I wasn't shopping for an Asperger diagnosis, I swear. In fact, when "Jane," my new therapist, diagnosed me a few weeks after I turned 44, I was actually shocked. I had chosen her because her profile said she was involved with neurolinguistic programming, which C. thought might help me break some of the unkillable poisonous mental tape loops I couldn't seem to get rid of despite decades of therapy, antidepressants, herbs, amino acids, light boxes, exercise, meditation, torrents of compulsive journaling, an avalanche of self-help books and enough 12-step inventories to wallpaper the ladies' rooms of every Major League Baseball stadium in America.
I was at the snarled end of my wits. I was dog tired of thinking I sucked shit and would always suck shit, that nobody worth knowing would want to be friends with me, that the good relationship I had with my boyfriend was a freak occurrence, that life was basically over for me and I'd never amount to anything. I was terrified of my frequent thoughts of what would happen if C. got sick of my bullshit and decided to dump me -- "I'd kill myself," I heard my inner voice saying again and again, "what choice would I have?" I'd managed to liberate myself, incredibly enough, from body hate, but I couldn't manage to spring myself from Meowser hate. I had no trouble grasping the idea that the way people thought about fat in this world was, shall we say, ass, and that being fat not only wasn't my "fault," it wasn't even anything all that horrible to begin with in and of itself. I got that right away. But where was the rest of my liberation from society's expectations?
During that first session, Jane listened to me talk for ten minutes, then made her diagnosis.
"Asperger syndrome?" I said. "No, I don't think so. I like affection. I'm not a slave to routine. I'm SO not into straightening and tidying things. I don't care all that much about computers."
"No," she said. "Don't look at the stereotypes you see in the media that have to do with little boys. Look at the diagnostic criteria. And think about the way girls and women are pressured to present themselves, and all the things you've done over the years to mask your orientation." She reminded me that Asperger's wasn't even an "official" Diagnostic Statistical Manual (DSM) diagnosis until 1994, so it would have been impossible for me to have been diagnosed as a child or teenager, or even in my 20s.
"But I've seen a kazillion shrinks!" I said. "A kazillion! A kazillion! And how could that happen without any of them even hinting to me that I might have Asperger's?"
"They weren't paying attention," Jane said. "And they didn't know what to look for in someone your age."
Fuck. What if it was true? I had joked for years that I was a "high functioning autistic." But if Jane was right, then that was no joke. (The only across-the-board difference between Asperger's and "classical" autism is that in Asperger's there is no delay in development of speech in early childhood, although some traits are more commonly found in one form of autism than the other.)
So I went home and started looking shit up.
First stop was to find the latest (year 2000) DSM diagnostic criteria for Asperger's, and measure that against what I remembered about myself in childhood.
Couldn't look anyone in the eye? Check.
Had no idea how to make friends with anyone unless they were spoon-fed to me? Check.
Talked at people instead of to them, and didn't have any reciprocal response to what they said? Check.
Assumed everyone else would be interested in what I was interested in, to the point where I'd go on about it for hours not noticing yawning and shuffling of feet? Check.
Wanting desperately to touch parts of objects, just out of curiosity about what they felt like? Check.
Obsessed with stuff almost no other kids (and certainly, no girls!) my age gave much of a rat's ass about? Check.
Not playing with dolls as though they were human, or other toys as if they were the real-life object the toy symbolized? (I was more interested in taking them apart to see what was in them.) Check.
Not really wanting to do what other kids were doing, but wondering why they rejected me? Check.
Couldn't keep my thumb out of my mouth (sucking it until I was at least 10), my finger out of my nose, or my hand out of my clothes to scratch myself in front of everyone, which I always felt like I had to do because everything fucking itched and scraped and pinched me like hell? Check.
Sat there in class anxiously anticipating when I could get to the bathroom so I could take my shoes and socks off and feel the crease marks on the front of my feet? Check.
Had meltdowns in school over nothing, or when the TV announcer said "Gunsmoke will not be presented this evening" before a Charlie Brown special, even though I didn't give two airborne shits about Gunsmoke? Check.
Couldn't catch or hold a ball to save my life? Check.
