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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How much has #television contributed to the #Autism panic?

television

I’ve been thinking a lot, lately, about how … abruptly Autism has seemed to have emerged on the public scene. So many people getting diagnosed, supposedly in “epidemic” proportions. “Autism wasn’t a problem when I was growing up,” people say… “It must be something new — vaccinations, environmental toxins, gut health, gluten, and more.”

I’m not going down those particular ratholes, because I think there’s another factor that’s really contributing, not only to the number of people who are getting diagnosed, but in the distress that we’re experiencing because we’re Autistic.

I think it has a little bit to do with the surge in pathologization (if that’s a word) of behaviors that have been around since the beginning of time. There have always been folks like is in the general population. But society’s acceptance of our traits has dramatically decreased, over the past 40 years. And that, I believe, contributes far more to the issues and challenges we experience, than any of the commonly blamed “causes”.

Society has never been super-accepting of outliers. My ancestors fled their homes many times over many generations, as a result of local people not wanting them there. For over 1000 years, they routinely had to move along to some other locale, because people didn’t like their language, their culture, their religion, their ways. Back and forth across Europe they went, chased from one country to another, because they just didn’t fit.

So, the human race has never been strong on the whole acceptance bit.

But now… I’ve noticed a massive shift in people’s acceptance levels of traits that I grew up with, which were never seen as liabilities in the place/family of my origin, which were simply seen as differences that gave you certain strengths, where others were weak — and vice versa. It’s not just Autism traits, either — flapping, talking fast and long about fascinating subjects, being sensitive to foods, needing to stim — it’s everywhere.

When I got into high tech, 25 years ago, I was an outlier. There weren’t many women on the technical side of the house, but people made room for me. I earned my place, weirdo that I was (and yes, I am a weirdo, and proud of it!). And there wasn’t the raging sexism that I see in high tech, now.

And I think television has had a hugely influential role in all of this. Because we’ve been inundated with all the messages, for countless hours, on countless channels, about how men and women are supposed to look and behave… for how “normal” people are supposed to look and behave. Television has provided a bland, one-dimensional template for everyone to abide by, creating emotional bonds between audiences and invented characters which are the product of a media industry that’s almost mind-bogglingly homogenous. Writers of color, Autistic writers, disabled creators, people who don’t fit in the mainstream, don’t have great representation there.

And it shows.

Personally, I have to wonder how much television people who freak out over the “Autism epidemic” actually watch. The folks who “light it up blue” and support A$… how many hours have they spent in front of the glowing box (or eyes glued to a device), internalizing all the subtle, one-dimensional messages about what it means to be a human being, and how we should behave? People who cringe at the different ways people present and identify, gender-wise… who squirm at speech patterns and behaviors that don’t match what they think are right… how many of them have had their social expectations set by all the t.v. characters they connect with each day and each night?

I have to wonder.

And I have to admit, I really despair, when I see what kinds of characters are on t.v., as well as in movies. For the sake of drama and an unfolding story, embarrassingly immature people are trotted out for our “entertainment”, their foolishness normalized, their vacuity standardized, their shallowness presented regularly as “how people really are”. It’s depressing. And when you toss in the music and laugh tracks and subtle ways creators and producers use to entice viewers and hold their attention… Ugh… even more depressing.

Over the past years, I’ve been watching less and less television. I watch a few shows regularly, but mostly I watch movies (which are slightly better, but also have their shortcomings). And the more time I spend away from it, the more tolerant I find I am. That includes tolerance for myself. I’m not as intensely sensitized to the ways I differ from others (of course, menopause helps, because I’m no longer hormonally inclined to give a damn what others think). I’m more tolerant of others, as well. Differences don’t bother me, the way they used to — and the way they bother others.

Because my templates for acceptable human behavior haven’t been defined by a handful of white, middle-class collaborators who live in their own little bubble and work behind closed doors.

And I have to wonder, if more people just didn’t watch t.v. and let it tell them what it means to be human, how much more human could we actually become — and allow others to be?

All this “activity” makes me tired

It’s funny — I stepped away from national news and much social media, last week, needing to just take a break from it all. And when I came back, it turns out, not much has changed.

At all.

The same dramas are unfolding… and slowly, at that. The same concerns exist. The same people are fighting. The same problems are being “framed in narratives”, rather than being directly worked on by people unallied with any political agenda.

