Sunday, May 22, 2016

The State of Autism Research: TPGA Takeaways From IMFAR 2016

Shannon Des Roches Rosa with Carol Greenburg

Your faithful TPGA editors spent most of last week in Baltimore, Maryland at IMFAR, the International Meeting for Autism Research. We gleaned as much as we could from the 2000 scientists, professionals, autistic people, and family members from all over the world who spent three full days talking about the most current findings and trends in autism research. But we didn't cover everything or meet everyone we wanted to, because doing so is not physically possibly without a Time Turner. (If you ever want to experience abject FOMO -- fear of missing out -- by all means, go to IMFAR.)

Overview


Ninety-nine percent of the researchers at IMFAR are the nicest, most well-meaning scientists one could ever meet, which makes for a friendly atmosphere. We were happy to see significant progress on some research fronts: only a single presentation about vaccines, and it was not about causality at all -- but was instead a poster on how lingering hoax-based vaccine-autism fears affect the immunization status of autistic kids' younger siblings. More researchers used social media to speak out publicly about implausible science -- often live, while the implausible presentations were happening. More sessions focused on autistic quality of life, and more sessions were led by or featured autistic speakers.

We were grateful to see sessions on how autistic people can contribute to research, girls and gender, what adult autistic people need and aren't getting, a "reality check" about autism research and outreach in impoverished communities, sensory sensititivities, suicidality, understanding racial and cultural differences, anxiety, communication, adult services, and how little we know about autism and ageing. All good things, all good things.

What remained not-good is how IMFAR 2016 represented skewed priorities and proportions in autism research. While we are all for scientific curiosity, we observed too much emphasis on causation, too many animal models, too much focus on normalizing autistic people instead of understanding their needs -- compared to investigations into improving the lives of existing autistic people. That balance needs to shift.

Autistic people were still mostly talked about with ableist language and medical model speak, which is a problem -- and indicative, to us, of how much autistic people continue to be sidelined: talked about, instead of included, in autism discussions. I'd like researchers to consider the effects of spending one's life under "the clinical gaze," as NeuroTribes author Steve Silberman puts it, and how such implicit negativity about autism factors into closeted and undiagnosed autistic autism researchers remaining hidden.



Press Conference


An example of lopsided autism research priorities was, unfortunately, the IMFAR 2016 press conference. Such bias is not merely concerning but distressing, given that the press conference presentations are often the only coverage IMFAR gets from the mainstream media.  

Alison Singer, Geri Dawson, & IMFAR Press Conference presenters
[image: Red-headed white woman speaking at a podium, next to
seven white people seated at a long table with microphones.]
The first press conference presenter was Dr. Dani Fallin, who "suggests excess levels of folate (folic acid) supplements in some pregnant women increases the risk of ASD twofold. We were openly unimpressed, given that it's already understood (as well as covered in Emily Willingham's and Tara Haelle's new book The Informed Parent) that both under- and over-dosing on folic acid is problematic for fetal neural development. The Atlantic's reaction was more blunt, staying "Concerns About Folate Causing Autism Are Premature." Yet the study was taken at face value by, and covered at length on, major media outlets -- including local Baltimore radio.

Next was Dr. Jason Wolff's and Dr. Jed Elison's "Restricted Behavior and Brain Functional Connectivity in Infants and Toddlers at Risk for Developing Autism Spectrum Disorder." While yes, it would be cool to have a tool (fMRI in this case) to diagnose autistic kids during toddlerhood so they can start being supported right away, it was amusing to see the researchers recognize that a "greater proportion of 18 month old boys in general show more intense interests."

What I found most interesting about this study was an aspect that was not emphasized during the press conference, regarding its cohort: "Children were classified as high risk (HR) if they had a sibling with ASD, or low risk (LR) if they had at least one sibling without ASD and no 1st or 2nddegree relatives with ASD." Implicit recognition that autism is both genetic and heritable FTW.

