Here we go again – well-meaning misrepresentation in portrayal of #Autistic #women — i.e., #thebigthings

Girl standing with an umbrella in a storm with fire Artwork by Mirella SantanaWell Autistic Bewareness Month isn’t yet over, clearly.

And I feel a big bad about writing this post, but I have other things I need to do with my life, today, and I need to get this out of the way.

So, there’s this play called “The Big Things” that’s running in London. About a man and his Autistic wife who has all sorts of reservations about becoming a mother. I haven’t seen the play, which somewhat limits my ability to comment exhaustively. I have read a review of it, as well as seen a fair amount of blog posts and Twitter conversations about what a disservice it does to Autistic mothers — and, from what I’ve ready, Autistic women, as well.

The one thing I have experienced directly is a SoundCloud recording of a Q&A session this past Friday evening. Paul Wady of the Guerilla Aspies performance group was on the panel to discuss Autism and the effects the play has on the Autistic community as well as women. You can listen for yourself below. Or not. Your choice. (Piece continues below the SoundCloud player)

A lot of things in the panel discussion raise “red flags” with me. An Autistic man speaking for Autistic mothers… the way he typified the Autistic community… the way that old pain from a really… unfavorable experience dating an Autistic woman, years ago, obviously colored his discussion about Autism and women in a larger sense.

The Q&A was held on a Friday night, and we know how many Autistic people are up and at ’em on a Friday night, after a loooonnnnnngggg week of dealing with the non-autistic world… not to mention Autistic mothers who, um, are likely mothering, fer Chrissakes. Sheesh, it just gets worse.

One of the things that bothered me the most about the recording — and I had to sit through something like 40 minutes of increasingly irritating / distressing discussion to get there (I know… poor me, right? 😉 ) — was a woman at the end saying that, surely some discussion about Autistic mothers is better than none! And we should just be grateful that we’ve been included.

Ugh. I don’t even know where to start with that. But let me boil it down:

  1. The idea that we should just be grateful to be included smacks of 1954. Back when well-coiffed women typically had their arms grabbed by men who steered them in the direction they wanted. (I’m thinking of all the scenes in Sabrina, which I watched the other night, when men were grabbing women’s arms and hustling them through some door, or in this direction or that — yeahhhh… cringeworthy, by today’s standards.) The idea that women should just be grateful to be included — and Autistic women, no less — to have a chance to participate. What year are we in, anyway? I don’t get that.
  2. Yes, raising awareness about the existence of some people can be beneficial. But what kind of awareness? Back in the early 1900s, there was a lot of awareness being raised in America about immigrants entering the country. This is what that awareness looked like: See what I mean? Now, to be clear, the kinds of cartoons cranked out around the turn of the last century were specifically for the purpose of inciting anti-immigrant sentiment. And Kibo Productions’ intentions were nothing like that. At all. But when we talk about “awareness” we need to be clear about what’s being communicated — and that there’s actually some truth to it.
  3. As for discussion, my main question is, how much actual discussion can or will truly take place? Are all audience members going to attend discussion groups or engage with others about the validity of this play? What’s more, let’s think about where we’re starting the discussion — in this case, from a deeply flawed and limited standpoint, which doesn’t give us much ground to stand on, or build a decent discussion on. It’s like trying to have a discussion about a butterfly, when all you see is a caterpillar, and nobody talking about the butterfly has actually seen one in real life, just memes on Twitter.
  4. The woman speaking up appeared to be speaking from the perspective of a non-autistic individual. She got a round of applause. Mmmm-okay. So people want to talk about this stuff. Great! Let’s start by understanding what the actual objections are, validating them, and working from there. Not saying the equivalent of, “Oh, you’re getting all worked up over nothing.”

Autistic women have been dealing with this kind of stuff — invisibility, being discounted and dismissed, people telling us “why are you so upset?”, not to mention being gaslighted about “making stuff up” — seemingly since the beginning of time, and it gets old. How unfortunate, that no Autistic mothers were actually able to attend the Q&A discussion. Woulda been great, not to mention valid, to include them in the discussion.

I’m not an Autistic mother (I deliberately chose not to have children for personal reasons), so I’m not going to put words in anyone’s mouth. Sonia Boué and Katherine May and others have done a fantastic job of responding. I’ll post their work on this blog when I can — it’s really, really good.

This of course is an ongoing situation and new developments are happening, every time I go back to Twitter. Which is both bad and good. It’s bad because it shouldn’t have happened in the first place, and it’s good because now we get the chance to turn things around.

If only we hadn’t been put in this situation, to begin with…

Live and learn, I guess.

A script for my #Autistic Monday morning

three abstract people figures talking to each otherI am not looking forward to going to work today. I worked from home all week, last week, and it was wonderful. I didn’t move as much as I should have, and I ate more than was healthy, but I got to rest when I needed to, and I wasn’t subjected to inane interactions, like I’m about to be, in a little over an hour.

I detest vacuous social interactions that serve no purpose other than to make other people feel less lonely. It’s a distraction. But I’ll do it.

The good part is, I’ve figured out how to do it without investing a whole lot of energy. If I just follow this script, I’m all set.

This is how it goes:

First, I see someone approaching me. It’s always best if I acknowledge them first, because other people are very reactive. They like having someone else set the tone of the interaction so they can just follow along.

