Reports from a Resident Alien

Thoughts from the Food Pantry

Wed, 16 Dec 2009 04:54:44 GMT

As some of you who've been following my blog might remember, I had a serious stress problem right around the middle of September, which led to my dropping all but one class and wishing I could sue my GP for caring more about my weight than the fact that I'd developed an irregular heartbeat (best guess? yes, stress-related). After three or four weeks, I had recovered pretty well; after five weeks, I was going stir-crazy having not much to do. There is something about me that is always, always aware that my time is limited; and I hate wasting any of it.

By mid-October, I found myself going to the local food pantry. The last time I'd been there was between the endless succession of jobs won and lost, when I couldn't pinch another penny and the food money ran low. This time I was there because I wanted to volunteer. I'd always meant to do so, because I don't like taking handouts; but the food pantry is open during the day and I usually had classes then, so I was limited to the church library and the cat shelter. At first, I volunteered at the pantry for three half-days a week; but eventually I found the stress level creeping back up, and reduced to two half-days. (Kind of pitiful, huh, when a person can't even work three half-day shifts a week? But there it is. Maybe one of these days I will learn to accept that I am actually not some sort of lazy bum who can't be bothered to put in a good day's work... but to be honest, I am still telling myself exactly that, even though when I try, things get scattered and I tend to lose half my brain along the way. Granted, the job does trigger some of the easiest sources of overload; other places aren' t as intense.)

Officially, my job is to listen to voice mail, take down relevant details, call the person back, get more details, and tell them when the office is open. The conversations are very formulaic, so I have little trouble with them, but the usual auditory-processing difficulty with phones does mean I have to concentrate very hard. I've learned to mentally "record" what was said, and play it over a few times until I can translate it into text. It's better than face-to-face, though.

There's a lot of chaos at the pantry that I wish I could get my hands on and re-organize. For one thing, the files are all still kept on paper--lots of index cards with names, addresses, phone numbers, and dates. Currently, we keep the records up to date by first having the client call the food pantry's voice mail number, then calling the client back and getting their information correct on the intake form and perhaps correcting the information on their file card (which is handwritten, often misfiled or illegible); then they have to come in and fill out yet another form with basically the same information on it. What's more, that same information has to be confirmed at every monthly visit (people are allowed to come in once a month; most don't come in that often, though some do). If we had all this on computer, we wouldn't have to fill out two forms every visit; we'd just have to update the relevant information on the computer and have them sign a simple statement that they're below the income limit (twice the federal poverty line). But no. That would be too easy.

These people wait in line sometimes for three hours to come in; and the process for getting them through the pantry is painfully slow. They fill out all those forms while actually sitting at the desk with our one front desk attendant watching them. (Lately I've been handing them the forms to fill out while they're sitting waiting in the hall. Apparently this is revolutionary.)

Another place where the process is really inefficient is that, after the client fills out the forms and receives the basic groceries that everybody gets, they are directed to a second person, who helps them choose eight to ten items from a group of shelves. And, while they stand there taking their time choosing, the front desk person (who now has nothing to do) sits there and doesn't call in the next person until the first person is completely done choosing their groceries, which can take five minutes or more. The reasoning behind this completely baffles me. I know it has nothing to do with privacy because these people have already been sitting in the hall for a couple of hours, where everyone who walks by sees them. Have they never heard of the concept of an assembly line? Pass the first person on to the food shelves and start processing the next!

If I'd designed this system, there would be two people manning the front desk, helping two people at a time, and no voice-mail rigmarole at all. We'd use the computer that's sitting right there on the desk, instead of the huge file of illegible, misalphebetized cards. And, while it's nice to be able to choose some of your own groceries, it's nicer not to sit there for three hours, so I'd cut those down to three or four. It's really not rocket science. I'm almost certain I could cut down the average appointment from something like fifteen minutes to something like five--confirm your information, pick up your groceries, and go.

Apparently, whoever did design the system was thinking, "But these are poor people! They have nothing better to do but stand in line!"

Right. Because they couldn't possibly want to be in the job office down the hall looking for employment, or home putting up their feet after a day as a Wal-Mart greeter, or taking care of their six kids they're inexplicably trying to feed on $57 in food stamps.

I looked up my own card from the food pantry's files. It shows I've been there seven times. My experience, apparently, was typical; most clients don't come back year after year. They tend to come in for a few months, when times are hard, and then not need the food pantry anymore.

A lot of people seem to think that those who ask for "handouts" are invariably deadbeats; but I've seen very little of that. Among those that consistently use the food pantry, there are a lot of retired people, whose social security checks don't cover everything they need. There's a fairly large number of disabled people, as well, especially those whose disabilities come in the form of chronic illness. And then there are the people who are working, but whose jobs don't pay enough to feed their families--especially those in the awkward spot of earning too much to get food stamps but not enough to pay for food and rent simultaneously. Those are the typical long-term clients.

Short-term, you'll see homeless people, women from the battered women's shelter, and the recently unemployed. That last group is, not surprisingly, bigger than it ever was before. Maybe that's part of the reason for the chaos; there are just more people coming in than the food pantry has been used to helping, and the food pantry (being run by traditionalists, and with mostly retired people for volunteers) simply hasn't had the time to adjust. When you've been giving out twenty orders of groceries per day, and suddenly get asked to give out fifty or sixty, I guess it can get understandably difficult. (That doesn't mean I like the chaos any more, though, however good an excuse there is for it.)

Those who actually take advantage of the food pantry probably represent 1% or less of the people who come in. Families who report that they get $300 or more in food stamps for two adults and a child, but come in for groceries anyway... Yeah, I've got difficulty believing they are actually in real need. There are a few families where just about everybody comes in--Mom, Dad and his new girlfriend, their six grown kids living scattered around town, generally taking care of kids of their own--where you know people were simply raised in the welfare system. But these families are actually very few and far between. The average client, like I said, is a person who's going through hard times, and, once he gets out of his sticky situtation, won't need to come back.

The people assembling the actual bags of groceries are a bunch of kids in a federal "jobs for youngsters" program--ages sixteen to twenty-four, assigned to the food pantry. They spend a lot of time being similarly inefficient; but I can't blame them, since there are three of them hired to do a job that one person can do easily (I know; I've done said job by myself several times). Maybe I have an advantage over the average person when it comes to figuring out efficiency, though, because I have to sit back and plan the way to do all sorts of things, from taking showers to cleaning rooms; because if I don't, I get confused midway through and completely lose track. Instead of just going and doing it, planning on the fly like most people do, I look at the situation as a sort of theoretical problem, all the parts of the task like tetris pieces in my head, fitting them together into a useful arrangement. If you think about things before you do them, you can generally see where the procedure could be changed to make things easier. Most people don't seem to do that because they've never had problems planning things on the fly, because they can multi-task whenever they like, instead of having to plan things out beforehand like I do.

It's annoying, though, because I have been trying to be friendly to everybody; but I still can't recognize anybody. The volunteers tend to come in once or twice a month (apparently I am odd for coming in twice a week); so I have only a day's exposure to them until they come back in two or four weeks. I haven't learned to recognize the youngsters filling the grocery bags, either; but we are now in that awkward stage where I haven't memorized them, but they memorized me long ago. So I have to try to guess who is in what group, whether they are a client or a worker or a volunteer, and respond appropriately. It's a bit confusing.

I try to keep to myself. Apparently this has been unsuccessful, because one boy told me he liked me, and I responded that I already had a boyfriend because I didn't want to have a half-hour discussion about what "I'm asexual" means (yes, yes, I know, I should be more forthright about it... there's little enough awareness as-is... mea culpa, really). And then today, another boy came up to me and asked whether I had been talking about people behind their backs. I was puzzled and confused, because not only don't I talk about people behind their backs when I can't even recognize who is who yet, I don't talk much about people at all. So I told him I was puzzled and confused, and that I don't talk about people behind their backs, and he went away. I still have no clue what that was all about.

At least I can recognize the lady who runs the food pantry. She has a distinctive pattern of wrinkles on her neck, but I know better than to comment about it because old people are inexplicably ashamed of their wrinkles. I'm just thanking my lucky stars that older people look different from each other, instead of practically interchangeable like younger people do. She is probably quite old, because she has been running the food pantry for a while, and was retired already when she started it. Now the problem is that she is getting older and can't work full days anymore; so the only people who are left are volunteers, and very few volunteers come often enough to really become veterans at it. Lots of people don't know the answers to questions clients ask; and sometimes clients and their questions fall through the cracks between shifts. There's no good way for people to communicate, and it's frustrating. People just hope they mention the right things to the right person. I have given up on mentioning anything and taken to writing notes.

So I suppose you would think that with all this complaining I am doing, I don't like working at the food pantry. But that's not true; I actually like it, most of the time. The thing about giving food to people is that even when people are looking for handouts, all you're handing them is food. Not a free ride, just a full stomach. And anyway, how are you supposed to find a job or take care of your kids or survive your shift at Wal-Mart if you're either dizzy from not enough food, or sick because you could only afford cheap junk?

I don't know why more college students don't do things like this. Most people have families and jobs and spend all their time on those things; but college students usually don't. I think maybe they just don't know how to go about it. My school actually has a class to teach people how to do volunteer work, including the basics of how to start a non-profit organization.

Times are hard; and when that happens, people help each other out. We are too big a town here to really consider each other neighbors, but "fellow human being" is good enough, especially if you study philosophy. And anyway, it's good for people to do something about the general crappiness of the world. We don't feel as helpless that way.

Killing

Sat, 12 Dec 2009 01:12:35 GMT

Last summer, I participated in an internship at the pharm/tox department at my university; and when the summer ended, I was asked to stay on for a few more months. One of the projects going on in my lab is trying to determine whether there is any connection between circadian rhythm and diabetes. Today, when I went to the lab, one of the experiments was ending for the forty-two mice in three groups: One, a control group; another, given fructose water during the night (when mice are active); and a third, given fructose water during the day (when mice are normally asleep). Mice on a high-sugar diet are good models for diabetes.

Naturally, mice like sugar water (don't we all?) and will disrupt their usual sleep-wake cycle to access it, which means they're eating when they would normally be asleep, which is of course the point of the project. What, exactly, happens when mice get high-sugar midnight (midday?) snacks?

At the end of almost every experiment, the mice are euthanized, and their tissues collected. It's amazing how much data you can get from a single mouse. I've spent hours on a fifteen-minute recording of mouse EKG (the electrical activity in the heart), or counting the bright pixels (by computer, thank goodness) in a photograph taken of a slide with a mouse heart section, stained for various substances of interest. I've done a lot of statistical work, too, which I find amusing because I've taken exactly one undergraduate statistics class and they still trust me with it (!). I've dug through hours or days of recordings taken with implanted telemetry equipment--tiny transmitters surgically implanted in a lab mouse, which can transmit things like heart rate, body temperature, movements, and blood pressure to a computer across the room.

It's odd, looking at a single mouse, just how much information you can get from such a tiny creature; while the mouse, of course, is totally oblivious to it all.

When I first was told we were working with animal research, I was also given a course in how to humanely handle lab animals. Every experiment has to be written down exactly, in advance, with everything that is done to the animals, every drug, every surgery (if any), how they'll be housed, etc., and has to be reviewed by a committee which checks that we're using the fewest animals possible with the least distress possible; then we're checked, periodically, to be sure we're following the protocol. Any changes have to be approved; and the animals are regularly checked by the institutional vet. Apparently, you can get in really big trouble for deviating from the protocol, and can even lose your grant or get kicked off the program. To me--animal lover here!--that was really reassuring. I'm aware of the necessity for animals in research; there are things you can do with living creatures that you'll never manage with tissue cultures. But that doesn't mean I can't care about the animals' welfare.

So... today, the experiment ended, and forty-one mice had to be killed. (Forty-two is around the minimum necessary to detect an effect of the size we were expecting; one mouse died before the end of the experiment, not surprisingly since mice are not so long-lived, so there were forty-one left.) We do call it "killing"--in the protocol, of course, it's "euthanasia", but I have a feeling these scientific types don't like euphemisms any more than I do. It's the second time I've done tissue collection; and I didn't like it this time any more than I did the last. Nobody else did, either. It's a tiring, picky job; and while nobody bonds with lab mice, nobody likes killing them. You get used to it, sure; but if you ever like it, I question your sanity.

The whole operation was set up in assembly-line fashion, eight of us in a small room with stainless-steel counters and a lot of equipment. The mice, still in their cages, were brought on carts; and another cart of microcentrifuge tubes waited for the blood and tissues.

Like many labs, we kill our mice by decapitation. The apparatus looks much like what you'd expect, a V-shaped guillotine; the operator simply takes the mouse by the scruff of the neck and presses the lever to remove the head at the base of the skull. For a mouse, I cannot imagine this causes much pain (a great deal less, I would suspect, than my cats inflict on the mice they catch). As I've heard it, a human has maybe ten seconds of consciousness after the heart is no longer pumping blood to the brain; for a mouse, with a much faster heartbeat (600-700 beats per minute, as opposed to 70), the time to death is less than a second. After the mouse is dead, the body is passed down the line, where it is snipped open with scissors, high-school frog-dissection fashion, and the various organs are removed, ready for analysis. Some parts are fixed in formaldehyde, others, frozen in dry ice. The blood is put into tubes prepared with heparin (to stop coagulation).

I had the job of weighing hearts and kidneys, recording the weights on a clipboard. With mice, everything is tiny; and everything has to be done gently. The hearts, submerged in a buffer solution to stop the tissue damage, still beat after being taken from the body (the heart has its own electrical system, and will beat for some time after the brain is dead). The scale I was using measures weights to a thousandth of a gram; most mouse hearts weigh about .15 grams, and the scale has to be so sensitive that breathing on it can change the measurement.

A mouse heart is maybe the size of a small pea, deep red in color. It's too small to see details without a magnifying glass; the ends of the arteries and veins still attached look like bits of string. The heart has to be picked up with tweezers because clumsy human fingers are simply too big. Mouse kidneys are the size of kidney beans, and look exactly like kidney beans; if you squint at a bisected kidney, you can just barely see the structures. The brains are white and wrinkled, but look very simple compared to the human brain (which I have also had the privilege of studying). When the organs are sectioned for staining, they should be whole and undamaged; having worked with organs that weren't whole and undamaged, I am always a little paranoid of causing damage. Every sample gets its own microcentrifuge tube, and each tube gets its own label.

To keep ourselves from accidentally skewing the experiment, we kill the mice in random order. My list shows only the mouse ID; never the group the mouse belongs to. It's important not to know which group the mouse belongs to simply because, if you knew, you might subconsciously affect the results. Your own brain can really play tricks on you if you aren't careful.

Killing forty-one mice takes hours, even with eight people to help. The small room gets uncomfortably warm with so many people in it; and we are in protective lab coats, which makes it even warmer. The room smells strongly of mouse, with an undertone of blood. Standing up for that long without walking around makes our legs tired. We don't talk much; most of the conversation consists of things like, "Thirty-two. Right kidney," and, "Where's the PBS?" and, "Number sixteen. You guys ready?" The biohazard sharps box and the bag for everything else fill up as we work through the mice. At least we are only in a biosafety level 2 lab; it would be much worse if we had to do all this in more than just the basic protective gear we're wearing.

