one who cares

I had the privilege of attending the National Science Writers Conference this weekend, which was conveniently about a forty minute drive from where I live. The membership heavily tilts toward science journalists, but theoretically includes anyone in the science communication field, and I consider myself to be one of those anyones.

The opening plenary was a debate about whether science writers are responsible for building public trust in science, and the participants were extremely well-spoken and made several good points. In fact, while the majority of the audience was in favor of the sentiment at the beginning of the debate (by informal vote), this was switched to against by the end, which delighted me; I love to see this kind of open-minded flexibility, of which there seems to be precious little, of late.

In the same auditorium following the plenary was “Apocalypse how? The challenge of writing freshly about huge intractable problems.” I have wondered myself many times how to do just such a thing, and was excited to hear the discussion.

The panel consisted of two writers and an editor; Kathryn Schulz (New Yorker), David Quammen (National Geographic and many books), and Virginia Hughes (Buzzfeed Science Editor), all with several impressive articles and credits to their names. The discussion wandered a bit, but there were a few gems I thought I could incorporate into a good blog post. When the time came for questions from the audience, I decided to bring up something in my notes that the panel had not yet approached, in hopes of getting some insight and maybe even moving the discussion into a different space.

So I screwed up my nerve and stood up. I was right next to the microphone and I made sure one person got there before me and slid into line. I got more nervous the longer I stood there – what if I messed up the question? – but I promised myself when I signed up for this conference that I would try something new, and this definitely qualified. When it was my turn, I said, more or less, that while we all love how messy and nerdy science is, myself most definitely included, how do we communicate science to those who aren’t necessarily science lovers; how do we make this knowledge interesting to them?

I could tell about halfway through that I was not being well-received, but that’s never stopped me before, so I finished what was at least a well-phrased question.

And was rewarded with several seconds of dead silence.

Broke the panel. First question I ever asked at a conference and apparently I took a big fat dump.

The participants stared at me as though I had run over their dog. All their dogs. David Quammen actually looked physically ill.

I wanted to sink into the floor, but the floor was not cooperating. I thought about stepping down, but decided I stood by my question, so I stayed at the microphone and waited.

Finally, Quammen answered, blustering that he didn’t see a need for that sort of thing, that pandering to people who wanted to know “what’s the bottom line” was not his business and not what we as science writers should be doing. Schulz was a bit kinder, suggesting that being able to make it personal to someone, even in an existential sense, could provide that access point, although she, too, expressed an unwillingness to strip science of even a single iota of its wonderful nerdiness to make it of interest to someone outside our sphere. After a few more words that I don’t remember (by that time I was just hanging on until they finished and I could slip back into obscurity) they moved to the next question.

Up to this point, I had been looking forward to sticking around for lunch, meeting more people, getting to another panel. After my question fail, though, I felt like I’d had the wind knocked out of me. I had been all but dismissed, the question considered inappropriate. Whatever the point of this panel was, this conference was, I had clearly missed it completely. Was this another Asperger’s mistake? What just happened? What had I done wrong? I mean, clearly something, even I could tell that much, but what, exactly?

It seemed like I had suggested demeaning ourselves – and science, apparently – in pursuit of a pointless goal, that of speaking to a non-scientifically-minded audience about science. A bridge too far, even insulting. How dare I? Who was I to cross that line (I guess there’s a line?), some lowly graduate student no-one had ever heard of or seen before who’d never written anything of consequence? After listening to a few “appropriate” questions, and before the panel ended, I decided I didn’t want to be there any more and I picked up my tote and walked out.

I do not think it is demeaning to explain why something is important without going into all its delightful but messy scientific attributes of question and theory and question again, of the crooked line through research, of its incremental nature and necessary removal from the world we see around us; if someone wants that kind of insight, I respectfully submit they know where to find it. I can’t get on board with the idea that science writing is only about writing for people who are already interested in science. Yes, of course, that audience is important, and I am one of that audience, in fact, who enjoys science articles written for people who like science.

