#Autistic joy – it’s a thing. And we should have more of it.

agora theatre wall
Agora Theatre Wall – isn’t it lovely?

This morning, during my morning exercise bike ride, I read a piece by John Elder Robison about My Life With Asperger’s

Sex, Lies, and Autism Research – getting value for our money

How to get tangible benefit from the millions we spend on autism science

The US government is the world’s biggest funder of autism research.  For the past decade I have had the honor of advising various agencies and committees on how that money should be spent.  Sometimes I’ve been pleased at our government’s choices.  Other times I’ve been disappointed.  Every now and then I turn to reflect:  What have we gotten for our investment?

Autistic people and parents agree on this:  The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today.  Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.

You can read the full piece here. It’s worth it.

And of course it got me thinking… along similar lines to yesterday’s post, wherein I pondered the irregularity of autistic joy.

Returns on investment. Getting our money’s worth. Having something to show for our investments… What a world it would be, if all the money spent were going to opening up chances for good to flourish, rather than some “war on autism” dedicated to <begin sarcasm> hunting down and eradicating the dread disorder that “steals” perfectly healthy and happy children from their families and tearing apart everything their parents hope for and hold dear </end sarcasm>.

Now that we’re all triggered, let’s take a deep breath and step back from that hijacking of the collective consciousness by ve$ted intere$t$ and pause to actually recognize and laud the truth of Autistic joy.

If there’s one thing that seems to set Autistic people apart from non-autistics, it seems to be the capacity for joy. Honestly, looking at the neurotypical world, all I see is pain. Frustration. Anguish. Predators and prey. And the best that most non-autistics I know can hope for is just a temporary relief from their pain. Drinking. Drugs. Facebook. Yes, they have their friends and family, their careers and reputations. But even those joys seem so fraught with danger and conflict, there doesn’t seem to be much purity there at all. And the times that my non-autistic friends and associates are happiest, are when they’re numbing their pain with a stiff drink or distracting themselves from their pain and fear with some form of entertainment.

Truly, it’s such a dreary world they inhabit. Where’s the joy? Where’s the ecstasy? They don’t seem to have much capacity for it, and they treat my (and other Autistics’) capacity for unbridled joy like it’s a disorder. A condition that needs to be fixed.

How does that work, exactly? I just don’t get it. I would imagine it’s a little like being a really tall person during the 1700s, when people were considerably smaller than they are today.

The thing is, I don’t think non-autistic people are completely devoid of the ability to feel and experience ecstatic joy. I think they have as much capacity as we Autistics. They’re just not allowed to experience it by their milieu. They’re smacked down. Held back. Shamed and blamed and pressured into being certain ways because that’s “normal”. Huh. How ’bout that.

Meanwhile, it just holds them back. It cripples them, not only in their own lives, but also in how they relate to us.

It’s a little like the inexplicable conditioning of women to not really move that much in their lives. I’m noticing this more and more, these days, as I continue to move and be fairly limber and spry and strong, compared to my female peers. I take stairs two at a time. I lift 40-pound water bottles on a semi-regular basis. I rake my own lawn. I shovel refuse into my wheelbarrow and push it to the dump pile down the road. Even though I have issues with chronic pain and scoliosis, I get up and move around with pretty decent mobility.

Meanwhile, my female peers — friends and family — move a lot more slowly than I. Their joints are giving out on them, and they just don’t move as well or as freely as I do. In some cases, I realize it’s because they’ve been focused on being “good girls” for their entire lives, and good girls don’t jump up and run across the room. Good girls don’t take stairs two at a time. Good girls don’t stretch their backs and necks to get them to crack. They might go to yoga. Or take a pilates class. But they don’t really move freely in the course of their everyday lives.

And after decades of being demure, it’s taken a toll. They can’t just hop up and run across the room. They can’t dart out of danger, if something is flying towards them. And they run out of energy pretty quick, pumping themselves up with carbs and sugar and caffeine.

I’m not talking about disabled people who are dealing with physical limitations. I’m talking about healthy, non-disabled people who have actively limited themselves with their choices and behaviors. Because good girls don’t move quickly. Good girls aren’t physical. Good girls don’t take stairs two at a time. That’s not normal. And it’s certainly not free.

I have no idea why some people can’t deal with freedom. Or joy. Or ecstasy. But that’s not really my problem. My job is to make the most of my own freedom, my own joy, my own ecstasy. And to protect and shelter it in the face of all the people who covet it but refuse to allow themselves to experience it.

Autistic joy is a thing. Today, for me, it’s about getting back to my routine, which allows me to do so much more than I could if I had to re-design the schedule for my day, each morning.  I have a lot to get done, and my routine allows me to focus on the new and exciting things that interest me, even while I can consistently complete the basics that form the foundation of my life.

