#Alexithymia… again

snow monkey sitting in water

It’s been a very strange bunch of weeks. I’ve been on an emotional roller-coaster for reasons that aren’t immediately clear to me. I go through my days with a combination of logical efficiency and having to fight back tears.

Take a break… find an empty conference room and compose myself… Or put on my headphones and hunker down in my cubicle till the emotion passes.

Either that, or I’m flying along without a care in the world, dealing with whatever comes up with surprising alacrity and presence of mind.

Or I’m in a numb state of overwhelm that just doesn’t add up, because my life is no more overwhelming than it’s ever been. If anything, it’s less overwhelming, because I’ve cut back on the sheer volume of stuff I do on a daily basis.

Maybe that’s it… maybe I’m feeling the loss of my intense focus and drive. Maybe I’m suffering from a lack of mental activity. I know I do feel unchallenged in my daily life, and my greatest cognitive challenges are not losing my mind in the emotionally, sensorily vacuous political atmosphere I function in, each day.

Come to think of it, I probably have a lot of good reasons to feel sad and bereft — yeah, bereft is how I feel. I can’t list all the reasons here. At the same time, I have just as many reasons to feel positively bouyant… which I do. Back and forth the emotional pendulum swings…

And all the while, I know that things are happening that I should be feeling something about. Something… But I can’t muster it. I can’t summon the sensation. It holds back, it keeps its distance. It’s just not there for the taking, whenever I need it.

Which makes me look cool, chill, sometimes even cold.

I don’t want that. So, I feign emotional responses. A lot. Based on what I see others doing. I do a lot of mirroring and mimicking, these days. And yes, it’s exhausting. Because there’s no room for someone like me who doesn’t feel something on demand, and people distrust others who aren’t like them. And I work with people who are skittish to begin with, what with all the layoffs happening and organizational drama taking place.

In some ways, alexithymia really comes in handy. It keeps me out of the pit of despair that everybody gets sucked into. But then my empathy kicks in, and I co-experience other people’s dramas, without really knowing why. I don’t sense things in the same way, with the same cadence/regularity that others. So, I have the dubious honor of sharing their emotional states without really knowing why…

And yes, it is exhausting.

So, I curl up in bed at the end of the day and weep. For whatever reason. Reasons I can’t imagine, that I can’t fathom… but which show up, days, even weeks and months on down the line.

Oh…… So, that’s why I was so upset!

Always an adventure. Always.

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What makes it worth it

two stacks of rocks beside a rushing streamHere’s my little Stoic meditation for the day…

I had a dream last night that I was cooking a meal for my extended family with my mother’s pots and pans and cooking implements, in a kitchen I wasn’t familiar with, on a gas stove that was hard for me to control, in a house I didn’t recognize. All my four siblings and their kids were there, as well as some cousins, who came in and out of the dining room, where everyone was talking and yelling and laughing in pandemonium, getting hungrier by the minute. The number of people kept changing, as people came in and out, and they were all yelling for me to come join the party.

They wanted me to cook, as well as play games, and the whole scene was joyful chaos. They were having a grand time. I was having a terrible time. I kept miscalculating the timing on how long the food should cook, I had rice on the back burner and stir-fry vegetables on the front burner, and a bunch of other side dishes in various states of preparation.

On top of it all, my mother kept coming in and out of the kitchen, correcting me about how I was doing things, offering to “help”, and generally distracting me when I was trying to sort things out.

It was a typical time with my family… and I was beside myself with anxiety, frustration, overwhelm… the works.  I wanted to cook a nice meal for everyone, to show them how much I cared for them. But they were making it impossible.

Impossible, I tell you!

I woke in a state of irritation. No surprises there. Fortunately, I got nearly 8 hours, last night, so that’s a big plus. It takes the edge off things. Eases the burn, so to speak.

