Merry Christmas, everyone. I’m omitting the exclamation point, because there have been far too many of them, lately, and I’m in the mood for something more … subdued.
My list-making and task-charting worked, and I didn’t have to really think about what to do next, since it was all written down. That left me more energy and resources to focus on the tasks at hand and really give it all I had. I found some additional presents that I was so happy with — some of them I only discovered after a couple of passes through a certain section of the store. I had to keep doubling back, because I kept getting distracted by everything around me. But after I got used to the surroundings and got my bearings, I found some great stuff.
I went back to one of the stores I’d visited with my partner, a few days ago, to see if there was anything additional I could find. Sure enough, there was. I was more successful this time than last, because I was working alone, I didn’t have to keep her situation in mind, and I was more familiar with the store.
So many people were out yesterday… for a Sunday, it’s unusual. It was pretty disorienting. But then, it was Christmas Eve, so…
All in all, I had a pretty positive experience. I still got worn out after only a few hours, though. And it took me longer to do some things that I would have liked. I also would have liked to not see some of the holiday decorations at one of the stores I visited. They were pretty scary, actually. For some reason, a buyer thought it would be a good idea to cover the torso of a headless female mannequin with red or green glitter, and attach it to the top of a small Christmas tree. It was a little nightmarish.
The scary human-Christmas-tree-cyborg aside, yesterday was a good day for learning… about how even if I’m left to my own devices, even if I’ve got the day mapped out, even if I’m crystal-clear on what needs to happen, I still have my limits at this time of year. And no matter what I do to mitigate the effects of uncertainty and More Things To Do, I’m still going to be really taxed by the environment.
No matter what I do, no matter how much sleep I get, how well I eat, how well I take care of myself in general, I’m still going to struggle with external circumstances and the super-duper, pumped-up atmosphere of the holiday season.
And yet… I really do love this time of year. Driving around on the back roads, the skies were clear and the world was suffused in ice. We had a lot of freezing rain on Saturday, which glazed everything in 1/4 inch of ice. And on Sunday, as the weather cleared and the sun shone, and all the muted colors of the slumbering trees and dead grasses and frost and ice and snow stood out in sharp contrast against the blue sky with its passing whispy clouds, I couldn’t help but just love every minute of it.
I really do enjoy this time of year. I love the long nights, the quiet that comes after the storms, the weight of winter clothes, and the slower pace to everything. I thrive during the winter, when I feel like I can finally catch up with myself. And I literally feel at my physical best when I’m outside shoveling snow in sub-freezing temperatures. My body feels the most comfortable when it’s below 20 Fahrenheit (-30 Celsius). My inner heater seems to kick in only at that temperature. And when it’s below zero (Fahrenheit), I really feel great. I don’t even feel the cold that intensely, when it’s that cold. I feel it more, when it’s around freezing. Then, it feels like it’s getting in my bones and shutting me down.
So, this coming week should be wonderful — it’s going to be in single digits for several days, and below zero at night.
Yeah, I love this time of year. But the whole Christmas season messes things up. Too many lights. Too much music. Too much shopping. Too many people. And interactions with strangers. Noise. Lots of noise, interspersed with sounds that I’m supposed to pay attention to. Movement. Unpredictable people not paying attention when they’re driving. Everybody with emotional issues. Money issues. Let loose in the world and insisting on talking to me. Ugh. I’m so glad it’s nearly over. I really just want to enjoy myself. Have nice meals. Get grounded. Chill out.
All this means I’ve got to make some changes. My partner and I agree that next year’s going to be structured very differently than this one (and years past). We’re going to do more advance preparation, buying presents ahead of time, getting better prepared, mailing things out weeks before we need to. Just being more mindful, early on, so we can really enjoy ourselves when the season “hits”.
Doing a lot of advance prep always seemed … wrong … to me in the past. I didn’t want to think about Christmas, till it was right “on top of us”. I couldn’t get into the spirit ahead of time. But the older I get, and the more I appreciate the season, the more sense it makes. I can get the obligations out of the way up front. Put in the time and energy up front, so I can relax at a later point.
Doing it all at once may be in the spirit of the season, but that’s just not working for me anymore.
So, it’s time for a little change — a big change, in fact. And because both my partner and I are of like mind about this and can support each other, this is one change for the better that’s likely to “stick”.
It’s all for the sake of getting to really enjoy this time of year. That’s important.