With my routine, I can get myself out of bed, wash my face, brush my teeth, and get myself downstairs with relative ease. With my routine, I can get my daily exercise, catch up on my online reading, have my breakfast, and get some writing done before I start my day-job work. With my routine — which other people might consider mind-numbingly consistent — my mind is freed up to do more interesting (and far more complex) things than figure out how to fix my breakfast. With my routine, I can get a whole lot of things done, that most people wouldn’t think are even remotely possible. And there’s a lot of joy to be had in the doing. Having four(+) projects going at the same time, and seeing them all coming to fruition in their own times and their own ways, is a rare treat that isn’t even on the radar of most people I know.

Autistic Routine — as much as it’s pathologized by the diagnostic establishment — is the very thing that makes it possible for me to function at higher-than-average levels.

And it’s something that brings me joy, which should be more than enough reason to depathologize it.

So, yeah. Rather than getting hung up on all the downsides of Autism (and don’t get me wrong — there are a lot of challenges that can make your life really miserable), maybe we need to focus more on the joy that seems to come part-and-parcel with  Autism.

Autistic Joy is a thing. Let’s have more of that!

Through the river locks of #autistic joy

Quebec river locks
I’m coming ’round to my desired routines again, getting back to some narrow interests that have drawn me in and held my keen interest for years at a time. I’m finding myself able to think again, after a months-long hiatus of all-consuming DO-DO-DO–GO-GO-GO. I’ve been so busy “upping my output” that I’d lost touch with the simple act of taking in.

I had all but forgotten about some of those vital interests — the books I’d bought to read (devour, really) and ingest and think on, long and deeply, got stashed in my office and I haven’t spent much time there at all for months… the papers I’d downloaded to take in and consider also ended up in piles in my office… the theories and philosophies that have lit up my life so brightly for so many years, faded into the background of my day-to-day rush to Get Things Done…

Yeah, I got busy. And necessarily so. All of it was important. All of it held my interest and taught me useful things.

But as with any all-consuming effort that flames up in a series of inner fireworks, there’s a price to be paid, and that price was the steady flame of joy from what’s held my interest in a steady, rapt embrace.

I think perhaps this is a distinctly autistic feature of mine. I tend to be so completely consumed by what I’m doing at the time, I lose sight of everything else. And then my best-laid plans to do such-and-such a thing in such-and-such a timeframe… well, that all flies out the window like a caged bird that’s realized the keeper left its door unhooked. At the same time, my “interim” interests (intellectual sprints in the midst of my conceptual marathon) tend not to last long. Maybe a few weeks, maybe a few months. And I can lose interest in them rapidly, so that the full roster of Productive Activities I’ve earmarked for doing… well, that just gets lost along the way, too.

So, I end up with a lot of things started, and not a lot finished in the intended timeframe. Ultimately, I do finish things. But it’s years after the original plan. One of my books took nearly 20 years to complete. While others took me maybe 6 months, tops. Other works have been under construction for a couple of years, and they still don’t feel like they’re ready to be done.

I guess I do need to let my imagination “off the lead” and let it run around wildly for a few weeks/months at a time. It re-invigorates me, when I’ve reached a point of overwhelmed ennui, and nothing I’ve been working on makes any logical sense anymore — not because it has no sense, but because I’ve pushed myself to the point of not being able to reason, to think, or to draw anything useful out of what I’m pondering.

It’s cyclical. It needs to be. And yes, it doesn’t conform to the usual timeframes of the neurotypical world. How do those people live that way, anyway? I don’t get it. It seems both forced and dessicated, as though there’s no room for anything human at all. Just a mechanization of our creative impulses.

I can say this (and complain bitterly about it), because I make my living as a Program Manager at one of the planet’s largest high-tech companies. I see (and have to live) this forced, artificial, mechanized way of doing things every moment of my professional life, and I don’t like it. I’d love to toss a wooden shoe in the whole works and grind the teeth off the gears. Stop the whole machine from working that way. But alas, ’tis not in the best interests of my ongoing employment to do that. I like to eat. I like having a roof over my head. I like being able to afford to live my life. So, I keep those gears turning.

It’s a master-class in Everything Not To Do, If You Want To Keep Your Spirit Alive.

Well, so it goes. Railing against the imperfections of the world is all very well and good, but it’s much more productive to counteract it.

And I guess that’s what I do, when I move at my own speed and meander through my personal projects. Like a boat moving between two bodies of water that are at different levels, I need to progress gradually through the “locks”, letting the waters flow in/out and lift (or lower) my proverbial vessel, as I move from one level to the next.

Maybe, just maybe, that gradual way is my own way reclaiming my own autistic identity and reinforcing my own “organic” process (much as I hate that expression). The daily grind really does show me how I do NOT want to conduct my own affairs. And while it does grind me down, and there’s a big part of me that wishes I could make a living doing what I love to do, rather than doing what others will pay me to do, because they’re under the impression that it “needs” to be done… I’m not holding my breath. I’m an inventor and a builder, not a marketer, and I’m not going to waste my time trying to force myself to work in a mode that doesn’t suit me.

So, the day job remains in place. Until I can make a living otherwise.

Well, the day awaits. I have a bunch of things I need to do, and I’ve got a social afternoon ahead of me. I’m looking forward to it. Hangin’ with another Autist. It’s always a pleasure and a relief.