In the end, I ended up staying late to finish helping one of the grad students centrifuge the blood and dole out plasma into more little tubes, ready for testing. Maybe this batch of mice will tell us something interesting; with so many people who have diabetes and so many scientists studying it, contributing our little part to the body of human knowledge may mean that someone out there will arrive at a breakthrough that much sooner. But I've done this only twice so far, and while it's fascinating to see the inside of a mouse, right now I wouldn't mind not doing it again for a good long while.

Baby Expectations

Sun, 06 Dec 2009 17:35:27 GMT

As many Aspies are wont to do, I took a walk through the toy department of Wal-Mart the other day, and I noticed something interesting in the doll aisle.

Your "Baby Alive" Doll loves to be with you!... Come close, and watch me wiggle and coo! I say "mama", too! I want to cuddle with you!

Baby Born. She babbles. She baby talks. She gives kisses! Baby Born loves to give kisses to her mommy!

Little Mommy "Moments & Milestones" is so sweet! Just like you!

So what do you see? Just sugary advertising for baby dolls? Look closer.

First, remember that this advertising isn't aimed at the little girls, who generally can't read yet; the dolls are being sold to the girls' parents. And what the advertising actually says is very, very interesting.

When baby-doll advertising doesn't stick to just describing the doll's features, it usually reflects the ideas that the general public seems to have about what raising a baby should ideally be like; and practically all of that is focused straight on what the baby will do for you. Yep, that's right--it's not focused nearly so much on your caring for the baby; it's focused on how the baby will (emotionally) care for you.

The perfect baby doll, apparently, smiles, cuddles, and kisses her parents. She loves her parents, fulfilling the parents' emotional needs. She makes her milestones, saying "mama" and "dada" and making you feel happy.

Here's what this advertising is saying:

A baby will make you feel happy, because the baby will love you.

I have never once seen, on the packaging of a baby doll, the word "responsibility" (or any of its analogues). I've never seen the idea that the parent-child relationship may not be perfect. Even in dolls that are supposed to get sick, there's a little medicine dropper included to make the doll magically all better, so you can go back to being loved. (This is why you give medicine to the doll, you see. The doll will love you if you do so.)

I'm not going to go writing angry letters to the baby-doll companies, of course. This isn't some sort of insidious plot to get parents to have these odd expectations of their babies; it's just a reflection of a general tendency: Parents put expectations on their children. Long before a baby is born, a parent has plan for the baby's future, a mental image of what the baby will be like, and expectations that their baby will bond with them in a certain way, act a certain way, and be, essentially, an extension of themselves. There is a baby-shaped hole in their ideas of the future; and if the baby isn't shaped exactly like the baby-shaped hole he's supposed to fit into, they get frustrated.

It's bad enough if Baby turns out to be interested in soccer instead of cooking, or prefers to study philosophy rather than go into Daddy's plumbing business. Families have been torn apart over things like that. And that's just neurotypical children.

What if, instead of babbling and cooing, Baby stares in fascination at the play of light on the dust motes in the air? What if, instead of kissing Mommy, Baby pulls back from the overwhelming touch and cries inconsolably? What if, instead of saying, "I love you, Mommy," Baby recites the full script of her favorite Sesame Street episodes?

If you're autistic, you know what it feels like when you are expecting one thing, and get another. You had a mental plan of the future; you thought it was stable; you thought you knew what to expect, and you were following along the plan. But suddenly, something changed. Something got canceled; something got moved; somebody stayed home sick; somebody forgot to tell you what was coming up. You feel like the floor's dropped out from under you, because now your plan is invalid, and people are trying to force you along the new, unpredictable path. You have no idea where it leads, you don't like it, and you're being asked to go along with it now, right away, without time to form a new plan of the new future. It's a horrible feeling, isn't it?

Well, we're not the only ones who have that feeling. Neurotypical parents do, too, when suddenly their babies don't fit into the baby-shaped hole in their plans of the future.

They're taught to believe that a child will complete them; that a child will be what they think it will be. Sure, maybe there'll be some annoyances; they'll lose sleep, have to attend PTA meetings, and be petrified when their teenage daughters start dating. But, all in all, parenthood will follow the script. "We just want," they say, "a healthy baby." But they want a lot more, and they don't even know it.

Most parents don't have the benefits of being autistic and having to practice dealing with unexpected situations every day. Some deal with it better than others; they realize that things are different, but can still be good. Some go into denial, trying to pretend that their baby fits the baby-shaped hole in their imaginations just fine. Some try to squish and squeeze their babies, and force them to fit. Some do all of the above, eventually arriving at acceptance.

The one factor that seems to be common to parents who accept that their child is not the child in their imaginations is the acceptance that their child is a separate individual. Certainly most parents would say, "Well, of course my child is a different person from me!"; but not all parents, deep down, understand it. The idea that their child makes his own decisions, has his own opinions, and feels things independently doesn't seem to sink in much of the time. It's as though the child were still connected to some sort of emotional umbilical cord, receiving all of his substance from his mother.

A baby is not simply a thing that loves you. A baby is a person. What a child does is not just a reflection of who you are. What he thinks isn't just an extension of yourself. I've seen it so many times, especially when the child is disabled: "Why is he doing this? What should I do so that he'll do this other thing?"--as though the child had no independent agency; as if his behavior were just the result of whatever treatments you stuffed into him!

It might be okay to sell a plastic doll by saying the doll will be what you want it to be; because, of course, a doll is what you want it to be. But flesh-and-blood babies are not dolls; they are people, with an independent existence and an independent mental universe from their parents. Maybe if we realized that, we'd stop trying to treat children, disabled or not, as though their futures could fit perfectly into our own ideas of what we think should happen.

The Normalization of Diagnosis

Thu, 03 Dec 2009 16:01:30 GMT

A note: When I mention mental illness, assume I am talking about it in the most general way: Any condition that can be diagnosed by a psychologist; psychological, cognitive, or neurological. It takes too long to write that phrase out every single time I mention it.

Lots of people are getting upset about the proliferation of psychiatric diagnosis. It seems like everybody's kid has ADHD, autism, or dyslexia; and everybody who hasn't got depression probably has an eating disorder, bipolar disorder, or generalized anxiety disorder. And with every new decade, a longer list of diagnoses makes it into the manuals, and more and more people are labeled with them.

But that's crazy, isn't it? Only crazy people get diagnosed with psychiatric and cognitive disorders! You have to be really, really off your rocker to deserve a psychiatric label... or do you?

Well, no. Not anymore.

Psychology is a new science. Oh, sure, we always knew something was different about some people, and the explanations ranged from demon-possession to sainthood, or just being a woman (seriously, the name for "hysteria" comes from an old word for "uterus"); but it hasn't been until recently that psychology was anything approaching a science. Even Freud worked with nothing but case studies. The first working psychiatric drug was Thorazine in 1950--before that, there weren't even any useful medications. Even today, when you read the journal articles that deal with psychology, the writers seem almost desperate to quantify their research; and an entire branch of psychology deals with psychological testing--finding ways to make the evaluation and diagnosis of a patient more concrete, instead of subjective.

We're going through a transition in the field of psychology. Older generations have the idea that being diagnosed with a psychiatric/neurological/cognitive condition means that you must have a severe condition; because in the past, those were all that were diagnosed.

But the new diagnoses, in many cases, aren't severe or obvious. To the older generations, and some members of the younger ones, this must be quite confusing; because if you don't let go of the idea that a person must be a raving lunatic to qualify for a diagnosis at all, then you will be quite surprised to see seemingly ordinary people with diagnostic labels.

The new labels come from three basic categories:
1. New disorders that have only now become recognized as a distinct group.
2. Recategorization from what used to be labeled a moral failing.
3. Less severe versions of things we already knew about.

The newly recognized disorders are easy enough to explain. With people formally studying psychology for a century or so, attempting to categorize and understand the variations of the human mind, it is only natural that many such variations will have been newly categorized. Among these are schizoaffective disorder (a name for what happens when mood disorder gets combined with schizophrenia), PTSD (first identified in veterans), and seasonal affective disorder (recently distinguished from depression for its strong circadian-rhythm conection). Autism is in this category too; it was differentiated from schizophrenia and recognized as a neurological disorder rather than a psychotic disorder. People with these disorders would, in the past, have been known to have "something wrong with them", but no particular name would have been found, and most likely, they wouldn't have seen a psychologist.

Recategorizing what has been thought to be a moral failing in the past, but turned out to be something completely different, caused more problems for the psychology profession. Now they were stepping on people's toes; folks could no longer see the person whom they thought to be annoying, stubborn, or depraved, and look down on him. The problem was, of course, that most of these diagnoses weren't moral failings at all--they were simply explained as such. In this category are things like ADHD, selective mutism (this even used to be called "elective mutism" because it was thought the child chose to be silent), gender identity disorder, and many of the disorders related to sex and sexuality. Borderline, avoidant, and narcissistic, and histrionic personality disorders go into this category, too, and so does premenstrual dysphoric disorder (also known as severe PMS). Even actual moral failings--which psychiatrists recognized as moral failings but insisted on categorizing anyhow--were added to the list, in the form of conduct disorder and antisocial personality disorder.

The last group, and the one which seems to cause the most argument, is the group of milder disorders just being described, and milder cases of known disorders being diagnosed. Dysthymia and cyclothemia are long-term, low-level forms of depression and bipolar disorder. Schizotypal and schizoid personality disorders may be (or may not be) mild versions of schizophrenia. Asperger's, of course, is a milder variant of autism.

Many diagnoses have simply been expanded to include not just the cases where they cause near-total disability, but the cases where they cause distress and/or mild to moderate dysfunction. Now you can be diagnosed with OCD even if you aren't closeted in your house and spending all your time counting things; you can be diagnosed if you simply spend a few hours before and after work on your rituals, still managing to raise a family and keep a job but giving up your free time. You don't have to be completely unable to interact with the world to be diagnosed with depression; you just have to be in significant distress, even if you can still push yourself to get through your day.

All three groups, I think, are legitimate reasons to introduce new diagnostic categories. Differentiating disorders from each other, when they fall into distinguishable groups, makes a great deal of sense for the purposes of treatment (I've argued that Autism and Asperger's do not in fact fall into distinguishable groups; there may be others like this, but most of the ones I know about are in fact different and do fall into recognizable groups--autism and schizophrenia, for example, are demonstrably different.) And now that we know more about many diagnostic categories, it's no longer logical to call them moral failings--especially since many people with these diagnoses can be shown to have tried for decades to "overcome" their own "moral failings", with little success until outside help, medication, or a helpful environment are present.

If you can't change it, no matter how hard you try, then it can't be a moral failing--"moral" implies you have a choice. (It is, however, a moral failing to refuse to get help when you know your condition is hurting someone else.) Psychology can help these individuals by teaching new strategies, finding useful medication, or providing useful accommodations. What good is it to simply berate these people for being somehow deficient, if such an approach has never done much good, while helping them learn what they need (organization lessons for an ADHD kid, for example) tends to be at least moderately successful? The only benefit I can see to it is that people like to feel superior to others. The recognition that what most people do easily is difficult or impossible for people with various psychological diagnoses forces a change in perspective; after all, if it's easy for you to organize your desk, but takes your ADHD child six hours and maximal effort to do, can you really look down on him for having a messy desk? Nope. The proper approach is to teach him how to organize a desk. Suddenly, the easy, acceptable target is lost. That upsets some people.

(A word about conduct disorder and antisocial personality disorder: I do believe that people diagnosed with these make their choices, and hurt people willingly. They are not excuses for any of their actions. However, they can benefit, if they choose to, from therapy, because there are peripheral issues that can be addressed to allow them to make better decisions: Namely, self-inhibition; decision-making; understanding of consequences.)

The milder disorders seem to cause the most contention because they fly in the face of a stereotype we seem to hold dear: Mental illness is severe. It's obvious. It's rare. And it can't happen to me, because I'm more sensible than that.

It's true that for a long time, we identified only severe mental illness as mental illness at all; and identified only severe cognitive and neurological disorders as disorders. Epilepsy was only diagnosed if you had grand mal seizures; autism was only diagnosed if you couldn't speak; depression was only diagnosed if you couldn't take care of yourself or tried to commit suicide. However, this is an incomplete view of mental illness. Mental illness isn't present or absent, either causing severe distress or not there at all. There are in-between gradations, in which a person has significant difficulty, but doesn't yet need constant supervision. Think of physical illness and disability: There are gradations there, too. The common cold is just as legitimate a medical diagnosis as pneumonia; an incomplete spinal cord injury causing weakness in the legs is just as real as a complete SCI which requires a ventilator and wheelchair. Why should mental, cognitive, and neurological diagnoses be different?

That mental illness must be obvious (or, at least, be dramatically non-obvious until someone snaps and murders someone) is also quite a false stereotype. It does not need to be obvious. Many medical diagnoses are not obvious. Notably, high blood pressure can cause absolutely no symptoms. Diabetes can be silent, in its early stages. Most cancers don't show themselves for quite a while. A person can go about his business quite happily while infected with HIV. The reason we diagnose these problems is that they will eventually cause trouble, if left alone; and so it is with many psychology diagnoses. Learning disabilities will eventually cause a child to fall behind in school. Depression can worsen. It makes sense to do something about these things while they're still small and minimally harmful. (However: It's important to remember that psychological treatments, including the various therapies, are NOT free of risks and side effects, and should be pursued carefully, as any treatment should be.)

The fact is that mental illness is not rare--no more rare, anyway, than physical illness. While you may never have a mental/cognitive/neurological condition that requires intensive support, odds are that you or someone in your family does have, or will in your/their lifetime have, a legitimate psychological diagnosis--a condition that causes significant distress or dysfunction. It probably won't be severe. You may just have a child who needs extra reading lessons thanks to dyslexia; or you may have nightmares and flashbacks after being mugged. You might find that your brain doesn't deal with winter unless you get enough light. You might have problems getting over the baby blues and need an antidepressant. It's about time we stopped ignoring this real human suffering. After all, we don't ignore sprained ankles or high blood pressure just because they're not medical emergencies that require an ambulance and an ICU bed, do we? We shouldn't ignore these less-severe psychological/neurological/cognitive problems, either.

The transition we as a society are going through in regards to psychology is an awkward one: At the same time as the stereotype is still, "Mental illness is severe, obvious, rare, and morally questionable," we're recognizing that psychological, congitive, and neurolgical conditions aren't rare at all. People diagnosed with anything at all immediately get the idea that because they have a psychological diagnosis, it must be stereotypically severe. Because it's not obvious, many people think it must be fake. And because many people still think that these conditions must somehow be your fault, the tendency of a community to support physically ill members, at least to some extent, is nearly or completely absent for those with a psychological diagnosis.

I've heard a lot of jabbering that we should stop diagnosing so much mental illness, and stick labels only on the people who are obviously crazy. But why? People with milder problems do experience distress; and they can benefit from help. That's the definition of a sitution in which a diagnosis is helpful. It doesn't make sense. Instead of going back to a century ago, when only the "really crazy" people got what passed for help, we should make it known that it actually isn't such a rare thing to have a psychological diagnosis. Remove the stigma, and people will be free to think of having a mental illness as a problem like any other--bothersome, painful, but not something that defines your existence and means your life is basically over.

