Showing posts with label INSAR 2018. Show all posts
Showing posts with label INSAR 2018. Show all posts
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How Autism Conferences Can Better Include and Respect Autistic People

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." 
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
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.

image: Four white people: Christina Nicolaidis, John Elder Robison, Sara Luterman, and Shannon Rosa, holding up copies of the journal Autism in Adulthood.
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 Luterman, Donna Bish, Andrew Colombo-Dougovito, Lily Levy,
Laura Crane, Mel Bovis, Carol Greenburg, Georgina 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."  
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On Autism and Social Camouflaging: An Interview With Lily Levy

Lily Levy at INSAR 2018
[image: Lily Levy, a white British woman,
presenting a poster at an autism conference.]
INSAR 2019, the International Meeting For Autism Research, starts in three days. Before we begin our coverage, we'd like to emphasize research and themes from last year's conference INSAR 2018, in Rotterdam—so we can proceed with a grounded sense of how the two conference's priorities compare and contrast, especially in terms of research that affects autistic people's quality of life (QoL).

A consistent QoL theme of INSAR 2018 was autistic camouflaging, also known as "masking" or "passing." We spoke with Lily Levy, who led the INSAR 2018 presentation For Better or for Worse? Social Camouflaging, Mental Health and Wellbeing in Autistic Adults. 

Content note: Discussion of suidicality, bullying, and trauma.

Shannon Rosa of TPGA: I’m at INSAR 2018 with Lily Levy, whose group presented the poster on Social Camouflaging, Mental Health and Wellbeing in Autistic Adults. Could you tell us more about the university that you’re at, and the team you’re working with?

Lily Levy: Yes, so I feel like a bit of an anomaly actually. I’m here as a bit of a weird outsider. This work that we  did on masking—well, camouflaging is the term that we’re broadly using for it—was done last year while I was an MSc student at UCL [University College London]. My supervisor is Dr. Will Mandy.

I was doing lots of work with Will and his wonderful PhD student, Laura Hull, who I think has got about one more year to go with her PhD. That was for my Master’s. I still speak to them a lot and am doing lots of work with them, My day-job is back in the National Health Service where I coordinate an autism assessment clinic for young people, between 5 and 13, without intellectual disability. And I’m part of the multidisciplinary team doing diagnostic assessments there.

As an assistant psychologist. I’m a member of the multi-disciplinary team conducting assessments. I do lots of work coordinating the clinic, [managing the waiting list, and contributing to the strategic  development [of the clinic], [for example] how we involve stakeholders in how we run the clinic and the work that we do.

TPGA: So how did you get involved with the masking study?

Levy: As part of our Master’s we all have to do a thesis and they advertise lots of topics online. I was sitting in the computer cluster with a few other people and we all saw Will’s study simultaneously and we all said, “I want to do that!” I’d worked in child and adolescent mental health services previously before my Master’s, and then a bit of research into child development and mental health, I’d done lots of work with autistic young women and it was something that really interested me.

And I think, clinically, most people have a case that’s kind of locked in their mind that provokes them to want to do certain pieces of work, and for me it was this young woman who came to us with an anxiety disorder  where we should have put her forward for an autism assessment. It would have been helpful for her, I think, and she would have got a diagnosis. But I was very young, I was 21 or 22, very junior on the team. I was pushing for it and senior members of the team were saying, “no”.

TPGA: I’m making a face.

Levy: An appropriate one. And so that, for me, has always been logged in my mind as one of those things where I think, “oh! I wish I’d done that differently!” I feel like a lot of the time I use that as motivation.

TPGA: So you actually want to get to the people who need the services but aren’t necessarily being identified?

Levy: For sure.

TPGA: We’re hearing about those situations a lot, and I’m sure you’ve seen it firsthand a lot. It seems like there’s almost a generation of women who missed out on diagnoses because of historical theories about the causes and underlying mechanisms in autism.

Levy: Yeah. And I think we haven’t done a good enough job at backtracking on that.

TPGA: If you were given free rein in terms of this backtracking, what would you like to see happen?

