Stoic on the Spectrum: Consider how quickly all things are dissolved and resolved

arrows in all directionsToday’s brief note comes from from Marcus Aurelius’ Meditations

IX. Consider how quickly all things are dissolved and resolved

… the bodies and substances themselves, into the matter and substance of the world: and their memories into the general age and time of the world. Consider the nature of all worldly sensible things; of those especially, which either ensnare by pleasure, or for their irksomeness are dreadful, or for their outward lustre and show are in great esteem and request, how vile and contemptible, how base and corruptible, how destitute of all true life and being they are.

So, things come and go. Pain comes and goes. Energy and vigor come and go.

One day, I’m fine. The next, I’m pretty much disabled. That, too, comes and goes. And there’s really no way to predict how things will be. I’ve tried. Oh, how I’ve tried. Doesn’t work. Best thing is to just stay loose and roll with it, so to speak.

“Consider the nature of all worldly sensible things…” All of them are ultimately resolved. They, too, shall pass. And if I wait for that to happen before I go on with my life, I’ll never get anything done. I won’t have a life worth living.

So, today, as my bones ache and I have less feeling and coordination in my arms than usual, I’m easing into my day… Doing my exercises that ease the pain and increase movement, so I can at least do the bare minimum… drinking plenty of water… getting some good food in me… doing less of a workout, this morning, but a workout nonetheless. And reading.

Reading things I love, that lift me up and brighten my day.

That’s certainly something.

Giving up, every now and then

pug looking sidewaysMy body gives out on me, on a semi-regular basis. I’m “chugging right along” just going about my regular business in my hyper-focused way… my mind frolicking through veritable fields of fascination and whimsy… spending hours up on hours on maintaining a Single Point Of Focus to whatever needs my attention at the time.

And it’s all going great. I’m in a groove. I’m really making progress.

Then my body gives out. I’ve overdone it. Again. I’m in such pain, I can barely move. I can’t do the things I normally do, because the usual movements turn my joints and muscles and connective tissues to glowing embers of white-hot coals. I can’t sleep well. I can’t think clearly. The routines I rely on to maintain homeostasis in my life and keep an even emotional keel… they all fly out the window. And I’m cast adrift in the proverbial sea, without sails, without rudder, without anchor.

All I can do, is recover. Watch what I eat. Drink more water. Cut out the sugar and other things I’d been eating which are Just Not Good. Be gentle to my body. Rest and release and do what I can to strengthen the parts of me that got weak during my spate of hyperfocused singular attention and activity. Stop doing the things that cause me pain (much of the most important things I normally do), and wait it out, while making minor adjustments to my physical experience.

New exercises. New movements. Or just no exercise or movement at all.

This started about 30 years ago, when I was out of college, was working full-time, sitting at desks all day, and not in a very happy life situation. I had a few car accidents in the course of a year’s time. They were “just” fender-benders, but they really messed me up. And the pain started. Crippling pain. Agonizing. Unavoidable. Inexplicable. And everything the doctors told me to do (especially avoid exercise), just made things worse.

I managed to extract myself from that prison of pain over the course of about 5 years. It took a little longer before I was essentially pain-free. But every now and then, it comes back. I injure myself and I don’t heal properly. Or the repetitive motion (combined with very little movement) takes a toll. And I end up back where I was 30 years ago: incapacitated, and unable to explain or excuse myself to anyone who doesn’t know what it’s like to go through these pain-recovery cycles.

I’m smack dab in the middle of one of these recovery cycles, right now. I’ve had varying degrees of back and shoulder pain, over the past several years. It comes and goes, depending on how (and how much) I’m moving. Sometimes I have a flare-up that’s obviously related to excess — a whole lot of new physical activity, a lot of pushing and pulling heavy weights, different kinds of movement that are very different from my usual movements. Other times, I’ll be wracked with pain for no apparent reason, and nothing seems to alleviate it, other than rest… which cuts into my exercise routines and weakens me even more, on down the line.

I know what did it, this time. Snow. Lots of it. Multiple storms. Lots of snowblower activity. Pushing and pulling and lifting and throwing. Plus, scoliosis. That makes everything worse.

Of course, it doesn’t help that my preferred state is one of absolute stillness of body, while my mind ranges freely through conceptual territory it loves to explore. I can sit for hours… motionless, rapt, totally absorbed in what’s right in front of me… blissed out with all the mental exercise I’m getting. The lack of movement really brings the pain, when I start to move again. And it can last for days.

