Tuesday, April 30, 2019

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 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."  

AutINSAR Twitter Chat 2019: What Autistic People Need From Autism Research

What do autistic people need from autism research? What is current autism research doing right? How does research let autistic people and their families down, and why? And how can we convey these concerns to autism researchers? That is what #AutINSAR is all about: a conversation between autism researchers and autistic community members, both in person and on Twitter. We had fantastic conversations at IMFAR 2017 in San Francisco, and again at INSAR 2018 in Rotterdam, and are hoping for another fruitful discussion this year during INSAR 2019 in Montreal, Canada.

AutINSAR will once again be a partnership between us and The Autistic Self Advocacy Network (ASAN), NOS Magazine, Autism Women and Nonbinary Network (AWN Network), AutChat, and We Are Like Your Child. We welcome new 2019 partners Flow Observatorium and Autistics 4 Autistics Ontario.

The Twitter logos for seven organizations:  The Autistic Self Advocacy Network: a spiraling rainbow heptagon on a white background;  Autism Women and Nonbinary Network logo: White circle on a gray background containing a pink lowercase "a" alit by an illustrated light blue butterfly, above black lowercase text reading "awn network," above two blue banners with lowercase black text reading "autism women & binary network" and "awnnetwork.org";  NOS Magazine: a black circle on a white background, with an illustration of an incandescent light bulb drawn in white and surround by a sunburst in dashed rainbow colors;  Thinking Person's Guide to Autism: All-caps black text on a white background reading "Thinking Person's Guide to Autism," with "Person's" in white text on a black arrow;  The autchat logo of a lowercase black letters a and c, divided by a black staff with curved serifs on top and bottom and strike through, on a white background;  Flow Observatorium logo of two boxes, the first white with black outline, black letters "Fl" followed by superscript number 33, the second a black box with white letters :"Ob" followed by superscript number 79; and the Autistic 4 Autistics logo of a white background with a red block font letter "A" next to a red number 4, followed by a second red block font letter "A"
#AutINSAR Partner Orgs: ASAN, AWN Network, NOS Magazine, TPGA, 
autchat, Flow Observatorium, and Autistic 4 Autistics Ontario
(Not pictured: We Are Like Your Child)
[image: The Twitter logos for seven organizations:
The Autistic Self Advocacy Network: a spiraling rainbow heptagon on a white background; 
Autism Women and Nonbinary Network logo: White circle on a gray background containing a pink lowercase "a" alit by an illustrated light blue butterfly, above black lowercase text reading "awn network," above two blue banners with lowercase black text reading "autism women & binary network" and "awnnetwork.org"; 
NOS Magazine: a black circle on a white background, with an illustration of an incandescent light bulb drawn in white and surround by a sunburst in dashed rainbow colors; 
Thinking Person's Guide to Autism: All-caps black text on a white background reading "Thinking Person's Guide to Autism," with "Person's" in white text on a black arrow; 
The AutChat logo of a lowercase black letters a and c, divided by a black staff with curved serifs on top and bottom and strike through, on a white background; 
Flow Observatorium logo of two boxes, the first white with black outline, black letters "Fl" followed by superscript number 33, the second a black box with white letters :"Ob" followed by superscript number 79;
and the Autistic 4 Autistics logo of a white background with a red block font letter "A" next to a red number 4, followed by a second red block font letter "A".] 
Autism research tends to focus more on causation, normalization therapies, and cures than on helping existing autistic community members. From both practical and human rights perspectives, this needs to change. Too many core matters affecting autistic people's health and quality of life are still under-researched, and, as a result, proper supports and understanding are too often lacking.

The #AutINSAR discussion hopes to help autism research better serve the interests of autistic people, and more fully address the research matters autistic people want addressed.

With this in mind, #AutINSAR is meant to connect autistic communities with autism research communities directly, during INSAR, the International Meeting for Autism Research. Such conversations don't happen often enough at INSAR due to a variety of barriers: costs, conference environment that are overwhelming from both sensory and social angles, confronting ableist people in the real world, the stress of traveling, etc.

If you are an autistic person who is interested in autism research and/or an autism researcher, we hope you will participate in this year's #AutINSAR.

