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Fever Dreams and Philosophical Musings

Last night, I fell asleep with a mild fever. My life chased me into my dreams.

***
In my dream, my client breaks something while I struggle to help his mother in the kitchen. His ABA team makes him stay up all night cleaning, and in the morning a troop of therapists convenes to discuss how he needs even more ABA. I’ve met many of them before, but I’m having trouble telling them apart, and can’t decide which of them might be sympathetic to my objections.

I argue passionately for less ABA, more communication training. A supervisor sneeringly asks if I mean that faked “facilitated communication” nonsense. The scientists in the room shake their heads sadly. I respond that RPM leads to completely independent typing– look it up! I also point out that a lot of different things fall under the category of “facilitated communication,” mentioning a video I’ve seen in which the only “facilitation” necessary is a gentle hand on the back of the person typing. You can’t control what someone types that way, I insist– just try it! I volunteer to type while a scientist tries to control my typing with a hand on my shoulder. She cheats abominably, but still can’t force me to type what she wants.

The room grows fuller, as adults with physical disabilities arrive to make the point that being a disabled adult is not a horrible sentence. Almost every hand in the room is raised with points to make, and I have more to say but despair of being called on any time in the next hour…
***

Yesterday, in my real life, an ABA tech mentioned children who were getting 40 hours a week, plus other therapies.

I asked if she didn’t find that tragically sad– the idea of small children having to work more than 40 hours a week. She said she’d rather they had to do 40 hours a week now, and grow up to be functional members of society. (There was a time when I would have agreed with her. The ABA industry mixes up some strong Kool-Aid.)

I didn’t have a way to put my disagreements into words then– there were so many of them crowding my brain. I think I can do so now, though,

1) False dichotomy. There is plenty of evidence (some of it even in ABA studies) that ABA is neither necessary or sufficient for independent adulthood. In less technical terms: Some kids get lots of ABA and grow up to be independent adults. Some kids get lots of ABA and do not grow up to be independent adults. Some kids get no ABA and do grow up to be independent adults.

2) If you’re going to argue that ABA at least gives a better chance that the kid will grow up to be an independent adult, you’ll have to show me some darn good math. You’ll also have to take into account that scientific studies on autistic kids who grow up without ABA barely exist at all, and you can’t make a logical argument that one condition is better than another when you’ve only researched one of the two.

3) I’m also going to lay down some serious objections to the idea that a person needs to be a “functional member of society” in order to have a valuable and meaningful life. There are many people in my life who have inspired me, made my life better, or loved me, or who I have loved. None of those things has ever hinged on whether or not the person could earn a living, speak verbally, live independently, or pass as “normal.”

4) Even if I accepted the premise that ABA=independent adulthood, I would still object. Because, “functionality” at what price? The price of a childhood? An individual’s personality? Their self-esteem? Their happiness? I would not sacrifice any one of those things, and I have known and read about autistic adults who believe that ABA stole those things from them. That alone should give anyone pause– and I do think that if most parents and therapists and ABA techs were truly aware that this was the potential trade-off, they’d hesitate, too.

There’s more to becoming a well-rounded adult human being than learning to sit still or tie one’s own shoes or participate in social niceties. There’s emotional development, and I believe that childhood– an unfettered, exploratory, play-filled childhood– is an integral and irreplaceable part of that development. For counterexamples, look at the emotional damage done to children who lost their childhoods too early– to abuse, to war, to parental drug abuse, to any of the things that make children grow up too fast. There are an uncanny number of similarities between adults from abusive childhoods and adult autistics– and all too often, those are one and the same. And frequently, that abuse has, at least in part, taken the form of a relentless battle on the part of adults to turn the autistic child into something they are not and can never be– a non-autistic adult.

So, if those are my options, I will happily volunteer to change an autistic person’s diaper every day for the rest of my life, or cook their meals, do their shopping, help them cross the street, or whatever other “functional adult” tasks they can’t do alone. Because I love the children I work with, exactly the way they are. And while I do want to help them acquire as many skills as possible, I wouldn’t do it at the price of changing who they are, losing their sense of fun and humor, or making them feel that they aren’t good enough, or teaching them that behavioral control is more important than their comfort, their safety, their right to communicate naturally, and their happiness.

