I’m dictating this as I drive in my car, on my way to buy supper that I have to cook at 7:03 PM.
I stayed in bed too long after my afternoon nap between 4:15 and 6 o’clock, because frankly lying in bed under heavy warm covers, reading through Twitter, finding what’s there, discovering which voices are saying what about their lives, is about the most pleasurable thing in my life, these days.
Don’t get me wrong, there are plenty – and I say plenty – of enjoyable experiences in my day. My life is never without them. But lying in bed, idling away, my mind afire with ideas from people who think on purpose, in a warm, weighted space is about the closest thing to bliss I can imagine, these days.
And reading the words of others, I think about my own voice. I think about my people. I think about all the Autistics I know and have known, and I think about what we bring to the world. Everybody knows what we bring, but very few people know that we’re the ones who bring it. And they certainly don’t know how we do it or why we do it. There’s no point in trying to explain. They think they have this Autism business all figured out. Some assholes with influence and power have decided it for society at large, and who are any of us to question that?
And I think about this writing. “Blogging” they call it. Makes it sound so simple. Makes it sounds so trite. An exercising in ego. Just a few words barfed out on the screen, in the hope that anybody’s listening… regardless of whether anybody cares. Ego-casting. Vanity. That’s how it’s often been seen, and sometimes we earn that reputation.
But still… it seems unfair.
The blogging medium has been mine for almost as long as it’s existed. I knew, right away, how powerful it could be. I’ve turned friends on to the practice, and some of them have become extremely successful at it, gaining followers and fans, professional connections and book contracts and staff positions as writers with publishers like Conde Nast. Pretty sweet. It’s way more than I’ve ever been able to accomplish, but I like to think my input made a difference.
Most of the time, that’s about the best I can ask for, anyway.
As for me, I just don’t have the energy to do much more than I already do. I don’t have a working partner to support me as I pursue my dreams. I don’t have a life that lets me spend hours and hours on refining my craft. And I certainly don’t have hours and hours to spend reading the words of others, as much as I’d like to. People put down the short-form reading and writing that abounds these days, but it seems to me that some of us can’t afford anything other than short-form.
We don’t have the time, we don’t have the money that makes that sort of leisure possible. You know — the stuff the people used to just take for granted – cozying up with a long book on grey, rainy day, sinking into it for hours at a time, becoming one with the material, being one with the story, feeling as though the author has crept into your cells and reconfigured them from the inside out. Who has the luxury of that, these days?
If you’re not chronically ill and trying to hold down a full-time job while you support your disabled, dependent spouse and keep your house in order, yeah, I suppose you would. If you don’t end up exhausting yourself jumping the horns of the 9-to-5 bulls in the Minoan circus ring of modern day society, yeah I suppose you might. If you don’t completely destroy any semblance of functionality in the course of just getting by on neurotypical terms, day in and day out, yeah I can see how that would be possible.
But me? Nope. That’s not the world I live in. And that’s not what’s possible.
So, I blog. I read blogs. I follow links on Twitter and I see what’s there, preferably something that’s a little bit longer than a 20 minute read, but not too much longer, because I have stuff to do. And I have to get it done, because nobody else is going to do it for me. I really don’t feel like dying.
It’s really easy to die when you’re Autistic. It’s really easy to just lose it. I lose it regularly. I usually can get it back, but it comes at a cost. It takes hours, days, weeks, sometimes months to get it back. Yeah, I can totally right myself again. But not like other people think I can. And that like I wish I could.
It’s taken me, what — 35 years? — to figure it out. I’ll say 35 because it sounds nice and it digits out to eight, which is the signifier of eternity for me, which is what pretty much everything feels like to be, half the time. Eternity. Infinity. Endless possibilities, with no end in sight… fortunately… unfortunately.
And as I pull into the supermarket parking lot, I’m happy. Because it only took me 13 minutes to get here, there was no traffic, the light rain is keeping people off the roads but not making my life that much more difficult to navigate, and I know exactly when I’m getting when I walk in the grocery store. I wish to God I had the time and the energy to write more.
I’ve been thinking a lot about how I’ve lived my life, thus far. My birthday is coming up in less than a month, so my thoughts turn to retrospectives on the past year, as well as my life. I’ve only been around for ~53 years (compared to the 100+ years my elder relatives usually live to), so relatively speaking, I feel like I’m just getting started.
I know, I know, Autistic people are supposed to die something like 16 years before their neurotypical peers, and I’m sure many do. But all the Autistic folks I’ve been related to and have known, have all lived extraordinarily long lives, and they’ve been active and engaged in the world until the last few years.
So, I’m planning on being around for at least another 53 years — probably longer, since I’m in better shape than most of my peers, and I live my life intentionally, with future strength and stability in mind.