Me (smiling and looking in their general direction): Hi! How are you today?

Them: I’m good, thanks! And you?

Me: I’m great! How was your weekend? Did you have a good one?

Them:  Something – something – something – something – something – something

Me (depending on their response): Oh, wow – that sounds great / frustrating / exciting (sarcasm used, if they had a terrible weekend)

Them: Yeah. Something – something – something – something – something – something

Me (whatever they happen to say): Oh, I know… Right?

Them: Laugh / meaningful look / some comment

Me: Tell me about it…

Them: Okay, well, have a great day!

Me: You too! Happy Monday!

 

And we’re done. That’s roughly how it goes.

Generally, I can get away with a few exaggerated expressions of “Oh, I know!” or “Right?!” that indicate I’m listening (maybe I am, maybe I’m not), and that I care. I do care. I actually do. But it’s a lot of energy, which I often don’t have, to get all invested in other people’s lives.

Especially when I fundamentally disagree with what they do with their free time and money.

I try not to belabor my interactions with judgment. Non-autistic people don’t understand, and it’s not a good use of time.

So, anyway, Monday awaits. I have to go in to the office today — Big Day for a project I’m working on, plus there’s some staff meeting I have to attend. Whatever happens, it won’t be boring. That’s for sure.

Although sometimes, boring would be fantastic.

Okay, off I go…

Working towards #Invisible #excellence

Picture of a large book standing open on a grassy bank, with a chair and tree between its pages and birds in the distance, sunlight streaming downThis weekend has been very much about art. And excellence. And solitude. And suiting myself. And working.

I wrote what I think is a pretty decent essay on Saturday morning. I was invited to submit an essay about the intersection of my queerness with the faith of my religious upbringing, and it was an intriguing proposition. It’s taking me places I haven’t “visited” in a long time. To be honest, I generally avoid … going there… because it can be so painful and so convoluted and so frustrating for me to think about it, let alone write about it in ways that others will understand.

I am seldom asked to contribute writing. It just doesn’t happen. I write a lot, I’ve written a bunch of books, and I blog pretty regularly, but I’m not in the publication ecosystem, if you will. When I was a kid, all I really wanted to do, was be a writer. That’s all I’ve ever wanted, and I’ve made all my job choices because of needing to protect my writing process. Shelter it from outside intrusions. Guard the time I have available to work. Center my life around it, in countless ways. That desire, that drive, has informed every single choice I’ve ever made, and one of the reasons I got involved with my partner, and stayed with her for 26+ years, is that she gets me as writer. She values that. She respects it. And she leaves me alone to pursue it.

I am such a writer. It’s not even funny. I’m rarely blocked. If anything, I have more material to write, than I have time to write. That’s been the prevailing theme of my life: So many words, so little time. And some of the words are actually pretty decent. I devote my waking hours to noticing things and thinking about them in ways that few other people do. When other people have read what I had to say, at times they’ve been amazed. If I felt more comfortable about it, I’d brag a bit on that point. But other people’s respectful notice of my ideas puts me off. I can’t help wondering, “Why is this so amazing to them? It’s just common sense?” And I can’t even begin to discuss it all, because I often come off as arrogant or stuck-up or condescending.

Sigh.

Well, I’m not sure I actually want to talk about my writing with other people, anyway. For me, writing and reading happen in a nonverbal space — where words and ideas and images all swirl together without needing to be spoken. When you add in spoken words, you overlay it with a whole other dimension of experience — adding a timbre, a frequency, if you will. A sense that was never there to begin with in the space where there is only the written / silently read word. It changes the experience of the piece. And I deeply regret listening to one of my once-favorite authors reading her work aloud. It ruined it for me. It ruined her work for me. Because for now and ever more, I’ll hear her intoning in a dramatic, almost hyperbolic manner the ideas that once struck me as solid and rooted in calm.

I hate talking about my writing with people. It’s like, if you get it, you get it. And there’s no need to talk about it. The work stands on its own as a separate entity in itself, with a sense that belongs only to the reader, just as the sense of writing it belongs only to me. Trying to embody each others’ experience… I don’t consider it a good use of time.

If you don’t get the work, there’s nothing I can tell you that’s going to make it any different. Nothing I say is going to create for you the experience I was hoping you’d have. You’ve got your own perspective, your own phenomena, your own version of the world. And that’s fine. It’s just not something I share. And in a way, I almost like it more when people really don’t get my work (and don’t pretend they do). It’s honest. It’s clean. It relieves me of the obligation to discuss it, to see what it meant to the other person, to pretend I want to connect with them over my creation… or rather, the creation that made itself available to me, that I could bring it into the world.

I know, as a writer, I’m supposed to strive to get my work the largest audience possible. Market the Muse. Get The Word out. I’m supposed to promote it. Support it. Get it in front of people. Social media! Facebook! Twitter! Pinterest! Instagram! Tumblr! And whatever else… Google+? Definitely SEO, so people can find it if they search for that sort of thing.

But that’s not writing. That’s promoting. And frankly, I’m not a fan of how the publishing industry has pushed the onus of publicity onto the shoulders of the writers. It makes no sense. We’re writers, for chrissake. If we were going to be marketers, we’d be marketers. Or am I missing something?

