When the #Autistic medical model has gone the way of the dinosaurs…

dialog between mother and autistic daughter explaining the old medical model of autism

Fantastic post from Luke Beardon.

HELLO MUMMY – A (FICTITIOUS) CONVERSATION FROM THE FUTURE

Girl: Hello Mummy.

Mother: Hello Darling.

Girl: Mummy, I want to ask you some questions.

Mother: Ok – fire away!

[Pause]
[Pause]

Girl: Fire away?

Mother: Sorry Darling, silly Mummy. I meant please do ask your questions.

Read the full (most excellent) post here.


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“Old School” Autism Adjustment

school building in snow on film strip

I’ve been thinking a lot lately about how I structure my life. And I’ve been thinking about how I handle myself, regardless of what comes along.

Because I do. Of course, it falls down, here and there. Of course it does. I’m human. I have finite resources, and like a high-performance race car, I need to pull off the track, every so many revolutions, and get tuned up. I’m no different than a Formula-One race car, in that respect. High-performance vehicles, including my body and brain, need more specialized care on a more frequent basis.

That doesn’t make me disabled. It makes me high-performance with specific needs.

Interestingly, nobody’s calling F-1 race cars “disabled” because their tires need to be changed more frequently than your everyday family sedan.

Please.

And here’s where my New Year starts out a little early. I’ve got this new resolution to really “reframe” (much as I hate that word) the way I talk about Autism. Hmm… let me think of a much better word than “reframe” — okay, let’s use “redefine”. Because that’s essentially what I’m doing. The words I use add shape and texture to the concept of my Autism, and by using different words and different mindsets to talk about that central part of me, I can literally change the quality of my life and the thoughts/concepts that guide it.

If others “get it”, then great. If my example helps them to redefine their own experience (whether it’s Autistic or not) and create a more self-aware and self-directed way of life that’s got less pain and suffering, then great. But my redefinition isn’t for the sake of anyone else. It’s for my sake. I am Autistic, after all. 😉

One thing driving this shift is my experience of looking through my library of images I’ve used in blog posts over the past year or so. I’ve been actively blogging here for nearly two years. I started this blog back in June, 2008, then had to tend to other things, and I came back in February, 2016. Some days, it seems like a lot longer than two years, and other days, it seems a lot shorter.

I’m alexithymic like that.

Anyway, I noticed that so-so many of my images have really negative connotations for me. There’s a lot of suffering archived in my media library. And while searching in vain for some really uplifting images (or just some pragmatically strength-inspiring pics), I came up with nothing, time and time again.

sunflower

Oh, here and there, I found an image or two. But on the whole, things look pretty grim. I’d have to say the ratio of gloomy:gleeful is about 9.24:1.

So, that’s gotta change.

I’ve talked before about how we need more Autistic Joy, and I still believe that. But it’s not enough to mention it now and then in a blog post. It’s got to be the main theme in all my blog posts. And if not outright joy, then at least some discussion of how I’m managing my Autistic life — and doing it successfully.

Oddly, I feel as though I may be failing “the cause” as I write this. Because Autistic people are supposed to get support and resources for our difficulties. Yes, when appropriate, I absolutely believe that. If I am completely and totally unable to help myself, then I do need extra help.

The thing is, I’m rarely, if ever, completely and totally unable to help myself. I may have lost track of all the ways my system was being slowly eroded by circumstances beyond my control. I may have allowed myself become so run-down that I lost my normal capabilities. I may have gotten so wrapped up in what I was doing, I forgot to eat, drink, sleep, and empty my bladder, and that’s making my life a lot more “interesting” than I’d like it, as I gingerly wobble across the house to get to the bathroom.

But those things are on me. I may be Autistic, but I’ve helped to create those conditions. I didn’t properly manage my life — which I’m perfectly capable of doing. I didn’t take good care of myself — which I know I need to do, so what’s my excuse? I didn’t set a timer (which I know I sometimes need) to eat, drink, sleep, and keep track of my bladder’s state. Self-created suffering is not the sort of thing I can use to demand more services for my situation.

It may sound like I’m being too hard on myself, but I’m not. I was raised to know better, and to do better. And I was raised in a world where I was expected to take responsibility for myself, even for the times when I struggle. Especially for the times when I struggle. Because everyone is dealing with something pretty Big, and they don’t have extra time and attention to devote to my own self-created issues.

If I’m capable of discerning my difficulties (which I am, more than anyone else), and I’m able to learn from my experiences (which I can, and do, regularly), then it’s my responsibility to make provisions for my situation. Manage my issues. Restructure my life so that I’m not suffering, if it can at all be prevented. And make the damn’ effort to not get myself into taxing situations that I know, from experience, are going to make life worse for me — and everyone around me.

Yeah, I’m old school. That’s for certain. My approach isn’t for everyone, but it most certainly is for me. And as one contingent of Autistic folks focuses on the disability side of things, I’m focusing on the “Autistic ability” side of things — because our lives are different and shouldn’t be expected to be exactly the same. And because I’ve figured out how to live my life as an actually successful (and yes, I’m using the word in its true sense) Autistic adult. I was as a successful Autistic child, teen, and young adult. I just didn’t realize it, thank you alexithymia. Turns out, the very thing that makes it possible for me to function effectively in situations that freak other people out, actually hides that effectiveness from the rest of me. So, I’m a heck of a lot more successful and happy and content than I realize.

Damn… I need to write a whole post about that, sometime. Or maybe I already have… Anyway, that’s another idea for another day.

So, with the New Year just around the corner, it’s time to get some more positive pictures in my media library. And get some more pro-active, pro-Autism posts in my blog. Staying stuck in how horrible everything is… well, that doesn’t serve anyone. Least of all me.


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What a delightful week it’s been! Blissfully quiet

And I’m pretty wiped out. I’ve had most of the past week to just do the things I like to do, in the way I like to do them. Which means, a lot of sitting. And a lot of isolating. And a lot of reading and writing and researching and pulling out textbooks, thumbing through them and crying, “Ah-ha!” when I find the passage(s) I’m looking for.

I’ve been immersed in a certain mode of thought I don’t have the luxury for, in my regular everyday working life — where my co-workers are suburban parents who just want to make enough money to put their kids through school and/or climb high enough on the corporate ladder where they can vex more people than those who vex them.

