safe

I did not realize it until I was in my early forties, but I do not enjoy fireworks. There is nothing about the experience that is pleasant to me in any way. While others may delight in the celebratory aspect and the beautiful, powerful displays, I am in my own private hell for the duration of the experience.

The only thing I do like about it is that it’s in July, which is the only month of the year during which I can be guaranteed not to have to bring a wrap or jacket or something wherever I go to stay warm. (Other than in grocery stores, jesus, why are they always so damned cold?)

The rest of the ordeal seems perfectly designed to be as unpleasant for an autistic person as possible. You are surrounded by people on all sides, and in order to get that “coveted” spot you have to have gotten there at least a couple of hours ahead of time, and that’s two-plus hours of small talk and “enjoying one another’s company,” when I’m only up for about an hour and a half under the best of circumstances.

When the fireworks finally start, by which point I’m thoroughly frazzled, the noise is horrific. Even from a mile away, it is far too loud. Up close, it’s unbearable, even with my ears plugged. It feels as though my whole body is going to break apart. And, there are a limited number of types of rockets. Once I’ve seen them all, I’m done, let’s get out of here before I grind my teeth to powder. Unfortunately, the show is usually only about halfway over at that point.

The grand finale obliterates all previous definitions of overwhelming. It’s too long, there are too many at once, and the sound is intolerable.

Once I’ve sat (or stood, worse) through this torment, and am mentally and physically exhausted, I am subjected to the sublime pleasure of being crammed inside a mass of slow-moving, sweaty, overly-scented humanity for another half hour (or more) as we make our way out. And heaven forbid I have to use the facilities, because going into one of those overheated, germ-infested, plastic torture chambers even for a few seconds is another situation I’d prefer to avoid at all costs, no matter if it means a trip to the emergency room for a ruptured bladder.

This year, I’m living close enough to downtown that I could watch the fireworks from my front deck. Which I did. Suddenly stripped of their unpleasant trappings, I was able to enjoy them in way I hadn’t since I was a child. They were so far away that some of the lower ones were blocked by trees, and I still had to plug my ears for the finale, but the fact that I could go back into my apartment at any time more than made up for it.

Escape. I could escape. I wasn’t stuck there as part of a group, a half a mile or more from the car, surrounded on all sides by other people as far as I could see.

When people talk about the experiences of those of us on the spectrum, it tends to be about the experience itself. The movie. The restaurant. The soccer game. School. It can sometimes fail to take into account context. Context, safety, security, these are critical. To me, they are far more important than the event itself.

I will join you for this or that, but I have to drive myself. I will take part in something, but only if I’m able to leave early if I have to. I can go to a movie but I have to have an empty seat beside me, and a blanket because I always get cold. I can go to a restaurant but there can’t be a TV in my line of sight. I can go to my niece’s soccer game but I need to know what to bring (Are there bleachers? Do I need a chair or blanket? Do I need to bring my own water?), how long it is, how far I will have to walk. Some of the most stressful things I’ve participated in were stressful because of the uncertainty; I didn’t know what was expected of me, and I didn’t know what I would do if I was overwhelmed.

I have to be able to prepare myself. Even with medication, for which I am extraordinarily thankful, my anxiety remains on a hair trigger. I have found, though, that I can do just about anything as long as I know what it is going to be like beforehand.

This is useful information, I think, for parents of kids like me. I wasn’t a huge fan of new restaurants as a kid because I wasn’t always sure there would be something there I could eat. When we went out for breakfast, my mom had to keep a bottle of genuine maple syrup in her purse because I refused to put the fake stuff on my pancakes. Whenever I order a sundae, I have to be able to stipulate that they don’t put whipped cream on it. The idea that I might have to interact with the whipped cream in any fashion at all, even to remove it, remains distasteful, to this day.

All of these little, seemingly minor, unimportant things, are of huge importance to me. My life is very much like having to walk too close to a wall with spikes sticking out of it, all the time. If I feel like I’m penned in too close to that wall, that I don’t have room to avoid the spikes, I completely lose sight of whatever it is I’m supposed to be doing. All I can see are the sharp edges coming at me.

Am I better than I was when I was younger at walking through these experiences? Of course. Sometimes, I can even get myself to a place where I understand that the spikes aren’t real.

But not always. So best thing to do is to make sure I have room to step away. This is what I’ve always needed, a little extra room, a little extra understanding. That’s what many of us ASD kids need, I think, to know we don’t have to watch this thing, touch this thing, eat this thing, if we feel like we can’t. It must seem strange to neurotypicals in a way; probably, most people take that for granted. Of course you don’t have to touch something you don’t want to touch! Why would you? But I feel so out of my depth in social situations that often, I don’t understand that it’s OK to say no.

A few years back, I was in a Palestrina choir that would pair up with the choir from an Episcopal church for Easter. Choir members were expected to take communion wafers and wine with the congregation. The idea of putting my mouth on that same wine cup that had been sipped from by dozens of other people made my stomach crumple into knots. I simply crossed my hands and put them up to block my face, as I had been told that this was the appropriate way to refuse it.

The pastor started bumping the cup against my hands, not understanding.

A soprano sitting next me hissed, not quietly, “She doesn’t want it,” and the pastor moved on.

I could have kissed her.

But not on the mouth.

Posted in Book Two - Mind, Setting 1 | Tagged , , , , | 1 Comment

gulled

hands over face
unsplash-logoRyoji Iwata

When people talk about autism, they talk about developmental milestones, cognitive- versus non-cognitive impairments, low and high functioning, language and social deficits. Specifically in regards to Asperger’s, the lion’s share tends to be social challenges, executive function, and theory of mind. The impediments we have, the inability to prioritize information or to interpret subtle cues conveyed through eye contact, facial expression, and body language, are nearly always placed in these contexts.

However, the susceptibility to manipulation is rarely mentioned.