I dunno. I’m tired. I’ve had enough for one day.

Bottom line is (and I’ve written about this before), obscurity and I are on very good terms. And my obscurity allows me to focus on what matters most to me — the word, the sense, the feel of it all. The minute I lose that shelter, my inspiration starts to dry up.

So, I make my choices. I work in secret, in silence, in obscurity. If I handle this well, I’ll manage to create something genuinely excellent, before I reach the end of my road. Whether the rest of world knows about it… not my problem. What I know about, is.

Back to my Favorite Flow State

green and purple aurora borealis over water and lights of town

Well, this is good. The snow has finally melted, the weather’s warm, and I’ve got a renewed spark in my life. March was a beast, I have to say. It really drained me, what with all the snow and all the logistics.

But now it’s April. It’s really, truly Spring, and I’ve got a boost of energy coming into this month.

Yeah, I know it’s Autism Bewareness Month. That’s not my favorite thing. But it’s also not the only part of my life. Autism is big, of course. It’s a defining feature of my overall makeup. But other people’s confusion about what Autism is (or isn’t), is not high on my list of Fix It priorities, this month.

I’m much less interested, right now, in adjusting other people’s messed-up conceptions, than I am in creating the kind of world I actually want to live in. For all the talk about Autism and suicide (and I’ve walked that fine line with my own ideations, over the years), I’m not hearing as much talk about Autistic people creating the kind of world we want to live in.

Yep, it’s easier to critique others’ work. Others’ world machinations. Others’ philosophies and approaches.

And I’m happy to do it, myself, now and then.

But the way I’m feeling these days, I’d much rather funnel my energies into doing things Right, instead of constantly bemoaning (which is what can I do so well) when things are done Wrong.

That being said, yeah… my writing and publishing is coming back online. I’ve had a really rough several years at my current job. And I’ve tried to get out a bunch of times. I’ve interviewed, talked to recruiters, and I even had a job offer, at the end of last year. But I stayed put, for some reason. I just couldn’t bring myself to leave — mainly because the shiny new job had little to no opportunity to work from home, which is something that I absolutely, positively cannot countenance.

I need to be able to work from home whenever I need to. I need to be able to relax, not be constantly interrupted by environmental intrusions, and I need to lie down and sleep, now and then, when it gets to be too much. I’m still able to keep on track with my tasks list. In fact, I’m even better able to, when I’m home, because it’s so much less stressful than being in the office. I can actually think when I’m at home. Imagine that… Get into the flow… Settle into the work… Get stuff done. Magic.

The other reason I won’t work for a company that doesn’t let people work from home (because they say people abuse it), is because if your people aren’t fully engaged and loving what they do, then something is wrong with your culture. And dragging them into the office to do your bidding isn’t going to make them any happier. It’s a hostage situation, and I’m not doing that anymore.

Nope.

Hm… I think I’ve digressed. Where was I…?

Oh yes! Getting back into the flow.

My writing. My publishing. Digging out all my old writings and putting them out there. I’ve got a bunch of writing that’s languished, over the past years. Books I’ve started. Books I’ve even published (under the name Loren Stone). I’ve published a handful of lesbian novels – erotic and otherwise – and I’m working on more. I just had an idea for another book that also brings in the Autism theme, and I like it. I like it a lot.

Of course, I’ve got to get organized. I’ve got manuscripts in various  states of completion in a bunch of places. Pieces built on other pieces. And then I get inspired and another piece comes up. I’ve got poetry, too. Lots of it. Stashed. In several manilla folders in the file drawer to my left. Holy smokes, I’ve got so much work in progress, it’s wild.

Of course, I get down on myself, because I haven’t “done anything with it”. I haven’t kept my Patreon up to date. I haven’t even kept my Lore Stone blog up to date. I’ve been intermittent and noncommittal at times. And I’ve toyed with the idea of just dropping it all and walking away, when it felt like Too Much.

But that’s just my Autistic self looking out for itself. I have to watch my energy expenditure, and I’ve got so much going on in my life, I have to make choices. Drop some things when they’re not working anymore. Back off on certain objects of intense focus when my inner resources are spread too thin. Follow the change of the seasons. And just be realistic about what I can — and cannot — do, when everything (and I mean Everything) gets to be too much.

So, I’m cutting myself a break. I’m getting out of the business of planning everything out so, so carefully. I’m a program planner by day for my professional job, and it pays the bills. But when I’m left to my own devices, I really just want to flow. Let it all go where it will. Let myself go where I will.

And that’s what I’m doing, right now. I may change my mind in a couple of days, but right here, right now, I’m cutting myself a break and letting myself off the proverbial leash. I’ve got too much writing waiting in the wings to get all “planny” about it.  This stuff has to flow.

Just like me.

It’s all gotta just flow.

Refresh connection with Facebook? Hmmm…. maybe…

Message from WordPress to refresh connection with Facebook
This message comes up, every now and then, when I’m on WordPress.

Before you hit Publish, please refresh the following connection(s) to make sure we can Publicize your post:

And again, I need to consider whether I actually want to reconnect with Facebook.

I’ll admit, I’m reluctant. For all they’ve done (and not done) in the area of privacy and protecting their users, part of me just wants to drop them permanently and walk away.

