Thursday, June 4, 2015

Whither Autism Research? Observations From IMFAR 2015

Shannon Des Roches Rosa
www.ThinkingAutismGuide.com
twitter.com/shannonrosa

TPGA has made a point of attending IMFAR, the annual International Meeting for Autism Research, since 2011. We believe it is important to go beyond learning about the current state of autism research by talking with and listening to researchers directly -- and not just about current research, but about how research can better benefit autistic people, in addition to those who love, live, and work with autistic people of all ages and abilities. 

Here is what we learned and observed at IMFAR 2015, which took place last month in Salt Lake City, Utah. Note that the IMFAR conference itself -- with scores of presentations and hundreds of posters -- is overwhelming, and we only got to see part of what was actually presented and discussed in the full conference. We also live-tweeted several sessions from the conference, and compiled that coverage at Storify.

This is a long and link-rich post. Do not feel the need to absorb it all in one read. 

Questions very welcome.

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Who Should Autism Science Be Serving?

IMFAR 2015 brought hundreds of contemporary autism researchers together to discuss their work with each other, various members of autism and autistic communities, the press, and the world. Whereas in the past the conference has been more purely research-focused, IMFAR has evolved to better serve and include the communities its researchers study (though more work is needed, with regards to medical model language, etc.).

INSAR president Francesca Happe's position set a welcome tone for the conference with her pre-IMFAR Op-Ed Autism Truths and Myths: The State of the Science:
"Autism is not just about children or males.

"Researchers now widely recognize that ASD is not a rare condition and that perhaps one percent of the population has autism. The popular conception of autism is of the child with the far-away gaze, and the vast majority of published research is on children with ASD. However, it's important to remember that most people with autism are adults.

"Concentration on early diagnosis and intervention for ASD has been important, but can leave the impression that later intervention is impossible or ineffective. In fact, little is known about ASD in older adults, and equivalently intensive interventions could also lead to major improvements in functioning and well-being late in life."
Hers was part of a cheering aspect of IMFAR 2015: a greater recognition of the autistic people who are here already, and the need for science and research to better serve them. Which is very much needed, as autistic writer Judy Endow notes:
"I love when science catches up to the autistic experience. It allows countless people to receive validation overnight. We go from “psychologically disturbed” and “behaviorally challenged” to “scientific” all because science has caught up with our everyday experience of the world around us."
The conference itself featured more autistic leadership than in the past, as well as more autistic buy-in, and more autistic people being consulted by scientists on matters that will help autistic people's quality of life today, not in the distant future. This is not to say we don't need long-term studies too; but we need to balance the proportionality of autism research, to skew more towards enabling the autistic people of all ages and abilities who are here already to live the best lives possible.

(The research community itself also has work to do regarding de-stigmatizing autism, as not all the autistic academics and researchers at the conference felt comfortable being "out" as autistic. That hesitance is for a good reason: many autistic professionals report that their competency is questioned, once they disclose an autism diagnosis. This needs to change.)

And, beyond research, the conference itself needs to consider how to better accommodate autistic attendees, because there are still far too many autistic people who want to attend but do not or cannot. In talking with autistic people who didn't attend but wanted to, the primary barriers are finances, processing, and sensory issues. With regards to finances, the costs of attending IMFAR (fees, lodgings, meals, travel) are not realistic for people who live on Disability assistance, as many autistic people do. And the difficulty of processing and responding to speech and visuals in real time can overwhelm many autistic people, as can sensory issues like lights, noise, and crowds. (And the fact that these issues aren't studied enough doesn't really help.)

Here's what could improve participation: making remote access to sessions available (many autistic people participated remotely via social media options like Twitter), providing noise-cancelling headphones, using color-coded communication preference badges, providing sound-proofed booths with audio piped in (such as translators use). We really do need more autistic people at IMFAR, and to do that we need to remove participation barriers.

We also need more autistic people directly involved with the IMFAR conference itself, participating in committees and planning. But, again, finances may be an issue, which means that the $100 INSAR membership fee is a barrier.

