Abnormaldiversity

Tone Deafness

2012-01-12T07:05:00.000-08:00

This guy doesn't think anyone is tone deaf, yet he's the one who made me think I am.

The video depicts a talk by a guy trying to convince everyone to love classical music. Or more properly, make us realize that we already do love classical music and don't know it yet. (You may want to go and watch the video now.)

Firstly, he depicts the development of a hypothetical child learning piano. The 7 year old, to me, sounds really halting, but all the other ages sound equally good, except that the 11 year old is suddenly better.

And then he gets to the really annoying bit. He talks about different categories of people in relation to classical music, and the last category are 'people who think they're tone deaf'. He says you can't be tone deaf, and to illustrate that, he talks about all the things a tone deaf person would struggle with. Here's the list:

you couldn't change the gear on your car - I'm assuming he means by sound, like how my Dad can tell by sound when I need to shift gears. I shift gears by watching my spedometer, not by listening to the engine. Sometimes I notice the engine sound changes just before Dad tells me to shift gears, but usually it sounds no different. (Then again, I might change in this once I'm a more experienced driver, since I do just have my learner's.)
you couldn't tell the difference between somebody from Texas and somebody from Rome - Here I disagree. There's a lot more to accent than tone. If you can recognize phonemes you can tell when someone uses the 'wrong' phonemes or leaves them out, you can distinguish many accents. I do notice a twangy sound to Texas and a musical sound to Rome, but with many less obvious differences I'm a lot poorer at distinguishing accents than most people. Boston versus New York, for example, I can't tell. Or Australia versus Cockney.
you couldn't recognize different voices on the telephone - I can recognize immediate family, and people with very distinctive voices, but I confuse people very readily over the phone if they don't introduce themselves. Then again, other people confuse me with Mom, so maybe that's not that unusual.
you couldn't tell what mood a person's in by their voice - Yep, autistic. I can tell things like yelling, talking fast or slow, but I find telling how other people are feeling is a lot more difficult for me than it is for most people.

So I'm tone deaf, or at least tone hearing-impaired. And this guy doesn't think I exist. (His arrogance is also extremely annoying.)

Then the piece by Chopin. The BC thing, which he says the C should make the B sad, it doesn't really sound sad to me. I've learnt to recognize that it's supposed to seem sad when you have that kind of combination, and I can hear a difference between it and a 'happy' combination, but it doesn't have any emotional meaning for me.

I also don't expect anything next after BAGF. When the entire room hummed a next note, it really didn't make sense to me where they could've gotten that note. When he's doing the 'wrong' chords and then the right one, I can hear a difference, but neither sounds any better. The 'right' chord doesn't seem satisfying or anything.

And when he asks me to think of someone I loved who is dead, I found it extremely difficult to keep both that and the music in mind. I kept visualizing Timmy (my favorite cat) and tuning out the music altogether, then thinking about the music and forgetting to keep Timmy in mind, and constantly vacillating between the two. My brother says to him the music became the 'background music' for a mental movie about Timmy. His only criticism was that Timmy's meows don't harmonize well with Chopin.

To me, classical music is mainly just noise. I can hear some differences in it if I focus, but it doesn't hold any meaning to me. I do like music with lyrics, because I like the lyrics. But music without lyrics (or with lyrics in another language) is just noise to me. And that's why I say I'm tone deaf.

The Things I Love

2012-01-09T05:43:00.000-08:00

The next disability blog carnival, hosted by David Hingsburger, has the topic of 'the love we have for the things that make the world accessible for us'.

This is a tricky one for me, because I use very little adaptive equipment. Accessibility for high functioning autism is not primarily achieved through adaptive equipment, it's achieved through people. Tolerating a lack of eye contact or other unusual nonverbal behavior, using literal speech, explaining things directly that others pick up implicitly, not getting offended by our innocent social gaffes, warning us of upcoming changes in plans... Most of these things can't be done by a piece of equipment - they must be done by the people we interact with.

In fact, when I think about what little adaptive equipment I do use, it's in very limited and exceptional circumstances. I get a room alone and computer for exams at university. I occasionally go to a Snoezelen room, which is a special sensory room for people with developmental disabilities to experience controlled sensory stimulation. Once, I used a wheelchair for a museum trip because standing too long is painful. For awhile I used a notebook to communicate when I was having a meltdown, but I lost the notebook and haven't had a meltdown that bad for a long time anyway. About the only thing I used on a daily basis was a beeping watch to help with poor time sense, but I mostly felt annoyance towards the thing. (It felt annoying on my arm, kept getting lost if I took it off, and made annoying sounds when the alarm went off, which was even more annoying because I kept forgetting to change the alarm when the corresponding event was over.)

My biggest source of accomodations, really, is my parents. But that's too easy. So instead, I'll talk about the things that I use, which aren't necessarily adaptive equipment (in that they don't compensate for disability), but are important for my functioning and enjoyment. And these are the things I do, in fact, feel genuine affection for.

Firstly, there are my pads of paper and my pens. I especially like black pens that write easily, and I get rather possessive of these and feel genuine sorrow when they die. My papers carry my stories, which channel the people I have created in my mind and the tales I can tell about them.

It's hard to describe how important my stories are to me. When I told them with twist tie people, those twist ties felt like an extension of myself - now my pads of paper do. (This is why it was so upsetting when my teachers would confiscate my twist ties and never give them back. If you do feel it's necessary to confiscate a child's possessions, give them back afterwards!)

There's also my jacket. I tend to wear a jacket in much warmer weather than most people. Partly, this is simply because I'm slow to adjust my clothing to the weather. But whereas I wear runners in fall about as much as I wear winter boots in spring, I start wearing my coat much earlier in fall and keep it on longer in spring. Only when the climate gets so hot that I can't tolerate it do I take my coat off.

My jacket is a shield from the world, because it blocks touch and some sights and sound (especially with my hood up) and the weight of it is comforting. A lot of people with sensory processing differences use a jacket to help with sensory regulation, so I guess maybe you could argue my jacket is adaptive equipment even though it's not intended that way. I like to wear large jackets - when I was younger, I wore an adult-sized jacket that I could fit my legs inside to curl up and keep warm.

My jacket is also a world I carry with me. I store a lot of things in my pockets. When I played with twist ties, my twist ties were kept in my pockets - both the creations and the unused twist ties. My papers don't fit in my pockets, but my pens do, as does the memory stick I've been typing up my finished stories onto. I also stick candies, notes on things like journal articles, and my ID cards in my pocket. As well as wrappers that I couldn't throw out at the time. The weight of my pockets adds to the comforting weight of my jacket, but more importantly, they contain all the small things that I want to have with me at any time. Someday, I'd like to have a jacket entirely covered in pockets, all zippable so things won't fall out.

The last 'thing' is the Internet. The Google homepage gives me a little feeling of happiness when I see it, because it's been my portal to wonderful discoveries. I was basically educated by the Internet. In school, most of my true learning took place in my free time when I googled things. When I was homeschooled, I spent almost all of every day on the computer, and my education came primarily from the results of Google searches. (Plus PubMed, of course.)

The university libraries give me a similar feeling as Google does. I spent many a happy hour curled into a corner of the library with a stack of books on my chosen topic. My Dad has a photo he took once when he came to fetch me from the Education library. Photos taken without the target's knowledge always seem to show the person's personality more clearly, and in this one, the joy of concentrated learning is plain in my demeanor. My idea of heaven is a library with every book ever written, and myself able to read any language.

These are the things I love.

Too Sensitive

2011-12-28T02:41:00.000-08:00

How many times have I heard those words? 'You're too sensitive.' 'Don't take it personally.' 'Just ignore them.'

Those words always serve to invalidate my complaints. The problem is not the situation, it's my sensitivity. Never mind that many of those things bother other people as much as they bother me, such as with bullying.

But what if they really don't bother others as much? I've been told that I'm too sensitive about online flaming. When I'm the target of a flame war, I literally can't sleep. I almost quit a game I really like because the culture of the players is so unpleasant. Meanwhile, my brother gets it just as bad in that same game and just shrugs it off - the same boy who is chronically depressed from just watching bullying at school! If my brother can handle this, maybe the problem is me.

Except, I don't think what makes me more sensitive is really a bad thing. You see, many people tend to forget that online interactions have other people on the other side. I never do. When someone tells me hurtful things about my newly level 85 mage, I am acutely aware that this is a person, choosing to say these words to another person. To me.

And besides, even if I am too sensitive, so what? I can't turn it off. I tried, in the past, and it didn't work. They may not be expecting me to be that sensitive when they first say something hurtful, but once I've reacted, they know. They know that they have hurt me. They know I'm sensitive enough not to shrug it off.

Given that, it's a matter of ethics. Do you knowingly cause pain to a person, or don't you? If they playfully punched someone in the shoulder, and the person doubled over in pain and said they had arthritis in their shoulder, would they hit them again?

Watching A God At Work

2011-12-27T04:05:00.000-08:00

I have just recently signed on as a backer to the Grandroids project. As a backer, I get access to a special website where Steve Grand provides detailed progress reports (for example, recently he got the motor system working and tested it out by giving the creature a seizure).

For those of you who don't know, 20 years ago Steve Grand made the first game of my favorite series, the Creatures series. In this series, you raise little creatures called norns (at least you're supposed to, but it's a very open-ended game so you could instead leave them struggle to survive on their own, do experiments on them, run game show type activities while getting forum members or blog commenters to vote on them, the possibilities are pretty much endless). It's not like most artificial pets games, for one big reason - the norns are alive. They have their own internal biochemistry - they digest food, breathe, get sick or poisoned, they even have ATP and ADP. They have a neural network brain that can learn from experience and decide what to do. And they have a genetics code that decides the structure of both, which is inherited from the parents but with a few random mutations - which means they can actually evolve.

However, this had to run on computers in the 1990s. So the norns are very simple creatures, by real-life standards (even though by digital standards they're the most complicated life simulation so far). A single worker ant would beat them in intelligence. Their biochemistry didn't require conservation of energy, so sooner or later they all evolve into immortals. (This is most well-known in Docking Station, where the warp system that allowed players to trade norns also allowed many generation lines that were far longer than the patience of any players.) Their motor control consisted of genes specifying animation poses and other genes stringing those poses together, allowing for some very unrealistic motor disabilities (such as a disability where, when angry, they'd step on the spot instead of moving forward, but any other time they walked fine).

That's where Grandroids comes in. Steve Grand no longer has anything to do with the Creatures franchise - this is his new project. The Grandroids (which will not be called that, by the way) will have most, if not all, of the above design issues fixed. They will have much more complex biochemistry, based on some of the features of real-life chemistry. They will have a motor system much like ours, meaning the kinds of motor disabilities they get will also be much like ours. And although we have no idea yet how smart they'll be, Steve Grand's goalpoint is orangutans, which are almost as smart as humans. Their genetics will also be more complicated, and at the same time more familiar to many users because it's more similar to mammalian genetics.

Some of the backers have jokingly compared Steve Grand to God, and vice versa. Which brings me to a new philosophical question. I don't know how smart the Grandroids will be, but either they, or some future project building on this one, might involve creatures smart enough to have their own culture, their own belief system, their own religion. They may be smart enough that people could tell them about Steve Grand, and they would understand that he created them. From their perspective, Steve Grand is, quite literally, God, with the players being lesser gods controlling their individual universes.

What impact would this knowledge have on their cultures? Certainly some players may tell them the story of Steve Grand, and others may not. Those who do tell the story will each tell it a little differently. What impact might that have?

Furthermore, each player has a different playing style, which will have a different impact on their lives. They may have a kind, nurturing god who cures their sick, teaches their young and protects them all from the dangers in their world. They may have an absentee god who hatches the first generation and then has minimal involvement, returning much later when the wolfling run is over. They may have a newbie god who tries to care for them but speaks gibberish to them, confuses them by calling things by the wrong names, and punishes or rewards them pretty much at random. They may have a mad scientist god who hatches children with serious disabilities, puts them through weird tests, or creates strange new objects for them to interact with (some of which may be intentionally or unintentionally harmful). They may even have a sadistic god who enjoys watching them suffer, and who only helps them in order to ensure that they survive for more torture.

Each of those gods will bring a very different experience, and this, too, might shape their culture. If, like Christians, they see god as an attachment figure, they may react the same way that they would to a caring or neglectful parent. (I'm guessing the first generation especially may see us that way, given that we'd be their only parents.) This may impact on how they treat their own children (assuming they raise their children, unlike norns). Or they may view god more like a king, and see in their god's actions the way an authority figure should manage their underlings.

If multiple players share the same world, or if they get traded or warped between players, they may even see different gods managing things very differently. For example, some norn torturers posted norns they'd tortured on their websites, and other players downloaded these norns and tried to rehabilitate them. It's pretty much lost on norns, but maybe these Grandroids would come to interesting insights based on this contrast.

Lastly, what impact might this have on human culture? If Grandroids becomes well known, will it cause a shift in how we view life? Will religious people draw parallels between Steve Grand or Grandroids players and their own God, for example wonder if God is giving us a wolfling run and the end times will come when he decides to return and see what we've evolved into? Will ethicists speculate on what rights Grandroids deserve, similar to how they speculate about animals? Will researchers write papers using Grandroids as analogues to humans? Lastly, what will the next generation think? People who played Creatures as children are now adults. When the people who played Grandroids as kids have grown up, how will they see life and the universe?

I don't know the answers to any of these questions. And some of them may be my imagination running wild, and the Grandroids won't be in a position to raise those questions. But still, it's incredible to watch new life being made, and wonder about the meaning of life.

Pacifist Ponies

2011-12-22T06:44:00.000-08:00

Lately, I've gotten to be a fan of the TV show My Little Ponies: Friendship Is Magic. Normally, I wouldn't even consider watching My Little Ponies, because I thought of it as just a little kids' show. But when Amanda Baggs wrote a blog entry about how one of their episodes showed something important about relating to animals, I decided to give the show a try.

And I found out that it's really good. Better than many 'more adult' shows that I've enjoyed.

They have consistent characters.They have plots that aren't always wrapped up in a single episode. They have protagonists who aren't always right, and when they're wrong, they're wrong in ways that make sense for that character. They have an interesting world that works on different rules from our own, but remains internally consistent. They have characters who see their own world as the norm instead of seeming transplanted from our world.

And with all that, they also have a strongly positive moral message.

Most TV shows, whether for kids or adults, have certain kinds of problems always being solved by violence. Kids' shows usually involve beating bad guys up, adult shows often involve killing said bad guys. Violence is also the solution to a good guy turning bad - you beat them up and restrain them, then fix whatever is wrong with them against their will.

My least favorite My Little Ponies episode(s), the two-parter Return of Harmony, is what made me realize this most clearly. That episode, unlike the rest of the series, does solve the problems with violence. The contrast made me appreciate the other episodes even more - even the first season's two-parter, with its own big bad, is resolved peacefully.

Resolving conflicts peacefully is not only a good moral example, it also requires more creativity. A violent solution is always basically the same, while every peaceful solution is unique. In the superhero and crime-fighting shows I usually watch, very often I know exactly how the story will end - the hero will beat up the bad guy. In My Little Ponies, in constrast, I'm never quite sure how they will resolve the conflict.

And furthermore, in most TV shows, almost all conflicts result from villains. In contrast, most My Little Ponies episodes have conflicts arising from good characters who make mistakes. One episode involved TwilightSparkle, a diligent student, panicking because she doesn't have a lesson about friendship to write to her teacher this week. She is catastrophizing about how her teacher (the princess of the realm) will react to her being late with her letter, and running around town looking for a problem she can help a friend with. It gets to the point where she decides if she can't find a problem to solve, she'll make one. This is not a villain deciding to try to drive a wedge between friends in order to be evil. Instead, it's a good character getting herself into a mess and doing something bad because in her current mental state that's what makes the most sense. (The lesson for that episode isn't for TwilightSparkle, but for everyone else - even if a friend seems to be overreacting, you should take their concerns seriously because it's real to them.)

Karla Homolka and Co-Offenders

2011-12-13T04:40:00.000-08:00

Recently, I found a Cracked article titled 5 Horrific Serial Killers (Who Are Free Right Now). The only woman on the list is Karla Homolka from Canada, a serial killer co-offender.

Karla Homolka met Paul Bernado when she was 17 and he was 23. Shortly before their marriage, Paul Bernado became obsessed with her younger sister Tammy and convinced her to help him rape her. They drugged Tammy and both of them raped her, and she choked on her own vomit and died. The two later kidnapped, raped and murdered two other young women before the police were onto them.

All three attacks were instigated by Paul Bernado. He also physically abused Karla, at one point beating her with a flashlight until she was covered in bruises. Paul Bernado also did several separate crimes - a series of rapes. Karla Homolka claimed that Paul Bernado forced her into participating in the killings.

Now, it's unclear if this is true. Paul Bernado gave a conflicting account that claimed that while he and Karla both participated in kidnapping and rape, Karla did the killings of her own initiative when he was out of the room. It all depends who you believe more. But much of the public outcry over Karla Homolka's shorter sentence, including the Cracked article, is based on the assumption that if she didn't want to be a party to murder, she would have gone to the police.

Stanley Milgram originally made a similar assumption. He designed a study in which the participant, designated the 'teacher', attempted to teach a word list to the 'learner' using steadily escalating electric shocks. The learner was in fact a confederate, was not receiving any shocks, and was instructed to progressively make mistakes, protest the situation, and then eventually fall silent (suggesting the possibility of serious injury). Milgram predicted that only a small number of people would proceed until the experimenter agreed to stop - most, he felt, would refuse at some point.

He was wrong. Fully 65% of people showed full obediance to the experimenter. Of those who broke off the experiment, all had progressed at least to the point where the learner fell silent. Repeat studies have confirmed this finding, as well as extending it to a situation where three 'teachers' (two confederates and the subject) conferred about shock and the two confederates both pushed for a steady increase.

Of course, there are numerous differences between the situation of Milgram's subjects and that of Karla Homolka. But the differences go both ways. On the one hand, the subjects in Milgram's study were not directly faced with their victims, since the learner was in another room. The experimenter, a scientist with a respected university, promised that no harm would come to the subject. And the participants believed that good would come out of the study, since it would advance scientific knowledge. None of this appeared to be true for Karla Homolka.

However, the experimenter had no power to punish the teacher in any way, whereas Paul Bernado clearly could cause harm to Karla Homolka. The subjects had no prior attachment to the experimenter, whereas Karla Homolka was in love with Paul Bernado. Furthermore, once she'd done the first attempted rape of Tammy, going to the police would have involved confessing to her own wrongdoings as well.

If Karla Homolka's account is to be believed, therefore, she was not so strange as people think. Many people, in a similar situation, might do the same thing. Not that her behavior was in any way morally right. But it was not necessarily the behavior of a psychopath. It could have simply been the behavior of an overly loyal person, or perhaps a coward.

Not-So-Friendly Teamwork

2011-11-30T04:23:00.000-08:00

As a kid in school, I felt bad about groaning inwardly whenever a team-based game was announced in gym class, and cheering inwardly about 'every man for himself' type games. I'd been taught that team games had all these virtues - building comradery, teaching people to work together, encouraging cooperation - did I not appreciate those virtues? Was I a selfish person because I didn't want to be on a team?

No. I'd simply noticed something. When we played games where every player succeeded or failed independently, no one cared if I did poorly. I'm not a very athletic person, never have been. I can't consistently hit a semi with a ball, much less another person. When I played only for myself, that never mattered. I could fail most of the game and still have lots of fun.

But put me in a team, and the bullying starts. At best, I could just hide in the background and do nothing, and they might ignore me. More often, people would start getting mad at me whenever I missed a throw, claiming I was useless and so on. At the same time, the opposing team would be uncharacteristically nice to me, even though most of my usual bullies were boys and we usually played boys versus girls. In one game, where you had to steal balls from the opposing team's base and players who got caught were stuck at their base until rescued, I'd actually deliberately get myself caught so I could fool around on the football net framework thingy while joking around with the same boys who usually bullied me.

In World of Warcraft, my favorite part is questing. No one but me cares if I have to retry a quest boss 10 times in a row before I finally kill him. If the entire game consisted of questing, I would be much happier.

But it's a multiplayer game. And as such, there are times that I'm supposed to work with other players to complete various achievements - and even worse, this is the only way to get really good loot. The battlegrounds (where 15 or more Alliance fight 15 or more Horde) aren't that bad, because I can fade into the crowd and no one notices that I've spent most of the battleground waiting to resurrect. At worst people level criticisms at large categories of people (eg 'everyone who is dpsing in mid instead of going after the flag') and I usually am not doing the same thing as everyone else.

The worst are the dungeons. Five players form a team to take on very difficult monsters - three damage-dealers, one tank, and one healer. Occasionally, I get a good dungeon group, especially in the lower to middle levels. But very often, I find people looking around for someone to pick on (usually me) and verbally abusing them. People will inspect what gear you're wearing and if it's not (in their opinion) the optimum gear for your class and role, they'll freak out and try to get you kicked from the team. They will also kick people for using the wrong combinations of abilities, or sometimes for no apparent reason at all. Sometimes they'll kick a person for a failure that another person caused, such as kicking the healer for not healing when the tank didn't wait for the healer's mana to regenerate. Or kicking a tank for dying when the healer was trying to be a damage instead of healing. Or kick a damage for dying because the tank didn't keep the enemies off of him or her.

Honestly, if I heard that there was an offline version of World of Warcraft where all the other players are replaced by non-player characters who can do the same jobs, I would cheer. That would really make my day. Of course, far better would be if people could avoid freaking out over everything another player does that could possibly be criticized, but I don't know if that's even possible.

And I don't think it's coincidence that every game that people turn vicious in is a team game. And the fact that I hate all team games doesn't mean I'm not a team player or someone who appreciates cooperation and such. It's a reasonable reaction to the way teams tend to act.

I think it's the fact that in a team, your success or failure could depend on another person instead of on yourself. For psychologically healthy people, this isn't that big a deal, because failure isn't a big deal - it's just a game, after all. But for a perfectionist, failure is devastating. And if your success or failure depends on other people, then you may decide to scrutinize and criticise your teammates in the hopes that you can either get them to improve or (more likely) get them excluded from your team.

Of course, this is not an appropriate choice. If failing in a game is so devastating to your self-esteem, it's better just to not play. After all, though you may hate to hear these words, it's just a game.

And to school gym teachers (and video game designers) take note: team-based games aren't all good. They can bring out some really vicious behavior among the players. Personally, I would like team-based games banned from school altogether, and replaced with individual fitness activities. You can have them as optional extra-curricular activities, but don't ever force a kid to play them. You can use the individual activities to build team-game skills, such as dribbling. Better yet, you could actually teach motor skills instead of just calling for more effort (we wouldn't accept any other subject being taught so poorly). And not only will these changes greatly reduce gym class bullying, but they'll improve lifelong fitness. After all, how often are adults able to rustle up a large enough group to do a team game? Individual fitness activities can be done much more easily in adult life.

Meanwhile, I'm left wondering if World of Warcraft is worth all the hassle. I love the storyline, I love the gameplay style, but the other players have gotten me so miserable that I'm thinking maybe I should stop playing. At least until the next patch comes out and I have more questing zones for my max-level characters.

Read the Label

2011-11-08T05:04:00.000-08:00

A lot of people are critical of labeling individuals with disabilities, particularly those individuals who in previous times would've just been considered unusual. They say that labels limit people, that labels stereotype people, that labels make it sound like the label sums up everything about the person.

I can see the concern. But if there is any truth to the label, it also has a significant benefit.

When I'm volunteering with disabled kids, I always want to know what disability they've been diagnosed with. Let me use S for an example of why. S is obviously disabled - she says only short repetitive phrases with poor pronunciation, she has a noticeably odd gait, her mannerisms are very unusual, and she does unusual things (eg getting into your face and then exclaiming a noncommunitative 'go home', or walking into people and things as if she didn't see them). I could, of course, just leave it at that. Who needs to label S? She's just S, obviously unusual and very recognizable (chances are if you've met S, you know who I'm talking about).

Well, S has Rett Syndrome. And given my knowledge about Rett Syndrome, this label tells me something important that I may not otherwise have guessed - S has severe motor apraxia. This is a higher-level motor disorder that impacts the connection between movement and intention. She will often want to do a movement but be unable to start it. In addition, certain cues can make her do certain movements whether or not she wants to do them.

This means several things. Firstly, it means I don't need to invoke a cognitive explanation for something that could be a motor problem, such as her repetitive speech or her walking into things, which raises the possibility that she might be a lot smarter than anyone has guessed. Secondly, it means that when I try to communicate with her I have to do a guessing game - did she intend to do that or was it automatic? And thirdly, it means that I can help her do things she can't do independently, by giving her the right cues. If cued properly, she could partially dress herself, for example. I'd do half the movement for putting her clothes on, and then wait and see if she finished the job. And sometimes she did.

Does my use of labels mean not recognizing individuals? Certainly not. I have worked with many children with the label of autism. Each was distinct, each had their own way of relating to the world. The autism label helped to guide me, giving me hints about reasons for their behavior (probably not attention-seeking or manipulative, probably related to the sensory environment, dislike of change, or motor planning issues, etc) but each individual still has their own quirks. I briefly met another girl with Rett Syndrome, and she was very different from S (mainly a lot lower functioning, as she was in a wheelchair and had no speech or self-care skills).

But the individuality of these people does not negate the benefit of labeling them. All autistic kids are unique, but I have yet to see an autistic kid misbehave to get attention - something many Down Syndrome kids I've worked with have done. Most of the autistic kids I met would react adversely to a noisy environment, though I did meet a few who were fine with it. Many had problems if we changed their routine, although this ranged from aggression, self-injury and screaming at being in the wrong change room to simply seeming confused and less capable than usual in an environment where we did a different thing every day.

And with regards to myself, how I feel about my own label of autism? Well, before I knew about autism, I had many experiences that I lacked the framework to name, explain and acknowledge. I experienced sensory overload, but with no idea that it was sensory overload rather than just being picky and demanding. I felt that I was lazy because sometimes I could do things and other times I couldn't. I assumed (since my sex education classes assumed) that I would experience sexual desire, and mistook many non-sexual feelings for sexual during my early teens. I thought I was stupid, and when other kids failed to understand things that seemed obvious to me, I concluded that they were even dumber - completely failing to notice that I'd decided my entire class was stupid!

Finding out about autism has given me a framework to recognize those things about myself. It's also taught me that I can't just 'try harder' and expect to get results - I need to try differently. And most importantly, it's eased my loneliness. I now know how to find people who think like me, by looking for the label of autism. This was one big motivation in starting to work with autistic kids, because I feel less lonely when I spend time with a kid like me. And even if they're lower functioning than me, they'll have things in common with me that I don't have in common with NTs.

So read the label. It'll tell you something important about the person, even though it won't tell you everything.

My Thoughts On Norn Torture

2011-11-03T07:16:00.000-07:00

OK, first, a background. There is a series of games called Creatures. Currently, the series includes Creatures 1, 2 and 3, as well as a free game called Creatures Docking Station, and two children's games called Creatures Adventures and Creatures Playground, and soon there'll be a free-to-play online game Creatures 4. In each game, you raise these creatures called norns (though there are other species some players choose to raise instead, who differ only superficially from norns).

The really interesting thing is that this isn't just a pets game. It's a simulation of life. The norns have their own biochemistry, and their own neural network brains, with the features of both being controlled by individual genetic codes. If two norns have a child, the child will have the features of both parents, as well as a few unique mutations. Over time, you could end up with a population of norns substantially different from the ones you started out with.

It's also a very open-ended game. The manuals and such suggest raising and nurturing your norns, but there are many other things you could do. I prefer to run experiments on my norns. Some people code injectible objects for the game, or create new breeds of norns. Some ignore the norns to play with the ecosystem in the game. Some raise the other two species - grendels and ettins - that are present in most of the games. Some leave their norns to their own devices to watch natural selection in action. And some decide to torture their norns for fun.

This last point caused an outcry in the Creatures Community. A Creatures player named AntiNorn put up a website about torturing norns, including several agents that would help torture norns, and some norns that he'd tortured. Several other Creatures players proceeded to flame him viciously and try to get his site shut down. Debates erupted on Creatures chat forums about the ethics of norn torture and whether norns counted as alive enough for animal rights.

This was all before my time with Creatures. AntiNorn has left the Creatures community, other norn torturers are active but much less vocal, and the 'norn rights' people have mostly gone silent as well. It's interesting how certain things become topical at one time and less so at another time. But anyway, I'm weighing in on this issue now.

I consider norns alive. My definition of life requires that a creature have inherited variations between individuals, that they need to eat to live and that they can die. Individual varieties of norns don't meet those criteria, but norns as a group certainly do. However, I don't think norn torture is wrong.

Here's my reasoning. What makes torture wrong for other living creatures? The simple answer is that it causes suffering. But it's not just the immediate suffering at the moment of torture, it's the psychological trauma that results which causes the bulk of the suffering. If torture caused only immediate suffering and no long term suffering, it would be much less problematic.

Well, that's what it does with norns. There are several cognitive mechanisms required for psychological trauma to occur. One of the big ones that is present in almost all lifeforms is classical conditioning, also called Pavlovian conditioning.

There are two types of conditioning - classical and operant. Operant conditioning is when a behavior is either rewarded or punished. If the behavior is rewarded, it becomes more frequent, and if it is punished it becomes less frequent. So, for example, if a rat is given a treat for pushing a bar then bar-pushing will increase, whereas if the bar's presses cause the floor to electrify, the rat will avoid pressing the bar. Operant conditioning also takes into account the environment; if bar pressing provides food when the light is off and shocks when it's on, the rat will press the bar only when the light is off.

Classical conditioning, first described by Pavlov, is when a stimulus that automatically causes a certain response is paired with another stimulus, and the new stimulus comes to trigger the same response. For example, a dog salivates when food is put in his mouth; when a bell is always rung before the food is delivered, the dog starts to salivate at the bell. Classical conditioning can also involve conditioned emotional reactions, such as conditioned fear.

In real-life creatures, classical conditioning is more basic than operant conditioning. Most creatures have both, those that only have one always have classical conditioning without operant conditioning. Norns are the opposite - they are capable of simple operant conditioning (though not chaining), but they aren't capable of classical conditioning.

Which means that when a norn is tortured, they go through all the unpleasant emotions of the torture, but once it's over and they've calmed down, they're fine. They may have some weird learnt behaviors, but they experience no more emotional distress than a norn who has been raised kindly all his/her life. Unlike humans or even many real-life animals, they won't feel terror at stimuli similar to the torture setting.

Of course, there's more to trauma than classical conditioning. But most of the other parts of trauma require even more complex cognition. Learnt helplessness, for example, requires the ability to realize that you can't do anything to stop the situation, which means you have to have a running tally of what you've tried and a systematic trial-and-error process instead of just random behavior. Losing the 'just world' illusion is another important part of trauma, but that requires that you have a worldview, that you're capable of forming a general conception of the world you live in, which is a pretty high-level ability. Disrupted attachment can be a consequence of certain types of trauma, but only for creatures who care for their young. C3/DS norns can learn to like or dislike individuals, but don't need emotional attachment - prior generations of norns can't even do that much, only form concepts of norns/grendels/ettins as a group. They show no more interest in their young as in any other juvenile norns, and the offspring themselves have no need for parental affection.

So, though I think norns are alive, I think it's fine to torture them, because they can't be traumatized. Sure, they can experience immediate suffering, but they experience immediate suffering when they are punished, when they try something that was a bad idea (eg eating rotting stuff) or when they do not address their own needs (eg not eating when hungry). I see no problem with norns experiencing immediate suffering at times.

No Words

2011-10-31T12:26:00.000-07:00

I wanted to make a post today. I have several different ideas for what to write about. But I can't find the words for any of them.

I'm feeling really depressed lately. Various things keep happening to bring me down. We moved away from the first friends I've made in 10 years and I don't think I know how to make new friends. I had a problem at one of my classes and now I'm not sure if I'll be able to pass it, and I know I need to figure out how to study for it but I don't know how to study and feeling despair over it just makes me want to escape. My Mom is stressed out about her new job and my brother is struggling with depression related to school issues.

And I feel at such a loss. I feel like I don't belong anywhere. Like none of my dreams will ever come true. I had a taste of something great and wonderful. I'd finally found my place in the world. And now I don't have that, and what I always made do with before is suddenly no longer enough for me. But I don't know how to get it all back.

So I keep searching for something to make me happy or at least distract me from my sadness. And it works for a bit, but it never seems to last. I wanted to enjoy Halloween, but my Dad hates any holliday in which he's expected to spend money. He claims we're running low on cash, but because he panics over every cost I have no idea if that's true or if it's just memories of starving at the end of the month as a child, coming back to haunt him. And everyone says I'm too old for trick-or-treating - I still want to trick-or-treat, but I'm scared that people will make their gentle teasing comments that cut me like knives. They wouldn't say that to a person with Down Syndrome, but no one can see that I have a developmental disability. And I've constantly been pressured to grow up before I'm ready, and missed out on things as a result. Only difference is now I know what's happening.

