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.

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Picking and choosing and getting my priorities straight

dandelion with dried seeds
Oh, this is ridiculous.

What do you do, when your boss doesn’t have a strong personality, they have a lot of political conflicts, and they don’t handle criticism very well? And other people like to “pile on them” with criticisms and complaints, which they lose their sh*t over?

You end up like me.

And you definitely don’t want to be me, right now.

The stuff that’s imploding around me has been blown out of proportion by people who are all jockeying for position in a shifting, re-organizing company. Everybody’s jockeying for position, striking a pose, and up in their heads about every damn’ thing.

It’s a terrible time to be empathic.

Good thing I’m working from home, today.

You know, this job really wasn’t a good idea for me to take. I mean, it has helped me in a lot of ways, but it’s also taken a toll. My boss is a big part of it, as well as my alexithymia. It’s incredibly difficult to gauge how you’re really doing, if you can’t read other people or your own internal state. And when your boss keeps you at arm’s length for a year or two and won’t cut you in on basic information about how things work, it’s even more of a pain in the ass.

I know I shouldn’t get worked up over all this. I’m probably blowing things out of proportion, myself. And I’m in a position where I could literally take six months off and not have (too much) financial trouble. I could literally leave today and have the spring to myself.

Or, I can hang in there for another 8 weeks till I get my bonus payout, and then… sayonara! Yeah, I’ll stick around for another couple of months, collect my biweekly paycheck, and actively look for another job. Then, probably whether I have something lined up or not, I’ll make my exit. This is seriously not going to work for me. Seriously.

In the meantime, I guess I’d better get to work… This sh*t isn’t going to solve itself. And I don’t want to leave it hanging. I do have some standards left…

I just have to find a way to quit perseverating about the stuff I screwed up, and just strap in for the next little while. Turn off my head. Focus on some other interests. Screw it. Let it go. Quit worrying about it. Just live.

And get on with my life beyond this dumpster fire of an employer I’m stuck with.

Are we there yet?

snow landscape with animal tracks Oh . my . god .

Nothing like a little implosion to start off the week right.

My job has basically turned into a sh*t-show, with a major project I’m managing turning out to be a “dog”. Now, mind you, I was ordered to implement this project by people outside my organization who made a deal with a vendor, and then expected us all to shoehorn the technology into place.

If that means nothing to you, think of it like somebody from the rich part of town showing up in poor neighborhoods and commanding everyone to shop only at an expensive “artisanal” grocer, because that’s the Right Thing To Do. No – scratch that. It’s like being an hourly wage-earner whose employer tells them that they can only shop at the company store, which has jacked-up prices.

Yeah, that’s more like it.

The only problem (for them) is, I have some power and influence in the situation, and when I saw the whole thing wasn’t working yesterday, I pulled the plug on it. No hesitation. Just yanked it. From production. Don’t care. Supposedly, it wasn’t my call, but I friggin’ did it, anyway.

I’m sure people are going to flip out over it, and who knows(?) I might even get fired, but I really don’t ^$ care. The “enhancement” that they ordered us to use broke something that was working for us just fine. For years. And people who couldn’t do their jobs anymore had a fit. So, I pulled it out. We’re going back to the drawing board in a number of respects.

Because people didn’t think things through. One of the big reasons for that is that everybody is so incredibly distracted, they can’t maintain a continuous thought for more than 30 seconds. Every . single . meeting . I go to in person has people sitting around the conference table with their laptops open, emailing and texting other people while the meeting is going on. It’s maddening. Every . single . conference . call . I’m on is populated by people multitasking with chat sessions happening while they’re talking. They even say (out loud) that they are distracted by chats coming in. That just pisses me off. People just drop off calls for 20 minutes to go do something else, then they come back later… completely unapologetic for having been away when we needed them there. Here, I’m working hard to pay attention to what’s going on, absolutely hating and struggling with having to be on the phone, and others aren’t even mentally (or physically) present.

It’s ridiculous. I’ve got five times the workload of other people I’m working with, and I get no support from my peers, or management. My boss tends to avoid me, and he hoards information, doling it out like rewards, instead of the proverbial bread-and-butter of getting stuff done.

So, this is what happens.

Of course, I’m not blameless in this. There were a number of things I missed. I played a big part in the screw-up. At the same time, I’m just one person doing the job of a team that used to have three people on it, and this is just one of my projects. Yeah, I have my limits. I’m so caught up in bouncing from one trash fire to another, there’s no time to step back, take a look from a bigger perspective, and actually plan. Everybody’s in reaction mode, including me, and I hate it.

