Just a few more days, till I can get back to my routine

pocket watch on map with sandOh, Lord, the inside of my head sounds ungrateful, right about now. A still, small voice has gradually been getting louder and louder… bitching and complaining about the lack of routine in my days, this past week and a half. And that voice is eager to get back to the familiar routine of the everyday.

I can’t remember the last time I had nearly two weeks off for the end-of-year holidays. I don’t think I ever have. So, in some respects, it’s been blissful. No structure to strangulate my creativity, no outside demands (other than Christmas shopping and the odd errand) to cramp my style. I’ve been able to get up when I wanted, go to sleep when I wanted, pretty much nap whenever I please, and so forth.

Yeah, in many respects, it’s been delightful.

To just let time drift, without having any deadlines, without having any requirements, without coming down to the wire on something… it’s been glorious. My everyday life is structured pretty much around deadlines, due-dates, timelines, and so fort. It all feels so contrived to me. I have a different relationship with time than a lot of people, but that actually makes me more productive. I get more done in a few hours than a lot of people do in a week. But still, I absolutely hate deadlines and standard-issue definitions of time.

Not having that holding me back has been wonderful.

But in other ways, it’s been pretty hard.

The combination of lack of routine, plus unusual activities produced a couple of meltdowns — one in a bookstore bathroom, the other at home. And a handful of commitments I said I’d do, haven’t “materialized”. I’m using that word to get myself off the proverbial hook, because the failing hasn’t been due to some amorphous outside influence — it’s been all me.

And my need to just withdraw and shut down for a week.

Oh, the holidays are funny things. Not ha-ha funny, but weird and absurd in ways that make me laugh, for some reason. I’d been so looking forward to having nearly 2 weeks to get some things done that I’d been putting off… but once I got into holiday mode, it was like I skipped over to a parallel universe, where precious few of my interests or activities intersected with my original plans.

pug looking sidewaysParallels by definition don’t intersect, so there I was, on my separate track, looking askance at my best-laid plans… feeling faintly guilty… but not too much.

More than anything, I just wanted to be what and where I was — a normally highly efficient individual… free at last.

Which is all very interesting to me, because few things give me more satisfaction than getting things done, creating, building, producing.

And yet, there’s that intense need to NOT do any of those things, every now and then.

It’s like there’s this dynamic back-and-forth between the DOING and not-doing, that balances out my life. And considering how much I’ve been doing for months, now, I really needed that time of not-doing, to reset.

Which makes me really look forward to getting back to my regular routine.

Yeah, as much as I enjoy floating in some amorphous cloud of whatever-ness (and I do!), there’s still a big part of me that just loves-loves-loves my productivity. My predictability. My ability to Get Things Done. I love surrounding myself with the results of my work, and I love the process of getting to those results. I love having my set sequence of steps I follow to a “t”, with so much expertise, I don’t even really need to think about the steps. I just do them. Because I do them every single day, and they’re very much a part of me. Some days, it feels like they are me.

So, in a way, getting back to my routine will be getting back to myself.

And that will be good — every bit as good as taking time away.

It’s all a balance, in the end, a continuously alternating back-and-forth between two extremes. I’m autistic. I know all about extremes. And I also know how to make the most of them.

And for today, and the next day, and the next day, I shall.


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The Upsides of #Alexithymia

tree by lake with moon and stars overhead

Something occurred to me, the other day. Namely, that alexithymia has been a huge advantage for me.

Not because it’s confused me about my feelings, but because it’s forced me — literally forced me — to rely on logic to navigate through life.

Okay, so that might not sound like such a great thing, considering how illogical the rest of the world is about stuff. Not being “in touch with my feelings” — heck, not even realizing I’m having certain feelings — sets me apart and puts me in the minority. It makes it harder to figure out whether people are really my friends or not. It makes it harder to figure out if I want people to be my friends. And it makes it difficult to tell what other people think of me, as well as figure out what I actually think of myself.

But that difficulty has been so pronounced, it’s required me to use my powers of observation and deduction to make sense of situations. To notice small details that others don’t see, to parse bits of info that most people overlook. To really invest a lot of myself in figuring out how things (and people) work, so I can be effective in interacting with them. I’m definitely one of the best “people persons” I know — people complement me all the time on my empathy and ability to interact with others. That, my friends, is because people have been one of my all-consuming interests, and I study them and their behaviors more closely than the most devoted American fantasy football player studies the weekly stats.

I’m good. I’m really that good. But it didn’t happen overnight. And it sure as heck didn’t happen by accident. I’ve worked at it. Nobody can take that from me. I’m the hardest-working person a lot of my friends. Well, yeah. Because I have to. Not much choice there.

I know it’s not a realistic option (because no choices are ever truly this binary), but if given the choice between built-in emotional “intelligence” about myself, or pure logic, I’d go with logic every time.

