A Quick One: Why Must Atypicality Justify Itself?

Why is is that non-typical things (and people) are held to an extremely high standard of self-justification, whereas more typical things (and people) get to have their existence taken at face value?

I came across a comment today (I don't remember the exact site) in which someone was making the claim that even if an autistic person was happy and okay with being autistic, we (there's that lovely non-inclusive "we" again) still have an obligation to prevent future people from being autistic. The reason? Because there's apparently "no reason for autism/Asperger's to exist."

(and no, this person didn't even bother claiming that he was only talking about people with "severe difficulties" -- he was including everyone who might presumably fall under the "autistic spectrum" umbrella, as far as I could tell.)

My first response to this (internally) was, "Wha?!"

See, as far as I know, there's no "reason" outside conscious awareness for anything to exist in the first place...stuff just sort of exists, and different people find meaning and value in different parts of existence. Maybe it's my vaguely existential tendencies talking here (if so, it's all Joss Whedon's fault!), but I think it's perfectly valid for people to decide for themselves that their existence -- however they might happen to be configured -- has value for its own sake.

Which means that autistic people (regardless of what their "label" happens to be, if they have one) have just as much right as anyone else to assert that there's nothing wrong with the fact of their existence, or the existence of similar others. The idea that any deviation from the norm needs to provide extra justification points for its existence is just plain silly. Real life is not some kind of assembly line, and people are not interchangeable parts.

There is no set of figures or statistics that can possibly provide an "objective" guide to configuring humans on some grand scale of promised "improvement". Either you decide that people are valuable for their own sakes and keep that in mind when making decisions from that point on, or you decide to play the "leaky lifeboat" game of looking at all of humanity with the goal of deciding who it is okay to throw overboard.

To me, it seems obvious that the former position is more ethically sound, but it sometimes seems to be very hard to justify it in ways that others can readily understand.

(Obviously this isn't some kind of hard-and-fast guide, and I am not suggesting everyone go home and snuggle with a serial killer because "everyone just needs to be loved". Rather, I am talking about a general weighting of attitudes, in which a person cultivates a default position of presuming value and seeing where that presumption takes them.

My guess is that if more people did this, there would be a lot less in the way of "writing people off" and/or assuming that because you can't understand how someone else could be happy, their own assertions to that effect can't be taken as anything more than signs of ignorance or "resignation to a lesser life").

On Putting One's Eye on the Ball

Gym class was, more often than not, an utter nightmare for me during my school years. There were a few activities I liked and even excelled in (obstacle courses, jumping rope, the flexed arm hang test), but we never seemed to spend much time on those activities. For the most part, PE time meant chaotic, ragtag versions of team sports.

I was horrible at sports. Really horrible. I found the "team dynamic" incomprehensible to begin with, to the point where I often had to be reminded which team I was on. I generally had no clue what I was actually supposed to be doing at any given time. Team sports in particular seem to require a type of attentional breadth and vigilance I can't reliably access, and that seems to make other kinds of (necessary) cognition fizzle out from overload very quickly (which is part of the reason I hated both gym class and mandatory recess kickball growing up -- they didn't relax me or help me concentrate on studies afterward, they just left me confused and frazzled and more prone to melting down).

Plus, everything seemed far too fast-moving and unpredictable for me to possibly keep up with.* The mechanics of throwing, kicking, catching and hitting projectiles flying or rolling in my direction also pretty much eluded me throughout my entire elementary and secondary education. My motor planning was so bad that I couldn't even catch a softball in a glove when the teacher rolled it to me across the ground from a few feet away.

My memories of participation (if you can call it that) in ball-based games consist mainly of whirling confusion, garbled voices echoing through gymnasiums, getting hit in the head by balls I didn't see coming, jeers from classmates, nasty-smelling mesh shirts, getting picked last for teams, not getting picked at all and having to be "assigned" by the teacher (to a chorus of groans on the part of those who ended up "stuck" with me), and wandering in day-dreamy circles in the distant outfield.

As a grownup, I am still not so much into sports; I find watching them to be mind-numbingly boring, and I have no desire whatsoever to go out and join the local softball league. Nevertheless, it does seem that some skills have come online that I'd never in a million years have been able to predict the appearance of.

For years I thought I was totally hopeless at hitting a ball with a bat -- I don't recall ever actually hitting the ball (beyond the occasional accidental "bunt" or foul) during any childhood bat-oriented game session. This didn't bother me in particular, as I had no ambitions to become a pro athlete, but at the same time, I remained mystified at how anyone could possibly manage to use a stick to hit something flying through the air at them.

Recently, though, I somehow found myself in an impromptu backyard bat-and-ball session in which me, my SO, and his little niece and nephew were taking turns throwing a ball so one of the others could swing at it. I hadn't attempted to hit a ball with a bat for probably at least thirteen years prior to this session, and I had no expectations whatsoever of actually hitting when it came my turn to try.

Nevertheless, I hit it. Matt threw it again. I hit it again. I kept hitting it. I was shocked! Somehow, something about the relationships between bat and ball and timing and movement had managed to coalesce in my brain over many years of doing absolutely nothing to improve my hitting prowess.

In a flash, I also found that I understood what it meant to "keep one's eye on the ball" -- I'd heard that directive many times in my youth, but it had always sounded amusingly grotesque or obvious (in the "of course my eye is on the ball, but that doesn't tell me how to hit it with the bat!" sense) rather than actually descriptive of anything that would help me hit. Now, I could grok that keeping my eye on the ball actually had something to do with keeping track of where the ball was in relation to the bat, a concept which simply hadn't connected before.

Matt hadn't ever seen me try to hit a ball before, so he had a hard time figuring out what I was making such a big deal over, and he commented that he was giving me "easy" pitches. And I don't doubt that in the grand scheme of things, they were easy pitches -- even I could tell they weren't exactly fastballs, and I was using a kid-sized foam-covered bat -- but that didn't matter. Previously I'd not been able to hit any pitches!

Again, I'm not planning on going out for any teams. But I did want to write about my experience with apparent spontaneous batting ability, as it never ceases to amaze me how nonlinear skill acquisition can be at times!

---

* Minor exceptions to this were badminton -- which utilized a somewhat slower-moving projectile -- and indoor hockey, which allowed me to pretty much ignore the humans and concentrate on where the puck was. Somewhat amusingly, hockey is the only activity that managed to get me sidelined several times for "violence", as apparently I was pretty possessive of the puck when I had it, and not above thwacking people with my stick!

Help, Accommodation, and Non-Standard Needs

One of my regular volunteer activities includes mailing books to Methuselah Foundation donors. I don't mind this task at all, though the transaction e-mails (I get the receipts in my inbox every day) can certainly pile up over time -- it's pretty straightforward, which makes it a sustainable activity given that my day job takes up the vast majority of my waking hours during the week.

But this post isn't about volunteer activities, per se -- that's just background. What I'm really here to write about today is the concept of assistance -- specifically in light of social perceptions regarding what kinds of help it is and isn't okay to need (or refuse, for that matter).

Since I get alternate Fridays off work, these Fridays present an opportune time for me to print address labels and mail out books. There's a mailing centre in a small strip mall about a quarter mile from my apartment, and I usually go there to send things off. Perfectly reasonable, right?

Well, I certainly think so, and so far nobody has tried to stop me from doing this, but I have run into some rather odd responses and attitudes in the course of this ongoing mailing activity. If I have a lot of books to send (more than 15 or so), I will wait until a Saturday or a convenient evening when my partner can provide car services (and nobody ever bats an eye at that; it's perfectly reasonable, I guess, to commandeer the trunk of a car and another person's arms for transporting books) -- but if I only have a few and decide to transport them on foot, things are very different.

For some reason, people seem to think it tremendously odd when I walk to the postal centre carrying the books, usually in two reusable shopping bags (one in each hand). I can carry up to around 15 books this way, and the way I see it, it's a win-win situation: I get a nice dose of much-needed exercise, and the books get mailed.

And yet, quite often when I'm walking down the street, I get people yelling out their car windows, honking their horns, and (if they are pedestrians) running up to me and asking if they can help. I'm not totally certain that the yelling and honking are directly correlated with my carrying the bags of books, as people have been yelling at me out car windows for practically as long as I can recall for some reason, but it definitely seems to happen more when I'm carrying stuff.

As for the pedestrians who offer to help, what amazes me about that is how hard it can be to fend them off at times! It's not enough to say, "No thanks, I'm fine", apparently -- this kind of response will more usually garner me an "Are you sure?" than a respectful retreat.

