I dunno – I just don’t think there’s enough positive stuff out there about #Autism

human silhouette on beach with sunsestNot to mention success stories.

Okay, okay, I get it. We need to build support for folks who really need it. But I think at times that our Autistically rigid thinking keeps us aligned with some pretty rigid support possibilities, many of which simply aren’t available to all of us.

The needs of an Autistic kid in a city may be very different from the needs of a middle-aged Autistic woman living in the suburbs, and they may be very different from the needs of a 30-something Autistic man living in a rural area. And then we have our aging population… men and women… who have been through so much, and now face the double-whammy of becoming elderly (a challenge in society, in general) and having those sensory/social challenges which may become even more pronounced in old age.

I’m worried. Anxious. For myself and all my Autistic tribe. And I’m not alone.

The thing is, I suspect that anxiety takes the edge off my creativity. It locks me into rigid thinking. And it erodes my ability to come up with some really inventive solutions.

Personally, I think we Autistic folks are some of the most inventive people on the planet. For sure. I mean, look around — so much of what we have is the product (I believe) of an Autistic person with an intense interest in One Single Subject. That focus has produced some truly amazing things. And that same focus can help us fix our future.

So, the future… yeah. What does that hinge on?

Well, the past, for one. And also… patterns! Patterns, yes. We plot our course forward by referencing patterns — this leads to that, this causes that, if you do this, you can logically expect that. And we gain a sense of where we are in the world by watching other people and seeing how their lives have shaken out over time.

We are constantly learning from other people, “ingesting” their experiences, learning from their mistakes, and taking cues from their stories. Humans are story-loving creatures, and each of us has thousands of stories of our own that we collect over the course of our lives. They can be based on our own experiences, or they can be from our observations of others. Or we can make them up as we go along. But we have them. We use them. We rely on them to no end.

Yes… stories.

Earlier this week, I was chatting with an older Autistic man who spent time with younger Autistic people. He said he was really alarmed at how traumatized those young people were, how harrassed they were, how on-guard and roughed-up by life they were. These were young people who all had the advantage of knowing they’re Autistic, but it was such a burden for them.

😦

Major 😦

I personally don’t think we do a good enough job as a community, sharing our strengths and accomplishments… our joys and ecstasy. Autism for me is every bit as much about bliss, as it is about struggle — equal parts, I’d say. But the discussion so often centers around the struggle, perhaps because I think I’m going to get commiseration and support from others who know how I feel. Unfortunately, that’s seldom the case. If anything, it works against me. And I end up getting sucked down into the Pit of Despair, as I perseverate on the idea that somehow, somewhere, sometime, I might get some help.

I won’t… 93.72% of the time. Now and then, I will, but I spend far too much time working towards that 6.28% that’s occasional and intermittent at best.

So, where does that leave me? Sorta kinda where a lot of queer folks were left, back in the 1990s, when so many of us were coming out, but most of the media about being queer (especially movies) were so full of angst and pain and suffering. Suicide, too. Ugh. How many gay and lesbian movies (long before the concept of being queer took hold) showed us being miserable and downtrodden and better off ending our lives? To be honest, it wasn’t altogether unlike what Autism$peak$ has done. And while I’m not 100% on board with comparing Autistic folks to queer folks, all across the board, there are some pretty pronounced similarities.

  • Being different embarrasses our families.
  • They try to make us different — more like them.
  • If we’re lucky, they fail. If they succeed, we’re twisted into a version of ourselves we don’t understand.
  • Ostracism, misunderstanding, violence. Etc.

Anyway, this is a really long-winded way of saying I think the Autistic community could learn a thing or two from the LGBTQ+ community (and yes, we do overlap), especially insofar as the Pride movement is concerned. Celebrating our differences, developing our own culture and community, taking our place in the world just as we are, and having a lot of fun while doing it… There’s real power in that, I believe. And it’s where I hope we go with our Autistic community building.

I’m not gonna tell anybody what to do or how to do it, but I can do something in my little corner of the world. I can talk about my life in positive terms. I can share my triumphs and joys. I can really celebrate the successes of other Autistic folks. I can focus on the good, the strength, the fortitude, the brilliance. None of this takes away from the challenges we have — it’s merely ballast for my proverbial vessel as I sail the high seas of life.

There are so many wonderful, positive things about Autism that get lost in the crisis, anxiety, difficulty, drama, and shame of growing up Autistic. They get lost to parents, they get lost to us. They get lost to society, in general, obscured behind the ignorance and judgment. We go into hiding. Because it’s safe there.

And then, when we grow up, we can be so alienated, so accustomed to hiding, that our actual development isn’t recognized. Or people are so used to looking at us as they remember us, once upon a time, that they don’t give us the chance to shine.

I think that needs to change.

I can’t speak for anyone else, but I plan to change it on my side… do my best to unleash a torrent of writing about how absolutely excellent it can be to be Autistic. It might piss a lot of people off, because it may undermine their message about how we need help and support. But I’m not going to lose the good parts of my life, while I wait around for the government or some organization to meet my needs.

Certainly, it would help… but I think we can do more than that.

Well, I can, anyway.