Especially when my alexithymia kicks in , and I literally can’t tell whether I’m doing a good job, or not. Maybe I’m doing great, maybe I’m not. I have no way to tell, because I can’t read others, and I can’t tell what’s going on with me. I’m too busy scrambling to keep up, to get a clear view, anyway.

It’s incredibly frustrating and anxiety-producing… if I stop to think about it.

So, I don’t. I keep myself busy. I do other things.

I make stuff up in my mind about what I’ll think about what’s going on. I decide intentionally to keep an attitude of positive proactiveness and hold my sh*t together. It nauseates me, and I feel like crap the whole time, but it seems to work okay around other people. Somebody called me a “genius”, this morning, for backing out the changes we made. So, at least one person approves. I think I’ll put that on my LinkedIn profile, since it’s probably best that I start looking for another job.

So… whatever. I’ll go into work and deal with this crap today. I’ll drag my sorry ass through the muck that other people created, and I’ll go for a swim this afternoon, if I get a chance. I’m incredibly pissed off at a lot of people for pushing and pulling me in all different directions behind the scenes, while “making nice” to each other in person. I’m incredibly pissed off at myself for letting it get to this point. And I’m incredibly pissed off at people who refused to help, when I reached out and asked… and then pitched a holy fit, when things turned out the way I warned them, to begin with.

I’ve really had it with a lot of these people.

On the bright side, there are other jobs to be had. I need to start looking around. And I am.

So, What’s #Menopause and What’s #Autism?

spectrum spiralThat was the operative question for me about 10 years ago. Or rather, it should have been the operative question, but I was so overwhelmed with my life and my body’s changes, that I couldn’t think clearly about being Autistic.

I actually couldn’t think clearly about being Autistic for years prior to that, because, well, being Autistic and not having a definitive diagnosis (self-DXed or otherwise), and not having any sort of support or community to turn to, there was little to no opportunity/chance for me to cogently suss it all out in my head.

Things were just a big ol’ mess, and that was that.

My job situation was tenuous, and I was moving from position to position, from company to company, without anyone really realizing what was going on. In hindsight, I can tell you:

I was moving from job to job, because I couldn’t track what was going on around me. I was overwhelmed from the changes in my monthly cycle, which were also accompanied by dramatic changes in my hormonal levels and behavior and thinking process(es), and I was in constant dread of being found out — that someone would figure out that I was a screw-up who didn’t know what was going on, and they’d just get rid of me. I had to keep some semblance of “control” in my professional life, so that meant moving around a fair amount.

I mean, it was rough. And the thing that made it the roughest, was not having adequate cluefulness about Autism and how it affected me. I am 100% convinced that I could have managed my situation, if I’d had adequate knowledge about Autism, as well as menopause.  I am proactive. I’m a planner. I come up with structures and systems that assist me. I build tools, I leverage assistive technologies (even ones that aren’t build with that intention), and I am highly scientific about how I live my life.

So, if I’d had reliable info about A) Autism and B) Menopause, I am 100% certain I could have handled it all extremely well.

And I’m just as convinced that other women can, too.

Of course, all this is … fraught.

One of the hazards of talking frankly about (peri)menopausal Autistic women, is that to the untrained eye, it can make us look extremely debilitated. That’s no good for our careers, for our social lives, for our prospects in the mainstream — where, like it or not, a lot of us need to function. Plus, when people hear about our difficulties and how much menopause really f*cks with us, they can automatically jump to the “oh you poor dear” victim mentality, where we’re supposed to be coddled and care for and given special consideration.

Screw that. Given half a chance, I can really do an exemplary job of living well — and I do. On a regular basis. A lot of us do. So, treating me/us like poor hothouse flowers who need to be sheltered and given special dispensation just works against us.

I’m not saying we don’t need consideration. We do. But don’t turn us into helpless victims, simply because we’re going through what millions upon millions of other women (Autistic and otherwise) have successfully gone through for millennia before us.

We need to talk frankly about it. We need to discuss. I might just be that we can’t do it freely in public. Some well-meaning person may pick up on what we’re talking about and — god forbid — institute some policy around it.

Well, enough of that rant. It’s Monday, and I’m ramping up… I don’t want to get distracted. Okay, where was I?