Given the right information about how my system works (including emotional things), with logic I can figure plenty of stuff out on my own. And logic serves me just as well as emotion. If I know — from observation — that such-and-such a sensation in my body means I’m nervous, I can take steps to offset the nervousness or channel the energy in a more productive direction. If I can deduce that such-and-such a feeling in my gut indicates a certain mental/emotional state, I can adapt and adjust and work with what’s there. If I know logically that being tired and hungry makes me feel terrible, emotionally, I can track my meals and sleeping pattern and recognize when my outbursts are related to exhaustion and/or low blood sugar.

Emotional self-knowledge only takes you so far, from what I can see. A whole lot of people around me who have no issues with alexithymia are (to put it coarsely) emotional wrecks. Their emotional states run their lives, and even though they’re “in touch with their feelings”, that doesn’t keep their feelings from taking over their lives. They’re even less happy than I am.

Of course, I’ve had to fail a lot of times before I figured out a lot of this. The rest of the world doesn’t instruct explicitly, but expects everybody to just know stuff. But all that failure has trained me to not take failing so damn’ personally, and to just get on with living my life, learning about it, and adjusting to the ongoing flow of information.

Information, it’s all information. And logic helps me parse through it deliberately, intentionally, self-sufficiently. Just how I like it 🙂

And I seriously doubt that I’d take the trouble to develop my logic, if I had insights into emotions and whatnot.

So, even with the difficulties, alexithymia has really come in handy. And to be honest, I wouldn’t trade it for the world. Some days, I’d like it to be a little less extreme. But I always have logic to fall back on.

And with that dangling participle, I’m off to live the rest of my life.


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Raised to be #autistic

driftwood on the beach
My family would appreciate this piece of driftwood as much as I do

I’ve been thinking a lot, lately, about how fortunate I am. I’ve been kind of tangled up in all sorts of emotions about letting go of old unrealistic expectations that were very much a part of who I thought I was — or could be. I’ve always had goals, always had aspirations, but the more I think about it, the more I realize just how non-autistic so many of those goals were.

I think it’s just normal to internalize the values of society — we’re constantly being shown images of the “ideal”, constantly getting unspoken messages about how we should/should not be, constantly being redirected in subtle ways to keep us on society’s “straight and narrow”.

I also think the influences are particularly pronounced, when you’re autistic. We pick up so many cues and clues that slip by others, and we can be so strongly impacted by even the slightest nudge in a certain direction… even the faintest hint that we’re not OK… Which sets us up for ongoing bombardment, because society’s clues and cues are really designed to pressure folks who aren’t sensitive, who don’t pick up on subtle messages, and who can’t discern the gray-area differences between good/bad, right/wrong.

So, autistic folks end up bludgeoned. We really do.

Which is why I’m really, really happy that I was raised in an autistic family.

Nobody called themselves autistic, of course. It wasn’t a thing when I was growing up. Autism was a classic-Kanner deal, where you had to be severely impacted/disabled by your challenges, in order to be considered autistic. We knew of families who had autistic members — the guy who renovated our kitchen, for example. But those cases were just whispered about. Those of us who suffered intensely from environmental and sensory distress, but were able to go about our lives without being permanently disabled by all that, were considered “normal as normal can be”.

Indeed, for that time and place — in an insular religious community that was highly regimented, rules-oriented, literal, hard-working, and chock-full of physical activity that gave you ample outlets for your overabundance of energy — we were normal. Because how we were and what we were, was the norm. And our community of faith was sufficiently insulated from “the World” (capital W), that the ways of the evil outsiders never posed a danger to us.

Our autism was our creed. It was the right way to be. It was the only way to be. And anybody who wasn’t like that, was considered a minor (or major) threat. The ways of the non-autistic World were evil. Temptation. An ever-present danger that put our souls at risk. In the world where I was raised, you followed the rules. Autistic rules. Religious rules. Social rules. You didn’t deviate, on pain of expulsion. It wasn’t pathologized. If anything, NOT following the rules was pathologized.

Of course, all that pathologizing got a bit old, after a while. Especially for me. I wanted something bigger and broader than what the rules allowed. A more generous interpretation of gender. A less debilitating interpretation of what was possible for girls and women. The rules may have spared me a lot of anguish and insecurity, when I was growing up, but they also hemmed me in… in ways that were excruciating. Nearly lethal.

But let’s talk about the fun stuff, shall we? I can sit around and feel bad about the bad, or I can choose to feel good about the good. Life supplies ample amounts of both, and where I choose to concentrate is up to me.

There was a lot of good, in being raised that way. As painful as it was, as excruciating as it could be, it trained me along certain lines. And having a hyposensitive mother who was always on the lookout for the next exciting experience turned out to be a boon. Seriously, my Mom was/is like a shark… always moving, always seeking her next sensory experience, looking to fill up on the inputs of life. We did a lot, when I was growing up. Camping. Hiking. Playing. Working. Always active, always thinking, always talking. Even though it overwhelmed me constantly, and it took me years of pain and frustrationi to learn how to deal with it, now that I know how to do it, it’s an incredible gift.