Anyway, I’ve been thinking a lot about the choices I’ve made in life, and how I haven’t really achieved everything I hoped to, over the course of the years. I’ve had so many dreams, so many plans, so many good intentions, and they all came to nothing. Because I couldn’t sustain the level of effort required to make it happen. I ran out of metaphorical steam. I got worn out. I worked to excess, then I crashed, and I never fully recovered. Basically, my life reads like one failed experiment after another.
And yet… I’m still here. And thinking about suicide and death and mental health, these days, I realize just how much of my life has been structured around keeping myself alive and mentally healthy, as everything around me has seemingly conspired to do the opposite.
I live in a profoundly hostile environment, full of social land mines and ample opportunities for faux pas that carry a heavy social toll. I’m active in my world, but I’m not at all comfortable in it. And while I do contribute, and there are a lot of people who really love and care for me, if I could leave it tomorrow for a destination that suits me and who/how I am more comfortably and healthily, I would — without a second thought.
But I can’t leave. The supports I’ve got, which I’ve worked so hard to put into place, are just now starting to “bear fruit”, as it were. After years of really scary precarious living, I’m finally in a place of stability that I can build on. And I have a household to support, including a disabled partner, so I’m not going to ditch my job anytime soon, unless something equal or better comes along.
That being said, I realize it’s been this way for my entire adult life. I’ve made my choices, and I’ve situated myself in life in the most economically advantaged position I can get, at a great cost to my mental and physical health. So, I need to go to extra lengths to keep myself viable.
That means… books! That means… taking the whole weekend off and decompressing… writing, reading, researching. That means, surrounding myself with stuff that brings me pleasure, whether it’s artwork I’ve made or pictures I’ve taken or art and photos I’ve bought from other independent artists. My home is full of many, many relatively inexpensive things that I love, which I (and my partner) just happened upon in our travels. A little figurine that cost $2. A Chinese hand fan that was given to us by friends whose wedding we DJ’ed. A giclee of a painting of a scene not far from my childhood home, by an Autistic woman I know. Pottery I threw many years ago, which I still love.
And my research… My special interests have varied and been in flux, over the past 10 years, but I still have the books. And when I dig into them again, I realize just how much they have helped me, over the years. All that reading, all that journaling, all those notes… they may never come to anything in the big, wide world, but they’ve kept me sane. They’ve kept me healthy. They’ve given me the outlet and the self-expression I needed, away from the pressures of professional performance.
And that’s a beautiful thing.
So, as my birthday approaches, and I start to slip into regret over all the things I never managed to accomplish, I have to remember — I’ve been very, veryactive in the field(s) of my choice over the years, and I’ve made some pretty amazing contributions to those fields within the sphere of my own personal life. It’s kept me alive, and it’s created something beautiful in my life — as well as indirectly in the lives of others who I’ve helped because my intense “special interests” made it possible for me to function.
That should count for something, to me. And it does. Just because nobody else knows about it, doesn’t mean it didn’t happen.
If a tree falls in the forest, and I’m the only one who hears it, yes… it does make a sound.
For the record, I’m not sure where this blog post is going to go, so if you get triggered by talk about Autism and suicide, it’s probably best not to read this. There are so many other really great things written on the blogosphere. I encourage you to seek them out instead of losing time here.
So, Autism and suicide. Apparently it got a lot of attention at the latest INSAR conference in Rotterdam, last week. And a lot of people on Twitter have been talking about it, since.
I have mixed feelings about suicide. I’ve dealt with suicidal ideation since I was a teenager. I can’t recall having that issue when I was younger — I think I was way too overloaded all the time to spare much thought about anything being different for me (i.e., not having to endure a miserable life). Then again, as challenging as my childhood was, there were ample opportunities for me to decompress and experience the ecstasy of special interests — and, well, just be and autistic little kid.
My mother actually loves to talk about what a little scientist I was, when I was younger. She thinks it’s hilarious and fascinating (not pathological) that I dismantled “girl toys” that were given to me, to see how they worked and use them for different uses, rather than playing with them as they were originally designed. All the stuff that would have qualified me for a DSM-V autism diagnosis and pathologized me within an inch of my life… well, those were all just quirks I had. They were the things that made me… me. And both my parents really loved and enjoyed that.
Of course, home was one thing. School was another. I was bullied intensely all during 5th and 7th grades, and I really struggled in many ways. But I ever thought about ending it all. When I got into high school, that changed. And I have to say, looking back on my four years there, I did engage in self-injury… but in the form of cross-country running. I ran myself ragged. Wore myself down to a rail, with my intense workouts. But I was fit, and I was winning, so it didn’t stand out at all.
I also started drinking in high school, and that took the edge off my intense discomfort. But it took me down some very dark roads, and when I re-emerged from my drunken haze(s), things were even worse than when I’d picked up a drink the night (or afternoon or morning) before. Drinking, ironically, may have saved my life at the start, because it helped me take the edge off the intense discomfort and mis-match between what I wanted for myself and what the world was imposing. Even if it was temporary, even if it did screw me up, it was still a pressure valve I could use at will. But it became a case of diminishing returns, and drinking in fact pushed me towards killing myself a number of times, until I quit for good, 29 years ago.
