When it all comes together… eventually

person climbing up hill through snow carrying a snowboard

Well, that only took 15 years…

I’ve been working on a set of ideas — all related, each with great potential — for over 15 years.

And finally it’s all coming together.

That’s one of the reasons I haven’t been blogging on here a whole lot. Finally… finally… things have gelled with me enough to actually take shape in a form that actually works.

I know I’m being cryptic (and I have to be, because I’m in “stealth mode” with this project), but basically, I’ve written and conceptualized a whole lot of stuff over the past 15 years that I can now actually put into action.

The ideas all work together. And they’re useful to a whole lot of people. And I have access to the technology and skill (and customers) to make this fly.

And that’s how it goes with us Autistic folks, sometimes. We’ll have all these great ideas… very detailed, thorough, grounded, practical, transcendental… and it can take us years and years to finally fit them all together into a way of being, working, thinking, living, that’s superlative. Super fantastic. Transcendental.

But it takes time with us. And we have to have the right conditions to work under. If we don’t have the time and proper conditions, it can kill off our ideas, our drive, our ability to think. Sometimes it kills us, period. However, if we’re given the right support and the right environment… well, the sky’s the limit.

Yeah… I’m not sure “support” is the word I’m looking for. It makes us sound dependent. Needy. Like we can’t do it on our own.

Look, we Autistic folks can do a vast amount of things on our own. If the world isn’t constantly trying to kill us. If it’s not dead-set on destroying us, because we’re different.

I was fortunate to grow up in an Autistic household, surrounded by Autistic friends and neighbors. It wasn’t “weird”. It was how we were. And neurotypical people were the “weird” ones. I’m lucky that way. I grew up knowing how to love my differences and let my freak flag wave wild and high. I also didn’t give a good goddamn what anybody else thought about me, my ideas, or what I did with my life. So I had that going for me, as well.

But I know an awful lot of Autistic folks get stuck growing up in the mainstream, surrounded by people who are bound and determined to make them pay dearly for being different. That’s pretty sucktastic. And as soon as I got away from my family and the area where I grew up, I ended up in that world, too. It can be awful. So, when I talk about things being sucktastic, I know whereof I speak.

Anyway, I have to get back to working on my Grand Plan (I love planning!), so I’ll cut this short.

Bottom line is, with Autistic folks, it can take us a long time to develop… ourselves, our skills, our knowledge, our expertise, our understanding of the world. But when we do… Look out. We are a force to be reckoned with.

Okay, that’s enough for today. Now, go out there and do some good in the world for yourself and others.

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In search of my flow state

stream flowing through forest with the flowing water in focusI’m in the process of resetting for the new year. Resetting my activities. Resetting my priorities. Resetting my activity levels. I typically do this earlier in the year, when I’m swept up in the New Year’s Resolution blitz.

But this year, I haven’t been feeling it. At all.

It’s not going nearly as well as I’d like. Work is weird. My life is weird. It’s all kind of… weird. I don’t feel like I’m fully inhabiting my own life, and I’ve been so busy with everything, lately, I haven’t had time to stim or reach a flow state for weeks… perhaps since the beginning of the year.

It’s maddening. Probably the worst thing about the way things have gone, for the past months, is the ever-increasing level of interruption in the course of each day. It’s absolutely maddening. As in, it makes me really, really mad. I have to be able to settle into extended periods of thought, in order to be effective, and my current job is preventing that on every level.

Distraction kills, and it’s doing a hack job on my performance at work, not to mention my job, overall.

Well, that’s the job, right? That’s “just how things are” in my current professional corner of the world, and anyone who can’t keep up is left in the dust. Personally, I’d be fine with being left behind. Just cut me a check and let me go. Let’s call it a day and say it was an interesting learning experience, shall we? And let’s all move on to other, better things.

But I don’t have a substantial back-up plan. I’ve been putting out feelers for work, but the kinds of work I’ve been applying for… well, it just hasn’t been a good fit. I got a job offer, a month ago, but I had to turn it down because the conditions were, well, crappy. A longer commute. Into the thick of the worst rush hour traffic in the area. Frenetic pace. Frenzied, from what I was told. In a building where they have chemicals that smell and bright lights that blind. An open work space plan. And not more money than I’m making now.

So… no. Not that.

I put in for some other jobs, and I heard back from what looked like a really good opportunity, but after I responded to them, they didn’t get back to me. I need to ping them again. There’s a good chance they took a look at my resume and realized — Hey, she doesn’t have a degree! — and, like many others, decided I “wasn’t a good fit”.

It’s a little depressing, actually.