My father, with his unending pontification, philosophizing, pedantry… always thinking, always talking, always convinced that his ideas were the stuff of wonder and awe, always convinced that he was on the cutting edge… His bravado (annoying as it could be at times) is something I carry with me. I’m more tempered, I think, in my suppositions of grandeur, and I do believe I have a wider base to draw from than he, who’s always operated within a fairly narrow mindset and belief structure. But that same conviction that my thoughts matter, that my insights have depth and importance, is clearly inherited from him.

My whole family was so autistic… Pick up a (credible) work on autism (preferably written by an autistic writer/researcher — Milton Damien comes to mine, along with others whose names I can’t conjure right now — or someone who’s a true ally — Luke Beardon’s latest work is a good bet)… and make a laundry list of autistic traits, and I can assign them, to most (if not all) of my biological immediate and extended family to one degree or another. I can also find those traits in my onetime neighbors and classmates, the folks who attended our church, the people I interacted with daily as a kid.

They all helped raise me. They “trained me up in the way I should go”, and that way was autistic. They raised me to be neurodivergent, and it was our most critical identity. It was our saving grace. All those rules, all those pressures, all that constantly reinforced messaging of right/wrong, on/off, acceptable/verboten… all of it spared us from the world. Our agreed-upon rules, our regulations, our religion… it buffered us and gave us a profound, unassailable sense of belonging with one another that was so powerful and enduring, it makes today’s identity politics look like capricious dabbling.

We were autistic. All of us, to one degree or another. And the ones who weren’t, were recognized as “different” and accommodated, so long as they made an attempt to comply with our ways. In a sense, I was raised in a world that was the flip-side of the neurotypical mainstream — all the autistic folks were normal, non-autistic folks were the neurodivergent ones, who were looked upon askance, not quite trusted, sometimes pitied, often excluded, and constantly pressured to become like us.

To be autistic.

Well, it’s a beautiful day, and there’s an adventure out there “with my name on it”. How’s that for an image — in my mind’s eye, I see a vast stretch of wilderness with a stickie tag on it that has my name written in dark blue marker.

Time to make that come true, and do my parents proud.

Accommodating my #autistic self

aurora borealis over ocean with the lights of a town in the distance
Aurora borealis over the ocean with the lights of a town in the distance – We didn’t see this last night, but we tried…

I’m not going into the office today. Oh, no. Not today. It’s Monday. I’ll work, sure, but not in that damn’ office, in that damn’ cubicle, surrounded by those damn’ people. It’s much easier for me to do the sort of work I need to do, if I have peace and quiet and isolation. I’ve got some research to do. I can’t do that, with a steady stream of strangers stomping past my cubicle.

People ask me, sometimes, if I would ever disclose being autistic at work, so I can get accommodations. The answer is always “no”. I don’t expect my employer to offer me any accommodations, to be honest. The environment I work in is highly demanding, and they expect people to cover for themselves, not expect someone else to handle things for them. It’s a “tough luck” environment, where everybody — and I mean everybody — is expected to take care of themselves and not put additional strains on the existing infrastructure and overall team cohesiveness by expecting special treatment.

There’s a guy who’s missing an ear who simply puts a large bandage over one side of his head and goes about his regular business. The woman who worked in the cubicle before me died of lung cancer and refused to take time off while she was declining — until she was literally unable to work anymore. There are folks with significant physical disabilities walking the halls, and that’s just part of it. People show them consideration, but they don’t get a whole lot of special treatment. And autistic folks abound. We’re everywhere, at that place, but nobody actually ever mentions autism.

There aren’t a lot of official accommodations offered. I can’t get the fluorescent lights turned off over my cube, because that will short out the whole floor (according to Facilities). I don’t have a lot of control over the temperatures in the place. The scented diffuser in the restroom is non-negotiable. So, like everyone else, I have to fend for myself. Just like everyone else.

If you don’t like the noise in the space, you’re expected to put on noise-canceling headphones and concentrate harder. If you don’t like the temperature in the place, put on a sweater. Or wear something lighter. If you get overwhelmed by things, you’re expected to step away for a little while to unwind (a lot of people do that). If you have issues with sensory stuff, you’re expected to just roll with it, do what you need to do for yourself, and keep up. Just keep up. And when it all gets to be too much, you work from home. Like I’m doing today.

It might sound like a harsh environment (and in some ways it is), but the bottom line is, we’re all given the opportunity to manage our own situations…. Not throw the whole workplace into disarray because of a few unique requirements.  We’re expected to be grown-up about things and arrange for what we need. Everybody’s got unique requirements, so rather than having the Overlords provide for your safety and comfort by official edict and codified guidelines, you’re afforded the right to determine your own conditions under the circumstances that everyone shares.