Thoughts of ending it all (let’s call it “SI” for “Suicidal Ideation”, a term I hate, but which serves its purpose) started in earnest when I was drinking, now that I think about it. I was so, so miserable. So queer. So autistic. So confused. So set-upon by everything. People expected a tremendous amount from me — and they weren’t wrong to do so. But they never provided me the kind of conditions I needed to truly excel. They just expected me, like some automaton, to produce excellence on a regular basis. They expected religion to meet my spiritual needs. They expected conformity to provide all I could ask for. They expected me to crank out superior “results”, time after time after time, with no break, no respite. And I expected that of myself, as well.
Because that’s what was done. That’s how things worked. And if I couldn’t do that, then I was clearly broken.
I spent a lot of time believing I was broken. Even before high school and college… back to the early days of not “getting it right”. Broken. I was broken.
And as adulthood encroached, with its requirements and expectations, and practically nothing on the horizon that appealed to queer little, autistic little, decided non-feminine little me… what was the point of going on? Seriously. What was the fucking point?
The closest I ever came to killing myself was at the end of my drinking, when I was scoping out the best place to end it all. I was working at a business 5 minutes from my home (for a sexual predator who literally salivated over “sexy” Black women who walked past his office windows)… and I would drive home for lunch most days. Because I could. There was a bend in the road that everybody went around too fast, and I was pretty sure that if I drifted into the oncoming lane during certain times of the day, I’d be killed on impact. Those were the days before airbags in cars, or regular seatbelt use. Oddly, I never thought about the other person I’d be hitting head-on. I didn’t care. I just wanted to end it all. To be done with everything. To stop the pain I was causing myself and others.
Because I believed it was all my fault. I was broken. There was no way out. So, I was going to do the world a favor and get myself out of the picture.
Fortunately, I quit drinking before I could see that through, and I got a lot of support from a 12-step group that focused my attention on my sobriety and getting my life together.
I wish I could say that I never thought about suicide again, but for 20+ years, it continued to be an issue with me. Until I hit menopause, SI was a regular occurrence, and it usually happened when I was in hormonal distress — just before starting my monthly cycle, when my body was completely out of whack and felt entirely at war with itself. As it turns out, one my ovaries was probably malformed and malfunctioning, which could have been why every other month, my life descended into a living hell for no discernable reason.
My SI also tended to coincide with the holidays, when I was in overload, anyway, what with the seasonal changes, the disruption to my regular routines, all the bright, flashing lights, the increased social demands, and extended visits to family — replete with opportunities to open up all those old seeping emotional wounds. Combine a holiday family visit with PMS (that sounds so inoculous, doesn’t it?), and you’d better believe I wanted to kill myself. Just end it. Put a cork back in the bottle and keep the evil genie from ever coming back out again.
I can’t even count the hours I spent howling in despair and anguish I experienced simply living life. I scared the shit out of my partner, that’s for sure. And it happened a number of times a year — usually around the holidays.
Looking back now, I have perspective. And I have understanding about why SI was such an issue for me. I understand the despair that drove me to want it all to End Right Now as a failure of pattern detection. I couldn’t see beyond my immediate excruciating pain, and I certainly couldn’t detect any possible alternatives to what I was experiencing on a regular basis:
Pressure to Perform
Recurrent failure to perform
Feeling broken, rejected, useless
Not being able to do what I truly loved often enough to make life worth living
Impossible expectations to conform and live up to society’s expectation of how and what and who I “should” be
Exhaustion — bone-crushing exhaustion that never quit
Chronic pain that would subside but never went away 100%
Brain fog, confusion, etc. from my impacted and constantly beset state
There just didn’t seem to be any alternative. There was no way out. Nobody was giving me a break. Nobody was just letting me be. It was just one incessant series of demands after another, and I wasn’t keeping up. I wasn’t keeping pace. I was drowning in all the things I was doing wrong, and there was little to no relief in sight.
When I hear people talking about how extraordinary it is, that so many Autistic people take an early route out of life, I have to wonder why. Do they not get how hostile the world is to us? Do they not see how futile it all looks to so many of us? Do they not know how impossible it all is for some of us to sustain and maintain the semblances of “normalcy” that are required, these days? What’s so wonderful about this world, so filled with anger and hatred and hostility and — worst of all — lack of logic and reason, that’s so determined to crush us under its boot heel, that we’d go to great lengths to stick around?
Seriously, who thinks the standard-issue world is such a great place? Yes, there are some really wonderful things about this planet, but the way things are set up, all of it is slated for complete and total destruction, while the vast majority of people just sit around and wait for it to happen — or buy popcorn and find a seat to watch the show. It’s an embarrassment, that so many people think this human-created world is the pinnacle of human achievement, and most days I know for sure that I really don’t belong here.
