Let’s have some fun! #Autism and #Menopause :)

women walking along a lake in front of a sand dune balancing pots on their heads
Women walking along a lake in front of a sand dune balancing pots on their heads

Okay, I’m pretty sure I know what you’re thinking: Autism and Menopause! Where’s the fun in that?!

But bear with me… If you’re a geeky-nerdy type like me, learning all about the inner workings of one of the most misunderstood situations on the planet and figuring out how to work effectively with it to make your life that much better is an appealing prospect.

The thing is, you’re not alone.

Every seven seconds, one of America’s 76 million baby boomers turns 50.

Every day, about 5,000 American women enter menopause.

Until 2020, approximately 2 million women will reach menopause each year. Half of all post-menopausal women will be in Asia.

That’s a lot of us — and since I’m a woman, and I’ve gone through menopause myself (10 years “ahead of schedule”, thank heavens!) — I’ve got a few things to say about this.

Especially since it really affected — and was affected by — my autistic temperament.

It really, truly did. And if I’d know certain things ahead of time, I might have handled things very differently. And my experience might not have been so awful.

The thing that always amazes me about the social conversations we do / don’t have about menopause, is that it’s incredibly common and perfectly natural. And yet, it’s treated like some dread condition that needs to be either ignored completely or eradicated with some combination of meds. Hm. Sounds a bit like autism, to me, actually. So, we autistic women get a “two-for-one deal” on our situation. We get double the excitement, but nowhere near twice the support.

We’re lucky if we get any support at all.

I know I didn’t. At least, not much. My partner went through menopause before me, so I had an up-close-and-personal chance to see how it affects others. Panic attacks. Wild mood swings. Intense anxiety. Explosions! Not much to look forward to, right? But I also have to consider that her situation was unique — she was going through major changes around her parents passing away, family dramas, work problems, and so forth. I didn’t have those, when I was going through the Change. I had my own set of issues — Autism being front-and-center.

So, for me, the experience was different. But equally intense.

Oh, if I’d known then what I know now… I can honestly and truly say that I would have handled things very differently.

What’s done is done, and I can’t change my own situation. But I can certainly speak up about my experience, in hopes of other Autistic women benefiting from my experience. Like Autism, every woman’s experience of menopause is different. That goes without saying. But the qualities of our experiences (outside the specific details) can be very similar, and that’s where I want to focus.

Because heaven knows we need support. It’s challenging enough dealing with the world when you’re Autistic or menopausal. But when you’re both… woo hoo!

Oddly (or perhaps predictably) the mainstream hasn’t devoted a whole lot of resources to exploring this intersection of issues. Older women — especially Autistic women — don’t seem to be high on anybody’s list of priorities. Much more interesting to study Autistic children, teenage boys, or grown men. There’s more money in that, quite frankly. But where the mainstream fails, we can step up and help ourselves. There’s this thing called the internet, and it’s chock full of all kinds of goodies that we can mix-n-match and augment ourselves, to serve our own needs.

‘Cause who knows our needs better than we? Not a soul.

candle burning in the darkness

So, here goes… I’ll be posting more in the coming days and weeks. I’ll also be publishing additional tools and information over at Auptima Press, especially in conjunction with menopause support resources we’re developing over there.

I can either curse the darkness surrounding women + Autism + menopause… or I can light a candle. I’d much rather do something about it.

 


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Slowwww start to the year

snow monkey sitting in waterUsually, I’m “up to speed” by the 2nd week in January. In the past, I’ve been energized by New Year’s resolutions and the feeling that I have a new lease on life. But not this year. It’s different, now, and I’m not all that invigorated by brand new plans for 2018 that are supposed to fix everything that was wrong with 2017.

Basically, my plans are the same as 2017 – just a continuation with some completion of projects and ongoing progress on the agenda. Whether or not it will “fix” anything, is anybody’s guess, but at least some stuff will get done, and I can get them off my list.

But even though my plans are pretty clear and my path is well-defined, I’m really having to push myself to get going. I can do it. I do do it. I’m a grown-up, and I know that’s what it takes to make progress at times. But this year, I feel like one of those snow monkeys who just wants to sit around in a hot springs while the snow falls all around.