Neurotypicals (NTs) start learning how to gauge trustworthiness at a very young age. But we autistics don’t; we can’t. We are unable to see the signs that are so obvious to others. We are gullible, momentary, and reactive. We do not know what to look for, often cannot see it even if we do, and do not know which bits of data that don’t fit are important, because to us, human beings are universally contrary, perpetually maddening complexes of conflicting information. We go one of two ways, depending largely on our most recent experience; we either trust everyone or no-one. If a certain person has taken advantage of us, then the next interaction – with anyone – is approached with suspicion. Most of the time, however, we lack the capacity to decide and are forced to apply the all-or-nothing emotional management we are saddled with to external circumstances as well. In my case, I simply trust everyone.

I did not know I was different until a few years ago, and I am personally uncomfortable with any sort of subterfuge. My inability to apply theory of mind means I cannot imagine how anyone else would be comfortable with it either. Growing up, I would be completely taken aback to discover when someone I thought was a friend was in fact taking advantage of me and disparaging me behind my back. I have always been, and may always be, an easy mark. I wound up in a damaging relationship with a man with sociopathic tendencies for three years because I always believed what he told me. It was only when faced with incontrovertible evidence of his poor behavior in real time that I was able, crushed and humiliated, to leave him.

My sensors, even after all of this time, are blunt and inaccurate. I have learned to swallow my pride and enlist the assistance of a few trusted companions in gauging the verisimilitude of other people with whom I interact, if possible. A lot of times, however, it isn’t possible. I am left to my own spectacularly inadequate devices.

I was recently offered a remote telework position by a scam artist posing as a representative for a real company. In retrospect, I can see the holes in the construct, but at the time no alarm bells rang. It was not until he requested I start using my own money to purchase equipment that I realized I was being taken in and extricated myself, fortunately before any real damage had been done.

In this case, I was lucky in that all of our interactions were conducted over internet messaging. I did not have to worry about my own facial expression and tone of voice, and was able to apply all of my faculties to examination of the information coming in, alignment of it against well-known signals of internet scams, and the making of calculated decisions about its legitimacy. I had already built up some suspicion by the time my own money was being requested, and was thus able to shut it down without endangering my identity or funds.

But it reminded me that when it comes to most interactions, my skill set will always lack a few key tools. While I have learned – the hard way, thanks to the sociopathic former boyfriend – not to trust men in social contexts, my ability to gauge trustworthiness in other situations is handicapped by my inability to detect normal indications of manipulative behavior. A couple of years ago, I stayed at a job with a narcissistic manager because even though his behavior was clearly out of line (among other things, he used to eavesdrop on his employees using the phones’ intercom system and no, I am not making that up), I did not think anything was amiss while I was in the middle of it.

I’m still stunned by bad actors. It’s demoralizing and frightening. While I have put together checklists to try to stay ahead of it, the most important items on the list being consistency and follow-through, I can still be taken in quite easily by a sophisticated manipulator. It’s one of the reasons I never answer my cell phone if it’s a number I don’t recognize. Listening to voice mail allows me time to consider what’s being said and, if necessary, run it by someone else. But in real time, I have to expend all my mental energy on my own half of the conversation; I don’t have any left over for analysis of the other end.

I despair of ever getting any better. This is one situation where my coping mechanisms cannot provide any useful workarounds. I think one of the reasons I’m so terrified of remaining single is that I need an intuitive partner to help keep an eye out for potential dangers. And despite my tacit knowledge of my own limitations, I’m nonetheless overcome with shame and self-loathing when I discover I’ve been taken advantage of. Even though there was no way I could have known it was happening, I always feel I should have been more cautious.

But I don’t want to be. I don’t want to go through life distrustfully, skepticizing every situation, holding everyone at arm’s length. It’s hard enough to do what I already do with regards to managing my own persona so as to appear normal to other people. Where is the mental energy, not to mention wherewithal, to discern their possible motives supposed to come from?

I wish I knew.

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fun

I am not spontaneous. I cannot pack a bag and fly off to Europe tomorrow, or up and go to the beach on an hour’s notice. I do not impulsively engage in crazy activities with my pals that turn into shareable moments on social media. The very thought of such things is terrifying and if dragged into them, as I have sometimes allowed myself to be for fear of ruining someone else’s fun, I am plagued with anxiety throughout, do not enjoy them in the least, and need extra time afterwards to recover from something everyone else found refreshing and worth the loss of a weekend.

This occurred to me while I was watching a show where a couple spontaneously has sex on a floor with wet paint, ruining their clothes and shoes in the process. Yep, that’s right, I’m not thinking, Oh, how romantic, but, I’ll never get this off these boots and I really love these boots and what about my hair and what if paint winds up in my mouth and it will be under my fingernails for days… and, well, to say that I wouldn’t be in the moment probably belabors the point. (I did notice, however, that there was no paint in the bed or in anyone’s hair in the next scene. I guess they took a shower or something?)

When I “spontaneously” decide to do something, it means I have spent lots of time researching, planning, imagining possible hitches and how to respond to them, and sometimes even rehearsing what I’m going to say and do prior to the actual event. By now, my ability to appear spontaneous is plenty good enough to slide past people who wouldn’t imagine otherwise (or don’t care).

This allows me to have the “fun” of spontaneous activities without the agitation that comes from being roped into one unprepared. Most neurotypical people have no problem going along with a friend’s idea to drive two states over just to go to a White Castle on a Saturday night. Meanwhile, I’ve already checked that the weather will be nice enough for a long drive, figured out the route, selected possible pit stops, made sure not to drink too much coffee that day, and gotten together with people at such a time so that when I “spontaneously” suggest it we’ll have time to get there, eat, and get back home before midnight. And then I’ll even volunteer to drive! Aren’t I fun?

If all this sounds like an awful lot of work for a fun night, well, there you go. When back in high school a whole bunch of us decided to run around the sewer system one summer night without flashlights (or cell phones; this was before cell phones), I was the kid who worriedly pointed out that we were going to be on the front page of the newspaper the following day when we all drowned. What a delightful companion.

