Well, it’s been an interesting three months. The project from hell (…Hell, I tell you) just about killed me. My partner’s health has been declining. And for some reason, this summer just took a lot out of me. I wasn’t expecting that. I had a vegetable garden that I was tending, early in the summer. It got off to a great start. Then it started to rain. And it got hot. And work was awful. All-consumingly awful. Non-stop. No sooner did one thing get sorted out, than something else awful happened.
As though people had nothing better to do than make everyone around them miserable.
Well, anyway, we finally launched that pitiful excuse of a project… to the intense wailing and gnashing of teeth of just about all our users. Apparently, nobody came up with a comprehensive communication plan. One day, people were able to use the website. The next, they weren’t. It would be funny if people’s lives didn’t actually depend on it, but the do.
And it wasn’t funny.
Of course, much of this could have been avoided if people had just paid heed to what a whole bunch of subject matter experts were saying. But no. The brand new owners of their new toy (our website, which got aquired a year ago)… well, they wanted to do things their way.
So, I did what any self-preserving, sanity-defending person would do.
I went on vacation for a week. Checked out. Didn’t look at answer any email (I couldn’t help looking, just a few times).
I walked around on the beach. I got a tan. I ate good meals. I made fires on the beach.
Now I’m back. I’m doing a lot of programming, these days. Working on some projects. Regaining my interests in areas that fell by the wayside, over the past 10-15 years, when my life seriously went to sh*t. Getting myself back.
Try as I might, I just can’t seem to fit into any type of community. I fit into all of them, to some extent. Enough to make others feel like I belong.
I mask and blend extremely well, after all. It’s one of the advantages of being Autistic — learning how to survive, even thrive, in all sorts of conditions. Being able to play my part, support others, be a productive participant whose contributions are valued.
I’m a member of the community gardens in my town. I’m also on one of the town boards. I’m a valued contributor at work, and people seek out my input. I’m loved by my family. I’m also a member of an Autism support group for folks over 50 years of age, and they miss me when I can’t attend.
All this is great. For them.
But I never seem to fit well enough to be truly comfortable myself.
This is especially true of the whole new gender / sexuality scene. There are so many “new” words for different ways to be, I can’t even keep up. And while I can relate to a lot of them, I don’t find myself neatly fitting into any one catgory. Ace. Aro. Demi. Pan. Enby. Queer. Gender Fluid. I probably fit into any or all of them, at some point during my life — or day — but nothing ever “sticks” for me very long.
And I’m sure there are plenty of other definitions and categories that I’d fit into, here and there, as well.
But nothing really fits me 100%. Even if it seems to, it rapidly changes. And then I don’t fit anywhere.
That’s one of the reasons (I think) that I haven’t been blogging that much here, lately. The whole Autism landscape feels like such a minefield, and anything anyone says can be weaponized against them — or someone else. Even honest mistakes or lack of information get lobbed back at people like they’re deliberate attempts to harm others. Maybe they are, maybe they aren’t. Or (given what I know about human nature) they’re a combination of both. There’s never an easy answer.
But that seems to be what so many people are looking for, these days.
Easy answers. Clear delineations. Black-and-white categories to define who’s in, who’s out, who belongs, who doesn’t, and so forth.
A lot of that seems to be coming from the younger generation(s), it seems. Maybe I’m wrong (it’s been known to happen), but the pattern I see is folks who are young enough to be my children doing their best to make sense of the world with new categories, definitions, re-definitions, and unique identities. And I don’t fit into any of them. I understand the desire to do that. I did it, myself, when I was in my 20s. But I just don’t have the spare energy for that, these days… especially considering what how impermanent my “final say” assertions about the world turned out to be.
Plus, I have a lot on my proverbial plate. I’ve been working insane hours. Not getting enough sleep. Keeping my garden going. Driving my partner to and from her events. And trying to keep my own projects going. There’s so much happening in my life, I just don’t have the resources to keep up with all the new ways of thinking about people.
Or of thinking about myself.
Back about 20 years ago, I lived as a man for some 4.5 years. I put my female body into male clothes, a male role, a masculine way of moving through the world. I was pretty serious about transitioning, at that time. And then I ran into the buzz-saw of Community Requirements, and the types of behavior and acceptable conduct felt even more restrictive to me than outside the circle I was hoping to join. Nasty comments on online forums. Getting sized up and dismissed.