So, what keeps me around? The fact that I can make my own life exactly the way I want it to be. I’ve worked overtime for years, to get to a position where I can have a life that makes room for me. I’ve had to funnel a vast amount of energy into it, and it takes time and great spirit to defend it and keep it going. But doing that gives me a focus for all the anguish and sadness that’s a constant undercurrent in my life. It fuels me and motivates me to do more, to be more, to create more — and to do that in the ways I see fit, regardless of what anybody else thinks.
But most of all, the thing that keeps me from ending it all is curiosity. I’m too inquisitive and imaginative, to believe that Things As They Are is how Things Will Always Be. That’s highly unlikely. And I’m curious to find out what will happen, and what I can take from it.
Also, I know how fickle I am.
Seriously, if I were to throw myself off a bridge, there’s a 98.7452% chance I’d change my mind on the way down and kill myself against my actual will. I came close to doing that, about 5 years ago — I had the spot picked out and I was getting ready to get in the car and drive out to a bridge in western Massachusetts and jump. But then I thought about what would probably happen. I’d make the hour-long drive, and I’d get up on the cement span, and as I fell, I’d remember something that made my life worth living, but by then it would be too late to do anything about it, and I’d miss out on the rest of the experiences I could have had.
So, I didn’t get in the car and drive out to the bridge. I stayed at home and wished I were dead, instead.
I’m still here, as you can tell.
And I have more to say about this. But right now, I need to go to work and find out what’s going to happen nowin that swirling mess of neurotypical mediocrity.
I’ve been wanting to write something about Autism and suicide for a long time, but I’ve been reluctant to do so.
Everything I say can be incredibly triggering (not to mention convincing about why it’s preferable not to live, sometimes), and I don’t want it on my conscience that I convinced anyone to end their life sooner.
Or that I somehow encouraged / validated that choice.
Everybody has their reasons, of course, and I can’t take the blame for others’ choices. But I’m sure you know what I mean.
I could password-protect it and only let people in who choose to see it. But there’s now way I’ll put it out there in plain sight.
It’s much too grim. At least I think so.
That being said, what do you think? Should I write something about it? I’ve got a lot to say, and a lot of personal experience w/ dancing w/ this subject. And it might help people understand.
I just don’t want to be irresponsible with it and make the world any worse of a place than it already is.
What do you think? Let me know in the comments below.
Update 16. May 2018 – I did write a post about it. And I’ll be writing more. You can read it here:
I’ve been thinking a lot, lately, about how I do — and do not — fit into the world around me.
With every news cycle, every new revelation about what’s going on in the world, every new development at work (heaven help us), and every twist and turn that the world takes around me, I can’t help but think,
This has nothing to do with the things that matter most to me in my life.
And I have to say, it’s a weird feeling. To be so disenfranchised. All . The . Time. Almost as if I’m not even here. I know there are a lot of Autistic people who feel that way, too, so I’m not the only one. All the meanness, the pettiness, the fighting, the drama, the emotion-for-emotion’s sake… it’s all very tiring.
And I’ve really resented this for the longest time.
But you know what? I’m over it. I tasted the proverbial Kool-Aid, and I didn’t like the taste of it. Spat it out, in fact. I’ve been slogging along, over the years, trying to get myself to want to participate, to feel invested, to connect, to dig in and be one of the gang. But after all these years… seriously, what’s the point, anymore? I’ll do my job, I’ll pretend I’m totally into it(!), and I’ll make the best of a bad situation. But don’t expect me to buy in. Don’t expect me to believe. Expect me to perform. But sink my heart and soul into it?
Nah. Not anymore. They had their chance to win me over, and they failed. So, so badly.
This used to legitimately frighten me. I thought that if I didn’t “get onboard” (what? the Titanic?) and sign up with my soul, I wouldn’t survive. They’d cut me loose, force me out, and that would cost me my livelihood, my home… my life.
Now, though, I see how much I really do add to every venture I participate in. I’m a really valued team member, and I bring something useful to pretty much every interaction I have. I’m an asset. Because I make a point of being an asset. Even if it causes me discomfort, even a bit of pain, I make it my job to do my part. And it shows.
And I figure, if people want me around, they’ll have to put up with me just as I am — disaffected, disillusioned, doing the best I can (of course), but not particularly invested in everything going on. I mean, seriously, there’s so much stupidity running everything.
OMG! Have you done your TPS Reports lately?!
I just can’t work up any enthusiasm for that foolishness. At all. I’m just here for the paycheck.
And I’ll do what I damn’ well please, how I damn’ well please. Because my way is waaaaaay better than anything the rest of these mediocre TPS-Report-filler-out-ers will come up with. And even the stuff I don’t know hands-down, I can — and do — learn in a matter of minutes. And they know it, too. They’re kind of in awe of me. And that’s fine. Let them be. It blinds them to my flaws, which is handy…
Anyway, it’s Sunday evening, and I had to work over the weekend, both Saturday and Sunday. Ugh. It wasn’t bad… just irritating. And I would rather have been doing things like work in my garden or go for along walk down the road. But no, had to be inside with my laptop for hours at a time. Cue the mournful violins 😉 I’m feeling sorry for myself, to be sure, and in the morning, I have to deal with my incredibly anxious boss who’s so busy “managing up” that he has no idea what any of us underlings are up to. Until he tells us to switch gears and work on something different.