It’s been so much fun, being away from that whole scene, that major drain of a scene. And while I do look forward to getting back to my routine, I don’t look forward to dealing with those people again. It’s been a real pleasure, not having to constantly come to terms with the mixture of sadness, pity, compassion, frustration, and intermittent admiration, that I cycle through each day.

But I have to say, I am pretty tired.

It takes a lot out of me, trying to catch up with myself and the kind of life I want to lead, when I have such limited opportunity. It kind of works against me. Except, it’s my choice, and I can do what I please. And in the end, I’ve got a lot of satisfaction out of the whole deal.

Tomorrow I head back into the jungle.

Wish me luck.

Of #autism and naming and claiming

Hanne Blank offers a helpful way into this discussion in her book Straight: The Surprisingly Short History of Heterosexuality with an analogy from natural history. In 2007, the International Institute for Species Exploration listed the fish Electrolux addisoni as one of the year’s “top 10 new species.” But of course, the species didn’t suddenly spring into existence 10 years ago – that’s just when it was discovered and scientifically named. As Blank concludes: “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned Electrolux from a thing that just was … into a thing that was known.”
Hanne Blank offers a helpful way into this discussion in her book Straight: The Surprisingly Short History of Heterosexuality with an analogy from natural history. In 2007, the International Institute for Species Exploration listed the fish Electrolux addisoni as one of the year’s “top 10 new species.” But of course, the species didn’t suddenly spring into existence 10 years ago – that’s just when it was discovered and scientifically named. As Blank concludes: “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned Electrolux from a thing that just was … into a thing that was known.”

I just found this, following my commentary from the other week about how naming a thing doesn’t mean you’ve invented it.

And we could say exactly the same thing about autism, with a few updates:

Autism is one of the year’s “top 10 new epidemics.” But of course, autism didn’t suddenly spring into existence 70 years ago – that’s just when it was discovered and scientifically named. . . . “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned autism from a thing that just was … into a thing that was studied.”

Not to keep hammering on this pesky “nail”, but it matters.

It matters a lot.

Welcome to the intellectual sinkhole – arguing about the validity of #autism #diagnosis

sinkhole in pavement with cracked asphalt around it
Well, that was exciting. I guess. Over the past couple of days, yet another drama scene erupted on Twitter with people arguing about whether self-diagnosis is valid for autistics.

I mean, seriously, this is such a poor use of time.

Not because affirming the validity of others’ identity is pointless. Rather, because getting all spun up over it is. When we get all worked up with fight-flight responses, our ability to think clearly leaves the building. That’s how we’re built. It’s not even a thing you can dispute. It happens. Higher reasoning gets switched off by forces beyond our control — which kick in prior to conscious thought. By the time our systems have figured out that it’s happening, it’s already been done.

And we’ve probably said or done something we wouldn’t have done otherwise. If we’d had our wits about us and had taken a deep breath and gotten our sympathetic nervous systems calmed down, the tone policing wouldn’t have happened. The swears wouldn’t have unleashed. The accusations (some of them pretty accurate, but not the most kind) wouldn’t have flown.

And the argument might have remained a civil discussion.

Not yesterday, tho’. Nope. Not at all.

As a result, I muted a handful of people whom I’ve followed for quite some time. I didn’t block them, just muted them. Needed a break. Needed to not have to listen to them impose their versions of things on me, as though their version is the only thing that matters. I tried reasoning. And that got me nowhere.

Because they’d already been hijacked, I’m thinkin’. They weren’t even there anymore — just a bundle of reactions and an overwhelming need to own the Whole Truth About Autism.

Sigh.

Which brings me to thinking about community. People seem to think that community is a warm-fuzzy-accepting place, where you’re accepted for who you are. Especially autistic community. After all, we’ve wandered — some of us for years, even decades — in search of our kind, our tribe. And when we find others like us, it’s a huge relief. We feel like we’re home. The “honeymoon” commences.

Then the community shows up.

And it’s not pretty.

For the record, I was raised in community — not a commune or kibbutz, but a community of faith and subculture that was tight-knit and well-defined and highly cohesive over generations. To this day, I know that if I ever fall on hard times, I can always — always — look to that community for help and assistance. Because we’re connected in profound, enduring ways that have withstood the ravages of centuries of religious persecution and opposition from the rest of the “world”. Those connections involve a whole lot of extended blood ties, as well as regular participation in shared activities. Church services. Family reunions. Weddings. Funerals. Baptisms. Holiness retreats. Potlucks. I’ve eaten more sloppy joes, coleslaw, and baked creamed corn than I care to think about. And I can toss a mean horseshoe.

I’ve also born the brunt of constant social violence, my entire life in that community. Continuous demands and requirements were forced on me, as a regular part of being part of the community. A lot of it was to enforce the appearance of neurotypicality — wear the right clothing, interact in the right ways, participate in the right activities, have the right interests, talk about the right things. I’m not putting the word “right” in quotes, because within that context, those were the right things. Everything other than the standard-issue, community-approved attire, behavior, activities, interests… those things were threats to the connection I had to everyone around me.

And they were not allowed.

Period.

If you did not comply, you were Out. And I mean Out. A lot of people left, over the years. I was one of those who split as soon as I could do so safely. I quit going to church regularly at 16. And once away at university when I was 18, I don’t think I went back… for years. I even broke from my family of origin for a number of years, just to get my bearings in the world. Community life had done its best to suck the independence and authenticity out of me, and when it didn’t succeed, it was vicious. Brutal. And not only to me, but to my extended family, as well.

When you live in that kind of community, if you screw up, your parents suffer as a result. And your siblings. And your aunts and uncles, your cousins, your grandparents. Anybody in your life who didn’t manage to steer you back to the straight-and-narrow was charged as an accessory to the crime of your “waywardness”. Everybody hoped, of course, you’d come home like that prodigal son. But in the meantime, if you weren’t around to pay for your sins, someone else would be made to pay.