I didn’t feel free. I felt even more restricted than I had before. And I realized that I didn’t belong there, either.
Everybody’s got their “stuff”, of course. And who knows why people interacted with me the way they did. 20 years ago, the trans community was going through a lot of changes, growing pains, just getting started. And not everybody was sweetness and light.
Rather than getting into it and stirring things up, I dropped the whole transition thing. There was really no support for me, personally, and the costs outweighed the benefits. Everybody’s different, and everybody has their reasons. There are plenty of people who see more benefit to shifting their place in life, and I’m glad they have a place to go to.
But for me, there doesn’t seem to be any one place where I’m 100% comfortable. Except with a very few friends, and also in my own company.
I guess that points to me being Autistic. Of course it does. And of course, it’s not a deficit in and of itself. If anything, it’s a strength. Because the rest of the world is pretty much a big old mess. And even the parts that aren’t a mess can be so distressing to interact with, that it’s only logical that I (and others like me) would pull away and not want to have anything to do with it.
That goes for Autistic corners of the world, as well. Those of us who are hyposensitive can be painful for those of us who are hypersensitive. I should know. I was raised by a hyposensitive mother, whose interactions with me were the equivalent of her beating me on a daily basis. She didn’t realize it. It wasn’t her fault that she couldn’t sense where her body was in space, or she had to over-contact every single thing and person in her life to experience them. It’s not her fault, and I quit blaming her, years ago.
But that doesn’t change the fact of the effect of her behavior on me. I’m still stuck with the enduring trauma. I’m still convinced, deep down inside, that I’m a bad person who deserves to be punished, because I felt “punished” every single day of my life in her house, and I’d been taught that you only get punished if you’ve done something wrong, or if you’re a bad person. No matter how unaware she was, I’m still tasked with recovering from it, every living day of my life.
Then again, those of us who are hypersensitive can be pretty intolerable for those of us who are hyposensitive. We’re picky, we’re persnickety. We’re so demanding. We need a lot, to function, to feel at home (if we do at all), to feel safe… if even for a moment. I pitch fits. I freak out. I snap. I meltdown. I collapse. And that’s not helpful for anyone, especially me. But that’s where I’ve landed. That’s how I am. And it’s my job to figure out how to live with it in ways that don’t harm everyone around me. I harmed a lot of people around me, for many, many years. And I’m tired of it. I’ve devoted much of the past decade to learning how to not do that, anymore.
But no matter how I try, I’m not sure I’ll ever really get to a place where I really feel comfortable. Anywhere. It probably has a lot to do with me being as sensitive as I am, which makes it hard for me to fit in over the long term. I’m most comfortable by myself, and that’s okay. And at this point in my life, I’m getting used to the idea of piecing together community where I can get it — and not relying on any one group or any one category to provide a safe haven or a sense of identity for me.
In some ways, it feels dangerous. On the other hand, it feels safer. More realistic. None of the labels fit me completely. None of the identities feel like they’re a good match for all of me. I almost envy people who feel like they do fit into a category, like they do belong in a certain group.
But not quite.
Well, it’s Monday morning. I have to get to work. I’m officially out of time, for today, for thinking about this stuff. Maybe later, when I’ve caught up on some sleep.
It’s been an incredibly busy past 4 weeks… or has it been 6? Business travel, deadlines at work, projects not turning out the way they should, people making excuses, left and right, and the very people who are making a mess of things taking control of all the projects.
Ah, me… I’m at a loss, as are many of my co-workers. It’s incredibly dispiriting. But at least I’m not alone in my despair. I have plenty of company (fortunately or unfortunately).
One of the benefits of being too busy to think about much, is that I find out what matters most to me. Because that’s the stuff that bubbles to the top of my thought process. That’s the stuff that works it way out, like rocks emerging from the soil in the New England spring. All the rest of the stuff I’ve been thinking about is apparently compost… it will go through its decomposition and melt back into the background of my life. But some things have “sticking power” and won’t go away.
It’s those things that I’ve been thinking about.
