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.

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Let’s see what I care about today…

three abstract people figures talking to each other
I have the day off today.

It’s pretty amazing, actually. I generally work 7 days a week at things other people need me to do. I don’t usually mind it, but it’s a glorious luxury to be able to take some time to listen to music, read, research, and discover new writers I never knew about before.

My latest discovery is Randolph Bourne, a radical thinker of the early 1900s (he died at the age of 32), who had a fair amount to say about war, society, and so forth. I don’t know enough about him, just yet, to really say much… other than he’s my latest discovery. And since he came from a town in New Jersey I used to live near, there’s a little bit of a connection I feel — if it’s possible to connect with a complete stranger who’s long dead, who hailed from a part of the world I tend to associate with some very challenging times.

I’m trying to not drink any more coffee. As much as I’d love to, it gives me a headache if I drink too much…. Water, though! I’ll drink water. That’ll be good.

I really do enjoy lazy Saturdays like today. It gives me time to unwind and just think. My day-job is way too frenetic, with far too much activity and – God help me – so much at stake!!! – it does get tiresome, I have to say. All that excitement… And for good reason. I do work in a situation that calls for plenty of vigilance and hyper-diligence. It’s just part of it.

Still and all, I do relish the times when I’m not in the thick of that.

Reading and exploring… following links at websites that uncover whole essays preserved for the duration of the website’s life… reading the words of someone I actually agree with… taking a break from the churn-and-burn atmosphere of the still relatively freshly minted 21st Century… reading the words of someone who knew how to spell, how to punctuate, how to put words together without autosuggest or autocorrect or auto-punctuate. What a pleasure. And most of all, to read the words of someone not propelled ceaselessly forward by the relentless fight-flight frenzy of the digitally driven world.

As time goes by, as I realize more and more just how much the digital world (and electronically delivered media in general) have fried my autonomic nervous system, and the ANSes of countless other people around me… as I witness increasingly with each passing day, what harm that does to the very existence of complex, higher reasoning… as I find myself unable to either listen or respond to the hue and cry of the wrong-doers and the wronged, as each side is so profoundly limited by the rightness — the righteousness — of their respective positions, which refuses to budge an inch, a centimeter, a millimeter, in response to perceived “challenges”…

Sigh.

The whole thing just makes me tired. It has the same effect on me as a gall bladder attack — it’s exhausting in ways that are hidden but very present, which come upon me suddenly in a rush of illness that tells me in general that I’ve not taken good enough care of myself, but offers no immediate relief, only the gradual, eventual re-gaining of healthy ground, so I can just go about my regular business without the constant nag of pain and self-imposed suffering.

I do it to myself with my media exposure, as well as my lapses in diet… I do it to myself by getting sucked into outrage and disgust and frustration, like so much greasy food on a slipper plate. I invite this pain and suffering on myself. In the steady progression of my ill-considered, ill-managed choices, do it to myself.

So, today I’m undoing it.

Yeah, I’ve spent a bit of time on Twitter, poking around, here and there.

And while I got more than my daily dose of human folly, I also found a reference to Randolph Bourne, which has brought me plenty of joy, just in the last few hours. I’m going to marinate in that some more. Print out some pieces. And read the words of other writers who worked prior to our digital age. Simone Weil. The Stoics. Folks who actually put some extended thought into their work and based their words on consideration, rather than knee-jerk reaction.

Folks who invite me to do the same.

What do I care about today? Peace. Of mind. Of body. Of life. Just some peace. And the cultivation of conditions that foster it.

I may go out for a walk in a bit. Or I may work on my book. That remains to be seen. I need to do some work in my front yard… but it may rain, so maybe not.

Dunno. I’ll figure it out.

But whatever I do, I need to care about it.

Or I’m not going to bother.

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.

Sharing : Rethinking Autism: From Social Awkwardness to Social Creativity

Instead of viewing people with ASD as “socially awkward” individuals who need to be “fixed,” we should instead conceptualize them as socially creative. They may not do things the “right” way, but they do them their way.