Still, it was gratifying to witness the efforts of autism researchers who argued for putting autistic people's needs first. In her post on IMFAR takeaways, Sue Fletcher-Watson from the The University of Edinburgh​ made a case against normalizing autistic people, and for instead work towards the goal of being "optimally autistic":
"Pushing every child on to the same, neurotypical pathway, ending up in the same neurotypical city, is boring at best, abusive at worst. Early intervention research needs to have a firm foundation in engagement with the autism community, and an appreciation of the skills and learning of the autistic child. If early autism researchers can keep this in mind, we might be able to create something truly valuable – a way to help autistic children become optimally autistic."
In the same post, Dr. Fletcher-Watson also noted that:
"Early intervention research needs to have a firm foundation in engagement with the autism community, and an appreciation of the skills and learning of the autistic child."
For those in search of specific best practices guidelines, SARG (the Scottish Autism Research Group) recently provided seven concepts to consider, for those who want to do good autism research:
Four can be considered hallmarks of good, stakeholder-endorsed research:
  • Connections. Between researchers, the community and practitioners, in both directions.
  • Researchers understanding what needs to be done ‘on the ground’. Practitioners and communities understanding constraints on
 research.
  • Impact: Translation of research evidence into practice recommendations. Policy based on the cost of doing something versus the higher cost of 
doing nothing.
  • Outcomes. High quality measurement of meaningful progress.
In addition, three challenges to effective, engaged research were also identified. These are:
  • Scale: research tends to deal in ‘average’ behaviour in a group, but practitioners and community members need individualised supports
  • Funding: the perceived priorities of major research funders seem rarely to correspond with community priorities
  • Time: this resource is always in short supply and prevents practitioners from drawing on research evidence, researchers from sharing their 
findings, and community members from either taking part in research, or sifting through the myriad options being offered by commercial operators.
And, as SFARI's Greg Boustead wrote,

"If there is an overriding takeaway from IMFAR 2015, it has to be that a dialogue in which scientists engage directly and respectfully with those they seek to help can be incredibly productive. Scientists talking to each other doesn’t hurt, either."

Press Conference

Dr. Francesca Happe speaking at the IMFAR press conference.
[Image: A beige-skinned woman speaking at a raised podium
with a microphone, to the side of a long table with an
off-white skirt, at which several other people are seated.]
The IMFAR Press Conference (our coverage is on Storify) featured selected research from the conference itself, and had some good examples of how research could improve, as well as how it can help existing autistic people.

It was also an example of how social media allows conversations that would previously be impossible. When J.D. Buxbaum discussed his study Oxytocin Reverses Social Deficits in the Shank3-Deficient Rat, a First Genetically Modified Rat Model for Autism, autistic people chimed in via Twitter, expressing concern that the researchers were studying rats than talking with them.
Standout press conference talks included:
Keynotes and Sessions
Roy Richard Grinker
[Image: Man with short silver hair, beige skin,
and glasses, speaking at a podium]

Roy Richard Grinker

The opening IMFAR keynote was given by anthropologist Roy Richard Grinker, author of the cultural/historical autism investigation Unstrange Minds and parent of an autistic young adult. The talk was titled Who Owns Autism? Exceptionalism, Stigma, and Stakeholders, and challenged his listeners to consider that autism is a cultural construct, the stigmatizing and culturally transformative powers of language and labeling, and other provocative ideas.
Our Storified live tweet coverage of Dr. Grinker's talk also includes his comments from the IMFAR stakeholders' luncheon.


John Elder Robison and Simon Baron-Cohen

Author John Elder Robison and researcher Simon Baron-Cohen told the audience many things a researcher-centric audience needed to hear during their session Autism & Society: Taking Stock of the History & Meaning of Autism Research. They spoke alongside Maureen Durkin, who talked about autism and intellectual disability as well as realistic evaluations of autism prevalence rates based on factors like diagnostic substitution, and Olga Solomon, whose talk Emic and Etic Perspectives in the Construction of Authoritative Knowledge on Autism gave me harrowing flashbacks to grad school Semiotics discussions and rendered me unable to tweet. Apologies to Dr. Solomon. (For complete session details, see our live-tweeted coverage.)

John Elder Robison
[Image: Man with short silver hair, beige skin,
and glasses, leaning on a podium]
Mr. Robison nudged the audience about its higher-than-typical exhibiting of autistic traits. He also passionately described the need to better identify autistic people and de-stigmatize autism -- so no one has to repeat his experience of becoming a star and then flaming out, both due to undiagnosed autism.  He also wants scientists and researchers to really to listen to autistic people -- and clarified that that wasn't an accusation. He received a standing ovation from the packed room.
Baron-Cohen talked about the difference language can make when discussing and diagnosing autism, and also about recognizing the needs of autistic people -- but to support, rather than normalize them.