Life goes on.

I’m not sure how to feel about it.

One way I do know I feel, is tired. Very tired. And it’s a total distraction. I needed the distraction yesterday, my first day back at work in the office after a frenzied week last week, with all kinds of extra activities going on. And that was fine. I got a little bit of work done. Just enough to stay busy and sorta-kinda on track. But I also spent a fair amount of time frittering away my day chatting back and forth over stuff I don’t even remember all that well.

Maybe it helped. Maybe it didn’t. Dunno. All I do know is that life is much bigger than social media, and it’s much bigger than the news. There’s so much going on, right now, I can’t keep up, anyway. And of course I need to take care of myself.

And this is how I do it — take care of myself — by doing pretty much as I please, at the pace I choose. I basically do the bare minimum for me, which is “above and beyond” for everyone else. And then I take what extra time I need to recover and do what I wish.

I do feel guilty, sometimes, for slacking off. But nobody else is looking out for me, and my employer isn’t going to accommodate me, so I make my own provisions. And that’s fine

The rest of the world doesn’t bend itself to suit my needs. It doesn’t accommodate me or make special exceptions for me. I’m stuck in same churning mill that everyone else is, and since it takes a bigger toll on me, I need to make my own exceptions, carve out my own sanctuary, design my own life around my own needs.

I do the bare minimum for me… and that’s “above and beyond” for everyone else.

Hooray for low expectations! They rock. They’re my rock in a hard place. And believe you me, this world we inhabit together IS a hard place for me and others like me.

I guess the trick really is finding what works, and working with that. And not feeling guilty about taking care of myself, in the process. It’s been a few years, since I started really guarding my own interests… doing the bare minimum… not wiping myself out “for the cause”… and it’s taken a lot of getting used to. Because there’s a part of me that wants to wear myself out for the cause. There’s a part of me that believes that unless I’ve completely depleted myself, I haven’t done enough. And there’s a part of me that believes that I’m entitled to automatic equitable compensation in exchange for my sacrifice… that the universe provides for those who render good service.

Turns out, I’m pretty much wrong on most of those counts. All of my expectations really hinge on the presumption of Justice (capital “J”) but as it turns out, the vast majority of people are much too overwhelmed, themselves, and much too distracted to promote that thing called Justice, or even pay it much mind.

I’m on my own, if  I want equity and proper remuneration. I’ve got to pull the necessary strings, apply the necessary pressure, take the required steps, in order to get what I need.

And sometimes I have to take it.

Like I took a break last week from the news and social media. I’m probably going to cut out the news again, this week, because coming back to it is like taking up an old bad habit and remembering why you quit, in the first place. The world will continue apace without me. And by and large, there’s not a whole lot I can do about it. Except worry.

But that’s just tiring.

So, enough.

Last-minute Christmas shopping went well, all things considered

Big box store interior with people walking through aislesMerry Christmas, everyone. I’m omitting the exclamation point, because there have been far too many of them, lately, and I’m in the mood for something more … subdued.

My list-making and task-charting worked, and I didn’t have to really think about what to do next, since it was all written down. That left me more energy and resources to focus on the tasks at hand and really give it all I had. I found some additional presents that I was so happy with — some of them I only discovered after a couple of passes through a certain section of the store. I had to keep doubling back, because I kept getting distracted by everything around me. But after I got used to the surroundings and got my bearings, I found some great stuff.

I went back to one of the stores I’d visited with my partner, a few days ago, to see if there was anything additional I could find. Sure enough, there was. I was more successful this time than last, because I was working alone, I didn’t have to keep her situation in mind, and I was more familiar with the store.

So many people were out yesterday… for a Sunday, it’s unusual. It was pretty disorienting. But then, it was Christmas Eve, so…

All in all, I had a pretty positive experience. I still got worn out after only a few hours, though. And it took me longer to do some things that I would have liked. I also would have liked to not see some of the holiday decorations at one of the stores I visited.  They were pretty scary, actually. For some reason, a buyer thought it would be a good idea to cover the torso of a headless female mannequin with red or green glitter, and attach it to the top of a small Christmas tree. It was a little nightmarish.

Mannequin Christmas tree
For the record, people, this is not stylish. It’s a little scary.

