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.
Ever since I was a kid, I knew I didn’t want to live like my parents lived. I didn’t like their friends, I didn’t like their values, I didn’t like how they behaved, I didn’t like their life choices. Everything — from food to clothing to how we worked (we did a lot of that) to what we did in our free time — was at odds with what I wanted for myself.
I didn’t want to eat their greasy, fatty, carb-filled meals at 7:15, Noon, and 5:30, that left me feeling worn out… and tied my gut up in anguished knots of pain every single day. I wanted to eat a leisurely continental breakfast, followed by a mid-morning snack (second breakfast!), a light lunch, a mind-afternoon munch, and then a solid dinner, preferably late in the evening (Spanish style).
I didn’t want to “rough it” camping in campgrounds with bathhouses that reeked of disinfectant and bug spray… going on long hikes with loud gangs of people, in the process getting all sweaty and covered in bug bites and various scratch organic matter… sleeping on the ground in a tent that didn’t keep out the noise or the mosquitoes. I wanted to spend my days on a university campus, preferably in the library, reading… studying… writing… and taking solitary walks through the silent woods or along an isolated beach.
I wanted to be free. Free of their small-minded limits. Free of their food choices. Free of their priorities. Free of their roughness. Free of their fear.
And my ticket to freedom was work. Getting jobs that would pay me enough that I could do what I wanted, when I wanted, how I wanted, as much (or as little) as I wanted. Getting out in the world and finding out how other people lived their lives. Coming up with my own ways of doing things, based on what I learned from others.
I left home at 18, going off to college in a state that bordered Canada, which had heavy Canadian influence. Most of the television, radio, and news were Canadian. This was in the early 1980, before there was cable and internet and DVDs and whatnot. The world was much bigger then, and it was easier to get away.
So, I got away. I took off and got the hell out of there. I was going to school out-of-state, and because I’d gone directly against my parents’ wishes, my parents cut me off financially. They wanted me to go to the Christian college they’d both graduated from, because then I could get a scholarship – a kind of family discount – but there was no way I was doing that. You had to sign a “morality agreement” saying you wouldn’t do certain things. But everything I actually wanted to do in college was on that agreement — drinking, smoking, dancing, loud rock music (a-la big-hair 80s guitar bands — rock on!) So, yeah, ix-nay on that college choice.
Because I went out-of-state (I couldn’t get away fast enough), I paid higher tuition. Now, mind you, that means I paid $8,500 a semester, versus $25,000 — times have changed — but when you have limited funds, and your family has cut you off, that’s a lot of money for an 18-year-old to come up with.
But I did it. I shopped my typing skills around, making extra money re-typing bought papers for my peers, who didn’t feel like writing them, themselves. I tutored a local kid in German. I did work-study programs during the school year and over the summer. I worked it out so I could stay in-state for the summer between freshman and sophomore year to get my state residency and get lower tuition the following three years. It worked.
Unfortunately, I got myself in a bit of trouble over that summer. And the following year was pretty rough, with me dealing with police and the law and a stalker. But again, the thing that saved me was finding work. I went to Germany for a “semester abroad” and liked it so much, I got a job with an American translator and was able to pay my way to stay a full 2 years.
I did get extra help from friends, who paid for more dinners than I could count. I generally paid for my breakfast and lunch — which cost next to nothing for students, in those days. I could get a full lunch meal for less than $2.00, so long as I wasn’t picky about what went into the “Eintopf” — a stewed mix of whatever was leftover from the day before. I had to eat. I didn’t have the luxury of picking and choosing. And the dinners I made for myself were vegetarian, because meat was expensive, and I could get all the nutrients I needed from veggies and rice.
When I reached the end of my 4 years of college, I was out of money and out of options. I didn’t have a degree, yet, because I had lost touch with my home university and didn’t pay close attention to the requirements. I didn’t care about academic requirements! I was an artist! A writer. I was going to write novels and poetry. What good would a math class do me?
Back in the 1980s, you could still get by without a college degree, so I went back to the United States and proceeded to figure stuff out. My life was a lot more complicated and messy than I can describe here, but the one thing that kept me going through it all was work. Having a job. Having a regular income. No matter how screwed up I was, or how messed up my choices were, or how much life seem stacked against me (in terms of crippling chronic pain and coming out as a lesbian in the days when even saying the word “lesbian” out loud could get you beaten up, fired, or cast out of your circle of once-cozy friends)… as long as I had a job, I had choices. I had freedom. I could move. I could grow. I could make art. I could write.