Of course, typically, it doesn’t set in until I’m days or weeks into a “reverie”. And then it takes 2 – 3 times as long to reverse the painful effects of all that motionless mental activity. If I can reverse them at all.

The thing that gets me most from this, is how my body then keeps me from doing the things my mind wants to do. I can’t sit at a desk and write. I can’t type on my laptop without pain. I can’t do much of anything without discomfort, which is incredibly distracting and keeps me from thinking clearly. At times, I can’t do anything at all, other than just drag my “husk” through my days, discharging my work duties on autopilot and hoping nobody notices how marginal I am. I can only manage the absolute basics.

And that’s just so crushing. Because my mind relies on being able to do much more than the basics. It needs to range in its own territory and get free of the constraints of the mundane / neurotypical world. I can’t be myself. I can’t be Autistic.

Oh, pain indeed.

So, today, I’m taking it easy on myself. I have a light schedule, today, and I have the chance to get a little nap. I’ve got some new exercises / movements I can do that are already helping. But it’s going to be an extended road back. This much I know, from experience.

That being said, it’s time to step away from the keyboard and take care of myself. I have no idea how active I’ll be, here, in the coming days and weeks, but I certainly hope I can muster the strength, energy, and enthusiasm, to keep exploring the things I love to explore.

I’ll need to give a bit of it up… ultimately, my hope is that it’ll come back to me.

Here #IFixedIt – Ian McClure’s truly bizarre riff about #Autism

bored emoticon mehIt’s been a strange day. Apparently, an eminent psychologist went on about Autism in some pretty bizarre ways — all the more bizarre, because apparently he helps determine direction for agencies(?)

He repeatedly talks about “autism” like this — see the transcript here. And I couldn’t just sit back and not say anything. Seriously, conflating “autism” with environmental or sensory distress experienced by Autistic people is very mid-20th century. And it’s got to stop.

I’m on a “tear” about how we need to stop referring to environmental/sensory distress experienced by Autistic people as “Autism”. It’s not Autism. It’s the result of external circumstances hobbling us as Autistics.

Take a look at what he says below, and note just how nonsensical his ideas sound, when we consider them in the true light of the Autistic experience. Italic emphasis  is mine. For effect.

 

Ian McClure (IM): The question I am trying to ask here is does it help us when we are trying to work with autistic people in environmental or sensory distress to actually say maybe this person is emotionally stuck at the level of a two year old, just hold that (inaudible) in your head for a bit

IM: and ok so we are coming back in hopefully, we are coming back to this thing about egocentricity, now what I, I have been wondering about is, if we did think about autistic people in environmental or sensory distress as egocentric in the sense of a toddler and if we do remember this whole phenomenon of regression, emotional regression. That suggests that maybe there would be a process for a n autistic person in environmental or sensory distress, right at the beginning of their life, which was very stressful. Ok so I want you to just sort of entertain that idea in your head. We’ve got somebody that right at the beginning of their life, that something really stressful happened to them that means that they cannot move forwards from that emotional regression stage, from that egocentric phase, and so the question is what could that be? What I am wondering about is, is it possible, that autistic people who end up in environmental or sensory distress, in that first year of life, they are not much different to everybody else? Is that possible? And that what we have got is a situation where something happens in that first year of life which does then change the way that that infant is developing. Maybe environmental or sensory distress in a way is a social coordination disorder there’s something about the way that we coordinate ourselves socially, the cerebellum is doing that. We know that autistic people in environmental or sensory distress often have difficulties with these systems but we don’t really know why. Maybe it goes back again to something to do with maybe two different human species came together and what you’ve got is a genetic mess that isn’t quite right, that something is not quite right.

IM: So I am wondering about whether we should think about the idea of what I call a kind of internal exponential trauma caused by the sensory and the neurological challenges in the brain of the autistic person in environmental or sensory distress one of the reason I am so keen on this idea is, this idea which I think a lot of us have who work with autistic people in environmental or sensory distress, is that somewhere inside that person is a, dare I say it, normal person and this is the experience of parents, the desperation (inaudible) is I know there’s somebody in there if I could only just get at them and reach them. Now I know that that has been dissed a lot and people say oh you’ve got to move on from that, that’s just emotional, you know, it’s just the emotional (inaudible)

….