So, of course I’ve been thinking a lot about my childhood and how it set me apart. When I was younger, I was tempted to believe that my lot was terrible, painful, horrible. That it was too punishing for words, and oh, how I suffered. It’s true. I did suffer. But that’s just what happens, sometimes, and I’m through with thinking that suffering is a sign of aberration, of something being amiss. Nope, sometimes that’s just how things go. And the magical part of it is, I get through it. All of it. Just because it’s uncomfortable, even painful, doesn’t mean it’s necessarily a bad thing. Because, after more than half a century on the earth, I now realize that pain is very much a part of life — but suffering is something I make worse, myself. By judging and resisting that pain.
It’s much more productive to take a Meh attitude — a Meh-titude, if you will — and get on with it. Get my mind off the anguish (much of which I’m causing myself) and just get on with living.
My childhood, in retrospect, really worked in my favor. It prepared me for the world as an adult. It made me into the person I was. And it was full of wonder… precisely because I grew up in an autistic household which absolutely, positively accepted my Autistic traits for what they were and revelled in them, rather than pathologizing them.
Don’t get me wrong. It wasn’t all delight and bliss. My childhood was, in fact, extremely difficult, both inside and outside the home. My family got a lot of things really wrong. But the parts that my family got right, they got really right. And I’m a better person for it. So many of the “disordered” behaviors — repetitive motions, echolalia, alternative play styles, talking a “blue streak” about passions, having passionately focused interests at all, even my frantic energy — they were all recognized and welcomed as the things that made me what I was.
My Mom, in fact, loves to talk with exuberance about so many of my behaviors that qualify me as Autistic. Singing a song to myself over and over and over for days at a time. Dismantling a toy vacuum cleaner that was given to me, so I could play with it my own way. Immersing myself in Native American studies, learning about trees, animal tracks, animal scat. Talking, talking, talking some more about the things I cared so deeply about. And running wild, all over the place, making my Mom nervous, but never actually getting hurt.
My parents remember those things as wonderful. Because they were me. They could also relate. And for all the things I did wrong and was punished for, at least — at the core — they recognized and loved me for who I was. Because that was me. And they’d both been punished enough as kids for their own Autistic traits, that they never wanted to do that to their own kids.
That’s one thing they certainly got right.
And I’m glad I can see it now. Because for years, I got so hung up on the things they got wrong, for their shortcomings, their failings, their neglect and abuse, that I missed the ways they were so good for me, so healthy, so helpful and supportive. And although I’m still at odds with the community of my upbringing (they still seem a bit cultish to me, to be honest), I can still see there was a lot of good in it for me, that helped make me who and how I am.
It helped make me healthily Autistic, in so many ways. So much so, that I have to just look at people (or shake my head when I’m online) when they talk about Autism only being a problem. Or only a disorder. It can be problematic. It can be disordering, even disabling. But in and of itself, Autism is not the enemy. And it’s not only one thing.
It’s not only one thing at all.
It’s many things. And we can choose for ourselves what we’ll do with the full spectrum of experiences. That much is very clear to me.
With that being said, it’s a gorgeous day. I have an all-day conference call I need to attend — and no, I’m not looking forward to it. It’s part of the job. It doesn’t happen every day. I’ll survive. Plus, I get to work from home while I’m doing it, and I can sit out on my deck and enjoy the breeze and sunshine, which is wonderful and delicious today. There are worse ways to make a living, that’s for sure.
In a little less than three days, I’ll be lugging my “carry-on” to my car, putting it on the back seat in a position that will make it easy to grab, when I finally find a parking space at the airport garage and get ready to jog to my departing terminal. My partner will be standing at the window overlooking the driveway, and she’ll turn away as I pull out onto the road. It’s bad luck to watch someone drive away, she says. She’s always said that. And I picked up on the habit, too, years ago.
I’ll make my way to the airport, driving the 45 minutes in a constant state of low-level anxiety, since I’ve cut it so close — either got stuck in a freak snowstorm, or went to the wrong terminal — and nearly missed my flight at least once. For all the times I’ve flown for business, I’ve been later than I liked a bunch of times, but I’ve only cut it razor-thin close once. But once was enough. Yes, they held the plane for me, and for that I’m grateful, but the mortification… all the irritated eyes on me, some of them my own colleauges, because a bunch of us were flying to the same convention for work… that’s something I’ll probably never live down.
At least, not in my own mind.
