Am I going to be able to handle this? Do I have a choice?

I’m in a modified “bull-leaping” state today. I’m getting ready for an extended trip with my partner, and she’s not doing well – physically, emotionally, or cognitively. She’s intensely anxious about the trip, where she’ll be speaking at an international conference. It’s a great opportunity, but with over 5,000 people there… yeah… it’s overwhelming.

So, there’s that dread/excitement.

And then there’s her physical health, which is not good. She doesn’t exercise. She sleeps a lot. And she spends most of her waking hours in bed looking at Facebook. She’s got mobility issues from arthritis and sheer inactivity. Muscle atrophy and all that. And she’s intensely allergic to, well, just about everything.

And then there’s the emotional piece. She’s all over the map. Cognitively, she’s been declining over the past few years, and with that comes amped-up emotions. Lots of fear. Sadness. Frustration. The whole nine yards.

So, it’s become increasingly challenging to live with her, deal with her ups and downs, and also handle all of the extra work of literally taking care of her. As the years pass, she’s less and less able to take care of herself, which I haven’t exactly helped because of my own rigidity. If she does things “wrong”, I have a tendency to flip out, and that keeps her from doing what she needs to do (even if I think it’s wrong – and, for the record, it is).

Autism has not helped us, in this respect. And as time goes by, and she’s increasingly dependent on me for so much, I feel the sting of my own Autism even more. It’s impairing, at times, this way I am. And just trying to keep up with everything – including increased business trips – really strains my patience and my endurance.

I’m a workhorse, though. I put my head down and soldier through. I make it happen. Because I can’t see any other way. And I might as well get used to this, because I’ve promised her I will never, ever put her in a home. And I won’t. People tell me I’ll reconsider that, on down the line, especially since she’s considerably older than me, and just when things are starting to fall apart for her, they’re starting to come together for me, according to mainstream standards.

But I can work around this. I can work with it. I don’t have to be flying all across the country to seek my fortune, like others expect me to. I don’t even want to do it, to be honest. I’d rather just stay home and work on my own stuff and spend time with my sweet partner.

It still gets to me, though, how limited support systems are for people like me. Those of us who have a unique constellation of qualities that make living in the world-as-it-is extremely taxing, and who have specific needs that aren’t typically addressed by the usual offerings… well, we’re kind of out of luck, in many respects. If we’re “too functional”, we get accused of just wanting attention. If we’re really impaired, we get our agency taken away and we’re treated like wards of society. If we’re on-again-off-again, we can’t really ask for help, because while we may need help one day, we may not need that the next.

It’s so frustrating. It’s maddening. Sometimes I just need help, but people’s own issues get in the way of them being able to be genuinely helpful.

Either they feel all sorts of pity for me, because I’m “impaired”.

Or they feel disdain, because I can’t do for myself.

Or they take it all in, watch closely, and then go talk to other people about me. That’s not helpful at all.

Gossip. Anxiety. Fear of perceived weakness. Total inability to treat others with dignity and respect, unless they’re just like them.

It’s worst with my family. Both sides are a problem. My family is a problem, because they love to gossip and judge and they don’t get the variable abilities thing (even though they’re so Autistic, it’s scary). My partner’s side of the family is so judgmental and they don’t treat her well. They make fun of her. They act like it’s the end of the world, if she just can’t keep up with everyone. They’re so busy going a million miles an hour – to where, I don’t know, because ultimately, they just end up back on the couch watching endlessly mind-numbing television – and if you don’t keep up!!!, well, there must be something wrong with you.

It makes us not want to be around any of them. Which is why we probably won’t make the godawful marathon trip to see them over Thanksgiving and/or Christmas.

People. Hrmph.

