It’s been quiet here. Very, very quiet.

November 1-15 statistics showing sharp downward trendI have not had the energy to post much of anything, in the past week, as you can see. Nor have many people stopped by to read. And now that the election results have put someone in charge who openly mocked disabled people and incited his followers to violence, to be honest, I’ve toyed with the idea of going back to my moniker “Aspie Under Your Radar”.

I’ve been worried. Deeply, deeply worried, about the potential impact to myself and the world I live in — especially the most vulnerable. And I can’t help but find parallels between what’s happening here now, and what happened in Germany, back in in the 1930s.

I have a hard time believing we will sink to the depths of a Nazi 2.0 society, ourselves. But I also have a hard time believing we’ll escape that same fate.

Then again, part of me feels like we’ve actually always been in a borderline fascist society in these United States, and that these problems that are cropping up in plain view are really nothing new. In fact, it’s surprisingly similar to the world I grew up in. So, I already have experience dealing with it.

For days after the election, I was wreathed in the smoke and mirrors of political intrigue, dismay, depression, and a host of other deeply felt concerns… much of it fueled by Facebook, which is where I re-connected with a lot of my friends who are on the same wavelength as me. And I realize yet again, why I stay off Facebook — it took such a toll on me. I was getting too caught up in the whirlwind of that shocker of a result. Plus, I wasn’t taking good care of myself. And I was spinning — wildly in circles — caught up in the spin-cycle of cultural dismay… all of which just knocked the stuffing out of me.

The worst and most taxing thing of all, has been the utter lack of logic to this whole political scene. The arguments for/against each candidate are steeped in bias and misinformation, and precious little reality – no matter how you slice it. Lack of nuance. Lack of sophistication. Lack of compassion – for anyone who doesn’t agree with you. All the platitudes and fear-mongering and one-dimensional picking of sides that just pushes away everyone else who doesn’t agree with all of your points. People usually have their own reasons for doing things, which you cannot begin to understand, because you’ve never lived their life.

There’s been no balanced discussion. There’s been no give-and-take, other than ideological Molotov cocktails lobbed over the barbed-wire mental barriers we’ve erected around ourselves.

THAT inability to see other sides is what got us into this situation. Not just one candidate. Not just one election. This divide, this oversimplification, this refusal to admit that others may have a point, combined with this lust for armed conflict, has been building for years and years. This is not new. It’s how we roll, in this country. We just have a Bigger And Badder case of it, right now. For some people, nothing has really changed. For others, they’re now forced to look at things that they’re accustomed to not considering. At all. Only time will tell, whether anything actually ever changes as a result of this. But I’m not holding my breath.

Instead, I’m taking action. I’m doing something constructive. I’m pouring my energy into positive things that are intended to deliberately help others. Because really, that’s the only thing that really matters to me, right now. Helping others who need help.  No matter how they voted. Everybody’s got to manage their own corner of the universe and do what they can to make things better. I’m doing what I can.

How ’bout you?

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I can’t fix this for you and I can’t tell you what you want to hear.

This. Every . Single . Word .

Chavisory's Notebook

This is to anyone who has ever, ever said to me “You could rule the world if you really wanted to!” who voted for or in any way enabled what happened this week.

I am pretty sure that this statement has never meant anything but a combination of “I have no actual clue either how the political world works, or who you really are,” and “I just want you to fix everything for me without me having to take seriously a single thing you say.”

And I am tired of your excuses and I am tired of you not taking responsibility for your world, and no, I cannot help you now.

Likewise, I never want to be told, ever again, “But you’re the smartest person I know!” or “You’re the most articulate person I know!” by anyone who is not prepared to listen to anything I have to say…

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person jumping off a train in a foggy night

The freight train brain

I can relate to a lot in this post.

the silent wave

Biochemistry exhilarates me.  I have spent entire workdays solely investigating Lysine metabolism.  I’ve spent two and a half years (and counting) researching branched-chain amino acid metabolism.  It makes my soul sing inside.

Even before I knew I was an Aspie, I called my “research” “diving down deep”.  That was my term for it.  It was–and remains–on my short-list of favorite activities.  I would close my office door, the unquestionable signal NOT to attempt to get my attention.  Even my staff half-jokingly found the following meme:

are-you-on-fire

“Are you on fire?” Then, in flowchart fashion, it proceeds to split “No” from “Yes”.  If “No”: “I’m busy.”  If “Yes”: “Then put yourself out and wait patiently, I’m still busy.”

