On Deciphering Informal Medical Language, from an “Aspie” Point of View

Confusion

Confusion

A major challenge for many Aspies (an informal name many of those with Asperger’s use for ourselves) is communication with the larger, non-Aspie population. Frustration and anger are common reactions to this challenge — sometimes from both sides. The reasons for this are known: these two parts of the population use language quite differently. Aspies tend to use and interpret language in absolute, literal terms, to a point that seems odd to most. Non-Aspies, by contrast, are often more flexible with use of language, and are (somehow) able to convey ideas between themselves using words which mean the exact opposite of their literal meaning. (Several examples will follow.) This difference is all that is required to explain why Aspies and non-Aspies often have trouble communicating with each other.

Just as with most people, Aspies are quite different from each other, but we also have some traits in common. For example, an intense urge to study and analyze some esoteric subject, which few others care about, is common — but the identity of that subject, or subjects, varies widely from one Aspie to another. My special interests all involve puzzles; I enjoy trying to figure out mathematical, scientific, and linguistic problems, in particular. Another Aspie might share none of those interests, but might be able to rattle off, say, hundreds of sports statistics, as easily as I can list the names of dozens of polyhedra. The existence of these “special interests,” as they are known, is (nearly?) universal among Aspies, but the topic of these special interests is not. For example, fewer than 1% of the Aspie population shares my obsession with polyhedra — a fact I know because the world’s most-focused “polyhedra people” are so uncommon that we have established many lines of communication between each other, enabling the formation of a rough estimate of this population. My estimate is ~300 people, worldwide. Even if I am off by a factor of ten, that simply isn’t nearly as many people as 1/10th of 1% of the world’s rapidly-growing Aspie population.

In my experience, medical terminology, in particular, has provided large numbers of baffling puzzles over the years. When talking to medically-trained professionals, I always let them know I am a teacher of science and mathematics. This lets them know that they need not hold back with medical jargon, which has a large overlap with scientific and mathematical jargon. I can understand it fairly well, and, when an unfamiliar term is used, I simply ask for a definition. When I need to, I take notes. If medical instructions are not clear, precise, literal, and detailed, people can die as a result. For this reason, such instructions generally are written in a precise, literal form of English which is a beter match for “Aspiespeak” than what we typically hear from non-Aspies.

On the other hand, when I speak to non-Aspies about medical subjects, I often get quite confused, and I suspect this happens with many other Aspies, as well. Examples follow.

“Nerve pills” — As someone who takes prescribed medication for the relief of anxiety (which is the way a doctor or pharmacist would likely phrase it), I have occasionally been asked if I might benefit from taking a “nerve pill.” Before remembering the translation of this term, I always think, and sometimes say, something along these lines: “I’m already nervous. Why would I take a pill to make me more nervous?” It’s the implied, omitted parts of the phrase, of course, that contribute to my confusion. As it is, this practice makes me wonder why we don’t call deodorant “oderant” instead, a term coined by Jerry Seinfeld, since that would make equally little sense, but would at least be consistent.

The related phrase “pain pills” elicits a similar response from me. Due to a fall over twenty years ago, I already hurt, and, sometimes, I need something that relieves pain — but I never need anything to cause more pain! Fortunately, the people I actually see for such medication, when it is needed, are physicians and pharmacists, and they use literal, precise terms for such medication. They also know the risks of such medication, and conversations with such people are important for anyone needing such medication, for obvious reasons: such medications should only be used in ways consistent with advice from doctors and pharmacists. Patients cannot obtain such advice without having honest conversations with these knowledgeable professionals.

The most confusing informal medical term like this which I hear, though, is the term “crazy pills.” I don’t hide the fact that I obtain professional help for mental health issues, and explained my reasons for this openness here. Most of those who do seek treatment for mental health problems, though, are not Aspies, and so it is quite common to hear such treatment, in the form of medication, referred to by this confusing term, which I must admit I intensely dislike. For one thing, the word “crazy” is not one to use lightly, due to the fact that it has been used, historically, to stigmatize those who need help maintaining or restoring mental health. For another, the literal meaning of “crazy pills” is the exact opposite of its in-use meaning.

The term I use to replace “crazy pills,” in my own speech, is “sanity pills.” Sanity is, after all, my preferred state, and that is the reason the psychiatry-related category on this blog is named “Mental Health,” not “Mental Illness.” Reminders that mental health is the goal are helpful; the opposite focus is not.