But I digress. The first task at hand is to finish all the errands in preparation for the trip, get my partner up early enough that she has time to take care of herself, pack, and make sure we have everything we need in the van. I’ve got the battery for her power scooter charged, and that’s good to go. I really do need to develop better systems for taking care of both of us. I’ve been resisting doing that, because it feels like capitulation. But screw it. I’ve gotta come up with some reliable supports for myself and make sure I’m up to the years ahead — however many those will be.

Caretakers often have their lives cut shorter because of the stress of caretaking. But I can’t let that happen to me. Somehow, someway, there’s got to be a way to engineer this properly.

And so I’ll do that. Through logic. Reason. Perseverance. And all the faculties I have at my disposal, which are many and various.

Main thing is to get enough sleep. If that doesn’t happen, everything falls down.

But enough of that. It’s time to kick this machine into gear and motor into the fray.

About that Walk…

I was supposed to walk, this past weekend. Every single day of my three-day weekend. It was supposed to be glorious. Delightful. Indulgent. Quelle luxe! And inevitable.

That’s what I do on long weekends, when everybody’s off work on a Monday, and things are quiet around town. Families head north to the lakes and mountains for the federal holiday. Those who stay behind either head out to Lowes and Home Depot to pick up supplies for their gardening and home improvement projects, or they throw the kayaks on the roof racks of their SUVs and head to the nearest rivers. They run. Cycle. Hop on their Harleys and roar down the open roads. People scatter on those weekends, and that keeps me close to home.

I have my walking routine down, based on years of experience. Preparation is simple, straightforward. Practical. I change into my favorite walking clothes: a pair of baggy, ripped-up cargo shorts with enough pockets to comfortably hold keys and phone and tissues and earbuds and bug netting and a few pieces of candy… with a soft blue-green t-shirt worn over an even softer white undershirt… all of this over a comfortable sports bra and underwear that won’t chafe or bind. I hang a medical alert tag around my neck to make sure folks know whom to call if they find me collapsed by the side of the road, and there’s my trusty baseball cap pulled snugly on my head. And — at last — my sandals. It’s now warm enough to trade socks and lace-up walking shoes for those sturdy vibram soles strapped to my bare feet with velcro, leather, and some sort of finely netted fabric. I always know that summer is here when I can pull on my sandals. And I rejoice. I grab an apple from the fruit bowl, wash and wipe it dry, grab my small set of keys and maybe a piece of candy or gum for later, and head for the back roads.

I had my routes all mapped out, for the three days. Nothing fancy. Just the usual. With extra time to do the full circuit. I’d head down the road for a mile, past the “McMansions” built on the high hill facing a breathtaking view to the west… careful round the bend at the convergence of three roads where people always take the turn too quickly… walk another two miles under thickening forest… turn left again and walk a quarter mile past the mix of old and new houses, farms and single-family dwellings with their neatly trimmed lawns… up a slight incline, across the secondary road that’s full of motorcycles and bicyclists when the weather is nice… trudge past the town line sign… and disappear down the horse-farm-lined road, where people are too busy working on their gardens or cars or property to notice me passing by. At the stop sign where the road “T”ed into another, I’d about-face and head home. Or I’d get adventurous, take a right and keep going, till so much time had passed that I had to turn around to get home before dark.

At last, after weeks of overwork hunched over a laptop for 10 hours at a stretch, I had enough time of my own to extend my route into an extended adventure — to find out what’s around the corner that’s normally my turnaround point. Enough time to keep going. Keep walking. Sunglasses would block the sun. A baseball cap would shade my eyes and keep the bugs off. And if the bugs got to be too much, I’d have my netting to pull on over my cap and at least keep them off my face and out of my nose and ears. I had three days off work. Time to rest. Time to relax. Time to walk.

Disappearing that way on weekends is one of the things that makes my weeks tolerable. It dissolves the work-week like nothing else. Walking. Just walking. Doing nothing “productive”. Not talking to anyone on my phone, not listening to music, not planning or executing or planning to execute. Not even dictating ideas that came to me along the way for use later on. Barely interacting with people as I passed. Socially isolated from passers-by in my apparent mission to Get Somewhere Soon.

