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

Shannon Rosa

Mon, May 23 2016 18:26:57

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. cimmp9eugaaukjk-3015088

    Incorporating #Autistic Intellect #IMFAR2016 SIG featuring @AlexaPohl, Dena Gassner, @johnrobison, & @Tumbalaika:



    Mon, May 16 2016 19:58:32

  2. 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.

  3. thinkingautism


    At Bridging The Research/Application Gap: Incorporating Autistic Intellect in Research Design & Evaluation SIG. #IMFAR2016

    Sat, May 14 2016 11:27:22

  4. SueReviews

    Sue Fletcher-Watson@SueReviews

    Great start to the day at a special interest group on working in partnership with autistic people and their families #IMFAR2016

    Sat, May 14 2016 11:37:01

  5. thinkingautism


    Need to fast track research by talking to #autistic people, who usually respond to #autism research results with “well, yeah.” #IMFAR2016

    Sat, May 14 2016 11:32:53

  6. "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.

  7. thinkingautism


    In Australia & the UK, #autistic mothers are losing #autistic children to social services b/c lack of #autism understanding. #IMFAR2016

    Sat, May 14 2016 11:34:02

  8. thinkingautism


    Science needs to do better by #autistic people/adults now: research shows so many co-occuring health issues, higher suicide risk. #IMFAR2016

    Sat, May 14 2016 11:35:19

  9. thinkingautism


    We need much more (much more) facilitation of research between #autistic people and researchers: experience, recommendations. #IMFAR2016

    Sat, May 14 2016 11:36:31

  10. Aspieadvocate

    Carol Greenburg@Aspieadvocate

    “There’s no such thing as high-functioning [autism]. There’s internalizing & externalizing. Hard for all of us”–Dena Gassner #IMFAR2016

    Sat, May 14 2016 11:38:06

  11. thinkingautism


    Best practices for #autistic collaboration: Don’t patronize autistic participants, don’t conflate co-occurring traits w/#autism #IMFAR2016

    Sat, May 14 2016 11:42:15

  12. thinkingautism


    My @Spectrumgo article on how researchers can better listen to #autistic people & their families:  #IMFAR2016

    Sat, May 14 2016 11:43:15

  13. SueReviews

    Sue Fletcher-Watson@SueReviews

    There are some isolated examples of autistic involvement in research but mostly too little, too tokenistic #IMFAR2016

    Sat, May 14 2016 11:44:10

  14. thinkingautism


    Inclusive research design: Improves the validity of the design, avoids BS (ideally), better access to #autistic populations. #IMFAR2016

    Sat, May 14 2016 11:44:58

  15. Aspieadvocate

    Carol Greenburg@Aspieadvocate

    Inclusive research improves validity of study, avoids unfeasible studies, helps recruit #actuallyautistic people. #IMFAR2016

    Sat, May 14 2016 11:45:34

  16. shannonrosa

    Shannon Rosa@shannonrosa

    Inclusive research design: *actually* addresses needs of autistic community, streamlines path from research to implementation #IMFAR2016

    Sat, May 14 2016 11:46:06

  17. thinkingautism


    Researchers need to recognize that #autistic identity is not separate from personhood. #IMFAR2016

    Sat, May 14 2016 11:46:36

  18. thinkingautism


    Researchers: make sure your power dynamic is equalized. (Again, don’t patronize #autistic participants) #IMFAR2016

    Sat, May 14 2016 11:47:25

  19. thinkingautism


    Also crucial: research best practices should include reimbursing #autistic collaborators for their time and expertise. #IMFAR2016

    Sat, May 14 2016 11:48:17

  20. Aspieadvocate

    Carol Greenburg@Aspieadvocate

    Don’t take advantage of . Reimburse #actuallyautistic collaborators 4 their time & expertise. #IMFAR2016

    Sat, May 14 2016 11:48:54

  21. thinkingautism


    Finally: If researchers going to work with #autistic people, need to accommodate #autism, for example:  #IMFAR2016

    Sat, May 14 2016 11:49:08

  22. Aspieadvocate

    Carol Greenburg@Aspieadvocate

    … if Dad, who was a selective mute as a kid, has aphasia in part bc of his autism, would that affect his treatment? #IMFAR2016

    Sat, May 14 2016 11:49:50

  23. thinkingautism


    Avoid only recruiting #autistic people who agree with you. #IMFAR2016

    Sat, May 14 2016 11:49:47

  24. thinkingautism


    Researchers: your #autistic participants needs to be diverse. And you need to listen to their feedback about your study. #IMFAR2016

    Sat, May 14 2016 11:50:39

  25. thinkingautism


    Now, @johnrobison: He’s long been urging scientists to incorporate #autistic perspectives, but was himself recruited to #IMFAR. #IMFAR2016

    Sat, May 14 2016 11:53:45

  26. thinkingautism


    JER is first openly #autistic voting board member of INSAR, feels like we’re past #autistic tokenism. #IMFAR2016