As long as I had a job and kept working with a steady income, I was good.
And I knew that as well as anyone. I’d worked since I was 12 and had a paper route. I’d worked tons of sh*tty jobs in back kitchens of restaurants, at nurseries transplanting hundreds of tomato seedlings (I got paid per piece), delivering meals and meds at a nursing home, and I’d supported myself a number of ways through various illicit activities (selling speed out of my locker and procuring booze for classmates in high school , for example, as well as retyping contraband papers in college). No matter how crappy the job was, every single one taught me something. And I learned as I went.
Work was my ticket to independence, to creating my own safe Autistic haven from the non-autistic world. The money I made allowed me to make choices with how I was going to live, where I was going to live, what I was going to do with my free time, and if I had free time at all.
So, I was super-motivated to always have a job. No matter what, I always had a job. Working full-time, whenever possible. More, if possible. And I’ve typically worked extra gigs on the side, even while working full-time. This has been going on for 30 years, and I’ve never, ever been under-employed. If anything, I’ve been over-employed, with barely any time left to just catch my breath. But that’s my choice. That’s by design. And it’s worked for me.
I mean, look at me — virtually, of course, since you can’t actually see into my life, right now. I live in a 2100 square foot garrison colonial house in one of the most affluent towns in my county, with woods surrounding me and an amazing view of the western mountains from the front of the house. I’ve got to cars in my garage (well, one’s in the shop right now, but it will be back this coming week). I sit on a town board and participate regularly in my town’s government. I used to volunteer at a local botanical garden (till my life got too busy). I have a 6 month financial safety net in the bank, and this month I get two bonuses from work that will allow me to renovate two of the bathrooms in this house.
I’m presently sitting on a nice burgundy colored sofa with a cushy, soft grey pillow behind my back, with my favorite Samurai-design mug of coffee on the t.v. table to my right. Beside it is a ripe banana that looks really tasty, and beneath it is a woven place mat with a folded paper napkin beside it. To my left is my mobile phone, which is playing my favorite tunes, a full box of tissues, a pile of comfy, cozy blankets I can wrap around me if I get cold. Across the room is the fireplace which is built from cobblestones retrieved from a historic district in Boston. You can see chips in the stone where horse-shoes probably struck them.
I’m surrounded by comfort — the two Amish-made rocking chairs in front of the fireplace with an engraved copper coffee table my aunt brought back from Africa between then. Lovely rugs on the floor, a basket filled with Christmas cards from friends and family, an entertainment center with t.v., DVD player, VCR, and cable box… and many, many knicknacks my partner and I have collected over the years. To my right is a bookshelf full of books and papers, and the desk and main computer & printer we use for all-purpose activities. And across the room, the bay window looks out on a woodlot where firs and hardwoods sway in the wind, as hawks circle and call to each other overhead. Upstairs, my partner of 27 years is fast asleep. Later, she’ll get up, and we’ll touch up her graying roots with a “touchup kit”. I’ll do a bit of work for my day job. And I’ll take care of some other stuff for another business we have together.
I’m not listing all my blessings to make anyone jealous. For every nice thing I have, there’s been a lot of pain I’ve endured. But I am listing all these great things to make a point.
Keeping working with a steady income made all this possible. If I hadn’t been able to keep working, very little of this would be possible.
By no means am I vastly wealthy. Far from it. But because I’ve had steady work — a steady income — all this is now possible. It’s been a long and winding road, and to date (over the past 30 years), I’ve had something like 20 employers. Some of them (temporary employment agencies) were simultaneous. That was by design, because I couldn’t afford to be out of work. At all. If I had to sign up with three different agencies and play them off against each other, that’s what I did. And worked for me. Looking around at my life now, I can see just how well it worked.
Personally, I think people are really messed up about work, these days. Everybody seems to think you need to find a career and stick with that, from Day One. Er, not exactly. I’ve had four distinct “careers” in the last 30 years, and they all just happened organically. I learned different things at each job, and then I applied what I’d learned to the next one… and the next one… and the next one.
To say that my parents were horrified by my… meandering “career path” would be an understatement. I can’t even count the times they openly despaired of my future — usually in front of other people, so they could vindicate themselves and avoid public shaming.
But you know what? It worked for me. And although my future is far from guaranteed, I am a heck of a lot happier than most people I know, I have a life that really, truly works for little ol’ Autistic me, and I have the things I value most in life — Books, books, and more books… and the leisure time to read them, write, and truly enjoy myself.