Then again, I don’t really spend much time on FB, and it lets me get some of my writing out to a broader audience. So, it serves a purpose. It certainly does that. And I have so little actual personal information on there — nothing that I don’t already put on WordPress and Twitter — that whatever they may want to do with my info… good luck to them.

I think I may be Facebook-inoculated, because I’ve been in the high tech / online scene for so long. I worked in financial services for years, building websites to let people manage their money online, and I still, to this day, don’t think it’s a bright idea to do any of that stuff online. The fact that more people aren’t robbed… well, that surprises me daily. I’ve worked in online marketing, have built websites intended to be super-secure, and I know how the stuff is put together behind the scenes.

It’s never been nearly as secure as they say it is, and it’s always been a bit of a fools’ paradise (note the s-apostrophe, meaning all of us fools), so I’m not overly rocked by all this. Plus, it’s not like anyone didn’t already know Facebook’s “default mode is sharing”.

D’oh.

As in D’ohn’t come crying to me, when you finally realize that we weren’t just whistling in the wind about your life being up for grabs on social media.

Oh, is that mean-spirited? Non-compassionate? Maybe so. But seriously, it’s time to put the big-kids pants on and take responsibility for all this. Not just wail and gnash our teeth over crap we’ve been warned about, but chose to ignore.

Sigh.

Well, anyway, I’m having a lovely Sunday inside, looking out at the crows trying to unhook the suet cage from my bird feeder. They figured out how to get it off before, so I used a carabiner to hold that sucker in place. And since then, they haven’t been able to do more than perch on the top and peck at the suet. Frustrating for them, I know, but the woodpeckers thank me.

Yes, a lovely Sunday… I’ve got my fuzzy blanket thrown over my shoulders, and I’ve got my music on. Cozy, warm, and relaxing with some really wonderful reading I’ve been doing. An old, long-lasting interest of mine has cropped up again — iconoclastic Zen practitioners of the 16th and 17th centuries in Japan — and I’m digging into old Samurai stories with a gusto I haven’t felt in quite some time.

How pleasant. How incredibly pleasant.

And then, because I did so much yesterday and got a lot of errands out of the way, I can lie down and take a long nap this afternoon without needing to set an alarm. My favorite kind of nap — also good, because if I don’t set my alarm, then my mobile won’t be beside my bed, so I won’t spend an hour scrolling through Twitter, when I’m supposed to be resting.

I’m spending less and less time on social media, these days, including Twitter. It’s all turned into a cultural battleground, which is tiring. Seriously, they need better filters. I support the changes taking place, and I support the people standing up for their lives, but sometimes I just need a break, and social media has provided me with that in the past. Breaks are coming fewer and farther between, though, which is unfortunate.

Or is it? I need to unplug more, these days, anyway. I’ll just treat it as a great opportunity to chill and give all the fight-flight a rest.

Oh, you know what?

That got me to thinking… Maybe my decreasing ardor for Activist Twitter is due to my decreasing hormonal inclination to give a damn about stuff that used to drive me. Menopause seems to be cutting me a break.

That could explain a lot, actually.

But now it’s time to retire again to my cave-y little corner of the world, ensconce myself in a heady enclave of histories, myths, legends, and conjecture about what was going through people’s minds, on the other side of the world, 400 years ago.

Fun!

Catch you later.

Maybe on Facebook 😉

Social Incompatibility: Yet another thing that’s not true about this #Autistic individual

crowd of cheering people at an outdoor concertSupposedly, because I’m Autistic, I’m incapable of interacting with non-autistic people the way they want me to.

Untrue. I wish it were true, some days. ‘Cause all the interacting with neurotypical people just gets so exhausting. I’m bone tired, starting around 10:30 a.m., every single day I have to go out into the NT world. And I just get more tired, throughout the course of each day. The nonsensical decision making and priorities are just so wearing

But what’s an Autie to do? I’ve gotta make a living, and that means I have to get out in the thick of things, figure out how to navigate it all, and just get on with my life.

I also need to interact with other people on a regular basis. I can’t speak for anyone else, but if I don’t get out and interact with the world every few days or so, my thought process starts to get pretty “out there”. I get a little suspicious and paranoid, actually. And my mind starts telling me all sorts of things that aren’t entirely true. I need people around (in person, not just online) to provide details I’m overlooking in my very rigid thinking. I need them to keep me grounded.

It helps me.

But it’s not easy. Oh, no. It’s not easy at all. I mean, I’ve figured out some tips and tricks and whole lotta hacks that will get me through social interactions without offending everyone in sight and pissing off people who misunderstand me. But it doesn’t come naturally to me.

And therein lies the “rub”, as they say.

Because my hacks work. My clandestine stimming, concentrating on a place on someone’s face that isn’t their eyes, nodding periodically, using a finely tuned prosody and cadence to my speech… it’s all very effective. It’s attractive, even. Which means people want to interact with me. They love to interact with me. They seek me out. They come looking for me at work. They look me up online. They ping me on social media. They hang out with me at the 2 parties I go to, each year. They say they want to see more of me. They invite me to their homes. They invite me to events. They want me around, and they love my company, because I can offer them something they can’t get anywhere else — compassion, empathy, focus on them as the center of my world when I’m with them, interesting trivia (yep, got lots of that), laughter, relaxation, acceptance.

People love me. They can’t get enough of me.