The mailing centre employees sometimes express concern as well -- I think they've gotten used to me at this point, but initially I had to reassure them that no, I wasn't being "abandoned" to carry the books unaided. I have been encouraged in no uncertain terms to solicit rides and pretty much insist on being helped, to the point where it's clear to me that it must be quite socially acceptable to get assistance carrying objects (perhaps especially if you happen to be 100 lbs and female). Not only is it not considered sad or tragic that I can't carry 30 books at once -- I apparently wouldn't be considered "burdensome" if I were to essentially demand help with carrying 15 books, even though I can easily manage 15 books on my own!

This sort of thing happens to me at work as well.

In my job as an electromagnetics engineer, I deal with a lot of weird-looking hardware, some of which is heavy, and some of which isn't. I've also been carting around a lot of empty boxes and piles of packing material lately, as we've been getting some nifty new items in. Anyhow, as a result of all this carrying-to-and-fro of Stuff, I've noted some interesting phenomena. Thankfully, there aren't any automobiles zipping through the building filled with occupants who like to yell out windows, but I still get a lot of people trying very hard to help me.

And...well, while I quite like having help when I'm trying to get a 90-pound amplifier onto a shelf, I am not so much about having people randomly hold doors open for me or try to grab light and easy-to-carry items out of my hand when I'm perfectly fine carrying them unaided. No, I'm not on some "macho woman" trip -- this has nothing to do with gender, at least on my end -- it's just that if I am in the process of trying to push a cart or open a door or even carry an empty box down the hallway, adding "human interaction" to the task tends to turn it from something perfectly manageable into something ridiculously confusing.

Seriously -- if I am carrying something or trying to open a door, and you rush over and either try to take the thing from me or manipulate the door yourself, you are likely to see me either dart away like a spooked squirrel, wave my arms, squeal, start repeating some phrase over and over again (usually something like "Get back! Get back! Just get back!"), or responding in any other number of (most likely) unexpected and odd-seeming ways. I do not react this way "on purpose", nor do I mean to be or seem rude -- it's just that I have a very sharp breakpoint in my response curve as far as navigating multiple environmental/perceptual variables goes.

Anyone who is around me long enough will probably see me react as described above at some point. I don't lash out and attack people physically or anything (my reactions tend far more toward "flight" or "freeze" than toward "fight"), but apparently I do manage to alarm, scare, or even offend people at times with my reactions to certain situations. I've gotten better at dealing with this, and at avoiding it in the first place over the years (particularly since finding out I was on the autistic spectrum), but it still happens from time to time.

Anyway, though, the thing that made me want to write this post was the realization that there seem to be:

- Certain kinds of help that are okay to ask for
- Certain kinds of help that people seem to think others are obligated to seek or accept
- Certain kinds of help that are almost impossible to explain the need for
- Certain kinds of help that don't seem like they require much (if anything) in the way of money or materials, but that people aren't supposed to ask for or need.

As far as I can tell, nobody thinks it's bad or weird for me to ask for help carrying heavy objects. In fact, if anyone so much as sees me trying to pick anything up or carry something, they are apt to not only offer help, but practically insist on giving it, even if I try my very best to make it clear that (a) I don't need it, and (b) they're making things more difficult for me by continuing to push it on me.

This also happens in other circumstances -- e.g., once I was in a software training class, and for some reason the instructor decided to single me out as needing "special instruction", so he stood behind me and kept pointing at things on the screen and telling me out loud what to do. I found this incredibly annoying, as I'd been doing fine on my own (I'm quite good at figuring out software interfaces) and he was distracting me with his pointing and commentary -- and I ended up having to tell him multiple times to go away and leave me alone before he actually did. I didn't need or want his help, and there were a zillion other things he could have been doing rather than micromanaging the contents of my screen, and yet, he didn't exactly rejoice at being freed from the "burden" of helping me.

On the other hand, often when I try to explain things that actually would help me (e.g., "If I'm opening a door, please don't run up and try to open it for me, because you will end up messing with my visual perception and motor planning"), people either tend to not believe me, not understand what I'm asking, or act as if I must be trying to impress them with my self-reliance or physical door-opening (or object-carrying) prowess. Which I'm not. Sometimes, quite frankly, the best way to help me is to avoid helping me, but this is extremely difficult to communicate to others.

And then there's the matter of "accommodations". I was authorized to receive some accommodations in school through the Disabled Student Services department, such as extra time on tests in college, and the opportunity to take tests in a quiet, less crowded room. When I was actually able to wrangle the logistics, I definitely did better on my tests (I still don't think I'd have been able to graduate without the accommodations I did have), but sometimes the teachers I asked to sign my test authorization forms reacted so negatively that I just didn't have it in me to push the issue. Some of them said things like, "It's too inconvenient for me to have you take your test outside the regular class period" -- and not having any real self-advocacy skills at that time in my life, I tended to just back down upon hearing that, figuring that I had "no right to special treatment" or even supposedly "reasonable accommodations" if they were truly that much of a hardship for my teachers.

If I were in school now, I'd be a lot more assertive. I used to feel as if I had to be "totally self-sufficient" otherwise I didn't even deserve to exist, and this led to a lot of really nasty periods of utter self-loathing, guilt, and "pushing" to the point of putting my health in danger (at one point in college I took a urine test and was told that I was "digesting my muscles and internal organs" due to not eating enough). I don't feel that way now, and in many ways I am a lot more "self-sufficient" than I used to be -- go figure.

I've had so many experiences of being offered help (help that clearly involved people "going out of their way") that I didn't need that anyone who tries to tell me that accommodations are a resource problem (and that people who don't want their differences "cured" are somehow selfish or lazy or worse) immediately goes on my "this person is lacking in clue" list. So often, when I see or hear of people complaining about having to accommodate someone else's non-standard need, it strikes me as a complaint about having to shift or disrupt the status quo rather than a rational complaint about a true and unfair hardship.

I really wish people would at least consider this before making knee-jerk arguments about nonstandard people being "resource drains".

Humans help each other. That's what we do as a (hopefully) civilized species -- we're supposed to have risen above all those harsh, ruthless "laws of the jungle" at this point! And sure, sometimes this is how things end up working out, as cooperation clearly exists -- but I still think a caveat is warranted regarding assuming you can just offer the same kinds of help to everyone and have it actually be useful to them.

Bottom line: Help shouldn't be about getting someone's gratitude or feeling like you've fulfilled your token obligation -- it should be about actually, you know, helping someone. Personally, I like it when people let me know when my actions aren't actually helping them -- I'd much rather them be honest than pretend to appreciate something they don't. And the fact that some people need different kinds of help than others doesn't mean that they are somehow objectively "diseased" -- it just means that the definition of what meaningful help is needs to become more flexible in order to create a more welcoming society for all.

Links I Have Liked Of Late

I'm working on several posts in the background (which is pretty much an ongoing thing for me), but I've been reading some things lately I figured were worth pointing people to. Enjoy, and be informed!

Longevity Links

1.) A good example of properly-applied critical thinking in longevity science can be found at Ouroboros - Research in the Biology of Aging in an entry entitled Sirtuins come under fire:

Over the past few years, sirtuins have generated great excitement — both in the basic study of biogerontology and (more recently) in the private sector. In just over a decade, the field has moved from its founding observations in yeast to wide-ranging results in mammals. Among the adherents of a widely held theory, it is believed that sirtuins act to extend lifespan via similar mechanisms to calorie restriction (CR), and that small-molecule activators of sirtuins (such as resveratrol) are CR mimetics — therefore, the sirtuins are the first molecular target to guide drug design in a bona fide anti-aging pharmacopoeia.

As theories reach maturity (and middle age), they are naturally subject to challenge, and the sirtuin story is no exception. The role of sirtuins in CR has been challenged, sometimes by the very founders of the field. The mechanism(s) of action of resveratrol are also under close scrutiny. Even some of the most famous studies of sirtuins — specifically, regarding effects on median lifespan and exercise tolerance — used animals eating such horrifyingly fatty diets or ingesting such gigantic doses of resveratrol that their relevance to humans must be questioned.

2.) Bill Thomas at Changing Aging reports on a bizarre case of someone being declared 'too old' to serve as an expert on aging:

Professor Gloria Gutman has the kind of credentials that should guarantee a long, fruitful stay at the peak of her profession. She developed and directs the highly regarded Gerontology Research Centre at Simon Fraser University in Vancouver. She's written or edited 20 books and more than 100 scholarly articles on such issues as housing for the elderly, dementia and long-term care. Her work is recognized beyond Canada's borders -- she's president of the International Association of Gerontology, representing organizations in 63 countries.

