Oh, the #Autistic Humanity… of Neurotypical Rejection of Autism’s Resident Experts

Hindenburg explosion
Hindenburg explosion

I’m taking a break from my data collection and analysis to speak to just a few things about a 2013 paper I read recently — Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind by University of Michigan. I saw people tweeting about it on Twitter, and since I’m always “up” for a tasty piece of academic writing, I jumped into the feed and asked for details. I got them. Link to the article. 

Holy smokes! Now that’s something I can relate to. There were so many pertinent and prescient passages — four years before this date, Yergeau talks about issues that are still very much a part of my own reality. They’re “gating factors” — blockers — and they still persist, for some reason. Especially that business about “Theory of Mind” (ToM), which I’d love to avoid mentioning, as it’s a huge trigger for me, but I can’t omit. So, I’ll just have to deal with everything that comes up, in the interest of intellectual exploration.

The point that practically leaped off the page and might as well have grabbed me by the hair and given it a big tug (I find pulling my hair to be soothing, actually), was in the abstract (emphasis is mine):

Abstract

This essay is an autie-ethnographic narrative that traces the problems with and limits of theory of mind (ToM) as it is currently constructed in psychology and cognitive studies. In particular, I examine the role of the body in ToM—or rather, the ways in which autistic people are disembodied in theories about ToM. I argue that theories about ToM deny autistic people agency by calling into question their very humanity and, in doing so, wreak violence on autistic bodies. I suggest, furthermore, that feminist rhetorical studies represent one potential location for dismantling the complex web of oppression that ToM has come to signify.

Now, I’m not a huge fan of feminist studies, actually. Adherents to the discipline have used it against me, many times. I’ve been on the receiving end of unfavorable personal critiques assessments by a number of feminist scholars who didn’t give me time to explain the reasons behind my beliefs and actions. Personally, I “land” in a very phenomenological corner of the think-o-sphere, and I’m wary of using academic theories as guiding principles in approaching living, breathing people. But that aspect aside, I enjoyed this piece so very much.

Here, let me explain why.

I’ve long felt that the whole autism discussion is weirdly skewed in a way that excludes autistic folks by design. Go online, and there are all manner of people making very odd claims about what autism is and how it should be handled. A whole lot of non-autistic people are making some pretty, ummm  … “interesting” claims and observations, which directly or indirectly affect their own (autistic) children, siblings and other family members, as well as plenty of other autistic folks outside their sphere if immediate influence. But when an autistic adult shows up to add some actual personal experience to the conversation, things can turn ugly. Or … crickets. There’s lots of talking “about us without us”, and it just sucks.

Along that same vein, a few months ago, I watched a video by a certain Dr. Grinker, who posited that autism is a cultural construct and eventually we’ll get to a point where it’s no longer seen as “a thing”. He also said in the video that anyone should feel free to reach out to him, as he’s easy to find. So, I did just that and emailed him some of my thoughts about how growing up in a very autistic family, in a very autistic corner of the world, has showed me that even if you’re in the midst of conditions which are actively shaped by and for autistics (to the point where neurotypical norms are “strange”), you can still experience a lot of difficulties as an autistic person — and autism doesn’t cease to exist.

I invited him to a discussion about these ideas, citing my background in cultural anthropology, as well as my half-a-century’s worth of experience in the autistic experience.

His response? Crickets. Nothing.

Okay, so maybe he got busy. Maybe he never got the email. Maybe he’s got better things to do, and I shouldn’t extrapolate from that one instance, that he’s blocking me and totally not open to hearing from an #ActuallyAutistic person about his latest theory.

But his non-response is really an apt summary of so many of my interactions with folks peripherally active in autism (as in, they’re not autistic, they just seem to think they’re qualified to talk about it). And this sort of thing happens with alarming regularity in the online world. Parents or siblings or spouses of autistic individuals lay bare their struggles, and when a real-live autistic person steps in to offer some perspective that might (I dunno) help(?), they’re either dismissed or even attacked.

That’s fairly inexplicable to me. I mean, I just don’t get it. Why would you exclude, attack, and alienate the very people who are best qualified to speak to a particular subject? I mean, we’re right here, in all our autistic glory, with tons of insight and experience just waiting to be tapped. A lot of us have got encyclopedic knowledge of our own situations, with more detail than even we know what to do with. We can be like NASA collecting data — we have so much of it, we sometimes can’t even begin to start sorting it. But we do have it. And we’re eager to share. Yet, we’re pushed to the side, and research and conversations march on without us.

Yeah, I just don’t get that at all.