But it’s got me thinking… About what is actually the best work for me to do. After being a web developer for 15 years, I gradually shifted into project and program management for the past 8 years or so, because it felt like the software engineering world was closing in on me and I was getting crowded out. I felt like I just couldn’t compete with all the lower cost talent with more updated skills… the people who “fit better” with organizations… or who had degrees. The project/program management space seems to be less amenable to people who literally teach themselves how to do things, than the development space. And while that didn’t hurt my prospects in the past handful of jobs I’ve had, it’s starting to feel like it’s closing in on me even more than development did.

bomb emoji with lit fuse looking down
This is about how my “career” is feeling, about now.

And indeed, the lack of flow is a huge issue. Somehow, I seem to have acquired work that I absolutely hate. Tracking other people’s activities. Communicating to everyone who needs to know about program and project status. Navigating political minefields. Battling for my territory. Making nice with people across the organization. Being interrupted every 20 minutes (or as soon as I get into a flow state). Conference calls. Lots of conference calls. With people who have thick accents and/or are on a poor phone connection. And more interruptions. Travel. Regular business travel, which doubles my workload and completely trashes my routine.

It just feels like a setup. I can do it for so long, then I am completely wiped out. Because nobody sees how much I struggle, and I can’t let on, because that would trash my career prospects like nothing else. And I can’t chance that.

The fact that I’m really good at it, is no consolation. At all.

I mean, seriously, I’m really good at it. I’m a fantastic meeting facilitator, I can communicate extremely well to people who need to know. I know how to work effectively with offshore folks (been doing it since 2002). And I can turn on a dime if the situation calls for it.

But man, oh, man, do I pay for it. In a very big way. Of course, nobody else sees how steep the price is, because they rely on me to keep doing what I’m doing, just the way they are accustomed to seeing me do it.

And seriously, this is no way to live.

I need my flow back. I need to settle into a chunk of code and just work my way through it. I need to cozy up with a tasty algorithm and just do my thang. Seriously, I do.

{pause to take a breath}

Okay, so where does that leave me? Or rather, where does that point me?

Realistically, away from where I am now. And back into the development world. In my former life (before I trained my replacements in 2002 and was then told to go find another job in 2005), I was one of the best of the best at my chosen line of work. Web development. Front-end web development. UI coding. Cross-browser. Cross-platform. Proficient in ‘nix flavors and the command line. Not afraid of anything code-related.

And it suited me. In a very big way. Because I could create things and make stuff work, like nobody else. I could convince browsers to do things they weren’t built to do. I was good. I was one of the best. And I was relieved of my duties by the bean-counters who had no idea what the work entailed. All they knew was that I was “too expensive” and they were convinced I could be replaced.

Hm.

Yeah, as it turns out (having managed a lot of projects involving developers who weren’t even close to as good as I was), I can’t be replaced. My skills are still needed. And my interview and subsequent job offer this past December (for a developer job) tells me that I still have a future in that realm. I tend to get pretty rigid about things and get convinced that since I’ve almost exclusively done project/program management for the past 3.5 years, so I’ve been telling myself that I have to stay in that space. But I don’t. I can shift back to development. I’m the only one who’s blocking myself, at this point.

Plus, I can do my own “thang” in the process. Build tools. For mobile. Just build things that show people what I do — like Temple Grandin recommends. I’ve actually got a pretty impressive portfolio, and it’s not even complete. I need to get focused on completing it, and lift myself up out of this increasingly wretched state I’ve been in, for the past year and a half, when it first started to dawn on me that this was probably not the best job choice for me.

There’s a lot I can do about my situation, right now. I can build my own apps. I can build my own websites. I can do a lot that shows how I work. And I can put the finishing touches on some projects I started over the past years but lost the energy to do them – because I was too wiped out from my day job to keep up with it all.

So, there is hope.

But for now, it’s time to go move some snow. We got a bunch of it overnight, and I need to shovel it before the temperatures start to rise. Heavy snow is no fun.

Oh, how I would love to talk about ideas…

sunrise behind clouds over the oceanSo, this trip has been interesting. I have 11 hours to go (and yes, I am counting), till I get to leave the office, get in my car, and drive to the airport. Then, I’ll have yet another bite to eat, board the plane, and fly home.

I can’t wait. I’m done here. I was supposed to have dinner with an Aspie friend, last night, but I ended up having to do a work team-building thing — going out to dinner with my coworkers, and then having ice cream afterwards. It was a good time, and I enjoyed hanging out with them. Just like I’ve enjoyed spending time with other folks, discussing work and other subjects, and everything that goes along with networking for work.

Sure, I enjoy spending time with these people, but when do I get time to decompress? All this peopling has been incredibly taxing. It’s exhausting, no matter how much I enjoy it. There’s too much to take in, too much to process, and all of it’s happening in an environment that’s inherently hostile to me and my sensibilities on a profound level. Everything around me is too too loud, too bright, too frenetic, too superficial, too political, too… everything.

