Oh, Lord, the inside of my head sounds ungrateful, right about now. A still, small voice has gradually been getting louder and louder… bitching and complaining about the lack of routine in my days, this past week and a half. And that voice is eager to get back to the familiar routine of the everyday.
I can’t remember the last time I had nearly two weeks off for the end-of-year holidays. I don’t think I ever have. So, in some respects, it’s been blissful. No structure to strangulate my creativity, no outside demands (other than Christmas shopping and the odd errand) to cramp my style. I’ve been able to get up when I wanted, go to sleep when I wanted, pretty much nap whenever I please, and so forth.
Yeah, in many respects, it’s been delightful.
To just let time drift, without having any deadlines, without having any requirements, without coming down to the wire on something… it’s been glorious. My everyday life is structured pretty much around deadlines, due-dates, timelines, and so fort. It all feels so contrived to me. I have a different relationship with time than a lot of people, but that actually makes me more productive. I get more done in a few hours than a lot of people do in a week. But still, I absolutely hate deadlines and standard-issue definitions of time.
Not having that holding me back has been wonderful.
But in other ways, it’s been pretty hard.
The combination of lack of routine, plus unusual activities produced a couple of meltdowns — one in a bookstore bathroom, the other at home. And a handful of commitments I said I’d do, haven’t “materialized”. I’m using that word to get myself off the proverbial hook, because the failing hasn’t been due to some amorphous outside influence — it’s been all me.
And my need to just withdraw and shut down for a week.
Oh, the holidays are funny things. Not ha-ha funny, but weird and absurd in ways that make me laugh, for some reason. I’d been so looking forward to having nearly 2 weeks to get some things done that I’d been putting off… but once I got into holiday mode, it was like I skipped over to a parallel universe, where precious few of my interests or activities intersected with my original plans.
Parallels by definition don’t intersect, so there I was, on my separate track, looking askance at my best-laid plans… feeling faintly guilty… but not too much.
More than anything, I just wanted to be what and where I was — a normally highly efficient individual… free at last.
Which is all very interesting to me, because few things give me more satisfaction than getting things done, creating, building, producing.
And yet, there’s that intense need to NOT do any of those things, every now and then.
It’s like there’s this dynamic back-and-forth between the DOING and not-doing, that balances out my life. And considering how much I’ve been doing for months, now, I really needed that time of not-doing, to reset.
Which makes me really look forward to getting back to my regular routine.
Yeah, as much as I enjoy floating in some amorphous cloud of whatever-ness (and I do!), there’s still a big part of me that just loves-loves-loves my productivity. My predictability. My ability to Get Things Done. I love surrounding myself with the results of my work, and I love the process of getting to those results. I love having my set sequence of steps I follow to a “t”, with so much expertise, I don’t even really need to think about the steps. I just do them. Because I do them every single day, and they’re very much a part of me. Some days, it feels like they are me.
So, in a way, getting back to my routine will be getting back to myself.
And that will be good — every bit as good as taking time away.
It’s all a balance, in the end, a continuously alternating back-and-forth between two extremes. I’m autistic. I know all about extremes. And I also know how to make the most of them.
And for today, and the next day, and the next day, I shall.
Did you enjoy this? Please consider becoming a patron at Patreon.
I’m not going into the office today. Oh, no. Not today. It’s Monday. I’ll work, sure, but not in that damn’ office, in that damn’ cubicle, surrounded by those damn’ people. It’s much easier for me to do the sort of work I need to do, if I have peace and quiet and isolation. I’ve got some research to do. I can’t do that, with a steady stream of strangers stomping past my cubicle.
People ask me, sometimes, if I would ever disclose being autistic at work, so I can get accommodations. The answer is always “no”. I don’t expect my employer to offer me any accommodations, to be honest. The environment I work in is highly demanding, and they expect people to cover for themselves, not expect someone else to handle things for them. It’s a “tough luck” environment, where everybody — and I mean everybody — is expected to take care of themselves and not put additional strains on the existing infrastructure and overall team cohesiveness by expecting special treatment.
There’s a guy who’s missing an ear who simply puts a large bandage over one side of his head and goes about his regular business. The woman who worked in the cubicle before me died of lung cancer and refused to take time off while she was declining — until she was literally unable to work anymore. There are folks with significant physical disabilities walking the halls, and that’s just part of it. People show them consideration, but they don’t get a whole lot of special treatment. And autistic folks abound. We’re everywhere, at that place, but nobody actually ever mentions autism.
There aren’t a lot of official accommodations offered. I can’t get the fluorescent lights turned off over my cube, because that will short out the whole floor (according to Facilities). I don’t have a lot of control over the temperatures in the place. The scented diffuser in the restroom is non-negotiable. So, like everyone else, I have to fend for myself. Just like everyone else.
