Study: 1 in 40 Autistic People Surprised You’re Surprised That 1 in 40 People are Autistic

A study announcing that the autism rate among children has risen to 1 in 40, higher than the 1 in 58 previously estimated by the CDC, is making headlines. Despite the fact that the study authors themselves admitted they were not surprised (a South Korean study put the number at 1 in 38), we’re seeing the usual uptick in “crisis” rhetoric, along with the usual new spate of bizarre woo-based memes.

fancy-chicken-close-up
Chicken Little.

Since leaving activism several months ago, I’ve scarcely kept up with autism news and I’ve commented on autism-related subjects even less. This one, however, stands out to me because of its parallels with a Quora A2A I received a few days ago: “Have you ever shared a bathroom with a transwoman [sic] and what happened?”

The answer to this question is, of course, “I have been in a public bathroom with a trans person before and so have you, and neither of us probably realized it at the time.” Trans people make up 0.6 to 1 percent of the U.S. population, after all. That’s about two million people. Evenly divided by state (which the population overall is not, so neither are trans people), that’s 40,000 trans people per state, or an entire Big Ten university.

The response to the Chicken Littles scurrying in response to the study results is the same: “Autistic people have always made up about 2.5 percent of the population, you just didn’t realize it before now.” That’s about 8 million autistic people, or about 160,000 per state – a midsize metropolitan area.

Natural redheads, incidentally, also make up about 2 percent of the U.S. population. Have you met more than one natural redhead in your life? Statistically, you’ve met that many autistic people as well.

Of course, this answer seems to placate no one. In fact, it most often appears to entrench the speaker further in their anxiety that Things Are Getting Worse All The Time.

Granted, “things have actually been as bad as you think for a while now” isn’t exactly comfort food. For someone whose anxiety is driven by a sense of lost control, “it’s been out of control” doesn’t help and can actually make the anxiety worse.

And questions like “why are all the kids turning autistic?!” or “are there trans people in our bathrooms?!” are very much about a sense of lost control. Autistic people and trans people are seen as threats because of their status as Other. When more of those scary Others start to pop up, many people experience a sense of disturbance to their internal order, their sense of how things should be: Men are men, women are women, everyone communicates in a certain way, and all is right with the world.

Reminders that the world has never actually been that way aren’t great. In fact, they’re kinda horrible.

Of course, not everyone reacts to new information in this fashion. Research indicates that our brains can be structured in ways that correlate with our willingness to embrace difference (and with our political views). The concept of fixed vs. growth mindset explores similar differences from another angle.

For the less-fixed types, “Autistic/trans folks have always been in your life” actually can be comforting. Oh, the world isn’t changing at all; it’s always been like this, and I’ve done just fine so far. For those more comfortable with embracing ambiguity and difference, this statement may even be delivered with an edge of annoyance: We’re here, we’re (neuro)queer, please get used to it so we can stop teaching 101-level classes about how we do in fact exist.

But how do we get past the Chickens Little, for whom “hey, we’ve always been here” is a reason to avoid the 101 classroom instead of entering it? I don’t know. I just know that a lot of our modern anxieties aren’t as diverse as we think.

 

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I Want to Believe (In Myself): The X-Files, Star Trek, and (More Than) Autistic Special Interests

There’s a post at Chavisory’s Notebook today that I recommend you read before reading this, because context.  Also so I don’t have to repeat it.  Picture it cut and pasted in this space (except with more citing and less plagiarism).

I was obsessed with The X-Files as a teenager.  Obsessed enough that, unlike any of my prior so-called “special interests,” my family actually knew about this one* and, to a certain extent, supported it.**  Enough that I actually made a couple friends, the first friends my own age I’d had since elementary school, based on our shared interest in the show.

But even to my friends and family, I concealed the depth of my absorption.  I didn’t really understand it myself.  It lasted from a few weeks after the series’ premiere (“Ice,” actually) until just after the first movie- the second-longest-running special interest I’d had until that time.  The first one was Star Trek.