But last summer she faced a problem. On July 17 she turned 65. At Simon Fraser, as at many institutions and workplaces across Canada, that's the age of mandatory retirement. Happy birthday! Here's your watch, there's the door. One day you're 64, an internationally respected member of the faculty. The next, you're too old to be employed as an expert on aging.

How weird!

How weird, indeed! I've always figured that while people should certainly be allowed (and enabled) to retire, there's really no sense in forcing them to! My guess is that as more people start living longer and feeling better in their later years, we're going to be looking at a pretty massive shift in how the concept of "retirement" is viewed and put into practice. If someone is doing work they love and excel at, why the heck would you kick them out?

3.) The British organization Help the Aged seeks to:

...free disadvantaged older people in the UK and overseas from poverty, isolation and neglect. Understanding the needs of older people is fundamental to this work and we are committed to supporting and promoting high-quality research.

Research is central to the Charity's mission of securing and upholding the rights of disadvantaged older people in the UK and around the world. We fund vital research on ageing, we influence its direction via the academic and research community, and we promote the effective dissemination of research findings that will have the greatest impact on policy and practice.

Our policy research drives our campaigns and ensures that older people's voices are heard. And through our special trust, Research into Ageing, we currently fund some of the best and most needed biomedical research, which will improve our understanding of health in later life.

I don't personally live in the UK, but I still thought this site/group was worth mentioning -- I particularly like their emphasis on ensuring that older people's voices are heard, and on helping address issues like poverty, which are every bit as important as the stuff that goes on in laboratories.

Autistic Advocacy Links

1.) An older but excellent post from Bev at Asperger Square 8 entitled For Parents makes some great points about the purpose and benefits of autistic self-advocacy for all persons on the spectrum. I wholeheartedly agree with her, and I'm glad I came across this post today, as it tidily expresses a number of things that I think really need to be expressed (such as the following):

If your child is autistic and you want a better life for him or her, I am not your enemy. I want a better life for all autistic people. However they communicate, however well or poorly they score on standardized tests. Whether or not they have medical problems in addition to neurological differences, whether the diagnosis is autism, Asperger syndrome, PDD-NOS or something else altogether, I want the best possible life for every person on the spectrum.

By “better life” I mean physical and mental health and I mean freedom from harassment and discrimination and institutionalization. I want respect for your child and accommodation as needed and I want them to have jobs if they want jobs and friends and partners if they want that. I want your child to be happy and healthy.

...

If you have a child on the spectrum and are hoping to cure him or her, hoping to get rid of the autism, I don’t want to argue with you. Most likely, you and I don’t even use the word “autism” to mean the same thing. If you are one of these parents working to change your child, know that I am working, too. If your quest to change the course of autism fails, perhaps the quest to change societal attitudes will fare better. In which case, your autistic child might have a less hostile world to live in.

That is why I do this.

2.) A recent post entitled My-Blindness (a bit of a play on "mind-blindness", but with a refreshing twist) by Susan Senator, author, bellydancer, and mother of three. Her eldest is 18 years old and autistic. She writes:

I despaired over his autism, because I thought that it was getting in the way of his happiness. But it was really getting in the way of mine. But for him, maybe it was just that he was not ready for those kinds of interactions, and did not make them a priority until he was. Now he loves to be with other kids, other people. And still, he doesn't like talking to them, which is basically all I do with other people I like. So I've learned: Nat has his way, I have mine.

What Nat knows and doesn't know is a bit of a mystery to me. What human is not a mystery to another? We think we know what someone is thinking, we take pleasure in predicting another's actions, or perverse pleasure in recounting another's allegedly evil agendas. But how often are we right?

3.) Amanda Baggs covers the (ridiculous) case of megacharity "Autism Speaks" censorship of an autistic blogger's T-shirt design on Zazzle.com.*** Several people have written about this incident, but I wanted to quote Amanda's piece because of how she put a particular, important point (emphasis mine):

[A prominent "Autism Speaks" spokesperson] also says, after wondering out loud whether the spectrum is too wide by including Asperger’s at all, that Autism Speaks focuses on the “low functioning” end of the autistic spectrum. If this is so, then they shouldn’t be using the number “1 in 150″ or “1 in 166″ in all their advertising. These numbers explicitly include people labeled with Asperger’s and other people labeled high-functioning. You can’t use a set of people to get money for your cause and then claim that they aren’t the ones you’re talking about.

*** EDIT 6/27/08: Turns out that it wasn't actually "Autism Speaks" prompting the censorship this time -- the t-shirt maker explains here that the whole mess seems to have been the result of a Zazzle employee's butt-covering efforts. Apparently there was a bit of a mix-up over copyright laws and the interpretations thereof, but things have been settled now and the disputed shirts are still available.

(Thanks to Cody at Normal Is Overrated for the heads-up.)

And bear in mind that none of this negates the observation of Amanda's that I quoted above, regarding the apparent lack of math and logic skills rampant in some advocacy organizations -- it is still true that some people are claiming that any autistic person capable of self-advocacy shouldn't have a say in the representation or treatment of autistics, even though plenty of people fully capable of writing and communicating in other ways are part of the "1 in 150" statistic so often employed in the scaremongering process.

Gratuitous Cuteness!

And finally, a cute kitten video I took this weekend - this kitten, named Toby, is currently rooming with Matt's parents, who live nearby. Cute kittens are definitely one of those things that, in my humble opinion, make existence wonderful. =^_^=

Science, Social Justice, and Autistic Self-Advocacy

There are two perspectives (and by "perspectives" here, I mean "ways of looking at things") in my head that I sometimes have difficulty harmonizing with one another as far as autistic self-advocacy goes.

One perspective is extremely data-oriented and considers scientific research (ideally performed in collaboration with researchers who are themselves autistic) to be of paramount importance in characterizing autistic neurology and cognition.

As for why this characterization is important in the first place (aside from the science stuff frankly just being really interesting to a brain-geek like me), this perspective also figures that many of the problems faced by autistic people and our families stem from misconceptions about what autism is -- misconceptions which deny our strengths, misconstrue the reasons behind our behavior, and prompt all sorts of ridiculous assumptions about what we must intrinsically lack (e.g., self-insight, capacity for compassion, etc.).

This perspective is also the one from which I often feel compelled to point out, upon encountering people who invoke the standard litany of "will-nevers" ("she will never live in her own apartment or house, she will never make friends, she will never marry, she will never drive, she will never go to college", etc.) in response to learning that someone happens to be autistic, that these "will-nevers" are by no means justified by the facts.

Now, of course some people truly "will never" do one or more of the things on the above list; I'm presently in the "possibly will never drive" zone myself, for instance.

But nevertheless, it is a fact that autistic people (including some who had speech delays or other indicators often assumed to indicate "low functioning" as children) sometimes do end up growing up capable of doing many things nobody could have predicted when they were younger.

It is a fact that research has revealed areas of measurable strength common to many autistics.

And it is also a fact that, from an historical standpoint, the very first documented study of autistics (in which the word "autistic" was used), included the following observation:

Even though most of these children were at one time or another looked upon as feebleminded, they are all unquestioningly endowed with good cognitive potentialities...The astounding vocabulary of the speaking children, the excellent memory for events of several years before, the phenomenal rote memory for poems and names, and the precise recollection of complex patterns and sequences, bespeak good intelligence in the sense in which this word is commonly used.

- Leo Kanner, 1943

So, basically, from a scientific and observational standpoint, the notion that being autistic automatically brings with it a global cognitive deficit is just plain wrong. It was wrong in Kanner's time, and it is still wrong now. And the wrongness of claiming that someone has this or that deficit, in this context, has nothing to do with making value judgments about people and everything to do with perpetuating misconceptions that could lead to some people being essentially "written off" as not worth the time and effort it might take to educate them or provide them with enrichment opportunities.

The other perspective, however, is much more social-justice oriented, figuring that the longstanding disability rights movement (as well as the superset civil rights movement) have already done all the major philosophical work that autistic advocates need to draw on.

Additionally, this social justice perspective is in some ways orthogonal to the question of what autism is -- it is less concerned with trying to figure out how autistic brains work than with trying to figure out how to secure basic civil rights for people currently labeled or identified as autistic. It is even, at times, leery of fixating too much on the data the scientists like so much, as the data-gathering process (even when done well) might be backed by entities with a primary interest in, say, coming up with a means to identify autistic genes for the sole purpose of eugenically preventing future autistic people.