If you don’t like the noise in the space, you’re expected to put on noise-canceling headphones and concentrate harder. If you don’t like the temperature in the place, put on a sweater. Or wear something lighter. If you get overwhelmed by things, you’re expected to step away for a little while to unwind (a lot of people do that). If you have issues with sensory stuff, you’re expected to just roll with it, do what you need to do for yourself, and keep up. Just keep up. And when it all gets to be too much, you work from home. Like I’m doing today.
It might sound like a harsh environment (and in some ways it is), but the bottom line is, we’re all given the opportunity to manage our own situations…. Not throw the whole workplace into disarray because of a few unique requirements. We’re expected to be grown-up about things and arrange for what we need. Everybody’s got unique requirements, so rather than having the Overlords provide for your safety and comfort by official edict and codified guidelines, you’re afforded the right to determine your own conditions under the circumstances that everyone shares.
And I actually like that better than the formal accommodations thing. Because my needs change from day to day, and the help I need one day, might be “overkill” the next. This way, I just manage my own situation, and the work gets done.
So, today, that’s exactly what I’m doing. Managing my own situation.
I’ll make sure to get a nap this afternoon. I woke up tired, and I’ll be even more tired by this evening. I was out late last night, trying to see the aurora borealis in the northern sky. The plan didn’t work out. No northern lights were to be seen — just some brightness behind clouds in the distance. But it was fun to get out in the evening with my sweetie and just hang out.
The whole weekend was tiring, now that I think about it. I did a lot of non-standard hanging out. I wrote some pretty solid work both Saturday and Sunday mornings. On Saturday, I spent the afternoon visiting with a friend. Then on Sunday my partner and I went to see another friend compete in a dressage competition. Her horse is beautiful, and it was fun to get out to a different part of the world for a day. I was expecting a lot of moneyed people to be there, since dressage tends to be “high-end”. But there were just little groups of everyday people like me. And my partner got a chance to actually chat with other people, instead of being stuck with task-oriented me.
I know for a fact, I can be trying in those situations. I have a really hard time relaxing in public, especially when it’s a hot, bright, sunny day and I’m in a new and unfamiliar location. It’s just hard. So, it’s good for my partner to get to stop and chat with others, widen her world beyond my fretting about getting everything done in a specific order. Changes in routine can’t stop me from just living my life. Nor should they stop my partner from living her life, as well.
Yeah, it’s hard… so…? Everything worthwhile is hard for me. That just makes it worth more to me, when I manage to get it right.
But then, the exhaustion.
But then, the self-management. The self-accommodation.
I took naps, when I got home from both of my social outings. I just lay down in the bed and relaxed and slept. Then I did the usual — got up, made supper, ate supper.
Last night, I changed up my usual Sunday routine again, and we went out to see if the northern lights were going to show up as predicted.
They didn’t show up in the 90 minutes we were out there, and in the end, I got too tired and we had to come home. My partner was really disappointed. She’d wanted so much to see them with me. To share that experience. But the space weather didn’t comply. For me, it was good enough, just hanging out.
Now it’s Monday. I’m tired, but I’m happy.
And I’m going to take really good care of myself, today.
Heaven help me and Creator forgive me (I’m sure they will)… I’ve declined to attend my nephew’s wedding celebration in August. It’s the ultimate familial infraction, because this is the eldest son of my only biological sister… my first nephew… who acts and looks like a poster child for a Tony Attwood book. If there’s any wedding I “should” be attending, it’s his.
But I can’t. I just can’t. The recent 4-day trip to my in-laws laid me out with multiple meltdowns that trashed any semblance of self-esteem and confidence I had. Over a week later, I still haven’t recovered. It’s going to take weeks to get back to my regular self, my super-effective, balanced self. By the time I’m back, this next wedding will come ’round again. And then I’ll be laid out again — because my own extended biological family is even more kinetic and chaotic than my in-laws, and they are highly interactive. It’s just too much. All that sensory seeking drama … no, thank you.
So, I had to decline. Plus, I declined my other nephew’s wedding that’s happening this weekend, and if I’m not going to one’s, I’m not going to the others. It would be playing favorites, and I need to be an equal-opportunity offender.
Offender… whatever. I have to take care of myself and my little family. I just can’t put myself through it. And I’m not putting my partner through it again, either. There’s no way. I think she had an even harder time with my meltdowns, than I did (if that’s possible). And it’s going to take weeks, even months, for her to feel some sense of stability around me again.
I have to keep my priorities straight. So, yeah, I’ll suffer the displeasure and disapproval of my family. I’ll steel my nerves against their slings and arrows and guilt-inducing sighs… and I’ll keep to myself that weekend, as it should be.
I really love my nephew and his soon-to-be-wife. I’d love to be there. I just can’t deal with the melee. I look forward to spending time with them — away from the madding crowd. Far, far away from it.