[much laughter among both women]

Levy: There’s been loads of incredible work that’s been done but I do think that we have done—for me this is a feminist issue—we have done autistic women a disservice, especially autistic women in their middle age [who may have been missed]. We have not done a good enough job at all,  in including women in autism research. The fact that we’re still sitting here at this conference and seeing studies with all-male samples makes me so irritated. It is just inexcusable. And disseminating this research, I think, in terms of the science communication, we’ve done a poor job at that because it’s taken an incredibly long time [for this research] to filter down into practice, still.

And then on a practice level we have a responsibility. I look around at my clinic where we have very complex, very interesting discussions about what it means to have a female autism phenotype. I think it’s not surprising that we’re able to have these conversations because we’re a team made up of women. And we are really struggling to help referrers understand—at the grassroots level, this is about families and it’s about referrers understanding that autism looks very different in different people, and making the referrals for these young people in the first place so they can have assessments. Because, generally speaking, when people get to the stage of having assessments, you would expect—you would hope—that that team is specialist enough to be making those nuanced decisions about, “well, actually, she’s just coping or camouflaging really well. But there’s a huge amount going on underneath and we need to be astute enough to see that and recognize what she’s telling us.”

TPGA: Okay. That’s interesting. How did you recruit people for a masking study?

Levy: We did a lot of work with ARC [Autism Research Centre] in Cambridge. Paula Smith, one of the co-authors of the study, did an incredible amount of work because she manages the Cambridge Autism Research Database, and helped us massively by recruiting participants from that. Then there was a large group of us using the same sample for different pieces of research, all centered mostly around camouflaging. Laura Hull was doing lots of the recruitment for that and we were all kind of pushing it on social media and recruiting from different pockets. I think it went out through the BPS Research Digest and through the Asperger/Autism Network (AANE). Lots of different places.

TPGA: How did you find people? What kind of language did you use to describe the people that you wanted?

Levy: We just said, “are you an autistic adult who is…” I’m not sure if we used functioning language or not, but ‘are you able to read,’ essentially, was the requirement, plus a diagnosis of autism. “Are you over 18 and would you like to fill out a questionnaire to help us with some research.” I think it was on "social behaviors," that’s how we couched it.

TPGA: So the data that emerged from that came from the cohort that you had recruited, rather than recruiting specifically for camouflaging?

Levy: Absolutely. A lot of the work on camouflaging that’s been done so far is qualitative, which is one of the reasons why I love it as a research area—it’s literally come from the words of autistic people. I think that’s one of the reasons why, in all of the areas of autism research that I’ve looked at and been part of, it feels like it’s the most genuinely respectful. 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.”

TPGA: I don’t know if you saw the INSAR 2018 op-ed I wrote for Spectrum, before the conference began?

Levy: No.

TPGA: It was basically about how this conference, specifically, has become much more autistic-informed. I would say that I was optimistic coming in, but it’s been even more intense and welcome than I had expected. I do wonder how much of that has to do with the proximity to the UK because, having gone to conferences in the UK and the United States, the UK ones were always leaps and bounds ahead, in terms of having autistic keynote speakers and being autistic-informed and autistic-led.

And then at this year's INSAR stakeholder luncheon we had John Spiers from the UK autism organization Autistica, and one thing he was mentioned that really impressed me was how Autistica was doing what you were talking about, how the direction of their research was autistic-informed. Autistic didn't merely ask, “well, what should we study?” They said, “let’s ask people what they want studied.” And then they don’t only want to do studies that with the goal of “let’s study this thing and find out what happens.” They want to study something and then come up with next steps. Which makes me wonder, did your study come up with any kind of actionable items?

Levy: So the findings of our study were related to camouflaging as measured by the Camouflaging Autistic Traits Questionnaire (CAT-Q) which Laura Hull has been developing. We also looked at objective-ish indicators of outcome in a really crude sense, like education status and relationship status.