Moreover, there's also the matter of what the scientific perspective's focus on dispelling misconceptions leaves unsaid. If it is wrong to assume that all autistics have global, severe, cognitive deficits, does that make it somehow okay to write off people who do have global, severe cognitive deficits? I would personally say "absolutely not", and I don't think there's anything inherent in the scientific perspective that claims it's okay to abuse or neglect people once they can be considered "sufficiently disabled", but this kind of discussion does come up from time to time, and it does concern me.

A great example of something the social-justice sector of my brain wholeheartedly agrees with is the essay The Thing Itself Is The Abuse, from the Biodiverse Resistance blog.

It's not the inherent wrongness of the treatment that is discussed, it is the supposed "horrible mistake" of subjecting someone to that treatment when that person actually turned out to be not a member of the category of people that it's considered acceptable to do this sort of thing to. No thought is given to why it's supposedly "acceptable" to do it to people who are in that category, despite the fact that, in both cases, the reporting of the incident blatantly begs the question: if it was horrible and inhuman and inacceptable to do this to one person "by mistake", what is it to do it to a whole "Othered" class of people deliberately?

Clearly, there are at least two main "things" going on in all this -- first of all, there's the question of what it means for a person to be autistic (and the implications of this for advocacy, for who is considered "qualified" to self-advocate as an autistic person, etc.). And second of all, there are the very real (and extremely distressing) problems of abuse and neglect of, and failure to educate and provide opportunities to, individuals with all types of disabilities.

I want to be able to acknowledge and deal with both these things without having my efforts to do so come across as somehow being ignorant of the other -- e.g., if I point out that plenty of autistic people do actually go on to learn to type or speak, and make friends, I don't want this to come across as denigrating those who cannot type or speak even as adults. I care about them, too, and I would hope that anyone advocating for more ethical treatment of disabled persons would agree that it is not any particular "ability level" in anything that grants a person the "right not to be abused", but that the fundamental problem here lies in the assumption that certain kinds of people can and even should be subject to "extreme aversives" or levels of tranquilizers sufficient to stupefy them.

I have been trying for ages to figure out if these perspectives (the scientific and the social-justice) are compatible, and fundamentally I guess I believe that on some level they are, but it's so difficult to navigate the language around this stuff that I sometimes despair of ever being able to explain why and how my own overall perspective makes sense, even to me.

The closest I can get to that right now, I suppose, is saying that while social justice has nothing to fear from truth (as revealed by properly-done science), science is still a human endeavor, and therefore subject to untoward influence as far as how experiments are designed, conducted, and interpreted. And far from being "anti-scientific", autistic self-advocacy can directly support scientific endeavors by asserting ourselves as stakeholders, even as we work in other contexts toward better ethical standards for all people, regardless of presence, type, or level of disability.

Actual Disasters, A Conference Announcement, Shady Autism "Gurus"

Okay, there's a lot going on right now -- here are some links and notes on matters that have managed to grab my attention recently.

(1) An online friend recently pointed out a way to help the people affected by Myanmar cyclone, and I figured I'd pass along the link.

The International Burmese Monks Organization is partnering with Avaaz.org to, per their web site, "provide direct support to the people of Burma". Apparently (and this is something I didn't even know until yesterday personally), the country's junta military is restricting direct distribution of international aid.

I can't even fathom how any person or group could possibly be thinking of whatever weird power agendas they have going at a time like this over and above people's lives, but anyway. Right now the monks and nuns in Burma represent a channel through which concerned members of the international community can maximize the chance of their donation actually helping the citizens in direst need. You can read more about the monks on burmesemonks.org, and donate via Avaaz.org. I know there's no way to reclaim the lives lost so far, but there's at least some opportunity to help prevent further deaths in the aftermath of the disaster.

(2) Regarding the Sichuan earthquake: my employers are doing a matching-donation thing, so I'm most likely going to go that route personally -- however, I only found out about that opportunity by spotting an inconspicuous sign on a bulletin board outside the cafeteria. If you're currently employed, you might want to ask around/investigate to see if your company is doing anything similar.

Additionally, anyone can donate to the American Red Cross, who are also working on coordinating relief efforts with the Chinese Red Cross and routing supplies to the earthquake victims in China.

(3) H/T to Robin Zebrowski for noting this on her blog: apparently, a conference entitled Cognitive Disability: A Challenge to Moral Philosophy is being held from September 18 - 20, 2008 in Stony Brook Manhattan, New York, USA.

From the conference web site:

The realities of cognitive disability pose a significant challenge to certain key conceptions philosophers have held. Philosophers have conceived of the mark of humanity as the possession of rational cognitive capacities. They have traditionally extended the mantles of equality, dignity, justice, responsibility, and moral fellowship to those with these abilities, whom they speak of as "persons." What then should we say about those with severe cognitive disabilities? How should we treat these individuals and what sorts of entitlements can they claim? Should we grant the arguments of some philosophers who want to parse our moral universe in ways that depend on degrees of cognitive capacity, not on being human? How do claims for the moral consideration of animals bear on the question? Is it morally acceptable to consign some human beings to the status of "non-persons"? Philosophers have rarely faced these questions squarely and systematically.

Speakers include public intellectuals such as Michael Bérubé, Ian Hacking, Martha Nussbaum and Peter Singer. The conference will explore philosophical questions about three specific populations—people with autism, Alzheimer’s disease and those labeled “mentally retarded” —and will raise ethical and foundational questions on regarding both theoretical and practical matters.

I'm nowhere near New York, but seeing as the conference specifies that they "...also welcome those with cognitive disabilities who would benefit from and could contribute to the discussion.", it would be super cool if some autistic or other self-advocates could attend. There are so many cans-of-worms (fractal cans of worms, even!) in the description of the conference alone that it would not behoove me to get heavily into them here, but suffice to say that I have problems with assuming that in order to be considered a "person", one must be either genetically human or possessed of some specific (usually status-quo mediated) ability set.

Hence, I was very pleased to see Anita Silvers on the list of speakers, as she is awesome when it comes to human-difference stuff (I saw her present once and her paper was called "The Right Not To Be Normal As The Essence of Freedom" -- how cool is that?). I mean, I know Peter Singer is pretty gung-ho for animal rights and helping the poor and all, but frankly he scares the heck out of me with his utterly matter-of-fact disregard for the value of the lives of disabled humans.

The entire discourse in this area needs a lot of work -- right now, it's still sadly far too dominated by what amounts to the trumpeting of neo-eugenics on one side, and simplistic creepy religio-moralizing about "human exceptionalism" on the other.

As Robin Z. eloquently commented: "I think it’s past due time that people started having to contend with their views of morality (and ontology, and metaphysics) that presume cognitive (and physical) outliers are exceptions to the rule instead of equally valid members of the group that demonstrate and define the rules." Hear, hear!

(4) Joel Smith has written a good post on the problem with "autism gurus":

Autism seems to attract a disproportionally large number of “gurus”.

For instance, we have doctors peddling their “detoxification” treatments - which require exact adherence to the wisdom of the guru, uh, doctor’s orders (you’re not supposed to notice that few of the doctors peddling detoxification agree on how to do detoxification, nor do most mainstream doctors think there is a shred of support for detoxification of autistics as a treatment - the GURU’s wisdom is what is important, and it must be done exactly his way!)...

...The problem with all of this is that often the gurus, although they may truly believe they have a gift, are full of the very same feces they seek to eliminate. Good intention is not the same as truth. So while I believe that many of the gurus truly are sincere, I also believe them to be wrong. And I have a message for parents, teachers, staff, and others who want to know the deep secrets of understanding autistic people:

THERE IS NO SECRET KNOWLEDGE TO BE LEARNED. You don’t need to know the dark secrets of the depths to interact successfully with autistic people.

Good stuff, Joel -- "gurus" in general make me VERY nervous, regardless of what they're pushing, so I'm always glad to see attention being drawn to the problem of folks who see themselves as the Savior[s] of Mankind (for a fee, of course).

(Also, a request: please read carefully and spend some time thinking about this stuff before commenting if you're going to comment -- I've had it up to here with the Jerking Knee this week...)

Like It Or Not, Everyone Needs Stuff

The quote below from Whose Planet Is It Anyway? caught my eye today:

What's such a big deal, anyway, about the simple fact that it costs money to educate us [autistic/disabled/atypical/etc. people] and to provide the services and products that we need? Guess what, the same is true of your family, pal. The only difference is that society has categorized your family's educational and other needs as "normal," while arbitrarily excluding others from that privileged caste. You're no more deserving and no less expensive than anyone else—you just have the home field advantage.

