Here’s a demo of my breakfast each morning — the beloved puffy egg.
First, I whip up a single egg. I melt a pat of good butter in a non-stick pan, and pour in the egg, after the butter is all melted.
I cover the little pan with a small plate or bowl.
I keep it on low heat for 5-7 minutes…
until the egg puffs up. Sometimes the egg really puffs up with all kinds of bubbles and folds. Today was more “modest”.
Then I flip the egg out of the pan onto a handy little dish (usually the one I use to cover the pan), add salt and pepper (and often some sriracha sauce), and I have my half-cup of coffee and large glass of water.
Once a year, VoxVisual does the well-nigh impossible — she visits her overwhelming family and lives to tell the tale. Autistic since birth, she’s lived in a constant state of overwhelm for as long as she can remember.
“I’m not looking for pity,” she tells us, “but it’s not easy dealing with all the chaos — especially at holiday times. I have a large immediate and extended family, and they love to stir everything up. Yelling, singing, jumping around, talking about this-that-and-the-other-thing, switching subjects without warning… and never giving me a minute’s rest. It’s exhausting! And even though I love them and need to see my family at least once a year, I dread doing it — especially during the holidays.”
What to do? In someone else’s house, on someone else’s schedule, interacting with people she normally doesn’t interact with, how does she manage it?
“It’s taken me years,” VisualVox tells us, “but I’ve finally figured it out. Of course, it helps to have an autism diagnosis that tells me plainly that I can expect to have issues with these sorts of experiences. Knowing what I now know about autism, I can plan accordingly. And that’s exactly what I’m doing. I’m preparing in advance for the onslaught. I’m rehearsing ahead of time. I love my family and want to have a good time with them, and I’m determined to find a way.”
September might seem like an early time to be thinking about the holidays — unless you’re the sort of person who gets all their presents-shopping done well in advance. But for VisualVox, it just makes sense.
“Practicing now — breaking up my daily routine a little bit — while there’s no pressure, is just the ticket for getting myself in shape. I think of the holidays as an athletic event (and it is physically and mentally challenging). I also think of the months ahead of time as my “training period”. I give myself little doses of change, of non-standard experiences, of intermittent overwhelm. Then I take some time to recover, think through the lessons, figure out what worked and what didn’t, and then have another ’round’ of challenge.”
If it sounds tiring, rest assured — it is. But it’s worth it.
Is it all work and no play, though? Not at all, according to V.
“Testing myself is only part of what I do — the other part is finding the things in my regular everyday life that I can ‘transfer’ to my family visit. For example, routine is very important to me. It’s essential. So, I repeat certain routines I have at home that make me feel comfortable and cared-for. My morning wake-up routine, for example. Every morning when I get up, I exercise before I do anything else. I ride an exercise bike. I lift some weights. And when I’ve worked up a sweat, my mind is clear and I can get on with my day. I typically have my breakfast right after that, and the day begins in earnest.
“When I visit my family, I make sure I have a good morning workout before I do anything else. And I also make sure I eat my breakfast immediately after my workout. That way, I have a good start that I know works for me — and it’s good for my family, too. Some people try to escape routine to relax and enjoy themselves. I’m the exact opposite. Routine itself helps me relax. Also, I used to be absolutely consumed by physical fitness and kinesthetics. I was fascinated by the human body, especially the muscular system. While some girls drew pictures of their favorite band’s logo, I drew pictures of the major muscle groups. Taking the time to lift a little weight actually makes me feel like I’m 16 again — and that’s always nice, especially when you’re surrounded by people who are constantly bemoaning ‘getting old’.”
Clearly, it’s different strokes for different folks. Routine is helpful?! It’s not boring? It’s actually enjoyable? How many folks groove on routine? Well, clearly at least one person does, and she revels in it.
So, this coming holiday season, prepare to be amazed as VisualVox, the #ActuallyAutistic woman makes her way through the obstacle course of the holidays with her routine intact, her nerves steady, and her family relationships sustained for yet another year!
