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.

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Five-day business trip coming up – pros and cons and #autistic preparation

view of city street with people milling around

So, I’m flying across the country for a business trip. It’s a user conference for a new technology I’m helping to implement at work. The application is on the leading edge of its field, so this is a good opportunity to “peek under the hood” and see what all is there.

It might also be a good opportunity to connect with other people in my field… to see about jobs… I’m treating this like an extended job interview of sorts.

I’m both dreading this trip and looking forward to it. My partner can’t come with me 😦  and I hate traveling without her. She hates it, too, but it just wasn’t going to work, this time.

On the upside, I’m the only one from my work group traveling. Usually, for my business trips, I usually get stuck traveling with my co-workers. It seems to calm them down to move as one group, but I find it a source of irritation. I’d much rather move at my own pace, on my own time, and not be subjected to their non-stop inanity. Seriously, how much blather can a person stand? Apparently, they can stand a lot. And it’s not blather to them, for some strange reason.

Well, that’s not going to be my problem, this trip.

I’ve been preparing in fits and starts. I made my list today — and a very long list it was. Had to turn it into two columns for it to fit on the 4×6″ lined stickie note. I’ve done the vast majority of the things, with a handful of more involved stuff still pending. I’ve got a handful of things I need to do in the morning, too, before I leave at 6:30 a.m. It’ll get done. I just need to make sure I’m up early enough to do everything and not make myself more frantic than necessary.

Well, I’ve gotten plenty of practice at this, so far, this year. This is my 4th flight in 6 months. I flew out to Texas in January and March, then flew to Atlanta in May, and now it’s off to California in June. I’m hoping I’ll find another job before I have to make another trip, but I may need to fly out to Texas again before the summer is over. I’ve learned a lot about how to breeze through all those lines… checking in online, packing super-light (so I don’t have to check a bag)… wearing the proper clothes to quickly and easily slip in and out of shoes and jackets in the security line… figuring out how to get around airports, figuring out public transit, taxis, etc.

Business travel is always so grueling for me, but I do it.  I could probably become an expert at it (actually, in the past, I was approaching expertise, when I had to fly to France all the time). But it still wipes me out and destroys my peace of mind, equilibrium (literally – I get very dizzy and vertigo-y), and it burns up all kinds of resources I need for other things. Especially when I’m traveling for business. I need to be at my best. I’m in unfamiliar settings, dealing with other people who are unfamiliar to me, as well. I can’t stop the steady stream of intrusive thoughts and concerns. Will I mess up? Will I blurt something out? Will I make a fool of myself, or appear untrustworthy or unprofessional?

These are not unwarranted concerns. I’ve done it before, and I may do it again. Just handling those thoughts and managing my anxiety adds a whole other layer of difficulty to it.

I would love to say, “Well, I’m all grown up now, so I’ll just suck it up and do my job.” But there’s more to it than that. And frankly, being autistic and not having a lot of models or examples from others to follow doesn’t help. If anything, it just makes it all worse. Because I should be pleased with having an all-expenses paid trip to San Francisco. Because I should be excited to see the sights and hob-nob with other industry leaders. I should be looking forward to the change of pace.

But I’m not. Not at all. I do feel some of those things, but more than that… just a steady sense of dread. Dread. More dread.

Well, I can’t keep dwelling on that. I need to get ready for the trip. Take care of business. Make some calls. Get a few logistical issues settled. And get to bed early. I’ll have 8+ hours to myself tomorrow, which will be lovely. It will give me time to review the proof copy of my sensory overload memoir that I’ve written and plan to release later this summer. It’s not every day I have that much time to myself, but tomorrow I will. So, that’s good.

Bottom line, I’ll do what I need to, and I’ll try to keep balanced — and focus on the good that may come out of this. It’s just a lot to process, but it’s not all bad.

I’ve done this before. I survived. I’ll do it again.

And when all is said and done, it’ll be more experience for the record.

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.

Turning the corner into the blissful void :)

triangular skyscraper with blue sky and clouds behind it

Ha! I thought it was Saturday. (It’s actually Friday)

This short week has been so strange.

I had “off work” on Monday, but I had a massive meltdown, following four extremely arduous days with my in-laws (which included a mini-meltdown on Sunday).

I’ve been feeling pretty dismal all week, really “hungover” from the emotional flame-outs of Sunday and Monday, not entirely here, but still able to function really well at work. I guess that speaks volumes about how well I do when I’ve got hard-and-fast routine, and expectations are clearly stated for me. I’ve actually been doing much better at work, than at home.

Which is why I’m going into the office today.

