FYI: Autistic Women and Autistic Writers Exist, and They Might Even Be Modified by Adjectives Such As “Successful” Rather Than “Egocentric” or “Mindblind”

I’ve been going through old computer files lately, and I realized that I never posted the paper I read at the Feminism(s) and Rhetoric(s) conference that took place at Michigan State this past October (the week before our protest of the Autism Speaks walk, actually). So, here it is — my essay.


“Melanie,” she writes, and I imagine her doing so in an armchair, a red velvet armchair, this woman enunciating each syllable of my name, if only to make sure I comprehend her—“I hope as we go forward, Melanie, I hope you come to understand that at many levels what does and does not apply to you”—I stop reading, grind my teeth, poke my tongue in a developing cavity, if only to make my wince more wince-worthy—and continue on with her letter. “It’s not meant to personally challenge you,” she blathers, “but are the observations and ways of those with very different life experiences. Other people have different life experiences than you, Melanie, but I understand how difficult it is for you to put yourself in others’ shoes.”

I stop reading. It is difficult for me to fit into others’ shoes. My feet are incredibly narrow size nines, and I often fall out of my shoes—my shoes. And then there was toddlerhood, me walking so feverishly and insistently on tiptoes, my mother recalls, that the doctors considered cerebral palsy! (with an exclamation point) and hurriedly put my legs in casts below the knees, then braces, only to find out that it wasn’t cerebral palsy, that it wasn’t a symptom of anything with a legally recognized name, at least not anything legally recognized in the U.S. until 1995, at least not a symptom of anything other than Melanie being Melanie and what the hell is wrong with Melanie? There are empaths, and then there are dis-empaths—and as a teenager I was pegged into that escapably inescapable designation, that of the autism spectrum disorder, the one that, if you believe the charities, creeps into your child’s room at night and steals her soul, steals her ability to walk flat-footed, steals her ability, as the blathering woman in the imaginary red velvet armchair put it, to recognize that “other people have different life experiences.”

So much of my childhood was a search for an explanation—a search carried out by my parents, pastors, teachers, counselors, and the elementary school kids who liked to beat me up at recess. One day it’s selective mutism, and the next day it’s all my mother’s fault. One day it’s “let’s get a CATSCAN and make sure she doesn’t have a brain tumor,” and the next day my guidance counselor asks if my father has ever touched me. (And me, being ever the literal-minded autistic, says “yes”—is it illegal for fathers to touch their kids?) Once the Asperger’s autism designation descended from the diagnostic heavens, my capacity to empathize was suddenly eaten up by malfunctioning neurons. My capacity to engage in social relations or maintain eye contact vaporized alongside my personality. My capacity to have capacity was called into question. All these discourses, all these incapacities. Discourse about autism, I think, is far more virulent than autism.

In fact, discourse about autism has reached critical mass. Media outlets harp about the so-called epidemic, likening autism to a fate worse than pediatric AIDS, cancer, and diabetes combined. As of this past week, the autism rate has changed from 1 out of 150 people to 1% of the total population—1 out of 91. Not only this, but autism is said to affect mostly boys, the new statistics reflecting an incidence of autism in 1 out of 58 boys. These days, when I read and hear the numbers, when freshmen at my university tell the campus newspaper that these numbers are “so alarming,” alarming enough for them to fear procreation—I think to Lennard Davis’ work on disability and normalcy, specifically, when he describes the entire field of statistics as eugenics. Davis notes, “Statistics is bound up with eugenics because the central insight of statistics is the idea that a population can be normed. An important consequence of the idea of the norm is that it divides the total population into standard and non-standard subpopulations. The next step in conceiving of the population as norm and non-norm is for the state to attempt to norm the nonstandard—the aim of eugenics” (6).

When I am a number—a gendered number at that, and I mean gendered number both literally and figuratively, because I’ve synaesthetically thought of numbers as being gendered since I was a kid—but… when I am a number, I’m a number to be avoided. A number meant to instill fear and alarm. A number meant to warn parents that I could happen to them. A number that signals the dissolution of marriages and other gratuitous disability-induced horrors. A number that borrows its soundtrack from that classic, repeated knife-stab move in slasher flicks. I can see and feel the numbers as eugenics—all too visually, all too tangibly.