But in this day and age, there are many people outside this bubble who need to know why the gut microbiome and antibiotic resistance and algae blooms are important, and we are not reaching them. The void is instead being filled by people who create their own facts, by people who don’t know what they’re talking about, by people who only want to push a viewpoint and actual science be damned.

And if we, as science writers, are not willing to step into that void, then we have abdicated our responsibility as journalists, as writers, to disseminate this information, to help non-scientifically minded people understand what these things are, what they mean.  If it’s not our job to try to reach the people outside our circle, whose job is it?

I would argue that all people need to know these things, not just us, and it would help if we did not appear to be talking down to them and trying to make them feel stupid by refusing to have a bunny slope. I believe that you don’t have to have gone to college or memorized a formula or passed a standardized test to understand these critical, prevalent matters. And if we insist on a price for admission, a scientific background that includes understanding acid-base chemistry, caring about the standard model, and getting the joke about the rabbit in the Pre-Cambrian, we are never going to connect with the people who need our knowledge and writing skills the most.

We are gifted with language. We are uniquely equipped to describe what it is, how it works, and why it’s important. I don’t understand why doing this for a wider audience is considered beneath us. On the contrary, it should be our guiding principle. We are writers with science backgrounds; we can always punch up, and I’m not saying we should stop. I would add, though, that it is through our ability to go in the other direction, to maintain sense and purpose while doing away with unnecessary detail, exclusive jargon, self-serving prolixity, that we can be of the most service to those around us.

We gain nothing by sequestering ourselves in an all-or-nothing ivory tower, digging in our heels and insisting that there’s only one way to understand science, and that it is the way it is understood and taught in academia. We are in the minority, and if we don’t turn outward, dismantle the checkpoint system, and allow access to all backgrounds and knowledge bases, we will lose this war against “alternative facts” that so many are up in arms about.

Just because you’ve decided that the only way to really understand taking someone’s life is to do it with a sharp-edged blade in close quarters doesn’t justify bringing a knife to a gun fight.

You’ll just be dead and you won’t have taught anyone anything.

Posted in Book Two - Mind, Setting 2 | Tagged , , , , , | 3 Comments

spectacle

I don’t pay attention to political news, these days. Both camps have crystallized themselves into positions of pearls-clutching outrage that have grown beyond tiresome. My political leanings are no secret, but it’s clear that half of the country disagrees with me, and what’s been important to me lately is trying to understand why.

But an article on Slate.com peaked my interest yesterday. It suggested – which is all one can do, of course – that the most recent supreme court nominee might have a drinking problem.

Something else that’s not a secret on this blog is that I, too, struggled with alcohol at one time. So I decided to go and read the transcript myself. And I thought this was going to be a post about that, about alcohol, when I started writing it. But after working through my thoughts a bit, I realized that what was upsetting to me about it was something else entirely.

My friends on the right side of the aisle are up in arms about a witch hunt. They say the nominee is under an unfair microscope. That his accuser is being manipulated by Democrats for their own ends. That he’s being railroaded simply because he is a white male, the root of all evil.

My leftie pals are convinced the guy is a sexual predator, a man who abused his privilege. That he’s exactly what’s wrong with this country and is only getting what he and all those other old white male assholes so richly deserve.

I don’t have any use for either of those viewpoints. They just turn the man in question into a thing, a label, a symbol of whatever their current grievance happens to be, never mind there’s an actual human being in there whose life has been drastically and permanently altered, and to no good end. I mean, let’s say, for the sake of argument, not saying he does, but what if it came to light that he did have a drinking problem, maybe needed some help? Well, too bad, addressing that is decidedly not on the menu, no-one I’ve talked to seems to think that makes any difference at all.