Ah, yes — figuring out whether the drama in your life is Autism or Menopause…

As I discussed earlier (#Autism and #Menopause… Like we don’t have enough problems already!) , we’ve got a bunch of overlaps between the two situations — one of them permanent, one of them temporary:

hypersensitivity (including achy joints and sensitivity to noise, temperature and pain), muscle aches, foggy thinking, forgetfulness and other executive function challenges, trouble sleeping, difficulty with temperature regulation, seizures, migraines, irritability, depression, anxiety

Additionally, we can have additional health issues, like EDS and fibromyalgia and epilepsy, mental health issues, and injuries that can make our lives that much more… interesting and eventful. And then there’s life. Menopause comes along at a time in our lives when we’ve got increased responsibilities: our professional lives can be packed full of responsibility, our personal lives can be in upheaval, we can have a bunch of dependents to provide for (growing kids and aging parents at the same time), and much of what we handle, we have to handle alone, because other people say we’re so good at it, so that qualifies us to be the subject matter experts and take full control/responsibility for those things.

It seems pretty much like a setup to me.

And when you add Autism to the mix, oh yeah — that’s even better. Because we’re already hypersensitive as Autistic women (or men who are have menopausal women in their lives). We’re already achey and sleep-deprived and anxious and everything else listed above (and more). But then life comes along and tosses the menopausal firecracker into our well-ordered lives, and kaflooey! Instant drama.

I’m not one to dwell on constant problems. If I were, I would have ended my life long ago (it’s true). I’m all for solutions — and the one solution I found is really the most basic one of all: education and proactive management of my situation. Using tools. Writing things down. Keeping close tabs on the ways that my life is screwy (and yes, it is in many ways) and doing something to unscrew it. Focusing on the places where things fall apart for me, and coming up with ways to keep them together, in spite of forces beyond my control.

I’ve gotten lectures from other people about how I shouldn’t use a “disability model” when I think about being Autistic. I should focus on differences and reframe my limitations as just variations in the human theme. Philosophically, I totally agree. But logistically, that just doesn’t work for me. I really do have problems associated with Autism, and to tell the truth, the very thing that saves my a** in all of it, is “getting ahead of it” and coming up with ways to address or augment my issues — because I durned well know I’m gonna have those issues… or I already have them, and they’re making my life extremely difficult.

I’ve got to get read for work, now, but I’m going to share some of my most helpful tips, tricks, and techniques on this blog. Seriously, people, menopause happens to so all of us — both directly and indirectly. And it’s especially impactful for Autistic folks. Forewarned is forearmed, so we need to gird ourselves and get properly equipped to deal with it.

That means… information. Facts. Scientific research. Just knowing what’s going on with us, and what we can expect. Without that knowledge, we’re sunk.

And we also need tools.

So, I’ll leave you for now and come back around later when I’ve got more to share. I’m ambivalent about this Monday. No, scratch that, I really don’t want to “do” this Monday. At all. I have a long list of pain in the ass people I have to deal with… But I’m delaying the inevitable. Off I go… wading into the fray.

More to come later. Much more.

Oh, how I would love to talk about ideas…

sunrise behind clouds over the oceanSo, this trip has been interesting. I have 11 hours to go (and yes, I am counting), till I get to leave the office, get in my car, and drive to the airport. Then, I’ll have yet another bite to eat, board the plane, and fly home.

I can’t wait. I’m done here. I was supposed to have dinner with an Aspie friend, last night, but I ended up having to do a work team-building thing — going out to dinner with my coworkers, and then having ice cream afterwards. It was a good time, and I enjoyed hanging out with them. Just like I’ve enjoyed spending time with other folks, discussing work and other subjects, and everything that goes along with networking for work.

Sure, I enjoy spending time with these people, but when do I get time to decompress? All this peopling has been incredibly taxing. It’s exhausting, no matter how much I enjoy it. There’s too much to take in, too much to process, and all of it’s happening in an environment that’s inherently hostile to me and my sensibilities on a profound level. Everything around me is too too loud, too bright, too frenetic, too superficial, too political, too… everything.

And not an in-depth idea in sight, from what I can tell.

I’ve spent the last four days skimming the surface of life, and it’s about as much as I’m prepared to indulge. Everybody’s saying I should stay longer. I should spend more time. I should even move out here. They like me. I like them. We get along. There’s a fair amount of love between me and my coworkers here, and they enjoy working with me.