Puzzles like this (figuring out non-literal terms used by non-Aspies) are not my favorite kind; in fact, I don’t enjoy them at all, for little or no logic is involved, and any pattern which might help me learn these things more easily has, so far, eluded me. Non-Aspies seem to just intuitively “know” what such phrases mean, as if they got a memo which was deliberately withheld from Aspies — and that is, for me (and many of us), both baffling, and irritating. Can I understand these things? Yes, with difficulty — I have to figure them out, step by step, each time, due to the fact that they do not make logical, literal sense, and thus do not come naturally to me. In fact, studying calculus was easier than understanding these common phrases which nearly everyone else just seems to somehow “know,” as if the knowledge was sent to them telepathically, but deliberately withheld from me, for reasons unknown.

For a fictional depiction of Aspie/non-Aspie confusion, this clip from Star Trek: The Next Generation, while not medically-oriented, does illustrate this commuication-problem in a humorous fashion. When the character of Data was created, some “Aspie” characteristics were deliberately included, just as they were for Mr. Spock, his predecessor. Some Aspies have criticized the Star Trek franchise for these practices, but I, personally, think they have been helpful, in that they use humor to try to bridge the currently-existing comprehension-gap. This gap is not helpful, so anything that narrows it is something I like.

I Can’t Stop Listening to the Unsilent Quiet

An incomplete list of things I can hear right now:

1. The spinning of my laptop’s hard drive
2. The spinning of the blades of the exhaust fans that keep my laptop from overheating
3. This apartment’s air conditioning
4. The ringing in my own ears, which I blame on living in a noisy world
5. The “sixty-cycle hum” — a 60 Hz humming sound produced by pretty much anything running off alternating current (refrigerators are the worst)
6. The sound of my own fingers typing on the keyboard of my laptop
7. The whirling blades of ceiling fans in several places in this apartment, and adjacent apartments
8. Traffic on nearby roads
9. My never-ending internal monologue

Except during power failures, which shorten the list a lot, this is about as quiet as it ever gets here. Another person might call this “silence.” It isn’t.

There is no silence.

Ever.

Revise, and Re-install, Unconscious Mental Subroutine

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Sleep eventually takes your awareness from you, and, at the end, you don’t even resist.

Asleep now. Initialization of nREM startup program in progress.

Stop. Evaluate time elapsed since last sleep-reprogramming. Identify areas of concern.

Rank items of concern in priority order,

Schedule upcoming REM cycle to allow the “playing out” out of necessary “real-word” drama to address the top priority concern. Maintain focus on that concern until it is replaced by another one, new, and of more importance. Keep an eye on all areas of past conflict, while watching for new ones, hoping for early detection.

If unavoidable, implement “the best you can fake it” multitasking coping-mode.

Realize that memory of this sleeping activity will be fragmentary at best.

Know also, nonetheless, that you are the one one writing the program, at both ends of the consciousness-spectrum, the autism spectrum, and any other spectra I find myself standing on.