We got a good belly laugh from it, but we were also well aware of its pinpoint accuracy.  They printed it out, stuck it in a page protector, and taped it to my door…

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My ever-changing #autistic energy levels

waves on a beach
Just gotta roll with the changing tides

I had a wonderful time with my old co-workers last night! It was So Great to see them again, and the place we were in was not horribly overwhelming for me. It was a Mexican restaurant, with loud Mexican / Spanish-speaking music playing, at least six massive t.v.s all displaying different shows above the bar, and a fair amount of hubub.

But it wasn’t bad, actually. I was expecting a huge sensory onslaught that would wipe me out, but we sat in a small private alcove with walls that cut the noise, where I could face the group and not have to see the t.v.s. It was a small group, too — seven of us, arranged around a single table, taking times talking about our lives and what was “up” with us.

I love those guys (and gal)! They were my tribe for years, and we all agreed that the  years we worked together were the best years of our careers. (Hey – that rhymes!) And we parted ways after a couple of hours agreeing to do that more often. We’re all local, and we love to spend time with each other, so we must do that again.

I knew it was going to take a lot out of me, so I took it easy during the day. And I postponed the errand I planned to do while on my way to the restaurant, so I could focus on getting there. I almost made it without a hitch, too, until I got in the wrong lane and took a left that shot me straight from the center of Boston to the center of Cambridge. I was stuck on 93 North (gah!), and there were no exits to get me out of there, till I was on the other side of the Charles. At least this time I didn’t get stuck crossing the Tobin Bridge, which has happened to me before.  I just kept cool and kept going. Turned around on some back streets. Got back on 93 South, and 15 minutes and a bunch of turns later, I was walking into the restaurant, none the worse for wear.

That was pretty demanding, I have to say. I was tired from a full day, and it was dark. I freaked out a little bit, when I realized I was headed into the 93 North underground tunnel, with no chance of turning around. And I was a bit of a frantic, anxious mess while I was chugging along, looking for an exit… and coming out (in the dark) in a part of Cambridge I faintly recognized, but didn’t. I managed to gather my wits, hooked up my narrating navigator, and the GPS guided me back to where I needed to be. Emotionally and energetically, I was all over the place, and I could practically feel my “autistic battery” draining as I drove.

But I stayed on course, I kept focused on where I was going and what I was doing, and I didn’t worry about getting there 6 minutes later than I said I would. I had already told them I’d get there closer to 6:30, and it was 6:17 when I found myself on the wrong side of the Charles River, so I still had time.

And I made it. And I had a wonderful time. And I’m going to do it again.

It took a lot out of me, but it didn’t wreck my evening. I managed to keep my focus on the present, and really concentrated on the positives of that evening. I could have easily gotten down on myself for having gotten turned around, but I cut myself a break and treated it as a valuable learning experience, which it really was. Now I know how to turn around and get back in the direction I need to go, when I get turned around in Cambridge. I haven’t driven much in that part of the world, although I’ve walked around a fair amount. And I also needed to practice keeping my cool under pressure — at the end of a long day.

Earlier that day, I was talking with another Aspie about the distinction I make between demanding experiences and disruptive experiences. I don’t tend to see them as the same thing, actually. There are times when the demands on my time, energy, resources, and ability to cope spike WAAAAY up. And sometimes that spike is very disruptive for me. Like, when I realize that I’ve taken a wrong turn, and I’m headed in the exact opposite direction of where I intended (that happens surprisingly often, actually) AND I freak out about it.

Dealing with the wrong turn is the demanding thing for me. The freak-out is the disruptive thing for me. And the two don’t necessarily need to go hand-in-hand. Yes, it is disruptive for my schedule and timetable and plans to be shifted against my will, but it happens so often, it’s almost like it’s just a regular thing. It’s like my life has been so variable for so, so long, that disruption doesn’t feel like disruption. It just feels like another wave of change coming — and if I can just roll with it, I’m good.

I’ve definitely mellowed a lot in recent years — especially since going through menopause — and the changes in my life are a lot less disruptive for me, than they used to be. It’s like the old clear “baseline” demarcation of right/wrong, correct/incorrect has blurred to the point of non-existence for me, and constant change is the new baseline for me. Or maybe there IS no baseline, anymore. Dunno. All I know is, while things are totally demanding for me (I’m pretty wiped out today from the excitement last night), it doesn’t throw me the way it used to.