Had no idea when it was okay to bend the rules, even for something trivial like chewing gum in class, and when it wasn't, because I was always positive I'd be the one to get caught, try to swallow my gum, and puke it up in front of everyone? Check.
Had a bedroom that looked like Axl Rose and the Tasmanian Devil were roommates in it, except for a record collection that was always carefully organized not just in alphabetical order by artist, but arranged by dates of release when I had more than one album by the same artist? Check.
Was almost comically uncoordinated and dropped things and banged into shit and knocked over glasses full of liquid like a 1-year-old? Check, check, checkerooski.
Then I found and took the AQ (Asperger quotient) test developed by Simon Baron-Cohen and got a 41 out of 50 (32 being a "likely Asperger's" result, 35 being "definitely Asperger's.").
Holy shit. It's all true.
WHY THE FUCK DIDN'T SOMEBODY TELL ME?
Well, actually, someone did. I had a friend a few years ago who had suggested I might be aspie. Since all the news stories at the time about aspies were about 7-year-old boys who got upset if you moved the TV three inches from where it used to be and wanted to eat Frosted Flakes in their lucky green bowls every day at exactly 8:00, 1:00, and 5:30 -- and that so wasn't me -- I brushed it off. That's why, now that I know the truth, I never just send anyone out to the Internet to "look it up" if they have a question about Asperger's or any other form of autism. Chances are, what's going to come up first in a Google search will not come close to giving them the right information. Since about 75% of diagnosed Asperger cases are boys, aspie girls are ridiculously under-examined, and, I'm going to guess, under-diagnosed, because girls are expected -- by other girls, by boys, by all adults -- to try and hide any and all telltale signs of aspiehood. A boy can spend the evening organizing his baseball cards or memorizing horror-movie trivia, or not be the world's greatest conversationalist, and his parents probably won't object too strenuously unless they are super-uptight about his sociability. But if a girl does that -- into the snake pit with her! So girls learn to mask, and mask, and mask, and mask some more.
And there's even less reliable information about middle-aged aspie women diagnosed in adulthood, who of course have learned a lot more masking skills from a lifetime of being forced to try to hide their true selves and not even, really, knowing they were doing it. For me, learning those masking skills came with a terrible price -- I became so good at masking (at least for short periods of time while I was out in public) that nobody ever properly diagnosed me before Jane, who knew what to look for. Some repetitive speech patterns here, some squirming in the chair there, some fixating on a drink coaster somewhere else, some staring at her face for a few extra seconds the way I'd learned to do in order to be able to make eye contact with people...and she nailed me.
Later on, I discovered the definition of the Asperger (visual-spatial) type of hyperlexia -- a rare condition associated with the autism spectrum in which children spontaneously start reading on their own and learn to say and spell words well above their age level without ever being taught, but have huge deficits with understanding spoken language and the subverbal nuances of it, and also with visual/spatial/motor issues. I could see the ball coming just fine, but what to do with my hands other than cover my face with them? NO CLUE. When I drew a picture as an 11-year-old, it looked like the work of a 3-year-old. And if my mom told me to "set the table," over and over again I didn't realize she meant right now. (There's also a "classical autism" type of hyperlexia in which reading is mastered quickly, but not the pronunciation of complex words, and there are fewer visual-spatial deficits.)
"Holy crap," I thought, "this definition should have my damn picture on it."
I know comparisons between stigmatized groups of people can never be exact, but I figured that what I was experiencing had to be something like what some gay people in the 1970s experienced when they realized (or consciously acknowledged) for the first time that they were gay, the ones who'd gotten het-married and had kids 10 or 15 years earlier and moved to the suburbs because that was what you did then if you weren't radical, you just did it. They had never stopped to think about why they'd never had the hots for their spouses even while dating, and in fact had never really felt that way about anyone of the opposite sex, and had tried to shrug it all off with thoughts like, "I must be frigid," or, "Nobody's that crazy about his wife." Then they met someone who did make their knees knock, and for the first time, they were actually allowed to think about the fact that everything they'd been told about how they were supposed to react and behave just did not apply to them. It was all a lie. All of it.