#AutINSAR DETAILS
  • Thursday, May 2, 2019
  • 12:30-1:30 PM Eastern Time (9:30 AM PT / 5:30 PM GMT)
  • INSAR conference Press Room
    • Room 523B at Palais des congress de Montreal
      1001 Place Jean-Paul-Riopelle
      Montréal QC H2Z 1X7 Canada

HOW TO PARTICIPATE

Monday, April 29, 2019

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.

----
Transcription by Max Sparrow

The Importance and Power of Autistic Self Diagnosis

White person with blue eyes and a Freddie Krueger sweater taking a selfie in a mirror,  except a smaller circular mirror is inverting their face where their head would usually be.
Image © Stig Andersen | Flickr / Creative Commons
[image: White person with blue eyes and a Freddie Krueger sweater taking a selfie in a mirror,
except a smaller circular mirror is inverting their face where their head would usually be.]

Solveig Standal

We autistics need to have a serious talk about autism and self-diagnosis: what self-diagnosis means, and what effects it will have on us when inevitably both autistic and non-autistic people attempt to gatekeep our own autistic identities.

Ultimately, we know that it’s not autistic people who dictate who we allegedly are and what is allegedly best for us. Neurotypicals continue to dominate the conversation and speak over autistic voices, which ultimately reinforces a pathologizing viewpoint about us, and centers around the idea that somehow we fundamentally cannot speak for ourselves, purely because of our neurology.

The medical community continues to ignore people who do not fit the white cisgender male stereotype of autism—something that more closely resembles the cultural images of Rain Man or Sheldon Cooper. The medical community, as well as charities run on our behalf by non-disabled people, frequently overlook autistic girls and people of color. In the United States, the CDC does not even publish prevalence rates of autism in adults. Effectively, this means that the needs of most autistic people continue to be ignored, and the accommodations that are provided have a tendency to drop off as we reach adulthood.

We know what it’s like to see autism charities run by neurotypicals, whose primary focus is to paint a picture where we are the burdens that they must endure. At best, we are inspiration fodder intended to make neurotypicals feel better about themselves. At worst, we are portrayed as the driving wedge that ruins otherwise-healthy marriages. We are portrayed as highly disruptive, problematic, unteachable. We are portrayed as literal puppets, and given no autonomy whatsoever.

We know what it’s like to have our needs constantly ignored by the people who are supposed to be supporting us. Personally, I have sat in countless meetings centered around my disability accommodations in public school, where teachers and counselors discussed my situation as if I were not even in the room. Where so many people were very eager to tell me who I was, and what I needed, and how I felt, and where they all seemed to insist that they knew me better than I could possibly ever know myself. And as hard as things were for me, I know I would have been abused even worse if I were not white. Racism and police brutality is an inextricably critical part of understanding the dynamics of abuse we face every day.

I grew up in the 1980s in a very rural setting, and our access to information about autism was extremely limited. One of my earliest memories was a television news special about autism, where they asked questions about whether or not we were really people inside, or just walking automatons. At a later date, my parents were interviewed about me. I very distinctly remember the news channel interviewer describing the "emptiness" in my eyes, as if there was nobody inside of me. As if I were not a real person.

This was also during a time where Bruno Bettelheim and Andrew Wakefield’s beliefs were so widespread; they argued that autism was caused by vaccines, or by cold and unloving mothers. Self-proclaimed autism professionals preyed on parents of autistic children, demanding them to go to extreme measures in false hopes that they could cure us of our autism. They also pressured parents into therapies that were designed to make us look less autistic, probiotic diets, gluten-free diets, and more. One doctor, after spending less than five minutes with me, suggested that I should immediately be institutionalized. Finally, seeing no other options, my parents contacted the only autistic self advocate they knew of—Dr. Temple Grandin.

Dr. Grandin wrote back and explained autism to my parents in a way that only an autistic person could. She explained to them how I was not broken, I didn't need to be fixed, and I didn't need a cure. Ultimately, the best thing for them to do for me was to learn to accept me for exactly who I am, and focus on improving quality of life as best they could. And because of her lived experience as an autistic woman, she was able to impart better knowledge to us than all the other medical professionals put together. It was this step—connecting with another autistic person who had first-hand experience of what being autistic was like—that resulted in a bigger, much more profound improvement in my life than years spent with neurotypical professionals.