Then again, I do get it. Autism discussions often take place within the context of social sciences — psychology in particular — and being a former social scientists myself (my academic training was in cultural anthropology), I’m all too familiar with the habit of treating subjects of study like, well, subjects of study. When I was learning about how to conduct ethnographic research, I was cautioned against getting emotionally involved in the people I was talking to. I was supposed to keep my distance. I was supposed to remain impartial. I was supposed to be a scientist. To personally relate to the subjects of my study as people, would be compromising the tenuous status of social sciences as actual science. To be taken seriously by the biologists, chemists, physicists, medical folks, we had to maintain our standards. The moment I made a personal connection with people I was interviewing or analyzing, was the moment I put the quality of my research at risk.

And we couldn’t have that.

That’s actually part of the reason I left cultural anthropology / ethnology. That kind of distance just wasn’t genuinely possible. Not for me, not for anybody. It all felt so contrived, so forced, so in-human. I believe, based on my own observations, that it’s impossible for any of us to interact with others and not be personally affected / involved. Humans are not built that way, and pretending otherwise just seemed like a big ole exercise in but-we’re-really-a-science! hubris.

As I was reading Professor Yergeau’s paper, something “clicked” again with me — articulated in a way I’d been vaguely / visuo-spatially thinking for quite some time.

Non-autistics don’t listen to Autistics, because to them, we do not exist. We cannot exist. We are not even human.

By definition, according to ToM, we are lacking the most fundamental elements of humanity — the ability to read others’ minds and experience empathy.

Sidebar: I could go on in detail about how some autistic folks are actually hyper-empathetic, even empathic — empathic meaning you co-experience others’ cognitive-physio-emotional states, while empathetic denotes the ability to simulate others’ states of mind/emotion — an important distinction that often gets lost. But if I did that, it’s just be the intellectual equivalent of a circle-jerk comparison of penis sizes, to see who’s the most dominant male, so I’m not getting into that.)

In fact, lack of ToM is considered a core defining element of autism. So, at our core, we are fundamentally less than human. We are in-human. From the piece (bold emphasis is mine).

In one such imagining, David Smith (2007, 172) suggests that, without a ToM,You would be unable to understand the meaning of human behavior and would perceive people as hunks of flesh moving mindlessly through space.” In other words, in addition to the “empirical fact” that autistic people signify the boundaries of the human, we are asked to believe that autistics perceive other people as mindless bags of skin. This, then, is the dilemma that ToM poses: How can one defend her own humanity if she does not recognize the humanity of others?

We cannot truly relate to others as people, rather as scripted, echolalic automatons who fumble at connecting with the neurotypical bags of skin surrounding us.

How indeed can we defend our humanity? Can we even have a concept of humanity? If you’re autistic, and autistics are by definition required to lack ToM (well, 80% anyway, since SBC’s own research showed 20% of studied autistic subjects actually exhibited ToM – though they were later – conveniently – shown to only have it “at the lowest levels”)… then it makes no sense at all for non-autistics to engage with us, to listen to us, to take us seriously.

We have been shut out of the conversation by people who for some reason have a lot of investment in doing so. I can think of a ton of different reasons why that could be so, but whatever the reason, the fact remains that our very humanity has been constrained — not by our nature, but by the criteria that are used to measure that humanity.

So, basically, any other tests of competency — for inclusion — for respect — are pointless. Meaningless. Moot. We can write and theorize and compose and dance and sing and act and invent and create till the world is full of our creations (and it is), but we can’t actually participate in conversations about us, because, well, we’re not quite human. And the fundamental value of our creations is perpetually suspect — regardless of the objective benefits they provide — because they were created by people who are, at their core, lacking one of the most fundamental elements of humanity.

Maybe we already are living in a world kept running by robots — and we’re the robots. According to some.

Let me paraphrase the following

As a [writer], I am supposed to understand autism as a limit case, one that signifies everything that rhetoric is not. I am supposed to understand that autism is the antithesis of narrative. As a [blogger], I am supposed to understand that autism prevents me from being a [narrator].

The cognitive studies articles that [pack my bookshelves and lie stacked around my desk] detail the ways in which my people are not really people. I apprehend them with the lenses that I know . . .  philosophical, narratological—I think them all echolalic. Autistics are not people. Autistics are not people. How can a non-person assert her personhood? Autistics are not people.

And so, I am getting used to not existing. I am getting used to having a body that is not really a body. I am getting used to the [theoretical] violence that theories about theory of mind enable. Tie me to a gurney. The gurney is more material than I am.

I have to say, I’m not sure I’ll ever get used to not existing. Some of the key differences I seem to have from Prof. Yergeau is that I don’t have a lot of “co-morbid conditions” attached to me. I’ve had my mental health struggles, but it’s not part of my ongoing sense of who I am. I don’t identify consistently as a disabled person. I have aspects of my life that can be temporarily disabling, but it’s all so mutable, so changeable, that I have many days (usually when I’m alone) that are free of any sense of disability at all.