    Sat, May 14 2016 11:54:51

  27. Aspieadvocate

    Carol Greenburg@Aspieadvocate

    Appreciate speaker’s point selection of collaborators is relevant. Ques re autistic elder r not useful 2 ask a young autistic #IMFAR2016

    Sat, May 14 2016 11:54:39

  28. thinkingautism


    Expense=barrier for #autistic participants in #IMFAR, INSAR leadership who don’t have institutional supports. Need more funding. #IMFAR2016

    Sat, May 14 2016 11:57:23

  29. thinkingautism


    JER: #Autism science folks *have* to respect and honor #autistic people, or their world will come “crashing down.” #IMFAR2016

    Sat, May 14 2016 11:58:28

  30. thinkingautism


    Researchers who study other marginalized communities know are absolutely beholden to them, yet somehow ignore #autistic voices. #IMFAR2016

    Sat, May 14 2016 11:59:57

  31. shannonrosa

    Shannon Rosa@shannonrosa

    Why do #autism researchers think they can say such awful things about #autistic people?  #IMFAR2016

    Sat, May 14 2016 12:00:47

  32. thinkingautism


    JER believes #autism research funding should be tied to #autistic faculty member participation as well as #autistic participants. #IMFAR2016

    Sat, May 14 2016 12:02:23

  33. thinkingautism


    But we have a real problem with #autistic academics being closeted JER thinks better funding could change that. #IMFAR2016

    Sat, May 14 2016 12:03:11

  34. SueReviews

    Sue Fletcher-Watson@SueReviews

    .@johnrobison optimistic about increasing willingness for autistic researchers to come out of the closet #IMFAR2016

    Sat, May 14 2016 12:04:05

  35. thinkingautism


    JER: #Autism isn’t a younger people thing. Scientists his age are largely still stealth. He wants his tribe flushed out by $$. #IMFAR2016

    Sat, May 14 2016 12:04:01

  36. thinkingautism


    JER: Going forward: need recruitment and maximization of older #autistic role models. #IMFAR2016

    Sat, May 14 2016 12:05:15

  37. SueReviews

    Sue Fletcher-Watson@SueReviews

    .@johnrobison is neurodiversity scholar in residence at William & Mary university but this option closed to most autistics #IMFAR2016

    Sat, May 14 2016 12:06:02

  38. thinkingautism


    JER is neurodiversity scholar in residence at William & Mary — without standard academic qualification. Why not other #autistics? #IMFAR2016

    Sat, May 14 2016 12:07:07

  39. thinkingautism


    Now: Stephen Shore: He *is* an academic faculty member. #IMFAR2016

    Sat, May 14 2016 12:14:33

  40. Aspieadvocate

    Carol Greenburg@Aspieadvocate

    Dr. Stephen Shore Autistic Academic, Adelphi Univ. decided to prioritize autistic excellence as area of specialized instruction #IMFAR2016

    Sat, May 14 2016 12:16:21

  41. shannonrosa

    Shannon Rosa@shannonrosa

    How can we get past #autsitic tokenism in #autism research? Autistica in UK has autistic participants funding mandate, direction. #IMFAR2016

    Sat, May 14 2016 12:18:37

  42. thinkingautism


    JER doesn’t think scientists intentionally discriminate against #autistic people, but also don’t compensate them sufficiently. #IMFAR2016

    Sat, May 14 2016 12:20:13

  43. thinkingautism


    The US Affordable Care Act funds some partnership-based #autism research (e.g., PCORI) as a mandate. (So vote carefully in Nov.) #IMFAR2016

    Sat, May 14 2016 12:22:33

  44. CRAE_IOE


    “Stop getting stuck on semantics”, create a “spirit of #collaboration and #engagement” between researchers & #autistic people #IMFAR2016

    Sat, May 14 2016 12:34:21

  45. thinkingautism


    Re: Not getting stuck on #autism semantics unless it matters: On “language dickery,” via @rsocialskills:  #IMFAR2016

    Sat, May 14 2016 12:37:00

  46. thinkingautism


    #Autistic research participants: expect accessibility, inclusion, and respect from researchers—but not perfection! (& vice versa) #IMFAR2016

    Sat, May 14 2016 12:34:26

  47. thinkingautism


    #IMFAR needs to better accommodate/encourage #autistic participation — can have electronic poster sessions, for instance. #IMFAR2016

    Sat, May 14 2016 12:41:11

  48. SueReviews

    Sue Fletcher-Watson@SueReviews

    Strongly recommend checking out this site w editable outputs on proactive autistic engagement ideas 

    Sat, May 14 2016 12:37:13

  49. CRAE_IOE


    @SueReviews @ResearchAutism Research Seminar Series in UK ‘Shaping Autism Research’ promoting #engagement  #IMFAR2016

    Sat, May 14 2016 12:43:13