Many years later, as an adult, I came to realize that I needed to be able to emotionally process everything that happened to me. I needed to find a better understanding for myself in terms of what it means to be autistic, based on my own experiences—not based on what the "experts" see from the outside. I knew the only way to do this was to find other autistic voices to compare notes with. It started out by finding books written by autistic authors like Loud Hands, finding the Autistic Self Advocacy Network, and eventually making my way onto online autistic communities through Twitter.

I have found solace and comfort within our autistic community. I found other autistic people with common experiences and understanding of what it really means to be autistic… and I found people with substantially different experiences and understandings, too. I found a place where my interests aren’t looked down on.

This is a place where autism isn’t described in clinical terms with symptoms and conditions and treatment plans and other pathologizing things. Instead, we are a community of self-advocates who are fighting hard to claim our place as the real experts of what it means to be autistic. As the real experts of autism, we are in a better position to help others recognize their own autistic identities, and we’re in a better position to support them as they figure out what that means to them. In doing this, we are shifting away from a pathologizing clinical narrative that describes us as broken, and moving towards one that allows us to celebrate who we are and recognize our own strengths and our own needs.

Self diagnosis, at its core, is all about recognizing our own neurodivergence and reclaiming our role as the experts in our own lives. Understandably, there are limitations to what we can do with a self diagnosis. We cannot write our own prescriptions for medication, and we would not qualify for the kind of public assistance that requires a formal diagnosis. Self diagnosis does, however, give us better access to that autistic community support I was talking about earlier. It strengthens our network with other people who have shared experiences with us. Self-diagnosed people can access tips on what to expect from those of us who have gone through the formal process, weigh the costs and benefits of a formal diagnosis, and decide whether or not to pursue one in the first place.

Despite all this, there is a movement to restrict autistic community to those who receive a formal diagnosis, and this becomes a problem for a number of different reasons. First, so many of us don’t even know to pursue a formal diagnosis until we recognize in ourselves that we might be autistic, or others start to point things out to us. The process of self-discovery then takes time, and it only stands to benefit when people around us believe that we probably are actually autistic.

Yes, ultimately some of us will come to realize that they are not really autistic, but the exploration still helps them find answers about themselves, and no one is harmed in the process. However, when we deny someone’s autistic identity, we shut them out of the whole process, deny them access to the tools they need to better access the health care system, and potentially deny them their formal diagnosis altogether.

When we deny the validity of self diagnosis, we fail to recognize how broken health care systems can be. We effectively restrict our support to those privileged to afford a formal diagnosis. We ignore the fact that doctors notoriously ignore the needs of patients who aren’t white cisgender males. We pretend that autistic people of color are seen as potential threats who are sent into the juvenile justice system, and not seen as neurodivergent students with accommodation needs that are being unfulfilled. And worst of all, when autistic people find themselves neglected, ignored, and belittled by the very professionals who are supposed to be supporting them, they are neglected, ignored, and belittled by their neurosiblings as well. This cannot be allowed to happen.

As we continue to claim our rightful place in leading conversations and crafting policies about autism, we need to remember that self diagnosis is one of our strongest assets. We need to remember our own process of self-discovery and everything that we struggled with along the way. We need to ensure that future generations of autistic people do not have to suffer through the things we suffered through, because it’s the right thing to do.

Friday, April 26, 2019

Running Away: Autism and Elopement

#vscocam run away child!
Photo © Gonsalo Gomes | Creative Commons / Flickr
[image: Sepia-toned photo of a small child with short dark hair,
seen from behind, running.]

Marie Porter
www.celebrationgeneration.com

In an effort to raise a bit more “AutismAwareness,” I’d like to discuss “elopement.” I invite other autistics to add in their own experiences in the comments—this could be educational! But as far as what I’m about to say, I’m really just speaking to my own experience and thoughts.

