Let’s see what I care about today…

three abstract people figures talking to each other
I have the day off today.

It’s pretty amazing, actually. I generally work 7 days a week at things other people need me to do. I don’t usually mind it, but it’s a glorious luxury to be able to take some time to listen to music, read, research, and discover new writers I never knew about before.

My latest discovery is Randolph Bourne, a radical thinker of the early 1900s (he died at the age of 32), who had a fair amount to say about war, society, and so forth. I don’t know enough about him, just yet, to really say much… other than he’s my latest discovery. And since he came from a town in New Jersey I used to live near, there’s a little bit of a connection I feel — if it’s possible to connect with a complete stranger who’s long dead, who hailed from a part of the world I tend to associate with some very challenging times.

I’m trying to not drink any more coffee. As much as I’d love to, it gives me a headache if I drink too much…. Water, though! I’ll drink water. That’ll be good.

I really do enjoy lazy Saturdays like today. It gives me time to unwind and just think. My day-job is way too frenetic, with far too much activity and – God help me – so much at stake!!! – it does get tiresome, I have to say. All that excitement… And for good reason. I do work in a situation that calls for plenty of vigilance and hyper-diligence. It’s just part of it.

Still and all, I do relish the times when I’m not in the thick of that.

Reading and exploring… following links at websites that uncover whole essays preserved for the duration of the website’s life… reading the words of someone I actually agree with… taking a break from the churn-and-burn atmosphere of the still relatively freshly minted 21st Century… reading the words of someone who knew how to spell, how to punctuate, how to put words together without autosuggest or autocorrect or auto-punctuate. What a pleasure. And most of all, to read the words of someone not propelled ceaselessly forward by the relentless fight-flight frenzy of the digitally driven world.

As time goes by, as I realize more and more just how much the digital world (and electronically delivered media in general) have fried my autonomic nervous system, and the ANSes of countless other people around me… as I witness increasingly with each passing day, what harm that does to the very existence of complex, higher reasoning… as I find myself unable to either listen or respond to the hue and cry of the wrong-doers and the wronged, as each side is so profoundly limited by the rightness — the righteousness — of their respective positions, which refuses to budge an inch, a centimeter, a millimeter, in response to perceived “challenges”…

Sigh.

The whole thing just makes me tired. It has the same effect on me as a gall bladder attack — it’s exhausting in ways that are hidden but very present, which come upon me suddenly in a rush of illness that tells me in general that I’ve not taken good enough care of myself, but offers no immediate relief, only the gradual, eventual re-gaining of healthy ground, so I can just go about my regular business without the constant nag of pain and self-imposed suffering.

I do it to myself with my media exposure, as well as my lapses in diet… I do it to myself by getting sucked into outrage and disgust and frustration, like so much greasy food on a slipper plate. I invite this pain and suffering on myself. In the steady progression of my ill-considered, ill-managed choices, do it to myself.

So, today I’m undoing it.

Yeah, I’ve spent a bit of time on Twitter, poking around, here and there.

And while I got more than my daily dose of human folly, I also found a reference to Randolph Bourne, which has brought me plenty of joy, just in the last few hours. I’m going to marinate in that some more. Print out some pieces. And read the words of other writers who worked prior to our digital age. Simone Weil. The Stoics. Folks who actually put some extended thought into their work and based their words on consideration, rather than knee-jerk reaction.

Folks who invite me to do the same.

What do I care about today? Peace. Of mind. Of body. Of life. Just some peace. And the cultivation of conditions that foster it.

I may go out for a walk in a bit. Or I may work on my book. That remains to be seen. I need to do some work in my front yard… but it may rain, so maybe not.

Dunno. I’ll figure it out.

But whatever I do, I need to care about it.

Or I’m not going to bother.

By saying that “Girls mask autism better”…

By saying that "girls mask autism better," you are effectively passing the blame on to them for not being able to diagnose them. Stop it.
By saying that “girls mask autism better,” you are effectively passing the blame on to them for not being able to diagnose them. Stop it.

Is #autism a purely cultural construct?

A few months back, I watched this video, and I found it very thought-provoking.

Essentially, what I hear Dr. Grinker saying, is that the concept of “autism” is a cultural creation, laden with all the criteria and aspects which the dominant culture deems important.