My own little 21st Century heresy. Delicious.

I had it all planned.

And I almost made it.

Except, I didn’t.

Saturday morning found me gardening. The weather was perfect: cool and clear, with a breeze to keep the mosquitoes at bay. Originally, I thought I’d just stop by my community garden for a solitary, contemplative hour. I’d make sure the peas and beans were up, weed a little around the peppers and tomatoes, water the celery, then head home for a shower and a walk. I could do my errands later, after I got back from the road.

As it turned out, other gardeners were tending their plots at the shared space. So, of course we had to talk. Or rather, they had to talk, and I decided to oblige them. That was fine. They all seemed nice enough, and they needed to get to know me. It always surprises me when other people want that. Isn’t it obvious, I’m a wonderful, conscientious person who’s comfortable letting other people be who they are? Is it so hard to tell that I’m generous of spirit and non-judgmental, and people can relax around me, even if they’re not on their best behavior?

Apparently not. And it exhausts me, all these prerequisites for social interaction, as though any of us has the right to condemn another person for a quirk we don’t understand. To my Autistic mind, we should all simply let each other be, give each other space to be who and what we are, provided that we’re not harming anyone else. I don’t need other people’s approval, but others clearly need mine, and it’s so tiring, to convince them that either they already have it, or they really don’t need it from me, to begin with.

What is up with that? It makes no sense.

Figuring people out is an experience in extremes for me. Either I fail fantastically or get it right without even trying. The times when I fail, I am completely clueless about facial expressions, voice inflection, hints and mentions. I don’t pick up on conversational prompts, where I’m supposed to follow a statement with a question. If someone makes a statement, say, “It’s a beautiful day!”, then they make a statement. If it’s true, then no further discussion is needed. We’ve established it’s a beautiful day. And we can move on. To things like practical tips for keeping moths and slugs off my new plantings.

For that matter, I often don’t understand why people even bother stating the obvious. It’s confusing for me. Of course it’s a beautiful day! Water is wet. Wind blows. The earth spins. Big deal. Why in heaven’s name are they so excited about announcing the obvious? Then I have to remind myself that they’re probably socially insecure and they’re searching desperately for a topic of conversation that’s neutral, safe, non-controversial. So they can talk. So their voice vibrates their vocal chords, which stimulates their vagus nerve and soothes their fight-flight response. Some people have to talk, or they quiver with fear. I understand what it’s like to be constantly shaken, so I accommodate their need. And I convince myself to respond “Oh, yes! Just lovely! We’re so fortunate!” so we can have a few minutes of neutral sharing of something positive… and get on with our gardening.

Then again, I can sometimes pick up on other people’s natures right off, with that Autistic “sixth sense” that some of us have. I notice so much, at times, I don’t need to talk myself through the rationale of responding to inane observations. I don’t need to be psychic. Body language, pacing of words, shifting of weight, loudness of voice, personal space, facial expressions, eye contact, topics of conversation… it tells me more about them, than they probably want me to know. It comes in handy — and it sure would have helped, 40-some years ago when I was still learning.

They say Autistic people can’t “read” others. We have communication issues which are the most defining feature of Autism, they claim. Plain and simple.

I say, social interaction is never plain and simple. It’s an overwhelming embarrassment of riches for people like me — there’s so much personal / impersonal data to parse, and there are so many disconnects between what I observe and what people say it means about them, who can make sense of it all? If people simply acted and didn’t provide a running commentary about how they want to be perceived, it would be so much simpler.

So much simpler.

But nah – that wasn’t happening last Saturday morning. And four hours after I arrived, I was exhausted. I’d gotten to know seven of my co-gardeners, heard all about a dispute with the head gardener that one gentleman still resented, and I’d gotten a thorough introduction to the insecure overcompensation of the wife of the family who had the plot beside mine. All while, I did my best neurotypical impression — pro-active, friendly, outgoing, secure, experienced, invested in the community. Gung ho. I know how to do that. I was raised with community and gardening. I do an excellent impression of a seasoned, connected, all-organic caretaker of the earth.