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Somewhat Self-Indulgent Philosophical Musings on Passing for Abnormal

January 15, 2013 Leave a comment

[an essay x-posted from my personal blog]

I’m an odd sort of chameleon. I don’t fit in well with “normal” people, particularly not “normal Americans,” and while I can fake it much better now than I could as a child or teen, I find it exhausting to do so for more than a few hours at a time, and depending on my mood, I either do so purely to amuse myself or I simply don’t bother at all. But I can fit in with many other crowds, even some that I’m really not sure I belong to at all. As much as I mock the Western cultural obsession with Individuality and Self and Identity, I admit to having my own passion for eccentricity, or at least the appearance thereof.

Early in life, I was aware that my peers considered me “weird,” and that adults used the more polite term “unique” about me to mean essentially the same thing. I was not always weird in good ways, either– I was a self-focused, head-in-the-clouds, wool-gathering dreamer, an oddball who was largely unaware of most of the rest of the world and had little interest in understanding anything outside of fantasy and science fiction. Part of this was thanks to my mother, herself very much and iconoclast and idealist, who brought me up in a house with many books but almost no mass media– and by that I mean TV, radio, magazines, newspapers, brand-name anything, packages with ads on them– really, an environment almost completely isolated from current American culture. I could easily have picked such things up from peers and other sources, I suppose, but it never really occurred to me to want to do so. Through at least middle school, I didn’t really know who the Smurfs were, who was President or why it mattered, what “cable TV” entailed, that racism still existed outside history books, or what Froot Loops cereal tasted like.

But I digress (another thing I’ve done well my entire life). Being a social outcast was painful, but I also quickly made my strangeness a matter of personal pride. By the time I was a teenager, I had a major chip on my shoulder about being Different. I went through phases that were probably typical then and are even more so now– I practiced pagan “magic” (with my New Age mother’s full approval, which made it less a rebellion for me than for most teens), wore lots of black (granted, I worked stage crew at my high school, so half the time this was required anyway) and called myself a Goth (by which I meant I burned black candles as well. If I’d had the money to spend, I probably also would have shopped at “Hot Topic,” which was still a relatively small chain that mostly sold black clothing and pentagram necklaces). I handled my extreme anxiety and probably early stages of bipolar disorder by deciding I had multiple personalities and dividing aspects of my life up among various “characters” in my mind (an idea I got from a trashy and certainly faked biography of a girl whose mind shattered due to abuse by a satanic cult). And while most traces of these phases are far behind me, I have continued over the years to deliberately cultivate eclectic interests, hobbies, styles of self-expression, and even labels for who and what I am. And I have mourned the mainstreaming of the identities Goth and especially Geek, which now mean much less selectively strange crowds than they used to. I have always had a streak of snobbery in me, no matter what groups I selected to frequent.

I never got over the need to be Different, but part of me began to worry that I was faking it to some extent. I defined myself early on as bisexual, which I have since revised to pansexual/sapiosexual (when I bother to define my sexuality at all), but the truth is that I have dated only men and had most of my sexual experiences with men as well. Why do I find it impossible, then, to consider that I might be simply heterosexual? “Too limiting,” I tell myself, but while it’s true that I’ve found a number of women attractive over the years, I can’t help wondering if my unwillingness to call myself “straight” comes down more simply to a prejudice against belonging to the majority in any way that I don’t have to. Does being straight just lack the outcast chic to which I’m so attached? (“Some of my best friends are straight!” says a mocking voice in the back of my mind). And yet here I am sometimes rolling my eyes at other people who are so focused on chasing down, or inventing, the exact and complex terms that define how they feel about their gender and sexual identity that I get tongue-tied in a vat of alphabet soup acronyms and unpronounceable preferred personal precarious gender pronouns and start to wonder why we can’t all just call ourselves Human Beings and leave it at that.

(Aside: it’s a fine line to walk. I’m all for calling people by words that don’t hurt them, but having to learn new vocabularies on a regular basis makes me keenly aware of what a friend refers to as “the euphemism treadmill.” Words have power, but changing terminology doesn’t change peoples’ minds, it just allows us to temporarily escape the vast amounts of negative baggage that certain words have accumulated in favor of ones that are not yet so sullied. I try to call people by the words they prefer because respecting people’s preferences shows just that– respect– not because I actually believe, usually, that one word has some inherent advantage over another or is in any way a more accurate description.)

