sound and fury

animal-animal-photography-barbaric-561870

At some point, this will end. Nothing lasts forever. It will stop. It will.

Yesterday, I sat through an hour and a half of torture. And I knew I had to write about it, even though there seemed no way to describe it that didn’t make me sound hysterical or crazy. So this is my attempt, for those on the spectrum like me who have trouble explaining such things, and for neurotypicals who have trouble understanding them.

It doesn’t happen as frequently as it did when I was a child, but every so often, a stimulus will overwhelm every single coping mechanism I’ve so painstakingly taught myself over the last twenty-odd years. I was at a friend’s birthday party a couple weekends ago and could not concentrate on a conversation because the smell of Doritos was so overpowering. I lost all ability to focus and had to walk away.

Yesterday, I endured a wretched ordeal that transformed a chunk of my afternoon into a hell from which I couldn’t escape, yet another experience that underscored that I am more than just your garden variety introvert.

And what was this horrific torture?

A voice.

Certain sounds cause physical pain to persons on the spectrum. For me, vocal fry is one of those sounds. Whether it be my awareness of how it is produced or the frequency of the sound waves themselves (or both), I simply cannot listen to it for any length of time without wanting to crawl out of my body.

For the uninitiated, vocal fry is the term for a specific style of speaking. The vocal cords are stretched tightly at the lowest pitch the speaker can produce to yield a thin, rough, atonal timbre. Experts have theorized that women do this to sound more masculine and thus be taken more seriously by their male peers, despite the fact that both men and women have reported finding the sound rather unpleasant.

What I wouldn’t give for it to be merely unpleasant, rather than producing a sensation similar to sand paper being rubbed on the back of my throat.

I was accompanying a class to a nonprofit, and in fact, I’d been looking forward to the field trip. But once the presentation began, the flat, harsh tone of the woman speaking was so distracting I couldn’t concentrate on what she was saying. Which was upsetting, because I was very interested in what she was saying; one of the reasons I’d accepted the teaching assistant position for this course was to work with the very people whose organization we were visiting.

I wanted so desperately to be able to simply absorb the information. I tried to take notes, but they were choppy, with large gaps; I kept losing the thread of the discussion. I couldn’t ignore the sound; I might as well have been a sitting next to a jackhammer. Today, my jaw is sore from having been clenched for ninety-plus minutes. My neck and shoulders ache from the rigid posture I froze in as my body tried to protect itself. It felt as though my skin was being peeled off, my whole body a scab debrided, raw flesh exposed to the air.

Finally, it was another woman’s turn to speak–and she employed the exact same vocal effect. In fact, all five women in the department used it, perhaps subconsciously reinforcing the choice among themselves. Every one of their voices was like acid poured in my ears. One was so gravelly that my verbal decoding failed utterly; I have no idea what her position entailed or why she was even there.

About halfway through, I despaired of being of any assistance to the students. I couldn’t get away from the pain the noise was causing me. I felt trapped and powerless. I thought about excusing myself, but was worried it would set a bad example. Even though both the students and professors know I have Asperger’s, it seemed impossible to explain why I needed to leave.

Yesterday was a success, I suppose, since I stuck out the entire presentation, but it left me traumatized and exhausted, and reminded me that there is this part of me that will never be fully managed. Lest I forget, my autism can still incapacitate me without warning. What if I were a speaker on a roundtable sitting next to that voice? On a call with an important client? Discussing an illness with a physician? What would I have done?

For people with an ASD, it takes a certain amount of energy to focus on the right components of our surroundings, or rather, to not focus on the ones we’re not supposed to pay attention to. I was frequently accused of not paying attention as a child, though I was certainly paying attention to something, albeit heaven knows what. At least as an adult, I know what I’m supposed to lock onto, and can exert myself to maintain that focus where necessary. Usually.

From time to time, like yesterday afternoon, I fail spectacularly. I react disproportionately to a certain sound, sight, or smell, and the rest of the world is just gone. I’m stuck, my brain is screaming, every fiber of my being is begging me to run away, and anything else I might want to be doing slips maddeningly out of reach.