So, when I hear people lauding the idea of autistic community, I have to smile. It’s a crooked, sideways smile that doesn’t reach the whole way across my face. Because to me, community doesn’t imply the same things it apparently does to others. And I wonder if people are genuinely aware of what’s truly required for community to thrive and survive? It’s not just about bringing people in and accepting them. It’s also about keeping certain types of people (and behavior) out, and establishing what’s not acceptable under any circumstances.

Community can be brutal. There’s just no two ways about it. And if we’re to truly build a new type of connection with others in an ever-expanding network of support for our autistic kin, we need to face that fact — and decide what we’re going to do about it.

Personally, I think we can use our autistic minds and perspectives to build something very different from the type of “neurotypical holodeck” I grew up in. That world was spawned in the trauma of 13th century western Europe. And it’s dragged a lot of pain and suffering along with it into the 21st century. There’s no need for us to replicate that. Yes, trauma and drama are very much a part of our autistic experience, but we’ve got a lot of very creative thinkers in our midst, and we’ve got a huge range of abilities and interests and capabilities and voices who can contribute to the discussion.

Provided we can actually listen to each other.

Which is an open question in my mind, to be completely honest.

Anyway, I’ve been thinking that rather than having a monolithic overall “autistic community” per se, autistic community might actually consist of different “pods” of interconnected folks who share deep connections in specific areas. And it may actually be less of a noun than a verb. Community is something we do, as well as something we have. It’s a living, breathing, thrashing thing/process.

And I’m building my own community, as I go, finding my own “tribelet” where I can. As for the larger community, it can be a bit of a trash fire at times, but I don’t have to engage with it.

It’s all an adventure. It’s all an unfolding process.

That’s half the fun.

And half the pain.

Of #autism and tardigrades – does naming a thing confer ownership? #SelfDXIsValid

tardigrade

And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

Genesis 1:26 (KJV)

And Adam gave names to all cattle, and to the fowl of the air, and to every beast of the field;

Genesis 2:20 (KJV)

So, God creates Adam (man) and awards him dominion over all the creatures of the earth. Over “every creeping thing that creepeth upon the earth”. And God also confers to Adam the right to name all the creatures. Naming, ownership and domination have gone hand-in-hand for an awful long time. And periodically, it rears its head in the autisphere in an almost predictable way.

Once again, the issue of whether autism “self-diagnosis” (self-DX) is valid, flares up on Twitter.

It’s the same discussion argument that keeps coming up, time and again. I’ve had my own back-and-forth with people who started out wondering aloud if their opposition to self-DX might be their black-and-white thinking acting up again.

And I, in my apparently amazing Svengali-like power, have managed to so sufficiently piss them off, that they decide… No, it’s not really their admitted black-and-white thinking blocking them. Self-DX is NOT valid, they say. Impossible!

I always have to wonder about people who feel entitled to judge and police others. I understand the desire for intellectual purity and a clear-cut set of guidelines that clearly demarcates the “autism community” (such as it is). I understand the need for clarity, for standards. I understand the attractiveness of having gatekeepers blocking the intrusion of Munchhausen-esque pretenders who are looking for attention and a little drama. And I understand the need to establish official boundaries around who lays claim to scarce resources (tho’ on that last point, let me be absolutely clear that scarcity of resources is a result of political choices, and there are ve$ted interests who have a $take in awarding and denying services, so that last point is a jagged little bone that tends to get stuck in my craw).

Here’s the thing, tho’… Autism isn’t something that any one scientist (or a whole gaggle of them) invented. It’s something they identified in conceptual terms they could clearly communicate to the rest of the world, and subsequently diagnose, treat, and otherwise establish dominion over those whom they diagnosed.

They may have invented the conceptual framework for thinking about us and identifying where we fit in the world, but they didn’t friggin’ invent autism. Kanner didn’t. Asperger didn’t. Bleuler didn’t. They just noticed it. Documented it. Wrote shit down about it, and went on to science (and in some cases commercialize) the heck out of it.

And because they didn’t invent autism (I don’t care what Dr. Grinker says about it), they don’t have the right or the ability to say, one way or another, whether a person is autistic or not. God knows, they’ve fucked up often enough to call their expertise into serious question. If those same scientists drove cars the way they identify autism, they’d all have lost their licenses years ago. Or they’d be doing hard time for having run so many people over. Repeat offenders, many of them. Producing shoddy research. Misdiagnosing or denying autism diagnoses to people in genuine need of assistance. Playing gatekeeper to an amusement park full of rides that lock you into the seat permanently and spin till you’re nauseous and throw up all over yourself and everyone around you.

And yet, magically, they still get to keep their credentials. They do their shoddy research. They do their awful assessments. They deny and screw up and never think twice about the effect they’re having on others.

But, they’re the “experts”… right?

Here’s the thing that completely baffles me, when it comes to mental health folks and scientist-like individuals who screw up the autism thing. It seems to me (from the outside, admittedly), like they’re constantly covering for each other. And rather than taking each other to task, they gloss over the omissions and commissions with some non-committal “Well, there’s still a lot we have to learn” or somesuch. This is completely inconsistent with the behavior I’ve observed in mental health professionals I know (and I know a lot), who are always at the ready, quick to jump on each other and call each other out and warn you away from such-and-such a therapist, in matters like unresolved trauma, family dynamics, couples therapy, and any number of other hot-button psychotherapeutic topics.

And yet, when it comes to autism… silence. No judgement. Not even a constructively critical peep. Nope. It’s all “Well, nobody but a professional can actually diagnose you as autistic. That’s just how it is. Oh, and here’s my card…”

How does that work exactly? Seems that autism is good business, all around, and everybody’s looking to cash in on it. It’s just autism, right? And the people who are harmed by the most enterprising types, are the ones least likely to protest, to defend themselves, to make a stink.

Yeah…

So, about those tardigrades — teeny, tiny little micro-animals that can survive in outer space, as well as impossibly harsh conditions (like, a degree above absolute zero)… Unless you have an extremely powerful microscope, you can’t see them. And until we had the equipment, they might as well have not even existed. There’s a whole lot of stuff (animals, planets, star systems, chemicals) which we’ve only recently discovered in the past 100 years. It’s safe to say, those things have existed throughout time — and many will continue to exist, long after we’re gone. Just because someone noticed they were there, gave them names, and figured out how to study them, doesn’t give those people ownership of them. Nor does it mean they invented them.