Because I kept working. When one job didn’t work out (and there have been lots of them), I moved on. I cut my losses, learned my lessons, learned to portray it to others in a light that made me look like an opportunity-seeking winner, not a loser fleeing my last failure in a long string of screw-ups. I learned how to work the system and find exactly what worked for me. I didn’t hang around longer than I had to, if things got sour. And I never shed a tear about moving on. As a matter of fact, I’ve been actively interviewing for other jobs, so I can keep my hand in the game. I actually turned down a really great offer at the end of last year (because I could), and I have another interview on Monday, which I’ll probably ace, but plan to turn down, because their schedule requirements already look like they suck, compared to what I’m doing now.
Most people I know would get a little green around the gills, if they followed my path. It’s not for everyone. The point is, it works for me. And it’s paid off in some very big ways.
It boils down to the following set of non-negotiable rules I have for myself:
Always work. Never don’thave a job. Keep the income coming in. If possible, get more income coming in. If your day job doesn’t fulfill you, pursue your passion on the side and let that fill in the blanks of your spirit.
Never, ever talk disparagingly about past work experiences, but emphasize the positives. Always look for the benefits and things that other people value, and emphasize them.
And whatever you do, always, always, always work. I don’t care if it’s a crappy temp job shuffling papers for personal injury attorney — I did that for a while, and it was horrible, every single day, but I still showed up and did my best. Even if it’s a seasonal gig selling Christmas trees or lemonade on the corner… even if it’s delivering newpapers or putting flyers on people’s windshields at the mall… always, always, always work. Even if it doesn’t suit you. Even if it’s exhausting. Even if it’s demeaning. Doing shitty work is required, if there’s no other work to be found.
That’s been my secret. Tolerating awfulness and learning from it. Turning it into something better, on down the line. Not getting stuck in lost causes or beating myself up because things didn’t work out. I experience, I learn, I transform, I move on. And I move up. Because I can. And lots of other people can, too.
These days, it seems like everybody has such high expectations from the workplace. Careers. Professions. And so forth. You get out of college, and it’s all supposed to be set up for you (Pro Tip: it’s not, by the way). On the other hand, some of us have to work our way up in the world. And I’ve observed tha those of us who do, who have all those rough experiences we learn from, are worlds ahead of the rest of the entitled set-up crowd, when it comes to long-term prospects… not to mention general happiness and satisfaction with our work and life situation.
When you’ve slogged through the muck, you appreciate and value the clean, well-lighted places like they’re your ever-renewing lease on life life.
Because they are.
So, that’s my riff on working while Autistic. There’s plenty more to say, but I’ve gotta go get some things done in my own clean, well-lighted sanctuary.
All kinds of feisty, racing around, slamming into each other… the cops are out en force, and I’ve seen plenty of people pulled over, sometimes with lots of extra emergency vehicles around them.
Traffic on the way home was crazy tonight, with people flying all up in each others’ tail-lights, beeping, roaring… you name it. And this is even more than usual.
Something must be up in the world.
But you know what? It’s been 2 days since I looked at the news, and I have no idea what bees might be in their bonnets. Nor do I care. I mean, I care, but not so much that I’m willing to sacrifice my own well-being for others.
And I realize, that’s what I’ve been doing, lo, these many years that I’ve been paying attention to what other people do in the public arena. What a poor use of time. It’s useful to keep in touch with who votes in my favor, and it’s a good idea to participate in positive change. But all this other… crap that’s all over the news… yeah, it just doesn’t make sense to follow any of it.
Especially when nothing really seems to change much, even after all the upheaval and drama. There are so many other more constructive uses for my time and energy, than “following” the antics of people who are all into the drama for drama’s sake.
Me? I want to actually accomplish something.
So, I do. I’ve been reading a lot, lately. Spending far less time online. Chillin’. And it’s good.
Have a lovely evening — or day, if you’re reading this in the morning.
This is going to sound strange, but it’s actually easier for me, when people aren’t nice to me.
When they don’t say and do nice things for me, befriending me, and so forth.
I find it confusing. And the reciprocity thing makes my head feel like it’s spinning.
And I’m going to get it wrong.
Either I’ll get too close, too fast, or I’ll keep my distance when I’m not supposed to.
