Language, Cognition, and the Theory of Smoothie

I came across a post entitled Intentional Action and Asperger Syndrome (via Psychology Today) a few months ago. Psychology Today seems to deal extensively in "fluff", and this article didn't exactly do much to negate that impression in my mind, but it nonetheless sent me down a line of thought I figured was worth relating here.

Anyway, the article begins thusly:

How do we think about the intentional nature of actions? And how do people with an impaired mindreading capacity think about it?

Consider the following probes:

The Free-Cup Case

Joe was feeling quite dehydrated, so he stopped by the local smoothie shop to buy the largest sized drink available. Before ordering, the cashier told him that if he bought a Mega-Sized Smoothie he would get it in a special commemorative cup. Joe replied, ‘I don't care about a commemorative cup, I just want the biggest smoothie you have.' Sure enough, Joe received the Mega-Sized Smoothie in a commemorative cup. Did Joe intentionally obtain the commemorative cup?

The Extra-Dollar Case

Joe was feeling quite dehydrated, so he stopped by the local smoothie shop to buy the largest sized drink available. Before ordering, the cashier told him that the Mega-Sized Smoothies were now one dollar more than they used to be. Joe replied, ‘I don't care if I have to pay one dollar more, I just want the biggest smoothie you have.' Sure enough, Joe received the Mega-Sized Smoothie and paid one dollar more for it. Did Joe intentionally pay one dollar more?

Curious, I mentally recorded my responses to both scenarios before checking to see what a given response set actually supposedly meant.

(Try it yourself if you like - scroll down when you've decided on your responses)










After presenting the scenarios, the article continues:

You surely think that paying an extra dollar was intentional, while getting the commemorative cup was not. So do most people (Machery, 2008).

Now that surprised me. Not only because of the presumption of what the reader "surely" thinks, but because, well, I didn't actually think paying the dollar was intentional, while getting the cup was not.

As I read the descriptions of both scenarios, it seemed clear to me that Joe's intention in either case was to acquire the largest available smoothie.

Hence, I answered "No" both to the question of whether he intentionally obtained the commemerative cup, and to the question of whether he intentionally paid an extra dollar.

And...apparently, according to the authors, this is actually the predicted "autistic" response:

But Tiziana Zalla and I have found that if you had Asperger Syndrome, a mild form of autism, your judgments would be very different: You would judge that paying an extra-dollar was not intentional, just like getting the commemorative cup (Zalla and Machery ms).

Leaving aside diagnostic category nitpicking for the moment, and noting that I don't think a person's responses to the smoothie scenarios are definitively diagnostic of anything, the above quoted statement does apply in my case, and apparently applied for a significant percentage of autistic study participants.

That said, I am really having a hard time seeing how "mindreading" has anything to do with how a person processes the scenario. I strongly suspect that this is more a matter of how a person processes language. It makes sense that in a language-based task, you're going to get trends in how autistic and nonautistic people respond, but very rarely do I see this being examined -- it's a lot more common to see people hypothesizing about "Theory of Mind deficits" and whatnot in response to findings such as this.

When I read the scenarios, I mapped them both something like this:

- Joe wants A.
- In order to get A, Joe must accept B.
- Joe really wants A, so he accepts B.

As far as I'm concerned, it doesn't matter what "B" is -- in either case, it's a condition Joe must accept in order to get the thing he wants. Hence, while Joe is going to end up with B (whether it be a fancy cup or a wallet one dollar lighter), it cannot be said that he went to the smoothie counter intending to get a fancy cup or pay an extra dollar. He went there to get the biggest smoothie they had, and that's what he got.

Now, if you asked instead, "Was Joe responsible for the act of acquiring the commemorative cup or spending the extra dollar?", I would say "Yes" -- for both cases.

While (as I stated above), I don't see Joe as having intended to accept the extra condition, it was still his "fault" that he ended up with the special cup / paid an extra dollar.

He could have, after all, decided the cup was really ugly to the point where he chose a different drink entirely in order to avoid it. He could have decided he didn't want to pay an extra dollar after all, and compromised with a smaller smoothie (or again, a different drink).

So in both cases, he was responsible for what he actually ended up with, as he knew the parameters of the situation going in, and chose accordingly. But that does not mean, by my assessment, that he intended to acquire the cup or spend the dollar; those were just "side effects".

This is where I think the language stuff is probably coming into play. I am guessing that many people are probably equating "Joe intentionally acquired B" with "Joe was responsible for acquiring B", whereas I make a distinction between those two assertions. Not a moral distinction, mind you, but a linguistic/conceptual one. But (at least based on many of the comments attached to the article), it seems that if someone doesn't make such a distinction, they may in turn judge "passive" actions (Joe accepts the commemorative cup) as distinct from "active" actions (Joe hands over an extra dollar).

And...none of this seems to have any bearing whatsoever on whether someone is "seeing things from Joe's point of view". For one thing, we don't know hardly anything about Joe, except for the fact that he wants a large smoothie, and wants it badly. For another thing, he's a fictional character in a story problem, not a three-dimensional human being or animal (and, yes, contrary to stereotypes, I do like fiction and can relate to some fictional characters -- but they have to be fleshed out somewhat better than Joe).

So, again, there's definitely some language weirdness going on in the presumptions about this problem. The only thing I see as passingly relevant to "theory of mind" seems to be the inherent presumption that people will, in the absence of knowing much of anything about Joe aside from his smoothie hankering, project their own default mental maps onto him and determine his intentions on that basis.

I was surprised to learn, for instance, that some people who read the problem saw the receipt of the commemorative cup as a "bonus" of some kind, and that this figured into there intentionality assessment. Personally when I saw the phrase "commemorative cup" I pictured some annoying gaudy thing I probably wouldn't want, and so if I were going to project anything onto Joe, it would be my own irritation with florid promotional items. But I didn't do that, because, well, I'm not Joe.