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In search of my flow state

stream flowing through forest with the flowing water in focusI’m in the process of resetting for the new year. Resetting my activities. Resetting my priorities. Resetting my activity levels. I typically do this earlier in the year, when I’m swept up in the New Year’s Resolution blitz.

But this year, I haven’t been feeling it. At all.

It’s not going nearly as well as I’d like. Work is weird. My life is weird. It’s all kind of… weird. I don’t feel like I’m fully inhabiting my own life, and I’ve been so busy with everything, lately, I haven’t had time to stim or reach a flow state for weeks… perhaps since the beginning of the year.

It’s maddening. Probably the worst thing about the way things have gone, for the past months, is the ever-increasing level of interruption in the course of each day. It’s absolutely maddening. As in, it makes me really, really mad. I have to be able to settle into extended periods of thought, in order to be effective, and my current job is preventing that on every level.

Distraction kills, and it’s doing a hack job on my performance at work, not to mention my job, overall.

Well, that’s the job, right? That’s “just how things are” in my current professional corner of the world, and anyone who can’t keep up is left in the dust. Personally, I’d be fine with being left behind. Just cut me a check and let me go. Let’s call it a day and say it was an interesting learning experience, shall we? And let’s all move on to other, better things.

But I don’t have a substantial back-up plan. I’ve been putting out feelers for work, but the kinds of work I’ve been applying for… well, it just hasn’t been a good fit. I got a job offer, a month ago, but I had to turn it down because the conditions were, well, crappy. A longer commute. Into the thick of the worst rush hour traffic in the area. Frenetic pace. Frenzied, from what I was told. In a building where they have chemicals that smell and bright lights that blind. An open work space plan. And not more money than I’m making now.

So… no. Not that.

I put in for some other jobs, and I heard back from what looked like a really good opportunity, but after I responded to them, they didn’t get back to me. I need to ping them again. There’s a good chance they took a look at my resume and realized — Hey, she doesn’t have a degree! — and, like many others, decided I “wasn’t a good fit”.

It’s a little depressing, actually.

But it’s got me thinking… About what is actually the best work for me to do. After being a web developer for 15 years, I gradually shifted into project and program management for the past 8 years or so, because it felt like the software engineering world was closing in on me and I was getting crowded out. I felt like I just couldn’t compete with all the lower cost talent with more updated skills… the people who “fit better” with organizations… or who had degrees. The project/program management space seems to be less amenable to people who literally teach themselves how to do things, than the development space. And while that didn’t hurt my prospects in the past handful of jobs I’ve had, it’s starting to feel like it’s closing in on me even more than development did.

bomb emoji with lit fuse looking down
This is about how my “career” is feeling, about now.

And indeed, the lack of flow is a huge issue. Somehow, I seem to have acquired work that I absolutely hate. Tracking other people’s activities. Communicating to everyone who needs to know about program and project status. Navigating political minefields. Battling for my territory. Making nice with people across the organization. Being interrupted every 20 minutes (or as soon as I get into a flow state). Conference calls. Lots of conference calls. With people who have thick accents and/or are on a poor phone connection. And more interruptions. Travel. Regular business travel, which doubles my workload and completely trashes my routine.

It just feels like a setup. I can do it for so long, then I am completely wiped out. Because nobody sees how much I struggle, and I can’t let on, because that would trash my career prospects like nothing else. And I can’t chance that.

The fact that I’m really good at it, is no consolation. At all.

I mean, seriously, I’m really good at it. I’m a fantastic meeting facilitator, I can communicate extremely well to people who need to know. I know how to work effectively with offshore folks (been doing it since 2002). And I can turn on a dime if the situation calls for it.

But man, oh, man, do I pay for it. In a very big way. Of course, nobody else sees how steep the price is, because they rely on me to keep doing what I’m doing, just the way they are accustomed to seeing me do it.

And seriously, this is no way to live.

I need my flow back. I need to settle into a chunk of code and just work my way through it. I need to cozy up with a tasty algorithm and just do my thang. Seriously, I do.

{pause to take a breath}

Okay, so where does that leave me? Or rather, where does that point me?

Realistically, away from where I am now. And back into the development world. In my former life (before I trained my replacements in 2002 and was then told to go find another job in 2005), I was one of the best of the best at my chosen line of work. Web development. Front-end web development. UI coding. Cross-browser. Cross-platform. Proficient in ‘nix flavors and the command line. Not afraid of anything code-related.

And it suited me. In a very big way. Because I could create things and make stuff work, like nobody else. I could convince browsers to do things they weren’t built to do. I was good. I was one of the best. And I was relieved of my duties by the bean-counters who had no idea what the work entailed. All they knew was that I was “too expensive” and they were convinced I could be replaced.

Hm.

Yeah, as it turns out (having managed a lot of projects involving developers who weren’t even close to as good as I was), I can’t be replaced. My skills are still needed. And my interview and subsequent job offer this past December (for a developer job) tells me that I still have a future in that realm. I tend to get pretty rigid about things and get convinced that since I’ve almost exclusively done project/program management for the past 3.5 years, so I’ve been telling myself that I have to stay in that space. But I don’t. I can shift back to development. I’m the only one who’s blocking myself, at this point.