And not an in-depth idea in sight, from what I can tell.

I’ve spent the last four days skimming the surface of life, and it’s about as much as I’m prepared to indulge. Everybody’s saying I should stay longer. I should spend more time. I should even move out here. They like me. I like them. We get along. There’s a fair amount of love between me and my coworkers here, and they enjoy working with me.

But it’s a one-way street, social and mentally speaking. I’m the one working overtime to fit in and adapt to their ways. I’m the one putting out the effort to blend and be a responsible individual who cultivates positive social interactions. I’m the one who’s bending over backwards (metaphorically) and putting a cramp in my back (literally) to adapt to their schedules, their food choices, their priorities, their values.

Very, very little of what goes on here and what people care about appeals to me. Living a classic American conspicuous hyper-consumer lifestyle in ways that support and further the dominant paradigm (as well as  the economy), and structuring your life around your popularity, social standing, and political connections are about as far from my main priorities, and you can get.

It’s just so vacuous… I feel like I’ve been living at an extremely high altitude for the past week, with very little oxygen, no trees, and no signs of diverse life to be found.

And nobody around me seems to notice, which worries me.

I mean, I like the people I work with. But at some point, I need to talk about more than office politics, as well as their mainstream lives. I need to discuss more than what people had for dinner the night before, or what the school schedules are. I’m out of  place, but I’m the only one who notices, because I follow other people’s leads, and I play to their strengths. It’s much easier to interact with people, when I make them the center of attention. They love it. They love to talk about their lives, their cars, their kids, their hobbies. But very, very little of it has anything to do with queer little ole me.

Which is pretty much the story of my life. Not much around me has anything to do with me or my values, my priorities, my interests. Never mind what I would have talked about, if I’d been able to go to dinner with my friend last night. We would have riffed on abstract concepts for hours. But alas… alack… All I have to show for dinner last night is a dessicated, intellectually barren experience, where I’ve worn myself out interacting with people nothing like me at all, doing things that don’t interest me… and there’s always the chance I’ve insulted someone without intending to.

Ah, well.

I get to go home today. Back to my books, back to my routine, back to my regular eating and exercise schedule. Back to my house, my partner, my queerness, my nonbinary, noncompliant ways, and the life that I’ve structured exactly the way I want it. Back to my quiet, my peace, my steady cadence. Back to my ideas. Back to a place where I can actually think, instead of being rushed and pushed and cajoled and coerced into meeting someone else’s cookie-cutter social needs, on someone else’s time, according to someone else’s idea about how things should be done.

Well, I’m sure I’ll get some insight from this trip, on down the line, but for now, I’m just really relieved to be finishing up my stay here and going home this afternoon. I’m sure I’ll be back here, sometime in the not-so-distant future, but for now, I’m looking forward to getting my life back to how I want and need it to be.

The day is starting. Let the games begin. Again. For the time being.

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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“Old School” Autism Adjustment

school building in snow on film strip

I’ve been thinking a lot lately about how I structure my life. And I’ve been thinking about how I handle myself, regardless of what comes along.

Because I do. Of course, it falls down, here and there. Of course it does. I’m human. I have finite resources, and like a high-performance race car, I need to pull off the track, every so many revolutions, and get tuned up. I’m no different than a Formula-One race car, in that respect. High-performance vehicles, including my body and brain, need more specialized care on a more frequent basis.

That doesn’t make me disabled. It makes me high-performance with specific needs.

Interestingly, nobody’s calling F-1 race cars “disabled” because their tires need to be changed more frequently than your everyday family sedan.

Please.

And here’s where my New Year starts out a little early. I’ve got this new resolution to really “reframe” (much as I hate that word) the way I talk about Autism. Hmm… let me think of a much better word than “reframe” — okay, let’s use “redefine”. Because that’s essentially what I’m doing. The words I use add shape and texture to the concept of my Autism, and by using different words and different mindsets to talk about that central part of me, I can literally change the quality of my life and the thoughts/concepts that guide it.

If others “get it”, then great. If my example helps them to redefine their own experience (whether it’s Autistic or not) and create a more self-aware and self-directed way of life that’s got less pain and suffering, then great. But my redefinition isn’t for the sake of anyone else. It’s for my sake. I am Autistic, after all. 😉

One thing driving this shift is my experience of looking through my library of images I’ve used in blog posts over the past year or so. I’ve been actively blogging here for nearly two years. I started this blog back in June, 2008, then had to tend to other things, and I came back in February, 2016. Some days, it seems like a lot longer than two years, and other days, it seems a lot shorter.

I’m alexithymic like that.

Anyway, I noticed that so-so many of my images have really negative connotations for me. There’s a lot of suffering archived in my media library. And while searching in vain for some really uplifting images (or just some pragmatically strength-inspiring pics), I came up with nothing, time and time again.

sunflower

Oh, here and there, I found an image or two. But on the whole, things look pretty grim. I’d have to say the ratio of gloomy:gleeful is about 9.24:1.