Additionally, the first time I read through the problem (before reading any interpretations or responses from other people) I had a distinct impression of Joe's "intentions" as being the intention he had when he entered the store to buy the large smoothie. The other variables that came up were simply irrelevant; the fact that there were now one or more conditions attached to the acquisition of the large smoothie didn't change the reason Joe had entered the store in the first place. So I guess I attached some kind of temporality to Joe's intentions, in addition to interpreting the language used in the problem the way I've described.

I'm very curious to know how other folks interpret scenarios like this. Again, I do NOT take this very seriously, least of all as a diagnostic instrument -- but I do think the discussions surrounding this sort of thing are quite illuminating when it comes to the assumptions that tend to get made about autistic cognition, language use, and human cognition in general.

EDIT: This post (which is actually linked at the bottom of the "Intentional Action and Asperger Syndrome" article) seems to concur with the assertion that language interpretation issues are probably a primary factor in how people respond to questions like those in the smoothie problem.

My Blogging Limits

My blogging limitations -- that is, the parameters I apply in order to decide what is suitable and appropriate for public writing -- are based on a few basic rules I've set for myself, and on some fuzzier guidelines I've learned through experience (both mine and others').

Different people are going to have different notions of what is and isn't okay to blog about, and I don't intend this to be a set of regulations I'm going to judge other people by, but since the subject came up recently elsewhere I figured I would add my take on things to the discussion in the form of a post.

So, here are my personal blogging guidelines, for whatever it's worth:

1.) Work

Any writing about work must be in fairly generic terms (e.g., "I am an electromagnetic engineer at an aerospace company", rather than, "I am an electromagnetic engineer in the [X] department of [company name]"), and of course I will not ever post any proprietary information about any work projects online.

Additionally I do not name any individual people I work with at any given time (it's okay to say "a manager" or "a co-worker", but not "my boss, Mary Smith" or "my co-worker, Fred Jones") or give out too many identifying details about people I work with.

This rule came about due to my happening upon a lot of news articles a few years back about people getting fired for blogging about their jobs; I figured that was something I wanted to avoid and could pretty easily avoid just by declaring a moratorium on specifics.

(I'm more liberal about writing about past jobs, but even then I usually avoid naming names unless there's already some public document associating me with a particular person at a company; e.g., there's stuff online from when I was an intern at NASA that mentions the names of my boss then and probably some co-workers, but that stuff was all posted as part of a project where everyone involved had agreed to participate.)

2.) Other People

Any writing about other people¹ must be:

(a) factually correct to the best of my knowledge and memory, and,

(b) in sufficiently generic terms so as not to permit easy identification of individuals, or

(c) based on material that is already public, or

(d) done with permission (unless about a sufficiently non-sensitive subject)

As for what counts as a "sensitive subject", I determine that based on experience and reading. E.g., at present it is my perception that most people would prefer not to have their family members or others who know them describing their flatulence levels, medication regimens, or Scooby Doo underwear online.

Furthermore I'm leery of speculating about people's motivations (without a whole lot of good evidence), or offering a tidy interpretation of a situation that is probably anything but tidy. I need a lot of evidence before I determine that someone doesn't merit the benefit of the doubt anymore.

On the other hand, I think it's fine to write about something someone has done and what the consequences of that action were (or may be in the future). This is not the same thing as questioning someone's intentions, and shouldn't be taken as a "personal attack".

3.) Self

As with writing about others, writing about self must first and foremost be factually correct to the best of my knowledge and memory. I have actually been known to do things like...root through old files (the paper kind) and photo albums, just to make sure I'm remembering what I think I am.

Secondarily, (and this is relatively new for me), I make somewhat of an effort to avoid egregious over-sharing. I was born totally unselfconscious and had to be taught repeatedly not to, say, walk around with my dress somewhere up near my head as a kid.

In junior high I got very defensive and suspicious for a while as a result of being bullied, but it was years and years after that (and I am talking "not until my 20s") that it occurred to me that I did not HAVE to tell people whatever they asked all the time, especially if I didn't know them very well. So I run a brain-algorithm now when blogging that urges me to think before I write.

I still write about plenty of things that I'm guessing some people would consider embarrassing, and I think it's important to do this in some cases as some of the things I can help shed light on are things that I don't think people ought to be stigmatized for in the first place -- but I feel like I at least have a right to privacy now, and I think that's a good thing.

---

1 - By "other people" I'm referring primarily to family members, others I've known offline growing up, and people I know online but have had a reasonable amount of private (e-mail, etc.) communication with.

I'm also referring secondarily to people I don't know at all but who I might read about in an article or book, but since the only way I'm generally going to learn anything about those people is via information that's already somehow public, the challenge there becomes less one of deciding what bears revealing, and more one of what bears repeating.

A Few Cool Quandaries

Lately I've been perseverating a bit on one of my longtime nerd-interests, cryonics. My first exposure to the idea of chilling and storing bodies for potential later revival happened, as is usually the case, via science fiction. I'd previously been interested in "time machine" sci-fi but "suspended animation" sci-fi had even more of an appeal for me as it entailed not only a sort of travel into the future, but all kinds of weird medical theory and instrumentation. Which was right up my alley, so to speak.

I'm not personally signed up for cryonics in the real world, but somewhere in the back of my mind I've sort of been planning on signing up since high school, or whenever it was I actually learned that real companies did that kind of thing. Recently the discussion came up in real-world terms, though, and I found myself wondering: would I really go through with signing up? Do I think others should sign up? What about my family and loved ones -- is this something I'd recommend to them? And if so, on what basis?

I definitely don't put much stock in it actually working. I suspect that any major medical breakthroughs having to do with arrested metabolism and low-temperature maintenance will probably come from ongoing developments in therapeutic hypothermia and related techniques already in "mainstream", if not widespread, use. But that doesn't mean I don't think it's neat.