IM: Maybe we need to go right back to what people like Freud and Bleuler and Kraepelin and have a look again at what they were thinking because what happened in the 1950s was that whole thing got chucked out and DSM and so on and all these other things are just not interested in it. And the way it is going forward now is that the research that is being done by psychiatrists by academic psychiatirsts in places like London and America and stuff like that is very focused on looking for drugs. They are looking for drugs to answer these behavioural differences, and that is what they are doing they’ve got this magic bullet idea, if we can get a drug for that just think how much money we can make. And that’s a big motivator. And I know I am sounding very cynical but I’m afraid, you know, that’s going on.

IM: Ok so I am just going to summarise, In environmental or sensory distress my experiences as a clinician has been that the thing that is really challenging is this own agenda behaviour, that’s not in anyway minimising all the other stuff, but what it boils down to is time after time you know in the clinic this person is causing havoc because they won’t give up on their agenda. So then I started to think, could that be about egocentricity? And then I started to think, hmm, what about, what about something has gone wrong that has meant that that person has got stuck in the egocentric phase. Does that help us, think about it? what could that be? What could that be? If that was true, what could it be? We’ve got clues, we know that autistic people in environmental or sensory distress are in some way experiencing the world differently and that can be incredibly distressing for them. We don’t know a lot about it but we’ve got some clues and could that be enough as an internal stressor and are we having possibly a traumatic encounter there which is exponential because of the massive development that is taking place in the first year of life.

Anon (Name to be added if they give permission): My name is (deleted), I am a clinical psychologist and Ive spent most of my working life asking autistic people in environmental or sensory distress what they think and feel, I’m also neurodevelopmentally challenged myself and I really found thinking of myself as a different species and a genetic mess, I’m also a mother of a son who is a genetic mess, if we don’t have autistic people in environmental or sensory distress and people with dyspraxia and dyslexia and adhd in our society then it would be much less rich. The reason that those things were thrown out many many years ago is that they were wring. And to start to move back to things like refrigerator mother and prevention of environmental or sensory distress, I think is not appropriate.

(Lots of applause)

IM: Shall I respond?

IM: I never said anything about refrigerator mothers and I acknowledge that that was a dangerous area that went, you know, clearly wrong but I think it is great that I have had this response actually, because I think it is important to get a reaction like that and I’m pleased that you have reacted like that. All I am doing here is asking questions, I don’t know the answers to these questions. What I am trying to do is I am trying to make sure that we don’t get stuck in a silo mentality, I want us to keep our eyes open about environmental or sensory distress and I do not mean to cause any offence by saying the things I have said but it’s a free country, last time I checked it’s a free country and we are allowed to say what we think and I am basing this on my experience with my patients over twenty years so you know that is just my experience. I am worried that these people are being traumatised by something that is going on in side their minds, that’s all I’m trying to say to you, so thanks a lot (applause)

So, yeah… If you look at Autism just as something that occurs in the brain, you get these kinds of ideas.

But if you understand Autism as something that shapes your every experience in a physical, mental, emotional, and spiritual way (with an emphasis on the physical which can lead to a ton of distress), that changes it, doesn’t it?

It changes everything.

Which is where I’m hoping the Autism research community goes. Away from the “egocentricity” idea. Away from the “own agenda” concept. Away from the belief that meltdowns are “tantrums” which we choose to leverage to get our own way. “Creating havoc” and all that.

The good part is that people are speaking up about this.

The bad part, is that we have to.

 

Sharing from ‘Autism’: A new era for autism research, and for our journal

No more puzzle piece used on the cover of the journal 'Autism'

Big news – The journal Autism will no longer be using the puzzle piece on their cover.

Plus, they’re shifting their approach to research:

… Precisely because it is a common endeavour, autism research requires the participation of that broad community on fair terms. It is not right that one group holds all of the influence and power. If any group, or collection of groups is unattended or their opinions discounted, then they are being treated unfairly and in a way that does damage to autism research itself. The core ethos of this journal must include ensuring that everyone who participates in autism research has their views taken into account.

This, in my view, is huge.

And it’s a welcome change. I encourage you to read the whole announcement. It’s not long, but it’s chock-full of encouraging signs.

Read it by clicking here.

“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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My spine is bent – but I am not

x-ray of ribs and bent spineSo, ever since I found out the details about this scoliosis business, I’ve been stretching my neck and back in different ways. I can really tell a difference between my left and my right. The bend in my back is to the right (the x-ray above is the view from the front), and my left is tighter, much less mobile, than my right.

I’ve been focusing more on getting my left side to loosen up, and it’s been working. Suddenly, the colors are brighter. And I get this amazing rush of energy… where I typically have a nagging, dull, dragging sense. I’m also not so down on myself about not being able to stretch out the left side of my back. No kidding — my spine is bent around to the right, pulling stuff out of alignment. All 250 mm of it.