And no one can hear me scream.

Sigh.

So much for my morning.

I walked out of the garden in a kind of stagger. It caught me as soon as I was past the garden gate and was able to drop the making act. The sun was hot. The mosquitoes were swarming. My head was swimming with all the interaction, along with a nagging sense that I’d said a few things wrong to people. Their intermittent sidelong looks told me I was veering off course, but damned if I could tell what I’d said or done that warranted the stink-eye. My mouth just kept going. Whatever you do, I tell myself often. Just stay in character. Carry on as though it’s all completely normal, and they’ll follow your lead. Just keep on keeping on. And I did. Like I usually do. Until I can’t.

Fortunately, I cleared the garden gate before I imploded. Lucky. Practiced. Shaking.

I drove home slowly, my head spinning, hands shaking, taking the long way back to avoid having to turn across dangerous lanes of oncoming traffic. No way could I go for my long road trek in this condition. Not on the back roads that are full of cyclists and power-walkers and drivers taking their classic convertibles for a spin while the weather is perfect. I’d have to have my wits about me, to get far enough down the road to disappear. And that wasn’t happening.

Not yet.

Run the errands. Eat lunch. Nap. I’ll walk later. That’s what I promised myself. And that’s what I did. Mostly. Mailed the package at the post office. Took the trash to the dump. Picked up some food at the farm stand down the road. Put stuff away around the house. Ate my lunch. Took my shower, then my nap.

But when I woke up, I was still shaky, and I just didn’t feel like going out on the roads. Not so late in the afternoon, when all the bugs were starting to come out en force. Bicyclists. Walkers. Joggers — sorry, runners. Drivers. And bugs.

No thank you. Tomorrow. I’d do it tomorrow, I promised myself.

And that’s what I’ve promised myself for weeks and months, now. I’ll take my walk after I get everything else done that needs doing. I’ll get out on the roads for a leisurely roam, once things are put in order at home. I want to. I really, really want to. With all my heart.

But it never seems to happen. At least, not the way I want, or even plan. The rest of my life demands my attention. Things have to get done, and if I don’t do them, no one else will. I don’t have the energy to explain to people how to do them properly — shopping and cooking and cleaning and gardening and making repairs around the house — and cleaning up after them is more tiring than doing those things myself. I’m tired, so tired, from the week’s work that’s so social, so “engaging”. I’m tired from keeping up, from working at not lagging, from all the role-playing and forced positivity that others reward so well. It’s the price I pay for inclusion. I pay the price directly, while it costs others indirectly, with my reduced ability to pretty much deal with anything. Anything at all.

Walking far enough to disappear… well, that’s become a luxury that my stingy, obligatory life doesn’t want to make room for, these days. Every now and then, I manage it… just a quick 20-minute walk in the morning, or a 10-minute stroll around the parking lot at work. But those long, meandering saunters… who knows when I’ll be able to do them next?

Something else will have to give, and that something shouldn’t necessarily be me. I’ll figure something out, of course. I always do.

If I can pass as neurotypical, I can do just about anything.

#Autism and its $TAKE-HO£D€Rs

Earlier this month, there was a conference on Autism research in Rotterdam, and out of that came some discussion of how to fundamentally change how we talk about Autism, as well as how we identify who’s playing what role in the discussion. There’s Autism Community (those of us on the Autism Spectrum), and there are Autism Stakeholders — researchers and clinicians who build their careers around studying us.

Cos (@autismage) on Twitter proposed

I’d call any #autism researcher or clinician a ‘stakeholder’, unless they’re #ActuallyAutistic. have an #autistic relative/partner, or do participatory work with #autistic pple. Those exceptions are ‘community’. Therapists (with same exceptions) are ‘stakeholders’. Very simple

And that got me thinking…
Of course it did.

