Thinking about this whole “Asperger and the Nazis” thing

In case you hadn’t noticed, a paper came out recently entitled Hans Asperger, National Socialism, and “race hygiene” in Nazi-era Vienna, and it’s been stirring things up in Autistic corners of the world. Apparently, Asperger’s role and involvement with Autistic children in Nazi-era Vienna was a lot less benevolent than a lot of people have supposed.

The news isn’t good, especially for those who have seen Asperger as an under-the-radar resister to genocidal fascists, a kind of light in the general darkness, whether it was WWII or the cluelessness that’s dominated discussions about Autism, lo, these many years. His descriptions of Autistic kids have been called out as perceptive, even appreciative, and his name has been associated with Autistic folks with a certain profile of abilities and support needs. But… he was allied with the Nazis.

The paper is open access, and you can either read it online or download a PDF. I skimmed through it yesterday. The text itself is over 30 pages, and then there are 10 pages of endnotes (which is fun for some of us – you know who you are 😉  It’s no small task to wade through paragraph after paragraph of carefully woven narrative, citations, references, and so forth, which go directly against the prevailing perception of the once-favored Herr Doktor.

Asperger never joined the Nazi party, apparently. But he did plenty to appear compliant. ‘Beginning in 1938, he took to signing his diagnostic reports with “Heil
Hitler”,’ and he described some of his partly-Jewish-descended patients as “Mischlings” (“mixed Jewish blood”, which was literally damning, for those times). This is just not good:

On 27 June 1941, 2 months before her third birthday,
Asperger examined a girl at his clinic named Herta
Schreiber (Fig. 6). The youngest of nine children, Herta
showed signs of disturbed mental and physical development
ever since she had fallen ill with encephalitis a few
months before. Asperger’s diagnostic report on Herta
reads as follows:

Severe personality disorder (post-encephalitic?): most
severe motoric retardation; erethic idiocy; seizures. At
home the child must be an unbearable burden to the
mother, who has to care for five healthy children.
Permanent placement at Spiegelgrund seems
absolutely necessary.95 (Fig. 7)

Herta was admitted to Spiegelgrund on 1 July 1941. On
8 August, Jekelius reported her to the Reich Committee
for the Scientific Registration of Serious Hereditary and
Congenital Illnesses, the secret organization behind child
“euthanasia.” In the form he sent to Berlin, Jekelius
pointed out that Herta had no chance of recovery but that
her condition would not curtail her life expectancy—an
unacceptable combination…

In the end, Asperger did have blood on his hands. As did everyone who actively cooperated with Nazis at that point in history.

Now, before you start thinking I’m an apologist for this sort of thing, rest assured, I’m not. I’m seriously reconsidering referring to myself as an Aspie, or talking about Aspergers Syndrome at all. I’ve never been 100% comfortable with referring to myself as having a “syndrome”, anyway. If I have a syndrome, then the rest of humanity does, too — and they’re far worse off (not to mention more dangerous and impaired) than I am, thank you very much.

Here’s the thing, though… So much of our completely justifiable outrage doesn’t account for how things were, back then. I often wonder why — why?! — any Jewish or otherwise non-Nazi doctor or professional would have wanted to stay and work in Vienna, in those days? It was their home… okay. They were settled there and had their roots there, and nobody was going to push them out. Okay. I understand that perspective. But if things are going south… or even smelling like they’re going to… why stick around?

I say this as someone who grew up in an environment that literally wanted to destroy me. As a woman, as an intelligent person, as a non-binary queer. I’ve moved a number of times in my life, and for the past 23 years, I’ve been settled in a place where I can peacefully exist without constantly looking over my shoulder or worrying about being attacked or losing my job or being pushed aside, just because I’m different.

I also lived in southern West Germany from 1985-87, in an area that had a lot of children of hardcore Nazis. Even some surviving Nazis. Around midnight in the pubs, when the televisions signed off for the day and the national anthem played, all the old-timers who were out late drinking would be mournfully silent during the song, then their stories would turn to the “old days”, for example, when they worked in concentration camps. Hmm. Something about sitting a few tables away from someone who might have had a day job at Auschwitz … well, it makes you think.

It still makes me ill, to recollect.

And what I remember so clearly from those days in rich, well-appointed, idyllic West Germany was how hush-hush everything “unpleasant’ was, and how incredibly screwed up a lot of people were. Heavy, heavy drinking. Domestic violence. Just a ton of dysfunction simmering under the surface of what was an otherwise prosperous and well-run society — the most prosperous in Europe, at the time. It was seriously messed up. If everything was that twisted under excellent economic conditions in times of peace, I can’t even begin to imagine how screwed up it was back in Asperger’s time.

Now, I wasn’t a professional in Vienna in the 1930s, so I can’t know for sure what I personally would have done at that time, but in my own life I’ve relocated over less dangerous circumstances, and I seriously doubt I would have stuck around. Maybe it’s because of the lessons from that relatively recent history that I’m so willing to relocate — I’ve learned what happens when you “stick it out” even though things are clearly developing against you. In any case, I’m pretty sure I would have booked passage and gotten the hell out of Europe, if I’d had the chance. Hell, even if I hadn’t had a chance, I would have done my best to get out of there. Of course, that wasn’t always possible, especially if you were Jewish, but Asperger wasn’t Jewish. He probably would have had far fewer barriers to leaving. He had more of a choice than most. He chose to stay.

With this in mind, my attitude has always been that Dr. Asperger did a deal with those devils. In fact, I feel like pretty much anyone who stayed behind and continued to be installed in their position in Nazi-occupied areas, had to collaborate at least a little bit, to keep practicing their profession. Think… Vichy France. And a little bit of collaboration could morph into a lot without even realizing it. It’s not hard, under those conditions, to get swept in, even if you are trying to find a balance. The vice was so tight, the control was so pervasive, and everyone and everything was so scrutinized by the Nazis’ machine, that I firmly believe there was no way anybody could have practiced professionally — especially medicine — without furthering the Nazi agenda to some extent.

