Today’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.
It’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.
9. Sickness is a hindrance to the body, but not to your ability to choose, unless that is your choice. Lameness is a hindrance to the leg, but not to your ability to choose. Say this to yourself with regard to everything that happens, then you will see such obstacles as hindrances to something else, but not to yourself.
10. With every accident, ask yourself what abilities you have for making a proper use of it. If you see an attractive person, you will find that self-restraint is the ability you have against your desire. If you are in pain, you will find fortitude. If you hear unpleasant language, you will find patience. And thus habituated, the appearances of things will not hurry you away along with them.
Indeed. I tend to lose sight of the fact that all my sensitivities don’t prevent me from choosing what to do with my life, and finding ways to deal with them. The simple fact of my life, which is my guiding principle, is that if I can identify that something is a problem for me, and I know what alternative I want in its place, then it’s incumbent upon me to do something about it.
I’m pretty resourceful, when it comes down to it, so I can’t very well make excuses for my life going the way it has, when I’m actually capable of A) seeing when I’m going off the rails, and B) coming up with alternatives.
Now, certainly, it’s no fun to have to constantly navigate a world that’s designed for people completely unlike me. But one of the reasons I left my parents’ house and took off on my own, was precisely because I knew that out there in the world, I could fashion my own environment that suited me. I know what bothers me, I know what makes my life difficult. And with that knowledge, I can design a life that works for me.
Of course, not everything is going to be suited to my liking all the time. But so what? The times when things are extremely challenging, are the times when I build up strength. Provided I give myself time and space to recover and assimilate all the lessons, the challenges just make me stronger. More resourceful. More determined. Maybe it’s just my character. Or maybe it’s because of how I was raised. Whatever the reason, when I look back at the worst times I went through, those were the most valuable lessons.
In some cases, you get what you pay for. And I’ve paid dearly, I can tell you that.
It’s all been worth it. Some of my experiences have felt like they tore me to shreds, but you know what? I’m still here.
And I’m going to stick around. There is no way I’m going to succumb to the dire predictions that I’ll die 20 years earlier than my non-autistic peers. That’s just ridiculous. We get to choose what we do with ourselves, what choices we make, what direction we take. And if I choose to do things that I know are not good for me — like avoiding certain foods because of the textures, but not supplementing my diet in other ways, or like avoiding exercise because I don’t have the energy — I have only myself to thank for vitamin deficiencies or poor physical condition.
Some magical being in the ethers isn’t going to descend to earth and save me from myself. If there are things I have to do, because the laws of physics and human anatomy require them, then one way or another, I’ll do them. It’s my choice. And I have the capacity for reason, discernment, to find alternatives, if one way doesn’t work for me.
So, with that said, it’s time to get on with my day. I find out what the deal is with my job — new paths are being charted for us at work, and the direction we’re taking actually makes a whole lot of sense for me.
Maybe I don’t have to leave my job, after all… Even so, I have a video interview for another position on Monday. It’s all a dynamic process.
All kinds of feisty, racing around, slamming into each other… the cops are out en force, and I’ve seen plenty of people pulled over, sometimes with lots of extra emergency vehicles around them.
Traffic on the way home was crazy tonight, with people flying all up in each others’ tail-lights, beeping, roaring… you name it. And this is even more than usual.
Something must be up in the world.
But you know what? It’s been 2 days since I looked at the news, and I have no idea what bees might be in their bonnets. Nor do I care. I mean, I care, but not so much that I’m willing to sacrifice my own well-being for others.
And I realize, that’s what I’ve been doing, lo, these many years that I’ve been paying attention to what other people do in the public arena. What a poor use of time. It’s useful to keep in touch with who votes in my favor, and it’s a good idea to participate in positive change. But all this other… crap that’s all over the news… yeah, it just doesn’t make sense to follow any of it.
Especially when nothing really seems to change much, even after all the upheaval and drama. There are so many other more constructive uses for my time and energy, than “following” the antics of people who are all into the drama for drama’s sake.
Me? I want to actually accomplish something.
So, I do. I’ve been reading a lot, lately. Spending far less time online. Chillin’. And it’s good.
Have a lovely evening — or day, if you’re reading this in the morning.
This is going to sound strange, but it’s actually easier for me, when people aren’t nice to me.
When they don’t say and do nice things for me, befriending me, and so forth.
I find it confusing. And the reciprocity thing makes my head feel like it’s spinning.
And I’m going to get it wrong.
Either I’ll get too close, too fast, or I’ll keep my distance when I’m not supposed to.
They’ll expect me to hug them. And that’s no good. I’m a terrible hugger, objectively speaking. I don’t know how to get the right pressure, and I always seem to dig my chin into the other person’s shoulder, which is a weirdly intimate thing to do, when I think about it.
They will say things and expect me to respond in kind. But my brain doesn’t work at their same speed, so I’ll end up saying something stupid or coarse or reflexive that’s unconsciously meant to push them away.
It’s better, if people aren’t nice to me.