Sometimes, I like my Asperger’s. I like my peculiar way of looking at the world, the divergent paths my thoughts take, and the unique perspective I have on human interaction. But sometimes, like yesterday, I would trade every last scrap of it to escape the cruel highjacking visited on me by whichever wayward neurons were activated when that woman began to speak.

We’re hooking up with the organization again next month to tour another facility. I don’t know what to do. Maybe I won’t be as sensitive that day? Sometimes second exposures are less dramatic. Then again, sometimes they’re exponentially worse. And I can’t simply avoid all women who speak this way; I’m sure women in positions of power everywhere utilize the technique, else why would we have a word for it or a body of research surrounding it? How am I supposed to avoid an entire generation of women? Most probably don’t even know they’re doing it. I could record it and play it back to them and they would wonder what I was making such a fuss about.

I just wrote a post about how introverts don’t need special treatment; I still don’t believe they do. But people on the spectrum? My hard line softens a bit on this one. Most of time I favor a suck-it-up mentality, but every once in a while, my autism pins me to the wall and I fervently wish I could file down the world’s edges.

Ear plugs, maybe? It’s not like I haven’t had to explain such eccentricities before. You don’t eat fruit? Are all your shoes too big? Why is there a bag of bubble wrap by the front seat of your car?I’m sure I could come up with some excuse, at least for the tour. But it’s not exactly a long term solution; I can’t wear them everywhere. Not to mention that the feeling of ear plugs in my ears can only be withstood for so long.

This is my life. These are the kinds of things I have to deal with while other people are going about their daily business. I wish I could do what they take for granted, just show up wherever and do whatever needed to be done without worrying that one of the fluorescent bulbs might start flickering and send me into a tailspin. I wish the act of leaving my home wasn’t fraught with uncertainty about what I might be exposed to. I wish I didn’t always need to know where the emergency exits are.

Would I still be me without the autism? When I read articles about potential treatments I wonder if I wouldn’t undergo one even if I could, for fear it might change an essential part of me. But how essential is it? Doesn’t it do more harm than good, more often than not? Wouldn’t I be better off without it?

Some days I think I just might be.

Crossposted at THE ASPERGIAN

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introversial

Mark Oppenheimer, in “How to raise an extroverted child in a world that loves introverts,” (Washington Post) claims that we operate in a society that values introversion over extroversion. He has the audacity to say that “there is definitely something self-serving, brilliantly so, in the militant introverts’ argument that they are superior — calmer, more patient, more compassionate — yet always vulnerable,” suggesting that introverts are conspiring to take over an unsuspecting extroverted society and mold the world to suit themselves.

Made-up issues such as this one are not helpful as a rule, and this one, with its egregious lack of grounding in reality, is worse than most. Extroverts are the ones who thrive in the modern world, a world that values putting yourself out there, being open to new experiences, and always looking for new connections and new opportunities. (In case you were wondering, these are not things which introverts tend to enjoy.) Suggesting that introverts are “brilliantly” self-serving in their supposed superiority implies a level of self-centeredness that even a narcissist would blush to admit. I hate to break it to Mr. Oppenheimer, but introverts do not think about extroverts, the world, or their relation to either of them to anywhere near this degree of depth.

The introverted stereotype Oppenheimer describes as “both special and especially oppressed…they have unique wisdom but also need unique care” may make for good copy, but it is pure fiction, probably sprung from television’s recent obsession with antisocial lead characters (see “The Good Doctor” or “House”). The real world has little use for reserved, non-social people. Introverts certainly do not think of themselves as possessing some special wisdom that extroverts could never achieve. That is all the food of Oppenheimer’s apparently overactive imagination, and seasoned with no small amount of petulance, I might add.

For the record, being introverted is not a disability you can claim reasonable accommodations for, nor is it something you can put on your resume alongside a preference for being interviewed over the phone. Our culture values socialization over solitude, friendliness over reticence, and fearlessness over caution, and suggesting otherwise is dismissive and insulting to introverts who struggle against their natural inclinations every day to fit themselves into said culture. The world does not “love” introverts. It fetishizes them. That is not the same thing.