And I actually like that better than the formal accommodations thing. Because my needs change from day to day, and the help I need one day, might be “overkill” the next. This way, I just manage my own situation, and the work gets done.

So, today, that’s exactly what I’m doing. Managing my own situation.

I’ll make sure to get a nap this afternoon. I woke up tired, and I’ll be even more tired by this evening. I was out late last night, trying to see the aurora borealis in the northern sky. The plan didn’t work out. No northern lights were to be seen — just some brightness behind clouds in the distance. But it was fun to get out in the evening with my sweetie and just hang out.

The whole weekend was tiring, now that I think about it. I did a lot of non-standard hanging out. I wrote some pretty solid work both Saturday and Sunday mornings. On Saturday, I spent the afternoon visiting with a friend. Then on Sunday my partner and I went to see another friend compete in a dressage competition. Her horse is beautiful, and it was fun to get out to a different part of the world for a day. I was expecting a lot of moneyed people to be there, since dressage tends to be “high-end”. But there were just little groups of everyday people like me. And my partner got a chance to actually chat with other people, instead of being stuck with task-oriented me.

I know for a fact, I can be trying in those situations. I have a really hard time relaxing in public, especially when it’s a hot, bright, sunny day and I’m in a new and unfamiliar location. It’s just hard. So, it’s good for my partner to get to stop and chat with others, widen her world beyond my fretting about getting everything done in a specific order. Changes in routine can’t stop me from just living my life. Nor should they stop my partner from living her life, as well.

Yeah, it’s hard… so…? Everything worthwhile is hard for me. That just makes it worth more to me, when I manage to get it right.

But then, the exhaustion.

But then, the self-management. The self-accommodation.

I took naps, when I got home from both of my social outings. I just lay down in the bed and relaxed and slept. Then I did the usual — got up, made supper, ate supper.

Last night, I changed up my usual Sunday routine again, and we went out to see if the northern lights were going to show up as predicted.

They didn’t show up in the 90 minutes we were out there, and in the end, I got too tired and we had to come home. My partner was really disappointed. She’d wanted so much to see them with me. To share that experience. But the space weather didn’t comply. For me, it was good enough, just hanging out.

Now it’s Monday. I’m tired, but I’m happy.

And I’m going to take really good care of myself, today.

#Autistic Day After – Roaming around the house with my headphones on

field with blue sky and clouds overhead

I had a very productive day, yesterday. I did so much that I’d been wanting to do. I wrote some things I’m very happy with. I drove around and did my errands. Shopped. In more than one place. Even went into a big-box office supplies store and… browsed! Imagine that. Usually, the overhead lights and myriad choices keep me from getting anything other than what I specifically came to buy (and wrote down on my shopping list). But yesterday, I improvised. And I found some pretty cool stuff that I’ve been needing. Okay, so I also picked up a movable computer workstation, which I don’t have room for (yet) in my house. But it was a bargain! 75% off the normal list price! So, that was — intellectually speaking — a triumph.

I refuse to let the fact that I don’t actually need it, to deter me from my sense of victory. 😉

I got so much done — and these were important things I’d been delaying for far too long. Yep, I finally got the audio workstation up and running, and in far less time than I expected. I broke up the task into two separate sessions, and I kept at it, till I reached a satisfactory conclusion. I scrubbed the shower walls. I organized my study. I removed the stacks of books and papers from the folding table set up in the dining room, which had effectively turned it into an alternate workspace for me. My dining room is now — almost — a dining room. I added a lamp to my upstairs study, so I can now see what I’m doing. I threw away stuff — including leftover doo-dads from a job I left over 2 years ago. The bag had been sitting in my study (of course) the whole time, as though I wanted to hang onto the memories of that old job.

Note to self, those memories are flawed. It wasn’t that great of a position, and in the end, it probably set me back. It’s just your alexithymia messing with you again.

I got my power cord from work, so I can work from home tomorrow, and I figured out where and when I probably lost my old power cord. I bought myself a battery-operated, cordless weed trimmer, so I can edge back the encroaching growth that’s responding to all the rain we’ve had with an explosion of enthusiastic green. I love having it this lush, after years of too little rain. But I’m starting to feel hemmed in. Today, I’ll give the tool a try — after reading the instruction manual, of course. Don’t want to maim myself in the process, which I have a tendency to do.

I dropped something on my toe, and it’s bruised and painful. But it’s not swollen and I can move the toe, so I won’t be going to the emergency dept for it. I’ve had broken toes before, and I know what to do for it, if it is broken. I don’t think it is. My feet bruise easily, and it feels more like a bone bruise. I’ve had this lots of times. I’ll just follow the standard protocol. And avoid the hospital. By all means.

