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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The Upsides of #Alexithymia

tree by lake with moon and stars overhead

Something occurred to me, the other day. Namely, that alexithymia has been a huge advantage for me.

Not because it’s confused me about my feelings, but because it’s forced me — literally forced me — to rely on logic to navigate through life.

Okay, so that might not sound like such a great thing, considering how illogical the rest of the world is about stuff. Not being “in touch with my feelings” — heck, not even realizing I’m having certain feelings — sets me apart and puts me in the minority. It makes it harder to figure out whether people are really my friends or not. It makes it harder to figure out if I want people to be my friends. And it makes it difficult to tell what other people think of me, as well as figure out what I actually think of myself.

But that difficulty has been so pronounced, it’s required me to use my powers of observation and deduction to make sense of situations. To notice small details that others don’t see, to parse bits of info that most people overlook. To really invest a lot of myself in figuring out how things (and people) work, so I can be effective in interacting with them. I’m definitely one of the best “people persons” I know — people complement me all the time on my empathy and ability to interact with others. That, my friends, is because people have been one of my all-consuming interests, and I study them and their behaviors more closely than the most devoted American fantasy football player studies the weekly stats.

I’m good. I’m really that good. But it didn’t happen overnight. And it sure as heck didn’t happen by accident. I’ve worked at it. Nobody can take that from me. I’m the hardest-working person a lot of my friends. Well, yeah. Because I have to. Not much choice there.

I know it’s not a realistic option (because no choices are ever truly this binary), but if given the choice between built-in emotional “intelligence” about myself, or pure logic, I’d go with logic every time.

Given the right information about how my system works (including emotional things), with logic I can figure plenty of stuff out on my own. And logic serves me just as well as emotion. If I know — from observation — that such-and-such a sensation in my body means I’m nervous, I can take steps to offset the nervousness or channel the energy in a more productive direction. If I can deduce that such-and-such a feeling in my gut indicates a certain mental/emotional state, I can adapt and adjust and work with what’s there. If I know logically that being tired and hungry makes me feel terrible, emotionally, I can track my meals and sleeping pattern and recognize when my outbursts are related to exhaustion and/or low blood sugar.

Emotional self-knowledge only takes you so far, from what I can see. A whole lot of people around me who have no issues with alexithymia are (to put it coarsely) emotional wrecks. Their emotional states run their lives, and even though they’re “in touch with their feelings”, that doesn’t keep their feelings from taking over their lives. They’re even less happy than I am.

Of course, I’ve had to fail a lot of times before I figured out a lot of this. The rest of the world doesn’t instruct explicitly, but expects everybody to just know stuff. But all that failure has trained me to not take failing so damn’ personally, and to just get on with living my life, learning about it, and adjusting to the ongoing flow of information.

Information, it’s all information. And logic helps me parse through it deliberately, intentionally, self-sufficiently. Just how I like it 🙂

And I seriously doubt that I’d take the trouble to develop my logic, if I had insights into emotions and whatnot.

So, even with the difficulties, alexithymia has really come in handy. And to be honest, I wouldn’t trade it for the world. Some days, I’d like it to be a little less extreme. But I always have logic to fall back on.

And with that dangling participle, I’m off to live the rest of my life.


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

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

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

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

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

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

Yet.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Old School” Autism Adjustment

school building in snow on film strip

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

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

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

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

Please.

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

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

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

I’m alexithymic like that.

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

sunflower

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

So, that’s gotta change.

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

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

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

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

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

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

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

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

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


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We’re all autistic, we’re all family… what’s the problem?!

three figures with one close up

Ugh. My familial disillusionment strikes again. I had hoped so much to be able to connect with my parents, this holiday season. I won’t be traveling to them, so I’ve been hoping we could interact with each other in a mutually satisfying way. I’ve been cherishing the idea that the distance will relieve me of some of the existential angst that used to push me to suicidal ideation this time of year… every . single . year . until I was nearly 50.