Plus, I can do my own “thang” in the process. Build tools. For mobile. Just build things that show people what I do — like Temple Grandin recommends. I’ve actually got a pretty impressive portfolio, and it’s not even complete. I need to get focused on completing it, and lift myself up out of this increasingly wretched state I’ve been in, for the past year and a half, when it first started to dawn on me that this was probably not the best job choice for me.

There’s a lot I can do about my situation, right now. I can build my own apps. I can build my own websites. I can do a lot that shows how I work. And I can put the finishing touches on some projects I started over the past years but lost the energy to do them – because I was too wiped out from my day job to keep up with it all.

So, there is hope.

But for now, it’s time to go move some snow. We got a bunch of it overnight, and I need to shovel it before the temperatures start to rise. Heavy snow is no fun.

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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“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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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.

Of #autism and naming and claiming

Hanne Blank offers a helpful way into this discussion in her book Straight: The Surprisingly Short History of Heterosexuality with an analogy from natural history. In 2007, the International Institute for Species Exploration listed the fish Electrolux addisoni as one of the year’s “top 10 new species.” But of course, the species didn’t suddenly spring into existence 10 years ago – that’s just when it was discovered and scientifically named. As Blank concludes: “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned Electrolux from a thing that just was … into a thing that was known.”
Hanne Blank offers a helpful way into this discussion in her book Straight: The Surprisingly Short History of Heterosexuality with an analogy from natural history. In 2007, the International Institute for Species Exploration listed the fish Electrolux addisoni as one of the year’s “top 10 new species.” But of course, the species didn’t suddenly spring into existence 10 years ago – that’s just when it was discovered and scientifically named. As Blank concludes: “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned Electrolux from a thing that just was … into a thing that was known.”

I just found this, following my commentary from the other week about how naming a thing doesn’t mean you’ve invented it.

And we could say exactly the same thing about autism, with a few updates:

Autism is one of the year’s “top 10 new epidemics.” But of course, autism didn’t suddenly spring into existence 70 years ago – that’s just when it was discovered and scientifically named. . . . “Written documentation of a particular kind, by an authority figure of a particular kind, was what turned autism from a thing that just was … into a thing that was studied.”

Not to keep hammering on this pesky “nail”, but it matters.

It matters a lot.

Welcome to the intellectual sinkhole – arguing about the validity of #autism #diagnosis

sinkhole in pavement with cracked asphalt around it
Well, that was exciting. I guess. Over the past couple of days, yet another drama scene erupted on Twitter with people arguing about whether self-diagnosis is valid for autistics.

I mean, seriously, this is such a poor use of time.

Not because affirming the validity of others’ identity is pointless. Rather, because getting all spun up over it is. When we get all worked up with fight-flight responses, our ability to think clearly leaves the building. That’s how we’re built. It’s not even a thing you can dispute. It happens. Higher reasoning gets switched off by forces beyond our control — which kick in prior to conscious thought. By the time our systems have figured out that it’s happening, it’s already been done.

And we’ve probably said or done something we wouldn’t have done otherwise. If we’d had our wits about us and had taken a deep breath and gotten our sympathetic nervous systems calmed down, the tone policing wouldn’t have happened. The swears wouldn’t have unleashed. The accusations (some of them pretty accurate, but not the most kind) wouldn’t have flown.

And the argument might have remained a civil discussion.

Not yesterday, tho’. Nope. Not at all.

As a result, I muted a handful of people whom I’ve followed for quite some time. I didn’t block them, just muted them. Needed a break. Needed to not have to listen to them impose their versions of things on me, as though their version is the only thing that matters. I tried reasoning. And that got me nowhere.

Because they’d already been hijacked, I’m thinkin’. They weren’t even there anymore — just a bundle of reactions and an overwhelming need to own the Whole Truth About Autism.

Sigh.

Which brings me to thinking about community. People seem to think that community is a warm-fuzzy-accepting place, where you’re accepted for who you are. Especially autistic community. After all, we’ve wandered — some of us for years, even decades — in search of our kind, our tribe. And when we find others like us, it’s a huge relief. We feel like we’re home. The “honeymoon” commences.

Then the community shows up.

And it’s not pretty.

For the record, I was raised in community — not a commune or kibbutz, but a community of faith and subculture that was tight-knit and well-defined and highly cohesive over generations. To this day, I know that if I ever fall on hard times, I can always — always — look to that community for help and assistance. Because we’re connected in profound, enduring ways that have withstood the ravages of centuries of religious persecution and opposition from the rest of the “world”. Those connections involve a whole lot of extended blood ties, as well as regular participation in shared activities. Church services. Family reunions. Weddings. Funerals. Baptisms. Holiness retreats. Potlucks. I’ve eaten more sloppy joes, coleslaw, and baked creamed corn than I care to think about. And I can toss a mean horseshoe.

I’ve also born the brunt of constant social violence, my entire life in that community. Continuous demands and requirements were forced on me, as a regular part of being part of the community. A lot of it was to enforce the appearance of neurotypicality — wear the right clothing, interact in the right ways, participate in the right activities, have the right interests, talk about the right things. I’m not putting the word “right” in quotes, because within that context, those were the right things. Everything other than the standard-issue, community-approved attire, behavior, activities, interests… those things were threats to the connection I had to everyone around me.