Normally, I work from home on Fridays, but not today. I haven’t been able to swim at all this week, because of deadlines, sudden requirements popping up, things falling apart, and just not feeling up to making the short drive to the building where the pool is located. I’m feeling it, too. I really notice when I haven’t been swimming. I miss it, my body misses it, and the days become interminable and painful.

So, today — as I got all my wretched deadlines handled and “put to bed” last night — I have an easy day. An open day. A day full of … nothing specific. And that’s wonderful. Because I need room to breathe. Room to stretch. Room to just settle into my work, without constant interruption and aggravation, and get something done.

For the time being, anyway.

My job is very non-secure at this point in time. Supposedly, there are layoffs coming in another month or so, and it’s going to be “BIG”. Huh. Whatever. I have scrimped and saved and shaved down my costs of living, so I can save aggressively. And in the past 2 years, I’ve cobbled together six months’ worth of living expenses, which is regal, compared to where I’ve been for years. I mean, seriously, it’s been a loonnnnggg time since I’ve had this amount of money in the bank. Medical issues, job issues, terrible commutes that drained my coffers via my car’s fuel tank (and drained my physical energy as well), and just a long string of bad choices and unmanaged expenses from the pre-Aspie-awareness days… they really sucked the life out of me.

But in the past couple of years, I’ve been able to save (and save and save), and now I have enough money to float freely for six months — six months! And that’s being conservative. But it’s best to be conservative. Not doing that, is what got me in trouble in the past.

Anyway, the way things are at work, either I’m going to get promoted, or I’m going to get a severance package. A package or a promotion — how Aspie of my professional life. I literally have No Idea how I stand with other people, so I just make it up as I go along. And I’ve now reached a kind of  “Office Space” frame of mind, like the main character who sees how things are going with layoffs and decides, “Oh, fck it! I’m just going to play along and not give a sht about the consequences!”

It’s actually quite freeing, I have to say. I mean, I’ve always been so conscientious about my job performance. And for what? Please. I’ve been dragged by proverbial corporate horses for years and years, my foot stuck in the figurative stirrup as the Overlords have done as they pleased. That’s how it works. Anybody who thinks differently is in for a rude awakening. I look around me and see my coworkers all so invested in their jobs, their identity, their roles. Huh. How ’bout that. I can’t see the point. I can see the point of a paycheck, that’s for sure. And having a pool to swim in. That, too. But getting my identity all “interlaced” with this nonsense… yah, that just doesn’t make any sense anymore. At all.

So, whatever happens, happens. I’m going to let it play out. If I get laid off, I have six months’ worth of living expenses in the bank, sitting in a secured account. If I get promoted, that’s fine, too. Whatever. It’s all pretty much of a farce, anyway, which just gives me the freedom to write when and how and whatever I like, without needing to worry about editors and publishers blocking my path. I can schedule my life as I please, do the things I love to do, and hang out during the day with smart people who are also in the Paycheck Continuation Program, and would jump at the chance to go on vacation or spend more time with their kids.

Oh, yes… this is freeing indeed. It totally relieves me of the burden of illusions about what the corporate world is about, these days. It relieves me of the burden of feeling responsible for the Way Things Are, feeling responsible for things that are really out of my control, and feeling like I should be doing something to make everything better for myself and my household.

Nah. That glorious over-optimism is an artifact of my youth, my bright, shining, hopeful youth, when I had no idea how things were structured or organized. That youth has persisted over the years, and it has stayed with me until relatively recently… as has the rigid thinking that stuff is supposed to be A Certain Way, and it’s My Responsibility to make it That Way. Time to split the difference, cut my losses, just let the shtty things be shtty, and not worry about it. Just focus on what I can control and influence, and leave the rest.

One of the great things about my newly liquid financial situation, is that I have living proof that I can live comfortably at my current salary. I’d been thinking that I needed to trade up and make a better salary. Granted, more money would be nice. But the range I’m in right now has a lot more job possibilities in the market, than the higher rate, so I could keep going at this rate and still be relatively solid, money-wise. And I might actually be able to pay for some of the house repairs that are sorely needed.

Oh, all this thinking is getting too involved for me, now. I really need to just chill out and quit fretting about the future. How I’ll get by has been a constant, daily, nagging worry for me, for the past 10 years, which has worn me down.  I’m tired of that. I’ll be celebrating another birthday in another couple of weeks, and it’s true — when you get past 50, you start to get happier. At least that’s true for me.

After so many years of being miserable, driving myself and pushing myself towards MY GOALS, it’s time to just let myself live. All that striving… and for what? For what? Nothing much came of it, really. And I ended up worn out, used up, depressed, melted down, and so forth.

I can do better than that.