And I've always believed the future will be better. But now I don't know anymore. Maybe I shouldn't wish for things to get better for me anymore. Because if they get better and then it all goes away, it's worse than if I never had it.

I just feel so lost. I don't want to problem solve. I don't want to meet with my TA to talk about our conflict. I don't want to struggle yet again to convince my brother that he's a wonderful kid, even though he says it really helps him. I just want it all to stop. I want things to be better, without me having to work at it. Because I'm exhausted.

My Old Website

2011-10-30T20:05:00.000-07:00

I thought my old website had disappeared with Geocities, but recently I discovered that it's been mirrored by a couple of other sites. I'm no longer maintaining this site (I will be making a new website when I find the thermals for it, though I'm not sure if that website will have anything apart from Creatures stuff on it). However, some people expressed appreciation for my old website, so if you want to access it, try these links(note that some links may be broken, for example some of my creatures downloads won't download):

http://www.geocities.ws/ettinashee/

http://www.oocities.org/ettinashee/

Also be aware that the opinion pages reflect stuff I wrote when I was 15 or so, and some of my opinions have changed since then. For one thing, I'm much less willing to engage in personal attacks of people who disagree with me.

The Music Video I Lack The Skill To Make

2011-10-19T19:01:00.000-07:00

I wanted to make a music video for this song, but I have no idea how to animate and don't draw well enough to do it anyway, so instead I'll do what I'm better at - paint a picture with words.

Forgive, sounds good,
Forget, I'm not sure I could
They say time heals everything, but I'm still waiting

I'm sitting on the radiator in the Arts building at university, waiting for my class to start, and my mind travels back. I remember being a child, wearing a backpack, walking through the front doors of my school.

I'm through with doubt
There's nothing left for me to figure out
I've paid a price, and I'll keep paying it

Cut to a visual depiction of my heart, with a number of old, healed scars all over it. The image fades and you see it with a single, open wound.

I'm not ready to make nice
I'm not ready to back down
I'm still mad as hell
And I don't have time to go 'round and 'round and 'round
It's too late to make it right
Probably wouldn't if I could
'Cause I'm mad as hell,
Can't bring myself to do what it is you think I should

Cut to myself as a child, crawling on the floor, washing my face like a cat. A teacher comes up and yanks me to my feet, yelling at me. I pull free and dive under a table. She reaches under and drags me out by my arm, kicking and screaming. Then cuts to my heart, with a new wound in it.

I know you said, can't you just get over it?
It turned my whole world around, and I kind of like it

I'm standing in front of a teacher lecturing me, I turn into a big circle and she tries to jam me into a square hole, getting enraged when I won't fit. She gives me a saw and tells me to cut myself down to the shape I need to be, but I throw the saw on the ground.

Made my bed and I sleep like a baby
With no regrets and I don't mind saying
It's a sad sad story when a mother will teach her
Daughter that she oughta hate a perfect stranger

A teacher screaming at me in front of an entire classroom of kids as they watch in shock. Later, in recess, several of them grab my backpack and throw it back and forth, keeping it away from me. I finally catch my backpack and get into a tug-of-war, and then hit the kid to make him let go. Next it cuts to me in the principal's office.

And how in the world can the words that I said
Send somebody so over the edge?
That they'd write me a letter
Saying that I better
Shut up and sing or my life will be over

My teacher goes to the principal and hands in some papers, then points to me. She leaves and is immediately replaced by another teacher. It cuts to me standing there, with an arrow pointing at me saying 'drove her teacher to an early retirement', standing at the Pearly Gates and getting turned away. The scene cuts to my heart with another wound in it.

I'm not ready to make nice
I'm not ready to back down
I'm still mad as hell
And I don't have time to go 'round and 'round and 'round
It's too late to make it right
Probably wouldn't if I could
'Cause I'm mad as hell,
Can't bring myself to do what it is you think I should

A math page with easy division problems. An example problem is already solved using long division. A teacher's hand draws out the long division half-square thingy and points to it. Ignoring it, I write the correct answer for problem #2 next to the problem. The teacher puts an X beside it and points again to the half-square thing. The words 'show your work' appear on the page. I grab the page of problems, crumple it up, and throw it away. Then the scene cuts to my heart with yet another new wound.

I'm not ready to make nice
I'm not ready to back down
I'm still mad as hell
And I don't have time to go 'round and 'round and 'round
It's too late to make it right
Probably wouldn't if I could
'Cause I'm mad as hell
Can't bring myself to do what it is you think I should
What it is you think I should

I stand there looking at God in His fluffy cloud heaven, and it pops out of existence. The scene cuts to me standing outside of church shaking my head to my family as they urge me inside, they nod acceptance and walk in without me. At school, a teacher tries to make me pray and when I yell at her she yells back awhile, then turns and prays with a pious-yet-condescending look. God pops in the room and stands before me, and I scowl at Him and turn away. Cut to my heart with a new wound.

Forgive, sounds good
Forget, I'm not sure I could
They say time heals everything
But I'm still waiting

Returns to adult-me sitting on the radiator. A girl in a motorized wheelchair approaches and my face lights up as I greet her. Placing a hand on one handle of her wheelchair, I follow her through the door to my class.

Why Can't It Be Like This?

2011-10-17T05:02:00.000-07:00

Imagine this for a moment. I don't have a disability. Instead, you (assuming you're NT) have superpowers.

You have the power to rapidly and intuitively analyze a person's facial expressions and figure out exactly what they're feeling. It's a subtle power, but it's pretty amazing, because it means you can make a very accurate guess at someone's emotions without them even saying a word. And from a lifetime of having this power, you've learnt how to say and do things just right to get the reaction you want out of people - not all the time, but often enough to count.

You also have supernatural agility and coordination. When a ball goes flying in your direction, you can catch it in midair. And then you can throw it and have a reasonable idea of where it'll end up, more precise than 'to my left somewhere'. With some practice, you might even be able to throw a ball through a hoop, or pass it to another similarly-gifted person. Furthermore, you can look at someone doing a movement and imitate it reasonably well, without needing detailed instructions as well. And once you know how to do something with your left hand doing role A and your right hand doing role B, you don't need any instruction to switch which hand does which task. You don't need to figure it out all over again. And you don't get tired very easily, either. At the end of a long day. you can still walk smoothly and easily, unless you decided to have a few too many drinks.

You also have this small but incredible power to tell the time without needing a clock. Sure, a clock is more precise, but you'll be a half an hour off at most. You don't faint at 2:30 because you didn't realize it was past lunchtime. Instead, when someone comes up and asks the time, you might answer without digging out your watch, or if you do dig it out, it'll be to adjust your estimate or check it's accuracy. You might even have the ability to tell time in your sleep, so you awaken just before the alarm clock goes off.

You also have super senses. Not that they're any sharper - in fact, they may actually be less acute - but you can tune out the irrelevant. And a fire alarm doesn't paralyze you. In fact, you might even be able to help someone less fortunate to escape the fire. Your ability to withstand sensory bombardment is so impressive, you can actually enjoy musicians playing at full volume in a large building packed to the brim with people. Not only doesn't that experience leave you hiding in a corner rocking and covering your ears, you actually enjoy it!

But you know what they say - with great power comes great responsibility. Now, your powers aren't particularly great, but at the very least, you're expected not to misuse them. Your ability to understand emotions, in particular, is easy to cause harm with. You could convince someone to trust you, then set them up for a fall. You could tailor your insults to hit precisely where the person's self-esteem is poorest, so you really devastate them. You can gather allies so your victims have no one to turn to. But you're not a villain, so you won't do that. Instead, when you see others with similar powers misuing them, you'll jump in and stop it, right?

And most importantly, you won't put yourself above the people who don't have superpowers. Because superpowers don't make you a superior person, and you know that.

What Am I Missing?

2011-09-28T16:50:00.000-07:00

It's a very strange feeling reading blogs by psychopaths*. As an autistic person, I've gotten quite sick of my people being compared to psychopaths, simply because researchers made the unfortunate choice to use the phrase 'lack of empathy' to describe both groups, even though they're talking about an emotional difference in psychopathy and a communication difference in autism.

But even though I'm nothing at all like a psychopath, I keep resonating with what they say.

SociopathWorld has a blog entry titled A Prosthetic Moral Compass? in which the author poses a question to other sociopaths - if there was a cure for sociopathy, would you take it? (He mentions the cochlear implant controversy, and in other blog entries he's talked about the autistic rights movement as well.) The following reply looks like it could have been written by an autistic person just as easily:

"But seriously, would you change if you could? I wouldn't, not today although that hasn't always been true. When I was much younger I really hated it a lot and would have gladly changed and tried to do so. But today I am done with all of that and quite happy with who I am and what I do to people."

If I could cure my autism, there's no question about it. I would refuse. Amanda Baggs once said (unfortunately I couldn't find the quote) that for her, the times when she wanted a cure were the same times that she was suicidal. Dying and being cured would both involve destroying who she is.

It seems many psychopaths feel the same way. Another psychopathic blogger, Zhawq, shows on his blog a gradual evolution from denying that he's a psychopath and trying to prove his diagnosis incorrect, to accepting that his diagnosis is accurate, to challenging some of the mainstream ideas about psychopathy. This evolution is something I've also seen in many autistics, including myself (though my acceptance of autism predated my actual diagnosis, it came after others had suggested I had a neurodevelopmental disability).

So I can understand how they feel. But on the other hand, I'm a victim of abuse. Though my abusers were most likely not psychopaths, they did things that psychopaths are statistically more likely than non-psychopaths to do. I have seen in myself the damage this caused. And when I read accounts by people who were hurt by psychopaths acting psychopathic, I can understand how they feel as well.

If I were a psychopath, it would be easy for me to decide that since morality doesn't make sense to me, it's not really important. I've certainly felt that way about many other things, such as sexuality or embarrassment, that I don't feel the same innate drives around as others do. And I can understand the resentment that comes from everyone else insisting something is important that you don't see the need for. And it's not like people's philosophical ideas about what differences are acceptable and what differences aren't changes the feelings that growing up different provokes in people. We all travel down the same paths, whatever the specific symptoms our differences cause. We see the options of 'sick' or 'bad' and we don't like either one, neither of them gives us the self-respect we need. In that way, psychopaths and autistics aren't so different after all.

And yet - what about the people who are hurt by psychopaths? I can't forget them, either. And I can't see how to compromise between the need for all neurologies to be accepted and the need to protect people from abuse.

And all this makes me wonder. Is there something autistics don't see as important that is as central and important to non-autistics as morality is to non-psychopaths? That thought makes me worry. Certainly, there seems to be a sticking point for many non-autistics when they encounter the autistic rights movement, but I've never gotten a clear sense of what it is.

* I use 'psychopath' and 'sociopath' synonymously. Many people, including many who are described or describe themselves by either term, see a distinction between the two, but it seems to me that everyone who describes a difference between the two draws the line differently. Same sort of situation as Asperger Syndrome versus High Functioning Autism, and I'll do the same thing as I do there - use one term for both categories.

Demand Avoidance and Executive Dysfunction

2011-09-16T13:27:00.000-07:00

I sort of feel like my demand avoidance and my executive dysfunction are in conflict.

If I had executive dysfunction without demand avoidance, I'd do best in a highly structured setting, where my lack of internal organization is compensated for by a great deal of external organization. I've heard this kind of thing commonly recommended for people with conditions that involve executive dysfunction, such as autistic people, ADHDers, etc. And it often works.

But my demand avoidance makes me intolerant of structure. I panic under too much structure. I start fearing that there won't be room to be myself. That I will lose my identity when everything I should do is laid out too clearly. Or that they'll make me do something that's wrong, and I won't be able to stop it. I'm hyperaware of all the dangers of submitting to a high degree of external structure - a high degree of external control.

If I had demand avoidance without executive dysfunction, I'd do best with no structure at all. I've read that entrepreneurs often hate external structure, and that's why they strike out on their own. But I could never be an entrepreneur, because I'm too disorganized. If I tried to start a company I'd chatter to everyone about the company, take the first couple steps of starting it and then get bogged down and give up on it. Being an entrepreneur requires good executive function, which I just don't have.

When I'm in a completely unstructured setting, I do better than in a highly structured setting. I don't panic, and I can get some constructive things done in an 'accidental' sort of way. But I don't perform to my potential. I don't achieve many things that I could achieve.

So, it's a balancing act. Give me only as much structure as I'm capable of tolerating, and be careful to add the structure in the parts that count the most. And I'll do the constant mental negotiation. 'Can I fit myself into this role without sacrificing too much?' 'Can I tolerate this or is it going to trigger a crisis?' If you don't overdo the structure, I won't panic and reject it all. But it's a balancing act, like trying to pet a timid cat. Don't come too close, don't act threatening, or the cat will bolt.

I'm lucky. The average university seems to have just about the right amount of structure. After having to leave school because no one would consider any less structure than far too much, I've finally found a place where I can fit myself in the gaps. It's not perfect, but if I'd been taught university-style since childhood, I probably wouldn't have needed unschooling.

Two More Emotions I Don't Seem To Have

2011-09-11T07:14:00.000-07:00

I've mentioned that I'm asexual. Recently I was realizing that there are other emotions that most people feel and I don't seem to feel.

Embarrassment is one. I've never blushed, and from what I've been told blushing is easy to see in someone of my complexion. I've heard people talk about how they 'wished the floor would swallow them up' or something like that. When I've wished stuff like that, I was terrified, not embarrassed.

And in fact, I often seem to feel fear where others would feel embarrassment. This is probably due to bullying. If I do something most people would find embarrassing, it wouldn't normally bother me, except that I've learnt that other people are likely to treat me badly in reaction to it. (Ironically, my fear laugh tends to show up in situations where I feel threatened by another person, and probably some people have mistaken it for an embarrassed laugh.)

This study describes a protocol for eliciting embarrassment experimentally. They asked participants to sing, karaoke-style a popular song, and told them that two confederates would be viewing their performance. Then they played back a video that alternated between the professional performance of the song and their own performance of it, while monitoring heart rate and blushing, and afterwards asked participants to rate how they felt when they saw their own singing.

I often sing to myself in public. I tend to sing below audibility of others, because people give me an odd look if they hear me and this odd look reminds me of the way bullies would often look at me. But in a situation where I don't expect others to do anything to hurt me, I'll happily sing audibly. I'll even sing to a friend despite strangers being able to hear me easily, because friends are protection from bullies.

I also tell people incredibly personal things immediately upon meeting them. I've consciously curtailed this because some people have treated me badly up[on finding out certain things, but I don't seem to feel an instinctive need for secrets like most people do. If I knew no one would abuse me for it, I'd happily tell the entire world every thought and feeling I'd ever had. I do have a need for physical privacy (I don't want anyone to see me in the bathroom) but not for emotional privacy. I suspect this is linked to lack of embarrassment.

I wouldn't be surprised if lack of embarrassment is common among autistics. It could explain a lot. One big difference between autistic and NT kids is that NT kids have many activities they will do alone, but not in social situations, while autistics will often do those same things in full view of others. Things like scratching yourself in private places, picking your nose, etc. In addition, besides autistics actually having different interests and behaviors than others do, we probably seem even stranger because we're less likely to suppress an action that no one else does. Many times I haven't paid enough attention to others to realize a certain action is atypical, other times I just don't care.

Once, in the middle of summer, I had a rough day in large part because I walked outside a lot in windy weather (wind blowing my hair around is a very unpleasant sensation for me). I got home to find that the power was out and I didn't have any books to read. So I decided to walk to the library. But I was sick of wind in my hair so I decided to wear my parka with the hood up to block the wind. My Dad, driving home from work, spotted me and called out to me. He said he'd recognized me easily because of the parka - 'there's only one person I know who'd wear a parka in this weather'.

If you'd asked me whether it was normal to wear a parka in the middle of summer, I'd have said no. But it didn't occur to me that I'd be the only one doing it among a large social group. I also didn't think about what others might think if I walked outside in summertime with a parka on - what mattered was that, for me, excess heat was preferrable to more wind.

As for the other emotion I've noticed recently...

I don't think I feel hatred. I remember some people on a forum awhile back, saying that 'everyone has probably wished someone would die'. When I said I'd never wished that, they accused me of lying and pretending I was better than everyone else. But it was actually the truth. The closest I've come to a revenge fantasy was a fantasy in which I turned into a dog and mauled one of my bullies, and he got a permanent disability and his 'friends' turned on him and started bullying him too, and being bullied made him realize how bad it was so he turned nice and befriended me (not knowing I was the dog, of course).

I have said 'I hate you!' in the course of a meltdown. At that exact moment, I really do feel something similar to hatred. But the feeling disappears once I calm down. I've never hated someone in an enduring sort of way. I'm not sure if I've felt angry - most of the time when people think I'm angry, I'm really scared. But I think I have felt anger over injustice that doesn't personally affect me (therefore triggering no fear).

I was sexually abused by two cousins of mine. Most people, if they'd gone through something like that, would hate those two cousins. If they didn't, they'd hate my uncle, the one who screwed those kids up and made them into abusers (probably deliberately - he liked to corrupt people). I don't hate any of those people. Most people would also hate my first grade teacher, the worst teacher I've ever had. I have no idea why she treated me the way she did, and I would never trust her with a child, but I don't hate her. My emotions, when I think of her, are a muddle of fear, sadness, confusion, hurt and shame, but no hatred. Same with the bully featured in the revenge fantasy I described above. If he'd have said sorry for what he did and started treating me nicely, it's entirely possible that me and him could have become friends.

This doesn't mean I don't take revenge, but, as my revenge fantasy shows, it's always directly tied with the hope of changing the person I'm avenging myself on. If I realize my revenge-taking won't change them, the desire for revenge disappears. This is why I don't support our jail system - because it doesn't change people for the better. I find it very hard to understand why some people seem so determined to punish wrongdoers that they'd ignore anyone who tries to convince them that this doesn't work. Clearly, this is not just a rational attempt to prevent further crime. There must be an emotional component to it that I don't feel.

Note: I do not think my lack of hatred (or embarrassment, for that matter) makes me better than anyone. We can't help what we feel. It's what we do with our feelings that really matters.

Explaining Remorse

2011-09-08T15:42:00.000-07:00

This is in reply to Zhawq's post How Psychopaths Understand Remorse. Zhawq is a psychopath who maintains a blog aimed at helping people understand psychopathy better. Anyway, in that post he asked non-psychopaths to comment on what remorse feels like. My response was too verbose for the comments thing, so I'm posting it here:

When I feel remorse, it's basically that part of me feels like I've stepped into the shoes of the person I hurt, and I'm feeling their pain and thinking about how they'd see me, and meanwhile I'm comparing all that with what kind of person I'd like to be and seeing that this particular action falls short of it.
For a specific example - I volunteer with disabled kids. Once, I was working with an autistic girl, taking her swimming as part of an activity program. For the first two days (in two separate pools) she swam happily, but the third day she refused to get in the water. I felt sure that as soon as she got in she'd enjoy it, so I was pushing her pretty hard. Finally I suggested to the other volunteer that we just pick her up and toss her into the water, and the other volunteer said she thought that would be wrong. So I gave up on getting the girl in the water and just let her draw on some paper instead.
Later, thinking back on that, I was horrified by my suggestion. I thought about how I'd have felt about a teacher forcing me into the water after I'd made it clear I didn't want to go in, how scared and angry and helpless I'd feel, especially if (like this girl) I didn't have the verbal skills to express my feelings. I thought about the teacher who have done things to me against my will (like dragging me out of hiding spots) and how I felt about that. And I thought about what kind of teacher I wanted to be and how I wanted the kids I worked with to feel about me and about themselves, and what I'd contemplated wouldn't fit with that at all.
But it's not just thoughts. All of this brings up intense emotions. I feel disgusted by myself, I feel ashamed, I feel sad and mixed up inside, etc. The day afterwards I felt out of sorts all day, until I'd confessed to my parents about this and decided that next time I'd apologize to the autistic girl (unfortunately her parents pulled her from the program because they'd mostly expected her to enjoy the swimming and she wasn't enjoying it).
It's hard to describe, I know exactly how it feels but I have no idea how to convey that to someone who doesn't feel that particular feeling. Kind of like when others try to describe sexual desire to me (I'm asexual). I really don't get how sexuality feels, I just get enough to realize it's something I don't feel. I'm guessing it's similar for a psychopath with regards to understanding remorse.
Also, with regards to things I can't help, I don't feel remorse about those. (Some other people do, but not me.) For example I have PTSD and mild autism and both of those combine to cause meltdowns when I'm upset or overwhelmed. Something will set me off and I'll start screaming, accusing my parents of not caring about me, threatening to hurt myself, sometimes even shoving or hitting my parents. I don't feel remorse for doing this. I wish it didn't happen, but I have no control over having meltdowns and given that I'm having a meltdown I generally choose the best course of action I was capable of. I know it hurts my parents when I do this and I'd like to figure out ways to avoid doing it for their sake, but I don't feel like a bad person for doing those things and I don't feel the strong compulsion to make up for it in some way. (Mostly I just want to forget about it because my meltdowns are far more unpleasant for me than for others.)
I hope this clarifies things somewhat. I'm not exactly normal in my emotional experience, but I'm certainly not a psychopath. (My guess is I'm actually less psychopathic than most people, because I don't seem to feel enduring hatred even for people who've hurt me deeply, such as the ones who caused my PTSD. This trait is probably partly why I'm trying to understand psychopaths instead of just calling them bad.)
Oh, and lastly - why I'd do something I consider immoral? Because I'm not perfect and I don't always think through the implications of what I'm doing at the moment. It's not always obvious as I'm doing something that it's something bad, it's only on reflection later that I realize it.

Down Syndrome - Not Just a Control Group

2011-08-29T09:04:00.000-07:00

In many studies of various developmental disabilities, one of the most common control groups used are people with Down Syndrome. I've read countless studies comparing the social skills of autistic kids to those of kids with Down Syndrome - either matched by language skills or general cognitive skills. The book Journey From Cognition to Brain to Gene, which focuses on Williams Syndrome, describes almost as many subjects with Down Syndrome as it does Williams Syndrome.

All of these studies are based on the assumption that Down Syndrome is a good control group. In other words, that DS individuals mostly differ cognitively from neurotypicals only by having a lower IQ. That they don't have their own quirks specific to Down Syndrome, which make them differ from others with cognitive disabilities.

This is not true.

Down Syndrome individuals generally have a relative weakness in verbal skills, specifically verbal short term memory (which raises questions about using them as a control for research into the verbal strengths of Williams Syndrome) and a relative strength in social skills (making them a poor control for autistic kids, especially when you pair them on verbal skills, a weakness for both groups). They also tend to have a strength in adaptive behavior, which means they typically have more independence than their IQs would predict.

They also tend to have certain temperament features. Although the stereotype of DS children as sweet and well-behaved doesn't necessarily fit, and every DS individual has their own personality, certain traits are more often present. They tend to show less intense moods, more positive mood and adapt better to change. And one trait can be seen in early childhood that is very unusual - a certain reaction to learning situations. Whereas NT babies will try hard at a task, whether it's too easy for them, just right, or too difficult for them, DS babies only seem to try their best at tasks that are just the right difficulty. Tasks that are too easy or too hard are avoided, by use of social behaviors such as requesting an adult's help or trying to interact with the adult. In fact, very young DS infants often show cognitive skills at similar levels to NT children of the same age, but because they tend not to practice already-learnt skills, they lose those skills are have to relearn them over and over.

All in all, DS individuals have their own quirks, just like other genetic syndromes do. So why do we use DS as a control group when we wouldn't think of using Williams Syndrome or Fragile X Syndrome as a control group?

I'm not saying we should stop using Down Syndrome individuals as a control group for research into other syndromes. But we should always keep in mind that DS has it's own distinctive phenotype, and that may obscur or amplify the differences being studied. I'd especially be concerned about pairing a strength with a weakness, as occurs when Down Syndrome and Williams Syndrome individuals are paired for language tasks, or autistic and Down Syndrome individuals are paired for social tasks. And Down Syndrome shouldn't always be the first choice for a control group. Fragile X Syndrome is another common genetic syndrome that causes cognitive impairment, and for some tasks they may make a better control than Down Syndrome. At the very least, if Williams Syndrome individuals differ from both DS and Fragile X in similar ways on similar measures, we know it's more due to Williams Syndrome than their comparison group.

And for those people actually working with Down Syndrome individuals, trying to help them achieve to the best of their ability, it's important not to just assume that they'll do best with the same techniques used for all cognitively disabled people. Instead, they should look into techniques that address the unique features of Down Syndrome, such as errorless learning for their motivational quirks, or visual communication techniques such as reading or sign language to support their relatively poor verbal skills.

Indeed, it may turn out that there is no such thing as a mind that works just like NTs but learns at a slower rate. Perhaps every child with a cognitive disability has their own unique learning style that is drastically different, and generally less efficient, than the typical NT style. If we understand these learning styles we may get a lot more success in educating these children.

Factor Analysis of Newson Syndrome Traits

2011-08-25T19:21:00.000-07:00

This is another analysis involving the same survey I was analyzing in this post. This one is a factor analysis of the characteristics asked about in the survey, to see if Newson Syndrome traits load on a single factor.

Firstly, I selected all those symptom questions that at least 90% of the sample answered, and did a factor analysis on them. The analysis showed 8 factors (italicized items loaded more strongly on a different factor):

Factor 1: acts incapable to demands (.740), tantrums to demands (.698), impulsivity (.646), makes nonsense sounds or interrupts to demands (.599), distracts to avoid demands (.559), aggression (.505), other demand response (-.464), distractibility (.405), unaware of other people's feelings (.312) and hyperactivity (.308)
Factor 2: doesn't want friends (.752), uses facial expressions (-.626), makes eye contact (-.612), seldom feels part of group (.506), uses gestures (-.356) and unaware of other people's feelings (.323)
Factor 3: complies to demands (.565), uses gestures (.533), other demand response (-.458), aggression (-.475), plays pretend (.408), hyperactivity (.404) and refuses to speak to demands (.315)
Factor 4: refuses to speak to demands (-.648), fantasy to demands (.428), hyperactivity (.417), distractibility (.397), echoing demands (.365), seldom feels part of group (-.353), and complies to demands (.316)
Factor 5: plays pretend (.668), fantasy to demands (-.595), unaware of people's feelings (.420), distractibility (.365) and distracts to avoid demands (-.311)
Factor 6: echoing demands (.700), hyperactivity (-.461), makes nonsense sounds or interrupts to demands (.324) and unaware of other people's feelings (-.302)
Factor 7: excuses self from demands (-.494), doesn't want friends (.369), makes nonsense sounds or interrupts to demands (.354), makes eye contact (.328), distracts to avoid demands (-.319) and uses gestures (.307)
Factor 8: unaware of other people's feelings (.452), uses facial expressions (.401), excuses self from demands (.367) and complies to demands (.343)

Similar to my last foray into factor analysis, this one spat out several factors that don't make much sense. However, Factor 1 looks like mostly demand avoidance, and Factor 2 is clearly social impairment.

Of the characteristics mentioned as PDA symptoms, it appears that pretend-related symptoms don't correlate all that strongly with demand avoidance.

Unity - They Do Have a Point

2011-08-23T05:32:00.000-07:00

One thing that curebies often say to autistic self-advocates, when we criticize their advocacy efforts, is that we need 'unity'. We're all dealing with autism, they say, so we should stand together.

This comment generally enrages the self-advocate. 'Why should we unify with you when you won't listen to our concerns?' We say. 'Your advocacy efforts are doing more harm to us than good.' I know, that's what I've said myself.

And I still find the idea that we should ally with the likes of Autism Speaks ridiculous. It would be like LGTB rights activists allying with Exodus International, just because they're all dealing with homosexuality.

But there is a grain of truth to that statement, and that is that most people don't disagree on everything. And when you find an area that you agree with a person, it's no contradiction to stand in support of them on that issue - even if you disagree with other opinions they hold.

I attended an autism conference awhile back, where one of the presenters was doing a major sell job for ABA. I found his attitudes and his practices despicable, particularly how he reacted to an actual autistic person trying to question his treatments (he simultaneously claimed I was obviously not autistic based on five seconds of interaction, and claimed that I couldn't judge his ABA program based on watching him present about it for 2 hours!). And the chairwoman of the conference seemed to be practically in love with him, and wanted everyone to fawn over him like she did. I got a pretty poor opinion of her from that conference.

But then I saw her as a speaker in a different conference, a conference on inclusion. There, I heard her talk about how the school called her to tell her it had taken three adult men to restrain her son, when she had specifically told them never to restrain him. She talked about how violence is not acceptable in the management of disabled children, how she wanted her son to feel safe in his school. And I came up to her afterward to talk about how much I appreciated her saying that, and how the teachers in my school used to drag me out of hiding places by my arms, holding me hard enough to hurt.

I can stand by that woman when she speaks out against restraints, and our voices will be louder for being together. And there's no contradiction between that and standing against her when she supports cure-directed ABA and the attitudes that go along with it.

Multiple Complex Developmental Disorder and Newson Syndrome

2011-08-20T09:37:00.000-07:00

Several years ago, I made a survey to study Newson Syndrome. I've finally gotten all the data entered and have started analysis.

Firstly, the background data:

The survey was filled out about 96 people. Of those, 80 were the children of the respondants, 4 were students of the respondants, 9 filled out the survey about themselves and 3 had other relationships to the respodants (only one of those three, a grandparent, indicated the nature of their relationship). There were 64 boys and 32 girls. There were 12 with a diagnosis of Newson Syndrome, 22 with other autism spectrum conditions, 3 with autism and oppositional defiant disorder, 3 with autism spectrum and ADHD, 3 with learning disabilities, 2 with ADHD, 1 with ADHD and conduct disorder, 3 with ODD or CD, 2 with schizophrenic spectrum conditions (1 of whom was on the autistic spectrum), 1 with OCD, 11 undiagnosed and 33 left the diagnosis question blank. Only 76 entered the age of the person, with the age ranging from 3 to 61 years (average 12.23 years, SD 10.12 years).

I got criteria for the autism spectrum and Multiple Complex Developmental Disorder from Buitelaar and van der Gaag (1998). Only 18 provided enough information to classify them according to both criteria, of which 5 had both autism and MCDD, 6 had autism without MCDD, 1 had MCDD and not autism and 6 had neither. I grouped the MCDD kids together into one group.

Then I did a one-way ANOVA, and found the following significant results (note that age did not differ among the three groups):

MCDD individuals were more likely to be female than non-MCDD autistic individuals (4 girls and 2 boys with MCDD versus 6 autistic boys)
MCDD individuals were more likely than individuals in either other category to use speech for purposes other than communication
non-autistic, non-MCDD individuals were more likely to show interest in transportation devices such as cars or trains than either other group
MCDD individuals were more distractible than other autistic individuals

Do Psychopaths Know Right From Wrong?

2011-08-11T17:27:00.000-07:00

Apparently, a common question asked about psychopathy is 'are psychopaths criminally responsible? Do they know right from wrong?'

The experts all agree that psychopaths are criminally responsible. They understand that they are breaking the law, and they know that the justice system punishes that behavior. But what a lot of people overlook is that knowing legal from illegal is quite different from knowing right from wrong.

Intuitively, the majority of people get the distinction between illegal and wrong. They know something can be illegal but not wrong (eg stealing a loaf of bread when you're starving) and that something can be wrong but not illegal (eg pretending to be someone's friend so you can set them up for humiliation).

Psychopaths don't get this distinction. Fisher & Blair (1998) did an interesting study into children with psychopathic tendencies. Boys (8-16 years old) at boarding schools for children with emotional/behavioral difficulties were divided into two groups - psychopaths and non-psychopaths - based on their scores on a questionnaire filled out by their teachers. Each child was told stories about a character breaking the rules. Four of these stories involved harm to another person, such as an aggressive act or the destruction of other people's property. The other four were things like walking out of class halfway through or talking while the teacher is talking. Both psychopaths and non-psychopaths agreed that each story involved someone doing something wrong. Then they were told that one day, the teacher said that the particular behavior was OK. On that day, would that behavior be morally permissible?

Here's where the difference showed up. Non-psychopaths said that hurting others or destroying property was wrong, even if the teacher said it was OK, but that things like walking out of class or talking in class were only wrong if the teacher had a rule against them. Psychopaths made no such distinction - if the teacher said it was OK to hit your classmates, they thought it was OK to hit your classmates.

And it's not just that they don't care about right and wrong, or have an unconventional moral code. Blair (1995) administered the same test to adult violent criminals (mostly murderers) who scored high or low on psychopathy. Unexpectedly, many of the psychopaths said that harmful actions were still wrong, even if they weren't against the rules. But they said the exact same thing about the non-harmful rule infractions as well. These psychopaths, in hopes of getting parole, were trying to present themselves as reformed. But even when they tried to fake morality, they still didn't get the basic idea. They didn't understand what made hitting someone different from leaving class halfway through.