At least I know I’m not alone. There are plenty of other autistic and highly sensitive people who get overwhelmed by this kind of stuff. And who have to opt out, because it’s just too much. The price is too high. The cost too dear. And the “return on the investment” is minimal.
… good feelings can be as overwhelming as the bad.
I can’t name my feelings. I don’t recognize them. Don’t know what they look like. … I like words that sound as they should feel.
… I want to experience life in neutral. Not feeling anything much. For me, the absence of sensation is better than experiencing anything too jarring, too unexpected, too new. I want to move through life with no sudden movements. Sameness is my anchor. I want each day to unfold quietly and predictably.
That pretty much says it all for me. Each word. Each line. I can relate.
Sameness is my anchor, too. And a wedding in August in an intensely humid mid-Atlantic state, surrounded by milling crowds of people… well, that rips up my mooring from the quiet cove where I’ve anchored and sends me adrift in a strong current that leads directly to a waterfall. Who knows where the waterfall will take me? I don’t want to find out.
And so, while everyone else in my family is flying / driving / taking the train in to these events, gathering in loud, tactile, bright throngs of milling relatives (many of whom I don’t recognize immediately, ’cause, well, face-blindness)… I’ll keep to myself, continue to nurse my wounds and get myself back on track. Keep myself away from the precipice of depression and despair. Get on with my life. Fish in my own little cove, while the rest of the world jumps in their inflatable raft and heads down the rapids.
The majority of people I hear talking about autism (from outside our community) seem to believe that autism is about being insensitive, non-empathetic, having no sense of others or the world around us, and being unable to relate. We’re “impermeable” to them — solid blocks of concrete that can’t let anything in.
We’re logical, because we don’t “get” the whole emotional thing. We make decisions with our heads, because our hearts are shriveled up, stunted, and like the Grinch, three sizes too small. We don’t have capacity for the “soft” sides of life, according to some — including leading researchers (who shall go unnamed, so I don’t give them any more visibility).
In a recent post, I proposed that our logic actually stems from the fact that, as autistic people, we are so sensitive — to physical sensations, as well as emotions and empathetic experiences — that we have to learn how to manage the flood of all that sensations that are constantly intruding on our experience… or else.
I know I’m not the only autistic individual who finds life a repeated assault on my senses, with my vision and hearing and sense of touch elevated… even while I tend to have very little sensation of balance and where my body is relation to the world around me, and other senses — like taste and smell and the feeling of striking something so hard I bruise — are subject to extreme variation.
On top of it all — what joy! (not) — the emotional floodgates unleash torrents of sensed experience that drag me from ecstatic highs to the deepest, darkest pits of extreme lows, sometimes in a matter of minutes. That’s how I know not to pay too-too close attention to my mood swings, and not to get too down by my depressive episodes. They pass. I know all too well, how quickly (and inexplicably) they pass. That knowledge has kept me alive, through all the times I wanted to end it all. I’m still here, because I hang onto that transience… and I hold out with curiosity.
That spiky autistic profile is not just about skills and abilities. It’s also about experience. Sensation. Permeability.
Yes, permeability. Being open to the world in unseen ways, being affected by it, impacted by it, shaped by it, in ways that no one else can see. That invisibility is partly because I’m stoic throughout. I’ve had to learn to be stoic, because a little girl who acts out, is a little girl who gets punished. Pushed and pulled — which is the equivalent of being beaten, when you have tactile sensitivities. Corporal punishment, doled out at the hands of people who probably had no idea how much they were really hurting me.
The whole world has no idea how much it’s hurting me — and so many others like us.
Second reason is because apparently non-autistic people can’t actually relate to anything that doesn’t have to do with their own personal experience. How strange, that they label us as the empathy-impaired sorts. Untrue. Untrue in the extreme. It’s the other way ’round. I feel everything. I sense everything. I participate in the cesspool of human emotions and experiences, without ever wanting to. I’m permeable. It all gets through. I only wish I were as non-empathic as I’m purported to be.
I have to protect myself. That much is so, so clear, after the past few weeks. It’s been a trying time, and I’m tired. I’m worn out. Depleted. Not only from the constant activity and the increase in social interactions (including a shit-ton of conference calls, reminding me yet again how much I hate talking on the phone). It’s been incredibly painful. But what to do? It can’t be helped. If I want to keep my job, I have to take hit after hit, and keep coming back for more. I have to put on my stoic face, remind myself it’s not forever, and step up… to get slammed. Knocked around. Exhausted, wiped out, drained… and then told I need to give more. Do more. Be more. Be like everyone. Be like normal people. Be a team player. Step up. Step up and take the hit. Everyone else is doing it, so get in line and take your daily medicine of pain. Just like everyone else.
Except I’m not just like everyone else.
I have to protect myself.
Protect myself from their inefficiencies that are making everything So . Much . Worse.
Guard myself against their bad behavior, their oversights, and especially against their emotional outbursts.