They’ll expect me to hug them. And that’s no good. I’m a terrible hugger, objectively speaking. I don’t know how to get the right pressure, and I always seem to dig my chin into the other person’s shoulder, which is a weirdly intimate thing to do, when I think about it.
They will say things and expect me to respond in kind. But my brain doesn’t work at their same speed, so I’ll end up saying something stupid or coarse or reflexive that’s unconsciously meant to push them away.
It’s better, if people aren’t nice to me.
That’s not to say I don’t like people. I do! I really enjoy their company, and I like to spend time chatting about things that interest us. Even the dreaded small-talk is fun for me, at times. Banter. Witty banter. Laughs. Ha-ha-ha. 😀
But other than superficial fun times, I prefer that people are objective and a little cold towards me. Matter-of-fact. Because facts really matter a lot to me, and it’s more important for me to handle things in the correct manner, than it is for me to “exchange energies” with potentially needy others.
I don’t mind the chill. I prefer it, in fact.
Just don’t be rude.
Rudeness I cannot countenance. Standoffishness, yes. But rudeness, no.
I can understand why some thinkers are recluses. Heck, I’ve been a recluse, myself. Blogging is one of the few concessions I’ll make to being “social” about my work. Social media, to some extent, as well. But I’m not a big fan of running around, telling everyone about my work, what I’ve been doing, etc. Something about social interactions really sucks the life out of my thought process, especially when I’m working on an idea. And when the idea becomes fully formed — or formed enough to show up on the printed page after a bunch of rounds of edits — I’ve often moved on to the next Big Idea… and I’m thinking about that.
But of course, everybody wants to talk about that old idea that’s in my proverbial rear-view mirror. Stuff that’s new to them is “old hat” to me, and I can’t be bothered thinking about it, anymore.
I could never be in a band for that exact reason. Having to play the same songs, over and over — especially the songs that everybody else loves, because they’re familiar and they make them feel a certain special way. Ugh. How horrible. I could never do it. Same thing with ideas and books and whatnot. I don’t want to hang around chewing on the food for thought I masticated and swallowed days, weeks, months, and years ago. I’ve moved on.
So, I really do make a terrible 21st Century author. Writing and publishing have turned into such a promotion-intensive activity, over the past 40 years, which is a shame for writers like me. I’m just not all that keen on self-promotion. Plus, I really hate talking to other people about my work. It’s an internal process. Talking screws it up for me and messes up my thought process. And part of me thinks, if other people have to talk endlessly about an idea, they must not really get it, so why am I bothering talking endlessly about it with them?
How I long for the days when people could read something, reason through it themselves without needing constant conversation and reinforcement, and then draw their own conclusions without tapping the purported “wisdom of the herd”.
Ugh. How I hate that expression — “wisdom of the herd” (it hisses through my imagination as if the character Bubble from ‘AbFab’ were saying it). That combination of words defies logic, to my mind.
Well, anyway, I’m just venting. What was it I wanted to say? Oh, yeah — how glad I am, I’m not traveling to see my uber-autistic parents.
Don’t get me wrong. I do love my folks, and I enjoy much of the times I share with them. But I can do without their cluelessness about what it’s like to live in the non-autistic world as an autistic person, how exhausting it is, how dangerous it is, how confounding and thwarting it can be. Their surroundings are as autistic as autistic can be — and they make sure it stays that way. Everyone in their immediate circle is either neurodivergent or knows they’re outnumbered by neurodivergent folks, so they defer to them.
Autistic is the Normal of their world. Neurotypical is pathological. Ha! So there. They’ve got their black-and-white thinking, their strict routines (for everything), their rigidity and dogma, their sensory issues, their hyperverbalism, their very, very autistic mannerisms that stand out sharply in the world outside their enclave but are the most natural thing in the world within their protected sphere of influence. They have all the supports they need to live successful lives in that context, and they can’t imagine anyone wanting or needing to live any other way.
My two biological siblings — both autists extraordinaire (tho’ they don’t know it) — have recreated our parents’ lives to an uncanny degree. It’s a little creepy. But by my family’s standards, they’re wildly successful, fulfilling all the requirements of A Good Life. Meanwhile, my adopted sister and I are outside that paradigm, and we’re struggling. She’s on disability and hasn’t been able to work or do much of anything other than manage her pain for a number of years. My activities are quite constrained by, well, being constantly exhausted by the demands of my everyday life. Exhaustion and an intense life with a lot of personal demands, isn’t a great recipe for exploring all of life’s glorious variety — including packing in all the activities my autistic family does, church involvement, volunteering, intense social activity, etc. In my parents’ view, that means my sister and I are failing — not that we’re dealing with a more challenging set of circumstances and are actually more functional in significant ways than our siblings who didn’t “fall far from the tree”.