I don't think psychopaths choose to be bad instead of good. Instead, I think psychopaths don't understand what 'bad' and 'good' actually mean. Not that this means we should tolerate their behavior - it's important to protect victims whether or not the perpetrator understands what they're doing. But there's a difference between stopping someone from doing harm and condemning them for bad choices. I really don't think psychopaths have a choice about being bad, because in order to chose not to be bad, you need to understand what 'bad' is. The world must be confusing to them, with people shrugging off some things and getting very upset about other things, when those things really don't seem all that different.

Theory of Mind Test online

2011-08-11T08:41:00.000-07:00

As far as I know, there are no online tests of Theory of Mind, so I decided to make one. It's available here.

Theory of Mind is basically the idea that other people have minds and that people, in interaction with each other, will try to figure out what other people are thinking and manipulate those thoughts by what they say. For example, they may decide to lie in order to cause another person to believe something that isn't true.

One major theory in autism research is that autistic people have difficulty with theory of mind. They may completely lack any idea that other people have thoughts, or they may be slow to learn this and have difficulty figuring out how this works.

This test is a multiple-choice version of the Strange Stories test, a relatively advanced theory of mind test designed for older adolescents or adults on the autistic spectrum. You can administer it to younger children, but be aware that even NT kids may score in the impaired range if they are 8 years old or younger. You can either answer the questions yourself or get your child to answer them by reading the question and answers to them.

Accuracy of Autism Self-Diagnosis

2011-08-08T08:58:00.000-07:00

This was inspired by my previous post using data from the Wrong Planet discussion forum. I noticed that a large chunk of my sample were self-diagnosed, and that these individuals scored no differently on a self-report measure of empathy than the officially diagnosed respondents. However, I had a small sample size, especially when splitting into groups, and the test I was comparing them on wasn't a diagnostic test for autism spectrum conditions.

But that gave me an idea, and I found another Wrong Planet thread, a stickied thread where a poster had linked to several online tests useful for self-assessment of autistic traits. Overall, 237 people (myself included) had posted their results on at least one of these tests, including 63 diagnosed with Asperger Syndrome, 20 with other autism spectrum conditions, 76 self-diagnosed Aspies, 65 who were unsure if they were on the spectrum or not, 11 with a family member on the spectrum and 2 neurotypicals. (The latter two groups were put together for further analysis.) There were 101 males and 136 females, similar to the gender ratio in my previous study. All the groups had similar gender ratios.

The tests taken were the Broad Autism Phenotype Questionnaire, the Autism Spectrum Quotient, the Empathizing and Systemizing Quotients, the Emotional IQ Test, the Highly Sensitive Person test, the 'Reading the mind in the eyes' test, the Cambridge Face Memory test (the link is broken), the Aspie Quiz, the Asperger Syndrome Self-Assessment test and the Toronto Alexithymia Scale. Of those 10 tests, 5 directly assess for autistic traits, 2 test for social skills but not other aspects of autism, and the last 3 assess conditions that commonly co-occur with autism.

A one-way ANOVA found significant differences between groups on the BAPQ aloof and pragmatic scales, ASQ, EQ and Aspie Quiz. In all of those cases, this difference was due to the family/NT group scoring as less autistic than the other groups. In most cases, all four autistic/possibly autistic groups scored significantly more autistic than the family/NT group, with the exception of the BAPQ pragmatic scale in which only the diagnosed Asperger Syndrome and the self-diagnosed group's differences reached significance (these groups also have the largest sample size). None of the other four groups showed any significant differences with each other.

Then I decided to see which percentage of individuals in each group met cutoff scores on the various tests.

The BAPQ is designed to assess the broader autistic phenotype, rather than autism spectrum conditions. As a result, the cutoff scores (89 for aloof, 81 for rigid and 79 for pragmatic) simply determine whether or not the person has a genetic predisposition to autism, and not whether they're autistic. However, autistic people would be expected to score quite high on this scale, and so they do (group differences almost significant at p=.073):

diagnosed AS: 87% meet cutoff on all three scales, 4% on 2 scales and 9% on one scale only
other autistic: 89% meet cutoff on all three scales and 11% on only 2 scales
self-diagnosed: 91% meet cutoff on all three scales, 4% on 2 scales and 1% on one scale only
unsure if autistic: 88% meet cutoff on all three scales, 10% on 2 scales and 2% on one scale
family/NT: 67% meet criteria on all three scales and 33% meet criteria on none of the scales (sample size of 3)

The ASQ is a test for autism spectrum conditions. Studies have shown that a cutoff of 32 shows good reliability in distinguishing autistic people from non-autistic people. This cutoff clearly distinguished the family/NT group from the others (p<.001, though the other autistic group fell short of significance):

diagnosed AS: 92% scored at or above 32
other autistic: 69% scored at or above 32
self-diagnosed: 95% scored at or above 32
unsure if autistic: 83% scored at or above 32
family/NT: 43% scored at or above 32

The Empathizing and Systemizing Quotients are based on the Extreme Male Brain theory of autism popularized by Simon Baron-Cohen. EQ is a measure of social skills and empathy, and SQ (the type used here is the SQ-R) is a measure of mechanical/scientific inclination. The ratio of EQ to SQ is used to classify individuals into four types - Extreme Empathizer, Empathizer, Balanced, Systemizer, and Extreme Systemizer. Autistic people usually score as Extreme Systemizers (family/NT differ from all other groups at p<.001):

diagnosed AS: 90% Extreme S, 3% S, 5% Balanced and 2% E
other autistic: 81% Extreme S, 13% S and 6% Balanced
self-diagnosed: 96% Extreme S, 4% S
unsure if autistic: 92% Extreme S, 6% S and 2% Balanced
family/NT: 50% Extreme S and 50% Extreme E (sample size of 4)

The Emotional Intelligence test was not designed to assess autistic people. Instead, it was designed in reaction to the observation that full-scale IQ has relatively poor power to predict lifetime success, leading researchers to suspect that another factor was important. It is designed to be normed like an IQ test, and therefore a score under 75 would be deficient. Between-group differences on this test were not significant(p=.498), with 40-70% of each group scoring below that cutoff. In general, it seems that autistic people tend to perform poorly on this test, but the effect is not very strong.

The Asperger Syndrome Self-Assessment had very low response rates, with 3 diagnosed AS, 1 other autistic, 1 self-diagnosed and 3 unsure if autistic participants filling it out. As a result, I will not analyze it further.

The Highly Sensitive Person test assesses a personality construct of high reactivity to physical and emotional stimuli. The stereotypical highly-sensitive person is highly empathetic and therefore not autistic, but the test taps many questions regarding sensory sensitivities and therefore autistic people are expected to score highly. The Cambridge Face Memory test assesses for prosopagnosia, an impairment in facial recognition. Prosopagnosia appears to be a common comorbid condition for autism. The Toronto Alexithymia Scale assesses alexithymia, an impairment in understanding one's own emotions (in contrast to the autistic impairment in understanding other people's emotions). Alexithymia is more common in autism spectrum individuals than the general population. However, only 5 respondents filled out the TAS, so I excluded it from further analysis. I assessed presence of the other two conditions, using a cutoff of 14 or above for the HSP test and less than 55% correct for the CFMT (differences between groups non-significant at p=.429 for HSP and p=.121 for prosopagnosia):

diagnosed AS: 94% highly sensitive, 22% prosopagnosic
other autistic: 93% highly sensitive, 30% prosopagnosic
self-diagnosed: 83% highly sensitive, 9% prosopagnosic
unsure if autistic: 85% highly sensitive, 6% prosopagnosic
family/NT: 67% highly sensitive, none prosopagnosic (sample size 3 for both)

In general, these results suggest that virtually all of the self-diagnosed and unsure if autistic groups probably are on the autism spectrum. But a single test does not determine this as well as multiple tests do. So I selected the three diagnostic tests with the best response rates - BAPQ, ASQ and EQSQ - and assessed how many scored in the autistic range on all three tests (above cutoff on all three scales of BAPQ, over 32 on ASQ and 'Extreme Systemizer'). Significant differences were found with a p=.037, post-hoc tests indicating that the family/NT group scored lower than all four other groups:

diagnosed AS: 84% scored 3, 8% scored 2, 4% scored 1 and 4% scored 0
other autistic: 67% scored 3, 8% scored 2 and 25% scored 1
self-diagnosed: 88% scored 3, 9% scored 2 and 3% scored 1
unsure if autistic: 70% scored 3, 23% scored 2 and 7% scored 1
family/NT: 50% scored 3 and 50% scored 0 (sample size 6)

So far, all results have suggested that self-diagnosed autistics, and even those who aren't sure if they're on the spectrum, generally score the same as people who were officially diagnosed with an autism spectrum condition. But most of these tests are self-report tests, and therefore do not necessarily indicate if others would perceive the self-diagnosed person as autistic. However, two tests in this bunch are objective performance tests - the Cambridge Face Memory test, and the Eyes test. The latter taps an area thought to be central to autism spectrum conditions, and showed no group differences.

Oddly enough, though, most of the participants, even those with official diagnoses, scored in the normal range or better on this test (22 or more correct), with 47% of diagnosed AS, 39% of other autistic, 28% of self-diagnosed, 32% of unsure and none (out of 2) of the family/NT group scoring in the deficient range. The average scores (22.03, 21.23, 23.65, 23.05 in the four autistic groups) are similar to the findings of Baron-Cohen et al (2001), and suggest that many high functioning autistics have too subtle of deficits for this test to detect. One possible alteration could be to make this test timed, as many autistic participants reported that this test took a long time to complete. (Also, a few reported giving up on the test because they had no clue about any of them, suggesting that some of the most severely-impaired participants may have been omitted from the test's analysis.) Another possibility might be to make it free response instead of multiple choice, since some participants said that what they thought was the correct answer was not even one of the options.

Ideally, I would like to run a study in which a large sample of self-diagnosed autistics were assessed by a team of psychologists experienced in diagnosing adult high-functioning autistics. However, this study suggests that self-diagnosed autistics - at least those on the Wrong Planet forum - score about the same as officially diagnosed autistics on a wide variety of tests. Contrary to the stereotype that self-diagnosis of autism is inaccurate, this study suggests that it's actually very accurate in the majority of cases. Undoubtedly some self-diagnosed autistics are not in fact on the autism spectrum, but so are some officially diagnosed autistics. And from what I can tell, the misdiagnosis rate is pretty similar between self-diagnosis and official diagnosis.

Autism and Types of Empathy

2011-08-06T18:31:00.000-07:00

fThis is another SPSS post. For this one, the data was gotten from a thread on the Wrong Planet forum, about this test (Word document) assessing four different kinds of empathy - Fantasy, Perspective Taking, Empathetic Concern and Personal Distress.

Twenty eight people posted their scores on the forum (including myself). One was excluded from this analysis because her profile described her as the family member of an autistic person instead of describing her as autistic. The remaining 27 were 11 males and 16 females (anecdotal observation suggests a more even gender ratio of autistic posters on forums than is found in epidemiological studies, probably suggesting that women are more likely to seek out an autistic community). According to their profiles, 8 were diagnosed with Asperger Syndrome, 4 were diagnosed with another autism spectrum condition, 8 were self-diagnosed autistics and 7 were unsure if they were autistic or not.

Firstly, the accuracy of self-diagnosis has been questioned, and the unsure individuals could turn out to have conditions other than autism as well. So I compared diagnosed to undiagnosed on all four subtests, and found no significant differences (fantasy p=.836, perspective-taking p=.740, empathic concern p=.188 and personal distress p=.699). In addition, a one-way ANOVA of all four diagnostic groups found no significant differences, though the 'other ASD' group was very small so this has limited accuracy.

Average scores for the whole group were (comparison scores in brackets taken from the thread):

Fantasy - 16.19+/-7.67 (average scores: 15.73 for men; 18.75 for women)
Perspective Taking - 9.85+/-7.06 (average scores: 16.78 for men; 17.96 for women)
Empathic Concern - 17.19+/-6.63 (average scores: 19.04 for men; 21.67 for women)
Personal Distress - 16.22+/-6.17 (average scores: 9.46 for men; 12.28 for women)

As the comparison averages indicate, men and women tend to differ on multiple subtests. So I ran a T-test comparing male and female autistics next. Only Fantasy showed a significant difference at p=.002, with women scoring higher (19.69 vs 11.09). This is consistent with Lord et al (1982)'s finding that autistic boys showed more stereotypic play than autistic girls.

Then I ran a one-sample T-test to compare the participants' scores to the previously-reported averages. For Fantasy, since it showed gender differences, I compared males and females separately to their own gender's means. For the others, I took the average of the two gender means for comparison. The results were:

Fantasy - male p=.068 (almost significant), female p=.778 (not significant)
Perspective Taking - p>.001 (highly significant)
Empathic Concern - p=.020 (significant)
Personal Distress - p>.001 (highly significant)

So, autistics score lower on Perspective Taking, somewhat lower on Empathic Concern and higher on Personal Distress. Perspective Taking deficit is described as a central feature of autism spectrum conditions, so that result is not surprising. While all other score correlations were non-significant, Empathic Concern and Perspective Taking scores had a correlation of .591 (two-tailed p>.001), which explains the lowered Empathic Concern scores. Higher Personal Distress is in contrast with the findings of Corona et al (1998), who found that autistic children showed less reaction to an experimenter banging her knee and acting distressed as a result. However, this could be due to differences between self-report and observation. Autistics often state that they often are unaware of another person's distress, but if they are aware of it, they react emotionally. So perhaps the autistic children in Corona et al's study did not realize the experimenter was distressed, while the respondents on this test were reporting on situations in which they knew there was a problem.

Oh, and incidentally, my own scores were Fantasy 25, Empathic Concern 19, Perspective Taking 12, and Personal Distress 25.

What's So Amazing?

2011-08-01T10:33:00.000-07:00

A lot of people, when they see someone calculate large numbers instantly in their head, or identify exactly which note was played just by hearing it, or draw a cityscape they saw only briefly from an airplane, they're amazed. And when they say so 'how did you do that?' the response is just a shrug. It was easy for them. They did it without thinking.

Have you ever been asked the time and guessed it before you looked at your watch? If you're like most people, you were probably within half an hour at most. If you wake up around 3 AM, you might even guess it's around 3 AM before you check the clock.

To me, time sense seems just as amazing as perfect pitch. Ask me the time, and unless I've just been given a major time cue, I could easily be two hours off. Talk to me, leave, and come back, and as far as I know you could've been gome 10 minutes or an hour. Wake me up in the middle of the night and act like it's morning, and I'll be puzzling over why I'm inexplicably tired.

But to most people, time sense is nothing. You don't even know how you do it. You don't do any mental strategies for it. I watch the clock on the computer, I set alarms, I wait for environmental cues, I start a TV episode so I'll know when it's done 30 minutes has gone by - ask me how I keep track of time, and I can tell you a bunch of things. None of which get me up to the level of performance of someone with a time sense.

It's the same with perfect pitch, instant arithmetic, or photographic memory. And what's going on is that some low-level, unconscious part of your brain devotes itself to just that task. You don't think about it, you don't know how you do it - all you get is the answer.

And it really isn't so amazing to you.

The Floaty Feeling

2011-07-25T06:12:00.000-07:00

There's a certain feeling I get, that I've never heard anyone else talk about. So I finally decided to describe it as best I can, even though I don't really have words for it.

I call it the 'floaty feeling'. It's an unpleasant feeling, I feel like the world's not real, like I'm not connected to it. It's a bit like being overloaded, but it's different from that. It's not painful and things don't seem more intense - instead they seem less intense. It's also different from being dissociated, because I don't feel stuck, and the flavour of the feeling is different. (Told you it's hard to put in words.)

What causes this feeling is certain kinds of writing. Virtually all poetry does it. Some prose does too. Just now I got that feeling from reading Expecting Teryk by Dawn Prince-Hughes (around a third or so of autistic writers seem to write in the style that triggers the floaty feeling). Something about reading that stuff triggers some unpleasant, strange feeling in my head.

It's hard to describe exactly what kind of writing triggers this. It's sort of filled with a lot of emotional impressions and very little description and action. (Dawn Prince-Hughes' other book, Songs of a Gorilla Nation, didn't do this to me as much, though I caught hints of the floaty feeling there too.) But it's not just a matter of focusing on emotions without description or action. For example, writing like the kind I'm doing here is focused on emotions, but isn't the floaty kind of writing. It's the way they write, like everything is a metaphor, and words are used for their feel as much as their meaning. I really don't know how to describe it.

In the summer camp for young writers I attended, there were several kids who only wrote poetry and not prose. The majority wrote both. I was the only one who wrote prose but not poetry. I can't write poetry, can't even stand to read poetry or hear it read, because it's so intricately linked with the floaty feeling (I wrote a 'song without music' when asked to write a poem in that class). I also noticed that the writers who only wrote poetry, when forced (as a class assignment) to write prose, their prose usually triggered the floaty feeling in me.

I'd love to go into an fMRI and make myself read some floaty writing, just to see what my brain is doing when I get the floaty feeling. (Then I'd want to read something else right away, because that's the best way to get rid of that feeling.) Maybe I could get a chance someday. But for now, I'm just left with my struggle at describing it, and a nonverbal knowledge of exactly how it feels.

The Highest Functioning 'Nonverbal' Kid I've Met

2011-07-13T06:18:00.000-07:00

I'm working in a new volunteering program. It's very similar to the last program, except that the kids are a lot higher functioning. Most are kids with ADHD, or else with specific delays in certain areas. Several are not officially diagnosed but suspected to have a disability.

The highest functioning kids in the other program would be in the middle for this program. And the lowest functioning kid in this program, a 10 year old autistic boy, would be average for the other program.

This autistic boy was described to me as 'nonverbal'. I've seen plenty of people refer to kids as nonverbal when they actually have a few communicative words, but this kid is the most verbal 'nonverbal' kid I've ever met. His speech seems to be at a 2 year old level - plenty of communicative words and phrases, but no sentences, and poor pronunciation. He doesn't seem to have any echolalia or receptive language issues.

Every other kid I've met who was called 'low functioning autistic' either had a very small vocabulary, or used considerable echolalia such that every statement made me guess what he/she meant to say. And most it was a puzzle to figure out how much they understood of what I said, and whether they were ignoring me or just not understanding me.

Not this kid. He's actually pretty obediant for an autistic kid, and it's very clear that he understands all the commands people have given him. And when he asks to do something, like 'go to church' (we meet at a church, go out to whatever place, then return there) he listens to your explanation of why it won't happen right away. And telling him 'in a bit' doesn't trigger a meltdown like it does with many kids I've met.

But to hear the program coordinators talk, he's badly off and getting worse. They base this mainly on how he acts at the end of the program, once he's tired and overloaded. He slams doors, slaps people, and flicks the lights on and off. Which isn't so bad, really. I've worked with a kid who, at the slightest delay in the action, would scream like a peacock and hit herself repeatedly in the head. I worked with a boy who, though he was a sweet boy most of the time, would scream and sit down and refuse to move, and pull your hair if you crowded him at all. Not that I found either of those kids particularly difficult, and both had their good moments as well. One big difference between those kids and this boy - when those kids were having meltdowns, there was no reasoning with them at all. This boy readily goes to time out if told (he actually seems to like time out, because it reduces stimulation).

They also seem to have a poor opinion of his parents. His sister is also in the program, and I've worked with her twice. She's diagnosed as high functioning autistic, but the program leaders think she's not really autistic, just reacting to her brother (I'm not sure myself, but she is a quirky kid). And I've heard them talk about how badly-behaved both children are at home, where they claim there is no discipline at all. I have no idea if this is true, but judging from the track record, I'm skeptical about anything the program coordinators say about this family.

I'm worried about this kid. I'm worried they'll decide this program isn't working for him, even though he's really doing just fine. I'm worried that poor expectations will bring worse behavior from him. I'm also worried because none of the volunteers seem to like working with him, and I'm worried he'll become the 'hot potato' kid.

Perception and Grief

2011-07-12T08:19:00.000-07:00

It's said in social psychology that if you want to understand a person, their perception matters more than reality.

Unfortunately, this has not been analyzed much in grief literature. You don't need to have experienced an objective loss to feel grief. All you need is to perceive yourself to have lost something. A good example would be the parent of a child with Down Syndrome, diagnosed at birth. Most such parents feel grief, even though objectively, they have not lost anything - right from conception, their child had Down Syndrome! But they expected and hoped for a non-disabled child, and are reacting to the loss of their dreams for this child. This will also be more or less devastating depending on their view of Down Syndrome and their personal values. For example, an academically oriented parent who places a high value on intelligence will be more upset about having a cognitively disabled child.

A clear example of this is in the book Mother Father Deaf, a qualitative study of hearing people raised by Deaf parents. They quote a Deaf woman describing how she realized her new baby could hear, and how she was horrified and grief-stricken by that realization. Most people would think deafness, not hearing, would be something to grieve in a child. But she perceived Deaf culture as very important to her values, and believed that a Deaf of Deaf child would fit into Deaf culture while a hearing child would be caught between two worlds.

Another example is when a child comes out as gay. Some people are accepting of gays, some are not. And if you read vignettes by parents of gays, a clear difference emerges in grief reactions.

"When I first learned of my son’s involvement in homosexuality, I cringed in disbelief, fear, guilt and shame. Stunned, I retreated from the world in deep confusion and great sorrow. Who could I tell? Who could possibly understand? My son, my only living child! Who understood the overwhelming and excruciating pain caused by my terror for his life? There were days and weeks when the world went on without me being aware of everyday events. Once in a while, I would become half-aware of conversations and circumstances around me. I wanted to scream, “Who cares? Can’t you see how trivial this is to me? Can’t you feel my pain? Help me–or get out of my sight!”"
A Different Kind of Death, posted on the Exodus International website

"It has been eighteen years since I found out about my son’s homosexuality. Sometimes when I share this with other parents who have just discovered their child’s same-sex struggle, I see the look of panic in their eyes. Some have even expressed, “I can’t make it that long!” I testify that yes, you can make it with the help of the Lord. I didn’t start out on this journey emotionally healthy and certainly not very dependent on Him. Within two years of his “coming out,” I went from initially telling my son that he would not be in this lifestyle and live with us to going to gay bars with him and his partners, supporting his lifestyle. Then I went from trying to ‘fix’ him on to laying him down at the feet of Jesus and that I have had to do more than once. When I stopped trying to dull the pain with alcohol, I began to feel every emotion that accompanies this trial. The Lord has never abandoned me there."

Depths of Despair to a Posture of Praise, posted on the Exodus International website

"At first there was a typical response. I squalled about AIDS and not having grandbabies. I cried those crocodile tears that he had cried in the mall when he looked up at me discovering there was no Santa. Thirty minutes later, before we got home, we hugged, and until this day I can't imagine Benjamin not being gay."
"I have something to tell you.", posted on the PFLAG website

"I started going to PFLAG, not because I had any issues or needed to deal with anything, but in the hopes that I can convince other parents that just because their child is gay does not make them any different than they were before they knew they were gay. Your child will always be your child and you need to remember that you are a parent no matter what. A parent should always have unconditional love for their child and should always be there for them."
"Your child will always be your child." posted on the PFLAG website

The difference is clear. Members of PFLAG, who share a belief that gay people should be accepted as part of human diversity, range from transient grief reactions to no grief at all about their child coming out. Members of Exodus International, who believe that homosexuality is something to be cured, have enduring, overwhelming grief. And though their grief lessens with time, there is a note of sadness to them even years later.

When reading the Exodus International parent stories, I was struck by how much they sound like parents of disabled kids. And I think the same basic process is going on. Parents find out that their child is not the kind of child they hoped for, but instead has some characteristics that their value system does not find acceptable. The tone is different, of course - I have yet to meet anyone who thinks being disabled is a sin - but the sadness is the same.

"Autistic. Autism. That word still kicks me right in the stomach. It knocks the wind out of me as much as it did the first time I heard it a year ago, in the cold blunt way we were told of your disorder. "Yup, it's Autism, and it's never going to go away." I remember feeling like all my blood had left my body. And I remember hearing the cold October rain slapping the window of the white, sterile psychologist's office. It's one thing to harbour nagging suspicions; it's quite another to hear the word AUTISM from the mouth of a professional, and to see it in black and white. No longer deniable. Inescapable. Lifelong."
My Son, posted on the Canadian Hyperlexia Association website

Researchers talk about a phenomenon known as 'chronic sorrow'. Basically, instead of a gradual resolution of grief leading to acceptance, some people experience a cyclical form of grief, which resurges at various trigger points or when the person is under stress. It's felt to be a common reaction to having a disabled child. And they theorize that it is due to the grief-causing event being an ongoing thing rather than a one-time loss - rather than just grieving your child and moving on, you deal with the disability every day.

I think that's only one piece of it. The contrast between PFLAG parents and Exodus International parents looks to me like a contrast between resolved grief/no grief and chronic sorrow. I suspect that chronic sorrow also depends on an unchanging belief system that views the situation as worthy of grief. Even if the situation continues, a change in beliefs (this study found a trend for homophobic attitudes to decrease over time in parents of gay people) can lead to a resolution of grief.

And this provides a more hopeful outlook, I think. Chronic sorrow isn't inevitable if you have a disabled child. If you learn a different way of looking at disability, you may find you have nothing to grieve for anymore.

Social Skills

2011-06-29T15:46:00.000-07:00

I think most of the research into social skills is screwy. The reason? It all assumes you're interacting with an NT person. Therefore, 'good social skills' refers to good understanding of NTs, while 'poor social skills' refers to poor understanding of NTs.

Imagine if we defined 'good language skills' as 'speaking English well'. A celebrated Swedish author, who writes compelling and interesting books but whose English is very poor, would be considered to have poor language skills. I hope everyone can see the problem with that. The same problem arises when we describe 'good social skills' in terms of ability to relate well to NTs.

I think there are two distinct sets of social skills. One is the ability to 'put yourself in another person's shoes' and imagine how you'd feel in their situation, and use that to decide how to treat them. This works well if the person you're interacting with is similar to you, not so well if they're quite different from you. Most NTs use this set of skills quite heavily, because most people they meet are similar enough for it to apply fairly well.

The second set of skills is the ability to set aside your own perspective and pay attention to the other person, to figure out what they're thinking and feeling by observation. This is more laborious and inconvenient, but it works with anyone, no matter how much they differ from you. Most NTs seldom get a chance to learn these skills, unless they travel to another culture, form a close bond with an animal (merely having a pet doesn't necessarily count), or befriend someone with a developmental disability.

For autistics, and for many other people described as having 'poor social skills', what's actually going on is quite different. They are different enough from most NTs that 'putting themselves in other people's shoes' frequently leads to the wrong response - such as a 10 year old regaling his classmates with facts about cockroach biology on the assumption that they'll find it just as fascinating as he does. With time and effort, they learn to stop putting themselves in other people's shoes, and instead use the second, harder set of social skills a lot.

I think both sets of skills are important. Being able to put yourself in someone else's shoes, when appropriate, results in a far deeper experience of empathy for that person, and gives you a very rich knowledge base to interact with them. And though it's easier than the second set of skills, it does take a certain degree of self-understanding to be able to match up someone else's experience to your own and figure out what would have been helpful to you in that situation.

And the second set of skills is important in understanding diversity, in seeing the rich variety of experience for what it is. It's also, I think, important for social scientists, who use similar strategies even when dealing with their own 'kind' of people. And it's important because even NTs can't always avoid interacting with people who are different from them. You may find that circumstances throw you unexpectedly into a situation of bridging difference, such as when a new mother is told that her child has a developmental disability.

Atypical kids often learn the second set but not the first set. This means that they learn to see interaction in general as difficult and confusing. It also means that they have more trouble developing self-understanding, because they don't get to form links between their own experience and what they see in others. Alexithymia, the inability to name or identify your own emotions, is commonly associated with autism. I suspect most kids learn to label emotions by having adults correctly recognize and label their own emotions as they're feeling them (which is harder when the adults are struggling to bridge a difference between themselves and the child), and by empathizing with others while hearing people label the others' emotions (which is harder when you wouldn't feel that way in that situation). Spending time with people who are 'like you' is very important to understanding yourself.

Which brings me to the topic of integration vs segregation. Atypical kids, in order to succeed in life, need to learn skills for relating to NTs. And segregation is often used as a way to deny a proper education and enable discriminatory practices - no 'proper people' see it who aren't participating in it, and the children don't see counter-examples to make them question it. But on the other hand, segregated spaces are important, since they allow atypical people to connect with others who are more similar to them. The solution, I think, is to allow opportunities for both integration and segregation, and to make sure the segregated spaces are voluntary and positive (and preferably organized by the same kind of people who participate in that setting, like Autreat).

Neurotypical people often miss out on learning the second set of skills. Being the majority group, this only causes problems under special circumstances, but it does mean missing out on some of the richness of human diversity. And it can be a serious problem for atypical people, dealing with a society where almost no one knows how to relate to them. Furthermore, as I noted before, NTs can't always tell when they'll be thrust into a situation requiring the ability to understand someone very different from themselves.

And here is one of the best agruments for integration - when it's done well, it gives NT children an opportunity to get to know someone different from most people, and to develop the skills to understand them. That is, when it's done well. Many times, atypical kids in typical settings are rejected. No one tries to understand them or see their point of view. Instead, they learn that in order to be accepted by the people who matter, they must distance themselves from anyone who doesn't fit in. I don't think my classmates in any of my classes learnt anything valuable about relating to autistics kids from knowing me, for example.

Other opportunities are cross-cultural encounters such as exchange programs or simply having immigrants in their social group. Being an immigrant, of course, is a potent way to learn about difference - I remember reading about a father of a high-functioning autistic boy who gained a better understanding of his son after they moved from US to England and he started running into social misunderstandings. Having pets can also be a good experience, but only if you approach your relationship to them with the understanding that they have their own, rich, nonhuman experience of the world. If you anthropomorphize them or else treat them like objects that happen to move around on their own, you won't gain much in the way of understanding differences.

Steering My Brain

2011-06-24T09:10:00.000-07:00

I read an interesting article about the dangers of the Internet, right here. And while I could see the potential problem, my high level of Internet use seems to have had none of the adverse effects they warn about. I could definitely resonate with the need for downtime, since that's when I tend to get most creative.

I was pondering why I haven't found my frequent Internet use - including several forums that I sometimes compulsively check - having any of the effects they describe. I still get plenty of writing done, I still enjoy quiet time petting my cat, I still read stories and empathize with the characters. Even though I have felt the pull of the Internet (and especially World of Warcraft), that pull comes and goes, leaving plenty of time for other things.

I think it's because I'm autistic. And not that autistics are inherently better at avoiding obsession - quite the opposite! All my life, I've been getting obsessed with one thing or another, and learning skills to handle obsession. I know when to give into it and let it out of my system for a bit. I know how to make myself stop something I don't want to stop, in order to do something less interesting. I know how to get my brain shifted into different 'modes', from 'World of Warcraft playing' mode to 'going for a walk' mode to 'working on a story' mode to 'doing some academic research' mode. Since early childhood, I've been learning these skills in many different settings, because almost anything can be as addictive to me as the Internet.

It's like if you took a sighted person and a blind person and put them both in a dark room filled with obstacles. Normally, a room full of obstacles would give the blind person more trouble, but now it gives them less, because part of the room's design ends up temporarily giving the sighted person the same impediment the blind person deals with all the time.

Most people have a 'direct way' and an 'indirect way' to steer their brains, and Internet disrupts the function of the 'direct way'. For me, the 'direct way' is functioning poorly all the time, so I focus instead on the 'indirect way' to steer my brain - what Amanda Baggs refers to as 'thermals'. I've learnt how to find the right thermals, how to nudge them into existence if I can, and when a small amount of flapping can get me onto a new thermal. Most people are much stronger flappers than I am, so they just get by with ignoring the thermals, until a strong wind wrests away control of their flight. Caught up in that strong wind, they try to flap against it and fail, while I gently shift my direction to find the way out without much effort.

And this probably applies to more than just the Internet. I've often wondered why there aren't more autistics with addictions, such as alcoholism, gambling addiction, etc. (A search of google scholar with the keywords 'autism addiction' only finds the crackpot theory that improper gluten and casein digestion causes opiates in our brains, not any research showing links between higher-functioning autism/BAP and addictive behavior.) And I think it's because we know how to manage overwhelming desires without letting them consume us. It may look like we're being consumed by it to others, on occasion, but we're just letting it out of our systems, and the intensity will fade somewhat over time. Other people don't experience this intense a desire for something, until they find things that highjack the pleasure centers of their brains and cause addiction.

I have no evidence for this theory, really, but it's an interesting thought. (And I took a break from World of Warcraft to write it!)

Naivety and the Free Market

2011-06-12T16:17:00.000-07:00

It seems like it's usually leftists who get called naive. But in some ways, many right-wing people strike me as much more naive.

Conservatives seem to fall into two groups - those who geniunely believe in the ideals they espouse, and those who only believe in lining their own pockets. The first group doesn't realize they're being used by the second group. They don't release they're helping the second group. And this is what I mean by naivety.