This trip is a rough one. The stakes are higher than most trips I take, although it seems like every single business trip has increasing levels of criticality. I don’t travel for pleasure — at least not like this, with planes, trains, and automobiles. My idea of travel for pleasure is a three-hour drive to the beach and a week of stationary, stable routine, with plenty of healthy food, long beach hikes, and spontaneous naps sandwiched between sunrises and sunsets over the ocean.
This trip will not be like that. I’m crossing the country — the whole continent — and my routine will be the main casualty. Try as I might, each time, I can never seem to get enough exercise or eat the right food. And every morning and every in-between break during the conference, there will be nothing but different configurations of sugar and carbs and chocolate and caffeine stacked high on wide silver platters, all of which are poison to me. I’ll be stuck talking to people. I’ll have to mix and mingle. I’ll have to go to the cocktail reception, possibly get stuck at a group dinner. Help. Help.
h e l p
I’m also staying in an upscale hotel in a city whose development represents just about every aspect of 21st Century “modernization” to which I object. 25 years ago, when I lived there, the city was smaller. Funkier. More human. A place where people on the margins of life could go about their business and be left alone by other people on the fringe who simply nodded and passed by. Now, it’s built up, tricked out, pimped within an inch of its life… chock full of respectable mainstream people flush with the glory of high tech ventures, rolling in cash and flaunting it, oblivious to anything other than their own milestones and timelines and key performance indicators.
Into the midst of this I shall go — to the heart of it all — becoming yet another corpuscle in the lifeblood of that city, that industry, those trends. And I shall play my role as a “willing” participant who embraces the future arm-in-arm with the Overlords who decide who gets a place at the table. I shall have a place at the table, because I do a damned good impression of someone who belongs there.
I do such a good impression that my crunchy granola cousins who live out there don’t really want to see me, when I say I’m coming to visit. They’re polite about it, of course. “Oh, really… that’s great…” they say on Facebook when I message them. But the last few times I was there, it was clear they consider me a part of the problem, one of the high tech interlopers who’s taking over the Tenderloin and driving up rents for everyone else. Crowding out People of Color from the neighborhoods they filled, before the gentrifying real estate prospectors got hold of them. Gold rush. It’s always a gold rush out there, and they think I’m part of it.
What they don’t realize is that I’m horrified by what I see, the trends that have emerged over the past 15 years, the ways that the industry I work in has trashed lives and wrecked communities. In all honesty, it’s trashed my life more than once. And community? I hear about it, I talk about it, I imagine it, but it’s been a long, long time since I experienced anything like that under the watchful eye of The Owners who need to make sure we’re getting our work done on time.
What my cousins don’t realize is that if I could avoid doing this trip, I would. I hate what’s happened to the city. I detest what’s become of the people, all wandering around the streets with their eyes glued to their mobile phone screens as they meander across wide crosswalks and do their zombie stagger down the sidewalk. I hate the hype, the shine, the glitz, the glass and steel.
I wouldn’t go anywhere near it, if I didn’t have to.
And I would never see my cousins again. That would be a relief for everyone, because I know I embarrass myself around them by talking too much… by my clumsy, domineering pacing… my conversational roughness… my lack of spontaneity when they talk about things they care about (but I know nothing about). I’m just another white high tech dominator showing up to kill their buzz.
But I have to go.
The reasons are complex, of course. What is there in my life that isn’t? I have to go, because I’ve been told I should. Because my boss said I should. And I know I should. I run a program that’s based on the technology company that’s hosting this conference. It’s a user conference. I’m a user. I’m supposed to have a high profile. I’m supposed to be a “Player”. I’m supposed to make my presence felt. It’s what someone in my position does — makes their presence felt. Show up and participate. Engage. Contribute.
Please, God, make it stop. My pleas would sound more convincing, if I actually believed in God, but there we are… How ironic. Me praying to a perhaps-non-existent God for release from a situation I got myself into.
Anyway, in the end, I’m sure it won’t be the unexpurgated horror show I anticipate. None of these situations are. And the one mitigating thing in all of it is the fact that I’ll be presenting at this conference. In front of a room full of my professional peers… even a few superiors. Putting on a show. Putting in a good word for a product I detest, singing the praises of a vendor whose people are the bane of my existence and who have cost me a lot of sleep, over the past year and a half. It’s fair — and accurate — to say that I hate them — ALL of them — with a cold blue flame, and if they were hanging off a cliff and I were the only one who could save them, I’d actually have to give it a lot of thought to decide what to do.