They simply noticed they were there and put words to their observations.

Kind of like autism.

Just without the dehumanization that comes with all the Theory of Mind and “locked in” bullsh*t.

So, the next time somebody tells you that Kanner or Asperger “invented” autism, or behind-the-times “experts” are the only ones who are qualified to say you’re autistic, I invite you to join me in a hearty, boisterous laugh.

And then just walk away.

#Autistic Day After – Roaming around the house with my headphones on

field with blue sky and clouds overhead

I had a very productive day, yesterday. I did so much that I’d been wanting to do. I wrote some things I’m very happy with. I drove around and did my errands. Shopped. In more than one place. Even went into a big-box office supplies store and… browsed! Imagine that. Usually, the overhead lights and myriad choices keep me from getting anything other than what I specifically came to buy (and wrote down on my shopping list). But yesterday, I improvised. And I found some pretty cool stuff that I’ve been needing. Okay, so I also picked up a movable computer workstation, which I don’t have room for (yet) in my house. But it was a bargain! 75% off the normal list price! So, that was — intellectually speaking — a triumph.

I refuse to let the fact that I don’t actually need it, to deter me from my sense of victory. 😉

I got so much done — and these were important things I’d been delaying for far too long. Yep, I finally got the audio workstation up and running, and in far less time than I expected. I broke up the task into two separate sessions, and I kept at it, till I reached a satisfactory conclusion. I scrubbed the shower walls. I organized my study. I removed the stacks of books and papers from the folding table set up in the dining room, which had effectively turned it into an alternate workspace for me. My dining room is now — almost — a dining room. I added a lamp to my upstairs study, so I can now see what I’m doing. I threw away stuff — including leftover doo-dads from a job I left over 2 years ago. The bag had been sitting in my study (of course) the whole time, as though I wanted to hang onto the memories of that old job.

Note to self, those memories are flawed. It wasn’t that great of a position, and in the end, it probably set me back. It’s just your alexithymia messing with you again.

I got my power cord from work, so I can work from home tomorrow, and I figured out where and when I probably lost my old power cord. I bought myself a battery-operated, cordless weed trimmer, so I can edge back the encroaching growth that’s responding to all the rain we’ve had with an explosion of enthusiastic green. I love having it this lush, after years of too little rain. But I’m starting to feel hemmed in. Today, I’ll give the tool a try — after reading the instruction manual, of course. Don’t want to maim myself in the process, which I have a tendency to do.

I dropped something on my toe, and it’s bruised and painful. But it’s not swollen and I can move the toe, so I won’t be going to the emergency dept for it. I’ve had broken toes before, and I know what to do for it, if it is broken. I don’t think it is. My feet bruise easily, and it feels more like a bone bruise. I’ve had this lots of times. I’ll just follow the standard protocol. And avoid the hospital. By all means.

I handled yesterday like a total boss. Even when my plans got messed up, I adjusted. I pivoted. I adapted. And I had a nap in the afternoon, which was good. I had a nice balance, and at the end of it all, telling my partner about everything I did overwhelmed her. Just thinking about everything I did made her head spin — metaphorically, that is! 😉

Today, of course, I’m paying the price for my hyper-productive day. My right knee is sore, for some reason. My head feels like I’m underwater. I’m in a bit of a daze. And I’m going to do far less today, than I did yesterday. Fortunately, I can. Because I got so much done. Today, I can relax. A bit. Just let myself be.

The biggest news, I’m happy to report, is that I’ve given up.

As in, I’ve given up having a lot of attachment to outcomes, when it comes to other people. Things I undertake. Plans I have. Projects I’m pursuing. I’ve been far too attached to the idea of specific outcomes, specific reactions, specific progressions of what-happens-next. I’ve gotten all caught up in the hopes and fears and dreams of what-may-be… and it’s blocked me from really focusing on what’s in front of me. Having a specific outcome in mind has ironically kept me from actually achieving those things. I’ve gotten so twisted up in thinking things need to go A Certain Specific Way, that when they don’t go that way, I’ve suffered.

Lord, how I’ve suffered.

When someone doesn’t react / respond the way I was hoping (which has been happening a whole lot at work, lately), I spend way too much time ruminating over what I did wrong, what I can do differently, why they did what they did… and it’s never a productive use of time. My partner has been unpredicatable, lately, too. Some of her good friends are seriously ill. And the partner of one of her colleagues just died from complications due to a condition that my partner has – albeit in a much less severe form. Cue the anxiety. For good reason. And all the work I do to help assuage the fears and reassure her… well, it’s not doing that much good, these days.

When my plans fall through, when stuff happens that screws everything up that I’ve been working on (which is also happening at work a lot, lately), I take it personally and get all mortified about things not going the way I promised they would. I have to report on my progress to people, and it seems like in the past months, I end up having to back-track and revise my story, every week or so. It’s really distressing for me.

These are the things I’m giving up. Getting all invested in things turning out a certain way. Putting on pressure to get things to happen a certain way. Pushing and advocating and all that other crap, that I’m supposed to want to do, for the sake of personal productivity and effectiveness. Oh, sure, I’ll continue to do it all — I’ll put on a good show. But put my heart into it? Nope. I’m done with that.

Just like I’m done with getting all bent over crap I’m supposed to care deeply about. I don’t care deeply about so much of this neurotypical, mainstream B.S. that’s supposed to be so important to me. Who cares? Who the hell cares? I certainly don’t. And I’m not sure why anybody else cares, either, except maybe to fall in line with the rest of the crowd and feel like they belong.

So, what’s all this got to do with roaming around the house with my headphones on?

A lot.

I put a lot of myself into yesterday. I sank a lot of effort, a lot of attention, a lot of my coping skills into everything I did. That was mostly for everyone else’s sake, to be honest. For the sake of my obligations to work, to my partner, to the neighborhood, the town, etc. Today, I get to spend the day on myself. I do have some stuff I need to do later. But that’s later. Right now, I’ve got my headphones on, I’m wandering around, alternately staring out the back door at the bird feeder, and curled up on the living room couch reading Austin Shinn’s book A Flickering Life: A Memoir of Autism (which I’m really enjoying and marking up sections to comment on later). I’ll go out for a walk later, just take my time strolling up the road and back. Then I’ll have a nap. I think. That’ll give me time to recharge my internal batteries, so I can finish up the must-do stuff this afternoon.