Till Monday rolls around, and it’s back to the same old…

In the meantime, though, I’m good, just going along at my own pace, piecing things together as I go, and keeping my spirit alive and lively.

With joy.

All that joy.

Into the weekend

man walking on pathI’m working from home today. My first conference call is in 10 minutes, so I just “dash off” a quick post to get myself in the mood for the day.

I got a lot done, yesterday, actually. Finished three really daunting tasks, some of which have major political implications and may spark some in-fighting (which I hate). I just took care of it. Because it had to get done, and I was on deadline.

I’ll let the captains of industry duke it out. I did my part, sending out the emails and notifying people of stuff. And I’ll do some more today.

The weekend is looking promising. It’s not going to be easy, but it will go. Some good things. Some sad things. And errands. Always the errands.

An old friend of mine lost his wife to illness a few weeks ago, so there’s a memorial service tomorrow night, which I’m attending.

I took care of the biggest chores last weekend, so I won’t need to work on them this weekend. I will have time to write and read and relax and make some progress on some of my side projects.

I’ve found some good podcasts, and I can listen to them.

And rest. Nap. Catch up on my sleep. I’m a little behind.

But it’ll go. It will all go — who knows if it’ll happen according to plan, but it’ll go.

Dropping back – then stepping forward

road with yellow stripes and trees with snow along the sides
It’s been a while since I blogged here. There’s a good chance people have forgotten about me, or they figure I’ve moved on to other things.

Actually, I have been doing other things for the past few weeks. Good things. Challenging things. Draining things. Restoring things. I’ve been writing a lot, researching a lot, thinking a lot, which means I have to cut down on the amount of input from the outside world. That means less blogging, less getting on Twitter, because there is so-so much that is distracting (and distressing), and I can’t afford to be pulled in all those different directions.

I think something may be “up” with my parents. I haven’t heard from them in a number of weeks. My mother’s cards come on a regular basis, but my dad has stopped calling me every Saturday. That’s a change. I need to check in with them. He hasn’t been in good health, for the past year or so, and despite surgery that looked wildly successful, he’s still got additional issues — including diabetes, which will do a number on your brain function, if you don’t control your sugar.

I kind of dread it, actually. But I should call. I’ll find some time. I’ll make the time. It’s the right thing to do.

I’m not sure why, but the last couple of weeks have been pretty intense. Well, there was the big event a couple weeks ago, that had me leaving the state and “peopleing” with strangers and finding my way around an unfamiliar college campus (while I was nervous that my car would get ticketed or towed because I parked in the wrong spot without knowing it).

There was the doctor visit with my partner, who’s extremely anxious around doctors, and the new meds prescribed to her, which I needed to research (I found what I needed to avert some likely serious side effects).

And then there’s been the whole work thing, with the Big Project I’m on being generally doomed, from the top down, as managers battle for territory, and the underlings get the brunt of their poor thought process. If we were left to our own devices and didn’t get dragged into their territorial disputes, we’d have the whole thing sorted, by now.

horse racing jockeysBut no. They have to jockey for position. Racing for the front and pushing each other against the rail. It’s tiresome. I feel like a horse that’s been ridden hard and put up wet.

We all do. And I wonder how long it will take, till we just throw the “riders” who are whipping us to go faster.

Maybe never. People need their jobs. I’m tired of this. I’m tired of the whole thing. It’s futile. It’s pointless. And I’m traveling down to HQ in a couple of weeks to continue the pointlessness. I hate business travel. It throws me off. It steals precious time and energy away from me, and it puts me in the middle of throngs of strangers who will trample me, if given a choice. Heck, they do it by default.

Well… what-ever.  I’ll just make the best of it.

Actually, I’m doing better than making the best of it. I’ve given up caring. I don’t give a damn, one way or the other, how things turn out. Oh, sure, I want the thing to work perfectly, but it’s literally impossible for that to happen, so I’m encasing myself in a protective shell of divine indifference and just getting on with my life, regardless of what happens around me.

Seriously, I’m beyond caring. I’ll do my part. I’ll pitch in and participate. I’ll fulfill my duties and my role to the fullest extent possible. But I’m not attached to the outcome, one way or the other. I didn’t ask for this project to happen. I got shoved into it by default, basically forced to turn a sow’s ear into a silk purse, and I’m expected to make it all work to everyone else’s specifications, even though I advised against it from the start, “raised red flags”, documented the risks, and so forth. I did my part. Nobody listened. At least, nobody at the top.

Maybe this works out. Maybe it doesn’t. What. ever.

I frankly have no personal interest in the whole thing. I’m not invested in the outcome. I’m oblivious to whether or not things are to others’ liking. All I care about is if I’ve done my best under the circumstances. I’m just “doing my thing” to the best of my ability, playing my part as is required, and letting go of any outcomes. It’s out of my hands.

So the project is doomed? So what? Who cares? Certainly not I.

And it’s wonderful.