Ah, me… Monday will come, and we will all suffer. Don’t care. It’s not a good use of my time to fritter away my valuable hours and life force fretting over the stupidities of others. I’ll take what good I can get from every situation:
A steady paycheck
Structured social interactions to meet my social needs in a predictable, formal way
A chance to get out of the house and see what else is out there
Maybe even a swim in the pool at the fitness center(?)
And I’ll disregard the rest, with my AutisticNinja style.
And other people take their cues from me. The funny thing is, even my non-autistic coworkers respect and admire my detachment. They have no idea how excruciatingly painful the whole deal is for me, and they’ll never know. I’m so under the radar with all this, and I’m so non-disclosing (I have enough to deal with, between chronic pain, a disabled spouse, a household to support, a nationally syndicated broadcast to get on the satellite each week, and an ever-increasing workload), the last thing I need is non-autistic people telling me, “Gosh! You don’t look autistic!” like it’s a complement. No thanks. I have no patience or energy for that. I’ll stay under the radar.
And I’ll set a fine example for all my coworkers who know in their heart-of-hearts that this is really all a bunch of crap, and we’ll take solace in each other’s company, sharing tidbits from our lives and commiserating about the sad turn of affairs that landed us in such a woe-begotten state.
Meh. Whatever. It’s a paycheck. It’s a job with a lot of glitz and glamour to it, as far as the rest of the world is concerned.
Right here, right now, I’m more focused on dinner.
It’s a lot more fun to think about than what tomorrow’s going to bring.
Ha! Well, that snuck up on me. I had a pretty full weekend, reading and writing and taking care of some intermittent work that occasionally shows up. I also sorted out a bunch of stuff in my head about things that have been troubling me for some time. And I made good choices about what to do with my time.
In another 15 minutes, I need to get on a phone call with someone in Australia. He’s got a strong British accent, despite his “down under” location, and he talks quickly. Very quickly. A regular “firehose” of words and ideas.
Fortunately, we understand each other, and he knows he has a tendency to overwhelm just about everyone he talks to. Detail. Detail. Autistic, maybe?
Could be… Wouldn’t surprise me.
Anyway, we’re in high tech, and we’ve both been in it for decades, so that’s a high likelihood. We can commiserate about how nonsensical things are, as well as place bets on how long till we get laid off. We’re both over 50 years old, so we’re prime candidate for downsizing. If I’m worried at all, it’s that I won’t get laid off with a nice severance package. I suspect that day may come in another three years, since the handful of dollars they gave me for “long-term incentive” (shares that mature over time, to entice you to hang around) are done in three years. And I’ll be 55 then, which makes me really qualified for a buyout.
Just cut me a check, and we’ll call it a day.
Oh, except… People love me. They want me around. Ha! Isn’t that hilarious? I have no idea what they’re saying to me, half the time, and sometimes I don’t even recognize their faces for a few moments when we first run into each other in the halls. I nod and smile as they go on about whatever it is they’re going on about, and in many of the meetings I attend, I’m completely lost and have to piece it all together later. I can be cranky and uncouth, difficult and abrasive. But I’m a go-team(!) team player, and people really seem to like my imitation of a neurotypical that I perform on a regular basis at work.
Oh, actually, come to think of it, I don’t do that imitation all the time. I also let my Autistic quirks shine through, on a regular basis. Quick bursts of intensely detailed information that no non-autistic person would consider. Stimming, tapping, brushing, etc. Sudden bursts of raucous laughter that make everyone around me jump. Hands over eyes, when thinking… fists clenched tight around a wad of tissue… dancing and flapping… I’m too old and too busy to manage others’ expectations and responses, quite frankly.
Take me as I am.
Because, frankly, I’m wonderful. Being an awesome team player is one of my Areas Of Autistic Specialty (AOAS), and I make an art form of it. No matter what, even if I personally hate you with a cold, burning passion, if you’re on my team, and you come to me for help, I will come to your assistance, and I will do what needs to be done to help you be successful.
That’s why they keep me around. And (ha ha), it’s probably keeping me from getting my early-retirement payout.
Maybe I need to start being mean to people more…
But that wouldn’t be me. It’s not in alignment with my values and principles, so nope. Not gonna do that. I have to live with myself, after all.
So, it’s Monday. I have to start my conference call in 6 minutes. Heaven help me! I hate conference calls, but some days, that’s all I do. It’s the job. Tough luck.
Okay, okay, I get it. We need to build support for folks who really need it. But I think at times that our Autistically rigid thinking keeps us aligned with some pretty rigid support possibilities, many of which simply aren’t available to all of us.