However, I've recently found out just how "weird" and even "crackpottish" the idea of cryonics seems to Most People. I actually always saw it as one of the less weird things a person might conceivably find intriguing. But apparently that isn't the case.

I've thought hard about this realization and I've determined that I am not actually worried, in the slightest, about being seen as strange or wacky.

What I am worried about is actually being wackily detached from reality. I've always been determined to face the actual truth no matter how it might make me feel. So I've been trying to figure out if being intrigued by cryonics and considering it every bit as reasonable a choice as, say, having one's ashes shot into space or donating one's body to a medical lab means anything bad about my capacity to evaluate claims or accurately assess reality.

I definitely don't think that the first people suspended will likely be revivable, or that anyone who was dead for two days (give or take) prior to suspension likely has enough brain left to be future-salvageable, but based on my admittedly amateur level of biology-knowledge, it seems at least conceivable that someone suspended right at the point of clinical death, and suspended well, could have a chance of being revived similar to the chances of someone found at the bottom of an icy lake. Is there something I'm missing here science-wise?

Mind you I am not talking about "scanning" brains and "downloading" them into Shiny Robot Bodies -- that's way far off in speculative-land beyond what I think anyone alive today can reasonably do anything but fantasize about. But just...chilling a very-recently-clinically-deceased body, keeping it for a while, then waking it up someday? That just doesn't ping my weird-o-meter very strongly.

And...I guess I'm wondering whether it should. Again, I'm not worried about my "image" here, I'm worried about making sure I don't end up believing anything stupid just because it sounds really cool.

I plan on keeping on reading more about the biology of life, death, and everything in between, so perhaps I'll eventually come to a higher confidence level either way, but still, I'm curious about any particular (non-"futurist", preferably) resources people might want to recommend.

By the same token, I'm wondering if thinking cryonics is conceptually ethically okay (that is, I don't think it's unethical or immoral for a person to choose to sign up for cryonic suspension) means anything awful about my character. Again, this isn't about what I'm worried about being perceived as, but what I'm worried about actually possibly being. I don't want to be a "narcissist" or a pathologically selfish person -- but does being interested in cryonics make me one?

Acceptance and Perceiving The Real Person

I've read a lot of articles and discussions and comment threads on the subject of how to best help autistic spectrum kids and adults lead the best lives possible. Often in these discussions, I see controversy and miscommunication, especially when it comes to what it means to "accept" an autistic person, or to accept autism/disability/difference in a more general sense.

One common misconception, which I think is relevant here, is that "acceptance" means "doing nothing" or "leaving someone to rot", etc. When that isn't the case at all.

I'm considerably less scruffy these days than I was at the age of twelve. I'm glad of this. It definitely feels better from a sensory standpoint, for one thing.

But it didn't happen overnight. I didn't get yelled at by my teacher and suddenly, magically obtain proper grooming skills. It took many months of patient help from my parents, who were able to break what had seemed like a vague mass of arbitrary activities into specific, functional tasks that made sense before I eventually obtained more or less appropriate grooming skills. (I went through a period of hyper-obsessive grooming in eighth grade that entailed carrying a hairbrush around and brushing my hair every ten minutes or so, but over time I backed off on this and by high school I had established a reasonable enough routine.)

So, again, I'm glad things turned out the way they did in that regard. I like being and feeling fresh and neat. But I'm pretty darn sure my "good outcome" in that sense was largely due to the efforts of people like my dad, and my paternal grandmother, and a few other people who in their own various ways managed to see what sort of creature I was and deal with that on its own terms. In other words, regardless of what she thought, it was not due to my sixth grade teacher that I managed to "improve" in certain respects.

I remember after sixth grade at some point, possibly a few years later, I ran into that teacher again, and she made a comment like, "Well, I certainly helped straighten you out, didn't I?" And I remember just being really baffled by that.

While that confrontation with her did "shock" me into a greater level of self-awareness than I'd had previously, it also made me really hate myself for a while. Being told that I was lazy and contrary and self-important and rude (due to not only my poor self-care skills but my classroom performance, behavior, interests, and language patterns) while not having the insight or communication skills to argue -- well, let's just say it was pretty demoralizing.

I am certain the whole thing could have been approached in some other way, a way that didn't entail shaming and yelling. And furthermore, it could have been approached in a way that didn't pathologize practically everything about me. Particularly painful was hearing that my tendency to get really interested in certain subjects (during that period in my life it was Star Wars) was a sign of my being "too lazy to learn about anything else" -- that made me feel guilty for being interested in things.

Sometimes people do have issues that really need to be addressed, which may be related to their disability/difference. I definitely needed help learning appropriate self-care skills growing up, and even as an adult I've needed help with things like remembering to eat enough actual food and drink enough water to avoid dehydration. I don't dispute this, and I don't think that nothing should have been done.

It's just that...as I see it, being accepted as a person means that you have been acknowledged as real, and as actually being the sort of creature you are. It doesn't mean being seen as somehow "special" or "better" than other people, nor does it entail being seen as categorically "less than" other people.

It just means that, when someone looks at you, they aren't constantly comparing you to an abstraction, whether that abstraction happens to be an idealized or demonized ghost-version of you.

When a person can see another person realistically and clearly, they might certainly see areas where she needs help, but they aren't going to treat her like a circle that needs to be made square, or as raw materials to be thrown into a blender and reconstituted into a more convenient shape.

The Illusion of Inconsistency

In general I would say that I have a "good" life, meaning that I enjoy being alive and have been very fortunate in some respects. I can easily find things to delight in, and I am constantly seeking information about the incredible and endlessly complex world I live in.

However, this does not mean everything is easy for me all the time. In fact, a lot of things have tended to be extremely difficult. I've tried to deny difficulty at various points in the past, but invariably this has led to my experiencing a dramatic and unignorable "crash" or other crisis which has necessitated a major rearrangement of how I'm doing things.