We're just going to have to face it: We're all a little crazy, and we all have the potential to have problems with various kinds of craziness. We shouldn't exclude people who do; we shouldn't deny our own problems. And, for their part, the psychology profession needs to stop taking themselves so seriously, assuming they're the saviors of all the poor crazy people out there. After all, the psychologists are probably a little crazy, too.

He's a Jerk? Must be Asperger's

Wed, 25 Nov 2009 04:22:26 GMT

I've been seeing it said around the Internet, mostly on sites where most people know just enough about Asperger's to think there's nothing more to know about it, that Asperger's is an excuse to be mean to people, have no empathy, abuse others, and trample all over people's feelings, and then claim that you can't help it because you've got a disease. (These are almost always males they talk about. Apparently females don't get Asperger's.)

That this is a myth is obvious those of us who have interacted with people who actually have autism, at least if we haven't been so unlucky that our only such contact was with an autistic person who was deliberately and unrelatedly rude and obnoxious (well, it's not as though autistics can never be jerks at all).

Here's why it's a myth.

Positive social contact takes skill. You want to charm somebody? Figure out what they're feeling and how to make them feel better? Figure out how to get them to help you? How to amuse them? Well, you're going to need social skills. You'll need not just the charisma--trained or untrained--but also the ability to use it while having a conversation and at a speed that's fast enough to keep up with the other person's non-verbal and verbal communication.

However, negative social contact takes skill, too. Do you want to intimidate someone? Insult them where it hurts? Figure out what they're feeling, and how to use that to make them feel horrible? Seduce them into your car and murder them in your basement? You're still going to need social skills. My stepfather, for example, who is a textbook sociopath (and thankfully left the family several years ago), knows exactly how to "push people's buttons" to create a great deal of misery in the people around him, to intimidate people. When I lived at home, he was very perceptive that I was frightened of being worthless; so he called me worthless a great deal. When he wanted to be liked, he was. The neighbors thought he was a great guy, because he wanted them to think that. His social skills are highly refined; his morality is not.

Sure, you can accidentally say something that hurts someone. You can accidentally say something amusing that makes them laugh; you can accidentally say something that confuses them, frightens them, or comforts them. I've done all of those, purely accidentally. But, if you have clumsy, unpracticed social skills, you'll have just as much trouble intimidating people deliberately as you have trouble deliberately charming them.

I've been thinking about this, oddly enough, while leafing through my D&D sourcebooks and, amidst the nostalgia, coming on the section that described character attributes. Charisma is a stat applied to a character that describes how good he is at relating to others; and among the skills dependent on it are things that range all the way from Bluff (lying, disguising yourself, feinting in combat) to Diplomacy (everything from seducing the barwench to brokering a deal between two warring nations) to Intimidate (everything from getting information from a prisoner, to mugging somebody, to creating a Fear effect that causes them to shake in their boots or even outright flee).

A low-Charisma D&D character isn't just bad at the positive aspects of social interaction; he's bad at the negative aspects too. He can't get people to like him; but he also can't get people to fear him. Once you get into the single digits, he's little more than an unremarkable wallflower that constantly sticks his foot in his mouth, can't intimidate your average mouse, and usually insults himself by mistake when he tries to insult someone else. (I have, however, found it amusing to create a low-Charisma wizard who tags along, unnoticed and considered to be rather useless, until he breaks out the Time Stop...)

D&D has it right. Low charisma--low social skills--don't mean you love to insult people. Sure, you can decide to try to use your social skills to be a jerk; but you'll be an overall ineffective one, probably no worse than annoying, perhaps even amusing. If someone with AS wants to hurt someone else, sure, they can do it; but it isn't going to be very subtle and it's probably going to involve more than social skills. Someone with AS trying to insult someone else just tends to look clumsy and the whole thing tends to end badly for the originator of said clumsy insults. Make no mistake about it--if they're trying to be insulting, it's not a consequence of having Asperger's; it's simply a consequence of wanting to insult someone.

Autism only means low social skills; it doesn't dictate what you do with them. Someone with autism is as likely to accidentally insult themselves as they are to accidentally insult other people, and more likely than both to just say something that doesn't make much sense. Autism doesn't take away the choice of how to treat other people. There are autistic sociopaths and autistic altruists; but that has more to say about their character than about the fact that they happen to be autistic.

Of course, there's one benefit to positive social interaction that you can't get from negative social interaction: In positive social interaction, both parties are trying to meet in the middle. As both parties learn more about each other, the connection becomes stronger and deficits can be compensated for. Eventually, thanks to familiarity (and for autistic/autistic connections, thanks to a shared neurotype), information flows more freely, and some of the things that an NT could do with a perfect stranger become possible for an autistic person when he has come to know the other person well. Negative social relationships, unless they're very twisted ones, simply don't foster that sort of cooperation.

Good-bye to Asperger's

Wed, 11 Nov 2009 16:37:03 GMT

There’s a fairly arbitrary split between people diagnosed “Asperger” and high-functioning people diagnosed “Autism”. The big difference between these two categories is that the people with Asperger’s had speech before three (though it was probably unusual speech), and the people categorized Autism usually did not. In the HFA group, they almost universally catch on to speech by age five–after which they are, especially in the teen and adult years, functionally identical to Asperger’s.

The problem is that this difference in speech acquisition isn’t the only difference that you can find among people with HFA/Asperger’s. It’s just the only difference that people split the two groups apart by. There are other differences–significant ones–that do not fall along the lines of the HFA/Asperger’s split. For example, interest in socializing ranges from clumsy, insistent interaction to complete indifference within both categories. IQ ranges from borderline to genius in both groups. Adult prognosis ranges from “needs constant supervision” to “raising a family and holding a highly-paid job”. And while people diagnosed Autism tend to be more disabled on average, this could just be because stereotypes prompt Asperger’s as a diagnosis in an individual who fulfills Autism criteria–because the individual seems intelligent. (Asperger’s is stereotypically associated with intelligence.)

Asperger’s is obsolete as a diagnosis, and has been ever since we figured out that most people now diagnosed with Asperger’s are also diagnosable with DSM-IV Autistic Disorder–even more annoying because Autistic Disorder is supposed to take precedence. There’s no good reason to keep the label when it’s redundant and serves no purpose. The simpler the labeling system can be while keeping its meaning, the better.

It’s about time we got rid of the confusing Autism Spectrum, as it now is. When there’s enough diagnostic confusion that most people diagnosed Asperger’s could be diagnosed Autism, and when fully half the Pervasive Developmental Disorder diagnoses are PDD-NOS, something has to be done.

We’re just going to have to face it: Autism is a diagnosis with huge variations from individual to individual, and while knowing “autism” about somebody might tell you some things about them, you’re going to have to look at their specific case. Standardized treatment according to the diagnosis doesn’t cut it now, and it won’t be any more useful once they merge the spectrum; but at least we may be forced to consider each case individually, as we should’ve been doing all along.

Wild Violets

Wed, 11 Nov 2009 03:44:17 GMT

Mrs. Johnson's garden was overrun with wild violets. Violets, if allowed to grow and given their way, will quickly turn into a tenacious weed, spreading to cover the entire area with their heart-shaped leaves and small blue blossoms. Mrs. Johnson, who grew exotic roses, did not like wild violets.

First, Mrs. Johnson tried pulling the violets. Long hours she spent on her knees, trying to clear those violets away; many a sunburn she blamed on the little blue-flowered plants. So involved was she in pulling those violets that she nearly forgot to fertilize her roses.

"But, mama," said her little girl, "aren't the violets pretty?"

"Wild violets," said Mrs. Johnson, "are not roses. And in my garden, anything that is not a rose is a weed."

Across the street, Mrs. Smith hummed happily to herself as she carefully spread fertilizer on her own flower beds. Mrs. Smith, thought Mrs. Johnson, must not know what it was like to have wild violets overrunning your garden. She was much too happy.

Well, all of Mrs. Johnson's weeding couldn't get those wild violets to budge one inch; and it seemed that for each one she pulled out, another one sprouted. Finally, Mrs. Johnson gave up and decided to dig up and turn over the soil and bury the wild violets. So she got out her spade and her rake and she turned over the soil, until all of the garden around the roses was soil and nothing else. She turned over the soil so vigorously that the sharp edge of her spade and the tines of her rake cut more than a few of the roots that belonged to the roses. But Mrs. Johnson was happy, because she couldn't see a single wild violet anywhere.

But one by one, those little wild violets poked their leaves and stems and little blue flowers back up out of the soil. Wild violets are very tenacious that way, and because each little plant can send out roots that sprout into more wild violets, they are quite used to being under the soil for a while before they sprout back up.

Across the street, Mrs. Smith and her little girl were carefully edging their garden with seashells and pebbles. Their happy chatter made Mrs. Johnson absolutely sure that Mrs. Smith had never even seen a single wild violet. "No one," said Mrs. Johnson, "who is overrun with wild violets can ever be that happy in their garden."

Mrs. Johnson had had it with the wild violets. She went to the gardening store and she said to the man at the counter, "I have a problem with wild violets. Sell me your strongest, nastiest weed killer." She bought two big jugs of the smelly stuff, and she sprayed it all over the wild violets. Then she sprayed it again, just for good measure. And slowly, the wild violets began to droop. The little blue flowers dropped to the soil, and the leaves browned, curled up, and dried. Mrs. Johnson watched suspiciously for a long while, but no more wild violets popped their leaves out of the soil.

"Come see," said Mrs. Johnson to her little girl. "I think we have finally beaten the wild violets! See, there is not a single wild violet anywhere!"

"But, mama," said Mrs. Johnson's little girl, "the roses have gone all brown and dry. It is not a pretty garden anymore."

"Well, I just won't have a garden, then," Mrs. Johnson declared. "A person simply can't have a garden when they're beset by such a plague as wild violets." So she dug up her dead roses, spread grass seed, and hired the boy down the street to mow every Saturday.

Across the street, Mrs. Smith, in a gigantic straw hat, had settled down in a lawn chair with the sort of book that you always mean to get back to when the dishes have to be done; and her little girl was just catching her breath from getting to five hundred on her jump rope. Their garden had turned out wonderfully, and the healthy green leaves made a lovely contrast with the designs of the seashells and pebbles at the border of the flower beds.

"Mama," said Mrs. Smith's little girl, "I think this is the prettiest garden we've ever had, isn't it?"

"You know, I do think so," said Mrs. Smith, "and the funniest thing about it is that we didn't actually have to plant anything this year! All the flower beds just started sprouting these beautiful little wild violets."

Why be proud of a disease?

Thu, 05 Nov 2009 19:15:27 GMT

Well, for one, it's not a disease; it's a developmental disability (and some of the milder cases, you can make an argument for it not even being a disability). Autism is atypical development, not a dysfunction of some pre-existing order. Just like you couldn't say that someone with dyslexia or a learning disability has a "disease", you couldn't say it about autism.

Second reason: Autism, by its nature, changes the way you learn and the way you process information. That changes your life and your experiences of the world to a great degree--and it affects your personality, too. Autism is part of the way the brain works, and to the extent that the self is the arrangement of connections in the brain, autism is part of the self. People who accept themselves for who they are tend to also be proud of the autism, deficits and all, because it is part of their identity.

Third: Autistic culture. Research Deaf culture; they've been doing it for ages longer than we have, ever since they got themselves a common language (group of languages, actually) and gathered in one place to talk things out. Autistics got that when the Internet and computer technology became available. Once the first few autistics connected via the Internet, we started forming our own way of communication and interaction. Autistic culture isn't limited to those who can speak, which is where technology comes in: When speech is undependable or absent, anyone who can pick out letters or symbols on a modern communication device can connect to the Internet and communicate with other autistic people. That wasn't possible before digital computers. Now we have not just autistic people, but those in the broader autism phenotype (people with autistic traits but no disability), and parents, spouses, and significant others of autistic people.

Fourth: Disabled people have the same problems that any minority has: Marginalization, prejudice, stereotyping, lack of communication, lack of acceptance. The disability rights movement includes plenty of people who say that part of their identity is their disability; and among those people are autistics. Being a part of a minority affects how you live; so it affects your identity. Many disabled people are proud of being disabled for the same reason that black people might be proud of being black.

Last, a trivial but culturally important reason: Many autistic people have autism-related special skills, either savantlike or the result of years of practice thanks to a special interest. Being proud of your skills is practically a human universal; and even when autism includes deficits that overshadow your special skills, there's nothing that says you can't be proud of being able to do things that most other people can't. Disabled doesn't mean universally incapable, after all.

One last note: Cultural pride does not, and should not, mean a feeling of superiority. Autistic people are neither superior nor inferior, and elitism--even reversed--only leads to the very hatred and prejudice we're trying to fight.

A Highly Recommended Skill

Mon, 02 Nov 2009 04:34:35 GMT

I've just noticed that I've gained a new skill: I can now do schoolwork or read while listening to music--IF the music is familiar.

Music without words is best. Music with words has to be so familiar that I can predict not just the words but the different instrumental parts. But I've apparently learned, now, not to be distracted by music if the music is very predictable.

Why is this so beneficial?

Well, when I wear an mp3 player (they can actually be had for pretty cheap), I get a better effect than I do from earplugs. Earplugs only muffle noise, and in some odd situations can even make it easier to hear things (don't ask me why; maybe it has to do with auditory processing, something like wearing sunglasses makes it easier to see.) But when I am wearing earplugs, I'm still analyzing everything around me, and I can't shut off that tendency to analyze auditory input, spending attention on it and not what I wanted to spend attention on.

Over the last summer, I learned how to use my mp3 player to drown out the quiet noises of a laboratory in action so that I could concentrate on my statistics. This was easy work for the most part, but it was hard enough to teach me how to shut out the predictable auditory input from an mp3 player, which in turn blocks out the unpredictable (and thus impossible to ignore) noise from my surroundings. I can now study in a relatively non-chaotic public place. That means suddenly, I've gained access to study lounges, coffee shops, libraries, cafeterias (in the off-hours) and other areas that are mostly congenial and quiet except for the chatter of other patrons.

The other day I did physics problems at Barnes & Noble. (Bookstore chain with a nice atmosphere, including lots of chairs to sit in and read. They don't even mind if you don't buy something because they know that once you are addicted to books you will eventually buy something even if you don't do it today.) I was able to concentrate despite people having conversations at the next table and the quiet music from the store speakers.

Using an MP3 player in this fashion is, I think, a highly recommended skill. As a result of learning to do this, under certain circumstances, I no longer need complete quiet (or white noise) to study!

-The ambient noise can't be so much that I have to turn up the sound on the mp3 player more than halfway, or it'll be distracting anyway.
-The area can't be chaotic. It still has to be well-organized.
-If lit by fluorescent lighting, the bulbs can't flicker. (New sorts, especially CFLs, flicker too fast for me to see. Whew!)
-The music on the mp3 player has to be familiar, and preferably without words. Classical music is best; soundtracks, second best.
-I have to have a reasonable amount of concentration available. This does take more concentration than studying in a quiet room, though it's a manageable amount of "more".

I knew a lot of other autistic people were very fond of mp3 players, but I never understood the point of playing music practically your entire waking hours. (I play books on tape, for the most part, when I'm doing something that isn't stimulating enough to keep my attention. This strategy literally keeps me from crashing into other cars.) Now, maybe I'm getting the idea. Maybe all these people are using music to block out unwanted auditory input, and simply got the concept sooner than me: It's easier to concentrate when the auditory input you're trying to cope with is ultra-familiar.