And then we looked at measures of psychopathology, or mental health. Measures of depression, social anxiety, and generalized anxiety, and a measure of wellbeing, because we wanted to unpick a bit some of the stuff that we’re beginning to see emerging from the qualitative research. Generally most of this work has been done with women thus far, and they were saying that, “yes, we think that sometimes camouflaging is helpful for us because it allows us to pass essentially as neurotypical, but it’s exhausting. It takes a massive toll. It takes a huge cognitive load. It saps your cognitive processes. And it makes me feel like a fraud because I feel like I’m pretending all the time.” So we sometimes naïvely think, from a neurotypical perspective, that camouflaging is a super-positive thing. “Oh, we can make autistic people behave like neurotypical people.”

TPGA: And that’s why we’ve had ABA for so long.

Levy: Right. Exactly. And that’s one of the things that was lodged in my mind, actually. I don’t know enough about ABA to be a vehement critic of it but I do know what autistic people that I work with and who I’m friends with tell me. And that’s, generally speaking, what I’m going to go by.

But also, we think we do social communication interventions with children all the time and we present these strategies that we’re teaching them, you know, “you make eye contact like this” as universally helpful. Yet we know what happens in the brain for some autistic people when we force them to make eye contact. For some, it’s literally painful. So I was thinking about these interventions that we use and how we present them. What we found in the work that I presented here was that camouflaging score was a pretty good predictor of  higher scores on measures of depression, generalised anxiety and social anxiety.

TPGA: So a high camouflaging score…?

Levy: Yes. The more camouflaging you engaged in, the more likely you were to have a high score on a measure of anxiety, social anxiety, and depression. The [Camouflaging Score] had no impact on wellbeing. That’s not a negative impact; it’s just none. And I think it’s possibly because the measure of wellbeing that we used is not validated on an autistic population. We don’t have many good measures yet for quality of life.

TPGA: What kind of criteria did you use for well being?

Levy: We used a measure called the Warwick-Edinburgh Mental WellBeing Scales which is pretty widely used, but again—like most measures—not validated with autistic people. So I was really excited to hear about the work on quality of life and the World Health Organisation’s Quality of Life Measure (WHOQoL-BREF) that was presented [by David Mason and the researchers from Newcastle University] here, because I think it’s so important. That was the biggest thing that bugged me throughout the whole of this thesis, and I was frantically looking for “what can you tell me about wellbeing, quality of life, and outcomes for autistic adults?” And nearly everything that I was finding was about wellbeing and quality of life for autistic people's families: for their parents, for their siblings, or even for professionals working with them. I thought, this is very strange.

TPGA: Yes, it is.

Levy: I think perhaps the fact that the measure wasn’t validated properly on the population that we were working with and talking to was problematic. That’s something that I would probably change. So it’s not just that there’s no relationship between camouflaging score and wellbeing score, but  also, on those objective indicators of outcome higher camouflaging scores for men or women had no impact on whether or not participants were in relationships or whether they were in work. So you might think you’re much more likely to be in gainful full-time employment or in a romantic relationship if you can more easily pass as neurotypical. But actually, in our sample, which was pretty big—315 people—we didn’t find that.

TPGA: Wow. So there’s no associations to be made there?

Levy: Yet. It’s preliminary. We’d like to do more. But what was really interesting is that the "Suicide and Bullying in ASD" oral session. Sarah Cassidy at Nottingham—this is the first time I’ve seen someone do some similar work [with regard to negative consequences of camouflaging]—presented research that indicated that camouflaging was the best predictor of suicidality in their sample.

TPGA: Oh, hell.

Levy: I know. It hit me in the gut. I just thought, don’t tell me this isn’t important now.

[The suicide and bullying session] was the most powerful series—and everyone knew it would be, I think—there was some other stuff, like general suicidality in the autistic versus the non-autistic population, and it’s something like 17% of all autistic women had made a suicide attempt.

TPGA: And I think you said that it didn’t matter if there was intellectual disability or not—it was a similar rate?

Levy: Yeah, that’s what they said in the oral session. But you could hear people gasping and I looked around the row of the people I was sat with, and I think all of us were slightly fighting back tears because it was so shocking. And it’s stuff that we know and autistic people know but to see it so starkly laid out…

TPGA: This is the third year in a row that Sarah Caassidy has presented on suicide at INSAR. We interviewed her two years ago, when was still on the preliminary part of the study and it just seems like the more she finds out about the reality of autism and suicidality, the more depressing it is.