I need to look up those vertebrae. Which ones are they? A bunch of them… T3-8? T4-9? Who knows? I don’t have the full back to count from. So, I’ll guesstimate. Anyway, there are 9 of them involved, that I can see on the x-ray. I love imaging. Especially my own. I can spend hours examining one x-ray or an MRI. And with a 3D viewer, MRIs get even better. Pretty amazing, actually.

Anyway, I was talking to a guy I work with who also has some scoliosis. He was identified when he was a kid, but they never did anything about it. He’s had a bunch of health issues, but who knows how much it has to do with his spine? He does have back issues… but he’s pretty philosophical about it.  He doesn’t make a big deal out of it.

I really don’t want to, either. I mean, I’ve been living this way for years and years — decades, really. Now I’m going to get even more “bent out of shape” about it?

I’d rather not.  So, I won’t.

I’ll do my daily exercises, do more stretches, take care of myself, and keep chugging along. It’s what I do best.

Doing a better job of working with doctors

germ
I don’t always know what’s going on with me – so I need to change the way I handle my working relationship with my doctor(s)

Since looking at the visual of my curved spine, I’ve noticed just how “lop-sided” I can be. I seem to lean to the left which is how my spine is abnormally curved. And my left side is a lot more tight than my right side. I suppose it makes sense. If I’ve been skewed to the left for however many years, then it stands to reason that my muscles on that side would be at least a little shortened over time.

Exactly how long things have been this way, I’m not sure. I was told that I had scoliosis, about 20 years ago, but the provider who talked to me didn’t give me much information. She just said, “scoliosis” and moved on. Literally. Just one word, said in a whispered, almost disappointed tone of voice. A woman of little words… And I didn’t follow up.

I didn’t understand what it meant. I wasn’t sure how bad it was, and she didn’t elaborate. That’s a little disappointing.

I can’t fault her, though. We didn’t have a close working relationship — or even a regular one. I saw her maybe twice over the course of a few months. And that’s not nearly enough time to develop rapport. It stands as a prime example of the kinds of situations I’ve been in with clinicians, time and time again. I only see them every now and then, and I never develop enough of a rapport to feel comfortable with the requisite back-and-forth I need to exchange decent levels of information… either from me to them, or the other way around.

The prospect of continuing this trend doesn’t appeal to me. The more I think about it, the less comfortable I am with just letting things “ride” in terms of my health. I have more responsibilities now than I had, 10 years ago. And I’ve gotten less “spongy” than in the past.

Stuff doesn’t pop back into place, like it used to.

So, I’m thinking about different ways of engaging with my doctor(s). I don’t want to get all into the “Dude, I’m autistic”, because that means different things to different people, and I don’t want their presuppositions overriding my own individual situation. I want to approach my situation based on individual issues — the ones that are problematic to me, versus the ones that they think are a problem for me.

I think maybe it makes sense to approach my PCP/GP and let her know that:

  1. My sense of pain is variable, and I don’t always know when something that’s “up” with me is a real issue. Some serious stuff, I don’t notice. And other things which aren’t that major can bother me to no end. Like… not noticing my ribs were giving me problems for a few days, then all of a sudden, they got worse, and I didn’t know what to do about it… got an x-ray, got bloodwork, and nothing came up at all. Plus, my symptoms started to subside within 24 hours of getting checked out. I could have easily left myself alone, even if things had been serious, and gotten into more trouble. Or not.
  2. My sense of symptoms in general is tricky. I have “let myself go” in the past to the point of nearly having my eardrum burst, or having a really bad infection, or even driving myself to the doctor when I was fevered and had borderline pneumonia, because I didn’t really “get” just how rough things were for me.
  3. I may have a sense about what’s going on and what I need to do about it, but I’m unclear about what instructoins I’ve received and what they actually mean. I don’t always know what to expect as a result of things I do, like whether an ointment is supposed to sting or burn… or whether it’s normal for someone to experience “roid rage” when taking Prednisone… or how long I can expect it to take for something to clear up. Sometimes when I go to the doctor, things she says to me don’t even sink in until later, and I realize then that I have more questions.
  4. I need to take written descriptions and diagrams of what hurts, when I visit the doctor. I need to write things down ahead of time and share them with her. Upload them to the portal, too. The doctor at the urgent care place who ordered the x-rays for me really appreciated the notes I gave her, along with the diagram of where things hurt. I think it helped her have a better sense of what was going on with m

I’m not sure I’d need to actually go see the doctor each time — they have a portal I can use to ask questions — but sometimes it’s easier to communicate in person. I’m also not sure about the protocol for using the portal… so I’ll have to ask about that.