But the fraughtness of autism discourse neither starts nor ends with numbers—it involves our very conceptions of autism and its overlaps with gender, involves that tired misconception of autism precluding empathy, emotion, and personhood. Kidnapper imagery abounds in PSAs and billboards; popular nonprofits mourn the loss of the children that never were. And as reprehensible as these mass-mediated representations are, perhaps more concerning to me (out of my own autism-induced self-centeredness?) (I pose that question snarkily) are the professional discourses that affect me, us, you, them—any and all of us who hold some connection to the amorphous numbers. For as much as we’d like to dismiss the autism-as-thief trope as the next of the myths du jour, such myths find their realities in the various professional discourses that surround autism and the numbers and the gender and empathy issues. In medical discourse, autism is disempathy. It is, as psychologist Simon Baron-Cohen notes, a case of the “extreme male brain” (3). According to Baron-Cohen, autistic people are logicians and systematizers—characteristics in supposed contrast to femininity and empathy and social skills. Autistic neurology is so phallic as to penetrate unsuspecting female minds and make male any and every idiosyncrasy. Scholars in the mood for retro-diagnosis take delight in postulating Emily Dickinson was autistic, or that idiosyncratic fictional characters such as Jane Eyre were autistic. While certainly the autism rate remains higher for boys at a 4 to 1 ratio, the key characteristic for all autistics, per Baron-Cohen, is neurological maleness—such that autistic girls and women become doubly disabled: first by a merciless soul-stealer, and then by a chronic gender-reassigner.

I think to all the ways in which I am distinctly feminine, or distinctly unfeminine—or, conversely, more than a matter of mere is, the ways in which my supposed unfemininity is constructed as such, is rendered a symptom of my supposedly more-male-than-female neurology. The letter from the imaginary-armchair woman—the letter where she claims that I lack understanding of experiences outside my own, of minds outside my own. Or the first time I went to a school dance, where I went up to the DJ and requested the Electric Light Orchestra, to which he replied that he didn’t have any Electric Light Orchestra; so then I began requesting bands who sounded like the Electric Light Orchestra, such as Kansas or the Moody Blues, or Jefferson Starship or Styx—and I kept reciting band after band after band until he yelled at me, over the sounds of 90s grunge, to get the hell out of his face. Or, at this dance, when I grew stiff to the touch, to any touch, and while my female classmates discussed boys and shampoo tips and kitten posters, I wanted to talk about how many top-40 songs ELO had in a four-year period, or recite the list of all of their songs in alphabetical order, or rehearse the band members’ birthdates.

But, as alien as I may seem to describe myself, as rhetorically unaware as my sixth-grade self may seem—I’d posit that the disempathy here, this rhetorical construction of the autist as disempath, is ableist. That is, any assumption about lack of audience awareness by default makes an ableist assumption about who an audience comprises—an audience filled with non-autistic people, or parents, or professionals, or statisticians? Are autistic people considered to lack such capacity that they cannot form and function as their own audience?

Perhaps my delving into rhetoric, writing, and the troubling of audience seems a stark shift in tone here. But as a writer and an autistic and a woman, it doesn’t seem this way to me. The transition seems so natural, not stark, and I’m not even sure that I need a transition, that I need to create some turn-around phrase or some three-point thesis statement that outlines the whole of what I’m saying, what I’m writing. And for this, a compositionist who likes all things neon and 80s might pull out her copy of Linda Flower and start droning on about reader-based prose and cognitive immaturity, what Ann Jurecic referred to as egocentricity in her 2007 article in College English, called “Neurodiversity.” Jurecic’s piece is what I’d label the trademark autism piece in the field of rhetoric and composition, at least, it’s certainly the most well-known, is one of the first if not the first, and it’s so normatively organized, with lots of transitions and other so-called readerly cues. As Ann Jurecic labels autistic writer and scientist Temple Grandin as mindblind, I can’t help but wonder about my own signposting or lack thereof in the essay I read now, how things make so much sense to me but may very well make no sense to you, as if my words here float and crumble, a style begging for an analogy to my strained ways of making and maintaining eye contact. I think to Jurecic’s comparison of Grandin’s edited and published book versus Grandin’s unpublished essays on her web site—a comparison Jurecic uses to argue that Grandin very much lacks audience awareness, that any semblance of organization is likely attributable to heavy editing on someone else’s part. Jurecic writes, “Grandin, of course, is not a college writer; she is a professor whose job requires her to write frequently and well. Her writing is ‘autistic’ in large part because, even after she has written six books and dozens of articles, she still cannot consistently define a line of argument, guide a reader from one point to the next, or supply background for references that will otherwise be unclear” (429).