So, yeah, I’ve dropped back a bit from life… Pulled back into my own little autistic experience… To work on some projects I’ve got going, and finally make some progress. I’m quite pleased with one of them. It has real potential. And there are several others that look promising, as well. Sweet. And these are all things I can do, myself, while I go through the motions of my everyday day-job, making a living, collecting a paycheck, getting what I can out of the situation.

silk purseHere, have a silk purse.

I have extra, from all the proverbial “sow’s ears” I have lying around.

What if I just let that sh*t go…?

danger falling rocks sign

“If you want to hear God laugh,
announce your plans.”
– Said someone somewhere, sometime.

I’ve been a pretty reliable source of entertainment for God, for years, now. And while I’m sure He’s gotten plenty of good laughs from me (you’re welcome, God), I’m kind of tired of being laughed at.

Don’t get me wrong – I’m autistic, so I’m used to being laughed at. And if anybody has a right to do it, that would be God. (I’ll overlook the fact that I don’t actually believe in God – I’m taking artistic liberties here.) But now, after all those years of striving and hoping and planning and wishing and working… I realize that God laughing at me really shouldn’t bother me at all.

Truth be told, the point of all my undertakings hasn’t been in the neurotypical mold. It hasn’t been in anybody’s mold. And that’s the point. I’ve frustrated my family and colleagues and bosses and recruiters for years, with my laissez-faire approach to career and undertakings, my lackadaisical, shifting focus from one fascination to another, not to mention my (shrug) “whatever…” attitudes toward advancement and achievement and worldly success.

The world’s idea of success is fine for everyone else. But I’m just so tired of it. What a time-sink it is. What a heart-breaking waste of time it is for me. All the shiny baubles and trappings and evidence of world domination that brighten the day of the Masters of the Universe… they just leave me cold. All the goals, the intentions, the schemes… yeah, I’ve had them a-plenty. But what I’ve gotten out of my life has been so much more than all the plans and hopes and wishes that urged me along.

I got a life. I got experience. I’ve failed fantastically at many things, and I’ve done so-so at others. Sometimes, I’ve nailed it. Just “hit it” exactly right, and I managed to ride a wave of success and achievement for a number of years, till I moved on to the next thing. And in the end, I think my failures have served me better than any of my successes.

That fact means more to me, every single day.

It’s not the end result of my plans and activities that’s meant the most to me, or that’s stood me in the greatest stead. It’s been the process… the experience… the peripheral collateral of joy that’s come along with the endeavors. The ultimate goals of specific intentions was really just the context, the impetus for moving me along. Ambition is the delivery agent of experience. And unlike some who revere the final result of a completed project/plan/scheme, for me it’s actually all the other stuff in-between that matters. Experience — good, bad, or neutral — is what’s made my life what it is — something cool and awesome. And far more valuable than any flush bank account.

So, I’m letting certain sh*t go. As in, the “end game” ideas that have progressively dragged me down and made me increasingly uncomfortable and frustrated. I’m shifting my ambition away from specific “targets”, and towards the quality of my experiences. I’m tired of being pushed and pulled by internal drives and external impetus toward specific outcomes… and then never getting to enjoy myself along the way, because the specifics haven’t materialized exactly as I’ve dreamed them up… or as others expect them to.

I’m also letting go of looking back in frustration, looking back in criticism, viewing my past as a series of failures. Failures at what? Some idea I had in my head about “how things should be”? Or worse, some idea that some marketer out there concocted to sell me? Those rocks and blocks are like so many useless, pointless obstructions teetering on a cliff above me (as I wait for them to break loose). It’s time to cut them loose myself, and just live my life, driving around the blockages with a gunning motor and a squeal of brakes… doing what I do for the love of it, rather than for money or quantitative measures. Quality, not quantity, is what I seek.

And interestingly, when I’ve put the emphasis on quality… on my own experience… somehow money and other quantitative measures have showed up.

I’ve still got a lot of dreams, still have a lot of hopes and plans… but the important thing now is really the process I go through as I make my way along those paths. The “final” destination I’m shooting for is just the carrot enticing me along… keeping me motivated… keeping me interested. But it’s not The Reason I do things, anymore.

Something much more intriguing is filling my life, these days — What Happens In Between.

And I’m finding, when I let go of specific outcomes, they actually show up — not always exactly as I envisioned them, but present, nonetheless.

Until they give way to What Else Is Yet To Come.

Finding my “sea legs”

ship in a storm with lightning flashing around it

I have to say, the past few days have been some of the best I can remember having in a really long time. Plans didn’t work out. Schedules changed. Expectations weren’t met. I didn’t get nearly as much done as I’d intended. But somehow I’ve been staying chilled out and even-keeled.

My work situation stinks. It just irritates me so much. So, I’ve been putting my resume out there, in hopes of finding something new and different. It’s slow going, because the automated systems in place “see” my educational history, and they block me before I can even reach a live person.

Whatever. Where I am now isn’t where I want to be for the long term, but I’ll make the best of it, while I have to. I’m finding ways I can meet the basic requirements each day, but still keep my sanity intact. And that’s fine. I just can’t get too wrapped up in expecting more of it than is reasonable.