But right now, it’s time to eat some cereal, wander around the house listening to music I love, and chill.

 


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What’s in a word? Of the semantic sense and sensibility of #autism

Loomes paper wordcloud

Gill Loomes was kind enough to forward me her paper It’s only words: a critical ‘insider’ perspective on the power of diagnosis in the construction of autistic social identity. I’ve been reading it – and re-reading it – over the past couple of days, and I’m finding (and re-finding) a lot of thought-provoking ideas therein.

Every autistic person seems to feel differently about their autistic identity. They can feel differently from others, as well as differently within themselves, from time to time. I know I do. I first self-identified (actually self-diagnosed, because in the spirit of diagnosis, I identif[-ied] the nature of (an illness or other problem) by examination of the symptoms. I looked at a whole array of symptoms I’d experienced and struggled with over the years, and I used them to identify the nature of the problems I was experiencing in life.

Ironically — or perhaps quite logically — once I had a “diagnosis”, I gradually stopped needing one. How does that work? Well, once I had a thorough understanding of what made me “tick” (not in the stimmy way), what made things harder for me, what made things easier, my problems stopped being problems. And what sometimes felt like an illness actually led to a level of understanding that relieved — even prevented — so many of my symptoms.

And gradually, I’ve come around to feeling like I identify as autistic, more than I am diagnosed. I’m disinclined to the medical model — as useful as it was to me, once upon a time. — and I seem to be approaching a new juncture in my life. Much as Gill seems to be in hers:

I’ve spent years trying to find out more about this so that I could explain myself. I’ve worked so hard. I’ve studied. I’ve spoken. I’ve written and I’ve taught. But I’m tired of having to justify myself. I’m tired of fighting to explain that autistic women are different – different from other women, different from autistic men. I’m tired of trying to set myself apart by explanations that are unique to autism. I’m tired of it because it gives the words in my diagnosis, along with social understandings of autism, a power in my life that I’m sick of – all in the name of making me ‘other’.

Our differences are indeed our distinction. For good and for ill. And the words we use to describe ourselves have power. They are social currency – the meanings they convey and evolve are powerful agents of change. And from one culture to another, from one person to another, they can create different kinds of change. It’s all very complex. Dynamic. And yes, confusing.

One of the ways that I differ slightly from Ms. Loomes, is how power is perceived. I think my situation is very different from hers, because I’m not “out” as an autistic person. Just to my partner. Not to my extended family. Not to my workplace. Not even to my PCP/GP. Autism, for me, is a very personal thing — a phenomenon I don’t want to hand over to others for their interpretation, lest it be trampled like pearls before swine. People just don’t “get” autism. They have their ideas about me. I really don’t feel the need to get into it with them — perhaps because I sense the following will happen with me:

I’m tired of it because I believe strongly that this power comes not from the autism itself, but from a society that cannot tolerate difference, and that especially cannot tolerate unnamed difference. If you can’t find the words to articulate your difference – and the hurt, the brokenness and the vulnerability that it causes, then those things can’t exist – you are told that you are ‘normal’ or that, ‘we all feel that’. Well I’m fed up of this power – the power of a diagnostic label to account for, and to own, my inability to conform.

Because I haven’t shared my own diagnostic label, the society I inhabit doesn’t have that same power over me. I live in a country which violently opposes difference, punishes (sometimes kills) people who don’t conform and comply, and cannot tolerate any nay-sayers in this land of Golden Opportunity. God forbid I should be less than enthusiastic about my chances in life. God forbid I should be honest about my misgivings about the future of this nation, this culture. God forbid I should be anything less than proactive and positive and can-do in every damn’ thing I undertake. The forced optimism is tiresome and tiring. And autism is the ultimate “downer”.

What? Me autistic?! How could that be?

I find myself extraordinarily weary today. It’s been a long week, and I’m cranky. I’m tired of my job. I’m tired of my life. I’m tired of all the many and varied ways my life is more difficult than it needs to be. It’s a holiday weekend, but it doesn’t feel like a holiday. It just feels long. And there will be fireworks on Monday night, which I am dreading. I hate fireworks. Always have. They’re pretty, sure. But all that noise. And the crowds. And the change to my routine. Even if I stay home, I’ll still be “treated” to an intermittent barrage of bangs and pops and crackles and booms. It’s inescapable, this weekend. And I just now realized how it’s weighing on me.

So… earplugs.

But enough of my digression. Back to topic…

The power that words have is considerable. In the wrong hands/mouths/minds, they can wreak havoc.

how all-consuming this explanation (and one’s reliance upon it) can become. I’ve been so passionate about this idea. I am an autistic woman. I am not a woman with autism. Autism is a pervasive developmental difference and it affects every part of me. I don’t dispute this, but this is not where I suggest the problem lies. I argue that the problem lies not in the pervasiveness of autism in me as an individual, but in the pervasiveness of its use as an ‘explanation’ at the level of specific, observable behaviour – an account for everything that I am and everything that I do.

Melanie Yergeau talks about this in her paper  Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind. She talks about being disenfranchised from her own voice, being literally told that she wasn’t speaking for herself, articulating her own experiences.

Suddenly, the experts claimed, I wasn’t talking. God, no. “That’s your depression talking,” they explained. “That’s your autism talking. That’s your anxiety talking. Really, it’s anything but you talking.”

. . .

Regardless of what I said, it was my autism saying it. My body became site for ventriloquist rhetoric, words that never were. While conversing with the EMTs, desperate to appear sociable and “normal,” I found myself narrating my every anxious action with, “That was a pre-programmed response. That was a pre-programmed response.”

I do not know what they wrote in their charts. In my depressive moments, I tend to imagine that they mapped the ebbs and flows of my echolalia, in echolalia. “That’s just her autism talking,” the clipboard repeats, like a running toilet. “That’s just her autism talking, talking, talking. That’s just her—autism talking.”