Sometimes, people are duped into thinking that art reflects life. If that were the case, however, everyone would flip houses, doctors would never shave, and “introverted” men would frequently find themselves in situations they had to shoot their way out of. Media is not reality. Introverts are not delicate, magical creatures bent on taking over society.

In fact, all we really want is to be left alone. Thanks.

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two and one

mirror touchPhoto by Jenna Hamra

Normally, the holiday season fills me with a sense of joy, peace, and hope. I love everything about Christmas; the decorations, the traditions, the music, and especially the Christmas story. I very much relate to the idea of love and hope being born in the depths of winter. I arrive at the end of the year relieved and grateful, and excited for a fresh start.

I felt none of those things this year. I came around to decorating my home, something I usually go a little crazy doing, only after I decorated the office where I work and thought maybe I should try to coax myself into the holiday spirit by doing the apartment. I did all of the holiday things I normally do, playing hooky, getting my nails done, cooking and baking. I had a lovely holiday with my family and friends, restful, relaxing, fun, and drama-free. I couldn’t have asked for more. But through it all, a sadness lingered, a feeling of disconnect with how people treated me and what I saw in myself. I still see myself as unworthy, a child in grown-up clothes play-acting at being an adult. I still feel like the scared, confused little girl I was growing up, who no-one liked, who didn’t understand why no-one liked her.

But of course, I’m not that little girl. Intellectually, I know that I am a fully-realized, functional, mature human being. I know how to be a good friend, a good sister, a good aunt, a good daughter. Unlike many on the spectrum, I can move among my peers and co-workers with relative opacity, with no-one having any idea that I have Asperger’s, that what they see is not natural but an elaborate and now virtually automatic construction.

I no longer even really mind that it is a construction; rather, I am proud of it. I worked hard to learn to understand people and develop relationships with them over the last two decades, and I’m still trying, and learning and improving. I have come so far! But the dissonance persists. Everyone sees me as a whole person. Everyone, that is, except myself.

My therapist said that I have done such a good job of being useful that I doubt whether I would be desired otherwise. That I feel that if my friends and family didn’t need me around they wouldn’t want me around, and that need to try to figure out why that might be.

It’s terribly upsetting. Because it’s true. I don’t know if it is a result of misunderstanding and being misunderstood for so long, or if I came out of the box this way (or both). But I have been unable to accept the idea – the truth – that I am not a failure, or an accident, or a mistake. That I’m not a bad or mean or incompetent person. In fact, my loved ones are proud of me. Friends and co-workers are proud of me. Even strangers are proud of me. The only person not proud of me is me.

I can no longer blame this on my circumstances. The only negative feedback is coming from the inside, and no event occurring in my external life affects it. It doesn’t matter what I do, how much money I make, or how many obstacles I overcome; I keep waiting for that one final achievement to prove that I’m worthy of being called an adult, even though I don’t know what it would be, or how I would know it if it happened. (Maybe it’s already happened?) I have been treating my outward persona like an act, and only partially because of the effort that goes into projecting it. I’m stuck on the idea that it’s just the person I want to be, not the person I actually am.

But what is the difference, really, between thinking, feeling, and acting like someone, and being that person? I’ve lived as two people for so long, one inside and one outside, that I’ve taken the duality for granted. There’s who other people see, and there’s who I really am, and they are totally different, and that’s just how it is. No-one ever liked the “real” me when I was growing up, so why would they like it now?

Except, the girl no-one ever liked never actually existed. It is not who I was, and especially not who I am now. It was a misunderstanding, an assumption borne out of a lack of knowledge, on both sides, of my neurodivergence. I see that clearly in retrospect and my heart goes out to the little girl that lived through that experience. But I am grateful, too, because it made me who I am, someone who doesn’t tolerate the mistreatment of others. And I am incredibly grateful for my friends and family who saw past my Aspergers to the person underneath. And I have been able to use my experience to inform my interactions with others. I have learned the social language that allows all of us apes to get along and develop attachments to one another.