That’s not to say I don’t like people. I do! I really enjoy their company, and I like to spend time chatting about things that interest us. Even the dreaded small-talk is fun for me, at times. Banter. Witty banter. Laughs. Ha-ha-ha. 😀
But other than superficial fun times, I prefer that people are objective and a little cold towards me. Matter-of-fact. Because facts really matter a lot to me, and it’s more important for me to handle things in the correct manner, than it is for me to “exchange energies” with potentially needy others.
I don’t mind the chill. I prefer it, in fact.
Just don’t be rude.
Rudeness I cannot countenance. Standoffishness, yes. But rudeness, no.
It’s not everyday we #ActuallyAutistic folx get some good news, especially from within the realm of research. But it’s a new year, and it appears that — somewhere, somehow — people have been listening. And what’s more, they’re willing to act.
But lo and behold, this is exactly what’s happened. Just got the news yesterday from the journal Autism:
… autism research is a shared endeavour. 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 takes us, of course, to the symbol that used to occupy the cover of this journal – the puzzle piece. Others have written at length about the history of that symbol, how it was initially deployed by the UK’s National Autistic Society (NAS) in 1963, and how it has become increasingly controversial as the years have progressed (Grinker and Mandell, 2015; see also Gernsbacher et al., 2017). But what has become much clearer recently is that autistic selfadvocates and many who support them have not only felt that the puzzle piece does not capture their view of autism itself, but that the failure of organisations such as this journal to act in response constitutes a core disrespect, as if their voices and opinions did not matter equally to other people’s (Brook, 2016).
Oh, my… I’m feeling a little choked up, actually. The fact that people in positions of influence have actually been listening… and have taken substantive, public action… that’s huge.
What’s more, the new design makes total sense. They say they developed the design with input from Autistic people, which in itself is amazing. And the red circles — overlapping, yet separate, similar yet slightly different… that pretty much says it all to me.
Plus, no blue. #Redinstead. Always a nice change.
So, I’m feeling like I can breathe a little easier. Not until I saw the new design, did I realize just how I hold my breath and brace for a conceptual … infringement… whenever I encounter official outlets for Autism research and thinking. Even with publishers and organizations who are very much “on our side”, I brace myself, every time I read their tweets or publications. I’m always on the defensive with the official outlets, no matter how well-intentioned they are. Because they so often just don’t get it… and I have to go to considerable lengths to rectify everything in my mind and convince myself — yet again — that they are not the enemy, they just don’t get it 100%… yet… and they’re trying.
Of course, the bulk of the conceptual work is on my shoulders, because I’m in the minority and on the receiving end. I don’t have the time and leisure and money and stature to do much of anything about it. Me taking the giants of the Autism industry to task about their unwitting slights and oversights, is like piloting a jet-ski through an iceberg field, trying to avoid the chunks of floating ice out of the way so I don’t wreck on them… as well as trying to nudge them out of the way, so others less speedy and attentive than I don’t run into them and wreck themselves.
The peril of poor word choices and dismissive language, I feel, is so much more severe for Autistic individuals, because we can experience language so viscerally, so physically, so deeply. Handing over Autism vocabulary to non-autistics, is a little like handing a gangly teenager a razor-sharp katana. They just don’t have the coordination and maturity to handle it well. And somebody’s gonna get hurt. Of course, the person wielding the weapon(s) isn’t going to suffer. They won’t feel a thing, when they draw blood from others.
And that’s precisely the problem. Because, well… double-empathy. Yet again.
For a less gruesome comparison, how ’bout this — asking non-autistics to research and address Autism on their own, is like asking a color-blind person to pick out a coordinated outfit out of your wardrobe of colorful prints for your big job interview. Nothing against the color-blind person. They’re still valuable and valid as a human being. But you’re better off having someone who can detect a lot more colors in the spectrum, if you’re going to present your best for The Big Job.
Fortunately, it looks like things are shifting. Changing. With any luck, improving. Big thanks goes to the researchers who have been raising the alert about how … er, screwed up, er, incredibly deficient , er, lacking the old route has proven. And hey — how ’bout all these profoundly insightful Autistic adults who know firsthand what it’s like to actually BE Autistic… mightn’t they have something to contribute.
We might, indeed.
So, I’m supposed to be resting today. Reading. Taking a break. But hell, this is big news, and I’m not about to sit this one out, when there’s so much to be lauded about it.
I could go on for hours about how the circle motif makes SO . MUCH . MORE . SENSE. But I’ll leave that to another blog post, after I’ve regained my strength. I’m still struggling after last week. And on top of that, I had a big get-together with 16 very chatty friends (old and new) packed into a 10×10 foot space.
Can you say sensory overload? Uh… yup. I will definitely blog more about my experience of hearing seven simultaneous conversations at top volume for four hours… and my ensuing glee that I didn’t completely melt down in the mist of it.
Oh, but I digress. Let the record simply show that I approve of this new direction that the journal Autism is taking. And I suspect a lot of other Autistic people like me do, as well.
Oh, except for those who hate it. We’ll always have some of those 😉
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.
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.
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.
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.
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.