I'd lost friend after friend. Job after job. Roommate after roommate. Lover after lover. Just lost them and lost them and lost them, in ugly ugly ugly ways, even though I tried so hard to be good. Once in a while, when they could bring themselves to, they'd tell me why I was losing them.
Lisa said you were staring into space for ten whole minutes and not doing any work. I'm going to have to write you up.
Didn't you see me look at you? Couldn't you tell you were annoying the crap out of me with all that blathering about your issues?
You call this clean? Did wolves teach you how to wash dishes?
The way you stare at me, it's just so weird, I can't take it.
Error after error for which I could never be forgiven, even after apologizing and apologizing and apologizing and busting my ass to do better. Once people decide to wash their hands of you, that you're just too odd to be worth the effort, that's pretty much it.
But mostly they wouldn't even tell me. I'd just be frozen out, without another word.
God, if only I had known, I could have told people, could have told myself. They and I would have had at least a few clues ahead of time about what to expect. I wouldn't have kept trying to fit where I didn't fit, do what I couldn't do, make it okay when it never would be, tell myself I could make it work, everybody else does, I have no excuse.
The stress of it all damn near killed me.
The "treatment" for this condition when I was a kid basically consisted of adults yelling at me to TRY HARDER STOP BEING LAZY I KNOW YOU'RE SMARTER THAN THIS YOU IDIOT GET YOUR FINGER OUT OF YOUR DAMN NOSE ALREADY AND QUIT MAKING ANIMALISTIC NOISES AND BUMPING INTO THINGS NO WONDER BOYS DON'T LIKE YOU. Yeah, that helped, thanks bunches.
Thinking I must be insane, I sought therapy, starting at age 14. Obviously, the shrinks I saw before the Asperger's diagnosis hit the books at least had a partial excuse for not getting it. But even after that, shrink after shrink had just looked flabbergasted when I told them about what I was thinking, and said things like, "Well, that shouldn't be," or, "Just make sure you breathe nice and deeply, and you'll feel better," or, "Let's try a different drug," or, "You need to stop thinking that." Well, no shit Ex-Lax, what the fumphering fuck am I paying you for?
The "treatment" I was to undertake now, under Jane's tutelage, consisted of understanding that this was the brain I had, it was what it was, and learning how to explain myself to people when the situation called for it and stop expecting myself to function like a neurotypical (NT) person -- that is, someone not at all autistic. Because I'm not like them, and no amount of TRY HARDER HARDER HARDER was going to make me become like them. And of course, learn to appreciate the unique and special ways in which my mind did work, and understand that I was not a failure, that I had been discriminated against for this for decades and not only didn't I know it, but the people who instinctively recoiled from me didn't even know why they were doing it, for the most part. I didn't have "super ADD," as I had previously assumed. (And yes, I'd been on ADD meds and alternative treatments and not gotten any better.) This ran much, much deeper than that.
In other words, I had to purge myself of what I have come to think of as "normalcy fetishism." As long as I was insisting on judging myself according to NT standards of behavior and achievement -- instead of giving myself some goddamn credit for coping as well as I have with the limited resources I was given to work with, in terms of not ever having had the tools before to understand my own brain -- I would always be depressed, I would always hate myself, I would always think my life was shit on top of more shit with a cherry-shaped dingleberry as the capper. It had to stop. Even if it took me the rest of my life to bury it completely.
Normalcy fetishism is why members of stigmatized groups, when trying to make themselves more acceptable to people who are not in their group who are prejudiced against them, will often allude to the ways in which they're "just like everyone else except for characteristic X." They know it's easier for other people to accept them if they don't come across as "too" different. "We're just like you! We don't bite, honest!" To my mind, there's a pretty huge gap between "just like you" and "don't bite," but xenophobia in people runs pretty deep. It takes an awful lot of enlightenment not to equate the two, in both directions, and to explore the entirety of the vastness in between.