So, that’s gotta change.

I’ve talked before about how we need more Autistic Joy, and I still believe that. But it’s not enough to mention it now and then in a blog post. It’s got to be the main theme in all my blog posts. And if not outright joy, then at least some discussion of how I’m managing my Autistic life — and doing it successfully.

Oddly, I feel as though I may be failing “the cause” as I write this. Because Autistic people are supposed to get support and resources for our difficulties. Yes, when appropriate, I absolutely believe that. If I am completely and totally unable to help myself, then I do need extra help.

The thing is, I’m rarely, if ever, completely and totally unable to help myself. I may have lost track of all the ways my system was being slowly eroded by circumstances beyond my control. I may have allowed myself become so run-down that I lost my normal capabilities. I may have gotten so wrapped up in what I was doing, I forgot to eat, drink, sleep, and empty my bladder, and that’s making my life a lot more “interesting” than I’d like it, as I gingerly wobble across the house to get to the bathroom.

But those things are on me. I may be Autistic, but I’ve helped to create those conditions. I didn’t properly manage my life — which I’m perfectly capable of doing. I didn’t take good care of myself — which I know I need to do, so what’s my excuse? I didn’t set a timer (which I know I sometimes need) to eat, drink, sleep, and keep track of my bladder’s state. Self-created suffering is not the sort of thing I can use to demand more services for my situation.

It may sound like I’m being too hard on myself, but I’m not. I was raised to know better, and to do better. And I was raised in a world where I was expected to take responsibility for myself, even for the times when I struggle. Especially for the times when I struggle. Because everyone is dealing with something pretty Big, and they don’t have extra time and attention to devote to my own self-created issues.

If I’m capable of discerning my difficulties (which I am, more than anyone else), and I’m able to learn from my experiences (which I can, and do, regularly), then it’s my responsibility to make provisions for my situation. Manage my issues. Restructure my life so that I’m not suffering, if it can at all be prevented. And make the damn’ effort to not get myself into taxing situations that I know, from experience, are going to make life worse for me — and everyone around me.

Yeah, I’m old school. That’s for certain. My approach isn’t for everyone, but it most certainly is for me. And as one contingent of Autistic folks focuses on the disability side of things, I’m focusing on the “Autistic ability” side of things — because our lives are different and shouldn’t be expected to be exactly the same. And because I’ve figured out how to live my life as an actually successful (and yes, I’m using the word in its true sense) Autistic adult. I was as a successful Autistic child, teen, and young adult. I just didn’t realize it, thank you alexithymia. Turns out, the very thing that makes it possible for me to function effectively in situations that freak other people out, actually hides that effectiveness from the rest of me. So, I’m a heck of a lot more successful and happy and content than I realize.

Damn… I need to write a whole post about that, sometime. Or maybe I already have… Anyway, that’s another idea for another day.

So, with the New Year just around the corner, it’s time to get some more positive pictures in my media library. And get some more pro-active, pro-Autism posts in my blog. Staying stuck in how horrible everything is… well, that doesn’t serve anyone. Least of all me.


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What a delightful week it’s been! Blissfully quiet

And I’m pretty wiped out. I’ve had most of the past week to just do the things I like to do, in the way I like to do them. Which means, a lot of sitting. And a lot of isolating. And a lot of reading and writing and researching and pulling out textbooks, thumbing through them and crying, “Ah-ha!” when I find the passage(s) I’m looking for.

I’ve been immersed in a certain mode of thought I don’t have the luxury for, in my regular everyday working life — where my co-workers are suburban parents who just want to make enough money to put their kids through school and/or climb high enough on the corporate ladder where they can vex more people than those who vex them.

It’s been so much fun, being away from that whole scene, that major drain of a scene. And while I do look forward to getting back to my routine, I don’t look forward to dealing with those people again. It’s been a real pleasure, not having to constantly come to terms with the mixture of sadness, pity, compassion, frustration, and intermittent admiration, that I cycle through each day.

But I have to say, I am pretty tired.

It takes a lot out of me, trying to catch up with myself and the kind of life I want to lead, when I have such limited opportunity. It kind of works against me. Except, it’s my choice, and I can do what I please. And in the end, I’ve got a lot of satisfaction out of the whole deal.

Tomorrow I head back into the jungle.

Wish me luck.

When non-verbal == strength, it’s time to be non-verbal

red and blue dots connected by meandering lines on a field of red and blue static
My process looks confusing to others, but I get where I’m going – in my own way

So, my Major Deadline has passed. It went off pretty much without a hitch.