So, yeah, I woke up feeling frustrated and agitated, feeling like I can’t do anything right. I’ve really been struggling with the choice to let go of a lot of my false hopes that fueled me with irrational optimism, all those years. I’ve spent so much time trying to fit myself to external requirements, that I’ve usually gotten lost in the mad shuffle. And now I find myself without so many of the things I’d hoped for… that I worked so hard for… but could never do consistently because of fatigue and confusion and overwhelm. I’ve spent so much of my life trying to offset my limitations, that I haven’t given enough time and energy and attention to my strengths.

And now where does that leave me?

I lay in bed feeling sorry for myself for a while, then I gathered myself and got out of bed. Made myself some breakfast. Did a short strength training workout. Talked to my partner. Admired the view outside. Checked the weather. And now I’m getting some time to write.

When I look around me at the life I have, it’s actually a pretty cool thing. But then I look at where I am, agewise and financially speaking, and I feel so… delayed. I’m at the age where my peers are sending their kids off to college, or their kids are finishing school, and they’re getting ready to retire. The 55-years-old early retirement option is increasingly common, and people at my job who are over 50 are more at risk for being laid off. That puts me in at or near the “skeedaddle” stage, and I just don’t know what’s going to happen to me, over the long term.

It kind of reminds me of my dream. I’m headed into new territory, with everything around me shifting and changing rapidly. I’ve put a whole lot of my heart and soul into keeping up with things and building a good life for my partner and me, but it’s been overwhelming, confusing, and the rules keep changing… all of which make life a lot more “exciting” than I’d like it to be. It’s all for the sake of everyone else, I think sometimes. It’s all for the sake of everyone except me.

So, why do I do it? Why do I bother putting myself through those paces, day after day, week after week, month after month after year after decade? Why bother?

Because it shapes me. It strengthens me. It hones me. It’s like a really hard resistance workout, seemingly without end. It’s no fun when it’s happening, but it builds me. It shapes me. It directs me. And it teaches me not to sit around and feel sorry for myself when I’m in pain and discomfort. It trains me to function, even in the face of extreme odds. It’s a masterclass in drama management, and it serves me well.

It might not fill my coffers, but it actually trains me to function really well, even without filled coffers. Learning to deal with all the passing overwhelm, the crisis, the drama, the disappointment, and one failure after another, conditions me to do well when things really get tough. And given the way the world’s been going, this is probably an extremely useful trait. It’s a helpful trait, in any case. Because things don’t always go right, and somebody’s gotta be there to keep calm and carry on. Do the things that need to be done, even when the doing is miserable, thankless, and feels like a “one-way trip” of energy.

And I think our modern world tends to lose sight of that. It seems to have lost the appreciation for the traits and qualities that are genuinely useful — replacing it with a worship of things like the ability to buy stuff and how many people “like” or recognize you online. What a strange, strange world… It makes me just want to ditch it. But that’s easier said than done, and in any case, you have to take the bad with the good. In some ways, maybe the “bad” is even more useful than the “good”, because it builds me, it shapes me, it strengthens me. And in the end, being strong and flexible and capable are really my main goals. Without them, what am I?

Not me.

I really need to get back to reading the Stoics. It’s the one thing that reliably keeps me centered and puts things in perspective. Maybe I’ll make that a daily exercise. I’ve had a number of other daily exercises, over the years, and many of them dropped off after a while. This could/should be one that replaces some of those that have disappeared.

I got away from reading them… and I should change that. So, I shall.

So, I shall.

When plans (fortunately) just don’t work out…

So, I had plans for this weekend. I have a project I’ve been wanting to finish for months, now, and I actually had 36 hours of solitude all to myself. This is rare.

Construction works in Funchal harbor

Silence. Solitude. Freedom to move around the house without concern for disrupting anyone’s sensitivities

Quelle Luxe! But yesterday I was tired. So tired. It’s hard to think creatively, let alone finish, when I’m tired. Everything fades

So, I let myself be. I did stuff. I let myself watch Galaxy Quest again. I watched some movies I normally don’t. ‘Cause… solitude.