My guess is that very, very few people (maybe three or four at most) have an accurate perception of what my life is actually like, and what was like for me growing up. These individuals seem, for some reason, capable of seeing me as a complete person, and hence don't see my "min-maxed" skill set as particularly bizarre or somehow suspect.

But among people who don't know me very well (which is to say, most people), there's a pretty consistent reaction of surprise if I do something to break whatever image it is they've formed of me. And...while some amount of confusion is understandable, given the human tendency toward applying heuristics to categorize people quickly, there's a point at which I think people are responsible for checking their misconceptions.

This means that if someone who seems a decent engineer discloses that they're autistic (or otherwise disabled) to you, you don't say something like, "Oh, come on, do you really want to think of yourself as disabled?" While this kind of reaction may be an attempt at complimenting the person, in essence the message it actually sends is, "I don't feel like updating my picture of who you are, no matter how you might be affected by that".

It also means that, if you find out that an autistic person has been in "gifted" programs, or accelerated classes in some areas, or something along those lines, you don't presume that this person can't possibly have any significant difficulties. Being autistic doesn't categorically preclude being in gifted programs any more than being blind or gay or female does, despite historically small numbers of all these groups being included in such programs.

Here's a picture of me in sixth grade, on a trip to New York City.



That year -- sixth grade -- was probably the worst of my entire elementary education. School had become sufficiently abstract such that I could no longer rely on my memory and pattern-matching skills so much; my grades were dropping, and I couldn't explain why, and I was terrified that I was "getting stupid". Meanwhile, the demands of being twelve were much greater than the demands of being ten and eleven had been, due to the usual physical stuff that happens around that age, and I was finding I simply couldn't keep up.

One consequence of this was that I went around pretty unkempt a lot of the time. My hair usually wasn't washed or brushed (because I was expected to be doing these things myself by that age, only I hadn't picked up those skills nor the capacity to plan to do them regularly or frequently enough). Other kids thought I was "gross". I didn't know what they were talking about. Eventually, though, the teacher pulled me out into the hall and demanded that I "grow up and learn to change my clothes and wash". I was shocked by this. I hadn't even realized there was anything untoward about my appearance until that point.

I'd liked the above picture up until that day, the day my teacher yelled and my parents got called and I got lectured for academic and "behavior issue" stuff in addition to for my abysmal self-care skills. After that day, though, I hated it. I suddenly, having been jerked and jolted into raw self-awareness via humiliation, saw that picture and saw not a kid actually having fun looking at stuff on an interesting field trip, but a kid with giant ugly glasses and hair hanging down in dirty, matted sections. It was preposterous that that could be me. And yet it was. And I had no way to explain why or how I was "like that", or why I hadn't noticed so much wrong, or why I couldn't seem to keep up with most of what people my age were "supposed" to be keeping up with.

I was in the gifted class that year, yes. I also went to the Resource Room (where kids with LDs and other issues went for "extra help"), colloquially known to my classmates as the "retard room". I wrote seventeen-page science fiction stories when the assignment only called for a minimum of two pages. My parents started helping me wash my hair in the sink, and there was talk about soap and how many times I could wear an outfit in a given week.

Below is a picture I took in New York City, while on the same trip as in the previous photo.



My favorite part of that whole trip was looking at all the neat lines and angles of the buildings, especially the shiny ones. This scene struck me as particularly interesting because it showed a more ornate, older-style building reflected in the surface of a shiny modern skyscraper. I took the above picture with my mother's camera, which I'd borrowed briefly.

It's a decent picture, as far as such things go. I know this now, as an adult, because I've seen a lot more photography and critiques thereof. I've chosen to display it publicly because I like it, but I've also chosen to display it here, alongside a photo I used to want to burn, because I've realize how strong the drive can be to only present or even acknowledge one side of a person.

When I was growing up it often felt like I was being told that half of me was "the real person", but the other half wasn't. That it made logical sense for me to be either a "smart kid" or a kid who had some trouble learning self-care skills, but not both. Or sometimes even that it made sense for me to be a "retard" but not someone who might be able to win the spelling bee or draw well.

It was as if people were enraged more by what they saw as "inconsistency" than by the actual thing, whatever it was, that happened to be bothering them about me. I was supposed to be one thing, but failed to be wholly that thing, or wholly any other thing, and this wasn't allowed. Either I was "ruining" the worthwhile person I "could" be, or I was, in my non-worthwhileness, encroaching on the territory reserved only for beautiful popular tidy kids. Kids who looked and acted like me weren't supposed to win anything or be good at anything, and kids who ever won or achieved something clever didn't have the problems I had.

But regardless of what was "supposed" to be, I was what I was, and that was a kid whose existence did not in any way, shape, or form contradict itself. Nor does the existence of any other person, autistic or not, whose skills happen to fall along atypical patterns, contradict itself. Ability and disability and commonality and difference are all equally real, and can coexist in the same person as they coexist in humanity at large. And the sooner more people realize and internalize this, the more inclusive and civil our society can become.

Not (Just) For Want Of Technology

Lifesaving Medicine, Power, and Human Vulnerability

I.

Not many people, save for members of certain fundamentalist sects, are philosophically opposed to medicine.

That is, the vast majority of humans consider it perfectly reasonable to provide lifesaving, health-restoring, and analgesic treatments to individuals who are sick, injured, and/or at risk of dying.

Furthermore, as we get better and better at identifying and treating pathologies which tend to lead to pain, loss of vital bodily functions, and death, effective health-restoring and lifesaving treatments come to be perceived as rights. Nowadays, not only do those of us who live in wealthy, industrialized societies have access to devices like defibrillators, we also exist in a cultural climate where it is often expected that such a device (and/or a technique like CPR) will be used in the event someone's heart stops.

In other words, failure to attempt to re-start a stopped heart (if the means exists to do so) would likely be frowned upon by ethically-conscious individuals, even though there was certainly a time when doing so was impossible. The same goes for other medical devices and practices, and the ailments they apply to -- e.g., vaccinations and antibiotics are now given as a matter of course (where they are available), which has resulted in many, many lives saved over the past few generations.

