Supposedly, because I’m Autistic, I’m incapable of interacting with non-autistic people the way they want me to.
Untrue. I wish it were true, some days. ‘Cause all the interacting with neurotypical people just gets so exhausting. I’m bone tired, starting around 10:30 a.m., every single day I have to go out into the NT world. And I just get more tired, throughout the course of each day. The nonsensical decision making and priorities are just so wearing…
But what’s an Autie to do? I’ve gotta make a living, and that means I have to get out in the thick of things, figure out how to navigate it all, and just get on with my life.
I also need to interact with other people on a regular basis. I can’t speak for anyone else, but if I don’t get out and interact with the world every few days or so, my thought process starts to get pretty “out there”. I get a little suspicious and paranoid, actually. And my mind starts telling me all sorts of things that aren’t entirely true. I need people around (in person, not just online) to provide details I’m overlooking in my very rigid thinking. I need them to keep me grounded.
It helps me.
But it’s not easy. Oh, no. It’s not easy at all. I mean, I’ve figured out some tips and tricks and whole lotta hacks that will get me through social interactions without offending everyone in sight and pissing off people who misunderstand me. But it doesn’t come naturally to me.
And therein lies the “rub”, as they say.
Because my hacks work. My clandestine stimming, concentrating on a place on someone’s face that isn’t their eyes, nodding periodically, using a finely tuned prosody and cadence to my speech… it’s all very effective. It’s attractive, even. Which means people want to interact with me. They love to interact with me. They seek me out. They come looking for me at work. They look me up online. They ping me on social media. They hang out with me at the 2 parties I go to, each year. They say they want to see more of me. They invite me to their homes. They invite me to events. They want me around, and they love my company, because I can offer them something they can’t get anywhere else — compassion, empathy, focus on them as the center of my world when I’m with them, interesting trivia (yep, got lots of that), laughter, relaxation, acceptance.
People love me. They can’t get enough of me.
In the words of the Talking Heads, “My god. What have I done?”
It seemed like a good idea, to develop all these coping mechanisms over the years. And they have all helped me to get good jobs and keep them and provide for my household at a level that most Autism researchers would probably declare impossible for someone “with my impairments”. But it comes at a cost. It all comes at a cost.
And that cost is exhaustion.
Well, fortunately, I’ve figured out some ways to get through, even if I am worn down to the bone. I keep going. I focus on the task at hand. I amuse myself periodically throughout the course of each day. And I have my early mornings to myself, as well as part of my evenings. I manage to wedge in things I really love, here and there, punctuating the interminable slog that is my life in the non-autistic world with moments of sheer bliss.
So, that’s something.
And it makes the rest of my life possible. Which is good. Because nothing truly worthwhile comes easy, I believe. And I can’t expect the rest of the world to accommodate me. Other people have their own problems, and my challenges are not even on their radar. If I want to keep a job, stay out of jail, keep a roof over my head, keep the cars in the garage, save money for emergencies… basically, have an adult life, I have to make choices and sacrifices. That’s how the whole adulting things goes, and our current climate of hyper-customization and convenience and being catered to and accommodated at every turn is not helping people cope with the inevitable challenges of just living a responsible and rewarding life.
Life as I experience it is a series of challenges which involve to varying degrees a regular influx of frustration, pain, anguish, sadness, disappointment, disillusionment, betrayal… you name it. But that’s how it goes. And if I want to have the life I need to have, I’ve got to figure out how to manage it all.
Which I do. Including the social stuff.
That being said, I have to get myself ready for work. I’m going in to the office today, after being home yesterday (I had nonstop meetings on the phone from 8:30 – 4:30, which is its own particular brand of misery for me). I’m going to be around people who are unrealistic, insecure, demanding, politically devious, clueless, and socially needy. That’s the deal. And I voluntarily engage with these people, learning tons about myself in the process, and making a living at it, too.
This showed up in my comments section the other day. Check it out, it might be a good opportunity.
I am the casting director for the American version of the award-winning BBC television series “Employable Me.”
The TV series I cast, “Employable Me,” follows people with Autism, Aspergers and other neurological conditions like Tourette Syndrome as they look for meaningful, long-term employment. The job-seekers selected to appear on our documentary series will be encouraged to unlock their hidden talents with the help of experts, doctors and neurological specialists so they can at long last find the job that best suits their unique skill sets and strengths and creates a sense of purpose in their life.