The needs of an Autistic kid in a city may be very different from the needs of a middle-aged Autistic woman living in the suburbs, and they may be very different from the needs of a 30-something Autistic man living in a rural area. And then we have our aging population… men and women… who have been through so much, and now face the double-whammy of becoming elderly (a challenge in society, in general) and having those sensory/social challenges which may become even more pronounced in old age.
I’m worried. Anxious. For myself and all my Autistic tribe. And I’m not alone.
The thing is, I suspect that anxiety takes the edge off my creativity. It locks me into rigid thinking. And it erodes my ability to come up with some really inventive solutions.
Personally, I think we Autistic folks are some of the most inventive people on the planet. For sure. I mean, look around — so much of what we have is the product (I believe) of an Autistic person with an intense interest in One Single Subject. That focus has produced some truly amazing things. And that same focus can help us fix our future.
So, the future… yeah. What does that hinge on?
Well, the past, for one. And also… patterns! Patterns, yes. We plot our course forward by referencing patterns — this leads to that, this causes that, if you do this, you can logically expect that. And we gain a sense of where we are in the world by watching other people and seeing how their lives have shaken out over time.
We are constantly learning from other people, “ingesting” their experiences, learning from their mistakes, and taking cues from their stories. Humans are story-loving creatures, and each of us has thousands of stories of our own that we collect over the course of our lives. They can be based on our own experiences, or they can be from our observations of others. Or we can make them up as we go along. But we have them. We use them. We rely on them to no end.
Earlier this week, I was chatting with an older Autistic man who spent time with younger Autistic people. He said he was really alarmed at how traumatized those young people were, how harrassed they were, how on-guard and roughed-up by life they were. These were young people who all had the advantage of knowing they’re Autistic, but it was such a burden for them.
I personally don’t think we do a good enough job as a community, sharing our strengths and accomplishments… our joys and ecstasy. Autism for me is every bit as much about bliss, as it is about struggle — equal parts, I’d say. But the discussion so often centers around the struggle, perhaps because I think I’m going to get commiseration and support from others who know how I feel. Unfortunately, that’s seldom the case. If anything, it works against me. And I end up getting sucked down into the Pit of Despair, as I perseverate on the idea that somehow, somewhere, sometime, I might get some help.
I won’t… 93.72% of the time. Now and then, I will, but I spend far too much time working towards that 6.28% that’s occasional and intermittent at best.
So, where does that leave me? Sorta kinda where a lot of queer folks were left, back in the 1990s, when so many of us were coming out, but most of the media about being queer (especially movies) were so full of angst and pain and suffering. Suicide, too. Ugh. How many gay and lesbian movies (long before the concept of being queer took hold) showed us being miserable and downtrodden and better off ending our lives? To be honest, it wasn’t altogether unlike what Autism$peak$ has done. And while I’m not 100% on board with comparing Autistic folks to queer folks, all across the board, there are some pretty pronounced similarities.
Being different embarrasses our families.
They try to make us different — more like them.
If we’re lucky, they fail. If they succeed, we’re twisted into a version of ourselves we don’t understand.
Ostracism, misunderstanding, violence. Etc.
Anyway, this is a really long-winded way of saying I think the Autistic community could learn a thing or two from the LGBTQ+ community (and yes, we do overlap), especially insofar as the Pride movement is concerned. Celebrating our differences, developing our own culture and community, taking our place in the world just as we are, and having a lot of fun while doing it… There’s real power in that, I believe. And it’s where I hope we go with our Autistic community building.
I’m not gonna tell anybody what to do or how to do it, but I can do something in my little corner of the world. I can talk about my life in positive terms. I can share my triumphs and joys. I can really celebrate the successes of other Autistic folks. I can focus on the good, the strength, the fortitude, the brilliance. None of this takes away from the challenges we have — it’s merely ballast for my proverbial vessel as I sail the high seas of life.
There are so many wonderful, positive things about Autism that get lost in the crisis, anxiety, difficulty, drama, and shame of growing up Autistic. They get lost to parents, they get lost to us. They get lost to society, in general, obscured behind the ignorance and judgment. We go into hiding. Because it’s safe there.
And then, when we grow up, we can be so alienated, so accustomed to hiding, that our actual development isn’t recognized. Or people are so used to looking at us as they remember us, once upon a time, that they don’t give us the chance to shine.
I think that needs to change.
I can’t speak for anyone else, but I plan to change it on my side… do my best to unleash a torrent of writing about how absolutely excellent it can be to be Autistic. It might piss a lot of people off, because it may undermine their message about how we need help and support. But I’m not going to lose the good parts of my life, while I wait around for the government or some organization to meet my needs.
Certainly, it would help… but I think we can do more than that.
All the talk about how Autism diagnoses have skyrocketed in the last 30 years, overlooks one key factor:
Once upon a time, the Autism Spectrum wasn’t pathologized. It was developed.