But it’s a one-way street, social and mentally speaking. I’m the one working overtime to fit in and adapt to their ways. I’m the one putting out the effort to blend and be a responsible individual who cultivates positive social interactions. I’m the one who’s bending over backwards (metaphorically) and putting a cramp in my back (literally) to adapt to their schedules, their food choices, their priorities, their values.

Very, very little of what goes on here and what people care about appeals to me. Living a classic American conspicuous hyper-consumer lifestyle in ways that support and further the dominant paradigm (as well as  the economy), and structuring your life around your popularity, social standing, and political connections are about as far from my main priorities, and you can get.

It’s just so vacuous… I feel like I’ve been living at an extremely high altitude for the past week, with very little oxygen, no trees, and no signs of diverse life to be found.

And nobody around me seems to notice, which worries me.

I mean, I like the people I work with. But at some point, I need to talk about more than office politics, as well as their mainstream lives. I need to discuss more than what people had for dinner the night before, or what the school schedules are. I’m out of  place, but I’m the only one who notices, because I follow other people’s leads, and I play to their strengths. It’s much easier to interact with people, when I make them the center of attention. They love it. They love to talk about their lives, their cars, their kids, their hobbies. But very, very little of it has anything to do with queer little ole me.

Which is pretty much the story of my life. Not much around me has anything to do with me or my values, my priorities, my interests. Never mind what I would have talked about, if I’d been able to go to dinner with my friend last night. We would have riffed on abstract concepts for hours. But alas… alack… All I have to show for dinner last night is a dessicated, intellectually barren experience, where I’ve worn myself out interacting with people nothing like me at all, doing things that don’t interest me… and there’s always the chance I’ve insulted someone without intending to.

Ah, well.

I get to go home today. Back to my books, back to my routine, back to my regular eating and exercise schedule. Back to my house, my partner, my queerness, my nonbinary, noncompliant ways, and the life that I’ve structured exactly the way I want it. Back to my quiet, my peace, my steady cadence. Back to my ideas. Back to a place where I can actually think, instead of being rushed and pushed and cajoled and coerced into meeting someone else’s cookie-cutter social needs, on someone else’s time, according to someone else’s idea about how things should be done.

Well, I’m sure I’ll get some insight from this trip, on down the line, but for now, I’m just really relieved to be finishing up my stay here and going home this afternoon. I’m sure I’ll be back here, sometime in the not-so-distant future, but for now, I’m looking forward to getting my life back to how I want and need it to be.

The day is starting. Let the games begin. Again. For the time being.

Because this #postmenopausal #ActuallyAutistic #woman knows better

sun shining through tree branches
If there’s one thing this trip is teaching me, it’s that I know better than I’ve been giving myself credit for. I know more. I am more capable. I am better equipped. I am better prepared. I haven’t been expecting much of myself, but I realize now that I can expect much, much more than I’ve been allowing for.

And it occurs to me that, once again, alexithymia is getting the better of me. It’s just too bizarre, how it happens… and how convinced I am that I am beyond hope, beyond hopeless… absolutely positive that I can’t deal with sh*t… when all that’s really going on, is that I have no internal sense of confidence, no internal sense of capability, no internal sense of mastery. It’s just not there. Like all the times I have no internal sense of being happy, sad, upset, mourning, elated, frustrated… pick an emotion of your choice. So, so many times, I just can’t feel it.

At all.

And that throws me off. Very much so.

But what does this have to do with menopause? Ha! Everything.

Because the lower hormonal levels in my system seem to heighten my lack of feeling for… stuff. It’s harder for me to detect what I’m feeling, these days, than when I was 10 years younger and I was feeling every damn’ thing so intensely. Going through menopause both dialed up my experience of physical and emotional sensations — way up — to where they kind of spiked… only to be followed by a veritable trough of emotion in the years after…. an extended experience of meh-ness that dulled and confused my emotional detection even more.

And ironically, even when I’m in a really good place — a place of mastery, a place of expertise — I can’t sense it, so it doesn’t feel real. It doesn’t feel genuine. And that messes with my head. ‘Cause obvious things like knowing what you’re talking about is supposed to give you a palpable feeling of rightness… right?

Alas and alack, it doesn’t work that way with me. And that messes with my head.

So, I have to fall back on logic. And remind myself factually of the details of my expertise — that I’ve been doing what I do for decades. That I’ve paid my dues. That I’m a trusted subject matter expert. That I have good “street cred” with the right people at work. And so on.