Safe Place

Fri, 30 Oct 2009 03:44:15 GMT

One of my cats, Christy, is a little calico I'm fostering because she was so stressed at the shelter that her health started to suffer. She's always been nervous. Other cats make her nervous. Changes in schedule make her nervous. Sounds make her nervous. She doesn't relax anywhere.

When she first came, after she came out of isolation she spent all her time hiding; so I gave her more places to hide--little cubbyholes, boxes, tunnels, and places where she could have a high vantage point, and her back to the wall. She spent a lot of time in these cubbyholes. I made sure she had a cubbyhole in every room, more than one in most places. Eventually, she stopped dashing quickly from place to place, and started walking with a little more confidence to eat, use the litter box and scratching posts and have a quick look outside at the window perches.

I bought her cardboard cat scratching pads; they come with catnip and are made of corrugated cardboard. Those scratch pads were the first place she sat when she came out of hiding; so I bought her more scratch pads. There are four of them now in my apartment, and she uses them for safe places to sit.

Christy's diversifying her places now, too. She's claimed a window perch, where I fed her treats and where she's learned to come whenever she hears the treat bag rattling. And, though she's not entirely comfortable there yet, she willingly climbs up into my lap and purrs while she's there. She'll always be a nervous cat; and she'll always have to be warned when you're going to vacuum and shown exactly where you've moved the litter box or the food bowl. She'll always have to be reassured that claw-clipping doesn't hurt and flea medicine isn't as bad as you think it is; but when I think of the first time I saw her, bunched in the back of the a linen closet at the cat shelter (quite the reverse Houdini, always finding tight spaces to fit herself into), I know exactly how far she's come.

What if, instead of letting Christy have her hiding places, I had decided that she needed to be forced out of her shell, forced to engage with the world? What if I had dragged her out of her cubbyholes, removed all the places where she could hide, and put treats in the center of the room instead of on a safe window perch? What if, instead of letting her hide when she needed to, I had decided to insist on her learning not to hide?

Well, if I had done that, Christy probably wouldn't have survived the year and a half she's lived with me.

But how can that be? I wouldn't have been doing anything mean! I wouldn't have been hitting her, or hurting her. I wouldn't have been denying her food (though most likely I wouldn't have put the food bowls near a hiding spot). I would even have been giving her treats for coming into the middle of the floor, instead of hiding at the edges! I would just have been preventing her from isolating herself. After all, a cat is supposed to be social, right? A cat is supposed to be a bundle of purrs which will allow herself to be hauled around and become a lap animal; and hiding like that is just unhealthy!

...or is it?

Is it really unhealthy to hide?

I say no. Not when you need it. Not when you're a small cat in a very large, very overwhelming, messy, noisy, smelly, and hostile world. Not when the only way you will ever be confident is to have a safe place to sit and contemplate things before you step out into them. The most congenial surroundings are still hostile when you are trapped in them, without a place to retreat to, where you can be in control, where you know exactly what to expect.

So Christy sits in her safe place, and I sit in mine; and carefully, with much planning and observation, we step out into a chaotic world, knowing that there exists a home base, the eye of the storm, whenever we need it.

Psychology Today: "Cowboy & Wills"

Wed, 14 Oct 2009 19:09:11 GMT

Yesterday at the library I was goofing off instead of doing physics homework, and happened upon the latest issue of Psychology Today. Lo and behold, an article on autism. It's a cute little story about an autistic kid who loves animals; and for a change said kid is in the majority who has got the hang of language. That's a good sign, in general, and the article itself isn't bad. But it contains one little annoying phrase that's pretty high on my peeve-o-meter; and the result is this letter to the editor.

Two Minute Memoir: Cowboy and Wills

I read "Cowboy and Wills" with great interest; and part of the reason is that I'm an autistic animal-lover myself. There are a lot of us--not surprisingly, since animals allow for such safe, non-threatening social interaction.

However, I was a little troubled by a popular misconception that was sprinkled through the article. The idea that one must pull an autistic child out of "his own world" seems to have become so prevalent that people don't think about it when they say it. The truth is, there's no need to pull anybody anywhere; it's just a matter of teaching.

We are already in your world. Autistic people see the world and other people just like anyone does. We're very much present in the world; in fact, in most cases we notice more about it--all the little details most people filter out. The problem isn't a matter of being closed off in our own worlds, but of having difficulty understanding and communicating with other people. When you look at us and can't see what we're thinking or feeling, it's a communication issue, not a lack of presence.

Sometimes, when I'm exhausted by the noise and smell and unpredictability of the world, I do withdraw. Having to constantly interact with people is difficult and stressful for me. But "my own world"--you have your own mental world, too, just like I do--isn't a frightening place in which I'm trapped. It's simply the act of relaxing, getting away from the need to socialize constantly. Without it, I'd be unable to function--and when I'm allowed to have my own space, away from the demands of life, I can use it as a safe home base from which to reach out to others.

What happened with the little boy in the article is what should happen with every autistic child: He is given a welcoming environment and surrounded by people who help him to say what he is thinking and show what he is feeling. Gradually, he learns how to connect with other people--something which, if he is like most of the autistic people I know, he has been wanting to do all along.

Not So Different?

Tue, 13 Oct 2009 01:37:41 GMT

A strategy that some people want to take when they try to increase acceptance is to emphasize the similarities between a minority individual and the "norm"; to try to explain to people that, "He's a lot like you. There's no need to reject him for being different because he's not really that different." It works pretty well with racial minorities, and to a degree with minority sexual orientations; and to some extent, it's even true of people with physical disabilities, because with these categories, the primary difference is one of culture and lifestyle, one which most people can understand. But "he's not so different" is a rather misguided approach when you try to use it to encourage acceptance of people with psychological and neurological disabilities.

The fact is that despite having more things in common than not with the average person--after all, we all share the fundamental experience of being human--people with mental disabilities have significant differences from the norm. A person with a mental difference--for example, bipolar disorder--is not just a typical person who also has bipolar disorder. Bipolar disorder, or any other cognitive or psychological difference, touches the person's experience of the world; the way he thinks; the way his personality is expressed. In any sense but the metaphysical, a person is his brain, and when the brain is different, the person is different.

If you try to get people to accept a person with this sort of disability, by emphasizing the parts of his life that are very much like most everyone else's, you may end up getting acceptance only of the person who would theoretically exist without the cognitive difference. That's bad enough when it happens with a physical disability (for example, people who treat Deaf folks as though they are just like hearing people, only without one particular sort of sensory input; ignoring the different experience of the world that they have, not to mention their different culture and language). It's even worse when the difference between the disabled fellow and Joe Average is something that touches the way you think, feel, and see the world.

If, for example, you gain acceptance for people with schizophrenia at the cost of getting people to accept schizophrenia itself, all you've done is gotten acceptance for their parallel-universe non-schizophrenic twins; and the best they can hope for is being treated as though they were those twins, with their differences uncomfortably ignored because they're still thought of as foreign and somewhat frightening. When people are judged acceptable because they're "not really so different", the polite thing becomes to ignore the differences. The differet-ness of these individuals become the elephant in the room, stunting relationships and forcing people to try to put on a show, acting as though these very important parts of their own lives and minds didn't exist.

When the cognitive or psychological difference becomes big enough, this sort of "acceptance" totally blocks communication, because the individual with a big enough cognitive difference sees things from such a different angle that he simply can't be understood under the presumption of sameness. Eventually, the charade that "we're all the same, deep down, really," breaks down; and with nothing to replace it, only the glaring differences remain, forcing rejection by people who don't know of any other possible reaction to unreconcilable difference.

It's probably going to be rather difficult to get people to accept these undeniably weird folks, instead of just assuming the differences must be insignificant. Neurotypicals, especially, but also some neurodiverse, are built to try to connect with people; and they do this by relating their own experiences of the world with the experiences of other people. That trick works fine when those differences are subtle; but it breaks down when they're significant. At that point, the predictable becomes the frightening unknown, and all too commonly,the result is rejection, marginalization, and sometimes even outright violence.

Self-diagnosis

Sun, 11 Oct 2009 19:58:36 GMT

Well, here's my thoughts about self diagnosis...

If you self-diagnose with autism, there are four basic possibilities.

One, you self-diagnose and you actually have autism. Result: You get to know more about yourself, maybe solve some problems that weren't getting solved because you didn't know how to define them. Net benefit.

Two, you self-diagnose and, while most professionals wouldn't say you are autistic, you're very close to it and might have been diagnosable as a child. That would put you on the broader autism phenotype end of the spectrum, with autistic brain-wiring but not across the diagnostic threshold. Result: You get to know more about yourself and get to know other people who are similar to you; and while you don't have major problems, identifying as autistic still puts you in a community of people who are used to eccentrics and accept you more than the very difference-sensitive mainstream does. Still a net benefit.

Three, let's say you self-diagnose and you're totally neurotypical--no mental illness, no ADHD, no weirdness at all. Result: You start hanging out with autistic people, and you realize, hey, wait a minute, I don't really fit in here. These people are having experiences I'm not having and I have no clue what they're talking about. From there, you either get frustrated, leave, and hopefully deal with whatever problem wrongly pointed you to autism; or else you decide, well, these autistic people are OK for friends even if I'm not autistic myself, and you make some friends you wouldn't otherwise have had. In many cases, NTs who think they may be autistic have problems with making friends for some other reason; and in those cases, they may even find the friends they want among the autistic people they have got the chance to hang out with. Net result is just some wasted time, not the end of the world, and maybe a bonus to your ability to communicate with the neurodiverse, if you haven't had a lot of opportunity to hang out with the odd ducks of the world until then.

Four--and this is where the problems start--is if you self-diagnose and you don't actually have autism, but you do have some mental illness, neurological difference, or other diagnosable problem that is causing difficulty for you. In that case, the results aren't so benign, because just like an autistic person misdiagnosed as something else, you may try to deal with a problem while presuming a completely different cause for it than actually exists. In that case, you may be leaving a problem unsolved when it could be solved if you knew the reason. Problems commonly confused with autism include social phobia, avoidant or schizoid personality disorder, intermittent explosive disorder, some kinds of epilepsy, depression (especially dysthymia, the long-term low-level variant), attention deficit disorder, or an eccentric personality combined with some kind of mental/neurological difference.

I'd like to address the possibility that people may self-diagnose and use it as a reason not to try to solve their problems. In my opinion, if you self-diagnose and start blaming your problems on your diagnosis, chances are that you would have found something else to blame, eventually, because you weren't looking for a solution when you labeled yourself--you were just looking for a reason to legitimately give up on finding a solution. That sort of avoidance will happen whether or not the person uses some psychological label as the immediate method; he might just as easily have blamed it on bad parenting, being from a minority race, or being average-looking.

This is pretty obvious when it pops up, though, since you'll find someone who isn't saying, "Oh, here's why I do this; how do you guys deal with this, how can I adapt those strategies," as most self-diagnosed people tend to do, but, "I'm autistic; I can't help it. Woe is me." I honestly don't see that second one very much. But I really don't think this problem has much to do with self-diagnosis, since you can use a correct diagnosis for an excuse just as much as an incorrect one; and would be using some other excuse if you hadn't picked autism. The problem here is avoidance and getting the idea in your head that you're helpless to change your circumstances; it's really got nothing to do with self-diagnosis.

So if you're considering self-diagnosis, how do you make sure you don't fall into the fourth category, the misdiagnosed problem that is harder to solve because it has the wrong label?

First of all, just rejecting self-diagnosis altogether doesn't make too much sense; because there is definitely a place for self-diagnosis. Since it's easier to think about diagnosis in terms of physical illness than in terms of neurological difference, here's an example:

We self-diagnose in other circumstances, and nobody seems to think it's odd. For example, last week, I had a stuffy nose, a headache, and a sore throat. I self-diagnosed the symptoms as a cold and treated myself with a decongestant and hot tea. The cold resolved in a few days. We do that all the time, under a certain set of circumstances: The illness isn't serious; it doesn't require a doctor's visit to cure; and we know enough about it to recognize it when we see it. And if you're wrong about having a cold--say, you actually have allergies--then the symptoms aren't so severe that they actually pose a danger to you.

A cold is easy to self-diagnose, but it wouldn't be so advisable with liver cancer. If you had signs of liver cancer, even if you were absolutely sure it was liver cancer and not something else, you'd have to say, "Hmm, this seems serious. I should go see someone who knows more about this than me, who has been trained to treat it." And while autism is not an illness and cannot kill you, diagnosis of mental conditions follows along the same lines of logic as physical ones.

Bottom line with self-diagnosis is, I think, is I'd only recommend it under a narrow set of circumstances, all of which should be true if you're considering actually doing the research and coming to a conclusion on your own:

1. Whatever problems that led you to consider autism are not severe and don't cause major impairment. For example, if you tend to get exhausted at the end of a day of socializing and have to relax, that's not a major problem; but if after twenty minutes you shut down, melt down, and spend the rest of the day rocking, that's a major problem.

2. You're capable of understanding the concept of diagnosis, including differential diagnosis, have a good background in psychology, have enough insight about yourself that you can take a relatively unbiased viewpoint, are able to study a subject on your own until you master it. If you can't do this, there's a great danger you'll mis-diagnose, and that leads to trouble.

3. You want to self-diagnose so that you personally can solve problems in your life that have been popping up because you are different from other people; or you want it so you can understand yourself better. You don't need accommodations at work, at school, or anywhere else; nor do you need outside assistance.

If it's not causing major problems, you don't need outside help, and you've got the knowledge to do it, then sure, self-diagnose. If you're right, you'll gain self-understanding; if you're wrong, then whatever you do have, or if you don't have anything at all, it isn't serious and can be dealt with on your own.

But if you have major problems, or you aren't sure about how to determine whether you should self-diagnose, or you are trying to get assistance with anything, then you need to go to a professional. I know it isn't always possible to do so; anyone too old to still be in school and with poor or no health insurance may have serious difficulty finding a professional; and in some cases, even though there are severe problems, there has been so much mistreatment that seeing a psychologist can only trigger flashbacks and mistrust. In these cases, sometimes there's no choice but to make the best guess and do what you can with the resources you have. It still isn't ideal, though. Ideally, if there are severe problems for which you need outside assistance or accommodation, you should be going to a professional.

Of course, once you go to find your professional and get his opinion, you have to make sure he's someone who is qualified to diagnose autism and to tell it apart from all the other things that can mimic it--and in an adult, not a child--and then actually to treat you with respect and suggest reasonable solutions to the problem of being autistic in a non-autistic world--but that's a whole different subject.

Autistic Inertia & Sleep

Mon, 05 Oct 2009 04:41:44 GMT

As you probably know, I've been having some severe problems at school and, as usual, my sleep schedule is at the root of it. From what I can tell, it's some kind of circadian-rhythm issue--as in, my body doesn't like a regular cycle, doesn't really know when to sleep. I hear of it happening a lot in blind people (I'm not blind) who can't see light and so their bodies don't pick up on when it's daytime. But a lack of light is not my problem. I have four large windows in my apartment and I keep the blinds up during the day. It could just be that I have such trouble with transitions that I don't want to stop what I'm doing... six hours past when I should have stopped it. Which can mean, six a.m. before I get to bed; and then the naturally wonky sleep cycle kicks in and before I know it my brain says, "Hey, it's five in the afternoon, time to wake up!" or, "hey, it's three p.m., time to go to bed!" what seems to be totally out of the blue.