To answer the obvious question: yes, this blog-post is deliberately being written in the grey zone between sleep and wakefulness. If parts of it make no sense, that’s the reason.

~~~

Note upon waking: I found this, written but not published, on my computer, when my alarm clock went off. I guess I’ll post it now!

My Early Play with Informal Numbers, Such as Umpteen: A Look at Early Development of a Special Interest in a Young Person with Asperger’s

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As a young child (before I started school), my strong interest in mathematics was always there. No one knew I had Asperger’s at that time, but it is clear to me now, in retrospect, that I was a young “Aspie,” in the early stages of the development of a special interest.

I cannot remember a time without my math-fascination, to the point where I speculate that I was motivated to learn to talk, read, and write English simply to bring more of the mathematics in my head into forms which I could express, and also to gain the ability to research forms of mathematics, by reading about them, which were new to me: negative numbers, fractions, names for extremely large numbers, and so on. I would devour one concept, internalize it, so it could not be forgotten, and quickly move on to my next mathematical “snack.” The shift to geometry-specialization took many years longer; at first, my special interest was simply mathematics in general, to the extent that I could understand it.

I was too young, then, to even understand the difference between actual numbers, and informal numbers I heard others use in conversation, such as zillion, jillion, and especially umpteen, and, armed with this lack of understanding, I endeavored to figure out the properties of these informal numbers. Zillion and jillion were uncountably large: that much seemed clear, although I could never figure out which one was larger. Umpteen, however, seemed more accessible, due to the “-teen” prefix. It seemed perfectly reasonable to me to simplify umpteen to a more fundamental informal number, “ump,” simply by subtracting ten from umpteen, following the pattern I had noticed which connects thirteen to three, seventeen to seven, and so on. This led to the following:

1ϒ – 10 = ϒ (umpteen minus ten equals ump)

I wasn’t using upsilon as a symbol for the informal number “ump” at that age. Rather, I simply needed a symbol, today, to write this blog-post, so I chose one. The capital Greek letter upsilon seems like a good pick. I’m using it more like a digit, here, rather than a variable — although, when I first reasoned this out, over forty years ago, I had not yet learned to distinguish between digits, variables, and numbers, at least not using other peoples’ terms.

Occasionally, I would hear people use ump-based informal numbers (I grew up in Arkansas, you see) which clearly seemed larger than umpteen. One such “number” I heard was, of all things, “umpty-ump.” Well, just how large is umpty-ump? I reasoned that it had to be umpteen minus ten, with this difference then multiplied by eleven.

1ϒ – 10 = ϒ (umpteen minus ten equals ump)

10(ϒ) = ϒ0 (ten times ump equals umpty)

ϒ0 + ϒ = ϒϒ (umpty plus ump equals umpty-ump)

Factoring ump out of the third equation above yields the following:

ϒ(10 + 1) = ϒ(11)

Next, ump cancels on both sides, leaving the following, which is known to be true without the involvement of informal numbers:

10 + 1 = 11

Having figured this out, I would then explain it, at great length, to anyone who didn’t make their escape quickly enough. It never occurred to me, at that age, that there actually are people who do not share my intense interest in mathematics. (Confession: I still do not understand the reason for the shockingly small amount of interest, in mathematics, found in the minds of most people. Why doesn’t everyone find math fascinating, since, well, it is fascinating?)

What I didn’t yet realize is that I was actually figuring out important concepts, with this self-motivated mathematical play: place value in base-ten, doing calculations in my head, some basic algebra, and, of course, the fact that playing with numbers is ridiculously fun. (That last one is a fact, by the way — just in case there is any doubt.)

I did not distinguish play from work at that age, and considered any interruption absolutely unacceptable. This is what I would typically say, if anyone, including my parents, disturbed me while I was working these things out, but was not yet ready to discuss them: “I’m BUSY!”

Everyone who knew me then, I am guessing, remembers me shouting this, as often as I found it necessary.

A Recurring Asperger’s-Related Conversation

This conversation has happened more than once, since I discovered I am an “Aspie,” as many of those with Asperger’s call ourselves, and then received all the confirmation I needed from doctor of mine, without paying for expensive testing, and an official diagnosis. I did not seek testing and diagnosis because no treatement exists for Asperger’s — and I would not want one, if it existed, anyway. The conversation below is paraphrased, for the ideas involved matter far more than the exact words which were used — and, also, slightly different words were used each time this conversation happened.

Me:  “I’d like to share something with you. I’ve discovered one of the reasons I’m so different from other people — I believe I have Asperger’s Syndrome.”

Friends/Colleagues:   “Oh, we figured that out months ago! We were just afraid to tell you because we thought you’d be offended, and get angry at us, if we mentioned it.”

Me (laughing):  “Don’t worry about it at all! I’m not the slightest bit offended, nor angry. You see, I like being the way I am!”