It’s that bad, my attitude towards them. I, a hopeless benefactor who has stopped traffic to move a tiny baby snapping turtle off the road, am questioning whether I’d spare a human life. How low I’ve sunk…
But yet, I’m doing this. I’ve got a pretty compelling presentation pulled together, along with a colleague (whom I alsodetest with a cold blue flame — ha ha — because she’s so hellish to work with), and we’re gonna rock the room, I’m tellin’ you. How could we not? Once I get up there, in front of the room, I’ll turn on the charm, crank up the compelling use cases, and do my seasoned best to put us all in the most glowing light possible.
I’ve done this a lot, actually. I’ve presented professionally and for fun a lot of times. More times than I realize. I’ve done “roadshows” at work, making the rounds to different offices to present mission-critical information to top-performing teams. I’ve spoken at funerals (I seem to be really good at that, actually). I’ve spoken at special interest groups. I was in Toastmasters for a while. And I’ve gone on the radio to talk about current events in the USA with people far from this country who couldn’t figure out what the hell we were up to, over here.
I love to present, actually. It’s scripted. It’s focused. And I’m usually well-practiced. I get to talk about the things I love and know a lot about, and people get swept up in my excitement. I’m allowed to be geeky and nerdy and a subject matter expert. After all, that’s why I’m there. And this presentation is the one thing grounding me, for this trip.
It might sound strange, coming from someone who dreads being around people, but think about it — my whole trip will be organized around that presentation. And I’ll be identifiable as a presenter, which will give me an identity that people respect. After the talk, I’ll be recognized as a subject matter expert, and people will reach out to talk about my presentation with me — an area of conversation I’m ready and willing to discuss. And best of all, my co-presenter is a legitimately awful presenter. She’s going to make me look really, really good. It will be the sweetest balancing of the scales of justice, considering how miserable she’s made my life over the past 18 months with her incompetence, lack of transparency, and outright sabotage.
So, I’m hanging all my hopes on that talk. It’s only an hour, but it’s got my full attention. It will focus me. It will center me. It will make me a star. And the company I detest, whose product I’ll be praising, will owe me big-time for it. They’ll know it. I’ll know it. Again, the scales of justice will get just a little more ballast.
If I weren’t Autistic, I couldn’t pull any of this off. Because I wouldn’t have the practice I’ve gotten at functioning through the pain, the frustration, the anger, the rage. I very likely wouldn’t have the tolerance for all of that, as well as the deliberately honed ability to not only “fake it till I make it”, but actually outperform anyone who truly likes and believes in what they’re doing. I feel the way I feel. I think what I think. But I still do the job that’s required of me. I still perform, regardless of the anguish. I outperform, perhaps because of it. And in the end, no one is the wiser for it.
I had such great plans for this past long weekend. But, of course, things turned out very differently than my designs. No surprises there. And yet, I am perpetually surprised when things don’t live up to my engineered ideals.
You’d think I’d learn.
I had been hoping / planning / intending to spend my time intentionally. I was in serious need of some relaxing and recuperating after the prior week. I wanted to catch up on my reading, do some gardening, relax, nap, eat interesting food which I’d prepare at a leisurely pace, and have a generally restorative time. Maybe make hamburgers on Memorial Day. Watch a movie on Sunday afternoon. Call my parents.
Instead, I had a busy Saturday morning, got all “socialled-out” by interactions at the community garden, including some faux pas along with some connections. I met some of my co-gardeners in the space we share. We all have at least one 8-foot x 10-foot plot. Some of us have two plots. We’re a diverse group – an elderly Chinese man who only speaks Mandarin, an elderly white hippie-ish couple, a Black woman whose mother helps her out, an Asian-Caucasian bi-racial couple with two girls, and the older white guy who runs the place.
The elderly Chinese man communicates with us by dictating to Google Translate and showing us the text translations. At first, he was showing me Chinese-Russian translations, and I couldn’t explain that I couldn’t read them. Then I got my phone in the action, and after I explained to him that he wasn’t translating to English, he changed his settings, and all was right with the world. I also showed it to the other gardeners, who thought they needed an app to do it. But no – Google will translate text, and you can dictate the text for it to translate, so we were all fully enabled and empowered within a few hours’ time..
