IMFAR 2017: Incorporating Autistic Intellect in Autism Research Special Interest Group (2)

Shannon Rosa

Fri, May 12 2017 17:14:15

IMFAR 2017: Incorporating Autistic Intellect in Autism Research Special Interest Group (2)

Today’s panel was a follow-up to last year’s SIG:

  1. c_pficxuaaa_ntw-5612619

    The (fabulous) #IMFAR2017 Incorporating #Autistic Intellect in Research SIG speakers: Steven Kapp, @johnrobison, Dena Gassner, @Tumbalaika.



    Fri, May 12 2017 17:09:19

  2. [image description for photo above: Three white men and one white woman posing for a photo in a hotel conference room.]

  3. johnrobison

    John Elder Robison@johnrobison

    We are about to start our SIG session on involving autistic people in shaping research. Second year for this #IMFAR2017 session

    Fri, May 12 2017 14:06:40

  4. thinkingautism


    Now: At the IMFAR panel on integrating #autistic intellect in #autism research: Part 2. #IMFAR2017

    Fri, May 12 2017 14:18:43

  5. thinkingautism


    #Autistic people need to participate in #autism research in roles other than “subject.” #IMFAR2017

    Fri, May 12 2017 14:19:35

  6. thinkingautism


    We need #autistic people to tell researchers what is working and what is not working, & vice versa #IMFAR2017

    Fri, May 12 2017 14:22:41

  7. thinkingautism


    Stephen Shore @Tumbalaika talking about need to research what is preventing #autistic ppl from getting proper medical care. #IMFAR2017

    Fri, May 12 2017 14:25:07

  8. thinkingautism


    …because #autsitic ppl are NOT getting proper medical care, as evidenced by shortened life span, elevated suicidality, etc. #IMFAR2017

    Fri, May 12 2017 14:25:57

  9. thinkingautism


    @johnrobison talking about teaching neurodiversity at William & Mary, meaning creating welcoming campus for #autistic ppl. #IMFAR2017

    Fri, May 12 2017 14:26:53

  10. thinkingautism


    Having the students at William & Mary value neurodiversity (& intersectionality) means more woke public servants (W&M specialty). #IMFAR2017

    Fri, May 12 2017 14:28:09

  11. thinkingautism


    @johnrobison: Asks anyone who is teaching at a university to emphasize the value of #autistic people, as humans & in society. #IMFAR2017

    Fri, May 12 2017 14:31:10

  12. thinkingautism


    @johnrobison: #Autistic people are also good at connecting researchers with each other/catalyzing, because not competitors. #IMFAR2017

    Fri, May 12 2017 14:32:58

  13. autism_women


    Robison: autistic ppl in research have unique position to facilitate networking between scientists #IMFAR2017

    Fri, May 12 2017 14:33:54

  14. thinkingautism


    @johnrobison: Encourages #autistic people & allies to connect researchers w/each other, because researchers can’t always do that. #IMFAR2017

    Fri, May 12 2017 14:34:18

  15. girlscientist

    Chris Gunter@girlscientist

    Morning #IMFAR2017 SIG on including autism intellect in research process: @johnrobison stresses ability to make connections b/n researchers.

    Fri, May 12 2017 14:35:49

  16. thinkingautism


    Steven Kapp on his article Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts  #IMFAR2017

    Fri, May 12 2017 14:35:34

  17. LorcanKenny

    Lorcan Kenny@LorcanKenny

    Now Dr Steve Kapp is talking about this great open-access paper:  #IMFAR2017

    Fri, May 12 2017 14:36:10

  18. thinkingautism


    Kapp methods for collecting article feedback: Recruitment through blogs, listservs, forums, social media, #autistic & non- folk. #IMFAR2017

    Fri, May 12 2017 14:36:41

  19. thinkingautism


    Kapp: Survey revealed persistent #autism myths, such as “most #autstic people are ‘retarded.’” >:( #IMFAR2017

    Fri, May 12 2017 14:38:07

  20. thinkingautism


    Kapp: This was the first study to directly study, measure, & analyze #autsitic ppls knowledge of #autism. (& compare w/NT info) #IMFAR2017

    Fri, May 12 2017 14:39:03

  21. thinkingautism


    Kapp: Neurodiversity-aligned perspectives on autism more likely to define as hereditary, & define by capacity, not medical model. #IMFAR2017

    Fri, May 12 2017 14:40:15

  22. thinkingautism


    Kapp: #Autistic people tended to have lower #autism stigma than non-autistic people (and so did their relatives) #IMFAR2017