Yeah, I know I’m being unrealistic. Everybody’s bothered by family stuff, almost without exception. I know very few people who don’t have issues with their parents, who don’t carry some sort of painful “baggage” about their relationship, who aren’t haunted by unaccountable ghosts that seem to embed themselves in our sinews and make themselves known like so much arthritis when the weather turns cold. And when you’re autistic, family stuff gets even more… interesting. I’m no exception.

So, I’m all spun up about sh*t. And what, pray tell, is it about?

This morning, my father finally responded about a piece of writing I’d sent to him a few weeks ago, to see what he thought of it. He’s seen my writing before, and he hasn’t always had favorable reactions. He’s misunderstood a lot of what I’ve written and said over the years, and he’s lectured me on all sorts of non-issues that he got all worked up about.

I chalk it up to his own Aspergers… that clinical tone he takes, the critical eye he turns to things… he seems to think he’s doing me a favor by telling me where I’ve gone wrong. He doesn’t actually discuss my overall ideas. He looks at specifics, homes in on the things that he thinks are flawed, and then he tells me in detail what those things are… usually from his own dogmatic point of view.

Yeah… thank you, Aspergers. That whole big-picture thing isn’t a strength of his. My mom isn’t much help, either. She also homes in on a narrow slice of something I’ve written, she takes it out of context, and then she gets upset. She’s much more emotional than he is, and she’s been so beaten down by the rampant sexism in her world, that she has a hard time articulating exactly what’s bothering her.

And then I have two of them all twisted up about my work, when all I really wanted to do was share it with them so we could discuss some of the ideas I’ve been thinking really hard about. It’s generally a really tough situation for everyone, and I hate it every time it happens.

Part of their issue is that I don’t have a college degree. Both of my parents have Masters degrees, and my father used to teach at the college level. I’ve got a number of PhD-level academics/researchers in my family — some of them considerably younger than I — and the whole formal education thing is very big in my family. I still get little insinuating lectures from my parents about how inexplicable it is, that I never got my degree. I attended university for four years. I accumulated the debt. I did my time. But no degree. That just rankles them to no end… probably in no small part because of their Aspergers.

What they can’t seem to get their heads around is that my “issues” were severe and cumulative in college… to the point where I had a serious drinking problem, I was in trouble with the law, I’d “acquired” a stalker, and I literally couldn’t complete my coursework in a timely manner, so completing the whole gauntlet just wasn’t possible. They’ve always felt it was my fault. I just didn’t do a good job of… anything. I’ve embarrassed them. And what right do I have to write anything that sounds like I know what I’m talking about, when I’m clearly such a loser?

So, when I’m presumptuous enough as to write something for others’ consumption (they don’t know about this blog), they get all up in arms. Because they think the things I write about require years and years of study at accredited universities, to qualify to speak about them. If I haven’t done the coursework, I can’t use my voice. I’m not qualified. I’m not vetted. I’m just some upstart making noise. And I’m making noise in ways that might embarrass them, if other people find out. I’m making noise that embarrasses them simply by right of me making that noise. It has no order for them. It has no sense. Because I haven’t ticked all the boxes that tell the world I’m allowed to say the things I say.

And for this very reason, I am incredibly grateful that I’m not traveling to see them for Christmas. We were going to try to travel down, but… nah. It’s winter. Officially. There’s snow on the ground and too much traffic on the roads. Better to stick close to home, and just settle in with my books.

My comfort.

 

On my terms.

In my own way.

That’s not “wrong” at all.

Not by a long shot.

#WomenInSTEM – #POC in High Tech – July, 2018 is the time to find a new job in Massachusetts

red glass and metal skyscraperIf you’re like me (not a white, heterosexual male, but still working in high tech in Massachusetts), you’ve probably been on the receiving end of a subtle form of discrimination that’s systemically ensured that a lot of us can’t get paid the same as white men with the same amount of experience and qualifications.

That discrimination is the standard-issue question, “So, what are you earning in your current position?”