We haven't had free enterprise in 200 years. There are some very powerful comporations who crush any small businesses that threaten their profits.

Have you ever noticed how gas prices in every Canadian gas station are exactly the same? (I don't know the situation in US.) And how they go up before every long weekend? And how they go up when the oil supply is threatened, but don't go down when things improve?

Back in the 80s, gas stations charged all sorts of different prices, and many were 'Mom and Pop' small gas organizations. Then the 'price wars' came. The big corporations agreed to drive the price of gas really, really low, low enough that the small gas organizations went bankrupt because they weren't making any profit. (The big corporations had enough money saved up, or other sources of income, that they could weather the loss.) Then, once they controlled the profit, they made a deal to all charge the exact same price so people would be forced to pay it. My Mom used to work at the Co-op gas station, and they'd check the prices on nearby gas bars to make sure they charged the same.

There are many ways that you can make a profit on a free market economy while screwing the public and the small businesses. You can get a monopoly - De Beers has a monopoly on diamonds, which is why they're so expensive. You can go into price wars to cut down on your competition. You can sell cheap junk so people have to replace it often - as long as everyone else sells cheap junk, you'll do fine. You can cut the forests down faster than they can grow, or fish the fish faster than they can breed (what do you think happened to our cod stocks?), because you can make a profit today and go into a different line of business ten years from now.

A free market economy can be a great thing. I see it in World of Warcraft, where you can find stuff for affordable prices on the Auction House, and sell stuff there and make some good coin fairly easily. But World of Warcraft isn't realistic. It doesn't cost you any in-game money to stand around mining ores. It's prohibitively difficult for others to stop you from mining ores. And if everyone's prices are too outrageous, many of your customers can go out and get the stuff themselves instead of buying it. Lastly, it's just a game, and no one lives or dies based on whether they turn a profit on that stack of copper ore.

In real life, a free market leaves us with no protection from exploitation, from having our futures undermined for today's profits, from being forced to pay through the nose for cheap crap that we need, from having good businesses go bankrupt through no fault of their own. That's why we need government controls on business - so we can keep the market as free as it can possibly be.

Pro-Choice and Pro Disability Rights: How Do You Reconcile It?

2011-06-08T11:52:00.000-07:00

Firstly, I will state that I'm pro-life. I believe that, as long as cell differentiation has occurred, embryos and fetuses are deserving of the right to life, and that right takes precedence over a woman's right to control her own body. (I'd like to clarify, for people who stereotype pro-lifers, that I am atheist, feminist and quite left-wing in my attitudes. Pro-life doesn't have to mean 'Christian Right'.)

Recently, I got dragged into an abortion debate on a forum. Most of the people there seem to be pro-choice, although I certainly wasn't the only pro-life person there. With the exception of one guy who supported infanticide, most of the pro-choice people were of the opinion that the right to life only applies after you are born.

And while they tossed around many arguments about the rights of the mother, what it finally seemed to boil down to, for most of them, was that embryos and in some cases fetuses lack certain cognitive traits that they felt determined personhood. Traits such as feeling pain, 'consciousness' (however that is defined), feeling emotions, etc.

One thing I jumped on immediately was that those are also traits many already-born people lack - namely, people with certain disabilities, such as insensitivity to pain, 'vegetative state', etc. When I pointed this out to them, I discovered that most of them were just fine with the way Terri Schiavo died - to them, she wasn't a person either.

But I know there are pro-choice disability rights activists. If you are one of them, I have a question for you. How do you reconcile denying certain rights to embryos, while granting them to people in vegetative states?

Mindless

2011-05-30T11:21:00.000-07:00

One term that I see thrown around a lot in fiction is 'mindless'. Various monsters, most commonly zombies, are referred to as being mindless. Generally this indicates that they will not be able to speak, will have a very simple strategy of attack, and will not learn from mistakes.

This term bothers me. Such a creature as I described above is not, technically, mindless. It's clearly capable of thinking - just in a very simple and inflexible way. A typical horror movie zombie can do things like processing sounds and orienting towards them, (clumsily) coordinating their body to move towards the sound, feel hunger and know that biting something is what they should do about it, etc. All of those, though they seem very simple to the average person, become very complex if you look closely at what is needed to do it. For example, do you know how many muscles have to move in perfect timing for you to take a step? A lot. (Incidentally, the only way a walking, attacking zombie could be mindless is if it's controlled by a necromancer or something.)

I see this in real life, too. I can't count how many times I saw someone refer to Terri Schiavo or other people in vegetative states as 'brain dead' - even though, by breathing, having reflexes, etc, the person is proving that some parts of the brain are working just fine. And recent research is suggesting just how hard it can be to rule out complex cognition in a severely brain-injured patient.

There seems to be this idea in people's heads of an 'empty shell' - an animate body without a person inside. We seem determined that there must be someone who is like this, whether in fiction or in real life. And we keep applying this idea to all sorts of people who can't communicate and lack various other skills.

It's theoretically possible that there is someone out there who has a functioning autonomic system but no cognitive skills whatsoever. But we have no proof of their existance. And meanwhile, we keep projecting this image onto people who are aware and reacting to their environment, but processing in very atypical and/or extremely simple ways.

Community is Community

2011-05-18T06:55:00.000-07:00

A lot of people criticize Internet relationships. They say these relationships aren't real, and they distract from real relationships. They say these relationships are no replacement for real-life relationships.

The last point is certainly true - there are some thing you can get from a good real-life friendship that you can't get over the Internet. But that doesn't make Internet relationships valueless.

I posted awhile back about my younger's brother's unhappy experience with a gym teacher. When he came home that day, he was the first one home, and was extremely upset. He logged onto World of Warcraft, on a draenei paladin character.

One of the multiplayer elements in World of Warcraft is guilds. Guilds are communities of players who work together. They have a shared bank and various perks based on how experienced the guild is. Many guilds have regularly scheduled events such as raids (where 10 or 20 high-level players take on a very difficult dungeon together). And, most importantly, they have a guild chat. You can tell which other guild members are online, and you can talk to them.

That's what my brother did. His draenei paladin, his worgen druid, and my night elf hunter are all part of the same guild. On that day, he talked to two guild members, the guild leader and a member who is apparently a soon-to-be mother. He told them what had happened and how he felt, and they comforted him. By the time Mom got home, he was calmed down.

There's another person I know of who's been helped more dramatically. He hangs out on the TVTropes 'On Topic Conversations' forum, under the username DJay32. In November of last year, he posted a thread titled "Could someone.. help? A bit? Please? *Massive Story Inside*". In that first post, he told us that he was 15 years old and being physically attacked by his father and older brother, and not getting enough food.

The thread is now 60+ pages long, with more than a thousand posts. The other members of this forum told him that he was being abused, that he did not deserve such treatment and should contact social services. Sadly, social services didn't hold up their part, delaying until his sixteenth birthday and then claiming they "don't foster sixteen year olds". But the members of this forum have stuck with him, advising him on various routes to seek help, the locations of nearby food banks, and how to get around his parents' efforts to keep him from telling on them. And they've supported him emotionally.

I wouldn't be surprised if TVTropes forum is keeping this kid alive. He has been losing time, waking up to find that he's written and drawn things depicting suicidal thoughts. He says he wants to die, but can't kill himself because of his friends telling him suicide is a bad idea. And when his Internet connection goes down, he gets desperate. He doesn't really have any support other than the Internet, since his family recently moved and he's very shy in person.

Internet relationships, to be clear, are real. They involve real people interacting with other real people, and can have real effects on people. They are different from in-person relationships, but that doesn't make them worthless.

Just The Way He Shows That He Loves Her

2011-05-17T12:46:00.000-07:00

I've noticed a certain formula that tends to occur in Urban Fantasy stories. You have a woman, who is either a normal human, has superpowers that aren't useful in combat, or is a werecreature where males of her kind outnumber females (thereby making her a prize to be protected). Her boyfriend is either a vampire or a werecreature, and this causes him to behave in certain instinctive ways towards his love.

He may stalk her, stated to be either out of worry for her safety or because he can't stand being away from her. He gets violent with romantic rivals, or sometimes even a guy who she merely interacts with. He gets even more violent, murderously so, with anyone who hurts her. He's extremely controlling towards her.

And this kind of guy is seen as romantic. An ideal partner. It doesn't matter if he almost kills her nice male friend, or if she has no privacy, or she feels like she'd 'dating the Godfather'. He's doing it because he loves her, so it must be OK.

There's a stereotype that abusive spouses are just plain bad people. That they don't care about their spouse's feelings, that they fake remorse to get her to stay. And that all abusers must be physically violent towards their spouse - the threat of violence, or emotional manipulation don't count as abuse.

In reality, many abusers have borderline personality disorder*. People with borderline personality disorder can love others, in fact their love is generally too intense rather than the opposite. They feel everything way too intensely, and can't control their reactions. And one of their biggest fears is being abandoned.

Abuse typically involves a build-up, the abuse, and then a 'honeymoon period' where the abuser is apologetic and loving. Typical portrayals have suggested that the honeymoon period is manipulative. That's true for some abusers, but it's not true for borderline abusers. When they apologize and try to make up for what they did, they really are sorry about it. But they have no idea how to stop themselves from doing it again.

The idea that all abusers are cold, unfeeling monsters is a dangerous one. Because when it's obvious that he really does love her, that he's not a cold, unfeeling monster, then people tend to assume he can't be an abuser. No matter what he does. Especially if he never actually hits her, if his abuse consists only of threats and emotional abuse.

One big reason why people perpetuate this myth is to convince abused women to leave the relationship. She often stays because of the love, and because she pities him and wants to help him. If you can convince her that he doesn't love her and she can't help him, presumably, she'll leave.

But the thing is, a person doesn't need to be cold and uncaring to be a danger to you, and someone you're not able to help by staying with. Borderline personality is a hard condition to treat, and a hard condition to live with. And the person must realize something is wrong with them and want to change in order to make much progress in actually changing. Many borderlines think their reactions are just to be expected, especially since borderline personality disorder is typically caused by abuse.

And fiction writers should stop buying into the myth that abusive behavior is romantic, and the kind of thing an ideal lover does.

* Note: This doesn't mean all people with borderline personality are abusers. The traits of this condition make abusive behavior more likely, but not guaranteed. All borderlines are unique individuals, and they'll express their problems differently.

Disabilities and Self-Improvement

2011-05-05T06:13:00.000-07:00

I've noticed more and more that society seems to think disabled people have an obligation to 'self-improve', to try to minimize or completely overcome the effects of their disability. Failure to do so meets with various stereotypical reactions.

The first is pity, believing the person is 'giving up'. This is based on the belief that being disabled is a terrible state. If you are not trying to get out of that state, you have resigned yourself to unhappiness. This is probably the most common reaction, directed at all kinds of disabled people.

The second is to think the person is lazy. This is probably for much the same reasons that poor people are stereotyped as lazy - so that instead of admitting that they need help, we can abandon them and blame them for it. It's especially common to think laziness if the disability is undiagnosed, or if it is inconsistent in its' effects, or if it tends to make things harder instead of making them impossible.

The third, which I've seen only with behavioral conditions so far, is to think the person is looking for an excuse to engage in bad behavior. I'm sure this one is true in some cases, but overapplied. A specific form I've seen a lot is the idea that autism spectrum conditions can be an excuse for someone to act like a jerk. (Never mind that jerks and autistics act totally differently, and that typical autistic behavior is only offensive if you misunderstand the reasons for it.) I've also seen people claim that ADHD is a diagnosis applied to spoiled brats instead of disciplining them. I suspect this originates partly from guilt that you've treated a person badly for disability-related traits (it's seen as acceptable to bully a weirdo, but not a disabled kid) and partly from misunderstanding the reasons behind disability-related behaviors. And partly from the few individuals who really do use a behavioral disability as an excuse.

There are a small number of disabilities (eg pedophilia) where failing to overcome the condition carries a potential for real harm to others. In those cases, I think the person does have a moral obligation to try to overcome their disability, at least as much as is necessary to prevent harm to others.

But most disabilities cause no harm to others. And most, if properly accomodated, don't even cause harm to the person who has them. Many can be dealt with just as well or better by changing the person's environment, instead of changing the person.

And many times what gets lambasted as failure to overcome a disability is in fact realistic adjustment to that disability. For example, I've heard of several people who can walk with difficulty, used to walk full-time, and now use a wheelchair or scooter to get around. Many of them, when first making the transition, were accused of 'giving up', when in fact they simply wanted to be able to get around easily.

I'm of the opinion that we should not expect any more effort from a disabled person than we would from a non-disabled person. Some people will exert tremendous effort to reach a goal they find personally important, such as Olympic athletes. Others will decide that they'd rather have a life than reach that particular goal. Why shouldn't we view overcoming disability the same way?

And the cool thing about discovering that you have a disability is learning to try differently instead of just trying harder. For example, instead of exerting your full effort to learn to read in school and still falling short, a dyslexic person could get teaching that suits their learning style and allows them to learn easily. Instead of spending an inordinate amount of effort on a basic skill, you can get accomodations so you can direct your attention to more important pursuits. Instead of fighting to force your brain into an activity it's not ready for, you can learn to follow the thermals and get much more done with less effort. These are the reasons why we indentify disabilities, and seeing the disability merely as something to be overcome interferes with this goal. (Incidentally, most self-diagnosed people self-diagnose largely for this reason too. Many disability coping strategies can be implemented even if you don't have an official diagnosis.)

Punishment, Revenge and Deterrance

2011-05-04T17:46:00.000-07:00

There are three concepts that people tend to conflate. They all involve doing something nasty to someone because they did something nasty themselves. But the motivation is different.

Punishment is a psychological concept. Basically, if you engage in a behavior and it results in something unpleasant, you're less likely to do that again. The motivation behind administering punishment is to reduce the future frequency of that behavior in that person. An example would be if a parent catches a kid stealing a cookie and decides to put the kid in time-out, hoping that the kid will refrain from stealing cookies in the future.

Deterrance is a bit like punishment, except that it's not the wrong-doer's behavior that they're intending to change, instead it's an onlooker's behavior. This is also a psychological concept - if you see a behavior result in a bad outcome for someone else, you're less likely to imitate them. An example would be if the parent puts the cookie-thief in time-out in full view of a younger sibling, hoping that the younger sibling will refrain from stealing cookies.

Revenge is an emotion-driven action. It's not about changing anyone's behavior, instead, you're expressing the anger and hurt that the behavior caused, trying to make yourself (or someone else) feel better by causing equivalent suffering in the perpetrator. An example would be if the kid took the last cookie, that the parent was planning to eat, and the parent got upset at being deprived a cookie and decided to put the kid in time out for that reason.

Obviously, the same action can serve all three purposes. But it doesn't always do so. For example, some actions prevent the person from being able to repeat the behavior - life imprisonment and execution are two examples. These could still deter others or serve as revenge. Sometimes people really don't mind the person's behavior but feel that it should be punished anyway, such as some of the hilarious antics that children engage in. Sometimes no one else knows what the consequence of that action is.

In addition, since both punishment and deterrance have purposes, they could fail at their purpose - maybe the person is insensitive to punishment or unable to control the behavior, or others assume they won't be caught. Psychopaths are usually insensitive to punishment, for example, and drug addicts have strong drives to do certain actions which overwhelm their fear of punishment.

Revenge is purposeless. In my opinion, purposelessly causing suffering in others is morally wrong, no matter who they are. It's wrong when the perpetrator does it, and it's wrong when someone does it back to them. So if the only reason for providing a negative consequence is revenge, then you shouldn't do it

Fake Asperger's Syndrome

2011-04-25T10:39:00.000-07:00

I was surfing Cracked.com today. I find a lot of their stuff funny and interesting, and most of the psychology stuff (the only topic I'm informed enough to judge) is pretty accurate. But today, I found something different.

This article is about stupid causes. I was sort of questioning their inclusion of PETA campaigning against boiling lobsters alive, since being boiled alive is a pretty inhumane death and even very primitive lifeforms are capable of pain (it's rather basic to survival). But I was willing to shrug it off, because I don't think my cat is bad for torturing mice to death. (I believe killing other species is fine as long as you have a good reason to do so and they're not endangered.)

But at the very end, they listed the Asperger's Pride Movement. Citing Aspergia.com, they commented that:

"Asperger's is a real disorder for some, but has turned into a kind of "get out of self-improvement free" card for legions of socially awkward Pokemon fans. This latter group doesn't care about your "medical credentials," "basic common sense" or even "knowing people who actually do have Aspergers." This syndrome they read about on Wikipedia once is their winning lottery ticket to a life of never having to learn how to interact with other humans. Welcome to the Aspergian Pride movement."

There were several comments by offended aspies, of course. But several comments were along the lines of 'well, this is true for jerks who self-diagnose with Asperger Syndrome in order to get away with being jerks, but not for people who really, truly have Asperger Syndrome.' For example:

"The article may be a bit confusing on the matter, but it's only taking a horribly offensive crack at the people who DO NOT in fact have it, but pretend they do in order to get away with being a dick."

There has not been any studies on how accurate self-diagnosis of autism spectrum disorders actually is. I know there are people, like myself, who self-diagnosed and then later got an official diagnosis. There are undoubtedly also people who self-diagnose as autistic but are probably not actually autistic - most of whom probably have some other condition instead.

But people who use self-diagnosed AS as an excuse to be a jerk on the internet? This I have not seen.

And not from willful blindness. On several occasions, I have asked people to show me a person who was trolling and used Asperger Syndrome or autism as an excuse. The only example anyone could point to was Christian Wesler Chandler, who has an official diagnosis. Another person mentioned a person long ago on some forum they frequented, too long ago to find the posts now.

Yet, to hear people talk, these people are so common and so vocal that they're making all the 'real' autistics look bad. Which only makes me ask: where are they? If they're so common, how come I've never seen someone like this on any forum I frequent? How come no one can show me posts made by such a person?

Could it be that they're simply a stereotype? Possibly invoked to discredit autistic self-advocates?

Why 'Easy' Children Aren't So Easy

2011-04-18T13:09:00.000-07:00

I once read a book called The Difficult Child, by Stanley Turecki. In that book, he describes 10 different dimensions of temperament - activity level, impulsivity, distractibility, intensity, regularity, persistence, sensory threshold, initial reaction, adaptability and predominant mood. Every child is born with a distinct temperament that can be described by where they are on the spectrum of each of these traits. This is mostly backed by research, including a landmark study published in 1963 by Thomas et al. (Though I don't think the research supports his insistence that ADHD and other neurodevelopmental disorders are not temperament. After all, ADHD is defined by hyperactivity, impulsivity and/or distractibility, all of which are extremes of the above dimensions.)

However, it's not just about describing a profile for each child. The research also shows three clusters that describe many children. One cluster, composed of low activity, initial withdrawal, low adaptability, low intensity and negative mood, has been called 'slow to warm up' and mostly ignored in the research and in this book. The other two clusters are exact opposites - 'difficult' children have low regularity, initial withdrawal, low adaptability, high intensity and negative mood, while 'easy' children are the opposite.

The difficult vs easy distinction has appeared under different names in other books. The Strong-Willed Child by James Dobson talks about strong-willed children, who push the limits and are relatively insensitive to punishment, as opposed to compliant children, who have a strong desire to please adults. The Highly Sensitive Child by Elaine Aron talks about 'highly sensitive' children who have acute senses and are prone to overload, and less sensitive children in contrast. The specific traits vary, and certainly they're not all talking about the same children (strong-willed children don't seem very sensitive, for example), but the same theme is present in all. There is a category of children who do well with many different parenting styles, and another kind of child who will suffer seriously if not raised with a style exactly suited to their temperament.

According to most of those books, my brother would be considered an easy child. He is generally compliant and wants to please people. He adapts fairly well to change, seldom looses his temper, doesn't mind a lot of noise or activity, pays attention well (except to homework), isn't very impulsive, and is a friendly kid. About his only difficult trait is sensitivity to other people's emotions, and many books call that an 'easy' trait. I'd be considered difficult - stubborn, explosive temper, bothered by change, poor self-control, easily overloaded, switching between inattentive and hyperfocused depending on my interest level, etc.

But in some ways, I think I'm better off than my brother. If he isn't being treated in a way that suits him, he doesn't protest or stop functioning. He suffers in silence, with only subtle signs that something is wrong. I, on the other hand, make it very obvious through my behavior when something doesn't work for me.

Many easy children, I suspect, are putting up with not getting the best handling for their temperament. For example, if you harshly discipline a compliant child, they'll be obediant and smiley even though they're terrified and ashamed inside. If you don't give them enough attention, they won't decide to flush the dog down the toilet - instead they'll start jumping through hoops. I've seen my brother come home with tears in his eyes after a teacher or another student was mean to him, and when I talk to him about what happened, he seldom mentions speaking out against it, even when he knows someone who'd intervene. Many other times, we find out about these things days after they happen, because he didn't want to think about it or bother anyone with his troubles. I've also found myself pushing him to do things he didn't want to do and not even realizing I've stepped all over him, because he didn't complain (or not until the final straw).

And another thing to worry about: children who are easy for adults to manage, are often easy for other kids to manipulate. My brother, because of his strong desire to please, is quite sensitive to peer pressure. He used to have two neighbors, brother and sister 18 months apart in age, who were his best friends until they moved away. Great kids, I liked them a lot, but the sister had a real mischevious streak, and several times she convinced my brother to do things they shouldn't have done. Once, she and an friend of hers (who we suspect was sexually abused) convinced my brother to let them tie him up. He only resisted when he realized this friend was planning to French-kiss him. Fortunately, he's a very strong boy and easily got loose, and told us what had happened right away. I worry about my brother drinking or even doing drugs, not because he doesn't know how bad those are, but because he doesn't want his friends to think badly of him.

All children benefit from being treated in a way that suits their temperament, and suffer when this doesn't occur. And some things that many adults treat as normal are actually bad for any child (though most children won't be ruined by them). An 'easy' child isn't really a child who can handle anything, but a child who doesn't show it obviously when things are going wrong. In a way, the 'difficult' children are actually easier, because they tell you when something is wrong.

Demographic and Disability Variables and Identity

2011-03-17T11:12:00.000-07:00

This is a further analysis of the data described in the previous post. Here, I'm asking the questions of whether gender, race, sexual orientation or disability variables affect a person's view of their disability. (Are certain disabilities viewed more negatively than others? Does being the target of other forms of discrimination affect one's view of disability?)

Demographics

Ethnicity

Data on ethnicity was unavailable for 7 people. Five of them were because I hadn't added that question yet, and the other two declined the question (one left it blank and one answered 'human'). Of the others, 74% were white (I can't seem to get SPSS not to count the non-answers in the percentages, by the way). The 6 non-white people included three 'other' (mostly mixed-race), 1 middle-eastern, 1 native american and 1 black. Due to the small number of non-white people, I clumped them together as a single group.

Since there were two groups, I ran T-tests for Preencounter2, Internalization2 and Identity Subtype by ethnic category. Equal variances were found for all three variables. Preencounter2 and subtype showed no significant differences, but Internalization2 differed at p = .041. Looking at the means showed that whites (mean .6933) scored higher on this scale than non-whites (mean .4000).

Gender

For 6 people, data on gender was unavailable. Of the others, 47% were female, 37% were male and 2 chose 'other' (one with multiple personalities that differed in gender identity, and one biologically female but 'genderqueer'). Due to the rarity of 'other' responses, I dropped them from further analysis (it may be useful to do a further study to see if atypical gender identity affects disability identity).

No significant differences by gender were found on T-test of Preencounter2, Internalization2 or Identity Subtype.

Sexual Orientation

Data on sexual orientation was unavailable for 6 people. Of the others, 51% were straight, 14% were gay, 10% were bisexual, 8% were asexual and 2 identified as 'other' (one 'queer', one didn't clarify). I decided to combine gay and bisexual into one group and asexual and other into another group, reflecting which atypical orientations are widely recognized.

Since there were three categories, I ran a one-way ANOVA, using the Bonferroni and Scheffe post-hoc tests. The variables analyzed were the same as before. No significant differences were found.

General population estimates usually put the heterosexual population as a larger majority than they were in my study. Remafedi et al (1992) found 88% of their adolescent sample were heterosexual, and Smith (1991) found 80% of US adults were heterosexual. Ingudomnukul et al (2007) found that autistic women were significantly less likely than non-autistic women to be heterosexual (70% heterosexual as opposed to 97%), with bisexuality (13%) and asexuality (17%) being the next most common orientations.

So I decided to see if orientation differed depending on whether or not the person had an autism spectrum condition. I ran a T-test and found that there was no significant differences, though the test for equal variances approached significance (p = .075). This is likely a matter of sample size, since the number of autistic (26) and non-autistic (17) subjects both fell below the recommended sample size of 30 or more.

Disability Variables

As mentioned before, my sample included a lot of autistics. Here's the frequencies for each disability category (some had multiple disabilities, so percentages total more than 100%):

Autism Spectrum (65%)
Psychiatric Disorder (27%)
Chronic Illness (25%)
LD/ADHD (22%)
PTSD or other trauma-related condition (22%)
Physical Disability (20%)
Epilepsy or other episodic condition (16%)
Deaf/Hard of hearing (8%)
Blind/Visually Impaired (6%)
Developmental Delay (4%)

Six individual indicated a disability not on this list, including 2 with dyspraxia, 1 with asthma, 1 with multiple personalities, 1 with a sexual disorder and 1 who didn't know what disability he had. The last one was the only one who didn't also indicate something on the above list.

Number of disabilities ranged from 1-7, with 47% having only one disability. Note that if the person had multiple disabilities in the same category (for example, generalized anxiety and agoraphobia), these were counted as a single disability.

I also asked them, if they had multiple disabilities, to indicate which one they'd be focusing on while replying to the survey. One person decided to answer based on being 'multi' and 5 others with multiple disabilities left this question blank, so those 6 were classed as multi on this variable. In total, 55% were discussing autism, 12% were discussing multiple disabilities, 10% were discussing a physical disability, 6% were discussing a psychiatric disorder, 4% were discussing a chronic illness, and one each were discussing a developmental delay, deafness, epilepsy, learning disability/ADHD, an unknown disability and a trauma-related condition.

For the six most common disabilities, I ran T-tests specifically for those conditions. Significant differences were found for autism and LD/ADHD only.

For autism, difference in variances was found for Preencounter2 and Identity Subtype, both showing much less variation among autistics than non-autistics. Those same two categories also differed on means, with non-autistics scoring higher on Preencounter2 and being more likely to be Unclassified/Preencounter Subtype. So, compared to people with mixed disabilities, autistics may be more positive about their disability on average. This fits what I've seen anecdotally, but has not previously been studied. (Interestingly, the opposite result has been found in parents of kids with disabilities, for example in Weiss [2002], where parents of autistic kids tend to have more negative views about their child's disability.)

For LD/ADHD, no significant differences in variance were found, but Preencounter2's variance approached significance (p = .077). Preencounter2 was also significantly higher in those with LD/ADHD, at p = .047. It's interesting to speculate about why this might be, especially since this is a sharp contrast with my findings about autism, despite high functioning autism* causing similar impairment to LD/ADHD. One big difference is that many high functioning autistics do well academically (Griswold et al [2002]), so maybe academic achievement is a more important predicter of disability identity than social functioning. (Maybe social functioning is more readily seen as dependent on other people as well as oneself.)

I ran a two-way ANOVA of Preencounter2 by autism and LD/ADHD to analyze this further. I found main effects for autism (p = .003) and LD/ADHD (p = .022) but no interaction (p = .103).

Then I analyzed the relationship between the three variables and total number of disabilities, using bivariate correlation. No significant relationships were found.

Disability discussed was next. For this, I lumped psychiatric disorder, chronic illness and the conditions dicussed by one individual each into an 'other' category, so I had autism, physical disability, multiple disabilities and other. I ran a one-way ANOVA on those four groups.

No significant differences were found, surprising since autism was observed to be associated with more positive attitudes. However, it's important to note that the percentage of my subjects who were on the autistic spectrum was higher than the percentage who chose to discuss autism, so this may indicate that multiply-disabled autistic individuals (who may have discussed autism, another disability, or 'multi') often viewed their disabilities positively.

* I have no way of knowing the functioning level of my autistic subjects, and some may have been lower functioning (eg assistive communication users), but on average it's probably reasonable to assume that most were high functioning.

Disability Identity Questionnaire - Scales and Validity

2011-03-15T14:34:00.000-07:00

Another one of my old surveys that I'm digging out and using SPSS on.

This one was inspired by an interesting book, Black and White Racial Identity: Theory, Research and Practice. In that book, they talk about stages in development of racial identity for both black and white people in US.

They also include a questionnaire that caught my eye, the Black Racial Identity Attitude Scale (RIAS-B). I decided to reword the questionnaire and give it to a bunch of (49 in total, though some left certain questions blank) disabled people to see whether they'd show similar patterns of responses.

There are four subscales on the RIAS-B, corresponding to four theorized stages: Preencounter, Encounter, Immersion and Internalization. Preencounter refers to a black racist, basically - someone who has internalized the prejudice aimed at them, or at the very least thinks it applies to 'other blacks' even if it doesn't apply to them personally. Encounter is a transition point when the Preencounter person suddenly realizes that their worldview isn't working for them, and they need to change something. Immersion is 'black supremacist/separatist', someone who rejects whites and views blacks as superior, and is seen as an initial solution to the problems that Encounter raises. Internalization is viewing both blacks and whites as equal, and wanting all diversity to be respected.

(Personally, I'd say those stages apply to me. Before I knew I was autistic, I viewed disability as interesting but never questioned the idea that it was a tragic thing. Then, I started thinking autistic was better than neurotypical, around the same time I was starting to realize I was autistic. At that time, also, I considered other disabilities to be totally different from autism. And then I started viewing all disabilities as part of diversity, and believing that no one kind of person was the best.)

So, here's the scale validity tests, first of all. (Note: Each statement is answered either yes or no, with a yes score counting for the relevant subscale.)

Preencounter

The Preencounter scale, with 9 questions, had a Cronbach's alpha of .578, which is poorer than my teacher's recommended .70, but similar to Ponterotto and Wise (1987)'s finding of .63 for the original scale.

I also analyzed correlations between the individual questions and the total score (p value of less than .05 is considered significant and italicized):

'I believe that large numbers of disabled people are incompetent' - correlation .704, p < .001
'I believe that nondisabled people look and/or express themselves better than disabled people' - correlation .513, p < .001
'I feel very uncomfortable around disabled people' - correlation .191, p = .209
'I believe that to be disabled is not necessarily good' - correlation .299, p = .046
'I believe that disabled people should try to emulate nondisabled people and seek to cure or lessen their disability' - correlation .637, p < .001
'I believe that disabled people are damaged in some way and are not meant to be' - correlation .692, p < .001
'I feel guilty and/or anxious about some of the things I believe about disabled people' - correlation .403, p = .006
'I feel that a disabled person's most effective way of solving problems is to become part of nondisabled society' - correlation .459, p = .002
'I believe that nondisabled people are inherently more capable than disabled people' - correlation .645, p < .001

Furthermore, the two questions with the weakest correlations, 'uncomfortable around disabled people' and 'disabled not necessarily good' did not correlate with any other questions on this subscale, while the others all correlated with 1-6 other questions. Therefore, I decided to try dropping those two and recalculating the validity.

Preencounter2, with 7 questions, had a Cronbach's alpha of .714, which is above my teacher's cutoff. So, that's good.

Encounter

The Encounter scale, with 3 items, had a Cronbach's alpha of -.15, which is abysmally poor. In comparison, Ponterotto and Wise found an alpha of .37, which is still fairly poor.

Unsurprisingly, given the very small number of items, the correlation between each individual item and the total was high. However, none of the items showed any significant correlation with each other:

'I feel unable to involve myself in nondisabled groups/activities, and am increasing my involvement in disabled groups/activities' - correlation -.226 with 'reading and thinking' and .05 with 'feeling guilty'
'I find myself reading a lot of disabled literature and thinking about being disabled' - correlation -.226 with 'unable to involve' and .066 with 'feeling guilty'
'I feel guilty and/or anxious about some of the things I believe about disabled people' - correlation .05 with 'unable to involve' and .066 with 'reading and thinking'

I decided to simply scrap this subscale. Two of the questions load on both Encounter and another scale, and both of those seem fairly well correlated with their respective scales. So those two should just be viewed as belonging to their scales.

Immersion

The Immersion subscale, with 7 items, had a Cronbach's alpha of .306, which is pretty poor. In contrast, Ponterotto and Wise found an aplha of .72 with the original version.

When I looked at individuals items and their correlation to the total, I found the following:

'I feel unable to involve myself in nondisabled groups/activities, and am increasing my involvement in disabled groups/activities' - correlation .497, p < .001
'I often find myself referring to nondisabled people in derogatory ways (eg 'stupid NTs')' - correlation .571, p < .001
'I frequently confront the system and the people representing it' - correlation .605, p < .001
'I believe that the world should be interpreted from a disabled person's perspective' - correlation .445, p = .002
'I have changed my style of life to fit my beliefs about disabled people' - correlation .229, p = .125
'I speak my mind regardless of the consequences, even fairly serious ones' - correlation .388, p = .008
'I believe that everything about disabled people is good, and limit myself to disabled activities' - correlation .361, p = .014

The one uncorrelated item, 'changed life', actually correlated negatively with one other item on this scale ('derogatory towards nondisabled'). The weakest correlated item, 'limit self', did not correlate with any other item. So, I decided to try dropping those two items.