If only I could.

The thing is, I really do have a lot I need to accomplish, this year. Projects I’ve been trying to get done, are finally going to get done, and that’s something to look forward to. But there’s a lot to do, with many little details to get worked out. So — much as I’d like to — I can’t just take myself out of “the flow” and camp out in a pool of warm mineral water.

It’s a goal for future years, but not this year.

Because now that January is here, it seems like everything around me has taken off at top speed. The last 10 days feel like the longest month, and I’ve been scrambling to keep up. Work has been extremely busy, and things at home have been picking up speed. There are health problems with friends. Changes to insurance coverage, that I have to track down and keep on top of (so I don’t have to pay hundreds of dollars for a medication that should cost 5x less). There’s lots of personal drama. Tears. Anger. Mortality. Asking “Why?” And more.

Oy. I could seriously use a break from all the carryover drama plus from last year the brand new drama for 2018. I really could.

Anyway, my life is mine to do with as I please, and with each passing year, I’m more interested in doing something substantive with it. I’ve always been interested in doing that — motivated… driven, even. It’s just that now I actually have a much better idea about how to help it all happen. It’s one of those weird autistic things, where I’m clueless for decades, then all of a sudden — SHAZAM!I get it, and I can suddenly move forward in leaps and bounds.

I’m “funny” that way.

But that gives me hope in a roundabout way. Because if I can flounder and struggle for oh, so many years… and then suddenly — woo hoo!  the path opens up for me in some ways — that means that it can open up for me in others, at any given point in time. And being clueless and stumbling around right now, doesn’t mean I’ll be stumbling around forever in a clueless fog.

Which is, for me (not speaking for anyone else), why suicide is never a viable choice. Because I never know just when things will suddenly open up for me, and stuff that used to be so awful and unbearable aren’t even “blips” on my proverbial radar. Things can turn around for me, just like that, so that’s the state of mind/body/spirit/logistics that I have to hold out for. It gives me something to look forward to, that’s for sure.

So, yeah. My life is there for me to do as I please. It’s not always pleasant, and it’s often pretty painful, to be honest. But I persevere. I hang in there. And ultimately, (many) things turn around. That’s what I’m hanging onto right now, as I lumber through the first weeks of the year like a hibernating bear waddling through the narrow aisles of an antiques store. Maybe some of the stuff I bump into is valuable, maybe it isn’t. Maybe some of the stuff I knock off the shelves is priceless, maybe it isn’t. A lot of that’s in the eye of the beholder, so I can’t get too worked up over things I mess up or break.

I do that. It’s a skill.

But enough about me. I have to go get some work done. It’ll all get done, one way or another, and a lot of it won’t be very enjoyable. But eventually the situation will change, and I’ll move on to something else. One thing at a time, one step at a time, just taking it as it comes, and doing my best under the circumstances… which is pretty danged good, considering how bad / blah / disconnected I’ve been feeling, lately.

It’s all an evolving process. That’s for sure.


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Just a few more days, till I can get back to my routine

pocket watch on map with sandOh, 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.

pug looking sidewaysParallels 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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The Upsides of #Alexithymia

tree by lake with moon and stars overhead

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 forced me — 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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Two weeks off is about right. Looking forward to getting back.

road through snowy hills with small shack beside the roadSo, I’ve got another five days, till I go back to work. That gives me time to take care of more chores, organize myself, and finalize some stuff I’ve been needing to finalize.

It’s cold and snowy, which means I’m not going out much. I went for my first long walk, a few days ago, and the fronts of my thighs had lost feeling by the time I got back. My interoception (my internal sense of my body) isn’t always great, so there’s a certain risk with that.

So, I keep it simple and just avoid the situations that could be dangerous. Not always the best thing to do, but heck, I’m on vacation. Why suffer? And why put myself in danger? I know, I’m being dramatic. But at the same time, there’s always some element of risk, when I go out on the roads, especially in the winter. I have to share space with passing runners and cars and trucks, and the path is narrower, with less room on the shoulder — or no shoulder at all — because of all the snow.

It’s definitely less safe, than it is in the summertime, also because drivers are tired and distracted and might be having emotional issues leftover from the holidays.