Nevertheless, there is much work needed to expand the benefits of these and other technologies to persons in the developing world and to less wealthy and privileged people in the developed world. Trends in technological development and ethical awareness which have led to better conditions for some cannot be presumed to be "inevitably" resulting in better conditions for all; there are a lot of stumbling blocks in the way between here and there.

As an engineer and longtime science nerd/gadget geek, I've long tended to see problems first in terms of what machines and devices and inventions might potentially solve them. I am a stickler for empirical data and concrete information, and a lot of "political" discourse goes straight over my head.

But I've been around long enough now, and witnessed enough communication (the Internet has helped a lot here as I'm a far better reader than I am a listener) to understand that the stuff we normally think of as "technology" doesn't occur in some vacuum-space outside other human activities and culture.

Yes, things like matter and energy and trees and water molecules and wind currents exist regardless of what humans happen to think of them, and have particular effects regardless of what any culture happens to believe about them. But when it comes to humans taking these things and making other things out of them, we generally have some culturally-mediated end in mind.

And even if someone is just studying and trying to build something out of pure joy in research and discovery, it is likely that the outcome(s) of that effort will probably be applied instrumentally by someone else -- and in some cases instrumentally not applied.

II.

Referring back to the cardiac arrest example at the beginning of this article: for the purpose of this discussion, presume that the nonduressed position (were s/he in a state to express it) of the person whose heart has stopped would be that s/he wants very much to live.

What would it take to permit this person's wish to live to be fulfilled?

Yes, it would probably take some sort of mechanism and the know-how to apply it; it would take the work of scientists and engineers and EMTs and doctors.

But it would also take the people around that person -- who, while in cardiac arrest, is extremely vulnerable and in possession of little power -- to determine that s/he should live, that the effort to save him/her is in fact worthwhile. And those sorts of determinations are made not based on what shiny gadgets are available, but on impressions and biases and other fuzzy factors that run very deeply.

That is, not everyone sees everyone as "worthy" of having his or her life saved, and that different people are held to different standards as far as what positions are considered "selfish" for them to hold.

Late in 2008, Barry Baker, a 59-year-old British man, started experiencing chest pains and called an ambulance. Paramedics were summarily dispatched, but rather than immediately initiating CPR (or any other treatment) upon arriving at Baker's home, they apparently (according to the operator listening in via Baker's still-connected phone) stood around discussing whether or not Baker was "worth saving", making disparaging comments about the cluttered state of his house. Beyond that, the paramedics were heard actually deciding to leave Baker lying there and report that he'd been dead on arrival.

Predictably, Baker did die, but he might very well have been saved if the paramedics had actually done their jobs.

Deborah Orr, columnist for The Independent commented on this epic ethical failure in an article entitled The shocking price paid by those not perfect enough to be treated She writes (emphasis mine):

The two [paramedics] have been suspended, arrested on suspicion of wilfully neglecting to perform a duty in public office, and bailed. An inquest into Baker's death has been adjourned, while investigations continue. Can these allegations really have any foundation in fact? Can people in Britain today really end up dead because medically trained professionals reckon that they are not quite perfect enough to be treated?

The mental health charity Mencap claims that actually this happens quite often. In a recent report entitled Death By Indifference, the organisation highlighted six cases in which people with disabilities were denied life-saving treatment, or just neglected because they were, like Baker, unable to speak for themselves.

It is good that these paramedics have been widely condemned for their failure to act. Most people commenting on the news stories following Barry Baker's death seemed thoroughly horrified by what happened. But, as the quote above from the Independent points out, this sort of negligence is not exactly unheard of.

Whenever you have people in a position to determine whether other, more vulnerable people live or die, you have a situation where flippant value judgments (such as deeming someone unworthy for being disabled, overweight, having a messy home, etc.) can have lethal consequences.

Furthermore, there are a number of (generally) socially acceptable attitudes contributing to such value judgments being made. The idea that older and/or disabled individuals "use up more than their share of resources" is one of these attitudes. The idea that you can tell what someone's potential for appreciating life is by looking at them or assessing their apparent ability levels is another. The idea that people who are fat, or who have trouble keeping house, are "lazy" and "decadent" is yet another.

No single one of these attitudes by itself, simply sitting up in someone's head, is likely to do much. But the proliferation of these attitudes and their underappreciated role in amplifying the pernicious effects of power imbalance is extremely dangerous indeed. People really need to work on looking carefully at why they are making the value judgments they're making, and ask themselves what the possible consequences might be of judging someone at the worst possible moment.

III.

A lot of my reading and writing over the past few years has focused on what look to be promising emerging and theoretical advances in medicine (particularly longevity medicine), and I remain fascinated by and enthusiastic about such advances.

The fact that we've figured out ways to make parts of our environment instrumental in our own functioning -- in manifestations ranging from wooden legs to wheelchairs to heart-lung machines to hypertension drugs -- is utterly fascinating.

Moreover, our very nature seems to be one which permits (at least on occasion) stepping outside the status quo and identifying areas of how we live that could stand to be improved, and then using our imaginations (along with plenty of hard work) to make those improvements happen.

But: as with all good and fascinating things, there are traps and pitfalls to watch out for.

You see, a lot of the time right now, when people suffer and die, it's not due to a failure of "technology".

Yes, we need more good, solid research and better therapies for fatal health conditions.

But we also need to readjust our cultural barometers as far as what a "good life" -- a life worth living -- could consist of.

I have long seen disability rights and longevity/healthcare advocacy as things that ought to go hand in hand, and have consequently been perplexed at why some supposed advocates of "using technology to better the human condition" insist on dismissing organizations like Not Dead Yet as "disability extremists".