There were some Schindlers in the crowd, of course, but the vast majority were not… making increasing concessions as the years wore on, to stay in the game, till the pendulum of history swung back around and they could get back to their non-Nazi-fied lives.

Does this vindicate Asperger or any of his other contemporaries who went along (er, like thousands upon thousands upon thousands of everyday people), hoping the bad dream would finally pass? Not even close. But it does put things in perspective.

And whenever we look at history, I feel we must view it in light of how things were, back then. Not how they are (or should be) now. That’s extremely hard, these days, because the world we live in (and lots of young people have grown up in) is so very, very different from how things were in 1930s Vienna. Or the 40s. Or the 50s, for that matter. Things that used to really suck have been turned into consumer commodities, with the rough edges buffed off to make them more saleable. The 1950s have morphed into the “mid-century” with stylish furniture and television shows (e.g., Mad Men) extolling that “simpler time”. But some of us still remember just how completely screwed up that time was, with women not being allowed to have their own credit cards without their husband’s approval, and homosexuality being a jailable offense. The 1960s have been cast in a counter-culture light, but for many people they were just an extension of the oppressive 1950s, with the Vietnam  War taking place of the Korean Conflict. I know my own upbringing in the latter half of the 60s was every bit as oppressive, sexist, classist and exploitive as the 1950s were for others. We look back through the lens provided by a market economy that has everything to gain from us reveling in the good, while setting aside the bad.

The whole 20th century was a bit of a sh*tshow, as far as I’m concerned. And yet, it was an improvement on the 19th. Indoor plumbing. Electricity. Internet. Every generation has its disgraces that it can never get free of. And when we lose sight of that, we lose the ability to think critically and assimilate the lessons of the past.

So, no, Asperger has never had a “get out of jail free card” from me. I’ve always known he was culpable. Especially for the stuff that wasn’t documented.

Plus, beyond the times he lived in, he wasn’t the only medical / psychiatric professional whose practices were suspect. Let’s not forget how young the psychological field is. It’s been around for just over 100 years. Not a long time, really, and in many ways, it’s still in its infancy (despite what the Psy.D’s of the world would have us believe.) Especially with regard to Autism, pretty much most medical professionals have been barbaric / sadistic in their treatment of people like me… And many still are. It’s not so different from the treatment of queers when I was growing up was. If you were a homo, you could get shipped off to a psychiatric facility, given the early version (ugh) of shock treatment, be beaten, killed, lose your job and your home… you name it. And there was nothing you could say about it, because those were the norms of the day. If you were really that different, that’s what you could reasonably expect.

I’m not saying it was right. I’m saying that’s how it was. And it was even worse in prior decades and centuries. When we lose sight of that miserable fact, we stop being able to have a rational conversation about Asperger, Autism, difference, and human nature in general.

So, no, the whole “Asperger was a Nazi collaborator” trope hasn’t ruined my day / week / month / year / life. I’ve always figured his record was far more besmirched than anyone guessed. Just the fact that he was able to keep practicing medicine after the Anschluss, and throughout the reign of the Nazis, always seemed clear evidence that he was compliant in ways that killed off people like me. We just didn’t have documented proof, till recently.

To which I say, “Meh. So what else is new?” People have been trying to destroy me, my entire life. They haven’t succeeded. Yet. They will keep trying. I don’t take it personally. I see them for what they are, and I act accordingly. I live my life — in places where I can live safely. I avoid people who wish me harm, and I try not to give them my money. I don’t take their sh*t, but I know my life force is worth more than hassling with people like that. I have things to do. I have another world to create. Asperger being ID’ed as a Nazi accomplice doesn’t make his work any less useful — for the good it’s actually done. It just makes our understanding of him — and the human species — a little more complete.

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Oh, look – it’s Monday again…

sunrise over a mountain with a barn and field in the foregroundHa! Well, that snuck up on me. I had a pretty full weekend, reading and writing and taking care of some intermittent work that occasionally shows up. I also sorted out a bunch of stuff in my head about things that have been troubling me for some time. And I made good choices about what to do with my time.

In another 15 minutes, I need to get on a phone call with someone in Australia. He’s got a strong British accent, despite his “down under” location, and he talks quickly. Very quickly. A regular “firehose” of words and ideas.

Oh.

Fortunately, we understand each other, and he knows he has a tendency to overwhelm just about everyone he talks to. Detail. Detail. Autistic, maybe?

Could be… Wouldn’t surprise me.

Anyway, we’re in high tech, and we’ve both been in it for decades, so that’s a high likelihood. We can commiserate about how nonsensical things are, as well as place bets on how long till we get laid off. We’re both over 50 years old, so we’re prime candidate for downsizing. If I’m worried at all, it’s that I won’t get laid off with a nice severance package. I suspect that day may come in another three years, since the handful of dollars they gave me for “long-term incentive” (shares that mature over time, to entice you to hang around) are done in three years. And I’ll be 55 then, which makes me really qualified for a buyout.

Just cut me a check, and we’ll call it a day.

Oh, except… People love me. They want me around. Ha! Isn’t that hilarious? I have no idea what they’re saying to me, half the time, and sometimes I don’t even recognize their faces for a few moments when we first run into each other in the halls. I nod and smile as they go on about whatever it is they’re going on about, and in many of the meetings I attend, I’m completely lost and have to piece it all together later. I can be cranky and uncouth, difficult and abrasive. But I’m a go-team(!) team player, and people really seem to like my imitation of a neurotypical that I perform on a regular basis at work.