I have to rely on logic. Because my meh-nopausal system can’t be bothered to work up the energy to sense all those things and sort through them.

Fortunately, I have logic. It’s logically impossible that I would do as much as I’ve done in my life, and still have no clue about anything. Even though it feels that way — or at least, very much like a void — even though I can’t detect any sensation of expertise… I know objectively it must be there. And I also have friends and colleagues who can (and do) offer feedback that I cue in on and then process. They’re much nicer to me, than I am to myself, so I take their word for it, when they tell me I’m smart, or they tell me how much they value my opinion.

So, I override my sense of doom and unremitting failure, and just get on with my life. I really wish it weren’t this way, but is… so there we are.

The Upsides of #Alexithymia

tree by lake with moon and stars overhead

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

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

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

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

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

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

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

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

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

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

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

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

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


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“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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Tonal issues with #ToSiriWithLove

Gus was six when finally a kindly neuropsychologist told us Gus was "on the spectrum." I don't remember much about that day. I do remember that John — gruff, stalwart, very British — climbed into bed with Gus that night and sobbed. Okay, so I’m wading through “To Siri With Love” by Judith Newman, and after a couple of days of intent reading, I took a break just to restore some order to my life.

And to get some perspective. It’s easy to get caught up in the brouhaha / kerfuffle about this book, just by reading all the tweets. It’s easy to have my judgement be clouded by raw emotion.

My alexithymia is a double-edged sword — on the one hand, it lets me wade through really problematic works without getting derailed by an immediate emotional reaction. Then again, the delay in sorting out just what emotional impact things have on me has the “downstream effect” of loading me up with recurring WTF?! flashbacky-like things that get distracting and intrusive and make it hard to sustain concentration on what’s right in front of me.

So, yesterday, I needed to take an alexithymia catch-up break and let myself just digest everything.

There are so many things about this book that are, well, diagnostic of mainstream society’s cluelessness about autism. The impact ranges from irritating to problematic to pernicious. And this book, in my estimation, doesn’t help matters any.

There’s a generally flippant tone to the book, which strikes me as disrespectful of others in the way consistent with the direction that mainstream media has taken over the past 10 years. For some reason, being obnoxious and callous is viewed as a character strength, as though you’re being bold and edgy with intentional assholery. I see this on television more and more — people (for some reason, particularly women — like the lead character in “American Housewife”) being loud and rude, and then being praised for being “real”.

Oh, that’s real, all right — real annoying. And, in the context of my upbringing with people who may not have been perfect, but had standards of behavior… that sort of writing is real unfit for polite society.

To whit – take the passage above.

And of course he got kicked out of the school for learning disabled kids. He wasn’t on drugs like they were. (I am not at all antidrug. I was just antidrug for inattention in a child barely out of nursery school.)

Gus was six when finally a kindly neuropsychologist told us Gus was “on the spectrum.” I don’t remember much about that day. I do remember that John — gruff, stalwart, very British — climbed into bed with Gus that night and sobbed.

In the ensuing months there were many tears for me, too, particularly around neuropsychological testing and schools. Neuropsych tests measure your child’s overall cognitive ability, as well as his areas of strength and weaknesses. When I tell friends I refused to look at the results…

“… He wasn’t on drugs like they [learning disabled kids] were.”

There are a lot of different ways to say something like this. The author could have said, “He wasn’t medicated to ensure his behavior was within their acceptable range.” She could have said, “The rest of his classmates were compliant, as a result of their meds.” Either of those two choices get the point across, but the author chose instead to say the other kids were “on drugs”, which has a whole lotta baggage that goes along with it. Nothing like doing a little borderline character assassination on 4-year-olds. And learning disabled ones, at that.

Classy. (not)

If I were a parent of a kid who had learning difficulties and/or was “on drugs”, I’d really pause at this sentence. It just doesn’t put them in a good light, and the parents would naturally be implicated in that allegation that their kids are drugged-up. Who knows why some children are medicated? I have reservations about how widely meds are dispensed, and under what circumstances. But I’m not going to describe 4-year-olds as “on drugs”. Technically, they may be. But there are other ways to say it, that don’t invoke the knee-jerk bias those two little words trigger.

Seriously, there is such casual misuse of language, such flippant choice of polarizing, judgmental words, that alone makes the book hard to read. I guess maybe it’s that double-empathy issue, where the neurotypical Newman can’t guess what the rest of the world is feeling, and/or just doesn’t care. Then again, the author didn’t act alone. There was a whole system behind her that made this all possible — including agents, editors and advance reviewers. Nobody picked that up? Nobody raised it as an issue? Hm.