And with that, I shall get into my day and enjoy this Christmas for what it is — another stage in the turning of the wheel that takes us ever on.
Merry Christmas, everyone. I hope you have a good one.
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Ouch. We had a bunch of freezing rain, yesterday, which kept me inside… then drew me outside to break up the veritable ice-skating rink on my deck, stairs, and driveway… then knocked out the power for a few hours, last night.
Now the Christmas turkey I’d been thawing is “iffy”, and I don’t dare cook it up. The inside of the refrigerator probably stayed pretty cool, the whole time we were without power, but I don’t want to take any chances. I just don’t want to spend Christmas day sick — and neither does my partner, who’s even more sensitive to food stuff than I am.
So, it’s time to shift and adjust… make the most of my situation and count my blessings. Because I really do have a lot to be grateful for. That thought has to carry me through, because I have a full day ahead of me, this Christmas Eve.
I need to food shop. I need to visit some local stores to find some nice things for my partner. My go-to store was closed the other day, when spent the afternoon shopping. I made the best of it, but I still have to get some more presents for my partner. I’m not looking forward to wading into the stores, but it’s gotta get done. Nobody else is going to do it for me.
This year it’s so weird — I thought for sure that I had gotten her a bunch of things, but it turns out, I didn’t. She (in typical style) has gotten me a bunch of things. I ask her not to, every single year, because A) I really don’t need them, as I’m trying to simplify my life and actually have less stuff, and B) it’s a setup for a reciprocity nightmare. She expects the same level of “gifting” from me, as she provides to me, and it’s a set-up for failure. I’ve ended up melting down more Christmas mornings than I care to think about, because of the pressure — and my inevitable failure. I try and try, and I think I get it right… but then I don’t. And it’s crushing. For her, for me, for the whole experience.
Ah, well. That’s just one of those things.
At least I have today to redeem myself.
And so I shall. I’ll map out my route, find stores along the way that are bound to have what I’m looking for, and I’ll be thoughtful about it. Part of the problem with shopping before, was that I had to take care of both myself and my partner. She’s got mobility issues, as well as some cognitive issues, and when she’s left to her own devices, unfortunate things happen — like her losing the lenses from her glasses and not even realizing it till much later… like losing a glove… misplacing her wallet… slipping on ice… forgetting something… getting hurt. I have to be on high alert — especially when we’re out in public where everyone is shopping and milling around. It’s already demanding for me, and I’m stretched to my max. But I have to stay on point for her, as well. Because that’s how I roll. I need to take care of her, as well as myself.
Today, though, it’s just me. I can move at my own pace (which is much faster than hers), and I can get some stuff done. I’ll chart my course, figure out where to go and when to go there, I’ll choreograph it down to the quarter-hour, and I’ll just git ‘er done. Then I can come home, put up the food, and relax. Chill. Take care of myself. Take a nap. Wrap presents. Just get into the Christmas spirit in my own absolutely autistic way.
See, that’s the thing — when I’m allowed to do things in my own way, and I can leverage my strengths, things can go great. But when I have to accommodate others and go at another person’s pace in the non-autistic world, it’s really challenging for me. It’s good practice to accommodate and help others who need it, and it’s good practice for me to interact with the non-autistic world — sort of like a martial art — so it’s been very beneficial to my character. But there are times when I just need to go off by my autistic self and get stuff done in my own special autistic way.
Got my list, and I’m checking it twice. The year’s been full of naughty and nice behaviors, but all is forgiven for the next week or so. Then the wheel of the year stops turning, Yule sets in, and I can settle in, as well.
I’m sure next year will have lots to keep me occupied. But right now, today is what matters most.
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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.
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.
This is how I’m feeling, right now. I’m actually in a very good space, after having been incredibly busy for the past few days. I’ve got things some important things sorted out — and that’s taken a lot of pressure off me. Sweet.
I’ve got my back yard all raked and mostly free of leaves. My front yard just needs to be raked, but I’ll be able to do that in another hour or so, when the sun is up and I can see what I’m doing. I got my car inspected yesterday. And I’ve made up my mind about a conundrum that’s been dogging me for several weeks, now.
The biggest “win” was changing my annual physical from next Monday afternoon to this Friday morning. I need to get certain measurements taken, so I can get a discount on my health insurance. U.S. insurers are all into “helping” us manage our healthcare, which really means they’re funneling us down a path that they’ll pay for, and that they approve of (saints preserve us). I can save $700 a year, if I record my blood pressure, blood glucose, waist measurement, and a handful of other biometrics… do a health review and identify some steps I can take to improve with the company’s on-site health and fitness consultant. It’s tiresome and feels intrusive, and I object to it on principle. But … $700. You know?
