Shannon Des Roches Rosa 

Senior Editor, TPGA

img_1913-1555058
Welcome to IMFAR 2017!

[image: three white autistic folks: Corina Becker,

Steven Kapp, & Carol Greenburg, posing by

the “Welcome to IMFAR 2017” sign.]

We have been reporting from IMFAR, the annual International Meeting for Autism Research, since 2011. This year we provided general live coverage via Twitter, with select roundups including the Press Conference, and highlights from sessions such as Autism and Aging, Understanding Barriers to Autism Diagnoses for Children from Racial/Ethnic Minority Groups in the U.S., Mental Health Crises in Autistic Youth, and Autism and Sexuality. We also co-hosted the #AutIMFAR chat with autistic and autism research community members.

While the research presented at IMFAR continues to be varied in scope, and is still too disproportionately skewed towards prenatal, infant, and early childhood findings, our takeaway is that the 2017 meeting in San Francisco had the biggest increase in neurodiversity-oriented content and attendees we’ve seen so far. This is a welcome shift.

There were no fewer than five autistic media members at the press conference, including first-time IMFAR attendees John Marble for NOS Magazine, and Elizabeth Bartmess of #autchat, along with IMFAR veterans Carol Greenburg of TPGA, Corina Becker of Autism Women’s Network, and Dena Gassner. In addition to this increase in (openly) autistic participants, several events were dedicated to autistic feedback on the direction of autism research. And I can’t imagine acceptance-based research being included in IMFAR’s early years, yet in 2017, there it was:

Even though IMFAR 2017 saw improvement in the direction(s) of autism research, there was also much of the same old same old, according to University of Edinburgh researcher Sue Fletcher-Watson. And the needed epiphanies and attitude shifts resulting from focusing more on autistic needs often meant discussing unpleasant under-scrutinized realities, as Emily Willingham reported, in Half Of Autistic Adults Feel A Low Sense Of Well Being. But overall, a positive shift in including and respecting autistic people themselves was palpable:

“The focus at IMFAR on an autistic perspective and autistic adults represents a change in attitudes and emphasis at this enormous international conference over the years. Five years ago, the phrasing in most of these talks was “people with autism” and “subjects” with a distinct tone of condescension, and the populations in the studies were mostly boys. This year, people are “autistic people,” the tone is one of much greater respect and care, autistic people were visible and participating, and researchers seem to have realized that not all autistic people are little boys.”

The more people talked about unmet autistic needs, the more under-examined topics emerged. Sue Fletcher-Watson (in person) and John Elder Robison (online) emphasized the need for researchers to pay attention to autism subjects autistic people and their allies consider common knowledge, then reinforce that knowledge with studies and data to both legitimize areas of need, and make them actionable. Precedents discussed during the conference include Liz Pellicano and Felicity Sedgwick’s findings on autistic women’s friendships, Noah Sasson and crew’s observations on non-autistic people’s harshly judgmental attitudes towards autistic people, and Lynsey Calder and team’s confirmation that autistic children don’t always share non-autistic social motivations. Autistica UK, a UK autism research charity that aims to be “the bridge between people with autism and researchers, ensuring that research responds to the needs of individuals with autism and their families,” has even provided a list of Top 10 Questions for Autism Research.

Researchers who addressed autistic needs at IMFAR itself include Sarah Cassidy, of Coventry University, who followed up on last year’s groundbreaking autism and suicidality SIG with a SIG dedicated to asking the right questions and developing autism-appropriate support methods. Laura Crane and the team from University College London’s Centre for Research in Autism and Education (CRAE) talked about helping autistic people, specifically minors, navigate Family Court systems (a TPGA interview with Dr. Crane is forthcoming). And the researchers in the panels on Mental Health Crises in Autistic Youth and Autism and Sexuality were mostly on point, according to autistic audience members.

But part of the problem, as CRAE’s Liz Pellicano reported in 2014, remains that:

“Research into effective ways of responding to the immediate needs of autistic people is, however, less advanced, as are efforts at translating basic science research into service provision. Involving community members in research is one potential way of reducing this gap.”