Several of my friends figured this out before I did, it seems, but we all know about it now — and I prefer it that way. There is no shame in being open about being an Aspie — it is part of who I am. I would not want to be without Asperger’s, in fact, for a great many reasons. Other posts on this blog, in the “Asperger’s” category, explain some of these reasons, and I invite anyone who is curious to read any, or all, of them.

On Mental Health: My Reasons for Letting the Sunshine In

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There are quite a few posts on this blog on the subject of mental health, and they can be easily found by simply looking at that category, in the pull-down menu on the right side of your screen. In these posts, I have been quite candid about such things as my own panic disorder, PTSD, and Asperger’s Syndrome.

What I have not done, until now, is explain my reasons for my openness on this subject.

First and foremost, I am trying to do what I can to remove the stigma which surrounds the entire subject of mental illness. This stigma is harmful, for it keeps millions of people who need help from mental health professionals from seeking it, out of fear of being labeled and/or ostracized — or worse. I learned this the hard way:  by experiencing it. I had my first panic attack at age 16. Like most panic attacks, this one lasted perhaps twenty minutes, or less. Few people have panic attacks that last longer than that — unless they fail to seek treatment, and the panic attacks continue to happen, which is what happened to me.

Over time, panic disorder tends to become worse, if not treated. The fear of the panic attacks themselves becomes an issue, for those who have them frequently, and such fear can lead to people avoiding situations where they fear a panic attack would be particularly embarrassing, and/or debilitating — somewhere like, for example, the middle of a Walmart, or their church, or their workplace. In some cases, untreated panic disorder leads to full-blown agoraphobia, with some people actually reaching the point where they simply do not leave their homes at all — until they die.

In my case, I avoided treatment for my own panic disorder (or any other mental health problem) for about a decade, specifically because of my fear of the stigma of mental illness. I tried to keep my panic attacks a secret, but, of course, that did not stop them. They grew in intensity, and the duration of the attacks increased as well. A ten-hour panic attack — something which is incredibly rare — is what finally drove me to get over my fear of this stigma, and make an appointment with the man who is still my psychiatrist.

In the years that followed, I grew more and more disturbed by the existence of this stigma, and finally made a decision:  I would do whatever I could to neutralize it, for the benefit of others. I do not wish anyone to suffer the effects of deliberately delaying needed medical treatment. After much thinking, I eventually figured out one thing I can do, toward this end: be open about such matters, simply to help others know that mental illness can, with appropriate help, become transformed into mental health. In other words, as with many other illnesses, those with mental health problems can, and do, get better. This is why I have chosen the category-name “mental health” for these posts, rather than “mental illness.”

Of the particular struggles I have which involve issues of mental health, PTSD is the most difficult to treat . . . but I work hard, with the help of my doctor, to get better. What’s more, it is working, although I cannot claim this work is complete. I want everyone to know that getting better is a goal which is both realistic, and achievable.

With Asperger’s, my motivation for openness is somewhat different, for this condition is not actually a mental illness at all, as evidenced by the fact that it was recently “de-listed” from the latest version of the DSM (Diagnotic and Statistical Manual of Mental Disorders). Asperger’s Syndrome is simply a difference in the way some people think, as opposed to an actual disease. Some “Aspies” (our culture’s own nickname for ourselves), however, do suffer greatly, because of the difficulties involved in interacting socially with others, especially non-Aspies. I share what I have figured out, on this subject, with two goals in mind: (1) helping my fellow Aspies who struggle, and sometimes suffer, because of these differences, in any way I can, and (2) helping non-Aspies understand us better, so that these difficulties in interaction between Aspies and non-Aspies can become less of a problem — for everyone.

Finally, it simply feels good to no longer be trapped, in a metaphorical closet, regarding these things which are, after all, part of my life. As the saying goes, borrowed from the gay rights activists who invented it, “closets are for clothes, not for people.”

I much prefer letting the sunshine in.

The Five Fictional Characters Who Have Most Strongly Influenced My Life

These five fictional characters have strongly influenced me, and I will always be grateful to the brilliant people who created them. I am presenting them in chronological order — using the time when this influence started, rather than their date of creation.

#1: Snoopy

Snoopy2

When I was very young — before my memory-record begins, actually — I was given Peanuts books. They were simply left in my possession, as far as I know; no explanation was necessary. The antics of Snoopy, in particular, were extremely entertaining to the little-kid version of me. Since I could see Snoopy dancing around, playing baseball, typing, irritating Lucy, etc., I wanted to understand what was actually going on with all this activity — and this provided the necessary motivation for me to teach myself how to read. There wasn’t any other way for me to tell what was going on in these comic strips!

