#AutIMFAR chat at IMFAR 2017

Even though IMFAR is all about autism, researchers don't always connect with #autistic concerns. Hence the #AutIMFAR Twitter Chat at IMFAR 2017, which was a conversation among autistic community members and autism research community members (with plenty of participants who were both).

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  1. [image above: hotel conference room gathering of autistic & non-autistic researchers & community members, of various genders & races, mostly white & female, which is fairly representative for IMFAR.]
  2. #AutIMFAR chat was a partnership with #autchat, The Autistic Self Advocacy Network, Autism Women's Network, NOS Magazine, and Thinking Person's Guide to Autism. We provided pre-chat guidelines & details.


    During the chat, we asked 10 questions, and the participants responded (at length!). We've highlighted the questions themselves, and organized the responses below each question heading to make the discussion easier to follow.

  3. [image above: The Twitter logos for five organizations: autchat: a rainbow background with a black infinity symbol and black text reading: "#autchat"; The Autistic Self Advocacy Network: a spiraling rainbow heptagon on a white background; Autism Women's Network: a pink lowercase "a" overlaid on a light-blue-and-brown illustrations of dragonflies and flowers, above the lowercase black text "autism women's network"; NOS Magazine: a black circle on a white background, with an illustration of an incandescent light bulb drawn in white and surround by a sunburst in dashed rainbow colors; and Thinking Person's Guide to Autism: All-caps black text on a white background reading "Thinking Person's Guide to Autism," with "Person's" in white text on a black arrow.]
  4. Before the chat began, we asked people what they wanted to discuss at #AutIMFAR. Folks had a lot to say.

  5. Respondents on Twitter had a lot to say. Highlights:

    • Topics#actually autistic ppl find important often misread by NT researchers. Need to address approach 2 research first.
    • Explore possible relationship between long term effects of sensory overwhelm and PTSD
    • I need some support to figure out how to deal with aging parents. I am an executive function mess w/it, skilled only in avoidance :(
    • Especially if your parents are autistic, too -- not 2x or 3x the issues, rather issues-squared or-cubed. Exciting! ;)
    • My understanding of whatr esearch there is indicates that people tend to adapt/adapt their surroundings to being autistic with age BUT
    • Can we have social research on improving lives of #autistic people, not the usual clinical blather on causation & ways 2 change us 2 fit in?
    • Autistic people should be deciding what the research priorities are. I believe we mostly wouldn't choose looking for genes and causes.
    • I think research on mental health support is a also a big unaddressed need. Lack of support services with specialization in autism.
    • I agree about including perspectives of #ActuallyAutistic researchers. Important to determine what will have most long term benefit.
    • What contexts and experiences make the difference between coping and not coping for people with ASD in workplace?
    • Many researchers are autistic! Need more support for autistic ppl to be researchers.
    • Participants' time & contribution must be compensated.
    • Poverty
    • I'd like to see more research into our strengths, not just our deficits. Like advanced musical skill?
    • More research on how autism affects appropriate medication doses, prescriptions please!!
    • Including effects of complex interpersonal trauma. Extremely important, common, understudied.
    • Looking for resources on autistic inertia, burnout, regression particularly with reference to late diagnosis.
  6. The chat itself was a wonderful and catalyzing experience, with autistic people and researchers (and those who are both) being incredibly frank, passionate, collaborative, and informative. The transcript below is lot of Tweets to parse, but trust us -- if you're interested in what kinds of autism research will actually benefit autistic people, it's worth your time and eyeball strain.

  7. The participants were an excellent cross-section of autistic people and autism researchers (and some are both, of course).

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