I should here note that I haven’t hired anyone to do heavy editing on this essay—as much as I may have needed it. I haven’t run this essay by an advisor or committee member. I haven’t visited the writing center, nor have I discussed potential revision strategies with a disability services counselor. I’ve only shared it with the mirror, reading off words in my own eye contact-less, male-but-not-really-male-brained way.

What strikes me about Jurecic is her reliance on Baron-Cohen, who has also researched and written quite prolifically about autism and mindblindness—that is, the supposed inability to imagine the mental states of others. Despite autism’s postulated male, logical influence, she describes the essaying of autistic writers as having an “unfamiliar logic that is challenging to follow” (43). She also notes of autistic writers that, “Clearly, an inability or limited ability to theorize other minds, as with egocentrism or limited empathy, would make communication a challenge” (426). And here I stop and revisit an earlier point, perhaps in my own desperate attempt to mimic good essay conventions, perhaps in my own frenzied manner of transitioning from point A to point Q. Such a stance, that of grounding autistic ways of knowing and expressing in terms of unfamiliarity, inability, challenges, mindblindness, disempathy, limitations, and other items mired in deficit—such a stance leads me to think that some of these autism PSAs need to be revised, to inform parents that autism steals a person’s ability, as I here unfairly quote Jurecic, to “define a line of argument, guide a reader from one point to the next, or supply background for references that will otherwise be unclear” (430). It scares me that scholars and peers in my field have taken a Baron-Cohen turn. It scares me that my peers and professors and students might perceive my ways of knowing, being, and expressing as misfiring neurons, as disempathetic illogicalities. Such deficit-laden rhetoric makes little to no room for theories of neurological difference, makes no room for disability studies, where societal barriers are more disabling than any form of bodily difference.

As Susan Wendell writes, “We need a feminist theory of disability…Disability is not a biological given; like gender, it is socially constructed from a biological reality. Our culture idealizes the body and demands that we control it” (260). I need only think to Tony Atwood to see the relevance of Wendell and other disability theorists—not to mention feminist theorists—to grasp how unquestioned matters of biology go in matters of disability because, as Simi Linton notes, disability is so often conceived of as that “atypical experience of deficit and loss” (5). Attwood, arguably the most well-known Asperger’s specialist in the world, has recently taken to writing about the under-diagnosis of autism in girls and women. He describes such girls as being able to “pass” more fluidly in day-to-day life because they possess certain positive, womanly qualities—unlike the stereotyped representations of the screaming, aggressive autistic boy, autistic girls are more likely to be quiet and “passive” (3). Attwood also contends that neurologically typical girls are more likely to be “maternal” and take autistic girls under their wings and help with social skills (5).

What I find most pertinent about Attwood to this discussion, however, is his embrace of Baron-Cohen’s concept of the extreme male brain. While discussing how autistic individuals have obsessions, or what he terms “special interests,” Attwood maintains that most autistic girls have “typical” girl interests such as kittens or unicorns—but the unrelenting intensity and rigidity of their interests (that is, the detached and weirdly logical male expression of their interests) is what sets them apart (5). A “typical” girl submits her dolls to mock social situations such as dating or going to the mall. An autistic girl lines her dolls up in alphabetical order, or by height or type, and sits in her room for seven hours while observing the flaws and curves of Barbie’s plastic figure.

Where to go with all this—this assumption that autistic people are inherently lacking something, this assumption that autistic women are somehow less than women because of their neurological wiring, this assumption that autistic writers lack audience awareness, when, in reality, autistic people are excluded from most every audience one could even think of, so what practice would we have anyway in imagining the mental states of others when everyone else so wrongly presumes to know our own mental states?

I think to autistic writer Jane Meyerding, who identifies her autistic self as genderless. She writes, “My intellect makes me a feminist. But my gut, my feelings, my self-awareness remain stubbornly and radically un-gendered—at least in the terms of the culture that surrounds me” (157). And: “When people perceive me as aloof, they are sensing an absence of emotional availability. It’s unwomanly of me, in traditional terms, to be the way I am. In feminist terms, it’s un-sisterly. I just have to accept that, for this autistic, it’s normal” (169).

I’d like to think that feminist approaches to disability—that is, any approach that considers social and cultural constructions of difference, rather than neurological imperatives—would not render the autistic woman as un-sisterly or unwomanly. I’d like to think that I could call myself autistic and not be considered unempathetic or mindblind, as lacking in some core feminine trait (as if there exists a checklist of core feminine traits). I’d like not to get letters from mothers of autistic children that patronize me and my approach to the world, and I’d like not to think of such mothers as occupying red velvet armchairs, because the kitschy image of red velvet alone makes me want to gag. I’d like to think that autism organizations at my university and in my city wouldn’t present autistic individuals as lacking humanity, as having a condition that has taken something intrinsic away. I’d like to think that, as my title suggests, autistic women and autistic writers not only exist in space and time, but also exist in categories that are not centered around deficit, loss, and mystery.