And there's nothing like being on the autism spectrum to remind a fatasspie that all this "last socially acceptable prejudice" stuff WRT fat really is bunkum. There is no such thing as someone who loves and respects every kind of person in the world and draws the line only at fat people, because fat means something to the hater. And what it usually means is, "we can accept people being a little different from the WASPy/able-bodied/standard-brained/sexually binary/male-identified/upper-caste/heterosexual/monogamous/youngish norm (am I leaving anything out?)...but not that different. Not different enough to make us squirm."
And boy, do people on the autism spectrum ever make straitlaced liberals squirm, even if most of them don't even realize they're squirming, and will probably deny it if asked. (That's what I like about tighty-righties -- they admit that they think you're fouling their air.) Neurodiversity (a movement which proposes that autism isn't the horrible tragedy most NT people imagine it to be) is a lot like fat acceptance; it's something which, if you sign on to it, marks you as a fringy person indeed, even among people who think they're All About Inclusion. Not wanting a cure? Thinking you don't need to wear yourself to the nub trying to pass for NT? Thinking you deserve services to help you live better, rather than a single-minded effort on behalf of society to wipe the likes of you out? It's like...well, a little like being a fatass who won't diet, I suppose. There's even a linked group of neurodiversity (ND)-related blogs not dissimilar to the Fatosphere, called the Autism Hub.
Once in a while I start thinking, why am I such a pseudonymous coward on the Internet? I start thinking, maybe I should start attaching my full legal name to my writing. Let it all hang out about all the beyond-eccentric contents of my head. Let everyone know that I'm fat and aspie and a full-on hirsute feminist and have a big old bald spot, and I'm not sorry about any of it. Oh, and that I'm a lot older than I look, too. I should get on Twitter and Facebook like everyone else is and not use an alias. Maybe I should even tell my boss about the Asperger's. I was hired remotely for my job and I work remotely, he's never seen me and I've never seen him. He must wonder about some of my work habits, that I sometimes leave my desk for hours at a time, or start and work so late into the night, going to bed at dawn most nights. The quality and nature of my work (they desperately need people to cover overnights) is such that I get away with it, but once in a while I think, he probably thinks I'm the strangest person he's almost met. Maybe I should reveal myself to him. And everyone else in the world. It's not THAT bad, is it?
And then I read something like this piece I saw recently in a popular online publication about a woman's "high functioning" (i.e. speaking) autistic son having turned violent on her, and blaming the autism for it. (The reason I'm not naming the author or the source or linking the story will become clear a few paragraphs from now; if you want the link, please email me, andeejr at geemail.) This, after having spent years being an ND advocate. And I think, no...no way, no how. If just anyone can find out I'm not NT, I might as well prepare to live in a washing machine box under the Burnside Bridge. Underground is where I must stay. Too many people think we are way too dangerous.
Now, don't get me wrong. I don't want to minimize how absolutely terrifying this woman's experiences must have been. A big reason I never had kids is because I was afraid they would turn on me, a more than trivial possibility given the fact that I'm, how you say, neurologically interesting. I would never tell someone who's being abused by a family member for any reason to just "suck it up and deal" -- I'm really not a "suck it up and deal" kind of person, generally. And I'd never say her kid should be let off the hook for whatever he does because he's an autie.
But I was very, very disturbed by this story, and not necessarily in the way that the author intends it to be disturbing (as she apparently assumes her audience in its entirety is neurotypical).
For starters, she speaks of her HFA (high-functioning autistic) college-age son by his real name while going into exquisite detail about his actions. (And yes, I know "high-functioning" and "low-functioning" are somewhat problematic labels, as is "autism spectrum," not least because pretty much every aspect of an autistic person's behavior has a "spectrum" of its own, but I'm applying current diagnostic definitions here as shorthand.) Does she really not see how this could be a MAJOR sandbag for him later in life, if and when he recovers sufficiently to look for a job and/or a place to live? (And does she really think that couldn't possibly happen, that he's guaranteed to spend the rest of his life locked up with tranq darts in his ass?) People don't read something like this and think, "Oh, he did all that a couple of years ago, he looks like he's better now." No. Especially not in this economy, where jobs are at a premium. They read something like this and think, "This guy is TOXIC. I can't take the chance of having him around." Even if he manages to nail down enough of a disability check to live on (which, again, in this economy would take a small miracle), who's going to want him as a roommate or a tenant with that reputation following him around the Net like space turd vapor?
