closed

Filip Kominik

Don’t expect people to remember you have autism or realize what it entails. Most people, even those you might consider colleagues or professionals who received an advanced education in an area like psychology or social work, will have forgotten about it ten seconds after you’ve finished telling them. Unless you get the letters “ASD” tattooed on your forehead (and perhaps not even then), if you “look” like a neurotypical (whatever that is), people will assume that you know everything there is to know about being one, and will not take kindly to your mistakes, however innocent they may be.

I’m a GTA (graduate teaching assistant; I know I don’t have to say “graduate” but I am still surprised that I am in graduate school and actually handling it). The other GTA [sic] and I hold office hours in a common area outside one of the professor’s offices, where a table and chairs have been conveniently set out. These chairs are cushioned and lime green in color. I point this out because most chairs on campus are neither of those things.

Other professors sometimes meet with this professor in her office during these same office hours. About two months ago, give or take, they were carrying on and laughing so loudly that I had to close their door. This was greeted with an additional peal of laughter.

I have worked in certain types of organizations where I have closed doors of executive’s offices so they may continue with non-public phone conversations, as a courtesy, so they didn’t have to get up. I was under the [mistaken] impression that there was nothing wrong with this behavior.

Why am I carrying about office doors, you might be wondering?

Today, when I arrived at office hours, the professor was having a conference with a student. I assumed, and may have even been correct in this assumption, that the student would not want a TA sitting at the table outside and listening to their conversation. So, silly me, I went over to close the door.

“What are you doing?” the professor demanded.

“Uhhh…”

What does it look like I’m doing?

“…I, um, thought you might like some privacy.”

“Leave it. You shouldn’t go around closing other people’s office doors.”

Really? And how the f*** am I supposed to know that? I’ve accumulated a great deal of knowledge about social conventions, but I missed the subsection on leaving office doors open.

Thoroughly humiliated, I stammered an apology and set up my laptop on the table to start working, although of course, I wound up writing this instead.

When I applied for this job, I was very upfront about my autism. I explained how it affected my thought and learning processes. I explained the context-free environment that ASDs find themselves in most of the time.

This particular professor, who was at that interview, has a Ph.D. in social work. She knows, or should know, all about autism. But instead of thinking, “hmm, someone with autism might not get this thing,” she shut me down, in front of a student, no less. And of course, I’m sure she thought nothing of it and has probably already forgotten about it, while I am still smarting from being berated for something I had no idea was wrong. Full stop, end of story.

She left shortly after the conference was over, leaving me no chance to explain myself, even if it had occurred to me to do so, which it didn’t in the short window of opportunity that presented itself.

I know I don’t get to control what people think of me. But the main reason I am open about my ASD is to increase awareness in non-autistics of what it is like to interact with an autistic, even one as seemingly capable as myself. (“Seemingly” being the key word in that sentence.) I had thought, for some reason, that mental health professionals would welcome this exposure, and maybe not even need to be reminded about it. What can I say? I’m an optimist.

OK, fail, so much for that plan.

I do not want to have a little chat with whomever it is about what autism entails every time my speech or behavior fails to meet neurotypical standards. Most of the time I’m not going to know because our social conventions preclude calling people out for failing to meet those standards, anyway. So I guess I should be grateful that the professor was “kind” enough to set me straight?

Except now, I have no rule. Some people don’t mind if you close their door, but it appears some people really, really do. Now I will have to ask every single time, which will be unnecessarily fussy and weird probably 99% of those times, because apparently, certain individuals are extremely sensitive about it. Great. Like people don’t already think I ask too many types of these questions anyway.

Just another day.

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eating my lunch

It was a simple story, testing the global coherence abilities of those on the spectrum. The story talked about a character wanting to decorate a bare wall. She goes to look for a painting, but can’t find one she likes. So she goes looking for a big clock.

Why was she looking for a clock? the test asks.

My brain says, “because she wanted a big clock,” or “to make up for not being able to find a painting.”

These are not the correct answers. The correct answer is “to decorate a bare wall.”

So here I am, reading the peer-reviewed article about this study, which discusses this test in fine-grained detail, fully aware of the parameters of the test and what the correct answer should be, and two incorrect ones pop into my head of their own volition anyway. Apparently, not only do I fail at global coherence, I fail spectacularly, even when trying not to. It is as though my brain willfully forgets anything not immediately and precisely related to whatever is right in front of me in any given moment, even if it was only a couple of sentences removed.

This is not what I’m supposed to be doing, by the way, writing a blog post. I’m supposed to be working on a literature review for a research proposal. But I’m stuck on the fact that I’ve been turning this big clock thing over and over in my head and it still doesn’t make sense. I just don’t get it. What does looking for a big clock have to do with looking for a painting? How did she get from painting to clock? It feels like there is a phrase missing, a piece of information that would explain the jump.

I realize, intellectually, that the only information necessary is found in the first sentence containing “decorate a bare wall,” but my brain is insisting that can’t be right because that phrase doesn’t have painting or clock in it. So how does a neurotypical (NT) know that it’s related? What am I missing?