What I am currently trying:
--Melatonin, which helps to some degree to straighten out a severely messed up circadian rhythm
--OTC sleep aid, which also helps to some degree (but not on the same nights with the melatonin, I haven't asked whether it's dangerous to double up so I won't do it). Problem with this is that I can easily just stay up despite the slight tiredness this causes. If I'm having enough trouble getting myself to bed, I can literally stay up until I'm incapable of thinking coherently, and at that point may stay up two hours longer.
--A computerized alarm clock that gives me an hour's warning, then a fifteen minute warning, then another warning at bedtime (I have it set to wake me up, too, plus an alarm clock across the room from my bed).
--I don't do anything but sleep near my bed (studio apartment--it's all the same room) so as to preserve the sleep/bed connection and not end up with insomnia. For clarification, I only end up with insomnia if I'm actually not tired when I'm going to bed; the problem is getting to bed in the first place.

What I've tried that didn't work:
--Prescription sleep medicine. I only ended up too tired in the morning. Tried both an allergy medicine (for the drowsiness side effect) and amitryptiline.
--Forcing myself to get up in the morning whether I had enough sleep or not, and hoping I'd be tired enough to sleep on time. It only ruined the day, and I'd still stay up too late the next night because I'd have the same trouble getting myself to bed.
--Rewarding myself for getting to bed on time. Wasn't enough of a motivator, no matter how good the reward, which is generally true in cases where the person being rewarded can't do what's being asked. Which suggests some gap still in my skills or my strategy.

So what I have here, as far as I can analyze the problem, is a pretty run-of-the-mill transition thing; inertia, I guess. I have the same problems with other things--getting to class, getting to work, taking a shower, switching from one activity to another. I have the same trouble with eating--I'll forget about it and put it off until I'm starting to get weak from hunger. Embarrassing as it is to talk about, I also wait until the last minute to use the toilet... so that I often find myself running the few steps to my bathroom.

I live on my own, and don't have anybody to force me into bed. This is a global problem, really, but I wish I could solve at least this one aspect of it. I feel like, if only I could force order on this one part of my life, I might be able to organize the rest of it. Organization, and routines, are the only way things get done in my life, other than coming up against extremely strong reminders like the threat of wetting one's pants or passing out from exhaustion; and those aren't a pleasant way to get anything done.

Some advice would be welcome.

So What Now?

Tue, 29 Sep 2009 05:23:59 GMT

It started on May 20th, 2009.* That was the day I got an 89.9% for my final grade in Anatomy & Physiology 2.

That was the final quarter of my official first year back in school, with good accommodations. For the first time, I was passing classes; in fact, I was getting A's. For someone who needs to get into grad school to do what I want to do (I need at least a master's degree and really want a doctorate, since I would love to do research), that's about par for the course. In general, I've been told not to consider grad school if I don't have about a 3.5, decent extracurriculars, and a good GRE score. For someone who in the past has been expelled for poor academic performance, hearing that was very frightening.

Enter Anatomy. Well, no, actually, it starts earlier than that, with a year of classes and trying one's best. During the first part of the year, I had to be hauled to school by the county assisted transport service, which tended to leave at 6:30 a.m., spend an hour and a half taking me a forty-five minute drive to school, and be so noisy and bouncy that I was about into meltdown territory by the time I got to school. But I survived that.

In December, I learned to drive, arranging a driving instructor and help in buying a (very) used car through the Bureau of Vocational Rehabilitation. Being able to drive opened the possibility of evening classes (a necessity; some classes were only offered in the evening) and an escape from the overload of the assisted transport van.

Spring classes were difficult. By the time I was starting spring quarter, I felt like I desperately just wanted to rest. I found myself doing the bare minimum. I still managed to get to class--most days--but my time management was starting to fall apart rather badly. My sleep cycle began to wobble off-kilter, and sometimes I couldn't peel myself away from what I was doing to go to sleep until 3 a.m.

In anatomy class, we were studying neurology. I love neurology. I am very sure I asked more questions than anybody else in that class. As is typical for an Aspie with a special interest, my grades that quarter were very high. It was my chemistry class I was worried about; I cried like a three-year-old when I learned that there was no extra credit on the final and I could not get an A no matter how well I did on the final. Feeling defiant, I studied anyway. My professor must have taken pity on us, because there was extra credit after all, and I managed to get an A despite everything. But I had used up all my energy on chemistry, and could not bring myself to study for anatomy. A low "C" on the final (which covered muscles, not nerves), and all my enthusiasm for neurology didn't matter. The final average was just below the cutoff for an A. My first failure since my second chance.

That's where it started. "It", I think, is the same "it" that happened before, when I failed out of college. First I got nothing but A's. Then I got a mixture of A's and F's. Then, nothing but F's. When I can't force myself to study, no matter how much I love the subject, that's when things start to go bad.

I had managed to get an internship. Well, not "I" had managed, not really; it was more like the disability services office had managed to get me one, after I'd written an essay about what I liked studying and wanted to do with my degree. The internship was meant to get minorities into the science professions, and I counted as a minority because I have a disability. Summer was spent gleefully crunching numbers from telemetric probes implanted in lab mice, picking apart journal articles of varying quality, and devising procedures for counting pixels in microscope images of mouse heart sections. I even did a poster presentation, which, technically, counts as my first scientific publication (well, in the same way that an old home video of a pop star's five-year-old self singing "Old Mac Donald" counts as their first music video).

I have never felt so much at home in a job as I did last summer. They paid me to learn. I know maybe they were just sending me off to dig through the journals when they hadn't anything else for me to do, but for me, figuring things out for myself, with nobody putting numbers on my performance, with the goal just to be to understand a concept... that was a beatiful thing. It was like being three years old again and discovering that when you put six buttons in a circle around a seventh button, all the edges touch. It's facts fitting together into fractal patterns of infinite beauty.

But the cracks were starting to show. In general, I do okay in new situations with a little bit of chaos. Annoyance and mandatory recouperation afterward is as bad as it gets. That first day, though, when everything was disorganized, and I hadn't gotten to the quiet absorption of lab work yet, I had a meltdown. It was a quiet sort of a meltdown, not too bad, not as far as they go; and yet I still ended up crying for fifteen minutes, deliberately (and thankfully undetectedly) giving myself a carpet burn on a conveniently carpeted handrail, and then shutting down afterward. I would have left if only I could have; but I couldn't escape because we were supposed to be going on a tour and I couldn't leave the group. I managed to tell them that I was just tired, and I think they bought that explanation. It's not like they don't know I've got some kind of mental disability. After all, I'm one of the few white faces in the group, and what other explanation is there for a Caucasian, no assistive technology in sight, in a group of minorities? That, and the stimming probably clued them in.

I was in my element, well enough, but fact remained that I did have to scrape together enough organization to get myself to work on time every day, stay focused well enough to get something done, and keep my apartment clean and my cats fed in the meantime. (Said cats really pay for themselves in effort and money, though. Whoever says you have to get a dog as an emotional-support animal is lying. Cats are way better.) As the summer progressed, I tried harder and harder to keep it together. I packed the same lunch every day, to avoid having to spend time planning meals. I dropped every activity other than work. My sleep cycle started disintegrating; I'd get home from work and feel like I had to de-stress, only it took too long and left me not enough time to sleep. Then I ended up being tired in the morning when I left for work, and that would make it even more stressful. Eventually, towards the end, I started occasionally missing work. It never got so bad as to be actually noticeable. I think I missed three days, total, with a couple of times being extremely tardy; I was deeply worried because that kind of absenteeism is grounds for being fired from any other job but they told me I was calling in when I wasn't going to be there, and doing the work well, and that was what mattered.

The poster presentation had a lot riding on it. I was told that my lab had always had somebody place in the poster-design contest, and that they were counting on me. I didn't want to disappoint all the people who had helped me, especially the people at the disability services office and the people in the lab who had put up with me all those weeks. But the boss had left to go to another country, and the people in the lab thought that the poster wasn't due for another three days after it actually was; and eventually we ended up cobbling together something that was mostly composed of other peoples' work. I was frustrated that it wasn't my work; I wanted to put in what I had actually been doing--which had been mostly on another project altogether, not what was on the poster. Granted, everybody who had worked on the project got put in as authors, but it still felt a bit wrong... Then we had an e-mail from the boss, who said I should have used my own work... I could come in on the weekend and work on it, or stay until late just like I'd been donig with this first version of the poster... I very nearly cried like a three-year-old at that point, and rudely claimed to have something else to do that weekend. (I did; I wanted to rest.) Eventually they let me keep the poster the way it was. I felt like a spoiled child having a tantrum.

Even that way it might have been all right, if only it had been a research paper instead of a poster presentation. If you've never been to a poster symposium, let me describe it to you. Basically, there are a lot of either nervous or bored people in uncomfortable business suits and dresses, standing next to an adult version of the poster you did for your junior high science fair and explaining, over and over, in a noisy room, what their project is about, and answering questions from other scientists and possibly interested amateurs. (In our case we had a lot of the latter because we had a lot of parents and friends attending.) Can you already see, then, how much of a capital-P Problem that can be for an already-half-loopy round little autistic woman? Yeah. Put a person with auditory processing issues in a big old noisy room. Ask her to describe, on the fly, complex concepts which she has been studying for less than two weeks, and field questions from people she's never met. Oh, and one of the judges, incidentally, has an accent and doesn't even signal that he's a judge because he assumes you know because, hey, you've been told the names of the judges and couldn't possibly fail to recognize someone who's been working down the hall all summer from you! (Cf. Prosopagnosia.) So... yes. I didn't win anything. Apparently my poster scored high on asthetics, which really only means I'm good at the grown-up version of noticing the touching edges of six buttons around a seventh.

So, with me disappointed and stressed out and I wanna go home!!... The person announcing the winners decides to have me come up to celebrate my recent naturalization as a US citizen... let's just say I was in no mood to have a bunch of people gawk at the newly-American oddity. Basically, I just turned around and ran for it. I don't think I had much choice in the matter; I just couldn't take any more, so I ran out of that room with more grace and speed than I've managed in a good long time, mostly because the alternative was a public meltdown. I had to apologize later, of course.

If my life gets made into a movie, reserve my role for a precocious three-year-old, who will quite certainly be capable of the requisite tantrums.

I mean, I thought I had it made when I learned that I wouldn't hurt anybody nor embarrass myself if I could just go somewhere and be alone when things started to get overwhelming. When I learned to predict meltdowns, and defuse them just by reducing sensory craziness and finding solitary spots to calm down in, I thought I had the problem solved. Turns out I just solved the nuclear-explosion meltdowns, without touching the long-term sort that never reaches critical mass but just slowly poisons everything, nearly undetected until people start losing their hair. (Or getting buzz cuts, anyway. Which I also did, during the summer, to simplify hair care. Female stereotypes can go take a hike.)

I wasn't very ready for this quarter to start. I hadn't managed to normalize my sleep cycle, and it had gotten completely out of control, swinging wildly from a bedtime of anywhere from eleven o'clock to eight in the morning. I was eating anything I could manage to scrounge, either the same three meals every day or anything I could grab from the refrigerator; and by the time school had been on for a week, I had missed classes twice already. Trying to do schoolwork was a joke; I couldn't even engage in my special interests, which take a great deal of concentration to do well, and found myself mindlessly surfing uninteresting Web sites, changing the handles on my bathroom faucet, and clipping my cats' claws (in my defense, the claws were getting much too sharp and very much needed it.)

By the end of the first week, I had developed an irritating irregular heartbeat, something which I have had once before. That time, several years ago, it prompted a visit to a cardiologist for an echocardiogram, which showed a structurally normal heart. I didn't want to go to my doctor about it, because this doctor is the same one who said that birth control pills could not possibly cause my high blood pressure, whereupon I did some research, found out he was wrong, stopped the birth control pills, and achieved a "miraculous" cure. I don't really trust him to know any more than I do about the situation, which comes down to two things: Either I have one of several benign irregularities which show up at random in the population; or it's an easy sign of somatization. Want to guess which one? Clue: That echocardiogram dates right back to the time I was getting all those F's at school.

I'll mention it to the doctor when I get my checkup in a couple of weeks, but I'm not holding my breath the doctor will actually be competent enough to figure it out if it's anything more than a physical manifestation of stress. Most likely he'll check it out when it isn't happening, find a normal heartbeat, and figure I'm being a hypochondriac. Obviously someone who isn't a trained doctor can't possibly figure out how to take their own pulse when their heart is doing flip-flops like a dying fish. And yes, I can't help thinking, What if it's serious. It really shouldn't be, as I've no other signs of anything serious at all, and there are quite a few very benign causes of irregular heartbeat, and the ones that aren't have other serious symptoms involved with them. (What, you think I wouldn't research it? I research everything!)

So by the end of week two, I'm badly behind, the cats have been eating out of the bag for four days and had their litter boxes cleaned maybe once in all that time, and I've got bills sitting in my inbox and money sitting in my checking account, both untouched. I've got homework overdue in all my classes.

I don't even know what one of my classes is about, and everybody else seems to be picking it up just fine. I mentioned bad auditory processing, right? Well, usually I work around it OK. I get notes during class, without worrying about any kind of learning. I go home, and learn mostly from the textbook. I do most of my learning on my own, with professors, good or bad, being not much help. This particular professor speaks English as his second language and seems to compensate by being extremely, extremely vague. On top of that, the assigned textbook contains very little of what he's teaching--my guess, less than ten percent of what he's teaching is in that book. I'm completely lost.

I asked for help in the end of the second week and beginning of the third, knowing just how badly I'm behind, having barely reined in my sleep schedule (read: Getting to bed before 3 a.m. most days). I'm immediately given a note-taker for that hardest class so I'll have half a chance of learning what the professor is vagueing about, and plans are made to arrange a study group. I figure, you know, I might make it. I might still pull this off.

Friday of that week, I come home with a cold. Just a mild little cold, a sniffle and watery eyes.

Straw, meet camel's back.

See, today I had my first physics test scheduled. Out of three chapters, I've done one homework assignment. I figure, if I can study over the weekend, maybe I can catch up, smash that test out of the water like I've done so many times before, catch up, and still get a decent grade out of it.

Only, because of that cold, I was tired most of the time that weekend, just irritated enough that I couldn't pull anything together; and when I did manage to pull some of it together, I realized I had a programming assignment due on Saturday that had to be done right then. I finished that assignment, one of three major projects, and then I never managed to get started again.

Today at about ten in the morning, I realized nothing was getting done at home, so I figured I'd go to school and study in the testing rooms, where they let me go sometimes when there's an empty one and I really need peace and quiet. Only, by the time I got to school, I was at the verge of meltdown, because there is no way humanly possible that a person can learn three weeks' worth of physics in an hour and a half; and what's more, all my other classes were the same way.

So I went up to the desk, hoping that the disability services office might be able to help me, somehow--I didn't know how--and asked whether I might have advice on dropping all my classes, because that day was the last day they let you do it without having it noted on your record. I'd been thinking of the idea all week, kind of an analogue to what I tend to do when I know I'm going to have a meltdown if I stay where I am. Escaping the noisy cafeteria is ever so much easier, though, and involves a lot less trouble; and I really, really didn't want to disappoint all the people who had been trying to help me.

