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.
I’ve been on pretty much of an emotional roller-coaster at work.
Everybody has been so busy, and there are a lot of changes going on. And we’re all pretty much at our wits’ end.
I was on a call with a co-worker, this afternoon, and he was giving me tips on not burning out, not taking on too much, how to delegate to others. He was talking about tips he’d given one of our fellow co-workers, and as he was explaining, he said, “I love B___________, I love all you guys, I really do. And I want to help make your lives easier. That’s all.”
At first, I was a little taken aback. I’m old-fashioned, I know, with a whole lot of working history that’s trained me to keep a professional distance from everyone, including my co-workers. But then I thought about it, and I realized that that’s something I say all the time, too. “I love you guys… I love them… I love _______.”
And that’s just how we talk to and about each other at work.
Plus, it’s how I’ve talked about my co-workers many times in the past. With love. About love. For love.
Despite all my complaining about my job and the hassles and the pain and suffering that comes with it, there’s still a lot of love there. For others. From others. Even the people who drive me to distraction and keep me up at night with their political shenanigans… I love them, too. And they love me.
That’s something you don’t find everywhere — especially the company of people who get that and reciprocate and who make it easy to talk that way. At work.
So, I’m feeling pretty positive, right now. Of course, it helps that I had a little nap after work, and I have three days off. But even so, there are worse things than working with people who feel as loving towards you, as you do towards them.
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:
Oh, lord… I’ve been caught up in that high-tech mythos that Everything You Do Has To Have Global Impact, or it just doesn’t matter.
Huh. How ’bout that. I’ve been thinking a lot about how my life has unfolded, and I’ve been feeling badly that I haven’t Made A Global Impact, the way we’re expected to do, these days.
No matter what we do, these days, we’re supposed to Go Big. Especially online.
We’re supposed to “generate content” that gets lots of views / likes / responses.
We’re supposed to “engage” on a global scale, and that’s allegedly going to change things.
We’re supposed to Go Big Or Go Home. And anyone who doesn’t aim for BIGness is a liability and a drain.
Huh. How ’bout that.
As it turns out, even after being in high tech for 25+ years, I’m deeply skeptical of the whole promise around dramatic, lasting global change. If anything, I’ve become more skeptical. Yes, it’s possible to have a global impact. And yes, it is possible to really make a huge difference in the world. But will it last? Will it have the intended results? It’s still too early to tell.
Plus, the way we measure what does and doesn’t matter seems pretty much based on numbers linked to volume (views, likes, sales, etc), and that doesn’t actually show us what kind of impact we really have in the world, qualitatively speaking.
See, the difference I want to make is about quality, not quantity. I don’t want to have to worry about volume of likes and views and shares and whatnot. I just want to do what I do, and have it make a difference. I want to do something constructive, every single day, and see the tangible results of my work.
I also need to provide for myself, pay the bills, and keep the money coming in, so I don’t end up living on the street (that happened to me years ago, and once is enough for one lifetime, thank you very much). That’s been a huge concern of mine. But I just ran the numbers for the trajectory of my financial situation, and it looks like I’m actually going to be in good shape, provided things stay relatively stable over the long-term. The big opportunity for me are the years between when my house is paid off in another 12 years, and when I am slated to retire, another 10 years after that. Once my mortgage is taken care of, I’ll be able to save most of what I earn, and I’ll be doing that pretty aggressively.
Of course, all this is assuming that I continue to be employed… that I can keep earning at an acceptable rate. But honestly, since I’m a little on the low end, earnings-wise, I’m a bargain. So, I get to keep my job. It’s easy to price yourself out of the global job market. Don’t want to do that.
But it’s not just about money. One of the key ingredients of my ongoing employment is making a substantive, positive difference in people’s lives on a daily basis. If I contribute to the well-being and success of people I work with on the job, they have incentive to keep me around, and even advocate for me. Making a constructive difference means I’m contributing. It means I’m integrated into the ecosystem I’m operating in. It means there’s a reason for people to keep me on.