Basically, it all boils down to doing a better job of communicating with my doctor(s). I know I “fall down” in many respects (that’s just part of the magic of being me), so it’s incumbent on me to do something about it.

It’s not rocket science. I’ve got plenty of tools and capabilities I can use to augment my situation. And it’s actually kind of fun to design solutions for myself. I can design things better, in any case, than other people can. Because I have first-hand up-close-and-personal experience with all the sh*t that goes wrong along the way. I have a pretty good sense of where my weaknesses are, and I’m getting a better sense of where my strengths are, as I go along.

It’s all a process. And it’s the best kind of science.

It’s not my favorite necessity to sort out, but while I’m at it, I might as well have some fun with it.

So, apparently I have scoliosis?

x-ray of torso with spine bent to the side - scoliosis
Front view of my spine — it curves out to right side, with the inside curve on my left

I’ve been told, a few times over the course of my life, that I have a little bit of scoliosis. It never meant much to me, till I saw a recent x-ray of my back. See above.

It’s not so terrible – I’ve seen worse cases when searching the web. Still, it’s a little unnerving to actually see it. Having a visual is a lot more meaningful than being told about it by people who didn’t have much to say about it.

Either that, or they tried to talk to me about it, and I wasn’t following — because we were in a medical situation and I was overwhelmed by the circumstances, or I just didn’t connect the proverbial dots and know how to follow up to discuss it.

That’s the problem with me and doctors / other healthcare providers. The conversations tend to progress quickly and cryptically, and I don’t follow exactly what they’re saying because, well, medical terminology… and me not knowing when or how or why I should ask questions. And by the time I figure it out, the window has closed, the opportunity has passed. So, I go on with my life, making the best of things, without actually having all the information I need.

Because buried in there… somewhere… is additional data I didn’t get a chance to follow up on.

Well, be that as it may, it doesn’t stop me from following up afterwards. And so I do. It looks like my scoliosis is not so, so terrible, and I might be able to address the issue with some stretching. That’s not going to make my bones straighten up, but it can improve my circulation and muscle tone. Also important — keeping my upper body strength, so I don’t get pulled to one side all the time.

Come to think of it — hey! eureka! — I have issues with the left side of my body being tighter. If the curve bends my spine farther to the right, it looks like it’s pulling my left side down, which is consistent with my experience — I’ve had real problems with my left shoulder and neck being so, so tight. And I can’t seem to get them to loosen up. Well, yuh… if my spine is literally pulling them down, it’s gonna be a little hard to get them to loosen up.

Unless, of course, I take extra measures. Maybe I can help myself, to at least some degree. That’s what I need to find out… That’s what I need to try.

And so I shall.

I have to wonder, what’s going to happen to me when I get older?

old woman with face in hands
It worries me, to be honest

I was talking to a couple of different folks over the past few days, and the question of aging came up. I’ve got a birthday in another month (exactly), and I always think about my “trajectory” ’round about this time of year.

How have I been doing over the past year? Am I happy with my progress? Where could I have done better? I can always do better, so where can I make some positive changes?

And while I’m actually doing really well with myself, right now — I’m healthy, I’m happy, and I am so much better able to manage, now that I’ve got the whole Autism mystery identified — I wonder what it will be like in the future.

How will I get along? I don’t have many friends. My family isn’t in any position to take care of me. My nieces and nephews don’t seem to realize I exist, unless I’m standing right in front of them. I have no kids who can take care of me, when I’m older. And how long will I be able to work?

There are a lot of unknowns for me.

And the thing that concerns me most, is probably how I’ll handle myself in medical situations in the future. I notice myself becoming “more autistic” as time goes on, less inclined to communicate, stumbling more, shutting the world out more. While that’s all very well and good while things are going well, what about when I need help?

Will I even be able to articulate how and why I need help? Or to what degree?

I just don’t know.

And I need to figure something out. Because the unfolding pattern of that thought isn’t particularly encouraging.

Neuro research – Ouch! There #Ifixedit – Enhanced Hemispheric Symmetry of White Matter Microstructure in Autism

picture of two people facing each other, person on the left has a gray brain, person on the right has a rainbow colored brainSo, I came across an article from the Huff Post, earlier today, talking about how autistic folks’ brains are actually more symmetrical than neurotypical brains. That’s interesting. I followed the link to the original research paper, and this is what it said:

Reduced Hemispheric Asymmetry of White Matter Microstructure in Autism Spectrum Disorder.