At first, it seemed to me that anyone who’s Autistic would be a “stakeholder”, because we have a “stake” in the discussions, the research, the ongoing developments, and so forth. We’re directly impacted by them, and we stand to gain or lose, depending on how those develop.

I use the term “stakeholder” all the time at work when I talk about projects, and the meaning we have for it, is someone who is directly impacted by the outcomes of those projects. They’re invested. They’re affected. They have a lot to gain or lose from the results. Just like Autistic people who are deeply affected by all the developments in research and policy and public discourse.

We’re stakeholders, right?

Well, maybe…

Taking a closer look at the etymology of the word, it struck me that the original meaning of the word was the exact opposite of how I was hearing it used.

Folks on Wikipedia say:

Per Webster’s 3rd New International Dictionary 1: a person entrusted with the stakes of two or more persons betting against one another and charged with the duty of delivering the stakes to the winner 2: a person entrusted with the custody of property or money that is the subject of litigation or of contention between rival claimants in which the holder claims no right or property interest

So, the idea of a stakeholder has nothing (originally) to do with the actual stakes themselves. They’re basically an “escrow agent” of sorts, with no personal investment in what’s going on.

And then there’s the popular conception of stakeholder as “someone who holds a stake in the ground to claim territory”. That’s something I’ve heard a number of times in the course of meetings at work, and the spirit of it carries through, as though we were in the Wild West (per the NY Times🙂

… when Western land was made available to those who would work and live on it, a stake became a section of land marked off by stakes and claimed by the farmer. By extension, a grub stake was money advanced for food, or grub, as an investment or loan.

And here’s where it gets interesting to me, and it becomes more apparent to me that we really should differentiate between the Autism Community and Autism Stakeholders.

First, the idea that stakeholders don’t actually hold a direct interest in the Autism Community. True enough, I believe. They’re interested in us, and they make a career off us, earning a living thanks to our “puzzling” existence (sarcasm). They’re stake-holders, not invested parties with personal issues at stake.

And then there’s the second “Wild West” definition of stakeholders — which seems even more apropos to me, considering the colonialism at its core. The West was “opened” by displacing Indigenous peoples from their ancestral lands, and if you could get your hands on a stake, you could get a piece of the action. The DSM-V and other diagnostic tools pathologize and marginalize us, and they’re used to clear us out of the territory of our own lives in a very real way.  And then the “settlers” — people who have taken courses, completed degrees, and gotten certifications — have moved in to profit from our marginalization.

Just as Nestle moves into an area and commandeers all the potable water, then sells it back to the rightful inhabitants, so have the “Autism professionals” moved in on our lives, declared us “unfit”, and then devised all sorts of for-profit paths to “rehabilitate” us in the image they desire — as often as not using violence in its many forms to achieve the goal of “normalcy”.

If that’s not colonialism, I don’t know what is.

And in a very real sense, the people who are profiting from explaining our existence to the world — after they’ve completely confused everyone, to begin with — are stakeholders. In the financial sense. In the territorial sense.

So, yes, Cos — we should differentiate between the Autism Community and Autism stakeholders. That distinction is more than semantic. For some of us, it’s life and death.

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.

Working towards #Invisible #excellence

This 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.

Back to my Favorite Flow State

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.

Stoic on the Spectrum: Consider how quickly all things are dissolved and resolved

Today’s brief note comes from from Marcus Aurelius’ Meditations

IX. Consider how quickly all things are dissolved and resolved

… the bodies and substances themselves, into the matter and substance of the world: and their memories into the general age and time of the world. Consider the nature of all worldly sensible things; of those especially, which either ensnare by pleasure, or for their irksomeness are dreadful, or for their outward lustre and show are in great esteem and request, how vile and contemptible, how base and corruptible, how destitute of all true life and being they are.