It might not seem so horrible, but if you consider that a lot of minority folks start out at lower rates of earning, then over all the years of moving on, if we’ve been compensated at roughly the same rate we were before, we’ll inevitably end up making less than our majority counterparts — some of us significantly less. I know that Salary.com shows I’m making 15-20% less than my market value, and that burns. But up till now, I haven’t been able to do anything about it, because employers have always copped out by using my prior earnings as a reference point.

But that’s about to change — well, in another 7 months.

AN ACT TO ESTABLISH PAY EQUITY goes into effect in the Commonwealth of Massachusetts on July 1, 2018.

This law is supposed to even the playing field, in terms of compensation. The part(s) of it I like the most are:

   (c)  It shall be an unlawful practice for an employer to:
     (1)  require, as a condition of employment, that an employee refrain from inquiring about, discussing or disclosing information about either the employee’s own wages, or about any other employee’s wages.  Nothing in this subsection shall obligate an employer to disclose an employee’s wages to another employee or a third party;
     (2)   seek the wage or salary history of a prospective employee from the prospective employee or a current or former employer or to require that a prospective employee’s prior wage or salary history meet certain criteria; provided, however, that:  (i) if a prospective employee has voluntarily disclosed such information, a prospective employer may confirm prior wages or salary or permit a prospective employee to confirm prior wages or salary; and (ii) a prospective employer may seek or confirm a prospective employee’s wage or salary history after an offer of employment with compensation has been negotiated and made to the prospective employee;

That means, I can ask what potential employers are paying others who do my same job. And they aren’t allowed to ask me what I was making before.

So, that means I’ll be free to change jobs next year, without worrying that I’ll be blocked in by my past. It’s been a rigged game against me and others like me for far too long, and now that’s changing.

Who knows how much it will fix, but in any case, at least that’s one less thing I need to contend with. Being a 50-something high tech veteran is challenging enough in this youth-loving world. I can use all the help I can get. Plus, it will be nice to get paid the market rate.

For once.

What a delightful week it’s been! Blissfully quiet

And I’m pretty wiped out. I’ve had most of the past week to just do the things I like to do, in the way I like to do them. Which means, a lot of sitting. And a lot of isolating. And a lot of reading and writing and researching and pulling out textbooks, thumbing through them and crying, “Ah-ha!” when I find the passage(s) I’m looking for.

I’ve been immersed in a certain mode of thought I don’t have the luxury for, in my regular everyday working life — where my co-workers are suburban parents who just want to make enough money to put their kids through school and/or climb high enough on the corporate ladder where they can vex more people than those who vex them.

It’s been so much fun, being away from that whole scene, that major drain of a scene. And while I do look forward to getting back to my routine, I don’t look forward to dealing with those people again. It’s been a real pleasure, not having to constantly come to terms with the mixture of sadness, pity, compassion, frustration, and intermittent admiration, that I cycle through each day.

But I have to say, I am pretty tired.

It takes a lot out of me, trying to catch up with myself and the kind of life I want to lead, when I have such limited opportunity. It kind of works against me. Except, it’s my choice, and I can do what I please. And in the end, I’ve got a lot of satisfaction out of the whole deal.

Tomorrow I head back into the jungle.

Wish me luck.

When non-verbal == strength, it’s time to be non-verbal

red and blue dots connected by meandering lines on a field of red and blue static
My process looks confusing to others, but I get where I’m going – in my own way

So, my Major Deadline has passed. It went off pretty much without a hitch.

Just in time for Thanksgiving. I’ve got some time off, next week, but I’ll probably check in on my project to see how it’s going, now that it’s “live”.

It’s been pretty brutal, overall. Really, really taxing. And it’s taken just about a year to get this “15-week” (Hahahahahaha!) project ready for prime-time.

Now it’s out there, and it’s time to step back, think through all the lessons of the past year, and figure out the next steps. Because this sh*t isn’t going to stop. I’ve got another phase of this project just around the corner in less than 2 months’ time. So, get a little rest, and get back into it.