Oh, actually, come to think of it, I don’t do that imitation all the time. I also let my Autistic quirks shine through, on a regular basis. Quick bursts of intensely detailed information that no non-autistic person would consider. Stimming, tapping, brushing, etc. Sudden bursts of raucous laughter that make everyone around me jump. Hands over eyes, when thinking… fists clenched tight around a wad of tissue… dancing and flapping… I’m too old and too busy to manage others’ expectations and responses, quite frankly.

Take me as I am.

Because, frankly, I’m wonderful. Being an awesome team player is one of my Areas Of Autistic Specialty (AOAS), and I make an art form of it. No matter what, even if I personally hate you with a cold, burning passion, if you’re on my team, and you come to me for help, I will come to your assistance, and I will do what needs to be done to help you be successful.

That’s why they keep me around. And (ha ha), it’s probably keeping me from getting my early-retirement payout.

Maybe I need to start being mean to people more…

But that wouldn’t be me. It’s not in alignment with my values and principles, so nope. Not gonna do that. I have to live with myself, after all.

So, it’s Monday. I have to start my conference call in 6 minutes. Heaven help me! I hate conference calls, but some days, that’s all I do. It’s the job. Tough luck.

So it goes. So it goes.

To live a consistently constructive life

stairs outside buildingOh, lord… I’ve been caught up in that high-tech mythos that Everything You Do Has To Have Global Impact, or it just doesn’t matter.

Augh! Pressure!

Huh. How ’bout that. I’ve been thinking a lot about how my life has unfolded, and I’ve been feeling badly that I haven’t Made A Global Impact, the way we’re expected to do, these days.

No matter what we do, these days, we’re supposed to Go Big. Especially online.

We’re supposed to “generate content” that gets lots of views / likes / responses.

We’re supposed to “engage” on a global scale, and that’s allegedly going to change things.

We’re supposed to Go Big Or Go Home. And anyone who doesn’t aim for BIGness is a liability and a drain.

Huh. How ’bout that.

As it turns out, even after being in high tech for 25+ years, I’m deeply skeptical of the whole promise around dramatic, lasting global change. If anything, I’ve become more skeptical. Yes, it’s possible to have a global impact. And yes, it is possible to really make a huge difference in the world. But will it last? Will it have the intended results? It’s still too early to tell.

Plus, the way we measure what does and doesn’t matter seems pretty much based on numbers linked to volume (views, likes, sales, etc), and that doesn’t actually show us what kind of impact we really have in the world, qualitatively speaking.

See, the difference I want to make is about quality, not quantity. I don’t want to have to worry about volume of likes and views and shares and whatnot. I just want to do what I do, and have it make a difference. I want to do something constructive, every single day, and see the tangible results of my work.

I also need to provide for myself, pay the bills, and keep the money coming in, so I don’t end up living on the street (that happened to me years ago, and once is enough for one lifetime, thank you very much). That’s been a huge concern of mine. But I just ran the numbers for the trajectory of my financial situation, and it looks like I’m actually going to be in good shape, provided things stay relatively stable over the long-term. The big opportunity for me are the years between when my house is paid off in another 12 years, and when I am slated to retire, another 10 years after that. Once my mortgage is taken care of, I’ll be able to save most of what I earn, and I’ll be doing that pretty aggressively.

Of course, all this is assuming that I continue to be employed… that I can keep earning at an acceptable rate. But honestly, since I’m a little on the low end, earnings-wise, I’m a bargain. So, I get to keep my job. It’s easy to price yourself out of the global job market. Don’t want to do that.

But it’s not just about money. One of the key ingredients of my ongoing employment is making a substantive, positive difference in people’s lives on a daily basis. If I contribute to the well-being and success of people I work with on the job, they have incentive to keep me around, and even advocate for me. Making a constructive difference means I’m contributing. It means I’m integrated into the ecosystem I’m operating in. It means there’s a reason for people to keep me on.

And this is where being Autistic keeps things interesting. See, I didn’t even realize all this until somewhat recently. I’ve been in the everyday workforce for 30 years, and it took me this long to comprehend all this. I mean, intellectually, I understood the principle of making yourself useful and contributing. But it hadn’t really sunk in about how my day job fits that focus in my overall life. I strive to help people I meet outside of work — but helping people on the job? That was of no interest to me, quite frankly. If anything, other people were an intrusion and a drain to be avoided at all costs.

For so many years, I treated my day job as just that — a job, a way to make money to fund the things outside it — the things that really mattered. I wasn’t interested in getting invested in the relationships with people I worked with, because I just didn’t see myself as part of it all. I was too cut off, too separate, too intent on protecting myself and making sure I had what I needed, regardless of how that impacted others.

But now, I realize that what really matters to me, is living in a comprehensively connected way, finding paths to contribute and be a part of something bigger than myself. While I’ve never before considered my job worthy of full investment, now that’s totally changed. It was partly because I was so busy managing my Autistic issues without having a full understanding and appreciation of them, how they impacted me, what impacted them, and so forth. I didn’t have a whole lot of bandwidth to get personally invested in what was going on — especially because so many jobs I’ve had involved long commutes and really tough environments which were loud and open and constantly challenging.

Now, however, I have a job where I can work from home whenever I need to. That means I can often take a nap when I need one. And I get a break from the busy-ness at the office. I don’t have to drive in rush hour traffic. I don’t have to constantly make eye contact and figure out social interactions. I can relax… Even lie down, if I need to, while I read and answer emails on my mobile phone.

And that makes all the difference.

I can take care of myself. And I can take care of my work, my relationships, my future. The thing, too, is that I notice that others I work with are doing better when aren’t stuck in the office 5 days a week, as well. I find that people who work really effectively in a remote environment can be more mature, better at managing their time, more motivated, and more adept at building and sustaining relationships than people who have to be at an office to do their jobs. So, the types of people I’m working with are also more compatible with me.