So, things come and go. Pain comes and goes. Energy and vigor come and go.

One day, I’m fine. The next, I’m pretty much disabled. That, too, comes and goes. And there’s really no way to predict how things will be. I’ve tried. Oh, how I’ve tried. Doesn’t work. Best thing is to just stay loose and roll with it, so to speak.

“Consider the nature of all worldly sensible things…” All of them are ultimately resolved. They, too, shall pass. And if I wait for that to happen before I go on with my life, I’ll never get anything done. I won’t have a life worth living.

So, today, as my bones ache and I have less feeling and coordination in my arms than usual, I’m easing into my day… Doing my exercises that ease the pain and increase movement, so I can at least do the bare minimum… drinking plenty of water… getting some good food in me… doing less of a workout, this morning, but a workout nonetheless. And reading.

Reading things I love, that lift me up and brighten my day.

That’s certainly something.

If I’d only known about #Autism, Things could have been *very* different for me during #Menopause

I’m sitting here feeling sorry for myself again. I’ve been reflecting on my life a lot, lately, thinking about how my life has gone… thinking about how it could have gone differently… thinking about what could have been done, if I’d just known about being Autistic.

Or rather, if I’d just gotten professional confirmation of what I’d suspected since 1998. What I’d confirmed by reading and thinking and reflecting and reading some more, along with taking various tests and quizzes and putting myself through my paces, time and time again.

I think the time in my life that was the most critical, was when I was going through menopause, 15 years ago. It was incredibly rough, and it really took its toll. And if I had understood more about how Autism affected me, not to mention how menopause affected me, and how the two intersected, I really believe my life would have gone differently.

Sure, there would have been upheaval. Yes, there would have been uncertainty. But I could have factored in the elements of my Autistic self, and figured out how my changing chemistry was interacting with it. I needn’t have been so concerned that I was losing my mind. Because some basic calculations and some simple tools could have helped me keep myself on track.

But no. The awareness wasn’t there. I didn’t “get” that all the hormonal changes would plunge me into chaos far greater than anything I experienced in childhood — because I wasn’t “supposed” to have that level of chaos, being an adult and all. I didn’t fully appreciate that my situation could be tracked and managed, both from an Autistic side and a menopausal side, and I could have gotten to know my full self better, as a result. Nor did I have the realization that fully understanding both Autism and menopause could actually ensure (not guarantee, but give me a fighting chance) that I’d be able to navigate the ever-changing world with objectivity and self-assurance, instead of a constantly increasing sense of dread and panic.

Yeah, things could have been very different for me. I’m sure of it. But there was too much I didn’t know. And I didn’t realize how important it was for me to go looking around for answers.

‘Cause I was in constant sensory distress. Overwhelm. Confusion. And I didn’t have a lot of bandwidth left for research.

Well, I came through it. And I know now how to address my situation both from an Autistic and a basic everyday physiology point of view. I’m doing it today, as I’m dealing with some nagging pain and fatigue, while keeping to a somewhat regular work schedule. I’m looking up answers to my situation, at the same time that I’m taking it easy on myself and cutting myself a break in important ways.

I can’t get those years back, that I suffered more than I could have. But I can certainly do something for myself now.

All the #AutismLampreys…

Sea lamprey on brown trout

Twitter has been, uh, exciting, lately. What with yet another “long-suffering” mother of an Autistic boy whose publishing a book recounting her bouts of domestic violence towards her boy with cathartic (for her, anyway) flair… and experts coming out of the woodwork to declare Autistic people “genetic messes” who create havoc because we won’t give up our egocentric agenda, possibly because we’re the products of two different human species breeding  and creating a “genetic mess” (yes, you heard that right – someone actually said that in public at a professional conference).

Good . Lord .