As someone with a cultural anthropology background, this idea intrigues me. I was a German-Anthropology double-major at uni, studying for 2 years in the US and 2 years in Germany at the University of Tuebingen (which — I discovered years after I left –has a pretty solid reputation in terms of anthropology). So, cultural context and the ways that the dominant mindset interplays with and fosters phenomena in people’s minds and lives is always in the back of my mind.

Heck, I’m an autistic woman, so of course I’m going to be intrigued by this stuff. If you want to get stereotypical, autistic boys are “little professors” and autistic girls are “little psychologists”. Of course, there’s bound to be overlap — you can cross that gender divide any ol’ way you like, and it’s perfectly fine by me.

Anyway, the more I think about this concept that “autism is a cultural construct”, the less I agree with it. I’ve long been convinced that we autistic folks have our own culture, our own ways of being, and the things we find compelling and meaningful are likely to appeal to us because we are autistic. We aren’t autistic due to the neurotypical identification of our “condition”, any more than species in the Galapagos Islands were invented by Darwin when he first documented their existence.

Let’s not get confused about this, people. Just because you identify and name something, doesn’t mean you have rights to it, or you own it, or you get to define it. All you’ve done is identified it, placed a label on it, and granted it (dubious and frankly unneeded) permission to occupy your thoughts in a systematic way.

Autism isn’t something that was invented by Asperger or Kanner, or even the other guy (Eugen Bleuler) who apparently coined the term “autistic” in … what?… 1911. No, Kanner wasn’t even the inventor of the term, nor was he the discoverer of autism. He was some dude who had a knack for recognizing the value in obscure but useful concepts, and turned that raw material into his own gold. ’nuff said ’bout that guy.

Autism wasn’t invented by anyone. Nor is it the domain of anyone who thinks they can (or should) cure it or fix it or do whatever with it. Autism has always been. It just hasn’t always been recognized. Just ’cause a bunch of people have been staring at their shoes for aeons, then suddenly they look up and notice the beautiful sunset, doesn’t mean they get to decide what the sunset means, what to do about it, or who has access to it.

Likewise, the idea of anyone declaring autism a cultural construct is telling. It’s telling that it comes from a straight, white, neurotypical male in academia. How presumptuous. And how clueless. He may have an autistic daughter, and he may have written some book(s) about the subject and studied autism in different contexts, but seriously… calling a distinct neurotype a veritable invention of the dominant milieu… yah. No.

I am especially convinced of this, as I did a couple of family visits with my autistic parents in a very autistic part of the United States, where they’re just starting to understand autism as something other than an extreme, mentally debilitating condition. My father is ill with a still-to-be-diagnosed condition, and both of my parents (being under duress) have become increasingly autistic along the way. But to them — and their friends — they are wholly and entirely normal. They behave “the way people are supposed to behave” and that’s that, as far as they’re concerned.

I spent a fair amount of time, on one of my visits, discussing an article about autism which my parents read and discussed with their (ultra spectrum-y) book group. In no conversation, other than one about my aunt, did the idea of anyone in our family being autistic come up. I haven’t discussed it with them. They hew to the classic, post-WWII understanding of autism. Frankly, they’ve got enough on their minds that needs processing.

Knowing what I know, seeing what I’ve seen, I firmly believe that autism is a specific neurotype. It is, in itself, not necessarily disabling. Now, what the dominant paradigm considers “autism” is actually the symptoms of the condition, exacerbated by a number of factors (genetic, environmental, social, cultural, interpersonal, etc). I also believe, having grown up in an area where autistic behavior and traits were/are the norm, rather than the pathologized exception, that even in the face of acceptance, the autistic neurotype still retains its distinguishing characteristics. It still lays the foundation for the classic issues that arise (and are pointed out in the DSM-V). However, in an environment where autism is the norm, there are specific cultural supports and accommodations which are naturally extended to individuals. Those supports are every bit as remedial as are found outside the community, but they’re not extended as part of a specialized response to a pathological disorder, rather just something you do for someone to help them out.

In the area where I grew up, in my extended family, as well as our immediate rural community, autism is simply another way of being. And there are specific supports and responses to its challenges, which are woven into the fabric of the subculture as part-and-parcel of that way of life. It’s not pathological, it’s not embarrassing. It’s just how people are with each other and the world around them.

But if you view it from a distance, the characteristics are every bit as autistic as any you’d find identified outside the normalizing context.

