Shannon Des Roches Rosa

Senior Editor, TPGA

[Content note: This article discusses suicidality and ableism]

The 2019 International Meeting for Autism Research in Montreal begins today, so let’s discuss how autism conferences can best help the autistic people without whom autism conferences would not exist—based on how past autism conferences have gone, what can improve, and why participatory research (involving autistic people themselves) needs to be prioritized.

Last year’s INSAR 2018 conference gave me some hope for the future of autism research. I’d never before seen anything like the slide below at any INSAR conference, not since I first started attending INSAR in 2011 (when it was still “IMFAR”). This Autistica slide, with the the motto of “Long, happy, healthy lives for all autistic people” encapsulates everything I want from INSAR presenters, and autism research:

Photo: Sara Luterman

[image: Projected slide showing a group of human faces in profile,

facing right, in white, blue, and dark orange. Orange text on the left reads,

 “Long, happy, healthy lives for all autistic people.” Text at the bottom of the slide

reads, “Autistica” and “Dr. Abigail Thompson”]

It was about damn time that INSAR made autistic people feel welcome and centered. Even so, being the cockeyed optimist that I am, before INSAR 2018 I had already noted how INSAR (then-IMFAR) has become more inclusive of autistic people’s priorities, since I first started atteneding in 2011:

“I remain hopeful that these meetings will continue to evolve to meet the needs and interests of autistic people. The schedule for this year’s meeting suggests it will. It features collaborations with autistic people and panels on adolescent and adult issues, mental health, sexuality and quality of life and services.”

That hope wobbled when faced with the research covered at the INSAR 2018 press conference, which did not reflect those topics so much, and was a mixed bag: from reassuring parents that autistic kids being bilingual and having screen time was OK, to intriguing brain structure analyses, to yet more robot saviors for autism.

Yet I was grateful, over the three days of the conference to see the #INSAR2018 Twitter stream dominated by autistic people and autistic-informed perspectives:

I was also glad to see autistic-informed research such as Lily Levy’s work on the fallout from autistic camouflaging or “masking.” As Levy told us when we interviewed her at INSAR 2018, “We’re learning from the experiences of autistic people, instead of imposing this top down research driven, like, “now we’re going to look at your genes.”

Additionally impressive was Sarah Cassidy’s INSAR 2018 Special Interest Group (SIG) on autism and suicidality, the third such INSAR SIG in three years, which brought ~60 autistic people and autism researchers and professionals to discuss research on, and factors underlying and mitigating, suicidality in autistic people—as well as next steps for researchers. Cassidy’s group continues to do excellent work, recently publishing a paper showing that,

“On the basis of our findings, services should be alerted to the high lifetime risk of suicidal ideation and suicide plans or attempts, especially in individuals receiving a late diagnosis of Asperger’s syndrome, in view of the substantial risk in this group.”

But despite all the ways in which INSAR 2018 addressed the concerns and well-being of autistic people, journalist Cos, who is from the UK, and who was attending INSAR 2018 for the first time as an Autistica autistic ambassador, was not impressed overall. She had this observation on the conference:

“I knew it would be shocking, but the degree to which the language negated us was overwhelming. Amongst many researchers, it was the casual talk of deficit, of risk, the othering of classification: we were children with autism, males or females with autism. We were people with autism and their interest was in the autism, not the people.  I’ve heard farmers speak of their cattle with more respect for individuality.”  

Per Cos’s take, researchers need to stop treating autistic people like objects. I encourage every researcher who studies autism to read Becca Lory’s article What is it like to participate in research as an autistic person?, at Autism in Adulthood, for a primer in what fair and considerate practices (and do not) look like.

You should also read what autistic advocate Morénike Giwa-Onaiwu said to WHYY on the missed opportunities of most contemporary autism research, and why researchers need to engage with autistic people themselves: “It’s looking at autism as the problem instead of how to improve the world around us so that autistic people can thrive.”

With autistic people making it clear that they don’t like being ignored on autism issues, why are autistics still having to fight for recognition and validity at autism conferences? It’s not for lack of feedback. INSAR board member John Elder Robison made a barnstorming plea to autism researchers to prioritize autistic people in 2014. At INSAR 2018, he continued this theme, noting,

“I asked the researchers if they recognized that they were not studying life with autism, but rather parental interpretation of life with autism. Accurately studying life with autism means studying actual autistic people, not people who watch us.”

It was also in 2014 that I presented at a National Autistic Society (NAS) professionals conference in the UK, and was astounded by how remarkably advanced that conference was, in terms of autistic inclusion. It is NAS policy to open up their conferences with autistic keynote speakers, to set an “us” rather than “them” tone, and make it very clear who the conferences are meant to benefit.

That NAS conference’s approach to including and respecting autistic people was revelatory to me, because it was as recently as 2012 that I sat in the back of an IMFAR keynote presentation, listening to a presentation with autistic friends about how they had no empathy or ability to make…friends. (We all laughed openly.)

But 2012 was before UK autistic autism researcher Damian Milton put forth his Double Empathy theory made it clear that “theory of mind” needs to go both ways, in interactions between autistic and non-autistic people:

“Whilst it is true that autistic people can struggle to process and understand the intentions of others within social interactions, when one listens to the accounts of autistic people, one could say such problems are in both directions.” 