The ironic thing is, I wouldn’t mind being able to stick closer to the ways of my upbringing. But autism-centric society doesn’t always work in my favor. And the rigidity and routines that make life sweet for the auties and Aspies of my parents’ type make life absolutely miserable for me. Their arrangements are great for people in one “quadrant” of the autism spectrum, but they make life a living hell for folks who occupy a different space. And they’re so damn’ intransigent about it. Come to think of it, it reminds me a lot of how brittle and abrasive Autistic Twitter can get, sometimes.
Shades of my upbringing… and the reasons I moved away.
So, where was I… Oh, yeah. Bitching about my parents. My whole family, actually. Vent, vent, vent.
But really, venting is only part of what I want to do, here. I’m off work for the next week and a half, which is bliss. I will actually have time to do all the things that have had to wait, thanks to my exhaustion and general overwhelm. Glorious. How delightful. I’ll be able to clean out my study. I think I’ll do that right now. I’ll have time to connect my new computer (I got a second-hand $3,000 machine for $304, which delights me). I’ll have time to lie down and nap whenever I danged well like.
And no travel to family. Not a bit. None of the stress and strain of highways with holiday-addled drivers. No sleeping in strange beds and dealing with strange routines. No social overwhelm. No hugs and sudden contact from hyposensitive, sensory-seeking family members. No foods that make me ill. No noise, no scents, no sensory assaults. No causes for meltdown/shutdown. And no interpersonal drama, other than the occasional heated discussion with my partner about something we both care deeply about.
So, why wreck it with ruminating on my disconnects with my family? They’re autistic. I’m autistic. We love each other and hate certain things about each other. And of course, we’re all 100% correct in our assessments 😉 Ha! Such is life in an autistic family.
Spring is coming, eventually. I’ll see them then.
For now, it’s all about making sure I’m well cared-for in my own well-cared-for space.
Ugh. My familial disillusionment strikes again. I had hoped so much to be able to connect with my parents, this holiday season. I won’t be traveling to them, so I’ve been hoping we could interact with each other in a mutually satisfying way. I’ve been cherishing the idea that the distance will relieve me of some of the existential angst that used to push me to suicidal ideation this time of year… every . single . year . until I was nearly 50.
Yeah, I know I’m being unrealistic. Everybody’s bothered by family stuff, almost without exception. I know very few people who don’t have issues with their parents, who don’t carry some sort of painful “baggage” about their relationship, who aren’t haunted by unaccountable ghosts that seem to embed themselves in our sinews and make themselves known like so much arthritis when the weather turns cold. And when you’re autistic, family stuff gets even more… interesting. I’m no exception.
So, I’m all spun up about sh*t. And what, pray tell, is it about?
This morning, my father finally responded about a piece of writing I’d sent to him a few weeks ago, to see what he thought of it. He’s seen my writing before, and he hasn’t always had favorable reactions. He’s misunderstood a lot of what I’ve written and said over the years, and he’s lectured me on all sorts of non-issues that he got all worked up about.
I chalk it up to his own Aspergers… that clinical tone he takes, the critical eye he turns to things… he seems to think he’s doing me a favor by telling me where I’ve gone wrong. He doesn’t actually discuss my overall ideas. He looks at specifics, homes in on the things that he thinks are flawed, and then he tells me in detail what those things are… usually from his own dogmatic point of view.
Yeah… thank you, Aspergers. That whole big-picture thing isn’t a strength of his. My mom isn’t much help, either. She also homes in on a narrow slice of something I’ve written, she takes it out of context, and then she gets upset. She’s much more emotional than he is, and she’s been so beaten down by the rampant sexism in her world, that she has a hard time articulating exactly what’s bothering her.
And then I have two of them all twisted up about my work, when all I really wanted to do was share it with them so we could discuss some of the ideas I’ve been thinking really hard about. It’s generally a really tough situation for everyone, and I hate it every time it happens.
Part of their issue is that I don’t have a college degree. Both of my parents have Masters degrees, and my father used to teach at the college level. I’ve got a number of PhD-level academics/researchers in my family — some of them considerably younger than I — and the whole formal education thing is very big in my family. I still get little insinuating lectures from my parents about how inexplicable it is, that I never got my degree. I attended university for four years. I accumulated the debt. I did my time. But no degree. That just rankles them to no end… probably in no small part because of their Aspergers.