Immersion2 had a Cronbach's alpha of .417, still fairly poor. This scale probably needs to be either scrapped or redesigned, since it doesn't seem to apply very well to disabled people. It could be that too many questions involve activities that a disability might impact, such as being unable to involve oneself in nondisabled activities due to inaccessibility. Or, considering that 65% of my sample was autistic, it could be that they interpreted certain questions differently due to literalism or other cognitive differences. Or, perhaps this stage doesn't really occur in disability identity. Further study would be needed to determine this.

Internalization

The Internalization subscale, with 9 items, got a Cronbach's alpha of .695, a big contrast from Ponterotto and Wise's finding of .37. Rounded up, this would be exactly .70, so just barely meeting my teacher's cut-off.

For the individual items, I found:

'I believe that being disabled is a positive experience' - correlation .748, p < .001
'I know through experience what being disabled in our society means' - correlation .221, p = .160
'I feel an overwhelming attachment to disabled people' - correlation .555, p < .001
'I involve myself in causes that will help all oppressed people' - correlation .521, p < .001
'I feel good about being disabled, but I do not limit myself to disabled activities' - correlation .717, p < .001
'I feel excitement and joy when among disabled people' - correlation .641, p < .001
'People, regardless of disability, have strengths and limitations' - correlation -.110, p = .487
'I am determined to find my disabled identity' - correlation .522, p < .001
'I believe that because I am disabled, I have many strengths' - correlation .708, p < .001

The question about people having strengths regardless of disability did not correlate with any other question (and only 1 of the 46 people answered 'no' to it). The question 'know what disabled means' was moderately (.379) correlated with 'strengths because of disability', but no other question. The remaining questions were correlated with 1-5 questions each (the one with only one correlation, 'attachment to disabled', was strongly correlated with 'excitement/joy with disabled'). So, I decided to drop the two uncorrelated questions.

Internalization2 had a Cronbach's alpha of .736, which is pretty good.

Average Scale Scores

I calculated scale scores by adding all the 'yes' items in a scale and then dividing by the number of items in the scale. So, 1 is the maximum and 0 is the minimum score on each scale.

For the original scales, I found the following:

Preencounter - mean .1827, SD .15741
Encounter - mean .4444, SD .24618
Immersion - mean .4441, SD .20254
Internalization - mean .7222, SD .22791

For my modified scales, I found:

Preencounter - mean .1094, SD .18889
Immersion - mean .5000, SD .26247
Internalization - mean .6739, SD .28676

Lastly, I took Preencounter2 - Internalization2 and divided the subjects into three subtypes based on the resulting score: Internalization (-.25 or less), Preencounter (.25 or more) and Unclassified (between -.25 and .25). The frequencies were 80% Internalization, 17% Unclassified and 2% (1 person) Preencounter. Which, by the way, means it would be a good idea to re-run this study in a group who have more Preencounter individuals.

The Gallant Knight

2011-03-10T08:28:00.000-08:00

[Background knowledge: World of Warcraft is a fantasy-based multiplayer online role-playing game, where you can play as one of 12 different races split into 2 factions. There are 9 classes - warrior, mage, rogue, priest, paladin, shaman, druid, hunter and death knight. Levels go from 1-85, with your character starting at level 1 - with the exception of death knights, which can only be made if you have a level 55 or higher character, and start at level 55. My character is a female blood elf mage, around level 30.]

I was doing quests in Stranglethorn Vale, hunting wild raptors (the dinosaurs, not the birds) to prove my strength and trying to steal a treasure from the Mosh'Ogg Ogres, when a male blood elf death knight approached me. His first question was: 'Are you a girl in real life? Just asking'.

I hesitated, suspecting that he was going to come on to me, but I don't like lying or making assumptions about other people's intentions, so I said yes. He knelt before me, and then offered to help me with my quests.

I agreed. So he kept the ogres off as I stole the treasure, and helped to kill the raptors I needed. We may have done one or two other quests, I can't remember. Then he asked if I was single or if I had a boyfriend who might get annoyed at me hanging out with him.

OK, here it came. I had to explain. I told him I was asexual. He didn't know what that was, so I explained that I didn't feel 'those urges', and had no desire for a boyfriend.

'You mean you can't love?' He asked. I explained that I could love family and friends, but didn't feel romantic love.

He was very disturbed by this. He told me I should learn to love, and started giving me advice on how to find true love. I replied that it wasn't a choice, it wasn't something to 'learn', just the way I was. He warned me that I might hurt some guy very deeply, if someone fell in love with me and I didn't reciprocate. I said 'maybe'. That would be unfortunate, but not something I could help.

He didn't seem to get it. He seemed convinced that I should become heterosexual. So, out of curiousity, I asked: 'How do you feel about gay people?'

'!!!!!!!!!' He replied. 'Are you a boy or a girl? Were you born with a penis or not?'

I told him once again that I was girl, and he relaxed somewhat and told me he thought being gay was sick. Then he corrected me on my terminology, saying with girls it's called lesbian. I didn't argue terminology with him, even though I think it's kind of silly to have two separate terms for male and female same-sex attraction and I've heard people use 'gay' for both sexes. Instead, I said that it was part of diversity, that not everyone was the same and I didn't think they should be. He finally gave up on convincing me to be heterosexual.

He didn't make me angry, I want to make that clear. And though he was prejudiced, he was clearly a nice person. He reminded me of the romantic ideal of a knight in shining armor, who feels that women are to be treasured and protected like precious jewels. He wanted me to find a guy who liked spending time with me, not one who just wanted me for my body, and was willing to advise me on how to do that. Although I'm pretty certain he was coming on to me, he wasn't pushy about it. I suspect if I'd told him I had a boyfriend, he'd have gracefully backed off without resenting the time he spent helping me with quests.

But his worldview was not one that allowed for sexual diversity.

Curebie Attitudes in Mothers and Autism Severity

2011-02-16T09:56:00.000-08:00

Neurodiversity advocates always get this particular comment: 'But what about severe autism? How could you see it as part of diversity?' In my research into correlates of curebie vs neurodiversity attitudes in mothers of autistic kids, this raises an obvious question - how does the child's severity of autism interact with the mother's perspective on autism?

I focused more on the parent than the child in my research, but I did ask three questions that could be considered markers of autism severity - child's diagnosis, child's level of verbal skills, and whether the child had 'significant behavior problems'.

Child's Diagnosis

One mother didn't report the child's specific diagnosis. Of the others, 4 (27%) of the children had Asperger Syndrome, 5 (33%) had PDD NOS, and 6 (40%) had Autism.

I ran an ANOVA by diagnosis for curebie/neurodiversity, self-esteem, depression and parental stress. Only curebie/neurodiversity correlated with the child's diagnosis, at a significance level of .034. Parental stress was almost significant at .058.

The post-hoc tests revealed a significant difference between Asperger Syndrome and Autism - parents of Asperger Syndrome children were more likely to endorse a neurodiversity viewpoint than parents of children diagnosed with Autism. PDD NOS did not significantly differ from either group, they appeared to be intermediate between both groups.

So, this would seem to support the hypothesis that parents of more severely-affected children had more curebie attitudes.

Verbal Skills

I had the mothers rate their child's verbal skills on a five-point scale - normal, delayed but communicative, echolalic, limited speech (eg single words) or nonverbal.

When I first ran the ANOVA, it failed to perform any post-hoc tests due to insufficient sample size in at least one group. On closer examination, I realized only one child was rated as 'limited speech'. This child with 'limited speech' was 2 year 8 months old, the youngest in the sample, suggesting that this child should be better considered 'delayed but communicative'. I lumped that child in with the nonverbal children and re-ran the ANOVA with four groups: normal speech (3 children), delayed communicative/limited speech (6 children), echolalic (5 children) and nonverbal (2 children).

The ANOVA failed to find any significant difference by verbal skills in parents' attitudes towards autism, self-esteem, depression or stress levels. None of the p values were anywhere close to significant, so this is probably not due to small sample size (though I can't be certain unless I redo this study with more subjects).

This is interesting, because it seems to contradict the results by child diagnosis. One of the biggest determinants of whether a child is diagnosed with Autism or Asperger Syndrome is their verbal skills. In the DSM-IV, Asperger Syndrome requires no significant delay in verbal skills. Autism doesn't technically require verbal delay, but it does require abnormalities in verbal communication, and verbal delay counts towards an autism diagnosis.

When I ran an ANOVA of the relationship between child's verbal skills and their diagnosis, the p-value was .085, which barely missed significance. The Asperger Syndrome kids included the child with 'limited speech', one echolalic child, and two with normal verbal skills; the PDD NOS kids included one echolalic kid, 4 delayed but communicative kids and one with normal verbal skills; and the Autism kids included 2 nonverbal, 3 echolalic and one delayed but communicative. So there was clearly a trend for poorer verbal skills in the more 'severe' diagnoses, but also a certain amount of within-group variability.

I split the file by child diagnosis and re-ran the ANOVA by verbal skills. The only significant finding was in the Autism group, where parental stress correlated with verbal skills. In order to run post-hoc tests on that, I had to lump the one 'delayed but communicative' kid in that group with the echolalic kids. However, when I did that, the significance disappeared. Not sure what that means. In any case, it's clear that when controlling for child's diagnosis, there was no relationship between their mothers' perspective on autism and the child's verbal skills.

This suggests that whatever it is about child's diagnosis that relates to their parents' perspective on their autism, it's not the child's verbal skills. Maybe the different conditions have different stereotypes associated with them, maybe their diagnosis reflects differences between the kids that I couldn't measure, or maybe the parents reported the child's diagnosis differently depending on their own perception. (For example, I've heard anecdotal reports of the same child receiving different autism spectrum diagnoses from different professionals. In such a case, the parent may be more inclined to believe the diagnosis that best reflects how they view the child.)

Significant Behavior Problems

The question on 'significant behavior problems' was an open-ended question where parents filled in a comment box. Each parent's response was analysed both to determine whether they said 'yes' or 'no' to the question, and which behaviors they reported.

It's important to keep in mind that this is a very subjective question - each mother likely had her own definition of 'significant behavior problems', and the availability heuristic could easily affect reports of behavior problems. So different responses could reflect actual differences in the children's behavior, differences in parental definitions of behavior problems, or differences in how easily the parent called to mind the child's behavior problems.

Two parents left this question blank. Of the remaining mothers, 10 (71%) answered yes and 4 (29%) answered no. Specific behaviors listed were mood problems in 8 children, aggression in 6 children, atypical behaviors (eg laughing out of sync with surroundings, pica) in 3 children, crying in 3 children and self-injury in 2 children.

I ran a T-test for behavior problems and each of the four parent variables. Self-esteem showed no significant associations. Depression had significantly higher variance in the 'no' group (p=.013) than the 'yes' group, but mean rates were no different. Both parental stress and curebie/neurodiversity attitudes correlated significantly with behavior problems - 'no' answers indicated more neurodiversity attitudes and lower stress.

This confirms previous research on parental stress in autism, such as Konstantareas & Homatidis (1989), who found that self-injury and irritability in autistic kids were the best predictors of their mothers' stress levels. This is generally interpreted as parents being stressed out by difficult children, though it's also possible that the parent's stress makes the child's behavior worsen - I know I often have a meltdown when my parents are already upset about something else.

Words, Triggers and Political Correctness

2011-02-15T08:33:00.000-08:00

A lot of people criticize political correctness, saying 'it's just words' and accusing proponents of trying to change speech without changing attitudes - or of naively thinking that attitudes will automatically change along with speech. Meanwhile, proponents of political correctness argue that words do matter, that certain words are hurtful to the people they're applied to, and that use of certain insults follows from and reinforces certain attitudes.

I think I have an idea of part of what underlies this. It's triggers.

Here's a hypothetical kid, named Timmy. Timmy was born with Down Syndrome.

His parents were told to institutionalize him at birth because 'retards destroy families'. They got angry and replied that he was their child and they loved him, and resolved to raise him the best they could.

When he was 6 years old, they tried to enroll him in the neighborhood school, the same school his older brother went to. The school refused him entry. 'We're teachers, not babysitters. Send him to a school for retarded kids.' The parents were angry, but they couldn't change the school's decision, so they sent Timmy to a special school.

Throughout his school years, Timmy would board the special bus that only disabled kids rode on, and neighborhood kids would laugh and point, saying 'look at those retards'. One time, he told them off for laughing at him, and they made fun of his Down Syndrome speaking style and told him that he talked like a retard. Timmy was so upset by this that he couldn't say anything at all.

At school, some of the teachers were nice, and others weren't so nice. The nice teachers were patient and encouraging, and seemed to enjoy spending time with him. The mean teachers tried to hurry him and got mad when he struggled, and talked among themselves about how annoying the retards they taught could be - often forgetting or overlooking that Timmy was within earshot of them as they said this.

One day, Timmy's brother came home in tears, because some of his classmates had made fun of him for having a 'retarded brother'. At first he was outraged and hurt, but he still felt the need for friendship, so gradually he stopped inviting Timmy along when he went out with his friends, and stopped inviting his friends home to meet his family. And sometimes, in order to gain acceptance, he'd laugh along with his friends when they made a joke about a 'retard', inwardly apologizing to Timmy when he did so.

Now Timmy's grown up, and he's become a self-advocate. He's arguing against institutionalization, advocating mainstreaming, speaking out against bullying, telling teachers to be patient and kind when teaching kids like him. And whenever he hears the word 'retard', he hears it echoing from the mouths of everyone who discriminated against him and hurt him. He remembers being a kid with speech problems trying to stand up for himself and getting viciously shut down, remembers anticipating walking to school with his brother and ending up taking a special bus instead, remembers feeling ashamed and frustrated when the teachers pushed him too hard and got mad at him for failing, remembers all the painful moments in his childhood when someone used that word.

My Dad is very good at imitating accents. Once, he bragged to a black South African that he could do an Afrikaans accent, and the guy said 'OK, let's hear it'. My Dad replied, in an Afrikaans accent: 'State your name, kaffer.' (The phrase that most easily came to mind in that accent.) The black guy flinched, my Dad apologized, and he shrugged it off and told my Dad that he'd done a very good job of imitating the accent.

Being the target of discrimination is a traumatizing experience. If you read the literature on PTSD, you'll find that anything that is associated with a trauma can set off painful emotions. I read of one woman who felt anxious when someone stood on the other side of her closed bedroom door - the sight of their legs disrupting the bar of light under the door made her afraid. As a child, her father used to come to her bedroom at night and sexually abuse her, and his legs behind her bedroom door became a signal of impending abuse.

Some derogatory words, such as kaffer (heathen) or faggot (wood for a fire), are derogatory in etymology, whereas others such as nigger (black) and retard (slow) are not. I know one guy who calls himself a 'slow learner', while opposing the word 'retard'. I wonder if he realizes that those two terms mean exactly the same thing. But it doesn't matter what they literally mean, I suppose. What matters is the feelings associated with them - pain and shame with 'retard' and self-advocacy with 'slow learner'.

On the other hand, some people don't have those associations. Some black people have only ever been called 'nigger' by playful black friends, so the word has playful teasing associations rather than hateful ones for them. Others have made a conscious choice to break apart those negative associations, to refuse to allow prejudiced people control over the usage of that word. If you reclaim something, it'll often lose its sting.

But keep in mind that words have emotions linked to them. If you use the wrong words, you'll scare and hurt people by bringing up pain from the past. In my self-defense class, I learnt moves to stop people from choking me. On the following weekend, I was practicing these moves with Dad, and Mom (who was choked as part of childhood abuse) told me to stop. I obeyed. I didn't think there was anything wrong with my Dad choking me with my permission, ready to stop as soon as I needed him to, but I recognized that doing that in her presence made her feel unsafe. For the same reason I didn't practice choking defense in front of Mom, I don't think you should use words like 'retard' and 'nigger' in front of people likely to be upset by them. I don't think those words are inherently banned, but you should be sensitive to the context.

Now, saying those words are fine isn't saying the attitudes that have gotten linked with them are, any more than saying it's OK for me to be consensually choked in self-defense practice is saying it's OK to choke a child abusively.

Curebie Attitudes and Coping in Mothers of Autistic Kids

2011-02-14T15:24:00.000-08:00

A long time ago, I wrote a survey for parents of autistic kids to fill out. I got 16 respondents, all mothers. Back then, I didn't have access to SPSS, but I did some stats on my own. Unfortunately, the results were lost when my website disappeared.

Anyway, I've dug out the data again, and now I'm running it through SPSS to test various hypotheses.

Firstly, a basic description of my data:

some demographic questions (where do you live, what's your ethnicity, what's your religion, what other parents does your child have, how old is your child, what's their diagnoses, when were they diagnosed, do you have any other kids, are they disabled, do you think you're on the spectrum, etc)
if they suspected their child's diagnosis, why, how good their child's verbal skills were, whether their child had a lot of behavior problems, and what therapies their child had gotten and how helpful they were
some qualitative questions about how they were affected by the child's diagnosis, how they thought the child perceived their own condition, how they wanted their child to perceive their condition, and what they thought caused autism
Likert-scale questions about self-esteem (borrowed from some old study that I can't seem to find now)
Likert-scale questions about parental stress (a reworded version of some questionnaire where every question started with 'I need' or 'my family needs')*, scaled so higher scores represent lower stress
Likert-scale questions about parental autistic traits
Likert-scale questions about the DSM-IV symptoms of depression
Likert-scale questions about curebie/neurodiversity attitudes towards autism (this one was the only one not adapted from somewhere else)

I'll do other analyses at other times. But right now, I'll focus on my curebie/neurodiversity questionnaire and how it correlates with parental well-being (self-esteem, depression and stress).

Scale Reliability

If a scale is measuring a single underlying construct, then the items should be correlated with each other. The test for inter-item correlation in a scale is called 'Cronbach's alpha', and the higher this number is, the better the scale is.

I ran Cronbach's alpha on the 17 questions in this scale, and it spat out a value of .894 (the score ranges from 0-1, so this is very good). I noticed that it had excluded 10 cases based on them not having data for all the questions, so I removed one question ('my child's behavior makes sense to me') which I'd added partway through the study and therefore didn't have full data on. The next Cronbach's alpha was .802, and all 16 cases were included in that analysis.

Then I ran bivariate correlations to see if the questions were correlated with the summed score (with higher scores meaning neurodiversity attitudes, incidentally), and found the following for each question (* means p=<.005 and ** means p=<.001, reverse scored means that 'strongly disagree' counted higher than 'strongly agree'):

I feel despair when I think of my child's future (reverse-scored) -- .875**
If my child's autism is not cured, he/she will have to be institutionalized (reverse-scored) -- .560*
I often think my child would be better off dead (reverse-scored) -- .612* (note: all parents chose between strongly disagree and neutral on this question and the next one, none agreed)
I have seriously considered killing my child (reverse-scored) -- .468
I don't think there is anything good about autism (reverse-scored) -- .408
I would rather my child have leukemia than autism (reverse-scored) -- .562* (all parents chose 'disagree' or 'strongly disagree' on this question)
I get very sad when I see a typically developing child who is the same age as my child (reverse-scored) -- .693**
I think of my child as trapped inside autism (reverse-scored) -- .687**
I often feel like I have lost my child (reverse-scored) -- .532*
There is a conspiracy to keep parents from knowing the true cause and/or cure of autism (reverse-scored) -- .313
I worry that my child hasn't got enough therapy at a young enough age (reverse-scored) -- .666**
My child has a lot in common with me -- .619*
Autism is not a big part of who my child is (reverse-scored) -- -.312
Autism is not really a bad thing, it just means you are different from the norm -- .484
I think of myself as a warrior fighting against autism on my child's behalf (reverse-scored) -- .575*
I think of myself as a warrior fighting against society (for example, the school system) on behalf of my child (reverse-scored) -- .555* (note: I originally planned this to be positively scored, but I noticed that it correlated extremely strongly with 'war on autism')

It's a bit disappointing how many of the questions weren't significantly correlated with the total score, though that could've been due to small sample size.

However, the one question that actually showed a (non-significant) negative correlation, 'autism is not a big part of who my child is' (reverse-scored), was interesting. Although many neurodiversity autistic self-advocates (myself included) argue that 'autism is part of who we are, not a condition we have', it seems like most parents who see autism as a big part of their child do not have a positive view of the condition. This question correlated significantly with despair at the child's future, expecting the child to be institutionalized, feeling like they'd lost their child and being at war with autism. So it seems like 'person-first' advocates might actually have a point - some parents seem to view autism as an engulfing monster that has taken over their child.

I could switch that question to being positively scored, or else reword it as something like 'you can't separate my child's autism from his/her basic personality' or 'if my child's autism were cured, he/she would be a different person', which might better tap the neurodiverse sense of autism as part of identity. Ideas for further research!

Curebie/Neurodiversity and Parental Well-Being

(Note: The self-esteem scale had a Cronbach's alpha of .835, the parental coping scale had an alpha of .678, and the depression scale had an alpha of .834.)

I ran bivariate correlations between curebie/neurodiversity, depression, parental coping and self-esteem. The curebie/neurodiversity questionnaire was strongly negatively correlated with depression (-.603, p=.023), positively correlated with parental coping (.830, p<.001) and uncorrelated with self-esteem (.392, p=.148). Depression was also negatively correlated with self-esteem (-.694, p=.004), which is consistent with pretty much any study into depression and self-esteem. But neither depression nor self-esteem were correlated with parental coping.

Given that my depression question were grabbed from the DSM-IV, I was interested to see how many met criteria for a major depressive episode. The cut-off is 5 or more, including depressed mood and/or loss of interest (criteria 1 and 2). I decided to take agree or strongly agree as indicating presence of a symptom. (Note: Diagnosis-by-questionnaire is not an accepted clinical diagnosis, but it is commonly used in the literature to approximate a diagnosis.)

Based on this criteria, 4 parents were depressed and 10 weren't depressed (2 didn't answer all the depression questions and so were excluded). This means 29% were depressed.

Then I ran a T-test on neurodiversity/curebie, self-esteem and parental coping between depressed and non-depressed parents. Self-esteem scores were the only significant difference between the two groups, at (p=.013). This might be due to small sample sizes (4 is a very small number for statistical analyses).

* In retrospect, I shouldn't have reworded the questions, because even slight changes in wording can affect people's responses.

I Just Want Him To Be Safe

2011-02-10T05:03:00.000-08:00

[Update: Mom says the school responded very well to her concerns in a parent-teacher meeting. They said they will talk to the gym teacher and insist that he find other methods of encouraging my brother to be physically active, saying that it's inappropriate to punish the entire class for one student.]

My family is currently living in two separate towns for work-related reasons. My mother and 13 year old brother are in one town, while my father and I are in another.
Yesterday morning, my brother called us in tears. It turns out that the day before had been a very bad day at school. My brother is a big boy, built like a football player, and slightly chubby. He's also not much into physical activity, and not very well coordinated (though far better than I am).
He's told me about his gym teacher drinking protein shakes and giving them lots of fitness advice. The same teacher is also his science teacher, and tends to spend an awful lot of science class teaching about the body. He seems to be completely obsessed with being fit.
Anyway, the day before yesterday, they were running laps in gym. My brother is not a good runner and never will be, because of his build. And this class, he was the slowest and the first to tire. His gym teacher decided to keep everyone running laps until my brother made it through an entire lap without needing to stop. Of course, this was a losing battle, given that the more you push yourself, the more tired you get. My brother eventually ended up lying in a fetal position on the ground, too tired to move. At this point, most of the rest of his class started taunting him, and the teacher praised them for 'encouraging' him.
Another thing about my brother: he is extremely sensitive. He's one of the most caring kids I've ever met. He is very much a people-pleaser, and unlike me, he often doesn't stand up for himself. He is the one in my family least likely to show anger when I have a meltdown, even if it was a conflict with him that set it off. I have to be careful when I ask him for favors because he has trouble saying no to me.
My brother is typically the first one to come home, since his school lets out before Mom's work does. This day, he came home extremely upset. Apparently he kind of trashed the place, for example smashing a piece of fruit on the ground. Then he went on World of Warcraft and talked to people in the guild some of his characters belong to, and they comforted him. (An aside: Video gamers are stereotyped as socially isolated, but for many people, multiplayer video games put them in contact with some great friends they'd otherwise never have met.)
Now my Mom's going to have a meeting with the school, hoping to sort something out, but I don't know if anything will come of it, given how resistant schools are to criticism. Meanwhile, I'm feeling worried. My brother had a lot of school problems last year, and he's having problems this year too. He's been getting down on himself a lot lately - a couple weeks ago he was criticizing himself for being late to school. (He walks to school, and my Mom leaves before him. If he arrives early, he has to wait in class without anything to occupy himself, so he leaves at the very last moment. I suggested he bring along paper and a pencil, because he likes to draw. But the big problem there wasn't his lateness, but his reaction to it.)
I keep thinking about myself, when I was just a year or two younger than he is now. I understand that he's not me, and isn't having nearly as much trouble as I did. But I wonder how much he just keeps inside, rather than telling us. I wonder if he's going to loose sight of happiness the way I did. And I desperately want to protect him from that - but I'm not his parent, just his big sister.

Behavior in Four Chromosomal Syndromes

2011-02-02T13:20:00.000-08:00

On the Trisomy 9 Website, run by the mother of a little boy with partial trisomy 9p, there is a survey. A few years ago, she used to provide the full data set of the survey as well as the results. Back then, I downloaded a copy of it, and now that I have access to SPSS, I've decided to analyze the results myself.

I'm focusing on the subsection regarding behavior ('habits'), because I'm fascinated by behavioral phenotypes. There are many different kids with different conditions described in the survey, but I'll focus on the four most common syndromes - trisomy 13, trisomy 18, partial trisomy 9p, and mosaic trisomy 9. I took all the kids within those four groups (11 with trisomy 13, 16 with trisomy 18, 25 with trisomy 9p and 8 with mosaic trisomy 9) and analyzed their survey results for behavior.

Factor Analysis

The first thing I did was to run a factor analysis (well, actually, the first thing I did was to recode 'yes' as 2 and 'no' as 1, then I did the factor analysis). I don't really know factor analyses that well, so I may have screwed up stuff. If you know enough about factor analysis to spot a mistake I made, let me know.

I found 10 factors. Here they are, with correlations greater than .3 listed:

factor 1: chews on toys (.696), dances (.643), chews on clothes (.588), touches everything (.573), stubborn (.561), tantrums (.550), throws head back (.543), throws objects (.503), shows no fear of falling (.438), bites self (.436), tenacious (.432), rubs hand across face (.411), great memory (.400), kicks feet (.381), loves mirrors (.349), affectionate (.325), must hold something (.307) and loves baths (.303)
factor 2: great memory (-.714), rocks/shakes head (.663), hates eating (.636), kicks feet (.536), throws head back (.520), sucks finger/thumb (.477), dances (-.460), loves eating (-.449), rubs hand across face (.411), drools (.384), very happy (-.378), tenacious (-.365), stubborn (-.353) and must hold something (-.346)
factor 3: drools (.608), sucks on finger/thumb (.517), loves music (.445), very happy (.444), loves eating (.430), socializes (.405), stubborn (-.399), bites self (.346), kicks his/her feet (-.342), throws objects (-.339), chews on clothes (.316), tantrums (-.313) and rocks/shakes head (.312)
factor 4: very happy (.598), dislike solitude (.446), loves mirrors (.441), throws objects (.435), rubs hand across face (-.407), tenacious (-.382), grumpy (-.362), socializes (.352), loves baths (.326), throws head back (-.322) and touches everything (.321)
factor 5: high pain threshold (.697), no fear of falling (.485), loves mirror (-.422), grumpy (.343), loves music (-.340), tenacious (.322), socializes (.314) and bites self (-.302)
factor 6: loves music (-.589), bangs head (.528), tantrums (.384), touches everything (.363), hates eating (-.350), no fear of falling (-.330), loves eating (.314) and high pain threshold (-.311)
factor 7: affectionate (.617), loves baths (-.608), grumpy (.433), dislikes being alone (.380) and socializes (.331)
factor 8: tenacious (.428), drools (.387), touches everything (-.380), grumpy (-.312), throws head back (.303) and tantrums (.302)
factor 9: bangs head (-.590), dislikes solitude (.462), loves mirrors (-.336) and affectionate (-.328)
factor 10: loves mirrors (-.466), grumpy (-.408), must hold something (.394) and rubs hand across face (-.302)

Hard to say what most of those factors mean, though I'm guessing that factor 1 is related to hyperactivity, factor 3 might be hyposensitivity and factor 4 is probably cheerfulness.

Anyway, I was interested in two main questions: do children with different syndromes behave differently, and is there an age-based difference in behavior? (The kids ranged from newborn to 30 years old, with no significant difference in age between syndromes.)

Syndrome differences

I ran an ANOVA for each factor related to syndrome. The ANOVA indicated that most of the factors weren't significantly associated with syndrome category, but factor 2 was (p=.001). On the post-hoc tests (Tukey HSD, Scheffe and Bonferroni), this turned out to be due to a significant difference between trisomy 18 and trisomy 9p. Trisomy 18 scored the highest on this factor and trisomy 9p scored the lowest, with the other two in between.

I then ran ANOVAs on the specific behaviors with a loading of at least .3 on factor 2, and found significant effects for 'rocks/shakes head' (p>.001), 'must hold something' (p=.026), 'dances' (p=.025), 'stubborn' (p>.001), 'tenacious' (p=.031) and 'great memory' (p=.002). The post-hoc tests (same as above), showed the following:

rocks/shakes head: T-13 > T-9p, T-9mosaic; T-18 > T-9p - so trisomy 13 kids were most likely to do this behavior, followed by trisomy 18 kids, then mosaic trisomy 9 and lastly trisomy 9p kids
must hold something: oddly enough, no differences were significant, but trisomy 9p was approaching significance with all three other groups. So, they might be less likely to engage in this behavior than the other three groups*
dances: T-9p > T-18 - partial trisomy 9p kids were more likely to dance than trisomy 18 kids
stubborn: T-13, T-9p, T-9mosaic > T-18 - trisomy 18 kids were significantly less stubborn than the other three groups, who didn't differ from each other
tenacious: T-9p > T-18 - partial trisomy 9p kids were more tenacious than trisomy 18 kids
great memory: T-9p > T-18 - partial trisomy 9p kids seemed to have better memory skills than trisomy 18 kids

Age differences

This was trickier, since there were so many individual values for age. Mean age was 7.36 years, with a standard deviation of 8.165 years. I got it to tell me the 20th (2 years), 40th (3 years), 60th (5 years) and 80th (13 years) percentile, and used those to generate a categorical variable for age - <2.5 years, 2.5-3 years, 3-5 years, 5-13 years and >13 years.

I then ran an ANOVA on the different factors with age. Like the trisomy ANOVA, this one found that only factor 2 (p=.011) showed a significant correlation. The post-hoc tests found that 2.5-3 year olds scored significantly higher (p=.046) on factor 2 than >13 year olds did. (The plot of means shows high scores for the two youngest groups and a steady decrease for the three older groups.)

I then ran ANOVAs on the specific behaviors with a loading of at least .3 on factor 2, and found significant effects for 'throws head back' (p>.001), 'hates eating' (p=.006) and 'rubs hand across face' (p=.022). The post-hoc tests showed the following:

throws head back: under 2.5 > 5-13, over 13 - this behavior was most common in children under 2, and uncommon in kids 5 or over.
hates eating: 2.5-3 > under 2.5, 3-5, 5-13, over 13 - this behavior peaked around 2.5-3 years
rubs hand across face: under 2.5 > 5-13 - this behavior was common in very young children, rare in 5-13 year olds, and moderately common both in 3-5 year olds and over 13 year olds.

It's interesting that, though both age and trisomy were related to factor 2, they were related to different behaviors within this factor. Unfortunately, I haven't figured out how to do a two-way ANOVA in SPSS yet, so I don't know if different trisomies show a different age-related pattern.

Note

I posted a previous blog entry regarding my adventures with SPSS, where I tested whether wheelchair bowling is easier than regular bowling. I have recently corrected a mistake I made in that post - larger sample sizes should have smaller standard deviations, not larger.

　
* It spat out an error message saying "The group sizes are unequal. The harmonic mean of the group sizes is used. Type I error levels are not guaranteed." Type 1 errors are finding something when nothing is there, so that might explain why the ANOVA claimed a significant difference that the post-hoc tests failed to confirm.

Newson Syndrome Possible Criteria

2011-01-19T13:12:00.000-08:00

Newson Syndrome, also called Pathological Demand Avoidance Syndrome, is a suggested subtype of autism. It was described by Elizabeth Newson, and it's the type that best describes me.