Now it’s nearly 1 p.m. and I have less than 8 hours of solitude left, and I’m wondering what I should do… Errands? Food shop? Dunno…

I should probably do just a little on that project, just ’cause I promised myself. But days when I have free time, I realize just how much I actually do on a regular basis

and how vital my routine is to me, to get it all done. There is a ton of detail in all I undertake

And to the rest of the world, it may look like a disjointed mess. But to me, it all fits. It’s beautiful. That’s just how my mind works.

And when I have the chance to just let my mind do what it will, without being “harnessed to a plow” of some kind, it’s wonderful.

Truly.

Days off, days on

sunspot animationI just got my telescope figured out for the eclipse tomorrow. I’m in a location where we’ll have about 70% eclipse, so it’s not going to be as dramatic as in other places, but still…

Friends are coming over for the event. Actually, they’re coming home tonight after an event my partner is attending today, and they’ll be here tomorrow. I’m not happy about my routine being disrupted — it’s stressful in an already stressful point in my life — but  at least I like these two young people. They’re fun and invigorating and very open to life. I also don’t need to mask around them. I can just be me.

I’m hoping we can get a look at some sunspots. I got a telescope with a sun filter, so we can look close-up at the sun during the eclipse. I also got us some eclipse glasses from a reputable manufacturer (not all of them are), so we can take a look. I practiced setting up the telescope and pointing it at places. It’s a reflecting telescope, so things look upside-down, and to make it look right-side-up, I need to have another attachment. I should have set the whole thing up sooner, but this week has been stupidly busy, and I’ve been absolutely swamped / assailed at work.

It’s pretty bad, actually. And a lot of the beliefs and assumptions I had about the larger team and how well we were working together pretty much went out the window in the space of 24 hours.

That seems to be how everything is going, lately.  A lot of the ideas I’ve depended on have gone away… And it’s disorienting. Stressful.

I don’t like it.

Anyway, it’s a paycheck, right? And in some ways, I’m actually adjusting to how Things Are Supposed To Be Done better than before. I’m so tired. It’s hard to know what I should do, or why I should do it.

So, I sit tight, take it day by day, and eventually… eventually… things may sort themselves out.

I’m just not a fan of the dynamic, right now. Nor am I fan of working remotely with people. I have a hard time interacting with people over the phone and IM primarily. I can’t “get a read on them” and I constantly misinterpret what people are saying. I think they also misinterpret what I’m saying. It’s such a pain in the ass. And I realize that I really need to work with people on-site. Not remote. Best case for me, is to work somewhere close to home, where I am part of a live, in-person team that actually communicates with each other.

That’s really the bottom line for me. And yeah – I need to not keep bending myself out of shape to adjust to this job. Why should I? They should adjust to me, not the other way around. So, I’ve updated my resume, and I’m going to start putting out feelers for other positions. If it happens sooner than later, I’m fine with that. I’ve been looking forward to my extra vacation time coming up, but is it really worth it, if all my time off is spent recovering from the daily dramas, and I still feel like crap, the whole time I’m “off work”?

That makes no sense. I’ve been uncomfortable in this job, practically since the start, and I’m tired of bending myself into pretzel-like configurations to make it work.

Why should I have to make it work?

Why can’t I work at a place that already works for me?

Anyway, that’s where I stand, right about now. (Though technically, I’m sitting down.) I’ve had it. And I’m tired of thinking that it’s my fault that things aren’t as lovely and delightful as they’ve been for me in the past. I’m tired of blaming myself for not being all enthused about how things have gone. And I’m tired of feeling responsible for fixing things that other people break.

So, I’m pretty much done.

I had a quick burst of excitement about my job, lately, but it’s rapidly soured.

What’s next?

What would make #Atypical discussions even better…

… is if the producers and everyone lauding the show would incorporate a little humility into their public discussion.

megaphones facing in different directions
It feels like people are all just talking over each other.