She also talks about the fact that she'd rather have a child die of cancer than experience what she's experiencing now. (Is there any doubt which one of her kids she'd sacrifice to terminal malignancy?)
She says she's stockpiling sleeping pills for an overdose in case the social shame she'd experience as a result of his actions means she'd have to take her own life.
And worst of all, she was happy for all those years until now because she thought her son was "cured." He passed for "normal," with a few lovable quirks, and that was why she valued him. Now she realizes she was all wrong, and that autism probably just is not all that okay because autism means violence. He even tells her flat out that the reason he acts the way he does is because "I don't like being caged" -- that is, institutionalized. Why doesn't she listen to him?
Neurodiversity, my left front buttcheek. Normalcy fetishism -- it's the brine of human pickles.
At least this writer acknowledges that her son might have some justifiable anger at a world that's hostile to people like himself. The comments on that story (and yes, I read all 40-odd pages of them, I just love having my brainpan stretched out on a rack) are, for the most part, even worse. Comment after comment of (paraphrasing) "You are so brave," "Thank you for writing this," "We have to get the truth out about those people, they're dangerous, we must
They talk about us like we're not even there. Like we're not even in the room. Like we're all simultaneously 100% blind, 100% deaf, AND unable ever to read Braille. Because that's the only way we could possibly not know what people are saying about us if we don't manage to pass for "normal." What the entire world thinks of us, with no safe haven in sight. What bipedal garbage we are. How worthless.
I'm surprised the rate of violence among autistic-spectrum people isn't higher, frankly. They torture us.
This is not an isolated incident. There was a video that made the rounds a couple of years ago called "Autism Every Day" (Amanda of Ballastexistenz blogged about it here), in which NT parents (only) of autistic kids were interviewed, instructed to make their home environments look as chaotic as possible, and these parents went on about how awful awful awful their lives were and how they so ached for their children to be NT. One mother actually said she thought about driving her child off a bridge -- with the kid sitting right there while she said it -- and said the reason she didn't was that she didn't want her neurotypical child to suffer. And once again, she was lauded by commenter after commenter as "so brave."
Over and over again I've read stories of parents who openly and passionately wish for their children to become neurotypical, and we're not even talking necessarily about the relatively rare cases where kids don't ever communicate at all other than screaming all night, banging their heads on the floor all day, and eating their own shit. One mother, for example, talks about how embarrassed she is that her 8-year-old son wants to be Mickey Mouse for Halloween instead of wanting to be Frodo like all the "normal" boys in the neighborhood. Do these people think their kids don't know exactly what their parents think of them? I'm not talking fleeting thoughts or normalcy pangs here, or even the mourning process that often follows initial diagnosis; that I can understand. I'm talking about openly wishing your kid was something s/he is not, right where they can see and hear, again and again and again. (See Jim Sinclair's seminal neurodiversity essay Don't Mourn for Us for an excellent breakdown of the difference between the two.)
When someone famous calls autistic kids brats or fakers, like man-shaped pubic louse Michael Savage or Denis "I Stole All My Funny Bits From Bill Hicks" Leary, people scream with outrage, of course, and most especially parents with autie kids. But as ND bloggers like Bev of Asperger Square 8 and Autistic BFH of Whose Planet Is It Anyway pointed out, so-called "autism advocacy" groups consisting almost entirely of NTs, like Autism Speaks (link refused), have been calling autistic kids "empty shells," "train wrecks," and "tragedies" every fucking day for years without a peep out of anyone. (And as soon as I read that, I kicked myself for not having made the connection on my own. Shit. Of course.) On the Whose Planet thread, one commenter opines -- quite accurately, I think -- that the reason for this is that calling kids "brats" is insulting to the (presumably NT) parents more than it is to the kids; insulting the kids is just dandy, because they couldn't possibly know anyone is insulting them. (Oh?)