Unfortunately for me and others on the autism spectrum, if something isn’t familiar or planned along with options for multiple contingencies, fun doesn’t happen. Stress happens. Anxiety happens. Worst of all, we lose rest and sleep (not the same thing) and I don’t know about other autistic people, but if I get less than eight hours of sleep two nights in a row, forget it, I am about as useful as a clogged toilet (and about as much fun).

My other idea of fun is to sit around and do something I’ve done a hundred times before because I’m good at it. Usually it’s a solitary activity like a word game on my iPad, or, if I’m feeling adventurous, coloring with my thirty-six different colored pencils (in a special canvas pouch with slots for each one, arranged by color) in a relaxation coloring book. As a kid I kept my legos in ziplocs arranged by size and color. My sister thought this was ridiculous and just threw everything in the bucket together after she played with them. I couldn’t play with them again until I’d separated them all back into little piles. Because I needed to know exactly what I was working with before I started. Whee.

I can’t start if I don’t know where I’ll finish.  I can’t allow myself to be carried along. I can’t have faith that I’ll get what I need on the way. I have to bring everything, plan for everything, hang on to everything; I have to be (figuratively as well as literally) in the driver’s seat.

When someone is navigating while I’m driving, I want to know not just what the next turn is, but the one after that so I can prepare. Is there more than one lane? Do I need to be in a particular lane? Will I have time to change lanes? How many lights are there until it happens? Does this lane end before I have to turn?  Although I’ve been driving for nearly thirty years, I don’t want to have to improvise while following instructions because I can’t do both at once and it takes time for me to mentally switch between one and the other. And, I have no sense of direction. When I turn, the whole world turns with me. Which way was I facing a second ago? Which way am I facing now relative to then? No clue.

What I’m good at, luckily, is memorizing and reversing long lists of instructions, so I get around pretty well.  (Much better, now that there’s GPS.)  Like the rest of my “normal” appearance, my extracurricular functioning is an elaborate construction of workarounds and mechanisms. TGA is so nice to everybody. It’s great how she treats everyone the same way. What seems an exertion is actually a shortcut – since I don’t know what the finer gradations are, everybody gets the exact same thing; janitor, server, doctor, kid at the bus stop, guy standing behind me in the checkout line.  If I had to spend the time to figure out the precise combination of friendliness and politeness required for each interaction, it would be so overwhelming I’d never leave the house.

Even though, to be honest, most days I’d rather not leave the house, logistically speaking, that just isn’t practical. So I reserve all of my R&D energy for my “fun” stuff. Activities and experiences are carefully catalogued and cross-referenced, in detail, according to time, place, event, and type of companion[s].

The main drawback is I’m lonely more often than I should be, all things considered. Most group interactions require so much concentration that I can’t engage in any meaningful way. I’m lonely at home, lonely at work, and lonely at gatherings. I can’t simply go out and enjoy people’s company. Happy hour? Neighborhood barbecue? Birthday party? I scrounge for as many details as I can ahead of time and then make sure to either bring someone I know with me or strategically arrive when my friends are already there.  I have to minimize unexpected events and new person interactions, of which I can only manage one or two during any given outing. I have perfected the art of “putting in an appearance.”  It’s all I ever do.

Play a game I’ve never played before? You mean learn something new while still concentrating on behaving and speaking properly in a recreational group setting? You have got to be kidding. When I hear the word “icebreaker” I want to break something over the person’s head. My idea of breaking the ice is making one tiny crack in one person once every few weeks and after two years I’ll have three friends.

While I imagine there are plenty of introverts out there who share the same warm feelings for parties and icebreakers that I do, generally speaking, we are a culture of gregarious, improvisational, adventurous people. I am a cautious, overwrought turtle in a world of ecstatic rabbits. I am not going to win the race. I don’t want to be in a race.  I don’t want to turn something into a race “for fun” because it just makes it more complicated.

When everyone gets together for a pick-up softball game, I offer to keep score; that is, sit in one place the whole time and only concentrate on whomever is next to me on the bench and a small set of numbers. When I go on a spur-of-the-moment weekend trip with some women friends, I pack a first aid kit, sewing kit, bobby pins, safety pins, tampons, baby wipes, and an extra pair of one-size-fits-all black leggings along with my own necessities. (And a portable white noise machine with a battery backup in case we lose power. People look at me funny sometimes but I ignore them. Sleep is more important.)

I don’t remember becoming like this. But I imagine that with each trip, each activity, a new item was found to have to plan for, so that now, even a short vacation requires a full suitcase. When my best friend drove down to see me for a day from New York with nothing but deodorant, a toothbrush and a change of underwear, I was awed. That is so not me. It will never be me. The thought of it was enticing, but also horrifying. Only one pair of underwear? What if she needed another? What if the deodorant broke in her bag? What if the weather changed and she was cold? Where do you put the toothbrush after it’s gotten wet?

But I do know that as ridiculous and burdening as this all sounds, it has, in a strange sort of way, set me free. Of all those unpleasant experiences that I was cajoled into, some are now able to be enjoyed since having been gotten through and logged. It may be that I can only relax into something I’ve planned for, but even the planning has been done so often and for so many things that it’s a routine of its own.  I have lists of what to pack for different vacation lengths to different types of places such that my turnaround time is fast enough to suit a last minute timeline; I know exactly what to wear if it’s going to be in the 40’s all the way up to the 90’s (anything outside that range does not qualify as a vacation; extra planning will be required). These lists have everything from mascara to phone chargers and include taking out the trash and setting up the furballs with some extra chow before I go. My meds are memorized, as are my snacks (do NOT talk to me when I’m hungry). My favorite jewelry and hair ties are kept in a different place than the rest so I can just dump them in a ziploc [sic] and tuck them into the suitcase. My travel set of toiletries is never unpacked.