First, I’d like to say that “elopement” is a ridiculous term. Right up there with “differently abled,” IMHO. It’s running away. It’s wandering. Call it what it is!

Secondly—and this is in response to an "autism warrior mom" who recently came at me to defend ABA—no one “dies from elopement,” just like no one dies from “running away.” Yes, there are all kinds of ways that one can meet their end running away, but those would be the cause of death—drowning, starvation, hypothermia, murder, etc. I don’t know why “died from elopement” rubs me the wrong way, but it does.

Now that my pedantry is out of the way, I’d like to discuss autistic running and wandering. It’s been really upsetting to see how it’s discussed among allistic (non-autistic) parents of autistics. I feel like there’s this idea that we just mindlessly wander, or run without intention, or that there’s no thought at all involved.

I’m sure that idea is a comfort to warrior parents but—at least in my case—that’s not accurate.

I ran to get away. Plain and simple.

Living with parents who are awful, unaccommodating, without empathy, who are abusive—verbally, physically, emotionally—is bad for anyone. I’m not discounting the awfulness of abuse when it happens to allistic kids.

But picture being alone. You aren’t like your own family, and everyone—even family—treats you like an outsider. You don’t relate to your “peers” at school, are constantly bullied, etc.… and on top of that, those closest to you are awful to you. Home feels like such an unsafe space, that even school—bullies, noise, crowds, and all—feels like a little bit of respite.

That is the reality I lived, and that’s the reality that so many of my autistic friends lived.

So when I ran, it was to get away.

I had many thoughts on this: Maybe a nice family would find and rescue me. Maybe I’d find my “real” parents (I often wondered if I’d been switched at birth, being that different from everyone I was related to). Maybe I’d get arrested, and somehow that would lead to a better life. Maybe I’d get kidnapped, maybe even worse; but anything would have been better than what I was living.

I had thoughts like that at least as early as six or seven years old—as far as I can remember. It may even have been earlier.

On a less… dark… note, I also did my share of “wandering” at school, usually at recess. Our recess area was a playground and fields, bordered with sidewalk—and we were not to go beyond that sidewalk. I did, and I did so knowingly, because that sidewalk represented a clear delineation between utter chaos, and peace. Beyond that sidewalk was a few meters of lightly wooded area, ending in fencing, separating the school area from the homes beyond it. I would sit among the trees, playing with leaves, and generally enjoying the solitude and quiet.

In the winter time, I’d hang out in the space between the snow drifts and that fencing, usually making a fort-type area. I’d carve seating out of the snow, and again… just enjoy the solitude. Sometimes I’d miss hearing the buzzer, of course, but I really needed that mental health break. Sometimes, that fifteen minutes, twice a day, was the only peace and quiet I had access to. It really made a difference!

As I got older—about eleven years old—I did more wandering. I enjoyed it, and I would purposefully try to get lost, almost as a challenge. I loved getting on my bike and just randomly turning down streets, eventually ending up on the far side of the city. It was fun. It was exploring, it was learning new things, seeing new sights, and it was being 100% in control of my environment.

I could go somewhere more quiet if I liked, I could head in areas with fewer people if I liked, and I didn’t have anyone telling me how broken I was. It was peaceful. I enjoyed having that peace.

Running, wandering... it was always conscious, and with purpose. It was escaping a bad environment, and that rings true for others I know. Maybe it wasn’t full-out abuse, maybe it was just being in a situation that was too noisy, or too bright, or whatever… but many/most of those I know who ran… it was to get away from something, or someone.

In my experience with autism warrior parents, they don’t want to hear this, because it contradicts their victimization narrative. They take it as an attack on them, rather than as a valuable source of information that they can learn from. They don’t want to consider the possibility that they are what the kid is running away from, whether personally, or as a matter of the overall environment provided.

They would rather buy a leash and subject the kid to ABA, than to invest time in investigating what could possibly be inspiring their kid to run. It could literally be as simple as their TV and/or lights emitting a high pitched noise that is intolerable. Maybe the cleaning solution used on the floors in the house just smells super noxious. Either can definitely inspire an autistic to run.

Imagine being put through 40 hours a week of abusive compliance therapy, because your parents didn’t want to change the types of lightbulb in the house!