The day was bright. I had a lot to do. I was tired from the week. Everybody wanted to talk. Ugh. I mean, yeah – they’re lovely people, and there are worse groups to be around – but after a few hours, I started to wear thin. Especially as people continued to engage with me and discuss their plans. I found myself getting snarky and bitchier than I normally am. Fatigue. Bright sunlight. F*cking mosquitos. Anxiety over my beans, which are being chewed on by something, not to mention the constant threat of rabbits. Fencing. I need additional fencing around my plot, because the overall fence isn’t holding up. Hm. It keeps the deer out, but not the rabbits.
We’ll have to do something about that.
I’d really rather not have to deal with people, when I’m gardening, but I asked for it. I joined a community garden, so that’s what I get. Community. Good lord, what was I thinking, spending 4 hours on a viciously bright Saturday morning, when I was still hungover from all the adrenaline rushes from the week before?
I know what I was doing: trying to Live My Best Life, that’s what.
Well, I gave it my best shot, and I’m sure not everyone will remember me as the snarky, bitchy new kid who gets prickly over the garden politics of who gets what plot (just give the old Chinese man the plot next to him – nobody’s using it, anyway! – why can’t everyone just handle things logically, instead of jockeying for position?)
After my time there, chatting about this and that, I ended up feeling pretty deflated. Everybody wanted to discuss their domestic situation… as if it matters to the seedlings in your garden, whether you have kids or living parents or nieces and nephews, or you love your job. I hate those kinds of discussions. They feel intrusive. And no, I don’t want to announce to the gardening community that I’m a big ole dyke with a disabled spouse who works too-long hours in the employ of the Masters of the Universe. What difference does it make to the health of my peppers and tomatoes? Will that information make my carrot seeds actually sprout? Nope. So, why dwell on it.
I like my conversations topical. I hate schmoozing and connecting over personal details.
Hate it, I tell you.
After I extracted myself from that awkwardness (which I’m sure seemed perfectly lovely to everyone else), I rallied and got my Saturday errands done in pretty decent order. Ran to the post office and mailed out the package my partner left on the counter. Took the trash to the dump. Went food shopping. Did some cleanup around the house. Had some lunch. Took a shower. Got a nap.
The nap helped a little, but more than anything, it reminded me how exhausted I was. What was I thinking, doing all that activity first thing on a long weekend? It wasn’t like I had an overabundance of energy, to begin with. But my Saturdays are often like that. I’m coming off an exhausting week (typically), and I have just a day to get all my most unpleasant errands done… which I do. And then I crash on Saturday afternoon (if I’m lucky). I can usually rally, but last week was pretty grueling.
Well, anyway, my plans for a lot of reading and relaxing didn’t exactly materialize. Sunday and Monday were rainy, which was fine. That’s normally a relief for me. But I was thrown off by the long weekend, for some reason. My pacing was off. And I was really tired and irritable with my partner, resulting in too much friction, too much arguing, a little yelling, a bunch of tears. I really hatewhen that happens, especially when it’s pretty much centered around my meltdowns. It’s like my meltdowns are whirlpools in the rapids of my life, and as I sail downstream, paddling wildly, I keep getting sucked into them… pulled down into the roiling darkness, as I’m flailing madly, trying to keep upright, trying to keep from tipping over or getting pulled into the Darkness.
The worst thing is, it often feels like my partner is sitting in the back of the boat, commanding me to keep the craft righted (not bothering to pick up a paddle, mind you). But that’s another blog post for another day – still working my way through understanding how to better handle that type of situation.
Anyway, my weekend ended up much more active than it should have been. I lost sleep, didn’t catch up on it. And the things I’d been planning on doing… well, most of them fell by the wayside. I did read a lot, though. I’m working my way through Katherine May’s The Electricity of Every Living Thing, and it’s a real pleasure – I’m nearing the end, and that saddens me. 😦
I got some writing done. I got some sleeping done. I got my exercise. But rest and recuperation? Nope. I’ll have to see if I can work that into my upcoming week — my typically structured week with the usual routine, which is so important for my regular maintenance and mental health. Three days off was a plus. But I’m glad it doesn’t happen all that often.