It feels like everyone is yelling at each other over the show Atypical, and people are predictably falling into fight-flight mode, which doesn’t help our ability to parse nuance… at all. A lot of people are trying to make their points, and in the process, they’re doing it in a way that literally shuts down the other side and makes it impossible for others to hear them.

I’m not tone policing. Not even close. I’m just giving folks a heads-up that our bodies may be preventing our minds from engaging properly. This is simple biochemistry — the mechanics of our autonomic nervous system (the sympathetic side of it), which does what ever it damn’ well pleases, regardless of what we want it to. It’s very simple, actually. We get worked up, and we can’t handle nuance, variation, higher reasoning.

Anyway, I think a simple statement from the creators and producers of the show would help immensely.

Here’s my suggestion for a statement from them:

In Atypical, We’ve done our best to portray an autistic character as realistically as possible, but of course autism is a broad spectrum and people’s traits can be changeable from one situation to the next. So we’re going to have Sam evolve as a person — as an autistic person — and we’re going to also show how this affects his family.

Parents and siblings of autistic kids are often isolated and alienated from their peers, which means they don’t get a lot of the support and acceptance that many families just take for granted. We want to tell a story they can relate to, so they don’t feel so alone. We also want to portray autism in a way that helps explain it better to them, because even though they have lived with an autistic member of their family, unless you are autistic, it’s very difficult to understand the experience in all its complexity.

We also know we have a lot to learn about autism, ourselves, and some of the assumptions we started with are probably going to be wrong (maybe completely wrong) as we ourselves evolve, so bear with us as we work through the issues. We apologize in advance for any ‘ham-handed’ treatment you may see. Our intention is to do good, not perpetuate the stereotypes and harmful generalizations which keep autistic individuals from being understood and accepted. And by all means, we invite input from our audience — especially our autistic viewers, who have been misrepresented and dismissed in society for so many years.

Autism affects us all — even a lot of people who don’t realize it. And like any complex situation which involves individuals, family, school, work, and our broader communities, it can be quite a ‘minefield’ of misunderstanding and misrepresentation. We don’t want to add yet more explosives to this already tricky terrain. We’re human, and we know we’ll make mistakes along the way. We just hope our audience will remember that and help us correct our course, as we proceed. It’s our hope that Atypical will become a lasting contribution to the public discussion about autism, and that we will not only teach about how autism affects the whole family, but also learn more as we go.

There. That would fix a lot of the distress about Atypical, I think. Just a simple statement to that fact — humility in action. Love in action. And good PR.

If anybody on the Atypical PR team wants to use this — or a form of it — feel free. I just want us all to start talking to each other like human beings (not partisan opponents) who have a vested interest in each other’s health and well-being… and are willing to show it.

Oh, and truth. A vested interest in truth would be awesome! 😀

One of the unexpected ways that knowing I’m autistic has helped me…

door hanging in mid-air beside a dried up dead tree
It all seems so surreal, sometimes…

… is resetting my expectations for what I’m actually capable of doing.

For years I have acted as though I am just as capable as the next neurotypical person of negotiating job terms, salary, and all sorts of different details to go along with carving your space out of the world around you.

Now, though, I realize just how impaired I am in that respect.

I don’t know how to negotiate pay properly. I don’t know how to be proactive and put on a strong showing all the time. I don’t instinctively put my best foot forward and showcase my talents and abilities just like every-NT-body else. I don’t naturally blow my own trumpet, so to speak.

The funny thing is, those are not things I actually want to be good at. They seem vaccuous and foreign to me. Like a formal dress-up suit that’s 2 sizes too small — but unless I’m “dressed” in it, I won’t be allowed into the party, so to speak.

Thus, I am inherently at a disadvantage when it comes to salary, job negotiations, advancement, career ladder climbing, the whole shooting match.

And it has dragged me down terribly for so many years.

