December 4, 2022

Autistic lives and legibility in research

Posted in Uncategorized tagged , , , at 1:13 pm by chavisory

Given the current uncertainty regarding the future viability of Twitter, I’ve started screen-capturing some of the threads I wrote there that I would most hate to lose and adapting them into easier-to-share blog posts. Here’s the first!

I volunteered doing social media work for an autistic-led organization for several years, and we would regularly be asked to share surveys or calls for participation in research, and my personal policy was to take every single survey (or ask a fellow moderator to, if I didn’t personally fit any part of the criteria, like being a parent) before sharing it with our community, to ensure that the goals of the research fell within our general values as an organization and not written in a way with a high potential to be offensive or hurtful. There were a lot of researchers trying to look at something worthwhile but whose surveys as written had issues that meant I didn’t feel like I could share them, and many were thankful for that feedback.

I’d say the far greater number of surveys, though, we did share. Efforts by researchers over the years to engage more meaningfully with autistic adults, including by autistic young adults and scholars entering the field who’ve grown up engaged with the neurodiversity and self-advocacy movements, initiatives like PARC and the #AutINSAR/AutIMFAR chats for helping to foster direct contact between interested researchers and the autistic community, and, I think, a growing acceptance that autism is in fact a lifelong condition, meant that over time I saw more studies looking at things like experiences of depression and anxiety, healthcare, employment issues, parenthood, and menopause.

But I would still often find them frustrating to take, for reasons that it took me a long time to articulate or to realize were probably not unique to me.

My aim here is not to rebuke students or researchers who are, in fact, listening to autistic people and looking in the right directions at the kinds of issues that impact our wellbeing and quality of life. In fact, the thread from which I’ve adapted this post was inspired by the fact that I’d recently seen and taken part in a lot of overall good and thoughtful research that had actually allowed me to see more specifically where I was having trouble or what I was finding frustrating in ways that were deeper or more specific than just that I thought the research was bad or poorly designed or entirely on the wrong track in its aims.

So here are some things I would like to tell autism researchers in general about surveys.

1. I am so tired of having to retake the AQ screening (or EQ, or both) as the entire first part of your survey.

It’s sexist, it was designed to affirm outdated stereotypes, its assumptions have been countered by newer and better research, it is long and easy to game. And because it was designed in the first place to confirm certain sets of beliefs about autistic people, it risks leading you to circular conclusions.

And frankly, I’ve already been diagnosed with autism, and it can feel like having that called into question again, and again, and again.

I very much understand the need for validation that study participants are autistic. But the AQ is such a flawed and onerous tool that unless what is under study is some aspect of the AQ test itself, I would really like to see its use as a gatekeeping device rethought.

2. So many problems could be solved by allowing multiple answers or “check all that apply” boxes on questions about self-identification.

There are categories for which I can choose a best-fit answer, and there are ones for which I cannot.

3. Relatedly, if you’re studying gender variance or gender non-conformity in autistic people, it must be possible to identify as GNC or genderqueer but not transgender.

I know that it’s become common and accepted to see the transgender umbrella as encompassing the whole range of gender experiences other than that of being uncomplicatedly cisgender. But some people do experience themselves as gender non-conforming, genderqueer, or genderfluid but not trans.

If you’re truly only looking to study experiences of trans autistic people, that’s an important and necessary area of inquiry.

But if you say you’re studying autistic gender non-conforming people but you’re really only asking about trans experiences, or you’re classifying any experience of gender variance as transgender experience, you’re going to risk missing nuance or outright misclassifying a certain number of people’s experiences.

According to common, present definitions of what it means to be cisgender vs. transgender, for instance, I literally cannot call myself either without lying in about three different ways. I’m not trans, but to call myself cis currently requires me to agree with things that either didn’t happen or that have nothing to do with my relationship to my body.

But I’m also not a woman in the same ways that, for instance, most straight, non-autistic women are. And I’ve had to back out of surveys when it became clear that they were going to classify my experiences as trans whether I actually did or not.

4. Questions about employment status need to allow for some truly, wildly, unconventional and fluid situations.

For instance, I spend some of my work life under union contracts, but not all. While a freelancer in some regards, I am mostly not actually self-employed. I have an average of six different employers per year, some of which are the same from year to year, but some of which are not.

In any given month, I probably have income from two to three different sources.

Whether I’m employed part-time or full-time, self-employed, or unemployed can change on a week-to-week or month-to-month basis. I have weeks when I work sixty hours and weeks when I work fifteen hours.

It’s very worth knowing what overhire and contingent work is. This is the kind of instability that many of us who do this kind of work—including a lot of arts workers—deal with. And I have reasons to believe that autistic people may be significantly over-represented in arts-related fields as well as other kinds of unstable and seasonal work.

(In all of your defense, let me just say that these are things I still have trouble getting people like federal judges to understand every single time I get called up for jury duty. What it means that I have multiple jobs, none of which ever have the same schedule from one week to the next, unless I’m on an AEA contract for a full production, and then that’s all I do for ten to twelve weeks. That I do not have a salaried job, or even an average weekly number of hours with a single employer who becomes obligated to keep paying me if I get called away for three to four weeks. That I can’t afford to just not work for that long. I had a long, frustrating interaction with a jury pool administrator once who kept telling me “But if you weren’t here, you’d be at work. So where would you be?” and I kept trying to explain “Yes, but I don’t know where, because I had to mark myself unavailable everywhere in order to even be here today.” There was no answer to that question she could understand.