It’s perfectly fine if I just let myself melt into the void — in the most proactive way possible. It’s not about ending it all or disappearing, but simply drifting into the Flow that carries us all along… letting good things happen, along with the bad, not trying to control the outcomes the way I have been… finding out what happens when this-or-that happens. I really just want to do science with my life at a very high level — on every level, actually. Drop the judgment and fretting. Observe. Learn. Take the hard lessons, learn from them, and reap the rewards that come with the learning.

Just go with it, see what happens, and let things develop along the way. Let myself be gloriously autistic, let myself be glorious, period.

This dumpster fire of a world has gotten me down long enough. I have a choice. I can suffer terribly, or I can just live my life and glean what goodness I can get from it. And there’s a lot more goodness there, than I generally realize or accept.

Time to change that around. My perceived misfortunes aren’t doing anyone any good, most of all me.

I’m free to come and go as I please. I’m free to do what I need to do with my life. It’s taken me decades to get to this point, but now that I’m here… why not just go with it?

Why not indeed…

My very ordered “disordered” life

cable span bridge sliced in three sectionsIt always puzzles me, when people call Autism a “disorder”. Seems to me, a lot of autistic folks have a hell of a lot more order in their lives than the rest of the world.

I have my routines. I have my regular stuff done at regular times of the day. I have my regular activities pursued at regular intervals. I have a really great cadence which, unless it’s interrupted, allows me to get a whole lot done in a very small window of time. In the course of an average day, I can have a to-do list that runs off the page of the 4×6″ stickie note I keep in my daily minder. And I will get everything done — and then some — in a seamless flow of “Okay, that’s done – what’s next?”

I tell people what I do each day, and they shake their heads and tell me that I do “too much”. But for me, that’s just how things flow. In fact, everything works better for me, if I have a whole lot of stuff lined up in a seemingly impossible jumble of imperatives.

Something about “juggling” (it’s not that at all, come to think of it) stimulates my visual-spatial thinking, prompting me to see the world in a very different way than the verbal, sequential folks who surround me. My way may look like “controlled chaos” to some, but it’s nothing of the kind.

It’s all very orderly, I have to say.

It might not make a lot of sense to others. Of course it doesn’t. Not if those others are neurotypical. Not if those others are not visually-spatially inclined. Not if those others’ priorities are with skating along in a standard-issue life, doing what they’re told, living up to others’ expectations, and fulfilling the requirements laid out for them by society at large. In some cases, you need only meet the basic requirements of mainstream society, to get by. Assemble the right kind of family. Get the right kind of job. Wear the right clothes. Drive the right car. Buy the right stuff — and make sure everybody knows about it. And you’re set.

That doesn’t work with me. I have priorities other than social acceptance and accruing stuff. Even if I do try to pay attention to those things (and I do try, every now and then), I rapidly lose interest, because they really serve no greater purpose in life, other than to make me feel a little better about my lot. I want to change my lot in life, not make a grudging peace with it and make myself comfortable till the grim end comes.

And so, the rationale and the reasons behind creating certain kinds of “order” in my life evaporate. Because they just don’t work for me.

Now, if you turn things around and turn a lens on the rest of the world from my perspective, all the “disordered parts of my life start to look very ordered, indeed. There’s an excellent reason for everything I do, and chances are, I’ve given it a whole lot of thought before starting to do it. Even the things that I haven’t deliberately put in place, if they’re in my life, they serve a vital purpose. Or they wouldn’t be part of it.

The ritual I follow each morning serves to get me up and going in the morning in an efficient and energizing way, without needing to spend too much time on reinventing the wheel of my morning activities.

The specific sequence I follow to get myself groomed, exercised and fed each morning, I’ve developed over years of practice and trial-and-error. It would take too long to explain each step, to go into it now. Just know that the specific sequence I’ve developed has been for a very good reason.

How I get to work, how I set up for my daily activities, the times I eat, the things I do to perk myself up or calm myself down… it’s all for a reason. For a number of reasons, actually.

If people (friends, family, loved-ones, clinicians, researchers) would look more closely, they’d see the reasons. And if they could spend a day in my shoes, living in my own experience, they’d totally see the logic of it. And they’d congratulate me for coming up with such an elegant system.

Ultimately, I think the origin of at least some of the “disorder” talk is the lack of understanding among researchers. And parents. And loved-ones. And, well, anyone who isn’t privy to the logic of my / our systems. Those who don’t understand Autistic ways and thought patterns. It’s easy to be put off by something foreign and unfamiliar, and (often-times) that would be us.

It would be wonderful if we didn’t have to verbalize everything for folks who see us as disordered… if they could actually experience our lives as we do. Maybe virtual reality will make that possible, someday. I think it already is, actually. But it’s going to take more than a VR session to get people educated and informed.

We’ve got our work cut out for us, that’s for sure.

In the meantime, I’ll go about my business and tend to my systems, my own individual order.