The problem: She hasn't said how to diagnose it.

Sure, she's published criteria for the condition, but if you look at her reports, it's clear that not all of these kids meet every single criteria. (In fact, it's doubtful if any do.) She does say that all of them show 'manipulative demand avoidance', but doesn't state how many other traits are needed for diagnosis. And I can think of children with manipulative demand avoidance who are clearly not Newson Syndrome kids - some psychopathic children for example.

I'm planning to do some research into Newson Syndrome on my own as part of my psychology training, but since this condition is mostly only diagnosed in England, and I'm not planning to travel to England anytime soon (I'd love to, but I can't afford it), I'm going to need to diagnose children with Newson Syndrome myself. So I need clear criteria.

Fortunately, at the end of Newson's most detailed report on this syndrome, she provides a table of information on 21 children, all diagnosed with Newson Syndrome. Based on these kids, I've thought up several possible criteria to diagnose Newson Syndrome. When I start doing my own studies, I'll determine which of these systems works best, but for now, here they are. (If you're a researcher interested in Newson Syndrome, feel free to try these out.)

System 1 (a & b):

Universal features:

resists demands, using at least one manipulative strategy (ie not solely through straightforward refusal, ignoring or social withdrawal) - examples include distracting the adult, making excuses, faking inability, asking repetitive questions, delaying, etc
poor social skills when interacting with other children
at least some pretend play (only if age 6 or older, three had not yet developed pretend play at 3 years old)

Associated features:

switching between love/hate or showing both at once - switching between timid and rude, hugging mother while saying 'I hate you' in a pleasant voice, demanding mother's presence and then attacking her when she comes, etc
comes on too strong - too much eye contact, hugging people they've only just met, stroking other children, etc
echolalia (also seen in regular autism) - more often seen when very young, or when under stress
clumsiness (also seen in regular autism) - gross motor often worse than fine motor
identity issues - this one's hard to define, but examples would be never feeling embarrassed, 'doesn't seem to know he/she's a child', confused by mirrors or shadows, treating multiple people as if they're one person (one boy with younger twin brothers called them both 'the twin' without indicating which one he meant), etc
speech delay (also seen in regular autism) - often accompanied by a sudden 'catch-up' in late preschool years
passive in infancy
musicality - talent and/or interest in music, often first noticeable in infancy
sociability - when interacting with adults, the child seeks out interaction as much or more than most kids, although many show much less sociability in groups or towards other children
lots of pretend play, and/or mimicry or role-playing - they play pretend much more than most kids their age, treat pretend play more seriously (as if real), mimic other people, and/or act out roles such as teacher, disabled person, bartender, etc in social interaction
jargoning (also seen in regular autism) - they babble or string words together nonsensically, often seen in kids who can also speak normally

Diagnostic rule 1a - all universal features plus at least 3 associated features

Diagnostic rule 1b (for distinguishing from regular autism) - don't count the four associated features marked as 'also seen in regular autism'; all universal features plus at least 2 associated features

System 2 (a, b & c):

(Especially for distinguishing NS from regular autism.)

For each criteria, classify child as 'NS', 'autistic' 'other', 'NS/autistic' or 'NS/other' based on their mix of features. If their predominant picture is not listed here, count it as other.

1. Infant development (birth to 2 years):

passivity (NS) - child is inactive, doesn't show interest in playing, doesn't show much emotion, limp handed with toys, etc
lack of social response (autistic) - child avoids eye contact, doesn't socialize, resists physical contact, etc (if child's unresponsiveness seems due to passivity, don't count it)
irritable (other) - child cries a lot, seems easily upset, poor sleep (can coexist with passivity)
hyperactive (other) - child is busy, highly active, very curious, etc (may alternate with passivity)
normal (other) - child doesn't show any of the above, or any other abnormalities in behavior

2. Reaction to demands:

demand avoidance (NS) - child rarely, if ever, complies with direct commands
manipulative (NS) - child uses manipulative strategies to avoid demands, eg distracting adult, faking inability, etc
direct refusal (autistic) - child says 'no', shakes head, or otherwise clearly communicates refusal
compliant (autistic/other) - child usually complies with direct commands (the opposite of demand avoidance)
ignores (autistic) - child acts as if he/she hasn't heard the command
tantrum behavior (aggression, crying, etc) is seen in both regular autistic and NS children, and so is not counted

3. Social interaction:

sociable (NS)
identity issues (NS) - parents say 'doesn't know he/she's a child', confused by mirrors or shadows, etc
comes on too strong (NS) - excessive eye contact, overly familiar, etc
aloof (autistic) - ignores or rejects social advances and rarely initiates social interaction (the opposite of sociable)
poor nonverbal communication (autistic) - lack of eye contact, flat facial expression, lack of communicative gestures, etc
variable sociability (other) - sociable only towards certain people or in certain situations

4. Mood, attention and consistency:

mood swings, switching between love/hate (NS)
strong need for routine (autistic)
consistently distractible (other)
distractible only in certain situations (NS) - usually poorest attention when demands are made, best attention in areas of interest such as role-play

5. Pretend play and role-playing:

plays pretend (NS) - child spontaneously acts out events and/or stories using objects and/or self
role play/mimicry (NS) - child imitates another person (not just echolalia) or reacts in a situation as if they were someone else, often the child can describe who they're being
echolalia (autistic) - child repeats a word or phrase heard, immediately or after some delay
no pretend play or scripted pretend play (autistic) - child either does not play pretend, or acts out the exact same thing over and over (scripted pretend counts for both this and pretend play)
confuses reality and pretend (NS) - child seems confused by pretend objects, treats them as if real to an excessive degree, shows fear/ambivalence about pretend, etc

6. Speech development:

speech delay (counts as either NS or autistic, if sole feature rate as 'NS/autistic')
speech anomaly (autistic) - pronoun reversal, speech regression and/or other autistic language features not counting echolalia
catch-up speech (NS) - after initial speech delay, child's rate of speech development suddenly speeds up
repetitive questions (NS) - most commonly due to demand avoidance
normal or advanced language development, without any of the above abnormalities (other)

7. Obsessiveness (note: both role-playing and demand avoidance are typically obsessive, but are counted elsewhere):

social obsession (NS) - harrassing a certain person, obsessive interest in certain people or categories of people (eg public figures, disabled people), etc
order, sensory or informational obsession (autistic) - lining up toys, listening to music, numbers, etc (in children with multiple obsessions, can coexist with social obsessions)
not obsessive, or only demand avoidance and/or role-playing obsessions (other)

8. Neurological involvement:

clumsy (counts as either NS or autistic, if sole feature rate as 'NS/autistic')
normal/agile (autistic/other) - the opposite of clumsy
skipped crawling (NS) - child either went straight from sitting to walking, or used some replacement for crawling such as bottom-shuffling

Diagnostic rule 2a - criteria 2 must be 'NS', 'NS/autistic' or 'NS/other'; count up all other criteria with 'NS' scoring 2, 'NS/autistic' or 'NS/other' counting 1, and 'autistic' or 'other' counting 0; score of 5 or more means NS

Diagnostic rule 2b - same as 2a except criteria 2 also counted; score of 7 or more means NS

Diagnostic rule 2c - counting all criteria, child must score 'NS' on at least one and either 'NS', 'NS/autistic' or 'NS/other' on at least 5 criteria; criteria 2 must be 'NS', 'NS/autistic' or 'NS/other'

The Battle of the Two Caricatures

2010-12-23T08:26:00.000-08:00

I've started realizing something important about conflicts of opinion. And that is that it's not just two people disagreeing. It's also a clash of caricatures.

Cracked magazine has an article named 10 Things Christians and Atheists Can (And Must) Agree On. This article argues that atheists and christians should agree on things like 'celebrating the death of a guy you disagree with makes you a dick', 'people can do terrible things in the name of either belief system', etc. It's a great article, in the fine tradition of social commentary thinly disguised as comedy.
Numbers 6 & 7 are especially important. Number 6 is 'we tend to exaggerate about the other guy' and number 7 is 'we tend to exaggerate about ourselves'.

Number 6 is the well-known tactic of 'strawmanning'. Rather than address the real arguments of your opponent, you paint them out as having much more simplistic, extreme and refutable beliefs than they do. In this example, christians portray atheists as wanting to live in 'one long drug-riddled blood orgy' and atheists portray christians as wanting to 'abolish all science and live in grass huts'. These strawmen may, in some cases, consist of actual opinions held by a minority but applied to the majority, and in other cases, may have been completely invented.
Number 7 isn't so well known, but it definitely exists. I've seen it many times. It's so easy to get drawn into saying things you don't actually believe, just to refute your opposition. For example, I know autism isn't entirely genetic. After all, if 60% of identical twins of autistics are also autistic and 92% are somewhere on the broader spectrum, that leaves 8% non-autistic and 32% 'cousins', despite them having the same genetic material as an autistic kid. Something has to explain that difference. But when I see someone telling people to chelate their kids because they're convinced that autism is caused by mercury poisoning, suddenly I'm saying that autism definitely completely genetic. And I hate doing this!

It's easy for me to see both sides on the atheism/christianity debate, as a low-key atheist with nice christian parents. But it's not so easy for me to see both sides when it comes to autism, because I'm a neurodiversity supporter and proud of it.
But post like this one remind me of the importance of seeing past caricatures. When a curebie parent says that while neurodiversity advocates are wrong about autism treatments, they're right about 'mercy killings', that's a wake-up call to me. Just like awhile back when I made peace with a curebie mother on a listserv after we'd been fighting over biomedical treatment of autism, or when the host of an autism conference featuring Ron Leaf (a person marketing ABA) spoke at a conference on inclusion about how angry she was when her son's teachers used restraints on him.

So, here are a bunch of goals that both curebies and neurodiversity people, as well as people involved in other 'hot-button' debates, should try to meet:

get an understanding for how & why the other side could believe what they do - a good enough understanding that you could write an article faking that viewpoint and have it be convincing (as an author, I've had some practice trying this)
find at least one person on the other side who expresses an opinion you agree with, preferably something relevant to your topic of disagreement
examine what, in your life experience, has led you to believe what you do - thinking back on my life, it seems pretty obvious that the autistic daughter of a feminist who didn't want anyone to call her child disabled would end up as a neurodiversity supporter, right?
identify at least one time that you strawmanned your opponent rather than replying to their actual beliefs (it's possible you've never done this, but I doubt it)
identify at least one time you said something you don't think is technically correct, just to disagre with your opponent (again, it's highly likely you've done this at least once)

If we can all do this, then maybe we can find our way to a solution that holds to what each of us finds important. Remember, pretty much everyone involved in the autism community can agree on one thing: we want good things for autistic people.

Bobby

2010-12-22T15:10:00.000-08:00

Warning: If you're a fan of the TV show Supernatural, have not yet seen seasons 4 & 5, and don't like spoilers, then don't read this blog entry. It's a major spoiler.

Supernatural focuses on two brothers - Sam and Dean Winchester - who were raised by their single father to fight supernatural menaces, such as ghosts, demons, and many other things. In that world, most myths are true and out to kill people.

The amazing thing about this show is how well they do the characters. Their psychological reactions are all spot-on, exactly what a real person with that person would feel and do in that situation. It amazes me. I keep expecting them to fall into pitfalls (such as the dead loved one in the first episode being forgotten about) but they keep deftly avoiding them.

The brothers aren't the only ones hunting supernatural beings - there's a loose organization of 'Hunters' - and when their father dies, Sam and Dean form a close bond with one Hunter, a man their father's age named Bobby. It's pretty obvious that Bobby is a surrogate father to those two, and a better father than their real one ever was.

And then, in the midst of a fight, Bobby gets stabbed. He's rushed to the hospital, and once they've got him stabilized, they realize his spinal cord is severed. He'll never walk again, the doctors say.

So, I'm expecting the usual. Either Bobby will be miraculously cured, or he'll die soon - maybe even suicide, or assisted suicide. But neither happens. Castiel, the one character both willing and able to heal him, gets partially depowered before he gets a chance to do so. And though Bobby contemplates suicide, he doesn't act on it.

Several episodes later, they meet a Poker-playing male witch. But instead of betting money, this witch bets years. If you win, you get unaged the number of years you won. If you lose, you age that many years, and those years get added to the witch's lifespan. Considering that this witch is several hundred years old, it's clear that he's good at Poker.

Bobby gets an idea. If he were to unage, he might get his mobility back. Unfortunately, the minimum bet is 25 years, and Bobby's not a young man. He plays the witch and loses, instantly becoming elderly. Dean decides to play for Bobby's sake and gets Bobby back his 25 years, but loses 50 himself. (Dean is 30, so that means he's instantly 70.) He spends a large chunk of time discovering the various unpleasant aspects of being old, until Sam finally plays the witch and wins, getting Dean back to normal.

At the end of this episode, Dean realizes that his stint as an old man has given him a bit of insight into what acquiring a disability might be like. He talks to Bobby about it, and Bobby describes how useless he feels now that he can't fight. At which point, Dean says that Bobby's not useless, admitting that if Bobby were dead, he'd fall apart emotionally.

They laugh it off, but one thing becomes clear. Bobby has decided to live. He's decided to accept his disability and deal with it. It's not cure or die for him anymore - he can live this changed life. He's clearly not happy about being in a wheelchair, and he'd accept a cure if it was offered, but it's not essential anymore.

How many shows have a character, midway through the series, getting permanently disabled and living with it?

My Wall

2010-12-21T08:33:00.000-08:00

When I was a preschooler, my cousins, living with us in kinship foster care, sexually abused me.
I was a good kid. I didn't tell anyone. I don't remember that time, but I suspect I didn't realize they were doing anything wrong. After all, I was under 3 when it started. And to them, it was natural. Their father had trained them, groomed them to do the same as he did (he liked bringing people down to his level, so they couldn't criticize him). It probably never occurred to me that once I knew how to talk, I could've told Mom and Dad and they'd have stopped it. I did show it in my behavior, masturbating, regressing and acting depressed, but the counselors assurred my parents that nothing was wrong.
The lesson came in a series of events when I was 5-6 years old. The older of my cousins had already left by then, so this was about her brother. He sexually assaulted a classmate at his high school. He'd been a constant problem at that school, but this act was especially bad. And my parents suddenly realized that I wasn't safe, living in the same home as a teenager willing to engage in that behavior.
So off he went to another foster home. Realize this: my parents still didn't know what happened to me - they only suspected, and they weren't willing to take the chance that their suspicions were unfounded. But a year later, he confessed. Charges were laid, the police came to take my statement, and I told them everything. (My older cousin never got charged, because it was only my word saying what she'd done and they didn't want to put me through a trial, but telling still was powerful.) And I learnt that if something hurts you, it's not OK, and you have a right to protest it.
Around this time, I was attending school. As a traumatized, undiagnosed autistic kid with a subtype of autism that causes a phobia of being controlled, I was obviously not your typical student. And my school decided they wanted to stamp out everything that made me hard-to-manage or unusual.
But I'd learnt my lesson - don't let someone else's demands take precedence over your self. And so I learnt to build the wall.

I have a collage I made as part of a therapy program. I actually made two collages, which portrayed different pictures of myself. One accidently turned out as the four parts of self (mind, body, emotions and spirit), much to my surprise. The other one, which is the one relevant here, depicts the wall.
This wall isn't a bad wall, like the one in Pink Floyd's album. I can put it away when I'm safe, so I can accept love and caring. It's a good wall, that shields me from damaging attitudes.
In the collage, I cut out three categories of pictures. There were simple things that I liked. A disabled woman laughing with a friend, a beautiful dog, something sparkly, that sort of stuff. On the other side of the page was stuff that bothered me: a man precisely measuring his trimmed bush, an aging woman with her flaws pointed out, a fat woman in a 'before' picture of weight loss, etc. And in between is the wall, with a feminist cartoon, a story of a mother advising her son to help an unhappy classmate, a cat and a dog reacting differently to a command, and so forth. That wall is necessary. Without it, the bad outside would touch the good inside, and damage it.
The wall leaks, unfortunately. And sometimes it blocks good things from coming in, like when I have a meltdown. But it's much better than letting everything in, like I used to do.
This post is for the disability blog carnival, theme 'let your freak flag fly'. So, what does it have to do with that topic? Well, the wall is my freak flag. That's how I block their attacks. It long predates my diagnosis, so only recently have I applied disability language to my wall, but before then, I talked about unfairness, about being myself, about how they were wrong and I was right. When they tried to rush into my heart and rearrange things to their liking, I put up my wall to stop them.
It was never much good at attacking back - I'd try to persuade them and they wouldn't listen, probably because I was a child and kids are stupid - but there was no force of arms that could bring that wall down once it was up. I could out-stubborn anyone, mainly because my sense of self depended on it. My mantra during these fights was 'they can't kill me', meaning that I'd get through this and have freedom later on.
This wall is why I never seriously contemplated suicide, despite sometimes wishing I was dead. This wall is why I went to college despite my teachers thinking I'd never succeed there. This wall is why I've only shoplifted once and returned the stuff with apologies the next day, despite my teachers saying I'd be a juvenile delinquent by the age of 16. This wall kept me safe throughout my childhood. And though I'm learning how to not bring it out sometimes, I'll never let it go, because I might need it someday.
Oh, and one last thing: I couldn't build the wall by myself. My parents provided the scaffolding when it was weak and new, and the foundations keeping it from crumbling. If they'd ever joined forces with my teachers, I think the wall would have come down.

Reply to Shiva's survey

2010-12-20T10:44:00.000-08:00

Shiva is presenting a paper soon, and has a list of questions for autistics. I tried to post my answers as a comment, but it was too long, so here's my comment below:

I'm jealous - I was planning to send in an application, but got overwhelmed by schoolwork.

Anyway, survey questions (feel free to quote me):

"1) How would you choose to identify in terms of your neurology (eg. autistic, Asperger's, "cousin", self-diagnosed autistic, etc.) (multiple answers acceptable!)"
Autistic. Sometimes 'demand avoidant'. Though my official diagnosis is PDD NOS, that label has pretty much no relevance to me. I think there could be reasonable divisions between autism subtypes, but the DSM currently doesn't recognize them. Demand avoidant is one example of such a subtype. Another might be nonverbal learning disability/autistic (which currently mostly overlaps with AS). I'm not sure what others there are.

"2) Do you identify with a particular political "label" (eg. Marxist, anarchist, radical feminist, deep ecologist, etc.) (multiple answers acceptable!)"
Autistic rights activist. I also call myself a feminist, but that's not a big part of my identity.
"3) What drew you to radical social activism?"

Well, firstly, my Mom's a feminist, so I was raised with it. My foster siblings/cousins (kinship foster care) sexually abused me, and when my parents found out they took action to protect me and encouraged me to speak about what happened, so I learnt that if you talk about what hurt you, things can change. Then, in school, I was acutely sensitive to my teachers' abuse of power (partly because I'd already been abused, and partly because demand avoidant kids are like that) and the only way I knew to handle it was to fight back. My parents' support ensured that I never thought the school was in the right, never believed what they told me about myself.

With autistic rights, specifically, it was discovering my autism that did it. Several teachers figured something was different about me, one even guessed Asperger Syndrome, but my parents didn't think there was anything wrong with who I was. They finally started homeschooling me, and independently I discovered autism and autistic rights, and at the same time I recognized myself.

"4) Do you think that there is a connection between your neurodiversity and your activism? If so, what do you think that connection is?"

Besides the fact that I'm fighting for the rights of people like me?

Well, demand avoidance definitely is linked to activism. We're like the 'canary in the coal mine' when it comes to power dynamics - what hurts others in subtle, hard to pinpoint ways is blatantly obvious and meltdown-inducing for us. We basically either fight back or go nuts, we can't just put up with it.

"5) Can you describe any particular experiences (whether positive or negative) of being autistic in radical spaces that stand out to you?"

When my mother and I presented at the association for research on mothering conference. The topic was 'motherhood and war' and we were presenting on the war on autism. It was amazing to see all these people understanding what we were saying, and why we were concerned about this. Also, I met a parent whose son had a late diagnosis for the exact same reason that I had - she had to accept neurodiversity before she could believe an autism diagnosis.

"6) Do you think that the radical social movements you are involved in are a) aware of autism and what it means and b) accepting of autistic people? If not, why not?"
Well, since I'm involved in the autistic rights movement, yes.

Feminists, on the other hand, sort of vary. Some are very willing to listen, others aren't. It seems like in every activism movement, there are two kinds of people: those who support rights for everyone, and those who only support rights for their chosen group.
"7) Do you think that radical social movements/spaces tend to provide an environment that is better or worse suited to autistic people than mainstream political society? If so, why? If not, why not?"

Autistic rights movements do, mostly, though different subtypes can run into conflict. Other movements are often, but not always, more accepting.

"8) Is there anything else you can think of in your personal experience that is not covered by the above questions, but is relevant to this paper?"

Nope.

Wheelchair Bowling and SPSS

2010-12-15T08:29:00.000-08:00

For a psychology degree at my university, you need to take two statistics classes. I'm currently awaiting my final exam in the first of those two. In the course of this class, I was introduced to Statistic Package for Social Sciences (SPSS), a computer program for doing statistical analysis. (And something I desperately wished to have when I was 14!)

My best friend and classmate invited me to go bowling with her last Friday. She has CP and uses a wheelchair. In case you don't know, the usual accomodation for someone bowling in a wheelchair is to give them a T-shaped wooden thing they can put on their lap, and let the ball roll down that thing to propell it along.

Anyway, my brother claimed that using the T-shaped thing would make the game considerably easier, so I decided to test that. Half of the time I bowled standing up, and half of the time I bowled sitting down with the T-shaped thing. My friend, of course, used the T-shaped thing every time. I kept records on our scores, and plugged it into SPSS.

Here's what I found:

T-test for my scores sitting vs standing:

N was 10 for both groups. My mean score while sitting was 10.3, with a standard deviation of 2.79 and a standard error (mean) of .88; for standing, the mean was 4.6, standard deviation 4.35 and standard error 1.38. On the face of it, then, it seems like my sitting scores are higher.

SPSS does two forms of the T-test - one assuming the standard deviations of the two groups are equal, and one assuming they're not. It also runs a test to decide if they are equal or not, and based on this test, we decide which set of data to pay attention to. In this case, the variances were equal (significance .277) so I used the data for the equal-variances form of the T-test.

Mean difference between my score sitting vs standing was 5.7. The 95% confidence interval for this mean was 2.27 to 9.13 - this means I'm 95% certain that the true difference in mean score between my sitting and standing scores is between these two values. Since 0 is not within the confidence interval, the probability that there is no difference between sitting and standing scores must be below 5%. This is confirmed by the p-test, which gives the value of .003 (in other words, 0.3%).

So I can reject the null hypothesis - my scores are significantly higher when I'm sitting than when I'm standing.

T-test for my scores vs my friend's scores:

N was 20 for both groups, since I lumped together my sitting and standing scores. My mean score was 7.45, with a standard deviation of 4.61 and a standard error of 1.03; my friend's mean score was 6.15, with a standard deviation of 4.32 and a standard error of .97. On the face of it, my score is slightly higher, but it's awfully close. (Incidentally, this is bunched together from two games - my friend won the first and I won the second.)

The test for equal variances spit out .817, so it's very likely that both me and my friend had the same standard deviation of scores. (As you can see by simply glancing, the standard deviations are very close.)

Mean difference was 1.3, with a 95% confidence interval of -1.56 to 4.16. This range includes 0, so I'm more than 5% certain that there's no difference in mean score between me and my friend. The p-test confirms this with a value of .363 - well above .05.

I can't reject the null hypothesis - we don't have any evidence to claim our overall scores were different.

T-test for my sitting scores vs my friend's scores:

Remember, my friend was sitting for every round, and I've already shown that my sitting scores were higher than my standing scores. So, if we only compare rounds done while sitting, what do we get?

This is actually pretty tricky to tell SPSS to do. I had each data point marked both by who was bowling and whether they were sitting or standing. There's an option to split the file by a certain variable, so you calculate multiple groups as separate data sets - I told it to split by sitting/standing. Then I ran the t-test by person bowling. It actually tried to run separate t-tests on both sitting and standing, and spat out an error for standing because my friend didn't have any standing data points. But I didn't care about that.

I'm not going to review the means, standard deviations and standard errors, because I've already reported those. So let's get on to the equal variances measure. This is interesting - it spat out .011. That's lower than .05, so the standard deviations are probably not equal. My friend's standard deviation was about twice my standard deviation (even though it should've been smaller since she had a larger sample size). This indicates that her scores were more variable than mine.
Mean difference was 4.15, with a 95% confidence interval of 1.46 to 6.84. That doesn't include 0, so our means are unlikely to be the same - the p-test reported .004.

So I can reject the null hypothesis - when both bowling the same way, my scores were significantly higher than my friend's scores.

Conclusion:

What have I found out? Bowling with a T-shaped thingy is easier than normal bowling, and I'm better at bowling than my friend is. (Then again, she does have significant upper-body impairment, which is why she uses a motorized chair rather than a manual.) Neither of us is particularly good at bowling, not that it matters since we both like playing regardless.

And SPSS is really fun to play around with. I'm going to love being able to do actual psychological research, which I'm apparently going to start doing in 3rd year.

Tattling

2010-12-01T08:06:00.000-08:00

I've never understood it.

As a grade 10 kid, a victim of bullying, one of my names was 'tattletale'. I knew that my classmates weren't supposed to trip me and shove me and call me names, so I told the teachers about them doing this. Not just once, many times. I finally gave up because the teachers weren't doing anything to stop it, but I still considered telling to be the right thing to do. I honestly believed the only people who thought being a 'tattletale' was a bad thing were bullies and other misbehavers. If you'd asked me back then if any adults were opposed to tattling, I'd have said only criminals were like that.

Apparently, I was wrong. I don't get it. How can an authority figure, who takes their position seriously, not want to be told of possible rule infractions? Sure, kids may, out of confusion or malice, report things that aren't really a problem. So what? You don't have to act on their report. If they're outright lying, that's a problem, but that's not tattling - it's lying. Tattling is informing an authority figure of a true behavior (for certain values of true, since it may depend on perspective) that you believe to be a rule infraction. And if you can trust the authority figure to have good rules and enforce them, then talking to them about rule infractions is clearly the right thing to do.

Besides, what about the kids who don't tell? 'Mike touched my private parts and I didn't want him to.' 'Jimmy's planning to bring a gun to school.' 'I think Susan's drinking too much.' 'Kyle's talking about killing himself.' 'I saw Laura beat Joanne up.' All those are potential messages you might be missing out on, if you discourage kids from talking about other kids' infractions. And the consequences of that are much worse than some minor annoyance.

Some people say that you should tell kids the difference between tattling and reporting, where tattling is stuff the authority figure doesn't want to hear and reporting is what they do want to hear. I say, don't confuse the issue just because you're sick of kids telling you that their classmates gave them a funny look or made a burping noise. Tell the kid that they're allowed to do that, if there's nothing wrong with it; or advise them on how they could resolve it on their own, if it's a personal dispute. But never discourage kids from telling you what's going on.

Remember, the research on bullying shows that teachers, despite thinking they have a good idea of what's going on in class, actually know only about 40% of what happens. Make sure you get told the remaining 60%, or you might be surprised by a suicide or other disaster.

Sleep is a Slippery Thing

2010-11-23T14:43:00.000-08:00

(This is for the disability blog carnival, the topic of which is 'long nights'.)

For as long as I can remember, I've had insomnia. I've never stayed awake all night (not even when, as an experiment, I deliberately tried to do so) and I don't have trouble sleeping every night. My insomnia, therefore, is mild. But still, sleep is something I have to work at.

If the conditions aren't right, then I have trouble falling asleep. I need to be in a familiar place. I need a book to read, or else music I like on a playlist or an interesting radio piece. Boring reading doesn't help me sleep, because either I don't read it, or the effort to read it is enough to keep me from relaxing. But if I think something too interesting, it'll keep me up as well. And worrying about being sleep-deprived is almost the worst thing I could do.

Part of it, undoubtedly, is executive functioning. I have a poor time sense, so I may easily stay up too late without realizing it. And my difficulty shifting attention extends to difficulty 'turning my mind off' when I need to sleep. Giftedness also plays a part in this, since gifted people often have very active minds. Sensory processing issues are also relevant - the 'princess and the pea' problem.

But I think a bigger part of it is trauma.

I can't remember the sexual abuse I suffered. I know it happened (for one thing, one of the culprits confessed), I know I used to remember it, and I can feel it in my instinctive beliefs and feelings, but I can't remember it. Still, from what I've pieced together, I know at least some of the abuse happened at night.

I had an alarm on my door, to stop my cousin from getting in. He figured out tricks around it, such as making it look like I'd wandered out and set the alarm off that way.

I was afraid of the dark for a long time, to the point where I needed my bedroom light on. Now, I mostly keep a light on to read by, but if I let myself think about it, the darkness still scares me somewhat. Every shadow becomes an enemy creeping towards me. I can't just close my eyes or they'll get me.

If I have an argument with my parents late at night, I can't sleep until we resolve it. Even if that means them not sleeping. Unfortunately, sleep-deprived parents aren't as good at calming down their child, so this tends to be extremely unpleasant.

But despite all that, most of the time I sleep well. I have my routine and it works. And once I get to sleep, I get the joy that is dreaming. Many of my best ideas have come from dreams. Even nightmares give me a glimpse into my own needs, and some of them become interesting (though emotionally intense) stories. And when I wake up, I feel like myself again, ready to go out and deal with the world and all its excitement.

Things To Do If You're My Teacher

2010-11-15T07:29:00.000-08:00

Earlier this month, I posted a blog entry about things not to say if you're my teacher. One commenter recommended that I write a complementary blog entry, about things to say if you're my teacher.

Firstly, the prior post was solely things my teachers have said while in conflict with me. By the time it gets to that point, it's probably already too late. So this post is divided into two pieces: how to prevent conflict with me, and how to resolve it.

Preventing Conflict:

Be flexible. As much as possible, have preferences rather than rules. For example, some psychology teachers like to get their students to write on a work of fiction, usually a movie, related to a psychology topic. I hate these assignments. In three classes, my teachers gave me an assignment like this, and with one of them, I dropped the class over it. The professor whose class I dropped had a list of movies, and we had to pick one of them. We could suggest movies, which might be added to the list for later classes, but we wouldn't be able to write on them. I panicked, fearing that I'd have nothing to write about any of those (ironically, after dropping the class, I got a great idea for a paper about one of the movies). One of the other professors had no recommended list. The other class had a recommended list, but we could do a different topic if we discussed it with the teachers and got approval. In that class, I wrote on one of the recommended works.
Explain reasons for rules. Some things you can't be flexible about. I understand that. Just tell me what's so important about it. As I said in my previous post, if you can't give me a reason why you're insisting on something, I assume you have no good reason. I'm highly intelligent, I'll be able to understand your explanation. And I'm not going to take it on faith that you have a reason, because I know many people's 'reasons' include things like 'that's how I've always done it' and 'I don't like this student so I'll make things hard for them'. Not all people are reasonable, objective and fair. Prove to me that you are.
If I see a flaw in your reasoning and point it out, judge my statement on its own merits. Just because I'm the student and you're the teacher doesn't mean you're right and I'm wrong. And you should be willing to learn from anyone. Remember, also, that I'm not trying to be offensive by pointing out a flaw - I'm trying to reach an agreement with you. If I've misunderstood, explain that to me calmly. If I haven't, then think it over yourself.
Don't treat your students equally. This sounds really counterintuitive. But your students are individuals. Every one of them is of equal worth, but that's the only thing that's equal about them. Some of them learn faster than others. Some learn in different ways. Some are talkative, some are afraid to speak up. No matter what you try, you'll never get all your students to act the same way and learn at the same rate. And if you instead try to figure out how everyone works best, they'll all benefit. I understand that in a larger class, this is a lot of work. Being flexible is one shortcut you can use, especially when teaching students who are mature enough to know themselves well. Also, identify the unusual students, since they're the ones who miss out the most when everyone is treated equally.
Listen to me about my disability. I've lived as a demand avoidant autistic person for 21 years, and as a person with PTSD for 16-20 years. I've been learning about PTSD since I was 6, and when I started figuring out about autism, at the age of 13, I obsessively researched that too. And since I've lived both conditions, I know things about my own experience that no one else can know. Unless you have psychic powers, there's no way you know my particular mix of disability better than I do. This is the main reason I tend to prefer people who know absolutely nothing about autism over people who have some experience with the condition - because most people who don't know anything about autism know that they don't know, and therefore readily accept that I know more about it than they do. And remember that even if you've worked with autistic people your whole career, each of us is an individual, and autism is quite variable. Furthermore, I have a rare kind of autism.

