blog rants – Page 13

Some thoughts on eye contact

I’ve been wearing eyeglasses since the age of eight. The narrative is a familiar one: I couldn’t see the chalkboard at school, walked into telephone poles, made head contact with dodge balls more often than usual. I remember my first trip to the optometrist, a small balding man with a penchant for incomprehensible soccer truisms, and I also remember him announcing that I had a birthmark in my left eye in addition to very high eye pressure, the latter a potential risk for glaucoma.

I never had a gradual adjustment period with my glasses — the doctor insisted that I could only remove them when I bathed, slept, and played soccer (and I didn’t play soccer, and wasn’t quite sure why he kept droning on and on about soccer). Once I started wearing the glasses — bright pink frames encasing mammoth lenses — colors grew darker, faces became less fuzzy, and I could see the contours of my hand again.

Shortly after I’d adjusted to re-seeing, my younger brother got ahold of my glasses and popped out one of the lenses. My mother hadn’t the time on this particular day to purchase an eyeglass repair kit, and suddenly, without my glasses, I couldn’t filter between sounds. One of my parents would speak to me, the sound growing as muddled as my vision. My father, also known as The Impatient Parent, grew angry and very loudly demanded to know why I wasn’t answering him. After I replied that I couldn’t hear very well without my glasses, he grew angrier and sent me to my room.

I reflect on this particular day of my third-grade life, trying to recount what I heard exactly. My senses have always had a tendency to jumble, to blur: sometimes I’m unable to discern which “input” is overloading me, or one particular input converges with another, or I just totally lose track of all input and enter trance mode.

Yet, I think that sensory dysfunction wasn’t — and isn’t — the whole story here. Lately, I’ve been super conscious about my eyes, where they look, how often they dart, whether they meet with another pair of eyes. And while I’ve always felt that eye contact is “unnatural” for me, I’ve never really thought about why this is so. And tonight, during book club, I realized where my default “gaze” landed in a group where autistics are the majority: the lips.

I can’t decipher a person’s emotions based on the dilating of pupils, the half-closure of eyelids, the flicker of irises, the subtleties of eyelash movement. But I can recognize a smile, a smirk, a frown, a tongue. And if I combine those lip movements with the volume level of a person’s voice, I’m much more likely to reach an accurate emotional interpretation than I am if I’m focusing on eyeball gymnastics. I wonder if the eight-year-old me interpreted hearing synaesthetically, as an alternative form of nonverbal communication, one that made more sense than pure auditory listening. As a child, I’d sometimes move my lips and would assume others could “hear” me — because I sometimes couldn’t discriminate between the words in my head and the words escaping my mouth. Even today, I have voice modulation issues: it’s difficult for me to speak in the perfect “inside voice,” to recognize whether I’m too soft or too loud. Even when I whisper, my voice sounds loud to me.

Certainly, my eye contact and voice modulation “differences” were more visible and pronounced when I was younger — but, in some ways, those differences were more acceptable then than they are now. An eight-year-old who refuses to look at her teacher and speaks in mousy (and/or non-existent) tones is read as “shy” and “cute” and “silly.” It’s not so cute and silly now.

My eighth-grade Drama/English teacher made me her eye-contact-and-voice-projection project. I’d stay after school and she’d force me to look at her. While talking loudly. While robotically moving and hand-ticcing. I soon became her body-language project as well: I was perpetually stiff and stimmy.

This past summer, I pulled out videos of my eighth-grade performances, plays where I somehow managed to land large roles. Upon hitting play, I reeled away from the TV screen, semi-mortified: my hand gestures looked as if I were doing a really bad version of the robot dance. And my voice — I couldn’t quite see my face, so I couldn’t quite read or hear everything — but it sounded very monotone-like. Very marked, in the way we might think of difference being marked or markable.

“Stare at the bridges of their noses,” Mrs. H would say. “Look at the back wall. Move to stage left. No — the other stage left. Lower your hands. Hands at your sides — put your hands at your sides. Pick up the quill — and stop wringing your hands. Stop wringing your hands. Count to three between each sentence. Count to three after every punctuation mark. Louder. Louder. Look me in the eye. ”

I feel as though I’ve naturalized “mortified,” as though I have embodied a state of mortification. Watching old videos and looking at old photos is almost painful — and yet, it shouldn’t be.

I sometimes wonder what would have happened if I’d been diagnosed much earlier, in kindergarten. Who would I be now? How much more or less would the autism have been beaten out of me? Would I even attempt to pass? Would I have felt more confident in being the autistic me, rather than the faux-NT me? Would I like and appreciate my younger, videotaped self more?

My cousin trying to turn my face toward the camera

Stimming is more fun than Santa

I realize that, lately, a dominant theme of this blog has been about de-binarizing disability. Yet, being a binary would be so much easier to identify with than being an autistic who feels compelled to pass, yet so often fails (and fails hard). (And I suppose that this “easiness” is the problem with binaries — so unrealistic, so simplistic, so twofold.) Sometimes I wonder: do I have autism or passism?

Binaries

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 autistics.org 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 autistics.org, 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.

Wordle

A Wordle representation of my blog:

I like the way Wordle emphasizes the most-used words in my blog. Wordle is sort of like an image-based invention activity, in a way. In looking at how these words are arranged — words that I’ve already used — I wonder at how I might balance the ratios in further writings. I also wonder about what’s missing, or what’s hardly visible: words such as rhetoric, theory, disability, and, most shockingly, Jeff Lynne and ELO. I need to turn up the dial on my perseverative brain!