Friday, May 12, 2017

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

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

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

Today's panel was a follow-up to last year's SIG: https://storify.com/shannonrosa/bridging-the-research-gap-incoporating-autistic-in
  1. The (fabulous) #IMFAR2017 Incorporating #Autistic Intellect in Research SIG speakers: Steven Kapp, @johnrobison, Dena Gassner, @Tumbalaika. https://t.co/ahi1RZXpR1
    The (fabulous) #IMFAR2017 Incorporating #Autistic Intellect in Research SIG speakers: Steven Kapp, @johnrobison, Dena Gassner, @Tumbalaika. pic.twitter.com/ahi1RZXpR1
  2. [image description for photo above: Three white men and one white woman posing for a photo in a hotel conference room.]
  3. We are about to start our SIG session on involving autistic people in shaping research. Second year for this #IMFAR2017 session
  4. Now: At the IMFAR panel on integrating #autistic intellect in #autism research: Part 2. #IMFAR2017
  5. #Autistic people need to participate in #autism research in roles other than “subject.” #IMFAR2017
  6. We need #autistic people to tell researchers what is working and what is not working, & vice versa #IMFAR2017
  7. Stephen Shore @Tumbalaika talking about need to research what is preventing #autistic ppl from getting proper medical care. #IMFAR2017
  8. …because #autsitic ppl are NOT getting proper medical care, as evidenced by shortened life span, elevated suicidality, etc. #IMFAR2017
  9. @johnrobison talking about teaching neurodiversity at William & Mary, meaning creating welcoming campus for #autistic ppl. #IMFAR2017
  10. Having the students at William & Mary value neurodiversity (& intersectionality) means more woke public servants (W&M specialty). #IMFAR2017
  11. @johnrobison: Asks anyone who is teaching at a university to emphasize the value of #autistic people, as humans & in society. #IMFAR2017
  12. @johnrobison: #Autistic people are also good at connecting researchers with each other/catalyzing, because not competitors. #IMFAR2017
  13. Robison: autistic ppl in research have unique position to facilitate networking between scientists #IMFAR2017
  14. @johnrobison: Encourages #autistic people & allies to connect researchers w/each other, because researchers can’t always do that. #IMFAR2017
  15. Morning #IMFAR2017 SIG on including autism intellect in research process: @johnrobison stresses ability to make connections b/n researchers.
  16. Steven Kapp on his article Whose Expertise Is It? Evidence for Autistic Adults as Critical Autism Experts  http://journal.frontiersin.org/article/10.3389/fpsyg.2017.00438/full  #IMFAR2017
  17. Kapp methods for collecting article feedback: Recruitment through blogs, listservs, forums, social media, #autistic & non- folk. #IMFAR2017
  18. Kapp: Survey revealed persistent #autism myths, such as "most #autstic people are ‘retarded.'” >:( #IMFAR2017
  19. Kapp: This was the first study to directly study, measure, & analyze #autsitic ppls knowledge of #autism. (& compare w/NT info) #IMFAR2017
  20. Kapp: Neurodiversity-aligned perspectives on autism more likely to define as hereditary, & define by capacity, not medical model. #IMFAR2017
  21. Kapp: #Autistic people tended to have lower #autism stigma than non-autistic people (and so did their relatives) #IMFAR2017
  22. Kapp compared autistic and non-autistic people's knowledge about autism and their alignment with neurodiversity movement #IMFAR2017
  23. Autistic people had lower stigma than non-autistic people and were less likely to support cure agenda #IMFAR2017
  24. Kapp: Stigma about #autism was associated with lower autism knowledge. But internalized stigma for #autistics still issue. #IMFAR2017
  25. S Kapp study: "Stigma was associated with greater interest in autism normalization and cure but lower knowledge of autism." #IMFAR2017
  26. Gassner: Real-world repercussions of #autism stigma: Children are being taken away from #autistic mothers in the UK. #IMFAR2017
  27. But importantly stigma was no different when attitudes to normalisation agenda controlled for #IMFAR2017
  28. Becker: Lots of #autistic moms of autistic kids are closeted, because if they come out in parenting groups, they get turned on. #IMFAR2017
  29. @retrowife63 In many cases, sure. But some #autistic parents remain absolutely & intentionally closeted in public, out of fear. #IMFAR2017
  30. @johnrobison being EMPHATIC re: the need to pay #autistic research participants for all their time, not just their on-site time. #IMFAR2017
  31. Didn't realise the SIGs this morning involved group discussion. Hope this wasn't also a shock for actually autistic delegates #IMFAR2017
  32. Discussion at our table #IMFAR2017: how do we find people w/autism in our areas to help design research studies? #AutIMFAR
  33. Similar issue raised during #AutiMFAR: researchers with autism may not wish to self-identify for many reasons; must respect that. #IMFAR2017
  34. Non-#autistic prof who taught neurodiversity uni class, talking re ethical issues involved, +signal boosting of #autistic voices. #IMFAR2017
  35. Teachers/professors who support neurodiversity are in unique position to bust myths students arrive with. #IMFAR2017
  36. Also @SueReviews and @Kabieuk are an academic and autistic person who mentor each other - great example of participation #IMFAR2017
  37. Another great eg is the PARC group @milton_damian setup to get autistic people, academics and autistic academics working together #IMFAR2017
  38. Participated in the SIG on including autistic people in research! Very encouraging! #IMFAR2017