Then Dr. Renee Gardner presented findings on how maternal inflammation during pregnancy increases likelihood of a baby being autistic. This is also largely unsurprising -- we know autism is inborn, we know there are a huge constellation of genes involved, we know from twin studies that it's prenatal factors may increase the likelihood of those constellations coming together and resulting in autism, and we know that maternal illness or infection can affect fetal neurology and development.

Next, IMFAR mainstay Dr. David Mandell talked about US autism insurance mandates, specifically that,
"In the US, 42 states have passed autism insurance mandates that require commercial insurance plans to pay for autism-related services. These mandates have not been rigorously evaluated. The few studies of the mandates have not assessed their effects directly on the number of children diagnosed with autism or the services they received as a result of the mandates."  
We are all for evaluating policy for effectiveness, especially with regards to outcomes, and so don't have specific concerns about Mandell's study itself. We do worry that "autism-related services" usually means Applied Behavioral Analysis (ABA) or similar behaviorally-based, normalization-geared therapies, the complicated problematics of which are generally ignored by autism research.

The final press conference presenter was Dr. Jim Bodfish, who sort-of debunked the common (and insulting) assumption that autistic people who engage in self-injurious behavior are insensitive to pain:
"Our work suggests that at least a subgroup of individuals with chronic repetitive SIB may be in a physiological state similar to neuropathic pain / hyperalgesia associated with alterations in inflammatory, immune, and nociceptive systems. If so, this may provide a set of accessible, objective biomarkers of altered sensory function that may help identify the need for treatment and perhaps also mark the course of treatment response in this vulnerable but under-researched subgroup."
Knowing how to identify and harness biomarkers is not a bad thing (though, as Sue Fletcher-Watson notes, the term "biomarker" is not always correctly harnessed by autism researchers). But, again, the research team could also have tapped into one of the frequent autistic-inclusive discussions on fluctuating and atypical responses to pain, especially as this is an autistic commonality affecting people of all abilities.


Even though Bodfish acknowledged that insufficient communication options may contribute to the difficulty of properly evaluating autistic pain, he did not cover how being unable to effectively communicate can lead to frustration and thus to increased self-injury, or that maybe it could decrease self-injury if the subjects had a working communication system.

Opening Reception


The press conference was followed by the IMFAR 2016 opening night reception, which was wonderful in terms of randomly connecting with wonderful people, but which was also held in the loudest ballroom ever. We kept stepping outside and talking with people in the hallways instead (and noticed many autistic attendees doing the same).

It was perplexing, this holding an autism event in such a sensory-hostile (and so autistic-hostile) environment. IMFAR organizers should consider putting more effort into accessibility: not only regarding sensory-friendly environments, but also what Katie Rose Guest Pryal describes as mental health-friendly ones:
"With an accessibility approach, accommodations are integrated into a space — say, an annual conference — and not particularized to an individual. Most important, the burden shifts from the individual to society."
With an accessibility approach, accommodations are integrated into a space — say, an annual conference — and not particularized to an individual. Most important, the burden shifts from the individual to society. - See more at: https://chroniclevitae.com/news/1377-conference-challenges-for-people-with-psychiatric-disabilities?cid=VTEVPMSED1#sthash.fnlaYZff.dpuf
With an accessibility approach, accommodations are integrated into a space — say, an annual conference — and not particularized to an individual. Most important, the burden shifts from the individual to society. - See more at: https://chroniclevitae.com/news/1377-conference-challenges-for-people-with-psychiatric-disabilities?cid=VTEVPMSED1#sthash.fnlaYZff.dpuf
With an accessibility approach, accommodations are integrated into a space — say, an annual conference — and not particularized to an individual. Most important, the burden shifts from the individual to society. - See more at: https://chroniclevitae.com/news/1377-conference-challenges-for-people-with-psychiatric-disabilities?cid=VTEVPMSED1#sthash.fnlaYZff.dpuf`