I handled yesterday like a total boss. Even when my plans got messed up, I adjusted. I pivoted. I adapted. And I had a nap in the afternoon, which was good. I had a nice balance, and at the end of it all, telling my partner about everything I did overwhelmed her. Just thinking about everything I did made her head spin — metaphorically, that is! 😉

Today, of course, I’m paying the price for my hyper-productive day. My right knee is sore, for some reason. My head feels like I’m underwater. I’m in a bit of a daze. And I’m going to do far less today, than I did yesterday. Fortunately, I can. Because I got so much done. Today, I can relax. A bit. Just let myself be.

The biggest news, I’m happy to report, is that I’ve given up.

As in, I’ve given up having a lot of attachment to outcomes, when it comes to other people. Things I undertake. Plans I have. Projects I’m pursuing. I’ve been far too attached to the idea of specific outcomes, specific reactions, specific progressions of what-happens-next. I’ve gotten all caught up in the hopes and fears and dreams of what-may-be… and it’s blocked me from really focusing on what’s in front of me. Having a specific outcome in mind has ironically kept me from actually achieving those things. I’ve gotten so twisted up in thinking things need to go A Certain Specific Way, that when they don’t go that way, I’ve suffered.

Lord, how I’ve suffered.

When someone doesn’t react / respond the way I was hoping (which has been happening a whole lot at work, lately), I spend way too much time ruminating over what I did wrong, what I can do differently, why they did what they did… and it’s never a productive use of time. My partner has been unpredicatable, lately, too. Some of her good friends are seriously ill. And the partner of one of her colleagues just died from complications due to a condition that my partner has – albeit in a much less severe form. Cue the anxiety. For good reason. And all the work I do to help assuage the fears and reassure her… well, it’s not doing that much good, these days.

When my plans fall through, when stuff happens that screws everything up that I’ve been working on (which is also happening at work a lot, lately), I take it personally and get all mortified about things not going the way I promised they would. I have to report on my progress to people, and it seems like in the past months, I end up having to back-track and revise my story, every week or so. It’s really distressing for me.

These are the things I’m giving up. Getting all invested in things turning out a certain way. Putting on pressure to get things to happen a certain way. Pushing and advocating and all that other crap, that I’m supposed to want to do, for the sake of personal productivity and effectiveness. Oh, sure, I’ll continue to do it all — I’ll put on a good show. But put my heart into it? Nope. I’m done with that.

Just like I’m done with getting all bent over crap I’m supposed to care deeply about. I don’t care deeply about so much of this neurotypical, mainstream B.S. that’s supposed to be so important to me. Who cares? Who the hell cares? I certainly don’t. And I’m not sure why anybody else cares, either, except maybe to fall in line with the rest of the crowd and feel like they belong.

So, what’s all this got to do with roaming around the house with my headphones on?

A lot.

I put a lot of myself into yesterday. I sank a lot of effort, a lot of attention, a lot of my coping skills into everything I did. That was mostly for everyone else’s sake, to be honest. For the sake of my obligations to work, to my partner, to the neighborhood, the town, etc. Today, I get to spend the day on myself. I do have some stuff I need to do later. But that’s later. Right now, I’ve got my headphones on, I’m wandering around, alternately staring out the back door at the bird feeder, and curled up on the living room couch reading Austin Shinn’s book A Flickering Life: A Memoir of Autism (which I’m really enjoying and marking up sections to comment on later). I’ll go out for a walk later, just take my time strolling up the road and back. Then I’ll have a nap. I think. That’ll give me time to recharge my internal batteries, so I can finish up the must-do stuff this afternoon.

But right now, it’s time to eat some cereal, wander around the house listening to music I love, and chill.

 


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Otherwise (autistically) engaged

broken window looking out at sky
Beyond the break, there is wide open freedom.

It’s Thursday. I’m tired. No, more than that. I’m exhausted. Dragging. Dulled down in a very uncomfortable way for me. I hate this. But there’s no escaping it, so I might as well make the best of it.

It’s going to take a while for me to recover from my business trip last week, And I’m not happy about it. Being this tired makes it hard for me to stick with my routine, but of course I need to do that. So I modify it somewhat. I shorten my work out. I spend less time on things like preparing and eating my breakfast. I set lower expectations for myself at work.

Work has been extremely demanding for me, lately, and I’m not happy about that. I keep falling behind in things, and that makes me incredibly uncomfortable. But then I realize that everyone is falling behind in their work, so that’s some small comfort. Even if I have a really hard time with it, I’m surrounded by people who still support me, who struggle with the same sorts of issues, and who aren’t about to chase me out the door because of it.

All in all, I really do like my job a lot. It’s just exhausting. I’m wiped out by Wednesday afternoon, and then I’m pretty much of a zombie for the last two days of the week. That’s where I am today. Fortunately, I can work from home tomorrow, and I can take a nap in the afternoon, which will be a help.

I don’t mind the challenge of my job. I welcome it. I could just do without the exhaustion. I think I’d enjoy it so much more if I could just stay rested.

The one thing that would change everything for the better, is being able to take a nap mid-day. If I could only lie down for an hour, each afternoon, I would be so much more productive. And I need to do that every single day, so I don’t fall behind.