Read the rest of this great article here

Done with that autism spectrum “disorder” business

outlines of people in different colors

I woke up a bit irritated, today. I’m happy for the weekend, but the weather is dreary, and my shoulder hurts. There’s a whole lot of stuff I want to do, while I have the free time. But I didn’t sleep quite as much as I’d wanted to, which is problematic. Oh, well — I’ll get a nap later. It’ll cut into my plans, but so it goes.

I was also irritated about the whole designation of “disorder” that goes with autism. I got my proverbial mental wheels spinning last night, thinking about Roy Grinker’s assertion that autism is a social construct. Gah! When I think about it, it just seems like yet another straight, white, neurotypical man getting pissy about being left out, and wanting to say that a group he can’t belong to doesn’t exist, rather than accepting that he’s not part of it, and will never be, so he can’t have access to all the energy and attention he’s come to expect from the world. I hate feeling uncharitable, but honestly, the whole idea that academia can “invent” something as fundamental as the autistic neurotype… it’s both laughable and supremely irritating in ways I can only articulate in writing.

And about this whole “disorder” business… Actually, I do agree with Dr. Grinker in the sense that neurotypical society has concocted a disordered perception of autism. I believe it has more to do with society’s narrowing range of choices in terms of work, activities, etc., effectively stigmatizing, penalizing, or getting rid of the things that used to really help us live our lives as productive members of society.

Once upon a time, you could do hard physical labor all day and be a respected member of society. Farming, factory work, and other manual labor activities which help us manage our sensory issues and channel our prodigious energy, were all respected — and compensated. Now, you’re lucky if you can break even, doing many of those kinds of work. Once upon a time, you had to get up and walk… you didn’t just get in a car and drive somewhere. Once upon a time, kids played independently outside, ranging far and wide… now they sit in front of video game consoles and screens, or they’re herded into organized sports (which all seem like farm teams for pro teams, if you ask me). Once upon a time, everybody was on a schedule, and you could reliably count on things happening at pre-appointed times. Stores and other businesses were open at certain hours. Whether you were in the country or the city, you got up along with everyone else and went about your business in a predictable manner. You worked for the same company your entire life. There were structures and standards everyone lived by, and that was that. It wasn’t perfect (in fact, it caused massive amounts of suffering — and death — for people who didn’t fit the mold), but it was pretty predictable.

Now, things are different. And lo and behold, autism is popping up everywhere. Surprise, surprise. Autism and more… Disorders to the left of me, disorders to the right, thanks to the DSM. And to make matters worse, the world around us is truly, literally disordered — lack of predictable patterns, lack of standard structures. But is the problem with society and the way things are set up? Oh no! It’s autistic people! It’s mentally ill people! It’s diagnosed people! We’re to blame for making things so… uncomfortable for the “normals” in the room.

Yeah, I’m in a mood. Why not? It’s a crappy, rainy day (I know, I know, we need the rain), so why not match the weather with my frame of mind? I’ll get over it, eventually, just as the rain will pass.

Okay, back to it. Disorder. Dread Dis-Order.

Yes, I understand that autistic folks can have a whole lot of challenges (I definitely do). It can be really debilitating. And it is for me, at times as well. Yes, I get it that there’s a whole lot of suffering that happens with autists and Aspies. I get it that society has a long way to go before it’s fully inclusive (or even has a clue about us).

Nobody likes to be in constant pain from bright lights and loud noises and constant physical contact from a world that can’t seem to function without those features. Nobody likes feeling out of synch with, well, everything, and ending up each day in a depleted state. Nobody likes to walk on eggshells and constantly play catch-up.

Here’s the thing, though…

Disorder is so often in the eye of the beholder. And a lot of times, the root of problems isn’t about how you are, but rather how people perceive you… Whether or not they accept you… How they cope with your anomalous behavior / traits.

