More work… looking forward to winter

leaves in trees
Just hanging there. Taunting me…

It’s November. Nearly halfway over. And the leaves are still hanging on my trees. I need them to fall, so I can rake them up and get on with my life. I don’t mind raking. All my neighbors either use leaf blowers or they drive their riding mowers around their yards, sucking up the leaves into the compartment behind the mower.

I have a leaf blower. But I hate it. It’s loud. I need to get some ear protectors for when I use it, but better yet – never use it at all.

Fall is work time for me. Cleaning up the yard, raking, cleaning out the garage. And of course, finishing up the year at work. I have to be on a conference call in another 30 minutes — 8:00 a.m. on a Saturday is not my favorite time to be working, but we have work that needs to get pushed out to the world, and this is just part of the whole scene.

I also get a break for Thanksgiving week, as well as Christmas week. I get full weeks off, each time, which is pretty amazing. In past years, I had maybe one extra day off before Thanksgiving, and another day off after that. And for Christmas, it was always a challenge trying to juggle work and holiday celebrations. Combined with lots of driving to see relatives, various holiday gatherings with friends and workmates, etc. etc.

Not this year, though. This year, I get a break, which will be most welcome.

And I’m going to make the most of it.

I’m really looking forward to this winter, I have to say. The darkness, the cold… When it gets below freezing, I feel the best. I actually feel much better, the colder it is. If it’s just above freezing, it feels cold to me. I think my internal heating only “kicks on” when it’s bitter cold outside.

Later, after my call is done, I can go outside, maybe do a little more raking (even though all the leaves aren’t down, yet), and run some other errands. I’ve got a list. Of course I have a list.

I also have a handful of other things I need to do. Like shop for food and visit my friendly neighborhood health food store to pick up non-mainstream health supplies. It will be good to get out. I’ve been practically merged with my work laptop for most of my waking hours, for the past 5 days, and this morning will be more of the same.

I could really use a full day off. Heck, I could use two days off, where I don’t have to do anything for anybody else, and I can move at my own pace. But that’s not going to happen for another week, at least. No, wait – it’s going to be longer than that, because Thanksgiving week, I’ll be traveling to visit family several states away. So, it’s more like three weeks, till I catch a break.

Even then, I’m not sure it’s going to be very relaxing. Because these deadlines I’m on right now are leading up to new features and functionality on my employer’s website, and that will keep me on my toes, tracking how it’s going and reporting in to people On High about what’s good, what’s bad, and what needs to change.

What a pain in the a** it all is.

Well, anyway, this is what I get paid the big bucks for. And I’ll just need to find a way to manage this whole thing and spin it properly so the People In Charge continue to have full faith in me. I just need to come up with good systems for reporting, so I don’t have to constantly scramble to keep the People In Charge appraised of what’s what — just let the systems run themselves and report out from there.

Oh, that reminds me… there’s something else I need to do for Monday. I promised someone I’d get them numbers. Guess I should do that.

I’ve digressed.

I have a lot going on. It’s overwhelming, if I think about it. But if I just keep my lists and I take good care of myself (extra rest, not worrying about getting everything perfect all the time), it’s totally do-able.

I just need to do what needs to be done. And that’s something I do really well.

So, that’s something.

Now, if only those leaves would fall … before the snow comes along.

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Using all this energy *in* my favor – not against me

traffic jam taxi cabs in new york city
This is pretty much how I’m feeling, these days. Jammed up.

Blocked.

Stopped in traffic, when I should be moving forward, consistently, cleanly, systematically.

If I were left to my own devices, I could totally do that.

But … people.

People and logistics. And politics. It’s all blocking my path. And it’s exhausting. So, I don’t have as much energy to get all creative ‘n’ that and come up with innovative new ideas. The best I can do is slog through. And for this Autistic, that’s about the worst thing anybody can ask me to do.

I’m a sprinter. As well as a marathoner. And I need to sprint periodically, to really stretch myself and get things accomplished. Right now, I’m stuck in the herd with a bunch of non-Autistic folks who have ulterior motives and political agendas.

And it’s next to impossible to get anything done.

How frustrating.

Well, it’s not all bad. Once I get done with my whining and complaining, I can see just how much of an opportunity this is for me. I’ve been wanting to make a significant change in my life for some time, but I’ve held off because I could always tolerate how things were. I’m not talking about being satisfied and fulfilled and doing my best work. I’m talking about just not being too depressed by my situation to move, and being able to maintain at the most basic level to “pass” as someone who’s happy and productive and content where they are in life.

All that acting gets tiring.

So, being in this stupidly impossible situation is giving me motivation to do something about it. And I am. I’ve gone through my projects list and picked a few that I’m going to complete over the next year — and a few that I’m going to focus on through the end of the year. I do well with deadlines, especially when I set them. And I have to say, my methodology and my approaches are really, really good. I generally can’t pull out all the stops and really GO with it, around the people I work with, because they just don’t operate at the same level as I.