And they were not allowed.

Period.

If you did not comply, you were Out. And I mean Out. A lot of people left, over the years. I was one of those who split as soon as I could do so safely. I quit going to church regularly at 16. And once away at university when I was 18, I don’t think I went back… for years. I even broke from my family of origin for a number of years, just to get my bearings in the world. Community life had done its best to suck the independence and authenticity out of me, and when it didn’t succeed, it was vicious. Brutal. And not only to me, but to my extended family, as well.

When you live in that kind of community, if you screw up, your parents suffer as a result. And your siblings. And your aunts and uncles, your cousins, your grandparents. Anybody in your life who didn’t manage to steer you back to the straight-and-narrow was charged as an accessory to the crime of your “waywardness”. Everybody hoped, of course, you’d come home like that prodigal son. But in the meantime, if you weren’t around to pay for your sins, someone else would be made to pay.

So, when I hear people lauding the idea of autistic community, I have to smile. It’s a crooked, sideways smile that doesn’t reach the whole way across my face. Because to me, community doesn’t imply the same things it apparently does to others. And I wonder if people are genuinely aware of what’s truly required for community to thrive and survive? It’s not just about bringing people in and accepting them. It’s also about keeping certain types of people (and behavior) out, and establishing what’s not acceptable under any circumstances.

Community can be brutal. There’s just no two ways about it. And if we’re to truly build a new type of connection with others in an ever-expanding network of support for our autistic kin, we need to face that fact — and decide what we’re going to do about it.

Personally, I think we can use our autistic minds and perspectives to build something very different from the type of “neurotypical holodeck” I grew up in. That world was spawned in the trauma of 13th century western Europe. And it’s dragged a lot of pain and suffering along with it into the 21st century. There’s no need for us to replicate that. Yes, trauma and drama are very much a part of our autistic experience, but we’ve got a lot of very creative thinkers in our midst, and we’ve got a huge range of abilities and interests and capabilities and voices who can contribute to the discussion.

Provided we can actually listen to each other.

Which is an open question in my mind, to be completely honest.

Anyway, I’ve been thinking that rather than having a monolithic overall “autistic community” per se, autistic community might actually consist of different “pods” of interconnected folks who share deep connections in specific areas. And it may actually be less of a noun than a verb. Community is something we do, as well as something we have. It’s a living, breathing, thrashing thing/process.

And I’m building my own community, as I go, finding my own “tribelet” where I can. As for the larger community, it can be a bit of a trash fire at times, but I don’t have to engage with it.

It’s all an adventure. It’s all an unfolding process.

That’s half the fun.

And half the pain.

Of #autism and tardigrades – does naming a thing confer ownership? #SelfDXIsValid

tardigrade

And God said, Let us make man in our image, after our likeness: and let them have dominion over the fish of the sea, and over the fowl of the air, and over the cattle, and over all the earth, and over every creeping thing that creepeth upon the earth.

Genesis 1:26 (KJV)

And Adam gave names to all cattle, and to the fowl of the air, and to every beast of the field;

Genesis 2:20 (KJV)

So, God creates Adam (man) and awards him dominion over all the creatures of the earth. Over “every creeping thing that creepeth upon the earth”. And God also confers to Adam the right to name all the creatures. Naming, ownership and domination have gone hand-in-hand for an awful long time. And periodically, it rears its head in the autisphere in an almost predictable way.

Once again, the issue of whether autism “self-diagnosis” (self-DX) is valid, flares up on Twitter.

It’s the same discussion argument that keeps coming up, time and again. I’ve had my own back-and-forth with people who started out wondering aloud if their opposition to self-DX might be their black-and-white thinking acting up again.

And I, in my apparently amazing Svengali-like power, have managed to so sufficiently piss them off, that they decide… No, it’s not really their admitted black-and-white thinking blocking them. Self-DX is NOT valid, they say. Impossible!

I always have to wonder about people who feel entitled to judge and police others. I understand the desire for intellectual purity and a clear-cut set of guidelines that clearly demarcates the “autism community” (such as it is). I understand the need for clarity, for standards. I understand the attractiveness of having gatekeepers blocking the intrusion of Munchhausen-esque pretenders who are looking for attention and a little drama. And I understand the need to establish official boundaries around who lays claim to scarce resources (tho’ on that last point, let me be absolutely clear that scarcity of resources is a result of political choices, and there are ve$ted interests who have a $take in awarding and denying services, so that last point is a jagged little bone that tends to get stuck in my craw).

Here’s the thing, tho’… Autism isn’t something that any one scientist (or a whole gaggle of them) invented. It’s something they identified in conceptual terms they could clearly communicate to the rest of the world, and subsequently diagnose, treat, and otherwise establish dominion over those whom they diagnosed.

They may have invented the conceptual framework for thinking about us and identifying where we fit in the world, but they didn’t friggin’ invent autism. Kanner didn’t. Asperger didn’t. Bleuler didn’t. They just noticed it. Documented it. Wrote shit down about it, and went on to science (and in some cases commercialize) the heck out of it.