And this is where being Autistic keeps things interesting. See, I didn’t even realize all this until somewhat recently. I’ve been in the everyday workforce for 30 years, and it took me this long to comprehend all this. I mean, intellectually, I understood the principle of making yourself useful and contributing. But it hadn’t really sunk in about how my day job fits that focus in my overall life. I strive to help people I meet outside of work — but helping people on the job? That was of no interest to me, quite frankly. If anything, other people were an intrusion and a drain to be avoided at all costs.
For so many years, I treated my day job as just that — a job, a way to make money to fund the things outside it — the things that really mattered. I wasn’t interested in getting invested in the relationships with people I worked with, because I just didn’t see myself as part of it all. I was too cut off, too separate, too intent on protecting myself and making sure I had what I needed, regardless of how that impacted others.
But now, I realize that what really matters to me, is living in a comprehensively connected way, finding paths to contribute and be a part of something bigger than myself. While I’ve never before considered my job worthy of full investment, now that’s totally changed. It was partly because I was so busy managing my Autistic issues without having a full understanding and appreciation of them, how they impacted me, what impacted them, and so forth. I didn’t have a whole lot of bandwidth to get personally invested in what was going on — especially because so many jobs I’ve had involved long commutes and really tough environments which were loud and open and constantly challenging.
Now, however, I have a job where I can work from home whenever I need to. That means I can often take a nap when I need one. And I get a break from the busy-ness at the office. I don’t have to drive in rush hour traffic. I don’t have to constantly make eye contact and figure out social interactions. I can relax… Even lie down, if I need to, while I read and answer emails on my mobile phone.
And that makes all the difference.
I can take care of myself. And I can take care of my work, my relationships, my future. The thing, too, is that I notice that others I work with are doing better when aren’t stuck in the office 5 days a week, as well. I find that people who work really effectively in a remote environment can be more mature, better at managing their time, more motivated, and more adept at building and sustaining relationships than people who have to be at an office to do their jobs. So, the types of people I’m working with are also more compatible with me.
It’s a win. For everyone. Especially me.
So, while I’ve been feeling a little “slacker-like” for not having turned the world upside-down with my dramatic innovations and whatnot, I’m finding that I’m much happier just tooling right along, taking care of myself, taking care of my relationships, taking the pressure off. Just living my life… Doing something meaningful each day, wherever I am, whatever I’m doing.
It all matters. It’s all connected. And after so many years of stress and strain, I’m finally really getting it on a deeply felt level.
And that’s a good thing. A very good thing, indeed.
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.
It’s #AutismAwarenessMonth, and I’m already tired. Ha! Of course I am. Sheesh, the ongoing … onslaught… of misinformation, disinformation, and all these otherwise unaffected-by-Autism people weighing in with their observations… it all gets to be too much.
And yet, I can’t seem to look away. It’s like a train wreck. All month long. And it’s only the 4th of April. Good grief.
One of the really depleting things about this month, is that I become all the more aware of how much more difficult my life has been, because I had no idea about how being Autistic was affecting me, or what to do about it. I spent so, so many years struggling, not knowing what the deal was with me, not understanding that there was literally something distinctly different about me that put me at a disadvantage in some ways (and at an advantage in others). It wasn’t luck or happenstance. It was a structural difference in my makeup that set me apart and introduced specific challenges to me.
I had no idea. I had no awareness. So, I couldn’t manage my situation. I couldn’t adjust. I couldn’t find any patterns, because my mind was so turned around by everything that I didn’t know what patterns to look for. I couldn’t tease out the differences from one day to the next, and did that ever have an impact.
Well, that being said, now I know better. And now I can do better. True, I did not manage to finish college (despite earning 90 credits). Too much going on. Too much to overcome. Too little information on one and, and too much on the other. It’s rarely actually been a huge problem. With a few exceptions, where my advancement opportunities were limited because I didn’t have a degree, I’ve always managed to find good-paying work that let me make the most of my abilities. I have a “nose” for opportunity, and I’m really proactive and a dedicated team player, so I’ve always had that to fall back on.