Stay tuned for more reportage on #ActuallyAutisticAdventures! Discrete stimming that soothes the most jangled nerves… Getting safely up and down stairs despite extreme vertigo and sensory overwhelm… Tips on replying to people who talk a mile a minute in heavy accents… Feigning interest in boring stuff for people you love and care for… and more!
I’ve been thinking a lot, lately, about how fortunate I am. I’ve been kind of tangled up in all sorts of emotions about letting go of old unrealistic expectations that were very much a part of who I thought I was — or could be. I’ve always had goals, always had aspirations, but the more I think about it, the more I realize just how non-autistic so many of those goals were.
I think it’s just normal to internalize the values of society — we’re constantly being shown images of the “ideal”, constantly getting unspoken messages about how we should/should not be, constantly being redirected in subtle ways to keep us on society’s “straight and narrow”.
I also think the influences are particularly pronounced, when you’re autistic. We pick up so many cues and clues that slip by others, and we can be so strongly impacted by even the slightest nudge in a certain direction… even the faintest hint that we’re not OK… Which sets us up for ongoing bombardment, because society’s clues and cues are really designed to pressure folks who aren’t sensitive, who don’t pick up on subtle messages, and who can’t discern the gray-area differences between good/bad, right/wrong.
So, autistic folks end up bludgeoned. We really do.
Which is why I’m really, really happy that I was raised in an autistic family.
Nobody called themselves autistic, of course. It wasn’t a thing when I was growing up. Autism was a classic-Kanner deal, where you had to be severely impacted/disabled by your challenges, in order to be considered autistic. We knew of families who had autistic members — the guy who renovated our kitchen, for example. But those cases were just whispered about. Those of us who suffered intensely from environmental and sensory distress, but were able to go about our lives without being permanently disabled by all that, were considered “normal as normal can be”.
Indeed, for that time and place — in an insular religious community that was highly regimented, rules-oriented, literal, hard-working, and chock-full of physical activity that gave you ample outlets for your overabundance of energy — we were normal. Because how we were and what we were, was the norm. And our community of faith was sufficiently insulated from “the World” (capital W), that the ways of the evil outsiders never posed a danger to us.
Our autism was our creed. It was the right way to be. It was the only way to be. And anybody who wasn’t like that, was considered a minor (or major) threat. The ways of the non-autistic World were evil. Temptation. An ever-present danger that put our souls at risk. In the world where I was raised, you followed the rules. Autistic rules. Religious rules. Social rules. You didn’t deviate, on pain of expulsion. It wasn’t pathologized. If anything, NOT following the rules was pathologized.
Of course, all that pathologizing got a bit old, after a while. Especially for me. I wanted something bigger and broader than what the rules allowed. A more generous interpretation of gender. A less debilitating interpretation of what was possible for girls and women. The rules may have spared me a lot of anguish and insecurity, when I was growing up, but they also hemmed me in… in ways that were excruciating. Nearly lethal.
But let’s talk about the fun stuff, shall we? I can sit around and feel bad about the bad, or I can choose to feel good about the good. Life supplies ample amounts of both, and where I choose to concentrate is up to me.
There was a lot of good, in being raised that way. As painful as it was, as excruciating as it could be, it trained me along certain lines. And having a hyposensitive mother who was always on the lookout for the next exciting experience turned out to be a boon. Seriously, my Mom was/is like a shark… always moving, always seeking her next sensory experience, looking to fill up on the inputs of life. We did a lot, when I was growing up. Camping. Hiking. Playing. Working. Always active, always thinking, always talking. Even though it overwhelmed me constantly, and it took me years of pain and frustrationi to learn how to deal with it, now that I know how to do it, it’s an incredible gift.