Levy: That's why I think it’s important to be attached to research institutions and to research groups like the one I was working with at UCL, that work so closely with great autistic researchers and advocates—people like Robyn Steward, for example. You have to have those voices in the work that you’re doing, and somebody to lance it slightly and say, “this is nonsense,” or, “you need to add this up, actually this is what’s important. Your focus is wrong.”

TPGA: Yeah, we just don’t have anything like Autistica in the U.S. We just don’t. We have the Autistic Self Advocacy Network but they work more on policy and resource, not so much on funding and guiding research—even though they have members who sit on the IACC [Interagency Autism Coordinating Committee], which is the autism policy advisory board for the National Institute of Health. But nothing equivalent to Autistica. Just hearing Mr. Spiers describe actually what Autistica does in the UK made me think, “Ah! That’s what we need in the U.S.!”

Levy: Yeah. I think it would be awesome to see similar things springing up—because you can tell there’s an appetite.

TPGA: We do have AASPIRE which has been great in terms of participatory research, specifically in health and well-being, I don’t know if you know of them.

Levy: Yes, they’re awesome

TPGA: Yeah, AASPIRE has been around since 2006, but they’re basically three people as opposed to Autistica which has a budget of two million pounds, they said. Something like that.

Well, is there anything that we didn’t ask you about that you wanted to talk about with regards to your work?

Levy: Not really, I guess. We’re just thinking about how to develop it and where to take it next. We’re thinking about its applications and implications. I’m particularly interested as someone who is a practitioner as well. I do post-diagnostic work with families and with young people. I want to think about how we can get other people to do similar things [discussing camouflaging and its potential impacts with young autistic people who have just had a diagnosis].

There are also lots of amazing different ways of operationalizing camouflaging so we’ve used this questionnaire that Laura has developed, which is great. But there are also other people like Professor Meng-Chaun Lai at the University of Toronto, who use a kind of discrepancy-based approach to camouflaging: Taking the difference between your internal autistic state [for instance on self-report measures of autistic traits] and a kind of more external, behavioural state as measured by the ADOS. And the difference between those two scores indicates the level of camouflaging—which is a really elegant way of doing it.

It would be really great to see if we could do a bit more replication to think about how much this research bears out in terms of the positive and the negative outcomes and affiliations, I guess, of camouflaging in autistic people. It’s really important that we carry on doing that with mixed samples because we haven’t quite teased out what those gender differences are yet at all, and it’s really important that we do.

TPGA: Oh, and just in terms of the gender differentiation, did you have just men and women? Did you have any trans folks in your group? Is there any way to quantify for that?

Levy: There was a very small number of non-binary people, and I couldn’t work out how to factor that in [to the analysis just yet], in terms of power, so I think maybe we could have done a bit more specific recruitment, especially now knowing what I know after the gender talks here. I think it would be really interesting and super important, just based on the numbers, that that’s represented somewhere.

TPGA: Cool. Well, thank you very much for talking with me. I really appreciate it.

Levy: Thank you.

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Transcription by Max Sparrow
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INSAR 2018: Autism and Suicidality Special Interest Group (SIG)

Sarah Cassidy's INSAR 2018 SIG on autism and suicidality 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.

The statements and images below are from our original Twitter Moment compilation/report on this SIG. We then heard back that Twitter feeds can be difficult to parse and access for some, so we've created this version as well, edited for readability. Uncredited statements are from the Thinking Person's Guide to Autism Twitter feed.

----

Jon Spiers:
Morning session on suicide and autism starting now at INSAR 2018 - a top priority for Autistica and Mental Health in Autism.
At INSAR 2014, Sarah Cassidy was the only poster on suicidality. Now there is an entire INSAR 2018 track on autism, suicidality, and bullying.

At IMFAR (INSAR) 2016, the SIG goal was to identify priority topic areas. At the 2017, the SIG identified research questions. In 2017, at a summit in the UK, Dr. Cassidy worked on developed theses.