It’s a win. For everyone. Especially me.

So, while I’ve been feeling a little “slacker-like” for not having turned the world upside-down with my dramatic innovations and whatnot, I’m finding that I’m much happier just tooling right along, taking care of myself, taking care of my relationships, taking the pressure off. Just living my life… Doing something meaningful each day, wherever I am, whatever I’m doing.

It all matters. It’s all connected. And after so many years of stress and strain, I’m finally really getting it on a deeply felt level.

And that’s a good thing. A very good thing, indeed.

Or, I could just do what I’ve always wanted to do

open book with fairy dust on a messy backgroundAs it turns out, it really doesn’t make sense for me to go back to school, at this point. I looked at the numbers for how much it’s going to cost me, and I checked around to see what other people’s experience has been like with the program I chose. Reports are mixed. Some people love it, some hate it. Being totally realistic, when I think about my time commitments, my money situation, and the general trajectory of my life, if this is gonna be expensive and time-consuming, going back to school is definitely not at the top of the list.

I tend to think about restructuring my life on a semi-regular basis, especially when I am tired and overworked. I end up charting a whole new big course for my life, forgetting about the things I already have happening. And I lose the plot of my life. I’ve been feeling like that’s been happening a lot, lately. Losing the plot, forgetting what my priorities really are, overlooking the things that I love and that mean so much to me, and just getting caught up in distractions.

So, while I like the idea of having a degree, finally, unless it is absolutely, positively critical for me, and it’s fast-tracked and not expensive, it doesn’t make sense for me to sink the time, energy, and money into that whole endeavor.

So, back to my original programming. Focus on my writing, focus on my day-to-day life, my responsibilities, my obligations, and do my best by them, instead of getting wrapped up in a change that I’m somehow convinced is going to dramatically alter the course of my life.

I really have to stay fluid with this. Everything feels like it’s shifting and changing around me, and I need to not lose the plot on my writing. I’ve become increasingly concerned with the end-game I’m caught up in right now. Getting a degree for the sake of professional advancement doesn’t necessarily make sense, if I’m going to age out of the 9-to-5 workforce in 10-20 years. My age is a factor where I work, and people my age are usually shown the door before too long. Early retirement… I’ll be eligible in less than 5 years, which seems just so bizarre to me. If that happens – and I sincerely hope it will – that means I’ll get severance pay, and that’ll be a bit of a buffer to float me. It probably won’t cover me for long, but it will be something. And that is what I am holding out for.

So, yeah… end-game. Not in terms of the end of my life, but in terms of the end of my standard-issue mainstreamed life. I own a house with a mortgage that will be paid off in less than 12 years. After that, my need to make boucoup bucks will decrease dramatically. I’m also setting myself up for greater self-sufficiency — getting a plot in a community garden, setting up my own home for greater energy efficiency, streamlining just about everything I can manage, buying big-ticket items now, while I can still afford them, and generally cutting down on my dependency on whatever I can — especially the expensive shit.

As for income, ideally, I’ll be self-supporting via my writing, in another 12 years. It may sound like a stretch, but I need to get my act together with this, do the work I need to do in order to write the best work I can and really contribute. For all my complaining about the need to promote myself, that’s just a part of the whole for anyone who wants to be self-sustaining. I just need to find the proper tools to get myself some exposure and connect with people who actually want to read my work.

Get my Patreon refined. Actually make that a thing.

And put my energy into that, rather than getting a degree which I may or may not need, in the grand scheme of things.

If I need it, and it’s easy and doesn’t wreck my life, I’ll go for that degree. But quite frankly, I’ve been dancing around getting my writing out there for quite some time. Fits and starts. Fits and starts. And it’s getting a little old.

So, time to turn my prodigious focus to the task of figuring out this writing business, figuring out how I can get some income coming in about it. There are a lot of micropayment options out there, and if I build up enough of a following, that could sustain me, most likely. It’s just a matter of connecting with people who can and will contribute — complete the circle of creation, to keep it going.

Well, we’ll see how it turns out. Always an adventure.

Working towards #Invisible #excellence

Picture of a large book standing open on a grassy bank, with a chair and tree between its pages and birds in the distance, sunlight streaming downThis weekend has been very much about art. And excellence. And solitude. And suiting myself. And working.

I wrote what I think is a pretty decent essay on Saturday morning. I was invited to submit an essay about the intersection of my queerness with the faith of my religious upbringing, and it was an intriguing proposition. It’s taking me places I haven’t “visited” in a long time. To be honest, I generally avoid … going there… because it can be so painful and so convoluted and so frustrating for me to think about it, let alone write about it in ways that others will understand.

I am seldom asked to contribute writing. It just doesn’t happen. I write a lot, I’ve written a bunch of books, and I blog pretty regularly, but I’m not in the publication ecosystem, if you will. When I was a kid, all I really wanted to do, was be a writer. That’s all I’ve ever wanted, and I’ve made all my job choices because of needing to protect my writing process. Shelter it from outside intrusions. Guard the time I have available to work. Center my life around it, in countless ways. That desire, that drive, has informed every single choice I’ve ever made, and one of the reasons I got involved with my partner, and stayed with her for 26+ years, is that she gets me as writer. She values that. She respects it. And she leaves me alone to pursue it.

I am such a writer. It’s not even funny. I’m rarely blocked. If anything, I have more material to write, than I have time to write. That’s been the prevailing theme of my life: So many words, so little time. And some of the words are actually pretty decent. I devote my waking hours to noticing things and thinking about them in ways that few other people do. When other people have read what I had to say, at times they’ve been amazed. If I felt more comfortable about it, I’d brag a bit on that point. But other people’s respectful notice of my ideas puts me off. I can’t help wondering, “Why is this so amazing to them? It’s just common sense?” And I can’t even begin to discuss it all, because I often come off as arrogant or stuck-up or condescending.