Except the toothbrush. So it can dry.

Posted in Book Two - Mind, Setting 1 | Tagged , , , , , , | 4 Comments

autism and depression

Phenomenal post about how Aspies interface with depression in unique ways:

People with Aspergers syndrome may experience depression differently

Posted in Aspect IV | Tagged | Leave a comment

supposed

I have run out of energy. Again. Just like I did this time last year when they changed my schedule and switched my days off. Except – I don’t have that excuse this time. But I called out of work this past Friday, and three days of rest later I’m not much better.

Every so often, I have been laid low by a mono-like illness with no clinical signs other than extreme fatigue that does not respond to rest and takes about two months to run its course.  It matches the symptoms of chronic fatigue syndrome, only it presents only episodically.  I’ve caught on to how my body presages it, though, so staying home from work this time is my attempt to keep from having to leave for months, instead of just a day or two. The technique worked last year, so I’m hoping it works again.

But reasons for my predicament are harder to come by this time. I ran myself pretty ragged back in December and January, but I’ve since been getting a good night’s sleep and decent nutrition. The thirty-day lag time preceding onset is suspicious. I mean, here I am, relatively healthy, decently-rested, my pain largely under control, and it still crept up on me, and dragged me under like a concrete weight lashed to my waist.

I keep trying to be normal. I keep trying to make the exceptions I need to make to function as a normal, healthy person, a neurotypical person, a physiotypical person. And, clearly, I am not, and it’s the most frustrating exercise, because I can manage it, if I’m firing on all cylinders, if it’s an ideal environment, often for months at a time. But ask just a little bit more of my body, my mind, and I break apart like a jenga tower after the last critical bone is pulled. Only unlike the tower, I can’t lose a whole bunch of them before I topple. It takes perhaps one or two and I hit a wall.

There’s no place in society for someone like me, straddling the line between abled and disabled. I’m not compromised enough to be truly incapacitated, but I’m not functional enough to hold up under the typical, 40-hour-per-week system. And I hate it. Hate, hate, hate. Where do I fit? What do I do? How do I eke out an independent existence in this lonely grey area so few inhabit that to most people, it doesn’t exist? I’m so done with having to be a third type, find a third way. Not well, not handicapped, but somewhere in between.

Is it awful to say that I miss the pain, sometimes? Because as horrific as it was, it provided a clarity that I long for. The pain was so extreme that it extinguished any possibility of a normal job, a normal life.

Now I’m faced with trying to find a job that not only isn’t physically taxing, but can involve working from home so I can manage my energy limitations, and that I will be able to perform despite being functionally autistic.

Even my autism isn’t complete. It’s so awful to say, isn’t it? Because I’m sure that no-one else goes around complaining that they’re not fully autistic. But I’ve had it for so long and hide it so well that I could go through the rest of my working life without telling someone and it likely wouldn’t matter at all. I’d just be labeled quirky or eccentric. Or better yet, blunt. And no-one has any idea the mental drain it places on me to put up that neurotypical front. And even if they do, they just don’t understand it.

No-one gets it, what it’s like to have to expend half again as much energy to process and perform things that come to them automatically. I wish nothing more than for someone to spend a day inside my head, with the constant turning over of different responses, actions, facial expressions, predictions, the angst, the anxiety, the worry over whether I look right or sound right, in order to seem as seamless as they. I can’t speak the way they do, can’t hear the way they do.

And I miss so, so much. You know what I miss the most? Awe. Neurotypicals have such easy access to awe. Their ability to relate, their facility with theory of mind, means all they have to do is see it in someone else to experience it themselves. I have no such conduit. Maybe it’s a good thing; maybe it would be too taxing for me, with my energy insufficiencies, to be able to slide into someone else’s emotional experience with such ease. But I feel the lack, the gaping hole where an experience, an emotion should be.

I’m so tired of people telling me how lucky I am, how fortunate to have the coping mechanisms I do, how blessed to be as talented as I am, and who knows whether the autism contributes to that, and I should be grateful. I am grateful. But I’m also sad. And worried. I desperately want to be independent. Is that too much to ask? I wish I knew. I wish I knew what I was supposed to do. I keep grasping blindly at opportunities, some accessible, some not, some likely, others less so, trying to figure out what I’m supposed to do and who I’m supposed to be. I have never been good at deciding what’s right for me. I’ve always relied on others to tell me. But now I’m an adult and I’m supposed to figure these things out for myself.

But what if I can’t?

Posted in Book Two - Mind, Setting 1 | Tagged , , , , , , | 1 Comment

this is why

OK, I’ll admit, I was one of those liberals that didn’t get the Trump thing. While I might not have been as addicted to the daily outrage flung up the flagpole by the media as some, I entertained a lingering, if small, hope that he would do something so outrageous, or better yet, illegal, that he would be ousted and things would get back to “normal.”

But lately, as I’ve had to defer things because I can’t afford them, like a graduate certificate, or buying a home, I’ve started wondering. Why am I clinging to this supposed “normalcy?” What is so great about the way things are going in this country that I am hanging on to them with grim, thoughtless, white-knuckled tenacity?

I mean, yes, government does do a few things, perhaps more than a few, pretty well. My potholes get filled (sorry, Arkansas). My mail shows up on time, every day. My electricity runs without fail, notwithstanding minor interruptions from Mother Nature, a tax for living around lots of trees which I’m happy to pay for the privilege. My meat is safe, my medicines are what they say they are, and my car gets decent gas mileage and will deliver me unharmed from most altercations with other vehicles. Many take this stuff for granted, but I don’t.

But about everything else that interfaces with my daily life, not so much good. People like me like to try to pick things apart into smaller, manageable bits and come at them that way. The opioid crisis. The longevity crisis. The obesity crisis. Food deserts. Minimum wage. Corporate bonuses. Health care.  Like picking fruit off of a tree in hopes the tree will stop bearing fruit.