And because they didn’t invent autism (I don’t care what Dr. Grinker says about it), they don’t have the right or the ability to say, one way or another, whether a person is autistic or not. God knows, they’ve fucked up often enough to call their expertise into serious question. If those same scientists drove cars the way they identify autism, they’d all have lost their licenses years ago. Or they’d be doing hard time for having run so many people over. Repeat offenders, many of them. Producing shoddy research. Misdiagnosing or denying autism diagnoses to people in genuine need of assistance. Playing gatekeeper to an amusement park full of rides that lock you into the seat permanently and spin till you’re nauseous and throw up all over yourself and everyone around you.

And yet, magically, they still get to keep their credentials. They do their shoddy research. They do their awful assessments. They deny and screw up and never think twice about the effect they’re having on others.

But, they’re the “experts”… right?

Here’s the thing that completely baffles me, when it comes to mental health folks and scientist-like individuals who screw up the autism thing. It seems to me (from the outside, admittedly), like they’re constantly covering for each other. And rather than taking each other to task, they gloss over the omissions and commissions with some non-committal “Well, there’s still a lot we have to learn” or somesuch. This is completely inconsistent with the behavior I’ve observed in mental health professionals I know (and I know a lot), who are always at the ready, quick to jump on each other and call each other out and warn you away from such-and-such a therapist, in matters like unresolved trauma, family dynamics, couples therapy, and any number of other hot-button psychotherapeutic topics.

And yet, when it comes to autism… silence. No judgement. Not even a constructively critical peep. Nope. It’s all “Well, nobody but a professional can actually diagnose you as autistic. That’s just how it is. Oh, and here’s my card…”

How does that work exactly? Seems that autism is good business, all around, and everybody’s looking to cash in on it. It’s just autism, right? And the people who are harmed by the most enterprising types, are the ones least likely to protest, to defend themselves, to make a stink.

Yeah…

So, about those tardigrades — teeny, tiny little micro-animals that can survive in outer space, as well as impossibly harsh conditions (like, a degree above absolute zero)… Unless you have an extremely powerful microscope, you can’t see them. And until we had the equipment, they might as well have not even existed. There’s a whole lot of stuff (animals, planets, star systems, chemicals) which we’ve only recently discovered in the past 100 years. It’s safe to say, those things have existed throughout time — and many will continue to exist, long after we’re gone. Just because someone noticed they were there, gave them names, and figured out how to study them, doesn’t give those people ownership of them. Nor does it mean they invented them.

They simply noticed they were there and put words to their observations.

Kind of like autism.

Just without the dehumanization that comes with all the Theory of Mind and “locked in” bullsh*t.

So, the next time somebody tells you that Kanner or Asperger “invented” autism, or behind-the-times “experts” are the only ones who are qualified to say you’re autistic, I invite you to join me in a hearty, boisterous laugh.

And then just walk away.

#Autistic Day After – Roaming around the house with my headphones on

field with blue sky and clouds overhead

I had a very productive day, yesterday. I did so much that I’d been wanting to do. I wrote some things I’m very happy with. I drove around and did my errands. Shopped. In more than one place. Even went into a big-box office supplies store and… browsed! Imagine that. Usually, the overhead lights and myriad choices keep me from getting anything other than what I specifically came to buy (and wrote down on my shopping list). But yesterday, I improvised. And I found some pretty cool stuff that I’ve been needing. Okay, so I also picked up a movable computer workstation, which I don’t have room for (yet) in my house. But it was a bargain! 75% off the normal list price! So, that was — intellectually speaking — a triumph.

I refuse to let the fact that I don’t actually need it, to deter me from my sense of victory. 😉

I got so much done — and these were important things I’d been delaying for far too long. Yep, I finally got the audio workstation up and running, and in far less time than I expected. I broke up the task into two separate sessions, and I kept at it, till I reached a satisfactory conclusion. I scrubbed the shower walls. I organized my study. I removed the stacks of books and papers from the folding table set up in the dining room, which had effectively turned it into an alternate workspace for me. My dining room is now — almost — a dining room. I added a lamp to my upstairs study, so I can now see what I’m doing. I threw away stuff — including leftover doo-dads from a job I left over 2 years ago. The bag had been sitting in my study (of course) the whole time, as though I wanted to hang onto the memories of that old job.

Note to self, those memories are flawed. It wasn’t that great of a position, and in the end, it probably set me back. It’s just your alexithymia messing with you again.

I got my power cord from work, so I can work from home tomorrow, and I figured out where and when I probably lost my old power cord. I bought myself a battery-operated, cordless weed trimmer, so I can edge back the encroaching growth that’s responding to all the rain we’ve had with an explosion of enthusiastic green. I love having it this lush, after years of too little rain. But I’m starting to feel hemmed in. Today, I’ll give the tool a try — after reading the instruction manual, of course. Don’t want to maim myself in the process, which I have a tendency to do.

I dropped something on my toe, and it’s bruised and painful. But it’s not swollen and I can move the toe, so I won’t be going to the emergency dept for it. I’ve had broken toes before, and I know what to do for it, if it is broken. I don’t think it is. My feet bruise easily, and it feels more like a bone bruise. I’ve had this lots of times. I’ll just follow the standard protocol. And avoid the hospital. By all means.

