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.

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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.

Sharing : Rethinking Autism: From Social Awkwardness to Social Creativity

Instead of viewing people with ASD as “socially awkward” individuals who need to be “fixed,” we should instead conceptualize them as socially creative. They may not do things the “right” way, but they do them their way.

Read the rest of this great article here

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

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

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

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

How I get #autistic accommodations (in White America)

Thumbs up, thumbs down

Updateautistsix just raised an excellent point that this situation could be cultural. And I agree. It is cultural. It’s White All-American, not All-American in general. Let me fix that in the text below.

Woo hoo! I just checked my Social Security statement, and it looks like I won’t necessarily be destitute when I get to my 70s. Now, this is assuming there actually IS a U.S. Social Security Administration and money – which is not a safe assumption, these days.

But I’m pretending that all the money they’ve removed from me over the years is going to be there when I need it. Let’s just pretend. For the sake of taking the pressure off.

But enough about that. I want to share a little thing I learned about how to get accommodations for autistic myself, when things are rough with me.

I can get pretty marginal at times — intense pain, off-balance, terrible sense of where I am in space, slow processing and reaction, a sharp temper that explodes out of nowhere, highly sensitive to light and sound and touch.

Times like those, I need to get accommodations and relieve some of the environmental pressures that are making everything worse.

The problem is, I can’t actually ask for them.

When I tell White All-American people I’m having trouble — even with my spouse — they get defensive and frightened. Something about my vulnerability triggers them big-time, and they not only start getting antsy, but they treat me like I’m less intelligent, less with-it, less capable, overall. As though an upward spike in my needs turns their world upside-down.

I’ll spare you my rant about how immature and “snowflake-y” that reaction is. That’s just how things turn out, at times. Especially with White Americans, who seem to have this zealous, almost religious devotion to the myth of self-sufficiency and fierce independence. Don’t get me wrong, I’m White, too, and I am fiercely independent. I’m most comfortable being self-sufficient. But everybody needs a little help, every now and then. And that includes me.

What to do?

Well, I just turn the tables, and rather than being a victim in need of assistance, I position myself as the master of my own situation, who’s managing my life pro-actively and being positive and masterful and ever-so-in-control, so I can “knock it out of the park”. As much as I hate sports analogies when it comes to living my life, and I detest using action verbs to describe a relatively blah, ordinary activity (like saying “jump on a call” for making a phone call)… well, that’s the vernacular of my environment, so I guess I’ll defer to the conventions.

White Americans seem to respond best to pro-active and positive spins on things that make me look like I’m “on top of things”. (I hate that expression, too, by the way — it messes with my literal mind — but I’ll use it nonetheless… vernacular and all.)

Here are some examples that work really well for me:

  • Rather than saying, “Oh, ouch! That sun is so bright and hurts my eyes!”, I put on my sunglasses and strike a pose with my back to the sun.
  • Rather than shrinking away from others when they reach out to touch me, I take the initiative and make contact with them first, before they can get to me.
  • Rather than asking for shorter working hours at the office, I schedule calls first thing in the morning, so I have to take them at home — or I block off time at home to work on things that don’t require me to be in the office — and I organize my daily schedule around my own needs.
  • Rather than dreading being interrupted and startled by someone talking to me when I’m not ready, I get pro-active and address others before they talk to me. If I get ahead of it, I set the stage for the interaction, for the exchange. And I get to set the tone of the conversation, which All-American neurotypicals just love. They love to have something to react to, so I give them that. I “run” the conversation, so they get to be part of a social interaction — and I do it in a way that lets them be successful. Oh, how they love following a leader — so I play that role, and they really respond well. I don’t always get what they’re saying in response to what I say, and our exchanges don’t always make any sense to me at all(!), but at least I can complete the interaction successfully.
  • Rather than telling people about how exhausted I am, how I can’t think straight, and I’m in intense pain, and I just need to collapse in bed in a completely dark window, I tell them I’m prepping for a big day tomorrow, and I’m going to get some extra sleep so I’m at my absolute best. Nobody needs to know how vulnerable and absolutely beset I am by everything. If they do find out, they get way too nervous for my comfort. They don’t know what to do. Ahem… Uh… Ahh… Er… So, I spare us both the awkward situation and spin it in a different direction that makes me look good.