One of the BIG lessons of this has been seeing just how non-verbal I am, when I am in problem-solving mode. Make no mistake, I’ve been mostly in problem-solving mode for the past year. So, I’ve been mostly visual-spatial. Which means I haven’t been thinking well in words — or the times when I’ve had to think in words (and talk), I’ve been at a disadvantage. And the talking has cut into my non-verbal problem-solving.

I’ve known I’m a visual / non-verbal thinker (this blog nothwithstanding) for many years. And I’ve known for just as long that having to switch my mode between words and pictures is a problem and makes both sides more difficult. But not until this past year (or two) have I really seen so clearly just how much of a problem this can be.

In my job, I have to communicate to people.

But communicating just doesn’t happen, when I’m in non-verbal mode. So, I don’t do my full job. And it works against me and the people I work with.

Huh. If I had more energy, I’d dig into this more, but the bottom line is, I need to figure out how to meet the requirements of verbalizing, even while I’m in heavy-duty non-verbal mode. Because the job requires it. And it’s not that I don’t like to do it, or that I can’t do it. It’s just that I need to find a better balance between doing it… and not.

Well, that’s a line of thought for another day. After I’ve caught up with myself and have the time and space to really think it through.

I’ve had a lot of important (for me) insights, over the past weeks, just haven’t had time to note them all down and expand on them. I’ll get to it. Just not yet.

Watch this space, though.

Watch this space.

#Autistic joy – it’s a thing. And we should have more of it.

agora theatre wall
Agora Theatre Wall – isn’t it lovely?

This morning, during my morning exercise bike ride, I read a piece by John Elder Robison about My Life With Asperger’s

Sex, Lies, and Autism Research – getting value for our money

How to get tangible benefit from the millions we spend on autism science

The US government is the world’s biggest funder of autism research.  For the past decade I have had the honor of advising various agencies and committees on how that money should be spent.  Sometimes I’ve been pleased at our government’s choices.  Other times I’ve been disappointed.  Every now and then I turn to reflect:  What have we gotten for our investment?

Autistic people and parents agree on this:  The hundreds of millions we’ve spent on autism research every year has provided precious little benefit to families and individuals living with autism today.  Over the past decade the expenditures have run into the billions, yet our quality of life has hardly changed at all.

You can read the full piece here. It’s worth it.

And of course it got me thinking… along similar lines to yesterday’s post, wherein I pondered the irregularity of autistic joy.

Returns on investment. Getting our money’s worth. Having something to show for our investments… What a world it would be, if all the money spent were going to opening up chances for good to flourish, rather than some “war on autism” dedicated to <begin sarcasm> hunting down and eradicating the dread disorder that “steals” perfectly healthy and happy children from their families and tearing apart everything their parents hope for and hold dear </end sarcasm>.

Now that we’re all triggered, let’s take a deep breath and step back from that hijacking of the collective consciousness by ve$ted intere$t$ and pause to actually recognize and laud the truth of Autistic joy.

If there’s one thing that seems to set Autistic people apart from non-autistics, it seems to be the capacity for joy. Honestly, looking at the neurotypical world, all I see is pain. Frustration. Anguish. Predators and prey. And the best that most non-autistics I know can hope for is just a temporary relief from their pain. Drinking. Drugs. Facebook. Yes, they have their friends and family, their careers and reputations. But even those joys seem so fraught with danger and conflict, there doesn’t seem to be much purity there at all. And the times that my non-autistic friends and associates are happiest, are when they’re numbing their pain with a stiff drink or distracting themselves from their pain and fear with some form of entertainment.

Truly, it’s such a dreary world they inhabit. Where’s the joy? Where’s the ecstasy? They don’t seem to have much capacity for it, and they treat my (and other Autistics’) capacity for unbridled joy like it’s a disorder. A condition that needs to be fixed.

How does that work, exactly? I just don’t get it. I would imagine it’s a little like being a really tall person during the 1700s, when people were considerably smaller than they are today.

