Mixed metaphors

What is it with the autism spectrum and the word umbrella? Talk about a mixed metaphor. When I think of the metaphor that is “spectrum” — that is, in literality, a band of light — the umbrella trope perplexes me. If one is under the umbrella of the autism spectrum, we usually interpret that to mean “one has a type of autism, which is a disorder with various presentations.” But I keep getting a conflicting image in my mind — as if an umbrella is shielding us from a light source? Or the light source forms an umbrella? Or…?

It’s interesting that, in addition to textually referencing ASD in the context of umbrellas, we’re also starting to graphically represent the spectrum as an umbrella:

[Link]under the umbrella of... pervasive developmental disorders

Per this visual representation, “of” becomes a possessive, as if the umbrella belongs to the autism spectrum (i.e., the umbrella of the autism spectrum = the autism spectrum’s umbrella). Still, I fail to see the connections between umbrellas and spectra in this visual. So, um, maybe the spectrumish umbrella should look like… this?

under the umbrella of the autism spectrum

Of course, why mix two metaphors when you can mix three?

[Link]under the umbrella of the spectrum puzzle

So — not only is the spectrum something that can be encapsulated under an umbrella, but it is encapsulated under an umbrella that comprises multi-colored puzzle pieces. I’d like to say that the creator of this metaphoric monstrosity (eep! metaphor #4) created the puzzle motif as a comment toward the horror of mixing metaphors nonsensically — that is, that the trope-joining of umbrellas and spectra is puzzling, indeed. However, the puzzle motif obviously relates to the “autism as puzzle” metaphor, a metaphor that portrays autistics as “missing a few pieces.” </gag>

Of course, why not take the spectrum-umbrella marriage a [metaphorical] step further? Why not medicalize umbrellas, just like we’ve done with physics and rainbows and wavelengths?

[Link]umbrella with kids underneath

According to this umbrella-spectrum model, different cloth panels of an umbrella point toward specific learning differences and difficulties, a non-rain-proof continuum that makes little children become wet and distressed.

Boy with weird hair says: And I thought umbrellas were to stop me from getting wet!
Girl with missing bottom lip says:
Too late. You are wet!
Girl with string hair says:
Hey! That’s not very nice!
Girl with missing bottom lip replies with:
Man! I always seem to say things wrong…

Perhaps if this clinical umbrella-spectrum were visually designed to be missing a puzzle piece or two, this trope-fest would make more sense? </sarcasm>

This mixed-metaphor, umbrella-spectrum rant isn’t limited to random images that I unearthed on the interwebs. People are writing books about the autism spectrum umbrella:

[Link]
book cover: girls under the umbrella of autism spectrum disorders

This visual makes me even more confused. Which part is the visual representation of “spectrum”? Which part is autism? And what’s the metaphorical significance of the umbrella, of the huge doomsday wave? Is autism the doomsday wave? Or is the wave the spectrum that is autism — as in, a pun on the physics understanding of wavelength? And maybe autistics are like unique little wave crests, all crashing down onto helpless NT umbrellas? Or maybe autism is the umbrella, which is also a spectrum, which is also a challenge, and the wave is a challenge too, and it’s about to drown out the helpless, challenged, little autistic girl on the beach? Or maybe the author ran out of title ideas.

More umbrellas, more autism, more rain:

[Link]
dark and rainy day, an umbrella over a pile of money and credit cards

Erm. This image strikes me as everything that… isn’t… lovely. I found this on autismparents.net, which linked to an article concerning the finances of families with autism.¬† Apparently, money falls under the umbrella that is the autism spectrum?

In the context of the original article, autism is represented as a money-hungry entity. (So, in addition to stealing children’s souls, autism likes to rob parents of their hard-earned incomes? This image would make Jenny McCarthy proud.) Another metaphor: saving money for a rainy day. Here, the rainy day has come, but the autism spectrum umbrella thing-a-majig has taken the money, so it can’t really be used on a rainy day.

Why must tropes be so complicated? Autism makes a lot more sense to me when I think of it as neurodivergence¬†that presents with a wide variety of embodied/enminded manifestations — makes a lot more sense than thinking of autism as an umbrella owned by a spectrum that may be physics-related but may also involve large quantities of water in the form of rain and/or tsunamis that also happen to like mooching credit cards and/or drenching and drowning children.

Yeah. I think that my explanation is more concise. And more accurate.

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.