Conference: Day One


The tone set for the first official day of IMFAR 2016 was, frankly, dodgy. Environmental causation researcher Dr. Irva Hertz-Picciotto's opening keynote felt like it was beamed in from the relative autism research Bronze Age of 2006, not taking place in 2016 -- she even invoked insupportable data regarding a "California autism epidemic." The sketchiness of Hertz-Picciotto's assertions was not taken well by attendees like Dr. Chris Gunter and Dr. Sue Fletcher Watson:

Dr. Chris Gunter:
"I would similarly urge caution to those attending and covering the meeting in reporting the environmental associations being presented. For example, several speakers focused on pesticides, but the best available data suggest the strength of any true association specifically between pesticides and autism is less than for inter-pregnancy intervals and much less than for age of parents."
So thank heavens for the Spectrum-hosted top-notch State of Autism Science discussion IMFARChat, which took place both on Twitter and in the press room, and touched much more on areas of need in research: underserved populations, quality of life, increasing autistic participation in research, and on addressing concrete issues rather than the distractions of abstractions.

At #IMFARchat: TPGA editrixes Shannon Rosa and
Carol Greenburg, with Apoorva Mandvilli and Chris Gunter

[image: Posed photo of two red-headed white women, a South Asian woman
with long black hair & bangs, & a white woman with short platinum hair.}


Conference: Day Two


IMFAR 2016 day two was an improvement. We especially enjoyed the panel on research, under diagnosis, testing bias, and self-advocacy in autistic females (or really, in those who don't identify as male), featuring The Autistic Self Advocacy Network's Deputy Executive Director Julia Bascom. And which opened with quotes from TPGA's own How Can We All Do Better By Our Autistic Girls? article, which was cool. For details and reactions, see our our Session Storification.
Julia Bascom, Steven Kapp, Shannon Rosa
[image: selfie of three goofy white people.]

We also enjoyed getting to spend most of the day hanging out with that same Julia, and getting her insights on many autism matters.

The Stakeholder lunch was ... interesting. We were unimpressed by In A Different Key authors John Donvan and Caren Zucker, who spoke, and who framed autism with shock and pity and dignity-robbing videos of autistic people having meltdowns, who think that the best way to fight for autistic people is to be their patronizing buddy-champions, who continue to ignore autistic primacy in autism matters, and who, sadly, seem genuinely puzzled as to why their efforts meet open hostility. (Hint: it's similar to why feminists resent the patriarchy.)

Then the "many conflicts" theme continued. We missed Dr. Lisa Croen's session on autistic adults and health care utilization, damn it, but hope to follow up with her. We also missed Dr. Sarah Cassidy's Special Interest Group on autism and suicidality, but were lucky enough to catch her and interview her alongside Julia Bascom and UCLA researcher Steven Kapp.

Conference: Day Three


The third and final conference day was stellar. We made it to a 7:15 AM Special Interest Group (SIG) on Incorporating Autistic Intellect in Research Design and Evaluation, in which Dena Gassner, Dr. Stephen Shore, Alexa Pohl, and John Elder Robison discussed the importance of including autistic people in all areas of the autism research process. (See our Storified panel summary for coverage.) The session was well-attended, and so lively that no one wanted it to end. Hopefully the discussion will continue anew, and soon.

Alexa Pohl, Dena Gassner, John Elder Robison, and Stephen Shore
[image: a white woman with red hair speaking at a podium, next to three
other white people. A couple with matching white cowboy hats and
outfits, seen from behind, is in the foreground.]
Of note is that Alexa Pohl's autistic collaborator Monique Blakemore, who was the Autistic Intellect SIG's inspiration, was not able to attend IMFAR  due to funding hurdles. Conference organizers need to start addressing (perhaps with a ... study?) the multifactorial barriers for autistic IMFAR attendees.
Next was Dr. Paul Shattuck's excellent keynote on the need to “move the needle” on adult outcomes, specifically determining the kinds of research and tracking tools that might influence widescale changes in those outcomes.

