Dx *this*

This is something I’ve touched on in this blog, however briefly: the wonderful (or not so wonderful) world of autism and so-called official diagnoses.

Among other not-so-pleasant things, autism is frequently depicted as the newest “trend diagnosis,” especially within online circles. We only need look to Dennis Leary’s or Michael Savage’s tirades this past summer to get an idea of the over-the-top vitriol surrounding this assessment. Moreover, such comments about overdiagnosis appear despite autism specialists proclaiming that autism is underdiagnosed.

Autistic writers such as Thomas McKean have argued that there is an “ethos” problem within the autistic community, that adult-diagnosed or self-diagnosed individuals have little to no place in the discussions that surround autism and autistics. The folks at autistics.org penned an excellent follow-up to McKean’s assertions. Of course, in addition to the overdiagnosis brouhaha, we have the high-functioning/low-functioning division, that clever binary employed as a mechanism to diminish the ethos of those autistics who do self-advocate.

I want to explore this diagnosis issue more, however, because I think it’s an issue that really needs to be addressed. Many so-called debates in autism discourse seem to prevent autistics from self-advocating, from entering into anything resembling an autistic culture — anything to further someone else’s agenda.

My own experiences with “diagnosis” and “assessment” are mixed. I first learned that I “likely” had Asperger’s when I was a teenager, around the time I dropped out of high school. Of course, the individuals providing such an assessment were not autism specialists, nor could they document my condition “officially.” Something similar happened in college — I sought out counseling at a couple junctures, and was again told that I had Asperger’s… unofficially. In fact, I didn’t become an “official” autistic (ugh) until I began working on my MA degree. What to make of this?

I should note that my age(s) of “diagnosis,” while somewhat older, are not that uncommon (especially for women), and thus I think I’m generally afforded a fairly strong ethos when I participate in autistic communities. But, nonetheless, some people only latch onto the official designation, which occurred when I was of college age. (For example, one autistic person I know in real life, when he learned of my age at official diagnosis, commented that I must be “extremely mild.” I resisted the urge to punch him in the face.)

Contrary to the beliefs of the interwebz, I didn’t wake up one day and decide to be autistic. I was passively labeled as autistic before I ever agentively labeled myself as autistic. I suppose I could have (or my parents could have) more vigorously pursued officialness when I was a child. But, for personal reasons, we didn’t go that route — at least not at that point in my life. However, there was something clearly different about me from birth. (Yes. That early.) Nobody recognized that something as Asperger’s until I was much older — partly because Asperger’s itself wasn’t even an official diagnosis until I was a fifth grader, partly because Asperger’s wasn’t widely and publicly recognized and diagnosed until I was nearly college-aged, and partly because I’m of the female sort, and ASD has largely been seen as a “boy thing.”

This is all very personal, personal in a way I don’t quite feel comfortable writing about. However, I write this because I’d like to think that, eventually, both the autistic community and the autism community could move away from this obsession with age and diagnosis, as if somehow a 40-year-old diagnosee is either more “helpless” because she “lacked early intervention” or is less autistic because “nobody noticed it sooner.” Do we really, truly believe this nonsense?

Obviously, diagnosis can and does serve a purpose. It allows, legally, for access and accommodation. For many, diagnosis is validating and/or leads to self-understanding. Diagnosis can explain a lot. But there are some things that diagnosis just plain isn’t and just plain shouldn’t be. (For example, why must someone possess a legally binding document, a document that probably required oodles of out-of-pocket money, in order to receive an accommodation? In the words of my interwebz friends, WTF?)

I think we, as a community of autistics, need to recognize the structures embedded in diagnosis first and foremost: whether you’re examined by fourteen neurologists at age three or one clinical psychologist at age fifty-three, you can still call yourself an autistic and self-advocate with that ethos. Accordingly, even if you don’t have an official diagnosis, you should still be able to contribute to the larger autistic community, to be a part of this community.

Why are autistics making social pariahs out of other autistics? Are we not already pariahed enough on a daily basis? Autistics are individuals. Autistics are diverse. Autistics come from different places. Get over your own shiny brand of autism and get used to it.

My own reaction upon first learning about my ASD was that of fear and shame, mainly because fear and shame were the emotions I’d been programmed into feeling about ASD. I’d never come across anything remotely positive in association with autism (and these were the days before I’d become truly acquainted with the internet). I welcomed unofficialness because I didn’t desire stigma, because I didn’t comprehend the fullness and richness of ASD, because I didn’t come to ASD from a lens of difference or diversity — I only understood ASD as depressingly embedded in deficit. It took a long while for me to reshape my views of ASD and myself. Although self-diagnosis generally refers to those individuals who voraciously read and learn everything they can about ASD and then recognize themselves in the label, I tend to see self-diagnosis more along the lines of self-recognition or self-identification.

I suppose this post is the result of a pent-up reaction to snarky comments I’ve seen in autistic web forums and listservs, snarky comments made about others. But I’ve also been triggered into annoyance mode by in-person questions. Lately, I’ve been greeted with the when were you diagnosed? question more often than usual, it seems.

I don’t really know how to answer that question. In a lot of ways, it seems invasive: why the hell does it matter? It’s not as if the autism latched to my brain one day in grade 9, and, as a result, I’m not as malignantly autistic as the kid diagnosed at age two. In a lot of ways, I feel as if this question is wrapped in a medical model, or a disease model, of autism and disability. To me, it suggests the idea of a severity continuum, as if teens and adults shouldn’t be diagnosed with autism by the sheer fact that they’re adults, as if only the little helpless children matter, as if only kids are “severe” and in need of “services.”

Moreover, anyone who claims to be autistic and not suffering has to be a joke, right? Why not find every means possible to discredit them — age of diagnosis, self-diagnosis, adulthood, gender, sexuality (gasp! autistic and sexual in the same sentence?), IQ, so-called “functioning” level, speaking style, writing style, stim style, income bracket, and on and on… </sarcasm>

Amanda Baggs has felt the need to post her official documentation online, which, I’m guessing, is due to some of the horrible, doubting comments she’s received on her blog. (One of the sessions I attended at CCCC, on autism and rhetoric, commented on this. The presentation was made by April Mann.)  It’s as if people believe that personhood entirely precludes autism — forget the age or officialness debates. How long do autistics need to keep defending themselves? How long until our ethos is a legitimate one? Highly rhetorical questions, I know.

But back to that dreaded question: when were you diagnosed? I struggle with how to answer this concisely. I struggle with whether I should answer it. I struggle with writing this blog post. I feel as though I need to regurgitate the official diagnosis as my answer, even though I knew several years beforehand. But then there’s also the age at which I self-identified, the age at which I embraced my autism, which is a different matter entirely to most who ask the question — but to me, that moment is the important one, more important than the moments that involved paperwork and stacking cubes.

I suppose, as an autistic writer, concision has never really been my strong point? 😉

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.