Just in time for Thanksgiving. I’ve got some time off, next week, but I’ll probably check in on my project to see how it’s going, now that it’s “live”.

It’s been pretty brutal, overall. Really, really taxing. And it’s taken just about a year to get this “15-week” (Hahahahahaha!) project ready for prime-time.

Now it’s out there, and it’s time to step back, think through all the lessons of the past year, and figure out the next steps. Because this sh*t isn’t going to stop. I’ve got another phase of this project just around the corner in less than 2 months’ time. So, get a little rest, and get back into it.

One of the BIG lessons of this has been seeing just how non-verbal I am, when I am in problem-solving mode. Make no mistake, I’ve been mostly in problem-solving mode for the past year. So, I’ve been mostly visual-spatial. Which means I haven’t been thinking well in words — or the times when I’ve had to think in words (and talk), I’ve been at a disadvantage. And the talking has cut into my non-verbal problem-solving.

I’ve known I’m a visual / non-verbal thinker (this blog nothwithstanding) for many years. And I’ve known for just as long that having to switch my mode between words and pictures is a problem and makes both sides more difficult. But not until this past year (or two) have I really seen so clearly just how much of a problem this can be.

In my job, I have to communicate to people.

But communicating just doesn’t happen, when I’m in non-verbal mode. So, I don’t do my full job. And it works against me and the people I work with.

Huh. If I had more energy, I’d dig into this more, but the bottom line is, I need to figure out how to meet the requirements of verbalizing, even while I’m in heavy-duty non-verbal mode. Because the job requires it. And it’s not that I don’t like to do it, or that I can’t do it. It’s just that I need to find a better balance between doing it… and not.

Well, that’s a line of thought for another day. After I’ve caught up with myself and have the time and space to really think it through.

I’ve had a lot of important (for me) insights, over the past weeks, just haven’t had time to note them all down and expand on them. I’ll get to it. Just not yet.

Watch this space, though.

Watch this space.

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.

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.

A “Sample Sensory Diet” of Common Sense

a picture of a number of cherry picker lifts in a storage yard

Some years ago, I found this:

A Sample Sensory Diet

The following guidelines represent a kind of sensory diet for one particular child. Keep in mind that every child has a different regulatory and sensory profile, and that these activities are not appropriate or useful for every child. You should get guidance from an occupational therapist or other individual who is experienced with sensory integration.

In this particular example, the child would become disorganized on a regular basis. Although this has meant different things at different times, this child shows disorganization primarily by:

  • being extremely silly and unresponsive
  • laughing uncontrollably
  • losing control of his body–getting extremely limp and/or clumsy
  • becoming either hyper- or hypo-sensitive to pain and other physical stimuli
  • getting aggressive–pinching or spitting, usually in a taunting, almost maniacal way
  • humming and clicking while wandering around aimlessly

Engaging this child in sensory activities on a frequent, regular basis seemed to help him to remain engaged, focused, and in control more often. When this child does get disorganized, these activities help him to find himself again.

Great resources for sensory integration information:

Kranowitz, Carol Stock. The Out-of-Sync Child: Recognizing and Coping with Sensory Integration Dysfunction. 1998. New York: The Berkley Publishing Group.

Ayres, A. Jean, PhD. Sensory Integration and the Child. Western Psychological Services: Los Angeles, 1979.


At the critical times during the day, plan on activating the child with these activities.

NOTE: Spin the child at every activation phase. Spin him in the swing 10 complete revolutions each direction, with a 20-30 second pause in between. Spin firmly and quickly. Do not repeat.

Warning: For some children, spinning is not useful, and can be overstimulating and dangerous. Before engaging in any of these activities (and spinning in particular), please consult a professional who has a solid understanding of sensory integration principles.

Chase Games

  • Tag
  • Follow-the-Leader
  • Obstacle Courses
  • Red Light/Green Light
  • Running Races

Exercise Games

  • Simon Says
  • Obstacle Course
  • “If You’re Happy & You Know It”

Incorporate:

Jumping Jacks
Stretching
Situps and Pullups
Tumbling/Head Stands
Balance Beam
Standing on one leg
Wheelbarrow

Swinging/Bouncing

  • Inside swings
  • Trampoline
  • Hang-bar
  • Tire Swing
  • Outside swings
  • Outside trolley
  • Exercise ball

Squeezables

  • Nerf balls
  • Gak, floam, flubber, silly putty
  • Play catch with any ball

Incorporate those activities plus others listed in the box below into as many of your games as possible. Be sure to work in a sensory activity at least every half hour.