That’s not me being arrogant or egotistical. It’s me being honest. I’ve worked in too many high-stakes positions before, with companies that were at the top of their industries, and I’ve been doing this a long time. So, I’m just trained that way. Many, if not most, of the folks I work with are 10-15 years younger than me. They haven’t been through the “meat-grinders” that I have. They haven’t been worn down to nothing, burnished and polished, quite the same way I have. And it shows.

And there’s very little I can say or do that makes any sense to them, because they don’t have that history and that perspective.

So, I just do my own thing in my own way. I inject every bit of professionalism and experience into my own projects, that I miss on a daily basis. Because I’m a coder and a user experience designer and a tester and a sys admin, I can set things up for myself that meet my standards and make sense to me. Every bit of laxness, every bit of excuse-making and risk-aversion I experience at the office, I counteract with my own work on the side. And that’s the one thing that saves me, really. It does my spirit good.

Some people have kids they live for. They’ll go through anything because they love them. I suspect that’s one of the reasons that people I work with are so willing to tolerate all the B.S. that takes place each day — they’re doing it for their kids. Well, I don’t have any kids. All I have is my work, and the fruits thereof. Sacrificing my sanity for the sake of … anything … well, that doesn’t make much sense to me.

So, rather than letting it bother me, I just channel my frustration into other things.

And get on with creating the kind of work and life I want to have.

If the rest of the world can’t accommodate me (and they can’t/won’t), I’ll carve out a space for myself. Everybody else can do what they like.

I need to do what I like, as well.

And that’s that.

Another week goes by…

It’s Tuesday. It feels like Friday. I’m churning towards a Big Deadline at the end of this week, and then another one next week. And then the holidays hit and it’s time to drive down to see two sets of families in two different states, each of them a day’s drive apart.

Oh, joy.

Actually, I’m mostly okay with all of this. I’m just maxed out. Frustrated and over-extended and super-sensory.

Which means I need to be careful… very careful… Because the last thing I want, is for all these deadlines and this frantic work situation to wreck my holiday season. I only get to see my family once, in the next 2 months. We used to drive down for both Thanksgiving and Christmas, but that stopped years ago. We both got too old to run all over creation. And – surprise – it turned out to be pretty awesome to have one of the holidays to ourselves.

Silence. Peace. Our own schedule on our own terms. Glorious.

And this year promises to be even more glorious, because work has an enforced shut-down over the holidays. Between Christmas and New Years, nobody is allowed to work (oh, except for the people who keep the IT systems running and keep the money coming in – they never really get time off). So, not only will I have that time at home on my own schedule, left to my own devices, but I also won’t have to juggle work and “alternate” schedules with all the people who are taking two days off here, three days off there, and puttering around in between.

I’m really looking forward to that. For sure.

It will give me time to catch up on my reading. And my writing. Especially my blogging, since that’s really suffered in the face of all this work. I haven’t been around much at all, between being overworked, and then having to catch up with myself, getting pulled in a million different directions, and also helping my partner with a bunch of stuff she’s got going on. I honestly don’t know where the time goes. But the volume of work, as well as the intensity levels of Every . Single . Day . has all just been ridiculous.

Deadlines. Harumph. Please.

I’m not even sure why I care so deeply about all of it.  I mean, it’s not like The People In Charge really give a damn about me and my health. It’s not like anybody gives a damn, period, about the challenges I face. Over the weekend, I realized — for real — that the only presence in my life that is actually 100% on the same wavelength as me, is my body. I love my friends and family, but they have their own challenges, and my body is the only presence my life that is 100% attuned to me, that can literally read my  mind, and that can — and will — respond to me in ways that are all about me, every single time.

The thing with people — and I do love and care for the folks in my life — is that their lives are circumscribed by their own constellations of dynamics… which have very little to do with me. It’s like we are all steering our proverbial ships by very different stars in the sky. Sometimes we cross paths. Sometimes we head in the same direction. But really, we’re oriented in our own ways that could easily have nothing to do with each other.

I think about this a lot, as I age. We live in a time when everybody’s supposed to be so connected and social, but we’re less connected than ever. Sigh.

Oh, well. It’s time for my second breakfast. My schedule is a little thrown off by the time change, but I’m adjusting. At least I have an “extra” hour in the morning. And I absolutely love the long nights and cold weather. It’s so much better for me than summer, with all its light and heat.

So, that’s something to be grateful for.

Now, back to work. I’ve got a deadline looming.

I know it’s going to be difficult – what can I do about it?

holiday stress full page
So, I’m a little stressed, thinking about the holidays…

I’m a terrible complainer. That is, I tend to do it, but then I realize how terrible I sound (to myself), and I have to stop. Some people have no problem announcing their woes to the world, but for me, “if I name it, I own it”. If I can see I’ve got a problem, then it’s incumbent on me to do something about it.

Not everybody feels the same way, and that’s fine. everybody’s different. I just have a really hard time living with myself, when I’m moaning about every little thing.

And every now and then, I do.

So, this year, I’m keenly aware of the approaching holidays and how they have affected me in the past. I don’t want to have to go through it all again — and again — and again. Past years have been so traumatic, and mainly because I wasn’t aware of my issues, and I didn’t manage them properly.