In this sense, running and wandering are very much like many of the “negative” aspects of autism that parents want to “therapy” out of a kid, rather than address the underlying issue. Maybe it’s banging their heads. Maybe it’s another stim. Maybe it’s something verbal, like yelling—these are all signals that something is wrong. They’re all communication.

Compliance therapy isn’t going to make that lightbulb or that cleaning solution any less painful to deal with, it’s just going to make that kid bottle it up.

Cutting off a major means of communication doesn’t do anything good for the person being “silenced,” whether literally or figuratively silenced.

The completely wild thing, to me, is that the concept of running and wandering to get away from something shouldn’t be foreign to many people. You take vacations to get away from work. You go to the gym to get away from stress. You leave toxic friendships, and…I’m sure there’s some sort of sensory equivalent, but to be honest, the amount of sensory hell that is acceptable to allistics is completely beyond my comprehension. I’m sure some must like, leave restaurants that are too loud, or…?

Anyway.

I guess what I really want parents to take away from this is that anything your autistic child is doing that is annoying or distressing to you… is because something is annoying or distressing to them. You can take that as a personal slight, or you can take that as inspiration to make the environment better for your child.

Personally, I hope you go with the latter, as it will make things better for everyone.

Fin.

Thursday, April 11, 2019

A Conversation About Autism and Neurodiversity with Steve Silberman and John Marble

Steve Silberman, Shannon Rosa, and John Marble
[image: Three adult white nerds, posing together and smiling.]

Shannon Des Roches Rosa
Senior Editor

A large, friendly, and neurodiverse crowd came together at Square headquarters in San Francisco last night, to hear Steve Silberman and John Marble in conversation about autism and neurodiversity. The event was organized by by TPGA contributor Chris Williams and TPGA friend Chris Ereneta, Square employees both.

We live-tweeted both the witty, empathy-filled conversation and the useful Q and A afterwards, but as tweet streams can be hard for some people to parse, here's a streamlined text (and typos-fixed) version:

Steve is talking about the origins of his book NeuroTribes, how in the early aughts, before he began his research, he thought autism was rare. And how the conspiracy theories about causation were really running rampant. He wrote his classic Wired article The Geek Syndrome in 2001, talking about how some autistic people were finding refuge in the Tech industries of Silicon Valley—and would often have autistic offspring. Steve got weekly emails about his Wired article on autism for 10 years, and during that time noticed that the media emphasis on autism was skewed—people were arguing about vaccines, instead of focusing on the day-to-day needs of autistic people and their families.

There was a book in the 80s by a marriage and family therapist, called “Silicon Valley Syndrome” that appeared before the Asperger’s diagnosis was even part of the DSM, and Aspergians were even recognized as existing en masse. But they obviously existed and were definitely not getting the support they needed. Steve said the author could have changed the title to "Asperger Syndrome" without changing a word of the book itself. So people with autistic trait have been building Silicon Valley and the industries around it for decades. This is a place where autistic traits and talents can be appreciated.

John, who is 42, said that most people his age did not have diagnoses as kids. But he was lucky in that he grew up in a small town, and educated with the same cohort of kids, who knew him.

A few years ago, while working in the Obama administration, John was trying to figure out what was going on with him; he thought he was having episodes of being “deaf” but was actually having sensory overwhelm that was shutting down that sensory channel.

John initially resisted his autism diagnosis. Then a friend introduced him to Ari Ne'eman, and said maybe Ari could help him. Ari and John had coffee, but Ari intentionally asked to meet in a super-busy Starbucks. When John got overwhelmed, Ari suggested moving to his quiet office, and then they talked about the autistic reasons for what John was experiencing.

John says that getting an adult diagnosis is still really difficult. It’s mostly not covered by insurance, and private pay can be $5K+. Ari advised John to go to an autistic meetup. And he met his peeps and got to ask them about What. Autistic. People. Do. Which was revelatory. And then John went to an all-autistic retreat, and got to meet all sorts of autistic people—with ID, Down syndrome, AAC users, and more, and realized that autistic people are diverse, but share commonalities. The same was that French people are diverse but all understand French.