Regardless of what others have to say about it.

Everything has its place, I suppose

line drawing of a laptop and papers hanging neatly on the wall behind it
I like my stuff properly arranged. Of course, not everything is going to line up exactly. A little asymmetry can be creatively inspiring.

Last evening, I saw a handful of folks I haven’t seen in a while.

It was good to reconnect. They’re all a bunch of Aspies, and it was cool to just hang out and talk about what’s going on in our lives. It’s pretty wild, how many similarities there are, with detailed variations, of course. We got to trade tips and tricks on stuff that stumps us. There were some ah-ha! moments that we all enjoyed. And some laughter. And we all got to reassure each other that we’re not completely alone in a world that can’t seem to be bothered to understand us.

It’s Friday! I’m so looking forward to this weekend. Getting back on a schedule, after a week of surprise meetings and stuff not going according to plan. I have to get my routine fix while I can. I’ll be traveling in less than a week to spend time with family in the Atlanta, GA area. It’s crowded there. And hot. And busy. And there’s a lot of family drama going on, which drives me to distraction. People whipping themselves into a frenzy over a perceived slight. Where’s the logic in that? We’ve got three days of that to look forward to (so to speak).

I don’t want to go. I dread it. I really want to just ditch the whole thing, and I’ve shed anguished tears at the prospect of what’s ahead. But there’s no avoiding it. It’s important to go. So, I’ll steel my proverbial nerves and just hang in there. Focus on one small thing at a time. See what I can learn about myself and the world. Treat it as an anthropological expedition — and always-always-always keep in mind that it’s only for a few days. All I have to do is keep steady, keep an even keel, keep a level head, eat right, get enough sleep, and persevere.

I’m good at persevering. It’s what I do. It’s a much-practiced skill.

So, this upcoming trip is just another test. Another chance to learn a thing or two. I still have to do some basic things — like reserve a car at the airport. Figure out what to pack. I’m less concerned about the car situation, since, well, it is the airport. I need several hours of free time to sort through my options and pick the best one. And after I figure out my part, the overall logistics have to be figured out and solidified with my partner and her family, so we know where to go, what to do, and in what order.

The dysfunction of family dynamics is so tiring. I’m trying to not pay much attention to the lying, cheating, sneaking-around people who are trying to manipulate the whole event. That’s fruitless. I’ve learned that over the past 26 years. I’ll just go with the flow and enjoy myself as best I can. If nothing else, this will be character-building.

Just think how much character I’ll have at the end of it all! 😀

Oh, and then I have another trip to San Francisco less than a month later. That’s for work. A conference. Learning and working and — most importantly — no family involved. It’ll be a challenge, because it is travel, it involves business, and I’m headed into unfamiliar territory.  I used to live in northern California, years ago, so I may see some of my old “stomping ground”, but probably not much. I’ll be traveling alone, pretty much, which is fine. But that means I’m probably not going to range far and wide and see the sights like I used to, when my partner was with me.

Or, I may see some sights with my co-workers. Who knows? I’ll need to figure that one out, I suppose.

Anyway, so it goes. I’ve got a nice empty schedule today. And my 8:30 meeting just got moved to Monday, so that gives me even more flexibility today, to catch up with everything I haven’t been able to get done this week.

And have a little routine. Get to the office around 9:45, settle in, eat some cereal at 10:15, respond to pending emails and prep for my noontime meeting, have some lunch, do some more work, go for an afternoon swim, then finish up the day with getting outstanding stuff sorted out. Sounds like a plan.

Oh, and plan. Plan. Plan some more. Things rarely turn out exactly the way I anticipate, but having a plan helps me organize my thoughts and at least have the general impression that I’m prepared for whatever comes along.

It’s all good. It’s Friday. I get to move at my own pace. Quietly. Swiftly. With everything in its place. As it should be.

Oh, sweet peace.

When the little #autistic components of life click into place

picture of two people facing each other, person on the left has a gray brain, person on the right has a rainbow colored brainI had a very nice chat with someone today about how autism affects my life. And in the process, I realized some things that hadn’t occurred to me before.

Namely (and I may think of something else, eventually), I don’t really lose a lot of sleep or get terribly agitated anymore about social “gaffe-ish” situations. I’ve got my stock set of responses to social / interactive situations that confuse and puzzle me — especially those which seem pretty useless, e.g., when they center around mindless jabbering while eating cake.

I’ve got a standard way I react to people, a standard way I hold myself and I echo / mirror other people’s behaviors. I have a stock set of responses (“Seriously!” or “Really?!” or “Oh, I know!”) which I generally rattle off without even knowing what I’m reacting too. It takes time for me to parse the information that’s coming it, translate it to pictures, make sense of it, generate new pictures, and then translate it back to words that may or may not mean anything to others. I usually don’t have that kind of time to respond genuinely, so I just spout out this mindless blather. I miss a lot. Including the point of being there. But oh, well. So it goes.