I can’t even begin to tell you how badly I have thought of myself because I couldn’t do the things that I thought I could.

If only I had simply known, from the start, and come to terms with those things…

If only I’d realized  I’m at a real disadvantage…

If I had simply realized just how foreign that whole world is to me, and that no amount of practicing and no amount of pep-talk and no amount of motivation is going to get me to gravitate to those patterns of behavior…

I could’ve just saved myself a whole lot of time and hassle. I could’ve saved myself the anguish of dealing with those job changes that were supposed to lift me up in the world, but just ended up a repeat performance of my impairments, albeit in a slightly different way.

I could’ve spared myself all of those goddamn interviews, all the fucking screenings, all the pathetic excuses for bids for advancement that I embarked on over the years.

I could’ve saved myself the hassle of updating my damn’ resume every other year and talking to recruiters – on the fucking phone – about crap positions they wanted to sell me.

I could’ve spared myself all of those lousy miserable sessions talking to smooth-talking head hunters who did a fantastic job of talking circles around me.

I could’ve saved myself the pain and dread and horror of seeing one attempt at advancement after another fail, fall flat on its face, or backfire on me, to the point where I wished that I’ve never even tried.

If I had only known just how impaired I am, I could have made peace with the fact that I’m not at the head of the pack of my generation in ways that the present mainstream values. Nor should I bother even trying to get there in the standard-issue way. The ways I have are foreign and often unwelcome to others, but they’re my way. And they work for me. I could have just settled into doing the things that do come naturally to me, that are in my “wheelhouse”… things I am extremely talented at… instead of chasing after the waste of time limitations imposed on me by everybody else’s version of success.

Good Lord, if I’d only come to terms with being autistic early on in my so-called career, I could actually have enjoyed myself, all these decades, instead of always pushing myself to some neurotypical ideal, and then beating myself up for not achieving it.

What a colossal waste of time it’s been. What a goddamn fucking waste of time. And I’m done. I’m just over it. I’ve been knocking around on Planet Earth for over half a century, and I’ve had it.

It’s time to just enjoy myself. Do what I do. Forget about the whole getting-ahead business. I couldn’t manage it, if I tried. And I’m sick of trying.

But behind my privacy screens… there’s a whole other world waiting.

One that loves me and makes room for me.

That door, please.

I’ll take that door.

How is this worth it?

Girl standing with an umbrella in a storm with fire Artwork by Mirella SantanaGood Lord, I have been so busy at work, this past week. The past couple of weeks, actually. Maybe even farther back than that, but I can’t remember, anymore.

Getting in to the office at 7:45 a.m. is a huge disruption to the routine that works for me. But that’s what I have to do, right now. There are projects in trouble. There are people in trouble. There’s all kinds of drama that I have to sort through, because it’s stopping me from getting stuff done. It’s stopping everyone from getting stuff done.

And in the midst of it all… people digging in their heels (I love that image), back-biting, snarky undermining… Game of Thrones kinds of stuff.

That’s what makes me tired, more than anything else. The lack of logic. And all these people unable to focus on the job in front of them, because they’re all spun up over what they think somebody said to them and what they think it means.

I know people are upset about current events. North Korea is a wild card. I passed a military convoy on the highway, yesterday. Troops mobilizing. Hm. I dunno. Or maybe not. The whole thing just seems so stupid, and we have no visibility into what’s going on. Not really.

So, I have to just keep going, keep a level head, and not get too invested in everything that seems to be going on. I have to keep my sanity intact, and wasting a lot of time and energy on what-ifs is not one of those things that’s worth all the effort.

I’m not sure any of this is actually worth the effort. Sure, I keep my job. Sure, I learn new things. Sure, I make connections and whatnot. But my quality of life is just awful. I’m exhausted. In pain. Can’t sleep properly. Can’t settle into any soothing activity for long, before I’m dragged back into the fray.