    Fri, May 12 2017 14:41:11

  23. LorcanKenny

    Lorcan Kenny@LorcanKenny

    Kapp compared autistic and non-autistic people’s knowledge about autism and their alignment with neurodiversity movement #IMFAR2017

    Fri, May 12 2017 14:41:30

  24. LorcanKenny

    Lorcan Kenny@LorcanKenny

    Autistic people had lower stigma than non-autistic people and were less likely to support cure agenda #IMFAR2017

    Fri, May 12 2017 14:43:56

  25. thinkingautism


    Kapp: Stigma about #autism was associated with lower autism knowledge. But internalized stigma for #autistics still issue. #IMFAR2017

    Fri, May 12 2017 14:44:02

  26. girlscientist

    Chris Gunter@girlscientist

    S Kapp study: “Stigma was associated with greater interest in autism normalization and cure but lower knowledge of autism.” #IMFAR2017

    Fri, May 12 2017 14:43:42

  27. thinkingautism


    Gassner: Real-world repercussions of #autism stigma: Children are being taken away from #autistic mothers in the UK. #IMFAR2017

    Fri, May 12 2017 14:45:06

  28. LorcanKenny

    Lorcan Kenny@LorcanKenny

    But importantly stigma was no different when attitudes to normalisation agenda controlled for #IMFAR2017

    Fri, May 12 2017 14:50:14

  29. thinkingautism


    Becker: Lots of #autistic moms of autistic kids are closeted, because if they come out in parenting groups, they get turned on. #IMFAR2017

    Fri, May 12 2017 14:50:16

  30. thinkingautism


    @retrowife63 In many cases, sure. But some #autistic parents remain absolutely & intentionally closeted in public, out of fear. #IMFAR2017

    Fri, May 12 2017 14:55:10

  31. thinkingautism


    @johnrobison being EMPHATIC re: the need to pay #autistic research participants for all their time, not just their on-site time. #IMFAR2017

    Fri, May 12 2017 15:06:26

  32. EleanorPalser

    Eleanor Palser@EleanorPalser

    Didn’t realise the SIGs this morning involved group discussion. Hope this wasn’t also a shock for actually autistic delegates #IMFAR2017

    Fri, May 12 2017 15:11:09

  33. girlscientist

    Chris Gunter@girlscientist

    Discussion at our table #IMFAR2017: how do we find people w/autism in our areas to help design research studies? #AutIMFAR

    Fri, May 12 2017 15:19:21

  34. girlscientist

    Chris Gunter@girlscientist

    Similar issue raised during #AutiMFAR: researchers with autism may not wish to self-identify for many reasons; must respect that. #IMFAR2017

    Fri, May 12 2017 15:21:15

  35. thinkingautism


    At #IMFAR2017 panel on Incorporating Autistic Intellect into Autism Research, which is a follow up to 2016 panel: 

    Fri, May 12 2017 15:21:37

  36. LorcanKenny

    Lorcan Kenny@LorcanKenny

    Everyone at the including autistic intellect SIG should check out the @autresearchuk project  #IMFAR2017

    Fri, May 12 2017 15:24:16

  37. thinkingautism


    Non-#autistic prof who taught neurodiversity uni class, talking re ethical issues involved, +signal boosting of #autistic voices. #IMFAR2017

    Fri, May 12 2017 15:25:22

  38. thinkingautism


    Teachers/professors who support neurodiversity are in unique position to bust myths students arrive with. #IMFAR2017

    Fri, May 12 2017 15:28:45

  39. LorcanKenny

    Lorcan Kenny@LorcanKenny

    Here is some insight into the @autresearchuk seminar series – so relevant for this morning’s SIG #IMFAR2017 

    Fri, May 12 2017 15:34:27

  40. LorcanKenny

    Lorcan Kenny@LorcanKenny

    Also @SueReviews and @Kabieuk are an academic and autistic person who mentor each other – great example of participation #IMFAR2017

    Fri, May 12 2017 15:36:23

  41. LorcanKenny

    Lorcan Kenny@LorcanKenny

    Another great eg is the PARC group @milton_damian setup to get autistic people, academics and autistic academics working together #IMFAR2017

    Fri, May 12 2017 15:37:42

  42. autism_women


    Participated in the SIG on including autistic people in research! Very encouraging! #IMFAR2017

    Fri, May 12 2017 15:45:18