Dealing with Conflict:

Pay attention to my feelings. The conflict starts with a concrete problem. But my PTSD and demand avoidance cause it to develop a very strong overlay of fear, shame and betrayal. If you give me a practical solution while ignoring the emotional overlay, it won't work - even if that solution is just fine. The teacher who had a set list of movies, when I kicked up enough of a fuss, changed the assignment for me. But by then, she'd already said some hurtful things to me, and made it abundantly clear that she was only accommodating me because she felt she had no other option. Because of that, I no longer trusted her enough to continue attending her classes. A lot of people seem to miss this, when having conflicts with me. They assume that if I'm still upset, then the solution they suggested must not be effective. This is not necessarily true, as I'll readily tell you in such a situation.
Try to stay calm. I'm working on learning to speak civilly when I'm extremely upset, but that's not easy for anyone. When I'm upset, I'm pretty blunt, and what I'm thinking of you is probably not flattering. Remember, to me, it doesn't feel like just a minor conflict - it feels like a life or death situation. I'm not exaggerating here. I honestly feel like I'll die if someone else controls me too much. It's a phobia, like someone who screams at the sight of a tiny harmless mouse. It may not be reasonable to feel this way, but that doesn't change the reality of my feelings.
Work with mediation. I find it hard to reveal vulnerabilities to a person I'm in conflict with. I become extremely defensive, telling you only what you're doing wrong and never admitting that I, too, have faults. It can be very helpful to have a (somewhat) neutral party to talk to, someone I trust enough to reveal my faults to, and to explain precisely why I'm panicking.
Be willing to admit mistakes. Chances are, if you've gotten into conflict with me, you've made some important mistakes. If you're not willing to admit that to yourself, then you're likely to repeat those mistakes later on. And if you're not willing to admit it to me, I'm likely to expect you to repeat your mistakes.

What 'Family Values' Should Mean

2010-11-10T06:50:00.001-08:00

I've seen a lot of conservatives talk about 'family values'. Typically, what they mean is that only the traditional, nuclear family with a stay-at-home mother is acceptable. All other families are harmful to society as a whole.

That's not what family values should mean. It should mean valuing families as the foundation of a healthy childhood. Families hold our future, and how our families function determines what kind of adults will make up the next generation. And contrary to the well-known saying, happy families aren't all alike. Every family, happy or unhappy, is unique, because every individual is unique and families are made up of individuals.

Family values means setting in place policies to support families. Things like free, high-quality daycare, so families with single parents or with both parents employed can ensure that their preschool child is well cared for during the times that they're not available to care for the kid. Things like funding the school system, so they can afford to pay teachers well, and therefore raise the standards for teachers without suffering a shortage. And reducing classroom sizes, because it's a lot easier to treat 10 kids as individuals than it is to treat 30 kids that way.

And especially, policies to help the families and children most in need. Social services needs to be expanded and better funded, so that they can better distinguish between bad parents and struggling parents, and the latter can be helped rather than just losing their children. We also need more and better quality foster homes, and kids need to stay in a single home longer. We need more support for foster parents and adoptive parents, so they can manage the difficulties of caring for the children who are really hard to care for - especially since many of those kids became that way because they didn't have a consistent family.

We also need more support for parents of disabled children. We need schools that can teach unusual learners without damaging them. Better training, better funding and smaller classes would help with that. We need good quality respite care readily available for those children who are exhausting to look after. We need better services for disabled adults, because most disabled children grow up. And often when the services aren't there, parents take up the slack, caring for their child long after they've stopped being a child. And children usually outlive their parents.

We need a society that welcomes children, that supports and acknowledges the efforts of their parents. Instead of judging parents, we need to offer them a helping hand. We need to stop telling parents to be perfect, because no one is perfect. Instead, they just need to be 'good enough' parents. We also need to stop telling parents that their kids are damaged and offering dire predictions so we can play on their desperation. Desperate parents sacrifice things, and take risks, and the kids pay the price. We need to support parents to deal with what life brings them, and build something that works for their children.

That's real family values.

Things Not To Say If You're My Teacher

2010-11-04T12:25:00.000-07:00

I've noticed, in multiple different conflicts with teachers, that they always seem to say the same things. These statements always set me on edge, and my trauma-based 'friend-or-foe' detector immediately switches them to foe when they say this. I've known from a young age that these arguments are wrong, but it's only recently that I've started being able to articulate why.

Here's a list. I probably left some things out, because I've never formally worked on listing these statements before. And based on my prior post about advocacy bingo, I'm going to explain why each one is wrong for me, even though that's not the real point. The real point is how I feel when someone says these things to me, how they send me into panic. Note also that these aren't exact, it's possibly to vary the message slightly and still say the same thing.

"I've been teaching for 20 years" - About one out of 100 people is on the autism spectrum. Many are in special education classes, many don't go on to higher-level education. Within the sample of your students, therefore, autistics are probably uncommon. And my own subtype of autism, demand avoidance syndrome, is rare even among autistics, since Elizabeth Newson said most specialist schools for autistic kids would have only one or two PDA students. So it doesn't matter how long you've been teaching, I'm almost certainly your first ever PDA student. (Besides that, what guarantee is there that you've been teaching well for the past 20 years?)
"All the other students are doing it" - Again, I'm highly unusual. That does not make me any less entitled to a decent education. Furthermore, there is ample evidence to suggest that many people will do what an authority figure tells them to, even if it's clearly the wrong thing to do. My condition makes me somewhat of a 'canary in the coal mine' when it comes to authority figures, what I'm complaining about might be something others are silently putting up with.
"You won't be able to [some measure of living a good life] unless you can handle this" - When I was in elementary school, my teachers warned my parents that unless I learnt to obey their commands, I'd be a juvenile delinquent by the age of 16. Now I'm 21. My sole legal infraction was to steal a bead from a bead store when I was 11, and I confessed and returned it within a couple of days. You're a teacher, not a fortune-teller. Besides, even if you were right, I clearly can't handle that thing. I can't just wish away my disability because you want me to. When I was an elementary student, any teacher who tried to make me do any schoolwork at all ran into conflict with me, whereas in university, only 2 out of 11 professors had any significant conflict with me. I've come a long way, but it took a lot of time and a lot of work. I will continue to progress, but it will continue to be a gradual process.
"Just trust your teachers" - Not all teachers are trustworthy. I've learnt that the hard way. If you want my trust, you'd better earn it, not just demand it.
"Do it because I said so" - That's code for 'I can't think of any good reason for you to do this, but I'll demand it anyway'. If you have a good reason, you can explain it to me, and I will listen. I might agree to do it, or I might suggest a compromise that works just as well. But being an authority figure doesn't mean you're in the right.
"See? You can actually do this" - Sometimes, I can do something in one situation but not another, or can do one task but not a closely related task. And sometimes I can do something only if I'm not being forced to do it. Dark chocolate is one of my favorite snacks, but if you told me 'you have no other choice, you must eat this dark chocolate', I'd be unable to swallow it. Not just unwilling, unable. On the few occasions that I gave in to (or was tricked into obeying) an authority figure, panic filled me to the point where I just wanted to die. It's more intense than my worst flashbacks. Something deep inside of me is convinced that being controlled by another person is the worst fate imaginable. I can't reason with this feeling, and I can't tolerate it. Unless you've got a gun pointed to my head or something, I won't endure that feeling on your command.

A Stressful Day With Some Good News

2010-10-29T07:43:00.000-07:00

Since Hermes died of FeLV, we made an appointment to test Katrina for the same illness. She had it yesterday.

The good news: She doesn't have FeLV. Or heartworms, or some other things outdoor cats are at risk for. Nor does she have any abnormal physical signs apart from mild obesity - for a 10 year old cat, she's in excellent condition. And now, she's been vaccinated against FeLV, rabies and a bunch of other things, and they made us give her a de-worming pill just in case. (Though if she does have worms, I wonder how fat she'd be without them!)

I also found out several other things. The recent cold spell is enough to make a double-coated cat shiver, even in a heated car. Katrina sometimes drools when she's extremely upset. She doesn't like car rides, she doesn't like unfamiliar places, and she absolutely hates our cat carrier.

She also has a very strong hatred of vetrinary exams. Rectal thermometers and palpating kidneys appear to be her two least favorite parts of it, and she's willing to threaten biting to get the vet to stop. (It didn't work, though I got to see how good that vet is at dodging.) She's also leery of unfamiliar dogs, even if they are fellow patients.

But if you don't do anything weird to her, she's perfectly fine with a stranger petting her, even when she's very stressed out. And clinging to my shoulder gives her a lot of comfort, though her stress-related shedding really sets off my allergies. She doesn't try to bolt when in an unfamiliar place, instead she cautiously explores while keeping near me.

I also found out how stressful it can be, for someone as close to cats as I am, to spend most of the day with a stressed out, very expressive cat they've formed a strong bond with.

She needs a booster shot in 4 weeks. That'll be interesting.

Bingo!

2010-10-26T12:51:00.000-07:00

It seems to be really common for advocacy movements to develop Bingo sheets about what the 'other side' tends to say. Autistics.org has several here, and I kind of like them. But those Bingo sheets often give me an uneasy feeling.

And just now, I got an idea of why.

First, the background. I'm working on a story set in a universe where many mythological 'other worlds' - Faerieland, Heaven, Hell, Midgard, Olympus, etc - actually exist, as do many different gods. And then there's the Trickster, who is a mostly-neutral agent of chaos, just making sure that things keep changing. The Trickster isn't immortal, however, so he has to chose a successor, and he gets his six children to each try to change the world, in any way they choose. There's probably going to be a book about each of the kids, although it depends on how well they motivate me.

Anyway, I just had an idea, of saying that wisakecahk was the first Trickster, and based on this, one of the Trickster's kids decides to befriend a Cree girl and recruit her as a teammate. It's a spark of an idea that could help set me off into writing that story. But I'm worried that people will be offended by me, a white person, writing about Cree mythology.

So I was searching for stuff about cultural appropriation, and I found the Cultural Appropriation Bingo card. And I realized that several of the things on that card (arts always borrows, asked a person from that culture, doing it respectfully and contradiction with criticism of Anglo-centrism) are things I consider to be valid points. And the problem is, that card doesn't say anything about why they disagree with those arguments. It just says not to use those arguments.

For a person who does not know the issue, is not a part of the group affected by the issue, but earnestly wants to be respectful and understand their perspective, those Bingo cards are no help. They just attack, and shut down dialogue. I can see the usefulness of those cards for self-advocates, because those really are arguments used over and over, and realizing that can help take the sting from them - but some people really believe those arguments. And those people may want to understand why you disagree, may want to be an ally. Just telling them to not make those arguments does nothing to help them understand why not.

Now, some people may say 'it's not our duty to explain ourselves to others'. And sure, a random autistic or Native person or whatever group should not be expected to give impromptu lectures to the privileged on their differences. But if you put yourself out there and decide to be an activist, then you should be expected to explain. Not anything people ask, but those things that are relevant to your message. Furthermore, if you don't explain yourself, how can you expect them to understand you?

My website

2010-10-25T10:53:00.000-07:00

I had a website on Geocities, now it's gone. So I finally got my spoons together and started work on a new website.

Here it is.

I don't know how many people who read this blog have seen my website. If you had, or based on the below list, what do think is most important to restore?

I had:

some information about what it's like to have PDA
an incomplete database about various disabilities and differences
a collection of opinion articles, mostly about disability rights

And do you know of anything else that you'd really like to see?

Story Perspectives

2010-10-17T03:56:00.000-07:00

One of my ambitions in life is to write a story from the perspective of a nonverbal or minimally verbal person, who does not find an effective substitute to speech (except possibly at the very end of the story). And preferably have it be a story that would be suitable for a child or teenager to read.

I had an idea, for one autistic kid I knew, of finding a book about someone like him, and reading it to him to see if he'd show interest. I looked all around, and didn't find anything, apart from autobiographies.

One thing that has brought me great joy, is being able to find stories about people like me. The Wind Singer by William Nicholson has Kestrel, the protagonist, who has the same fear of being controlled and passion for what's right that I have. Other stories have kids who've grown up knowing they were different but with that difference being obscure and hard to pinpoint. Even when their personalities don't fit me as closely as Kestrel's, I resonate with their view of difference. And I'd like there to be stories for the kids with more obvious differences, as well.

But it's not easy for me to write these stories. I'm very verbal, and like many authors, I tend to unconsciously model characters after myself. I need to think of a good story to tell, that needs a nonverbal protagonist to tell it.

And for some reason, many of the ideas I do have for stories like that, are stories I wouldn't want to read to a child. A child being abused because she's a changeling, or a villain protagonist who's been depowered and is trying to cope. They'd be great stories, interesting stories, but they are fairly dark, and a child might find them upsetting.

So I'll keep thinking. Just as I was writing this, I had another great idea. Given my fascination with ghosts, why not write about a ghost who can't talk? I'll ponder that, and see what evolves.

Feline Leukemia Virus

2010-10-14T08:10:00.000-07:00

The results have come back - we know what killed Hermes. It was Feline Leukemia Virus (FeLV).

FeLV is a retrovirus, like HIV, and like HIV it can lie dormant for many years. As far as we can tell, Hermes was probably already infected when we first met him. It can be transmitted by grooming, biting, sharing a litter box or food/water (rarely), or nursing. Therefore, our other cat has been exposed, as has our neighbor's cat, and a cat we fostered while fostering Hermes. I hope none of them were infected. We'll be notifying our neighbors of the results soon, and have contacted the rescue program Hermes came from as well.

FeLV can apparently cause a variety of problems. It's the most common cause of cancer in cats. It also suppresses the immune system, leading to opportunistic infections. And it can impair the creation of new blood cells, causing anemia. The last issue appears to be what caused Hermes's death. An estimated .5% of all cats have persistent FeLV infection, while at least a third have antibodies against it (meaning they were exposed but successfully beat the virus). A vaccination is available (Hermes was actually vaccinated, which is why we think he got it before then - vaccination is useless if the cat is already infected). It's more common among city cats, since they're exposed to more cats, and especially common among feral cats (Hermes was caught at the site of a feral cat colony).

Information about FeLV:

http://en.wikipedia.org/wiki/Feline_leukemia_virus
http://www.vet.cornell.edu/fhc/brochures/felv.html
http://www.essortment.com/all/felineleukemia_retz.htm

My Dear Friend Hermes

2010-10-06T07:49:00.000-07:00

We got him from a cat rescue program. In retrospect, I'm not sure he should have been taken from his home - he was a very tame, very affectionate kitten who had a habit of wandering and lived in a rough neighborhood - but since that allowed us to meet him, I don't complain too much.

When I first saw him, I leapt on him and held him, exclaiming about how cute he was. I'm sure I overwhelmed him, but I couldn't help it. Once I calmed down somewhat, we started on the process of becoming friends.

He was so playful and quirky, like most kittens are. I'd send bottlecaps, quarters or small balls sliding across the floor, and he'd race after them, not bothering to be quiet. He used to run into the empty tub and chase his tail there, until we realized he'd taken to licking our toothbrushes and banned him from the bathroom. He had a habit of overcoming his fears - if something scared him, he'd avoid it for awhile, and then he'd become obsessed with it. He did this with our basement, for example.

He, quite simply, loved everyone, regardless of species. If a human came to visit, he'd come up and say hi (the only one he shied away from was the vet). My Mom let him play with our pet rats, and he'd pounce on their tails and lick them obsessively, but never hurt them. He took to new cats upon meeting them. When we moved him to our small town home and introduced him to our cranky tortoiseshell, she disliked him, but he gradually won her over.

And as he grew, he got more affectionate. He still had a habit of doing 'drive by cuddles', as we called them, but more and more he'd do long cuddles as well, or join us in bed. And he purred often and readily.

But something happened. We're still not quite sure what. For a few days, he had a bruise on his nose and was acting unusually nervous. I guessed that he'd hurt his nose and this had scared him, and tried my best to comfort him. He seemed to be getting better, and we let him go back outside again.

Then we left for our weekend visit with Mom (she is working in another town, so we have to have two households). After one of our previous cats got hit by a car while we were away, we'd decided to make the cats stay inside when we were gone, but we couldn't find him. Hoping he was just hiding, we finally decided to leave.

When we got back, we searched for him, but still couldn't find him. Then our elderly, hard of hearing neighbor, who has a cat of her own, came over. She told us that he often came to visit her, and she'd play with him. She told us that while we were gone, he came to see her and he was not feeling well - listless and unhappy. She made him a box to curl up in, and tried to give him food, but he wouldn't eat it. She didn't have any way to contact us, but she did her best to care for him. And then he died, and she put him in a metal box and left him on our property. She showed us where.

We don't know what killed him. He might have been hit by a car. Another neighbor of ours has a rat infestation, and he might have eaten a poisoned rat. It's the right time of year for anti-freeze spills, too. We don't know what happened to him, and we don't know if our other cat and our neighbor's cat are safe.

So both us and our neighbor are keeping the surviving cats inside. And we've taken his body to the necropsy lab at the vet's, so they can tell us what killed him. But the answer won't bring back my dear friend. He's gone forever, taken from us in his prime.

The Meaning of Love

2010-09-28T05:15:00.000-07:00

A parent of a PDA child asked me if I could recommend some of my blog posts that offered parenting advice. So, I went searching through my old posts.

One post I happened to find, Locked Out of Advocacy, had some comments on it that really bothered me. I happened to quote the book Before and After Zachariah, by Fern Kupfer, mother of a very severely disabled boy. As I said back then, she is possibly the most hateful parent of a disabled child I've ever seen. Yet several people posted in defense of her, claiming she'd done what was best for her son by institutionalizing him, and pointing out how severe his disability was (Fern never stated in her book what his diagnosis was, but one of the posters said he had Canavan's Disease - one of the few disabilities I do consider tragic).

I've seen this in other occasions, too. And I wonder if people really know what parental love is. I can have respect for a parent who makes mistakes, even very grievous mistakes, as long as they love their child. But there are some parents who do not love their children, and from what I've read in Fern Kupfer's book, I'd say she was one of them.

It's certainly possible for a loving parent to institutionalize their child. They may believe they have no other option, or that the institution can give their child a better life. I read one book, can't remember the title, where a parent decided to institutionalize her cognitively disabled child because she imagined what it would be like for her if the majority of people were geniuses, and decided she'd prefer to be with her own kind. I'm not sure she made the right decision there, but she certainly made it for the right reason. As did the mother I met on a forum, who had two seriously disabled children - one severely cognitively impaired child who had life-threatening seizures, and one bipolar child who was constantly attempting suicide - and she realized she couldn't keep both of them alive with the resources she had. She compared her decision to institutionalize one of them to Sophie's Choice.

But Fern Kupfer's husband once said, while they were contemplating institutionalizing their son, that it would be great if they had enough money to hire live-in caregivers, so she wouldn't have to take care of Zach, and he could stay in their home. And Fern replied that just seeing her son, with his severe disabilities, made her feel depressed. If they had that much money, she'd still institutionalize him so she didn't have to look at him.

Let me tell you, that is not how a loving parent feels when they look at their own child. My own parents have felt depressed thinking about my struggles, but when they look at me, they see this wonderful person who deserves the very best they can give. They do not see 'damaged goods'. And if someone said something like that about me, well, they'd have a fight. That's another part of how a loving parent feels - this sense of protectiveness, that this child is their responsibility and they have to ensure the best for their child. No one can be a perfect parent, but being a loving parent means wanting to be a perfect parent, because the thought of making a mistake that could hurt that wonderful person you're responsible for is possibly your worst nightmare. And this is what every child deserves. One or two people who will love them no matter what, will do their absolute best to give them what they need.

That's the meaning of love.

Public Health Care: A Message to Americans

2010-07-25T08:03:00.001-07:00

I'm watching the hue and cry over Obama's public health care plan, and all I can do is shake my head.
I'm Canadian. We've had public health care since the 1960s. And not the half-assed kind Obama is talking about, either - we go much further than that. With the exception of dental care and prescription drugs, no one pays anything to get medical treatment. The government pays it all. If I were to collapse in the supermarket and spend three weeks in intensive care, my only monetary loss upon discharge would be lost paychecks. I'd actually lose less money than if I'd spent those three weeks in my own home. And it doesn't matter how much money I make - the same service is available for a homeless guy sleeping under a bridge and for a millionaire who owns several companies.
We do not have euthanasia, or anything close to it. 'Your Grandma' actually lives longer under such a system, because you don't have to pay for her respirator, or pacemaker, or lengthy hospital stays. The patient or the family can refuse treatment, but that's true anywhere. And informed consent is a big deal to doctors.
When we first got public health care, people came in to the hospital with easily treatable conditions, such as fallen wombs and hernias, that had languished untreated for years. Many of these people had been rendered unable to work, and went back to work once they'd gotten treatment. Now, we tend to think of untreated hernias and such as something that happens only in third world countries - I was shocked to realize that it happened in the USA.
Our economy has not collapsed under the pressure, and we're not as wealthy a country as US is. In fact, our economy has been booming lately, and our dollar is currently on par with the American Dollar. Most Canadians have a decent standard of living - some are quite poor, some are very rich, but most are in between. It's a fine place to live.
So when I watch the hue and cry over public health care, all I can do is shake my head, and wonder why they don't just look to the north.

Giving a Child Away

2010-07-13T09:24:00.000-07:00

A recent news story describes how a 7 year old boy, recently adopted from Russia, was put on a plane and sent back to his home country by his adoptive parents. The boy apparently had serious behavioral problems, including fire-setting. Though I don't know much about him, I'm guessing he has Attachment Disorder, which is caused by loss of caregivers and/or extremely unsuitable caregivers.
Given that he's just gone through another example of the kind of experiences that probably caused his problems in the first place, this boy is likely to have been greatly harmed by this action. Studies have shown, however, that this is often a vicious cycle - kids who experience frequent placement changes in foster care often develop behavior problems as a result, and one common cause of placement changes is behavior problems. And if you're already having trouble trusting, it's even harder to get over something like this.
But I'm not one to say that you should never give up an adopted child. This particular example is quite innappropriate, since as far as I can tell they didn't even bother to notify anyone that they were sending the kid back. But if you go through the proper channels to ensure the child's safety, it is sometimes justified to give the child up. However, you should only do this if it benefits that child or another child in the household.
For example, my parents cared for their niece and nephew. They didn't adopt the two, but nevertheless planned on the placement being long-term. Most likely, they'd have kept them until they both moved out on their own. One of them, in fact, did, although prematurely - she ran away from home around 16-17 years old and didn't come back. The other one, however, my parents gave up.
They gave him up not because he was hard to look after (which he certainly was). When, in his late teens, he was charged with sexually assaulting a classmate, my parents suddenly reinterpreted my quiet and subtly worrisome behavior, and realized that he could be sexually abusing me. They'd put an alarm on my bedroom door, so they probably had concerns earlier, but the counselors kept reassuring them that I wasn't in any danger from him. This incident made my parents realize that they were wrong, that he was a danger to me. So they separated us, by sending him away.
And that was the right decision, even though it likely hurt him, and even though it taught me that my parents' support can be conditional. As it turned out, he was abusing me - he admitted it a year later, and when asked at that time, I told them about it. (I also revealed that his sister had abused me as well.) I got counseling from a young age, and learnt that my parents would protect me. And I didn't get any further abuse from him.
Recently, a guy my Dad knows kicked his teenage daughter out of their home. She's been going out with a drug dealer, driving drunk and getting into lots of trouble. At one point, they found cocaine in their house, that she was storing for her boyfriend. Part of their concerns was legal, since they could be charged with possession if drugs are found in their house. Part of it was how viciously this girl had been treating her mother, and how much difficulty she'd been having with coping. And partly, it's that she has a younger brother, whom she has been verbally abusing and who has been getting more and more depressed lately. He's expressed fear for his safety, and they're hoping he can get better now that she's out of their home.
It's sad that this problem has gotten so bad, and that they've been unable to find some way to help their daughter. But under the circumstances, I think they're right in kicking her out (though it would have been better to put her into some kind of care). My heart goes out to her brother, and his safety and well-being should be a major concern for them.
Note, however, that both of these cases involve teenagers. I think it's a lot more serious a decision to send a 7 year old child away. A teenager can live on their own with difficulty, and as such are less dependent on caregivers if they have them. A 7 year old is highly dependent on a caregiver, both physically and emotionally. Their behavior would have to be very extreme, and the caregiver would still have a very high duty to ensure their safety.
Another issue, that this case makes no mention of, is the issue of support. Was this boy getting counseling? Were his parents getting counseling? It's virtually impossible for an untrained parent to handle a child with serious emotional problems without fairly extensive support. And many of these parents get less unofficial support - who wants to babysit a kid like this? Who wants them to come and visit their home, or spend time with their kids? My parents said many people congratulated them on what a good thing they were doing in taking in their niece and nephew, and then refused to do anything at all to help.
Given that, official supports become even more important. A counselor to help the kid heal and advise the parents, and keep an eye on any other children in the home. A respite worker for when the parents reach their limit, because parents are people too and they really do have limits. A school system that is trained and able to handle that child (so the parents don't need to pick up the slack all the time), keep their classmates safe (even if that means them not having any) and educate them to the best of their ability. And that's the bare minimum, more supports are better. Most importantly, everyone involved should keep in mind that not only are they there to help that child, but the child's family as well.

My Changing Life

2010-07-12T15:48:00.000-07:00

I feel bad about not posting here as often as I used to. I know when this happened - it was when I started university. Such a good thing for me, but it's really cut into my time. Most of my 'facts and opinions' writing urges get expressed through essay assignments, and I don't get as much time for recreation as I used to, either.
But it's not just that. My focus has shifted. I don't feel the urge to jump into advocacy so often lately. Partly, it's that I'm more interested in fiction now - I've been hanging out a lot at TVTropes, and working on my stories. If something fires me up lately, I'm more likely to think up a story about it than a blog entry.
It's also that I'm seeing it less black and white. Rather than wanting to proclaim my own opinion, I've been wanting to understand the opposing views more. This is valuable, since better understanding will help me figure out how to reach those people, and show them what I see. And it enters into my writing, too, as the opponents in my stories get less one-dimensional, more complex and real. If I understand them, I can write them. I can put them in my worlds, and show the impact of their words and actions.
And most of my stories don't have a good guy and a bad guy. Just people with differing goals, needs, perceptions and desires, who come into conflict naturally because of how they differ. I don't always show the way to peace, either - sometimes, there is no way to peace. Not all stories end happily. I just try to paint the interactions, and use that to communicate my message.
My own life has become more important, too. It used to be that I didn't really care that much what happened to me when I got into advocacy. But now, I have classes to do well in, a career to aim for, a way to change things hands on, instead of just pontificating about them. And I have friends, who support me, teach me and admire me. The internet isn't so central to my life now, my self-expression now has many routes.
I may seldom blog, or I may stop entirely. But I will keep true to myself, and to my goal of making the world a better place. I plan on doing research that will help many people, asking questions about how it feels to be disabled in our society. How does an autistic child feel when his/her parent rattles off the child's impairments to a stranger? How are that parent's attitudes communicated to the child? Do nonverbal children notice and care if someone talks to them as if they were toddlers, and how do they express their reactions? What impact does abuse have on a person who is also the target of discrimination, and who naturally interprets information differently? Is FAS really the cause of serious behavior problems, or are those the result of the pain and loss these kids often suffer? Questions like these can be answered by research, and the answers are important to disability rights issues. So I will ask them, and I will find the answers.

Canary in the Coal Mine

2010-05-08T03:49:00.000-07:00

Ron Braund and Dana Spears wrote a book called Strong-Willed Child or Dreamer, describing a particular personality type known as 'dreamers'. Dreamers are highly creative, sensitive, empathetic and idealistic, and extremely stubborn when their ideals clash with reality. Throughout the book, they describe the dangers in trying to control a dreamer and the way to work with their basic nature rather than against it.
Their advice is effective - I know because my parents used it in raising me. But the overall message is that dreamers have fundamentally different needs than most kids. Most kids do fine with being told to do follow a rule without knowing the reason for it, and being expected to do things they don't believe in to get along. Dreamers don't.
But what if dreamers' needs aren't basically different? What if they're just the 'canary in the coal mine'? After all, the vast majority of activists are probably dreamers, and many of them have insisted on changes that benefit others who never complained. For example, most black people put up with Jim Crow and got on with their lives, while a group of black dreamers fought back. And just because most blacks were willing to sit at the back of the bus didn't mean it was fine for them.
A good illustration of this idea occurs with Kestrel Hath in the fantasy book The Wind Singer by William Nicholson. Kestrel, along with her family, lives in a highly regimented city known as Aramanth, where standardized tests determine your social status and everyone knows exactly what they should be doing and is expected to do it without question. Kestrel is a dreamer, so obviously she has a great deal of trouble getting along with that, and through the course of the story she and her family instigate a revolution in Aramanth.
Kestrel's mother, Ira Hath, is a self-proclaimed prophetess (and another dreamer), and throughout the story she repeats the words 'oh, unhappy people'. She is referring not only to her family, who are indeed unhappy, but to all the people of Aramanth. And she is right. Although most people in Aramanth fit in to the social order and don't complain or cause trouble, they are deeply unhappy and need liberation. And the few who can't put up with the social order are the ones who liberate them.
This is why I get uncomfortable when people talk about dreamers having different needs. It means you don't need to examine the established social order - just make an exception for a few people. For example, children with pathological demand avoidance, who are basically autistic dreamers, react badly to ABA treatment. Since ABA treatment has been proven effective for most autistic kids, this is seen as meaning these kids need to be recognized as distinct from other autistics. However, many autistic rights activists have levelled accusations that ABA is unethical, and that forcing autistic kids to act as normal as possible is harmful to them in the long run. The best way to educate a PDA child is also effective with other autistic kids, and doesn't have the same ethical concerns*.
Treating dreamers like they have special needs seems to me like treating canaries as if they're the only ones harmed by carbon monoxide poisoning. The canary in a coal mine is useful as a signal of something that's also bad for coal miners. Similarly, dreamers often highlight societal norms that are problematic for many people, but tolerable to non-dreamers.

* Note that I'm not referring to the advice Elizabeth Newson has provided, which would not work for a standard autistic kid. I think rather than being indirect with commands, it's a better idea to simply explain the reason behind the command and convince the PDA child that your rule is a good idea. If they trust that you have good reasons for telling them what to do, they'll do it.

Abusers and Alley Cats

2010-04-06T07:48:00.000-07:00

I was just thinking about some of the troubled teens and aggressive children I've known (including myself), and it occurred to me that most of them fall into two very distinct categories, which I've decided to call 'abusers' and 'alley cats'.
The abuser type are kids who deliberately try to manipulate and hurt people, either to gain some advantage or for their own enjoyment*. These kids, if this problem is not dealt with, stand a high chance of causing emotional and possibly physical harm to others. Most of their aggression is directed at people weaker than them, and when they go after someone who is equal or greater strength, it's because they're confident enough to think they can get away with it. These kids are the minority.
The alley cat type makes up the majority of kids with behavioral problems. These kids are scared, overwhelmed, vulnerable. Their aggression is usually directed at people who have power over them, and when it's directed at someone weaker, it's because they overestimated the other person or underestimated themselves (for example, even though my brother is 8 years younger than me and very gentle, in the height of a meltdown I honestly believe he could overpower me). They're kind of like a feral cat - if the cat attacks you, it's not because they want to hurt you. It's because they want to make sure you won't hurt them.
These two types often engage in similar behavior, but they need pretty much the exact opposite sort of treatment. Abuser types need you to come down hard on them and make it clear that they will not get away with hurting others. Your primary focus should be making sure that other people (including yourself) are safe. Go ahead and act nurturing, but make sure they can't confuse it with weakness. If you treat them like an alley cat type, they'll tear you apart.
Alley cat types, in contrast, need to be cared for. Your primary focus should be making sure that they feel safe. Coming down hard on them for their behavior is counterproductive, because it will make them even more scared. Do what you must if they are endangering someone, but remember that if they don't feel threatened, they won't lash out. If you treat them like an abuser type, you will destroy them.
Given that, it's important to be able to tell them apart. This is tricky. Since the alley cat type is much more common, if you're unsure, assume they're an alley cat. But here's some advice:

Who are they aggressive towards? Alley cat types rarely aggress towards someone weaker than them, especially if they're much weaker. Abuser types rarely aggress towards someone who very obviously has the advantage, unless they stand to gain from losing the fight.
When are they aggressive? Alley cat types may seem to attack out of the blue, but if you look carefully, you can see something that overwhelmed or scared them. Their aggression is almost always reactive and fairly impulsive. Abuser types attack when there is an advantage to them, or completely out of the blue, and it is very often planned in advance.
Do they seem scared? Alley cat types who are in the middle of aggressing, especially when they're being more aggressive than usual, will often show signs of fear, particularly the signs that are hardest to fake (autonomic arousal, such as dilated pupils, rapid breathing/heartbeat without strenuous physical activity, hot breath or an odd smell). Abuser types might try to fake fear, but the less voluntary signs will not be present. In some cases, they will actually look like they're having fun. If you were to do a blood test on a child who's had frequent meltdowns in the past week, an alley cat type would probably show high cortisol levels.
How serious is their aggression? While any severity of aggression could be done by either type, as you get to more serious aggression, the probability that they're an abuser type gets higher. For example, the vast majority of serial killers are abuser types.