Sigh.

Well, I’m not sure I actually want to talk about my writing with other people, anyway. For me, writing and reading happen in a nonverbal space — where words and ideas and images all swirl together without needing to be spoken. When you add in spoken words, you overlay it with a whole other dimension of experience — adding a timbre, a frequency, if you will. A sense that was never there to begin with in the space where there is only the written / silently read word. It changes the experience of the piece. And I deeply regret listening to one of my once-favorite authors reading her work aloud. It ruined it for me. It ruined her work for me. Because for now and ever more, I’ll hear her intoning in a dramatic, almost hyperbolic manner the ideas that once struck me as solid and rooted in calm.

I hate talking about my writing with people. It’s like, if you get it, you get it. And there’s no need to talk about it. The work stands on its own as a separate entity in itself, with a sense that belongs only to the reader, just as the sense of writing it belongs only to me. Trying to embody each others’ experience… I don’t consider it a good use of time.

If you don’t get the work, there’s nothing I can tell you that’s going to make it any different. Nothing I say is going to create for you the experience I was hoping you’d have. You’ve got your own perspective, your own phenomena, your own version of the world. And that’s fine. It’s just not something I share. And in a way, I almost like it more when people really don’t get my work (and don’t pretend they do). It’s honest. It’s clean. It relieves me of the obligation to discuss it, to see what it meant to the other person, to pretend I want to connect with them over my creation… or rather, the creation that made itself available to me, that I could bring it into the world.

I know, as a writer, I’m supposed to strive to get my work the largest audience possible. Market the Muse. Get The Word out. I’m supposed to promote it. Support it. Get it in front of people. Social media! Facebook! Twitter! Pinterest! Instagram! Tumblr! And whatever else… Google+? Definitely SEO, so people can find it if they search for that sort of thing.

But that’s not writing. That’s promoting. And frankly, I’m not a fan of how the publishing industry has pushed the onus of publicity onto the shoulders of the writers. It makes no sense. We’re writers, for chrissake. If we were going to be marketers, we’d be marketers. Or am I missing something?

I dunno. I’m tired. I’ve had enough for one day.

Bottom line is (and I’ve written about this before), obscurity and I are on very good terms. And my obscurity allows me to focus on what matters most to me — the word, the sense, the feel of it all. The minute I lose that shelter, my inspiration starts to dry up.

So, I make my choices. I work in secret, in silence, in obscurity. If I handle this well, I’ll manage to create something genuinely excellent, before I reach the end of my road. Whether the rest of world knows about it… not my problem. What I know about, is.

Yes! It’s Friday

I’ve got a million reasons to be happy – I’m Free!

I’ve never been a fan of the whole TGIF thing. Seems to me, if you’re really that unhappy with your life — so unhappy, that the best day of the week is when your regular life is about to go on hold — you should really do something about your life, in general. Why stay stuck, if you can make a change? It’s not always easy, of course, but it can be done.

I still feel that way.

But today I’m really grateful it’s Friday.

‘Cause truth be told, I’m kind of stuck in the job where I am now. It has its high points and its low points, like any job, but I know it’s not where I want to be for the long term. I’m just sort of tolerating it right now.

And I’m in that state of mind that’s all about just getting through this last day and then taking a break from it all and getting back to my own sort of experiences.

Thank God It’s Friday, indeed.

Actually, I’m incredibly lucky, in some ways. I’m able to work from home when I need to. So, I’ve been working from home most of this week. I’ve only been in the office one day, that I can remember. Or maybe it was two? Can’t recall. And that’s nice. It’s when I can remember each and every moment of a week, that I know I’ve had a hard time.

But when I can’t remember… that means I’ve been in a bit of a flow state. And the sh*t that’s hit the fan hasn’t stuck to anything.

That’s a great state to be in.

And here I am.

Well, speaking of work, I should get to it. Just really glad to be here, today.

Very glad, indeed.

 

I dunno – I just don’t think there’s enough positive stuff out there about #Autism

human silhouette on beach with sunsestNot to mention success stories.

Okay, okay, I get it. We need to build support for folks who really need it. But I think at times that our Autistically rigid thinking keeps us aligned with some pretty rigid support possibilities, many of which simply aren’t available to all of us.

The needs of an Autistic kid in a city may be very different from the needs of a middle-aged Autistic woman living in the suburbs, and they may be very different from the needs of a 30-something Autistic man living in a rural area. And then we have our aging population… men and women… who have been through so much, and now face the double-whammy of becoming elderly (a challenge in society, in general) and having those sensory/social challenges which may become even more pronounced in old age.

I’m worried. Anxious. For myself and all my Autistic tribe. And I’m not alone.

The thing is, I suspect that anxiety takes the edge off my creativity. It locks me into rigid thinking. And it erodes my ability to come up with some really inventive solutions.

Personally, I think we Autistic folks are some of the most inventive people on the planet. For sure. I mean, look around — so much of what we have is the product (I believe) of an Autistic person with an intense interest in One Single Subject. That focus has produced some truly amazing things. And that same focus can help us fix our future.

So, the future… yeah. What does that hinge on?

Well, the past, for one. And also… patterns! Patterns, yes. We plot our course forward by referencing patterns — this leads to that, this causes that, if you do this, you can logically expect that. And we gain a sense of where we are in the world by watching other people and seeing how their lives have shaken out over time.

We are constantly learning from other people, “ingesting” their experiences, learning from their mistakes, and taking cues from their stories. Humans are story-loving creatures, and each of us has thousands of stories of our own that we collect over the course of our lives. They can be based on our own experiences, or they can be from our observations of others. Or we can make them up as we go along. But we have them. We use them. We rely on them to no end.

