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.

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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! 😀

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.

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

field with blue sky and clouds overhead

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

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

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

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

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

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

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

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

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

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

Lord, how I’ve suffered.

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

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

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

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

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

A lot.

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

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

 

Embracing the rigour of the #autistic life*

Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.
Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences. – Quote from The #autistic medical model makes me sick

* Note: I’ve spelled “rigor” with a “u” (British spelling) because it actually feels more rigourous 😉 Ha ha! Just having a little semantic fun on a Friday.

This is another one of those dog-tired days, when my mind is spinning and I have no idea how I’m going to get through the day. I’ll get through it, of course. It’s what I do. But in one piece? In a good frame of mind? I dunno.

I have to deliberately remind myself of the fact that I’m tired, because I tend to lose sight of that. I get so tired, I can’t figure stuff out — including what sorts of emotions I’m having, and what I should do about them. I get physical weariness confused with depression and low self-esteem. It probably sounds strange, but a lot of different emotions feel like each other to me, so I have to sort them out logically, scientifically, objectively, in order to not get dragged down into an emotional hole. Once I figure out what the emotions are really about, I can get on with my life without quite as much suffering.

Come to think of it, I think that’s why blogging helps me so much. It helps me sort out my emotions — literally — and figure out how I’m truly feeling.

Anyway… I’ve had a heavy week of peopling, and it’s taken a toll. I had a lot of meetings, some of which felt like utter failures, but which were actually okay. Nobody seemed as horrified by my performance as I was. They all seemed to think everything was fine, while I was convinced I was careening towards disaster. I know where the disconnect is happening. My emotions are getting jumbled up, and I don’t have the presence of mind to sort them out, sometimes. I haven’t yet gotten back in good shape from my business trip, last week… and last night, it felt like the whole world was falling down around me. I just wanted to crawl into a hole and leave everything behind. I really wanted everything to just end. My marriage. My job. My mortgage. I wanted to take the money I’ve saved, get in my car, and keep driving till I didn’t recognize anything around me.

Start fresh. Leave all the overwhelming and inescapable responsibilities in my rear-view mirror. Literally. Stop it all. Just stop. And start fresh. Run away! Run away!

Run away! Run away!
Run away! Run away!

I knew I was tired… logically, I knew it. But the whole alexithymia thing was dragging on me (as it often does). I knew I’d had a highly interactive week. And I also knew that I had fallen behind in a lot of my work. But I was really unclear about how I was supposed to feel about that. Was I supposed to be proud of myself for making it through at all, or frustrated with myself for not doing everything I’d intended to? Was I supposed to be depressed because I didn’t live up to my promises, and I’m putting my team and projects at risk? I wasn’t clear about all the stuff I’d actually gotten right — it just felt like everything was wrong. Again, emotional confusion based on my physical state… bone-tired weariness….

And now I can’t find my power cord for my work laptop. That’s unfortunate. I’m working from home today, and I’ll need to plug in. For a while, at least.

Well, I always have my mobile phone to use in a pinch. I can do just about everything I need to do on that device. I’ll just be judicious with how I spend my power. And I’ll order a new power cord from facilities.

Or, I’ll drive to the office and get the cord I have there — no, come to think of it, I’m not doing that.

But I digress. I started out wanting to write about how an autistic life is a rigourous life, by its very nature. In my piece about how the autistic “medical model” makes me sick, I talk about how just because autism can be demanding — even depleting — that doesn’t make it wrong or disordered, in and of itself. It’s demanding, yes. But it also has a whole lot of advantages, and I wouldn’t trade it for the world.

Wanting to “cure” autism, in my mind, is like wanting to cure fair skinned people who live in sunny climates. Should “ginger” folks who burn at the slightest exposure to the sun be forced to expose themselves to sunlight without any skin protection so they can get used to the UV rays. That’s never going to work. We all know that. It’s just going to harm them. Burn them. Make them miserable. Possibly give them cancer, eventually.

Or another analogy: forcing kids who are allergic to nuts to eat peanuts, so they “get used to” them, and refusing to give them a shot to counteract the anaphylactic shock. That makes no sense. No parent in their right mind would do that to a child they love, and countless schools jump through all kinds of hoops to keep allergic kids away from nuts. But they won’t make accommodations for autistic kids who are suffering — often (like me, once upon a time) in silence.