My home life is going better than it has in a long time. I’ve let go of a lot of my old persnickety obsessions (and yes, they are obsessions) with perfection… not fretting if Everything Isn’t At Peak Expression… letting a lot of things slide and going out of my way to not take stuff personally. I’m treating dynamics that used to drive me batshit as opportunities to learn and grow and strengthen my character.

Healthwise, I’m doing okay. I’ve got intermittent pain, vertigo, and a whole raft of sensory issues. But you know what? It’s all old news. I’ve been through the wringer over this sh*t so many times, over the past 40-some years, I can’t even worry about it, anymore. It should come as no surprise to me. In fact, if anything, it should (and often does) bore me. Lately, the internal dialogue about my intermittent disabilities plays out like this:

I’m in pain! No shit, Sherlock.

I’m hypersensitive! Well, duh! You’re friggin’ autistic.

I’m uncomfortable! This comes as a surprise to you? Exactly where have you been for the past 52 years, that this is noteworthy?

I really am losing patience with myself, over all my wailing and gnashing of teeth. Seriously, it solves nothing. Might make me feel a bit better (temporarily), but it doesn’t change anything. And it seems I’m subject to an odd supposition that anything could be perfect… ever.

Silly. What am I thinking?

In a way, I feel like I’ve been kidnapped by pirates and taken away on a stolen ship, crossing stormy seas both night and day. And all my life, I’ve been wishing I’d never been kidnapped… longing for dry land that stays stable… just wanting to get to the proverbial shore and get off the ship.

To no avail. After way too much bitching and moaning, I’m finally finding my sea legs, getting the hang of sailing the ocean blue (and black and gray, when the storms hit), and realizing that I actually like it on board this privateering vessel — and accepting that I fit better here, after all the years aboard, than I fit anywhere else. Even if I did get to “dry land” tomorrow, even if I did set foot on shore and not have the ground heaving under me, I’m no longer sure what I’d do with myself.

Because it’s not home.

Home is here. Out at sea. In my storms… and in the company of other misfits and cast-offs and very-very-different folks who “get” me, even when the “normal” world doesn’t.

It’s all very well and good to dream about the luxuries of a staid and settled and conforming life, but here on the high seas, in the midst of 10-foot waves… this is home.

What does it mean for me to be truly #autistic?

person jumping off a train in a foggy night
Leaving the “regular” world behind can be such a relief. Here I go… into the woods 🙂

I’ve been doing a lot of thinking about how my dreams and ambitions have really suffered and been stunted, because I’ve felt compelled to pursue them along neurotypical lines. I’ve somehow believed that if I followed “the rules” — of engagement, of customary behavior, of social interactions, of the right job or locale — that things would come together for me, and I would be able to follow my dreams as naturally as everyone else outside the autism spectrum follows theirs.

I thought I could go to college, and everything would be fine. I thought I could get a regular job and things would sort themselves out. I believed that if I moved into a certain neighborhood in a certain town, that would confer certain advantages upon me. I was convinced that if I just did a great impression of others, I could connect with them and find a sense of belonging. My family (bless their Aspie hearts) raised me with a strict set of guidelines that were supposedly guaranteed to provide me with a sense of community and connectedness. If you live in their world and do precisely as you’re told, it works. I’ve seen it work for countless people I grew up with, including my family.

Except… I don’t live there, anymore. I never wanted to live there, in the first place. Their Aspie-ness is diametrically opposed to my own rendition. What is life for them, is death for me. We may all be on the spectrum, but I don’t inhabit their quadrant. And the things that bring me to life, really dampen theirs. So, I’ve had to move on.

But I’ve still carried this Aspie-fied devotion to figuring out HowThingsWork and then following that set of specifications to a “T”, in hopes of achieving the expected results in the neurotypical world I now frequent. It hasn’t worked nearly as well for me, as it has for others. In short, I’ve often lost sight of my autistic nature, and that’s limited me. It hasn’t provided me the kind of options and opportunities that non-autistic others have found. What works in one situation with a select group of people, doesn’t necessarily work for me.

Yes, I’ve overlooked myself. I’ve ignored my own individual ways and needs. I’ve discounted my own individual inclinations. And I haven’t made the most of my own individual proclivities. And yes, I’ve neglected developing my own individual skills and talents, which are nowhere near the radar of the NT world.

There’s a whole lot of me that isn’t acknowledged by the neurotypical world, including:

  • Extreme Empathy — which is so intense that it causes me to co-experience the full range of emotions of everyone around me, including (especially) the negative ones. That impassive presentation everyone sees… it’s a direct response to the emotional upheaval of my milieu. Somebody has to keep calm in the chaos and the storm. I can’t rely on anyone else to do it, so that role falls to me.
  • Profound Productivity — which lets me accomplish more in a weekend than most “regular” people do in a month. Or a year. I can’t even tell most people all the things I do with myself on a regular basis, because they become alarmed at how much I’m “taking on”. It’s not “taking” anything on. It’s simply letting myself be what and how and who I am. I flow. My work flows. The words flow. That’s how I roll.
  • Experience like they wouldn’t believe. Seriously, nobody outside the autism spectrum is gonna have a clue just how much experience I’ve accumulated over the years… what kind of experience I’ve had… what I’ve survived… what I’ve created… what I’ve incorporated into my world view. I’m not alone in that. Countless other autistics have done as much as me — and more. And what we assimilate isn’t this 2-dimensional mind-driven experience of the neurotypical world. It’s a full-spectrum, body-mind-heart-spirit inundation in the world of What It Means To Be Human. We have capacity for it. We take it in. Some of us can handle it, others can’t. But for autistic people like me, it’s inescapable.
  • Resilience, resilience, resilience. To the point where I can sufficiently “self-heal” from a devastating, debilitating meltdown to be reasonably functional in a matter of days. Yeah, I still feel the effects of it, and I’m still shaky for weeks after, but it doesn’t stop me from living my life. No how, no way. I’ve been roughed up and trampled and put through the proverbial wringer for 52 years, now, and it’s taught me a thing or two about how to take care of myself. If I hadn’t figured that out, I wouldn’t still be here. You’re reading this, so I’m still here (by god). And I will continue to be here for the long term.
  • Pain tolerance / indifference of many kinds. “Life is pain! Get used to it!” said Geena Davis’s character in the movie “Long Kiss Goodnight”. And it’s true. My life is chock-full of pain… not that it’s going to stop me. Pain schmain. Life isn’t waiting for me to feel better. It’s not going to pause for me to climb on its metaphorical merry-go-round. Physical pain. Emotional pain. Spiritual pain. Mental pain. Just living in the NT-centric world is an exercise in extreme discomfort. It can be debilitating. It’s definitely disabling. And at the same time that I’ve learned how to handle the pain, I’ve learned how to negotiate my way out of it…. to create a separate space for myself, where I can simply be. See the next point:
  • Independence of mind, spirit, body. I’m on my own — and as an autistic adult, that’s precisely how I like it. Autism is Self-ism. I know there are people out there who would like to help me. They offer. One of them offered just yesterday. But honestly, it’s pretty stressful trying to communicate with them… to express my needs in ways that they can actually understand and act on. Ultimately, it becomes more frustrating than anything else. Managing others is just one more thing I have to do. And I don’t enjoy it. I’d much rather handle things on my own, thank you very much.

To the non-autistics in my current world, those skills / traits / qualities / talents don’t even exist. According to them, they can’t. Because they don’t conform to their way of experiencing things. By allistic standards, they’re often considered pathological.  And that attitude gets a little tiring. Because nothing could be farther from the truth. Seriously. Nothing.

 

Thank God I’m autistic. Praise be.

Because all the things that the neurotypical world considers liabilities are extreme strengths with me. And my sh*tty experiences with non-autistic folks have taught me loads about how to just be true to myself. It’s been a master class in just walking away from a losing proposition and creating a separate reality for myself. I’ve always done that. I always will. So long as there are people who A) don’t understand me and B) feel the need to punish me for not being transparent / energetically available to them, I’ll keep my own interior space well-organized, clean, tidy, and extremely well-appointed. Like so:

  • I bought myself a new bookcase last month. This month I’m rearranging my study, so I have a proper retreat that suits me ideally.
  • I’m not driving in to the office today. I need the extra hour I’ll save by not doing that, to take care of myself and tend to my own interests. I also need a break from their needy dramas.
  • I’m getting some extra rest today, along with getting a massage this evening.
  • I’m cooking my favorite meal, tonight, letting it stew in its savory goodness that feeds my soul as much as my body.
  • I’m spending more time working on my book about an extremely autistic hyper-sensory day.
  • I’m dropping some of my near-future plans, because they would demand more time, energy, and money than I’m prepared to spend… and the payoff wouldn’t necessarily justify the expenses.
  • I’m widening my inner world, and relishing the pace and the flow that is mine, and mine alone.

All these things are mine. Truly mine. There’s much more, but I’m bumping up against my personal blog post limit, and I need to move on to other things. To be truly autistic, in my mind, is to be truly myself, to relish the strengths I have, the abilities I possess, and to make the most of every . danged . thing . that makes me the person I am. The autist I am. The supreme exemplar of me-ness that I can (and should) be.

In the face of a world that attacks what it doesn’t understand and punishes those who step outside their norms, I have a choice. I don’t have to conform. No way, no how. I can step away. I can create my own space. I can follow my own dreams, cultivate my own skills and abilities in ways that no neurotypical institution can recognize, let alone serve.

I can be true to myself, no matter what the rest of the world thinks or does.

That’s my right. Frankly, it’s my obligation. To do less would be such a waste.

Reblogging from Sam Craft: “Aspie” Rant: Integrity within Autistic Groups and Networks


This is an awesome post!

The original start of the title was Master Mind Fu** . . . Which still works.