Yes… stories.

Earlier this week, I was chatting with an older Autistic man who spent time with younger Autistic people. He said he was really alarmed at how traumatized those young people were, how harrassed they were, how on-guard and roughed-up by life they were. These were young people who all had the advantage of knowing they’re Autistic, but it was such a burden for them.

😦

Major 😦

I personally don’t think we do a good enough job as a community, sharing our strengths and accomplishments… our joys and ecstasy. Autism for me is every bit as much about bliss, as it is about struggle — equal parts, I’d say. But the discussion so often centers around the struggle, perhaps because I think I’m going to get commiseration and support from others who know how I feel. Unfortunately, that’s seldom the case. If anything, it works against me. And I end up getting sucked down into the Pit of Despair, as I perseverate on the idea that somehow, somewhere, sometime, I might get some help.

I won’t… 93.72% of the time. Now and then, I will, but I spend far too much time working towards that 6.28% that’s occasional and intermittent at best.

So, where does that leave me? Sorta kinda where a lot of queer folks were left, back in the 1990s, when so many of us were coming out, but most of the media about being queer (especially movies) were so full of angst and pain and suffering. Suicide, too. Ugh. How many gay and lesbian movies (long before the concept of being queer took hold) showed us being miserable and downtrodden and better off ending our lives? To be honest, it wasn’t altogether unlike what Autism$peak$ has done. And while I’m not 100% on board with comparing Autistic folks to queer folks, all across the board, there are some pretty pronounced similarities.

  • Being different embarrasses our families.
  • They try to make us different — more like them.
  • If we’re lucky, they fail. If they succeed, we’re twisted into a version of ourselves we don’t understand.
  • Ostracism, misunderstanding, violence. Etc.

Anyway, this is a really long-winded way of saying I think the Autistic community could learn a thing or two from the LGBTQ+ community (and yes, we do overlap), especially insofar as the Pride movement is concerned. Celebrating our differences, developing our own culture and community, taking our place in the world just as we are, and having a lot of fun while doing it… There’s real power in that, I believe. And it’s where I hope we go with our Autistic community building.

I’m not gonna tell anybody what to do or how to do it, but I can do something in my little corner of the world. I can talk about my life in positive terms. I can share my triumphs and joys. I can really celebrate the successes of other Autistic folks. I can focus on the good, the strength, the fortitude, the brilliance. None of this takes away from the challenges we have — it’s merely ballast for my proverbial vessel as I sail the high seas of life.

There are so many wonderful, positive things about Autism that get lost in the crisis, anxiety, difficulty, drama, and shame of growing up Autistic. They get lost to parents, they get lost to us. They get lost to society, in general, obscured behind the ignorance and judgment. We go into hiding. Because it’s safe there.

And then, when we grow up, we can be so alienated, so accustomed to hiding, that our actual development isn’t recognized. Or people are so used to looking at us as they remember us, once upon a time, that they don’t give us the chance to shine.

I think that needs to change.

I can’t speak for anyone else, but I plan to change it on my side… do my best to unleash a torrent of writing about how absolutely excellent it can be to be Autistic. It might piss a lot of people off, because it may undermine their message about how we need help and support. But I’m not going to lose the good parts of my life, while I wait around for the government or some organization to meet my needs.

Certainly, it would help… but I think we can do more than that.

Well, I can, anyway.

Rebuilding my life with #AutismAwareness

school building in snow

It’s #AutismAwarenessMonth, and I’m already tired. Ha! Of course I am. Sheesh, the ongoing … onslaught… of misinformation, disinformation, and all these otherwise unaffected-by-Autism people weighing in with their observations… it all gets to be too much.

And yet, I can’t seem to look away. It’s like a train wreck. All month long. And it’s only the 4th of April. Good grief.

One of the really depleting things about this month, is that I become all the more aware of how much more difficult my life has been, because I had no idea about how being Autistic was affecting me, or what to do about it. I spent so, so many years struggling, not knowing what the deal was with me, not understanding that there was literally something distinctly different about me that put me at a disadvantage in some ways (and at an advantage in others). It wasn’t luck or happenstance. It was a structural difference in my makeup that set me apart and introduced specific challenges to me.

I had no idea. I had no awareness. So, I couldn’t manage my situation. I couldn’t adjust. I couldn’t find any patterns, because my mind was so turned around by everything that I didn’t know what patterns to look for. I couldn’t tease out the differences from one day to the next, and did that ever have an impact.

Well, that being said, now I know better. And now I can do better. True, I did not manage to finish college (despite earning 90 credits). Too much going on. Too much to overcome. Too little information on one and, and too much on the other. It’s rarely actually been a huge problem. With a few exceptions, where my advancement opportunities were limited because I didn’t have a degree, I’ve always managed to find good-paying work that let me make the most of my abilities. I have a “nose” for opportunity, and I’m really proactive and a dedicated team player, so I’ve always had that to fall back on.

But now I’m getting older, employers are relying on web-based resume intake systems, and without a degree, I can’t even get pasts the “electronic gatekeepers” to make my case for getting the job. Plus, if I want to change careers, which I’m thinking about doing, after 25+ years in high tech, I need a degree. Because taking credit for building out key features of a leading financial services website and optimizing technology just doesn’t have the same cachet outside this gilded cage of high tech.

I need something else to fall back on.

I’ve been looking for degree completion programs for years, but none of them were accessible for me. Either they were too expensive, or they were too time-consuming and the pace was dictated by the institution. I was expected to carry a consistent courseload for two years straight, which — if you’re me — is a clear warning shot across the proverbial bow. There’s no way I can commit to that workload with absolute certainty.