I talked to one of the counselors for a bit, and for the life of me I can't remember what we said. It was probably along the lines of, "You're doing fine, you have a great GPA, and you're going to do fine on this test," like it was normal test anxiety I was worried about. I do, in fact, have some test anxiety; but it doesn't stop me taking the tests. This was more like I was just so tired, and people kept asking me to run another mile, and I didn't know how much longer I could stay on my feet. I kept thinking, or maybe saying, forget which--I just want to go home. Please, just let me go home.

I was finally persuaded to do as I'd thought of originally and go to the testing room to study; only I couldn't manage even that. I got as far as copying the professor's list of formulas to the allowed index card before I took my book and crawled under the little desk, hoping to press myself against the wall and think at least a little more clearly before I had to face the world again. No new concepts transferred themselves to my mind in the process. Maybe it helped a little, I don't know. It certainly wasn't enough.

I had been told to return to the counselor's office, so I did. I think that was a mistake. I should have just turned around right then and there and gone home, because it would have had the same basic effect as what actually happened.

I am constrained in my academic choices by the fact that the vocational rehab department is funding part of my schooling. This quarter, I was funding a good chunk of it from the money I earned last summer, but there was still enough of it for them to pretty much dictate exactly what I was going to do. Among those rules are: Thou shalt take as many internships as humanly possible. Thou shalt remain a full-time student at all times. Thou shalt never, never fail a class, for we will not pay for you to re-take it.

This is what the counselors reminded me of, repeatedly. Looking back on it, I realize just how much my cognitive processes had disintegrated by then, because I couldn't even do a simple calculation to see it from their perspective and understand that their hands were tied in advising me to do anything because my funding wasn't under my own control, in a manner of speaking, but in the hands of the government. I couldn't even begin to understand what the long-term impact was going to be, except that I just wanted to get out of there, so very badly.

Eventually they finally got it through to me that they couldn't do anything about the test, and I basically insulted them in return, by saying that I knew they were my last chance, so because they couldn't help me, nobody could help me. I dropped my folders and backpack on the floor and left the building, saying I didn't need them anymore. By now, of course, I was crying to the point where I was surprised I had any words left to say at all (not that they were actually coherent, nor what I meant to say, but they were words), and I detected a distinct hint of "trying to calm out-of-control toddler" in the tone of voice addresed to me.

Anybody who knows me knows that my backpack is a big comfort object, of course. I had to come back for it, but the walk around the building did me a little bit of good before I faced them again. I had to apologize to them for what I'd said. I think if only I could have gotten out of there, it wouldn't have happened like that. I just hope they understood I wasn't thinking and didn't mean it. I hope they realized it wasn't what I thought about them, that if I'd had any time to think I wouldn't have said it. But the test trapped me as badly as a closed bus door or a campus tour ever did, and I had to stay.

I had to apologize to the campus police, too. Apparently it's campus policy to call them whenever somebody gets upset enough to possibly hurt themselves or somebody else. I can't deny the thought popped into my head, but it really wasn't serious. In the state I was in, I couldn't have planned a serious suicide attempt to save my life. (Sorry.)

So... How many times is that? Three times, in as many months? Usually I have that many public meltdowns in a year!

I had been trying to tell them I couldn't do the test, that it was too much, and they kept saying that I would be fine, I was smart, I could do it. I guess they didn't get it at first. It makes sense, when the "I can't do this; I want to go home" is coming from somebody with a known test-anxiety problem and a glaringly high GPA. Obviously you conclude it's pre-test nerves and they're actually going to do fine. Apparently my theory-of-mind was part of what froze when the part of the brain that likes physics puzzles, manges schedules, and scoops my cats' litter boxes froze up.

Eventually, nothing was really decided. I signed a release for them to talk to my counselor at vocational rehab. I desperately want a quarter off, some time to regroup, but the money can't be refunded. It's either somehow get mercy from the US government, or else try desperately hard for results that may be mediocre at best and quite possibly failing grades, or for that matter could easily be another stint in the mental ward.

I keep thinking to myself, You know, maybe I'm not cut out for college. Intelligence isn't the only thing you need. You need to figure out how to organize yourself, too. For heaven's sakes, you only learned to pay bills regularly a year ago, and still haven't managed to learn how to feed yourself properly; who are you to even think about college? There are an awful lot of autistics out there who have the academic ability I have, and most of them haven't got college degrees. Now, granted, many of them have been held back by circumstances outside their own minds; but some of them aren't any good at college for reasons totally unrelated to academic ability--including, but not limited to, things like being able to sleep at the same time every night, being able to not just put out effort but sustain it for a year or more, and not needing so much downtime that it cuts into everything else, including the rejuvenating special interests.

Will I even be able to get a quarter off? If I can't, how in the world do I manage another year without a break? If I get that quarter off, does it mean I'll always need weeks of vacation, every year; and how it he world can you posibly get that in a professional position of any type?

I'm going to downgrade my estimate of my own emotional maturity. I thought I was about as good as a six-year-old, but there are skills that three-year-olds have that I still lack. Most college students don't go and insult their counselors as basically being useless. Most college students, even autistic ones, know better than to have a public meltdown. I don't.

Whenever I try to open too many programs on the old cerebral computer, things just slow down to a crawl, and my available memory goes down to the point that I'm lucky if I can manage to run Solitaire. But it's not just that short-term, restart-and-it's-solved type of trouble. It seems that, over time, I accumulate bits of dead files, bits of stray data, registry entries that don't point to anything, an overstuffed Recycle bin, a lot of fragmented files, maybe even a virus or two. I try to repair a little of it every night; but once it starts building up, sometimes there's just no doing anything about it unless, somehow, I can get a long time free to run all those systems scans.

Computer metaphors aside, I worry that I'll be like this my whole life--enforcedly lazy, unsure privately that it could possibly be anything more than laziness, insistent publicly that this is all the trying I've got in me, and knowing intellectually that what I'm saying about trying my hardest is almost certainly true. I worry that I won't be able to take a job because people will know I can't put in as much effort as everybody else; that it won't matter that I care deeply about the quality of my work, because I won't be able to put in a forty-hour week, or else won't be able to put in a fifty-two-week year. That's assuming, of course, that I ever become employable. Really, right now I think I'd settle for not permanently jet-lagged.

It's all stil up in the air. I'm privately begging that I won't have to complete the quarter. I don't think I could take any more. If I'm right, I'm already channeling it into physical symptoms. The rest of me, of course, is saying, "Yeah, and if you get a quarter off, aren't you just going to waste it like you waste the rest of your time?"

If you actually read all of that, thanks for listening. I probably just needed to write it out, so I could think about it properly. If you have any advice, please tell me; maybe it'll spark an idea.

*Specific names, dates, and identifying details have been changed to deter possible stalkers. Hey, you can never be too safe.

Autism Speaks has done it again.

Sat, 26 Sep 2009 03:07:27 GMT

Honestly, we should be getting used to this now. Yet another "public service" announcement, yet another batch of people having prejudicial statements thrown at them, all in the name of awareness. The impression I got was that they were accusing autism of being a serial killer or a supervillain... Really. I'm not kidding. But don't take my word for it; read the transcript for yourself.

http://aut.zone38.net/2009/09/23/autism-speaks-hits-a-new-low/

It really speaks for itself, doesn't it?

I don't know that I can say more. I've said it a hundred times already; autism isn't the enemy, I'm not a walking tragedy, and I most certainly do not want people trying to "battle" something that I consider an integral part of myself.

Nobody, especially little kids who haven't learned to defend themselves yet, should be portrayed in such a vicious manner; and don't believe it when they say that little kids don't hear or know that their diagnosis is being compared to cancer and AIDS, because they most certainly do--and it doesn't take the ability to produce speech to understand speech. I am quite sure that if I had heard this ad as a literal youngster, I would have been quite convinced that I was going to die; that is what cancer and AIDS do to you, after all, and autism is supposed to be worse!

Parents with newly diagnosed children, feeling scared and alone, shouldn't have this sort of hateful propaganda coming straight into their living rooms, telling them they will lose their marriages, their hope, their savings, and even their acceptance into society. And they won't have it any better when their neighbors have heard this, too, and know no more about autism than that it is a nameless, faceless horror that stalks a family and ruins their lives.

It's not autism that isolates a family or pursues an autistic child; it's ideas like what Autism Speaks is promoting.

Awareness, on the whole, is a noble goal. I'd like it if people knew what autism was, so they would know what to expect from us and stop being so hesitant to include us in their world. But this kind of "awareness" can only hurt us.

At this point, it seems that we can only hope that Autism Speaks will become so egregious in its obvious bigotry that the general public will pick up on it; because it seems that they have set their course firmly on the path directly opposite to that which an autism advocacy organization ought to travel.

Flu Shot

Fri, 25 Sep 2009 19:08:27 GMT

So... I got a flu shot today. The local pharmacy was selling them for a reasonable price, and since I'm a college student (read: "disease vector"), I needed every chance I could get NOT to be curled in bed for a week with my grades steadily turning into a pile of unidentifiable mush.

For me, the flu shot was also an immunization against another, more mental condition--a childhood phobia of needles, which was so extreme that until the age of fourteen, I had to be pinned down for a doctor to have any chance of sticking me with anything. It wasn't that I didn't understand that getting blood drawn or having a vaccination was necessary; it was just that despite my best efforts, I simply tended to panic and bolt without having much conscious say in the matter!

Since I am not fond of being sick for a week and would like to reduce my chances of getting sick, and since I do not like the idea of going back to being petrified of needles, I get a yearly inoculation against both problems.

There's another factor here, though; and that's the effect of influenza on the community. For me, the flu is pretty harmless. You feel nasty for a few days, then you go back to your life. But there are other people who can't take it lightly--anybody with a compromised immune system; the very young; the very old; those whose income depends on being at work every day, who would be unable to feed their kids if they had to stay home, and would spread the flu to every customer if they went to work.

My grandfather, when he gets a cold, often doesn't shake it for a month. He's in his late eighties, healthy for that age; but the flu could kill him, and since he's older, the flu shot won't be nearly as effective for him as it is for me. In a way, my antibodies can protect people like my grandfather who can't take full advantage of immunization.

At the lab where I'm doing undergraduate research, my co-worker just became a father for the third time. The baby is a little girl, less than a week old. If she got the flu, she could end up hospitalized; at the very least, her parents will be up all night with her for a week. Newborn upper respiratory systems aren't really made to take attacks from the flu. If I had the flu and passed it to my co-worker, it could be a big problem.

And, of course, I'm a college student. My time gets spent in classrooms crammed full of people, in computer labs where hand after hand touches the same mouse, and in buildings with air that gets filtered and passed around repeatedly. If you were to connect me to all the contacts I have in a day, you'd end up with a very, very long list.

People sometimes argue that they don't need flu shots because they won't die from the flu; but there's more to it than that. Somebody else could die when you passed it on; at best, they'd be severely inconvenienced, and it's kind of a thoughtless thing to expose them in the first place. Yes, you can pass on the flu even before you feel sick; so it's not even like you'd know you were exposing people.

Is the flu vaccine 100% safe? No. It's safer than getting the flu; but it does have risks. Same as you take risks when you get in your car to drive to work, or eat food that a stranger in a restaurant prepared, or go into a public building even though, technically, there's a chance someone will go on a shooting spree there that day. Those are worthwhile risks because the chances are acceptably small. The flu vaccine is easily in that category.

Actually, I'll go a step further with that: Not getting a flu shot, when there are enough to go around, is like not wearing your seat belt because you're afraid you'll be trapped in your car if you accidentally drive off a bridge or your car catches on fire. The chances of actually being trapped in your car like that are extremely small; the chances of a seat belt saving your life are pretty decent; and yet people still use that excuse not to wear them (after which other people start thanking God that a matching organ has been found).

Granted: The flu shot's not 100% effective. You mightn't mount a strong enough immune response, or you might encounter a strain of flu that wasn't included in the vaccine. Still worth it? Still yes. The effectiveness is close to 100%, even though it isn't actually 100%, and in the past they have done a reasonable job of predicting what will be most likely to make the rounds every season.

So why get a flu shot?
You don't want the flu, and are interested in decreasing your chances of getting it.
You want to protect the people around you from getting it.
You want to hinder the spread of the flu as much as possible.

And yes, I'll admit it, part of me was secretly enjoying the chance to laugh at the mercury-ate-my-baby hysterics. :)

And you expect me to LEARN?

Thu, 17 Sep 2009 15:32:23 GMT

Want to see my notes for the entirety of my last physics class? Look to your left.

No, it's not some kind of code, and no, it's not some kind of random doodle. It's the pattern of the bricks in the wall of the classroom.

That pattern has bugged me since I first started the class last week. Oh, I know it's got left-to-right repetition; I know the number of bricks generally decreases from top to bottom; but other than that I can't find a solid pattern, the bricks stick out from the wall and give me crawly feelings, and it's driving me crazy!

Know what else is driving me crazy? The entire. Freaking. Class.

Now, you'd think a classroom meant to hold five hundred people, which has one brick wall, would at least have sound-absorbent materials on one or more other walls. You'd be wrong. The entire classroom is brick, concrete block, and wood paneling. Oh, and fluorescent lights. Yeah.

I dropped the only acoustics class I ever took, and even I know that you simply do not build a five-hundred-person auditorium entirely out of rigid materials.

Guess what said five hundred people are doing during class?

If you guessed "sitting quietly and listening to the lecture, aware that any noise will simply be magnified by the badly designed room and inevitably disturb others," then you're a lot more optimistic than anybody has a right to be.

They talk. They whisper. They play games on their laptops. They totally ignore the professor to touch up their make-up!

Whoever designed the room must also have designed the sound system, because no matter where you sit--front, back, or near the speakers--it's not much more than a fond dream that you'll ever actually understand the professor. What I hear is something along the lines of, "mumble mumble bzzzt conduc-- mumble fizzle scrEEEEch! mumble so you mumble bzzt calcul-- mumble..."

Auditory processing issues, noisy rooms, speaker feedback, and crappy sound systems do not mix.

So you can see why I found the brick wall to be the most educational aspect of the entire class...

Death Anxiety

Mon, 14 Sep 2009 08:14:45 GMT

When I was two and a half years old, I first understood what death meant.

My father had recently died, and my mother had told me, "Daddy is dead," as a way of explaining it. At that point I was still using other peoples' words to make sense of my world; so for a long time, I repeated, "Daddy is dead," to myself, over and over. My first memory is of my mother telling a friend on the phone, "She doesn't know what she's saying." I suppose the repetitive mimicking might have fooled my mom into thinking that I didn't know; but I clearly remember thinking--not in words, but in concepts--"Yes, I do. I do know what I'm saying." And I did.

I was four. My grandfather died. I hadn't been close to him, but it was the first funeral I'd ever attended. I knew what death was then, and I had learned to read, so I could put my own words to it; and I was sorry I had to throw a flower into the grave, because I thought it was sad that something so beautiful as a flower had to be thrown away. I don't know if I understood the concept of mourning someone else, at that age; but I understood about crying for lost flowers, and I knew my grandfather wasn't coming back.