Steve says that Ari Ne'eman helped him too, by encouraging him to go to Autreat and see autistic people on their own turf (rather than in the previous stress bomb NT environs he was used to witnessing autistic people coping in) before he started his #NeuroTribes research in earnest. At Autreat, Steve had so many of his assumptions about autistic people exploded into dust. Like about having a sense of humor, e.g., when Ari was greeted by another autistic person with, “We love you Ari — if we were capable of feeling such an emotion!" At Autreat, everyone was so accepted and encouraged to do their own thing, that Steve found re-emerging into the NT world toxic and overwhelming.

(John mentioned the he was actually a member of the Obama administration before Ari, who was feted as the first actually autistic Presidential appointee; John just wasn’t out as autistic then. :) )

John on the absurdity of the “no humor” stereotype for #autistic people: How could that be true, when no one can even get tickets to autistic comedian Hannah Gadsby’s sold out shows?

John on the social vs. medical model approaches: Social means the difficulties disabled/autistic people experience are imposed by society. Medical model is deficit-based (what is wrong with the person). [We think life is mostly social model, but also disability is real, so.]

John also asserts that everyone stims! For autistic people having their stims suppressed is like an non-autistic person being at a rad dance concert and not being allowed to move their bodies at all.

John is name-checking AASCEND, a local group for autistic people and parents which has a monthly TV show. But whenever he was at a gathering the socializing changed the moment the non-autistic people left. Code switching for autistic people is a thing just like in any other non-majority group.

When Steve started looking at autism and autistic culture, he was able to identify with the cultural/outsider/marginalized/identity aspects because of growing up Gay when homosexuality was still part of the DSM.

ohn found it easier to come out as autistic because he’d already gone through the process of coming out as gay—he had a template.

Steve wants to know what John things companies who want to do right by autistic people/employees need to do.

John: Acceptance and accommodation. Most of the managers he consults with worry about how to retain their employees. Acceptance and accommodation is how.

John: Autistic people are EVERYWHERE. So the more we can educate people about autism and accept autistic people as a different type of normal, that’s what will make the difference. And we need to stop forcing autistic kids to fit into non-autistic roles.

Steve: We need to redirect autism research. Currently 32% of research is genetics and only 2% is only lifespan/QoL issues. That is messed up.

Steve: And we STILL don’t know how many autistic adults exist in the US, because we’ve never had a comprehensive prevalence study. So all those people who need support are not getting it. We do know that the UK did a study, and the kid/adult #autism prevalence was identical. So when people talk about autism “epidemics” or “tsunamis” that is not only completely wrong, but it ignores all the undiagnosed autistic people who are struggling to get by with supports and accommodations.

Steve: And we have to broaden our perception of what autistic people can do, because they are not all tech geeks. Many have no interest in working at places like Square.

John: Not. All. Autistic. People. Are. White. Men. That’s just the stereotype. Autistic people are as diverse as the rest of the population. And the increasing autism prevalence rates in the US mean we’re getting better at recognizing people, not that there’s an autism “epidemic."

Steve: As part of his research. he realized the reason autism prevalence rates are lowest among Hispanic families in Florida is lack of access to health care, not due to lack of autism prevalence.

Steve: John, if you could reinvent the world to accommodate autistic people, what would you do?

John: Center autistic people in autism conversations, policy, curriculum, and organizations. This is why most autism tech is junk; autistic people weren’t consulted. [He] is done with autistic people being excluded from autism conversations. This has real-world effects, because we need solutions and autistic people largely aren’t involved in working towards them.

John is passionate about connecting autistic adults with parents of autistic kids. He wants to buy all the parents a big box of wine. And he feels like a translator between the two groups.

John is talking about how he and my son Leo are examples of autistic people who look very different superficially, in terms of traits, but who are actually really similar in so many autistic ways. They are very same same and enjoy hanging together. It’s delightful.

Steve: While not all autistic people will be able to support themselves, we need to communicate to all autistic people that they can have a great future.

When Steve spoke at UN world autism day, he met a guy who was diagnosed with autism at age 70. Steve asked him what people thought he was before his diagnosis. His answer? “An engineer."