P.S. On a bright note, we did manage to get one of our rooms partly cleaned out and tidied up. We’ve been getting increasingly boxed in (literally) by all this stuff that we haven’t managed to either throw away or put away. Executive dysfunction, combined with exhaustion and bare-minimum interest, isn’t the most domestically beneficial state to live in. But yesterday, we actually did something about that. Bonus.
I’ve had a really, really busy past six months. No, make that 9 months. For the last part of 2017, I had a handful of projects I was trying to get done, and I really pushed to make it happen. Same thing happened in the beginning of 2018. I kicked ass and hit most of my targets. Some of them I put off till later, thinking I’d have time… later.
Then I crashed. In a big way. I crashed so hard, I literally forgot about the projects I had been finalizing, and I went so far as to delete a website I’d set up for one of them. I didn’t think anything of it, when I did it.
Now, however, I regret that. For reasons I won’t go into, right now, I can’t recreate that website. It’s gone. Oh, well.
Actually, it’s probably for the best. Looking back at my projects, I realize I was spinning off on too many additional tangents and “complementary” activities, and that dissipated my focus. It’s better if I keep things narrowed and specific.
Anyway, I’m coming out of my crash, recovering from my burnout. I hate those periods of enforced rest, when I can’t think clearly if I try. I’m useless to anyone, outside of the rote discharge of duties. And that means I’m useless to myself, because I’m all about improvising and “coloring outside the lines”. But after pushing hard for 6 months (which, to be honest, I love), I have to give myself at least 3 months off to recover.
Well, anyway, I seem to be coming out of my down-phase, now, with some new writing projects ready for resuming. I’ve got my “Autistic employment hacks” series going on… as well as guides to help people do things like save lots of money on really good laptops, publish eBooks, and other ideas I’m still refining.
And it feels good. I’ve really been wrestling with a lot of depressive feelings, lately, wondering What’s the use? and not feeling all that bad about the prospect of dying, someday. I know, it’s extreme. But that’s where my head/heart ends up, sometimes. Especially when I’m tired and I can’t connect with my “AAIFs” (Areas of Autistically Intensive Focus), I get so dragged down. To the point where life doesn’t feel worth living.
Fortunately, I’m reconnecting with my prior projects, and I’m feeling great about them. Especially the Autistic Employment Hacks stuff.
Note to self: It’s perfectly fine to take 3 months off those all-consuming projects. You’ll come back around, eventually. And you’ll pick up where you left off. Just don’t delete the “unnecessary” website!
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 am not looking forward to going to work today. I worked from home all week, last week, and it was wonderful. I didn’t move as much as I should have, and I ate more than was healthy, but I got to rest when I needed to, and I wasn’t subjected to inane interactions, like I’m about to be, in a little over an hour.
I detest vacuous social interactions that serve no purpose other than to make other people feel less lonely. It’s a distraction. But I’ll do it.
The good part is, I’ve figured out how to do it without investing a whole lot of energy. If I just follow this script, I’m all set.
This is how it goes:
First, I see someone approaching me. It’s always best if I acknowledge them first, because other people are very reactive. They like having someone else set the tone of the interaction so they can just follow along.
Me (smiling and looking in their general direction): Hi! How are you today?
Them: I’m good, thanks! And you?
Me: I’m great! How was your weekend? Did you have a good one?
Me (whatever they happen to say): Oh, I know… Right?
Them: Laugh / meaningful look / some comment
Me: Tell me about it…
Them: Okay, well, have a great day!
Me: You too! Happy Monday!
And we’re done. That’s roughly how it goes.
Generally, I can get away with a few exaggerated expressions of “Oh, I know!” or “Right?!” that indicate I’m listening (maybe I am, maybe I’m not), and that I care. I do care. I actually do. But it’s a lot of energy, which I often don’t have, to get all invested in other people’s lives.
Especially when I fundamentally disagree with what they do with their free time and money.
I try not to belabor my interactions with judgment. Non-autistic people don’t understand, and it’s not a good use of time.
So, anyway, Monday awaits. I have to go in to the office today — Big Day for a project I’m working on, plus there’s some staff meeting I have to attend. Whatever happens, it won’t be boring. That’s for sure.