AutINSAR Twitter Chat 2019: What Autistic People Need From Autism Research

What do autistic people need from autism research? What is current autism research doing right? How does research let autistic people and their families down, and why? 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 fantastic conversations at IMFAR 2017 in San Francisco, and again at INSAR 2018 in Rotterdam, and are hoping for another fruitful discussion this year during INSAR 2019 in Montreal, Canada.

AutINSAR will once again be a partnership between us and The Autistic Self Advocacy Network (ASAN), NOS Magazine, Autism Women and Nonbinary Network (AWN Network), AutChat, and We Are Like Your Child. We welcome new 2019 partners Flow Observatorium and Autistics 4 Autistics Ontario.

#AutINSAR Partner Orgs: ASAN, AWN Network, NOS Magazine, TPGA, 

autchat, Flow Observatorium, and Autistic 4 Autistics Ontario
(Not pictured: We Are Like Your Child)

[image: The Twitter logos for seven organizations:
The Autistic Self Advocacy Network: a spiraling rainbow heptagon on a white background; 

Autism Women and Nonbinary Network logo: White circle on a gray background containing a pink lowercase "a" alit by an illustrated light blue butterfly, above black lowercase text reading "awn network," above two blue banners with lowercase black text reading "autism women & binary network" and "awnnetwork.org"; 

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; 

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; 

The AutChat logo of a lowercase black letters a and c, divided by a black staff with curved serifs on top and bottom and strike through, on a white background; 

Flow Observatorium logo of two boxes, the first white with black outline, black letters "Fl" followed by superscript number 33, the second a black box with white letters :"Ob" followed by superscript number 79;

and the Autistic 4 Autistics logo of a white background with a red block font letter "A" next to a red number 4, followed by a second red block font letter "A".] 

Autism research tends to focus more on causation, normalization therapies, and cures than on helping existing autistic community members. From both practical and human 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: costs, conference environment that are overwhelming from both sensory and social angles, confronting ableist people in the real world, the stress of traveling, 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

• Thursday, May 2, 2019
• 12:30-1:30 PM Eastern Time (9:30 AM PT / 5:30 PM GMT)
• INSAR conference Press Room
• Room 523B at Palais des congress de Montreal
  1001 Place Jean-Paul-Riopelle
  Montréal QC H2Z 1X7 Canada

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 solvely via Twitter is 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 (you may notice other …participants as popular Twitter chats get 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 the past two years' AutIMFAR/AutINSAR discussions:
• 2017: http://www.thinkingautismguide.com/2017/05/autimfar-chat-at-imfar-2017-towards.html
• 2018: http://www.thinkingautismguide.com/2018/05/autinsar-2018-what-do-autistic-people.html
• And also aware of the research being presented this year at INSAR 2019: https://insar.confex.com/insar/2019/webprogram/start.html
• Participants can also follow the Twitters stream of the INSAR conference itself, at twitter.com/hashtag/INSAR2019
• And apologies to those outside these time zones or who are not able to participate for other reasons; we will publish a transcript of the #AutINSAR chat here on our site as soon as we can, with notices going out via @ThinkingAutism on Twitter, or the Thinking Person's Guide to Autism Facebook page.