John likes to show parents autistic ppl who are successful, but also wants to be honest about the current challenges are. But he sincerely believes that all autistic people could probably have better supports than they have now. Society needs to change its priorities for autism.

John had always made his own accommodations while working at the White House, until he hit a wall. He asked his boss for an one, though worried he would lose his security clearance, get fired, etc...

mentions His boss’s response? “That’s fantastic.”

Why? He needed people who saw things differently, had different perspectives, solved problems differently. It changed John’s life, and he started leaning into being autistic.

John: The problem for most autistic people who are seeking jobs is the employment/interview process. It’s not autism-friendly. The culture needs to change. Because the skills needed to succeed in a job often have nothing to do with autistic interviewability. This is why John started @PivotDiversity, to change the culture of Silicon Valley, tech, and other industries to accommodate autistic and neurodiverse potential employees. Because until that happens, everyone is losing out on opportunities.

John: Autistic people are not down for exclusion and often walk off panels when there isn’t sufficient representation.

Now Chris Williams is speaking. When he was hired at Square, he had just been diagnosed as autistic, and disclosed during the process. It was astounding for him to be hired under those circumstances. And then at the office Chris W. ran into co-worker Chris Ereneta, who was wearing a neurodiversity tee. Chris W. saw his brain on someone else's shirt! And they connected about their neurodiverse families. Plus it was the first time anyone had told Chris W. he didn’t need to apologize for the way he communicated, which was revelatory.

(And then the entire room erupted in applause for Chris W.!)

An audience member asked about DSM changes. Steve: Important to note that the DSM 5 is the first time autistic adults had input on the autism diagnostic criteria.

Steve: People ask him which orgs to support since Autism Speaks is not good (euphemism), and he tends to recommend the Autistic Self Advocacy Network (as do we).

John: Professionals need to learn from autistic people, because most of them don’t really know much about autism (esp. doctors/therapists) and so helping autistic people is going to be really challenging under those circumstances.

Steve: Only 2% of the autism research outlay is on lifespan/QoL because the mainstream approach to autism is all about pathology. And so we keep overlooking autistic people who don’t fit typically-perceived autism molds.

John: A lot of autistic people don’t like Autism Speaks because they spend less than 2% of their budget on Lifespan/Quality of Life supports for autistic people and their families. But we have to have empathy for parents who listen to the mainstream narrative bc it dominates and it’s hard to find good information [which is why TPGA exists, in large part.]

John and Steve: The most important thing for parents who want to help their autistic kids, especially post-diagnosis, is to find autistic-informed resources. (Like our guide After an Autism Diagnosis: 13 Necessary Next Steps For Parents.)

Monday, April 1, 2019

Review: Autism: A New Introduction to Psychological Theory and Current Debate

Finn Gardiner
expectedly.org

 [image: The cover of the book Autism: A New Introduction to Psychological
Theory and Current Debate
, featuring a grid of small illustrations, interrupted
by an orange rectangle in the center-top. Large white text on the rectangle reads,
"Autism".  Smaller light orange text below that reads, "A New Introduction to
Psychological Theory and Current Debate."] 
Introduction

Written from the perspective of British autism researchers with expertise in both theoretical and practical aspects of autism, Sue Fletcher-Watson and Francesca Happé’s Autism: A New Introduction to Psychological Theory and Current Debate is a brief, readable volume about clinical constructions of autism, autistic people’s lived experiences, and philosophical debates about how autism should be approached by professionals and advocates.

While the book is technically a reissue—the original was written back in 1995—the content has been entirely revised to reflect current research, policy, and advocacy. In particular, the authors have made a conscious effort to include autistic people throughout the writing process, including sections written by autistic advocates after every chapter. Fletcher-Watson and Happé do not focus solely on the inclusion of autistic people within society at large; they also discuss the ways in which autism intersects with other forms of marginalisation or oppression, including LGBTQ identity and race. While autism and intersectionality are not the specific focus of the book, it is still relieving to see the authors address autism, and disability more generally, within a framework that takes into account our complex, multilayered lives. This was particularly heartening for me to see, since I myself live at the intersection of autism, queerness and blackness that sometimes causes me to feel isolated from the general population. Far too often, researchers treat autism as an atomised phenomenon that is utterly deracinated from the rest of people’s lives, even though absolutely nobody has a single-issue life, autistic or not. People are complex and have lives that are entwined with others’ complexities.

