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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Working towards #Invisible #excellence

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

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

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

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

Sigh.

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

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

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

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

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

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

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

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

Back to my Favorite Flow State

green and purple aurora borealis over water and lights of town

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

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

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

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

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

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

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

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

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

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

Nope.

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

Oh yes! Getting back into the flow.

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

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

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

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

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

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

Just like me.

It’s all gotta just flow.

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

arrows in all directionsToday’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

roller coasterI’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
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

bored emoticon mehIt’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.

 

Sickness and lameness and hindrance, oh my…

grid of four people rolling stones up hills
Just keep going. Just keep working.

My stoic meditation of the day comes from The Enchiridion By Epictetus

9. Sickness is a hindrance to the body, but not to your ability to choose, unless that is your choice. Lameness is a hindrance to the leg, but not to your ability to choose. Say this to yourself with regard to everything that happens, then you will see such obstacles as hindrances to something else, but not to yourself.

10. With every accident, ask yourself what abilities you have for making a proper use of it. If you see an attractive person, you will find that self-restraint is the ability you have against your desire. If you are in pain, you will find fortitude. If you hear unpleasant language, you will find patience. And thus habituated, the appearances of things will not hurry you away along with them.

Indeed. I tend to lose sight of the fact that all my sensitivities don’t prevent me from choosing what to do with my life, and finding ways to deal with them. The simple fact of my life, which is my guiding principle, is that if I can identify that something is a problem for me, and I know what alternative I want in its place, then it’s incumbent upon me to do something about it.

I’m pretty resourceful, when it comes down to it, so I can’t very well make excuses for my life going the way it has, when I’m actually capable of A) seeing when I’m going off the rails, and B) coming up with alternatives.

Now, certainly, it’s no fun to have to constantly navigate a world that’s designed for people completely unlike me. But one of the reasons I left my parents’ house and took off on my own, was precisely because I knew that out there in the world, I could fashion my own environment that suited me. I know what bothers me, I know what makes my life difficult. And with that knowledge, I can design a life that works for me.

Of course, not everything is going to be suited to my liking all the time. But so what? The times when things are extremely challenging, are the times when I build up strength. Provided I give myself time and space to recover and assimilate all the lessons, the challenges just make me stronger. More resourceful. More determined. Maybe it’s just my character. Or maybe it’s because of how I was raised. Whatever the reason, when I look back at the worst times I went through, those were the most valuable lessons.

In some cases, you get what you pay for. And I’ve paid dearly, I can tell you that.

It’s all been worth it. Some of my experiences have felt like they tore me to shreds, but you know what? I’m still here.

So there.

And I’m going to stick around. There is no way I’m going to succumb to the dire predictions that I’ll die 20 years earlier than my non-autistic peers. That’s just ridiculous. We get to choose what we do with ourselves, what choices we make, what direction we take. And if I choose to do things that I know are not good for me — like avoiding certain foods because of the textures, but not supplementing my diet in other ways, or like avoiding exercise because I don’t have the energy — I have only myself to thank for vitamin deficiencies or poor physical condition.

Some magical being in the ethers isn’t going to descend to earth and save me from myself. If there are things I have to do, because the laws of physics and human anatomy require them, then one way or another, I’ll do them. It’s my choice. And I have the capacity for reason, discernment, to find alternatives, if one way doesn’t work for me.

So, with that said, it’s time to get on with my day. I find out what the deal is with my job — new paths are being charted for us at work, and the direction we’re taking actually makes a whole lot of sense for me.

Maybe I don’t have to leave my job, after all… Even so, I have a video interview for another position on Monday. It’s all a dynamic process.

Of course it is.

It’s life.

Something must be up in the world… but I wouldn’t know.

man in a boat on a lake with mountains in the backgroundWow – people are on a tear tonight.

All kinds of feisty, racing around, slamming into each other… the cops are out en force, and I’ve seen plenty of people pulled over, sometimes with lots of extra emergency vehicles around them.

Traffic on the way home was crazy tonight, with people flying all up in each others’ tail-lights, beeping, roaring… you name it. And this is even more than usual.

Something must be up in the world.

But you know what? It’s been 2 days since I looked at the news, and I have no idea what bees might be in their bonnets. Nor do I care. I mean, I care, but not so much that I’m willing to sacrifice my own well-being for others.

And I realize, that’s what I’ve been doing, lo, these many years that I’ve been paying attention to what other people do in the public arena. What a poor use of time. It’s useful to keep in touch with who votes in my favor, and it’s a good idea to participate in positive change. But all this other… crap that’s all over the news… yeah, it just doesn’t make sense to follow any of it.

Especially when nothing really seems to change much, even after all the upheaval and drama. There are so many other more constructive uses for my time and energy, than “following” the antics of people who are all into the drama for drama’s sake.

Me? I want to actually accomplish something.

So, I do. I’ve been reading a lot, lately. Spending far less time online. Chillin’. And it’s good.

Have a lovely evening — or day, if you’re reading this in the morning.

So, What’s #Menopause and What’s #Autism?

spectrum spiralThat was the operative question for me about 10 years ago. Or rather, it should have been the operative question, but I was so overwhelmed with my life and my body’s changes, that I couldn’t think clearly about being Autistic.

I actually couldn’t think clearly about being Autistic for years prior to that, because, well, being Autistic and not having a definitive diagnosis (self-DXed or otherwise), and not having any sort of support or community to turn to, there was little to no opportunity/chance for me to cogently suss it all out in my head.