The scary human-Christmas-tree-cyborg aside, yesterday was a good day for learning… about how even if I’m left to my own devices, even if I’ve got the day mapped out, even if I’m crystal-clear on what needs to happen, I still have my limits at this time of year. And no matter what I do to mitigate the effects of uncertainty and More Things To Do, I’m still going to be really taxed by the environment.

No matter what I do, no matter how much sleep I get, how well I eat, how well I take care of myself in general, I’m still going to struggle with external circumstances and the super-duper, pumped-up atmosphere of the holiday season.

And yet… I really do love this time of year. Driving around on the back roads, the skies were clear and the world was suffused in ice. We had a lot of freezing rain on Saturday, which glazed everything in 1/4 inch of ice. And on Sunday, as the weather cleared and the sun shone, and all the muted colors of the slumbering trees and dead grasses and frost and ice and snow stood out in sharp contrast against the blue sky with its passing whispy clouds, I couldn’t help but just love every minute of it.

I really do enjoy this time of year. I love the long nights, the quiet that comes after the storms, the weight of winter clothes, and the slower pace to everything. I thrive during the winter, when I feel like I can finally catch up with myself. And I literally feel at my physical best when I’m outside shoveling snow in sub-freezing temperatures. My body feels the most comfortable when it’s below 20 Fahrenheit  (-30 Celsius). My inner heater seems to kick in only at that temperature. And when it’s below zero (Fahrenheit), I really feel great. I don’t even feel the cold that intensely, when it’s that cold. I feel it more, when it’s around freezing. Then, it feels like it’s getting in my bones and shutting me down.

So, this coming week should be wonderful — it’s going to be in single digits for several days, and below zero at night.

Yeah, I love this time of year. But the whole Christmas season messes things up. Too many lights. Too much music. Too much shopping. Too many people. And interactions with strangers. Noise. Lots of noise, interspersed with sounds that I’m supposed to pay attention to. Movement. Unpredictable people not paying attention when they’re driving. Everybody with emotional issues. Money issues. Let loose in the world and insisting on talking to me. Ugh. I’m so glad it’s nearly over. I really just want to enjoy myself. Have nice meals. Get grounded. Chill out.

All this means I’ve got to make some changes. My partner and I agree that next year’s going to be structured very differently than this one (and years past). We’re going to do more advance preparation, buying presents ahead of time, getting better prepared, mailing things out weeks before we need to. Just being more mindful, early on, so we can really enjoy ourselves when the season “hits”.

Doing a lot of advance prep always seemed … wrong … to me in the past.  I didn’t want to think about Christmas, till it was right “on top of us”. I couldn’t get into the spirit ahead of time. But the older I get, and the more I appreciate the season, the more sense it makes. I can get the obligations out of the way up front. Put in the time and energy up front, so I can relax at a later point.

Doing it all at once may be in the spirit of the season, but that’s just not working for me anymore.

So, it’s time for a little change — a big change, in fact. And because both my partner and I are of like mind about this and can support each other, this is one change for the better that’s likely to “stick”.

It’s all for the sake of getting to really enjoy this time of year. That’s important.

And with that, I shall get into my day and enjoy this Christmas for what it is — another stage in the turning of the wheel that takes us ever on.

Merry Christmas, everyone.  I hope you have a good one.


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Last-minute Christmas shopping – I gotta do what I gotta do

big box store interior
Sometimes, it’s just unavoidable.

Ouch. We had a bunch of freezing rain, yesterday, which kept me inside… then drew me outside to break up the veritable ice-skating rink on my deck, stairs, and driveway… then knocked out the power for a few hours, last night.

Now the Christmas turkey I’d been thawing is “iffy”, and I don’t dare cook it up. The inside of the refrigerator probably stayed pretty cool, the whole time we were without power, but I don’t want to take any chances. I just don’t want to spend Christmas day sick — and neither does my partner, who’s even more sensitive to food stuff than I am.

So, it’s time to shift and adjust… make the most of my situation and count my blessings. Because I really do have a lot to be grateful for. That thought has to carry me through, because I have a full day ahead of me, this Christmas Eve.

I need to food shop. I need to visit some local stores to find some nice things for my partner. My go-to store was closed the other day, when spent the afternoon shopping. I made the best of it, but I still have to get some more presents for my partner. I’m not looking forward to wading into the stores, but it’s gotta get done. Nobody else is going to do it for me.