But I think that ultimately I aligned myself so strongly with the Queer community, and other communities that followed, primarily because I felt that these were people who understood– understood what it was like to be Different, and Outside, and Looked Down On. They understood what it was like to be me, and so that must mean that I was one of them.

And here is where I run into questioning myself again. Because I keep adding myself to groups for exactly that reason– because they seem to be “different” like me, and I assume that therefore I am, like them, a queer person, a geek, a demi-goth, a Jew (ethnicity, not religion, but honestly I’m not much of a cultural Jew either), kinky (somewhat), a person with disabilities, a non-neurotypical, an academic, an artist, a bookworm, a secular humanist, an atheist, an activist… Some of these identities seem fairly frivolous; others are deeply defining. But they all have something else in common besides my adherence to them; at some point, for each of them, I’ve felt like a fraud. I wonder if I only define myself as such because my friends do. I wonder if I take on the trappings of this identity to fit in with whatever crowd I currently spend time with. I worry that I’m not just mimicking someone else’s experience, but actually appropriating it. This isn’t always a big deal. Who cares if I put on a beret and start calling myself an artiste with the accent on the second syllable? No one, or at least no one should. But when I label myself as part of, or even associated with, a marginalized group, that’s when I start getting uncomfortable. Have I been mocked and othered in my life? Sure. I’ll bet you most people have, at some point. Do I face the kind of prejudice others in my self-identified demographic do? Generally not. Sure, I’ve gotten the odd crack about how I must be good with money (I’m not), a few nasty faces at my stated sexual preferences (but never from anyone whose opinion I cared about), a lot of hurtful remarks about disabilities I have as well as those I don’t…. BUT. I can pass for normal. I can hide any of these identities when they don’t work for me. I’ve picked up autistic-style flapping when happy or excited or anxious the same way I’d pick up any other slang from friends I hang out with, and I’m good enough at it that often autistic people think I’m on the spectrum (which I take as a compliment). I like being included in autistic circles; I feel good there. But I can also refrain from “acting autistic” just as easily, and most of the time I deliberately choose not to, to stim in public and without shame or self-consciousness, in part as my own form of protest against the fact that these things are not always socially acceptable (and they should be). But I might choose not do so in a job interview, and that gives me a privilege I know not all my neuro-atypical friends have. I often get overwhelmed by crowds and noises, but I can pass that off easily enough as social anxiety or something else relatively mainstream, and it isn’t constant enough to really interfere with my life. Heck, I even managed to work at a mall for a few years. My executive functioning skills are lousy, but I can pass those deficits off as quirks, and I’ve never truly been made to feel ashamed or defective because of them. When I recently found myself at Home Depot accidentally wearing a pair of fuzzy blue house slippers, I was primarily amused at myself, and a little bit pleased that I’m already showing signs of becoming a Mad Scientist or Absentminded Professor (archetypes I’ve admired since early childhood. If it weren’t for my allergies, I’d also be looking forward to becoming a Crazy Cat Lady too). I skate along being eccentric without having to worry, or at least not too much, about being so functionally impaired that I do dangerous things like leaving the stove on all night and burning down the house.

Is it right for me to enjoy the advantages of these identities without experiencing their disadvantages? To stand in the margins without being marginalized? Is my concern about this itself merely an intellectually masturbatory expression of something analogous to White Guilt? (for which I have little patience. I do believe that being born racially and culturally privileged gives me something of a moral obligation to try to share my advantages with others who lack them, but the idea of beating myself up over a roll of life’s situational dice strikes me as outright absurd). Or is my choice to stand with those I can relate to primarily a good thing? A friend, who blogs at thethirdglance.wordpress.com, came out to me very early in our friendship as autistic, despite hiding that identity from almost all her classmates, co-workers, and even family members. I asked her, much later, why she was willing to tell me so easily when she’s so reluctant to tell others. “I don’t know,” she said, “I just knew right away that you were someone I could trust.” So there’s a positive thing. I think that I manage to be a good member of the communities I join, even when I don’t share all the experiences of the other members. I think I am aware enough of my position as a partial outsider among other outsiders to listen to the perspectives of those who are more deeply entrenched in the experience. And I think that, just as I benefit from feeling at home among others who live in mainstream society’s margins, I help others to feel at home with and accepted by me. This essay wound up going differently than I expected it to, but somehow I think I said the things that need saying. Here’s hoping I still feel that way when I reread it later. 🙂