Minimally Verbal Individuals SIG

I attended the IMFAR 2015 SIG (Special Interest Group) on Minimally Verbal Individuals. Most of the discussion happened in small groups. I joined the Adult Outcomes group, led by David Beversdorf from the University of Missouri. Even in the short time available, and with top experts at the table, it was clear that autistic adults have no guarantee they will receive the types of supports they need and deserve, that there's no one plan or infrastructure to support minimally verbal autistic adults long-term, and most that most families are under informed and unprepared about their autistic members' futures. Additional takeaways plus live tweets on Storify, feedback welcome.

Autism, Anxiety, and Math

The Autism, Conditioning, & Anxiety session was fascinating and covered information that was decidedly useful; details are in our Storify summary.

D. N. Top provided more evidence that anxiety doesn't just frequently co-occur with autism but is qualitatively different for autistic people -- as in, the structures of the brain itself react differently in autistic people than non-autistic people. This, obviously, needs more investigation.
And J. Beck did some welcome mythbusting, in demonstrating that, contrary to stereotypes, most autistic students in a sample did not have superior math skills -- most had average or even below average math skills. Talking about this study brought validation, to many autistic people, parents, and teachers following our live tweets from the session.

 
ASDtech Special Interest Group (SIG) and Discussion
 
I did not take a photo during the session,
so here is me and Sue from IMFAR2014.
[Image: two red-haired, beige-skinned
women smiling at the camera.
The one on the left is wearing glasses.
The one on the right dyes her hair. Shhh.]
Sue Fletcher-Watson of Edinburgh University led the ASDtech autism and technology SIG session and discussion. The SIG focused on ASDtech dissemination, specifically:
  • how and what to disseminate between researchers to permit replication and develop evidence of effectiveness
  • international dissemination issues: language, culturally appropriate content, available global dissemination routes
  • open source dissemination: why, when and how?  What about long-term consumer support and technology updates?
  • keeping researcher-developed and/or evidence based technologies up to date with latest commercial developments
  • other challenges to, and guidelines for, successful tech dissemination
The multi-disciplinary panel included yours truly, Shannon Des Roches Rosa of Thinking Person's Guide to Autism; Ofer Golan of Bar-Ilan University and The Transporters; Dan Smith, President of DELSIA, (Delivering Scientific Innovation for Autism); and Oliver Wendt of Purdue University/SPEAK MODalities LLC.

My full comments from the panel can be viewed at session writeup How Can Tech Benefit Autistic People? My primary takeaways:
  1. Help, don’t try to normalize autistic people. Keep the humanity of autistic people in the front of your mind at all times. They are people, not projects.
  2. Implement good design -- there is so much good tech content stymied by bad design!. This can also ease localization into other languages and cultures.
  3. In many countries and regions (e.g. Accra, Ghana) there is often no or little wifi, or even available devices. Tech has to work under those conditions.
Many autistic friends and colleagues responded to this writeup with specific thoughts about how ASDtech could help them.

Those who want to keep abreast of the state of ASD tech should make the most of Dr. Fletcher-Watson's DART (Development Autism Research Technology) project, at www.dart.ed.ac.uk.

IMFARchat: IMFAR2015's Twitter Chat and Roundtable

Some of the IMFARchat participants: John Elder Robison, Francesca Happe,
Amy Daniels, Michelle Villalobos, David Beversdorf, Greg Boustead,
Rachel Zamzow, Jamie McPartland, Simon Baron-Cohen
[Image: Nine people with open laptops gathered around
round white tables pushed together in a hotel conference room.]
SFARI (the Simons Foundation Autism Research Initiative) hosted IMFARchat, a live Twitter Q&A discussion of trending IMFAR 2015 topics. The chat included scientists from the conference and beyond, reflecting on some of the research presented and discussing next steps for advancing autism research. The conversation also included input from journalists and academic institutions, as well as voices from the public. It was an evidence-based success, with 5,117,314 Twitter impressions.