Autism and suicidality overview: Some aspects:

  • Ethics: Does talking about suicide increase risk? 
  • Risk/protective factors: Gender, communication, belonging, lack of joy, disclosing, diagnosis, help seeking, sleep difficulties.
  • Treatment/prevention: "we just don’t know what works"
Advances in research on autism and suicide.
Photo by Sara Luterman
[image: Side. Blue bar at top with white text reading" Progress so far"
The rest of the slide has a white background with red text reading,
"•1 INSAR poster presentation on suicidality in autism in 2014
•INSAR 2018 oral presentations strand "Suicide and bullying and
number of additional posters
•Presentations across numbers of labs
•Increased sample sizes, comparison groups included, looking at the
*why* question"]
Now: Abigail Thompson from Autistica, the UK’s autism research charity, which aims to help autistic people live long healthy happy lives which makes me cry because Autism Speaks and Autism Society: why aren’t your missions this clear and simple?

Sara Luterman:
I know I gush about @AutisticaUK a lot, but I’m going to keep gushing about them as long as they keep leading the world in funding research that actually makes a difference in my life.
Photo by 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"]
Factors: Lack of belonging: “If you don’t belong, you’re gone”
  • What does belonging mean to #autistic people, and how can it be captured?
Sleep difficulties: Important and under-recognized/diagnosed in autism. Also important to define and measure: night awakenings, nightmares?

Development of appropriate assessment tools: They have been developed for the general population, but not yet validated for #autistic people. General questions may not be clear or relevant for autistic ppl.

Social communication: Over/under reporting of suicidality?
  • Literal interpretation of questions: “We mean what we say.” 
  • Negative experiences could lead to masking: “We learn to say we are fine” 
  • Need to consider lived experience in assessment.
Help seeking. Increased barrier for support/treatment.
  • Do negative experiences impact willingness to seek help (e.g., not feeling believed?)
One approach Autistica is taking on underfunded but crucial autism areas: Writing accessible reports, and taking them to the agencies who could possibly fund them (in the US and UK).

Disclosing diagnosis: “You want the right people to know” Exploring experiences of disclosing, and how and when this may impact suicidality.

Risk/protective factors: What keeps people here? …special interests; we need to make sure we aren’t “pathologizing passion”; positive social interaction where desired in the way it is desired.

Conceptualization: Phenomenology of suicidality in autism: Quality of life more important than mental health? What does a “good life” look like?

In every country in the world, there are more undiagnosed adults than diagnosed. This is a fact. This is a factor. This is a risk.

Could religion or other value systems that discourage suicide be a protective factor? Research indicates this is possible.

The strength of the autistic community is what keeps many autistic people going, and mitigates feeling like one doesn’t belong— especially when there’s very little support available.

Medication: “If our brains are wired differently, then medication must have a different effect upon us.” We need to explore the effectiveness & side effects of meds in autism. How do meds interact with autistic traits? Are antidepressants a risk?

Dr. Eileen Crehan:
And even once we are aware of different effects, how can we train more psychiatrists in this area of specialty? Access to medical providers with knowledge of ASD is limited!
Autistica is working with organizations to find out what kinds of mental health services are most helpful. Many autistic people find phones and going to ER/emergency services aversive. Would a text-based chat service be more useful?

We think autistic people are more likely to have a short span of time between considering suicide and acting on it (impulse control?). They also tend to choose more final methods, but research is forthcoming. Limited access to methods may help.

Gender differences: Autistic females are more at risk of suicide, compared to general population. Why? Masking? Late diagnosis? Differences in communication, suicide planning, methods?

Many autistic people are able to realize that being in an extremely aversive in-patient/hospitalized situation is better than being dead — but those shouldn’t be the only options. Need more humanistic, autism-friendly options for those in crisis.

Suicidality can be due to needing to "release pressure.” Especially when aware mental health services don’t recognize autistic symptoms/experience. 

Some autistic people find meds can help with compulsive thoughts that can build to suicidal impulses.

Lack of joy: “How do we find joy in a world that doesn’t understand us?” 
  • Autistic people discussed that stressors associated with being autistic can make life feel joyless. Does this increase suicidality risk?