Sara Luterman and Damian Milton, during INSAR 2018

[image: Sara Luterman, a white person with glasses and a knitted cap,
and Damian Milton, a white man with a salt-and-pepper beard,
on a Rotterdam street littered with bicycles.]

Though Milton and other autistic folk, including autistic researchers, are increasingly and openly attending autism conferences, this objectification of autistic people continues to happen. But, a shift is happening, in which mischaracterizations of autistic people are longer always tolerated. At the 2018 NAS professionals conference, psychiatrist and researcher Iain McClure he gave a talk advancing embarrassingly objectifying theories about autistic people. He was chastised on the spot by Linda Buchan, a neurodivergent clinical psychologist, who, according to Dean Beadle, an autistic lecturer and former journalist who was present,

 “…called out his regressive, negative and offensive tone and made it clear that those views are a thing of the past. She spoke up for all of our community today and she is a hero. She richly deserved the cheers, claps and ovation that she got.”

What can conference planners do to avoid mistakes like McClure’s ableist speech? (Or avoid getting called out publicly for making ableist gaffes?) We spoke to the NAS’s Carol Povey after the McClure incident, and she said that while the NAS gives its lecturers guidelines on respectful language about autism and autistic people, sometimes people like McClure ignore them—to their peril. We advise autism conference planners to both follow the NAS’s example and try to provide guidelines for respectful language, and to also use The Autistic Self Advocacy Network’s freely available guidelines for Making conferences autism-friendly, which reminds planners that, “The autistic spectrum includes a wide variety of persons with a wide variety of support needs. Planning ahead for your Autistic guests will help establish equal participation.”

For autism research-specific events like INSAR, folks need to look to orgs like The Participatory Autism Research Collective, “A community for people who want to promote autistic involvement in autism research,” and who specifically called out the McClure incident. If we promote an attitude of more participatory approaches to research, ones in partnership with autistic people, that approach will ideally translate to the research presented at INSAR, and the way it is presented.

What does participatory research look like? The August 2018 article Making the future together: Shaping autism research through meaningful participation, from Sue Fletcher-Watson, Jon Adams, Kabie Brook, Tony Charman, Laura Crane, James Cusack, Susan Leekam, Damian Milton, Jeremy R. Parr, and Elizabeth Pellicano discusses how:

“Specific manifestations of participatory research might include leadership by autistic researchers, partnership with autistic people or allies as co-creators of knowledge, engagement with the community in general (e.g. via social media) and consultation with relevant individuals or community organisations.”

INSAR professionals would also do well to heed formal autistic/researcher collaborations such as Shaping Autism Research, and AASPIRE. The latter org brought to INSAR 2018 hard copies of the inaugural edition of its journal Autism in Adulthood—full of juicy insights about autism and autism research from autistic adults.

Hard copies of Autism in Adulthood’s inaugural journal!

[image: Four white people: Christina Nicolaidis, John Elder Robison, Sara Luterman,

and Shannon Rosa, holding up copies of the journal Autism in Adulthood.]

Also useful: AASPIRE recently published “practice-based guidelines for the inclusion of autistic adults, both as research team members and as study participants.” And Jac den Houting spoke on prioritizing autistic voices in autism research at the Frankl Open Science Platform:

“Participatory research is important for a number of reasons: empowering the community, ensuring quality data, and making sure that the studies carried out have real potential to improve the lives of people with autism.” 

Finally, try to walk the walk of researcher Rosalind Picard, who presented her research on meltdown-detecting wearables for autistic people at INSAR 2018 (as reported by Sara Luterman at NOS Magazine):

“Dr. Picard began her keynote by stressing the importance of autistic feedback in her work. She recalled an autistic friend’s observation that ‘my biggest problem is not understanding the emotions of others. My biggest problem is you are not understanding my emotions.”

Thankfully, at INSAR 2019 there will be a way for researchers to figure out how to do right by autistic people: Participating in or following the AutINSAR Twitter chat, an in-person and online discussion about autism research priorities, with the conversation taking place directly between autistic and/or autism researchers. AutINSAR 2019 will take place on Thursday May 2, at 12:30, in the INSAR Press Room. (Until then, please peruse the AutINSAR chats of 2018 and 2017.)

Some of the onsite #AutINSAR participants, left to right: Jon Adams,
Sara LutermanDonna BishAndrew Colombo-DougovitoLily Levy,
Laura CraneMel BovisCarol GreenburgGeorgina Perez Liz,
and Shannon Rosa
Not pictured: Jelle van Dijk
Photo by Josie Blagrave

[Image description: Neurodiverse adults smiling and posing together]

Overall, we know that autistic research priorities need to be more balanced: We need just as much research into quality of life issues as we do in brain structures and genetics. A short list of topics autism researchers could put more weight behind, and thus support the autistic people their work is supposed to be about, include investigating co-occurring conditions like Ehlers-Danlos, the real-world effects of “Early Intervention,” and how negative interactions with medical professionals affects autistic people’s access to medical care. For a start.

I’ll leave you with a quote from Sue Fletcher-Watson‘s post-INSAR 2018 thoughts, and a stance which I share: “Here’s hoping that at INSAR 2019 and beyond we might hear from a few more scientists whose methods inspire the community as much as they dazzle their fellow scientists.”