Fortunately, I’ve managed to keep my most serious ills out of the official system. Nobody believed me, anyway, when I told them how much pain I was in, for so many years. Nobody believed me about a range of other health issues I’ve had. It made it much harder for me to manage my situation, but it also forced me to improvise and come up with genuine, lasting changes that have solved many of the issues at the root.
No doctor could have — or would have — gone down the routes I’ve taken. And even the ones who helped me, here and there, often doubted my approach. Until they saw it actually worked — and better than what they’d suggested. Ha.
Anyway, switching my appointment from Monday afternoon to Friday is a Really Big Deal for me. I have the day off work on Friday, and my appointment is at 10:30 a.m., so doing the fasting thing for my blood test won’t be a problem. And I won’t have to take time off work and deal with rush hour traffic, so that relieves another couple of huge stressors. Yeah, this is pretty big for me, even though other people wouldn’t think it was such a huge deal. But It Is!!! And I’m so happy and relieved that it worked out.
This month, I have every Friday off work, as well as the Thursday before Christmas. Then I have the week off between Christmas and New Years. This is the first year I’ve ever had this, and it is really wonderful. It takes the pressure off in a big way, and that’s good, because I have a bunch of stuff I need to take care of — get some bodywork done on one of the cars, and then get it inspected. Christmas shopping. Coming up with gifts I actually want for myself, so I can tell my partner. Cleaning my study, which has become a storage area for all the reading materials I’ve been meaning to read. Catching up with my reading. Catching up on my exercise. Catching up on my sleep. Catching up with my writing. Catching up, period.
It’s amazing what a little time off will do. This full-time working stuff is not for me, to be quite honest. But here I am… until further notice.
Anyway, this is a month for me to settle in and prepare for the New Year. I have Stuff I Want To Accomplish, and it looks like it’s actually going to get done. That makes me very happy. Very happy, indeed.
Now, off I go on another “leg” of my trek to the far metaphorical mountains, where my destiny awaits.
I had a really busy weekend, starting with an autism conference where Temple Grandin was the keynote speaker, and there were three workshops (and lunch and coffee and water and snacks). It was great hearing Dr. Grandin speak in person, and I really appreciated a lot that she had to say — especially about the importance of getting autistic kids working when they’re young, say at 11 years of age.
I know I was always “worked” as a kid — in my family, you pitched in and did your part with the gardening, weeding, yard work, and so forth. And that translated to doing yardwork for neighbors and doing a paper route when I was 12. I have worked since I was 12, really, holding down a long series of part-time jobs when I was in school, and then seamlessly transferring to full-time work after I left (er, dropped out after 4 interminable, traumatic years of) college.
It was just done that way, when I was growing up. You just worked. Everybody worked. It was non-negotiable. So, hearing parents now talk about how their kids aren’t able to get jobs… I just don’t know how that happens.
Anyway, after that, I went to a workshop talking about research done on the “invisible generation” of autistic folks — late-diagnosed individuals over the age of 50, who have spent their/our lives pretty confused and confounded and often disadvantaged because of dealing with that whole autistic business in a world that frankly just doesn’t give a sh*t about understanding us, let alone accommodating our “variations”. I almost broke down in tears a couple of times when the researchers were presenting their findings. I was in a room full of people, of course, so I didn’t. But I came close. Especially when they were reading the commentary.
The overarching thought that came out of that session was:
Nobody understands just how brutal life has been to some of us.
Nor do they really get just how strong we truly are.
Or how fortunate they are, that so many of us have learned to overcome what they’ve thrown at us.
It’s their loss that they don’t know… but we’re the ones who pay the price.
Sheesh. People really suck, sometimes.
Well, anyway, after that, it was time for lunch, and surprisingly, we were all herded into a large room with two long tables full of sandwiches for us to choose from. I prefer gluten-free, and I’d marked that on my registration form, but apparently, they didn’t accommodate that. The way the form was presented, it looked like I’d have a choice of specific lunches. But everybody was all just thrown together — three mini-sandwich options, a bag of chips, and a cookie.
For someone who’s trying to avoid gluten and processed sugar and processed foods, in general, it wasn’t a peak experience.