What makes it most awful for me is not so much the pain and discomfort of the condition. Hell, life is painful and uncomfortable for me, Autism or no. But the sheer volume of judgment around it adds insult to injury, and the psychic toll is far greater than any physical difficulties I experience. Yep, it’s no picnic to be in constant pain. It’s no fun to have to constantly re-jigger my plans and not be able to plan for anything, because I may have nothing left over for “extra-curricular” activities beyond my day-to-day responsibilities. It’s not much fun to have no energy left for those rare social occasions when I actually want to do something, but can’t, ’cause… well, I can’t. And living in a state of arrested development, because I haven’t had the same levels of access to information and interaction that just come naturally to the neurotypical majority, isn’t my favorite thing.

But I can deal with all that. I can manage my pain. I can manage my symptoms. I can wade through the confusion, the frustrations, the anomalies. It’s just when people around me start behaving badly, that things work my last nerve.

The narrow-minded lack of respect.

The ridicule — particularly the kind of light-hearted (but incessant, relentless) criticism of autistic / Aspergers traits that borders on really bad taste, even outright persecution of Big Bang Theory.

The lack of imagination — good gawd! the sheer lack of imagination and inability to accommodate any differences at all!

The lack of freedom, the constraints and requirements… the looks you get from people. Sheesh.

The most draining thing of all for me is just the sheer volume of social static I get from people over things as fundamental and uncontrollable to me as my sensory issues, chronic pain, and the overload I have to navigate every livelong day.

So, all that being said, here’s my basic attitude, which has been in effect for years and years, and will continue to — even moreso, now that I’ve got my autism diagnosis all sorted, April is over, and the year is ramping up:

I just don’t care what others think about me. I don’t have the time, can’t spare the energy, can’t be bothered with their static.

I’m not going to wait for them to realize I need to be accommodated. I’m telling them what I need, and I’m going to either get it, or ditch them.

I’m not going to dignify their ignorance and stupidity with any attention. If people are with me, they’re with me. That’s great. Or maybe it’s not so great. If they’re not with me, I’m not wasting my time on accommodating them. I have no time left for assholes.

Now, sure, you can think, “Well, that’s fine for her, but I’m in a different situation. I’m more dependent than she. I’m less able / connected than she. I can’t just turn my back on the world and expect to survive. She lives in America. I live in ____. That means the rules are different for me.”

And you can think anything you like. That’s your prerogative. As for myself, this all comes from a combination of things I’ve done over the 50+ years I’ve been around, carrying on in my own unique way, regardless of what others thought of me. It also comes from the wonders of menopause, which has drained the estrogen and progesterone from my body and has effectively rendered me hormonally independent.

Estrogen and progesterone are notorious “tend and befriend” seekers, and they complicated my life tremendously, biologically compelling me to seek out the company of people who really couldn’t deal with me very well. I think the same may be true of many other autistic folks (especially women) who are biochemically inclined to be more socially connected. In fact, if you want to truly and honestly examine the differences between the male and female autistic phenotypes, look at the biochemistry — and that goes for all the non-binary / trans folks, as well. Just ’cause you come into the world with a certain body that’s recognized as “male” or “female” by society at large, doesn’t mean your chemistry is going to mirror that.

I’m over-simplifying to some extent, of course. How we’re wired, and the biochemistry we “marinate” in, each moment of our lives, is far more complex than that. But it’s worth considering, even cursorily.

So, where was I? Oh, yes — I’m pretty much over the whole accommodations thing. I’m done waiting for others to figure out how to help me. And I’m done asking for their consideration. I’ve got to take responsibility for my own well-being and my own needs, and if that means I: A) engage less, or B) engage more in some unforeseen ways, then so be it.

What other people think of me is none of my business. So, I just have to go through life as I see fit. If others don’t understand or don’t appreciate my point of view, fine. Why should that affect me? What do I care, what other people think, anyway? If they’re right and/or they agree with me, that’s fine. If they’re sympathetic to me, wonderful. Then again, it might not be so wonderful, because people who think they’re sympathetic or (heaven help us, “empathic”), or who go out of their way to be that way, can get it all wrong and have no clue just how terribly wrong they are.