Because that’s just how it is. A constantly moving needle. A continuously shifting baseline. A continuously shifting roll of waves on the beach, each set of waves creating a different set of lines in the sand, then the next one washing the old lines away.

That’s how I like to think of my life. It’s completely disruptive in every sense of the word, which is difficult to accept at times. But if I can just imagine I’m at the beach, or riding the waves, somehow that helps. Then again, sometimes I haven’t got the time or energy to imagine anything except getting where I’m going. And I have to stay present. Or I suffer a lot more than I like.

And who wants that?

Planning for the onslaught

prancing colt animation
I’m so excited! I’m so excited!

Time to gear up for the day. Woo hoo!

I’ve got a “busy sandwich” day today. Which is to say that I’m busy-busy in the morning (half of it painful stuff, half of it gloriously wonderful self-directed stuff), then a lull, then a flurry of busy-ness in the evening.

I’m meeting with a coach who’s helping me with a number of life challenges, right now — she’s really great, but she doesn’t get the whole autism / Asperger’s thing. And whenever I talk about the mitigating autistic factors of my life, she glosses over them and insists it’s my “attitude” that’s causing me issues. It sounds infuriating (and when I’m tired and in a bad space, it is). But now it’s just amusing to me. Diagnostic. She’s highly trained and very intelligent, and she can’t see the autism that’s sitting right across from her. Ha. OMG. It’s too classic.

I’m never going to press the issue with her, however, because — get this — HIPAA rules may be changing in the USA, which means that anything she writes down in her notes will be available to others. And many of the “others” she deals with are pill-happy … and I’m just not going there, for a whole bunch of reasons that have more to do with my sensory issues and not being able to accurately describe my symptoms, than the innate efficacy of the meds (for the right people in the right circumstances). I have to keep things pretty chilled out around her, so she doesn’t put “autism” in her notes. Good God Almighty, if that happens, the insurance companies will grab their pitchforks. ‘Cause you know, that’s how we roll in these United States of Amurica.

So, there’s some stress there.

And then I’m off to have dinner with the old gang — the troop of folks I worked with, back in the day, when the Web was young and we were building it from the ground up, for the first time, ever. These are the folks who welcomed me in, who made me feel at home, who were my tribe. They’re also the ones who pointed me towards that first Aspie Quiz and nodded in recognition when I told them my scores.

They kicked off this journey for me… which went from being an “Oh fine, I’ll take the danged quiz”… to “Oh, that’s interesting”… to “Holy crap – that IS me!”… to years and years of self-exploration, research (such as was possible in the late 1990s before people knew jack sh*t about this Aspergers / autism stuff), and the eventual realization — borne out by my excellent memory of early childhood events and experiences — that Yeah, I’m squarely on the spectrum.

These are the people — the kind, accepting, supportive people — who saw talents and abilities in me that I couldn’t see for myself. Who always made room for me. Who thought I was hilarious and who freely conceded that I always had the best stories of anyone in the room. Hands down. I live a daily adventure, and no doubt about it.

I’m so looking forward to dinner.

Of course, it’s going to take a lot out of me. And I’m going to be wiped out for days to come. But I really don’t care. It’s worth it to me. It’s worth every bit of exhaustion and shut-down I may experience in the coming days.

At least I’m prepared. That’s about the best thing I can do for myself — or expect from myself.

🙂

Sharing from LiveOtherwise: What Autism is

To me.

(I can’t define it for anyone else. And if you don’t experience it, you do NOT get to define it for us or to draw us as suffering monsters. If you could refrain from that, that would be nice?)

Back to me.

Actually I think you *can* see it in my face. It’s that little worry line between my eyes. Having to concentrate really hard, and still not quite getting it.

It’s a lack of confidence, constantly at war with the single minded focus on an interest. At the moment my interest is art, and objectively I can see I am improving, but I crave external feedback as well, and I want to be the best.

Numbers, stats, rankings, they’ve been an obsession on and off for as long as I can remember, fed by the unhealthy actions of the educational system that didn’t quite know what to do with me.

Read the rest of this great post here: What Autism is

How to get an Asperger’s/autism diagnosis in the US without potential “issues”…

Great tips! Might come in handy for someone, someday.

the silent wave

Some of you may be thinking, “cognitive dissonance much?  A month ago you were warning us not to get a diagnosis in the US, and now you’ve gone and gotten one!”

