diagnosis – autistext

How to train your baby to be neurotypical

On June 23, I attended the Nisonger Autism Institute, a day-long, invitation-only conference that focused on transition across the lifespan. I’ve been wanting to write on my experience there for some time now, but needed a month in order to cohere my thoughts (and to lower my, um, blood pressure).

I should start off by saying that I’m glad, very glad, that they invited me to attend. Moreover, if they host another institute next year, I hope I’m re-invited. In fact, I hope they they invite a heck of a lot more self-advocates. While there, I was told that the attendance tally was somewhere around 110 people and that only three attendees were autistic. This seems to be par for the course with the autism-centric conferences I’ve attended, unfortunately. It’s not a happy sort of feeling.

Not only were the autistic people missing — so too were the parents. The only parents there, generally speaking, doubled as service providers or professional advocates (e.g., teacher’s aides, psychologists, ASA officers). The sad irony? All of the presenters, to the point of redundancy, stressed how important it is to include family members and self-advocates in “the conversation” — yet there were hardly any family members or self-advocates in this particular conversation.

The highlights of the conference, for me, were Pat Cloppert’s presentation on middle school, as well as the presentation on adulthood by Tom Fish, Benzion Chinn, and Patrick Meehan (the latter two being autistic self-advocates).

What I really, really have been itching to write about, though, was the keynote speaker — Sally Rogers of UC Davis. I knew things would be rocky when, at the start of her talk, she made a shout out to Geri Dawson, Autism Speaks’ Chief Science Officer. (One of our protest signs during last year’s AutSpks walk was: Congratulations, Columbus! You’ve just paid Geri Dawson’s salary. Heh.)

In essence, Rogers stressed the now common refrain about the importance of early intervention. And the neuro-normative biases of this presentation smacked me in the face, minute after minute. Rogers described “deviant” behaviors and “language delays deviance,” and then talked about eliminating “atypicalities” through therapy. More than once, she described autism as having “isolating effects” (you know, rather than mention anything about how a neuro-normative society isolates autistic people because they’re “deviant”), and she also posited that she wants to see “less disability and more function.”

Some of the assumptions undergirding her talk, assumptions that make my skin crawl:

It is better to be non-autistic than autistic.
All autistic behaviors (including, but not limited to, stimming, repetition, prosody, ways of communicating or expressing) need to be eliminated.
Autistic people’s challenges primarily arise from being autistic — this, as opposed to autists dwelling within a one-size-fits-all world. (I’m not saying that autism doesn’t cause challenges. I am saying, however, that representing autism/autistic people as a big bad problem to be eradicated is 1) flagrantly ableist and entrenched in a medical model of disability, and 2) deflects attention away from that ableism. I’m sure I’m saying other things, too. I just haven’t decided what else yet.)
One can train away autism.
We need to take as gospel all of the common, dehumanizing ideologies associated with functioning labels, or what it means to be a “functioning” (and thereby more human and desirable) person.

Toward the end of her talk, Rogers showcased several video clips: autistic babies vs. NT babies. And something really disturbing (I think) happened: when she prefaced a video with here’s a typically developing baby, the audience cooed, laughed, reacted happily. When she prefaced a video with here’s an autistic baby, the room grew silent, solemn, non-responsive.

A girl toddler with a book is being hugged by a boy toddler. The girl is younger and is looking away from the camera, while the boy is smiling, looking toward the camera, and pushing the girl's face toward the camera. — Pop quiz! Which one is teh cuteness omgbbq?

I don’t laugh at babies. Unlike the pope, I don’t kiss babies that are thrown my way. I admit it — babies and I don’t jibe. In that moment, though, I wished I were a baby-liking sort of person — that at least I would have been reacting, laughing, or goo-gooing over the many cute autistic babies.

I don’t think that cute and autistic are mutually exclusive entities. And it’s disturbing to me that service professionals do not find (or behave as though they do not find) those whom they serve to be adorable, cute, beautiful, intelligent, or funny. Unless those whom they serve were to become “more typical,” that is.

At only one point did the audience react positively toward an autistic baby: when Rogers claimed that this baby, because of intensive therapy, was “virtually asymptomatic” and “as cute as can be.” Then the audience laughed.