After that, my experience got a little worse. I attended a workshop on employment, and the speaker was a “transition specialist” for autistic folks in high school (and college?). She was all about the Disability of Autism, deficits in Theory of Mind (if you read this blog much, you probably know what I think of that), and pointing out “inexplicable” responses by young autistic adults to her directions.
I found it a little insulting, to be honest. Fortunately/unfortunately, my processing speed was slower after that lunch (plus, I was really tired from working full-time for the four days prior), so my outrage wasn’t very well-defined or articulate. I considered approaching her afterwards and introducing myself as an autistic woman who’s been fully employed since 1988, but there was a line. And she had a really bad cold. I wasn’t taking any chances getting sick from her, especially since she seemed pretty set in her ideas and there probably wasn’t any chance I’d make a difference in that moment.
Maybe I’ll send her an email.
The last session I attended was “Understanding Gender Identity and Sexual Orientation as it Overlaps with Autism: A Strengths Based Approach”, but it turned out to be about being trans and autistic and what kinds of issues autistic trans folks face everyday. In terms of being awareness-raising and informative, I give it an A+. The problem is, it wasn’t what the program said it was about, and by the end of the day, I literally couldn’t switch gears and adjust to the disconnect between my expectations and the reality of the situation. So, I felt like there was a void left that I really regretted.
It surprised me a little that the autistic folks who were presenting would change up the structure and nature of their talk. They’re clearly on a different part of the spectrum than I, when it comes to that stuff. If I were doing the talk, I’d hew to the line so literally… But that’s me.
Saturday was full. Yeah. Then I had to do some chores at home and go out and pick up supper. I got in bed early and slept like a rock for nearly 10 hours, which was a rare treat.
Sunday was a jam-packed sprint, as I tried to catch up on everything I’d not been able to do the day before. Getting my job-search stuff together. Coordinating other projects I’m working on. A whole lot of yard work. Plus, taking down old Christmas lights and putting up new ones. Getting the ornaments out… heck, just finding where the ornaments were, to begin with… Getting the outside tree situated…
We’ve had our Christmas tree outside every year, since a few years ago, because of sensory sensitivities. Ironically, it’s my partner, not me, who’s sensitive to the smell of the tree. She can’t handle it. And I get it. So, I set up the tree on the deck, where we can see it from the kitchen while we’re cooking and washing up. It’s nice there. I string lights on it, and it makes a nice colorful glow in the dark.
After that last rush, I made us some late brunch, and then we watched football all evening. Our interests in t.v. have really diverged over the past years, and football or other sports are about the only things we can watch together without annoying one of us. It works.
So, anyway… systems.
That’s what I was going to write about.
As a result of all that excitement over the weekend, I’m pretty much shot, today. Fried. Shaky and hypersensitive. All my sensory stuff is whacked out, and while my eyesight and hearing is ever so keen, and my tactile defensiveness is really up there, I still feel like I’m floating in an electric bubble, with all my movements feeling like they’re 2 seconds behind my impulses. My body is numb and tingling, as it gets sometimes when I’ve been whacked out on adrenaline too long. And I’m having a hell of a time typing. It feels surreal. (did I say that before?) like I’m enveloped in a thick blanket of goo that’s slowing me down, but amplifying my every sensation at the same time.
Not that I can accommodate my own limitations today. I have to get my car inspected. Its sticker is 4 days overdue, and I can’t afford the ticket. I have to get my work done, which involves a lot of data analysis and thinking really hard. I have to change my doctor’s appointment to early in the morning so I can get my blood glucose tested while fasting, so I can get a discount on my health insurance. And I have to prepare for a presentation I’m doing tonight. It’s gonna be a long day, and not being able to type is a real problem.
But I have my systems to keep me going, keep me on track, and make sure I’m getting everything done. I have my email, my calendar, my reminders, and my checklists. I have my to-do priorities, and I have my pace pretty well figured out. All I have to do now, is follow my own plan. If I can do that, I’ll be fine.
Put myself on autopilot, keep myself hydrated, keep going, and hope for the best.
But it’ll be nice to get back to my regular schedule, too.
I’ve missed having a regular schedule. My partner isn’t on one. She sleeps when she wants and gets up when she wants, and she doesn’t mind eating at different times of the day. Me, I need my schedule. My routine. My predictability. I have a lot going on, and I have a lot of input inundating me, each and every day. So, I don’t have a lot of extra processing resources to sort through the constantly changing variables of a schedule-less life.