Since I'm such a New York wiseass, I couldn't help but think the following after reading the comments to this article (which I saw after the comments were closed): "So if we can blame this young man's violent outbursts on his being autistic, can we also blame the Tate-LaBianca murders on Charles Manson's not being autistic? I mean, sure, an autie or aspie person could have come up with the plan for those murders, but it would take an NT person to have the mindreading and mindfucking and peopleherding skills to cultivate a cadre of a couple dozen young followers and convince them to sacrifice their lives to slash up all these people they didn't know boo about, wouldn't it?"
"Oh," you say, "no, no, no, Manson didn't have all those people killed because he was NT. There was something else going on in his head besides being NT."
Yes, it's true -- you can be autistic (including Asperger's) AND have other stuff happening from ear to ear concurrently that would make you much more mentally interesting than average, even without the autism. (Not that people with diagnosed mental illnesses are any more violent than the rest of the population as a group, but still.) You can be autistic AND have psychosis. You can be autistic AND have schizoaffective disorder. You can be autistic AND be bipolar, unipolarly-majorly-depressed, oppositional-defiant, obsessive-compulsive, or whatever other DSM-IV-TR alphabet soup they have to plaster you with to get insurance companies to pay for whatever help you're getting. You can even be autistic and just be a common-garden-variety dislikable buttcyst (at least to me) or undiagnosable sick fuck. (Meowser's definition of "sick fuck": Someone who actively gets off on harming other people.)
I'm not saying we should place people on the spectrum above reproach or even research. The point is, this author doesn't even seriously consider the possibility that her son's problems could be the result of something doctors haven't diagnosed and possibly can't diagnose, that even the "best and brightest" of mental health professionals can be dead wrong or ill-informed (or simply pre-clue because there's not enough information out there yet) about what's going on in their patients' heads. She's all too eager to blame autism-qua-autism. It's easy to do. Especially if you're convinced, like most people are, that we're just veggies who feel nothing and understand nothing and don't have any life outside our own echoey heads. Then you can say whatever you like.
I don't deny, however, that auties and aspies often experience mental illness in a different way from that of NTs, and that because people working in mental health often don't understand that, we're subject to a lot of wasted time and energy from them at best and outright abuse at worst that can set us a lot farther back than NT patients with the same illnesses. I kept wondering if the author of this piece had read any of Amanda's work at Ballastexistenz, particularly when she writes about the horrors of being institutionalized and the often deeply-hidden-from-the-public ways in which autistic people (and others) are badly abused in such places. She might not have any idea of what her son has experienced, even before he "snapped" or became what she calls a "monster," and he might not be telling her because it skipped his mind, or because he thought he had already told her, or because he didn't think anyone would believe him. Or maybe -- just maybe -- because he didn't want to scare her. Because some of our thought patterns can be flat-out scary if we have mental illness at the same time as being autistic, and all that much more so because hardly anybody understands us, even people whose highly-compensated job it is to do so.
Allow me, if you will, to put my own brainmeats under the magnifying scope for you. I was never of a mind to do violence to anyone but myself (well, okay, I had fleeting fantasies, but that's about it). And frankly, I didn't have the guts to seriously hurt even me; being a pain wimp was probably protective in that area. But when it came to self-injurious thoughts, I bowed to no one, and knowing that I was "different" didn't stop it. You'd think that finding out the truth about myself would have instantly let me off the hook, set me free, propel me straight ahead on my glorious new life adventure. That's how NTs say it's supposed to work, right? Nope, not here. I had to get a lot worse -- dangerously worse -- before I started getting a lot better.
About six months into my therapy, there was a new wrinkle -- I managed to read "privilege lists" (like Peggy McIntosh's Unpacking the Invisible Knapsack) or articles on white privilege like Jessica Hoffmann's Open Letter to White Feminists, and instead of thinking, "Oooh, what an enlightening new thing to know about!", I thought, "Great. One more reason I intractably suck -- my very presence on earth means I am robbing women of color of their peace and safety and dignity. I am a murderer and a thief. And I've done nothing in my life to justify it. Nothing. I should just die."
And nobody had to tell me that that was a bizarre, extreme, and totally inappropriate reaction. I knew. It didn't stop me. It just made me feel even worse about having it. "See? That PROVES I'm beyond help!"