I know.  It looks strange, at first glance.

I’ll explain…

Yes, the potential threats I described last month are real.  That hasn’t changed.  Nor have I had a change of heart, suddenly deciding that the threats aren’t so dire after all (they could certainly still be).

So why and how did I do it, and what options does one have if they’re an American seeking diagnosis?

There are two possible options that I know of…

The first option is to go outside the US.  I do still plan to do this when my suddenly-bleak financial situation improves.  (I was going to get two opinions at once, but then realized that money was tighter than I thought and had…

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“Shutdown” — what it is and what it isn’t.

Great post! I can so relate.

Crabby Centaur

When I shut down, it is like I am becoming ill with the flu. I feel achy, extremely tired, I need to be in a quiet dark room immediately, my executive functioning stops, my body becomes frozen/very still, and communication becomes difficult or non-existent. If this happens when I am out of the house (which is the usual way of things), then I need to get a taxi home immediately and actually need somebody else to call that taxi for me and pay for it if I don’t have any money on me. Shutdown completely disables me.

There are stages leading up to shutdown where my movements become slow, I struggle making basic decisions, and I sit and stare at inanimate objects as I try to muster up the energy to get myself into a safe space.

When I shutdown it usually relates to one of three things: too much…

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The cognitive dissonance of “person-first” references to #autistic people

two people arguing, face-to-face, pointing fingers at each other
What you call us matters. Please choose your words mindfully.

There seems to be a persistent tendency for people to use “person-first” references to autistic people.

That’s unfortunate. I’m sure the intention is to affirm the humanity of the person (separate from the disorder/condition), which I suppose is noble in its own way.

But what it really does is make us autistic folks out to be “suffering” from something that — if only it were eradicated and removed from us — would restore us to wholeness. Make us just like everyone else.

I’ll spare you my rant about that. Let me use another means to illustrate how person-first autism language makes me feel, as someone who considers autism my default mode, and who would be made less-whole, not more, if “it” were removed from my self.

Identity is a tricky business. We all have our perceptions of ourselves, our understandings of what makes us US. That goes for everyone.

Now, how’s about we do a little experiment with person-first language for neurotypical identities…

A man is not a “man” — he’s a person with maleness.

A white man is not a “white man” — he’s a person with the “co-morbid” conditions of maleness and whiteness.

A woman is not a “woman” — she’s a person with femininity (well, supposedly, anyway – depends how you define “femininity”).

An American is a person with Americanism — actually, that apparently only applies to half of us, since the other half seem determined to trash our core values and plunge us into despotic, xenophobic fascism.

A Canadian is a person with Canadianism. I believe that’s more reliable than the “with Americanism” assignation.

See what I’m getting at?

When you excise a core defining feature of a person’s identity from their living, breathing self, you sort of objectify them a bit. And you make that core defining feature optional. Because it can be safely removed, and they’re still a person. Right? Well, a person, yes — but not the sort of person they know themselves to be. And not the sort of person you can truly get to know. Because you’ve denied one of the main characteristics of their nature, out of an intention to be … compassionate? Dunno. Or maybe sensitive?

Whatever the original intention, the effect is just a bit dehumanizing. And a lot of us don’t like it.

So, if you’re into PFL – person-first language – please reconsider before you use it regarding autism. Cancer is one thing. Plaque psoriasis is another. Autism… well, that’s in a league all its own. And I wouldn’t leave that domain for all the money (or well-intended compassion) in the world.

(For me,) #AutismIs (Autism is…)

“YES!!!!’ to all of this!

the silent wave

… missing things other people see, and seeing things other people miss

… both a disability and a superpower

… often being able to accomplish the extraordinary, but not always being able to accomplish the ordinary

… a sea of misconceptions (from others) and underlying truths (within myself)

… an elegantly simple explanation for every seemingly-miscellaneous quirk, wrapped up in a suspiciously neat package

… the newfound instruction manual to/of my life

… a different ability (there are things I can’t do at all, things I can’t do on some days, things I can only do with extra effort, and things I can do better, with less effort)

… an invisible disability (on some days)

… the one (accurate) label no one (including myself) had ever considered

… loving being at a fairgrounds but despising the mall

… why I can zero in on people’s feelings but not their thoughts

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