Iain McClure’s little riff (now I’ve properly spelled his name, so that’s an  improvement) really stirred a lot of stuff up. And #Elmomom’s gyrations — along with her publisher’s less-than-courteous responses to critics — have done the same. Of course, still more people pop up out of the woodwork to add their two… four… six… eight cents’ worth… All of it adding to the controversy, not to mention the chorus of Autistic, “Uh…. NO“s that ripple out from the virtual rocks they toss in our pond.

Sigh.

Lord, how tired I get of all this. And it occurs to me that a lot of people who are jumping on the Autism “cure” or “treatment” bandwagon are not so very different from lampreys, those fish that attach themselves to larger fish and feed off them as they swim through the sea. I just spent a few minutes looking at pictures of lampreys, and I’m pretty grossed out. Then again, that’s about the feeling I get from all these people who cash in on “fixing” Autistic kids for concerned parents.

Bloodsuckers. Tagging along for the ride.

“Oh, but they want to help…” you might say.

Yes, you might say that.

To which I’d respond, “If they really wanted to help, they’d get educated first about Autism, learn what it is, learn what it isn’t, and quit confusing extreme environmental and sensory distress with Autism. They’d quit trying to “fix” the very thing that’s at the core of who we are and how we are, and learn how to help Autistic kids develop along their own trajectory.

And they’d quit horning in on our lives, our conversations, our dialogues, our Twitter threads… all the while making bank from presentations and book sales and consulting and such.

Yeah, yeah… it’s a free country. I’ve heard that one recently.

I just wish we could peacefully swim in our own waters, without some other species attaching itself to us for their own benefit.

Here #IFixedIt – Ian McClure’s truly bizarre riff about #Autism

It’s been a strange day. Apparently, an eminent psychologist went on about Autism in some pretty bizarre ways — all the more bizarre, because apparently he helps determine direction for agencies(?)

He repeatedly talks about “autism” like this — see the transcript here. And I couldn’t just sit back and not say anything. Seriously, conflating “autism” with environmental or sensory distress experienced by Autistic people is very mid-20th century. And it’s got to stop.

I’m on a “tear” about how we need to stop referring to environmental/sensory distress experienced by Autistic people as “Autism”. It’s not Autism. It’s the result of external circumstances hobbling us as Autistics.

Take a look at what he says below, and note just how nonsensical his ideas sound, when we consider them in the true light of the Autistic experience. Italic emphasis  is mine. For effect.

 

Ian McClure (IM): The question I am trying to ask here is does it help us when we are trying to work with autistic people in environmental or sensory distress to actually say maybe this person is emotionally stuck at the level of a two year old, just hold that (inaudible) in your head for a bit

…

IM: and ok so we are coming back in hopefully, we are coming back to this thing about egocentricity, now what I, I have been wondering about is, if we did think about autistic people in environmental or sensory distress as egocentric in the sense of a toddler and if we do remember this whole phenomenon of regression, emotional regression. That suggests that maybe there would be a process for a n autistic person in environmental or sensory distress, right at the beginning of their life, which was very stressful. Ok so I want you to just sort of entertain that idea in your head. We’ve got somebody that right at the beginning of their life, that something really stressful happened to them that means that they cannot move forwards from that emotional regression stage, from that egocentric phase, and so the question is what could that be? What I am wondering about is, is it possible, that autistic people who end up in environmental or sensory distress, in that first year of life, they are not much different to everybody else? Is that possible? And that what we have got is a situation where something happens in that first year of life which does then change the way that that infant is developing. Maybe environmental or sensory distress in a way is a social coordination disorder there’s something about the way that we coordinate ourselves socially, the cerebellum is doing that. We know that autistic people in environmental or sensory distress often have difficulties with these systems but we don’t really know why. Maybe it goes back again to something to do with maybe two different human species came together and what you’ve got is a genetic mess that isn’t quite right, that something is not quite right.