It was very much a part of life, and there were institutions and mitigators in place to help weave that neurotype into the overall fabric of life.
I was raised in an area that’s chock-full of Autistic folks. Is this abnormal? Not on your life. In fact, it’s the norm. And every aspect of growing up is/was geared towards training individuals how to be responsible members of the community. It helps that it’s a rural area, where everybody has to pitch in, no matter what, so nobody gets a pass to completely drop out of society because of any difficulties they may have. Society needs them, it’s made clear. And whatever they can do — in whatever measure — is not only needed, but required.
Take my aunt, for example. She just passed away last year, and she was probably one of the most “obviously” Autistic persons I’ve ever met. All the classic behaviors, all the classic traits… that was Aunt M. She definitely did not have an easy life, but she lived by a code that placed others first at all times. She had a quote on her dresser that effectively said, “Whatever sufferings I may have, others have it even worse. And in the end, the question is not how much I’ve gotten out of life, but what I’ve given to those who are struggling more than I.”
That’s the ethos I was raised with overall, and I can tell you that Aunt M personified that, each and every day. She had her challenges, of course. My mom had to constantly watch out for her, from the time they were both young girls, till the day she died. She was bullied, she was threatened, she was abandoned. And she had intense issues with anxiety and social interactions.
But she lived her life. She lived by principles. And in the end, he had such an important place in life, her funeral was attended by close to 100 people, many of whom relied on her for many things throughout the course of her life.
I was raised in the same way — principles. Be a responsible member of society. Put others first. Realize that others have troubles, too, and rather than thinking about what I need to get out of the social equation, I need to put myself out there and be as helpful to others as I can. It’s not about me. Yes, I have intense suffering and challenges at times. Yes, my life is a non-stop parade of pains and joys — often so intermingled, it’s hard to tell which is which. But in the end, what I contribute to the world is far more important than what accommodations I get to secure my own happiness.
Now, you might dismiss this as being some lofty approach by someone who’s not impacted all that heavily by Autism. But you’d be wrong about that. Everything I have, everything I can do, it’s all been hard-won and paid-for at a steep price. And I’ve been around long enough to realize what a toll it’s taken on me, over the years.
Does that toll matter? Nope. The bottom line, for me, is what I add to the overall human equation. I’m responsible for my corner of the universe. I have to keep it clean and orderly and do my best to not be a liability towards others. I have to keep my own suffering out of view, because what I have to give is far more important than anything I feel I need to take.
All those years, when I was in excruciating chronic pain and some days couldn’t get out of the bed… the short time I was homeless… the times when I’ve had to quit jobs and move on, because the environment was so painful I couldn’t tolerate it anymore… Through all the meltdowns, the shutdowns, the touch-is-pain moments… The one thing that kept me going was that it wasn’t only about me. I had to get up and go to work to support my household. And if I couldn’t manage a full-time job, then I had to find a regular source of income that let me work part-time and still make enough to pay my rent.
The thing that carried me through all those years of intensity and hardship, was my upbringing by parents, grandparents, and a wider community who were all Autistic. Who knew what it meant to struggle, and who still pressed on and pushed me to deal. They didn’t let me off the hook. They kept at me, and kept reminding me of what was Right, what was Wrong, and urged me to do the Right thing. Even when it was impossible, they still demanded that I do my best. No excuses. Just get on with it. Yes, life is painful and awkward, but that’s what teaching and training were all about. I had to learn. I had to be taught. I had to be raised.
There was never the assumption that kids already inherently knew the right thing to do. There was the assumption that adult life is challenging and requires skill, and like any skilled endeavor, that takes training and practice and continuous discipline. The skills I have now, which have allowed me to live a really full life and experience so much that many people only dream about, they didn’t magically emerge from my pristine primal state. They were abilities that were identified, prioritized, and emphasized as the sort of thing that all adults do.
And there was no argument.
Yes, it was tough. Yes, it was challenging. Yes, I still have leftover “stuff” from all those years of training. I was enculturated into an Autistic society, and there were Rules and Regulations for everything. It was rough, at the time, but all the hard lessons have made it possible for me to live my life… regardless.
The skills I developed at just getting on with things, for putting others first, for making the effort to be a contributing member of society — even when I was disabled — made all the difference in the world. Society has a way of looking out for those who support it and contribute, and that’s always been my “safety net”, if I even have one. I make myself useful to others. I contribute. I’m not perfect, I’m pretty weird at times, I’m Autistic, I can be pretty off-putting at times. But in the end, my goal is to make myself an asset to the world around me, not only devote myself to getting my needs accommodated.
That’s all because I was raised by Autistic folks. Those were the Rules.
Today’s brief note comes from from Marcus Aurelius’ Meditations
IX. Consider how quickly all things are dissolved and resolved
… the bodies and substances themselves, into the matter and substance of the world: and their memories into the general age and time of the world. Consider the nature of all worldly sensible things; of those especially, which either ensnare by pleasure, or for their irksomeness are dreadful, or for their outward lustre and show are in great esteem and request, how vile and contemptible, how base and corruptible, how destitute of all true life and being they are.
