Monday, May 7, 2018

#AutINSAR Twitter Chat 2018: What Autistic People Want From Autism Research

What do autistic people want from autism research? And how can we convey these concerns to autism researchers? That is what #AutINSAR is all about: a conversation between autism researchers and autistic community members, both in person and on Twitter.  We had a fantastic conversation last year at IMFAR 2017 in San Francisco, and are hoping for another fruitful discussion this year at INSAR 2018 in Rotterdam.

We are once again partnering with 
The Autistic Self Advocacy Network (ASAN)NOS MagazineAutism Women and Nonbinary Network (AWN), and autchat. We are also welcoming new partner We Are Like Your Child.

image: 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.
#AutIMFAR Partner Orgs: autchat, ASAN, AWN, NOS Magazine, and TPGA
(Not pictured: We Are Like Your Child)

[image: 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; Current Autism Women and Nonbinary Network logo: 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.]
Autism research tends to focus more on causation and cures than on helping existing autistic community members. From both practical and basic rights perspectives, this needs to change. Too many core matters affecting autistic people's health and quality of life are still under-researched, and, as a result, proper supports and understanding are too often lacking. The #AutINSAR discussion hopes to help autism research better serve the interests of autistic people, and more fully address the research matters autistic people want addressed. 

With this in mind, #AutINSAR is meant to connect autistic communities with autism research communities directly, during INSAR, the International Meeting for Autism Research. Such conversations don't happen often enough at INSAR due to a variety of barriers: cost, sensory bomb conference environment, having to face people who don’t see why they shouldn’t aim to cure or normalize autistic people, travel stress, etc.
 

If you are an autistic person who is interested in autism research and/or an autism researcher, we hope you will participate in this year's #AutINSAR.

#AutINSAR Details
  • Friday, May 11
  • 5:30 - 6:30pm GMT+2 (Rotterdam, INSAR conference Press Room)
  • 11:30 - 12:30 ET
  • 8:30 - 9:30am PT
How to Participate
  • If you're at the conference and want to join the in-person discussion, come to the INSAR Press Room. Otherwise, participating via Twitter only is just fine.
  • Follow the Twitter hashtag #AutINSAR. Alternatively, Twitter chat platforms like TweetChat and Twubs can simplify following hashtag-based conversations. 
  • Questions will be asked as "Q1" etc; please answer using "A1" etc.
  • The chat is intended to be between any autistic individual (including self-diagnosed) and/or autism researcher who wishes to participate, as much as anything on Twitter can be controlled (popular Twitter chats are sometimes targeted by Twitter Bots of Dubious Nature). 
  • If you are a friend, parent, non-researcher autism professional, ally, or other party interested in autism research, we encourage you to RT as much of the chat as you’d like (thank you!). 
  • We ask that participants abide by TPGA’s community guidelines, the short version of which is: It is OK to disagree, but not OK to insult those with whom you disagree: www.thinkingautismguide.com/p/community-guide.html.
  • Ideally, chat participants should be familiar with last year's AutIMFAR discussion: http://www.thinkingautismguide.com/2017/05/autimfar-chat-at-imfar-2017-towards.html
  • And also aware of the research being presented this year at INSAR 2018: https://insar.confex.com/insar/2018/webprogram/start.html  
  • Participants can also follow the Twitters stream of the INSAR conference itself, at twitter.com/hashtag/INSAR2018.
  • And apologies to those outside our time zone or who are not able to participate for other reasons; we will publish a transcript of the #AutINSAR chat.