The fact that I learned to read in this manner led to some very funny moments, due to the fact that the number of words whose meaning I understood, generally from context, exceeded the number of words I knew how to pronounce — and, no doubt, still does. Once, in elementary school, I was laughed at by an entire class, after saying something about the “Eeffel Tower” (yes, that’s how I pronounced it). I also remember pronouncing the “b” in “doubt,” much to the amusement of my parents. Even in graduate school, I made a history professor groan in agony when I made a reference to the Weimar Republic — and pronounced the “W” as it is pronounced in English, rather than German.

#2: Mr. Spock

Spock

A scientist aboard a starship, exploring the galaxy, who uses logic to try to understand two things:  the nature of the universe (much of which he understood), and the behavior of illogical humans (something which confuses me to this day, just as it often confounded him). The first person I remember seeing on television had pointed ears, and there were several of them in that episode, “Amok Time.” In other episodes, of course, few Vulcans other than Mr. Spock appeared, and I always found him, to use one of his favorite words, “fascinating.” He influenced me in several ways, and still does, to this day. I am grateful to the creators of this character for inspiring my passion for science, ability to use logic, appreciation of diversity, and strong desire to maintain control of my emotions.

#3: Matt Murdock / Daredevil

daredevil

I may not have red hair, but I share many other characteristics with Daredevil — and I mean the character from comic books, not that disappointing B-movie (which deserves no further mention). Other than amplified senses — which I experience (unpleasantly) when I get migraines — Daredevil has no superpowers, yet he faces, and does battle with, super-powered villains, and usually wins. He is also a study in contradictions: a lapsed Catholic, who spends a lot of time dressed in a devil costume; a lawyer, with a second “career” as a costumed vigilante; and a blind man, who nonetheless perceives the world around him more clearly than anyone else. Matt Murdock has inspired me to respect the concept of justice, has influenced me to study what laws I need to understand, and, most importantly, has shown me, by example, how to face down those who would do harm to those I care about — and do it, as Daredevil does, without fear. I have also developed my “never give up” attitude, toward my adversaries (bullies, mostly), with inspiration from this character.

Matt Murdock and I have also had very rocky histories when it comes to romantic relationships. I have (finally) found happiness in this aspect of life, and am writing this next to my beloved, sleeping wife. Unfortunately, the writers of Daredevil, while they will let Matt Murdock enjoy temporary happiness in relationships with women, will never allow him to keep it.

#4: Data

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Data is amazing to me:  a sentient android, and an artificial person. He actually had to go on trial to assert his rights to personhood, and, with the aid of Captain Picard, won the case. He has a lightning-speed calculator, built right in to his positronic brain, which far exceeds the abilities of my own, not-too-shabby mental calculator. I have long had the ambition to gain the ability to reprogram my own brain’s “software,” and have written, on this blog, about how I finally gained that ability, after working on developing it for roughly thirty years. Data, of course, had this ability from the moment he was activated, but, unlike me, he does not have to sleep for it to work.

Despite his claim to experience no emotions, Data often expressed a feeling of being perpetually alone, for there was no one else like him anywhere — until he met his brother, another android, who turned out to be malicious. That feeling of being unlike everyone else is quite familiar to me.

Both Data, and Mr. Spock, display many characteristics of Asperger’s Syndrome, and my study of these two characters helped me figure out that I am, myself, an “Aspie” — our nickname for ourselves.

#5: Calvin

Calvin_by_Watterson

When I am playing (and, yes, I play a lot, especially with mathematics), and someone asks me why I, an adult, am playing, I have a standard reply: “Because I’m six.” This is a reference to Calvin, who was six years old during the entire ten-year run of Calvin and Hobbes, the best comic strip ever created. I read it from the first day it appeared in newspapers, and have the boxed set of the complete collection of these comic strips only a meter away, as I write this. Calvin is a six-year old prodigy, as one can tell from his expansive vocabulary, but is prone to making social errors, due to a lack of understanding of social conventions — and both of these things mirror my own life. (I grew up, literally, in science laboratories, unsupervised for hours at a time, designing and conducting my own experiments, and that sort of thing simply doesn’t happen without having profound effects on a child’s development — but, then again, why would I want to be normal?) Calvin, like myself, found elementary school boring in the extreme, and so he slipped, frequently, into his own inner life of fantasy. The fact that, being socially isolated (no siblings, and no friends, other than his stuffed tiger), he is usually alone, never stopped Calvin from having fun. Just like Calvin, I can have unlimited fun, in solitude — because I choose to be this way. Some adults lose the child within them, but, thanks to Calvin’s inspiration, that will never happen to me. I’m actually 46 years old now — so I’m pretty sure that, if I was ever going to lose the ability to have fun, it would have happened already.

To those brilliant people who invented these five characters: thank you.