I can get more done when I’ve got a timetable and deadlines — as witnessed by my utter inability to complete just a few simple tasks I’d intended to handle during my time off. Once I got away from the structure, everything fell to pieces. Not in a bad way. Just in a disjointed, somewhat “free flowing” (cringe) way.
I’m not a fan of “free flowing” stuff. “Going with the flow” gives me the heebie-jeebies. That’s the technical term for a stomach-knotting anxiety that makes my skin feel like something’s crawling on it, and makes it next to impossible to think.
I really need my routine.
Of course, ideally, I’d have a routine that doesn’t involve dragging myself out into the non-autistic world to contend with all the lack of awareness, the callousness, the cruelty, the thoughtlessness, the sensory overload. Ideally, I wouldn’t have to subject myself to all that for the sake of a paycheck. I’d work out a routine that works for me, and I’d follow it, each and every day. With discipline. And rigor. And productivity-fueled enthusiasm.
It’s a goal.
Anyway, I see time is getting away from me, and I’ve got get moving and get ready for work. I’ve shuffled some of my morning commitments, so I don’t have to plunge myself into the 8:00 a.m. commuter crush. I can get my shower, take my first conference call at home, and then head into the office when everyone has moved along. I like this plan. It works.
And that’s a good way to start back.
It’s unavoidable, so I might as well make the most of it. There’s something good in there to feed me.
And I’m pretty wiped out. I’ve had most of the past week to just do the things I like to do, in the way I like to do them. Which means, a lot of sitting. And a lot of isolating. And a lot of reading and writing and researching and pulling out textbooks, thumbing through them and crying, “Ah-ha!” when I find the passage(s) I’m looking for.
I’ve been immersed in a certain mode of thought I don’t have the luxury for, in my regular everyday working life — where my co-workers are suburban parents who just want to make enough money to put their kids through school and/or climb high enough on the corporate ladder where they can vex more people than those who vex them.
It’s been so much fun, being away from that whole scene, that major drain of a scene. And while I do look forward to getting back to my routine, I don’t look forward to dealing with those people again. It’s been a real pleasure, not having to constantly come to terms with the mixture of sadness, pity, compassion, frustration, and intermittent admiration, that I cycle through each day.
But I have to say, I am pretty tired.
It takes a lot out of me, trying to catch up with myself and the kind of life I want to lead, when I have such limited opportunity. It kind of works against me. Except, it’s my choice, and I can do what I please. And in the end, I’ve got a lot of satisfaction out of the whole deal.
So, my Major Deadline has passed. It went off pretty much without a hitch.
Just in time for Thanksgiving. I’ve got some time off, next week, but I’ll probably check in on my project to see how it’s going, now that it’s “live”.
It’s been pretty brutal, overall. Really, really taxing. And it’s taken just about a year to get this “15-week” (Hahahahahaha!) project ready for prime-time.
Now it’s out there, and it’s time to step back, think through all the lessons of the past year, and figure out the next steps. Because this sh*t isn’t going to stop. I’ve got another phase of this project just around the corner in less than 2 months’ time. So, get a little rest, and get back into it.
One of the BIG lessons of this has been seeing just how non-verbal I am, when I am in problem-solving mode. Make no mistake, I’ve been mostly in problem-solving mode for the past year. So, I’ve been mostly visual-spatial. Which means I haven’t been thinking well in words — or the times when I’ve had to think in words (and talk), I’ve been at a disadvantage. And the talking has cut into my non-verbal problem-solving.
I’ve known I’m a visual / non-verbal thinker (this blog nothwithstanding) for many years. And I’ve known for just as long that having to switch my mode between words and pictures is a problem and makes both sides more difficult. But not until this past year (or two) have I really seen so clearly just how much of a problem this can be.
In my job, I have to communicate to people.
But communicating just doesn’t happen, when I’m in non-verbal mode. So, I don’t do my full job. And it works against me and the people I work with.
Huh. If I had more energy, I’d dig into this more, but the bottom line is, I need to figure out how to meet the requirements of verbalizing, even while I’m in heavy-duty non-verbal mode. Because the job requires it. And it’s not that I don’t like to do it, or that I can’t do it. It’s just that I need to find a better balance between doing it… and not.
Well, that’s a line of thought for another day. After I’ve caught up with myself and have the time and space to really think it through.
I’ve had a lot of important (for me) insights, over the past weeks, just haven’t had time to note them all down and expand on them. I’ll get to it. Just not yet.