Watching the new episodes has been hard for me.  For one thing, they’re intensely triggering.  It took me three and a half weeks after they began running to convince myself to watch them at all – merely thinking about The X-Files was stirring up all kinds of amorphous emotional crap I thought I had resolved in my teen years but had in fact simply left behind.  Watching the new episodes themselves stirred up more amorphous emotional crap.

I almost didn’t watch “Home Again” at all.  I’m tired, tired of having spent the entire past week in a PTSD fog, tired of trying to figure out how it is that I’ve rewatched all of The Next Generation and Voyager since my teen years without my PTSD making a peep, tired of carrying, always carrying, this trauma.  I can forget about it at times but I cannot put it down.

But of course, the scariest questions are the ones that most need an answer.  And the answer to this one – why Star Trek still excites me to the point that I literally taught a class about the Borg in Voyager last year but why The X-Files is an emotional minefield – is becoming a way in for me to start to unravel the trauma of my teenage years.

I didn’t have the word “trauma” when I started watching The X-Files.  In fact, I didn’t have any words at all for what was happening to me – for what it’s like to go through puberty, without friends, with a mother who insists you pull a perfect Elsa, while autistic but without the word “autistic.”  If I’d had words like “trauma” or “autistic,” I don’t think I could have accepted them.  Not on my own; not without help.  And the help I would have needed to accept them would itself have greatly reduced the trauma.

The words I had were words like weird.  Wrong.  Secretly insane – literally; I believed for a long time that I had what my parents’ 1970s psych textbooks called “childhood schizophrenia”***.  Crazy.  And, yes, spooky.

Both Star Trek and The X-Files stick with me because each of them gave me a vocabulary for who and what I was, at a time in my life when I desperately needed a vocabulary.  They are two very different shows; they generated two very different vocabularies.

Star Trek was (as it has always been) an aspirational vocabulary.  It gave me hope for a world run by and for the benefit of humans in which I, markedly “other,” could be accepted and valued nevertheless – valued for my otherness, even.  This, I think, is why I don’t find rewatching Star Trek triggering.  The Star Trek universe in general, and Deep Space Nine and Voyager in particular, are about places I could belong.  I don’t identify with Barclay but I get Barclay.

The vocabulary The X-Files gave me was more realistic.  The X-Files was, for me, a show about the dangers of being different and the impossibility of being anything else.  It was a show about my reality: about the obliviousness with which most people go through their lives until you scratch the surface of that life, and about the incredible risks that boil out when you do.

As a Facebook friend of mine recently pointed out, autism is not an invisible disability.  It shows in our movement, our behavior, our use of language in various ways.  Difference frightens the human brain, especially when it is close enough to be “just like us” but…not quite.  Freud’s word for it was “unheimlich,” or uncanny.  Star Trek made aliens just like us; The X-Files made them….not quite.

To be uncanny is dangerous.  And we know it.  This is why parents of autistic kids spend tens of thousands on therapies whose only goal is to make the kid appear less uncanny.  Those parents are terrified.  That terror is a survival mechanism.  It arises pre-conscious thought, and so its presence, itself, is not cause for judgment.  It’s what people do once that terror becomes conscious that is a cause for judgment.

Star Trek presumed that humans would “grow out” of that pre-conscious terror of the uncanny, essentially rendering it canny.  The X-Files disagrees.  It does not have a particularly optimistic view of how people will react when faced with the uncanny – or, indeed, how they will react when faced with the idea of the uncanny.  Sure, there are moments, like “Clyde Bruckman’s Final Repose” or Season 10’s “Mulder and Scully Meet the Were-Monster,” that can be remarkably accepting.  But this is largely a show about danger.

It’s also a show about the importance of being right – even when you are wrong.

The X-Files was my anti-ABA.  It taught me that one could get away with being weird or crazy or spooky, as long as one was, at least, not wrong for being so.  It taught me that “weird and crazy and spooky” and “wrong” are not synonyms – that there is a way to be right even while being uncanny.  It taught me that pursuing that sense of being right, even when it made me uncanny as hell, was good.  And it taught me that it was okay to believe that I was maybe not wrong even when the whole world was telling me I was.