I wasn't feeling suicidal 95% of the time, but that 5% put me in grave danger. During that 5%, my head belched out migrainous pulsating torrents of toxic verbiage. DIE. DIE. DIE. You deserve to DIE. You should take a woman of color you don't know and her kids into your house, train her to do your job, leave your purse on the table, strap some weights to yourself, and just quietly wander off into the Willamette. If you don't do it, you are a fucking coward. I had contracted with several people who cared about me not to harm myself, but that didn't stop me for praying for a terminal illness to take me. I read a story on people who had jumped off the Golden Gate Bridge and started to calculate how I could get away with doing it before anyone found out. What stopped me? The possibility that I could survive the jump and be in intractable pain forever. Like I said, pain (at least the self-inflicted kind) is something I avoid at all costs. Or at least, I like to think I'm good at avoiding it.
I found out later that this thought pattern -- beating oneself sporadically but mercilessly over the head with an idee fixe, even while intellectually "knowing better" -- was not uncommon in people on the spectrum with major depression. And Jane, to her credit, quickly realized that unless she referred someone who could get some pharmaceuticals into me fast, I was a dead duck. But yeah...even working on it pretty much every spare minute I had, I couldn't break the cycle of horrible thoughts (which, of course, were of zero actual help to any woman of color) until I was drugged out of them. Hard. (As it turns out, Remeron, a tetracyclic, worked a lot better on my brain than anything else I'd been on, and it worked even better with decent therapy.)
As Jane put it, "We want you to care about social justice. What we don't want is for you to 'care' so much that you destroy yourself. Life isn't a zero-sum game with you as the loser who has to die."
I also came to understand once and for all that there was really no such thing as avoiding privilege as an individual; there is a huge difference between being St. Francis of Assisi or Gautama Buddha -- people who made a conscious decision to spurn inherited wealth because they felt a higher calling -- and just trying to earn as little as possible and not pursue my passions out of guilt, which was what I was doing. I was actually one of the rare people with a job in which I could increase my income by working a little smarter; why the hell wouldn't I want to do that, then? Poor people don't need me to work at staying poor on purpose in solidarity with them, for cat's sake. They wouldn't, if they had the chance; they're not stupid.
And what ultimately broke that thought pattern for good was developing an awareness that those of us on the spectrum who have fluent speech are privileged over those who do not. Does that mean the non-speakers would demand of those of us who speak that we cease doing so? Of course not. That would be ridiculous. All they want is for us not to be entitled jerks about it.
And incidentally, for anyone who says, "Oh, nobody wants to cure people with Asperger's, just the people with real autism!", I have two things to say about that.
One, I don't find that statement any more comforting than, "Oh, we don't want ALL fat people to be required to have gastric bypass, just the ones with BMIs over 40!" If you don't see that forcing unwanted and dangerous treatments on people for being different is the potential problem here, as opposed to my being afraid that *I* will be the one subjected to said treatment first, then I honestly don't know what else to tell you.
And secondly, there's not a whole lot of difference in the presentation of Asperger's and HFA, especially in adults; speech delay in early childhood is the principal differentiating factor, remember, and a lot of the public display of stereotypic or "stimming" (repetitive movement) behavior that marks a child as "autistic" to an NT often disappears or diminishes by adulthood, too. (Stimming in private's another deal; I, for one, have developed a whole vocabulary of "secret stims" I use when I go out, like crocheting granny squares on buses, and boy, can I ever stim when I'm by myself.) If they want to replace autistic brains with nonautistic brains -- thereby rendering the owners of said brains different people altogether -- they mean me, oh yes they do. Not that it would be okay if it didn't, but there's a reason groups like Autism Speaks pad their numbers with aspies and PDD-NOS folks and the like; the better to promote the idea of a Bad! Brain! Zombie! Crisis! Eating! Your! Babies! And! More! Coming! Everyday! They don't want aspie kids, either, trust me. (If curebie parents think it's vexing for their non-speaking autie kids not to talk to them, and would consider them "cured" if only they could talk (or write), they might want to be careful what they wish for; we aspies and other speaking auties aren't known for mincing words, you know. As Amanda Baggs once hilariously -- and acutely -- put it on the heading of the Autism Curebie Bingo Cards, curebies seem to "want nothing more than to teach child autistics to speak and adult autistics to shut up.")