What is my business, is how I react to them. If someone is not intending to be an asshole (and they are trying to be just the opposite), but is coming across that way to me, I need to check myself and not meet their supposed assholery with my own deliberate assholery. People are clueless, when it comes to things outside their personal experience. So how am I supposed to expect someone who’s not autistic, not queer, not a woman, and not privy to my own highly unique range of experiences, to have a fucking clue how to deal with me?

They can’t. They can’t, and they won’t. But that doesn’t mean I need to be mean-spirited to them — even if it feels like I’m defending myself and my honor. If someone doesn’t mean to be a jerk to me, but their “sin” is one of omission and/or ignorance, I can’t get all up in arms about what a terrible person they are. Because they’re NOT a terrible person. They’re an ignorant/uninformed/clumsy person trying to do the right thing. Even if their choice of words is awful. Even if their choice of imagery is wretched. They’re still often trying to do the right thing.

Lots and lots of people (neurotypical or otherwise) tend to lack skill in many areas where I have expertise. I’m special that way 😉 and I need to get a grip and not get my hopes up about how well they’ll perform around me. Chances are, they’re going to be really clumsy — just like I get clumsy when I haven’t slept, I’m distracted, and my sensory issues are pinging off the register. But I need to exercise some generosity of effing spirit and give them the chance to be the best person they can be at that instance.

I firmly believe that people genuinely seek to be successful — especially socially — and when they screw up with me, it’s often because they’re out of their depth. They’re trying to move up to a new level, and their initial attempts are blundering at best. Yes, sometimes they can be mean-spirited assholes. But what does that have to do with me? Nothing. I just don’t have to meet them halfway — or meet them anywhere.

Regardless of what folks are doing outside of myself, I have to tend to what my interior experience is like. I’m responsible for my own interpretations of things. And I’m responsible for coming up with my own solutions. Ironically, I learned the most about how to advocate for myself from my late mother-in-law, who was very ill from a very young age. She knew how to make sure she got what she wanted and needed, and I learned all about how to interact with able-bodied people as a disabled person, from watching her tear through life like hell on wheels. She didn’t settle for being treated as “less than” by anyone — man, woman, or child. She stood up for herself. She was fierce. And she was severely limited, physically. She was an invalid. But you know what? She Tore . It . Up. She never settled for less. If anything, she pushed everyone around her to do better, be better, and also make sure she got what she needed.

I swear to god, I need to write about her, sometime. She blew away all the presuppositions about what it means to live disabled in the world.  She was disabled, but she was more able than a lot of non-disabled folks. She moved the world from her place in it — like FDR in his wheelchair. She didn’t wait for anyone to offer things to her. She decided what she wanted, and she got it. Heaven help you if you stood in her way.

So, I’m done with internalizing the messages about “disorder”. I’m done with even worrying about my “disordered” state. Please. Don’t even start with me. Look around — who’s disordered here, exactly? Nobody like me would ever have created the circumstances around us, and autism-and-all, chronic-pain-and-all, underemployment-and-all, near-bankruptcy-and-all, I’ve been putting my proverbial shoulder against the wheel of social change and justice pretty much my entire life.

A lot of shit that tweaked me, months ago, I realize was not worth the investment of energy. Getting tweaked about others’ dramas is not worth the soul-sink. I’ve put filters up on Twitter to block out obnoxious wailing and gnashing of teeth about THE END OF THE WORLD AS WE KNOW IT, as well as the dire predictions of ALL THE PEOPLE WHO WILL DIE. Sheesh. First of all… No, never mind. I’m not going there.

There are so many other places to “go”, and I need to take leave of the old, worn-out thinking that by increasing my own suffering, I’ll somehow reduce someone else’s. You can think that if you like, but I differ.

If you agree with me, then great. Or not. Doesn’t matter.