Based on my upbringing and the last 20 years of actively exploring the nature of autism in my own life, I believe that autism is actually very much “a thing” in itself. When it’s accepted as simply another way of being, autism retains its nature and characteristics (and challenges) — but the community incorporating it is transformed.

So, it’s not a question of a culture inventing autism. Rather it’s a culture learning to recognize a part of itself that it may have never noticed before… putting a name to it, trying to understand it, and figuring out how to incorporate it (or, sadly, in some cases, eradicate it). It’s a question of culture creating a disorder — which should never be confused with the autism, itself.

Is autism a cultural construct?

Nah. But autism does a great job of constructing culture.

Sharing: Mothers with autism: ‘I mothered my children in a very different way’ | Life and style | The Guardian



Being a girl or woman with autism is hard: it’s only in the past two to three years that many professionals have begun to recognise that the condition is not limited to boys and men. But what’s harder is to be a mother with autism – and harder than that, is to be a mother with autism, of children with autism.

Experts say that there is a hidden pool of mothers who have grown up with undiagnosed autism. These women often only recognise their own condition when researching their children’s symptoms.

Read the rest at: Mothers with autism: ‘I mothered my children in a very different way’ | Life and style | The Guardian

#Autism always existed. It’s the world that’s changed.

construction workers hanging on rebar
I’d rather be doing this, than sitting at a desk all day. Alas, such is not my lot at this time.

Once upon a time, the world I inhabited was regulated. Regimented. You got up at a certain time, you had your shower and your breakfast, and you went to work. Everybody did, in fact. And you went to work at a manual job — factory work, making things, repairs, farming. Or you had a service job — nursing, teaching, ministering, feeding people at the local restaurant. There were other “professional” jobs, of course, but those were few and far between, and you didn’t actually have to do accounting or web development or data science or some other sort of advanced science to A) make a living, or B) hold your head up in the world.

You worked your regular job according to pre-ordained principles. If you had a manual job, you could see how well you were doing, each day — how much you produced, how well your product turned out, how much hay you baled or how many gallons of milk you poured into the bulk thank. And when you were done with everything that needed to be done, each and every day — the machines were shut down, the tools were put up, the bulk tank was cleaned out, the lights were turned off and the door locked behind you — you went home to your supper, your evening routine, and sleep.

Then you got up and did it all over again.

Part of me longs for those days. Especially for the jobs that involve a lot of heavy manual labor, as well as clear parameters of what needs to be done, and what constitutes success. For this Aspie, those are the magic ingredients for a happy life — hard, hard work that makes you sweat, routine that doesn’t change, measurable results, and the knowledge that you’ve done something tangible to make the world a better place, one person at a time.

Now, things are very different, and I’m left to my own devices, to provide the kinds of supports and structure that really works for me. It takes work. It takes a different orientation. And my own needs don’t always make sense to others. They don’t translate well to neurotypical folks, who seem to think that structure and hard work are optional… or should even be avoided. It’s hard to function seamlessly in this world, to have the kind of flow I need to have in my days. Stuff is always coming up to throw off my cadence, my routine. My workdays are punctuated with non-stop interruptions and changing priorities, to the point where it’s pointless for me to plan on anything, depend on anything, or even expect to get into a flow state while I’m at work.

I’m not the only autistic one who feels this way, I’m sure. And I wonder if maybe part of the reason we’ve seen such a “rise” in autism, is due to the changes in society and culture, which have erased the once-hard-and-fast features of everyday life that used to stabilize and orient folks on the spectrum.

Thing Then Now
 Exercise Part of everyday life, part of doing your job You have to make your own, on your own time. No exercise built into our everyday lives – in fact, quite the opposite.
 Routine  Part of everyday life, part of living your life. Everybody did it, and that was that.  Everybody just do whatever they danged well please! It’s all personalized and customized and spontaneous. Woo hoo!
 Tangible results  Hay bales, head of cattle, pieces produced on the line, a repaired car that starts up, etc.  It’s all intangible, now. Hard to know, from one day to the next, if what you’re doing even matters to anyone.
 Roles and Responsibilities  Hard and fast. Everybody expected to adhere. Not always a great thing, but still existed. You knew where you stood.  Who can tell? I mean, it’s great to have self-expression and not be driven to suicide over not fitting the mold – that’s a big improvement. But it’s still more disorientating than it used to be.

See what I mean?