I handled yesterday like a total boss. Even when my plans got messed up, I adjusted. I pivoted. I adapted. And I had a nap in the afternoon, which was good. I had a nice balance, and at the end of it all, telling my partner about everything I did overwhelmed her. Just thinking about everything I did made her head spin — metaphorically, that is! 😉

Today, of course, I’m paying the price for my hyper-productive day. My right knee is sore, for some reason. My head feels like I’m underwater. I’m in a bit of a daze. And I’m going to do far less today, than I did yesterday. Fortunately, I can. Because I got so much done. Today, I can relax. A bit. Just let myself be.

The biggest news, I’m happy to report, is that I’ve given up.

As in, I’ve given up having a lot of attachment to outcomes, when it comes to other people. Things I undertake. Plans I have. Projects I’m pursuing. I’ve been far too attached to the idea of specific outcomes, specific reactions, specific progressions of what-happens-next. I’ve gotten all caught up in the hopes and fears and dreams of what-may-be… and it’s blocked me from really focusing on what’s in front of me. Having a specific outcome in mind has ironically kept me from actually achieving those things. I’ve gotten so twisted up in thinking things need to go A Certain Specific Way, that when they don’t go that way, I’ve suffered.

Lord, how I’ve suffered.

When someone doesn’t react / respond the way I was hoping (which has been happening a whole lot at work, lately), I spend way too much time ruminating over what I did wrong, what I can do differently, why they did what they did… and it’s never a productive use of time. My partner has been unpredicatable, lately, too. Some of her good friends are seriously ill. And the partner of one of her colleagues just died from complications due to a condition that my partner has – albeit in a much less severe form. Cue the anxiety. For good reason. And all the work I do to help assuage the fears and reassure her… well, it’s not doing that much good, these days.

When my plans fall through, when stuff happens that screws everything up that I’ve been working on (which is also happening at work a lot, lately), I take it personally and get all mortified about things not going the way I promised they would. I have to report on my progress to people, and it seems like in the past months, I end up having to back-track and revise my story, every week or so. It’s really distressing for me.

These are the things I’m giving up. Getting all invested in things turning out a certain way. Putting on pressure to get things to happen a certain way. Pushing and advocating and all that other crap, that I’m supposed to want to do, for the sake of personal productivity and effectiveness. Oh, sure, I’ll continue to do it all — I’ll put on a good show. But put my heart into it? Nope. I’m done with that.

Just like I’m done with getting all bent over crap I’m supposed to care deeply about. I don’t care deeply about so much of this neurotypical, mainstream B.S. that’s supposed to be so important to me. Who cares? Who the hell cares? I certainly don’t. And I’m not sure why anybody else cares, either, except maybe to fall in line with the rest of the crowd and feel like they belong.

So, what’s all this got to do with roaming around the house with my headphones on?

A lot.

I put a lot of myself into yesterday. I sank a lot of effort, a lot of attention, a lot of my coping skills into everything I did. That was mostly for everyone else’s sake, to be honest. For the sake of my obligations to work, to my partner, to the neighborhood, the town, etc. Today, I get to spend the day on myself. I do have some stuff I need to do later. But that’s later. Right now, I’ve got my headphones on, I’m wandering around, alternately staring out the back door at the bird feeder, and curled up on the living room couch reading Austin Shinn’s book A Flickering Life: A Memoir of Autism (which I’m really enjoying and marking up sections to comment on later). I’ll go out for a walk later, just take my time strolling up the road and back. Then I’ll have a nap. I think. That’ll give me time to recharge my internal batteries, so I can finish up the must-do stuff this afternoon.

But right now, it’s time to eat some cereal, wander around the house listening to music I love, and chill.

 


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What’s in a word? Of the semantic sense and sensibility of #autism

Loomes paper wordcloud

Gill Loomes was kind enough to forward me her paper It’s only words: a critical ‘insider’ perspective on the power of diagnosis in the construction of autistic social identity. I’ve been reading it – and re-reading it – over the past couple of days, and I’m finding (and re-finding) a lot of thought-provoking ideas therein.

Every autistic person seems to feel differently about their autistic identity. They can feel differently from others, as well as differently within themselves, from time to time. I know I do. I first self-identified (actually self-diagnosed, because in the spirit of diagnosis, I identif[-ied] the nature of (an illness or other problem) by examination of the symptoms. I looked at a whole array of symptoms I’d experienced and struggled with over the years, and I used them to identify the nature of the problems I was experiencing in life.

Ironically — or perhaps quite logically — once I had a “diagnosis”, I gradually stopped needing one. How does that work? Well, once I had a thorough understanding of what made me “tick” (not in the stimmy way), what made things harder for me, what made things easier, my problems stopped being problems. And what sometimes felt like an illness actually led to a level of understanding that relieved — even prevented — so many of my symptoms.