Read it, folks. And if you don't get it, read it again.

Bottom line: Everyone needs resources to survive. Yes, even really really rich people who meet or exceed contemporary standards of attractiveness. We all need to eat, sleep, breathe, and excrete. We all need protection from the elements and other dangers that would otherwise threaten our vulnerable meatbodies. And we all ought to have access to appropriate opportunities for education, cultural participation, and enrichment.

There is no way around using resources -- for anyone. And I have had it up to here (places hand at forehead level) with people making alarmist claims about the "cost" of caring for or educating one group or another. I get that stuff and time are both limited, and I also get that practical factors will invariably come into play as far as figuring out how to distribute resources. But there is no good reason to presume that because a given person or group has nonstandard needs that the mere existence of that kind of person constitutes a "crisis".

If there are really THAT many people with atypical needs, maybe that ought to be taken as a sign that something is wrong with the way our society is structured -- NOT that the world has been inundated with supposed "defectives".

I will consider it a good day indeed when the supposedly-inclusive "we" so often invoked in discussions of what "we" need to do about autism or anything along those lines actually includes the people being talked about.

"We" are not interlopers in "your" society -- society consists of all of us, and it seems hideously wrong for some to sequester themselves off in some kind of "well, we're okay!" bubble while the rest are assumed to be nothing more than parasites or interlopers. Like it or not, different people have different needs. If you don't like that, fine -- but at least come clean with the fact that you don't like it, rather than couching your assertions in the language of "helping".

And finally, I'm all about trying to find ways to use resources more efficiently. Sustainability is a growing concern of mine, and I do not deny the fact that resources are limited (in the absolute sense that the universe contains a finite amount of matter and energy; I'm pretty sure that there's more than enough "stuff" on Earth to quite comfortably support the existing population, and that distribution problems are primarily political and logistical in nature as opposed to functions of absolute scarcities).

But I do not think it is necessary or ethically responsible to invoke the widespread devaluation of people with atypical needs as a "sustainability strategy".

It's hard to fathom sometimes how people who by all marks and measures seem to fancy themselves "intelligent" and "civilized" persist in perpetuating what amount to the lowest forms of common barbarism, however dressed up in the verbiage of "compassion" and "progress" they might be.

---

PS: I'm not interested in any comments along the lines of, "But you don't understand! Some people do cost more than others to care for, and we can't ignore that fact!"

I'm not suggesting that fact should be ignored -- I'm just saying that the issues around that kind of thing are more complex than a lot of people seem to think they are, and I'm also trying to encourage people to think in terms of how social and cultural structures might be changed so as to be more flexible and inclusive.

I can't imagine that humanity has exhausted its creativity in this regard yet, which is why I'm rather confounded by the seeming emphasis these days on trying to alter or "prevent" certain kinds of people -- people who themselves have asserted that no, they are not "suffering" for the mere fact of being configured the way they are. To me, it seems terribly defeatist to presume that "oh well, we can't change the world or fight prejudice anyway, so let's just try and mold people according to the status quo and all the prejudices it currently contains." I mean, talk about an unimaginative approach!

"Autism Awareness" and the Dangerous Futility of Hype

How Hype Hopes to Help, but Hurts

April is "Autism Awareness Month". I have mixed feelings about this, and I am not the only one.

For one thing, "awareness" these days looks rather uncannily like socially acceptable apathy. Slap a ribbon ribbon magnet on your car, or wear the right lapel pin, and you are subsequently excused from actually doing anything real to change things for the better in the world. Sure, some people displaying the plumage of their favorite cause(s) are actually engaging in helpful action, but it seems to me more and more that the plumage has become an end unto itself in some contexts.

And even worse: a lot of people seem to be mistaking "hype" for "awareness".

Case in point: the vaccine thing. It is literally impossible these days to look at a comment thread on any mainstream article about autism without seeing at least a third of the folks in said thread crowing about "vaccine injury" and how the "answer" to autism is to stop vaccinating, how "Big Pharma" is relentlessly poisoning children's brains on purpose, and how anyone who isn't using the latest biomedical supplement whoozywhatsit is falling short of their parenting duties.

Now, I personally don't believe in a vaccine-autism correlation of any kind. The evidence just isn't there as far as I'm concerned. But that's sort of beside the point, because even if vaccines had some minute chance of "affecting the developing brain", the diseases that vaccines are designed to prevent have a heck of a lot greater chance of not only "injuring" a person, but actually killing them than the vaccine itself does.

End of story, right?

Unfortunately, not quite.

As I write this, I find myself dreading releasing it for public consumption because I know it's going to come up in some antivaccinationist's Google search, and that I'm going to end up fielding endless, repetitive, and thoroughly ridiculous comments about how I don't know what I'm talking about, and how don't I know that Jenny McCarthy cured her son, and oh my goodness haven't I read Evidence of Harm? (All such comments will be summarily deleted, by the way -- there are plenty of places online for people to engage in that kind of argument, and I am under no obligation to host such an argument here).

That, I think, is a problem.

And it's not even just the vaccine hype causing the problem. The vaccine hype itself is actually, for all its wide-ranging (and undoubtedly destructive) rhetorical force, merely a symptom of the fear that underlies it. This fear isn't new, either: "changeling" mythology (in which a real child is thought to have been "kidnapped" and replaced by an elven or faery child) has been invoked in descriptions of neuro-atypical persons for years, and it seems very likely that the original mythology may have actually been established in response to the existence of "abnormal" children. The "refrigerator mother" hypothesis also predominated for a while (according to this hypothesis, autism was the result of "cold" and distant parenting, which caused the child not to develop normal social relatedness).

And in recent years, autism has been attributed to everything from the aforementioned vaccines, to television, to cell phones, to French fries, and even to demonic possession.

Now, most of the above are actually probably dismissed by most without so much as a second thought -- I don't actually run into very many people harping about cellular phones as a potential cause of autism -- but I have seen a surprising number of people who really, really ought to know better pandering to the antivaccinationists in their public remarks. And even among people who don't accept the vaccine hypothesis or any other crack-brained theory, there is still plenty of hype to be had -- plenty of assertions that autism is a "public health crisis" and that it is "imperative" to find a cure, a way to make autistic people nonautistic and prevent anyone else from being born autistic.

Now, you might say: "But what about the ones who are truly struggling? Who can't type on the Internet the way you do? Who might be aggressive, unhappy, angry, and frustrated all the time? Who break things and hurt themselves?"

What about them?

I do not deny that people who "really struggle" exist.

And I most certainly do not claim to "speak for" (or write for) anyone who cannot speak or write at all.

But I think I can say with full confidence that hype helps no-one. No, not even the people with "severe issues". (In fact, people with more limited communication skills are probably some of the ones who stand to experience the most harm from all the hype going around these days, as they are the ones likely to be assumed to lack personhood, making it easier for some to justify a "by any means necessary" approach.)

When are people going to get it into their heads that describing people as "empty shells", "vaccine-injured", "train wrecks" and "dead souls in live bodies" is not a good way to assure that they get whatever help they need to live the best possible lives?

When are people going to get it into their heads that you don't express concern for someone by completely dehumanizing them?

When are more people going to figure out that stuff like this is dehumanizing to begin with, and not just "common sense"?

I recognize that some people deal with very tough realities. I agree that there ought to be better services and more in the way of clear, accurate information for parents, autistic persons, educators, and caregivers alike. But right now the hype is standing in the way of those very worthwhile goals.

Ranting about the "horrors" of autism will not help any autistic child get a proper education.

It will not help an autistic adult get a job, or make friends, or live in a maximally self-determined manner.

It will not add anything useful to the cognitive and neurological studies that actually have a chance of figuring out how autistic brains work.

And it will not help counteract prejudice, bullying, or lack of understanding in anyone.

In short, it is the antithesis of what "awareness" is supposed to foster.

The "Emergency Mindset"

There's a difference between drawing attention to actual horrors and abuses that might not be very well-known for whatever reason, and trying to take something and make it sound as horrible as possible in order to get it on people's "radar", so to speak.

Drawing attention to abuses is important, as many abuses really do exist. Rooting out "sweatshop labor"? Definitely helpful. Helping teenage girls in a village avoid being forced into motherhood at 13 with their 40-year-old "husbands"? Again, a worthwhile thing to do.

But stating your suicidal-homicidal ideations in front of your autistic child in order to "raise awareness" of autism?