I have yet to see a child with a serious developmental disability who was an abuser type. It's especially unlikely with an autistic kid, because they're unlikely to think of trying to manipulate someone - and if they did try, their attempt would probably be so clumsy that you'd have no trouble figuring it out. The abuser types are socially savvy kids, and usually at least low average intelligence, whereas alley cat types can be anywhere in intelligence and/or social skills.

* Note that the name is a bit of a misnomer, since the milder abuser type kids might not actually abuse anyone, while a few alley cat type kids do abuse others (due to distorted perceptions).

Thanks to Feminism

2010-03-02T07:00:00.000-08:00

I've been struggling somewhat in my Women and Gender Studies (WGST) class. Given the current state of women's rights, and the current state of autistic rights, sexism for me is far overshadowed by disability discrimination. I really can't name much in my life that I think would have been different if I'd been an autistic boy instead of an autistic girl. The discrimination I've faced has been pretty much the same as what the boys deal with.
But it just occurred to me that although (or because) sexism hasn't made much of a difference in my life, feminism has. In fact, as an autistic woman, I've benefited more from feminism than most women do.
Here's why:

I love to read and write. For a long time, only men were taught those skills. As an autistic person, although I have generalized verbal strengths, my written language is better than my spoken language.
University is my niche. In university, high intellengence and passionate interests are rewarded, making it an area where being autistic can actually be an asset. However, universities were originally male-only, and there have been many barriers to women participating.
I'm no good at housework. I get overloaded easily when trying to clean, my OCD tendencies make me have panic attacks at the thought of cleaning up certain kinds of messes, my difficulty planning means I put things off a lot, and my asthma means that getting close to dust and mold can be bad for me. Nowadays, I have other areas in which I can show my competence, and I stand a chance of finding a man who is willing to do housework. I will not be seen as a failure just because I can't do housework.
I'm asexual. Although I haven't decided what I'll do with my life, since I do want children and my sexuality might awaken in the future, it's quite possible that I will never want to get married. It used to be that most unmarried women either depended on family or lived in poverty, with many being forced into prostitution to survive. Now, women can get into lucrative careers, and many single women are doing just fine.

So I extend a thanks to all the women from previous generations who fought for these rights I take for granted. You made my dreams possible.

Uncanny Valley Girls

2010-01-15T08:46:00.000-08:00

In robotics research, they've found that there's a general tendency for people to prefer robots who look more human. However, at a certain point, this tendency suddenly reverses - people find robots who look almost but not quite human to be creepy and somewhat repelling. This phenomenon has been dubbed the 'uncanny valley'. As many video game players can attest, the uncanny valley can also apply to digitally animated characters.
On the website TVTropes, they have a page where people provide personal experiences of the uncanny valley. I read this page through, and was disturbed to find the following quotes:

"This troper has a cousin with severe genetic defects. On the surface, she looks like an ordinary girl of her age. But spend even a minute in her presence, and the defects become apparent. Not only is she unable to stand upright without support and has seizures, but she is mentally retarded to the point that this troper isn't sure if she's truly sentient. She's like an animal in a human body - and yet she is kin.

This troper has a great-aunt who's mentally retarded to the point that she has the mind of a four-year-old... despite being in her late 50's. Every time his family goes to visit her, he can't help but be really, really creeped out.
Two Words: Tear Jerker.
That's why I can't substitute teach in EC, (what used to be called "Special Ed") classes. My empathetic side feels sorry for them, but every other instinct is calling for retreat. The exaggerated cheerfulness of the other teachers in there doesn't help. They pretty much have to do that to register on the kids."

"This troper has inherited her mother's very pale skin and tall, painfully thin build (aided by a metabolism running at the general speed of a Concorde), along with strabismus (more commonly known as 'squint') in the left eye. This makes it seem as if she isn't looking directly at the person with whom she is speaking (when in fact actually she is) and coupled with the rest of her inadequacies, it makes for a probably overall unsettling image. She has gotten used to the odd looks and sometimes rude remarks and generally tries to dispel them with good humor, an application of subtle self-tanning lotion and a pair of dark-tinted glasses when out in public."

"This troper Has always had issues with pictures of birth defects. Not so much disfigurements from an accident or something, just anything congenital or genetic. There's just something about humans being born looking inhuman that makes me feel like nature isn't to be trusted, and the world is a really squicky place on a primordial level. I saw a commercial for some Discovery Channel show about The Elephant Man when I was around eight, and... Well, needless to say, I didn't watch Discovery for a while after, and that commercial was literal Nightmare Fuel for me off and on for years after. Which probably means this is more like Nightmare Valley for me."

"Not sure where to put this, so I'll just put it here. Many/most Aspies (definition from the other wiki - by the way, no matter what it says, yes we have a sense of humour), This Troper included, both ignore the Uncanny Valley and fall victim to it. ... We fall victim to it in our interactions with those strange creatures known as 'neurotypicals' (you call yourselves 'normal' ;P), where many people pick up on something subtly 'wrong' about us and treat us according to their beliefs on 'different', varying from 'intriguing' or 'finally, someone interesting', through 'humour him, edge away slowly', all the way to 'DIFFERENT EQUALS BAD, DESTROY!'. I'll let you decide for yourselves what this does to someone over a lifetime."

"This Troper have met the Uncanny Valley in a bus. She (it?) looks like a young woman, but thinner than every single thin woman. She must be suffering severe anorexia, to the point were you can see her bones. Yeah, literally, all she got was some flesh left on her bones. Combined with a pale, cadaveric skin, and a black robe in wich she seems to float... Looking at her was like looking to a human skeleton. She was creepy enough, but then she starts to move, like a disincarnate puppet; her arms reaching slowly to the door, straight as two pieces of wood, shivering lightly. And then, she gasps. Ooooooh boy, that was Nightmare Fuel !"

These quotes, as well as some others, indicate that certain real, living people, due to various disabilities, fall into uncanny valley for some people. Does this mean they don't see us as really, truly human? Is this related to disability discrimination? Is it possible for these people to get over this reaction and learn to accept us anyway?

[Note: for those who have trouble with puns - 'Valley girls' are people from a certain region who have a distinctive way of talking ('like, gag me with a spoon'). I'm making a pun on valley girls and the uncanny valley to talk about people in the uncanny valley.]

Pity and Competitiveness

2010-01-14T11:04:00.000-08:00

There's a story floating around as one of those annoying chain letters. I don't know if it's a true story, or if it was made up. Either way, what I have to say still applies.
The story is from the perspective of the father of 'Shay', a developmentally disabled boy. Shay was playing baseball with some other kids, and out of pity, the opposing team all decided to throw the game in order to let Shay win. The actual story drags it out a lot more, but that's basically what happened.
There's a lot of things I could say about that story. But the topic of this entry is how the opposing team all assumed that Shay, if he realized he was by far the worst player on his team, would feel unhappy about that.
Now, if Shay was an undiagnosed disabled child, chances are high that they'd be right. I know that I felt bad about being so much poorer at sports than my classmates (although that was mostly because they teased me). Of course, if I realized the opposing team was deliberately making it easier for me, I'd be offended, but setting things up so I could get some degree of success in the game would be a good idea.
But from my volunteering experience, I'd say that most developmentally disabled people don't react this way. It wouldn't occur to them to think of themselves as better or worse at sports than another person, or if it did, they wouldn't put the same sort of value judgements on it. Not that these kids don't realize that they're different from others, or aren't able to make comparisons between peoples' abilities. It just doesn't seem to matter to them. Everyone tries to do their best, and no one cares whether X's best falls well short of Y's best.
I think it's a cultural thing. A lot of people don't realize this, but someone who is diagnosed with a disability in childhood grows up in a somewhat different culture than someone who is considered normal in childhood. Imagine a child getting therapy once a week with a bunch of other children with a mixed bunch of disabilities. In the therapy programs I've seen, it would be unheard of to give out a reward or praise to the kid who does whatever task the best. Sure, they give out rewards, but individually, not as a competitive group activity. Whereas I've seen plenty of regular schools do that.
In addition, since most parents want their kids to have high self-esteem, parents of disabled kids usually adjust their praise to focus more on effort than on outcome, or else praise kids based on how what they just achieved compares to their usual performance. In cases where the child's disability affects certain areas but not others, they often tell their children that their strengths are in the really important skills (such as Torey Haydn telling a dyslexic, highly empathetic student that 'you can't read words, but you can read hearts, and that's what's really important').
Lastly, many disabled kids hang out in groups of friends with wider ranges of ability than there are in most nondisabled friendship groups, because disabled kids often have disabled friends and disabilities are very variable. This means that among their friends, they learn to deal with diversity in ability a lot more than nondisabled kids do.
In the volunteering program I worked in, there was one girl - only one kid - who was self-conscious about her disability. I often saw her refuse to do physical activities because other people were watching. She was new to the program, and was very mildly disabled, and although I don't know her story, I wouldn't be surprised if she'd only been recently diagnosed. The rest of the kids (those who interacted with the other kids) never acted self-conscious. For example, I worked with a girl whose legs seemed to be different lengths, which meant she couldn't run very fast. Once, her and another girl decided to have a race, and the other girl easily left her far behind. She didn't get frustrated, instead she simply laughed because she liked running.

Dealing with Different Abilities

2010-01-12T11:15:00.000-08:00

I'm not sure if I mentioned yet that I've made a friend in one of my university classes. I sought her out to talk to because she's disabled (she uses a wheelchair). She also has a number of disabled friends, one of whom I've become friends with somewhat as well.
Anyway, she invited me to her birthday party. We went to a restaurant, four of us - me, my two friends and a third friend of hers. This third friend is more severely disabled and she can't feed herself, so our mutual friend fed her.
I was struck by how different it is when a disabled person gets that sort of assistance from a friend instead of a caregiver. There was none of the 'staff' body language, that sort of signals 'I'm helping you, you need help and I'm the person who gives help'. They weren't going into the 'helper'/'helped' roles, they were both in the 'good friends' role instead. Even though one of them was helping the other, it was clear that they considered each other equals.
Which shouldn't be that strange. After all, friends help each other all the time without any kind of power imbalance occurring. But people tend to treat 'special' help, such as what a disabled person needs, differently from ordinary help. Which gets me to a more general thought: the root of disability discrimination is treating disability like it's a big deal. It should be seen as just some traits that certain individuals have, just like being blond or bad at math or musical or athletic or whatever. Just part of the variation between people.
One interesting thing I've noticed, in my obsession with supernatural fiction, is that many fictional characters deal with supernatural abilities and liabilities this way. One example is in the TV show Angel (about a good-guy vampire), at one point Angel comments that his friend Lorne's driving is really bad, and Lorne teases Angel about not being able to drive during the day because he needs to cover himself in a blanket to protect from the sun. Even though Angel seems to have a more negative view of vampirism than how many disabled people view their disabilities, it's still a safe topic for friendly conversation.
Another example is in the Whateley Academy stories. The story focuses on a special school for kids with superpowers, kind of like X-men. And while they treat the kids in Hawthorne cottage, who have seriously impairing kinds of superpowers (eg a shapeshifter who turns into jelly if she doesn't concentrate on holding any form), like disabled people, the rest of the kids all have different abilities and don't make a big deal about it. For example, Team Kimba, who are the focus of most of the stories, initially had only two kids who couldn't fly. Once, they were hurrying to a battle and realized they'd need to carry one of the non-fliers because otherwise he'd get there too late. The only awkwardness about that was related to having a very pretty girl in physical contact with a heterosexual male teenager, not about the difference in their abilities.
It's interesting how people seem to be able to manage writing this dynamic with abnormalities in fiction, but they don't seem to realize that this applies to real life. In most cases, when they have a real life difference present, the characters react very differently - for example, in Buffy the Vampire Slayer, Buffy was freaked out by Willow coming out as gay, while Willow and Xander hadn't reacted that way to Buffy telling them she was a vampire slayer. In a few cases, they deal with fictional abnormalities according to how real life abnormalities are stereotyped, such as with the students in Hawthorne. But I've yet to see a fictional portrayal of a disabled person who doesn't treat their disability as a big deal, even though it happens in real life.

Types of Giftedness

2009-12-14T07:42:00.001-08:00

A lot of people treat gifted kids as if their cognitive skills are equivalent to an older child. In other words, they'd think that a 10 year old with an IQ of 150 would do just fine being taught grade 10 work for a year. Some people understand that gifted kids learn faster, and so that kid should, by the end of the year, be halfway through grade 11 instead of just finishing grade 10.
But a lot of people don't understand that gifted kids don't really learn faster, instead, they learn more efficiently. Meaning, basically, their mental processes aren't the same thing sped up. They are actually learning in a qualitatively different way, a way that allows them to process more information in the same time period.
In my impression, there seem to be two common types of talents resulting in a kid being considered gifted: memorization and comprehension.
Imagine a kid, considered gifted, who has normal comprehension and better memorization. If you got this kid and a typical kid and gave them both some information that was completely new to them, they'd both understand it about equally well. But test them two days later, and the gifted kid might remember it while the typical kid's completely forgotten.
Furthermore, this memorization ability helps them learn new information, too. Imagine teaching those two kids a second lesson that builds on the first. The typical kid will probably need to be reminded of what xe learned in the first lesson, basically retaught the first lesson (though more quickly than the first time). The gifted kid will still remember everything in the first lesson and won't need the reminders, meaning you could spend that whole time on the second lesson.
Secondly, regarding comprehension, imagine a kid with improved comprehension but normal memory. When this kid and a typical kid are taught something new, they'll both remember what they learned about equally well. But in the first lesson, this kid will need less spelled out explicitly, and will be able to extrapolate more on xyr own. Therefore, it would take less time to explain the same concept to this kid.
And at the second lesson, both kids will need a recap of the first lesson. But when you're reexplaining something the kid has learned but forgotten, you can do it a lot more quickly, and chances are that the gifted kid will have figured out part of the second lesson on xyr own during the first lesson. This means that part of the second question will be recapping stuff the kid already knows, and could be done very quickly. The rest would still be quicker than for the typical kid, for the reasons described above.
Incidentally, the first type is more common among high-average and mildly gifted kids, while the second type is more common among highly gifted kids. In addition, some kids have above-average memorization and comprehension, and both of those skills feed into each other (you remember better if you understand the material, and you understand it better if you remember related material). Lastly, not all gifted kids can be described this way. In particular, some gifted kids seem to be just more motivated to learn, and this alone could possibly explain their giftedness (or high motivation could combine with improved memory and/or comprehension).
Anyway, the point is that if you understand how a child is gifted, you can teach them better. A kid with an excellent memory but poor comprehension needs a whole lot less review but only slightly less explanation, while a kid with excellent comprehension and a poor memory needs only slightly less review but a lot less explanation. In addition, you can use memory to build on comprehension and vice versa, by explaining how the material you're teaching relates to things the kid already knows. This will help the memorizer understand, because they remember their understanding of the previous material, and it'll help the comprehender remember, because they can fit this information into a web of linked concepts.

Self-Advocacy

2009-11-20T07:14:00.000-08:00

This post is at least partially a response to a blog entry by David Hingsburger, about a developmentally disabled guy named Duncan who was physically attacked by some people because of prejudice, and who reported it to the police, and his attackers went to jail. It's a tragedy that he was attacked, but a success that justice was done.
And it got me on a tangent about self-advocacy, and why that can be so hard for many developmentally disabled people. Why aren't more people who go through things like what Duncan went through doing what Duncan did? Why do so many people just deal with it and not fight back? (This post, I just realized, was also inspired by hearing in my women and gender studies class about Nu Shu, a female-only language and writing system in China. The Nu Shu women put up with so much, and their only rebellion was in secret communications to each other. Why?)
Of course, firstly, disability can have a direct impact. I know a boy whose only communicative speech is 'yes' or 'no'. So unless someone asked him, twenty-questions style, if he was the victim of something like this, he wouldn't be able to report it. And even if you did, would he have the receptive language necessary to understand your questions?
Then there's how reports by disabled people can be discounted and ignored, especially if their communication is atypical. That's one part that I found frustratingly accurate and well-demonstrated in the movie I Am Sam, where the people always seemed to assume that Sam's talk about the Beatles was nonsense even though he was clearly communicating through analogy. Even when someone gets the message across, it's often ignored if they didn't communicate it the right way.
But I think there's something more. It seems to me that many developmentally disabled people learn not to speak out for themselves. For example, my mother is a champion complainer. If she thinks that some business has treated her wrongly, she'll write a letter of complaint, or phone them up, and it's impressive to hear her rant. And she can often get an apology that way. But when I try to complain, and they start to explain how 'that's just the way they run things' or whatever, I get confused. I think: 'Maybe that's actually how it works, and everyone else just knows this and I don't. Maybe I'm misunderstanding the situation because I'm autistic.' And I'll often give in. It's only with disability issues that I don't tend to give in, because I know the system needs to be accessible to autistic people, and even if I don't get what I want in time to help me, it'll be a help to the next autistic who comes through.
And I think it would be even worse if I'd been diagnosed earlier, and had more typical 'autism parents'. I see the kids in the volunteering programs I work in, and how casually the workers override their interests, and they often don't complain, and when they do, it makes no difference. I see ABA programs training autistic kids, and while the kids may be learning to identify colors and put their clothes on and all that, what they're learning above all is to automatically obey what a nondisabled adult tells them to do. Imagine if a pedophile got at one of these ABA kids, they're already groomed to be easily abuseable! (And no doubt many pedophiles have gotten at these kids, given how high the rate of abuse of disabled people is said to be.)
Someone asked me recently if I write stuff on my blog to help parents of kids like me, so I'll go now into how parents can help their kids self-advocate. Well, firstly, advocate for your child, like my parents did. Don't accept something inferior, when you know your child needs X and the system has a duty to provide it. Even if you don't get it, your child will see you fighting on their behalf, and learn that their rights are worth fighting for.
Next, listen to your child. Even severely disabled kids can tell you exactly what they want and need. As much as possible, respect your child's wishes, and if doing so isn't practical or would infringe on other people's rights, explain this to them while acknowledging that they want it, and see if you can find a compromise. Some kids are actually very assertive already, and if your child's like this, don't see it as a problem! Sure, they're harder to look after, they can be really annoying, but remember that this trait can be a great strength. I've often gotten complaints on AllExperts.com from parents of kids who get into logical debates whenever you tell them to do something, and I always give them the same advice: explain to the child exactly why following that rule is important. If you can't explain that to them, then toss it out as unneccessary. That way, you're encouraging the child to think 'If I don't think something's right, I don't have to do it', which is exactly what people like Rosa Parks did.
Thirdly, learn about discrimination, and teach your child about it. Disability discrimination is the most applicable, but if you're more experienced with some other discrimination, teaching your child about that will make them better able to recognize disability discrimination as well. My parents knew absolutely nothing about disability discrimination, but my mother's an active feminist and anti-racist, and my father supports her in her activism. Of course, being the daughter of a feminist, I learnt a lot about discrimination early on. My Dad told me that when I was told that children weren't allowed at my mother's convocation ceremony, I said: "That's discrimination!" We didn't fight it, but my father affirmed my statement. Make sure that your child knows when they've been treated unfairly, even when it's not practical to fight back. For example, if you know your child will be bullied for doing a particular behavior, rather than just telling them not to do it, tell them that kids are likely to bully them, and it's not right to bully someone for that, but they have the choice of either toughing it out or stopping that behavior. And listen when your kid communicates that a particular injustice is a big enough deal to fight back, too. They need to learn to pick their battles, and that means picking which ones are worth fighting as well as which ones aren't.
Lastly, make sure that showing your love for your child is a high priority, higher than your embarrassment when they do something weird in public, or your fear that they won't be able to hold down a job in adulthood, or your frustration when they have yet another meltdown. All those problems are manageable, and won't stop your child from being happy. But even if you love your child deeply, if they don't know that you do, that can ruin their entire life. My parents were both abused as children, and even in their late 40s, I can see the suffering from that. It's a whole lot harder to heal those wounds once they've been made than to prevent them in the first place.
And remember: a self-advocate isn't someone who has managed to avoid suffering, but someone who has survived and fought back. If something terrible does happen to your child, help them to find their strength to fight for themselves. When my parents learnt that my cousins had sexually abused me, they took what actions they needed to protect me and teach me that I did not have to put up with that sort of thing! Which means that a) if something like that ever happens again, I will protect myself and I will seek justice, and b) I can defend others and try to prevent them from suffering like I have.

Disabled Student Services

2009-11-18T12:43:00.000-08:00

OK, so I've found out that the midterm in my women and gender studies class requires that I write three essays during the course of the exam, and I know that it'll be really painful to write that much by hand in a short time, especially when I'm anxious. Well, since difficulty with writing can be a feature of autistic people, and I'm registered at the university as an autistic student, shouldn't I be able to use a computer to write my exam?
Not so fast! They can't just take my word for it! They need a doctor's note, which means I need to bug my Dad about making an appointment with the doctor, so that I can go and tell her what I need and she can write it down. Why is this necessary, again? My doctor doesn't actually know what accommodations I need, she's literally just writing down whatever I tell her, so why can't I just tell them directly?
But anyway, we get the doctor's appointment, a couple of weeks after I first figured out that I needed it. Then I miss it. We reschedule, and finally I've got a doctor's note saying I need to use a computer for essay exams.
I forget the note in the car for about a week. Then my friend with CP who's in the same class says something about the deadline for accommodations for the midterm coming up soon, so the very next day, just before closing time, I give my note to someone in Disability Student Services, who tells me that as soon as they process my note, that accommodation will be added to the list of accommodations I can register for on the website. Which I have to do for every single exam, for some reason, which requires that I actually know when an exam's coming up, so most exams I go without any accommodations. It's only for the major ones that I get accommodations.
A couple of weeks pass, and the website still says I get only room alone and double time, no mention of a computer. So I decided, today, to go bug DSS about this because my exam is coming up pretty soon.
Well, here's what happened:
I wandered in and saw a sign right in the doorway saying [incomprehensible]. I'm about to walk right past it when it occurs to me that it might be important, so I take a second look. It says something about going somewhere else, but I have no idea where. I do have some keywords, though: 'atrium' and 'triage desk'. So I go to the front desk and ask where the atrium is, and they point me upstairs. Then, upstairs, I ask someone at some other desk where the triage desk is, and they point me back downstairs - apparently what I've been calling the front desk is actually the triage desk. So I head back down there.
At the desk, the guy doesn't seem to have a clue what I'm asking for. Probably largely because I don't really have a clue why the sign in DSS said to go there. Finally, he gets someone to come over and lead me past the sign to the actual DSS desk, which I go along with because I have no idea where they're leading me.
I talk to the person at the DSS desk, who informs me that anyone who could help me is in a meeting until 3:30, but also says something about going to the DSS exam office. So I wander off to ask random people (including the guy behind the 'triage desk') where the DSS exam office is, and end up in a hallway looking at a door that says something about exams being in progress. I walk past that door, thinking the sign means I shouldn't go in, but take a second look when I realize the door number of that door matches what I was told about where the DSS exam office was. The sign actually says I should enter quietly because exams are in progress. So I enter quietly.
There's a person behind the desk, good sign because the person at DSS said there might not be anyone there. But it turns out that person can't actually do anything related to exam accommodations, just tell me once again that anyone who could help me is in a meeting until 3:30. By this time I'm overloaded, so I complain pointlessly about how inaccessible DSS is for me, and then leave.
As soon as 3:30 comes around, I'll go back. Hopefully, I'll be able to fumble into actually getting what I need. But it really makes me wonder, why services intended for people like me are so hard for people like me to actually access. And what's really frustrating is that I don't understand the system well enough to figure out what's so darn inaccessible about it for me, and every time I say so, I get a big long string of incomprehensible bureaucrat-speech that doesn't help me at all but is supposed to explain this to me. About the only accommodation I could think of is to have some sort of advocate or something go and manage the system for me, but the closest thing I have to that (one of the people who's in a meeting right now) is just as incomprehensible to me as the rest of them.

Autistic Signals

2009-09-22T15:45:00.000-07:00

It's well-known, in the medical literature, that autistic people have different mannerisms from neurotypical people (and other neuroatypical people, often). Diagnosticians can often tell a person is autistic from the way they move, particularly things like rocking, handflapping, etc. In fact, many diagnostic screening tools ask about differences in mannerisms and nonverbal cues to identify which kids might be autistic.
But it's not just the doctors who can tell if someone's autistic. Autistic people, and people who know autistic people (such as family members) can often spot autism - not necessarily with enough accuracy for an official diagnosis, but this still shapes their interactions with these people in various ways.
A similar thing happens among gay people. Gay people, and to a lesser extent straight allies, often have a finely attuned 'gaydar' - a sense of whether or not someone else is gay. This depends partly on unintentional cues, similar to the cues diagnosticians try to observe, but also partly on intentional signals that gay people use to find each other.
Autistic people aren't as common as gay people, and have a much less developed community, but we also use cues to tell each other from neurotypicals. Jim Sinclair, in his article Alien Contact, describes the use of both sorts of signals:

"The women [mother & daughter] were talking quietly to each other. I couldn't make out the younger one's words. But I could hear their rhythms and their tones, and I knew them, and I knew her for one of my people."
[he also describes specific behaviors, such as repetitive speech, that signal this to him]

"And so, standing there in the aisle, knowing they were looking at me, I let my body begin to rock, let my hands begin to flap. Not too much. Only a little. I'm sure the mother never noticed."

Personally, in my volunteer work, I can often guess what disability the child I'm assigned to has been diagnosed with (or should be). Certainly, I can spot the autistic kids. When I work with an autistic kid, especially, I let myself act more autistic, hoping that they'll pick up on that and recognize me as one of their kind. And I get the sense that many of them do, particularly the more severely autistic kids (who, ironically, seem to be more in tune with nonverbal cues), because they often relate to me differently. It's subtle - somewhat greater interest in me, more initiation of interaction, more response to my own interaction. Sometimes I can't even see it until I watch them with someone else. Sometimes I don't see it at all, but someone else does. But the thing is that different mannerisms and nonverbal communication aren't just something that diagnosticians use to find us. We also use them to find each other.

My Parents

2009-08-28T13:25:00.000-07:00

A lot of people accuse autistic rights activists of being against parents. Often it's assumed that we had bad parenting and are projecting our experiences onto others, or something like that. Well, I can't speak for other autistics, but I know that's not the case with me. I had good parents. In fact, I had excellent parents.
Throughout my school years, my teachers kept saying there was something wrong with me. My first school kept saying I had ADHD and needed Ritalin. In a later school, the principal figured I had Asperger Syndrome. So why wasn't I diagnosed until I was 15 and sought out a diagnosis myself? Because my parents didn't think there was anything wrong with me.
Not that they didn't know I was different. They weren't in denial, they knew I wasn't like most kids. But as far as they were concerned, that was a good thing, or maybe indifferent. How could anyone think that it was a problem for a child to be as smart, creative and original as I was?
A big part of it was that they instinctively knew how to create an environment that suited me. So when the teachers said 'she's defiant, she's this, she's that' my parents honestly answered 'she's not like that at home, what are you doing wrong?' And they were right - I acted the way I did at school because my teachers didn't know how to handle me properly. What really shocked me, when I got involved in autistic rights, was realizing that it wasn't my teachers' methods that were unusual, but my parents. You see, the mistakes my teachers made that set off my meltdowns and made it nearly impossible for them to calm me down - most parents of autistic kids make the same mistakes.
I suffered a lot in school, but when I went home, I went home to an environment that suited my needs. If my teachers had been the ones raising me, it would have been so much worse. I'm not sure if I'd even be alive now, considering that despite my parents' support, I was thinking about suicide when I was 10 years old.
But I didn't kill myself. I never even considered it as a serious solution to my problems. That's because I always knew things would get better someday. And do you know why? Because of my parents.
Firstly, my parents always told me that college was way better than school, and that my kind of mind would be an asset in college. So I could put a time limit on how long I'd have to suffer, because I truly believed that once I graduated grade 12, I could be happy. (Fortunately, I got to be happy before then, because of homeschooling.) But that wasn't the most important reason I had hope.
More importantly, I knew that not everyone viewed my differences the way the school did. The people whose opinions mattered the most to me respected me, and that gave me hope that others would as well. And I never thought the problem was with me, because I was fine at home with my parents. I figured the problem was with my school. And you can leave school behind, but you bring yourself wherever you go.
So the reason I'm in activism isn't because I had bad parents and think that all parents of autistics are like that. No, I'm in activism because I had wonderful parents, and I know how unusual they were. Most parents of autistics want to be great parents to their children, but they're nowhere near as close to ideal as my parents. And I'd like to show them how to give their children what I got growing up, because I know just how essential that kind of parenting is to an autistic kid.

Rule of Perception

2009-08-21T13:36:00.001-07:00

In a lot of contexts, what's actually going on is considered to be more important than any particular individual's perception. However, in terms of the psychological impact on the individual, perception matters much more than reality.
So, for example, let's say we have two children. Child A's parents don't love him/her, and show this clearly. Child B's parents love him/her very much, but don't show this clearly. Both children are going to feel unloved and show the same set of psychological problems (all other things being equal) because they both perceive their families the same way. So, the fact that Child B's parents love him/her doesn't really matter that much to to the outcome*, what matters is how well they show their love.
For another example - imagine if a person is paranoid. He/she will be under the same sort of stress as someone who is really being plotted against, even though it's all in his/her head.
So if you want to understand why someone is acting a certain way, and what's going on in that person's head, knowing what situation they're in won't necessarily help. You need to know what situation they think they're in.

* It does matter in one way - parents who love their child but aren't showing it very well are more likely to improve over time. If a psychologist tells both sets of parents that their children feel unloved, Child B's parents are much more likely to see this as a problem, and it's a whole lot easier to choose to start showing your feelings better than it is to choose to start feeling something new.

Paranoid Parents

2009-08-09T19:42:00.000-07:00

A lot of people lately have been saying that our society has been diagnosing too many minor developmental quirks as disabilities, that we're overpathologizing children. For the most part, I've been disagreeing vocally - after all, I'm a person who would not have been diagnosed as autistic in the past, but who has been helped by being diagnosed autistic. In large part because I've found my people, and the reason I feel so different from most people. And then there's the meltdowns, the sensory overload and the organizational issues, which have been helped by trying to accomodate my autism.
But in working as a volunteer expert on AllExperts.com, I've seen another side of it. This question is a good example - a mother of a sociable 2 year old who uses a few single words, and she thinks he might be autistic. Autistic! He's not even language delayed, and his language is the only area she's really concerned about. I've gotten several questions like that - parents worried that their 15 month olds aren't talking yet or their 2 year old don't talk very much, and they immediately jump to worrying about autism. I even had someone ask me if her 2 month old was autistic!
I started out thinking that if parents think their children are different, they probably are. Now, I understand exactly why so many doctors dismiss parents' concerns - because they really are overreacting! What is going on here? Clearly, something is wrong about parents scrutinizing tiny children so intensely for signs of something wrong!
This doesn't happen with gifted children, by the way. I get plenty of parents asking me if their children are gifted, because I'm an expert in giftedness as well as autism. Most of these parents are more towards the extreme of being uncertain about obviously gifted kids, such as a kid who was reciting the alphabet at 18 months. It's only when they think it's something bad that they overinterpret minor variations - when it's something good, they need to be told about the most obvious examples. I bet there are far more gifted kids whose parents don't think they're gifted than the other way around. The exact opposite is true for autism.

Steps in Creating Something

2009-06-15T13:30:00.000-07:00

In my first-year psychology class today, my professor listed the following steps in doing something creative:

Orientation - defining the problem that needs to be solved
Preparation - gathering relevant information
Incubation - setting the thing aside and doing other stuff, meanwhile figuring out things in the background
Illumination - after awhile of incubation, a solution suddenly comes to you
Verification - you check out the insight you had and make use of it (or else go back to stages 2-3, I guess)

That's a pretty good description of how I write essays or other assignments. Stages 1 & 2 occur when I read the work I need to write about, find out my assignment and then reread what I'd most like to write my essay about. If I don't have an idea right away, I let it simmer a bit and then decide what exactly I want to write about (stages 3 & 4) and then I write it (stage 5). But I also write fantasy stories on my own time, a more creative act than writing an essay, and I don't follow these stages at all in writing fantasy.

Here's my impression of what steps I do follow:

I have an idea - like, for example, 'imagine if a half-vampire was going around biting people and then pretending to hunt himself down in order to get money?' These ideas can come from reading another story, pondering some problem, having a weird dream, whatever. I don't always know where the idea came from, but often I do.
I ponder the idea a bit, and maybe combine it with other ideas, let it simmer awhile, and eventually come up with a starting scene and (hopefully) a plot.
I write the starting scene, and keep on writing along the plot, stopping when I get stuck on something.
I talk over what I'm stuck on with someone else, or just let it simmer awhile. Then I get another idea, and either keep on writing from where I was before or rewrite part of the story and continue.
Eventually, I come to a point where I can say that it's done. Usually by then I've had ideas for a sequel, whether or not I write one depends on how good my ideas are.

Anyone else want to share?