Dr. Shattuck then chaired a panel on autistic life courses and "ecological perspectives," including Collaborative Networks Among Parents and Autism Intervention ProvidersAdults with Autism Spectrum Disorders Post High School, Training Parents to More Effectively Navigate the Adult Service System, and TPGA contributor and autistic researcher Steven Kapp's incredible Toward Social Acceptance of Autism: Listening to Autistic People.

In Conclusion


We appreciate IMFAR, even though it usually takes us a week or more to recover from IMFAR. Overall, we are optimistic about the increased attention to autistic quality of life, underserved populations, and lifespan issues, though we'd like to see more emphasis on functional communication, co-occurring conditions, and autistic inclusion, and, and, and. For a list of autism-related topics autistic people themselves discuss and want addressed, please (please) look through the #AutChat archives.

Please also note that as laypeople trying to make sense of autism research, we relied heavily on the live observations of autism science professionals like Spectrum News's science writing team, Chris Gunter, Sue Fletcher-Watson, Steven Kapp, and Lorcan Kenny.

See you in San Francisco next year!

Coda


We were quite the IMFAR 2016 social media influencers, it seems. Imagine our numbers if we'd actually been able to attend all the sessions we wanted to attend.
[image: chart showing the top 10 IMFAR 2016 influencers on Twitter.
TPGA is #1 in mentions, and #2 for Tweets (which includes RTs).]

Monday, May 16, 2016

IMFAR 2016: Bridging the Research Gap: Incorporating Autistic Intellect in Research Design & Evaluation

IMFAR 2016: Bridging the Research Gap: Incorporating Autistic Intellect in Research Design & Evaluation

IMFAR 2016: Bridging the Research Gap: Incorporating Autistic Intellect in Research Design & Evaluation

Dena L. Gassner and Stephen Shore, Alexa Pohl and John Elder Robison discussed the importance of including autistic people in all areas of the autism research process. Unfortunately, session catalyst Monique Blakemore was unable to attend IMFAR due to funding hiccups.