Can we say meltdown? ‘Cause that’s where I’d be — probably frequently — while scrambling to keep up / catch up. Call it Executive Function issues. Call it inconsistency. Call it what you will. It’d wreck me, for sure, what with my full-time job, caring for my dependent partner, serving on town boards, keeping my own interests alive, and keeping myself healthy and fit… on top of a degree completion program.

But I believe I’ve found a solution. I found a program that’s self-paced, that gives me credit for what I’ve done, and it lets me earn a degree in what I’ve been doing for the past 25 years. And it costs a fraction of what a traditional degree completion program would cost.

I’m a grown-up, with adult responsibilities and a full life. And I’m Autistic. So, I need to choose and act accordingly. I need to be constantly aware of my strengths and my limitations, to accommodate myself and not take things for granted. I took so much for granted, when I was younger, thinking that if I just kept pressing on in the same ways, I’d be able to eventually succeed. But I was doing things the way I saw all the neurotypical people in the world doing it. I tried to mimic what they did, and how they did it, assuming that I could just power through.

Untrue. I burned myself out, over and over. I overloaded myself, pushed myself to one meltdown after another, drank too much, got pulled into the wrong crowds, took the wrong jobs, stuck with the wrong schedule, and I got hurt. I crushed myself. And that was no good.

Now, I actually have a chance to turn this around, and that’s what I’m doing. I started the exploration process a couple of weeks ago, and I started the application process last week. I’ll work on my application some more today, since I have some time. And I’ll gear up for this process, the start of this new journey, with my limits clearly in mind.

It’s not that I’m going to let my limitations define me. Far from it. I’m just going to factor them in and manage them accordingly. If I know about my limits, and I know how they block me, it’s up to me to figure out how to either adapt or avoid them. If I’m in a position to actually do something about my situation (and I am), it’s up to me to handle things properly.

If my energy levels are dropping, I need to step away and recharge — and then bring myself back on point in the future.

If I’m getting overwhelmed, I need to step away and take steps to get myself un-maxed-out again… then resume what I was doing before.

If I’m able to work faster than the “norm”, then I need to kick it into high gear, because at some point, I may need to slow down. So, I have to plan and act accordingly, so I can keep ahead of things and make the most of my up-times to offset my down-times.

And so, I shall. With Autism in mind. Awareness. Acceptance. And action.

This next step (going back to school) has been a long time coming. I’m gonna make the most of it.

Back to my Favorite Flow State

green and purple aurora borealis over water and lights of town

Well, this is good. The snow has finally melted, the weather’s warm, and I’ve got a renewed spark in my life. March was a beast, I have to say. It really drained me, what with all the snow and all the logistics.

But now it’s April. It’s really, truly Spring, and I’ve got a boost of energy coming into this month.

Yeah, I know it’s Autism Bewareness Month. That’s not my favorite thing. But it’s also not the only part of my life. Autism is big, of course. It’s a defining feature of my overall makeup. But other people’s confusion about what Autism is (or isn’t), is not high on my list of Fix It priorities, this month.

I’m much less interested, right now, in adjusting other people’s messed-up conceptions, than I am in creating the kind of world I actually want to live in. For all the talk about Autism and suicide (and I’ve walked that fine line with my own ideations, over the years), I’m not hearing as much talk about Autistic people creating the kind of world we want to live in.

Yep, it’s easier to critique others’ work. Others’ world machinations. Others’ philosophies and approaches.

And I’m happy to do it, myself, now and then.

But the way I’m feeling these days, I’d much rather funnel my energies into doing things Right, instead of constantly bemoaning (which is what can I do so well) when things are done Wrong.

That being said, yeah… my writing and publishing is coming back online. I’ve had a really rough several years at my current job. And I’ve tried to get out a bunch of times. I’ve interviewed, talked to recruiters, and I even had a job offer, at the end of last year. But I stayed put, for some reason. I just couldn’t bring myself to leave — mainly because the shiny new job had little to no opportunity to work from home, which is something that I absolutely, positively cannot countenance.

I need to be able to work from home whenever I need to. I need to be able to relax, not be constantly interrupted by environmental intrusions, and I need to lie down and sleep, now and then, when it gets to be too much. I’m still able to keep on track with my tasks list. In fact, I’m even better able to, when I’m home, because it’s so much less stressful than being in the office. I can actually think when I’m at home. Imagine that… Get into the flow… Settle into the work… Get stuff done. Magic.

The other reason I won’t work for a company that doesn’t let people work from home (because they say people abuse it), is because if your people aren’t fully engaged and loving what they do, then something is wrong with your culture. And dragging them into the office to do your bidding isn’t going to make them any happier. It’s a hostage situation, and I’m not doing that anymore.

Nope.

Hm… I think I’ve digressed. Where was I…?

Oh yes! Getting back into the flow.

My writing. My publishing. Digging out all my old writings and putting them out there. I’ve got a bunch of writing that’s languished, over the past years. Books I’ve started. Books I’ve even published (under the name Loren Stone). I’ve published a handful of lesbian novels – erotic and otherwise – and I’m working on more. I just had an idea for another book that also brings in the Autism theme, and I like it. I like it a lot.

Of course, I’ve got to get organized. I’ve got manuscripts in various  states of completion in a bunch of places. Pieces built on other pieces. And then I get inspired and another piece comes up. I’ve got poetry, too. Lots of it. Stashed. In several manilla folders in the file drawer to my left. Holy smokes, I’ve got so much work in progress, it’s wild.

Of course, I get down on myself, because I haven’t “done anything with it”. I haven’t kept my Patreon up to date. I haven’t even kept my Lore Stone blog up to date. I’ve been intermittent and noncommittal at times. And I’ve toyed with the idea of just dropping it all and walking away, when it felt like Too Much.