My father, with his unending pontification, philosophizing, pedantry… always thinking, always talking, always convinced that his ideas were the stuff of wonder and awe, always convinced that he was on the cutting edge… His bravado (annoying as it could be at times) is something I carry with me. I’m more tempered, I think, in my suppositions of grandeur, and I do believe I have a wider base to draw from than he, who’s always operated within a fairly narrow mindset and belief structure. But that same conviction that my thoughts matter, that my insights have depth and importance, is clearly inherited from him.
My whole family was so autistic… Pick up a (credible) work on autism (preferably written by an autistic writer/researcher — Milton Damien comes to mine, along with others whose names I can’t conjure right now — or someone who’s a true ally — Luke Beardon’s latest work is a good bet)… and make a laundry list of autistic traits, and I can assign them, to most (if not all) of my biological immediate and extended family to one degree or another. I can also find those traits in my onetime neighbors and classmates, the folks who attended our church, the people I interacted with daily as a kid.
They all helped raise me. They “trained me up in the way I should go”, and that way was autistic. They raised me to be neurodivergent, and it was our most critical identity. It was our saving grace. All those rules, all those pressures, all that constantly reinforced messaging of right/wrong, on/off, acceptable/verboten… all of it spared us from the world. Our agreed-upon rules, our regulations, our religion… it buffered us and gave us a profound, unassailable sense of belonging with one another that was so powerful and enduring, it makes today’s identity politics look like capricious dabbling.
We were autistic. All of us, to one degree or another. And the ones who weren’t, were recognized as “different” and accommodated, so long as they made an attempt to comply with our ways. In a sense, I was raised in a world that was the flip-side of the neurotypical mainstream — all the autistic folks were normal, non-autistic folks were the neurodivergent ones, who were looked upon askance, not quite trusted, sometimes pitied, often excluded, and constantly pressured to become like us.
To be autistic.
Well, it’s a beautiful day, and there’s an adventure out there “with my name on it”. How’s that for an image — in my mind’s eye, I see a vast stretch of wilderness with a stickie tag on it that has my name written in dark blue marker.
Time to make that come true, and do my parents proud.
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’veusually 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 reallyget 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?
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.
I’m having a strange time at work. My group has been shuffled around into a different organization, and nobody’s sure how it’s going to turn out.
Nobody knows how anything will turn out, these days. Hurricanes. Earthquakes. Nuclear threats. It all starts to feel ho-hum, after a while, and I wonder how I’d feel if this were like 500 years ago and nobody had any idea how screwed up people on the other side of the country/world are. Would we be happier? I doubt it. People crave drama. They look for reasons to be unhappy, to make themselves feel more engaged, more alive.
But my mind is wandering. I’m already off-topic, and it’s still early in the day. I’ve got a full list of to-do items for this Saturday. But it’s worth it. After I get this stuff done, it’ll be done. And then I can just get on with my day.
It’s been a little over a year since I got an official Asperger’s assessment. It’s been a couple of years since I got back on track with managing my autistic “features”. It’s been an interesting trip, and like most folks who go through this process, it’s been full of ups and downs.
Now things are evening out, and I realize that I’m really not cut out for fighting over autism. You know… donning the righteous armor of activism and wading into the fray. I mean, it’s not cool that researchers and organizations are looking for ways to eradicate me, but to assume that they’re going to be successful is a bit of a stretch. And to assume that only direct opposition is going to stop them, is short-sighted, in my opinion.
What ever happened to good old subversion? What ever happened to individual actions and choices that undermine the hegemony of the dominant paradigm? In any case, I’m not 100% convinced that the dominant paradigm is universal, or that everybody wants to buy into it. People want to belong. Sure. That’s true. And they’ll go along with stuff that others offer them, which promises to make their lives happier, richer, sexier, etc. But there’s also an undercurrent of buried intelligence that shows up at the unlikeliest of times.
And that’s the side of people I want to deal with. Not their obvious oblivion.
That’s way too depressing. Traumatizing. Self-depleting.