I abide by the philosophy of take what you need and leave the rest behind. I was taught manners and live by the golden rule of treat others how I wish to be treated. I take pride in my ability to steadfastly stand the high ground. Never have I used my influences to discount another person’s actions or works: regardless of the temptation. Never have I called out an agency or organization in a public blog post. Never have I chosen sides in the eyes of many. Some might see my acts as weakness. As people pleasing. As avoiding conflict. That’s fine. I truthfully don’t care. I know myself. And that is what matters. But I challenge anyone to live like I do for a year. To not lower yourself. To not turn one wrong into two.

It takes little to no effort to act based on a reaction. That’s how we live each second.

It takes huge reserves of strength to stop from reacting in extremes, when we believe we’ve been wronged. It takes character and self-control not to buy into gossip and not follow suit in action, with someone who is degrading and belittling you. How good it feels to shout: Fuck YOU!

Read the rest of this terrific post at: “Aspie” Rant: Integrity within Autistic Groups and Networks

Haven’t got time for the pain

crane surrounded by cement construction blocks
I can pick from any experience I want to have. I’ve got things to do. I choose to experience strength and capability and accomplishment.

I’m in a fair amount of general discomfort this morning. If I move just right/wrong, I’m in pain. Autumn cleanup time is here, and I’ve also had a very busy bunch of weeks, which has put me off my schedule and pushed me more. So, yeah. Pain.

In other ways, I’m feeling a bit of pain, as well. Emotionally, psychologically, socially, my life is pretty painful. And it’s gotten to me, over the past weeks. Autumn is often a hard season for me, because so many things are dying. Also, people die. And things change. And the holidays are coming up, which means even more pain.

What to do?

There’s no way I can deny the pain that exists. But I’ve decided that that isn’t going to be my main point of focus. As a matter of fact, I’ve developed a formidable ability to hyperfocus on things of my choosing — and that hyperfocus blocks everything else out.

Including the pain.

So, that’s my choice. That’s my chosen direction. To hyperfocus on things that interest me, things that fascinate me, things that really give me joy and motivation, rather than getting stuck in the pain.

The pain will always be there. I’m not discounting it, not devaluing it. I just can’t let it wreck my life, when I have a perfectly good capability at hand, which allows me to keep functional, despite the pain.

A friend of mine insists that people need to accept and come to terms with their pain, in order to be healthy and happy. I have to understand and make peace with the ways I’m disabled, to fully honor my humanity. I agree. And I have come to terms with my pain. I know my intermittent, invisible disability all too well. I’ve been on close working terms with it all, my entire life. I’m just not a one-dimensional person who only experiences pain and disability, and makes that the center of their life.

I do not want pain to define me.

I do not want disability to define me.

I do not want to center my life around a narrative of less-than status and capabilities.

I’m just not going there.

Because I don’t need to.

I’ll never tell another person how they should relate to their pain and disability. That’s their business. That’s their path.

For me, I can’t do it.  I need to be fully involved in the world I live in, and that means putting the emphasis on my strengths rather than my weakness. That means strengthening the places where I’m strong, not dwelling on the places where I’m weak. I know about the weak places. They remind me, every single day.

But I can’t live in a world where they’re the only thing that matters.

I feel like crap today. My balance is off. My stomach is churning. I’m lightheaded, and I feel like I’m going to fall over, if I stop moving.

So, I keep moving. Ironically, the more I’m in motion, the better my vestibular sense is. Thus, I’m keeping in motion. Till I’m not. Then I sit and hang onto something, so I don’t fall over and get hurt. Then I gather myself and get back into it.

That’s what works for me. Nobody is obligated to agree with me or try to match me or tell me my approach is good or bad. Everybody finds their own way.

For now — and the foreseeable future — my choice is to recognize what’s wrong, but leave that in the background.

My disadvantage is … different

trees down on a road after a storm
I may be temporarily blocked, but I can still climb over obstacles and go on my way

Austin Shinn has another nice post about The Problem of Privilege. And I wanted to chime in, as well.

I’ve been thinking about this a lot – especially lately, in light of my complexifying relationship to autism. Do I call myself “disabled”? Do I accept it as a condition that limits me? Why am I so reluctant to just adjust to that, and integrate that as part of my experience and identity? I’m deeply ambivalent.

I think part of it has to do with how I’m not permanently disabled by autism. My Aspie life is more akin to running a marathon on a bad day, and a 10K minimum on a good day. It makes things more challenging for me. It saps my energy. And many times I feel like I’m wobbling around after a mile-long sprint up a very steep hill. But it passes. I do have enduring executive function issues. But I know how to fix them. I’m working on them — as well as the rest of my life.

I guess I feel like calling myself “disabled” does a disservice to folks who truly are struggling with many, many aspects of their lives on a regular basis. I know I’m not supposed to compare myself to others, but when I do, I come out looking not at all disabled. I mean, seriously, if I just take good care of myself and get enough sleep and eat right and keep exercising, use my supports, and learn as I go, I can have a great life. I in fact do have a great life.