And you know what? I don’t care. Because the vast majority of what’s going on is vacuous and inane. It’s generally not anything I care about. But I still need to be around people. If I don’t interact with others on a semi-regular basis (God help me), I become suspicious and mistrusting, caught up in my own internal dramas that may or may not have any basis in reality. I need feedback from other living, breathing people to help me steer myself in the proper direction – not off a conceptual cliff.

So, I get what I need — some interaction. But I don’t pay much mind to most of the content. Especially when people are hanging around in a crowded, noisy space (why do people like places like that, anyway?). Then, it’s purely a matter of socially getting by. Doing the bare minimum. Satisfactorily completing the social interaction in ways that don’t harm me — and may actually add to my own social cred.

I do what I have to, reap the rewards, and move on.

I just don’t expect much from it. And so, I am seldom disappointed.

A place for everything in this busy life

interwoven mesh of different colors and shapes
Everything fits with everything else.

I have a lot going on, these days.

And it’s all good.

There are people in my life who encourage me to “slow down”… “take it easy”… not push myself too much.

The thing is, when I’ve got my proverbial “plate” full of all kinds of things I’m doing, I’m actually much better off, than if I’m pacing myself and not pushing my limits.

See, the difference between how I do things and how others do things, is dimentionality. That is, I don’t do things in a linear fashion. I can’t. I load them in on top of each other, and they fit together as different dimensions of the same types of activities.

It’s easier for me to write three books at one time, than do one, finish it, then start another. I have a bunch of books (more than three, actually) in the works, and I’ve been stalled for the past few months — mainly because I was under the impression that I had to take them one at a time… and not start the next, till I was done with the last. Huh. Yeah, that hasn’t been working. At all.

Likewise, at work, I’ve got a handful of different initiatives happening, and they’re all quite “exciting”… and not in a good way. Stuff keeps getting messed up, the different teams keep veering off course, and I’m not happy about it. The problem is, I’ve been trying to handle them, one thing at a time. And that’s not working. At all. I can’t stop things from happening at the same time, nor do I do well when I try to manage one project at a time. I need to “load up” and move everything forward in parallel.

I’ve really been doing myself a disservice, by trying to manage my projects and my overall workload in a sequential manner. That’s not how I work, it’s not how I function best. It’s a drain, in fact. And it frustrates me to no end, when well-meaning people urge me to “back off” and not push myself so hard.

News flash — I’m NOT pushing myself. I’m going with the unending flow of creative process. That’s where I need to allow myself to “be”. That’s how I need to allow myself to work.

If other people don’t have the capacity for this, it’s none of my business. But they also shouldn’t hold me back, thinking that I work exactly the same way that they do.

All the community I can ask for

faces behind cobweb

Well, yesterday was interesting. My partner needed some help getting home from her event, yesterday. Her colleague, (who originally planned to travel back with her so they could hang out for a day or so after that), connected with another participant who had a business opportunity to discuss. So, business took precedent over pleasure. And that was fine, since my partner was totally wiped out by the event.

It was a good one, but it took a lot out of her.

And I can so relate.

So, I drove the 90 minutes to help my partner get safely home. It was actually pretty good for me, because I got to see a lot of people I hadn’t seen in some time. I used to be involved in my partner’s business (before I started to overload and melt down, and I realized I needed to back off and take good care of myself). I miss the folks I got to see, yesterday. I’ve missed hanging out with them.

At the same time, I notice more and more, every day, just how one-sided my interactions with people tend to be. They don’t seem to expend much energy at all, when they interact. In fact, they seem relaxed and at ease. I, on the other hand, am all twisted up inside. And the repeat hugs, the constant reaching out to make contact… Oh my God… it got to be a little much, after a while.

On top of it, there were so many people there, milling around — something like 30 people, some I knew, some I didn’t, some I knew but didn’t recognize, some I didn’t know but thought I recognized. How confusing! It was like stepping into a hall of funhouse mirrors… very “trippy”… very “swirly” and totally overwhelming… I become partly blind, when I’m in those situations. I literally can’t see what’s not right in front of me, as everything spins around me, making me a little sick to my stomach. I have the vague sense that everyone and everything else is there, but I can’t  distinguish anything specific in the wild flow of energies and colors and movement… like one big blur, and there I am in the middle of it, just focusing on staying calm in my center. (Thank you Stoics, for giving me a solid frame of reference to help ground me.)