So, yeah… I’m trying to figure out where I fit on this continuum of action. Maybe I don’t belong on it at all… No, I do. I just need to find the place / way that works for me — and not against me.
One of the things I feel myself letting go of, is my perpetual discomfort with the professional world. I just kind of “fell into it” by default, after I left college, because apparently I’m pretty good at the things I undertake. I’ve got my autistic focus, enthusiasm, my quirky / geeky joy at stuff that most people don’t think twice about, and my enthusiasm is “infectious” as they say. People like working with me, because I really do make an effort to be a good team member and support others in their jobs. And even though I am pretty odd at times, by conventional standards, there’s room for that in the world where I work. Heck, it’s chock-full of “odd birds” like me.
So, why have I been fighting it?
Well, because it’s part of a world that I grew up distrusting and disliking. Corporate America. Bleh! Who would want to be a part of that?! Turns out, I do. I perform very well in the structure and predictability of a corporate environment, and over the years people have really made an effort to include me and advance me. I’ve pushed them a way, though, rejected their offers, and moved from job to job for reasons I thought I understood, but really didn’t.
Turns out, it was alexithymia that was urging me to leave. I didn’t have a good or clear sense of what was going on. I couldn’t tell whether or not I should trust people. I had no clear sense of how well I was doing in my jobs, so I never knew if I was failing or succeeding. I couldn’t “read” people, either. It’s like I’ve been wandering around with a blindfold covering most of my vision and earplugs firmly inserted in my ears, bumping into stuff here and there, but somehow finding my way through… all the while having very little clear sense of where I am or where I fit or what I should do next.
God, I wish I’d figured this out sooner. Could have saved me years of confusion and frustration.
What might have been different? Well, I might have gotten to the place I am now — able to ask people for clarification, able to recognize that I’m not really persecuted at work, I’m just feeling overwhelmed, able to differentiate between actual depression and just being physically wiped out. And not stressed out and pushed to extremes by situations I can’t read.
Well, what’s done is done. At least I know now how things work with me. And I can adapt accordingly. Now I can:
Look for the good in my situation, instead of fretting about how much greener the grass will be at some other company.
Get some extra sleep and spend more time relaxing, instead of burning up all my available energy hunting high and low for the Next Big Thing.
Chill the f*ck out and enjoy myself.
Actually engage with the people I work with and put my energy into making the most of my present situation, instead of always wishing things were different.
I’ve written before about how I need to reset my expectations in life, and it’s still true. I’ve wasted so much time trying to operate like someone I’m not, and it’s burned me out. Fried me to a crisp. Ugh. Time to quit that. Just let it go. Let that go… go… go… )))))))))))
Have a little fun, for once, by God.
Yeah. Let’s try that, why don’t we?
I’m sick of wedging myself into all the unfitting forms. Time to find my fit, and go with that.
So, needless to say, I keep my distance from others. In general. Like the penguins in the picture above, hanging out away from the rest of the crowd.
Even when I am in the midst of them, I keep my distance. Some notice it, and they object. They want me to share with them… sharewith them. Why? What’s the point? What purpose would that serve? Whenever I do try to share with others, they don’t get it, generally. And they react badly. So yeah, why bother indeed?
What is it with people who want you to bare your heart and soul? Don’t get me wrong – I used to do it all the time. And I learned my lesson. Disclosure of my most vulnerable areas…
I was so excited to get my telescope to watch the eclipse a few weeks back. My life seems to be full of ups and downs, these days. Really, really UP for the eclipse… really, really down for my day-to-day life.
Here are some pictures from my recent UP time. Taken with a smartphone positioned just-so over the eyepiece of a modest telescope with a solar lens. Enjoy.
I’ve been thinking that maybe my challenges in life stem largely from alexithymia — the inability to understand how I’m feeling. I get confused a lot about whether I’m feeling happy or sad, and I often mistake exhaustion for depression. I’m not depressed. I’m just wiped out. Beat. I feel depressed — temporarily — but I’m not actually depressed.