OBJECTIVE:

Many past studies have suggested atypical functional and anatomical hemispheric asymmetries in autism spectrum disorder (ASD). However, almost all of these have examined only language-related asymmetries. Here, we conduct a comprehensive investigation of microstructural asymmetries across a large number of fiber tracts in ASD.

METHOD:

We used diffusion tensor imaging for a comprehensive investigation of anatomical white matter asymmetries across the entire white matter skeleton, using tract-based spatial statistics in 41 children and adolescents with ASD and a matched group of 44 typically developing (TD) participants.

RESULTS:

We found significant asymmetries in the TD group, being rightward for fractional anisotropy and leftward for mean diffusivity (with concordant asymmetries for radial and axial diffusivity). These asymmetries were significantly reduced in the group with ASD: in whole brain analysis for fractional anisotropy, and in a region where several major association and projection tracts travel in close proximity within occipital white matter for mean diffusivity, axial diffusivity, and radial diffusivity. No correlations between global white matter asymmetry and age or socio-communicative abilities were detected.

CONCLUSION:

Our findings in TD children and adolescents can be interpreted as reflecting different processing modes (more integrative in the right and more specialized in the left hemisphere). These asymmetries and the “division of labor” between hemispheres implied by them appear to be diminished in autism spectrum disorder.

Sigh. I mean, the language used is standard-issue “disorder” stuff, complete with using neurotypical folks as the control, and comparing us autistic folks to them. What, I wondered, would the abstract read like, if it were phrased differently? Granted, it’s not a huge change, and it doesn’t shift the world on its axis (and to non-autistic people who don’t have the level of attention to detail that we’ve got, it probably wouldn’t even register), but it does read differently. To whit:

Enhanced Hemispheric Symmetry of White Matter Microstructure in Autism.

OBJECTIVE:

Many past studies have suggested unique functional and anatomical hemispheric asymmetries in Autism. However, almost all of these have examined only language-related asymmetries. Here, we conduct a comprehensive investigation of microstructural asymmetries across a large number of fiber tracts in Autism.

METHOD:
We used diffusion tensor imaging for a comprehensive investigation of anatomical white matter asymmetries across the entire white matter skeleton, using tract-based spatial statistics in 41 Autistic children and adolescents and a matched group of 44 non-autistic (NA) participants.

RESULTS:
We found significant asymmetries in the NA group, being rightward for fractional anisotropy and leftward for mean diffusivity (with concordant asymmetries for radial and axial diffusivity). Symmetries were significantly enhanced in the Autistic group: in whole brain analysis for fractional anisotropy, and in a region where several major association and projection tracts travel in close proximity within occipital white matter for mean diffusivity, axial diffusivity, and radial diffusivity. No correlations between global white matter asymmetry and age or socio-communicative abilities were detected.

CONCLUSION:
The differences between Autistic and Non-Autistic children and adolescents can be interpreted as reflecting different processing modes. NA participants showed disproportionately more integrative in the right versus more specialized in the left hemisphere in, while brain activity in the Autistic participants showed more equally balanced the “division of labor” between hemispheres. Autistic children and adolescents appear to have more symmetrically connected brains.

See what I mean?

Just a different choice of words can make the whole thing read differently — and depathologize the whole concept of Autism. That would do wonders for the situation, in my opinion. Just stopping the assumption that the “norm” is the best, just stopping the talk about deficiencies, just stopping the use of words that totally disregard the chance that differences might just be good things. Just using words that call out the positives, rather than focusing on the negatives. Stop talking about what’s “reduced” and talk about what’s enhanced.

Of course, taking a positive approach — declaring that autistic folks are actually okay, we just function differently — doesn’t get grant money. It doesn’t get funded by people who are trying to save the human race from the scourge epidemic known as “Autism Spectrum Disorder”. It’s much more lucrative if you strike fear in the hearts of people, and then point them in a direction that might “solve” the terrible problem you’ve just identified. It’s typical marketing mentality, and in the intense academic atmosphere that a lot of researchers are under, I’m sure striking a dramatic note for the sake of procuring funding is one way to ensure your continued survival in what’s become a cut-throat industry.

But still.

It would be awesome if we could find a way to talk about autism in ways other than deficits and disorders. that would be awesome. Even more awesome, would  be talking about autism with pride. Imagine that.