Who can speak in the autism conversation?
This is the question I keep returning to.

Frequently, when I suggest that autism doesn’t need a cure — or that many autistics don’t want a cure — I’m greeted with the following retort: “You shouldn’t be cured. You’re high-functioning.”

Ah, yes. I’m a high-functioning autistic. As a result, unless I agree with Autism Speaks’ video manifesto, I don’t count.

There are some huge problems with this high-functioning/low-functioning binary. Namely, it’s a medical construct, and, as such, both sides of the binary are frequently used to suit the purposes of people who aren’t autistic. We don’t have a stable definition of what high-functioning is, again, because it’s a social construct: if one is able to speak, is she high-functioning? If one is able to attend college, is she high-functioning? If one is able to make eye contact, is she high-functioning? If one can speak but can’t work, can cook but can’t drive, can read existential philosophy but can’t add single digits, can hug on demand but can’t stop a head-banging binge, can mimic smalltalk but can’t modulate the volume of her voice, can pass in short bursts but can’t refrain from hand-flapping, is she high-functioning?

I’ve been told that I not only seem to have high-functioning autism, but high-functioning high-functioning autism, as if my new aim should be for threesies — high-functioning high-functioning high-functioning autism. How wonderfully echolalic. (If I say this three times out loud, do I have to move back two steps?)

The Autistic Bitch from Hell wrote about the problematics of the HFA/LFA divide in a 2006 blog entry. She suggested that if we take any other marginalized group and insert “high-functioning” as an adjective, wars ensue. The examples she presents are as follows:

“She is a high functioning woman; unlike most women, she can live independently.”

“He is high functioning for a black man; he can keep a job.”

When people say, “Wow! You’re smart for someone with Asperger’s,” I never know whether I should 1) smile meekly, or 2) punch them in the face. I usually go with gut feeling #1 because I’m polite for a person with Asperger’s. (As if rudeness were one of the DSM IV criteria for Asperger’s.) </sarcasm>

Why all this compare and contrast? Why one extreme or the other? Why shove diverse individuals into either/or categories? In essence, functioning level involves the extent to which an autistic’s personality traits match up with the expectations of particular neurotypicals. When others denote me as a high-functioning autistic, there’s still an assumption that I’m malfunctioning, because no matter how “high” I am on the grid, I’m never just plain functioning. And when autistics are coined as low-functioning, the assumptions made involve malfunctioning on warp overdrive. If we’re ever going to remove autism from the funk of puzzlehood, then we need to stop with these malfunctioning robot allusions. It’s as though we’re labeling some autistics as gaming PCs with a few missing processor chips, and we’re labeling other autistics as ribbonless, keyless, cordless typewriters circa 1883. HFA and LFA are attempts to technologize autism — and not positively, either. Like many an aspie, I love my computer, but I certainly don’t empathize with it.

So, by this warped HFA/LFA logic, if I’m the hottest PC from Best Buy who happens to be short a few RAM sticks (and also happens to have a processor from, say, the 1990s stone age), then how can I claim that 1883 typewriters don’t want a technological upgrade? I mean, sure, I’ve got a few screws loose myself, and even though I’m slow and sometimes emit weird smoke or freeze with the blue screen of death, I’m an otherwise quirky machine who generally gets the job done. I’m worlds away from that horribly damaged typewriter.

This machine metaphor is horrid and inaccurate, but it’s the mental picture I have when I hear people discuss autistics and functioning. And it perpetuates division upon division, stereotype upon stereotype.

It saddens me that some of the more prominent writers in the autistic community — Donna Williams, Temple Grandin, Thomas McKean — take this approach. Donna Williams, author of Nobody Nowhere and several other books, often writes of her world before language and uses this language-less distinction to separate the auties from the aspies. And though I don’t discount the diversity of the autism spectrum, and nor do I discount the fact that Williams’ autistic experiences are different from my own, I don’t see the utility of an aspie/autie or HFA/LFA division. I also have to wonder if what Williams describes as a language-less realm is interpreted as, indeed, languageless by other so-called LFA auties: the person who immediately comes to mind is Amanda Baggs.