In the words of the Talking Heads, “My god. What have I done?

It seemed like a good idea, to develop all these coping mechanisms over the years. And they have all helped me to get good jobs and keep them and provide for my household at a level that most Autism researchers would probably declare impossible for someone “with my impairments”. But it comes at a cost. It all comes at a cost.

And that cost is exhaustion.

Well, fortunately, I’ve figured out some ways to get through, even if I am worn down to the bone. I keep going. I focus on the task at hand. I amuse myself periodically throughout the course of each day. And I have my early mornings to myself, as well as part of my evenings. I manage to wedge in things I really love, here and there, punctuating the interminable slog that is my life in the non-autistic world with moments of sheer bliss.

So, that’s something.

And it makes the rest of my life possible. Which is good. Because nothing truly worthwhile comes easy, I believe. And I can’t expect the rest of the world to accommodate me. Other people have their own problems, and my challenges are not even on their radar. If I want to keep a job, stay out of jail, keep a roof over my head, keep the cars in the garage, save money for emergencies… basically, have an adult life, I have to make choices and sacrifices. That’s how the whole adulting things goes, and our current climate of hyper-customization and convenience and being catered to and accommodated at every turn is not helping people cope with the inevitable challenges of just living a responsible and rewarding life.

Life as I experience it is a series of challenges which involve to varying degrees a regular influx of frustration, pain, anguish, sadness, disappointment, disillusionment, betrayal… you name it. But that’s how it goes. And if I want to have the life I need to have, I’ve got to figure out how to manage it all.

Which I do. Including the social stuff.

That being said, I have to get myself ready for work. I’m going in to the office today, after being home yesterday (I had nonstop meetings on the phone from 8:30 – 4:30, which is its own particular brand of misery for me). I’m going to be around people who are unrealistic, insecure, demanding, politically devious, clueless, and socially needy. That’s the deal. And I voluntarily engage with these people, learning tons about myself in the process, and making a living at it, too.

I’m not a fan of it all. But they love me.

So, that’s something.

Employable Me looking for #autistic folks to profile about #employment

This showed up in my comments section the other day. Check it out, it might be a good opportunity.

Hi there!
I am the casting director for the American version of the award-winning BBC television series “Employable Me.”

The TV series I cast, “Employable Me,” follows people with Autism, Aspergers and other neurological conditions like Tourette Syndrome as they look for meaningful, long-term employment. The job-seekers selected to appear on our documentary series will be encouraged to unlock their hidden talents with the help of experts, doctors and neurological specialists so they can at long last find the job that best suits their unique skill sets and strengths and creates a sense of purpose in their life.

I am reaching out to you both with the hope that our current search for people who have neurological conditions and that manifest incredible intelligence that has not been appreciated properly by potential employers, might be shared with people in your social networks that might be interested in our series?

We’d love for our search for jobseekers to be mentioned there in the off-chance that people in a situation where their condition has been employment-prohibitive to date, but who have talent to offer and who could benefit from being a part of our series, will learn about it and apply to be considered.

A summary of what we are hoping you might be able to circulate for us in an email blast is below my signature in this email.

I highly encourage you to view some highlights of our courageous series as first launched in the UK: http://www.bbc.co.uk/programmes/b09hlpl8
Liz Alderman
Casting Director, Optomen Productions
Liz.Alderman@OptomenUSA.com
http://www.OptomenProductions.com

JOB-SEEKERS WITH NEUROLOGICAL CONDITIONS SOUGHT FOR AWARD-WINNING DOCUMENTARY SERIES, “Employable Me”

Documentary producers at Optomen USA are looking for people with neuro-divergent conditions such as ASD & Tourettes who would like our assistance finding employment on the documentary TV series EMPLOYABLE ME.

A diverse workforce can be great for a business and EMPLOYABLE ME wants to dramatically shake up the system to prove it.

The job-seekers selected to appear on our documentary series will be encouraged to unlock their hidden talents with the help of experts and specialists so they can at long last find the job that best suits their unique skill sets and strengths.

Contact Liz.Alderman@OptomenUSA.com for more information on how to be considered for this opportunity.

Optomen Productions produces hundreds of hours of television each year for many of the major cable and broadcast networks including Food Network, Travel Channel, Nat Geo Wild, Animal Planet, Investigation Discovery and Bravo. Our most successful series include Worst Cooks in America and Mysteries at the Museum.

Visit http://www.optomenproductions.com/ for more information about our company.

Employable Me Episode 1: https://vimeo.com/165440168/eeef45ba00

Employable Me Episode 2: https://vimeo.com/194704968/f29ee23b44

Employable Me Episode 3: https://vimeo.com/165440167/911b02b210

Next up: Some time to sink into the Flow

abstract painting flow
Well, my duties have been discharged for the year, and now I’m free to do what I like with my time. Well, mostly free. I “clocked out” at 12:08 p.m., after answering a last-minute email from a colleague in Ireland. He was emailing me after his business hours, so I might as well be considerate. Then I turned on my email auto-reponder informing the world that I’ll be back in just under 2 weeks, and now I’m “free to move about the cabin”, as it were.