EVERY HALF HOUR AND ANYTIME

Other Sensory Stimulation

Everything on the other list plus:

  • Smelling Scents Game
  • Rubbing/Brushing (brush firmly and consistently–avoid stomach)
  • Rolling Up In Blanket
  • Crawling through a “caterpillar” (long tube of stretchy fabric)
  • Dragging/Sliding Around Room
  • Silly Walks (e.g., crab walk)
  • Ball and Bat
  • Imitating Songs
  • Hand Games
  • Stilts/Roller Skates
  • Jump Rope

CALMING ACTIVITIES

8:30AM Bath, Brushing, Deep Pressure

3:15PM Child’s choice (e.g., biking)

6:30PM Supper, Bath, Deep Pressure, Free Play, Stories, Bed

Now, a bunch of things come to mind, when I read this.

The first is, Why is this considered a “sensory diet” that needs to be specifically detailed to parents? I thought that’s just how kids were/are supposed to occupy themselves when they’re kids!

I mean, seriously – why is this a plan of action that is called out as something special, something artificial? Why is this something that is seen as out of the ordinary? When I was a kid, this is just what we did — we played plenty of “Chase Games” like tag, follow-the-leader, obstacle courses, red light/green light, and running races. And we played plenty of “Exercise Games” like Simon Says, creating and running through obstacle courses, and singing “If You’re Happy & You Know It”. And we didn’t need a trained expert to “instruct” us how to do it.

Am I the only one who thinks that this “professionalized” approach is a bit silly? For people who are too busy to tend to their children and are eager to plop them down in front of the television or the DVD player or the computer, it might be necessary to detail exactly why kids need to play games like this, but it’s a sad, sad commentary on modern American life, when parents and adults need to be explicitly told to create conditions in which their kids can play tag, follow-the-leader, and red light/green light.

I really think there’s something in kids that instinctively knows what they/we need, in order to mature and grow up strong. When I was a kid, we instinctively did jumping jacks, stretching, situps and pullups, tumbling/head stands, balance beam, standing on one leg, and wheelbarrow. We didn’t need “guidance from an occupational therapist or other individual who is experienced with sensory integration.” We just did it. We ran around and played. We raced each other and tested our physical limits and worked our tumbling and balancing into the course of our play. We skipped rope. We climbed, we jumped, we did all sorts of things that kids apparently don’t do anymore, unless they’re specifically ordered to do so by trained professionals or parents who have been coached by experts.

How did we get to this place? How did the domain of child’s play become the exclusive domain of qualified and certified professionals? I have no doubt that the work authors who describe in detail (for overwhelmed adult minds) the tangible benefits of kids just being kids has made a contribution to the developmental health and well-being of lots of challenged kids. But what the hell is up with parents, that they need to be explicitly told that their kids need to play at, physically and socially, in order to develop properly?

WTF?

The next thing that comes to mind is, Holy smokes, the top part really describes me to a “t” when I was a kid. I wonder if my parents knew/noticed any of this stuff.

It’s really interesting to think back about how I was when I was growing up — really hyper and hard to control, and sensitive on top of it. And when I look at the list of issues kids can have:

  • being extremely silly and unresponsive – CHECK
  • laughing uncontrollably – CHECK
  • losing control of his/her body–getting extremely limp and/or clumsy – CHECK
  • becoming either hyper- or hypo-sensitive to pain and other physical stimuli – CHECK
  • getting aggressive–pinching or spitting, usually in a taunting, almost maniacal way – CHECK
  • humming and clicking while wandering around aimlessly – ??? could very well be

All of this stuff just fits me so well, except for maybe the last one, which I don’t really recall. Not that it would have been unlike me. I was an “unusual” child, to say the least, and I probably would have considered wandering around aimlessly while humming to myself to be quite a useful and productive use of time – no joke.

When I look at the list of Sensory Processing Disorder symptoms over at http://www.sensory-processing-disorder.com/sensory-processing-disorder-checklist.html, I’m really struck by how well a lot of them fit me, and how well they fit my mother. Whoah. This puts Mom’s behavior in a whole new light.

The problem when I was growing up was that she was on the opposite end of the spectrum than I — she was hypo-sensitive and sensation-seeking (like the proverbial bull in a china shop, always loud and high-contact and rough and not very good at figuring out physical boundaries, etc., etc.), while I on the other hand was hyper-sensitive and I had really bad reactions to touch and being pushed and pulled and treated like some rag doll.

It’s so wild to think about this, now — it really puts things in perspective. And it makes me a lot less angry with her.

It puts my whole family into perspective, in fact. My siblings had issues. I had issues. We all had issues.

And my parents made sure we grew up in an environment where we had a “rich sensory diet”. But I’m not sure they were consciously aware of all this. I don’t think my mother really understood the nature and the impact of her behavior — she still doesn’t, from what I can tell. My dad did things, too, that tied in with “sensory richness”, like building a hanging bar for us kids to play on, and always encouraging (and pushing) me to test my physical balance limits, like with my skateboard.

