
How do we help each other with the emotional labor of being an #ActuallyAutistic researcher researching autism (taking into account how we are often written about)?
Discussion Q3 and Q4:
How can we access funding and work with allies?
What are the potential benefits of being an "outsider researcher"? #AutismJournalClub
How can we access funding and work with allies?
What are the potential benefits of being an "outsider researcher"? #AutismJournalClub
Some comments point out that participation should be as early as possible (idea conceptualization), others mention involvement in interpretation of findings.
Mentioning definitions of tokenism, Armstein's 1969 model (citizenshandbook.org/arnsteinsladde…)
Mentioning definitions of tokenism, Armstein's 1969 model (citizenshandbook.org/arnsteinsladde…)
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