The problem isn’t the fruit, though. It’s the tree. The way our economy runs and our government’s interaction with it does not work any more. We are suffering from a much larger crisis, that of an entire middle class that has been stripped of the ability to make a decent living. The number of jobs that enable families to afford a house, two cars in the garage, and a stay-at-home mom has significantly atrophied. Even manufacturing jobs, the few that are left, do not pay enough to support a family all by themselves. And as for a higher education, not only is that no longer a guarantee of a better opportunity, but it saddles one with crushing debt. An enormous swath of this country has been priced out of the market of making a living.

And they know it. Maybe not in the way that I can see it, bright lines against a black background, but they feel it. Because there is no other way that people, good people, would hold their noses and pull a lever for Trump, unless they were in desperate straits. They knew what they were getting. None of these scandals surprise them. They just had to send a signal. Something has to change. Not a bunch of little somethings. One big something. And Trump was all they had and so they offered him up. Don’t you get it?  

The New Deal isn’t new any more, and it isn’t a good deal. It’s long past time that people stop saying “Americans need a leg up” – which most of them would eschew anyway – and admit that our whole system is failing and we need to think seriously about scrapping the entire mess and doing something else. If we can’t apply some downward pressure on the costs of living – all of them – fewer and fewer people will be able to afford them, and that is a recipe for dangerous discontent. If something big isn’t done, or if people don’t sense that their government is at least trying to do something – something real, something important, something they can see happening in their own lives – then Trump isn’t an aberration. He’s just the beginning. And there won’t be fewer people voting for him and those like him.  There will be more.  And I might be one of them.

Posted in Book Two - Mind, Setting 1 | Tagged , , , , | 1 Comment

actress

I am an actress. Ever since I was a little girl, I have imitated other people. Like a mirror, I could reflect was what was seen and spoken to me. I mimicked words I heard and actions I witnessed. To those around me, I appeared normal, but after spending some time with me a disconnect would become apparent, revealing that my speaking, moving being was not imbued with the same type of inner self as those around me. I misunderstood, seemingly willfully, basic human communication. I was ignorant of the norms of social interaction. Inside this realistic shell, something essential was missing, or broken, or, at best, unrecognizable from what was inside everyone else.

I was verbal and literate from a very young age, and dramatic. I loved to read and act out fantasies, and to imagine them playing themselves out in my otherwise mundane and often frustrating existence. I wasn’t like other kids my age, and they made fun of me and didn’t want to be around me. I lived in books, relating to every misfit I read about, who would come to some realization by the end of the novel and suddenly not be such a misfit any more. I waited for that realization to happen to me. I didn’t want to be a misfit, that odd, weird person no-one wanted to be friends with.

The realization never came. By the time I was in high school, my peers actively disliked and avoided me. One girl once said to me: “You always know how to say the exact wrong thing!” and stormed off in tears. I felt horrible, and horribly confused. Why had it been wrong? What was the right thing? I must be doing something wrong; no-one ever stayed friends with me for any length of time. As things got worse, I grew stiff and shy. I always spoke up in class – teachers never seemed to find me in the wrong – but around other people my age, I said almost nothing.

I went to college in the early 90’s when goth was coming into the mainstream. I loved the music and the culture; they matched my increasingly negative inner monologue perfectly. I found a group of people who did not think I always said the wrong thing; they thought the world was a hopeless dystopia and acted like it, which was considered “being real.” (Which, I thought, was all I’d ever done, anyway. I never lied; I could barely manage to soften the truth, hence the lack of friends.) And yet still, I was missing something. Women tried to make friends with me but I couldn’t see it. I thought they just felt sorry for me. I didn’t know what they wanted, or what they meant.

I never seemed to know what anyone meant.

I discovered that alcohol solved a lot of those problems. It dismantled my reserve and suddenly, people thought I was funny. I found a social group – freaks, we called ourselves – that took pride in purposefully rebelling against social norms. I also found I could consume large quantities of alcohol and hold my own – yet another skill they valued. But I took it too far. I fell into addiction, relentlessly chasing that feeling of belonging, into more alcohol, and pot, and harder drugs; into illegal after-parties in dangerous parts of town; into relationships with controlling men who told me what to do, a relief, since I never seemed to know. My old group of friends fell away and I was surrounded by drunks, addicts, and drug dealers. I started self-destructing with vigor. I had never been very good at being a good person, anyway. Might as well take it all the way down.

I caught myself, close to the bottom. I was tired and it wasn’t fun anymore. I quit smoking, drinking, and all the drugs, and dumped the numbers in my phone, cutting off everyone from that life. I started looking for a new person to be and another group of people, and was drawn into a group of local singer-songwriters. I threw myself into the effort of reflecting them, the things they said to each other, the things they did for one another. I was much better at it, by this time. I had built up a volume of correct responses for various social situations. I was a good singer, wrote music, and was funny on a microphone between songs. People told me I should move to New York or Nashville, that I needed to network so I could build a career.

But I couldn’t. I didn’t understand networking; it seemed like transparent self-aggrandizement. I also still had difficulties with groups of people. Without alcohol, parties exhausted me, and live music was painfully loud and overwhelming. Few artists held my interest; I grew fidgety and tired watching the others. And the thought of moving to another state, all by myself, was terrifying. I still relied heavily on my parents to take care of me; I didn’t know what I would do, so far away from them. I couldn’t imagine it, and so I never left.

The music career fizzled out and I started working with animals as a veterinary assistant. While people were completely opaque to me, animals were an open book, so I thought work around them would help me feel more normal. It went well for a time; I was good with dogs and cats. They calmed me, and so I calmed them.

Unfortunately, working with animals still means working with people. At one point, my supervisor pulled me outside. She said no-one wanted to work with me any more. It was my attitude, she added, thinking she was being helpful. But I was at a loss. What attitude? I didn’t think I was behaving any differently. I started to cry. She told me to take off the rest of my shift, go home, pull myself together, and come back for my next shift in a couple of days.