“Exposure therapy” for autistic people is a ridiculous concept. And yet that’s what autistic people are expected to pursue — “suck it up” and just get used to the equivalent of burning sunlight on fair skin… or metaphorically eat a handful of peanuts (with no Epi-pen in sight), to acclimate their bodies to the substances that make them swell up in life-threatening ways.

It’s absolutely pointless. And it’s counter-productive in many ways. Accepting that an autistic life is an exceptional life, which requires greater rigour than the neurotypical mainstream way of life, is — to my mind — core and critical to understanding autism, in the first place. And that acceptance needs to happen on two fronts — 1) with the autistic individual (who probably already knows it), and 2) in the broader world outside, which has a lot to learn about how to A) stop hurting us, and 2) make the most of our talents and abilities.

See, it’s not easy accommodating us. It’s not easy getting accommodations in the first place. In my case, alexithymia keeps me from seeing and sensing clearly what I actually want and need. I literally do not know, at times, just what that is. And then I need to figure out how to express those wants/needs in a way that makes sense to neurotypical folks. It’s not easy. And I often just “bag it” — leave myself and my own wishes/needs out of the equation, so I can live my life more simply. Once I get what I ask for, I then need to navigate using it properly and managing the situation to make sure I’ve gotten it right. Hm. That’s certainly not easy! And I need to give feedback to people about whether I’m all set or not — yet another challenge.

For the rest of the world, it’s even more confusing. They don’t understand how I function, they don’t understand what I need or why I need it. And they often don’t know whether things are working as desired.

Fer-example: People I work with don’t understand why I sequester myself in my cubicle, more often than not. They think I should be socializing with them, chatting for extended periods of time about this, that ‘n’ the other thing. They don’t seem to understand why I wander off when I’m overwhelmed, and they don’t get why I sometimes chase them out of my cube. They don’t understand why I’m not a big fan of going to loud, busy bars after work to socialize and eat food I shouldn’t be eating, surrounded by people who are drinking things I dare not drink. I’ve tried to explain, but it falls on deaf ears. I’m in the minority. My job is to “catch up” with the rest and conform. For the sake of the team.

My boss seems particularly mystified by me, even though I’d bet good money on the chance he’s on the autism spectrum, himself. He’s got a very Aspie-fied approach to understanding people, and social interactions seems to be his #1 area of specialized focus. He makes the effort to include me, to get me involved in things, then he’s confused when I’m not all whoop-dee-doo! about participating in things like business trips to Las Vegas, or wading into receptions and social “mixers” with complete strangers.

The thing is — and this is what I think gets lost in the whole autism accommodations discussion — when I (and others) are provided the different circumstances we need, in order to be at my/our best, the results far, far outweigh the costs, in terms of overall value/expense. There’s a massive “ROI” on letting me (and others like me) function the way that best suits my/our autistic nature.

That’s why the general concept of “accommodations” kind of irritates me. It’s too disability oriented for my taste. It feels like it’s all about managing deficits, preventing meltdowns, and doing the equivalent of replacing all the divots on the golf course, so somebody else can play through without disruption. It feels to me like it’s too much about avoiding disaster, and not enough about making possible the amazing, remarkable, unique results we can provide… if we’re just allowed.

Yes, autistic folks DO have issues with environmental aspects that are best avoided/mitigated. Yes, we DO suffer terribly, when we’re not accommodated and we’re forced to “suck it up” and just power through. The thing is, when we live and operate in a world that is exactly the way we need it to be, amazing things can happen. I’m not just talking about inventions and discoveries and cultural creations that move the human race forward. I’m talking about an extraordinary quality of life and humanity that can emerge to widen the understanding of what it means to be human, what it means to have a soul.

There are plenty of autistic people who don’t seem to have any particular skill or talent that sets them apart from the neurotypical crowd. And those people have value, as well. The ones who have learning difficulties or disabilities. The ones whose IQ scores are lower than expected. The ones whose burning passion is a select class of inanimate objects that most people don’t give a second thought to. And then there are the ones who have no burning passion at all, who don’t know what they’re feeling about anything, who feel no joy or elation, who frankly don’t know why they’re even here. Those autistic people have value, too — in ways that very few people can understand, but still matter. Very much so.

Autism is by its very nature rigourous. And when you accept that, welcome it, even embrace it, you’ve got yourself a pretty interesting life, I have to say. For me, the rigour happens every day. And by the end of it all, I’m wiped. Just done. By the end of a work week, I sometimes don’t even know my own name or recognize myself in the mirror. But I pull myself together and keep going, regardless of whether or not I’m on good terms with my reflection.