I am reaching out to you both with the hope that our current search for people who have neurological conditions and that manifest incredible intelligence that has not been appreciated properly by potential employers, might be shared with people in your social networks that might be interested in our series?
We’d love for our search for jobseekers to be mentioned there in the off-chance that people in a situation where their condition has been employment-prohibitive to date, but who have talent to offer and who could benefit from being a part of our series, will learn about it and apply to be considered.
A summary of what we are hoping you might be able to circulate for us in an email blast is below my signature in this email.
JOB-SEEKERS WITH NEUROLOGICAL CONDITIONS SOUGHT FOR AWARD-WINNING DOCUMENTARY SERIES, “Employable Me”
Documentary producers at Optomen USA are looking for people with neuro-divergent conditions such as ASD & Tourettes who would like our assistance finding employment on the documentary TV series EMPLOYABLE ME.
A diverse workforce can be great for a business and EMPLOYABLE ME wants to dramatically shake up the system to prove it.
The job-seekers selected to appear on our documentary series will be encouraged to unlock their hidden talents with the help of experts and specialists so they can at long last find the job that best suits their unique skill sets and strengths.
Optomen Productions produces hundreds of hours of television each year for many of the major cable and broadcast networks including Food Network, Travel Channel, Nat Geo Wild, Animal Planet, Investigation Discovery and Bravo. Our most successful series include Worst Cooks in America and Mysteries at the Museum.
Big news – The journal Autism will no longer be using the puzzle piece on their cover.
Plus, they’re shifting their approach to research:
… Precisely because it is a common endeavour, autism research requires the participation of that broad community on fair terms. It is not right that one group holds all of the influence and power. If any group, or collection of groups is unattended or their opinions discounted, then they are being treated unfairly and in a way that does damage to autism research itself. The core ethos of this journal must include ensuring that everyone who participates in autism research has their views taken into account.
This, in my view, is huge.
And it’s a welcome change. I encourage you to read the whole announcement. It’s not long, but it’s chock-full of encouraging signs.
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.
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Something occurred to me, the other day. Namely, that alexithymia has been a huge advantage for me.
Not because it’s confused me about my feelings, but because it’s forced me — literally forcedme — to rely on logic to navigate through life.
Okay, so that might not sound like such a great thing, considering how illogical the rest of the world is about stuff. Not being “in touch with my feelings” — heck, not even realizing I’m having certain feelings — sets me apart and puts me in the minority. It makes it harder to figure out whether people are really my friends or not. It makes it harder to figure out if I want people to be my friends. And it makes it difficult to tell what other people think of me, as well as figure out what I actually think of myself.
But that difficulty has been so pronounced, it’s required me to use my powers of observation and deduction to make sense of situations. To notice small details that others don’t see, to parse bits of info that most people overlook. To really invest a lot of myself in figuring out how things (and people) work, so I can be effective in interacting with them. I’m definitely one of the best “people persons” I know — people complement me all the time on my empathy and ability to interact with others. That, my friends, is because people have been one of my all-consuming interests, and I study them and their behaviors more closely than the most devoted American fantasy football player studies the weekly stats.
I’m good. I’m really that good. But it didn’t happen overnight. And it sure as heck didn’t happen by accident. I’ve worked at it. Nobody can take that from me. I’m the hardest-working person a lot of my friends. Well, yeah. Because I have to. Not much choice there.
I know it’s not a realistic option (because no choices are ever truly this binary), but if given the choice between built-in emotional “intelligence” about myself, or pure logic, I’d go with logic every time.
Given the right information about how my system works (including emotional things), with logic I can figure plenty of stuff out on my own. And logic serves me just as well as emotion. If I know — from observation — that such-and-such a sensation in my body means I’m nervous, I can take steps to offset the nervousness or channel the energy in a more productive direction. If I can deduce that such-and-such a feeling in my gut indicates a certain mental/emotional state, I can adapt and adjust and work with what’s there. If I know logically that being tired and hungry makes me feel terrible, emotionally, I can track my meals and sleeping pattern and recognize when my outbursts are related to exhaustion and/or low blood sugar.
Emotional self-knowledge only takes you so far, from what I can see. A whole lot of people around me who have no issues with alexithymia are (to put it coarsely) emotional wrecks. Their emotional states run their lives, and even though they’re “in touch with their feelings”, that doesn’t keep their feelings from taking over their lives. They’re even less happy than I am.