Things were just a big ol’ mess, and that was that.

My job situation was tenuous, and I was moving from position to position, from company to company, without anyone really realizing what was going on. In hindsight, I can tell you:

I was moving from job to job, because I couldn’t track what was going on around me. I was overwhelmed from the changes in my monthly cycle, which were also accompanied by dramatic changes in my hormonal levels and behavior and thinking process(es), and I was in constant dread of being found out — that someone would figure out that I was a screw-up who didn’t know what was going on, and they’d just get rid of me. I had to keep some semblance of “control” in my professional life, so that meant moving around a fair amount.

I mean, it was rough. And the thing that made it the roughest, was not having adequate cluefulness about Autism and how it affected me. I am 100% convinced that I could have managed my situation, if I’d had adequate knowledge about Autism, as well as menopause.  I am proactive. I’m a planner. I come up with structures and systems that assist me. I build tools, I leverage assistive technologies (even ones that aren’t build with that intention), and I am highly scientific about how I live my life.

So, if I’d had reliable info about A) Autism and B) Menopause, I am 100% certain I could have handled it all extremely well.

And I’m just as convinced that other women can, too.

Of course, all this is … fraught.

One of the hazards of talking frankly about (peri)menopausal Autistic women, is that to the untrained eye, it can make us look extremely debilitated. That’s no good for our careers, for our social lives, for our prospects in the mainstream — where, like it or not, a lot of us need to function. Plus, when people hear about our difficulties and how much menopause really f*cks with us, they can automatically jump to the “oh you poor dear” victim mentality, where we’re supposed to be coddled and care for and given special consideration.

Screw that. Given half a chance, I can really do an exemplary job of living well — and I do. On a regular basis. A lot of us do. So, treating me/us like poor hothouse flowers who need to be sheltered and given special dispensation just works against us.

I’m not saying we don’t need consideration. We do. But don’t turn us into helpless victims, simply because we’re going through what millions upon millions of other women (Autistic and otherwise) have successfully gone through for millennia before us.

We need to talk frankly about it. We need to discuss. I might just be that we can’t do it freely in public. Some well-meaning person may pick up on what we’re talking about and — god forbid — institute some policy around it.

Well, enough of that rant. It’s Monday, and I’m ramping up… I don’t want to get distracted. Okay, where was I?

Ah, yes — figuring out whether the drama in your life is Autism or Menopause…

As I discussed earlier (#Autism and #Menopause… Like we don’t have enough problems already!) , we’ve got a bunch of overlaps between the two situations — one of them permanent, one of them temporary:

hypersensitivity (including achy joints and sensitivity to noise, temperature and pain), muscle aches, foggy thinking, forgetfulness and other executive function challenges, trouble sleeping, difficulty with temperature regulation, seizures, migraines, irritability, depression, anxiety

Additionally, we can have additional health issues, like EDS and fibromyalgia and epilepsy, mental health issues, and injuries that can make our lives that much more… interesting and eventful. And then there’s life. Menopause comes along at a time in our lives when we’ve got increased responsibilities: our professional lives can be packed full of responsibility, our personal lives can be in upheaval, we can have a bunch of dependents to provide for (growing kids and aging parents at the same time), and much of what we handle, we have to handle alone, because other people say we’re so good at it, so that qualifies us to be the subject matter experts and take full control/responsibility for those things.

It seems pretty much like a setup to me.

And when you add Autism to the mix, oh yeah — that’s even better. Because we’re already hypersensitive as Autistic women (or men who are have menopausal women in their lives). We’re already achey and sleep-deprived and anxious and everything else listed above (and more). But then life comes along and tosses the menopausal firecracker into our well-ordered lives, and kaflooey! Instant drama.

I’m not one to dwell on constant problems. If I were, I would have ended my life long ago (it’s true). I’m all for solutions — and the one solution I found is really the most basic one of all: education and proactive management of my situation. Using tools. Writing things down. Keeping close tabs on the ways that my life is screwy (and yes, it is in many ways) and doing something to unscrew it. Focusing on the places where things fall apart for me, and coming up with ways to keep them together, in spite of forces beyond my control.

I’ve gotten lectures from other people about how I shouldn’t use a “disability model” when I think about being Autistic. I should focus on differences and reframe my limitations as just variations in the human theme. Philosophically, I totally agree. But logistically, that just doesn’t work for me. I really do have problems associated with Autism, and to tell the truth, the very thing that saves my a** in all of it, is “getting ahead of it” and coming up with ways to address or augment my issues — because I durned well know I’m gonna have those issues… or I already have them, and they’re making my life extremely difficult.

I’ve got to get read for work, now, but I’m going to share some of my most helpful tips, tricks, and techniques on this blog. Seriously, people, menopause happens to so all of us — both directly and indirectly. And it’s especially impactful for Autistic folks. Forewarned is forearmed, so we need to gird ourselves and get properly equipped to deal with it.

That means… information. Facts. Scientific research. Just knowing what’s going on with us, and what we can expect. Without that knowledge, we’re sunk.

And we also need tools.

So, I’ll leave you for now and come back around later when I’ve got more to share. I’m ambivalent about this Monday. No, scratch that, I really don’t want to “do” this Monday. At all. I have a long list of pain in the ass people I have to deal with… But I’m delaying the inevitable. Off I go… wading into the fray.

More to come later. Much more.