This year it’s so weird — I thought for sure that I had gotten her a bunch of things, but it turns out, I didn’t. She (in typical style) has gotten me a bunch of things. I ask her not to, every single year, because A) I really don’t need them, as I’m trying to simplify my life and actually have less stuff, and B) it’s a setup for a reciprocity nightmare. She expects the same level of “gifting” from me, as she provides to me, and it’s a set-up for failure. I’ve ended up melting down more Christmas mornings than I care to think about, because of the pressure — and my inevitable failure. I try and try, and I think I get it right… but then I don’t. And it’s crushing. For her, for me, for the whole experience.

Ah, well. That’s just one of those things.

At least I have today to redeem myself.

And so I shall. I’ll map out my route, find stores along the way that are bound to have what I’m looking for, and I’ll be thoughtful about it. Part of the problem with shopping before, was that I had to take care of both myself and my partner. She’s got mobility issues, as well as some cognitive issues, and when she’s left to her own devices, unfortunate things happen — like her losing the lenses from her glasses and not even realizing it till much later… like losing a glove… misplacing her wallet… slipping on ice… forgetting something… getting hurt. I have to be on high alert — especially when we’re out in public where everyone is shopping and milling around. It’s already demanding for me, and I’m stretched to my max. But I have to stay on point for her, as well. Because that’s how I roll. I need to take care of her, as well as myself.

Today, though, it’s just me. I can move at my own pace (which is much faster than hers), and I can get some stuff done. I’ll chart my course, figure out where to go and when to go there, I’ll choreograph it down to the quarter-hour, and I’ll just git ‘er done. Then I can come home, put up the food, and relax. Chill. Take care of myself. Take a nap. Wrap presents. Just get into the Christmas spirit in my own absolutely autistic way.

See, that’s the thing — when I’m allowed to do things in my own way, and I can leverage my strengths, things can go great. But when I have to accommodate others and go at another person’s pace in the non-autistic world, it’s really challenging for me. It’s good practice to accommodate and help others who need it, and it’s good practice for me to interact with the non-autistic world — sort of like a martial art — so it’s been very beneficial to my character. But there are times when I just need to go off by my autistic self and get stuff done in my own special autistic way.

Got my list, and I’m checking it twice. The year’s been full of naughty and nice behaviors, but all is forgiven for the next week or so. Then the wheel of the year stops turning, Yule sets in, and I can settle in, as well.

I’m sure next year will have lots to keep me occupied. But right now, today is what matters most.


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Settling into December

path across field and through village to Alps

This is how I’m feeling, right now. I’m actually in a very good space, after having  been incredibly busy for the past few days. I’ve got things some important things sorted out — and that’s taken a lot of pressure off me. Sweet.

I’ve got my back yard all raked and mostly free of leaves. My front yard just needs to be raked, but I’ll be able to do that in another hour or so, when the sun is up and I can see what I’m doing. I got my car inspected yesterday. And I’ve made up my mind about a conundrum that’s been dogging me for several weeks, now.

The biggest “win” was changing my annual physical from next Monday afternoon to this Friday morning. I need to get certain measurements taken, so I can get a discount on my health insurance. U.S. insurers are all into “helping” us manage our healthcare, which really means they’re funneling us down a path that they’ll pay for, and that they approve of (saints preserve us). I can save $700 a year, if I record my blood pressure, blood glucose, waist measurement, and a handful of other biometrics… do a health review and identify some steps I can take to improve with the company’s on-site health and fitness consultant. It’s tiresome and feels intrusive, and I object to it on principle. But … $700. You know?

Fortunately, I’ve managed to keep my most serious ills out of the official system. Nobody believed me, anyway, when I told them how much pain I was in, for so many years. Nobody believed me about a range of other health issues I’ve had. It made it much harder for me to manage my situation, but it also forced me to improvise and come up with genuine, lasting changes that have solved many of the issues at the root.

No doctor could have — or would have — gone down the routes I’ve taken. And even the ones who helped me, here and there, often doubted my approach. Until they saw it actually worked — and better than what they’d suggested. Ha.