IMFARchat co-moderators Greg Boustead and Michele Villabolos kept the discussion flowing by posing questions, which were answered by an enthusiastic swarm of participants:

For details, SFARI provided a full transcript of the IMFARchat, and PFAnderson created a Storify version.
Looking pensive during IMFARchat. Photo © SFARI
[Image: red headed woman & silver haired man,
both with beige skin, both at open laptops.]

Other Notable IMFAR Research

Some of the more intriguing research we missed covering at the conference itself:

Rita George's work on Sexual Orientation and Gender-Identity in High-Functioning Individuals with Autism Spectrum Disorder (note medical model language). Results:
"When compared to controls, individuals with ASD demonstrated significantly higher sexual diversity, reported gender-identities incongruent with their biological sex, and higher gender-dysphoric symptomatology. Females with ASD reported higher rates of homosexuality and bisexuality than males with ASD, and higher rates of gender-dysphoric symptomatology."
You can participate in Rita's ongoing project by filling out her online survey on developing sexuality materials for autistic people. There are both quantitative and qualitative (personalized answers) versions of the survey.


Kristen Bottema-Beutel's work on Adolescent Judgments and Reasoning about the Failure to Include Peers with Social Disabilities. Summary:
"Adolescents with autism spectrum disorder often do not have access to crucial peer social activities. This study examines how typically developing adolescents evaluate decisions not to include a peer based on disability status, and the justifications they apply to these decisions."
Full article [PDF download available].


Lorcan Kenny's presentation How Should We Describe Autism? Perspectives from the UK Autism Community. Background:
"The language used to describe autism has undergone considerable changes since autism was first described. Changes have come from the medical and scientific communities, as diagnostic criteria and understanding of the condition have evolved, and from parent and self-advocacy groups, as the disability rights and neurodiversity movements have gained in prominence. These changes have been brought about partly due to important tensions in what people believe autism to be. Such changes also have important consequences as the way in which people choose to describe autism influences personal and societal perceptions of what the condition entails."

Lisa Croen's work on
Physician Knowledge and Experience with Autism in Adults:
"As children with autism become adults their primary medical care will move from pediatrics to adult medicine. There is little evidence of knowledge about autism among adult healthcare providers, and of their readiness to provide optimal care for this adult population."
Dr. Croen's work was also covered at SFARI.org:
"[Health care] providers admitted to being unprepared: 77 percent rated their ability to care for someone with autism as poor or fair. What’s more, they seemed unaware of how many adults with autism were in their care." 
And of course, these doctors could always look to the AASPIRE www.autismandhealth.org toolkit for better assessing the healthcare needs of autistic adults....

Musical Interludes

A few prominent conference speakers took over the pianos outside the main IMFAR conference halls -- mostly unnoticed by conference attendees. As I told one of the pianists, in this specific context it was like U2's recent adventures in getting away with incognito busking at a NYC subway station. It was also highly entertaining.

 



 
Final Thoughts

Things are getting better at IMFAR, in terms of how autistic people -- the reason INSAR and IMFAR exist -- are treated, included, and consulted in autism research. We still need more progress, though, in terms of determining best practices, supports, and services for autistic people in the here and now, moving away from objectifying medical model language, listening to autistic people about what they want and need instead of relying solely on family member and professional observations, and getting more autistic people to and involved with IMFAR/INSAR.

A final example of why IMFAR matters, why we need more of the unique synergies it makes possible when various members of the autism communities connect, happened after the ASDtech SIG. John Elder Robison joined a conversation I was having with a pediatric ophthalmologist about my comments during the SIG on the role simple tech can play in autistic qualify of life and learning. I was advocating for simple sensory screening with tinted glasses lenses, as per the advice autistic people themselves as well of UK author and practitioner Phoebe Caldwell, whom I heard speak on sensory issues last year at the National Autism Society Professionals conference:
The ophthalmologist looked skeptical, until Mr. Robison started talking not just about autistic sensory issues and interference, but, as a professional photographer, about the science of light, and why filtering out certain light wavelengths could actually make sense in the case of people who have trouble processing visual information. Mr. Robison seemingly handed the ophthalmologist an epiphany, one that might end up making a real world difference for that doctor's autistic clients. It was a lovely moment, and I was glad to be present when it happened.

I'd always heard that a Mormon missionary's year of service is considered a success if they convert one person. By that yardstick, IMFAR 2015 was indeed a win.