When the #Autistic medical model has gone the way of the dinosaurs…

dialog between mother and autistic daughter explaining the old medical model of autism

Fantastic post from Luke Beardon.

HELLO MUMMY – A (FICTITIOUS) CONVERSATION FROM THE FUTURE

Girl: Hello Mummy.

Mother: Hello Darling.

Girl: Mummy, I want to ask you some questions.

Mother: Ok – fire away!

[Pause]
[Pause]

Girl: Fire away?

Mother: Sorry Darling, silly Mummy. I meant please do ask your questions.

Read the full (most excellent) post here.


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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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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.

Just a few chores to get done…

rope caulk window in winter
It’s that time of year again.

The nice thing about having time off work, is that there’s no set routine for me to stick to.

The downside of that, is the very same thing — there’s no routine for me to stick with.

So, that means I have to work a little harder during my “time off”. I have to put more thought into how I’m going to spend each day. I have to put more time and energy, period, into everything I do.

It’s ironic — the time when I’m expecting to be able to rest, is the time when I get worn out more. But at least I get my naps in. That’s something.

I’ve got to put rope caulk around my windows today. No excuses. It’s getting into the single digits at night. I’m leaving my spigots dripping a little bit, so my pipes don’t freeze, like they did a few years ago. I’ve got the heat turned up. I have firewood put with easy reach in my garage. And I’ve got three days’ worth of hearty chicken-noodle stew in the refrigerator.

Rope caulk is non-negotiable in this house. Its windows are original to the house, dating back to — gasp — 1972 (younger than me, actually), and they get drafty. Personally, I prefer it that way. Because a tightly locked house is a house that doesn’t breathe. And houses need to breathe. I don’t care for getting trapped in a house with off-gassing from whatever stuff I hauled inside with me. Keeping a slight breeze going in the house keeps the air from stagnating. And it saves me from having to circulate with central air, etc.

Rope caulking is my annual admission of the fact that it’s friggin’ cold outside, and it’s not warming up anytime soon! I can let things go indefinitely, especially because I like to have a little chill in the air at times. But eventually, the New England winter gets the upper hand, and I pull out the rolls of corded putty that gets pressed into the seams and cracks around all the open-able windows in the house.

It’s good practice for me, actually. It helps me focus my attention, and it helps me strengthen my oft-flagging ability to keep my focus on one thing for extended periods of time. Rope caulking all the windows — 8 downstairs and 10 upstairs — isn’t instantaneous. After a while, the caulk makes my fingers tacky, and it becomes a sensory issue. But I know it’s going to happen, pretty much when I get to the the 10th window, so I have no excuse for getting bent out of shape about it. Yes, it’s uncomfortable. Yes, it sets me off. Yes, it makes it hard to concentrate. But that’s where taking a break comes in. And I can always step away for a few minutes to get something to eat or drink, wash my hands, and gather myself before I go back in.

I used to get so bent out of shape, when the caulk would stick to my fingers. But please. That’s just caulk being caulk. And me being me. So, enough of the upset. Just take steps to deal with it. And git ‘er done.

Speaking of which, it’s time to gather up my various breakfast dishes and cups, wash up, and dig out those boxes of rope caulk from the bottom of the pantry storage bin.

They’re in there somewhere. I’m sure of it.

Off I go…

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!

Autistic family, autistic irritation (plus, why I’m a terrible 21st Century author)

picture of a pencil with a sharpener and shavings lying on a blank notebook

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.

Bliss.

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.

For once.

autistic country girl

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