I did that. Because I wanted to. I wanted to have friends and be a friend, to like and love and enjoy being with other people, and be liked and loved and enjoyed by them. And if I made that effort, and still make that effort, doesn’t that count for something? If it’s who I want to be, and who I strive to be, then why isn’t it who I really am, inside as well as out?

It’s hard to let go of the dichotomy. It is a crutch that allows me to explain away my worst impulses, my shortcomings and failures, which all align with the conviction that I’m not “really” a good person, I just look like one. Because if I were a good person, there would be no excuse for ever acting like a bad one, even unintentionally. Since I’m a bad one, however, bad behavior is expected and all of my f***ing up makes sense. I’m still punishing myself for all the times I screwed up because of my Aspergers (or not), and constantly striving to balance it out with unrealistically high standards of behavior that I never attain because – wait for it – I’m not really a good person. Makes perfect sense, right? Nothing wrong with that line of thinking,

The advantage of writing out your thoughts is that you get to see how ridiculous they are.

Until now, I never entertained the possibility that I think and act and feel the way I do because it’s who I am. I haven’t learned how to act like someone. I have learned how to be someone. I have learned how to make the person on the outside match the one on the inside, not cover for it. A work in progress, of course, but more than adequate. Road tested and passed, lots of roads, lots of tests. It’s time to take myself off probation.

There aren’t two different TGAs. The dissonance is not inherent; it’s a coping mechanism developed years ago to shield me from the pain of my spectrum-related social challenges. But I don’t need it any more. The bones have healed and I can bear weight on this self. And I have proven that, time and again, over these years of pain and challenges and renewals.

I just need to believe it, deep down, and remember it in times of self-doubt, and work on convincing not just my head, but my heart, of the truth of it. Speaking of works in progress, this will be a big one. But today is the first day of a new year, and this year, my resolution is to stop thinking of myself as an elaborate fake and start thinking of myself as being the person my loved ones see. It’s terrifying (what if I’m wrong?). But it feels important, like the next step in my journey as an individual on the spectrum learning how to function in a neurotypical environment. Now that I’ve learned to behave like a socially habituated human, I need to learn to believe that’s what I am. Because it is.

Starting right now, this minute. I write it here so I can hold myself accountable. I am a good person, a worthy person, a real person. It will be hard to remember all the time, but the only way to get better is practice. So I will start practicing. Today.

Happy New Year.

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

directions

donotenter

I had a doctor’s appointment last week. When I approached the office front door, there was a handwritten sign indicating the lobby was closed for repairs, and that I was to use the second entrance on the right.

I stared at it for a moment. From where I stood in the hallway, facing the door, the elevators were to my right. There were no other doors in that direction. I didn’t know where to go.

Patrick Moore reveals in his article “When Politeness is Fatal: Technical Communication and the Challenger Accident” (1992) that “association clues require that the speaker and hearer share some specific knowledge based on past mutual experience or some common element in their background” (Moore 1992). Interpersonal communication, then, is informed by shared knowledge.

I mean, yes, of course it is, but until I read the article, I’d never heard it articulated, nor had I thought about it in the context of my own experience. Here was yet another gem relating to interpersonal communication that had escaped me. No wonder people still occasionally look at me askance when I change the subject. The jump may make sense to me, but I’ve left our common ground behind and struck out on my own, and the necessary shared context is lost.

“Association clues require that the speaker and hearer share some specific knowledge based on some mutual experience or common element in their background.” – Patrick Moore

The miscommunication upon which Moore focuses is that which occurred on the fateful morning of the Challenger disaster, when the engineers at Rockwell International (the company that helped design and build the space shuttle), upon facing an array of superiors at NASA bent and determined to launch the damn shuttle after weeks of false starts and delays, underplayed their misgivings about the launch (due to a factor unrelated to its failure, which must be mentioned). Their ambiguity enabled NASA to presume that they were approving the launch, even though what the engineers had meant was exactly the opposite (Moore 1992).