Of course, I’ve had to fail a lot of times before I figured out a lot of this. The rest of the world doesn’t instruct explicitly, but expects everybody to just know stuff. But all that failure has trained me to not take failing so damn’ personally, and to just get on with living my life, learning about it, and adjusting to the ongoing flow of information.
Information, it’s all information. And logic helps me parse through it deliberately, intentionally, self-sufficiently. Just how I like it 🙂
And I seriously doubt that I’d take the trouble to develop my logic, if I had insights into emotions and whatnot.
So, even with the difficulties, alexithymia has really come in handy. And to be honest, I wouldn’t trade it for the world. Some days, I’d like it to be a little less extreme. But I always have logic to fall back on.
And with that dangling participle, I’m off to live the rest of my life.
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The nice thing about having time off work, is that there’s no set routine for me to stick to.
The downside of that, is the very same thing — there’s no routine for me to stick with.
So, that means I have to work a little harder during my “time off”. I have to put more thought into how I’m going to spend each day. I have to put more time and energy, period, into everything I do.
It’s ironic — the time when I’m expecting to be able to rest, is the time when I get worn out more. But at least I get my naps in. That’s something.
I’ve got to put rope caulk around my windows today. No excuses. It’s getting into the single digits at night. I’m leaving my spigots dripping a little bit, so my pipes don’t freeze, like they did a few years ago. I’ve got the heat turned up. I have firewood put with easy reach in my garage. And I’ve got three days’ worth of hearty chicken-noodle stew in the refrigerator.
Rope caulk is non-negotiable in this house. Its windows are original to the house, dating back to — gasp — 1972 (younger than me, actually), and they get drafty. Personally, I prefer it that way. Because a tightly locked house is a house that doesn’t breathe. And houses need to breathe. I don’t care for getting trapped in a house with off-gassing from whatever stuff I hauled inside with me. Keeping a slight breeze going in the house keeps the air from stagnating. And it saves me from having to circulate with central air, etc.
Rope caulking is my annual admission of the fact that it’s friggin’ cold outside, and it’s not warming up anytime soon! I can let things go indefinitely, especially because I like to have a little chill in the air at times. But eventually, the New England winter gets the upper hand, and I pull out the rolls of corded putty that gets pressed into the seams and cracks around all the open-able windows in the house.
It’s good practice for me, actually. It helps me focus my attention, and it helps me strengthen my oft-flagging ability to keep my focus on one thing for extended periods of time. Rope caulking all the windows — 8 downstairs and 10 upstairs — isn’t instantaneous. After a while, the caulk makes my fingers tacky, and it becomes a sensory issue. But I know it’s going to happen, pretty much when I get to the the 10th window, so I have no excuse for getting bent out of shape about it. Yes, it’s uncomfortable. Yes, it sets me off. Yes, it makes it hard to concentrate. But that’s where taking a break comes in. And I can always step away for a few minutes to get something to eat or drink, wash my hands, and gather myself before I go back in.
I used to get so bent out of shape, when the caulk would stick to my fingers. But please. That’s just caulk being caulk. And me being me. So, enough of the upset. Just take steps to deal with it. And git ‘er done.
Speaking of which, it’s time to gather up my various breakfast dishes and cups, wash up, and dig out those boxes of rope caulk from the bottom of the pantry storage bin.
Well, okay. They ran the tests, they did the analysis, they made their findings. The paper says:
The results showed that children’s ToM was significantly associated with their pretend play in initiating play actions, object substitutions, property attribution, and pretending an imaginary object were present. However, the correlation coefficients failed to show a significant relationship between children’s ToM and their playfulness.
So, kids who did poorly on ToM didn’t “perform” pretend play very well.
From the paper (bold emphasis is mine, and I’ve taken out the citations):
Play, the main occupation of children, both reflects and improves the development of their physical, cognitive, and social skills. Play is the dynamic interaction between the individual child and the child’s immediate environment, and it is influenced by sociocultural factors. The two essential manifestations of play are external performance and internal experience. The former is observable performance, which unfolds in play activities; the latter is playfulness, which is the key to determining whether an activity belongs to play or not. Therefore, it is important to view play as a whole construct involving both external performance and internal experience.
Issues with this paper begin right from the start. First off, the idea that play is “the main occupation of children” seems flawed to me. And it seems to completely misunderstand the purpose of “play”. Kids aren’t just horsing around. They’re developing their inner systems, their senses, their reflexes, their relationship with the world. In my opinion, learning and development is the main occupation of children, and if it comes across as play, then great. But learning/development is not secondary to play, as the authors seem to believe. Quite the contrary — play is secondary to learning and development.