At the end of it all, what matters most is that my life is my own, I’m responsible for my own thoughts and experience and expression. The rest of it… it’s being taken care of by others who own their piece of it. If they don’t do right by their part, that’s too bad. But it has nothing to do with me — not their conceptions of disorder, their ideas of what’s right and what’s wrong, their devotion to a constellation of meanings that’s literally in a different universe than my own.

So it goes. The weekend is here. It’s time for my Saturday morning walk.

Philosophical Reboot – Getting back to my #autistic #stoic life

two stacks of rocks beside a rushing stream
This would be the ideal – to keep steady in the midst of the rushing streams of life

So, this is interesting. I’ve been an on-again / off-again stoic, since I was a little kid, trying to find ways to manage my sensory / anxiety / info overwhelm issues and still stay functional in the world. I was raised in a very religious (and Aspie-fied) household, and self-control always figured prominently in our family ethos.

Hold your sh*t. Keep it together. Self-possession and grace under pressure were held in the highest esteem. And of course, since I wanted to be held in high esteem, I did my best to keep it together.

I learned, early on, to not be too demonstrative about my emotional upheavals. Nobody wanted to hear about them, anyway, so what was the point of expressing them? Plus, if I “got out of hand”, I was literally pulled back into line, and the touch on my arms, hands, back, shoulders… it was excruciating. So, I learned pretty early on to not let my inner drama “soak through” to my external expression.

All this sound violent and coercive to me now, and I suppose it was, to some extent. It was no different than how my own parents were raised, though. It was “how things were done”, and when you disregard the discomfort and anguish, I suppose it actually helped me in significant ways.

I know it’s common to find fault with tough circumstances while growing up as a sign of abuse that should be eradicated, but whether my parents were managing me, or the neurotypical world was imposing on me, it was still formative in ways that have stood me in good stead as an adult. I learned from a young age, how to mask. I learned how to blend and camouflage my issues. And while that’s been a source of some pretty intense suffering, it’s nevertheless enabled me to develop a pretty impressive stoic ability to carry on, despite all the worst external conditions.

Stoicism suits me. It truly does. It’s not a practice of cramming down all your emotions, shoving them out of sight and never dealing with any of them. Au contraire. It’s the practice of living your life regardless of what happens to you. It’s a philosophy of personal autonomy in the face of uncontrollable adversity and conditions you’d never willingly choose for yourself. Rather than disconnecting you from your feelings, it connects you with them on a deep, autonomous level, where you choose what you will feel, and how you will experience your life, rather than having it dictated to you by outside conditions.

I know crappy stuff is going to happen to me. It always does. Life itself can be a losing proposition with me. Everyday I get up, I have no idea — and I mean no idea — how I’m going to do that day. I have no idea how much pain I’ll have, I have no idea how much adversity I’ll encounter. I have no control over others’ behaviors. I have no idea if my partner is going to be in a sweet mood, or foul — and likewise, all the people I work with. I don’t even know, from one day to the next, if I’ll have a job. Or if something awful will happen that takes me totally by surprise.

I can’t let that stop me from living my life. I also can’t let it stop me from being happy. I have so much I want to do with my life, so many goals and hopes and intentions — not so much for myself, rather making good use of the skills and abilities I’ve been given and developed. I’ve got a lot to do. I’m on a mission. And I can’t allow the shenanigans of the world to distract me from my purpose and detract from my quality of life.

I say that now, of course. A week ago, I was in a very different place. I’d gotten sidetracked, overwhelmed, fried by external circumstances… caught up in a perpetual, ever loudening (is that word?) feedback loop of stressors and stress. I was making myself sick — literally. And as far as I was concerned, it was everybody else’s fault.

Poor me.

Oh, poor me.

For some reason — divine providence? — I got distracted back into stoicism. I have no idea what I was googling or surfing in search of, but I happened upon some stoicism-related material… read it… read some more… thought about it… realized, Hey, this is what I myself think and believe, and actually, it’s much truer to my own guiding philosophy than all this stinkin’ thinkin’ that’s dragging me down.