Deflect their emotional neediness, their grasping, cloying need for reassurance (especially with this fucking election going on).
Shield myself from their pettiness, their infighting which makes everything that much worse and prolongs the process of resolution.
Heaven help me, I need to be on constant guard. I’m tired. I’m over-extended. I’m a lot more permeable than usual.
And it’s not just the bad stuff I need to guard against. It’s also the “good” stuff. There are certain people around me who are drawn to me… they have that hungry look in their eye, longing for connection… and they don’t know how to do it without bringing sex into it. It’s a danger. They want to engage in that way. They’re looking to connect. And they want to do it in ways that damages their marriages – and could compromise mine. It happens with men. It happens with women. It happens with just about anyone I know who feels vulnerable and worn out, and looks to me to ease their pain… to fill up a part of them that gets so depleted by the ways they choose to live their lives.
I have to be careful, because the shared sense of connection can fell like I’m sharing it too, when I’m not. It’s easy for me to overlook that phenomenon. And a deep sense of shared connection (which I have by default) can escalate into something more than it ever should be. It’s happened before. I’ve gotten in trouble before. And now I know better. I also know that it’s the kind of thing that I need to guard against, because I’m aware. I’m a hell of a lot more aware than the non-autistic folks who are just oozing a need to connect… emanating their hunger for intimacy that they think can be satisfied by a romantic interlude.
That cannot happen. And as uncomfortable as it is for me, when I realize it, the best thing is to — yes — realize it. And nip it. Nip it in the bud. Keep things professional. Keep things distant. Boundaries, mate. Boundaries. Friendly, but not overly familiar. Keep it clean. Keep it clear. Because I can. And they can’t.
The onus for managing the dynamics between others and myself typically falls on me. The adult in the room is responsible for the behavior of the children, and neurotypical folks strike me — quite often — as children. Immature, prone to peer pressure, and sexually inexperienced — not so much with activity – though that’s often the case – but with their sexuality, in general. They don’t have a lot of inner monitoring or management skills, and so they’re more than a little impaired. To keep myself safe, and also keep things from turning into something that’s oh-so wrong, I have to “ride herd” on the dynamics… steer them in the directions I’m most comfortable with.
It sounds unfairly burdensome to me. It probably does to you, too. But what’s the alternative? To seize each “teachable moment” and evolve the neurotypicals around me, to better acquaint them with what’s really going on inside them, train them to notice when they’re being “emotionally incontinent”, and shepherd them along the path to self-enlightenment? Not gonna happen. Also, consider that when I’m in the thick of it, I’m over-taxed. And that means my processing time is slowed. And I stop being able to verbalize. I stopped verbalizing the other day, when I melted down over a particularly challenging series of events. Seizing teachable moments only works if you’re not prone to selective mutism.
So, I take things as they come. And I remind myself repeatedly that “It’s not me. It’s them,” when I’m feeling rushes of emotion and reaction that do not seem consistent with my own perspective. It happens. I’m permeable. I have to remember that, so I don’t lose myself in the sea of other people’s runny emotional muck. Because shutting myself down is not an option. If I do that, I lose my most reliable connection to the world around me — my orientation, my advantage.
If you want the highs, you have to manage that lows. If you’re going to be permeable (and we don’t always have a choice), you have to recognize the dangers, the risks, and learn to work with them.
I’ve been thinking about this a lot – especially lately, in light of my complexifying relationship to autism. Do I call myself “disabled”? Do I accept it as a condition that limits me? Why am I so reluctant to just adjust to that, and integrate that as part of my experience and identity? I’m deeply ambivalent.
I think part of it has to do with how I’m not permanently disabled by autism. My Aspie life is more akin to running a marathon on a bad day, and a 10K minimum on a good day. It makes things more challenging for me. It saps my energy. And many times I feel like I’m wobbling around after a mile-long sprint up a very steep hill. But it passes. I do have enduring executive function issues. But I know how to fix them. I’m working on them — as well as the rest of my life.
I guess I feel like calling myself “disabled” does a disservice to folks who truly are struggling with many, many aspects of their lives on a regular basis. I know I’m not supposed to compare myself to others, but when I do, I come out looking not at all disabled. I mean, seriously, if I just take good care of myself and get enough sleep and eat right and keep exercising, use my supports, and learn as I go, I can have a great life. I in fact do have a great life.
That’s not to say that I don’t have issues which are temporarily disabling. I have huge problems with communication, at times, and meltdowns (while rare, nowadays) are a force I need to reckon with. I don’t get jokes. I have trouble figuring out when to talk on the phone. I hate the phone, period. And some days, the best I can do is just muddle through… or go back to bed and rest till I’m functional again. I am at increased risk of exploitation, because I can be so trusting and naive and mis-read social cues. I’m sure I have over-paid for just about everything I’ve ever bought, because the thought of negotiating never occurs to me in the moment. I’ve really had a terrible time, in the past, and I’ve had to work through a whopping case of PTSD as a result of the “excitement” and “adventures” of my youth.