And gradually, I’ve come around to feeling like I identify as autistic, more than I am diagnosed. I’m disinclined to the medical model — as useful as it was to me, once upon a time. — and I seem to be approaching a new juncture in my life. Much as Gill seems to be in hers:

I’ve spent years trying to find out more about this so that I could explain myself. I’ve worked so hard. I’ve studied. I’ve spoken. I’ve written and I’ve taught. But I’m tired of having to justify myself. I’m tired of fighting to explain that autistic women are different – different from other women, different from autistic men. I’m tired of trying to set myself apart by explanations that are unique to autism. I’m tired of it because it gives the words in my diagnosis, along with social understandings of autism, a power in my life that I’m sick of – all in the name of making me ‘other’.

Our differences are indeed our distinction. For good and for ill. And the words we use to describe ourselves have power. They are social currency – the meanings they convey and evolve are powerful agents of change. And from one culture to another, from one person to another, they can create different kinds of change. It’s all very complex. Dynamic. And yes, confusing.

One of the ways that I differ slightly from Ms. Loomes, is how power is perceived. I think my situation is very different from hers, because I’m not “out” as an autistic person. Just to my partner. Not to my extended family. Not to my workplace. Not even to my PCP/GP. Autism, for me, is a very personal thing — a phenomenon I don’t want to hand over to others for their interpretation, lest it be trampled like pearls before swine. People just don’t “get” autism. They have their ideas about me. I really don’t feel the need to get into it with them — perhaps because I sense the following will happen with me:

I’m tired of it because I believe strongly that this power comes not from the autism itself, but from a society that cannot tolerate difference, and that especially cannot tolerate unnamed difference. If you can’t find the words to articulate your difference – and the hurt, the brokenness and the vulnerability that it causes, then those things can’t exist – you are told that you are ‘normal’ or that, ‘we all feel that’. Well I’m fed up of this power – the power of a diagnostic label to account for, and to own, my inability to conform.

Because I haven’t shared my own diagnostic label, the society I inhabit doesn’t have that same power over me. I live in a country which violently opposes difference, punishes (sometimes kills) people who don’t conform and comply, and cannot tolerate any nay-sayers in this land of Golden Opportunity. God forbid I should be less than enthusiastic about my chances in life. God forbid I should be honest about my misgivings about the future of this nation, this culture. God forbid I should be anything less than proactive and positive and can-do in every damn’ thing I undertake. The forced optimism is tiresome and tiring. And autism is the ultimate “downer”.

What? Me autistic?! How could that be?

I find myself extraordinarily weary today. It’s been a long week, and I’m cranky. I’m tired of my job. I’m tired of my life. I’m tired of all the many and varied ways my life is more difficult than it needs to be. It’s a holiday weekend, but it doesn’t feel like a holiday. It just feels long. And there will be fireworks on Monday night, which I am dreading. I hate fireworks. Always have. They’re pretty, sure. But all that noise. And the crowds. And the change to my routine. Even if I stay home, I’ll still be “treated” to an intermittent barrage of bangs and pops and crackles and booms. It’s inescapable, this weekend. And I just now realized how it’s weighing on me.

So… earplugs.

But enough of my digression. Back to topic…

The power that words have is considerable. In the wrong hands/mouths/minds, they can wreak havoc.

how all-consuming this explanation (and one’s reliance upon it) can become. I’ve been so passionate about this idea. I am an autistic woman. I am not a woman with autism. Autism is a pervasive developmental difference and it affects every part of me. I don’t dispute this, but this is not where I suggest the problem lies. I argue that the problem lies not in the pervasiveness of autism in me as an individual, but in the pervasiveness of its use as an ‘explanation’ at the level of specific, observable behaviour – an account for everything that I am and everything that I do.

Melanie Yergeau talks about this in her paper  Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind. She talks about being disenfranchised from her own voice, being literally told that she wasn’t speaking for herself, articulating her own experiences.

Suddenly, the experts claimed, I wasn’t talking. God, no. “That’s your depression talking,” they explained. “That’s your autism talking. That’s your anxiety talking. Really, it’s anything but you talking.”

. . .

Regardless of what I said, it was my autism saying it. My body became site for ventriloquist rhetoric, words that never were. While conversing with the EMTs, desperate to appear sociable and “normal,” I found myself narrating my every anxious action with, “That was a pre-programmed response. That was a pre-programmed response.”

I do not know what they wrote in their charts. In my depressive moments, I tend to imagine that they mapped the ebbs and flows of my echolalia, in echolalia. “That’s just her autism talking,” the clipboard repeats, like a running toilet. “That’s just her autism talking, talking, talking. That’s just her—autism talking.”

When autism is considered a diagnostic category (which it is, according to the DSM-V and the ICD-10), it’s considered the domain of the professional class, a caste of conceptual overlords who may or may not deign to notice you, who may or may not dispense formal recognition upon you. I have the same issues with autism being in the DSM, as I had with homosexuality being listed (until 1973). It’s a difference, not necessarily a disorder or a disease. And yet, there it is — a condition, possibly co-morbid with a range of other issues… awaiting treatment.

It’s always problematic, when you hand over your self-definition to an official term-dispensing body of experts who work by committee and tend to change their minds from time to time. It puts you in a precarious position, and yet… For many of us, engaging with an amorphous diagnostic group-think entity is the first step towards getting a solid conceptual foothold in who we are, what makes us “tick”, what can help us “tick” differently — or perhaps stop some of the most bothersome ticking from even happening.