I was six, and taking my first plane flight. "I will pray," I told my mother, "that we don't crash." She reassured me that we wouldn't crash, but I could only think--though not quite articulate--"But we could crash. It is a very small chance, but it could happen. My mother is wrong." Of course, looking back on it, Mom must have been simply trying to reassure me, thinking I was afraid. At that point, though, I wasn't afraid yet; just aware.

I was eight, I think, when I first really experienced what they call metacognition--the experience of watching your own thoughts; and not just watching them, but understanding them. Understanding that "I exist" comes in early toddlerhood; understanding what existence might mean comes later. The idea of nonexistence is both frightening and fascinating. Lately I have been perhaps a little angry at God for putting such a tantalizing possibility as Heaven in front of us; how do we know our faith is actually based on wanting to know God, and not just wanting to continue to exist? Of course that idea has no bearing on whether said faith is in a true thing, as both pleasant and unpleasant things can be true; but it does really leave things open to questioning one's own motives, doesn't it?

That was the year I saw my first picture of a dead body--an Egyptian mummy, photograhphed for educational purposes and an odd exemption to the rule that "one must deny to children the existence of death". My mother had been thus far careful to shelter me from all mention of death, as though it might traumatize me; the next year, when a stepfather died, she would insist on a closed casket. The upshot of all of it--the idea that death is frightening (which is true) and to be hidden from (which is not), and the shocking first sight of a skeletonized, shrunken human body--gave me a severe phobia that I would not fully overcome for another twelve years. At the peak of it, the simple thought of a corpse could cause me to freeze in terror. I couldn't even read the dictionary for fear of coming upon the "wrong" word. But, ashamed of my own weakness, I would almost immediately begin to work to expose myself slowly to the reality of death.

Not long after that closed-casket funeral, I got into physics for the first time; first, finding the patterns in the stars, then learning about how they worked, and finally learning about how the universe itself worked. For a very long time, I wanted to be an astrophysicist. But along with understanding the universe came the knowledge that this, also, dies. At the edge of a black hole is a mathematical end to space and time. At the edge of the universe, on one end at least, is a similar horizon; at the other end, depending on exactly how matter is arranged and how gravity and expansion balance, there is another horizon or else a long, slow loss of available energy to the heat death of the universe.

And there it is again. Death. Everything is impermanent. I was fascinated; but also frightened. Information seemed to me to be the one constant, especially after I learned that the intuitive idea that matter itself could only change form was not quite correct. That everything could turn into a homogenous soup of radiation, with no more change and no more newness, was very much like the still very horrifying fact that a human being, with his own mental universe nearly as limitless as the external one, could turn into a similar sort of soup, and in a much shorter time.

Slowly, I worked myself away from the phobia. At first, I looked up words in the dictionary, where one could be sure to see no pictures. Then I read about how the Egyptians dealt with death, and why they kept their dead so carefully preserved. I read about how some people chose death rather than some other thing that they considered worse (and my Protestant mother might have been quite appalled to see the books of Catholic saints I was devouring!). From very young, I've loved stories with lots of action--and with real danger. Maybe it was comforting to see people dealing with the reality of death, and facing the possibility, and sometimes actually dying, at least without going entirely mad. Eventually, I was able to look at pictures like that Egyptian mummy. And last year, as part of my training as a biomedical engineer, I learned human anatomy in a laboratory with donated cadavers, and learned to appreciate the beauty of the human body even in an inert state.

Overcoming the phobia has done nothing for the basic fear. I still wake up, most days, and think to myself, "I'm going to die." I have no terminal health condition; not even anything remotely serious. But, unlike most people, I can't think of myself as a smaller unit in a larger group, nor really get any comfort from the idea that my family or my nation or some other group I belong to might outlive me. I intuitively understood the idea that "I think, therefore I am," the one thing that can ever be proven absolutely, and then only about oneself. My universe is nothing but self--not in the sense of "selfishness", but simply that it is impossible to see the world as anything but the world that comes in through my senses and, as far as I know, may as well not exist when I'm not looking at it. (Quantum physics would say--with a side order of probability waves--that I may not be too far wrong.)

So here I am, a finite person capable of understanding eternity; in fact, incapable of understanding the concept of non-eternity. We all have little universes inside our heads; and when we are not focused on anything else, it is very easy to get lost in them. I have fewer distractions than most people do. And yet... even though my own mental universe is the only one I will ever perceive... there is something about other people having their own mental universes that makes them extremely important. That you are also looking out through your own eyes at this dying universe is a fact I can never experience for myself; but, for some reason, there's an impulse in me to make your universe better. I don't know why. I only know that if I can't leave something behind me, maybe in your universe, then when my own ends, whether in eternity or in nothing, what will be the point of its having existed at all?

There it is: Eternity in my head; altruism in my heart; denying death; and yet in front of me, every time I see things decaying to their most probable state, every time I understand that entropy points only one way, is the reality of death.

You can understand, can't you, why seeing this reality every day mightn't make one at least a little anxious? The biggest question in the world, and we have to leave it unanswered until it doesn't matter what the answer is!

I don't have any profound insights here. I don't know any answers. The existence of the supernatural isn't a firm answer; it's a guess (with what I think to be a very high probability of truth). Naturalism is only another guess. Agnosticism is quite unsatisfying. There's no way to get a firm answer anywhere. Maybe that's what they hide from children when they hide from them the reality of death--that there aren't any answers, not one-hundred-percent answers, except, "I know I exist now. But what, then?"

It's funny how much time is spent telling parents how to talk to children about sex, and how comparatively little is spent teaching them about death. Most everyone is going to face that question; and for some of us, like it does for me, it will color everything we think and do.

Parents, it's the worst thing you can possibly do to hide death from your children. Pretending it doesn't happen; pretending it can't happen; pretending it's so far away as to be ridiculous to even think about... none of that will do any better than just turn it into the shadowy monster in the dark, that you can't look at for fear of how terrible it might be.

Have you ever watched a horror movie, the sort where the monster is kept out of sight for a long time, to heighten the suspense? And have you ever seen the monster pop out, and been frightened for a while; and then realized that yes, it is terrible to look at; but that the fear of it, while you were refusing to look and covering your eyes, was more terrible?

Death is like that, too. Teaching children to hide their eyes does no good; because there's simply no way to walk out of the movie theater without seeing the monster. It may be a hard thing to tell a little one, "No, I don't have any perfect answers, either," but at least it is honest. It is better for a child to face the monster with someone to hold his hand, than to grow up hiding and cowering and fearing the unseen.

Making AS into a "bad guy"

Sat, 12 Sep 2009 16:47:15 GMT

Re-posted from a reply to a comment because I think it's an important idea:

Sometimes parents with kids who have some kind of diagnosis can inadvertently turn the diagnosis into the "bad guy". My parents, who didn't know about AS when I was growing up, blamed it on "PMS" or "being strong-willed/rebellious". I felt rather invalidated when they did that, because it felt like they were saying, "You're just doing that because of Condition X, so we can ignore it because it's not 'really' you and therefore not really important." But the fact is that AS is a fundamental part of people who have it, and that being yourself partly means being AS.

Oh, it doesn't take away your free will; but you make decisions partly based on the fact that you have AS. For example, you might choose to deal with the fact that you have difficulty interacting with people by withdrawing and becoming anxious, or staying social and laughing at yourself, or becoming angry and fighting back, or finding something that you like to do that doesn't involve socializing at all so that socializing matters less. AS is part of you, not an excuse for behavior but, just like personality traits, a factor that influences your decisions. You can make good or bad choices--AS doesn't control them--but either way, AS will be part of the choice you make, because YOU are part of the choice you make. So it's silly to say, "That's not really her, that's just her AS," because it would be like saying, "That's not really a cat's tail; it just happens to be attached to a cat."

Artificial Diagnostic Categories

Fri, 11 Sep 2009 23:28:45 GMT

Those diagnosed with AS are "higher functioning" (need less special assistance) than those diagnosed with "high-functioning autism". But I do not think that means anything for diagnostic purposes. It's not that "having AS causes you to be higher functioning," but more like, "being higher functioning causes you to be diagnosed with AS". There is no clear line between AS/HFA. The groups are basically created by the history of how we discovered autism and defined it for the first time, then enhanced by the stereotype of AS as high-functioning.

If the only reason Asperger's tends to be more independent than classic autism is that psychologists diagnose the people with AS/HFA who are more independent as Asperger's, then the distinction is purely an artifact of the way psychologists see those two categories. It's not a distinction that would be obvious to people looking at the overall group of AS/Autism while unaware of the two categories. This unaware observer would see a single, diverse group.

Popular ways of saying, "This is AS and this is Autism" include:

1. Speech delay. This is the big one everyone points to. But what is a speech delay? DSM-IV says, single words used by age 2 years, communicative phrases used by age 3 years. Seems simple enough, right? But what about the kid who uses single words at 12 months, doesn't get sentences until four, and in the meantime repeats canned phrases to request things? What about the kid who goes straight to full sentences at age 3, without the usual stages in between? What about the kid who speaks on time, answers questions if prompted, but doesn't get the idea that one can spontaneously communicate one's own feelings, desires, and observations? What about the kid who uses functional echolalia? Not so clear a distinction anymore now, is it?

2. IQ. Well, I'm not going over it again, but IQ is pretty worthless to describe what autistic people can do in the first place, but even that stereotyped criterion vanishes when you try to use it to divide AS/HFA. What about the guy who comes in with an IQ of 60, but speech development and self-help development quite at the same level as an otherwise neurotypical guy with a 60 IQ? You can't say Asperger's, but if it weren't for that one little criterion he'd be a textbook case! And then, don't ignore the guy who's so strongly autistic that he needs a live-in assistant and uses a communication device... but gets a genius score on the IQ test. He exists, too, just like the guy with the 60 and the mild autistic traits. IQ isn't a clear distinction, either.

3. Self-help skills. This is the other half of developmental delay. If you're slow to learn to dress yourself, feed yourself, take showers, clean your room, drive a car, pay your bills, or find and keep a job, you have a delay in self-help skills. What's the problem here? Well, it's pretty simple: Both AS and Autism have, more often than not, significant delays in self-help skills. I have "only" Asperger's, and while I quickly managed to learn dressing and eating, I was slow to do all the other things on that list. The real distinction seems to be that if you learn on time the self-help skills you are supposed to learn in your toddler years, then you can be diagnosed with Asperger's--even if you are years behind the NTs by the time you hit puberty. And, of course, there are those diagnosed with Autism when they are toddlers, thanks in part to self-help skill delays, who as adults are independent, maybe holding high-level jobs and having families. We already know that it's a little silly to try to predict an adult situation based on what you see in a three-year-old. Yup, you got it--more fuzzy lines and continuums. No clear dividing line here.

"But you don't need a clear distinction!" some people say. "It's obvious this guy over here, with the PECS, the untestably low IQ, and the ceiling fan obsession, is Autistic, and this guy over here, with the monotone voice, the genius IQ, and the baseball statistics, is Asperger's!"

Well, yes, it would be obvious--if Autism and Asperger's fell entirely into two categories more-or-less along the lines of cases like the above. But the fact is, it doesn't. There are many, many cases that fall on the dividing line--as many as fall neatly into one or the other category. And when there's no clear line, just a list of symptoms that everybody has, you can't call it two different things. You call it one thing with a lot of variability.

It would be like turning mild dyslexia into a completely different disorder, and then arbitrarily saying, "If you learned to read somewhat without special help, you're Disorder X, not dyslexia," even though, just like people with more obvious dyslexia, you still have trouble decoding written words. Or saying that people who have low hearing, but can still use hearing aids, or who are good at lip-reading, don't have "hearing loss" like profoundly deaf people do, but something else altogether--related, maybe, but not at all like those poor people who have to resort to (oh horrors!) sign language!

I am getting more than a little tired of people saying, "Yeah, but I'm Asperger's! Asperger's means being unique and intelligent! It's not a disability, like Autism is!" Get it through your heads, people: There is no clear line between Asperger's and Autism. It's a continuum, and whether you like it or not, you're on the same continuum with the unemployable, diaper-wearing, PECS-using, ceiling-fan-staring guy you so want to disassociate yourself from.

Set Up for Failure

Thu, 13 Aug 2009 01:22:00 GMT

The "abusive" tendency of ABA isn't solely in the physical punishment that some programs use; or anyway, it mightn't need those things going on to be abusive.

It might be worse, for many kids, to be so often told "No. Wrong. You're doing it wrong. That's wrong. Stop doing that. Sit down. Be quiet." Over and over again.

It's not really failing that's so bad. You have to fail a few times before you get something right; and someone who is naturally fond of learning won't mind that sort of failure, as with every failure you learn a little more; but that sort of learning is self-directed and playful, not regimented and externally imposed... in fact, regimented identification of failure tends to make unavailable the tendency to take failure as a sort of natural experimental step to learning. You have to know when you're not doing something right, and know what you can improve (I have in fact had trouble with a professor who would not tell me what I should improve, and had to get a counselor to intercede for me); but there comes a point at which correction becomes not useful but oppressive.

The main problem is that the failure is pointed out, made obvious, repeatedly--while it is labeled, oh-so-strongly, as bad. Unacceptable. When failure is both unacceptable and inevitable (and it is inevitable in all learning), the child is set up for defeat.

When somebody tells me I am doing something wrong, dismissing my effort when I've done my best at it, it hurts more than just about anything you could say to me. Whether that's breaking a rule, or messing up a problem in class, or being reprimanded for being mistakenly rude, every time I feel very bad about it. Sometimes it's necessary, sure; and I don't hate people for doing it. But when I have tried my best, and when it's still no good, it feels like... well, it feels as though I've disappointed myself, and been disappointed by myself, at the same time. I want very much to do well. When I'm told I haven't, it is almost the same upset as having plans changed suddenly.

With small things, it's easy enough to correct. I only feel that way for a little time. Like at work: "Put the slides in the ethanol for five minutes, not three." Okay. I can do that. It feels bad to be corrected; but once I've set the timer for five minutes, the feeling fades and they eventually see I remember to do it that way. Little unexpected events aren't so bad--but they add up. So does criticism.

If I were told repeatedly that I was doing something wrong, especially in a loud, abrupt way like a "NO!" or even a physical slap or shock... Well, it wouldn't be the physical that hurt me the most. It would be the rejection of my effort that hurt. I tried my best and you still do not think it's any good. I've done it wrong. I've failed. That hurts.

I initially failed at going to college because I wasn't ready to live on my own yet, nor manage college without help. I became depressed because of my failure--so badly depressed that I became suicidal and had to be hospitalized twice (though whether these hospitals had any positive effect is rather doubtful). When I am told that my best effort isn't good enough, and worse, that who I am is not good enough, it hurts more than any physical force ever could.

If only they will tell me how to do it right, I don't have too much trouble with corrections. But there is only so much correction somebody can take, especially someone like me. Repeated, over-and-over, as in ABA, "This is the only right way to do things; your effort is not good enough," would have created that sort of suicidal depression in me that happened when I failed in school. Of course, at the age when one usually goes through ABA, suicidality cannot easily be acted on, especially if one's emotions are also blunted from being dosed with neuroleptics. (Some children, reportedly, have tried.)

I'm quite sure I deserved those failing grades, of course. One doesn't learn physics while staring at the wall and trying to gather one's slowed thoughts into a coherent pattern. What might have helped--the supports that now allow me to legitimately earn good grades and hold a (heavily individualized) internship--simply wasn't available to me at the time. Circumstances basically set me up for failure, and the results, with my personality, were inevitable. Still, no one is to blame, because no one--including me--knew I had more challenges than most.

