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IMFAR 2016: Bridging the Research Gap: Incorporating Autistic Intellect in Research Design & Evaluation
Dena L. Gassner and Stephen Shore, Alexa Pohl and John Elder Robison discussed the importance of including autistic people in all areas of the autism research process. Unfortunately, session catalyst Monique Blakemore was unable to attend IMFAR due to funding hiccups.
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Incorporating #Autistic Intellect #IMFAR2016 SIG featuring @AlexaPohl, Dena Gassner, @johnrobison, & @Tumbalaika: pic.twitter.com/Ex6AqkQhKu
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Special Interest Group (SIG) description: Recent IMFAR gatherings have emphasized the need to close the gap between the bench and the community in regard to autism outcomes. This SIG seeks to create dialogue about what autistic individuals can bring to the research bench as contributors to design, analysis and review of potential research. One case example; a study on autistic women wherein such collaboration enhanced the quality and outcomes will be shared. This paradigm shift from "for people with autism" to "with autistic collaboration" is key in order to target, prioritize and expedite proactive outcomes. We will also discuss making these situations meaningful for the person with autism, rather than tokenistic or demeaning in nature. Finally, we will discuss changes needed to insure an accessible and inclusive workplace for autistic researchers.
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At Bridging The Research/Application Gap: Incorporating Autistic Intellect in Research Design & Evaluation SIG. #IMFAR2016
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Great start to the day at a special interest group on working in partnership with autistic people and their families #IMFAR2016
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Need to fast track research by talking to #autistic people, who usually respond to #autism research results with “well, yeah.” #IMFAR2016
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"Well, yeah" example: Spectrum Magazine reported on IMFAR 2016 research indicating autistic people have "unusual sensory processing" even during basic tasks. The Thinking Person's Guide to Autism Facebook forum on the article contains 60+ comments, mostly confirmations, mostly from autistic people.
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In Australia & the UK, #autistic mothers are losing #autistic children to social services b/c lack of #autism understanding. #IMFAR2016
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Science needs to do better by #autistic people/adults now: research shows so many co-occuring health issues, higher suicide risk. #IMFAR2016
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We need much more (much more) facilitation of research between #autistic people and researchers: experience, recommendations. #IMFAR2016
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“There’s no such thing as high-functioning [autism]. There’s internalizing & externalizing. Hard for all of us”–Dena Gassner #IMFAR2016
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Best practices for #autistic collaboration: Don’t patronize autistic participants, don’t conflate co-occurring traits w/#autism #IMFAR2016
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My @Spectrumgo article on how researchers can better listen to #autistic people & their families: https://spectrumnews.org/opinion/viewpoint/before-talking-about-autism-listen-to-families/ … #IMFAR2016
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There are some isolated examples of autistic involvement in research but mostly too little, too tokenistic #IMFAR2016
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Inclusive research design: Improves the validity of the design, avoids BS (ideally), better access to #autistic populations. #IMFAR2016
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Inclusive research improves validity of study, avoids unfeasible studies, helps recruit #actuallyautistic people. #IMFAR2016
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Inclusive research design: *actually* addresses needs of autistic community, streamlines path from research to implementation #IMFAR2016
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Researchers need to recognize that #autistic identity is not separate from personhood. #IMFAR2016
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Researchers: make sure your power dynamic is equalized. (Again, don’t patronize #autistic participants) #IMFAR2016
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Also crucial: research best practices should include reimbursing #autistic collaborators for their time and expertise. #IMFAR2016
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Don’t take advantage of . Reimburse #actuallyautistic collaborators 4 their time & expertise. #IMFAR2016
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Finally: If researchers going to work with #autistic people, need to accommodate #autism, for example: http://www.thinkingautismguide.com/2016/04/when-chairs-are-enemy.html … #IMFAR2016
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… if Dad, who was a selective mute as a kid, has aphasia in part bc of his autism, would that affect his treatment? #IMFAR2016
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Avoid only recruiting #autistic people who agree with you. #IMFAR2016
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Researchers: your #autistic participants needs to be diverse. And you need to listen to their feedback about your study. #IMFAR2016
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Now, @johnrobison: He’s long been urging scientists to incorporate #autistic perspectives, but was himself recruited to #IMFAR. #IMFAR2016
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JER is first openly #autistic voting board member of INSAR, feels like we’re past #autistic tokenism. #IMFAR2016
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Appreciate speaker’s point selection of collaborators is relevant. Ques re autistic elder r not useful 2 ask a young autistic #IMFAR2016
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Expense=barrier for #autistic participants in #IMFAR, INSAR leadership who don’t have institutional supports. Need more funding. #IMFAR2016
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JER: #Autism science folks *have* to respect and honor #autistic people, or their world will come “crashing down.” #IMFAR2016
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Researchers who study other marginalized communities know are absolutely beholden to them, yet somehow ignore #autistic voices. #IMFAR2016
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Why do #autism researchers think they can say such awful things about #autistic people? http://www.blogher.com/why-do-autism-experts-say-such-awful-things … #IMFAR2016
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JER believes #autism research funding should be tied to #autistic faculty member participation as well as #autistic participants. #IMFAR2016
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But we have a real problem with #autistic academics being closeted JER thinks better funding could change that. #IMFAR2016
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.@johnrobison optimistic about increasing willingness for autistic researchers to come out of the closet #IMFAR2016
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JER: #Autism isn’t a younger people thing. Scientists his age are largely still stealth. He wants his tribe flushed out by $$. #IMFAR2016
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JER: Going forward: need recruitment and maximization of older #autistic role models. #IMFAR2016
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.@johnrobison is neurodiversity scholar in residence at William & Mary university but this option closed to most autistics #IMFAR2016
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JER is neurodiversity scholar in residence at William & Mary — without standard academic qualification. Why not other #autistics? #IMFAR2016
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Now: Stephen Shore: He *is* an academic faculty member. #IMFAR2016
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Dr. Stephen Shore Autistic Academic, Adelphi Univ. decided to prioritize autistic excellence as area of specialized instruction #IMFAR2016
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How can we get past #autsitic tokenism in #autism research? Autistica in UK has autistic participants funding mandate, direction. #IMFAR2016
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JER doesn’t think scientists intentionally discriminate against #autistic people, but also don’t compensate them sufficiently. #IMFAR2016
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The US Affordable Care Act funds some partnership-based #autism research (e.g., PCORI) as a mandate. (So vote carefully in Nov.) #IMFAR2016
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“Stop getting stuck on semantics”, create a “spirit of #collaboration and #engagement” between researchers & #autistic people #IMFAR2016
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Re: Not getting stuck on #autism semantics unless it matters: On “language dickery,” via @rsocialskills: https://amorpha.dreamwidth.org/1534.html #IMFAR2016
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#Autistic research participants: expect accessibility, inclusion, and respect from researchers—but not perfection! (& vice versa) #IMFAR2016
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#IMFAR needs to better accommodate/encourage #autistic participation — can have electronic poster sessions, for instance. #IMFAR2016
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Strongly recommend checking out this site w editable outputs on proactive autistic engagement ideas http://www.shapingautismresearch.co.uk/
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@SueReviews @ResearchAutism Research Seminar Series in UK ‘Shaping Autism Research’ promoting #engagement http://bit.ly/1R1PCi1 #IMFAR2016