This year is different. I mean, I knew that I was “different” and that certain things bothered me more than other people.

  • Crowds
  • Loud noises
  • Bright lights
  • Changes in diet
  • Changes in routine
  • Interacting with hyposensitive, sensory-seeking family members
  • Lots of people talking all at once
  • Stressful events like shopping in big-box stores
  • Having to choose just the right thing from a large array of stuff

So, basically, the holidays.

They bother me. And they bother a whole lot of other people on the Autism Spectrum.

So, I know this. It’s not news to me. And being even more keenly aware of it, since my formal assessment, this past July/August, it comes even more front-and-center.

And with it comes my responsibility.

I’m big into responsibility. I’m not sure why it’s so important to me. I seem to be surrounded by people who don’t give it a second thought and can’t be bothered with it (maybe because I’m more than willing to be responsible? probably…) But it’s really been the secret to my success throughout life. I have to own my own experience, and if I am aware of something I can manage, then it’s my job to mange it. Especially if not managing it will make me and everyone around me miserable.

I don’t get a “pass” because I’m Autistic. I don’t get special dispensation and license to be an obnoxious asshole because I have difficulties figuring out social interactions and other people’s needs and responses. Since I know I have those challenges, it’s my responsibility to manage my situation so that I’m not an obnoxious asshole.

If I do otherwise, that makes me a sociopath. I’m not a sociopath. I’m not more important than everyone around me, and my personal expression isn’t a higher priority than the well-being of the whole. I’m a part of something larger than myself, and it’s on me to hold up my end of the bargain.

Because I can. Because I’m Autistic. I’m whip-smart in some ways and clueless in others, and that means I have to apply my whip-smarts where required, to keep from being a total effing liability to everyone around me.

Life is hard for everybody. We all have our challenges. Prioritizing my happiness over others’ well-being doesn’t help. At all.

So, that’s the deal with me. I have awareness about my situation, and I have tools to deal with it all. At the very, very least, I have the ability to write down WTF is up with me and sort through it. I have a pretty good sense of where I want to go in life and what outcomes I want from different situations, and if it’s not working out, then I’ll use my super Spidey-sense to ascertain what can be done… and how to do it. And I can certainly follow up afterwards to see what worked, what didn’t, and so forth.

So, enough advance drama. Anxiety doesn’t help me one bit. If anything, it makes it harder for me to function. All across the board. I need to keep focused on what is real, what is in front of me, what is genuinely problematic.

Life is challenging enough, dealing with real situations… why make it even worse by coming up with something new and novel to hassle over… when it might not even happen?

Okay, enough thinking. Time to get on with my day and make the most of my day off. And get prepping for what’s to come.

It’s that time of the year again(!)

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

Ah, the holidays… I’ve been blissfully ignoring their impending appearance. But guess what? It’s nearly November. And that means, I have about a month to prepare for Thanksgiving. And then Christmas. And then the New Year.

But suddenly, I am keenly aware of the challenges before me.

Run away! Run away!!!!

Last year, my partner and I planned to go see our families at Thanksgiving.

Then the election happened. And all hell broke loose in the family. Of course, it was a very demure, well-behaved hell, but it was hell, nonetheless. The winners gloated and cried “Huzzah! The world is ours for the taking!” The losers went into existential panic. My partner got really sick with a respiratory infection. And we stayed home. Didn’t see anyone. Of course, we had some illnesses and a death and some happier rites of passage later on in the year, so we did get to see everyone, after all. Just not last Thanksgiving.

We’re going to give it another shot this year.

Yes, indeedy-do.

Run away! Run away!!!!

I love my family. I really do. But christalmighty, they are a lot of work. And just thinking about doing the whole trip down to two different states, each of them a day’s drive from the the other, and dealing with all the sides of the family… it’s just a lot.

And that’s not even all of what’s to come, this holiday season.

There’s the shopping. The holiday foods that wreak havoc on my system. The parties. The peopling. The lights — oh, the lights — and all that music. Ugh. All the promotions and sales and BUY-BUY-BUY!!! pressure that’s non-stop, starting, oh, about next week when Halloween is over.

And I think about the Auptima Press Holiday Survival Stress Gauge – the tool I built last year to help folks like me deal with holiday stress. You can fill out the different areas and see where things are dicey for you. And then you can plan your strategies for dealing with it all.

I’m going to use that tool this year, for help and support. I’m sorta kinda on my own, here, and I need whatever help I can get. My partner hasn’t been doing very well, and I’m becoming more and more of a caretaker for her. It’s no fun, watching the love of your life, wither in front of you. It’s no fun at all. So, having an extra tool on hand that gets me out of my head (so to speak) and lets me get some emotional distance from the situation is helpful.

Unfortunately, I can’t run away from the holidays, this year. Much as I’d like to, I just can’t. I’ve got to face it all head-on, and just get on with it. Knowing what I know about myself, it’s actually feeling a bit more manageable this year, than in other years, and pro-actively managing my Autism is a big part of that.

Speaking of being pro-active, I think I’ll get some sleep.

I’ll need it.

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.

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.