  1. Special Interest Group (SIG) description: Recent IMFAR gatherings have emphasized the need to close the gap between the bench and the community in regard to autism outcomes. This SIG seeks to create dialogue about what autistic individuals can bring to the research bench as contributors to design, analysis and review of potential research. One case example; a study on autistic women wherein such collaboration enhanced the quality and outcomes will be shared. This paradigm shift from "for people with autism" to "with autistic collaboration" is key in order to target, prioritize and expedite proactive outcomes. We will also discuss making these situations meaningful for the person with autism, rather than tokenistic or demeaning in nature. Finally, we will discuss changes needed to insure an accessible and inclusive workplace for autistic researchers.
  2. At Bridging The Research/Application Gap: Incorporating Autistic Intellect in Research Design & Evaluation SIG. #IMFAR2016
  3. Great start to the day at a special interest group on working in partnership with autistic people and their families #IMFAR2016
  4. Need to fast track research by talking to #autistic people, who usually respond to #autism research results with “well, yeah.” #IMFAR2016
  5. "Well, yeah" example: Spectrum Magazine reported on IMFAR 2016 research indicating autistic people have "unusual sensory processing" even during basic tasks. The Thinking Person's Guide to Autism Facebook forum on the article contains 60+ comments, mostly confirmations, mostly from autistic people.
  6. In Australia & the UK, #autistic mothers are losing #autistic children to social services b/c lack of #autism understanding. #IMFAR2016
  7. Science needs to do better by #autistic people/adults now: research shows so many co-occuring health issues, higher suicide risk. #IMFAR2016
  8. We need much more (much more) facilitation of research between #autistic people and researchers: experience, recommendations. #IMFAR2016
  9. "There's no such thing as high-functioning [autism]. There's internalizing & externalizing. Hard for all of us"--Dena Gassner #IMFAR2016
  10. Best practices for #autistic collaboration: Don’t patronize autistic participants, don’t conflate co-occurring traits w/#autism #IMFAR2016
  11. There are some isolated examples of autistic involvement in research but mostly too little, too tokenistic #IMFAR2016
  12. Inclusive research design: Improves the validity of the design, avoids BS (ideally), better access to #autistic populations. #IMFAR2016
  13. Inclusive research improves validity of study, avoids unfeasible studies, helps recruit #actuallyautistic people. #IMFAR2016
  14. Inclusive research design: *actually* addresses needs of autistic community, streamlines path from research to implementation #IMFAR2016
  15. Researchers need to recognize that #autistic identity is not separate from personhood. #IMFAR2016
  16. Researchers: make sure your power dynamic is equalized. (Again, don’t patronize #autistic participants) #IMFAR2016
  17. Also crucial: research best practices should include reimbursing #autistic collaborators for their time and expertise. #IMFAR2016
  18. Don't take advantage of . Reimburse #actuallyautistic collaborators 4 their time & expertise. #IMFAR2016
  19. ... if Dad, who was a selective mute as a kid, has aphasia in part bc of his autism, would that affect his treatment? #IMFAR2016
  20. Researchers: your #autistic participants needs to be diverse. And you need to listen to their feedback about your study. #IMFAR2016
  21. Now, @johnrobison: He’s long been urging scientists to incorporate #autistic perspectives, but was himself recruited to #IMFAR. #IMFAR2016
  22. JER is first openly #autistic voting board member of INSAR, feels like we’re past #autistic tokenism. #IMFAR2016
  23. Appreciate speaker's point selection of collaborators is relevant. Ques re autistic elder r not useful 2 ask a young autistic #IMFAR2016
  24. Expense=barrier for #autistic participants in #IMFAR, INSAR leadership who don’t have institutional supports. Need more funding. #IMFAR2016
  25. JER: #Autism science folks *have* to respect and honor #autistic people, or their world will come “crashing down.” #IMFAR2016
  26. Researchers who study other marginalized communities know are absolutely beholden to them, yet somehow ignore #autistic voices. #IMFAR2016
  27. JER believes #autism research funding should be tied to #autistic faculty member participation as well as #autistic participants. #IMFAR2016
  28. But we have a real problem with #autistic academics being closeted JER thinks better funding could change that. #IMFAR2016
  29. .@johnrobison optimistic about increasing willingness for autistic researchers to come out of the closet #IMFAR2016
  30. JER: #Autism isn’t a younger people thing. Scientists his age are largely still stealth. He wants his tribe flushed out by $$. #IMFAR2016
  31. JER: Going forward: need recruitment and maximization of older #autistic role models. #IMFAR2016
  32. .@johnrobison is neurodiversity scholar in residence at William & Mary university but this option closed to most autistics #IMFAR2016
  33. JER is neurodiversity scholar in residence at William & Mary — without standard academic qualification. Why not other #autistics? #IMFAR2016
  34. Dr. Stephen Shore Autistic Academic, Adelphi Univ. decided to prioritize autistic excellence as area of specialized instruction #IMFAR2016
  35. How can we get past #autsitic tokenism in #autism research? Autistica in UK has autistic participants funding mandate, direction. #IMFAR2016
  36. JER doesn’t think scientists intentionally discriminate against #autistic people, but also don’t compensate them sufficiently. #IMFAR2016
  37. The US Affordable Care Act funds some partnership-based #autism research (e.g., PCORI) as a mandate. (So vote carefully in Nov.) #IMFAR2016
  38. "Stop getting stuck on semantics", create a "spirit of #collaboration and #engagement" between researchers & #autistic people #IMFAR2016
  39. #Autistic research participants: expect accessibility, inclusion, and respect from researchers—but not perfection! (& vice versa) #IMFAR2016
  40. #IMFAR needs to better accommodate/encourage #autistic participation — can have electronic poster sessions, for instance. #IMFAR2016
  41. Strongly recommend checking out this site w editable outputs on proactive autistic engagement ideas  http://www.shapingautismresearch.co.uk/  #IMFAR2016