I’m not saying I want to go back to the days when “men were men, and women were women”, or when racism was the order of the day, pretty much universally. But I am saying that this modern-ish world is fairly well devoid of the things that really stabilized me as a kid and helped me manage my autistic issues.

And I wonder if autistic folks growing up after 1980 actually struggle with their autism more, because they never had those kinds of structures and elements in place. I wonder if this doesn’t make autism all the more obvious, because society has stripped away the very things that used to help us find and preserve our place in a regularly functioning world?

Of course, things are always changing, and so many of the changes that have taken place are actually really, really good.  Perhaps the answer is not so much going back to how things were, but rather understanding the benefits and purposes those elements served, and making sure that modern-day autistic folks (especially kids growing up) have those kinds of supports in place.

  • Exercise
  • Routine
  • Tangible results
  • Roles and responsibilities

I know it’s not fashionable to enforce those things on growing kids, these days. It’s not common practice, anymore, to enforce much of anything on kids growing up — and that’s a shame. Because a lot of us autistic people really need them.

We need them a lot.

Up early, and making the best of it

superhero with cape flying in fireworksI’m up early today. I got to bed at a decent hour, last night, but the pain caught up with me. I shoveled and snow-blowed (or is it snow-blew?) and raked my roof for three hours on Saturday, trying to get the packed slush and heavy snow out of the way, so cars can get up and down the driveway, and my roof doesn’t leak in the places it developed “issues”, a few years back when we got hit with a blizzard, and I had massive ice dams along much of the edge of my roof.

For the ice-dam-uninitiated, don’t ask. You can Google it. Even thinking about them makes me twitch. Trigger alert: Ice dams 😉

Anyway, it’s no good, leaving 4 inches of packed slush, topped with three inches of heavy wet snow blocking the driveway. What if I need oil for my furnace? What if there’s an emergency? What if there’s a fire? I have to clear a path for vehicles to reach me, just in case.  So, I fired up the snowblower and set about at least trying to move the stuff towards the woodlot beside my driveway. Not an easy task at all. There was such a layer of slush, I couldn’t get good traction with the snowblower, and it kept skidding and getting stuck, which meant I needed to heave at the heavy *&$^#%, using every last muscle in my relatively in-shape frame.

Couldn’t get it all up, though, even after nearly 2 hours of wrangling with it, so I had to push a lot of slush with my shovel. Again — it took work. I can’t believe how much work. Js F*****g Cht, it was a … challenge. And then clear enough of the stairs and the back deck to get in the house. And then rake the roof, so the slush didn’t turn to ice, lift up the shingles, and seep through in that hair-raising drip pattern that starts in the eves and manages to trickle down the line of the rafter, to finally drip from a spot roughly 6 feet away from the wall. If you’re not traumatized by the memory of it, the physics of ice dams are fascinating. And the physics indicate that my roof definitely needs to get raked as soon as humanly possible — especially during the day, so the melt doesn’t have a chance to freeze under the shingles when it gets cold at night.

That’s no good.

Anyway, on Saturday I spent about three hours moving heavy, wet snow, and while I didn’t wreck my back, it would seem that I exerted every single muscle in my body. Every single joint. Every single sinew and tendon and bit of connective tissue. The result? Pain. Universal, inescapable, aching, burning pain — the kind that isn’t solved by Advil and a hot shower or even a long nap. Only time and healing rest will fix this, meaning I need to eat properly (and a little more than usual) for the rest of this week, so my body can rebuild. That’s the one part of this I like — eating more food, which I can’t often do, because it makes me feel sluggish and not-great.

Anyway, the pain woke me up at 4 a.m. I lay there for a while, trying to get comfortable, then decided to just forget it and make the best of it. I can use the extra time, to be honest. I feel like my days have gotten away from me, so to speak, with the business travel from a couple weeks ago wreaking havoc with my schedule and my ability to function at the level I want. I’m not that comfortable with mediocrity, so when I’m on reduced resources and barely scraping by, I’m not a happy camper. At all.

So, I got up, I rode my exercise bike and lifted my weights. I listened to music and made my breakfast. Today I get to sit down to read and write, which I never feel like I have enough time to do. That’s an illusion, of course. I have the same 24 hours that others have, and others do far more (and far less) with their time than I — it’s a management issue, really. Still, it’s nice to have a block of 3 hours to just do as I like, without watching the clock, without feeling pressured to Do Something Else Right Now (as I often do).