And to think that some people really thrive on this… Interesting.

Well, it’s the weekend, and I have some things I need to take care of. I also have extended blocks uninterrupted time, where I can actually work on my stuff, instead of baby-sitting somebody else’s artificial drama. That’s really what it feels like — babysitting.

Well, whatever. I have my Stoicism to fall back on — and I have been. Actually my  Stoic outlook has really been saving me, time and time again. Just dealing with stuff in front of me, just working through it all and making the most of it… learning new things about myself and new techniques to handle other people… getting some good visibility with “the right people” (ugh – I hate that entire concept, but oh well)… and so forth. At least, I’m able to steer my projects through stormy waters to get to the other side. Where things are more calm. For the moment.

Ultimately, I do believe it will all turn out to be worth it. The storms I’m weathering now will certainly look good on my resume. Except that it sets me up to land in the middle of more storms, which is the opposite of what I want.

When you do something really well… but you hate every moment doing it… and people want you to do it some more… it’s the ultimate irony.

Well, I’m tired of thinking about it. I have the weekend to recover before I have to go back to yet more of the same on Monday.

Time to do some things I really enjoy.

And leave the rest of the world to its drama fog and firestorms.

 

August at last

red poppies in a field with blue sky overheadAs time goes on, I’m less and less of a fan of the summertime.

Days are too long and too bright.  Nights are too short, and I have trouble sleeping in the heat. I keep my air conditioner on, but it’s harder to sleep with that noise.

There’s too much activity. Everybody is running around DOING STUFF, and I have to do more stuff, too. I have to mow my lawn. I have to keep after the weeds and little trees sprouting up all over the place in my back yard. There are stink bugs, mosquitoes, moths, and all assortment of creepy-crawlies that proliferate. I know they have as much of a right to exist as I do… and they have a place in the world (probably more than me)… but they’re still a source of vexation.

The usual routine is thrown off, as people go on vacation, I never know who’s going to be in the office when, and it’s incredibly difficult to get anything done at work.

Well, whatever. I just have to take care of myself.

I’ve been laying low, for the past few days. Reading and listening to music and keeping life simple. Not spending much time on social media — it appeals to me less and less, as time goes on. I do value it for the links to recent research, but in all honesty, the level of discussion just depresses me, after a while. I guess I’m not naturally inclined to wedging my ideas into 140 characters of a Facebook post.

I long for extended thought… deep consideration. Really getting to the meat of things, rather than skimming along the surface.

Summer is passing on, and so I look back and take stock of what the past several months have brought.

round hay bales in field with cloudy sky overhead

Work has been fine, I suppose. It’s been too scattered for my liking, and I’ve toyed with the idea of moving on. How I would love to move on. But I’m in the middle of some big projects I need to finish, before I can do that. Plus, I’m just now getting the hang of a lot of stuff I do. So, why leave, now that I’m nearing a point of greater capability? Plus, the company is offering us all the chance to work from home up to 5 days a week. A lot of already do work from home a few days a week, but this would be official. And it would open the door to them changing the workplace configuration.

They’re talking about creating “the workplace of the future” or somesuch. And if you’re guessing that doesn’t make my heart brim with anticipation, you’re right. Too often, that sort of talk is about open workspaces, which is pure hell for someone like me. But if I can work from home 3-4 days a week, then that’s fine.

I’m working from home today. And planning a nap at midday. I have things I’d like to do with myself today, other than work, and the dreary conference calls I’m supposed to be on will make that possible. I’ll dial in and do a damn’ good job of simulating engagement.

And I’ll look back on the past few months, think about what I’ve learned, what I want to carry forward into the fall… I know it’s early. It’s only August, after all. But the light’s getting less, the temperatures are dropping, and I need to prepare for the coming fall. Heck, I need to prepare for friggin’ everything, these days. That’s what it feels like. Maybe that’s all part of getting older, but I’m feeling more autistic now than I can remember ever feeling. Even when I was melting down regularly, I didn’t feel as generally sensitive as I do now.