When autism is considered a diagnostic category (which it is, according to the DSM-V and the ICD-10), it’s considered the domain of the professional class, a caste of conceptual overlords who may or may not deign to notice you, who may or may not dispense formal recognition upon you. I have the same issues with autism being in the DSM, as I had with homosexuality being listed (until 1973). It’s a difference, not necessarily a disorder or a disease. And yet, there it is — a condition, possibly co-morbid with a range of other issues… awaiting treatment.

It’s always problematic, when you hand over your self-definition to an official term-dispensing body of experts who work by committee and tend to change their minds from time to time. It puts you in a precarious position, and yet… For many of us, engaging with an amorphous diagnostic group-think entity is the first step towards getting a solid conceptual foothold in who we are, what makes us “tick”, what can help us “tick” differently — or perhaps stop some of the most bothersome ticking from even happening.

It’s also a first step towards securing a place in society. Especially societies which have low tolerance for divergence from their preferentially enforced norms. As Gill says about her own autism diagnosis:

I need this explanation because the world is unkind and does not tolerate difference. Anything that strays too far from ‘normal’ gets stamped on, unless it can account for itself and make itself legitimate – legitimate in terms that are acceptable to the social world. And so, my diagnosis takes on a social life of its own.

It’s a slippery slope, isn’t it? You need it, and then you struggle because of it. You want it, pursue it, and then can be used against you. But if you don’t have it, you run the risk of getting stamped on. And if you do have it, but you don’t tell others, you run that same risk.

Ultimately, it’s really up to each of us, how we engage with our identities, how we understand ourselves. How we navigate our social worlds. In the world I was raised in, nobody was really allowed to “use” disability — hidden or otherwise — to get accommodations. You sucked it up. You took a handful of pills. You did your duty and you did your job. If you died on the job, you were practically a saint. And if you sacrificed your own health and well-being for others (but still kept going, kept giving, kept suffering), you were given special consideration and held up as a shining example for all others to follow.

Chronic pain? Stop complaining. Everybody has pain.

Anxiety? We’ve got a religious denomination for that.

Digestion problems? Eat more of what’s bothering you, so you get used to it. Or, if you have to avoid certain foods, do so discretely. Don’t inconvenience others with your weakness.

Sickly? Fevered? If a handful of pills doesn’t fix it, remove yourself from polite society until you feel better. If you never feel better, we’ll arrange a nice burial for you.

In the context of today’s world, this all sounds cold and unfeeling, and yes — it is/was. There are still a lot of people who feel that way. That’s one of the reasons I don’t spend much time in that part of the world. That socio-cultural cocktail of religion, work, pills, and powering-through stopped working for me, decades ago.

That’s one of the big reasons I don’t discuss my autism with my family. In their minds, if you’re struggling enough to talk about it, you must really be struggling. So much so, that you’re just a little less than human. I worry about this happening:

the use of my autism as a pervasive explanation of who I am and what I do robs me of agency, of ownership, and ultimately of the
chance to learn and grow. In the case of pain, or of failure, we feel a need to name these – to account for them and to attribute them. Therefore, in moments of worry about (potential) failure, my story becomes:

“Autistics can’t do that. My autism makes that impossible for me.”

I think this world has a long way to go, before people with significant differences are actually accepted and treated with the same levels of equanimitous calm as standard-issue hyper-normative individuals. People have a strange way of limiting you, when they slap a label on you. And it all depends on their interpretation of the label. Of course, some labels can be empowering — granting you folk hero status. But in the end, these are essentially conceptual shortcuts, containers for collections of complex concepts which vary in significance from person to person.

The real question, in my mind, is what we do with our labels, and how we engage with them. We can’t help but use them. We can’t help but think about them. But what else can we do with them? Certainly more than we have, thus far.

… if you want to help those autistic people who are in pain, from failing according to society’s expectations, you can’t just do this by finding out more about autism in order to give words to our failure to conform, so that we are ‘off the hook’ (though still ‘different’, ‘other’, ‘broken’). You need to – we need to work to make the world a more comfortable, more  loving place for everyone to fail according to the harshness of society’s expectations and demands, and to learn from those failures and hurts (because, apart from anything, one of the best ways to make me comfortable with failure is to enable me to see others very obviously failing and recovering. Imitation is one of my learned skills – let me use it!). Otherwise we can’t grow – and we in turn cannot shape society.

I’ve personally seen how sharing my own failures and triumphs (in spite of those failures) has done others good. It’s mostly in my real life — attending meetings where I had to take full public responsibility for screwing up certain important tasks that messed up an overall project, then worked overtime to make up for it… admitting that I forgot something important… ‘fessing up to other various royal screw-ups that I was sure would alienate everyone around me, but somehow ended up endearing me to them all the more… At their core, people understand that others mess up. they can relate to people who do. And they look up to those who can recover and move forward.

But if I chalked up my failings to autism (which always plays a role)? What then? I’m none too sure that the otherwise kindhearted and compassionate folks who forgive me now for my apparently neurotypical infractions, would be comfortable with my autistic shortcomings.

Who knows, though? Who really knows? I might be exaggerating their reactiveness, but I’d rather err on the side of caution. There’s a lot at stake, not least of which my independent agency and standing in the world. I have a reputation to uphold — not because I care about what others think of me, but because that’s keeps me employed, so I can put food on the table and keep a roof over my head. I also like to buy a new pair of shoes, when my old ones wear out, every 5 years or so.

In the end, I think that our understanding and acceptance and relationship towards our autistic identities is also very spectrum-y. We go through cycles. We change our minds. Sometimes we suspect we’re not even on the spectrum, then something happens and we think, “Silly me! How could I have ever doubted it?!” And I think we should be given that freedom to question, to explore, to doubt, to reconfirm — both within ourselves and in the larger autism community.

Whether we’ll ever get that same latitude in the neurotypical world, is anybody’s guess. But we can at least start within. We can at least be our own best friends and provide the freedom we know we need — in exactly the ways we need it.


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#SheCantBeAutistic – Because women are supposed to be neurotypical culture-carriers?

pictures of diverse women - fuzzy pictures
Autistic women are rarely – if ever – seen. And then we’re suspect.

Something occurred to me this morning, while I was working out. Something about women and culture and autism diagnosis. And the intense isolation / loneliness that so often accompanies autism throughout our lives.