So, I’m spinning and spinning and just barely able to focus on one “Hi! How are you?! Oh, my gosh! I haven’t seen you in so long!!!” at a time, and here I am, just trying to get my partner packed up and brought home in one piece… Augh! (but in a fun-chaotic kind of way). To keep myself grounded, I focused on one person at a time, one conversation at a time. Just ignore the nausea. It’ll pass. I also focused on helping my partner gather all her belongings (she took a lot with her), and get them in the car without forgetting something important. I had some help from some of the other attendees, but again, sometimes it’s more difficult for me to communicate with others and tell them what should be done. I’m highly visual-spatial, so when it comes to getting stuff done (especially packing), I think in pictures and feelings and flow, rather than words. Being pressed for words just makes things harder.

But no biggie. I figured was only going to be there for a short time. Maybe an hour, tops. But there were so many people, and there was so much going on… and 1 hour dragged into 3 hours… and before I knew it, we were being invited out for dinner with a bunch of folks afterwards.

Cue the panic. Smiles. Laughter. Nodding. “Sounds great!” I heard myself saying. “We’d love to!” And the whole time, behind the scenes, I’m starting to lose my sh*t. Freaking out — ever so demurely, of course… wondering how the hell I was going to get out of that. I mean, I really liked each one of the people we were going to go out with, but all together… in a noisy restaurant… Someone explain to me the attraction. To this day, I don’t get it.

Anyway, long story short, my partner saved me… because she was exhausted, and she didn’t even realize it till we were headed down the road to join the others. We had to pull over twice, so she could rest and get her bearings. She was so apologetic and felt terrible about “making” us miss the get-together. But in all honesty, it was an enormous relief for me.

The ride home took 3x as long as expected, between both of us being tired, the bad weather with poor visibility, as well as stops along the way. Plus, we both got turned around and ended up on an unintentional detour that involved a close encounter with a federal prison guard. Don’t ask. It was all very exciting.

But at least we made it home in time.

Plus, I got to look like I was being ultra-social… and still got off the proverbial hook, anyway. I survived. And that’s the important thing, right?

Done with that autism spectrum “disorder” business

outlines of people in different colors

I woke up a bit irritated, today. I’m happy for the weekend, but the weather is dreary, and my shoulder hurts. There’s a whole lot of stuff I want to do, while I have the free time. But I didn’t sleep quite as much as I’d wanted to, which is problematic. Oh, well — I’ll get a nap later. It’ll cut into my plans, but so it goes.

I was also irritated about the whole designation of “disorder” that goes with autism. I got my proverbial mental wheels spinning last night, thinking about Roy Grinker’s assertion that autism is a social construct. Gah! When I think about it, it just seems like yet another straight, white, neurotypical man getting pissy about being left out, and wanting to say that a group he can’t belong to doesn’t exist, rather than accepting that he’s not part of it, and will never be, so he can’t have access to all the energy and attention he’s come to expect from the world. I hate feeling uncharitable, but honestly, the whole idea that academia can “invent” something as fundamental as the autistic neurotype… it’s both laughable and supremely irritating in ways I can only articulate in writing.

And about this whole “disorder” business… Actually, I do agree with Dr. Grinker in the sense that neurotypical society has concocted a disordered perception of autism. I believe it has more to do with society’s narrowing range of choices in terms of work, activities, etc., effectively stigmatizing, penalizing, or getting rid of the things that used to really help us live our lives as productive members of society.

Once upon a time, you could do hard physical labor all day and be a respected member of society. Farming, factory work, and other manual labor activities which help us manage our sensory issues and channel our prodigious energy, were all respected — and compensated. Now, you’re lucky if you can break even, doing many of those kinds of work. Once upon a time, you had to get up and walk… you didn’t just get in a car and drive somewhere. Once upon a time, kids played independently outside, ranging far and wide… now they sit in front of video game consoles and screens, or they’re herded into organized sports (which all seem like farm teams for pro teams, if you ask me). Once upon a time, everybody was on a schedule, and you could reliably count on things happening at pre-appointed times. Stores and other businesses were open at certain hours. Whether you were in the country or the city, you got up along with everyone else and went about your business in a predictable manner. You worked for the same company your entire life. There were structures and standards everyone lived by, and that was that. It wasn’t perfect (in fact, it caused massive amounts of suffering — and death — for people who didn’t fit the mold), but it was pretty predictable.

Now, things are different. And lo and behold, autism is popping up everywhere. Surprise, surprise. Autism and more… Disorders to the left of me, disorders to the right, thanks to the DSM. And to make matters worse, the world around us is truly, literally disordered — lack of predictable patterns, lack of standard structures. But is the problem with society and the way things are set up? Oh no! It’s autistic people! It’s mentally ill people! It’s diagnosed people! We’re to blame for making things so… uncomfortable for the “normals” in the room.