Autism for me can be disabling at times. It has brought me up short many, many times. But am I disabled? I wouldn’t say that — in fairness to people who truly are.
I’m one of the few people I know who actually understates their difficulties. Most people I know have an “enhanced” view of their own struggles — even the folks who appear to have the most advantage, the most skills, the most money, of the population. And it makes me wonder about the nature of our difficulties, and how we see ourselves as advantaged, disadvantaged, privileged, oppressed. I can’t speak for anyone who’s not in my demographic … so that limits how much I can responsibly say. But I’ll say what I can, because I think it’s important to consider — especially when we talk about privilege, disability, and the assumptions we make about How The World Is.
There’s all kinds of talk going on about white privilege these days, which is refreshing to me. On the other hand, I know a lot of white folks who absolutely bristle at the idea that they are any more privileged than others. The very suggestion really offends them. Even though it seems quite obvious to me, they take deep (and sometimes incensed) exception to the very idea that they have an advantage in life.
After all, they have difficulties. Their lives are not a cakewalk. They really struggle with certain things, and I don’t doubt they experience a great deal of pain as a result. I think what obscures our vision, sometimes, is that our difficulties may make it seem as though we’re not favored or advantaged (privileged) in the ways we most long for. We wish we could get special dispensation from the world, but things are tough all around, and we don’t see any evidence of that being the case.
So, we can think of ourselves as struggling in significant ways without a safety net, when in fact we do have a lot of privilege to fall back on. In my case, I’m a queer woman who’s been intermittently disabled over the years, working hard to make ends meet without a college degree to back me up. I’ve been broke, I’ve been well-off. Now I’m just barely above the “broke”line again. So, that’s not always easy. It makes me vulnerable. But my vulnerability is very, very different from others’.
Case in point: I was technically homeless in the winter of 1990. I walked out of a bad relationship with a duffel bag of clothes and the friendship of one person I could rely on. I was walking around the snowy streets of a major city (in a fairly drug-infested neighborhood), looking for a doorway to sleep in, in case my one contact couldn’t help me. I got lucky. They were home, so I didn’t have to spend the night in a doorway. I was officially homeless for a few weeks, while I looked for my own place. Had that one friend kicked me out, I would have been looking for another doorway.
The thing is, my homelessness was very, very different from that of a Black woman whom I and some friends helped to a shelter, where she was going with her three young daughters. She was apparently leaving a bad situation at home, as well — and it seemed to me that she’d hung in there as long as she could, for the sake of her kids. No, she did not want to talk about it. At all. It seemed clear that she had to go to a shelter, because of her situation. She couldn’t just take her little girls with her out onto the street. God only knows what became of her family. I, on the other hand, was able to pick up and leave a bad situation, just a month or two later, with a sense of elation and hope, not dread and desperation.
My situation was a passing inconvenience, and I knew that because I was a young white, middle-class woman who nobody guessed was gay, I could expect special consideration from others — especially from white men middle-class men who may have seen me as a potential partner. Not that I was taking advantage of that, but I was always so very aware that my homelessness and my difficulties were temporary hardships, at best, which others (white others) would jump at helping me solve. I got my divorce for free, because I worked at a law firm. I got a few pieces of furniture for very cheap, because someone at work told me about a going-out-of-business sale that was happening elsewhere in the office building. I could fall back on an informal network of white folks who looked out for each other (especially attractive young white women), and get the support I needed. I used that network to find a room for rent in a nice house in a safe (white) neighborhood. And I could walk around late at night without too much concern, because young white women especially were protected in that area by men and elderly women who kept a watchful eye.
This is why I am reluctant to call myself disabled or disadvantaged — because beneath the surface, there are forces which look out for “their own” and mitigate the impact. And those forces tend to favor people who look like me. That’s something that precious, precious few white folks are aware of. It’s not that we all have it easy and cushy and whatnot — there is just a whole lot more that we can take for granted… and often never suspect that others can’t.
I can also take for granted that, even if I’m wearing very thin and am having trouble balancing, tolerating light and sound and touch, can’t make myself clear (or can’t even talk at the moment), and I can’t understand what anyone is saying to me… if I just take care of myself, rest up, and use my tools, I can restore my functionality to acceptable levels. I am not permanently knocked out of the perpetual competition that can be life. I just usually feel like I’ve just run a 10K; I’m wobbly, sore, weary, and I don’t have a ton of energy to spare on fruitless pursuits.
My disadvantage is far more of a difference, than it is for many, many people. And while my situation may be intermittently disabling, the last thing I want to do, is compromise their position because I’m showing up calling myself “disabled“, when I can clearly take so much for granted, than they ever could.