Moore makes the argument that the unwillingness of the Rockwell VPs to be “impolite” (blunt) ultimately doomed the Challenger. From my perspective this seems unfair, since the Challenger launch failed for reasons unrelated to their concerns. And it seems a bit facile for him to make assumptions from his six-years-removed viewpoint; in hindsight, people are always sure they’d do the right thing, despite the fact that doing the right thing in the face of uncertainty and pressure is much harder than it sounds, as anyone who has succumbed to the bystander effect knows.

In my case as an ASD, I usually have the opposite problem from the Rockwell scientists. I have to build in vagueness to what I say and soften and dilute negative opinions when expressing them so people don’t think I am an odd, uncouth, blunt, rude, or otherwise unpleasant person. Apparently, normal people don’t ever express truly negative thoughts about anything. It’s almost like a game for me now, to see how ambiguous I can be and still get my message across. (If anyone is wondering, I still haven’t found the fence.)

When Moore quotes Brown and Levinson’s (1987) affirmation that “people cooperate (and assume each other’s cooperation) in maintaining face in an interaction, such cooperation being based on the mutual vulnerability of face,” he puts his finger on an important distinction between neurotypicals and ASDs, in that two NT people from the same culture assume a set of information that is appropriate to discuss accompanied by a shared conviction that to stray from this set would be embarrassing to one or both parties.

People on the autism spectrum, however, don’t have access to this set of information and are hampered in our ability to divine appropriateness. We do not assimilate it as children the way NT individuals do. We don’t construct the natural barriers that prevent people from stepping outside the bounds of this set, the very barriers that prevented the Rockwell engineers from laying down a blunt “no-go” to NASA. It isn’t that they didn’t want to. They simply couldn’t; to do so would have been an extreme breach of cultural protocol so deeply ingrained in NTs that it is virtually impossible for them to break.

With regards to avoiding detrimental communications in the future, Moore discusses standardizing language and creating more robust protections for whistle blowers, both of which are important and workable solutions. But I couldn’t help but consider whether or not installing individuals on the spectrum into positions where blunt transmission of information is critical might not be useful, even lifesaving. A lack of the shared politeness barriers that can make people with autism difficult to be around also endows them with an important advantage over their neurotypical peers in certain situations.

“installing individuals on the spectrum into positions where blunt transmission of information is critical could be lifesaving”

It’s an interesting thought exercise to wonder, if one of those Rockwell engineers had had Asperger’s, would his doubts about the safety of the launch been transmitted more directly? (Possibly to his detriment, of course, but one of the perks of being on the spectrum is that such consequences are rarely anticipated.) It has been suggested by some that autism is the selection of a particular set of traits that are suited to particular environments; might this not be one of those environments?

Back to the sign in the hallway. Since there weren’t any doors to my right, I turned to my left, and there was a second door, which was open. It was at that point that I realized that the open door was, in fact, the second door on the right, as one was walking down the hallway. But as I have mentioned often, those of us on the spectrum navigate a context-free world. Where the door might have been in reference to my position as I was walking down the hallway vanished soon as I stopped to read the sign. It’s a small but important difference. When asked whether I have a sense of direction, I like to say that when I turn, the whole world turns with me. I can’t visually orient myself in a space; it’s just one of those things my brain doesn’t do.

If I had written the sign, I would have drawn an arrow pointing in the correct direction and written, “Please use the second door,” without right or left designators, because I would have imagined myself in that very spot and wouldn’t have wanted someone like me to be confused. Using the arrow stamps out any potential for misinterpretation as to the direction.

And when misinterpretation is a matter of life or death, perhaps someone unconstrained by cultural associations is exactly the person you want doing the communicating.

Moore, P. 1992. “When Politeness is Fatal: Technical Communication and the Challenger Accident.” Journal of Business and Technical Communication. 6(3) 269-292. http://journals.sagepub.com/doi/abs/10.1177/1050651992006003001 (access restricted)
Brown, C. & Levinson S.C. 1987. Politeness: Some Universals in Language Usage. Cambridge:Cambridge University Press. Google Books
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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