I love this time of year. I really do. I like the long nights. It feels warmly enveloping, even if it’s below freezing outside. I love the darkness and the short days. Sadly, the days will be lengthening after tomorrow. Oh, well… Maybe I’ll move to a Nordic country in my later years, so I can have a longer winter… Or not.

This year is an anomaly in my long career. Experts decry the low numbers of employment in the Autistic population, but it feels to me like I’ve been missing out. If only I were underemployed. Sheesh. 😉  I know, I know. I need to be careful what I ask for, but I’m seriously tired. I’ve been continuously employed since 1988 — nearly 30 years, now — and with just a few breaks in between — a week to regroup from a layoff in 1993, and another 10 days to move across the country in 1995 — I’ve been showing up to work religiously for three decades, now.

With just the all-too-short weekends to let me modestly recharge, till I had to go back at it on Monday mornings.

But this year is different. I’m now working for a company that has a free week off between Christmas and New Year’s each year. If that isn’t an antidote to all the corporate B.S., I don’t know what is. Plus, it’s free for everyone — it doesn’t tap into my vacation time or require a dock in pay. It’s just there to take. And everybody’s taking it.

Which means I’ll be free for nearly 2 weeks… and I can get into my Flow State. I can clean out my study and organize myself. Heck, I might even locate the copy of Flow that I bought a few months back. That would be nice. I could read it.

Or not.

I can do what I like. Think what I like. Read what I like. Lie down and nap whenever I like. Make the most of my time, doing and thinking things I typically don’t have the time to do or think.

I might even sew something. That would be a lot of fun. I’ve got some clothes-making projects I’ve been thinking about for months, now. I could do that, too.

I can write. With more than the standard 20 minutes to collect my thoughts and get them on paper. I can focus on projects I’ve had cookin’ for quite some time. I can even finish up the Autistic Woman’s Cycle Calendar (a monthly cycle tracker that’s especially for menopausal women on the autism spectrum) that I’ve been finalizing for Auptima Press. I can do anything I like — and that means I can finalize stuff I’ve been wanting to finalize.

I can actually get some stuff done.

And that’s good.

It’s very good, indeed.

Something better this way comes

person standing on shore looking out at ocean as sun streams through break in the cloudsI’ve been thinking a lot about how much time and energy has been consumed by the drama around “To Siri With Love”.

I’ve been thinking a lot about how much time and energy women have spent over the last days and weeks and months, dealing with all of the sexual harassment bullshit that’s been going on for as long as we all can remember.

And yesterday, I came across a Twitter post that really said it all for me.

i am sad that so much good women’s writing has come out of this moment and all of it is inevitably explaining this moment—what else could we be writing if we weren’t constantly doing the labor of explicating our own professional subjugation?
i am sad that so much good women’s writing has come out of this moment and all of it is inevitably explaining this moment—what else could we be writing if we weren’t constantly doing the labor of explicating our own professional subjugation?

It’s as true for my feelings about the autistic situation, as it is for my feelings about women and our place in the world — past, present, future. It applies to a whole lot of groups — people of color, disabled, queer, all the folks who have been systematically disenfranchised and have been fighting to stay afloat for a while, now. We’re all so busy just trying to stay alive, that we have no chance to do much else.

Take Black women voters in Alabama, for example… Nobody really notices Black women, until they show up and vote the way everybody else who cares about the well-being of folks who aren’t straight, white, and a certain slice of Christian, should vote. And then, suddenly, everybody’s in love with Black women. They notice they exist.

And then the election passes, and everybody goes back to their systemic inequalities, slipping back into somnolent indifference… until the next Major Threat comes along.

It’s a tiresome cycle, and it’s perpetual. And it sucks the life out of so many of us. Basically, if we weren’t constantly dealing with all the socio-cultural assaults, the injustice, the inequalities, and so forth, how much time and energy would we have for creating and writing about other things that have to do with us living our lives to the fullest in the kind of world we want to create, rather than constantly defending ourselves against the systems that somebody else created and we are sorta kinda stuck with?

I feel the same way about the whole Siri drama. I feel like I’ve really gotten derailed, over the past week or so. I’m very happy with some of the pieces I written, and I think they will stand the test of time. They speak not only to themes in the book, but also to enduring issues that we really do need to solve as an autistic community, even as a larger human community, if we are going to move forward. Unless we fix some of this shit, we can’t ensure that everyone will live with full dignity and opportunity to experience life as fully as we can. It’s the typical socio-cultural moshpit action that gets me all stirred up and bent out of shape on a semi-regular basis.

The problem is, the Agendas I’ve been addressing have been set by somebody else, the bar for acceptability has been set extremely low, and the stakes feel very high.

It’s addicting. It truly is. Going on Twitter to see what else people have said, looking for how people are responding, coming through the news, reading blogs, even occasionally going over to Facebook – which I tend to avoid like the plague – it all perks me up and gets me out of my low-level malaise that seems to be the flavor of the year.

But addiction is not how I want to spend my life. In fact, much of my life has really been marred by addiction coming from all directions, including from within. I deal with my demons on a regular basis, and I know how easy it is for me to get drawn into cycles of upheaval followed by pain management, and I know how susceptible I am to the buzz that comes from active social media.

So, I have to be careful. And every now and then, I need to step away. It’s healthy. It feeds the sides of me that get lost in the online shuffle. And it helps my system regulate back to where I am behaving like myself again, instead of just being a series of reactions to everything else that’s happening around me.