The thing is, I don’t think non-autistic people are completely devoid of the ability to feel and experience ecstatic joy. I think they have as much capacity as we Autistics. They’re just not allowed to experience it by their milieu. They’re smacked down. Held back. Shamed and blamed and pressured into being certain ways because that’s “normal”. Huh. How ’bout that.

Meanwhile, it just holds them back. It cripples them, not only in their own lives, but also in how they relate to us.

It’s a little like the inexplicable conditioning of women to not really move that much in their lives. I’m noticing this more and more, these days, as I continue to move and be fairly limber and spry and strong, compared to my female peers. I take stairs two at a time. I lift 40-pound water bottles on a semi-regular basis. I rake my own lawn. I shovel refuse into my wheelbarrow and push it to the dump pile down the road. Even though I have issues with chronic pain and scoliosis, I get up and move around with pretty decent mobility.

Meanwhile, my female peers — friends and family — move a lot more slowly than I. Their joints are giving out on them, and they just don’t move as well or as freely as I do. In some cases, I realize it’s because they’ve been focused on being “good girls” for their entire lives, and good girls don’t jump up and run across the room. Good girls don’t take stairs two at a time. Good girls don’t stretch their backs and necks to get them to crack. They might go to yoga. Or take a pilates class. But they don’t really move freely in the course of their everyday lives.

And after decades of being demure, it’s taken a toll. They can’t just hop up and run across the room. They can’t dart out of danger, if something is flying towards them. And they run out of energy pretty quick, pumping themselves up with carbs and sugar and caffeine.

I’m not talking about disabled people who are dealing with physical limitations. I’m talking about healthy, non-disabled people who have actively limited themselves with their choices and behaviors. Because good girls don’t move quickly. Good girls aren’t physical. Good girls don’t take stairs two at a time. That’s not normal. And it’s certainly not free.

I have no idea why some people can’t deal with freedom. Or joy. Or ecstasy. But that’s not really my problem. My job is to make the most of my own freedom, my own joy, my own ecstasy. And to protect and shelter it in the face of all the people who covet it but refuse to allow themselves to experience it.

Autistic joy is a thing. Today, for me, it’s about getting back to my routine, which allows me to do so much more than I could if I had to re-design the schedule for my day, each morning.  I have a lot to get done, and my routine allows me to focus on the new and exciting things that interest me, even while I can consistently complete the basics that form the foundation of my life.

With my routine, I can get myself out of bed, wash my face, brush my teeth, and get myself downstairs with relative ease. With my routine, I can get my daily exercise, catch up on my online reading, have my breakfast, and get some writing done before I start my day-job work. With my routine — which other people might consider mind-numbingly consistent — my mind is freed up to do more interesting (and far more complex) things than figure out how to fix my breakfast. With my routine, I can get a whole lot of things done, that most people wouldn’t think are even remotely possible. And there’s a lot of joy to be had in the doing. Having four(+) projects going at the same time, and seeing them all coming to fruition in their own times and their own ways, is a rare treat that isn’t even on the radar of most people I know.

Autistic Routine — as much as it’s pathologized by the diagnostic establishment — is the very thing that makes it possible for me to function at higher-than-average levels.

And it’s something that brings me joy, which should be more than enough reason to depathologize it.

So, yeah. Rather than getting hung up on all the downsides of Autism (and don’t get me wrong — there are a lot of challenges that can make your life really miserable), maybe we need to focus more on the joy that seems to come part-and-parcel with  Autism.

Autistic Joy is a thing. Let’s have more of that!

Through the river locks of #autistic joy

Quebec river locks
I’m coming ’round to my desired routines again, getting back to some narrow interests that have drawn me in and held my keen interest for years at a time. I’m finding myself able to think again, after a months-long hiatus of all-consuming DO-DO-DO–GO-GO-GO. I’ve been so busy “upping my output” that I’d lost touch with the simple act of taking in.