Same thing with success and failure. I have a terrible time figuring out whether I’ve done something well or not. When in doubt, I tend to err on the side of caution and pessimism — which is really an error. Because I’m feeling down on myself over a supposed failure, when I’ve really succeeded.
Long story short, I have NO idea, most of the time, if I’ve done well for myself or not.
It’s a problem. And it makes it extremely difficult to actually gauge my abilities.
So, I’ve been training myself, for the past several years, to just “act the part” of a successful person, in those situations where I honestly have no idea whether I’ve done well or not. It’s really uncomfortable for me, but I do it anyway. Because the alternative is to succumb to despair — and also look bad in front of people who punish people who are vulnerable or whom they see in an unfavorable light.
I don’t like faking it, but I’ve got to do it. The alternative just won’t work.
I think we need a better way of understanding alexithymia — especially from the viewpoint of those affected. Just because we can’t think of ways to describe what we’re feeling in the moment, doesn’t mean we can’t put words to it later, when we’ve had a chance to think about it. This seems like a worthy exercise, since the neurotypical world deals widely in “emotional currency” — relying on emotion to orient individuals to one another…
I have time to read. I finished a book I’ve been trying to get read, now, for months. A guy on my team at work loaned it to me, and he’s been wanting to discuss it. I’ve been putting him off, feigning knowledge from the few paragraphs I skimmed over the past weeks. This weekend, I got that done. Now we can discuss it. I liked the book. It’s given me ideas. I skipped a number of parts where the author went into intense levels of detail that I couldn’t follow and didn’t care to absorb. I’m very pleased that I finished reading it, and I can discuss it with my colleague.
Now, I really dohave the day to myself.
Red. Like life. Lifeblood running through my veins. Life coursing through my day.
Uninterrupted, unsullied, untainted life — free of the limitations of the cubicle, the politics, the jockeying for position, the competing agendas, the contrasting working styles.
Untroubled by the existential risk of saying something wrong to the wrong person in the wrong way at the wrong time. Crossing lines that I don’t even see. Drifting into dangerous territory, simply because I seek honesty and truth. Being at a distinct disadvantage because I’m blind to the faces, deaf to the tones, too busy dealing with all the sensory details to attend properly to the subtleties of … whatever it is that the neurotypical folks around me deem essential at any given point in time.
I hate my job, but I love my work. If the people all disappeared or went off to fight amongst themselves in their own separate playground, that would be fine with me.
But why am I even thinking about them? Today is bright red with possibility. A high tower reaching to the sky. The clear, clear sky.
It’s time to celebrate. Time for a walk. On this quiet day, when everyone is Somewhere Else.
And I have the neighborhood — and my life — to myself.
(The development of reasoning heuristics in autism and in typical development. Morsanyi, 2010)
Given the debate around human rationality in decision-making over the last 40+ years, you’d think that psychologists and Behavioural Economists would have been scrambling over each other to dig deeper into a statement like the one above. The phrase “less susceptible to reasoning biases” goes against much of what we’ve learnt about the inherent irrationality of human behaviour since Kahneman and Tversky started getting people to gamble on coin tosses in the 70’s.
In reality, as the above paper goes on to point out, research into autistic reasoning in this context is sparse. However, there have been some studies, and autistic subjects have been tested on their response to cognitive biases such as the framing effect (choice will be effected by how information is presented), the conjunction fallacy (we think that more detail makes an event more probable whereas the reverse is true), the base rate fallacy (we favour specific information over general information), and the sunk cost fallacy (we’re influenced by how much we’ve already invested in an event or project).
I’m not sure what the hold-up is, in doing decent research about how those of us on the spectrum think differently — including how we have a certain advantage in some circumstances. But eventually, that work may get done.
In the meantime, I’ll get on with my own life and focus on my own thought process. At least that’s something I can manage.