Contents 

The authors start with a summary of historical constructions of autism, primarily those of Hans Asperger, Leo Kanner, Uta Frith, and Lorna Wing. They then juxtapose these historical models of autism with more recent ones created by autistic advocates like Jim Sinclair, who reconceptualise autism as a disability under the social model, rather than a deficit inherent to the individual that the medical model often promotes. After these historical summaries, Fletcher-Watson and Happé detail current scientific research about biological and behavioural representations of autism, including prevalence, diagnoses, lifespan development, and neuroscientific findings.

When they transition from facts to hypothetical constructs, Fletcher-Watson and Happé describe what makes a good theory: concrete predictions, causality, interpretations of the evidence, explanations of the patterns of characteristics among autistic people, alignment with empirical science, and input from autistic people ourselves throughout the process. Afterwards, they introduce “primary deficit” models of autism and their offshoots: interpretations of autism that see it as wholly negative and suggest a singular cause for the constellation of autistic traits. Fletcher-Watson and Happé focus primarily on the Theory of Mind model, including Simon Baron-Cohen’s empathising/systemising construct, in which autistic people have a core difficulty with perceiving others’ states of mind. Similar deficit models include the idea of “weak central coherence,” or autistic people’s difficulty generalising from specific instances.

The authors are careful to mention that these deficit-centric theories have shown to be inconclusive in empirical research and have been repeatedly called into question by autistic people. They explicitly note that Baron-Cohen’s idea that autistic people exhibit “reduced empathy” is a harmful, dehumanising idea that “betrays a significant lack of empathy on the part of the non-autistic observer” (Fletcher-Watson & Happé, 2019, p. 130). Fletcher-Watson and Happé counter these deficit-centric models with explanations that treat autism as a complex combination of advantages and disadvantages. For example, developmental trajectory models propose that autism arises through atypical development over the lifespan, similar to that of the value-neutral “asynchronous development” model used in gifted-education circles.

The authors conclude by noting that no one cognitive, social, or experiential model can fully capture the differences between autistic and non-autistic people, that evidence-based interventions should be focused on quality of life, rather than “curing” autistic people, and that researchers should take into account the societal impact of autism research when conducting studies.

Coda

Fletcher-Watson and Happé have provided a strong antidote to the gloom-and-doom, causation- and normalisation-focused autism research field in this roughly 200-page volume. The difference between this book and other academic autism books also reflects significant cultural differences in international autism-research priorities. As researchers based in the United Kingdom, Fletcher-Watson and Happé exemplify the massive gulf between British approaches to clinical autism research and their American counterparts. While some researchers in the US have started moving towards incorporating autistic people’s voices, focusing on quality of life, and drawing on the social model, most of them still adhere strictly to a deficit model of autism that focuses on causation and treatment.

For example, the recent Assessment of Autism Spectrum Disorder: Critical Issues in Clinical, Forensic, and School Settings  (Kroncke et al, 2016) and the Essential Clinical Guide to Understanding and Treating Autism (Volkmar & Wiesner, 2017), both written or edited by American autism researchers, use a traditional deficit model that does not incorporate the views of autistic people. Some of these authors are so disconnected from our community that they claim that we generally prefer “people with autism,” and that “autistic” is an outdated term. If they had included autistic voices or read articles by autistic people at any point in their research, it’s less likely that they would make such a statement. This false claim is a reflection of epistemic injustice against autistic people, or the idea that we’re less credible because of who we are. Autism, on the other hand, weaves the insights and experiences of autistic people throughout the book. While it is not perfect—no book is—the difference between this book and the other two I mentioned is easy to appreciate.

American autism researchers should abandon the “not invented here” syndrome and draw from international literature on autism that places our voices at the forefront. Fletcher-Watson and Happé have provided this groundwork through their thoughtful, even-handed treatment of autism, its theoretical constructions, and autistic people’s experiences.