I don't understand how someone can claim on the one hand that "involuntary death" is awful, but then fail to consider how calling people "burdens" (because of the cost of their care, etc.) sets up an environment where:

(a) such people might feel obligated to die, and
(b) people who are more privileged/less disabled/etc. might begin to feel justified in promoting the death of more vulnerable persons, and in speaking for such persons regarding the quality and worth of their lives.

I don't understand why "being kept alive artificially" is ever considered a bad thing, or why the "artificially" descriptor is usually tacked on only when the person in question is very old or disabled.

Yes, some people have conditions that will result in their death if they are not treated and/or provided with access to certain technologies and types of care.

Yes, some forms of care are expensive and logistically difficult.

But I don't believe for a minute that we have, as a species, exhausted our creative potential in the realm of figuring out how to solve these problems.

The assumption that it's all a zero-sum game is unjustified*, and the attitudes that tend to go along with this assumption ought to be considered ethically unacceptable by any civilization fit to bear that name.

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* I know full well that resources are not infinite. I just think it's dangerous to look at situations where someone has died due to a failure of logistics and conclude that this means other people in similar situations perhaps "should" die as well.

It's the same for philosophies like "trickle-down economics" -- yes, it may work out that rich people get to benefit from new advances before poorer people do, but this ought not to be the basis for an ideology so much as an indication that humans are really bad at distributing stuff. Not to say we can't get better, but it doesn't help us get better when we persist in deriving "is" from "ought" so readily.

A Bit Of Electronic Instrument Geekery: Fun With MIDI Controllers

One thing I've been rather enjoying as of late (and which I've been doing both for fun and because I figure it's good to keep one's neurons forming new pathways) is playing around with a MIDI controller* keyboard and sequencer software.

My partner Matt and I got the keyboard about a month ago, as both of us were interested in learning to play some sort of piano-like instrument. Both of us have some experience musically, but not extensive amounts of it; he played saxophone in high school and I played guitar informally (but often) as a teenager. I also played the piano a bit growing up (and had a screaming-red electronic keyboard when I was nine on which I incessantly played a one-finger version of the Star Wars theme), but not very seriously and never to the point of being able to read music beyond identifying Middle C.

In any case, when we decided to get the keyboard, we had a few decisions to make and not a lot of knowledge regarding the current state of musical technology to base them on. Both obtaining and setting up the keyboard turned out to be quite a learning experience, so I figured I would write about that experience here for the sake of anyone who might be curious about embarking on a similar quest.

Hardware

Here is a picture of the setup I am using:



The setup consists of the following items:

1. The MIDI controller keyboard (this one is an Axiom 49), which plugs into the computer's USB jack.

2. A computer (here, a Dell Inspiron Mini 9 laptop, running Ubuntu Linux)

3. Speakers (just regular powered computer speakers, plugged into the laptop's headphone jack)

These items are necessary because with a MIDI controller keyboard, you do not get any sound out of it without attaching it to a computer and running the proper software**. Essentially the keyboard should be thought of as an input peripheral, similar to a mouse or standard keyboard.

When I learned this, I was initially somewhat confused, but that was because I didn't really understand the nature and purpose of the controller yet -- I was thinking initially in terms of a standalone piano-like instrument, and couldn't figure out why anyone would want a keyboard you couldn't just turn on and start playing.

When I learned a bit more, though, I realized that there was actually a lot of power in a MIDI controller setup and am now really glad I went for that option.

In any case, MIDI controllers can be used for live music performance so long as you have the proper software and a powerful enough computer to handle the audio processing in realtime. They and their accompanying software are just more geared toward composition and mixing than to being played the way you'd play a regular acoustic piano, and their features reflect this.

Hooked up to a computer, you can use a MIDI controller to enter in and record the notes for one part of a song, save the result, do this multiple times, and then mix and overlay the tracks on top of one another.

Technically, you don't even need a piano-like keyboard to do composition using MIDI software -- programs have been available for years that allow you to just plunk down the musical score (using an interface that resembles sheet music) and have the computer play it back or save it or mix it with other tracks.

However, that sort of interface is really only useful for people who are extremely well-practiced at reading and writing music and who aren't interested in realtime performance. For the rest of us, there are controller keyboards available with varying numbers of keys, ranging from about 25 (for those who want maximum space efficiency and don't mind hitting a transpose button to change octaves) to a fullsize 88 key configuration.

What I wanted, upon learning what one could do with MIDI, was something that sat someplace about halfway between "best for composition" and "best for playing", and I found it in the combination of a 49-key controller unit and the computer system I connected it to. 49 keys allows for two-handed playing in realtime while not being so huge I'd have trouble storing or using it in my teeny apartment.

Furthermore, as small as computers are getting these days (I love my little Inspiron!), I figured it wouldn't be that much bigger of a deal to have a setup that included a computer than one that didn't. This has proven true as you can see from the setup photo above -- the entire hardware suite fits nicely on a coffee table, and all the parts stow away easily and are quick to set up when you want to use them.

Software

As far as software goes --initially I had the keyboard set up with a different laptop running Windows and the demo software that came with the keyboard (something called Ableton).

That setup, sort of worked, but I found the Ableton software to be ridiculously slow and cumbersome. Furthermore, all the synthesizer sounds included had bizarre, non-descriptive names like "Uncle DJ's Blue Elephant Breakfast" (not a real example but I swear that's about how weird the names were) and it was just a major pain to have to try each and every one before getting anything that sounded remotely like the instrument you were actually looking for.

Granted, some of the annoyingness of that software could be related to the fact that it was only a demo version I was using, but the interface just wasn't very nice to use -- it seemed to be overcomplicating things that could have been done a lot more simply. To its credit, some of the sounds available in that software were pretty neat, and eventually I might try using it if I decide to do something really wild like create soundtracks for short surreal sci-fi films recorded on my digital camera (maybe in an Alternate Universe of Copious Free Time...), but overall I just didn't like it very much. YMMV.