Even so, this piece articulates so well the sense I have of what the rest of the world thinks of me: Autistics are not people. I am not a person, by conventional clinical standards. And if I identify as autistic in the larger world, I invariably subordinate myself to those who rely on convention and clinical assessment to define who matters, who lives, who dies. I cannot help but do so, because while the dominant paradigm is fundamentally flawed and chock-full of injustice, it is the dominant paradigm. And society needs its rules, its regulations, its collective agreements, in order to function. Just because I disagree with it, doesn’t mean it doesn’t have power.

The ways in which I disagree with ToM number too many to count at this time. And the number is always changing, the longer I think about it — which is as seldom as possible, to be honest. Perhaps my main point of contention, is that it bases the very definition of “humanity” on a function of the mind — which doesn’t seem to leave much room for the body. As an autistic individual living in an autistic body, I can tell you with absolute certainty that the body plays a huge role in autism. It cannot be divorced from my mind. It is informed by my mind’s processing of meaning, just as it shapes my mind’s ability to process the world around me.

ToM doesn’t seem to make room for that at all. Where is the discussion about the environmental conditions under which autistic kids were tested? Where is the disclosure about the process that led up to their testing? Where is the data about their emotional or physical states at that time? Putting an anxious autistic kid (whose emotions you can’t read because you don’t think they have any) in a brightly lit room that may be full of scents and unfamiliar sensations, demanding that they perform tasks without any explanation of why they should be doing them… well, that hardly seems like a reliable way to collect data on individuals who may be severely impacted by issues beyond their control — which aren’t even on the proverbial radar of researchers.

To put it another way, that’s like asking a neurotypical to drive home safely along the foggy Pacific Coast Highway, at 3 a.m. after getting no sleep for three days prior, and chugging a six-pack of PBR tallboys in the last hour. Maybe they get there, maybe they don’t. But you don’t judge their ability to drive in general, based on those conditions.

You don’t give an English-only-speaking person a verbal IQ test in Catalan, and judge their intelligence on the results.

That’s just stupid.

And yet, that’s pretty much what’s happened with this whole ToM business. The underlying data are flawed. The collection methodology is suspect. The assumptions drawn are … I’m running out of words. And yet, it’s used as the basis for determining our humanity. How much we count. Whether we count at all.

If there were ever a way for an inadequately equipped mob to tamp down the freedoms and possibilities of others, ToM fits the bill nicely.

So, all this being said, what the hell am I going to do about it? 

Well… there’s not much I can do to reverse the pseudo-intellectual micro-industry that’s coagulated around ToM, but I can certainly counter with my own individual methods. I can provide ample written – documented – evidence that I am, in fact, a human being who is deeply feeling (probably too deeply feeling) and more than able to connect with others (so long as they’re not lying to me, trying to take advantage, or being mean-spirited sacks of sh*t).

I’m not going to live my life centered on ToM, striving at every turn to prove it wrong. That would give it too much power. Instead, I’m doing the exact opposite —  living my life without referencing it at all. I’m also not going to waste my time on people and institutions that ascribe to it. That means, divesting from the mainstream in many ways — not pursuing academic degrees at mainstream universities, not seeking publication from mainstream publishers, not engaging with any of them directly or getting caught up in back-and-forth with people who think me somehow “less than” because of being Autistic.

And I am certainly not going to go demonstrate against people who wish me ill because I’m not like them. I have a lot to do. I’m not giving any of them my precious time, which is far more productively and enjoyably spent elsewhere.

There are plenty of #ActuallyAutistic (and autistically-allied) folks out there with whom I’d much rather interact, whose works I’d rather read, view, and discuss. Autistic culture is on the rise, and we certainly have the means to develop our own scholarship, our own art, our own literature. And I want to put my energy towards developing that, not rearranging my chair on the deck of the mainstream Titanic, so I get a better view of the iceberg field around us.

I’m a woman. I’m queer. I’m neuroqueer. I’m intermittently disabled. And there is so much joy and bliss in the reserves of my soul. All the ToM folks can take their toys and go play in their own little echo chamber. I’ve got a life to live and things to accomplish. If they want to stop by and see what a real-live Autistic Human Being is up to, I’m not hard to find.

But I seriously doubt they’ll come looking.

Their loss.

Their

loss.

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4 thoughts on “Oh, the #Autistic Humanity… of Neurotypical Rejection of Autism’s Resident Experts

  1. “Autistic culture is on the rise, and we certainly have the means to develop our own scholarship, our own art, our own literature.”

    I actually shouted “WOO!” at this point 🙂

    Liked by 1 person

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