Maybe I’m just settling into this autistic identity. Getting used to being this way — and getting the hang of accommodating myself. Or something like that.

Anyway, I have to dial in to a call in 9 minutes, so I’ll wrap up now.

Moving right along… in the ever-widening/ever-tightening cycles of my life.

So it goes.

 

My parents never could have filled out those evaluations

family with parents in focus and kids in blur

So, this showed up on Twitter a few times in the past days:

Sex Differences in Parent-Reported Executive Functioning and Adaptive Behavior in Children and Young Adults with Autism Spectrum Disorder

Emily I. White, Gregory L. Wallace, Julia Bascom, Anna C. Armour, Kelly Register-Brown, Haroon S. Popal, Allison B. Ratto, Alex Martin, and Lauren Kenworthy

This study is the largest to date examining executive function and adaptive skills in females with autism spectrum disorder (ASD). Its primary aim was to utilize parent ratings of real-world executive functioning and adaptive behavior to better understand whether females with ASD differ from males with ASD in these areas of everyday functioning. We compared 79 females with ASD to 158 males with ASD (ages 7–18) who were statistically matched on age, IQ, and level of ADHD or ASD traits.  . . .  Females were rated by parents as having greater problems with executive function on the BRIEF. Parents also rated females as exhibiting more difficulties than males on the Daily Living Skills domain of the VABS. There was a correlation between increased global EF difficulty and decreased adaptive ability in both males and females. Our results indicate relative weaknesses for females compared to males diagnosed with ASD on executive function and daily living skills.  . . . These findings indicate specific liabilities in real world EF and daily living skills for females with ASD and have important implications for targeting their treatments.

While I do think it’s helpful to actually be studying girls on the autism spectrum, I honestly have to wonder how accurate the parents’ view of their kids is/was. I know that my parents had some very strange ideas about what was going on with me, as a kid. I was under constant pressure to perform to their specifications, and when I succeeded, I became even less visible to them — because I wasn’t failing to comply with their (unrealistic) expectations for me.

Of course, I was usually in trouble for one thing or another, and that didn’t help my executive functioning at all. I remember many a time when I simply couldn’t finish a job — or start a new one — because of extenuating circumstances. I got overwhelmed. Blinded by the bright sunlight. Loud sounds like the vacuum cleaner hurt my ears, so I couldn’t do that chore on Saturday mornings. The smells of bathroom cleaners nauseated me, which made me work slower — and appear less capable. I screwed up things left and right because of my sensory issues and general state of overwhelm. I was always tired. I used to go to bed before 10:00, while all the other kids stayed out late and played. I was exhausted. All the time. There was no way anybody could get an accurate reading on my abilities, because I rarely had the opportunity to function when I was at my best.

And certainly never under conditions that I chose and could control. I was always forced to operate in situations where I was at my worst — and then I caught sh*t for not living up to everyone’s expectations. I get tired, just thinking about it.

I have to seriously wonder about the ability of parents to estimate their daughters’ capabilities, because of my experiences. I know I’m not alone in this. So many of the expectations of girls are unrealistic, from the foundation up. When you’re different, that doesn’t necessarily mean you’re disabled. Or that you should get some sort of intervention to make you more compliant. It may actually mean that you’re under more pressure, which means you have fewer resources to devote to executive functioning or figgering out WTF people expect of you. But because it looks so easy for the other girls, you’re compared unfavorably, time and time again.

I wish I could see the exact measurements, to see how the girls were graded. I also wish I could see the conditions that each and every one of the girls were living under. Not that any of the parents would have been neglectful or abusive (though that can be in the eye of the beholder). Rather, are the living conditions of those girls inherently more challenging than ones faced by boys because, well, they’re girls?