When I actively reframe my vulnerabilities as points to pro-actively manage (with the illusion of CONTROL), and I assertively do just that — manage them — it puts me in a positive light and it also sets me up as the kind of person that others can depend on. I set the tone of the situation, which White All-American neurotypicals respect. And I get to dictate the terms of my demands.

Don’t get me wrong – I have no problem with my vulnerabilities. They don’t embarrass me. They don’t horrify me. They are what they are — weaknesses, deficits, vulnerabilities. But I’ve learned from a lifetime of hassling with clueless people who spook easily, that I can get accommodations much more easily and more effectively, if I frame them as demands I’m making in order to operate at peak level, rather than just making do to barely get by.

And there we have it.

Stella and the imperfect #autistic storm

person wading through keep snow on a winter hike in the alpsWe were supposed to have an awful, terrible winter storm yesterday. It was supposed to shut everything down for two days in the area where I live. Driving home from my parents’ place in Pennsylvania on Monday, we passed one sign after another on the highway warning about blizzard conditions for both Tuesday and Wednesday.

Well, it’s Wednesday, And it’s a bright sunny day, with beautiful blue sky and white puffy clouds floating around. There’s snow on the roads in places – especially on the back roads – and the sides of Main Street are piled high with plowed snow. But in terms of Snowmageddon, this was pretty much a non-starter. If anything, it was just another winter storm like many we see in New England. In fact, it was one of the less dramatic ones.

We’ve had storms in the past that dumped 27 inches on us in the space of a day. We’ve also had years where one storm after another dumped several feet of snow on us, day after day, and the snow was so high, I couldn’t see many of the big rocks in my backyard. I know we’ve had a lot of snow, when my backyard is a flat white surface. That rarely happened this year, and it certainly didn’t happen after Winter Storm Stella yesterday.

All of the drama and all of the anxiety about Stella reminds me of the drama and the crisis that often gets spun up around autism. I just spent four days with people who are very spectrum-y, and not once did I feel like there was something wrong with me when I didn’t make eye contact, or I stimmed, or I flapped my hands. This was true both inside my parents’ house and outside. My quirky nature has always been seen as just who I am in the place where I grew up. That doesn’t mean it was easy growing up there, but it does mean that all of my characteristics which the mainstream considers dysfunctional are simply considered attributes of my personality, which needed to be adjusted or mitigated or managed in some creative ways, to make it possible for me to interact effectively with my family and the larger community.

It seems to me, that the drama around autism is roughly akin to the drama the people in southern states feel when they get 6 inches of snow. All hell breaks loose, everything grinds to a stop, and the regular flow of life is completely disrupted. For those families who are not comfortable with the characteristics of autism, or who have different standards of behavior and being, I would imagine having a child who does not conform, does not comply, and seems to ostensibly have no capacity for doing so, would be roughly the equivalent of living in a tropical climate and getting 6 inches of snow in a day’s time.

For those of us who are familiar with heavy snow storms, we take a 27 inch storm in stride, and to have the equipment and the attitude and the skills to handle heavy snow falls, it’s really no big deal. Likewise, when you understand the rigors that accompany autism, and you can read the signs, you can adapt, and you adjust accordingly. It’s not at all a horrible epidemic pox that brands you and your family as rejects for all time.

That all being said, with autism awareness month is right around the corner, it seems like everyone is gearing up for yet another version of winter storm Stella. For those of us who know how to handle these things, it’s not always that big of a deal. Of course, it’s not easy, sometimes it’s damned hard, and it takes concerted work, just like clearing 1.2 metric tons of snowfall from your long driveway. But it can be handled. We can deal with this. It’s not the sort of thing that happens every single day to every single person, and we all handle ourselves with greater or less or degree is a facility, but still, it needn’t be a catastrophe, when it does show up.

As for me, today I am enjoying the snow. I am enjoying the last throes of winter. I am really enjoying the fierce cold snap, which makes my internal thermostat kick in and warm up, and I know from experience that whatever Mother Nature sends my way – whether in the form of snow or my autistic tendencies – I can deal with it. It’ll take some work, and it will take some doing, but it can be done.

And it doesn’t have to be a huge fucking deal.