But people teaching little autistic children don't have that excuse. They know the child learns differently... or, they should know.

One shouldn't blame a dyslexic person for not reading a word correctly, nor a deaf person for failing to recognize a tune, nor an autistic person for not reciting the correct greeting. And yet... this ABA... it is setting the child up for repeated failure. For everything the child learns successfully, he will have been told, "No." "Wrong.", or else have his effort ignored (which amounts to the same thing) repeatedly; and it's even worse when the skill is developmentally unavailable to learn at all, and there isn't even a success at the end of all that failure. I think that happens rather often, as people have an idea of autistic people needing years of practice to manage the simplest things. They will try to teach the child something he is not ready to learn, and teach it for years, until he is finally ready to learn it and does; and then they will assume it was their teaching that got him to learn it.

If a child fails at school, you get him tutoring and show him how to catch up. You don't just sit him down in front of the problem until he chances on the correct answer. Long before he does, frustration and the repetition of "No!" and "Wrong!" will have caught up with him, and he'll get the idea that he oughtn't to try at all, lest he fail. Nor does it do any good to guide his hand through the movements of making the right answer on the paper, as it won't mean he's understood the concept; only how to draw the correct figures. But if that child is autistic, both forcing repetition and forcing imitation without understanding are well-accepted and widely-used techniques.

The problem of prompt-dependence might be directly connected to that, too, for some cases. Having to hear someone tell you to do something in order to be able to do anything at all could be directly connected to the natural hesitance that anyone feels to initiate action, after repeatedly having been told "no!" when he takes any sort of initiative. I realize that for some it's an executive function issue; but for others, I would surmise it is closer to, "If I try anything on my own, I risk being told I'm wrong; so I'd better play it safe and not try at all."

Special Interests

Fri, 31 Jul 2009 16:49:31 GMT

I have three main special interests.

Psychology
I got interested in psychology when I was a teenager; it explained a lot about the multiple episodes of depression I have had over the years, starting at about nine years old, and helped me to learn more about myself. From there, I started studying psychology from textbooks and at the library; by the time I was at college, I ran out of things to learn from textbooks and started reading the journals to sift through the newer information on the topic. I eventually got fascinated with cognitive psychology, especially neurological development during the "language explosion" of the early childhood years. I took some college classes in psychology, and easily earned "A"s, generally with 100% on the tests.

Naturally, studying child psychology and language led me to autism, and from there to Asperger's. At this time I had already been hospitalized for depression; but learning about psychology eventually paid off in my personal life in a big way. During a phone call to my mother, I mentioned studying autism and Asperger's, and that I thought I might have some of the same traits as someone on the autism spectrum. Reluctantly, my mother, an occupational therapist who sometimes works with autistic children, revealed to me that she had known I was autistic when the DSM-IV had been revised in 1994, but had refused to have me "labeled".

I went to my psychiatrist with this information, and after an hour-long interview, she agreed that my mother and I were almost certainly right; I had a missed diagnosis of Asperger Syndrome, probably because psychologists who work with adults are not looking for "childhood disorders". (Lately I have been studying the diagnosis of autism spectrum disorders, and believe my correct diagnosis is probably PDD-NOS because I had highly odd speech and some trouble learning how to take care of myself. I look forward to seeing the new diagnostic criteria in the next edition of the DSM, since this might clear up the confusion that causes over half of autism diagnoses to be thrown into the "PDD-NOS" catch-all.) The specific diagnosis isn't nearly as important as what I've learned from it, though.

Now that I know my own diagnosis, I can research autism itself and apply many solutions that other people have found to the problems I myself face. I learned, for example, to regulate sensory input and lower my stress level by wearing sunglasses outside and wearing comfortable clothes. I learned many techniques for calming myself when I become overwhelmed; before that, I had either had tantrums or resorted to self-injury (scratching, cutting, biting, banging, etc.). I learned how to deal with executive dysfunction by breaking tasks into smaller pieces and making up lists and procedures. Since I got my diagnosis, I've been able to learn to drive, keep up a 3.8 at college (I had a 2.1 before), and be successfully employed at an internship in the pharmacology/toxicology department for the first time. Understanding my own weaknesses and my own cognitive style has helped me to realize that people are not all meant to think, learn, and do things the same way; and that I have to tailor those things to my own odd brain.

Cats
I first got interested in cats when my grandparents dropped a pair of barn kittens on our doorstep. Unimaginatively named Tiger, my first cat taught me how to read feline posture, movement, and vocalizations. Oddly enough, I have much more trouble gauging the mood of a human being than I do with cats; I can look at a cat and see how comfortable it is in its environment, what interests it, what it thinks of me, what it is feeling at the moment, and a little about its personality. Cats are comfortable social interaction that require no words to understand and be understood.

I went about studying cats the same way I study most things: I raided the library and exhausted their resources. Later, when I was on my own, I started volunteering at cat shelters and helping manage the feral cats in my own community. In my neighborhood, when a new cat is dumped or a feral moves in from another area, we put out bait in a trap and take the cat to the Humane Society to be neutered and receive a rabies shot. Then, after recovery, the cat is released back into its environment to live as part of a small managed feral colony. The advantages of feral cat TNR (trap-neuter-release) are that one doesn't have to constantly round up feral cats to be euthanized; nor is there a problem with intact cats fighting, spraying, and having litter after litter with a high mortality rate for the kittens and often the mother.

Managed colonies save a lot of money since feral cats tend to keep to themselves and be nearly invisible, and all that's required is to set up a program to watch for new ones and get them neutered. A neighbor two doors down manages a feeding station for the neighborhood ferals, and we even get the food for free from the Humane Society.

I have one cat myself, and am also taking care of two foster cats. Fostering a cat means that the cat is not doing well at the shelter and needs extra care, and hopefully can recover its health and be adopted out. One of my fosters is a very shy little calico who is just learning that it's OK to sit on people's laps after a year; another foster I've had for a week; she was picked up with the worst flea problem any of us has ever seen, anemic and undernourished, and may possibly have cancer. I am taking care of her until we know whether she can recover, or whether she will have to be euthanized. If she recovers, I will try to find her a home. Currently, I am helping manage a database of adoptable cats for the shelter where I volunteer; we hope that an online resource might help improve publicity and get more cats adopted.

Physics & Mathematics
I picked "physics & math" out of a longer list of science-related topics; the other really strong interests in that area are statistics and calculus. I first got interested in astronomy as a child; I learned all the constellations, and then I branched out into the laws that dictated how the stars in those constellations worked. I didn't have the mathematics for it, but by the time I was about fourteen, I understood how relativity worked and had opinions on the newer ideas in quantum physics.

Modern physics has always been a love of mine, but mechanics (Newtonian physics) had their turn, too, when I took a statics class and started really learning how to use Newton's laws to balance forces against each other and fully describe a system with numbers. In college, when I learned calculus, I enhanced my collection of ideas in modern physics with the ability to put numbers on the ideas of what happens when space-time gets curved.

My interest in mathematics is especially odd because I was actually delayed in mathematics as a child; I was working on first-grade concepts in the third grade, and only caught up around the sixth grade and the beginnings of algebra. Apparently, what was hard for me wasn't the logic of mathematics but the memorization of math facts (I finally learned my multiplication tables in high school, when I turned the mathematical ideas of numbers into mental shapes and imagined how they interacted.

Even now, I don't do multiplication the normal way; asked to multiply 8*6, I will imagine 6*4*2 instead. I know that a 4x6 rectangle has 24 squares in it because I can imagine that many squares; then, I stretch that rectangle two units into the third dimension, making a solid with 48 units and coming up with 8*6=48, or else double the 6*4 rectangle to make 48. It's no wonder I took to calculus like a duck to water--calculus is all about merging algebra and geometry and I think of numbers in terms of logic and shapes, not as abstract facts to be memorized!

My current topic in this field is statistics. I love the way you can take a lot of random data, find the patterns in it, and then find the exact odds that this list of numbers actually matches your predictions! I've gotten the opportunity to actually do this semi-professionally during a summer internship at the pharm/tox department at my university. I get to crunch the numbers in an experiment to determine the effects of fructose on the circadian rhythm.

Can I turn these special interests into a job? Well, if internships count, yes. Maybe even for a long-term job. At one point I thought I should be a veterinarian, but there's too much social contact involved... The problem with special interests and employment seems to be that many jobs require social skills plus whatever interest it is, which is why I can't become a psychologist. My current internship is meant for minorities, including disabled people, and I am receiving a lot of help that makes up for my weaknesses and lets me use my strengths properly.

Divide and Conquer

Thu, 30 Jul 2009 05:04:32 GMT

So you have a minority group that's getting uppity. What's your best bet? Well, you divide the minority into two groups. Then you say one group is better than the other.

Doesn't matter what the division is; you can make it totally arbitrary and it'll still work. If the two groups buy it, they turn on each other. Simple, and your work is being done for you. It's a very efficient strategy.

What, you think it wouldn't work? I'm seeing it work in the autism community, and it's not pretty.

The divide-and-conquer high versus low functioning or autism versus mental illness or high IQ versus low or whatever dividing line they happen to think of keeps everybody down, not just the designated "lower" group. You've got your "lower" group fighting your "higher" group for not "really" being part of the group at all, and your "higher" group fighting to tell everybody they're not part of the "lower" group so they're actually OK, and the people who want the lot of you put in your place are sitting back with a very satisfied expression on their faces.

(Let's say "low-functioning autistic" is "an autistic person who needs an aide most or all of the time"--that is, extensive or pervasive support. Of course people move in and out of that category but it's the only possible definition that I can see that has any relevance at all. Functioning labels have very little meaning for any other purpose than answering the question, "How much help does this person need?" and then only if defined concretely rather than stereotyped. Hey, you don't even have to divide people into actually clear categories for this thing to work!)

The idea that Aspies are somehow "better" than "LFA" is ridiculous. Most of us agree on that point--that both groups have the same human rights and the right to keep your own brain the way you want it, make your own decisions, and direct your own life.

We definitely need to stick up for each other. Those of us who require limited or intermittent support need to stick up for the rights of the people who need more than that. Those of us who need a lot of help shouldn't devalue the importance of proper services for those who only need a little. Neither group should say the other is "not really autistic"--yes, autism is a huge, broad spectrum, a big group, and it makes sense to say just how diverse we are; but since when has diversity been a reason to deny rights to anyone? Oh, it's been an excuse, sure, but it's not a reason.

Two more divide-and-conquer strategies I can see: Autism versus disability; and autism versus mental illness.

The first split is often touched off by the fact that some autistic people are not disabled and do not need any extra services. It's common enough to be in that category as an adult if you are on the border of diagnosis as a child. The problem here is that when non-disabled autistics disavow the rest of the spectrum or put down their very real disabilities as "comorbids", the disabled autistics end up being told, basically, "Let's cure you and turn you into an AS/HFA." That's just as bad as trying to turn an Aspie into NT, every bit as much of a violation. It also implies the very idea that the autism rights movement probably hates the most: Individuality and the right to learn and think as you were meant to isn't nearly as important as not being disabled.

Autism versus mental illness: Yes. We know autism isn't a psychological disorder; it's neurological. Fact remains, though, that like many mental illnesses, it comes out in behavioral and cognitive symptoms. And many mental illnesses are nearly as highly genetic as autism. No, we're not "crazy", but why the idea that not having a mental illness makes us any better than those who do? Many of us do have mental illnesses--there's enough vulnerability, what with the social isolation and vulnerability to abuse--but even those of us who don't shouldn't think that makes autistics superior to someone with a mental illness.

The fundamental difference between autism and some mental illnesses is that the mental illness happens after the personality is developed, an unwelcome intrusion, and the person would like to go back to thinking the way they did before. But the freedom to choose your treatment and be treated with respect by professionals, is the same whether you are autistic or mentally ill. People who are too psychotic to make clear decisions should be treated with the exact same respect as people who are too autistic to communicate their decisions--and the exact same respect as those who are thinking clearly and communicating efficiently.

The right to make your own choices, and to be taught to communicate your choices, exists whether you are mildly or profoundly disabled, whether you are autistic, mentally ill, or both. There is no reason why autistic people of all sorts cannot agree on at least that, and work together to achieve it.

There's a big opportunity staring us all in the face, and we don't seem to be picking up on it: People with disabilities of all sorts, and people with mental illnesses, are fighting just about the same battle the autistic people are fighting. The same exact things would benefit us all. We're all in danger of being unemployed or underemployed even when we have the desire and ability to work. We're all in danger of having to live in institutions just to survive, or even being put into them totally against our will. We're all socially ostracised, but extremely small adjustments to a world that wasn't made for us could let us participate just as well as anyone.

Why in the world are we passing that up? Who gets more done--a lot of little fragmented groups fighting against each other for no good reason, or a big group that can force the world to listen?

Bitching about Fat

Tue, 28 Jul 2009 14:53:10 GMT

I'm really tired of the "fat" stereotype... so I'm going to apply my favorite thing to it: Math.

People seem to think that being fat means you eat grossly more than most people; fact is, it's simply not true. To gain five pounds in a year, you need to eat 48 calories extra per day. For reference, 48 calories is about half a slice of whole-wheat bread. That half-slice isn't exactly pigging out--it's little things, like a couple of extra potato chips or a whole apple instead of a half. You won't see someone gaining weight at the rate of 5 pounds a year eating appreciably more than someone at a typical weight level. And if you gain 5 pounds a year, and if at age 16 you weigh 110 pounds, then by the time you are 35, you will weigh 205 pounds... a morbidly obese BMI for anyone who was normal weight at 110.

The activity stereotype isn't very good, either. The idea that fat people sit around on their butts and don't do any exercise is pretty common, but the fact is that many fat people do exercise, some even as competitive athletes. There's nothing stopping you from gaining muscle under the fat, nor does extra weight stop you from increasing your endurance. Let's take that 110-pound person again. If they gain five pounds a year, the difference between their activity level and that of a person who gains nothing is the equivalent of taking a single flight of stairs instead of the elevator to a job on the second floor. If those two people eat the same and exercise the same otherwise--whether they run five miles a day or do nothing else--the person who doesn't take the stairs still ends up at the same 205-pound weight at age 35. (Eat 48 calories extra AND skip the flight of stairs, and you end up at a whopping 300 pounds!)

Or, y'know, it could be a natural difference in basal metabolism. 48 calories per day difference between appetite and energy output is not that much of a gap, and yet, it all adds up (see above).

The differences between lifestyles for people who gain weight versus people who don't are tiny differences--not nearly enough to be observable unless you were to look at the less typical case of gaining twenty or more pounds in a single year (at which point the difference amounts to an extra candy bar or a mile of walking per day). You simply can't say that this is a defect of character--not unless you want to assume that anything but perfection is unacceptable!

Of course, the naturally skinny people get it, too. I don't know what it would be like to be really skinny and assumed to be anorexic, but that can't be any easier. If you think about it, that's basically people assuming you are mentally ill when you are not, and that can be extremely annoying. How many times have you guys had people assume AS is a mental illness or been asked whether you are "taking your meds"? It's bad enough to have to deal with if you have a mental illness, let alone if you don't.

You just can't win.