And the reveal about her son’s autism diagnosis? She doesn’t remember much about her own experience (which surprises me), but she remembers enough to tell us about her husband’s distress.

Which paints a grim picture of the scene. Something absolutely awful  must have taken place, for her “gruff, stalwart, very British” husband to crawl into bed with his six-year-old son and sob. I was moved, myself. Then I realized what was happening, and I’m like, “Hey! What just happened? They just found out their kid’s autistic, and it’s wrecking their lives? What the actual f*ck?”

Tears in the ensuing months… cognitive tests… schools… I have no doubt that it was stressful, even traumatic, but the way it’s set up, it sounds like Autism Is To Blame(!) Autism Ruined Everything! Autism made her husband cry, and it brought her to tears, as well. There’s no talk about how the system made everything that much harder, how the diagnosticians may have been painting a grim picture of her child’s future, how at every turn, the standard-issue conception of autism was convincing these parents just how impaired their child was, and just how much help he needed.

The author goes on to describe Gus’s diagnosis as “devastating”. And if you take the system and mainstream party line about autism as gospel, well, yuh – it’s gonna be devastating. But the author doesn’t address the real issues at the core. Instead, she likens her reaction to the prospect of finding out what the real deal was with her son, with being a mouse facing it’s gruesome fate in an aquarium with a boa constrictor.

That seems to be one of the foundational issues with the book, as well as with the author’s ongoing defense(iveness) of her work. She fears the truth so profoundly, she won’t face it. This isn’t conjecture. She’s told the world. Unfortunately, the human system requires data to construct its version of reality, so in the absence of actual objective external facts, it looks within and fills in the various blanks with the tidbits of truthiness that feel right.

And then we get this book. A memoir (which lets the author off the hook for factual accuracy, because it’s a personal account) which is ostensibly devoted to autism awareness (but makes us far more aware of her ignorance and lack of understanding about autism, than the nature of her child’s neurodivergence), and sells tons of copies, hangs out on the New York Times Bestseller List for a while, and gets rave reviews by non-autistic readers, who are cheering her on during her prolonged struggle coming to terms with the blow(s) that her son’s autism struck to her otherwise bright future and family legacy.

Sigh.

So, yeah, the tone of the book bothers me a lot. It’s profoundly self-referencing in a way that highlights just how damaging it can be to be profoundly self-referencing. Not just for the autistic child she’s introducing to the world, whether he likes it or not, but for her, for her husband, for her other son, and for all the readers who think this book is just the “bees knees” and laud it as a “heartwarming” personal account that really made them appreciate just how hard it is to have a child with autism.

It’s snarky. It’s self-pitying. It’s alarmingly clueless about the experiences and emotions of others. It’s even violent (the author talks about wanting to punch someone in the face, which is a little to WWE for my tastes). It’s a little difficult to read because of the spacing and pacing — some of the paragraphs are two sentences long, and some sentences go on and on. It is funny in places, but I find that all the problems put me on edge so much, I can’t actually appreciate the humor. And many times, I’ve laughed, then stopped myself and said, “Hey… what did she really just say?”

It’s that sort of disarming … delayed… slam, that puts me off the most. Casting herself as a loving, caring mother (of course she loves her son, she says), and then describing his autism — one of the things that makes him expressly what he is — as “devastating”… it feels more than a little manipulative, and I’ve felt at times as though her sly insertion of bias, prejudice, and a sprinkling of eugenic impulse, has made me complicit in her work to build herself up by tearing her son down.

For the record, I sincerely doubt we’re going to see any sort of apology from Ms. Newman. Yom Kippur doesn’t come around again till September, 2018, so she’s got a lot of time to think about what she’s done and how it’s affected countless autistic folks and their allies, before she proffers and apology. But if she can’t even look at her son’s neuropsychological test results (which just scratch the surface of his whole being), I can’t imagine she’s going to take a close look at her own behavior, choices, and the artifacts thereof.

I’ll just have to use this book as Exhibit A in What Not To Do When You Write About Autistic People. And use it as a reference for what sort of harmful mindsets really, truly need to change for people like me to be considered full human beings with a right to a full human life.

We’ve got work to do, when it comes to claiming our autistic space and dignity in the world.

That’s for sure.


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