So, things come and go. Pain comes and goes. Energy and vigor come and go.
One day, I’m fine. The next, I’m pretty much disabled. That, too, comes and goes. And there’s really no way to predict how things will be. I’ve tried. Oh, how I’ve tried. Doesn’t work. Best thing is to just stay loose and roll with it, so to speak.
“Consider the nature of all worldly sensible things…” All of them are ultimately resolved. They, too, shall pass. And if I wait for that to happen before I go on with my life, I’ll never get anything done. I won’t have a life worth living.
So, today, as my bones ache and I have less feeling and coordination in my arms than usual, I’m easing into my day… Doing my exercises that ease the pain and increase movement, so I can at least do the bare minimum… drinking plenty of water… getting some good food in me… doing less of a workout, this morning, but a workout nonetheless. And reading.
Reading things I love, that lift me up and brighten my day.
I’ve been thinking a lot, lately, about how … abruptly Autism has seemed to have emerged on the public scene. So many people getting diagnosed, supposedly in “epidemic” proportions. “Autism wasn’t a problem when I was growing up,” people say… “It must be something new — vaccinations, environmental toxins, gut health, gluten, and more.”
I’m not going down those particular ratholes, because I think there’s another factor that’s really contributing, not only to the number of people who are getting diagnosed, but in the distress that we’re experiencing because we’re Autistic.
I think it has a little bit to do with the surge in pathologization (if that’s a word) of behaviors that have been around since the beginning of time. There have always been folks like is in the general population. But society’s acceptance of our traits has dramatically decreased, over the past 40 years. And that, I believe, contributes far more to the issues and challenges we experience, than any of the commonly blamed “causes”.
Society has never been super-accepting of outliers. My ancestors fled their homes many times over many generations, as a result of local people not wanting them there. For over 1000 years, they routinely had to move along to some other locale, because people didn’t like their language, their culture, their religion, their ways. Back and forth across Europe they went, chased from one country to another, because they just didn’t fit.
So, the human race has never been strong on the whole acceptance bit.
But now… I’ve noticed a massive shift in people’s acceptance levels of traits that I grew up with, which were never seen as liabilities in the place/family of my origin, which were simply seen as differences that gave you certain strengths, where others were weak — and vice versa. It’s not just Autism traits, either — flapping, talking fast and long about fascinating subjects, being sensitive to foods, needing to stim — it’s everywhere.
When I got into high tech, 25 years ago, I was an outlier. There weren’t many women on the technical side of the house, but people made room for me. I earned my place, weirdo that I was (and yes, I am a weirdo, and proud of it!). And there wasn’t the raging sexism that I see in high tech, now.
And I think television has had a hugely influential role in all of this. Because we’ve been inundated with all the messages, for countless hours, on countless channels, about how men and women are supposed to look and behave… for how “normal” people are supposed to look and behave. Television has provided a bland, one-dimensional template for everyone to abide by, creating emotional bonds between audiences and invented characters which are the product of a media industry that’s almost mind-bogglingly homogenous. Writers of color, Autistic writers, disabled creators, people who don’t fit in the mainstream, don’t have great representation there.
And it shows.
Personally, I have to wonder how much television people who freak out over the “Autism epidemic” actually watch. The folks who “light it up blue” and support A$… how many hours have they spent in front of the glowing box (or eyes glued to a device), internalizing all the subtle, one-dimensional messages about what it means to be a human being, and how we should behave? People who cringe at the different ways people present and identify, gender-wise… who squirm at speech patterns and behaviors that don’t match what they think are right… how many of them have had their social expectations set by all the t.v. characters they connect with each day and each night?
I have to wonder.
And I have to admit, I really despair, when I see what kinds of characters are on t.v., as well as in movies. For the sake of drama and an unfolding story, embarrassingly immature people are trotted out for our “entertainment”, their foolishness normalized, their vacuity standardized, their shallowness presented regularly as “how people really are”. It’s depressing. And when you toss in the music and laugh tracks and subtle ways creators and producers use to entice viewers and hold their attention… Ugh… even more depressing.
Over the past years, I’ve been watching less and less television. I watch a few shows regularly, but mostly I watch movies (which are slightly better, but also have their shortcomings). And the more time I spend away from it, the more tolerant I find I am. That includes tolerance for myself. I’m not as intensely sensitized to the ways I differ from others (of course, menopause helps, because I’m no longer hormonally inclined to give a damn what others think). I’m more tolerant of others, as well. Differences don’t bother me, the way they used to — and the way they bother others.
Because my templates for acceptable human behavior haven’t been defined by a handful of white, middle-class collaborators who live in their own little bubble and work behind closed doors.
And I have to wonder, if more people just didn’t watch t.v. and let it tell them what it means to be human, how much more human could we actually become — and allow others to be?