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| 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