Anyway, switching my appointment from Monday afternoon to Friday is a Really Big Deal for me. I have the day off work on Friday, and my appointment is at 10:30 a.m., so doing the fasting thing for my blood test won’t be a problem. And I won’t have to take time off work and deal with rush hour traffic, so that relieves another couple of huge stressors. Yeah, this is pretty big for me, even though other people wouldn’t think it was such a huge deal. But It Is!!! And I’m so happy and relieved that it worked out.

This month, I have every Friday off work, as well as the Thursday before Christmas. Then I have the week off between Christmas and New Years. This is the first year I’ve ever had this, and it is really wonderful. It takes the pressure off in a big way, and that’s good, because I have a bunch of stuff I need to take care of — get some bodywork done on one of the cars, and then get it inspected. Christmas shopping. Coming up with gifts I actually want for myself, so I can tell my partner. Cleaning my study, which has become a storage area for all the reading materials I’ve been meaning to read. Catching up with my reading. Catching up on my exercise. Catching up on my sleep. Catching up with my writing. Catching up, period.

It’s amazing what a little time off will do. This full-time working stuff is not for me, to be quite honest. But here I am… until further notice.

Anyway, this is a month for me to settle in and prepare for the New Year. I have Stuff I Want To Accomplish, and it looks like it’s actually going to get done. That makes me very happy. Very happy, indeed.

Now, off I go on another “leg” of my trek to the far metaphorical mountains, where my destiny awaits.

Systems are gonna save my a$$ today

interlocking cubes
Oh, my heavens, do I feel terrible today!

I had a really busy weekend, starting with an autism conference where Temple Grandin was the keynote speaker, and there were three workshops (and lunch and coffee and water and snacks). It was great hearing Dr. Grandin speak in person, and I really appreciated a lot that she had to say — especially about the importance of getting autistic kids working when they’re young, say at 11 years of age.

I know I was always “worked” as a kid — in my family, you pitched in and did your part with the gardening, weeding, yard work, and so forth. And that translated to doing yardwork for neighbors and doing a paper route when I was 12. I have worked since I was 12, really, holding down a long series of part-time jobs when I was in school, and then seamlessly transferring to full-time work after I left (er, dropped out after 4 interminable, traumatic years of) college.

It was just done that way, when I was growing up. You just worked. Everybody worked. It was non-negotiable. So, hearing parents now talk about how their kids aren’t able to get jobs… I just don’t know how that happens.

Anyway, after that, I went to a workshop talking about research done on the “invisible generation” of autistic folks — late-diagnosed individuals over the age of 50, who have spent their/our lives pretty confused and confounded and often disadvantaged because of dealing with that whole autistic business in a world that frankly just doesn’t give a sh*t about understanding us, let alone accommodating our “variations”. I almost broke down in tears a couple of times when the researchers were presenting their findings. I was in a room full of people, of course, so I didn’t. But I came close. Especially when they were reading the commentary.

The overarching thought that came out of that session was:

Nobody understands just how brutal life has been to some of us.

Nor do they really get just how strong we truly are.

Or how fortunate they are, that so many of us have learned to overcome what they’ve thrown at us.

It’s their loss that they don’t know… but we’re the ones who pay the price.

Sheesh. People really suck, sometimes.

Well, anyway, after that, it was time for lunch, and surprisingly, we were all herded into a large room with two long tables full of sandwiches for us to choose from. I prefer gluten-free, and I’d marked that on my registration form, but apparently, they didn’t accommodate that. The way the form was presented, it looked like I’d have a choice of specific lunches. But everybody was all just thrown together — three mini-sandwich options, a bag of chips, and a cookie.

😦

For someone who’s trying to avoid gluten and processed sugar and processed foods, in general, it wasn’t a peak experience.

After that, my experience got a little worse. I attended a workshop on employment, and the speaker was a “transition specialist” for autistic folks in high school (and college?). She was all about the Disability of Autism, deficits in Theory of Mind (if you read this blog much, you probably know what I think of that), and pointing out “inexplicable” responses by young autistic adults to her directions.

I found it a little insulting, to be honest. Fortunately/unfortunately, my processing speed was slower after that lunch (plus, I was really tired from working full-time for the four days prior), so my outrage wasn’t very well-defined or articulate. I considered approaching her afterwards and introducing myself as an autistic woman who’s been fully employed since 1988, but there was a line. And she had a really bad cold. I wasn’t taking any chances getting sick from her, especially since she seemed pretty set in her ideas and there probably wasn’t any chance I’d make a difference in that moment.