Because there is work to do. And I choose to do it.

For today, I won’t withdraw all my savings from the bank, hop in my car, and drive away to leave it all behind. There’s a good chance I won’t do that tomorrow, either. Or the next day or the next day or the next… It’s enough to recognize that that’s what I’d absolutely love to do, because this life-ing stuff isn’t easy. It’s rough-and-tumble, and it hurts like hell, sometimes. But that’s the deal. Joy and pain. Sunshine and rain. It’s all part of it, and yeah, it’s worth the trouble. Every bit of it.

Autistic rigour. I wouldn’t have it any other way.

Sharing : The Autism Definition Debate – Language Matters

Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity (Leatherland, 2017).
Quote reads: Autistic individuals share a neurological type, which is qualitatively different to that of non-autistics, and which will necessarily impact, both positively and negatively, on aspects of their thinking and learning; sensory processing; social relational experiences; and communicative style, abilities and preferences. An autistic person’s experience of and ability to be successful in the world, will be dependent on the closeness of compatibility, between their individual profile of skills and requirements and their physical and social environment. Levels of sensitivity to environmental factors vary between individuals, and within the same individual over time, so that the presentation of autism is ever changing. A person’s neurological type, however, remains constant, and being autistic is a lifelong identity (Leatherland, 2017).

Here’s another great contribution by Luke Beardon (and others) — The Autism Definition Debate – Language Matters

Education is all about teaching and learning. Well, it should be all about teaching and learning, however, for all teachers to teach and all learners to learn, it must also be about equality of access. From my perspective, as a member of The Autism Centre, equality of access, through the genuine inclusion of autistic students – which sometimes means adaptation, and sometimes means making reasonable adjustments under the Equality Act – always means that practice should be based on a good understanding – not necessarily of autism per se, but of how autism impacts on the student, within his or her own specific environment, at any given time.

But where is the starting point for all this understanding? What are the building blocks upon which to develop educators’ understanding, which might lead to good teaching and successful learning, and reduce risk of inequality for autistic learners?

Read the full piece — The Autism Definition Debate – Language Matters

The #autistic medical model makes me sick

iceberg floating in water
There’s more to my autistic self and experience than the medical model can conceptualize

Note: This piece is about me — and only me — it’s my deeply considered opinion, based on my own personal experience of inhabiting this planet for over half a century. You’re free to believe whatever you like about the true nature of autism. But this is my stance (right now). If you disagree, write a better blog post and tell me about it. 🙂

Lately, I’ve come across a number of bloggers talking about how autism is more than just a “difference” for them. It’s a genuine disability. They suffer from it. They have family members who appear to suffer intensely from it. Autism is the source of tremendous pain and struggle for them and their loved-ones, and there is no way they’re ever going to sanction autism as a “difference”. It’s too disruptive a force in their lives, for that to ever happen.

I also had a brief exchange with someone last week who actively embraces the idea of autism as a disability, and they align themselves with the disability rights movement. They have the best of intentions, I believe, and from a philosophical point of view, I can agree with the value in doing that.

There are a lot of autistic people who are disabled. There’s a whole lot they cannot do, and my never be able to do, because of their issues and traits. I know a handful of autistic folks who wouldn’t last a day in the working world I inhabit. I’ve also known some autistic folks who do extremely well in my work environment, but struggled terribly with other issues.  Autism is no joking matter, when things are at their worst. I’ve been through the proverbial “wringer” many times, myself, and I have to continually make conscious choices for or against things, because of the effect I know they’ll have on me.

One day, I can be completely laid out by my issues. The next, those very same issues lift me to sublime heights. If I remove the causes of my pain, I remove the source of so much inspiration. It’s all a matter of degrees with me.

For the record, I don’t consider myself disabled. Yes, autism can be a disabling influence in my life, but its effects are temporary and mutable. It’s like being a sprinter who has to run a marathon, every single day of my life. My routine exhaustion and need to remove myself and recharge (lest I begin to implode from overwhelm and sensory overload) is conceptually no different for me than the results of a strenuous workout. Every day is strenuous for me. I’m constantly testing and pushing myself. Does that make me disabled? I don’t think so. It makes me different in ways that are more demanding than the average person experiences.