Matt disliked the Ableton software even more than I did, and because of this, he was intensely motivated to find some way to run the keyboard interface using Linux. He did some searching and managed to find a software combination that was not only totally free, but which so far seems to be working wonderfully (and with a nice, clean interface on top!).

The software set we are currently using runs under Ubuntu, and consists of:

1. JACK Audio Connection Kit (which permits audio to be piped between different processes and applications with minimal latency; important when you're dealing with realtime music)

2. Fluidsynth software synthesizer, with Qsynth serving as a front end (the synthesizer receives the inputs from the peripheral device and renders them to audio)

JACK and Qsynth on the laptop screen

3. Rosegarden sequencing / composition / editing suite (main interface for playing and composing music)

Rosegarden on the laptop

JACK and Qsynth don't need to be messed with much once you've launched them -- they both have various controls associated with them, which may affect sound in interesting and potentially useful ways, but I've so far just left them in their default states and let them sit in the background.

Rosegarden is where you actually select instrument parameters (i.e., what "voice" you want the music to have, whether you want it to sound like a piano or a violin or an electric guitar or an ocean wave), and you'd do your track mixing and composing. So when using the instrument, whenever you're doing things in software, you'll probably be doing them mainly via the Rosegarden interface.

Making the Music Happen

With the combination of hardware and software above, I now follow these steps to make the music happen:

1. Plug speakers into wall power and into the computer's headphone jack
2. Plug MIDI controller into computer using USB cable (note that the keyboard is powered via USB)
3. Turn on the computer
4. Launch JACK
5. Launch QSynth
6. Launch Rosegarden
7. Turn on keyboard
8. Select Instrument Parameter (in Rosegarden)
9. Play!

I have not yet actually tried any composition or mixing, but I really hope to do some of this in the future as I learn more about how to play and use the software. As I mentioned at the beginning of this article, I never really learned to read music -- it just always seemed like such an annoying abstraction set between the sounds and my ability to make them. Hence, I'm very much a "play by ear" sort of person. I don't know how much progress I'll make at learning to read music, but I'm intrigued by the fact that with the setup I have now, I can press a key and have the computer show me what note it is, rather than the other way around. Who knows, perhaps that will help me learn what notes go with what sounds.

The video below is my (very, very) amateurish rendition of the level 3 theme from Castlevania.



As you will see (and hear) if you watch it, my rhythm is a bit off, and I pause in a few places, and there are a number of screwups, but overall I'm excited at even having been able to get as far as I have in figuring out the song. I know full well that my playing is still extremely amateurish -- I certainly did not post this with any illusions about being awesome or particularly well-practiced -- but considering I figured out the notes basically by ear and mostly from memory, I don't think I'm doing too horribly.

Furthermore this video demonstrates the fact that despite the synthesizer being based in a very small "netbook"-type computer, there's really no perceptible latency or crackling or clipping.

This is probably the thing that's impressed me the most about the whole setup -- the fact that I've got this full-featured musical suite in my living room now running entirely on cheap, readily-available hardware (which I figure was not designed with this kind of thing in mind!) and free software.

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* MIDI stands for "Musical Instrument Digital Interface", and is a protocol specifically for transmitting musical data within an electronic system.

** There are some standalone playable keyboards out there that have MIDI interfaces (even my old red circa-1989 keyboard apparently had this capability, though I never used it), but they tend to be bulkier and more expensive than the plain controllers, and may actually limit what you can do in the long run without even more expensive upgrades or replacements.

Getting a Job - On Internships and Finding Out What You're Good At

This is the second of a series of posts I'm going to be doing here on autism and employment.

Internships* aren't the only way to get a job of course, but they're a way I'm personally familiar with so I am going to write about them a bit. Internships are a great opportunity for all students looking to gain experience in the workplace, but for students on the autistic spectrum, they can be utterly invaluable.

For one thing, the "interview" portion, if there is one at all, tends to be shorter and less grueling than an interview for a regular position.

For another thing, internships can give us a chance to familiarize ourselves with our competencies. Frequently, autistic persons absorb a lot of negative messages about our abilities and potential due to how we're so often told that "in order to do X, you need to be good at Y" (where "X" might be something like "engineering work", and "Y" might be something like "making good eye contact when people talk to you" or "multitasking").

The fact of the matter is that a lot of abilities aren't as connected as many people think, and it's important not to sell yourself short and presume something is impossible for you because you aren't very skilled at what "conventional wisdom" says you should be (but which may not actually have anything to do with the core competencies necessary to do the job you want).

Having an internship can give you the opportunity to experiment with different working styles and productivity tools and workarounds, so that you can get a more accurate look at what you can actually do .

Furthermore, in an internship situation, you are not expected to have prior experience in a similar job. A lot of people just starting their job search (and this most definitely applies to everyone, not just autistic people!) will get the sense that all the jobs in their field seem to require experience -- which puts those seekers in a bit of a catch-22.

Since an internship lets you gain experience without the stipulation of requiring prior experience, finding one can enable a person to break out of that "need experience to get hired, but don't have any because nobody will hire me" cycle. Again, while this is good for everyone, it is potentially even more helpful to people in demographics that don't have a high employment rate.

When you know what you can do as a result of having gained actual concrete experience doing that thing, you will have something a lot more tangible to refer to and point at when future potential employers want to know what you might bring to the company.

As for how a person gets the kind of internships I got, there are three main ways I know of:

1.) Filling out applications and/or talking to company representatives at job fairs (many colleges have job fairs on site)

2.) Responding to a flyer posted on a campus or other bulletin board from a company seeking interns

3.) Inquiring with (or being approached by) family members, family friends, or acquaintances regarding possible internships at the companies they work for.

I had two internships in college, one at NASA, and one at the aerospace company I got hired at after graduation and still work for.

My NASA internship happened because my dad nagged me to attend a job fair at a community college I didn't even attend at the time (but which I enrolled in upon applying for the internship).