That was my fascination with The X-Files, and with Mulder in particular.  I could sound completely crazy but maybe I was not wrong.  

It took over twenty years and four new episodes for that message to sink in.  Like Mulder, I wanted to believe.  But it was not the same thing as believing.

And maybe there would be someone – someone who wasn’t uncanny, who spoke the language that in my wrongness I didn’t speak, someone ordinarily human – who would back me up on this.

*(and still gives me shit about it, as if it were nothing but a garden-variety crush which of course had to have been on David Duchovny and could not possibly have been on Gillian Anderson – but I digress)

**By which I mean “they let me commandeer the VCR to tape episodes and rewatch them until the tapes wore out, and also bought me the show guides, several of the novels, and both “Songs in the Key of X” and the Mark Snow soundtrack,” and also “they did not actively try to stop me being interested.”  They would have said “Oh, The X-Files is her favorite TV show,” as if “favorite” could begin to adequately encompass what that show did for me.

***Turns out I was right: “childhood schizophrenia” was the diagnosis given to a great many people in the mid-twentieth century who actually had – you guessed it – autism.

Emotional Labor, Gender, and the Erasure of Autistic Women

This post was originally published at Autistic Academic.

Yesterday, I stumbled across a listicle at My Aspergers Child, titled “Married to an Aspie: 25 Tips for Spouses.”  As you might expect from a title containing the word “Aspie” and the improbable number “25,” this list was terrible (and did not, in fact, contain 25 tips).  Emma and I unpacked several of its varied problematic assumptions here; I spoofed it on Field Notes on Allistics here, and The Digital Hyperlexic did some more unpacking here.

What I’d like to do now is to discuss the intersection of gender, assumptions about emotional labor, and the erasure or overlooking of autistic women that results.  This is a topic I’ve discussed more than once on this blog in various ways, although I’ve never quite gotten to the heart of the emotional labor question.

What is emotional labor?

Emotional labor is the work done to organize, remember, prioritize, sort, and structure daily lives and relationships.  In short, it’s the effort put into giving a fuck about other people’s thoughts, needs, and desires.  There’s an excellent introduction to emotional labor and the ways it manifests (as well as ways to do it) at Brute Reason here.

The problem with emotional labor, of course, is that generally speaking it is not considered “work” at all.  Rather, women in particular are expected to provide it “out of the goodness of our hearts.”  Emotional labor is actively cast as not-work by being cast instead as a natural urge women simply have – as if, rather than calling on women to generate effort, we’re actually doing them a favor by foisting the world’s give-a-fuck duties onto them.

In cishet relationships in particular, women are raised to, are generally expected to, and frequently end up doing a disproportionate amount of the emotional labor, as this massive MetaFilter thread on the topic attests.  (The days – literal days – it will take you to read the entire thread are wholly worthwhile.)  We cast emotional labor not only as “women’s work,” but as not even work.  Women who fail to put up with “affirmation, forbearance, consultation, pacifying, guidance, tutorial, weathering abuse,” as Jess Zimmerman sums up emotional labor (at the link in the above paragraph), are not only punished for it socially but are in a sense not considered women at all – and the enforcers of this, as N.I. Nicholson also points out (at the Digital Hyperlexic), are frequently other women.  Certainly, as Nicholson also points out, failing to do the emotional labor “correctly” is cast as social and romantic suicide: “no man will ever want you.”

What does this have to do with autism?

Consider, first, how autism in general and Asperger syndrome in particular are portrayed as deficits in emotional labor, specifically.  The DSM-IV criteria for Asperger Syndrome (which differ from the criteria for autism only in their willingness to allow for a broader range of features in speech development) specifically target certain differences, difficulties, or absences in expected displays of emotional labor:

  • marked impairments in the use of multiple nonverbal behaviors such as eye-to-eye gaze, facial expression, body posture, and gestures to regulate social interaction,
  • failure to develop peer relationships appropriate to developmental level,
  • a lack of spontaneous seeking to share enjoyment, interest or achievements with other people (e.g. by a lack of showing, bringing, or pointing out objects of interest to other people)
  • lack of social or emotional reciprocity.