My dark, dark mood yesterday was directly connected to being tired and also being in pain. But it felt like my whole world was crashing down.
I get caught up in a lot of emotions that can be directly tracked back to how I’m feeling physically. This happens to me a lot — always has — and now that I know a name for getting confused about emotions (alexithymia), perhaps I need to just check myself, anytime I’m convinced it’s all hopeless and there’s no use to anything… and not wallow in something that actually isn’t there.
That’s not to say that I’m not feeling genuine emotions. I’ve been getting increasingly angry about my life spent struggling with so many things, with so little understanding, so little support. If anything, it was the opposite — being punished and bullied and mistreated and literally pushed and pulled around because nobody understood what my issues really were.
All the name-calling, all the ignorance… all the aggressive ignorance.
And the lost opportunities, the missed chances. The activities I passed up because they were more than I could handle socially and sensorily. The competitions I deliberately lost, because winning would have meant getting noticed and being at the center of everyone’s attention, where I would probably make a fool of myself. It’s easier to have a small class of schoolmates laugh at you, than an auditorium full of people. The jobs I didn’t go after. The promising academic career I abandoned, because I got my social cues mixed up with the wrong guy who turned into a stalker… and then lived in hiding for years, terrified to leave the house from when I was 21 till I was nearly 25. All the social “deals” I made, just to feel safe and protected. The ill-fated marriage to that man, the series of low-level jobs I’ve taken just to have a job that didn’t tax me too much and wear me out and put me in danger of screwing everything up.
These “films” keep playing in the back of my head, about how things were in the past, how much difficulty and struggle there was. And there’s a “voiceover” that keeps telling me, “It would have been better, had people known it was Aspergers, not you being stupid / defiant / lazy / impertinent / oppositional / etc.”
Of course, looking back on the 1960s, 70s, 80s, and then into the 90s and 00s, there’s absolutely no guarantee that any increased awareness of Aspergers would have made a damn’ bit of difference with me.
Even today, when so much more is known than even 10 years ago, prejudice and oversimplification rule the day, especially with regard to organizations that purport to “advocate” for us and “support” us. The whole Autism scene in the US is a shitshow, to put it lightly. And none of the people slinging it seem to much give one single shit about how much it’s hurting the people they claim to be “helping”. There’s still talk about finding a “cure” to ensure autistic people cease to exist. There’s still autism-hostile propaganda being published by Rolling Stone and other mainstream outlets that proclaim what a terrible, terrible tragedyit is that autism even exists.
We have a long, long way to go. And that makes me angry, too.
But I can’t just let it take over my life. Something’s got to be done with all this energy. I realized this last night, as I lay in bed and wept with frustration and feelings of isolation… and the thought occurred to me that, as bad as I may have it — have had it in the past — there are many, many others who have it so much worse than I. I was weeping in a bed of my own, in a bedroom with an air conditioner, in a house I own (well, technically am paying for each month), located in a good neighborhood, with a long-term life partner watching the political theater downstairs in our living room. For all my bitter sense of isolation, there I was, living well, with my belly full from a nice dinner only a few hours before.
I’ve been through some very tough times and close calls, and I’m not going to make light of them because of my ethnic and socioeconomic status. To do that would erase some of the truth of what my life has actually been like as an undiagnosed Aspie with a number of other chronic health conditions that have screwed me up over the years.
I have to be true to my life experience. And I also need to put that in a larger context that shows me that I’m NOT alone, I’m NOT being picked on, that as challenging as my situation may be, there are so, so, so many others who are struggling as much — and more — just as regularly and just as hopelessly as I have over the course of my life.
So, it makes no sense for me to let my anger and/or alexithymia get the better of me. Without discounting my own issues, I can use the immense energy that builds up behind my challenges, to do something that might — just might — be of use to others.
There are many things I cannot do. Diving into political activism, actions, marching, networking, drumming up support, calling people on the phone, and doing all those high-energy, high-endurance types of things that go with agitating for change… that’s much more than I can safely manage.
But there are many things I can do. I can write. I can send letters. I can connect online. I can tell stories about being human. And I can network indirectly through the written word. I can also “signal boost” the people who are doing the hard work that I cannot. Because the world needs to know what good is being done in the world by people who are deeply committed to making positive change.
So, what to do…? I have to watch my energy. It’s easy for me to overwork, overstep my bounds, and knock myself out of commission. I have yet to master my “flow”. But I can start somewhere – where I am. With what matters to me, which often seems to matter to others, as well. I have some ideas. I just need to follow through with them.
And I need to get some support for myself. I’ve got my list of potential therapists who may be able to help me with my Aspie issues. I’ll start calling around today and see what I can come up with. Just to get moving. Just to get moving in the right direction — any direction, really.
It’s all an adventure.
And I’m not one to sit on the sidelines. Not when I can do something. Anything.