I have talked to people about my trouble sleeping, and they have all encouraged me – even urged me in the strongest of terms – to not disrupt my sleep-wake cycles with naps, because supposedly that will throw off my circadian rhythm. But these people clearly have no idea how exhausted I am by the end of the day, and they don’t know what it’s like to have that cumulative effect of one exhausting day after another.

I’ve been thinking a fair amount, lately, about how I engage with the world. There of been a lot of conversations on Twitter, lately, about eye contact – and I shared a paper, recently, that pretty much says what we already know, albeit in scientific terms and with data to back it up. Also, people are talking about memory, and why we as autistic people remember things differently. My head is spinning with all these great ideas, and stuff is “gelling” in my head… just in chunky form. I’m sure there’s a common theme there… somewhere…

My understanding of memory is that it is a complex thing which is made up of a number of different components. In order to have a memory, first you have to create it. Certain parts of your brain have to be engaged to really make it salient – to make it stick. And then, you need to be able to retrieve it.

That might be why so much of my prior life is a blank. I’m otherwise engaged in the world around me, and I’m noticing things on a much more detailed level, than those big “meta” concepts and experiences.

I can’t speak for anybody else, but when I am in the thick of a situation that is innately challenging / hostile to my autistic character, I spend more brain and body cycles on navigating all of the sensory details and trying to sort through what it all means, rather than making specific memories about specific things. If somebody is talking to me about something I’m not particularly interested in, or I’m stuck doing something I don’t like, that also has an effect. I won’t necessarily invest the brainpower and really experiencing that fully enough to make any sort of enduring memory. Maybe it’s sticks, maybe it doesn’t, but there’s really no guarantee of anything.

And if someone is interacting with me or I’m experiencing life in a way that is completely overwhelming to me – someone is wearing too much perfume, the lights are too bright, the temperature is not hospitable, there’s a lot of background noise, someone feels the need to keep reaching out to touch me… or any number of other sensory inputs or intruding on my attention – there’s a slim chance that I will retain that in my memory banks. Detailed memory is probably not going to happen.

So, where does that leave me? I have huge gaps in my recollections about what went on in my life in the past days, months, and years. My family typically start conversations with me with a question “Do you remember…” and as often as not, my answer is, “No.”

I’m not sure anybody outside my head – except for the autistic folks who read this and my friends on Twitter – fully understands this phenomenon. I’m so busy parsing everything around me, that I can’t really engage fully with what’s in front of me.

Then again, I am engaged. I am involved. It might not be with the same things that everybody around me is engaged in, and I might not be making the same sorts of memories as the people around me, but I am engaged. Chances are, I am wrapped up in my own thoughts, parsing through data which I find a heck of a lot more compelling than what’s happening right in front of me, or I’m thinking about things in a completely different way than most people around me.

That’s really my strength – and when it works out – especially when I’m not exhausted. It’s a thing of beauty. I can live and interact in a world filled with people completely unlike me, and still bring my own unique perspective to the situations we are in. I can find profound joy and relief in my own particular interests, even while the rest of the world is operating in some parallel universe. They have their space, I have mine.

Somehow, I’ve figured out how to make peace with that — and make my differences work for me. I’ve adopted a persona, which I have refined over the course of decades, which works in social situations. I’ve developed a role – a performative mantle if you will – which secures a place for me in social situations. Neurotypical people seem to be comfortable with roles and performance of specific behaviors. So I’ve figured out how to do that in a way that is positive, constructive, and true to myself. Am I masking? Of course! Am I camouflaging? Of course! Everybody is, in the neurotypical world, and I think that’s something that autistic people tend to lose sight of – if we have sight of it at all, to begin with.

It’s a careful balance, of course. Balancing performance with actual essence, meeting the social requirements that will keep me out of trouble… along with being true to myself. Engaging with the world on my terms – albeit while making concessions to the larger whole. It’s not easy. And sometimes it’s not fun. And it’s exhausting. But there are enough rewards that it’s worth it for me.

I may be otherwise occupied while the rest of the world spins around me, but I am still engaged.

Sharing : Rethinking Autism: From Social Awkwardness to Social Creativity

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

Read the rest of this great article here

Self-defensive #autistic camouflage or cross cultural competency?

side-by-side pictures of a woman standing with an umbrella - on the left gray and burred, on the right, clear and sharp and colored

I’ve been thinking a lot, over the past few months, about camouflaging, masking, and otherwise concealing my autistic tendencies from the people around me. I’ve been doing this all my life, and much of what I do in this regard is really reflexive. It’s not necessarily something that I do intentionally, it’s just a seamless adjustment to the immediate environment.