I resolved to be better, and I was, for a few weeks, carefully curating everything I said to remain “positive.” But I couldn’t keep it up. I would get tired, the facade would slip, and my normal behavior was off-putting. I left for another animal clinic.

And eight months later, another after that. One, I almost made it a year. The next, I didn’t last the summer. Something wasn’t working. Something about me was still wrong.

I buckled down. I simply had to get better at this people thing. I thought I was just lazy – other people managed to be naturally sensitive to others, so why couldn’t I? I just needed to apply myself. I started studying human behavior closely and I delved into the acting like never before, some on stage in community theater, but even more so in real life, with still another new group of friends. I came to realize that people lied to each other, all the time. They pretended to be interested in other people, to be happy for them, to agree with them, even when they didn’t. They expressed sympathy for things they did not necessarily care about. They made a point of making other people around them feel good about themselves even if it necessitated a blatant disregard for reality.

I didn’t understand it, but I could imitate it. I did want other people to feel good about themselves; I didn’t want them to not want to be around me. I became much, much better. But at a cost; it was exhausting. I couldn’t keep it up for very long; not enough for a forty hour work week, or, going back for a second bachelor’s degree, a full load of courses. But I found a job while I was at school, caring for animals in the animal research wing, where I saw almost no people at all. It is the only job I ever kept for more than a year. Just me and a few thousand mice. It was perfect. I loved it.

My professors loved me; I was bright, articulate, and insightful. My classmates were friendly with me and seemed to enjoy my company despite the near twenty-year age difference. Things were working, finally, for the first time in my life. It took me five years, but I graduated with honors.

Then I started a graduate program. The social aspect was not a problem, mostly because graduate students are too busy to socialize. But I foundered under the deluge of course work and bench demands. The autonomy immobilized me. I couldn’t put an experiment together from start to finish, never mind a slate of them to test a theory. I tried to get my student mentor to tell me what to do, and he finally said, more gently than he probably wanted to, that this was graduate school and I needed to figure these things out for myself.

My classes were worse. I couldn’t understand what was being asked of me, couldn’t assimilate all of the information, couldn’t prioritize it, and couldn’t figure out what I was supposed to learn. As an undergraduate, I had simply learned everything, more or less. This strategy fell apart in graduate school; there was far, far too much. My first exam came back and I had the lowest grade in the class.

I went to see the professor, who said, “I didn’t understand your exam at all. You didn’t answer the questions I asked.”

My other courses were no better, and on the bench, I had only produced one piece of usable lab data over the entire semester. Three weeks before finals, I underwent a battery of tests, desperate for some explanation as to what was wrong with me.

One week later, I had a diagnosis. Autism Spectrum Disorder Level I, a high functioning cohort of autism that includes those with Asperger’s syndrome. And me.

My life up to that point had been an impenetrable entanglement of failures, frustrations, and misunderstandings. It now settled into place like blocks in a preschool puzzle. It’s not my fault.  I kept thinking.  It’s not my fault. I did the best I could.

I was relieved. And so, so angry. How had it been missed? How many therapists, doctors, educators, had simply diagnosed me with depression, told my parents I was just exceptionally intelligent, bored in my classes, that some children had difficulty fitting in, that I was otherwise normal? Normal? I was anything but normal.

I had been trying, wildly unsuccessfully, to force my autistic brain to operate under a neurotypical framework that it was immensely ill-suited to and no-one noticed. I had floundered, apparently invisibly, for four decades. All my problems had been laid at my own feet; I had been called insensitive, accused of not paying attention, not concentrating, not trying hard enough. None of those things had been true, but a lifetime of accusations had shredded my sense of well-being. I was now not just autistic, but horribly anxious and depressed, all the time, unable to reconcile my inner self to the outward impression I made.

No-one could ever tell I had autism. Not even my graduate advisor, who figured I just couldn’t hack it and pushed me aside. I dropped out after one semester. To this day, he does not know.

My acting, ironically, was now flawless; at some point, my disguise had become complete. No-one withdrew from me any more. The woman who had administered my psychological exam wrote that I was “warm and easy to establish a rapport with.” My few friends adored me. No-one had – has – any idea whatsoever that I am a faker, a sham, a walking performance piece entitled “Socially Habituated Human.” Or that maintaining such a performance requires an immense expense of mental energy that was, and still is, extremely taxing.

Outside of work – I am back working with animals, again – I have little energy left over for socialization with friends. Going to dinner with a group is impossible; there are too many people to try to interact with at once and I can’t focus on the right ones at the right times. I can’t stay at a party for more than an hour, and I am zombie by the time I leave. But I can’t turn the performance off to save energy any more; it’s now a permanent part of my demeanor.

I’ve wondered if it might be a protective mechanism, to shield me from the ostracism I suffered so often growing up. I’ve wondered if I’ve somehow pushed my brain into making new connections that it wasn’t physiologically designed to make. Whatever the reason, as soon as I am around another person, I switch on as though triggered by motion sensor. The smile. The greeting. The interest in his day, asking after her son, their weekend plans. I can’t not do it. Unless I am alone.

And so I have to live alone. I can’t do this at home, too. My only roommates are pets, cats, and they are perfect; quiet, accepting creatures, content to curl up next to me and snooze or groom themselves while I write or watch TV. (But not while I play guitar. Everyone is a critic, it seems, even animals.)

I know my limits. I have become that odd person I had so fervently wished not to be as a child. I joke with my co-workers about my absent-mindedness, my OCD, my need for repetitive activities. Everyone knows about me and my sunflower seeds. Wait – are you eating the shell, too?

I hoard bubblewrap. I pick through the empty boxes after shipments come in and stuff it in my tote bag so I can pop it in my car when I’m stuck in traffic. My friends know that when we go out to dinner, I have to sit with my back to the TV so I can pay attention to the conversation. My niece knows, too.