The paragraph then takes a turn for the better (sigh of relief) when the authors talk about how play has a dual nature — external and internal. It’s not just about how it looks to outsiders; it’s also about how you experience it yourself (the level of playfulness). And yeah, we need to consider both the internal and external sides of play, in order to assess it fully.
Pretend play is a form of external performance and is defined as play composed of both conventional imaginative play and symbolic play. Conventional imaginative play is preliminary pretend play. It refers to perceiving objects (or conventional toys) as real or small copies of things, and using them in a functionally proper way outside of the typical context. Examples are pretending to feed a doll using a toy spoon, using an empty cup to pretend to drink, or rolling a toy car on the floor and making engine noises. Symbolic play is sophisticated pretend play. It refers to using objects (or unstructured toys) as something else, attributing properties, or pretending an absent object is present. Examples are using a banana as a telephone, pretending a piece of cloth is wet, or making an imagined cup with the hands and pretending to drink. Therefore, pretend play provides an opportunity for children to practice events occurring in their daily lives or social worlds. Through engagement in pretend play, children learn the differences between reality and imagination. Moreover, pretend play reflects and facilitates the development of emotions, language, cognition, social skills, social awareness, and perspective-taking ability.
I’m sure there’s plenty of research substantiating the above, but I think there are a lot of conceptual leaps that hew to a typical line. And those leaps may be blinding the researchers to additional considerations.
Why is it so essential that children turn something into something it’s not, to show sophistication? Why is it assumed that children who substitute one thing for another are developing normally? Seems odd to me. Why wouldn’t they wonder if something was amiss with those kids, if they clearly can’t tell that what they’re holding is in fact not a telephone, but they keep trying to use it as one? And how is it heart-warming, for a child to not understand that their doll is inanimate, that it’s incapable of eating and drinking, so it’s pointless to try to feed it or give it a bottle? Maybe that’s standard-issue non-autistic childhood behavior, but it’s not the only kind of human behavior that bears fruit.
The bias becomes quickly clear. Pretend play appears to be the one and only precursor to normal development. So, one could say that if it’s absent, it’s logical to expect that “emotions, language, cognition, social skills, social awareness, and perspective-taking ability” would all be ultimately impaired. Ugh.
Pretend play deficit appears to be a clinical feature of children with ASD and has long been a focus of the study of child development. Previous studies have found that children with ASD are unable to understand the pretend actions in play. Wing, Gould, Yeates, and Brierly (1977) conducted the first research that directly examined pretend play in children with ASD and children with intellectual disability and found that the majority of children with no observable pretend play or those with stereotyped, copying pretend play behaviours were children with autistic disorder. Several studies have also found that pretend play is apparently less frequent in children with ASD, and that their play behaviours lack symbolism, creativity, and complexity. Rutherford et al. conducted a longitudinal study that measured children’s pretend play in a free play condition and a structured condition with external instructions. Their results showed that children with ASD found it significantly more difficult than typically developing children to perform pretend play in both conditions and that spontaneous pretend play was more impaired. Furthermore, in addition to difficulties in performing pretend play, children with ASD have impaired comprehension of pretend play as well. In summary, research has shown that children with ASD are unable to understand the pretend actions in play. Children with ASD have decreased frequency and complexity when performing pretend play, and the difficulties can present spontaneously or appear with external facilitations.
Oh, my. That’s chock full of bias, pathologizing, and outright cluelessness about what’s really going on beneath the surface of autistic play. It’s so full of … “incomplete understanding”… I’m not sure where to start.
There’s the deficit model approach. Talking about our differences as impairments. Citing research from 1977 (for heaven’s sake!), and not apparently asking any #ActuallyAutistic folks about why we played they way we did, when we were younger. Trust me, a lot of us remember. And we could shed a truckload of light and insight on this question of “Why do autistic kids play the way they do?”
I take issue with their assumption that autistic kids don’t understand pretend actions in play. What if — just what if — we actually did understand, but categorically rejected it, because we needed to play in a very different way? What if we’re just more interested in learning how the real world actually works, rather than fooling around with playthings that aren’t the real thing? There seems to be an assumption that children aren’t capable of that kind of reasoning, when we’re quite young.
