autism – Page 7 – autistext

Autism on the beach

I’ve noticed a common cover design in recent autism books: that of a child, usually a boy, hovering near a body of water. In fact, the more memoirs I read, the more I tend to notice this autie-water depiction. These representations appear on books I love, books I despise, and books I feel luke-warm about. It isn’t as though the autie-water portrait appears solely on curebie diatribes or solely on neurodivergent musings. And so I wonder about these aquatically-oriented representations of autism.

Born on a Blue Day by Daniel Tammet

The RDOS Aspie Quiz asks whether or not I have a fascination with flowing water. I’m not entirely sure how this relates to autism, but perhaps it has to do with perseveration, or attention to detail, or the fact that flowing water is very entrancing and makes really cool whooshing sounds?

Reasonable People by Ralph Savarese

Other than the quiz-question theory, my only other thought behind autism on the beach involves metaphor. Does the water symbolically represent autism somehow? Why all the blue? Are we supposed to feel a certain way, think a certain way, assume a certain way before we read these books? An old, overused adage tells us that we should not judge books by their covers — an adage perhaps devised by a cantankerous, ne’er-do-well book salesman? But we do judge books by their covers. And I wonder what we’re supposed to judge about autism on the beach.

Weather Reports from the Autism Front by James C. Wilson

I know that Wilson’s cover photo is an actual photo of his son, a happy moment from a vacation. The cover makes somewhat more sense with this tidbit of knowledge. Yet, I’m very surprised by the puzzle-piece motif on Wilson’s particularly beachy cover: despite being a parent narrative of an autistic son, I consider his work largely neurodiverse in scope. In fact, one thing I most appreciated about Wilson’s work was his frequent reference to autistic bloggers. His (positive) mention of Autism Hub blogs far exceeded references to medical manuals and statistics. He did not portray his son, nor autistic individuals generally, as a medical mystery in need of research and neurobiological scrutiny. Though Wilson claims that he cannot fully understand his son and that his son cannot fully understand him, he portrays NT-autistic communication in a way that speaks to a social, neurodiversity model of autism rather than a model that seeks to eradicate autistic difference in favor of a wholly NT understanding.

Thus, the puzzle motif here is quite puzzling.

Making Peace with Autism by Susan Senator

Making Peace with Autism by Susan Senator

Of course, there are many people and protocols involved in producing, editing, and publishing a manuscript, discussions and decisions that readers simply aren’t aware of, aren’t privy to. How much influence did Wilson hold in the design of his cover? His photo made the cut — but was this the photo he was originally hoping to use? Did he vie for the (ab)use of the color blue in his cover? Did he hold any sway in the puzzle configuration? Was this his cover or his publisher’s cover?

The cover of Daniel Tammet’s Born on a Blue Day makes sense: the blueness of the cover directly relates to the title and perhaps the synaesthetic topic of the memoir. Moreover, more so than the other images offered here, Tammet’s cover focuses intently on sky. Ralph Savarese’s Reasonable People also shows more sky than water, with the child’s face being framed by the expanse of sky. With Senator’s cover, it’s hard to discern whether the water ends — and, interestingly, in all of these covers (with perhaps the exception of Wilson’s), expanse or limitlessness seems to be a rather large theme.

Women from Another Planet? by Jean Kearns Miller
[omg, women can have autism?] </sarcasm>
[ETA: my sarcasm isn’t directed toward the book — which is awesome — but toward the statement before the sarcasm brackets.]

DJ Savarese, Ralph’s Savarese’s teenage son, wrote the last chapter of Reasonable People. DJ uses FC to communicate, and a large focus of the book is dedicated to legitimizing FC as a potential channel of communication for non-speaking autistic. In the context of the book cover, I find this particular passage from DJ’s chapter to be quite illuminating:

“I dream of being a political freedom fighter. I read that pure real people in especially just free waters insist my real decisions really wasted. They think well respected, tested as normal kids are the okay to teach ones. They forget those lost kids. They’re the ones like me who poke or look like they’re not paying attention” (432).