*headdesk*

Really? I never would have guessed that you’re neurotypical.

For starters, you don’t look neurotypical. I should know, after all, what neurotypicals look like. I saw one on TV once. And my cousin’s dog-walker’s kid sister is extremely neurotypical — she cracks her gum and wants to be like Paris Hilton when she grows up. Her poor mother.

You’re too well-adjusted to be a neurotypical. You alphabetize the contents of your closet. Neurotypicals can’t even find the will to put their laundered underwear in their dresser drawers. They’re that cognitively damaged.

You sound nothing like a neurotypical. You’re succinct and honest, and not once have I ever heard you gossip. And, sure, you like to watch the occasional chick flick, but that’s a human thing, not a disability thing. If you were really, truly neurotypical, you’d blubber incessantly and inconsolably over trivial things like 10 Things I Hate about You or the entirety of the E! Channel.

You can’t read anyone’s mind. And everyone knows that neurotypicals are so afflicted that they can tune into others’ thoughts. They’ve got these savant-like cognitive powers that border ESP sometimes, yet they can’t even round off Pi to four digits. Fascinating, but so tragic.

I know you have three official diagnoses and all, but I think you need a fourth opinion here. I mean… you… neurotypical? Seriously? I read a WebMD article on neurotypicality once. These people are socially deluded. Your team of “board-certified” and “world-renowned” neurologists probably have some ins with big pharma or something.

I saw this television documentary on the neurotypical “spectrum” last week. All these poor little kids, suffering horribly. The fact that you don’t want to drive a metal stake through your skull in order to end your horrific existence means there’s absolutely no way that you’re neurotypical. Goodness knows that real neurotypicals want to be cured.

I saw you wearing an IEEE t-shirt once. Neurotypicals aren’t even sentient enough to pronounce “engineer,” never mind understand what an engineer does.

Do you really want this label? Labels have stigma. They create their own realities, and you might get trapped in the process. Do you really want to become an addled hairdresser, or worse, a politician? I mean, sure, some neurotypicals have found monetary “success” — e.g., Fran Drescher, Adam Sandler, or Dick Cheney — but they’re the exception, not the norm. Most neurotypicals end up in trailer parks, saddled with 40K in student loans, 30K in credit card debt, a closet full of “nothing to wear,” two ex-husbands, and 2.5 children to boot. I’m really afraid that this label will set you on the path to destruction.

You’re a guy.

Don’t you know that all neurotypicals speak? In fact, they don’t shut up. You and your PDA-mobile-text-machine thing just don’t fit the NT mold.

If you were really a neurotypical, you would have been diagnosed as a toddler. Such a severe cognitive handicap would be obvious, not something that would be misdiagnosed or overlooked. It doesn’t matter that neurotypicality wasn’t included in the DSM until four hours ago — people would have known. NT children are the pretty-in-pink brats running around with fake telephones, the kids who pester their poor autistic siblings to play “dress up” and “let’s go to the mall.” They bring the whole family down with them. The disease is just that bad.

Neurotypicals crave romance and affection. They have constant desires to be held, to be told how wonderful they are. You’ve only had one partner, maybe two. Really, you’re just not that “severe” when it comes to attention-seeking and sexuality.

Did you know that one NT child costs the average school district about $25,000 annually? Imagine all the non-NT kids we could be helping with that money. So, how dare you claim to be NT! I think you just want to mooch off the system. You and your excuses.

But, honestly, you can’t be NT because I, as an autistic person, say so. The sheer fact that you would risk putting yourself in a (dis)abled position endows me with the power to name and claim (dis)ability — or lack thereof — for you. Don’t you realize that (dis)abled people cannot name themselves, cannot label themselves, cannot enculturate themselves, cannot take pride in themselves? Don’t you realize that those who are deemed normative will always know more than those who are deemed non-normative?

Don’t you realize that everyone else will always know more about you than you?

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 autism 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 outcasts out of other autistics? Are we not already outcasted 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 autism was that of fear and shame, mainly because fear and shame were the emotions I’d been programmed into feeling about autism. 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 autism, because I didn’t come to autism from a lens of difference or diversity — I only understood autism as depressingly embedded in deficit. It took a long while for me to reshape my views of autism 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? 😉