Not good, and not likely to help, and quite likely to actually hurt.

I can see how some of the stuff that eventually gets subsumed by hype actually starts out with worthwhile goals in mind (e.g., "We need more funding so that autistic children can get better educational services").

But over time, statements expressing worthwhile goals are replaced by alarmed headlines about what a terrible "health crisis" autism is, because of the need to fund services/education more suited to persons who think and perceive and function differently from the norm.

What it looks like, based on what I've observed in doing a lot of reading and following the media on various subjects of interest to me, is that quite often people start out honestly and sincerely searching for a way to help their child, their community, or humanity-at-large. Nobody can solve every problem in the world on their own, and no individual has the bandwidth to even think on a daily basis about all the things they might potentially be able to help out with. So what most people (at least the ones who are compelled to "do something" for whatever reason) end up doing is picking a thing, or a small set of things, to focus on.

There is nothing wrong with this. The impulse to help is not a bad thing (well, unless you're a big Ayn Rand fan, but that's neither here nor there). Basic compassion is one of the wonderful things we have: its existence is one of the things that ought to give at least some hope for a future not only worth existing in, but in which all persons can live and love and dream without such a spectre of fear as many today still know. But that precious impulse must be watched and examined. Good intentions and fear can actually coexist in the mind as very close cousins, and figuring out where deep, passionate care ends and abject terror begins can be fraught in the best of circumstances.

(I've personally wrestled with this a lot in looking at my approach to longevity advocacy -- I started questioning over a decade ago whether I was truly motivated by love of life and concern for others or by bottomless existential horror. I do love live, and I do not fear nonexistence, as in nonexistence there is no self to experience fear. But I know that as a human being with an evolved survival instinct, I am always going to have a twinge of dread associated with the idea of actually dying or watching loved ones die.

And I think it's important to coexist with that twinge of dread, rather than ignore it, pretend it isn't there, or imagine that I can somehow wash it away with sufficiently "pure" intentions. What I'm trying to do with it is use it to help me see when exuberance edges into hype, so I can avoid getting caught up in the self-defeating, harmful kinds of activities that characterize hype and its effects. Because when one truly cares about something, one cannot afford either pity or flight into fantasy.)

I've seen people in all the "causes" I've come across using hype. This is understandable in the sense that hype is terribly seductive.

I would think that if any culture actually valued a particular subset of its citizens, it would consider providing appropriate care and education for those citizens a matter of course! Calling the "costs" associated with autism a "public health crisis" is as ludicrous as calling the costs associated with raising any child a "public health crisis", in my opinion. Services are not a zero sum game, despite what the purveyors of hype would have you believe.

And I don't believe for a minute that dehumanizing and scaremongering can be rationalized by the "well, at least it gets funding" defense -- even if you do get funding via drumming up apocalyptic visions in people, it's more than likely that funding will be applied in ways that don't actually address the very factors that would likely lead to better outcomes for all.

But the thing is, once you can feel justified in declaring a situation an emergency, everything feels clearer and easier. Decisions can be made more quickly, with less input. Sacrifices can be made with less thought for what is being lost. The "mundane" details of daily living can be brushed aside. Regular people take on the guises of heroes and villains and martyrs. In short, everything starts to feel just a little bit more like an action movie.

Sure, it's exciting. Sure, it can make a person feel secure in the idea that they are Doing The Right Thing.

But it doesn't work. At least not when misappropriated to apply to situations where outcomes in the absence of drastic intervention are far less certain.

The world is full of risk, and a mistake I see being made more and more these days seems to be rooted in the assumption that the world is supposed to be a "safe place" by now. But since the world obviously isn't a totally safe place (goes the logic), we need to start responding to more situations as if they were grave emergencies. In other words, people are clamoring for more hype, because hype gets attention. And attention can lead to help, funding, and yes, "awareness".

But the problem in using hype as a vehicle for "awareness" or anything else is that hype tends to devour the worthwhile goals right from under you, sometimes almost imperceptibly. And then people suffer for it, only this new kind of suffering is seen as more acceptable than the kind that the hype-driven inteventions were supposed to rectify. (And sometimes, the "new suffering" is even seen as further manifestations of whatever the "interventions" are supposed to be helping with, which leads to more hype and fear, which drives the cycle crazily forward.)

In Summary...

Believe me, I do actually have tremendous sympathy parents of autistic children right now, as there's so much crazy and hype and hysteria and confusion and fearmongering surrounding the subject of autism right now that it's a wonder anyone can navigate through it without coming out more alarmed and perplexed than when they started seeking information.

But the thing to remember is: not all autistics are children. We do grow up, and we are affected as adults by how autism is presented in the media, how autistic children are talked about and responded to, and what assumptions are made about what kinds of lives we have the potential to lead, or that we are actually already leading.

That makes "autism discourse" very much our business. It makes it my business as a person on the spectrum. We are stakeholders in all this, just as parents are, regardless of what "functioning labels" or spectrum sub-categories we've been assigned to (Asperger's, PDD-NOS, etc.) or assumed to belong to.

(And it's not all just some problem with "labels", either: undiagnosed autistic adults and children alike are still vulnerable and susceptible to discrimination, bullying, and the unrelenting stress of dealing with unrecognized sensory sensitivities and cognitive differences. Yes, labels can carry a stigma with them, but the kinds of stigma that really need to be addressed have much more to do with how people actually are (and how they are treated and responded to as a result) than about what people are called.)

In my mind, "awareness" (if the concept of such a thing can even be salvaged) ought to be geared toward encouraging people to open their eyes to difference and acknowledge that every future worth building must be a more flexible and inclusive one.

Awareness should mean actually being aware that different people perceive, think, and function differently and that "displaying a behavior" (or not displaying a behavior) doesn't mean the same thing for every person.

Awareness should mean understanding that if a person seems to "fixate" on one subject, it doesn't mean they are "too lazy" to learn about anything else, or even that they are necessarily "missing out" in any way. (The complexity of existence goes "all the way down", as far as I can tell, and I'm guessing many people would be surprised at just how much content there is in even things that look "simple" on the surface.)

Awareness should mean acknowledging that some people perceive visual information, sound, and touch differently than you do, and that they might not be able to just "ignore" stimuli that you can.

And finally, awareness should mean an openness to the very existence of different kinds of people, rather than an assumption that we only need to be more aware of certain kinds of people so that such people can be more readily changed into other, more valued kinds of people (and bemoaned as "tragic" or "limited" if this doesn't turn out to be possible).

The Empathy Conundrum: Ethics, Emotion, and Autistic Cognition

Two Capacities, One Word?

The word "empathy" gets bandied about a lot these days in popular media concerning brain and behavior-related topics.

Specifically, I've noticed that articles about either autism or sociopathy and criminal behavior tend to discuss a supposed "lack of empathy" in autistics - and in the sorts of people who like to torture animals for fun.

It is of great concern to me that the notion of particular kinds of people lacking empathy is so often brought up in a muddled, careless manner. I realize that most people writing about empathy and "mirror neurons" these days probably don't mean any harm by it, but that doesn't make the potential consequences of their writing any less worth pointing out and discussing critically.

First of all, I have noticed that when most people use the word empathy, they're actually referring to one of two very different things:

(1) The capacity of a person to "read" culture-typical social signals, respond in expected/predictable ways to common situations and experiences, and engage in a certain amount of "social learning" via particular kinds of imitation.

(2) The capacity of a person to feel emotions "on behalf" of others, to care about others, and to feel compelled toward ethical behavior.

I hardly think the two capacities decribed in (1) and (2) above could really be confused for each other, or assumed to mean the exact same thing, by anyone putting any actual thought into their discussion of what "empathy" means. And yet, it is not unusual to find people switching from talking about capacity (1) to talking about capacity (2) without any explicit indication that they are doing so, or any apparent understanding of what it might mean to conflate the two.

For a particularly egregious example of this, consider the Empathy Quotient quiz. Based on some of the theories and writings of British autism researcher Simon Baron-Cohen (not to be confused with his cousin, comedic actor Sacha Baron-Cohen), the Empathy Quotient quiz includes such items as:

- I can easily tell if someone else wants to enter a conversation.

- I am very blunt, which some people take to be rudeness, even though this is unintentional.

- I can pick up quickly if someone says one thing but means another.

Notice that the three quiz items above all pertain to interpretation (1) of what "empathy" means.