And paradoxically, the more I think about it, the less sense it makes. It’s just an example, you might be thinking. It’s not a real person.

But that doesn’t really help. I don’t understand why that’s relevant, or why it would even come into the conversation in the first place. Are hypothetical people held to different standards than real ones? Why? What are the differences? And, more important, how do you know which is which?

It makes me wonder how I’ve ever managed to learn anything at all.

It’s a little frustrating to run up against these global coherence and ToM (theory of mind) tests in research articles, pop open their hoods, see what’s inside them and what they’re supposed to do, and still not pass them. I suppose I have no-one to blame but myself for running towards what makes me different from other people rather than away from it. I have to remind myself that I’m doing this in an effort to help NTs and autistics understand one another. So here goes:

Take the following sentences:

(A) She finished the rest of her lunch.
(B) She ate her sandwich.
(C) She opened her lunch bag.
(D) She threw the bag away.

To non-autistic people, these items are out of order, the correct order is obvious, and they probably rearranged them properly without really thinking about it; C, B, A, D.

To someone like me (a high-functioning woman with Asperger’s who appears normal in virtually every capacity), none of that is obvious. The statements seem totally unrelated, and the fact that it is simply because they are out of order (and that I put them that way, no less) just slips under the water without so much as a ripple. Worse, instead of noticing the wrong order and fixing it, my brain gets stuck trying to make the wrong order work.

This is how information appears to those on the autism spectrum most of the time; lists of apparently unrelated items which, if not provided in precise, temporal fashion, without any skipped steps or thoughts, we cannot make head or tail of. It’s only by taking all four phrases as a whole that the scene is revealed, and for whatever reason, our brains just don’t do that. It’s been termed “global precedence.” It occurs naturally in NTs, and we ASDs must fumble along without it.

The idea that the items might have been presented in the wrong order is only stumbled upon after overturning several other possibilities–if it occurs to us at all. This impairment in processing global phenomena is so persistent that even though I arranged the previous sequence of phrases out of order on purpose, with full knowledge of what the intended order was supposed to be, my brain remains stubbornly unwilling to rearrange them because of the order in which they’re presented.

The fact that there is no “she” and I created this entire exercise out of whole cloth just minutes ago is, unfortunately, of no use whatsoever. There it is on the page, and therefore it exists, and so does “she.” In fact, this “she” is now a real woman who opened her lunch bag after eating her lunch and threw it away, and I can’t figure out why. I’m thinking maybe she didn’t like what she packed for lunch and bought something else. Or maybe she forgot she brought lunch until after she ate.

If this sounds utterly ridiculous, well, welcome to my world. Ridiculousness is a part of the daily autistic experience. I think one of the reasons my anxiety is so persistent is that much of the world appears this off-balance to me much of the time. Very little makes sense. I’m just used to it.

The more I think about it, the more maddening it becomes. I feel like I ought to be able to teach myself to think differently, especially after all this time, but for whatever reason, there’s a gap between understanding what I’m supposed to be doing and simply being able to do it. It’s like driving from New York to California by way of Alaska. I mean, I’ll get there. (Two weeks after you, maybe, but dangit, I’ll get there.) But for whatever reason, I can’t just go straight from one to the other. That route is not one of the options my brain has to offer. (Luckily, I’m patient and tenacious; other people might have given up once they cleared Manitoba.)

Many times I think to myself that I just don’t want this. Yes, it’s important to me that others like myself are given every opportunity to function and work in a neurotypical environment, and I realize that my ability to see so clearly what others don’t is precisely what makes me so useful to the autistic community. But there is also a petulant little part of me that wishes that people would just say what they fricking mean and be explicit about their assumptions because having to guess all the time is unsettling, not to mention tiring. Even though I’ve learned to be a good guesser, I still don’t really know anything. It’s like studying another language but never actually assimilating it. I can communicate with neurotypicals, but my brain has to translate in order to do so; into autistic on the way in, and back into neurotypical on the way out.

It would be nice, every once in a while, if someone else made an effort to learn my language. It might be why I’ve learned enough Vietnamese to thank the woman who does my nails in her native language, and why I try to exchange pleasantries in Spanish with the my downstairs neighbor and her husband and son. I feel like I understand, even if only tangentially, what it’s like to be surrounded by people speaking a language you had to learn to understand.

Don’t get me wrong. Being an immigrant or other minority in this country is much harder than being a white, college-educated, native-English-speaking autistic; I am still awed by how much better my downstairs neighbor is at English than I will ever be at Spanish, and by how capable she appears and how effortless she makes her life seem.

Then again, I feel that way about most people. Another part of the daily autistic existence is frequently wondering how NTs know what they know. How they always just know what to do, what to say, how to act. I’ll never really know what it’s like to just “know” things.

But I will definitely say how much I like your new big clock, and how it livens up the room. I’ve learned that much. And that’s much better than knowing nothing at all.

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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 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.

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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