Did you enjoy this? Please consider becoming a patron at Patreon.
I continue to be amazed by how much superstition and confusion and really, really bad information there is about Autism and Aspergers.
I don’t do much Googling of autism, because there is just so much one-sided information that has a whole lot of money behind it. And I don’t go on Facebook hardly at all, because there are so many neurotypical people who are affected by it, who all seem to be in a state of perpetual high-alert… and yet I don’t see a lot of effort made to understand autistic spectrum conditions at the very core. Maybe it’s happening, but I don’t see it.
And I don’t have the energy to seek it out. That’s what Twitter’s for, I guess.
But I’ve had to stay off Twitter more, lately, as I just get too drawn into it, and I lose track of everything else that I need to be doing. It’s a vicious cycle. Plus, Twitter on my tablet has somehow slowed to a desperate crawl and it’s hard to use. So, I un-installed it, and now I can listen to music without the constant interruptions from other apps connecting in the background.
I did a lot of stuff, this past weekend. Pretty much off my schedule. And it kind of blew up in my face with a couple of meltdowns on Saturday morning and Sunday evening. I’ve been melting down more frequently, in the past several months, and I need to do something about that. I know what things lead up to meltdowns, and I need to actively manage them, for my — and my partner’s — sake. She’s back to being afraid of me again. It’s been years, since she was really afraid of me, but apparently, my behavior has been intimidating enough for her to feel like she has to constantly walk on eggshells around me and “manage” me.
This is not a good feeling.
So, what to do? Well, first off, I need to realize just how much this summer is kicking my ass. It’s HOTa lot, which means my clothing is uncomfortable — any clothing is uncomfortable. Tempts me to join a nudist colony. Also, I’m not sleeping all that well. I crank up the air conditioner, but it doesn’t always work. I sometimes lie in bed for an hour, trying to get comfortable, before I can “get down”.
Aside from the heat, there’s the light — and activity. Bright sunlight flashing at me from every reflective surface, especially when driving, really sets me off, as I’ve become painfully aware, lately. Running errands on Saturday morning, it was a freaking gauntlet, dealing with sunlight glinting off every chrome bumper or shiny glass windshield / window. I really noticed it more than usual. All the motion, all the movement… traffic, people on bicycles and motorcycles and walking along the road, birds flying around and singing/calling and rabbits running across the road… You’d think they didn’t have anything better to do, than just be and do what they wanted to be and do.
And of course, I ended up frazzled and frayed, and then I talked to my disabled sister about old family stuff that she’s dealing with. She’s got a ton of health issues and she’s waiting to hear back from the judge about her Disability claim, which is stressful for everyone, because she’s on the verge of losing her home, if she can’t get some financial relief. I helped her out a little bit — enough to keep her afloat. That was the least stressful aspect of our connection. Doing a retrospective on how our parents did such a terrible job of taking care of us, beyond keeping a roof over our heads and food on the table… well, that was pretty grueling. And I’m still feeling the burn on that one.
The main thing that made my childhood and youth and early adulthood so demanding, was the total, utter lack of information about autism — as well as the comprehensive dearth of understanding that most of us were / are on the spectrum. I look around at people today who have access to autism information, who have diagnoses, who have resources at their disposal — if not social services, then at the very least social media support and an internet chock full of information from ActuallyAutistic people about what it’s like to be on the spectrum… what helps, what hurts… etc.
And I’m confused. Because growing up on the spectrum sucked supremely at times, because there was no awareness. And I wonder what kind of a difference it would have made, had we known then (40 years ago) what we know now. My mother could have understood that her intensely impacted sister was not just trying to be difficult throughout their childhood — she needed help and support and understanding. My mother might have gotten a clue about her own sensitivities and needs for support and more actively managed her situation. She might have realized that I was in a different “quadrant” of the spectrum, in terms of sensitivities, and not been as rough with me all the time.
I might have been more cognizant of my balance issues, my vestibular instability, and not taken as many chances with climbing and jumping and doing all that stuff that got me injured. I might have had a way to understand why I was melting down the way I was, and found ways to not humiliate myself on a regular basis. And school… what might that have been like, had people realized that my talents were starkly “uneven” for a reason other than laziness? My fearful siblings might hate me less, than they do today. And my one sister I talked to the other night might have gotten more consideration from my autistic parents, if they’d realized that they had difficulties coming to terms with intense emotion and could factor that disability into their interactions with her — with all of us.
Just a little information can go a long way. We didn’t have any, back then. None. Zip. Zilch. Nada.
And I look around me, now, at people who have worlds’ more access to info and insight than we ever hoped to have, back then, and I wonder — What The F*ck is up with that?
It’s never easy, of course, and I’m in no position to blame or judge. But seriously, there’s something amiss, when so, so many ActuallyAutistic people are talking in detail about their lives, offering insights and information, and there are organizations and researchers who are pursuing productive lines of investigation (outside the whole vaccination controversy) about how autistic lives can be understood and supported… and yet, we’re still “lighting it up blue” and praying for a “cure”.
