Monday, May 16, 2016

IMFAR 2016: Bridging the Research Gap: Incorporating Autistic Intellect in Research Design & Evaluation

IMFAR 2016: Bridging the Research Gap: Incorporating Autistic Intellect in Research Design & Evaluation

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.

  1. 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.
  2. At Bridging The Research/Application Gap: Incorporating Autistic Intellect in Research Design & Evaluation SIG. #IMFAR2016
  3. Great start to the day at a special interest group on working in partnership with autistic people and their families #IMFAR2016
  4. Need to fast track research by talking to #autistic people, who usually respond to #autism research results with “well, yeah.” #IMFAR2016
  5. "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.
  6. In Australia & the UK, #autistic mothers are losing #autistic children to social services b/c lack of #autism understanding. #IMFAR2016
  7. Science needs to do better by #autistic people/adults now: research shows so many co-occuring health issues, higher suicide risk. #IMFAR2016
  8. We need much more (much more) facilitation of research between #autistic people and researchers: experience, recommendations. #IMFAR2016
  9. "There's no such thing as high-functioning [autism]. There's internalizing & externalizing. Hard for all of us"--Dena Gassner #IMFAR2016
  10. Best practices for #autistic collaboration: Don’t patronize autistic participants, don’t conflate co-occurring traits w/#autism #IMFAR2016
  11. There are some isolated examples of autistic involvement in research but mostly too little, too tokenistic #IMFAR2016
  12. Inclusive research design: Improves the validity of the design, avoids BS (ideally), better access to #autistic populations. #IMFAR2016
  13. Inclusive research improves validity of study, avoids unfeasible studies, helps recruit #actuallyautistic people. #IMFAR2016
  14. Inclusive research design: *actually* addresses needs of autistic community, streamlines path from research to implementation #IMFAR2016
  15. Researchers need to recognize that #autistic identity is not separate from personhood. #IMFAR2016
  16. Researchers: make sure your power dynamic is equalized. (Again, don’t patronize #autistic participants) #IMFAR2016
  17. Also crucial: research best practices should include reimbursing #autistic collaborators for their time and expertise. #IMFAR2016
  18. Don't take advantage of . Reimburse #actuallyautistic collaborators 4 their time & expertise. #IMFAR2016
  19. ... if Dad, who was a selective mute as a kid, has aphasia in part bc of his autism, would that affect his treatment? #IMFAR2016
  20. Researchers: your #autistic participants needs to be diverse. And you need to listen to their feedback about your study. #IMFAR2016
  21. Now, @johnrobison: He’s long been urging scientists to incorporate #autistic perspectives, but was himself recruited to #IMFAR. #IMFAR2016
  22. JER is first openly #autistic voting board member of INSAR, feels like we’re past #autistic tokenism. #IMFAR2016
  23. Appreciate speaker's point selection of collaborators is relevant. Ques re autistic elder r not useful 2 ask a young autistic #IMFAR2016
  24. Expense=barrier for #autistic participants in #IMFAR, INSAR leadership who don’t have institutional supports. Need more funding. #IMFAR2016
  25. JER: #Autism science folks *have* to respect and honor #autistic people, or their world will come “crashing down.” #IMFAR2016
  26. Researchers who study other marginalized communities know are absolutely beholden to them, yet somehow ignore #autistic voices. #IMFAR2016
  27. JER believes #autism research funding should be tied to #autistic faculty member participation as well as #autistic participants. #IMFAR2016
  28. But we have a real problem with #autistic academics being closeted JER thinks better funding could change that. #IMFAR2016
  29. .@johnrobison optimistic about increasing willingness for autistic researchers to come out of the closet #IMFAR2016
  30. JER: #Autism isn’t a younger people thing. Scientists his age are largely still stealth. He wants his tribe flushed out by $$. #IMFAR2016
  31. JER: Going forward: need recruitment and maximization of older #autistic role models. #IMFAR2016
  32. .@johnrobison is neurodiversity scholar in residence at William & Mary university but this option closed to most autistics #IMFAR2016
  33. JER is neurodiversity scholar in residence at William & Mary — without standard academic qualification. Why not other #autistics? #IMFAR2016
  34. Dr. Stephen Shore Autistic Academic, Adelphi Univ. decided to prioritize autistic excellence as area of specialized instruction #IMFAR2016
  35. How can we get past #autsitic tokenism in #autism research? Autistica in UK has autistic participants funding mandate, direction. #IMFAR2016
  36. JER doesn’t think scientists intentionally discriminate against #autistic people, but also don’t compensate them sufficiently. #IMFAR2016
  37. The US Affordable Care Act funds some partnership-based #autism research (e.g., PCORI) as a mandate. (So vote carefully in Nov.) #IMFAR2016
  38. "Stop getting stuck on semantics", create a "spirit of #collaboration and #engagement" between researchers & #autistic people #IMFAR2016
  39. #Autistic research participants: expect accessibility, inclusion, and respect from researchers—but not perfection! (& vice versa) #IMFAR2016
  40. #IMFAR needs to better accommodate/encourage #autistic participation — can have electronic poster sessions, for instance. #IMFAR2016
  41. Strongly recommend checking out this site w editable outputs on proactive autistic engagement ideas  http://www.shapingautismresearch.co.uk/  #IMFAR2016