Maybe I’ve thought of this before, and I’ve just lost sight of it. If I’ve blogged about this before, I apologize for repeating myself. Anyway, I was pondering why there seems to be so much resistance to women being diagnosed as autistic — both in the healthcare community industry, as well as in our social milieu. The standard tests don’t include us. Doctors and therapists have a thousand reasons to tell us we’re not autistic. And even if we do get an official diagnosis, it can be pretty dicey with our friends and family and everyone else either telling “You’re not autistic!” or just plain ignoring us whenever we try to discuss it.

It’s just a little infuriating. Off-putting. Dismissive. And also detrimental to our health.

So, why? Why is it like this? I need to understand for myself, and maybe it can help someone else, too. Dunno.

I’m traveling down to see my family tomorrow. My Aunt MG’s funeral is Tuesday, and I’ll be traveling deep into proto-Aspie territory there. It’s a tough environment, to be honest, because it’s very rigid, very black-and-white-thinking, very challenging in every sensory way. The hyposensitive autistic folks tend to dominate every aspect of life – and you know how persistent we can get, when we need something like our lives depend on it. That part of the world is very proscribed and circumscribed by a dizzying array of rules and unspoken expectations. For those who think “Planet Autistica” would be a wonderful place to be, lemme tell ya — it’s not. I grew up there, and it was tough. Very, very tough.

When I was a kid, my grandfather came to Sunday dinner. This was while he was still windowed, before he married his last wife (he outlived two wives before he married a woman much younger than himself — which, since he was such an Aspie, really worked for him). He was holding forth with one of his uber-autistic monologues about how women are different from men. “Women have to be better,” he said. “Because they carry the culture from one generation to the next. They have to make sure we stay civilized, and hold the men to higher standards. Men — ” he shook his head regretfully, “are not as good as women.”

I didn’t quite know what to make of that, quite frankly. I mean, there he sat, announcing that he and all his gender were basically exempt from holding themselves to higher standards. And women were supposed to step up and keep them in line. Like we had nothing better to do with ourselves. I believe I was 15 or 16 at the time, and although I was inclined to respect his opinion, it still didn’t seem fair. Or honest. But that was his belief, and out of respect I said nothing.

A good 35 years later, I still think back on that conversation. And I wonder if maybe that underlying bias isn’t one of the culprits behind women not being diagnosed — that there’s this expectation that we’re going to somehow turn out “better” than men/boys, that we’re going to be tasked with perpetuating the culture we live in (neurotypical culture, that is). And so it’s incumbent that we be normalized as much as possible in the course of our childhood, youth, and adulthood.

I know, for me, the pressure to conform has always been intense. And it’s always come from other girls, other women around me, who have always seemed to take it upon themselves to “police” me. My tone, my behavior, my clothing, interests, my… everything. I would imagine the same holds true of boys, to some extent. But growing up around girls, under that constant pressure… it shapes you in specific ways, which you never quite escape. It’s burned into your experience, embedded in your mind.

And if you’re not “normal”, it’s a problem. If you’re not neurotypical, people freak out — I should know, they did it a lot with me. If you don’t fit in, you’re a liability, and you’re made to feel that way. As a girl, I made peace with that, because frankly it was way too much work to try to fit in, and every time I tried, I … failed.

So, I went for the “quirky” effect and I carved out my own niche being myself… and making room for everyone else who wanted to just be themself around me. It really did wonders for my ability to peacefully co-exist around others, because all the other girls (and boys) and – later – women and men who were overtaxed and exhausted from trying to keep up with everyone else… well, they always had a place with me, where they could just be themselves. And it was magical for them, as well as me.

In adulthood, things have actually been more challenging — especially now that I’m active in mainstream life, with a “career path” (LOL), a mortgage, an SUV and a minivan in the garage, a long-term marriage, local government responsibilities, and so forth. I blend much better now, in part because I don’t really try, in part because people just assume that I’m just like they are.

Just like they are… that’s a good thing to them, because it means that I’m adhering to their values, I’m supporting their choices, I’m continuing their culture. I’m a woman, and I’m playing along… As far as they can tell, anyway. I can hold a conversation (though it’s hit-or-miss, in terms of whether I know what it’s about or remember what we discussed, just a few minutes after). I can hold down a job (though my weekends are spent in major Recovery Mode, which leaves almost no time for anything else). I integrate really well with my surroundings, and I don’t stand out as a “weirdo” (thanks to, oh, 45+ years of practice — yeah, you learn a thing or two, over that amount of time). I’m a fine example for young(er) women around me, to show them what’s possible in life. I’m a walking, talking exemplar of “normalcy”, as far as anyone who’s not autistic can tell.

Those are the facts.

But the truth is something very, very different. I go along with everything, because I don’t feel like dealing with the fallout. I’m not sure I’d last, if I didn’t have these bogus structures in place. There are countless benefits to “passing”, and I’m frankly not self-sufficient enough to make a go of it without those benefits. Call me a coward. Call me a fake. In fact, I’m actually quite impaired, outside the “institution” of my artificially constructed everyday life. I have no confidence that I can put food on the table and keep a roof over my head, and once a year spend a few days by the ocean, without my voluntary institutionalization. And anybody who begrudges me my “passing” has no idea how hard it is for me to function just on my own, outside those parameters.

As long as I’m toeing the proverbial line of social acceptability, upholding the values of the dominant culture around me — woo hoo! I’m set. But the minute I start pushing the limits and stepping outside the bounds that are set for me — as a woman, as a culture-bearer — I find out about it. Those awkward silences. Those criticisms. Those comments. Those sidelong looks. Autistic people can in fact be excruciatingly sensitive to our environments, and I get a full “dose” of corrective reactions from other women, when I stray outside the bounds of their expectations.

We have a job to do — and that’s to continue the culture we live in. Women bear the children. Women do the majority of child-rearing and caretaking in the world. The world sorta kinda hinges on our willingness to play along, in order to perpetuate the culture — whatever culture we’re in.