I’m in a lot of pain, but it’s not difficult to get my mind off it and laser in on other things that are far more interesting and edifying than physical discomfort. I have a couple of books I need to finish. I have some blog posts I need to write. And with the extra time (even if I am dragging, later today), I can do it all at my own pace.

Which is nice.

I don’t care to make a habit of this, but if I have to be up so early, I might as well use the opportunity for what it’s good for.

Happy Monday, everybody.

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.

Philosophical Reboot – Getting back to my #autistic #stoic life

two stacks of rocks beside a rushing stream
This would be the ideal – to keep steady in the midst of the rushing streams of life

So, this is interesting. I’ve been an on-again / off-again stoic, since I was a little kid, trying to find ways to manage my sensory / anxiety / info overwhelm issues and still stay functional in the world. I was raised in a very religious (and Aspie-fied) household, and self-control always figured prominently in our family ethos.

Hold your sh*t. Keep it together. Self-possession and grace under pressure were held in the highest esteem. And of course, since I wanted to be held in high esteem, I did my best to keep it together.

I learned, early on, to not be too demonstrative about my emotional upheavals. Nobody wanted to hear about them, anyway, so what was the point of expressing them? Plus, if I “got out of hand”, I was literally pulled back into line, and the touch on my arms, hands, back, shoulders… it was excruciating. So, I learned pretty early on to not let my inner drama “soak through” to my external expression.

All this sound violent and coercive to me now, and I suppose it was, to some extent. It was no different than how my own parents were raised, though. It was “how things were done”, and when you disregard the discomfort and anguish, I suppose it actually helped me in significant ways.

I know it’s common to find fault with tough circumstances while growing up as a sign of abuse that should be eradicated, but whether my parents were managing me, or the neurotypical world was imposing on me, it was still formative in ways that have stood me in good stead as an adult. I learned from a young age, how to mask. I learned how to blend and camouflage my issues. And while that’s been a source of some pretty intense suffering, it’s nevertheless enabled me to develop a pretty impressive stoic ability to carry on, despite all the worst external conditions.

Stoicism suits me. It truly does. It’s not a practice of cramming down all your emotions, shoving them out of sight and never dealing with any of them. Au contraire. It’s the practice of living your life regardless of what happens to you. It’s a philosophy of personal autonomy in the face of uncontrollable adversity and conditions you’d never willingly choose for yourself. Rather than disconnecting you from your feelings, it connects you with them on a deep, autonomous level, where you choose what you will feel, and how you will experience your life, rather than having it dictated to you by outside conditions.

I know crappy stuff is going to happen to me. It always does. Life itself can be a losing proposition with me. Everyday I get up, I have no idea — and I mean no idea — how I’m going to do that day. I have no idea how much pain I’ll have, I have no idea how much adversity I’ll encounter. I have no control over others’ behaviors. I have no idea if my partner is going to be in a sweet mood, or foul — and likewise, all the people I work with. I don’t even know, from one day to the next, if I’ll have a job. Or if something awful will happen that takes me totally by surprise.

I can’t let that stop me from living my life. I also can’t let it stop me from being happy. I have so much I want to do with my life, so many goals and hopes and intentions — not so much for myself, rather making good use of the skills and abilities I’ve been given and developed. I’ve got a lot to do. I’m on a mission. And I can’t allow the shenanigans of the world to distract me from my purpose and detract from my quality of life.

I say that now, of course. A week ago, I was in a very different place. I’d gotten sidetracked, overwhelmed, fried by external circumstances… caught up in a perpetual, ever loudening (is that word?) feedback loop of stressors and stress. I was making myself sick — literally. And as far as I was concerned, it was everybody else’s fault.

Poor me.

Oh, poor me.

For some reason — divine providence? — I got distracted back into stoicism. I have no idea what I was googling or surfing in search of, but I happened upon some stoicism-related material… read it… read some more… thought about it… realized, Hey, this is what I myself think and believe, and actually, it’s much truer to my own guiding philosophy than all this stinkin’ thinkin’ that’s dragging me down.

So, it’s time for a stoic “reboot”.

I’ve been scouting around online, and fortunately the stoics are both classic and haven’t been hugely popular (read, economically viable for the publishing industry), so there’s a ton of material online I can download for free. Lately, stoicism has enjoyed a resurgence, and more people are writing and talking about it, but I prefer to read the original texts (translated into English, of course, though I think German translations could shed additional light), and give it all thought, myself. I find a lot of interpreters of original texts have their own perspectives (even agendas) which cloud the meaning for me. Plus, I find them less rigorous than is comfortable for me.