I hadn't assumed it possible for me to get a job somewhere like NASA (as I figured they'd want someone with a lot more experience, or at least a lot more classes on their transcript than I had at that point), but it turned out that the school district had an educational partnership with NASA. This basically meant that I'd be on the payroll of the school district while simultaneously earning work study credits and getting to be on-site at NASA Ames Research Center learning, attending seminars, and assisting NASA employees with projects.

Still, though, I only barely managed to fill out the application and turn it in on time to be considered for a position. I think I still have a copy of that application somewhere -- I hadn't known how to answer some of the questions, so in typical Anne fashion, I just wrote...rather a lot, and I did it in very tiny writing so as to fit it all on one page.

In any case, they did hire me, and as far as I can tell they did so because of my interests and enthusiasm. Having been fascinated by space and space travel from a young age, the very idea of working at NASA had me completely starry-eyed, and I think maybe they picked up on that.

In retrospect I find it very interesting and somewhat amusing that the same kind of enthusiasm for a subject that got me in trouble in elementary school (such as in sixth grade when I was banned from doing any projects pertaining to Star Wars) ended up actually helping me get a job in college.

So, to autistic students seeking internships -- if you can find a local opportunity along the lines of one of your special interests, you may want to seriously think about applying. Being really intensely focused on something and liking it a lot can be a good thing.

The internship that led to my present job happened because a family member of mine happened to work at a company that was looking for summer engineering interns. This family member informed me of the opportunity and told the company I was interested, and upon review of my transcript, the company hired me for that summer.

That experience was quite different from my experience at NASA, in several respects. Because this was a private company and not a public research or educational entity, there was a bit more of an emphasis on "getting things done", and the pace was somewhat faster. It also paid almost twice as much as the district had paid me during my NASA internship, the hours were longer and more regular, I sat in my own cubicle rather than in an office with my boss, and there were more meetings.

During this second internship, I provided support to design engineers: lots of schematic capture, part placement and area studies (using board layout software), etc. This enabled me to get experience using the types of tools I'd likely be using as an electrical engineer later on, and also exposed me to the various types of circuits used in "real-life" devices. I remember being amazed by how large and complex the circuits were as compared to the little stripped-down models common in the example problems we had to solve in school.

Both my internships enabled me to get a much better sense of my abilities than just going to school would have. They also directly contributed to my getting a job after graduation -- as noted earlier, the second company I interned for hired me when I finished school (and, I might add, without putting me through an interview). I've been employed ever since.

Of course it hasn't all been perfect and easy -- in fact, it's been tremendously difficult, and I've been overwhelmed and sensory-overloaded a lot over the past seven years. I have a lot of trouble keeping up in realtime with everything that goes on, I still get tripped up easily by questions like "How are you?", and by the end of most days I feel like I'm escaping from the zoo! But nonetheless, I've learned a lot, and I've carved out a bit of a niche in electromagnetics, and I now have a reasonable amount of concrete experience as an engineer -- things that I know will continue to be useful into the indefinite future.

The bottom line is that it's never too early to start thinking outside the classroom and about the world beyond, and what you might want to be doing in it, based on your interests, whatever they might happen to be.

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*When I say "internship" I don't even necessarily mean a formal internship, or one that you have to be in college to get. I'm writing mostly about the kind of internship I have personal experience with, but pre-graduation experience is really the key, regardless of the form it takes.

It could be that you end up doing something more like an apprenticeship, where you start learning and practicing a skill and developing job-related competencies as early as high school.

It could be that you get a job through your school, or through some services you might be receiving (though vocational rehabilitation has a bit of a ways to go). Etc.

To me, all the above count in ways (and might have similar effects to) the kind of internship I'm most familiar with.

Exploring Employment for Autistic Spectrum Adults - Introduction

This is the first of a series of posts I'm going to be doing here on autism and employment.

According to one study (Barnard et. al., 2001), only about 6% of all people on the autistic spectrum hold paid full-time jobs. My guess is that the actual number may be slightly higher when you figure in undiagnosed or undisclosed autistic persons, but even with that consideration, it is clear that atypical neurology and the modern workplace don't exactly have a consistently harmonious relationship.

I am one of those who is employed. I've had a full time job for about seven years now. I guess that puts me in the 6% figure, meaning that I'm presently one of the privileged few (relatively speaking). But it definitely hasn't been easy, and it does a disservice to autistic/disabled people everywhere to presume that if we have a job it's only because we must be "high functioning enough" to have one, when in fact our employment (or lack thereof) hinges on a complex set of factors just as it does for anyone else.

Furthermore I am not assuming here that every autistic person can work in a "regular" job -- the way things are set up now, a lot of people (of varying neurologies) can't work, and it isn't because they are "lazy" or totally lacking in skills. I don't think it's possible to be alive and conscious and have zero skills, for one thing, and for another, there are numerous people in existence right now who are contributing plenty to their communities in ways that do not fall into the category of regular paid work.

In any case, I know it is impossible to approach the subject of employment for a particular group of people without running up against deep, abiding questions about the very nature of employment, what counts as a "real job", what it means to have a skill, what it means to be "productive", etc. But since I am trying to write something reasonably practical (and readable) here, I am not going to delve too much into the "philosophy of work", nor am I going to try and deconstruct economics from the ground up.

Rather, I am going to try and share some of what I've learned in the process of navigating the world of work, in the hopes that maybe someone will find it useful.

Autistic job-seekers and workers very likely face certain particular challenges (in areas like dealing with interviews, communicating with co-workers, managing our time, avoiding burnout or health problems due to not realizing when we're tired or hungry, etc.) more often than nonautistic people do as a function of how our brains are wired.

But in the intersection where our brains meet the workplace, there seems to me plenty of opportunity for barrier-removal and examination of the factors that can contribute to our having difficulty. In this series I am going to discuss what some of those barriers are, how I've addressed some of them, which ones I'm still struggling with, and what things I think others might be able to potentially apply in their own situations.