“Your aunt has a lot of little things she needs,” I said to her once.

The thirteen-year-old rolled her eyes and sighed. “I know.”

I resent it sometimes. For all of my gifts, the intelligence, the writing, the acting, the music, it makes me sad that I am consigned to walk around in the perpetual pose of a very good guesser. I never did learn to read people. Close friends and my family I have been able to study, the way I studied philosophy or chemistry. I have learned what their tones of voice mean, and the indications that underlie subtle shifts in their facial expressions and postures. But I can’t gather that much information on everyone I meet. I just have to rely on what I know intellectually is most likely to be appropriate in a given situation, toss it out while appearing as sincere as possible, and hope for the best.

And what frustrates me more than anything is that no-one has any idea that this is what’s going on. If I do make a mistake here or there, people are too polite to mention it.  At work, though, I am always playing catch-up.  If I am too distracted, focused on some task or another, and my voice will turn taciturn, making me sound unfeeling or rude. I still struggle with understanding my mistakes, made worse by my inability to use the information provided therein to avoid them in the future.  Workplace politics are completely beyond me.  Even though I have been open with them about my autism, they don’t see it, and don’t perceive what they can’t see. I am held to the same standards as a neurotypical person, with the same consequences if I slip up.

No sees the constant mental calculations involved in everything I say and do, the herculean effort I must exert to stay in the here and now, to respond to those around me in a socially acceptable way at all times. I can’t allow my mind to wander, ever, unless I am alone. And it usually doesn’t. I’ve been doing this for a long time; it is pretty well baked in.

I was talking to a close friend, who asked about whether I do it around my family, turn this puppet on that I manipulate through various social situations. And I don’t think I do, or at least, not to the same degree. But I also feel a lot of love and sympathy for my parents, who had this alien creature on their hands for so long and are just now coming to understand what she wants and needs. Plus, Momma Ape still isn’t doing so great, physically. The least I can do is put a lid on it around her; she’s having a rough go already. Poppa Ape, probably more worried about her than he cares to admit, also doesn’t need to navigate excessive layers of my crazy right now.

I can be myself around TNC Ape (my sister), but I now have a thirteen-year-old niece whose only exposure to autism is probably the weird kid in her class who wears too many sweaters at once and doesn’t talk to anyone except to announce at various times that he is able to perform some task or another. She already knows her aunt TG Ape is weird; I do find myself acting around her.

So yes and no, and still, only comfortable alone. That’s pretty much it. Although, I can confidently say that I don’t perform for my pets. Or my patients.

It’s nice, being alone with the patients, just me and someone’s beloved dog or cat, in those brief moments when I’m waiting for another nurse to finish her task so we can take an x-ray or take out his sutures or some such. It’s the best part of my day. I sit next to him, hold him close, bury my face in his fur and tell him it’s going to be OK. And sometimes, I’ll feel him relax a little and lean against me while I rub his coat. For once, I am with another creature, just as myself, and we understand each other perfectly.

Then the other nurse comes in, the actress reappears, and we get on with the rest of the day.

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where god is

I have suddenly realized that somehow, somewhere, over the last however so many months, I have lost my faith. I used to center it in the altruism of humankind, the ability of my fellow creatures to reach outside themselves and do something for which there is no reward, other than the inner satisfaction that comes from being useful, being helpful, being needed. But I am now left feeling unfulfilled by that alone, that which is, for all intents and purposes, a mere mental construction, a sidestep taken to avoid confronting the persistent doubt that anything greater actually exists.

I have tried to find that something greater, grasping at the gods of different religions, trying to take hold of them, and yet unable to assimilate the gildings of humanity that entrap their ephemery – this god, this belief, this way. It makes no sense to me, my autistic brain insisting on the purity of a definition: that if it is god, then it must need none of those things. Humans need those things; gods don’t.

And how to ascribe to some unknowable force that which science readily explains? What’s learned cannot be unlearned. When understanding is best reached through critical exploration, double-blinded study, tissue- and cellular-level examination of life, sub-atomic dissection of matter, how to imagine anything beyond those extraordinary boundaries, those laws, so painstakingly acquired? I do not see god in churches, chapels, temples, nor under microscopes or in equations or in heavenly [sic] bodies, all of which are entirely describable within the parameters outlined above. There is a scientific underpinning for virtually everything. There is too little of what there isn’t to justify the existence of some all-powerful force with its hands on the levers. God didn’t take my shoulder pain away. A surgeon did that. God didn’t cure my insomnia. Medications alleviated it. (And imperfectly, I might add, on both counts.) God didn’t almost take Momma Ape from us last summer. Medical, scientific, human mistakes did that.

I can explain almost everything around me with science. What little I cannot, I am able to attribute to a depth of scientific knowledge as yet unplumbed. Where is there room for a god in that?

And yet I ache, inside. I am terrified of being spiritually alone. It crushes me to think that once the body I inhabit disappears, I, all of my thoughts, all of my personality traits, the way I smile, the way I write, the way I move (all more or less within the scope of modern genetics, of course), will disappear with me, just vanish, as though they never were. For what are they, anyway? Are they truly nothing, little bits of information, meaningless when taken apart, their very coherence the product of a mind biologically predisposed to assume the presence of a higher power with absolutely zero hard evidence as to its existence?

Was there more god in ancient times? Or simply less science? If we cannot explain it, it must be god, yes? Originally, some cultures assumed god was female, since females were the producers of life, back when males were not thought to be an essential component. Because they just didn’t know. People thought gods changed the phases of the moon, brought sun and storms, health and disease, made crops flower, animals come and go, seasons cycle past, all because they had no other explanation. And at every step, the more we learned, the narrower the scope became within which a higher power could work.