But I remember clearly, so many times when I was young, being offered dolls and toys and other objects that were supposed to be played with a certain way, but consciously choosing not to interact with them the way I was expected. Because I wanted to find out how they worked. I wanted to see how they were put together. I didn’t play with the pretend vacuum cleaner my aunt gave me one Christmas. I took it apart and played with the different pieces, to see how they operated, how they felt, how they took up space. I had no interest in any dolls other than one that looked exactly like a real baby and had a body made of fleshlike foam. I didn’t think of that doll as my child, though. I thought of it as a friend. Because clearly, I couldn’t have a child of my own. I was too young. I was closer in “age” to that baby, than I was to my mother. So, you do the math. It made no logical sense for me to pretend I was that “baby’s” mother.
So, when all these adults are sitting on the floor, trying to get autistic kids to do pretend play like the “normal” kids, they might ask themselves if it makes any logical sense for those kids to do what they’re asking them to do. And it might also help if they tossed in a bit of reality along with the pretend. I just don’t get why children are expected to concoct their own version of what’s real and what’s not, when the real, physical, tangible world is right there in front of them, just waiting to teach them about all the laws of physics.
What the paper clearly misses, is the possibility that rather than being a sign of impairment, autistic kids’ modes of play are simply a sign of difference. Where non-autistic kids may pretend more, say, using a banana as a telephone or pretending that a doll is a real baby or imagining that a toy car is a real vehicle that makes real sounds, autistic kids might — just might — have more of an interest in non-pretend (or real) play.
What if autistic kids (who were shown in the study to be playful just like the non-autistic kids) simply have a different mode of play which emphasizes reality, which interacts with things as they are, rather than turning them into something else?
And what if that ability to actually play with the real properties of objects were essential to our development in learning to navigate the world around us and interact with our environments?
Looking even deeper, what if the researchers factored in sensory processing issues and rather than pathologizing their play styles, they realized that they actually served a purpose. To whit:
In this study, it was observed that children with ASD who had poor adaptation to change and more unique use of objects would exhibit play behaviours that were less changeable and lacked narrative. For example, the children might keep rolling the toy truck to watch the rotation of the wheels without any play purpose, and the children would also show resistance when asked to play with other objects or when the tester modelled the play actions.
Play, as many of us autistic folks know, can be “less changeable” for a whole host of reasons.
First, the situation might be overwhelming for the kid, which prompts them to stim, or find some repetitive motion that soothes their jangled nerves. Also, certain kinds of play might lead to a “flow state” which is blissfully consistent. Or the kid rolling the truck might be observing the rotation, seeing how it changes, based on the surface, sensing the vibrations of it, basically absorbing massive amounts of data about that seemingly simple scenario — all of which is invisible to the adult. What’s more, that adult might have had a childhood rich with pretend play, which got them in the habit of making stuff up in their mind that seemed to correlate with reality, but which was just the product of their undirected, uninformed imagination.
And if an adult comes along and interrupts your flow state, disrupts your experiment, insisting that you do something different that isn’t contextually appropriate, how is that supposed to affect an autistic kid? It’s annoying. It can be hurtful. Why should we accommodate their non-contextual request to change what we’re perfectly fine with?
However, the results showed that ToM was not a significant predictor of children’s playfulness, possibly because of the small sample size. In addition, the results showed that autistic behaviour was the most significant predictor of children’s playfulness. It suggested that children with more autistic behaviours would look less joyful during play. As autistic behaviour encompasses the characteristics of ASD, the results are congruent with those of previous studies demonstrating that children’s playfulness is related to individual characteristics, such as age, sex, and other personality attributes.
So, stop with the pathologizing, already. And never mind the ToM stuff, period. I find it very telling that the researchers felt the need to say autistic kids “look less joyful during play”. How would they know what joyful looks like? Trust me, I can be ecstatic on the inside, and people around me think I’m pissed off. Seems the impairments of social detection aren’t only autistic.
After reading through this paper, I have to wonder, what if so-called pretend play were actually a sign of pathology, indicating that non-autistic children are prone to make up things in their minds which simply aren’t true… and if left unchecked, that can ultimately develop into full-blown inability to deal with reality as it is. What if children who were skilled at pretend play eventually grow into adults who surround themselves with invented falsehoods which confirm their biases and are never challenged, because they’re seen as “normal” behavior? Given the amount of autism research like this paper, it would appear that too many pretend-play experts have been allowed to persist in their childhood habits of making sh*t up, and it’s now affecting their adult work.