What they can’t seem to get their heads around is that my “issues” were severe and cumulative in college… to the point where I had a serious drinking problem, I was in trouble with the law, I’d “acquired” a stalker, and I literally couldn’t complete my coursework in a timely manner, so completing the whole gauntlet just wasn’t possible. They’ve always felt it was my fault. I just didn’t do a good job of… anything. I’ve embarrassed them. And what right do I have to write anything that sounds like I know what I’m talking about, when I’m clearly such a loser?
So, when I’m presumptuous enough as to write something for others’ consumption (they don’t know about this blog), they get all up in arms. Because they think the things I write about require years and years of study at accredited universities, to qualify to speak about them. If I haven’t done the coursework, I can’t use my voice. I’m not qualified. I’m not vetted. I’m just some upstart making noise. And I’m making noise in ways that might embarrass them, if other people find out. I’m making noise that embarrasses them simply by right of me making that noise. It has no order for them. It has no sense. Because I haven’t ticked all the boxes that tell the world I’m allowed to say the things I say.
And for this very reason, I am incredibly grateful that I’m not traveling to see them for Christmas. We were going to try to travel down, but… nah. It’s winter. Officially. There’s snow on the ground and too much traffic on the roads. Better to stick close to home, and just settle in with my books.
If you’re like me (not a white, heterosexual male, but still working in high tech in Massachusetts), you’ve probably been on the receiving end of a subtle form of discrimination that’s systemically ensured that a lot of us can’t get paid the same as white men with the same amount of experience and qualifications.
That discrimination is the standard-issue question, “So, what are you earning in your current position?”
It might not seem so horrible, but if you consider that a lot of minority folks start out at lower rates of earning, then over all the years of moving on, if we’ve been compensated at roughly the same rate we were before, we’ll inevitably end up making less than our majority counterparts — some of us significantly less. I know that Salary.com shows I’m making 15-20% less than my market value, and that burns. But up till now, I haven’t been able to do anything about it, because employers have always copped out by using my prior earnings as a reference point.
But that’s about to change — well, in another 7 months.
This law is supposed to even the playing field, in terms of compensation. The part(s) of it I like the most are:
(c) It shall be an unlawful practice for an employer to: (1) require, as a condition of employment, that an employee refrain from inquiring about, discussing or disclosing information about either the employee’s own wages, or about any other employee’s wages. Nothing in this subsection shall obligate an employer to disclose an employee’s wages to another employee or a third party; (2) seek the wage or salary history of a prospective employee from the prospective employee or a current or former employer or to require that a prospective employee’s prior wage or salary history meet certain criteria; provided, however, that: (i) if a prospective employee has voluntarily disclosed such information, a prospective employer may confirm prior wages or salary or permit a prospective employee to confirm prior wages or salary; and (ii) a prospective employer may seek or confirm a prospective employee’s wage or salary history after an offer of employment with compensation has been negotiated and made to the prospective employee;
That means, I can ask what potential employers are paying others who do my same job. And they aren’t allowed to ask me what I was making before.
So, that means I’ll be free to change jobs next year, without worrying that I’ll be blocked in by my past. It’s been a rigged game against me and others like me for far too long, and now that’s changing.
Who knows how much it will fix, but in any case, at least that’s one less thing I need to contend with. Being a 50-something high tech veteran is challenging enough in this youth-loving world. I can use all the help I can get. Plus, it will be nice to get paid the market rate.
Oh, my heavens. It’s Friday, which is both good and bad. I have a huge deadline tomorrow morning — we’re launching an application at work that’s at the center of a huge political battle. And I’ve been in the thick of it for about a year, now.
When I think about it, it’s pretty amazing that I’m still functioning. This project has torn the living crap out of me and lots of people who worked on it. The main problem is the politics behind it — four six different bosses from three different countries, all at cross-purposes, all using those of us “in the trenches” as cannon fodder to build their empires.
And meanwhile, all we’ve really wanted to do was get the job done. Just get the work finished to our satisfaction and the best of our abilities. The project had to be done. It’s replacing a couple of other software applications that have kept people from doing their jobs for years. Those old apps have made a lot of people miserable / mad / frustrated / apoplectic (me included). So, replacing them with a single “solution” just makes sense.