Yeah, I’m in a mood. Why not? It’s a crappy, rainy day (I know, I know, we need the rain), so why not match the weather with my frame of mind? I’ll get over it, eventually, just as the rain will pass.

Okay, back to it. Disorder. Dread Dis-Order.

Yes, I understand that autistic folks can have a whole lot of challenges (I definitely do). It can be really debilitating. And it is for me, at times as well. Yes, I get it that there’s a whole lot of suffering that happens with autists and Aspies. I get it that society has a long way to go before it’s fully inclusive (or even has a clue about us).

Nobody likes to be in constant pain from bright lights and loud noises and constant physical contact from a world that can’t seem to function without those features. Nobody likes feeling out of synch with, well, everything, and ending up each day in a depleted state. Nobody likes to walk on eggshells and constantly play catch-up.

Here’s the thing, though…

Disorder is so often in the eye of the beholder. And a lot of times, the root of problems isn’t about how you are, but rather how people perceive you… Whether or not they accept you… How they cope with your anomalous behavior / traits.

What makes it most awful for me is not so much the pain and discomfort of the condition. Hell, life is painful and uncomfortable for me, Autism or no. But the sheer volume of judgment around it adds insult to injury, and the psychic toll is far greater than any physical difficulties I experience. Yep, it’s no picnic to be in constant pain. It’s no fun to have to constantly re-jigger my plans and not be able to plan for anything, because I may have nothing left over for “extra-curricular” activities beyond my day-to-day responsibilities. It’s not much fun to have no energy left for those rare social occasions when I actually want to do something, but can’t, ’cause… well, I can’t. And living in a state of arrested development, because I haven’t had the same levels of access to information and interaction that just come naturally to the neurotypical majority, isn’t my favorite thing.

But I can deal with all that. I can manage my pain. I can manage my symptoms. I can wade through the confusion, the frustrations, the anomalies. It’s just when people around me start behaving badly, that things work my last nerve.

The narrow-minded lack of respect.

The ridicule — particularly the kind of light-hearted (but incessant, relentless) criticism of autistic / Aspergers traits that borders on really bad taste, even outright persecution of Big Bang Theory.

The lack of imagination — good gawd! the sheer lack of imagination and inability to accommodate any differences at all!

The lack of freedom, the constraints and requirements… the looks you get from people. Sheesh.

The most draining thing of all for me is just the sheer volume of social static I get from people over things as fundamental and uncontrollable to me as my sensory issues, chronic pain, and the overload I have to navigate every livelong day.

So, all that being said, here’s my basic attitude, which has been in effect for years and years, and will continue to — even moreso, now that I’ve got my autism diagnosis all sorted, April is over, and the year is ramping up:

I just don’t care what others think about me. I don’t have the time, can’t spare the energy, can’t be bothered with their static.

I’m not going to wait for them to realize I need to be accommodated. I’m telling them what I need, and I’m going to either get it, or ditch them.

I’m not going to dignify their ignorance and stupidity with any attention. If people are with me, they’re with me. That’s great. Or maybe it’s not so great. If they’re not with me, I’m not wasting my time on accommodating them. I have no time left for assholes.

Now, sure, you can think, “Well, that’s fine for her, but I’m in a different situation. I’m more dependent than she. I’m less able / connected than she. I can’t just turn my back on the world and expect to survive. She lives in America. I live in ____. That means the rules are different for me.”

And you can think anything you like. That’s your prerogative. As for myself, this all comes from a combination of things I’ve done over the 50+ years I’ve been around, carrying on in my own unique way, regardless of what others thought of me. It also comes from the wonders of menopause, which has drained the estrogen and progesterone from my body and has effectively rendered me hormonally independent.

Estrogen and progesterone are notorious “tend and befriend” seekers, and they complicated my life tremendously, biologically compelling me to seek out the company of people who really couldn’t deal with me very well. I think the same may be true of many other autistic folks (especially women) who are biochemically inclined to be more socially connected. In fact, if you want to truly and honestly examine the differences between the male and female autistic phenotypes, look at the biochemistry — and that goes for all the non-binary / trans folks, as well. Just ’cause you come into the world with a certain body that’s recognized as “male” or “female” by society at large, doesn’t mean your chemistry is going to mirror that.

I’m over-simplifying to some extent, of course. How we’re wired, and the biochemistry we “marinate” in, each moment of our lives, is far more complex than that. But it’s worth considering, even cursorily.

So, where was I? Oh, yes — I’m pretty much over the whole accommodations thing. I’m done waiting for others to figure out how to help me. And I’m done asking for their consideration. I’ve got to take responsibility for my own well-being and my own needs, and if that means I: A) engage less, or B) engage more in some unforeseen ways, then so be it.