Hmmmm… I think someone should do some research on that. Now that would be a paper I’d like to read.
Well, my duties have been discharged for the year, and now I’m free to do what I like with my time. Well, mostly free. I “clocked out” at 12:08 p.m., after answering a last-minute email from a colleague in Ireland. He was emailing me after his business hours, so I might as well be considerate. Then I turned on my email auto-reponder informing the world that I’ll be back in just under 2 weeks, and now I’m “free to move about the cabin”, as it were.
I love this time of year. I really do. I like the long nights. It feels warmly enveloping, even if it’s below freezing outside. I love the darkness and the short days. Sadly, the days will be lengthening after tomorrow. Oh, well… Maybe I’ll move to a Nordic country in my later years, so I can have a longer winter… Or not.
This year is an anomaly in my long career. Experts decry the low numbers of employment in the Autistic population, but it feels to me like I’ve been missing out. If only I were underemployed. Sheesh. 😉 I know, I know. I need to be careful what I ask for, but I’m seriously tired. I’ve been continuously employed since 1988 — nearly 30 years, now — and with just a few breaks in between — a week to regroup from a layoff in 1993, and another 10 days to move across the country in 1995 — I’ve been showing up to work religiously for three decades, now.
With just the all-too-short weekends to let me modestly recharge, till I had to go back at it on Monday mornings.
But this year is different. I’m now working for a company that has a free week off between Christmas and New Year’s each year. If that isn’t an antidote to all the corporate B.S., I don’t know what is. Plus, it’s free for everyone — it doesn’t tap into my vacation time or require a dock in pay. It’s just there to take. And everybody’s taking it.
Which means I’ll be free for nearly 2 weeks… and I can get into my Flow State. I can clean out my study and organize myself. Heck, I might even locate the copy of Flow that I bought a few months back. That would be nice. I could read it.
I can do what I like. Think what I like. Read what I like. Lie down and nap whenever I like. Make the most of my time, doing and thinking things I typically don’t have the time to do or think.
I might even sew something. That would be a lot of fun. I’ve got some clothes-making projects I’ve been thinking about for months, now. I could do that, too.
I can write. With more than the standard 20 minutes to collect my thoughts and get them on paper. I can focus on projects I’ve had cookin’ for quite some time. I can even finish up the Autistic Woman’s Cycle Calendar (a monthly cycle tracker that’s especially for menopausal women on the autism spectrum) that I’ve been finalizing for Auptima Press. I can do anything I like — and that means I can finalize stuff I’ve been wanting to finalize.
I’ve been thinking a lot about how much time and energy has been consumed by the drama around “To Siri With Love”.
I’ve been thinking a lot about how much time and energy women have spent over the last days and weeks and months, dealing with all of the sexual harassment bullshit that’s been going on for as long as we all can remember.
And yesterday, I came across a Twitter post that really said it all for me.
It’s as true for my feelings about the autistic situation, as it is for my feelings about women and our place in the world — past, present, future. It applies to a whole lot of groups — people of color, disabled, queer, all the folks who have been systematically disenfranchised and have been fighting to stay afloat for a while, now. We’re all so busy just trying to stay alive, that we have no chance to do much else.
Take Black women voters in Alabama, for example… Nobody really notices Black women, until they show up and vote the way everybody else who cares about the well-being of folks who aren’t straight, white, and a certain slice of Christian, should vote. And then, suddenly, everybody’s in love with Black women. They notice they exist.
And then the election passes, and everybody goes back to their systemic inequalities, slipping back into somnolent indifference… until the next Major Threat comes along.
It’s a tiresome cycle, and it’s perpetual. And it sucks the life out of so many of us. Basically, if we weren’t constantly dealing with all the socio-cultural assaults, the injustice, the inequalities, and so forth, how much time and energy would we have for creating and writing about other things that have to do with us living our lives to the fullest in the kind of world we want to create, rather than constantly defending ourselves against the systems that somebody else created and we are sorta kinda stuck with?
I feel the same way about the whole Siri drama. I feel like I’ve really gotten derailed, over the past week or so. I’m very happy with some of the pieces I written, and I think they will stand the test of time. They speak not only to themes in the book, but also to enduring issues that we really do need to solve as an autistic community, even as a larger human community, if we are going to move forward. Unless we fix some of this shit, we can’t ensure that everyone will live with full dignity and opportunity to experience life as fully as we can. It’s the typical socio-cultural moshpit action that gets me all stirred up and bent out of shape on a semi-regular basis.