So, it’s time for a stoic “reboot”.

I’ve been scouting around online, and fortunately the stoics are both classic and haven’t been hugely popular (read, economically viable for the publishing industry), so there’s a ton of material online I can download for free. Lately, stoicism has enjoyed a resurgence, and more people are writing and talking about it, but I prefer to read the original texts (translated into English, of course, though I think German translations could shed additional light), and give it all thought, myself. I find a lot of interpreters of original texts have their own perspectives (even agendas) which cloud the meaning for me. Plus, I find them less rigorous than is comfortable for me.

So, I’ve downloaded some texts by Seneca and Epicetus. I may dip into others, while I’m at it, but these are the two I’m focusing on, right now. And I’m spending time with them, reading, digesting, reading… interpreting… and doing some blogging about what I get from it, especially as it relates to how I manage my autistic issues and Aspergers life.

The blog will be an intermittent activity, since I’ve already got a lot going on. But I have a feeling it could grow into something over time. Time… that’s the first topic I wrote about. Speaking of which, it’s time to get to work. I’m at home today, since we’re having a snow storm(!) all day, and there’s not much point in braving the commute to the office.

I’d planned to go in today, thinking I’d get in a nice swim, this afternoon. But — as with so many of my other plans — it’s not going to happen.

‘Cause the rest of life happened, instead.

So it goes. Just have to make the best of it… which is a whole lot easier to do, within the comfort and quiet of my own home.

The problem of screening out autism with other conditions

dice
Maybe you win, maybe you don’t

Here’s another little tidbit that corresponds with World Autism Awareness Week. It has to do with the woefully inadequate understandings the mainstream of autism, which are both caused by and correlate with missed and denied diagnoses.

The diagnostic criteria for Autism keep changing, over time. In fact, they can vary from country to country (USA uses DSM-V, but there are a number of other tools in use). And from clinician to clinician, depending on their familiarity and how current they are on the research, the likelihood / possibility of being diagnosed can vary in the extreme. You just never know, really, especially in the US, whether you’re going to be really seen and understood for the autistic person you are.

It can be a veritable crap-shoot, and if you end up talking with a clinician who’s more practiced in other areas (as I have been, a number of times), you can end up having your autistic issues conflated with other mental health issues. Borderline personality disorder. Bipolar. Depression. Panic-anxiety. PTSD. ADHD. Trauma residue. Oppositional defiance. You name it, it’s probably been diagnosed (and treated) before autism, any number of times.

Now, this is not to say that none of these ever occur with autism, or that they aren’t actually accurate diagnoses. Perhaps they are. But too often they can be used to screen out autism and discredit the patient / client’s point of view.

One of the elements of the DSM-V Autism diagnostic criteria is that

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

 

Although this directive is fairly constrained, still there’s the idea that “disturbances [are] better explained by [another] disability”. And the fact of the matter is, a whole lot of other conditions can — on the surface — present similar to autism… unless the clinician is very familiar with “spectrum-y” symptoms and can tease them out from the haze of conflicting messages and indicators.

Autism is easy to miss, if people don’t know what to look for. Mental health issues and organic/structural conditions such as brain injury (including concussion/ stroke/TIA) or a developmental disorder can “disqualify” someone from an autism diagnosis, offering a more obvious explanation for why someone is behaving the way they are.

Co-occurring conditions may be heightened and the symptoms made all the more intolerable, thanks to the “intense world” of autism, and unless the issues that come with our distinct autistic neurotype are recognized, understood, and addressed, our other conditions will necessarily be further complicated, made more intense, and confront clinicians with a puzzling array of symptoms that just don’t make any sense — or seem made-up (to get attention, obtain drugs, etc.)