Mom and Dad did appear to do things instinctively to address my issues, such as spinning me around and making sure I was always physically active and encouraging me to do lots of things that developed my balance and coordination. I was a dorky kid, with a lot of problems balancing, and I have distinct memories of my parents — especially my mother — going to great lengths to get me to participate in activities that would help me develop those. But I’m not sure they consciously chose or planned to do these things. It wasn’t like they had a formula for making sure we kids developed adequate proprioceptive and vestibular viability. It wasn’t like they consulted with experts about how best to address my sensory processing dysfunction.

At least, I don’t think so. It could be that they did talk to child psychologists and what-not, and they just hid their methods from me (which wasn’t hard to do, when I was an innocent and all-but-clueless kid). Mom did have a copy of “Dr. Spock” around, and she consulted it a lot, but so much of what my parents did, other parents in our area did for their kids, as well. It was just how things were done in the world I grew up in.

This part of my post dovetails nicely with the first part — that is, what is up with parents today, and why do they need to have these things explicitly told to them?

This really, really puzzles me. Is it because there has been so much emphasis put on “professionalization” in the past 50 years (since the USA rose to a position of global domination and the parallel veritable explosion of higher education and proliferation of specialists), that we as a society are invested in our experts? Is it because we as a society have put so many of our eggs in the basket of developing “professional expertise” that we’re now obligated to dip into the pool of professional knowledge, in order to do anything, anymore? Have we become so enamored of our “advancement” that we’ve made it all but impossible to live our lives? I smell the scent of another extended blog post, for another time… but the burning question with regard to this issue within the context of this post, is, are parents so dependent on professionals for guidance, that they are afraid to just parent? And are they so distanced from the varieties of life (sitting in their homogenized cubicles in their standards-driven office environments), that they fear even the slightest deviation from “normality”, as it’s defined by the qualified professionals of the day?

Seriously, when I look at the organizations dedicated to stamping out the “autism epidemic,” I’m struck by the corporate backgrounds of these individuals. How many of the folks sitting on the boards and doing the research have actually experienced what it’s like to be outside the acceptable range of “normal” behavior and human experience? Where’s the diversity? I wonder. The unfamiliar makes people afraid. Fear makes people do rash things. Fear makes people start and/or send money to organizations and initiatives that promise to relieve their fear.

I think one of the big reasons that my own parents could create situations where I was active and had the chance to develop coordination and balance, was that they themselves have sensory processing issues, themselves and they grew up in an environment where sensory issues and autistic spectrum behaviors and tendencies were/are actually a “regular” part of life.

Anybody who says that autism is a “new” epidemic has never spent time with my family, my extended network of relatives, and the insular communities of faith in the neck of the woods where I grew up. Most, if not all, of my relatives (including third cousins twice removed, whom I actually did grow up around), as well as most of my friends and acquaintances and people I went to church with, could easily be placed somewhere on the Autistic Spectrum. Where I grew up, all you have to do is go buy a quart of milk at the local convenience store, to bump into people who — in private or unguarded moments — exhibit plenty of signs of “autistic spectrum-ish” behavior. I’m serious about this. We’re built differently, where I grew up. If you head into that neck o’ the woods (and I do mean woods), I can all but guarantee any aspiring student of the autistic spectrum will find a plethora of examples of folks all along the autistic spectrum and/or with significant sensory processing issues, who are “recovered” or at least sufficiently rehabilitated to function fully as mature adults in the big, bad world. (I won’t say where that neck of the woods is, for the sake of privacy and retaining the human dignity of possible targets of “autistic diagnosis”.)

Does this mean that the land where I grew up is chock full of behaviorally challenged individuals who need special intervention, just to get along in the world? Hell no. It just means that this so-called “autistic epidemic” might, to some extent, be a fabrication of people who have become so distanced from the flow of natural, organic life, that

A) they don’t realize that their kids actually need to run around and play, in order to grow up capable and strong and well-adjusted to the social and the physical world,

B) they can’t make a move without consulting with a trained professional expert, and

C) that the phenomenon we call “autism” may, in some cases, actually be an extreme and underdeveloped expression of what may be perfectly normal part of life — a part of life that certain folks know how to integrate into their daily lives, over the course of their constantly evolving life experience.

Now, I can sense that I’m drifting off-track with this post. And I may be courting a great deal of controversy (even wrath from the “autism epidemic” proponents). I’m finding more tangents, and my associational mind is going wild, here, and I’m sure I’m not being very diplomatic, so I’ll get myself back on track and speak to these issues more, later on. For now, let’s return to the “Sensory Diet” web page.