Jon Adams:
Talking suicide & autism 
but maybe I don’t understand as they’re only including ‘attempts’ 
What about those of us that have ideation ‘all the time’ due to co-morbid conditions such as PTSD or are so isolated they ‘don’t feel they belong’ 
#INSAR2018 #AutisticCultureShift
Some commonly prescribed medications for co-occurring conditions (or medication prescribed for “autism”) have known risks not just for elevating suicidal ideation, but possibly causing other physical symptoms (tics etc.) that increase distress.

Need to be cautious about making autistic people in mental health crisis join group “mindfulness” efforts that are aversive (e.g., visualizing exercises may be NOT GOOD for synesthetes), increase feeling of not belonging, then blamed for “failing."

Maxfield Sparrow:
I am on the aphantasia spectrum. Visualization exercises are really weird experiences for me.
How effective are current therapies for suicidality in #autistic people? Can these therapies be adapted?

Response and prevention: Important to identify and respond to potentially stressful life events (leaving/changing schools).

Jon Adams:
This is great 
a small ‘table’ of #ActuallyAutistic people talking feeding in ‘lived experiences’ informing with researchers sat with us 2 develop projects = studies = policies with our “voice” at the core 
@slooterman @shannonrosa @AutisticaUK @YesWeJon #SuicideAutism #INSAR2018
Shannon Rosa:
Would like to know more about suicidality in autistic ppl w/communication disabilities (non-speaking) or intellectual disability/learning disabilities. I wonder, hard, how many written off as “aggressive” or self-injurious are actually suicidal.  
And everything that has to do with preventing or containing or medicating these behaviors, rather than understanding/mitigating distress factors is making people with profiles similar to my son’s even more miserable. 
This keeps me up at night.
Sara Luterman:
There is no autism-specific drug research on preventing suicidality. As long as the method being looked at isn’t a chemical straitjacket, I’m all for pharmaceutical research on this topic. 
Shannon Rosa:
Yes definitely. I am opposed to chemical straightjackets and for understanding autistic mindsets/motivations; the latter includes appropriate meds, as needed.

Sara Luterman:
Protip: 24/7 invasive tracking of everything I do isn’t going to make me less suicidal. I suspect this is true for most autistic people, of all ages. Treat us like we’re human, because we are.
Shona Dav:
It’s true that a mental health crisis might prompt a diagnosis. 
But also masking prevents diagnosis and masking increases mental health problems so that might change the data in the opposite direction. 
It is hard to get any reliable autism stats cos we are under identified in my view.
Autistic kids (and adults) have a high rate of co-occuring conditions like OCD, anxiety, depression, etc. that can interfere with quality of life and happiness. If they are in distress and medications can help, they should have access to those meds.

James Cusack:
  1. There is a need for a strategic coordination network for research area in order to enable high quality research and rapid progress. 
  2. To drive suicidality research forward we need a clear strategy bringing together research in to i) risk/protective factors, ii) intervention/assessment and iii) policy and practice.
Handout from the INSAR 2018 Autism and Suicidality SIG: Suicidality factors flow chart:



[Image desciption for Autism and Suicidality factors flow chart.

Black text in titled boxes on a white background, in landscape orientation. Boxes’s text content from left-to-right, top to bottom:

Lack of belonging:
“If you don’t belong, you’re gone”
What does belonging mean to autistic people and how can it be captured?

Help Seeking
Increased barriers for support/treatment?
Do negative experiences impact willingness to seek help (i.e., not being believed)

Disclosing diagnosis
“You want the right people to know”
Explore -ve/+ve (negative/positive) experiences of disclosing autism diagnosis
How and when may this impact suicidality

Gender differences
Autistic females are moe at risk of suicide than males - opposite to general population, why?
•”Masking”
•Late diagnosis?
•Differences in communication, suicide planning, methods?

Sleep difficulties
Risk marker in Gen Pop - impacts capacity to cope
Important and under-recognised/diagnosed in autism
Important to define and measure: night awakenings, nightmares?

Risk/Protective Factors
“What keeps people here? …special interests; we need to make sure we are not “pathologizing passion”; positive social interaction where desired in the way it is desired.”

Lack of Joy
“How do we find joy in a world that doesn’t understand us?”
Autistic People discussed that stressors associated with being autistic can make life feel joyless. Does this increase risk of suicidality?