I had all but forgotten about some of those vital interests — the books I’d bought to read (devour, really) and ingest and think on, long and deeply, got stashed in my office and I haven’t spent much time there at all for months… the papers I’d downloaded to take in and consider also ended up in piles in my office… the theories and philosophies that have lit up my life so brightly for so many years, faded into the background of my day-to-day rush to Get Things Done…

Yeah, I got busy. And necessarily so. All of it was important. All of it held my interest and taught me useful things.

But as with any all-consuming effort that flames up in a series of inner fireworks, there’s a price to be paid, and that price was the steady flame of joy from what’s held my interest in a steady, rapt embrace.

I think perhaps this is a distinctly autistic feature of mine. I tend to be so completely consumed by what I’m doing at the time, I lose sight of everything else. And then my best-laid plans to do such-and-such a thing in such-and-such a timeframe… well, that all flies out the window like a caged bird that’s realized the keeper left its door unhooked. At the same time, my “interim” interests (intellectual sprints in the midst of my conceptual marathon) tend not to last long. Maybe a few weeks, maybe a few months. And I can lose interest in them rapidly, so that the full roster of Productive Activities I’ve earmarked for doing… well, that just gets lost along the way, too.

So, I end up with a lot of things started, and not a lot finished in the intended timeframe. Ultimately, I do finish things. But it’s years after the original plan. One of my books took nearly 20 years to complete. While others took me maybe 6 months, tops. Other works have been under construction for a couple of years, and they still don’t feel like they’re ready to be done.

I guess I do need to let my imagination “off the lead” and let it run around wildly for a few weeks/months at a time. It re-invigorates me, when I’ve reached a point of overwhelmed ennui, and nothing I’ve been working on makes any logical sense anymore — not because it has no sense, but because I’ve pushed myself to the point of not being able to reason, to think, or to draw anything useful out of what I’m pondering.

It’s cyclical. It needs to be. And yes, it doesn’t conform to the usual timeframes of the neurotypical world. How do those people live that way, anyway? I don’t get it. It seems both forced and dessicated, as though there’s no room for anything human at all. Just a mechanization of our creative impulses.

I can say this (and complain bitterly about it), because I make my living as a Program Manager at one of the planet’s largest high-tech companies. I see (and have to live) this forced, artificial, mechanized way of doing things every moment of my professional life, and I don’t like it. I’d love to toss a wooden shoe in the whole works and grind the teeth off the gears. Stop the whole machine from working that way. But alas, ’tis not in the best interests of my ongoing employment to do that. I like to eat. I like having a roof over my head. I like being able to afford to live my life. So, I keep those gears turning.

It’s a master-class in Everything Not To Do, If You Want To Keep Your Spirit Alive.

Well, so it goes. Railing against the imperfections of the world is all very well and good, but it’s much more productive to counteract it.

And I guess that’s what I do, when I move at my own speed and meander through my personal projects. Like a boat moving between two bodies of water that are at different levels, I need to progress gradually through the “locks”, letting the waters flow in/out and lift (or lower) my proverbial vessel, as I move from one level to the next.

Maybe, just maybe, that gradual way is my own way reclaiming my own autistic identity and reinforcing my own “organic” process (much as I hate that expression). The daily grind really does show me how I do NOT want to conduct my own affairs. And while it does grind me down, and there’s a big part of me that wishes I could make a living doing what I love to do, rather than doing what others will pay me to do, because they’re under the impression that it “needs” to be done… I’m not holding my breath. I’m an inventor and a builder, not a marketer, and I’m not going to waste my time trying to force myself to work in a mode that doesn’t suit me.

So, the day job remains in place. Until I can make a living otherwise.

Well, the day awaits. I have a bunch of things I need to do, and I’ve got a social afternoon ahead of me. I’m looking forward to it. Hangin’ with another Autist. It’s always a pleasure and a relief.

Till Monday rolls around, and it’s back to the same old…

In the meantime, though, I’m good, just going along at my own pace, piecing things together as I go, and keeping my spirit alive and lively.

With joy.

All that joy.