Rather than having anything to do with whether a person actually cares about other people (or animals), these items all have to do with how someone might "operate" in the social arena. These items may indeed suggest areas where someone might experience social difficulty as a result of not functioning, thinking, or perceiving in a culture-typical manner, but they don't say anything about a person's capacity to respond emotionally to situations affecting other people. Nor do they say anything about a person's capacity to behave ethically or hold and adhere to principles.

Now, consider the next example set of items from the quiz:

- It upsets me to see an animal in pain.

- Seeing people cry doesn't really upset me.

- I get upset if I see people suffering on news programmes.

These items, in contrast to the previous three, are directly concerned with a person's internal, affective response to the suffering of others. Not with how the person "comes across" socially, or how good the person is at quickly noticing and responding to indirect communication and/or typical social cues. And that's a very important distinction to be aware of.

But the "empathy quotient" quiz doesn't make this distinction. Nor, apparently, do many people who write articles about autism in the popular press.

The Empathy Quotient quiz designates scores of 0 - 32 as "low", and suggests that "most people with Asperger Syndrome or high-functioning autism score about 20".

I took this quiz this evening myself, and scored 18. So, while I don't put any actual stock in this quiz as a diagnostic instrument (its wording is extremely ambiguous in some places, among other problems), I certainly can't deny that my score does correlate with what my ASD diagnosis would supposedly predict.

But what does that actually mean, if anything?

My Own "Empathic Deficit"

I initially encountered the concept of "theory of mind" (and how it supposedly pertains to empathy) back when I was in the midst of the evaluation of my developmental history and cognitive/behavioral style that ended up leading to my diagnosis. At first, the idea that I might have "empathic difficulties" seemed to make sense and explain a lot of things about my pervasive and ongoing social difficulties.

After all:

- I have been called "insensitive" and "oblivious to other people" on numerous occasions.

- I was reprimanded at the first two jobs I worked at for such things as "sweeping the floor too much" (meaning I was focusing too intently on cleaning and not intently enough on greeting customers), and coming across as aloof or even rude.

- I have trouble spontaneously answering questions like "How are you?" (I actually have the comic below posted outside my cubicle at work).


- I have often been accused of missing the "emotional tone" of a conversation or situation -- e.g., my third grade teacher was once lecturing me about something (I can't remember what), and at one point she used a funny word, at which point I burst into laughter. I was then made to write "I will not laugh while I am being reprimanded" on a piece of paper multiple times.

- I have always found most social situations to be overwhelming and confusing (particularly if there are large groups involved).

- I have trouble keeping track of which people of my acquaintance know which pieces of information, and sometimes I get confused at the fact that things that seem "obvious" to me are not, in fact, "common knowledge".

- I also remember one of my childhood nicknames being "Miss Contrary", as I often appeared to "insist" on doing everything in my own way as opposed to a way I was shown or told -- and while I will certainly admit to stubbornness as a character trait (it runs in the family), the fact of the matter is that I often can't match people's movements in learning to perform tasks. (I'm a lot better at figuring out how to operate devices and accomplish physical tasks by studying and experimenting with the relevant objects myself than by watching other people performing the tasks and copying their movements, and I often find that the presence of other people when I'm trying to figure out how to do something hurts more than it helps.)

In light of all that, it seemed perfectly logical for me to figure that the popular literature conflating autistic cognition with a "lack of empathy" made sense. Until I was identified as being on the autistic spectrum, I'd tended to assume that I was "normal" and that other people were all weird and unpredictable. But learning that I might have "empathy deficits" turned the tables on that assumption, and for a while I found the notion that my social difficulties were due to such deficits quite useful as an explanatory tool.

Carelessness and Confusion

But as I read more (in seeking to learn how to better function in the world given the particulars of my neurology), I started to realize that empathy was a massively important and significant topic in the estimation of numerous scientists and laypeople. Empathy, according to many, is a key part of what makes humans "human" -- or perhaps more generally, what makes any sentient creature worthy and capable of membership in civilization.

So while I was (and am) perfectly okay with acknowledging my difficulties, I found myself becoming more and more distressed at how autistics were described in the media, particularly with regard to how tragic and horrible (or "bad for society") our existence was supposed to be, largely on account of our supposed empathic failures.

What's more, I observed that in quite a few of the discussions of autism I came across, "having a conscience" was being conflated or confused with "demonstrating and rapidly being able to interpret typical social signals".

I don't think this is the kind of linguistic carelessness anyone can afford to just ignore or brush aside, regardless of how naive it might be. Ignorance, and the perpetuation of misconceptions about what it is actually like to be and experience the world as a certain kind of person, can have real and serious consequences for people who actually happen to be the kind of person in question.

My concern is that if autistic people are culturally defined as "lacking empathy", and if people aren't exceedingly careful to define their terms (which they often aren't), and if "empathy" is widely considered to be a precursor to conscience, then we're basically being written off straight from the get-go.

And when people are written off, there's very little motivation to think about extending basic human rights to them, let alone (gasp) learning to better accommodate and integrate different sorts of people into society.

An example of what I mean by the confusion/conflation of "typical social skills" with "emotional response" can be found in the words of a commenter on a recent BoingBoing post referring to the Online Movement for autistics' rights. This commenter states that:

Mirror neurons allow us to literally feel someone else's pain. When we see someone hurt themselves, or see someone who is clearly emotionally upset, mirror neurons are triggered in the observer's mind that are analogous to the other individual's mental process.

This also allows us to learn through observation. You see someone going through a step-by-step process, and mirror neurons allow us to learn by having analogous neurons triggered.

But since autistics don't have the same mirror neural activity, they don't learn the same way, and they also don't have the same empathetic response.

The commenter quoted above is making what I see as the essential mistake in his appraisal of what it means to be autistic. He takes a particular mechanism by which learning may take place, notes that this mechanism may be difficult for (or inaccessible to) autistics, and jumps seamlessly to the conclusion that this has something to do with "being able to feel someone else's pain".

And it is my assertion that this assertion is invalid and scientifically untenable.

Different, Not Ethically Bankrupt!

A lot of discussions about autism, regardless of where they occur, seem to get stuck on the central dilemma of what autism actually is -- that is, what it means for a person to be autistic.

Do you go strictly by the DSM-IV definition? The ICD-10? What about all those people claiming that autism is caused by vaccines, or television, or French fries, or "yeast overgrowth"? Is autism a "set of behaviors" that, if a person can suppress them, will indicate that the person has been "cured" (this is certainly what the behaviorists would have you believe)? Are autism and Asperger's the same thing, or two different things? Does Asperger's even exist? Is autism more easily identified according to a person's weaknesses, or according to a person's strengths?

Truly, the sheer range of questions on this subject boggles the mind. I can certainly see how people end up getting confused, and believe me, I was pretty confused myself about the whole thing when I first started learning about what it meant for a person to be autistic. But over time I've come to settle on something of a cogent idea in this regard. And that idea is the fact that as near as I can tell, autism isn't so much about what a person does as about how a person does it.

It is quite apparent that autistics do tend to learn, think, and perceive differently than nonautistics do. There's good solid research backing this stuff up in the cognitive science arena, and I would dearly love to see it get more attention, seeing as the field of autism research has too long been dominated by the ghosts of radical behaviorism and psychoanalysis (and has of late been further polluted by opportunistic quackery, antivaccination pseudoscience, and homeopathic nincompoopery).

I agree very much with researcher Michelle Dawson (who works with the University of Montreal) who frequently and firmly asserts that autistics deserve the same high standards of science and ethics as nonautistic people can generally expect to enjoy. And this, to me, means that "deficit model" biases have no place in serious research. The best ways to help autistics -- who can certainly sometimes have extreme difficulties with daily living and other skills -- are much more likely to be found if corners aren't cut scientifically or ethically, and if the focus is on understanding the autistic brain as opposed to merely "remediating" it or trying to "prevent" it.

This is not an attempt to be cute. This is not an attempt to "romanticize" autism or the lives of the many individuals who fight in vain to find a place, a community, a school, etc., that can balance their needs with the needs of the cognitive/perceptual/functional majority. This is not "political correctness".

This is, frankly, concern. And a little bit of desperation, perhaps, as the assumptions frequently made about the capacities (for thought, for feeling, for happiness, for a worthwhile existence) of autistic people appear to run so deep at times that I can scarcely imagine how we as a culture might effectively root them out.

Empathy is only one area where particularly damaging assumptions tend to get made. There are many, many more, and I don't know if I could ever effectively cover them all in the depth they require. But empathy is an important subject -- an important word -- to hash through and define and consider in the relevant contexts.