But now I’m getting older, employers are relying on web-based resume intake systems, and without a degree, I can’t even get pasts the “electronic gatekeepers” to make my case for getting the job. Plus, if I want to change careers, which I’m thinking about doing, after 25+ years in high tech, I need a degree. Because taking credit for building out key features of a leading financial services website and optimizing technology just doesn’t have the same cachet outside this gilded cage of high tech.
I need something else to fall back on.
I’ve been looking for degree completion programs for years, but none of them were accessible for me. Either they were too expensive, or they were too time-consuming and the pace was dictated by the institution. I was expected to carry a consistent courseload for two years straight, which — if you’re me — is a clear warning shot across the proverbial bow. There’s no way I can commit to that workload with absolute certainty.
Can we say meltdown? ‘Cause that’s where I’d be — probably frequently — while scrambling to keep up / catch up. Call it Executive Function issues. Call it inconsistency. Call it what you will. It’d wreck me, for sure, what with my full-time job, caring for my dependent partner, serving on town boards, keeping my own interests alive, and keeping myself healthy and fit… on top of a degree completion program.
But I believe I’ve found a solution. I found a program that’s self-paced, that gives me credit for what I’ve done, and it lets me earn a degree in what I’ve been doing for the past 25 years. And it costs a fraction of what a traditional degree completion program would cost.
I’m a grown-up, with adult responsibilities and a full life. And I’m Autistic. So, I need to choose and act accordingly. I need to be constantly aware of my strengths and my limitations, to accommodate myself and not take things for granted. I took so much for granted, when I was younger, thinking that if I just kept pressing on in the same ways, I’d be able to eventually succeed. But I was doing things the way I saw all the neurotypical people in the world doing it. I tried to mimic what they did, and how they did it, assuming that I could just power through.
Untrue. I burned myself out, over and over. I overloaded myself, pushed myself to one meltdown after another, drank too much, got pulled into the wrong crowds, took the wrong jobs, stuck with the wrong schedule, and I got hurt. I crushed myself. And that was no good.
Now, I actually have a chance to turn this around, and that’s what I’m doing. I started the exploration process a couple of weeks ago, and I started the application process last week. I’ll work on my application some more today, since I have some time. And I’ll gear up for this process, the start of this new journey, with my limits clearly in mind.
It’s not that I’m going to let my limitations define me. Far from it. I’m just going to factor them in and manage them accordingly. If I know about my limits, and I know how they block me, it’s up to me to figure out how to either adapt or avoid them. If I’m in a position to actually do something about my situation (and I am), it’s up to me to handle things properly.
If my energy levels are dropping, I need to step away and recharge — and then bring myself back on point in the future.
If I’m getting overwhelmed, I need to step away and take steps to get myself un-maxed-out again… then resume what I was doing before.
If I’m able to work faster than the “norm”, then I need to kick it into high gear, because at some point, I may need to slow down. So, I have to plan and act accordingly, so I can keep ahead of things and make the most of my up-times to offset my down-times.
And so, I shall. With Autism in mind. Awareness. Acceptance. And action.
This next step (going back to school) has been a long time coming. I’m gonna make the most of it.
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.
The snow is finally melting, in my corner of the world. It’s warm today, 50°F and 10°C, and it’s raining a little bit. Mist is rising up from the snowbanks as they melt and evaporate. The process always fascinates me, because it seems like it should take more energy or more heat to turn water into steam. And yet, here we are, surrounded by fog.
I’m so glad it’s Friday. It has been a really long week, and everybody I talk to at work feels the same way. We are all very happy the work week is nearly over, and since this is Easter weekend, a lot of people have even more time off. So, that’s good. Things should be pretty quiet today, especially this afternoon, so that means I can concentrate on my work without distraction. I might even get into my zone, if all goes well.
I’ve been thinking about how being autistic has helped me over the years. With Autism Awareness Week, the theme seems to be, how many people have been left behind and are not being helped as they struggle through life. I’ve had plenty of struggles, myself, and being denied a diagnosis for years really complicated things in my mind. However, objectively speaking, Autism has also been a huge advantage for me. And not necessarily in ways you would expect.