The last criteria in this section, “lack of social or emotional reciprocity,” is a demand for emotional labor, full stop.  Emotional reciprocity is the one thing all forms of emotional labor have in common.  The other three are more specific examples of emotional labor: using nonverbals that make the other person feel noticed and attended to, energy invested in “appropriate” relationships, and “sharing” (the ambiguous construction “of interest to other people” in the list of examples, implying “of interest to the patient, pointed out to other people” and “of interest to the other person”, is particularly telling).

It is the lack of “appropriately” displayed emotional labor that leads researchers like Simon Baron-Cohen to cling to the notion of a “theory of mind” deficit in autism and similar developmental disorders.  In In a Different Key: The Story of Autism, authors Donvan and Zucker accuse ASAN founder Ari Ne’eman of “unmistakably” having autism and of possessing no Theory of Mind because, in a conversation with “autism parent” Liz Bell, Ne’eman expressed disagreement with Bell’s position on autism, but did not do the emotional labor of making that disagreement palatable to Bell.

And, of course, “25 Tips for Spouses,” many of which boil down to assumptions that the “Aspie” half of an Aspie-NT marriage is failing to do his (always his, according to “25 Tips”) fair share of the emotional labor, and that this is somehow autism’s fault:

3. Although he genuinely loves his spouse, the Aspie does not know how to show this in a practical way sometimes.
12. Because the Aspie does not have the same relational needs as the NT partner, he may be unable to recognize instinctively or to meet the emotional needs of his partner. Marriages can thus form some dysfunctional relationship patterns.
13. For NTs who had normal expectations of the mutuality of marriage, there may be a sense of betrayal and a feeling of being used and trapped while in a relationship with an Aspie.
15. In the privacy of their relationship, the NT partner may become physically and emotionally drained, working overtime to keep life on track for both of them.

18. NT partners may begin to feel that they are entirely defined by the role they fill for their Aspie partner. There can be a sense that there is little mutuality, equality and justice.
19. NT partners may feel that they are daily sacrificing their own sense of self to help fulfill the priorities of the Aspie partner.
20. NT partners may resent the reality of living on terms dictated by the needs and priorities of the Aspie partner.

Insofar as Asperger syndrome is understood as a deficit of emotional labor, these statements make a certain amount of sense.  But notice how “Aspie” and “man” are perpetually conflated – not only here, but in most dating guides for people with Asperger syndrome (as Emma and I have discussed in previous posts), and in the literature on so-called “Cassandra Syndrome.”  The overwhelming majority of people who claim “Cassandra Syndrome” are non-autistic women married to autistic men, and the fundamental claim is that the man in question has so terribly neglected the emotional labor of the marriage that it has caused actual trauma to the woman.

How Autistic Women Get Lost

Emotional labor is a demand we place primarily on women.  We expect men to do far less emotional labor than women; socially, we tend to punish men who do “too much” emotional labor as excessively “effeminate.”  We expect autistic people to do even less emotional labor – to the point of doing none at all – and we pathologize this lack of emotional labor-doing as both a tragedy and a fault.  Meanwhile, autistic girls and women get lost, both before and after diagnosis.

We know that girls and women don’t get diagnosed with autism as frequently as men and boys.  There have been a spate of articles in recent years on why this might be happening and how to address it.

One answer that has been floated in several circles is that we “miss” autistic girls and women in diagnosis because girls are taught and socialized, from birth, to perform emotional labor.  When the diagnostic criteria for autism spectrum disorder still emphasize deficits in emotional labor, clinicians are looking for lack – not for difference, which is more likely to appear in girls who have been socialized to perform emotional-labor rituals without being given any insight as to their meaning or purpose.

(This, by the way, has nothing to do with whether girls are “innately better” at emotional labor than boys.  It has everything to do with how both girls and boys are raised.  Girls are expected to at least make the effort; boys are not.  Girls, therefore, show up in clinicians’ offices making the effort; boys do not.  While no studies exist yet, I suspect that a study of boys who are raised in households that demand more emotional labor from them also “fly under the radar” of diagnosis more easily than boys who are raised without such demands.)