Honestly, that’s what I want most: To be myself, in my own way, rather than just being a composite of reactions to others. The great irony is, those others probably don’t even realize I’m there, in the course of their own internal dramas. Everybody’s got their dance to dance, without exception. So, the task of living in constant relation to everybody else’s self-absorbed gyrations (which may not make any sense to anybody else outside their head, including me) is a fool’s errand.

Unfortunately, I fall for playing fool far too often.

That being said, when I look around me at the world we inhabit, replete with its misunderstandings about autism, and human experience in general, I ask myself, How can this change? Certainly, it changes when we take oppressive and exploitive elements to task, and we oppose their proliferation. We can’t just let people get away with crap without saying something. On the other hand, we also need to add in positive influences as a kind of cultural ballast to give our community more to work with than just accusations that Those people did things all wrong all over again.

That’s the space where I want to be. I want to be in a positive frame of mind, in a position of creating new alternatives, not just taking the old, tired ways to task. I don’t want to be a freaking gatekeeper for other people’s sensibilities. I’ve got my own since abilities, and getting dragged down to their level is just so depressing. Plus, it’s boring. Seriously it’s incredibly . mind-numbingly . boring. Where’s the joy? Where’s the excitement? Where’s the future? There’s not a whole lot of it that I’m seeing in the old, worn, outdated attitudes about autistic people and how we function in the world.

When I look around me, I see a lot of signs of hope. Employers are making more of an effort to make room for autistic people. Our community is picking up speed, beginning to thrive, and the amount of writing by actually autistic people is increasing exponentially. Things genuinely are shifting in our favor, however slowly, and every day it seems like there are new glimmers of hope in our prospects for the future. No substantive change happens overnight, of course, and the changes that we do make have to be supported and furthered in ways that will make them more than just a passing fad. But, compared to how things were 20 years ago when I first realized I was on the spectrum, things are so much better now. And they’re better because we are paying attention to the stuff that needs to change and we’re getting allies who are actually capable of stepping up and helping us steer our collective ship any better and more positive direction.

So, while the critic in me practically salivates at the idea of working my way through offending research papers and books and memoirs and picking them apart to show how very Wrong they are, there’s a bigger part of me that wants to just ditch all that crap, leave the critiquing to others who have the time and energy for it, and set out in a whole new direction. I don’t want to get stuck in the middle of other people’s lousy inventions, their shoddy thinking, their lazy philosophies, handing over their whole minds to purported experts who have a ton of funding to spread half truths and outright lies about people like me. I want to live my own truth, and demonstrate very clearly that there’s a whole lot more to being autistic than just a collection of behaviors. The autistic experience is humanity-times-1,000, and with the depth and breath of our intensities, there’s a whole lot to be learned about what it means to be autistic — and what it means to be human.

Our neurology amplifies everything. It magnifies and emphasizes stuff that most non-autistic people would never even notice. And it also numbs us to what other people are very sensitive to. It’s fascinating, and why wouldn’t I want to dwell in that fascination, as opposed to getting dragged down into the intellectual malaise of people who haven’t figured out how to think for themselves?

Why indeed?

That being said, it’s time for me to wander off and go think about something interesting for a while, hone my thought process, and see what coolness I can come up with. Autism is amazing. It’s excellent. And it can be a hugely challenging gift. But when I rise to the challenge and work with things as they are, some pretty cool shit happens.

Let’s talk about that, shall we…?

Without #TheoryOfMind, #ToSiriWithLove wouldn’t be the dumpster fire it is

picture of screaming man kneeling with blindfold on and barbed wire wrapped around his body - theory of mind is meaningless and causes pain to autistic people
Haven’t autistic people suffered from the “Theory of Mind” hypothesis long enough?

I’ve been thinking a lot about this infamous “Siri” book, lately, and while some people are absolutely horrified by the author’s attitude about her son, there’s something deeper and larger that really bothers me about this book. In fact, I think without this element, the book – and the attitudes of the author, which give the book its overarching tone – might not even exist.

That factor is the influence of the “Theory of Mind” (ToM) hypothesis, popularized and commercialized by Simon Baron-Cohen. The ToM hypothesis posits that autistic people lack “the ability to attribute mental states – beliefs, intents, desires, pretending, knowledge, etc. – to oneself, and to others, and to understand that others have beliefs, desires, intentions, and perspectives that are different from one’s own” (thank you, Wikipedia)

There is some great thinking around why this theory is wrong, so wrong, and the implications of it, so I won’t go into all of it. See Sharing: Clinically Significant Disturbance: On Theorists Who Theorize Theory of Mind | Yergeau | Disability Studies Quarterly,  Theory of Mind, my Ass,  and We can stop suffering from Theory of Mind, Now. Study reports: Interaction Takes Two: Typical Adults Exhibit Mind-Blindness Towards Those on Autism Spectrum on this blog for more of my writing about it.

I think it’s fair to say that “Theory of Mind” started wreaking its havoc years ago, and considering how anti-autistic thinking has really evolved and dug in just over the last 10 years, or so, I would say that it has experienced something of a philosophical triumph. Woe betide any who challenge it. In fact, if you do challenge it (as an autistic person), it’s easy enough to refute you by saying you lack ToM, yourself, so how could you understand something you’re too deficient to grasp?