So, if you turn up autistic, which in itself is poorly understood by … pretty much everybody who hasn’t made a concerted effort to study and understand it … that’s a violation of your contract as a woman in the world. Turning up at the doctor’s (or therapist’s) office, announcing you think you may be autistic is a violation of social / cultural trust. Because:

A) You’re in touch with your own individual experience enough to know there’s something different about you (which should have been trained out of you, years ago),

B) You’ve spoken up to call attention to the fact (which everyone knows is a no-no for women, who are expected to sit quietly while other people – men – make all the noise and draw attention to themselves),

C) You’re saying you know as much as — if not more than — the healthcare provider sitting across from you (which is the ultimate affront to socially/culturally approved authority structures) , and

D) You’re expressly saying that your own interests are every bit as significant (even moreso) as the dominant culture’s (which flies in the face of everything you’ve been taught as a self-effacing woman).

When you show up as a woman, saying “I’m autistic”, you’re stepping out of the role you’ve been trained for — a role which the world depends on you to uphold. You’re saying out loud that you’re not … adhering… and that people need to make some adjustments to make room for you in their lives. A lot of people can’t. A lot of people won’t. On a deep (and usually well-hidden) level, it strikes at the very heart of what they believe a woman should be / do, and how they should relate to you.

So, yeah – color me radical. Autistic women pose a significant “threat” to the status quo on so many levels, not least of which because we’re the ones who are expected to carry on the norms of our host society.

Some of us can’t. Some of us have no interest in doing so. And some of us may seem to on the surface, whilst behind the scenes — and beneath the surface, where no one ever bothers to look — it ain’t necessarily so.

On that note, I leave you to go off to my non-compliant, self-serving day, where I can remember — once again — who I truly am… versus what the rest of the world thinks I should be.

How I get #autistic accommodations (in White America)

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Updateautistsix just raised an excellent point that this situation could be cultural. And I agree. It is cultural. It’s White All-American, not All-American in general. Let me fix that in the text below.

Woo hoo! I just checked my Social Security statement, and it looks like I won’t necessarily be destitute when I get to my 70s. Now, this is assuming there actually IS a U.S. Social Security Administration and money – which is not a safe assumption, these days.

But I’m pretending that all the money they’ve removed from me over the years is going to be there when I need it. Let’s just pretend. For the sake of taking the pressure off.

But enough about that. I want to share a little thing I learned about how to get accommodations for autistic myself, when things are rough with me.

I can get pretty marginal at times — intense pain, off-balance, terrible sense of where I am in space, slow processing and reaction, a sharp temper that explodes out of nowhere, highly sensitive to light and sound and touch.

Times like those, I need to get accommodations and relieve some of the environmental pressures that are making everything worse.

The problem is, I can’t actually ask for them.

When I tell White All-American people I’m having trouble — even with my spouse — they get defensive and frightened. Something about my vulnerability triggers them big-time, and they not only start getting antsy, but they treat me like I’m less intelligent, less with-it, less capable, overall. As though an upward spike in my needs turns their world upside-down.

I’ll spare you my rant about how immature and “snowflake-y” that reaction is. That’s just how things turn out, at times. Especially with White Americans, who seem to have this zealous, almost religious devotion to the myth of self-sufficiency and fierce independence. Don’t get me wrong, I’m White, too, and I am fiercely independent. I’m most comfortable being self-sufficient. But everybody needs a little help, every now and then. And that includes me.

What to do?

Well, I just turn the tables, and rather than being a victim in need of assistance, I position myself as the master of my own situation, who’s managing my life pro-actively and being positive and masterful and ever-so-in-control, so I can “knock it out of the park”. As much as I hate sports analogies when it comes to living my life, and I detest using action verbs to describe a relatively blah, ordinary activity (like saying “jump on a call” for making a phone call)… well, that’s the vernacular of my environment, so I guess I’ll defer to the conventions.

White Americans seem to respond best to pro-active and positive spins on things that make me look like I’m “on top of things”. (I hate that expression, too, by the way — it messes with my literal mind — but I’ll use it nonetheless… vernacular and all.)

Here are some examples that work really well for me:

  • Rather than saying, “Oh, ouch! That sun is so bright and hurts my eyes!”, I put on my sunglasses and strike a pose with my back to the sun.
  • Rather than shrinking away from others when they reach out to touch me, I take the initiative and make contact with them first, before they can get to me.
  • Rather than asking for shorter working hours at the office, I schedule calls first thing in the morning, so I have to take them at home — or I block off time at home to work on things that don’t require me to be in the office — and I organize my daily schedule around my own needs.
  • Rather than dreading being interrupted and startled by someone talking to me when I’m not ready, I get pro-active and address others before they talk to me. If I get ahead of it, I set the stage for the interaction, for the exchange. And I get to set the tone of the conversation, which All-American neurotypicals just love. They love to have something to react to, so I give them that. I “run” the conversation, so they get to be part of a social interaction — and I do it in a way that lets them be successful. Oh, how they love following a leader — so I play that role, and they really respond well. I don’t always get what they’re saying in response to what I say, and our exchanges don’t always make any sense to me at all(!), but at least I can complete the interaction successfully.
  • Rather than telling people about how exhausted I am, how I can’t think straight, and I’m in intense pain, and I just need to collapse in bed in a completely dark window, I tell them I’m prepping for a big day tomorrow, and I’m going to get some extra sleep so I’m at my absolute best. Nobody needs to know how vulnerable and absolutely beset I am by everything. If they do find out, they get way too nervous for my comfort. They don’t know what to do. Ahem… Uh… Ahh… Er… So, I spare us both the awkward situation and spin it in a different direction that makes me look good.

When I actively reframe my vulnerabilities as points to pro-actively manage (with the illusion of CONTROL), and I assertively do just that — manage them — it puts me in a positive light and it also sets me up as the kind of person that others can depend on. I set the tone of the situation, which White All-American neurotypicals respect. And I get to dictate the terms of my demands.

Don’t get me wrong – I have no problem with my vulnerabilities. They don’t embarrass me. They don’t horrify me. They are what they are — weaknesses, deficits, vulnerabilities. But I’ve learned from a lifetime of hassling with clueless people who spook easily, that I can get accommodations much more easily and more effectively, if I frame them as demands I’m making in order to operate at peak level, rather than just making do to barely get by.

And there we have it.