And why do I, personally, snot off on the whole idea of "cure"? It's real simple. In the entire history of neuroscience, they've never manage to "cure" any other brain difference with bugaboo du jour status, whether it was left-handedness, homosexuality, or schizophrenia, and it's not because they didn't spend unfathomable amounts of time and money and person-hours trying. So what on earth makes them think they can "cure" this one? Whether it's even a good idea to try for cure is almost irrelevant if it's not even physically possible.
But I'm a fatass. And that's how I know that the absence of real cure isn't going to stop people from pushing lots of fake-ass "cures" that not only don't work, but are actually harmful. (Or might work in rare cases of allergic reactions, seizure disorders, or toxic-mineral poisoning which can mimic autism, but which don't apply to the vast majority of autistic kids. Not naming any names here, but if you're someone who's making a ton of money from "here's what I did to cure my kid!" hype when your kid either wasn't truly autistic in the first place, or simply acquired speech and life skills with age like many autie kids do without any such fake-ass "cures"...yeah, karma's coming around to YOU.)
And I cannot understand why we sink almost all the resources devoted to autism in the U.S. into the quixotic search for what will transform our brains into NT brains, when autistic and Asperger kids, families, and adults need services and support right now, with the brains we have today. (And need I tell you about people from lower-income backgrounds who don't know where to start with any of this because they don't even have the resources to diagnose their own or their childrens' neuro-orientations, let alone learn to work with them? And for an extra helping of awesomesauce on top of that, there is still the problem of widespread racial and cultural prejudice that leads to useless memes like "our/their people don't have THAT problem.")
I don't need to be body-snatched, thank you, I need more people to understand my condition, really understand it, not just assume they do because they read some article about someone's scary kid. I need to learn to work with the brain I have. I need to know what to do with my hands and my legs and my face on a job interview that doesn't take place over the phone, damn it. I need to know when it's worth explaining myself to people and when it isn't, and how best to do that. And most of all, I need to learn how to quit fucking judging myself by NT behavior standards already. It's like a cat hating herself for not barking. It took me until (probably more than) half my life was gone before I even knew I needed to know any of this. Nobody should have to be in the pitch dark like I was.
And if you are reading this and chastising yourself for not having known about all this stuff until now...please. No need to guilt-trip yourself on my behalf; I didn't know any of it until I was diagnosed, either. I assumed what many people did, that those kooky, lovable-at-a-distance aspies were okay, to a point, because we like things like MacBooks and lightbulbs and other stuff they invent...but we really need a cure for "real autism." It didn't occur to me that saying "we don't want to be cured, we want to be understood" did NOT equal, "we want your kids to bang their heads on the floor and eat their own shit forever." Working on curbing self-injurious and other-injurious thought and behavior patterns is a very, very different thing from doing the whole Zombie Brain Replacement Trip.
Have I let go of normalcy fetishism myself, completely? I'd have to say, probably not. I still have to remind myself when I'm measuring myself against NT people unfairly. I still have to remind myself there's a higher reason I don't "fit," and not just so "normal" people can have something to point and laugh at. And I'm one of the ones who has it relatively easy. All *I* have to worry about is being socially snubbed and forced to work at jobs beneath my talent and skill level; I probably won't be arrested or followed by cops or beaten up on the street or thrown off public transit or involuntarily institutionalized for my aspiehood the way I might be if I were more "obviously autistic." That shit is still happening to autistic people today, right now, and nobody has to punch or kick or bite or throw or even threaten anyone to draw that kind of unwanted attention. All it takes is one sound, one gesture, one facial expression, to go over the line.
So if nothing else, since it's a lot easier for me to get motivated to do something for someone else than it is to do it for me, I ought to bag this normalcy fetishism thing for their sakes. And for everyone who gets harassed and terrorized for being "different" in any other way.
But really, I should do it for me, too.