Development of Appropriate Assessment Tools
Suicidality assessment tools have been developed for the general population, and not yet validated for autistic people - questions may not be clear or relevant for this group.

Conceptualization
Phenomenology of suicidality in autism
Risk Protective Factors
Exploring and adoption existing models of suicidality
Quality of Life more important than mental health? What does a “good life” look like.

Treatment Approaches
“We don’t know what works”

Social Communication
Over/under reporting of suicidality?
Literal Interpretations of questions? “We mean what we say”
Negative experiences could lead to masking: “We learn to say we are fine”
Need to consider lived experience of autistic people in suicidality assessment (e.g., lack of belonging)

Psychosocial Interventions
Few studies of adapted interventions for autistic adults - added complexity of suicidality.
What people need depends on the profile they present with (e.g., virtual reality to treat anxiety in autism).
How effective are current therapies for suicidality in autistic people? Can these therapies be adapted (e.g. DBT)?
In terms of response and prevention, important to identify and respond to potentially stressful life events such as transition (e.g., leaving school, going to University)
Online support is a potential opportunity
Tiered support? Or does this close doors?

Medication
“If our brains are wired differently then medication must have a different effect upon us”
Explore effectiveness and side effects of medication in autism
Is anti-depressant medication more likely to increase suicidality in autism than in the general population?
How does medication interact with autism characteristics?

(End text box descriptions and contents)

Arrows lead from “Conceptualization” to “Risk/Protective Factors” “Development of Appropriate Assessment Tools” and ”Treatment
Approaches”

Arrows lead from “Risk/Protective Factors” to “Sleep Difficulties” “Lack of Belonging” “Help Seeking” “Disclosing Diagnosis” “Gender Differences” and “Lack of Joy”

Arrows lead from “Treatment Approaches” to “Medication” and “Psychosocial Interventions”

An arrow leads from “Development of Appropriate Assessment Tools” to “Social Communication”

An arrow leads from “Social Communication” to “Adapting Current Tools”]
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#AutINSAR 2018: What Do Autistic People Want from Autism Research?

Some of the onsite #AutINSAR participants, left to right: Jon Adams,
Sara Luterman, Donna Bish, Andrew Colombo-Dougovito, Lily Levy,
Laura Crane, Mel Bovis, Carol Greenburg, Georgina Perez Liz,
and Shannon Rosa. Not pictured: Jelle van Dijk
Photo by Josie Blagrave. 

[Image description: Neurodiverse adults smiling and posing together]

The #AutINSAR chat was an in-person and online Twitter discussion about autism research priorities, with the conversation taking place directly between autistic and/or autism researchers on May 11, 2018, at #INSAR2018, the International Society for Autism Research conference in Rotterdam, Netherlands.

Many thanks to participants, and partners NOS Magazine, Autistic Self Advocacy Network, Autistic Women and Nonbinary Network, autchat, and We Are Like Your Child.

We discussed the following questions:
Q1: What should be the top three priorities for autism research? 
Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations? 
Q3: What kind of technology research do you think would most improve #ActuallyAutistic people’s lives? 
Q4: What are examples of existing autism research that look promising for helping #actuallyautistic people? 
Q5: Which co-occurring conditions need more research attention, and why? 
Q6: What are some concerns of minority autistic community members that don’t get enough research attention? 
Q7: How can we better support #ActuallyAutistic autism researchers? 
Q8: Any topics we’ve missed that you’d like to discuss?

Who participated in #AutINSAR?





Q1: What should be the top three priorities for autism research?












Q2: Which topics do #ActuallyAutistic people discuss that are missing from research conversations?









Q3: What kind of technology research do you think would most improve #ActuallyAutistic people’s lives?








Q4: What are examples of existing autism research that look promising for helping #ActuallyAutistic people?





Q5: Which co-occurring conditions need more research attention, and why?











Q6: What are some concerns of minority autistic community members that don’t get enough research attention?




Q7: How can we better support #ActuallyAutistic autism researchers?




Q8: Any topics we’ve missed that you’d like to discuss?






Thanks so much for joining #AutINSAR! 



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