The problem is, the Agendas I’ve been addressing have been set by somebody else, the bar for acceptability has been set extremely low, and the stakes feel very high.
It’s addicting. It truly is. Going on Twitter to see what else people have said, looking for how people are responding, coming through the news, reading blogs, even occasionally going over to Facebook – which I tend to avoid like the plague – it all perks me up and gets me out of my low-level malaise that seems to be the flavor of the year.
But addiction is not how I want to spend my life. In fact, much of my life has really been marred by addiction coming from all directions, including from within. I deal with my demons on a regular basis, and I know how easy it is for me to get drawn into cycles of upheaval followed by pain management, and I know how susceptible I am to the buzz that comes from active social media.
So, I have to be careful. And every now and then, I need to step away. It’s healthy. It feeds the sides of me that get lost in the online shuffle. And it helps my system regulate back to where I am behaving like myself again, instead of just being a series of reactions to everything else that’s happening around me.
Honestly, that’s what I want most: To be myself, in my own way, rather than just being a composite of reactions to others. The great irony is, those others probably don’t even realize I’m there, in the course of their own internal dramas. Everybody’s got their dance to dance, without exception. So, the task of living in constant relation to everybody else’s self-absorbed gyrations (which may not make any sense to anybody else outside their head, including me) is a fool’s errand.
Unfortunately, I fall for playing fool far too often.
That being said, when I look around me at the world we inhabit, replete with its misunderstandings about autism, and human experience in general, I ask myself, How can this change? Certainly, it changes when we take oppressive and exploitive elements to task, and we oppose their proliferation. We can’t just let people get away with crap without saying something. On the other hand, we also need to add in positive influences as a kind of cultural ballast to give our community more to work with than just accusations that Those peopledid things all wrong all over again.
That’s the space where I want to be. I want to be in a positive frame of mind, in a position of creating new alternatives, not just taking the old, tired ways to task. I don’t want to be a freaking gatekeeper for other people’s sensibilities. I’ve got my own since abilities, and getting dragged down to their level is just so depressing. Plus, it’s boring. Seriously it’s incredibly . mind-numbingly . boring. Where’s the joy? Where’s the excitement? Where’s the future? There’s not a whole lot of it that I’m seeing in the old, worn, outdated attitudes about autistic people and how we function in the world.
When I look around me, I see a lot of signs of hope. Employers are making more of an effort to make room for autistic people. Our community is picking up speed, beginning to thrive, and the amount of writing by actually autistic people is increasing exponentially. Things genuinely are shifting in our favor, however slowly, and every day it seems like there are new glimmers of hope in our prospects for the future. No substantive change happens overnight, of course, and the changes that we do make have to be supported and furthered in ways that will make them more than just a passing fad. But, compared to how things were 20 years ago when I first realized I was on the spectrum, things are so much better now. And they’re better because we are paying attention to the stuff that needs to change and we’re getting allies who are actually capable of stepping up and helping us steer our collective ship any better and more positive direction.
So, while the critic in me practically salivates at the idea of working my way through offending research papers and books and memoirs and picking them apart to show how very Wrong they are, there’s a bigger part of me that wants to just ditch all that crap, leave the critiquing to others who have the time and energy for it, and set out in a whole new direction. I don’t want to get stuck in the middle of other people’s lousy inventions, their shoddy thinking, their lazy philosophies, handing over their whole minds to purported experts who have a ton of funding to spread half truths and outright lies about people like me. I want to live my own truth, and demonstrate very clearly that there’s a whole lot more to being autistic than just a collection of behaviors. The autistic experience is humanity-times-1,000, and with the depth and breath of our intensities, there’s a whole lot to be learned about what it means to be autistic — and what it means to be human.
Our neurology amplifies everything. It magnifies and emphasizes stuff that most non-autistic people would never even notice. And it also numbs us to what other people are very sensitive to. It’s fascinating, and why wouldn’t I want to dwell in that fascination, as opposed to getting dragged down into the intellectual malaise of people who haven’t figured out how to think for themselves?
That being said, it’s time for me to wander off and go think about something interesting for a while, hone my thought process, and see what coolness I can come up with. Autism is amazing. It’s excellent. And it can be a hugely challenging gift. But when I rise to the challenge and work with things as they are, some pretty cool shit happens.