Now, I’m not ignoring the elephant in the room. On the contrary, it boggles my mind that when it comes to handling crimes involving, you know, stuff, we’re still acting like we’re stuck somewhere in the fifteenth century. Let’s all self-righteously give ourselves permission to take the personal lives of other people, lay them out in public, pick at their scabs, and live stream the whole bloody event. While we’re at it, let’s bring back stoning and burning at the stake, come on now, don’t you miss all that good family fun.

Are we all so much better for having last week’s circus, because that does seem to be the appropriate term, permanently posted on our national home page like graffiti on a bridge? There’s an interstate here where an overpass stretches across just as the Mormon temple comes into view. Over two decades ago, someone spray-painted “SURRENDER DOROTHY” on that overpass (lulz). It’s been painted over several times, but you can still see some of the letters. That’s how I feel about last Thursday’s hearing. It’s always going to be there; it doesn’t matter how many times we paint over it.

Here’s a thought. Maybe, as soon as someone became aware that a crime might have been committed, that someone could have said, “nope, this isn’t our job, we’re going to report it to the proper authorities and just stick to the political stuff.” Turned it over to law enforcement, used that court system we have, we wrote a constitution, we specifically put clear protocols for the adjudication of exactly this sort of thing in it. And if this was about anything that wasn’t about, you know, stuff, who knows, that might actually have happened. No senators. No speeches. No cameras. No spectacle.

But no, that’s not how it was played. Instead, the people involved decided – made a decision, a choice, no-one was forced here – to handle it, or rather manhandle it, themselves. The result of their fine work is that a victim has been assaulted for a second time, this time in public, and the accused won’t be able to find an impartial jury anywhere in this hemisphere. Does anyone else see the irony in a nominee to the Supreme Court of the United States – whose primary purpose is to interpret and enforce constitutional law – being denied his rights under the 14th amendment?

And I can’t find anyone to talk to about how I feel, on the left or the right, about how conflicted I am, how sad I am, how scared I am that this is just how it’s going to be from now on, us locked in an ideological arms race and pouring concrete for a future where compromise isn’t in the blueprint.

We’re better than this; I have to think we are. This didn’t have to be this way. I don’t understand why it’s so hard to simply take a moment and think about the people involved as people before deciding to act. And why is it that I can see this so clearly but can’t find anyone else who sees it the same way? I’m on the spectrum. I’m supposed to be the one who doesn’t understand how social interaction works, and you know what, I guess I must not, because I don’t get this at all. It feels like we went very, very wrong on this one, despite opportunities to do otherwise.

I can’t be the only one who feels like this has exposed a critical flaw in this process, and that it may be one of the last opportunities to change the way we handle these things in the future. Is anyone else willing to put down her weapons and say “enough, this isn’t working, can we just talk for a second, try to figure something else out?”

No-one’s taken me up on it yet. But I’m still hoping.

Posted in Book Two - Mind, Setting 2 | Tagged , , , , , | 1 Comment

swamped

I was thoroughly tired of school, after getting my second bachelor’s in 2015. I was tired of how it seeped into every crack and crevice of spare time I had. I was tired of telling friends “I can’t, I have class,” “I can’t, I have an exam,” “I can’t, I have this project due,” etc., etc. I was ready to embrace the simplicity of a 40-hour-a-week job.

And yet, three years later, here I am again, having class, having projects, having jobs that bear no resemblance to the eight-hours-a-day structure I had fantasized about. What the hell am I doing?

The most recent project completely overwhelmed what I thought were some pretty sweet time-management skills. I am nothing if not brutally adherent to a specific routine (thank you, ASD). But the reading – not that I would call it that – the skimming, grazing, base-touching I employed to get through two years worth of peer-reviewed journal articles in a week laid me out. I caught myself prowling ebay for musical equipment I can’t afford to escape the tyranny of a five-figure reading page load. I spent too much time playing with my blind cat. I watched old epsisodes of Law & Order for breaks. I was literally on my butt in front of a screen for upwards of ten hours a day, and in between all that reading and writing trying to do my job work, for which I get paid (or rather, without which I don’t get paid). I was up into the zero hour (all my clocks are on 24-hour time) almost every night, which is far more depressing than an hour with a number in front of it, trying to cram one more article, one more issue, one more source.