Autism-related fatigue can exacerbate all sorts of attentional and post-concussion-related behavioral issues (a tired brain is a cranky brain), possibly resulting in increased medication to offset the symptoms, while the underlying causes continue un-addressed. Sensory issues can repeatedly traumatize a person, spiking their PTSD, and resulting in more (and more) talk therapy designed to uncover supposedly deeply buried memories or emotions that are causing the stress… which in the case of autistic folks can actually exacerbate their stress, no matter how hard they try to comply and “get it right”. On the surface, it may look pretty cut-and-dried to the clinician, but they’re missing a critical substrate that sets the stage for ongoing issues, which may appear intractable.

This can end up confounding treatment and sending an autistic person down an extended medical/clinical “boondoggle”, filled with confusion and ill-chosen pharmaceutical and psychotherapeutic tactics. Ultimately, the autistic patient can end up zombied-out by their meds, or the clinician may give up, considering them a borderline Munchausen case, just looking for attention.

Now, if we consider that autism is a distinct neurotype, rather than a disorder, we can literally get the best of both worlds (so to speak). By understanding the context of autism, the experiential / physiological substrate of our overall condition, we can all factor in co-occurring conditions and gain a deeper understanding of not only how autism affects us, but the other condition(s) we’re dealing with.

Take my migraines, for example. I had daily sickening headaches, some of which had me doubled over in pain, for years and years. And yet, I didn’t fully realize how much they were affecting me until a few years ago. My PCP/GP and other healthcare providers thought it very strange that I would go for years saying, “I never get headaches,” and then suddenly announce that I always had a headache, and I had for years. It was literally not the sort of thing I wanted to think about, so I didn’t. I figured it was just how I was, just how my life was supposed to be. Not until I started talking to other people about it, did I realize that other people didn’t actually have headaches that intense on a daily, moment-by-moment basis.

Now, if you know a thing or two about pain perception and how variable it can be with autism, that may not seem so strange to you. And if you’re familiar with how we can block everything out of our attention when we’re locked onto an attentional target, it makes a lot more sense that I’d be in that situation. Additionally, knowing how … haywire … our sensory detection systems can be, as well as how overwhelming and wide-ranging our sensations can be, it would make sense that the sickening pain of a constant migraine would just blend in with the never-ending stream of unpleasant experiences that make up the background noise of my life.

But if you don’t know about wonky pain-perception, the autistic ability to block out unwanted stimuli, and the cacophony of sensory input a lot of us live with, I’d probably look like an attention-seeking exaggerator who’s just shown up for the drugs.

Of course, when I documented my headaches and presented my providers with the evidence of day after day of ever-present, continually morphing pain, there wasn’t much they could argue with. They could, however, give me strange looks and jump to the conclusion that there was something seriously wrong with me, if I went for years with this level of pain without telling anyone about it. Maybe some long-buried trauma from a horrific childhood… maybe a form of multiple-personality disorder… a recurring dissociative fugue state… better addressed through counseling than medical treatment.

Ultimately, I did get help for my headaches, and it’s been about a year since I last had a constant migraine. Last weekend, I had one for a few days, but it went away, as they now tend to do. But I can’t help but wonder — if my doctors had realized I was autistic and my spectrum-y issues blocked my ability to detect and interpret pain, would they possibly have asked me different questions, and might they possibly have taken a more pro-active approach in helping me identify and treat the conditions that were making my life a lot more complicated than it needed to be?

Personally, I think a working knowledge of autism and its “confounding” factors should be taught to clinicians, and that would clear up a ton of confusion. Also, by taking an inclusive, co-occurring approach that factors in the “substrate” of autism in the overall picture, we can truly appreciate the complexity and richness of the autism neurotype, and even gain greater insight into the intricacies of our co-occurring conditions (even the organic ones). Autism exaggerates a whole lot of sh*t, and we could learn a lot about any number of conditions if we studied the interplay of autism with co-occurring conditions.