So, I’ve downloaded some texts by Seneca and Epicetus. I may dip into others, while I’m at it, but these are the two I’m focusing on, right now. And I’m spending time with them, reading, digesting, reading… interpreting… and doing some blogging about what I get from it, especially as it relates to how I manage my autistic issues and Aspergers life.

The blog will be an intermittent activity, since I’ve already got a lot going on. But I have a feeling it could grow into something over time. Time… that’s the first topic I wrote about. Speaking of which, it’s time to get to work. I’m at home today, since we’re having a snow storm(!) all day, and there’s not much point in braving the commute to the office.

I’d planned to go in today, thinking I’d get in a nice swim, this afternoon. But — as with so many of my other plans — it’s not going to happen.

‘Cause the rest of life happened, instead.

So it goes. Just have to make the best of it… which is a whole lot easier to do, within the comfort and quiet of my own home.

LISTEN: Black, female and autistic — hiding in plain sight – Sharing from Salon.com

If advocates for the autistic community are going to effectively place our cause within the larger spectrum of social justice movements, it is imperative for us to realize that — as with every other form of social discrimination — there are intersections between our hardships and those experienced by those who encounter racial, sexual, and other forms of bigotry.

This is why I reached out to Morénike Giwa-Onaiwu of the Autism Women’s Network, who chairs the Autism & Race Committee. After previously interviewing Giwa-Onaiwu for an article on the intersection between autism and feminism, I was struck by her observation that “I believe that my experiences as an autistic person has definitely been affected by my gender and race. Many characteristics that I possess that are clearly autistic were instead attributed to my race or gender. As a result, not only was I deprived of supports that would have been helpful, I was misunderstood and also, at times, mistreated.”

Please read and listen to this awesome piece: LISTEN: Black, female and autistic — hiding in plain sight – Salon.com

The problem of screening out autism with other conditions

dice
Maybe you win, maybe you don’t

Here’s another little tidbit that corresponds with World Autism Awareness Week. It has to do with the woefully inadequate understandings the mainstream of autism, which are both caused by and correlate with missed and denied diagnoses.

The diagnostic criteria for Autism keep changing, over time. In fact, they can vary from country to country (USA uses DSM-V, but there are a number of other tools in use). And from clinician to clinician, depending on their familiarity and how current they are on the research, the likelihood / possibility of being diagnosed can vary in the extreme. You just never know, really, especially in the US, whether you’re going to be really seen and understood for the autistic person you are.

It can be a veritable crap-shoot, and if you end up talking with a clinician who’s more practiced in other areas (as I have been, a number of times), you can end up having your autistic issues conflated with other mental health issues. Borderline personality disorder. Bipolar. Depression. Panic-anxiety. PTSD. ADHD. Trauma residue. Oppositional defiance. You name it, it’s probably been diagnosed (and treated) before autism, any number of times.

Now, this is not to say that none of these ever occur with autism, or that they aren’t actually accurate diagnoses. Perhaps they are. But too often they can be used to screen out autism and discredit the patient / client’s point of view.

One of the elements of the DSM-V Autism diagnostic criteria is that

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

 

Although this directive is fairly constrained, still there’s the idea that “disturbances [are] better explained by [another] disability”. And the fact of the matter is, a whole lot of other conditions can — on the surface — present similar to autism… unless the clinician is very familiar with “spectrum-y” symptoms and can tease them out from the haze of conflicting messages and indicators.

Autism is easy to miss, if people don’t know what to look for. Mental health issues and organic/structural conditions such as brain injury (including concussion/ stroke/TIA) or a developmental disorder can “disqualify” someone from an autism diagnosis, offering a more obvious explanation for why someone is behaving the way they are.

Co-occurring conditions may be heightened and the symptoms made all the more intolerable, thanks to the “intense world” of autism, and unless the issues that come with our distinct autistic neurotype are recognized, understood, and addressed, our other conditions will necessarily be further complicated, made more intense, and confront clinicians with a puzzling array of symptoms that just don’t make any sense — or seem made-up (to get attention, obtain drugs, etc.)