The Bottom Line

I'm almost beginning to suspect that some folks might actually believe that in order to have an internal, affective response to another person's suffering or delight, and in order to engage in ethical behavior (which should never be confused with, or conflated with, "nice" behavior), a person must also consistently display the ability to read and respond to typical social cues in expected ways very fast in real-time.

And if anyone gets anything at all out of reading this, I would hope that it's some degree of reassurance that this is not, in fact, the case.

Autism is not a "personality type", and it is certainly not just another word for "being a jerk". It is a neurodevelopmental difference that, according to the best science I can find, primarily affects the cognition and processing of low-level information. This difference in turn can influence what skills and types of interests a person might end up having, and it may make a person aware of different details in the environment than the nonautistic person would notice, and it can also contribute to documented patterns of strength and weakness.

It can mean we use body language differently, that we don't make typical eye contact, and that we push the boundaries of social norms as far as how we express happiness, distress, or other emotions. It can mean we use and relate to language in an idiosyncratic or peculiar-seeming manner. And so on, and so forth.

Consequently, the autistic person can sometimes appear aloof, uninterested in social interaction (and may in fact be uninterested in culture-typical dominant forms of social interplay), unpredictable, "difficult", insensitive, or any of a number of other adjectives that skirt around the notion of "empathic deficit".

But this does not mean that we hate people. It does not mean we see people as disposable objects, or that we are somehow like sociopaths.

I'm not saying all autistics are going to seem "nice" or "sensitive" once you get to know us -- I can be a pretty harsh character myself on occasion, particularly if I encounter people whining about how all the evil "disability extremists" and "political correctness zealots" are conspiring to take over the world and drain Your Tax Dollars(TM) so they can sit around all day watching sitcoms and producing hordes of deaf, autistic, and possibly even gay babies. If you insist on expressing racist, pseudoscientific, sexist, homophobic, or ableist attitudes, you will raise my ire, and the results will not be cute.

I may not be able to tell when someone is "mildly irritated" or "subtly upset" easily (particularly if I'm trying to keep track of a conversation I'm having in real-time with that person), but if someone is crying or obviously in pain, I am powerfully (sometimes overwhelmingly) affected by it.

Heck, I can't even stand to see robots (fictional or real) being smashed or otherwise abused. I used to hide my eyes as a kid while watching Short Circuit 2 during the scene where the robotic protagonist is beaten by a group of thugs (which you can actually watch here if you're curious, but be warned that it is extremely upsetting and may very well make you cry).

So, I don't personally have any doubt that I at least have whatever basic circuitry is necessary for a person to care about other beings. I don't have any inclination to believe that autistic neurology, regardless of whether you want to talk about "Asperger's"-labeled people, or "PDD"-labeled people, or those with labels of "Autistic Disorder", in any way, shape, or form negates a person's capacity for care, for love, or for ethics. And I firmly believe that if the future is to be an open, welcoming place for all the various forms that may come about due to choice or accident or experiment, it is vital not to confuse charisma with conscience.

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Links: Autistics (and Family Members of Autistics) On Empathy

- Bev at Asperger Square 8 describes her experiences in Empathy Class, and illustrates a few scenarios that aren't necessarily what they might seem.

- Autistic self-advocate Joel Smith discusses how it is certainly possible to be autistic and a caring person at the same time.

- ABFH at Whose Planet Is It Anyway? offers an "alternative" version of the Empathy Quotient -- one might perhaps say a revised version!

- Autistic self-advocate Jim Sinclair offers Thoughts About Empathy.

- Amanda Baggs writes quite a lot worth reading here regarding bullying, exclusion, and the "we're not like those people!" phenomenon that underlies so much of the actually pernicious empathic failure that is not constrained to any individual or named pathology, but endemic throughout society in certain manifestations.

- Temple Grandin, an author and professor of animal science who also happens to be autistic, notes an interview on NPR how she is "frustrated by the inability of normal [nonautistic] people to have sensory empathy. They can't seem to acknowledge these different realities because they're so far away from their own experiences."

- Special education teacher (and parent to autistic son) Mike Stanton discusses a pair of autistic artists and muses, "Why should there be a connection between [neurotypical] social cognition and moral values?"

- Lisa at Life In The New Republic describes how her 12-year-old autistic son, Brendan, upon realizing that the stuffed animal he'd just picked up did not light up when squeezed (as it was advertised to do), asserted that he did not want to return the toy because "...he was worried about what would happen to it if he took it back, that no-one would love it."

(NOTE: Links have been listed here to provide a range of perspectives on empathy as it pertains to autism and human morality/conscience/cognition in general. Please note that the opinions expressed by the individuals linked are theirs alone, and my listing them here does not imply that I always agree with all these people on everything. I probably agree with many of them on a lot of things, but there is no person I agree with 100% of the time).

What Needs To Be Said

There's a lot that needs to be said (and realized, and done differently) with regard to the ways different kinds of people are thought of, treated, and considered from an ethical standpoint.

A lot of it is very difficult to say, though, because it doesn't tend to fit into some tidy, fully self-consistent ideological framework.

And there's this weird bias I've noticed that seems to cause lots of really important points to go ignored (or even blatantly disregarded) because they can't easily be shoved into this-ism or that-ism (or because they seem to superficially contradict something "nobody would argue with", even when the points being made are a lot more nuanced than they might seem at first).

Dale Carrico puts some of what needs to be said very well in a recent post (emphasis mine):

It is not only those who go so far as to actively advocate involuntary modification who are typically described as eugenicist in my understanding. There are disciplinary pressures beneath the threshold of conspicuous coercion that will yield eugenic effects just as surely (and more efficaciously) than blatant force will do. Certainly programs of involuntary medical intervention constitute the most hideous and heartbreaking end of the eugenicist spectrum, but one can easily observe comparable homogenizing and restrictive effects arising from popular misinformation, from social stigma, from mass mediated promulgation of norms, from uncritical and inertial workings of orthodox institutional healthcare mechanisms, and so on...

Not everybody needs, as some "transhumanists" [and, I might add, others in general who claim no allegiances to any particular subculture, but whose views are essentially mainstream] apparently seem to do, to literally see a Nazi cracking a whip in the service of genocide before they will grant that even now society is conspiring unnecessarily and at great human cost to cast certain perfectly liveable and dignified and legible human capacities, morphologies, and lifeways as less-than-human, as offenses to humanity demanding "remedy" whatever those who incarnate them might have to say in the matter, and so on.

What he said.

I think a lot of people ignore the fact that the entire culture that would necessarily have to spring up in the service of enforcing "compassionate" involuntary modification would, in and of itself, comprise a terrible abuse racket. In some ways, such a culture already exists, and every time someone tries to make a claim that yet another neutral, non-deadly variation or state of being ought to be pathologized, this culture is bolstered rather than weakened.

So, sorry to rain on your utility function, but I'll have no hand in promoting the kind of culture that would have more and more people locked up for not "curing" their children of nonfatal variations, and that would perpetuate the revocation and diminishment of assistive services on the basis of a distorted, backward belief that these somehow drain the coffers of "deserving" normals.

The reality encompassing all sentient persons is huge, messy, complicated, beautiful, and yes, dangerous. Certainly, this reality could be improved in some respects, and I'm all for doing so when doing so allows more people to live outside the shadow of painful, deadly conditions (cancer, poverty, etc.). But beware the trap of feeling like good intentions alone are enough to justify whatever you do. And also beware the trap of trying to frame everything that makes you vaguely uncomfortable as an "emergency". There are enough real, deadly, actual emergencies in the world already. And the existence of a diverse range of live and conscious animals is not one of them.

An Advocacy Success: NYU Retracts "Ransom Notes" Campaign

A lot of people have written lately about the New York University Child Study Center's "Ransom Notes" billboard and ad campaign.

I first heard about this campaign a few weeks ago, and honestly, I was at something of a loss for words (hence, my not discussing it publicly until now). The images and messages associated with the campaign were apparently intended to "raise awareness" of childhood mental, psychological, and neurological issues (all carelessly lumped under the category of "psychiatric disorders", but anyway), including autism and Asperger's. Billboards were plastered all over New York, showing stark pictures of several different fake "ransom notes", one for each of the "featured" conditions -- with the emotional hook being the idea that the condition had kidnapped a child and taken him or her "hostage".

Now, believe me, I understand that when someone (child or adult) is having issues or struggling with something, it's good to see that they get whatever help they need. But merely intending to be helpful doesn't mean that whatever a person (or organization) does in the interest of fulfilling their intentions must be accepted uncritically. If you really want to help som