What other people think of me is none of my business. So, I just have to go through life as I see fit. If others don’t understand or don’t appreciate my point of view, fine. Why should that affect me? What do I care, what other people think, anyway? If they’re right and/or they agree with me, that’s fine. If they’re sympathetic to me, wonderful. Then again, it might not be so wonderful, because people who think they’re sympathetic or (heaven help us, “empathic”), or who go out of their way to be that way, can get it all wrong and have no clue just how terribly wrong they are.

What is my business, is how I react to them. If someone is not intending to be an asshole (and they are trying to be just the opposite), but is coming across that way to me, I need to check myself and not meet their supposed assholery with my own deliberate assholery. People are clueless, when it comes to things outside their personal experience. So how am I supposed to expect someone who’s not autistic, not queer, not a woman, and not privy to my own highly unique range of experiences, to have a fucking clue how to deal with me?

They can’t. They can’t, and they won’t. But that doesn’t mean I need to be mean-spirited to them — even if it feels like I’m defending myself and my honor. If someone doesn’t mean to be a jerk to me, but their “sin” is one of omission and/or ignorance, I can’t get all up in arms about what a terrible person they are. Because they’re NOT a terrible person. They’re an ignorant/uninformed/clumsy person trying to do the right thing. Even if their choice of words is awful. Even if their choice of imagery is wretched. They’re still often trying to do the right thing.

Lots and lots of people (neurotypical or otherwise) tend to lack skill in many areas where I have expertise. I’m special that way 😉 and I need to get a grip and not get my hopes up about how well they’ll perform around me. Chances are, they’re going to be really clumsy — just like I get clumsy when I haven’t slept, I’m distracted, and my sensory issues are pinging off the register. But I need to exercise some generosity of effing spirit and give them the chance to be the best person they can be at that instance.

I firmly believe that people genuinely seek to be successful — especially socially — and when they screw up with me, it’s often because they’re out of their depth. They’re trying to move up to a new level, and their initial attempts are blundering at best. Yes, sometimes they can be mean-spirited assholes. But what does that have to do with me? Nothing. I just don’t have to meet them halfway — or meet them anywhere.

Regardless of what folks are doing outside of myself, I have to tend to what my interior experience is like. I’m responsible for my own interpretations of things. And I’m responsible for coming up with my own solutions. Ironically, I learned the most about how to advocate for myself from my late mother-in-law, who was very ill from a very young age. She knew how to make sure she got what she wanted and needed, and I learned all about how to interact with able-bodied people as a disabled person, from watching her tear through life like hell on wheels. She didn’t settle for being treated as “less than” by anyone — man, woman, or child. She stood up for herself. She was fierce. And she was severely limited, physically. She was an invalid. But you know what? She Tore . It . Up. She never settled for less. If anything, she pushed everyone around her to do better, be better, and also make sure she got what she needed.

I swear to god, I need to write about her, sometime. She blew away all the presuppositions about what it means to live disabled in the world.  She was disabled, but she was more able than a lot of non-disabled folks. She moved the world from her place in it — like FDR in his wheelchair. She didn’t wait for anyone to offer things to her. She decided what she wanted, and she got it. Heaven help you if you stood in her way.

So, I’m done with internalizing the messages about “disorder”. I’m done with even worrying about my “disordered” state. Please. Don’t even start with me. Look around — who’s disordered here, exactly? Nobody like me would ever have created the circumstances around us, and autism-and-all, chronic-pain-and-all, underemployment-and-all, near-bankruptcy-and-all, I’ve been putting my proverbial shoulder against the wheel of social change and justice pretty much my entire life.

A lot of shit that tweaked me, months ago, I realize was not worth the investment of energy. Getting tweaked about others’ dramas is not worth the soul-sink. I’ve put filters up on Twitter to block out obnoxious wailing and gnashing of teeth about THE END OF THE WORLD AS WE KNOW IT, as well as the dire predictions of ALL THE PEOPLE WHO WILL DIE. Sheesh. First of all… No, never mind. I’m not going there.

There are so many other places to “go”, and I need to take leave of the old, worn-out thinking that by increasing my own suffering, I’ll somehow reduce someone else’s. You can think that if you like, but I differ.

If you agree with me, then great. Or not. Doesn’t matter.

At the end of it all, what matters most is that my life is my own, I’m responsible for my own thoughts and experience and expression. The rest of it… it’s being taken care of by others who own their piece of it. If they don’t do right by their part, that’s too bad. But it has nothing to do with me — not their conceptions of disorder, their ideas of what’s right and what’s wrong, their devotion to a constellation of meanings that’s literally in a different universe than my own.

So it goes. The weekend is here. It’s time for my Saturday morning walk.