But I’ll go out later, if I feel like it. I just don’t really feel like it today.

Yet.

Anyway, I’ve got five days off, pretty much. The days leading up to Christmas definitely weren’t vacation days. I had a lot to do, and that involved doing stuff with my partner, whose presence complicates everything for me, especially when we’re out in public. I love her dearly, I’m just very short on resources when I’m out in the Christmas throngs, which makes me a terrible partner.

I’m not being hard on myself. It’s an objective fact, which I try to mitigate, with greater or lesser success.

Well, so it goes. Lessons learned, each year. It’s all a process, and I’m feeling really positive about my intentions for next year. Of course, feeling good is fine, but doing better is really the goal. Happiness with myself (self-satisfaction, let’s call it) is fleeting. Especially when I see myself drifting from a path I set out for myself before, but failed to stick with it.

As 2017 draws to a close and the “new year” emerges from behind the horizon’s line, I think about all the ways I have come up short, this past year. I’m not being hard on myself. It would be worse, if I didn’t take myself to task for my failings. That would be the ultimate injustice to myself… to treat myself with kid gloves and tell myself that I can’t possibly do any better. I can always do better. Most of us can. We may have serious limitations, but those are rarely all-encompassing, and there are so many other ways we can compensate and make up for our limits in one area with strengths in another.

Autistic or not, we all have that in common. Autism just has a way of making everything seem / feel more extreme. And in many cases, it is.

So, I start my look to the future with a look behind, to find all the places where I can improve and make my coming year different from my last.

And that puts me in the mood to move forward. To make the most of these last five days, intentionally examining my life and seeing where I want my choices to take me, this coming year. I know I have issues I need to deal with — sensory issues, light, sound, touch, that are all made worse by fatigue exhaustion… balance issues, executive function issues… again, all made worse by being worn out. Just getting better sleep and giving myself more room to breathe on the weekends, really planning out my life and sticking with my routine… that can do wonders for me. It always does, when I stick with it.

I just get into a “brat” frame of mind, where I don’t wanna do what I have to do. Waaahh, waahhh… I can be such a whiner, sometimes. Self-pitying and downright lazy. That’s not me being unfair to myself; it’s calling it as I see it. And I have things I can do about it all.

Like feed myself. Feed my mind. Build myself up in important ways. I tend to push myself so hard, I don’t get enough recovery time. And that’s gotta change. Honestly, I need to do better about getting input, not just constantly cranking out stuff. It’s not difficult, actually. I know what feeds me, and it’s all about good quality ideas, images that lift me up and inspire me… actually reading the magazines I get for free from my frequent-flyer miles I earned years ago, at a past job. The magazines are totally free. And I love reading them. So, I need to do that more. Work that into my weekly routine. Just allow myself the time to work through them.

And less social media. It sucks up too much time, and it doesn’t always feed me. Sometimes it does, but it rapidly devolves. (That reminds me, I need to mute some people who have become exceptionally strident and combative, of late, without the self-criticism that I feel is requisite for taking up thought-battles.) My Facebook involvement is almost nill, and that’s been a huge benefit to me, since I backed off on it. Twitter often seems like a collection of ideological bore-holes, where everybody’s looking for water or oil or some other precious substance, but they’re tightly constrained in their own narrow sphere of influence. I do value Twitter for the links to research. But honestly, I can find that same stuff through a well-crafted Google search. I just have to look for it.

Most of all, this next year is about me taking responsibility for my own inner state. Autism becomes problematic for me, when it’s not properly managed. Of course, external situations play a role. Wouldn’t it be nice to work and live in a world that isn’t full of artificial scent and fluorescent lighting? But I’m one person with a relatively uncommon “constellation” of traits, and it’s simply not practical to expect the world to accommodate me. Anyway, that would actually take away from my adaptive resiliency. I need to adapt. I need to be resilient. I seriously cannot go through life expecting trigger warnings at every turn, so I can avoid unpleasant or taxing situations. If anything, the unpleasant and taxing situations make me stronger.

Do they cause suffering? Of course! Life is full of it, and if I actively avoid suffering, I actively avoid life. So, I’ll take the suffering, use it to learn, and move on. That’s always been my attitude, and it’s seen me through so many challenging situations that cause other people to curl up into the fetal position and/or basically disappear from their own lives.