The mention of “free waters” following “being a political freedom fighter” really strikes me here. This is an image I can digest, can embrace when considering autism on the beach. There is something freeing about water, calm about blue — peaceful, to borrow an idea from Senator’s book cover.

Yet, I don’t think that the audiences for these books — or other books that sport autism-on-the-beach covers — will immediately recognize or infer the freedom element of these cover illustrations. As calming and peaceful as blue is, as free as it is, I think blue also runs the danger of being melancholy, solitary, bluesy. I also wonder what stereotypes are reinforced by these images: in each, the (presumably) autistic individuals stand alone by the water as if they are locked into their “own little world.”

This isn’t to say that autistics never go off into their own little worlds, that autistics never stand alone, that autistics never love water and beaches. But I daresay that the frequency of this alone-on-the-beach-and-deep-in-thought imagery constitutes its own weird little genre. And any time a metaphor becomes popularized in autism discourse, I think we need to examine it, to rhetorically analyze it and question it.

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.

Empathize with this

So, one of the popular medical theories surrounding the “puzzle” of autism spectrum disorders involves theory of mind — or lack thereof. Possessing a theory of mind involves the illusion that one can understand what another human being is thinking or feeling, a neurotypical ESP of sorts. Theory of mind largely concerns empathy, the ability to place oneself in another’s shoes, so to speak. Many autism specialists, among them Simon Baron-Cohen, argue that people on the autism spectrum either lack a theory of mind or have an impaired theory of mind. Autistics supposedly cannot empathize with or predict the NT world, and they thus have a whole bunch of communication issues.

Of course, I think that this theory has done quite some damage. Autistics have been represented as characteristically unempathetic individuals. And this “unempathetic” characterization has often been conflated with emotionlessness, conceitedness, apathy, and plain old malevolent and murderous evil. While I don’t deny that I’m hardly able to place myself in the shoes of others, I do posit that no one can really, truly place themselves in someone else’s shoes, unless we’re talking about literal shoes with similar foot sizes. In any event, I think there’s a limit and a danger to this thing we call empathy, because empathy isn’t wholly concrete and logical. Empathy, by definition, involves assumption and guesswork.

Empathy (or imagined understanding) can only be remotely successful when engaged between people with similar backgrounds, people who occupy similar social stations. Thus, in the same manner that autistics have difficulty empathizing with NTs, so too do NTs have difficulty empathizing with autistics. (James Wilson, in Weather Reports from the Autism Front, makes this very point about empathy. He can’t pretend to understand his autistic son’s experiences, his ways of knowing and being. Neurotypicals are just as empathetically impaired as autistics.)

[Jenny McCarthy: “expert” on autism, empathy, and strapless bras]

I like Dennis Lynch’s complication of empathy in “Rhetorics of Proximity: Empathy in Temple Grandin and Cornel West.” In his article, Lynch suggests that true empathy is never possible because such an act results in “bodily displacement,” in colonization or assimilation. So, in order for an NT to step into an autistic’s shoes, the autistic has to physically remove her feet from her shoes. As a result, when an NT claims to empathize with autistic experience, the NT is really imagining what it would be like for an NT to be an autistic — not what it is like for an autistic to be an autistic. The same could be said about an autistic person attempting to empathize with an NT: bodily displacement results.

Of course, because neurotypicality is the dominant neuro-discourse, NT ways of empathizing are considered more acceptable than autistic ways of empathizing. Warning of empathy’s co-optive dangers, Lynch writes,

Empathy in this way may seem like a harmless practice as one imagines how another may be feeling about an event, circumstance, or issue, but, as these critics argue, whatever’s empathy’s expressed aims may be, asking people to empathize usually locates the obstacles to empathy—to listening and to being heard—solely in the minds and habits of individual participants, and so obscures or ignores the political and economic and bodily dimensions of social struggles. (6)

This isn’t to say that empathy is inherently bad or wrong. However, empathy has its limits and dangers — severe limits and dangers. In assuming we can experience the fullness of another person’s “lifeworld,” we erase, or make transparent, very real differences (Lynch 9).