Don’t get me wrong, I loved the journal. It fascinated me, and there were too many articles I actually read because they were so interesting. But despite that, right now I’m just wondering, four weeks into an introductory course, if I really want to set myself up for another two or three or more years of this.

But I do love this material. Yes, I gutted it out through a second bachelor’s to build my STEM cred, but being back in the humanities reminds me what home feels like. I wish I could have had a month for this project. The more I learned the more I wanted to know. It was like opening a box you thought had ten chocolates in it and there’s five hundred. Heaven knows you can’t eat them all in one sitting but each one is different and new and looks so tasty.

Who knows, maybe I belong in school. Maybe I do my best work when I’m pushed up against a wall. I’ve been more prolific in the last seven days than I have in the last seven months. I just have to keep reminding myself that no matter how hard it is, it’s intellectual candy and I’ve got a sweet tooth. I’m swamped, but I’m OK. Bring it on.

Posted in Book Two - Mind, Setting 2 | Tagged , , , , | Leave a comment

placeno

hand-on-snake-crop

“The chronic pain placebo responders also were emotionally self-aware, sensitive to painful situations and mindful of their environment.” – Science Daily Sugar pills relieve pain for chronic pain patients: Placebo benefits can be predicted by brain anatomy and psychological traits

So, I am officially none of the traits listed for placebo beneficence. I cannot tell what I am feeling until it’s turned up to eleven, I am remarkably insensitive to painful situations (electric stimulation being a notable exception), and I am physiologically incapable of being mindful of my environment. Basically, if you have autism, sorry, you get nothing from placebos. Next patient, please.

If only I could just leave it at that. But no, the article disturbed me, dragged me away from an immense load of schoolwork, and now here I am trying to wrap my head around it.

I have a very strong negative reaction to the assertion that placebos work on chronic pain, since I can count on one hand the number of people I have encountered for whom this is true, all two of which reported an improvement in their condition as a result of acupuncture. It’s no secret on this blog that I consider acupuncture to be the most nefarious example of woo crap that has gone mainstream (although certainly not the most nefarious example of all woo crap, a title for which homeopathy and energy healing are locked in a dead heat). The science is clear. Acupuncture is a placebo. Period. If it’s worked for you, great, you’re one of the lucky ones, throw away all your anti-inflammatories, Skittles and m&ms will do the job for you from now on.

This study’s findings make the arguments against woo much more challenging, because researchers have now discovered a discrete subset of people for whom placebos will work and they can even define the specific psychological traits associated therein. Which means that most placebo-susceptibles will go through their lives thinking that homeopathic sugar water fixed their indigestion and energy healing worked on their lower back pain, and they will swear to this fact up and down to anyone in internet distance and in the face of whatever science gets thrown at them. They’re never going away. And because of this subset of patients, woo is never going away, either.

I suppose on some level I had always assumed that woo would have its fifteen minutes, like, you know, patterned leggings or buttered coffee or whatever, and then slip back into the obscurity from whence it came. An obscurity that, up until about five minutes ago, I wholeheartedly felt it richly deserved.

But who am I to take away the thing that takes away someone’s pain?

If a placebo had worked for me (hasn’t happened), I’d have been overjoyed, ecstatic, f*** the science, I would have shouted it from the rooftops. My pain was cruel, severe, and encompassing, it shut the rest of my life away, it took over nearly all of my waking moments and too many of my sleeping ones. And from that perspective, by all means, if a placebo-like-something works for you, don’t question it, because real pain medications come packaged with unpleasant hormonal, neurological, psychosomatic, and gastro-intestinal side effects.