What of the girls and women who are diagnosed – who are, as I was, probed by clinicans until our difference in emotional labor’s performance becomes apparent?  Well, if you ask the authors of “25 Steps,” we don’t exist – or we don’t marry NTs, or our marriages are never affected by our autism.

(If this last one were true, one would expect a crusade to demand equal emotional labor from boys and men.  Emotional labor “cures” autism!  Except, of course, it does not.)

I’ve written about this question before.  Long story short, autistic girls and women are subjected to the continued demand, attached to our (actual or perceived) gender, to do the emotional labor, no matter what it is, and certainly no matter whether or not we have a developmental disability that specifically lists deficits in emotional labor ability in its diagnostic criteria.  What becomes a convenient scapegoat for men in emotional-labor-lopsided marriages (it’s not him, it’s his autism!) becomes a whiny excuse for women.

This is also why creepy male behavior is excusable with the reasoning “but he might be autistic!,” while curt female behavior is not.  His autism is a reason to pity and excuse his lack of emotional labor; our autism is no excuse to skip out on our expected over-share of the emotional labor.

And this is why there are no “25 Tips” for autistic women married to non-autistic men (like me).  I’m presumed not to need them.  As a woman, I’m presumed to have the (innate or trained) ability to do a disproportionately large share of the emotional labor, to absorb my husband’s disproportionately small share.  (It is also assumed that the shares are lopsided in exactly that way; no one asks how my husband and I have negotiated the emotional labor in our own marriage.)  It is presumed that he will never feel “betrayed,” “used,” or “trapped” by me and my autism, or that he will never need to turn to an Internet listicle for help if he does.  Because I’m a woman, and disproportionate unpaid emotional labor is my birthright.

Thus autistic girls and women get overlooked before diagnosis and erased after it.  Our cultural presumptions about who is able and equipped to do emotional labor make it easy to both diagnose and dismiss autistic men as “just like that,” while blaming and burdening autistic women with “doing it anyway.”  When autistic women don’t “do it anyway,” they’re de-feminized in countless ways.  It’s a lose-lose game.  Crone Island beckons.

Deconstructing “Active Listening”

A few weeks ago, “Whole Body Listening Larry” made the rounds of the autistic community:

Image: A green poster, featuring a cartoon image of a little boy on the left and a series of cartoon images of body parts on the right.  The poster is titled "Whole Body Listening!"  Its subhead reads "Larry wants to remind you to listen with your whole body."  The cartoon body parts are captioned, respectively, as follows: Eyes: "Look at the person talking to you." Ears: "Both ears ready to hear." Mouth: "Quiet - no talking, humming, or making sounds" Hands: "Quiet in lap, pockets or by your side." Feet: "Quiet on the floor." Body: "Faces the speaker." Brain: "Thinking about what is being said." Heart: "Caring about what the other person is saying."
Image: A green poster, featuring a cartoon image of a little boy on the left and a series of cartoon images of body parts on the right. The poster is titled “Whole Body Listening!” Its subhead reads “Larry wants to remind you to listen with your whole body.” The cartoon body parts are captioned, respectively, as follows:
Eyes: “Look at the person talking to you.”
Ears: “Both ears ready to hear.”
Mouth: “Quiet – no talking, humming, or making sounds”
Hands: “Quiet in lap, pockets or by your side.”
Feet: “Quiet on the floor.”
Body: “Faces the speaker.”
Brain: “Thinking about what is being said.”
Heart: “Caring about what the other person is saying.”

The discussion at the time centered on how Larry’s approach to listening is a neurotypical-centric one, and that, for many neurodivergent people (including autistic people), behaving in the way Larry describes actually prevents them from listening.  Larry, the argument went, forces autistic and other ND kids to make a tough choice: pretend to be listening but actually get nothing from the conversation, or listen but get reprimanded for not behaving in the prescribed way when they do?