It’s been expensive. It’s been demanding. It’s been extremely detailed and time-consuming. But it had to get done.
And we were all prepared to do it. We were ready to do it. To make the concessions. To compromise. To collaborate. To do what needed to be done. And we’ve done exactly that.
No thanks to our bosses. If anything, they’ve been the blocking factors. They’ve been the ones who have been making everything harder and more complicated than need be. They all want to hang onto their power and influence and make sure they have a place in the evolving world around us. But it’s been at the expense of the people actually doing the work.
Like me. And the other person doing a job similar to mine in another division, who’s been in lockstep with me, the whole way. She might actually be dying. She’s got COPD and a host of other health issues, and she’s been out sick a lot, over the past couple of months. She’s having surgery next week, and I’m not sure if she’s physically strong enough to survive it. Others on the project have been on extended sick leave, because the pressure was just too great. We’ve all been pushing forward. And the thing holding us back, has been “management”. The people in charge. Who see imminent success on the horizon, and all want to jump in and take credit for it.
Of course, we’ll just be pushed out of the way, as people who had nothing to do with any of it step in and start to crow about how they had a role in the success. While those of us who put on the proverbial brakes and kept people from making really bad decisions are pushed to the side and dismissed.
I just want it to be over with. And then I want to go on vacation for Thanksgiving week and not think about any of this. I won’t be able to, of course. Oh, sure, I can take vacation, but I won’t have all that time off. Partly, that’s okay, because getting this thing launched is pretty exciting, overall.
And when it’s live, it’ll be a thing of beauty.
But man, oh man, am I tired. Just fried. Over it.
And sick of everything.
Well, once this is all put to bed, with all the nagging details settled and accounted for, the next batch of tasks identified and prioritized, and the political wheels put in motion to get those things on the radar of somebody Very Important, I can step back catch my breath, and go back to living my life.
I just have to get through today in an orderly fashion and in one piece.
Then, tomorrow, I can dig in for a few hours in the morning… get this puppy launched… and get back to my life.
And do something other than work 12 hours a day for somebody else.
It’s been a very strange bunch of weeks. I’ve been on an emotional roller-coaster for reasons that aren’t immediately clear to me. I go through my days with a combination of logical efficiency and having to fight back tears.
Take a break… find an empty conference room and compose myself… Or put on my headphones and hunker down in my cubicle till the emotion passes.
Either that, or I’m flying along without a care in the world, dealing with whatever comes up with surprising alacrity and presence of mind.
Or I’m in a numb state of overwhelm that just doesn’t add up, because my life is no more overwhelming than it’s ever been. If anything, it’s less overwhelming, because I’ve cut back on the sheer volume of stuff I do on a daily basis.
Maybe that’s it… maybe I’m feeling the loss of my intense focus and drive. Maybe I’m suffering from a lack of mental activity. I know I do feel unchallenged in my daily life, and my greatest cognitive challenges are not losing my mind in the emotionally, sensorily vacuous political atmosphere I function in, each day.
Come to think of it, I probably have a lot of good reasons to feel sad and bereft — yeah, bereft is how I feel. I can’t list all the reasons here. At the same time, I have just as many reasons to feel positively bouyant… which I do. Back and forth the emotional pendulum swings…
And all the while, I know that things are happening that I should be feeling something about. Something… But I can’t muster it. I can’t summon the sensation. It holds back, it keeps its distance. It’s just not there for the taking, whenever I need it.
Which makes me look cool, chill, sometimes even cold.
I don’t want that. So, I feign emotional responses. A lot. Based on what I see others doing. I do a lot of mirroring and mimicking, these days. And yes, it’s exhausting. Because there’s no room for someone like me who doesn’t feel something on demand, and people distrust others who aren’t like them. And I work with people who are skittish to begin with, what with all the layoffs happening and organizational drama taking place.
In some ways, alexithymia really comes in handy. It keeps me out of the pit of despair that everybody gets sucked into. But then my empathy kicks in, and I co-experience other people’s dramas, without really knowing why. I don’t sense things in the same way, with the same cadence/regularity that others. So, I have the dubious honor of sharing their emotional states without really knowing why…
And yes, it is exhausting.
So, I curl up in bed at the end of the day and weep. For whatever reason. Reasons I can’t imagine, that I can’t fathom… but which show up, days, even weeks and months on down the line.
Oh…… So, that’s why I was so upset!
Always an adventure. Always.
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