It’s just kind of embarrassing, to tell the truth. The U.K. (and much of northern Europe) seems decades ahead of what’s going on in the U.S. Okay, so France has a bad habit of committing autistic people to mental institutions, and since I don’t live in Europe anymore, it’s no good to rant about it. But it seems like the U.S. is stuck in the dark ages, still. And people in a position to change that, don’t seem to realize it — or realize that it needs to change.
But it does. I’m so sick and tired of reading accounts from people who have been misunderstood, poorly served, marginalized, and disenfranchised from their own lives, simply because their brains work differently than others. I’m sick and tired of hearing people wail and moan about the awfulness of autism, when they’re actually making the problems worse by not paying any attention to what their kids are clearly telling them. I’m sick and tired of people stressing us out constantly with the nauseating perpetual motion machine of hype and hyperactivity, the non-stop adrenaline push, the incessant noise and light and activity… the verbal bias that rules the mainstream world… and then wondering why, oh why, we melt down.
We know so much more than we used to. Why is that knowledge not modifying any mainstream, neurotypical behavior? In some places it is, with some grocery stores offering quiet hours in the U.K. But in the vast majority of places, nobody seems to really care at all that they’re creating toxic, needlessly taxing environments for people who are more sensitive than they are.
It’s just so irritating. And it’s needless. Especially for people who live with autistic folks, who flatly refuse to adapt their behavior or their environment to the ones who may need anywhere from just a smidge of accommodation to full-on re-configuration of the environment to feel human and function at their best.
I’m in a terrible mood. This summer is interminable. There are at least five more weeks left of it. August is my least favorite month of all. Even less so than March, which truly sucks in this part of the world.
Enough. I’ve ranted enough. Time to find solace in my routine.
There’s actually something to be said for having slowed processing speed, as well as a proverbial collander for a short-term working memory. It keeps me from being in a perpetual state of high-alert battle stations.
I’ve come to realize, over the years, that a lot of people have been pretty mean to me. Supposed friends. Co-workers. Bosses. Family members. You name it, samples from each group — and more — have been pretty unkind to me. Teasing. Bullying. And just plain being inconsiderate and mean-spirited.
Meanwhile, I’ve gone along happily enough, not realizing the full extent of their incredibly stupid cruelty.
First off, I haven’t understood what they were saying to me, right away. My audio processing seems to be off, much of the time, as I walk around in a field of static, where everything is turned WAY UP without distinction. Plus, my sensory issues are pretty distracting, and getting them to chill out and not consume my attention takes a lot of processing cycles. So, I don’t have all the time and energy in the world to focus on what someone’s saying to me — or even realize they’re talking to me / interacting with me, to begin with.
Second, when I have managed to tune in, my processing speed has been slow, as I’ve needed to translate words into pictures, figure out what the pictures mean, translate them back into words, and then respond. It takes time. Sometimes a lot of time, depending on my energy levels and the amount of sensory input around me.
Third, my short-term working memory is not stellar. I’m highly susceptible to interference and distraction, which cuts down on the amount of energy left to encode memories and work with them. So, even the things that I do figure out, I tend to forget in the space of 15 minutes or so.
It sounds disabling, perhaps, but it’s actually buffered me from all the stupidity people are guilty of, sometimes without even realizing it.
I go happily on my way, regardless of the states of mind and heart of the crowd around me.
And that’s actually fine with me. Because engaging everyone in a dialog about what a sh*thead they’re being (inadvertently or otherwise) is a battle I don’t care to fight, each and every waking moment of my life. If I were instantly aware of what people were saying to me, and how they’re saying it, and I could piece together all the ramifications in short order, I’d be forever manning my own battle stations. That’s no way to live.
I’ve got better things to do. Like read up on medieval history and work on my writing projects. Thatstuff I dowant to get into.
I just finished reading an excellent essay over at Unstrange Mind titled “S is for Stop Saying Savant Syndrome and Splinter Skills” written by Sparrow Rose Jones. Because my children are twice exceptional, both disabled and gifted, these descriptors have been applied to them by several “therapists” and “autism professionals”. One in particular said something that still irritates me to no end. As I described one of my children’s strengths in reading she responded with;
“We call those Swiss cheese brains.”
This is a terrible thing to say about someone you are supposedly serving. She considered my child’s wonderful brain, his wonderful person, as a piece of cheese with holes in it. It was her, the highly skilled “professional”, that would fill in these holes and return my child whole. As if she, lacking respect, lacking empathy, and lacking understanding, should have authority over deficits to be addressed. If my children have Swiss cheese brains, you, benevolent “therapist” have a Swiss cheese heart.
I cannot believe I subjected my children to this industry. I regret.