Is a thoroughbred racing horse disabled, because it can’t eat the same types of grains as other horses? Because it is so high-strung and hypersensitive that it develops inexplicable white spots on its legs? Is it disabled, because it’s temperamental and prone to outbursts? No. It’s a thoroughbred. It’s a unique and different kind of horse, and when it’s allowed to do what it does best, you’d never ask it to be anything different.

And I come back to it again, is autism itself THE disabling thing?

I’m not so sure. I mean, being autistic predisposes me to overwhelm, hyper-sensitive pain and discomfort, as well as the occasional meltdown/shutdown. Much like having fair skin predisposes you to getting sunburned, if you don’t use sunscreen. In the case of fair skin, the solution is not to change your skin, add more melatonin, or convince yourself the sunburn doesn’t really hurt. It’s to take steps to avoid sunburn.

And that’s where I see the medical model of autism going afoul of my autistic person. According to the medical model, autism itself (or in the above example, fair skin) is the root of the problem, and it needs to be eradicated. It’s a disorder. It’s a dysfunction. It’s an aberration that — for the sake of smoother functioning of society — needs to be changed in some way, if not gotten rid of entirely.

Classifying autism as a diagnosable disorder (and I’ll freely admit, the idea of diagnosis appeals to me, not because of the medical overtones, but because of the science — Science!cue Thomas Dolby) makes it a “thing” that needs to be fixed, that needs to be addressed. It removes it from me, as a person, and turns it into the cognitive-behavioral equivalent of a tumor, a mass, a growth of some kind. Maybe the “mass” is benign, for the most part. Maybe it just causes occasional discomfort. Or maybe it impinges on nerves and causes me unspeakable pain. In any case, it’s something separate and apart from me that arises from a physical cause and is addressed as a distinct (but disposable) aspect of my life experience. According to modern medicine, this condition, this disorder can (and should) be treated.

The thing is, it’s all more complicated than that. Yes, my body is differently “tuned”. Yes, there are experiences that others take for granted, which are unbearable to me. Yes, there are many aspects of my life which are physiologically uncomfortable, even painful, and depending on my state of body and mind, those aspects may be more or less extreme. But is a physical/medical approach the one and only approach I should take, when it comes to managing my situation?

Is changing the essential makeup of fair skin the only way to avoid sunburn?

Obviously (to me, anyway), there’s more to it. There should be more to it. Because what parts of life are ever that simple? Few, if any.

There’s the whole environmental thing. And the whole social thing. And the whole accommodations thing. And the whole pro-active self-care thing. There’s me taking care of myself, and there’s having other people to help watch out for me.  There’s my diet, there’s my exercise, there’s my social circle (or lack thereof). There’s my inner state, my outer circumstances, my interactions with the world around me… That all comes into play in an intricately interconnected dance, so that I cannot possibly ascribe to only the medical model as a way to explain and address my autistic experience(s).

It’s all very well and good to seek physiological explanations for why things are like they are with me. I tend to turn to biochemistry and neurobiology for explanations about why people behave like they do, and in some cases, they offer greater clarity. Certainly more quantifiable data.

But to look at those quantifiable data in and of themselves, with no connection to the outside world and the artificially created circumstances… that’s just asking for trouble.

Because then the problem originates in my system. It says there’s something wrong with ME, my physiology, my own personal context. It seems to absolve the outside world of any kind of credit or culpability and treats my system as a self-contained, hermetically sealed entity that has a mind of its own and does what it pleases… just ’cause it feels like messing with me.

To overlook the effects of environment, as well as human-made complications and challenges, does my physiology a disservice. It makes it sick. It makes ME sick. It makes us out to be disordered, in and of ourselves, rather than in relation to hostile circumstances.

Expecting me to just motor through life, carefree and happy-go-lucky, regardless of extenuating conditions is like, well, expecting a fair-skinned individual to walk across the Kalahari Desert without any cover-up or sunscreen, and not be sunburned. It’s like running a thoroughbred hard, putting them up wet, and then repeating the process again the next day — or that very same afternoon — and doing it again. And again.

So, that’s my “take” on the medical model, as it applies to me. I’m sure I’ve missed some important nuances, and I am probably over-simplifying things, here and there. Or maybe I haven’t, and I’m spot on, all across the board.

Bottom line: the medical model may work for some things. But my autistic nature and experience? Nope. Doesn’t do the job on its own.

And I’m sick and tired of being treated like I’m sick and it’s all my (and my autism’s) fault.