My experiences with the court system as a potential juror actually played no small part in convincing me I probably needed to be assessed for autism.)

I think there’s also a higher likelihood of autistic people being engaged in under-the-table work, caretaking, or other informal or flexible work arrangements that may be hard to shoehorn into the way most survey questions on the topic are written, than tends to be accounted for. I think there’s a tendency to see autistic people, if we’re employed, as either being employed through some kind of placement or training program; or in mainstream, conventional employment with or without formal supports, and I suspect this may fail to account for the realities of people who are cobbling together a living in far more unconventional and marginal ways.

On so many questions about employment status, I have been just barely able to tell the truth, because none of the options presented truly describe my situation. Like, even “full time or part time” is a false dichotomy. And I’m not even in an especially strange situation. Lots of people, both autistic/disabled and not, have work lives like mine, which are just invisible to most people outside our specific communities. I suspect the fact that autistic people often have incredibly niche strengths may play into this as well.

And issues of employment instability lead me neatly to…

5. Healthcare and health insurance

Before the pandemic, I had never been insured for more than 18 consecutive months, at any point in my adult life.

While I technically had the same insurance for most of the years between, say, 2012-2020, I was in constant danger of losing eligibility for it every six to twelve months, depending on the number of weeks I’d worked on certain union contracts over the previous year.

(Yes, that’s as much of a blast as it sounds like it’d be. The cost-saving measures implemented by our health and pension fund since the onset of the pandemic have made it even worse—harder to earn eligibility to buy insurance, more expensive for lower-quality coverage, and harder to keep it.)

And I was taking a survey on disability and health care a few years ago that didn’t have an easy way of articulating that situation, but it’s one that, again, is very common to people in my field.

I paid penalties under the ACA most years until the individual mandate was struck down, because it was uncommon for me to be insured the entirety of a calendar year. (One year I didn’t, because while I’d been uninsured twice in the course of the year, it was for less than three months both times.)

Since the outbreak of the pandemic in 2020, I have managed to remain continuously insured through a patchwork of short-term bridge plans, relief programs, COBRA subsidies, and the intensive assistance of an experienced and dedicated ACA navigator, but I have therefore been on five different insurance plans since the fall of 2020.

You can’t really call that acceptable continuity of care.

6. So many of the things I need support with are less about needing autism-specific or even disability-specific services, and more about the fact that the world assumes to an outrageous degree that people over a certain age have a spouse or romantic partner.

And if you don’t, people don’t really know how to help or what to tell you.

I encountered this in the worst way while attempting to get exceedingly minor surgery. The surgery itself could be done under local anesthesia, only…they wanted to sedate me as well. And that would require that I have somebody to accompany me home.

If you don’t have a partner, if you don’t have family in the same city, if you have friends who would absolutely be willing to do this but have caregiving responsibilities themselves (or live in a different city), if your longtime roommate is out of town, if you don’t feel like you can ask a local friend to take a day off work which will entail them giving up income (see above) or possibly even finding and paying their own replacement only to feel jerked around when your surgery date gets rescheduled three times…who is that? Who is assumed to have some kind of obligation to be there for you?

Are single adults just not supposed to need certain kinds of healthcare?

I did have the surgery, without sedation, so that I’d be allowed to leave and go home by myself. Having to fight for this was hands down the worst part of the entire process. Not being awake for the actual surgery—that was kind of interesting. Not the pain, for which I took Advil, not the recovery process, not having limited use of my dominant hand, although that definitely also presents certain difficulties when you’re on your own. But having to try to make someone understand, over, and over, and over again, that there would be no one coming to get me, and so they needed to work with that.

The obligations of keeping a life together fall extra hard on me, not only because I have limitations other people don’t, but because I don’t have many of the same kinds of relationships and support structures that most people just tacitly have, and are widely assumed to have.

And in no way do I mean this to suggest that no one really needs individually-tailored services or that inadequate supports for people who need them in order to live in the community aren’t a problem; they are. This is just an example of how I think it’s assumed that inadequate support provision looks a certain way—and sometimes it does—but sometimes it looks a way that is much more complicated to check a box about.

(And I think there’s a lot more worth writing, and that has been written, about the particular burdens of bureaucratic fuckery on the lives of autistic and disabled people already getting by with insufficient support.)

This is not intended to be an exclusive or exhaustive list, but I hope it might be a useful and thought-provoking one. Again, I’m not aiming to be too harsh on researchers for just not knowing what they haven’t had any way of knowing, and I think one culprit is that we still just don’t know that much about what older and unidentified autistic people’s lives look like on the ground, outside of school/clinical/institutional contexts. For a lot of reasons that I’ve glanced off of before but that get hard to delve into in a post of this length. But I think we have a tendency to fall through a lot of categorical cracks, and I like to think there are ways our lives could start to be less illegible. Because I think we suffer a lot for that illegibility.

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  1. […] Autistic lives and legibility in research […]


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