Maybe I’ll send her an email.

Or not.

The last session I attended was “Understanding Gender Identity and Sexual Orientation as it Overlaps with Autism: A Strengths Based Approach”, but it turned out to be about being trans and autistic and what kinds of issues autistic trans folks face everyday. In terms of being awareness-raising and informative, I give it an A+. The problem is, it wasn’t what the program said it was about, and by the end of the day, I literally couldn’t switch gears and adjust to the disconnect between my expectations and the reality of the situation. So, I felt like there was a void left that I really regretted.

It surprised me a little that the autistic folks who were presenting would change up the structure and nature of their talk. They’re clearly on a different part of the spectrum than I, when it comes to that stuff. If I were doing the talk, I’d hew to the line so literally… But that’s me.

Saturday was full. Yeah. Then I had to do some chores at home and go out and pick up supper. I got in bed early and slept like a rock for nearly 10 hours, which was a rare treat.

Sunday was a jam-packed sprint, as I tried to catch up on everything I’d not been able to do the day before. Getting my job-search stuff together. Coordinating other projects I’m working on. A whole lot of yard work. Plus, taking down old Christmas lights and putting up new ones. Getting the ornaments out… heck, just finding where the ornaments were, to begin with… Getting the outside tree situated…

We’ve had our Christmas tree outside every year, since a few years ago, because of sensory sensitivities. Ironically, it’s my partner, not me, who’s sensitive to the smell of the tree. She can’t handle it. And I get it. So, I set up the tree on the deck, where we can see it from the kitchen while we’re cooking and washing up. It’s nice there. I string lights on it, and it makes a nice colorful glow in the dark.

After that last rush, I made us some late brunch, and then we watched football all evening. Our interests in t.v. have really diverged over the past years, and football or other sports are about the only things we can watch together without annoying one of us. It works.

So, anyway… systems.

That’s what I was going to write about.

As a result of all that excitement over the weekend, I’m pretty much shot, today. Fried. Shaky and hypersensitive. All my sensory stuff is whacked out, and while my eyesight and hearing is ever so keen, and my tactile defensiveness is really up there, I still feel like I’m floating in an electric bubble, with all my movements feeling like they’re 2 seconds behind my impulses. My body is numb and tingling, as it gets sometimes when I’ve been whacked out on adrenaline too long.  And I’m having a hell of a time typing. It feels surreal. (did I say that before?) like I’m enveloped in a thick blanket of goo that’s slowing me down, but amplifying my every sensation at the same time.

Not that I can accommodate my own limitations today. I have to get my car inspected. Its sticker is 4 days overdue, and I can’t afford the ticket. I have to get my work done, which involves a lot of data analysis and thinking really hard. I have to change my doctor’s appointment to early in the morning so I can get my blood glucose tested while fasting, so I can get a discount on my health insurance. And I have to prepare for a presentation I’m doing tonight. It’s gonna be a long day, and not being able to type is a real problem.

But I have my systems to keep me going, keep me on track, and make sure I’m getting everything done. I have my email, my calendar, my reminders, and my checklists. I have my to-do priorities, and I have my pace pretty well figured out. All I have to do now, is follow my own plan. If I can do that, I’ll be fine.

Put myself on autopilot, keep myself hydrated, keep going, and hope for the best.

Thank heavens for my systems.

More work… looking forward to winter

leaves in trees
Just hanging there. Taunting me…

It’s November. Nearly halfway over. And the leaves are still hanging on my trees. I need them to fall, so I can rake them up and get on with my life. I don’t mind raking. All my neighbors either use leaf blowers or they drive their riding mowers around their yards, sucking up the leaves into the compartment behind the mower.

I have a leaf blower. But I hate it. It’s loud. I need to get some ear protectors for when I use it, but better yet – never use it at all.

Fall is work time for me. Cleaning up the yard, raking, cleaning out the garage. And of course, finishing up the year at work. I have to be on a conference call in another 30 minutes — 8:00 a.m. on a Saturday is not my favorite time to be working, but we have work that needs to get pushed out to the world, and this is just part of the whole scene.