Certain humans and cultures fought to keep their god as science marched forward, fought to preserve a small corner of existence for a great unknown, claimed knowledge of an unknowable afterlife, clamoring for a piece of the mystical outside the reach of human influence. Now, even though we have yet to definitively understand how life as we know it began, scientists are so close that a guiding hand, or even a bare nudge, may soon become gratuitous to the explanation. And what then? What space will remain for god to inhabit? Coincidence? To think of a god reduced to scheming via luck, seems no god at all, just natural randomness that we choose to see patterns in, pattern-seeking creatures that we are. Creator? Not exactly.

But in complaining of this to a close friend a few night s ago, he responded, “Well, how do you expect God to act? By sweeping down from above?”

Is it possible that I have missed something? Is it possible that god is in everything, and that our understanding of it and the world is parceled out to us as such because it is the only way our minds can envelop it? Not because there isn’t more out there, but because the limits of our mental capacity bar us from comprehending it? That we cling to science because we need a world with rules, because a world governed by spirituality alone doesn’t make sense? That whatever god-thing there is is careful not to reveal itself, to act only in ways we can explain away, to hide in plain sight, to be everywhere and nowhere at once, for our benefit? For what would happen if we did suddenly discover that all of these laws of physics and chemistry and biology could be overturned at the whim of some all-powerful consciousness? What anarchy might descend if the rules no longer held, if god suddenly was everywhere?

There are certain, inexplicable outcomes that scientists refer to as “jealous phenomena”. These are happenings, turns of events, strange abilities that wither under the light of scientific inquiry, and yet seem to exist nonetheless; a cat that can tell when people are about to die; a child who knows when a beloved uncle has passed hundreds of miles away because he visits her in her bedroom doorway, a woman who can hear animals’ thoughts. In the same way that observing certain subatomic particles freezes them, changes them, as soon as we try to get a hold of otherwise inexplicable happenings, they vanish. Is this itself god, hiding from us, knowing that we simply cannot absorb the unadulterated entropy of a frameless existence, outside the time-linear, three-dimensional, physical world we comfortably inhabit?

Perhaps science, luck, coincidence, is god’s way of protecting us from the full havoc of its being. Perhaps it works through our physical laws not because it needs to, but because we need it to.

And it has been there all this time and I just didn’t see it?

More important, can I see it now?

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book two – mind

It seems that fate has deemed that I did not get a thorough enough education in invisible disability from my chronic pain.  Since that has been reduced to the category of problematic, rather than life-altering, a new demon has arisen to take its place.

In December of 2015, I discovered I was a high-functioning autistic.  I had assumed that being armed and open with this knowledge would be more than enough to forestall any future difficulties with it.

I was incorrect.

Welcome to Book Two:  “mind”

 

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can’t

What does it mean when you say you “can’t” do something? Sometimes it is literal – I literally can’t do a handstand. But often it is more subtle, meant to impress a sort of finality despite the lack of a literal barrier, an underhanded implication that we would, under other circumstances, but for reasons we wish to assert are beyond our control, we can’t.

As for me, right now, I can’t swim.

Except I can swim. Adeptly. Swimming isn’t like running, a sport anyone can take up at anytime via purchase of a pair of running shoes and a personal commitment. No-one has to to teach you how to run. But you have to be taught how to swim, even if the teacher is yourself. Swimming with any kind of efficiency generally requires a teacher other than yourself, along with adoption of a small parcel of other skills like remaining horizontally afloat and learning to breathe while moving through water. There’s a hump to be gotten over for starting regular swimming, a higher boost of activation energy to go from 0 to 1 than there is for running. I like that about swimming, even though I am able to through no personal perseverance of my own, and would do it whether or not that were the case.

Like me, many adult swimmers learned to swim when they were kids, something deemed important by their parents, such as learning to ride a bike or drive a manual transmission – not absolutely necessary for survival, but a useful skill nonetheless. Some tenacious individuals took it up as adults for their health or because they simply wanted to.

I know there was a time in my life when I couldn’t swim, when I was afraid to put my head under the water, but I don’t really remember it. For all I know, I love to swim, and always have. I love the water and I love being in the water. As ungraceful as I am on land, my frequent forgetting of where my hands and feet are, my persistent inability to improve my hand-eye coordination, none of that matters in the water. In the water, I am graceful, powerful, knowledgeable. I’ll swim just about anywhere. The ocean is my preference but I’ll take whatever you’ve got, as long as someone says it’s safe (and perhaps even if someone says it’s not).

But every time I swim, now, my shoulder pain rockets from a 3 to a 9 within 48 hours. The cause-and-effect pattern has been established. So right now, I can’t swim.

I had said I would do whatever it took to keep from being in that kind of pain again. And I hate all the drugs, the time and money wasted on pointless physical therapy, the injections, the roller coaster of hope and disappointment. I mean it when I declare I’d do anything to get a pass from that horror show.

But what if it means I can’t swim?

I mean, that’s the logical end to this thought exercise, isn’t it? What do I want? To not be in pain. What causes my pain? Swimming. Well, it seems pretty simple, doesn’t it?

But I love to swim. Am I willing to never swim again in order to not be in pain? How is it that I’ve found myself in this place, where I have to sacrifice a cherished activity, something generally considered good for one’s health, in order to be well? I don’t want to say I can’t swim. I don’t want to not be able to swim. But I have this fear, and it’s strong, about swimming, and about pain.

I mean, I can swim, if I want to deal with debilitating pain for several days afterward. I suppose I should try to arrange for some diagnostics to “catch” whatever the swimming is doing in the act – set up an MRI or something and then do a swim workout the day before and see what it sees – if it sees anything. Which it probably won’t. But maybe I should ask. Because it’s the only hope I have now, I suppose, of figuring out why it is that I shouldn’t – can’t – swim.

Because right now I can’t. I can’t swim. I am unable to, not because I don’t know how, not because I wouldn’t rather, but because of other circumstances which prevent it, without which I’d probably be in the pool right this very second.

So, I can’t.

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