…

IM: So I am wondering about whether we should think about the idea of what I call a kind of internal exponential trauma caused by the sensory and the neurological challenges in the brain of the autistic person in environmental or sensory distress one of the reason I am so keen on this idea is, this idea which I think a lot of us have who work with autistic people in environmental or sensory distress, is that somewhere inside that person is a, dare I say it, normal person and this is the experience of parents, the desperation (inaudible) is I know there’s somebody in there if I could only just get at them and reach them. Now I know that that has been dissed a lot and people say oh you’ve got to move on from that, that’s just emotional, you know, it’s just the emotional (inaudible)

….

IM: Maybe we need to go right back to what people like Freud and Bleuler and Kraepelin and have a look again at what they were thinking because what happened in the 1950s was that whole thing got chucked out and DSM and so on and all these other things are just not interested in it. And the way it is going forward now is that the research that is being done by psychiatrists by academic psychiatirsts in places like London and America and stuff like that is very focused on looking for drugs. They are looking for drugs to answer these behavioural differences, and that is what they are doing they’ve got this magic bullet idea, if we can get a drug for that just think how much money we can make. And that’s a big motivator. And I know I am sounding very cynical but I’m afraid, you know, that’s going on.

…

IM: Ok so I am just going to summarise, In environmental or sensory distress my experiences as a clinician has been that the thing that is really challenging is this own agenda behaviour, that’s not in anyway minimising all the other stuff, but what it boils down to is time after time you know in the clinic this person is causing havoc because they won’t give up on their agenda. So then I started to think, could that be about egocentricity? And then I started to think, hmm, what about, what about something has gone wrong that has meant that that person has got stuck in the egocentric phase. Does that help us, think about it? what could that be? What could that be? If that was true, what could it be? We’ve got clues, we know that autistic people in environmental or sensory distress are in some way experiencing the world differently and that can be incredibly distressing for them. We don’t know a lot about it but we’ve got some clues and could that be enough as an internal stressor and are we having possibly a traumatic encounter there which is exponential because of the massive development that is taking place in the first year of life.

…

Anon (Name to be added if they give permission): My name is (deleted), I am a clinical psychologist and Ive spent most of my working life asking autistic people in environmental or sensory distress what they think and feel, I’m also neurodevelopmentally challenged myself and I really found thinking of myself as a different species and a genetic mess, I’m also a mother of a son who is a genetic mess, if we don’t have autistic people in environmental or sensory distress and people with dyspraxia and dyslexia and adhd in our society then it would be much less rich. The reason that those things were thrown out many many years ago is that they were wring. And to start to move back to things like refrigerator mother and prevention of environmental or sensory distress, I think is not appropriate.

(Lots of applause)

IM: Shall I respond?

…

IM: I never said anything about refrigerator mothers and I acknowledge that that was a dangerous area that went, you know, clearly wrong but I think it is great that I have had this response actually, because I think it is important to get a reaction like that and I’m pleased that you have reacted like that. All I am doing here is asking questions, I don’t know the answers to these questions. What I am trying to do is I am trying to make sure that we don’t get stuck in a silo mentality, I want us to keep our eyes open about environmental or sensory distress and I do not mean to cause any offence by saying the things I have said but it’s a free country, last time I checked it’s a free country and we are allowed to say what we think and I am basing this on my experience with my patients over twenty years so you know that is just my experience. I am worried that these people are being traumatised by something that is going on in side their minds, that’s all I’m trying to say to you, so thanks a lot (applause)

So, yeah… If you look at Autism just as something that occurs in the brain, you get these kinds of ideas.

But if you understand Autism as something that shapes your every experience in a physical, mental, emotional, and spiritual way (with an emphasis on the physical which can lead to a ton of distress), that changes it, doesn’t it?

It changes everything.

Which is where I’m hoping the Autism research community goes. Away from the “egocentricity” idea. Away from the “own agenda” concept. Away from the belief that meltdowns are “tantrums” which we choose to leverage to get our own way. “Creating havoc” and all that.

The good part is that people are speaking up about this.

The bad part, is that we have to.