Autism-related fatigue can exacerbate all sorts of attentional and post-concussion-related behavioral issues (a tired brain is a cranky brain), possibly resulting in increased medication to offset the symptoms, while the underlying causes continue un-addressed. Sensory issues can repeatedly traumatize a person, spiking their PTSD, and resulting in more (and more) talk therapy designed to uncover supposedly deeply buried memories or emotions that are causing the stress… which in the case of autistic folks can actually exacerbate their stress, no matter how hard they try to comply and “get it right”. On the surface, it may look pretty cut-and-dried to the clinician, but they’re missing a critical substrate that sets the stage for ongoing issues, which may appear intractable.

This can end up confounding treatment and sending an autistic person down an extended medical/clinical “boondoggle”, filled with confusion and ill-chosen pharmaceutical and psychotherapeutic tactics. Ultimately, the autistic patient can end up zombied-out by their meds, or the clinician may give up, considering them a borderline Munchausen case, just looking for attention.

Now, if we consider that autism is a distinct neurotype, rather than a disorder, we can literally get the best of both worlds (so to speak). By understanding the context of autism, the experiential / physiological substrate of our overall condition, we can all factor in co-occurring conditions and gain a deeper understanding of not only how autism affects us, but the other condition(s) we’re dealing with.

Take my migraines, for example. I had daily sickening headaches, some of which had me doubled over in pain, for years and years. And yet, I didn’t fully realize how much they were affecting me until a few years ago. My PCP/GP and other healthcare providers thought it very strange that I would go for years saying, “I never get headaches,” and then suddenly announce that I always had a headache, and I had for years. It was literally not the sort of thing I wanted to think about, so I didn’t. I figured it was just how I was, just how my life was supposed to be. Not until I started talking to other people about it, did I realize that other people didn’t actually have headaches that intense on a daily, moment-by-moment basis.

Now, if you know a thing or two about pain perception and how variable it can be with autism, that may not seem so strange to you. And if you’re familiar with how we can block everything out of our attention when we’re locked onto an attentional target, it makes a lot more sense that I’d be in that situation. Additionally, knowing how … haywire … our sensory detection systems can be, as well as how overwhelming and wide-ranging our sensations can be, it would make sense that the sickening pain of a constant migraine would just blend in with the never-ending stream of unpleasant experiences that make up the background noise of my life.

But if you don’t know about wonky pain-perception, the autistic ability to block out unwanted stimuli, and the cacophony of sensory input a lot of us live with, I’d probably look like an attention-seeking exaggerator who’s just shown up for the drugs.

Of course, when I documented my headaches and presented my providers with the evidence of day after day of ever-present, continually morphing pain, there wasn’t much they could argue with. They could, however, give me strange looks and jump to the conclusion that there was something seriously wrong with me, if I went for years with this level of pain without telling anyone about it. Maybe some long-buried trauma from a horrific childhood… maybe a form of multiple-personality disorder… a recurring dissociative fugue state… better addressed through counseling than medical treatment.

Ultimately, I did get help for my headaches, and it’s been about a year since I last had a constant migraine. Last weekend, I had one for a few days, but it went away, as they now tend to do. But I can’t help but wonder — if my doctors had realized I was autistic and my spectrum-y issues blocked my ability to detect and interpret pain, would they possibly have asked me different questions, and might they possibly have taken a more pro-active approach in helping me identify and treat the conditions that were making my life a lot more complicated than it needed to be?

Personally, I think a working knowledge of autism and its “confounding” factors should be taught to clinicians, and that would clear up a ton of confusion. Also, by taking an inclusive, co-occurring approach that factors in the “substrate” of autism in the overall picture, we can truly appreciate the complexity and richness of the autism neurotype, and even gain greater insight into the intricacies of our co-occurring conditions (even the organic ones). Autism exaggerates a whole lot of sh*t, and we could learn a lot about any number of conditions if we studied the interplay of autism with co-occurring conditions.

  • Migraines
  • Depression
  • EDS
  • Stroke/concussion/other kinds of brain injury
  • PTSD
  • A wide range of mental illnesses
  • Injury recovery
  • [ Insert condition here ]

Rather than using these other conditions to deliberately rule out autism (or simply obscure it), let’s consider that autism might sometimes actually co-occur naturally and form the context for the experience. Diagnosis of autism needn’t be a damning prognosis. It can be a starting point to better understand.

But of course, first you have to be aware that it even exists, in all the forms it does.

And that’s not happening. Yet.