As someone who has to make the choice whether to “listen” Larry’s way or to, you know, actually attend to and comprehend what the speaker is saying, I’m sympathetic to the pushback against this model.  But I’m also struck by how little of what we portray as “active listening” – what Larry demands – isn’t “listening” at all.  It’s speaking.

It’s not verbal speaking – Larry does ask us explicitly not to make mouthnoises.  But it’s communication all the same.  The body postures that Larry’s “whole body listening” demands are all concentrated on communicating to the “speaker” (here, the person making the mouthnoises) that their mouthnoises are the most important thing in the room.  Larry’s intended message isn’t about making himself, or you, a better listener – whatever that means.  It’s about reassuring the “speaker” that they have an audience by telling them that they have an audience.  The form of “listening” we prize most highly, Larry’s “whole body,” “active” form of listening, is at its core a form of speaking in service of reifying speaking.  “Listening,” in the sense of “attending to and comprehending the context, content, and format of someone else’s communications,” really has very little to do with it.

Larry’s instructions for listening might not be wholly useless.  In a world that prized and taught attending-and-comprehending communication on a par with issuing communication, there could easily be any number of people who did their best “listening” while adopting the body postures Larry advocates.  But that world would not seek to impose any particular set of gestures on its population, and speakers in that world would not require the reassurance of this particular set of gestures in response to their speech.  Instead, that world would allow for the fact that there are many ways of effectively “listening,” and not all of them desire or require this particular set of nonverbal signs in order to operate.

That’s not the world we currently live in, and that’s why the autistic community finds Larry problematic.  Larry becomes yet another way autistic children (and adults) are told to speak in a way that is unnatural to them or else.  But Larry also reveals how we subordinate listening to speaking not only by preferring speaking over listening, but by demanding that listening itself behave as a form of speaking.

The Social Model of Disability: A Rather Short and Very Simplified Introduction

I wrote this just now for a person on Facebook who asked for a shorter and simpler introduction to the social model of disability than Google offered.  Since I imagine it will be useful to more than just the person to whom I originally responded, I’m reposting it here.

Think of “disabled” or “disability” as a verb. A body/brain condition you have is a “disability” not because it exists or because it differs from body/brain conditions a lot of other people have, but because the world you live in is not set up, socially or otherwise, to let people with your body/brain condition access it easily.

The condition “itself” – say, like having chronic migraines or not having legs – is typically called an “impairment,” especially if the medical world has criteria for diagnosing it.  Impairments can come with their own non-social hardships.  Migraines, for example, can be very painful, cause difficulty thinking, nausea etc. But any body/mind condition, “impairment” or otherwise, is a “disability” only when the way society is structured is the reason you can’t do the things you want to do when you have it.

A rather simplified example: I have chronic migraines. I see the pain as an “impairment,” because no amount of social change will ever make the pain not suck for me. But whether or not I can hold a full-time job with my chronic migraines is a “disability,” because it depends on things like how work is structured in a particular society, what tools I have to do work in alternate ways during a migraine, etc.

My chronic migraines were a full-blown “disability” when I worked as a line editor, because there my employer refused to structure the job so I could do it during a migraine. In other words, I was “disabled” from doing that job by my employer’s rules about how the job “should” be done. But the migraines were less disabling when I was a lawyer or now, as a professor, because both those jobs are ones I can structure (and have structured) so I can do the work even during a migraine.  I can schedule work so that I’m working at home on migraine days; I can lower the lights in my office/classroom and give my students activities that don’t require the same kind of “on my toes” input from me; I can postpone grading for days when I don’t have a migraine; and I have someone else to double-check my writing to make sure it makes sense. In writing fiction, I find that my migraines are actually the opposite of “disabling”: I write *better* fiction when I have one than when I don’t. The migraines are still painful and nauseating, but now I’m “abled” to do my job because it is structured in a way that lets me access it even with the pain and nausea.

…This doesn’t, of course, address any of my reservations about the disability/impairment binary, regarding autism or otherwise.   But I hope it’s useful.