Other people can do what they like, but I’d rather become toughened to the suffering and actively incorporate it into my life. I’ve never been one for weeping about the unfairness of life. That’s just the state of the world. Never, ever, will the world reach the levels of fairness that my sensibilities require. Do I lose my shit and attack the sources of unfairness, in an attempt to make everything more just and equal? What would be the point? The moment one unfairness disappears, another shows up. It’s just the nature of things, and it’s a much better use of my time to become inured to my own suffering, so I can do my part for others.

Now, I’m not talking about ignoring the systemic injustices that are cemented in place by ignorance and raw lust for power and control. I’m talking about the injustices that I perceive in my own life, which impact me personally. I just can’t let my hypersensitivity (which is a simple fact of my personal makeup) run the rest of my life.

Ah, I see my word count has exceeded 1,000 a few paragraphs back, so I’ll stop now. Gotta have some discipline and keep myself headed in a productive direction, instead of letting myself go on and on. People are busy. Time is precious. I’ve got work to do, so now I’ll go do it.

And prep for my return to the regular world with a renewed vigor and sense of purpose.

“Old School” Autism Adjustment

school building in snow on film strip

I’ve been thinking a lot lately about how I structure my life. And I’ve been thinking about how I handle myself, regardless of what comes along.

Because I do. Of course, it falls down, here and there. Of course it does. I’m human. I have finite resources, and like a high-performance race car, I need to pull off the track, every so many revolutions, and get tuned up. I’m no different than a Formula-One race car, in that respect. High-performance vehicles, including my body and brain, need more specialized care on a more frequent basis.

That doesn’t make me disabled. It makes me high-performance with specific needs.

Interestingly, nobody’s calling F-1 race cars “disabled” because their tires need to be changed more frequently than your everyday family sedan.

Please.

And here’s where my New Year starts out a little early. I’ve got this new resolution to really “reframe” (much as I hate that word) the way I talk about Autism. Hmm… let me think of a much better word than “reframe” — okay, let’s use “redefine”. Because that’s essentially what I’m doing. The words I use add shape and texture to the concept of my Autism, and by using different words and different mindsets to talk about that central part of me, I can literally change the quality of my life and the thoughts/concepts that guide it.

If others “get it”, then great. If my example helps them to redefine their own experience (whether it’s Autistic or not) and create a more self-aware and self-directed way of life that’s got less pain and suffering, then great. But my redefinition isn’t for the sake of anyone else. It’s for my sake. I am Autistic, after all. 😉

One thing driving this shift is my experience of looking through my library of images I’ve used in blog posts over the past year or so. I’ve been actively blogging here for nearly two years. I started this blog back in June, 2008, then had to tend to other things, and I came back in February, 2016. Some days, it seems like a lot longer than two years, and other days, it seems a lot shorter.

I’m alexithymic like that.

Anyway, I noticed that so-so many of my images have really negative connotations for me. There’s a lot of suffering archived in my media library. And while searching in vain for some really uplifting images (or just some pragmatically strength-inspiring pics), I came up with nothing, time and time again.

sunflower

Oh, here and there, I found an image or two. But on the whole, things look pretty grim. I’d have to say the ratio of gloomy:gleeful is about 9.24:1.

So, that’s gotta change.

I’ve talked before about how we need more Autistic Joy, and I still believe that. But it’s not enough to mention it now and then in a blog post. It’s got to be the main theme in all my blog posts. And if not outright joy, then at least some discussion of how I’m managing my Autistic life — and doing it successfully.

Oddly, I feel as though I may be failing “the cause” as I write this. Because Autistic people are supposed to get support and resources for our difficulties. Yes, when appropriate, I absolutely believe that. If I am completely and totally unable to help myself, then I do need extra help.

The thing is, I’m rarely, if ever, completely and totally unable to help myself. I may have lost track of all the ways my system was being slowly eroded by circumstances beyond my control. I may have allowed myself become so run-down that I lost my normal capabilities. I may have gotten so wrapped up in what I was doing, I forgot to eat, drink, sleep, and empty my bladder, and that’s making my life a lot more “interesting” than I’d like it, as I gingerly wobble across the house to get to the bathroom.