It’s also a first step towards securing a place in society. Especially societies which have low tolerance for divergence from their preferentially enforced norms. As Gill says about her own autism diagnosis:

I need this explanation because the world is unkind and does not tolerate difference. Anything that strays too far from ‘normal’ gets stamped on, unless it can account for itself and make itself legitimate – legitimate in terms that are acceptable to the social world. And so, my diagnosis takes on a social life of its own.

It’s a slippery slope, isn’t it? You need it, and then you struggle because of it. You want it, pursue it, and then can be used against you. But if you don’t have it, you run the risk of getting stamped on. And if you do have it, but you don’t tell others, you run that same risk.

Ultimately, it’s really up to each of us, how we engage with our identities, how we understand ourselves. How we navigate our social worlds. In the world I was raised in, nobody was really allowed to “use” disability — hidden or otherwise — to get accommodations. You sucked it up. You took a handful of pills. You did your duty and you did your job. If you died on the job, you were practically a saint. And if you sacrificed your own health and well-being for others (but still kept going, kept giving, kept suffering), you were given special consideration and held up as a shining example for all others to follow.

Chronic pain? Stop complaining. Everybody has pain.

Anxiety? We’ve got a religious denomination for that.

Digestion problems? Eat more of what’s bothering you, so you get used to it. Or, if you have to avoid certain foods, do so discretely. Don’t inconvenience others with your weakness.

Sickly? Fevered? If a handful of pills doesn’t fix it, remove yourself from polite society until you feel better. If you never feel better, we’ll arrange a nice burial for you.

In the context of today’s world, this all sounds cold and unfeeling, and yes — it is/was. There are still a lot of people who feel that way. That’s one of the reasons I don’t spend much time in that part of the world. That socio-cultural cocktail of religion, work, pills, and powering-through stopped working for me, decades ago.

That’s one of the big reasons I don’t discuss my autism with my family. In their minds, if you’re struggling enough to talk about it, you must really be struggling. So much so, that you’re just a little less than human. I worry about this happening:

the use of my autism as a pervasive explanation of who I am and what I do robs me of agency, of ownership, and ultimately of the
chance to learn and grow. In the case of pain, or of failure, we feel a need to name these – to account for them and to attribute them. Therefore, in moments of worry about (potential) failure, my story becomes:

“Autistics can’t do that. My autism makes that impossible for me.”

I think this world has a long way to go, before people with significant differences are actually accepted and treated with the same levels of equanimitous calm as standard-issue hyper-normative individuals. People have a strange way of limiting you, when they slap a label on you. And it all depends on their interpretation of the label. Of course, some labels can be empowering — granting you folk hero status. But in the end, these are essentially conceptual shortcuts, containers for collections of complex concepts which vary in significance from person to person.

The real question, in my mind, is what we do with our labels, and how we engage with them. We can’t help but use them. We can’t help but think about them. But what else can we do with them? Certainly more than we have, thus far.

… if you want to help those autistic people who are in pain, from failing according to society’s expectations, you can’t just do this by finding out more about autism in order to give words to our failure to conform, so that we are ‘off the hook’ (though still ‘different’, ‘other’, ‘broken’). You need to – we need to work to make the world a more comfortable, more  loving place for everyone to fail according to the harshness of society’s expectations and demands, and to learn from those failures and hurts (because, apart from anything, one of the best ways to make me comfortable with failure is to enable me to see others very obviously failing and recovering. Imitation is one of my learned skills – let me use it!). Otherwise we can’t grow – and we in turn cannot shape society.

I’ve personally seen how sharing my own failures and triumphs (in spite of those failures) has done others good. It’s mostly in my real life — attending meetings where I had to take full public responsibility for screwing up certain important tasks that messed up an overall project, then worked overtime to make up for it… admitting that I forgot something important… ‘fessing up to other various royal screw-ups that I was sure would alienate everyone around me, but somehow ended up endearing me to them all the more… At their core, people understand that others mess up. they can relate to people who do. And they look up to those who can recover and move forward.

But if I chalked up my failings to autism (which always plays a role)? What then? I’m none too sure that the otherwise kindhearted and compassionate folks who forgive me now for my apparently neurotypical infractions, would be comfortable with my autistic shortcomings.

Who knows, though? Who really knows? I might be exaggerating their reactiveness, but I’d rather err on the side of caution. There’s a lot at stake, not least of which my independent agency and standing in the world. I have a reputation to uphold — not because I care about what others think of me, but because that’s keeps me employed, so I can put food on the table and keep a roof over my head. I also like to buy a new pair of shoes, when my old ones wear out, every 5 years or so.

In the end, I think that our understanding and acceptance and relationship towards our autistic identities is also very spectrum-y. We go through cycles. We change our minds. Sometimes we suspect we’re not even on the spectrum, then something happens and we think, “Silly me! How could I have ever doubted it?!” And I think we should be given that freedom to question, to explore, to doubt, to reconfirm — both within ourselves and in the larger autism community.

Whether we’ll ever get that same latitude in the neurotypical world, is anybody’s guess. But we can at least start within. We can at least be our own best friends and provide the freedom we know we need — in exactly the ways we need it.


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