Chronic pain sufferers, as a general rule (exceptions exist), have a love-hate relationship with these substances and have to strike a balance between the quality of life subtracted by the pain versus the quality of life subtracted by the side effects. I take a handful of pills three times a day, a considerable chunk of which is devoted to side effect amelioration. My pain is kept pretty low, so low that I’ve tried to disengage from the pain meds a number of times, only to be beaten back into submission three or four days later by a pain spike that takes a few weeks to get back ahead of. If I could take a handful of chocolate chips instead…honey, you better believe I’d be on that like fudge on a sundae.

I’ve spent years – literally – drawing a canyon in the sand between woo and science-based medicine, firmly planted on the take-your-woo-and-shove-it side of it. The whole industry infuriated me; it was all fake, and I felt that the snake oil salesmen perpetrating their supposed chakra misalignments knew it was fiction and took people in anyway, ethics be damned.

Now I have to concede that at least some of these people may honestly believe what they do works because they’ve undergone the treatments themselves and the treatments worked for them. Now I understand the vehemence of the arguments I’ve gotten into with people about acupuncture. They are as certain that it works as I am that it doesn’t and we’re both right.

What a mess. My scientific brain is tied up in knots.

Now, this is just one study. Replication (or lack thereof) would go a long way towards helping me sort this out. I don’t want people to be taken in; it makes me seethe to see desperate people throw money at charlatans.

But even more so, I don’t want people to be in pain. Physical pain takes over your sense of self, and may actually permanently rewire your body’s pain signaling network, and not to good end. Pain envelops you like a shroud, pushing the rest of the world out. Everything else seems little, expendable, pointless in comparison. If I could spare a single human being that experience by sending them to a naturopath, would I do it? If I knew that it would work?

What would be the right thing to do?

I was so sure, before. Now, all of a sudden, I don’t know.

Posted in Book Two - Mind, Setting 2 | Tagged , , , , | 1 Comment

handle

I am back in graduate school once again, this time in a writing program as opposed to a science-based (or rather, laboratory bench-based) program. During the first class last week, the professor warned us, as if I needed the warning, that just as college was exponentially harder than high school, graduate school would be exponentially harder than college. To which I just grinned ruefully and nodded.

Not that it’s any big secret on this blog, but my first jaunt into graduate school was a category-five, apocalyptic-level disaster. I was still in a lot of pain, did not know I was autistic, and had no idea that I had landed in one of the most competitive programs in the country. And by competitive, I don’t mean exclusive, although I suppose it muse have been. I mean that it was a cut-throat working environment where everyone fought to stay in the PI’s (Principal Investigator) good graces each and every week, at a lab meeting where the PI would grind anyone into powder who hadn’t produced lab results on which a paper could be based. I spent a lot of time being powder.

It was, in fact, a paper-producing operation, pure and simple, and oh, by the way, at some point you might actually get a graduate degree, if you ever had time to take a class, and pity the poor students who were student-teaching while trying to make all this happen. I was trying to take two classes and learn how to do lab experiments at the same time, and I completely fell apart. I almost failed the classes, never produced any results on the bench that were worth anything, and dropped out after a single semester in hopes of having done as little damage to my future career as possible.

To say that I had some trepidation wading back into grad school only a few years later would be an understatement. I put it off by a semester after my application was accepted. I tried three separate times this past year to talk myself out of it. I waited until a week before classes started to apply for a student loan. If there had been another way to drag my feet, I would have found it, offered it candy, and let it sleep on my futon.

Still, here I am. And it’s…not hard.

All this time, I doubted I was graduate school material. I thought I might have hit my ceiling. I thought there was no way I could add one more thing to my schedule, which, since changing careers, has been more demanding with regards to time (although far less so with regards to people, making it a net win).

I gave myself lots of time to tackle the reading material and writing assignments from last week, but I flew through them. Apparently, I’m more than capable enough as long as I’m not trying to decipher phylogenetic trees or heat maps, or genetically crossbreed worms the size of eyelashes.