But those things are on me. I may be Autistic, but I’ve helped to create those conditions. I didn’t properly manage my life — which I’m perfectly capable of doing. I didn’t take good care of myself — which I know I need to do, so what’s my excuse? I didn’t set a timer (which I know I sometimes need) to eat, drink, sleep, and keep track of my bladder’s state. Self-created suffering is not the sort of thing I can use to demand more services for my situation.

It may sound like I’m being too hard on myself, but I’m not. I was raised to know better, and to do better. And I was raised in a world where I was expected to take responsibility for myself, even for the times when I struggle. Especially for the times when I struggle. Because everyone is dealing with something pretty Big, and they don’t have extra time and attention to devote to my own self-created issues.

If I’m capable of discerning my difficulties (which I am, more than anyone else), and I’m able to learn from my experiences (which I can, and do, regularly), then it’s my responsibility to make provisions for my situation. Manage my issues. Restructure my life so that I’m not suffering, if it can at all be prevented. And make the damn’ effort to not get myself into taxing situations that I know, from experience, are going to make life worse for me — and everyone around me.

Yeah, I’m old school. That’s for certain. My approach isn’t for everyone, but it most certainly is for me. And as one contingent of Autistic folks focuses on the disability side of things, I’m focusing on the “Autistic ability” side of things — because our lives are different and shouldn’t be expected to be exactly the same. And because I’ve figured out how to live my life as an actually successful (and yes, I’m using the word in its true sense) Autistic adult. I was as a successful Autistic child, teen, and young adult. I just didn’t realize it, thank you alexithymia. Turns out, the very thing that makes it possible for me to function effectively in situations that freak other people out, actually hides that effectiveness from the rest of me. So, I’m a heck of a lot more successful and happy and content than I realize.

Damn… I need to write a whole post about that, sometime. Or maybe I already have… Anyway, that’s another idea for another day.

So, with the New Year just around the corner, it’s time to get some more positive pictures in my media library. And get some more pro-active, pro-Autism posts in my blog. Staying stuck in how horrible everything is… well, that doesn’t serve anyone. Least of all me.


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Last-minute Christmas shopping went well, all things considered

Big box store interior with people walking through aislesMerry 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.

Mannequin Christmas tree
For the record, people, this is not stylish. It’s a little scary.

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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Last-minute Christmas shopping – I gotta do what I gotta do

big box store interior
Sometimes, it’s just unavoidable.

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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Dakota Fanning Is Star Trek’s Biggest Fan in Please Stand By Trailer

Dakota Fanning stars as a young autistic woman who escapes from her caregiver to submit her epic Star Trek script in Please Stand By.

Magnolia Pictures has released the first trailer and photo for Please Stand By, which tells the epic story of one big Star Trek fan trying to get her story out into the world. The film had its world premiere at the Austin Film Festival in October, while also screening at the Rome Film Festival and the Virginia Film Festival over the last few months. While this isn’t exactly a Star Trek movie, it will be interesting to see how Star Trek fans spark to this unique story.

A young autistic woman runs away from her caregiver in order to boldly go and deliver her 500-page Star Trek script to a writing competition in Hollywood. On an adventure full of laughter and tears, Wendy, played with exquisite delicacy by Dakota Fanning, follows the guiding spirit of Mr. Spock on her journey into the unknown. “It is there for us to conquer, not to fear.” Directed by Ben Lewin (The Sessions) and also starring Academy Award Nominee Toni Collette, with a special guest-appearance by Patton Oswalt.

Check out the rest of the info here. The trailer looks great!

What if non-#autistic “pretend play” is pathological?

board game with pieces
I’ve been thinking a fair amount about so-called “theory of mind” (ToM), lately, and I keep coming across references to it. Take, for example, the recent paper “Theory of Mind Deficit Is Associated with Pretend Play Performance, but Not Playfulness, in Children with Autism Spectrum Disorder” They talk about how “pretend play” is impaired in autistic kids (oh, sorry – “children with Autism Spectrum Disorder”), and how “ToM significantly predicted pretend play variables”.

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.

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