Or maybe they’re biologically female and/or gender-assigned as girls, but they’re actually non-binary or they’re “little transmen in the making” (please don’t burn my house down for using the wrong terminology – I’m trying to be playful, fer Chrissakes). Wouldn’t their gender differences / struggles have an effect on their presentation and/or abilities as well?

The authors of the study seemed pretty well aware of these kinds of limitations (bold emphasis is mine):

It is necessary to recognize the limitations of this mainly exploratory study. The measures of both EF and adaptive ability are based on parent report and lack the additional input of other adults in the participants’ lives, the participants themselves, and reliable lab-based tasks. Although this study does not provide indications of the etiology of these differences (e.g., whether parental bias based on sex-specific expectations for these skills drove sex differences), it is notable that the differences in adaptive behavior and EF in this study were found on measures that are either sex normed or derived from a balanced male:female standardization sample. It is important to recognize the possibility that utilizing norms based on typically developing youth could mask ASD-specific sex differences.

and

Like others in the field, we have conceptualized individuals in a binary way (male vs. female) when in fact there could be many more profiles, or possibly no difference in profile, as we include those who are transgender and gender nonconforming. Given high rates of gender variance in people with autism [Strang et al., 2014], it is important to include these underrepresented groups in future research.

Given the present findings and input from selfadvocates about the propensity for females to compensate for social and communication deficits, increased clinical and research inquiry is needed into distinctive cognitive and behavioral phenotypes in females with ASD. This study also makes clear the importance of evaluating functioning outside of ASD-specific symptoms, into related domains that have major impacts on quality of life and overall daily functioning. Also, paying particular attention to . . .  getting the complete real-world picture of a female’s situation.

So, that’s good. It’s always nice to have researchers see that part of things more clearly… unlike other research I’ve read lately, that actually used their limitations as a justification to follow their in-my-view-deeply-flawed line of reasoning… straight to the clinical cash register.

Ultimately, though, I do think research based on parental observations is… tricky. Especially if the parents themselves have blurred vision from their own issues or limitations. What parent doesn’t have their own “baggage” to haul around? And what parent isn’t at least a little blinded by the hopes / ambitions they may have for their kids’ maturity? Especially with girls.

Yes, especially with girls, our variations so often get called out as deficits. Our differences are punished socially and personally — sometimes severely. After all, we’re females. We’re supposed to be the culture-carriers of the human race. If we fall down on the job, what hope is there of humanity’s future? I’m only being partly facetious. That line’s been laid on me so many times in my life, I can’t even begin to say.

I just wish I had counted all those times, so I’d have a good body of data to refer to. Sources. Citations. And so forth.

Well, anyway, at least this paper is a step in the right direction. The authors weren’t total jerks about their work, which is very heartening. And while I do differ with some of the conclusions drawn — mainly because I don’t feel extenuating circumstances of the girls’ lives, including gender expression pressures and social costs exacted on a daily basis, could have been factored into all of it — it’s still a start.

And when it comes to women and girls on the autism spectrum, we need more of that.

You can get limited access to the original paper here:  http://onlinelibrary.wiley.com/doi/10.1002/aur.1811/epdf?referrer_access_token=IW-FAuQkXF-Jxngb3PBDD04keas67K9QMdWULTWMo8PywqLXap6ih90kEZ-P27CZbOh6WHDJJ9cl-95q-zflFMvQ-ylh56ypdC-QI1mkdMqs5SH5iJvPXtLg0fz7PmVx5JoFIUbNE31_xC9OnsH2NivXjmjuI9Ly6KpvW7j-c_lU0mr0kstMuzyfToIfswF-PnGiMfLrT3RjDDSgwhdUBA%3D%3D

I do recommend you give it a read, if you’re so inclined.

Sweet, sweet rest. Sweet, sweet relief

I’m working from home today.

I’m tired.

I’ve done some work.

Now, time for a nap.

So I can get up later and feel human again.

And do more work – which I actually really enjoy, when I’m not exhausted.

Back to bed.

For now.