I also get a break for Thanksgiving week, as well as Christmas week. I get full weeks off, each time, which is pretty amazing. In past years, I had maybe one extra day off before Thanksgiving, and another day off after that. And for Christmas, it was always a challenge trying to juggle work and holiday celebrations. Combined with lots of driving to see relatives, various holiday gatherings with friends and workmates, etc. etc.

Not this year, though. This year, I get a break, which will be most welcome.

And I’m going to make the most of it.

I’m really looking forward to this winter, I have to say. The darkness, the cold… When it gets below freezing, I feel the best. I actually feel much better, the colder it is. If it’s just above freezing, it feels cold to me. I think my internal heating only “kicks on” when it’s bitter cold outside.

Later, after my call is done, I can go outside, maybe do a little more raking (even though all the leaves aren’t down, yet), and run some other errands. I’ve got a list. Of course I have a list.

I also have a handful of other things I need to do. Like shop for food and visit my friendly neighborhood health food store to pick up non-mainstream health supplies. It will be good to get out. I’ve been practically merged with my work laptop for most of my waking hours, for the past 5 days, and this morning will be more of the same.

I could really use a full day off. Heck, I could use two days off, where I don’t have to do anything for anybody else, and I can move at my own pace. But that’s not going to happen for another week, at least. No, wait – it’s going to be longer than that, because Thanksgiving week, I’ll be traveling to visit family several states away. So, it’s more like three weeks, till I catch a break.

Even then, I’m not sure it’s going to be very relaxing. Because these deadlines I’m on right now are leading up to new features and functionality on my employer’s website, and that will keep me on my toes, tracking how it’s going and reporting in to people On High about what’s good, what’s bad, and what needs to change.

What a pain in the a** it all is.

Well, anyway, this is what I get paid the big bucks for. And I’ll just need to find a way to manage this whole thing and spin it properly so the People In Charge continue to have full faith in me. I just need to come up with good systems for reporting, so I don’t have to constantly scramble to keep the People In Charge appraised of what’s what — just let the systems run themselves and report out from there.

Oh, that reminds me… there’s something else I need to do for Monday. I promised someone I’d get them numbers. Guess I should do that.

I’ve digressed.

I have a lot going on. It’s overwhelming, if I think about it. But if I just keep my lists and I take good care of myself (extra rest, not worrying about getting everything perfect all the time), it’s totally do-able.

I just need to do what needs to be done. And that’s something I do really well.

So, that’s something.

Now, if only those leaves would fall … before the snow comes along.

Using all this energy *in* my favor – not against me

traffic jam taxi cabs in new york city
This is pretty much how I’m feeling, these days. Jammed up.

Blocked.

Stopped in traffic, when I should be moving forward, consistently, cleanly, systematically.

If I were left to my own devices, I could totally do that.

But … people.

People and logistics. And politics. It’s all blocking my path. And it’s exhausting. So, I don’t have as much energy to get all creative ‘n’ that and come up with innovative new ideas. The best I can do is slog through. And for this Autistic, that’s about the worst thing anybody can ask me to do.

I’m a sprinter. As well as a marathoner. And I need to sprint periodically, to really stretch myself and get things accomplished. Right now, I’m stuck in the herd with a bunch of non-Autistic folks who have ulterior motives and political agendas.

And it’s next to impossible to get anything done.

How frustrating.

Well, it’s not all bad. Once I get done with my whining and complaining, I can see just how much of an opportunity this is for me. I’ve been wanting to make a significant change in my life for some time, but I’ve held off because I could always tolerate how things were. I’m not talking about being satisfied and fulfilled and doing my best work. I’m talking about just not being too depressed by my situation to move, and being able to maintain at the most basic level to “pass” as someone who’s happy and productive and content where they are in life.

All that acting gets tiring.

So, being in this stupidly impossible situation is giving me motivation to do something about it. And I am. I’ve gone through my projects list and picked a few that I’m going to complete over the next year — and a few that I’m going to focus on through the end of the year. I do well with deadlines, especially when I set them. And I have to say, my methodology and my approaches are really, really good. I generally can’t pull out all the stops and really GO with it, around the people I work with, because they just don’t operate at the same level as I.