Which is exactly what was discussed during Dena Gassner’s Special Interest Group on Incorporating Autistic Intellect (a follow-up to her IMFAR 2016 panel), for example:

autistic2bintellect2bsig2b2017-8595464
IMFAR 2017 Autistic Intellect SIG panelists:
Steven Kapp, John Robison, Dena Gassner, Stephen Shore

[image: four white autistic people posing in a hotel conference room.]

Another IMFAR 2017 event channeling autistic priorities and knowledge was AutIMFAR, a Twitter chat with both onsite and online participants from the autistic and/or autism research communities, co-hosted by #autchat, The Autistic Self Advocacy Network, Autism Women’s Network, NOS Magazine, and Thinking Person’s Guide to Autism. During the chat, we asked participants these 10 questions:

  1. What top three priorities would you pick for autism research, if you could? 
  2. What are some really obvious-to-autistic people under-researched autism areas? 
  3. What are some disconnects you’ve observed between research findings and #actuallyautistic experiences?
  4. What kinds of feedback from autistic people are most useful to researchers? 
  5. How can autistic communities support researchers whose work we value? Can we provide leverage in getting funding?
  6. How can autistic & autism research communities better support autistic autism researchers and increase their numbers?
  7. What shifts have you seen in inclusion of autistic community feedback on research over time? How can this improve?
  8. For people with experience interfacing with both communities: What has surprised you about each?
  9. What disconnects do you see between autism research and clinical practice? 
  10. Any topics we’ve missed that you’d like to discuss? 

The #AutIMFAR chat’s full responses were valuable, varied, and voluminous (and very much worth your time). Some highlights:

And a few responses that need to be plastered on the wall of every autism research area, such as:

img_1905-7229661
The #AutIMFAR Onsite Crew

[image: hotel conference room gathering of autistic & non-autistic researchers

& community members, of various genders & races, mostly white & female,

which is fairly representative for IMFAR.]

Even the traditional stakeholder’s lunch pivoted on autistic input. Emcee John Elder Robison put representatives from Autism Speaks, SPARK, and the Autism Science Foundation on the spot, by asking them to tell the audience how they incorporate autistic people and priorities into their efforts, and why he thinks this is important:

The autism research organizations’ representatives’ responses to Robison’s challenge ranged from enthusiastic and exemplary, to surprised and tentative, but the message is clear: Autistic people are holding autism research organizations accountable, and need to be included in autism research efforts. It is no longer acceptable for autism research conference participants to talk about autistic people as “them”; these discussions need to be about “us.”

img_1919-9928984
IMFAR selfie: Shannon Rosa & Deb Karhson

[image: a white woman with red hair and duck lips,

and a smiling Sri Lankan/Nigerian-American woman

with glasses and long curly black hair]

I also spent time chatting with Stanford’s Dr. Deb Karhson, whom TPGA recently interviewed, and whose adult brother is a high-support autistic dude like my own son. When weren’t politely but firmly dual-info-firehosing a journalist who unwittingly dropped the oh-no-he-didn’t of an “autism is like cancer because” comparison on us during Deb’s poster on blood-based biomarkers, we were musing about how people with ability profiles like the beloved autistic men in our lives were still mostly sidelined, disrespected, pitied, or objectified during IMFAR 2017:

Hopefully future IMFARs (which will be rebranded as INSARs, starting in 2018) will make progress in addressing and respecting the needs of autistic people of all abilities as well. Deb and I and many others will certainly be monitoring the situation.

—-

P.S. It’s not a contest, but, we did win #IMFAR2017—purely in terms of our Twitter coverage. Spectrum’s team won for articles published during and about the conference.

screen2bshot2b2017-05-132bat2b1-16-472bpm-2512550
TPGA earns its media press pass, once again

[image: Twitter analysis of the top influences of #IMFAR2017:

two columns: top ten by mentions, & top 10 by tweets;

TPGA as @thinkingautism holds the top position in both columns]

Published by Shannon Des Roches Rosa