But that’s just my Autistic self looking out for itself. I have to watch my energy expenditure, and I’ve got so much going on in my life, I have to make choices. Drop some things when they’re not working anymore. Back off on certain objects of intense focus when my inner resources are spread too thin. Follow the change of the seasons. And just be realistic about what I can — and cannot — do, when everything (and I mean Everything) gets to be too much.

So, I’m cutting myself a break. I’m getting out of the business of planning everything out so, so carefully. I’m a program planner by day for my professional job, and it pays the bills. But when I’m left to my own devices, I really just want to flow. Let it all go where it will. Let myself go where I will.

And that’s what I’m doing, right now. I may change my mind in a couple of days, but right here, right now, I’m cutting myself a break and letting myself off the proverbial leash. I’ve got too much writing waiting in the wings to get all “planny” about it.  This stuff has to flow.

Just like me.

It’s all gotta just flow.

Raised #Autistic – Lessons Learned

books hanging from bookstrapAll the talk about how Autism diagnoses have skyrocketed in the last 30 years, overlooks one key factor:

Once upon a time, the Autism Spectrum wasn’t pathologized. It was developed.

It was very much a part of life, and there were institutions and mitigators in place to help weave that neurotype into the overall fabric of life.

I was raised in an area that’s chock-full of Autistic folks. Is this abnormal? Not on your life. In fact, it’s the norm. And every aspect of growing up is/was geared towards training individuals how to be responsible members of the community. It helps that it’s a rural area, where everybody has to pitch in, no matter what, so nobody gets a pass to completely drop out of society because of any difficulties they may have. Society needs them, it’s made clear. And whatever they can do — in whatever measure — is not only needed, but required.

Take my aunt, for example. She just passed away last year, and she was probably one of the most “obviously” Autistic persons I’ve ever met. All the classic behaviors, all the classic traits… that was Aunt M. She definitely did not have an easy life, but she lived by a code that placed others first at all times. She had a quote on her dresser that effectively said, “Whatever sufferings I may have, others have it even worse. And in the end, the question is not how much I’ve gotten out of life, but what I’ve given to those who are struggling more than I.

That’s the ethos I was raised with overall, and I can tell you that Aunt M personified that, each and every day. She had her challenges, of course. My mom had to constantly watch out for her, from the time they were both young girls, till the day she died. She was bullied, she was threatened, she was abandoned. And she had intense issues with anxiety and social interactions.

But she lived her life. She lived by principles. And in the end, he had such an important place in life, her funeral was attended by close to 100 people, many of whom relied on her for many things throughout the course of her life.

I was raised in the same way — principles. Be a responsible member of society. Put others first. Realize that others have troubles, too, and rather than thinking about what I need to get out of the social equation, I need to put myself out there and be as helpful to others as I can. It’s not about me. Yes, I have intense suffering and challenges at times. Yes, my life is a non-stop parade of pains and joys — often so intermingled, it’s hard to tell which is which. But in the end, what I contribute to the world is far more important than what accommodations I get to secure my own happiness.

Now, you might dismiss this as being some lofty approach by someone who’s not impacted all that heavily by Autism. But you’d be wrong about that. Everything I have, everything I can do, it’s all been hard-won and paid-for at a steep price. And I’ve been around long enough to realize what a toll it’s taken on me, over the years.

Does that toll matter? Nope. The bottom line, for me, is what I add to the overall human equation. I’m responsible for my corner of the universe. I have to keep it clean and orderly and do my best to not be a liability towards others. I have to keep my own suffering out of view, because what I have to give is far more important than anything I feel I need to take.

All those years, when I was in excruciating chronic pain and some days couldn’t get out of the bed… the short time I was homeless… the times when I’ve had to quit jobs and move on, because the environment was so painful I couldn’t tolerate it anymore… Through all the meltdowns, the shutdowns, the touch-is-pain moments… The one thing that kept me going was that it wasn’t only about me. I had to get up and go to work to support my household. And if I couldn’t manage a full-time job, then I had to find a regular source of income that let me work part-time and still make enough to pay my rent.

The thing that carried me through all those years of intensity and hardship, was my upbringing by parents, grandparents, and a wider community who were all Autistic. Who knew what it meant to struggle, and who still pressed on and pushed me to deal. They didn’t let me off the hook. They kept at me, and kept reminding me of what was Right, what was Wrong, and urged me to do the Right thing. Even when it was impossible, they still demanded that I do my best. No excuses. Just get on with it. Yes, life is painful and awkward, but that’s what teaching and training were all about. I had to learn. I had to be taught. I had to be raised.

There was never the assumption that kids already inherently knew the right thing to do. There was the assumption that adult life is challenging and requires skill, and like any skilled endeavor, that takes training and practice and continuous discipline. The skills I have now, which have allowed me to live a really full life and experience so much that many people only dream about, they didn’t magically emerge from my pristine primal state. They were abilities that were identified, prioritized, and emphasized as the sort of thing that all adults do.

And there was no argument.

Yes, it was tough. Yes, it was challenging. Yes, I still have leftover “stuff” from all those years of training. I was enculturated into an Autistic society, and there were Rules and Regulations for everything. It was rough, at the time, but all the hard lessons have made it possible for me to live my life… regardless.

The skills I developed at just getting on with things, for putting others first, for making the effort to be a contributing member of society — even when I was disabled — made all the difference in the world. Society has a way of looking out for those who support it and contribute, and that’s always been my “safety net”, if I even have one. I make myself useful to others. I contribute. I’m not perfect, I’m pretty weird at times, I’m Autistic, I can be pretty off-putting at times. But in the end, my goal is to make myself an asset to the world around me, not only devote myself to getting my needs accommodated.

That’s all because I was raised by Autistic folks. Those were the Rules.

’nuff said.