  • Migraines
  • Depression
  • EDS
  • Stroke/concussion/other kinds of brain injury
  • PTSD
  • A wide range of mental illnesses
  • Injury recovery
  • [ Insert condition here ]

Rather than using these other conditions to deliberately rule out autism (or simply obscure it), let’s consider that autism might sometimes actually co-occur naturally and form the context for the experience. Diagnosis of autism needn’t be a damning prognosis. It can be a starting point to better understand.

But of course, first you have to be aware that it even exists, in all the forms it does.

And that’s not happening. Yet.

How I get #autistic accommodations (in White America)

Thumbs up, thumbs down

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.

Stella and the imperfect #autistic storm

person wading through keep snow on a winter hike in the alpsWe were supposed to have an awful, terrible winter storm yesterday. It was supposed to shut everything down for two days in the area where I live. Driving home from my parents’ place in Pennsylvania on Monday, we passed one sign after another on the highway warning about blizzard conditions for both Tuesday and Wednesday.

Well, it’s Wednesday, And it’s a bright sunny day, with beautiful blue sky and white puffy clouds floating around. There’s snow on the roads in places – especially on the back roads – and the sides of Main Street are piled high with plowed snow. But in terms of Snowmageddon, this was pretty much a non-starter. If anything, it was just another winter storm like many we see in New England. In fact, it was one of the less dramatic ones.

We’ve had storms in the past that dumped 27 inches on us in the space of a day. We’ve also had years where one storm after another dumped several feet of snow on us, day after day, and the snow was so high, I couldn’t see many of the big rocks in my backyard. I know we’ve had a lot of snow, when my backyard is a flat white surface. That rarely happened this year, and it certainly didn’t happen after Winter Storm Stella yesterday.

All of the drama and all of the anxiety about Stella reminds me of the drama and the crisis that often gets spun up around autism. I just spent four days with people who are very spectrum-y, and not once did I feel like there was something wrong with me when I didn’t make eye contact, or I stimmed, or I flapped my hands. This was true both inside my parents’ house and outside. My quirky nature has always been seen as just who I am in the place where I grew up. That doesn’t mean it was easy growing up there, but it does mean that all of my characteristics which the mainstream considers dysfunctional are simply considered attributes of my personality, which needed to be adjusted or mitigated or managed in some creative ways, to make it possible for me to interact effectively with my family and the larger community.

It seems to me, that the drama around autism is roughly akin to the drama the people in southern states feel when they get 6 inches of snow. All hell breaks loose, everything grinds to a stop, and the regular flow of life is completely disrupted. For those families who are not comfortable with the characteristics of autism, or who have different standards of behavior and being, I would imagine having a child who does not conform, does not comply, and seems to ostensibly have no capacity for doing so, would be roughly the equivalent of living in a tropical climate and getting 6 inches of snow in a day’s time.

For those of us who are familiar with heavy snow storms, we take a 27 inch storm in stride, and to have the equipment and the attitude and the skills to handle heavy snow falls, it’s really no big deal. Likewise, when you understand the rigors that accompany autism, and you can read the signs, you can adapt, and you adjust accordingly. It’s not at all a horrible epidemic pox that brands you and your family as rejects for all time.

That all being said, with autism awareness month is right around the corner, it seems like everyone is gearing up for yet another version of winter storm Stella. For those of us who know how to handle these things, it’s not always that big of a deal. Of course, it’s not easy, sometimes it’s damned hard, and it takes concerted work, just like clearing 1.2 metric tons of snowfall from your long driveway. But it can be handled. We can deal with this. It’s not the sort of thing that happens every single day to every single person, and we all handle ourselves with greater or less or degree is a facility, but still, it needn’t be a catastrophe, when it does show up.

As for me, today I am enjoying the snow. I am enjoying the last throes of winter. I am really enjoying the fierce cold snap, which makes my internal thermostat kick in and warm up, and I know from experience that whatever Mother Nature sends my way – whether in the form of snow or my autistic tendencies – I can deal with it. It’ll take some work, and it will take some doing, but it can be done.

And it doesn’t have to be a huge fucking deal.