There is been an increasing amount of talk about how autistic women get missed, don’t get diagnosed, and miss out on a lot of support because clinicians and other people in positions to support them don’t actually recognize the autistic nature of their traits and the challenges. What people observe in us — and then see — can be very different from how we know our lives to be. And it can cause tremendous suffering. I’ve been through much of this, myself, and it really is annoying to be told by others that I seem too “normal” or I don’t “present as autistic at all”, so therefore it must not be a genuine issue for me.

There are so many things wrong with that point of view, I can’t begin to count them. And if I were to write up a response, my rant would last for a good 20,000 words at least. So, I’ll spare us all, and take a different – and slightly more positive – approach to this conundrum.

Autism has been discussed here and there in terms of being a cultural difference, as well as a neurological one, and it seems to me that in that light, we could consider so-called masking or camouflaging as just another form of cross-cultural competency. I lived in Germany for two years while I was attending university, and I generally passed for European. That was fine with me, because those were the Ronald Reagan years, the Cold War was in full swing – starting to flame out, actually – and Americans did not have a particularly good reputation in the part of the world where I was living. So, it was more to my advantage if I concealed my American citizenship, and I blended with my surroundings.

Did that make me a traitor? Did that make me disloyal to my country? Some people might think so. But the area where I lived was not very well-versed in what it really means to be an American, and there was a lot of prejudice, bias, even discrimination towards mainstream Americans. I was not a mainstream American, so they actually had no quarrel with me… so why should I have to be vexed by the problems caused by people other than me?

It was rare that anyone thought I was American. My accent did not betray any trace of the United States, my clothing choices were strictly European, my habits of schedule and the things I bought for myself and ate for meals, were all distinctly European. In the end, I did return to the United States and not long after I got back, I started to really understand what an American I really was.

So, my passing as European ultimately did not change anything fundamental about who I was, where I was from, or my character.

The very same thing can be said for me now, as I pass within the neurotypical world. I have a distinctly autistic outlook in life, I have the full range of hyper- and hypo-sensitivities, and when left to my own devices or surrounded by other artistic folks, my very neurodivergent character shows up in plain view. I stim, I rock, I go on in great detail about my passion projects.

But when I’m surrounded by non-autistic individuals, it serves me better to blend in, to meet them on their own terms, and interact with him in a way that will facilitate communication rather than block it. I mirror them. Because it works for us both.

In many ways, this is like moving to a country or living in a country where your native language is not the official language. That doesn’t make your native language any less valuable or useful, it simply means that in order to get along do you have to conduct business in the official tongue of the place where you live.

The same holds true for customs and etiquette. It’s all very well and good if I have my own sensibilities about whether or not to shake someone’s hand, whether or not to eat with my fingers, whether or not I should wipe my nose on my sleeve, or spit on the ground around me. But if those behaviors are not acceptable within the cultural context of where I am, then doing them puts me at a social disadvantage, and it also disrupts the customary interactive flow of the world where I reside.

Being autistic in a non-autistic world is for me really no different than living as an immigrant in a whole new country. If I’d moved here from Balochistan, I’d still live out my years as an ethnic Balochi. And as much as I may seek to adapt and blend in, and as much success as I may have a doing that, it still never gets rid of my “ethnic” autism. Because, that’s my nature.

Looking at things in this light, the stresses and strains of camouflaging, blending, fitting in, all seem a lot less vexing to me. If I get caught up in thinking how hard it is that I have to camouflage, how hard it is that I have to make the extra effort to blend in, I can quickly start to feel like a victim who has no place in the world around me. But if I look at this as just another form of cultural competency — knowing how to meet the requirements that we all have to meet, on some level — then it seems more like a skill and less like an affliction.

Of course, that doesn’t change the fact that it’s often not easy and that it often takes a lot out of me in terms of time and energy and even money. I don’t want to amplify the glories of blending, acting as though there’s no cost. There is.  But I’m still dedicated to job bringing myself into alignment with my immediate world, because it’s important for me to do well with others, to do right by our relationships, and to have as full a life as I can… even as I do make the concessions and the sacrifices that are required to simply get by.

So, as with many things, I have very mixed feelings about the whole business of blending. It’s a useful thing, but is demanding. And sometimes it takes so much out of me that I have nothing left for my own life, when I’m done with taking care of my obligations. It’s not easy. It’s hard.

But at the same time, I don’t want to make it sound like it’s a horrible cross to bear, or that there’s no element of choice in this for me. I think for me, there is a certain element of choice, even while I just instinctively blend, almost by reflex. I suspect that women do this more readily than men – then again, I know of a number of autistic men who do this instinctively, as well. So I don’t think it’s fair to make generalizations in this respect. I’d rather talk about my own experience and leave it at that.

Would I ever want to not have to blend? Would I ever want to stop camouflage and completely? I don’t think so. For me, social interactions are very much a business – they’re transactional, they transcend the individual, and they require extra effort to be successful. I think that everyone makes certain concessions to others when they interact, and it’s important to me that I do that for the sake of others, as well as the sake of the relationship that we have. If there are people around me who or comfortable with my autistic quirks, then they will see those autistic quirks. But if they’re not, I’m not going through the effort of dealing with them and their biases.