Under the Activities, I find even more “regular and normal” parts of my childhood experience:

Swinging/Bouncing

  • Inside swings — we had a front porch swing that we kids often sat and swung on. It wasn’t “therapy”, it was fun, and it was what we did on summer nights.
  • Trampoline — our town had one at town hall for us kids to jump on during summer vacation. I think they may have removed it, due to safety concerns, but it was one of the best parts of summer, to head over to town hall and jump on the trampoline, while the Bee Gees were playing on the radio.
  • Hang-bar — my dad installed one in our back yard, and we played on it constantly. It was just something that we had. I don’t think a doctor or expert told him to put one in. It was just seen as something that was an essential part of growing up.
  • Tire Swing — my grandparents had one of these, and when all the cousins would gather, we would all just achingly pine for our chance to get on that swing. It was one of my favorite parts of visiting my grandparents, and it was a really vital element in me keeping my cool, during visits. My grandparents’ house out in the country was full of strange and strong smells that my city nose didn’t recognize. It was easy for me to get sensorily overwhelmed, so I spent a lot of time on the tire swing.
  • Outside swings — see above. Also, I and my siblings and my best friends, loved to swing on the playground swingsets, long past the time when we were supposed to “grow out of them”. We’d head over to the park and sit in the swings and twirl and spin and do all sorts of things that “normal” people would probably consider aberrant. But we were by ourselves, and we didn’t get crap from anyone, because no one was watching us. And if they had been, we would have told them to “shove off!” anyway.
  • Outside trolley — ?? what’s this?
  • Exercise ball — This is a newfangled thing, so I can’t speak to its place in my childhood development.

Squeezables like nerf balls and silly putty were a really important part of my childhood experience. No trip to the pool was complete without a nerf ball to throw, flinging water in all directions. And nerf footballs were the only acceptable kinds of footballs to have. I remember many a game of football, with all us kids squishing and pressing and worrying the nerf football, till it started to literally fall apart in our hands. We loved our nerf footballs to death, picking absentmindedly at the surface, squeezing and pressing and throwing and catching.

We really played catch with any ball we could find. Soft squishy balls, hard softballs, tennis balls, baseballs… Run-down was a particular favorite, as we could play it in limited space and race back and forth between the bases, coordinating our motions and actions.

And we didn’t need to have trained experts show us how to do it, or tell our parents to allow us to do all this.

We just did it ourselves. Our parents expected it. And they created space and opportunity for us to do it.

This wasn’t all considered a “special sensory diet” — it was just the process of growing up. It was The Way Things Were Done.

This being said, the last thing that comes to mind is, What is up with this web page, with the “scheduling” of these kinds of sensory diet activities? How contrived — and artificial — is that?

I mean, come on, people — You have seriously got to be kidding me, that you’d actually “work in a sensory activity at least every half hour” as though it’s some part of an official agenda. What’s wrong with just spontaneously allowing these things to happen? What’s wrong with just creating an environment where kids are allowed to do all this on their own, at their own pace, in their own ways? I firmly believe, from my own experience — and my own fully functional nature — that even the most impaired kids (if given half a chance) have the innate capacity to identify the activities and the pastimes that will strengthen their weak points.

They/we just have to be allowed to do so. Without being ridiculed. Without being pitied. Without being considered “abnormal” or “defective”. Without being bullied and tortured and treated like freaks.

Maybe I’m being overly negative-Aspie and insensitive to the needs of SPD/Autistic kids, but to me that having adults organize and participate in these sorts of activities with special needs kids seems a little dumb. Adults just don’t have the imaginative range or the endurance or the flexibility (in terms of time and attention) that kids have, and they’re (in my opinion) much too “temporally bound” — as in, too aware of time schedules and deadlines — to give kids the quality of attention and activity that they need.

Why not just turn off the television and unplug the DVD player and computer, and get the kids to play? Why not just “chase ’em outside” like my mom used to do all the time, and create places where they can indulge their every SPD-rehabilitory activity to their hearts’ content? Why not just gather a bunch of kids together and teach them to tolerate differences and recognize each others’ strengths? Teach them to let the kid who can’t hit the ball to save his life keep score and organize the league. Teach them to be patient and not tease and taunt just because one of the kids picks his nose or flaps his arms when he’s agitated.

Why not just let kids be kids — and teach them to let other kids be… other? Without sanction. Without punishment. Without shame and ridicule. That seems to be a more fitting solution, than contriving all these carefully scripted and scheduled and choreographed and adult-driven activities that are poor imitations of the “real thing.” And it might just train the emerging generation of NT folks to tolerate diversity and not be mean-spirited bastards to those of us whose worst, most heinous crime is making others nervous.

How about just not treating developing kids like we’re abnormal… simply because they’re still developing?

We are all works in progress, and the sooner we stop pathologizing diversity and learn to let each other just be (and give us ugly ducklings the time and the chance to become the swans we truly are), the better off the whole planet will be.

That’s just my opinion, but I don’t think I’m wrong.