It’s the ultimate intellectual castle surrounded by a moat. Just toss ToM out there, pull up the conceptual drawbridge, and you’re safe from all the marauding hordes of those developmentally disabled types.

Theory of Mind definitely dominates the mind-share space in mainstream autism thinking (and I use the term “thinking” with reservation). And nowhere is that more evident than in “To Siri With Love”. I mean, Siri-ously (sorry!), it’s just so pernicious and pervasive, and the author repeats its tenets so often, that it’s pretty clearly a foundational subtext that colors the entire discussion of Gus and his life.

The author says in the Introduction,

…every person with ASD I’ve ever met has some deficit in his “theory of mind.” Theory of mind is the ability to understand, first, that we have wishes and desireds and a way of looking at the world — i.e., self-awareness. But then, on top of that, it’s knowing that other people have wishes and desires and a worldview that differs from yours.

Groan. “Every person” she’s ever met… Maybe she needs to get out more… The worst thing is, she keeps referencing ToM throughout the book. Whether it’s explicit references to ToM or the underlying tone that belief in alleged “mind blindness” makes possible, the blight of Theory of Mind is like an invasive species that’s reached its grasping tentacles it to a whole underground network of healthy roots and is gradually choking out the chance of any alternative concepts.

I’m not sure she could have written the book she did, had she not been taught that her son is severely deficient in a quality / ability that some (including Simon Baron-Cohen) believe is one of the hallmarks of humanity itself. Clearly, someone got to her and convinced her that Gus has an insurmountable deficit. And there we have it. End of story. Until somebody can find the gold in it and make a decent buck off the whole “hilarious” catastrophe.

What I really hope to point out in this little essay, is that while challenging the author on her choice of words as well as her outlook is certainly one way to approach this situation, and taking the publisher to task is absolutely necessary, let’s not forget who is actually responsible for this dumpster fire. That would be Simon Baron-Cohen, along with the publishers who put out his work about ToM, and all the other people who seized on that half-baked concept, popularized it, capitalized on it, and built a veritable canon around that really shitty example of bad science.

The ToM hypothesis is so pervasive, so subtly intrusive, that even autistic people buy it. I had spirited exchange with an autistic man about a week ago about how theory of mind is not good for anyone. He didn’t buy it. It was very invested in the explanation, which he seem to think exonerated him from culpability for his autistic challenges and made it possible for him to understand himself better. Yes, it’s important that we find ways of understanding ourselves and our relative limitations… and we often do that with that hypotheses, theories. They can be extremely helpful to the autistic mind. We look for patterns. That’s what we do. And having a shorthand explanation that encapsulates a complex bunch of issues into the straightforward explanation is very helpful in a number of ways.

But when the concepts that we are seizing on are fundamentally flawed, are based on not only bad science but really shoddy interpretations of the data, and they’re derogatory and dehumanizing – which Theory of Mind is – then, Houston, we have a problem.

All this being said, I would love to see some of the outrage channeled towards the root causes. Taking one author to task, only solves one set of problems. Taking the publisher to task will not solve anything, since publishers often consider themselves bold “truth tellers” in the face of ideological tyranny. Until we fully address and debunk the debilitating Theory of Mind hypothesis, shit like this is going to continue to happen. We will continue to see books like this. We will continue to see parents having these kind of dismissive, diminutive attitudes about their autistic children. We will continue to see therapists using pain and coercion to manufacture so-called “normal” kids who have been supposedly “lost” to a condition or disorder which has taken them hostage. We will continue to see our voices marginalized and derided and completely overlooked, because we will not be fully human. Our minds will not be considered fully formed. Our future will continue to be constrained by imaginations of people who are far too willing and eager to take experts at their word and line up behind that ideological Trojan horse.

As long as Theory of Mind is allowed to stand without challenge, as long as we fail to assign the proper responsibility for mindsets like Judith Newman‘s, as long as we pick battles at downstream points, we will continue to see these issues cropping up, time and again.

And until Simon Baron-Cohen retracts his hypothesis about Theory of Mind and takes full responsibility for the harm it has done to countless autistic individuals, no amount of boycotting, no amount of tweeting, no amount of Amazon reviews is going to stem the tide of material like this.

So, while I have serious problems with how Newman thinks about her son and talks about him in public, and while I do have only the deepest disdain for a publishing company that didn’t even bother to fact check or tone check one of their pet projects, I think the problem lies deeper. And as long as we continue to spend our energy on skirmishes, will be losing the chance to win the larger battle.

As much as I hate all the warfare metaphors, as much as I object to talking about this in terms of battles, we do have a serious conflict on our hands. And there are people being hurt, even killed, because of it. I, for one, can’t just sit idly by, while all this is happening. Nor can I content myself with the fact that a lot of people are learning about just what a troubling book “To Siri With Love” actually says. These are all signs of progress, these are all indicators that something, however small, maybe changing in our favor. But in the grand scheme of things, we have a long way to go before we are seen as fully human, and fully capable of complex thought, let alone agency in our own lives. We have Theory of Mind to thank for that, and until weed out that pernicious influence, we’re going to be fighting the same battles, squabbling in the same skirmishes, for the foreseeable future.

I’m tired.

Let’s fix this shit.


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