I can avoid that. I’ve trained myself well.

Bypassing the rings of #autistic hell

 

hermann herzog painting of man in boat on a lake

Heaven help me and Creator forgive me (I’m sure they will)… I’ve declined to attend my nephew’s wedding celebration in August. It’s the ultimate familial infraction, because this is the eldest son of my only biological sister… my first nephew… who acts and looks like a poster child for a Tony Attwood book. If there’s any wedding I “should” be attending, it’s his.

But I can’t. I just can’t. The recent 4-day trip to my in-laws laid me out with multiple meltdowns that trashed any semblance of self-esteem and confidence I had. Over a week later, I still haven’t recovered. It’s going to take weeks to get back to my regular self, my super-effective, balanced self. By the time I’m back, this next wedding will come ’round again. And then I’ll be laid out again — because my own extended biological family is even more kinetic and chaotic than my in-laws, and they are highly interactive. It’s just too much. All that sensory seeking drama … no, thank you.

So, I had to decline. Plus, I declined my other nephew’s wedding that’s happening this weekend, and if I’m not going to one’s, I’m not going to the others. It would be playing favorites, and I need to be an equal-opportunity offender.

Offender… whatever. I have to take care of myself and my little family. I just can’t put myself through it. And I’m not putting my partner through it again, either. There’s no way. I think she had an even harder time with my meltdowns, than I did (if that’s possible). And it’s going to take weeks, even months, for her to feel some sense of stability around me again.

I have to keep my priorities straight.  So, yeah, I’ll suffer the displeasure and disapproval of my family. I’ll steel my nerves against their slings and arrows and guilt-inducing sighs… and I’ll keep to myself that weekend, as it should be.

I really love my nephew and his soon-to-be-wife. I’d love to be there. I just can’t deal with the melee. I look forward to spending time with them — away from the madding crowd. Far, far away from it.

At least I know I’m not alone. There are plenty of other autistic and highly sensitive people who get overwhelmed by this kind of stuff. And who have to opt out, because it’s just too much. The price is too high. The cost too dear. And the “return on the investment” is minimal.

This passage in Odd Girl Out really spoke to me:

… good feelings can be as overwhelming as the bad.

I can’t name my feelings. I don’t recognize them. Don’t know what they look like. … I like words that sound as they should feel.

… I want to experience life in neutral. Not feeling anything much. For me, the absence of sensation is better than experiencing anything too jarring, too unexpected, too new. I want to move through life with no sudden movements. Sameness is my anchor. I want each day to unfold quietly and predictably.

That pretty much says it all for me. Each word. Each line. I can relate.

Sameness is my anchor, too. And a wedding in August in an intensely humid mid-Atlantic state, surrounded by milling crowds of people… well, that rips up my mooring from the quiet cove where I’ve anchored and sends me adrift in a strong current that leads directly to a waterfall. Who knows where the waterfall will take me? I don’t want to find out.

iceland waterfall
Who knows where the waterfall will take me? I don’t want to find out.

And so, while everyone else in my family is flying / driving / taking the train in to these events, gathering in loud, tactile, bright throngs of milling relatives (many of whom I don’t recognize immediately, ’cause, well, face-blindness)… I’ll keep to myself, continue to nurse my wounds and get myself back on track. Keep myself away from the precipice of depression and despair. Get on with my life. Fish in my own little cove, while the rest of the world jumps in their inflatable raft and heads down the rapids.

I’ll be here when they get back.

They know where to find me.

Sharing: Being autistic – how didn’t anyone know?

trompe loeil facade on a building
It’s so easy to blend in, when no one knows what to look for

It’s pretty easy to get missed, when you’re autistic. Diagnosticians generally just don’t know enough. The ones who are current are few and far between. Here’s yet another story about getting missed.

“I was formally diagnosed as autistic at the age of 41. How was it possible for me to have lived over 40 years without knowing? It may seem surprising but I had no inkling whatsoever, despite having worked with autistic people and those with learning disabilities for many years. I thought I knew about autism. I was wrong.

I knew about some of my mental and physical health conditions – mostly things that by themselves never met the eligibility criteria for services. The exception was the suicidal thoughts I experienced when I was 14. These led to a prescription for Valium and regular psychiatrist appointments for the next 18 months. The psychiatrist would refuse to start the conversation so we mostly sat in silence during the appointments, which was very unhelpful. At this time I was also aware of difficulties with my hearing – an inability to filter out background noise. I also found it hard to make and keep friends.

As an adult, I finally started to take my partner’s ‘jokes’ more seriously and eventually took an online test. As it turned out, she hadn’t been joking at all, but I didn’t really notice. Eventually I took an online test. My score was so high that I could that I could no longer ignore the possibility that I may be autistic.

Continued…

Read the rest of this great piece here