That’s not me being arrogant or egotistical. It’s me being honest. I’ve worked in too many high-stakes positions before, with companies that were at the top of their industries, and I’ve been doing this a long time. So, I’m just trained that way. Many, if not most, of the folks I work with are 10-15 years younger than me. They haven’t been through the “meat-grinders” that I have. They haven’t been worn down to nothing, burnished and polished, quite the same way I have. And it shows.

And there’s very little I can say or do that makes any sense to them, because they don’t have that history and that perspective.

So, I just do my own thing in my own way. I inject every bit of professionalism and experience into my own projects, that I miss on a daily basis. Because I’m a coder and a user experience designer and a tester and a sys admin, I can set things up for myself that meet my standards and make sense to me. Every bit of laxness, every bit of excuse-making and risk-aversion I experience at the office, I counteract with my own work on the side. And that’s the one thing that saves me, really. It does my spirit good.

Some people have kids they live for. They’ll go through anything because they love them. I suspect that’s one of the reasons that people I work with are so willing to tolerate all the B.S. that takes place each day — they’re doing it for their kids. Well, I don’t have any kids. All I have is my work, and the fruits thereof. Sacrificing my sanity for the sake of … anything … well, that doesn’t make much sense to me.

So, rather than letting it bother me, I just channel my frustration into other things.

And get on with creating the kind of work and life I want to have.

If the rest of the world can’t accommodate me (and they can’t/won’t), I’ll carve out a space for myself. Everybody else can do what they like.

I need to do what I like, as well.

And that’s that.

Another week goes by…

It’s Tuesday. It feels like Friday. I’m churning towards a Big Deadline at the end of this week, and then another one next week. And then the holidays hit and it’s time to drive down to see two sets of families in two different states, each of them a day’s drive apart.

Oh, joy.

Actually, I’m mostly okay with all of this. I’m just maxed out. Frustrated and over-extended and super-sensory.

Which means I need to be careful… very careful… Because the last thing I want, is for all these deadlines and this frantic work situation to wreck my holiday season. I only get to see my family once, in the next 2 months. We used to drive down for both Thanksgiving and Christmas, but that stopped years ago. We both got too old to run all over creation. And – surprise – it turned out to be pretty awesome to have one of the holidays to ourselves.

Silence. Peace. Our own schedule on our own terms. Glorious.

And this year promises to be even more glorious, because work has an enforced shut-down over the holidays. Between Christmas and New Years, nobody is allowed to work (oh, except for the people who keep the IT systems running and keep the money coming in – they never really get time off). So, not only will I have that time at home on my own schedule, left to my own devices, but I also won’t have to juggle work and “alternate” schedules with all the people who are taking two days off here, three days off there, and puttering around in between.

I’m really looking forward to that. For sure.

It will give me time to catch up on my reading. And my writing. Especially my blogging, since that’s really suffered in the face of all this work. I haven’t been around much at all, between being overworked, and then having to catch up with myself, getting pulled in a million different directions, and also helping my partner with a bunch of stuff she’s got going on. I honestly don’t know where the time goes. But the volume of work, as well as the intensity levels of Every . Single . Day . has all just been ridiculous.

Deadlines. Harumph. Please.

I’m not even sure why I care so deeply about all of it.  I mean, it’s not like The People In Charge really give a damn about me and my health. It’s not like anybody gives a damn, period, about the challenges I face. Over the weekend, I realized — for real — that the only presence in my life that is actually 100% on the same wavelength as me, is my body. I love my friends and family, but they have their own challenges, and my body is the only presence my life that is 100% attuned to me, that can literally read my  mind, and that can — and will — respond to me in ways that are all about me, every single time.

The thing with people — and I do love and care for the folks in my life — is that their lives are circumscribed by their own constellations of dynamics… which have very little to do with me. It’s like we are all steering our proverbial ships by very different stars in the sky. Sometimes we cross paths. Sometimes we head in the same direction. But really, we’re oriented in our own ways that could easily have nothing to do with each other.

I think about this a lot, as I age. We live in a time when everybody’s supposed to be so connected and social, but we’re less connected than ever. Sigh.

Oh, well. It’s time for my second breakfast. My schedule is a little thrown off by the time change, but I’m adjusting. At least I have an “extra” hour in the morning. And I absolutely love the long nights and cold weather. It’s so much better for me than summer, with all its light and heat.

So, that’s something to be grateful for.

Now, back to work. I’ve got a deadline looming.