Instead, it’s all language. Written articles about different forms of writing. No graphs. No figures. No two-way ANOVA tests for significance or Kolmogorov–Smirnov tests to see if the data follows a normal distribution, or any other tests for congruence or variance or whatever. Which, paradoxically, only ever told you what your chances were of not being wrong. Which, if you ask me, is a depressing way to go about one’s business.

But. Back to now. Class is fine. No trouble at all with the work.

New wrinkle. I’m so, so different from the other writers in the class.

To start, they’re all much, much younger than me, some an easy ten or fifteen years, many young enough to be my children. I don’t really have a problem with that – it didn’t matter the last time I was in school – but because of it, they have not been writing enough, or perhaps not been asked to write in such a way, to develop a style or a voice of their own. The writing is technically good, which is nice, actually, because with all the editing I’ve been doing, I had been starting to wonder if anyone ever learned to write at all any more. But it’s bland, it’s academic, it has no forward motion or sense of place; it doesn’t feel like a person is speaking. It’s just words.

Now that I’ve learned how to communicate in a socially acceptable way in interpersonal settings, the only place where I can speak like I do in my head is in my writing. And my head has Asperger’s, and is sharp, direct, unfiltered, and not nearly so concerned about offending people as I am in real life. I thought my ability to put thoughts into words in such, ahem, dramatic fashion was a feature of my writing. I thought that was what made it good.

Does it? Or does it just keep it from being useful?

I visit the student blog almost every day, looking for new posts, trying to learn about my peers, to see if there is one I have something in common with. But I can’t get a bead on them. The only one who revealed anything at all about himself was a man who’d been working as a technical writer for the better part of a decade, and had developed, whether purposefully or not, something like a voice, at least to some degree.

He also happens to be good-looking in a clean-cut-hipster-y sort of way (moustache, ugh) and one of only two males in the course, so of course, the girls are all over his posts. “So honest!” “So brave!”

No. Brave is what I do, here, on this blog. But my classmates haven’t read my blog. They don’t know what’s happened to me, how my writing developed, how I’ve learned to be unafraid to sharpen it and cut with it, drag and be dragged with it. My posts on the student blog have been open and unabashedly opinionated. After seeing everyone else’s, though, I wonder if I’ve managed to alienate the entire class in the space of a single week.

In addition to writing a couple of posts, we were also supposed to comment on one another’s work. In discussing health communication, one woman wrote how an abuse of communication is when addicts go on the internet to look up symptoms so they can go to the emergency room and get the doctors to prescribe them drugs.

There were no statistics. No citation. No other examples were provided. I responded by saying that statements without proof were dangerous and that as communicators we had a responsibility to be careful with our words and to support what we say. The volume was pretty low by my own personal standards, but it probably seemed pretty harsh to my classmates. What a bitch, they probably thought. I hope I don’t have to work with her.

There are two tracks, one for technical writing and one for science communication. I’m on the former, but I think I may belong on the latter, which involves more rhetoric, more carrying a message as opposed to facilitating an action. Not that I can’t facilitate an action, but if I’d had to write manuals for some of the products I’ve used, well…I don’t think anyone would have liked what I came up with.

I could pull my personality out of my writing, I suppose, but… I don’t want to. This is the fun part. It’s my favorite time of day. Throw open the gates and let it all go. If writing for a living means not doing that, I’m not sure that’s something I’d be capable of, day in, day out.

This time, I’m uncertain about graduate school not because I can’t handle the work, but because the work may not be able to handle me. And then what do I do?

 

Posted in Book Two - Mind, Setting 2 | Tagged , , , , | 2 Comments

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 my jaw becomes permanently clenched up around my cheekbones. 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 points 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; each one represents a unique and maddening complex 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.

Posted in Book Two - Mind, Setting 1 | Tagged , , , | Leave a comment

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