Of course, I don’t want to re-define or question Williams’ experience. I can’t pretend to know her past and present worlds. I do wonder, though, how it is we’re defining language when it comes down to the LFA/HFA divide — because, certainly, not speaking or not understanding verbal speech shouldn’t render one languageless. (What about hand gestures, or repetitive movements, or grunts and moans? What about sign language? What about typing? What about FC? What about self-injury?)

Additionally, I don’t think that this so-called language barrier between aspies and auties should define how we advocate as a community, nor should it split us into two opposing communities. According to the DSM IV, all autistics, by medical definition, have “impaired” language/communication, whether verbal or non-verbal.

This binary brings me to an article, Who Can Call Themselves Autistic? Here, the authors respond to Thomas McKean’s 2006 “A Danger in Speaking.” McKean writes of the autism conference circuit, denouncing speakers who have self-diagnosed as autistic and also casting suspicion on those who were officially diagnosed in adulthood. McKean reasons that the self-diagnosed and the adult-diagnosed have little to no place in the conversations surrounding autism. Although McKean poses some valid concerns about self-diagnosis (after all, we don’t want autism to become a teenage internet fad), what he doesn’t acknowledge are the obstacles certain autistics face in obtaining diagnostic testing. Those who are “high-functioning” adults have typically been misdiagnosed with disorders that never fit, or have been institutionalized or wrongly medicated because the “autism” of 1993 wasn’t the “autism” of 1994. Moreover, insurance companies rarely cover autism-related expenses. Testing can cost anywhere from $600 to $5000, depending on where one lives. Additionally, both age and gender complicate autism diagnosis: adults learn to compensate for their autistic “oddities,” and women often present as “milder” cases. Additionally, very few specialists are equipped to deal with autism diagnosis, some even believing that only emotionless, monotoned boys age seven or younger can be diagnosed with Asperger’s.

In short, McKean claims that self- and adult-diagnosed autistics haven’t “suffered” like he has, yet he ignores the fact that these autistics have “suffered” in ways that he hasn’t. Moreover, in Asperger Syndrome Employment Workbook, authors Meyer and Attwood maintain that official diagnosis should never be imposed upon autistics: rather, those who do not wish the stigma of a medical label can accurately claim autism if their self-diagnosis is “peer-confirmed”:

Every AS person deals with diagnosis and disclosure issues in a unique way. If you are self-diagnosed, your diagnosis should be validated through the comments of other adults with AS. This is called ‘self-diagnosis, peer-confirmed.’ Many self-diagnosed AS adults refrain from diagnosis for as many reasons as there are individuals. (33)

The self-diagnosis debate isn’t something that I’d like to get into any further, though I do offer the argument that any person who identifies as autistic is also self-diagnosed, whether officially diagnosed or not. I see self-diagnosis as self-identification and official diagnosis as being identified. (And, yes, in case people are wondering, I’ve been officially diagnosed, unofficially diagnosed, self-diagnosed, misdiagnosed, and peer-confirmed — and not in that order. How many hoops must one jump through to really be autistic? Or maybe the real hoop is the “cure” hoop?)

McKean’s logic, as described by the auties and aspies at, is this: if you don’t want a cure for autism, then you need to prove that you’re autistic, because it’s 99% certain that you’re not really, truly autistic.

Questioning someone’s diagnosis is part-and-parcel with the HFA/LFA binary. These designations fail to account for the spectrum that is autism, a non-linear spectrum, at that. And, of course, if we truly want to dismantle this “functionalization” of autistics, what do we say to those autistics who do the opposite, the ones who claim that autistics who want cures or hate autism aren’t “real” autistics? Writes McKean,

What you do not have a right to do is to claim that a cure is wrong for everyone. Until you have met everyone with autism in the world, until you have gotten to know them, you simply cannot make a blanket statement like this.

My response to this, which is always evolving, causes me to wonder if it’s actually cure that such people are after. The dialogue that GRASP tried to start with Autism Speaks on the cure debate is one such illustration of the cure confusion. When autistics reference cure, do they desire to become entirely new people, the sort of brain-transplant cure that neurodiverse activists decry? Or, do they mean societal acceptance, or accommodations, or reduction of one “symptom” such as sensory overload, or medical treatment? Because if autism truly is what modern science describes it to be — genetic, neurological, and brain-based — then, indeed, a cure for autism would involve major brain rewiring or prenatal testing and abortion.

I have more to say, but this post is too long. So I’ll stop, muse some more, and come back to this.