That’s not to say that I don’t have issues which are temporarily disabling. I have huge problems with communication, at times, and meltdowns (while rare, nowadays) are a force I need to reckon with. I don’t get jokes. I have trouble figuring out when to talk on the phone. I hate the phone, period. And some days, the best I can do is just muddle through… or go back to bed and rest till I’m functional again. I am at increased risk of exploitation, because I can be so trusting and naive and mis-read social cues. I’m sure I have over-paid for just about everything I’ve ever bought, because the thought of negotiating never occurs to me in the moment. I’ve really had a terrible time, in the past, and I’ve had to work through a whopping case of PTSD as a result of the “excitement” and “adventures” of my youth.

Autism for me can be disabling at times. It has brought me up short many, many times. But am I disabled? I wouldn’t say that — in fairness to people who truly are.

I’m one of the few people I know who actually understates their difficulties. Most people I know have an “enhanced” view of their own struggles — even the folks who appear to have the most advantage, the most skills, the most money, of the population.  And it makes me wonder about the nature of our difficulties, and how we see ourselves as advantaged, disadvantaged, privileged, oppressed. I can’t speak for anyone who’s not in my demographic … so that limits how much I can responsibly say. But I’ll say what I can, because I think it’s important to consider — especially when we talk about privilege, disability, and the assumptions we make about How The World Is.

There’s all kinds of talk going on about white privilege these days, which is refreshing to me. On the other hand, I know a lot of white folks who absolutely bristle at the idea that they are any more privileged than others. The very suggestion really offends them. Even though it seems quite obvious to me, they take deep (and sometimes incensed) exception to the very idea that they have an advantage in life.

After all, they have difficulties. Their lives are not a cakewalk. They really struggle with certain things, and I don’t doubt they experience a great deal of pain as a result. I think what obscures our vision, sometimes, is that our difficulties may make it seem as though we’re not favored or advantaged (privileged) in the ways we most long for. We wish we could get special dispensation from the world, but things are tough all around, and we don’t see any evidence of that being the case.

So, we can think of ourselves as struggling in significant ways without a safety net, when in fact we do have a lot of privilege to fall back on. In my case, I’m a queer woman who’s been intermittently disabled over the years, working hard to make ends meet without a college degree to back me up. I’ve been broke, I’ve been well-off. Now I’m just barely above the “broke”line again. So, that’s not always easy. It makes me vulnerable. But my vulnerability is very, very different from others’.

Case in point: I was technically homeless in the winter of 1990. I walked out of a bad relationship with a duffel bag of clothes and the friendship of one person I could rely on. I was walking around the snowy streets of a major city (in a fairly drug-infested neighborhood), looking for a doorway to sleep in, in case my one contact couldn’t help me. I got lucky. They were home, so I didn’t have to spend the night in a doorway. I was officially homeless for a few weeks, while I looked for my own place. Had that one friend kicked me out, I would have been looking for another doorway.

The thing is, my homelessness was very, very different from that of a Black woman whom I and some friends helped to a shelter, where she was going with her three young daughters. She was apparently leaving a bad situation at home, as well — and it seemed to me that she’d hung in there as long as she could, for the sake of her kids. No, she did not want to talk about it. At all. It seemed clear that she had to go to a shelter, because of her situation. She couldn’t just take her little girls with her out onto the street. God only knows what became of her family. I, on the other hand, was able to pick up and leave a bad situation, just a month or two later, with a sense of elation and hope, not dread and desperation.

My situation was a passing inconvenience, and I knew that because I was a young white, middle-class woman who nobody guessed was gay, I could expect special consideration from others — especially from white men middle-class men who may have seen me as a potential partner. Not that I was taking advantage of that, but I was always so very aware that my homelessness and my difficulties were temporary hardships, at best, which others (white others) would jump at helping me solve. I got my divorce for free, because I worked at a law firm. I got a few pieces of furniture for very cheap, because someone at work told me about a going-out-of-business sale that was happening elsewhere in the office building. I could fall back on an informal network of white folks who looked out for each other (especially attractive young white women), and get the support I needed. I used that network to find a room for rent in a nice house in a safe (white) neighborhood. And I could walk around late at night without too much concern, because young white women especially were protected in that area by men and elderly women who kept a watchful eye.

This is why I am reluctant to call myself disabled or disadvantaged — because beneath the surface, there are forces which look out for “their own” and mitigate the impact. And those forces tend to favor people who look like me. That’s something that precious, precious few white folks are aware of. It’s not that we all have it easy and cushy and whatnot — there is just a whole lot more that we can take for granted… and often never suspect that others can’t.

I can also take for granted that, even if I’m wearing very thin and am having trouble balancing, tolerating light and sound and touch, can’t make myself clear (or can’t even talk at the moment), and I can’t understand what anyone is saying to me… if I just take care of myself, rest up, and use my tools, I can restore my functionality to acceptable levels. I am not permanently knocked out of the perpetual competition that can be life. I just usually feel like I’ve just run a 10K; I’m wobbly, sore, weary, and I don’t have a ton of energy to spare on fruitless pursuits.

My disadvantage is far more of a difference, than it is for many, many people. And while my situation may be intermittently disabling, the last thing I want to do, is compromise their position because I’m showing up calling myself “disabled“, when I can clearly take so much for granted, than they ever could.