One of the biggest and most helpful ways, is how it makes me pretty much oblivious to what other people think of me. Now, in some cases, that is a real drawback. It doesn’t help me when I am in touchy social situations where I need to read people properly to get by. It also didn’t help when I was growing up and all the other kids were sending out magical signals about what they did and did not like, what they would and would not tolerate. I was persona non Grata a bunch of times throughout my childhood, and that really hurt.
On the other hand, now that I look back, I see that being on the outside didn’t actually stunt me the way you might think. It didn’t ruin my ability to bounce back, didn’t keep me from becoming resilient. In fact, being on the outside taught me many important lessons, and it really became an advantage for me. Because those experiences taught me how it feels to be on the outside, which I would never want to make another person feel. It made me a lot more sensitive to differences in the want more excepting of limitations, all of which have helped me connect better with the world around me.
Plus, I was really, truly happy being by myself, and I took so much obvious pleasure in the things I was interested in, and I devised a way of life that worked for me, so other people were intrigued, and they actually responded favorably to me after a while.
In fact, over the years, my outsider status has often worked in my favor. I have been outside the “in group” More than I have been on the inside, but because I’m actually fine with it and I seem happy and content and fulfilled in it, it piques the interest of others who want to enjoy life the way I do. They see me enjoying myself, being happy, being content, and they want to know what all the excitement about. I will happily share what fascinates me, any old time, and one thing I seem to have learned from my autistic grandfather, is how to translate my passion into excitement for other people. So, my geeky nerdy obsessions with obscure stuff really truly helps bridge gaps between me and others. Anybody who’s looking for a little tidbit of trivia they can use to impress people a cocktail parties is welcome to ask me for my input. Invariably, I can find something they can use later to improve their social status.
Everybody wants to be happy, everybody wants to be accepted, everybody wants to feel like they belong. It never really mattered to me that I didn’t belong to certain groups, or that I was not the most popular kid in the class or at work or in town. What did matter to me, was that other people felt welcome, appreciated, even loved, when they were around me. I learned how to transfer my sensitivity about being left out along with my deep interest in life, other people, and how things work to the social scene around me. And because I was Autistic and could not read negative reactions from people, I found myself able to be open to others in ways that most people can’t.
I can’t emphasize enough how helpful this has been. Alexithymia, or the inability to sense emotions, has actually worked in my favor, in that I have defaulted to openness and acceptance, if I needed to fill in any blanks about what people thought about me. In fact, there have been many, many times when other people have approached me with anger, judgment, aggression, or other negative emotions, and because I could not sense them, I just assumed they were friendly, and I treated them as such.
The amazing thing is, those other people backed off their negativity and took my positive lead. They realized that I was not intimidated by them, I was not put off by their behavior, I was not going to fight with them or stir up more trouble, and I really just wanted to interact with them like decent human beings. Because I had a better and frankly more enjoyable solution to the dynamic, they followed my lead.
I sincerely doubt any of that would have been possible if I were neurotypical. If I were able to read the aggression the other people feel, if I were able to respond to their emotional state with a response like what they were putting out towards me, I’m sure my life would’ve become very different and taken many darker turns. But the fact of the matter is, people look for leaders, and they look for better solutions in life. And if you lead them in a way that steers them away from their bad behaviar, on an individual basis, In personal encounters, change can actually happen.
Of course, I can’t speak to systemic inequities, as well as racism, classism, bigotry, and all the other isms that drive modern human behavior. Those are larger, more complex issues that deserve a deeper discussion. But in my own personal life, I have found that Autism actually gives me an advantage when it comes to dealing with people. Provided that I take the lead and I set the tone, really positive changes can happen whenever I encounter people who could potentially be a problem.
It’s not for everybody, and not everybody has interest, or wants to develop the skill, but I can tell you that it works. I can also tell you, I didn’t learn how to do this overnight. I didn’t magically receive divine dispensation of this glorious secret. The set of skills was hard-won over many decades of trial and error. But right now, in my current life, it works for me.