Wednesday, January 28, 2009

Personality or Coping Style?

[Warning: Don't read if you were institutionalized unless you're willing to risk being triggered.]
I'm reading The Intelligence of the Feeble-Minded (L'Intelligence des Imb├ęciles) by Alfred Binet and TH Simon, published around 1909. Alfred Binet, in case you don't know, was the one who invented IQ tests. In this book he and his coworker study a variety of subskills to see if they vary by intelligence level, as well as providing very detailed behavioral descriptions. It's quite interesting.
One thing they discuss is personality. They say that among 'feeble-minded' people there seem to be two personality types - rebellious characters and docile characters. These, they say, are unrelated to intelligence level, though the rebellious ones are often underestimated because they're harder to test.
The docile types are basically super-compliant people, who will follow all sorts of commands given, no matter how pointless. For example, they repeatedly took this one guy's cap and hid it and told him to find it, over and over, and the most resistence he showed was to lean away slightly to make it harder for them to reach his hat. Finally, he refused to get it off of a horizontal bar, but that was the first refusal after obeying the same order dozens of times. They say these people are easier to test, although they can be too agreeable. For example, when studying suggestibility, they got one guy to pretend there was an invisible dog and an invisible General, to the point where they thought he actually saw them, until the following conversation:

"Q. Very well, that little dog, and then the General, were they people like us?
A. Ah! the General, yes. (He has not understood the point of the question, he wishes to say that we are not like dogs).
Q. But is it true that you have seen him?
A. Yes. (He smiles, his eyes glisten).
Q. Well, why does that make you laugh?
A. Because you talk to me of the General. (Seems confused - laughs as he lowers his head).
Q. But why do you laugh in speaking of the General?
A. It's a joke you played on me.
Q. But have you seen him?
A. (With hesitation) No, I didn't see him.
Q. But you talked with him.
A. (Hesitating) Yes."

At this point, they recognized that the guy was not suggestible enough to have hallucinations when the doctor suggested make-believe things, he was just docile enough to play along with the doctor's game. As they said in summary:

"We believe that Albert was never duped. And now he is a little ashamed of his compliance and is in a very troubled and complicated mental state when we question him. He still wishes to agree with us, for he is too timid to resist; hence his contradictions. All the time he tries to divine our thoughts; we could still make him say anything we wished."

The rebellious type is quite different. One girl they described threw any object they gave her onto the ground (without acting angry). Some act surly and defiant, while others start crying when asked to do anything. Another woman sat smiling and giggling while answering 'I don't know' to every question, even ones she could answer when she tried. He notes that the rebellious ones typically are much more likely to cooperate with easy tests than hard ones, making them seem less capable than they are. Their performance varies depending on who does the tests, because some people are better at getting them to cooperate than others.
Although it's clear that they probably prefer running tests on the docile people, they describe the rebellious ones as showing a positive form of assertiveness on those tests where agreeing makes a person seem dumber. For example, they don't go along with the invisible dog and the invisible General.
One caveat they give, in my opinion, explains everything about these personality types:

"We shall not here treat this subject fully; certain material conditions have hindered us; it is not the imbecile in a hospital, it is the imbecile in his family or in a family colony that one must know. We have seen our subjects only in the unnatural surroundings of a hospital, or worse in the narrow limits of our office, where we had called them; seated near a table, replying to questions, talking, or submitting to different tests, they were somewhat like students at an examination. A professor would form a very narrow view of the youth of his time, if he saw them only during an examination. We resemble somewhat such a professor."

To me, those personality types sound like ways in which people can cope with being profoundly disempowered. All the people they studied, remember, lived in an institution, and even before coming to live there many of them - especially the lowest functioning ones - probably had little or no control over what happened to them. In the institution, people could do all sorts of things to them, giving no reason whatsoever, with the expectation that they would obey. For example, in one chapter, they discuss tests they ran on pain perception, in which they pricked their subjects with pins, pinched them, put their hands in hot water and put lighted matches to their noses to see how they'd react. The rebellious ones typically acted scared and tried to leave, one woman, for example, making up an excuse that it was time to go and eat. The docile ones cooperated, to a point that I think suggests dissociation: one guy was pinched unexpectedly and pulled back with a cry, but on seeing the serious expression the doctor had, he willingly let them prick him with a pin and showed no sign that it hurt.
Amanda Baggs and Laura Tisoncik, in their conversation on institutions, described what sounds suspiciously like Binet and Simon's 'docile type':

"Laura: Oh gee. I spotted it in you right away. How do I describe it? You were an obvious case of it. You had a kind of submissiveness that is not so much... it is a kind of submissiveness but it's not submission in any kind of normal way. Especially since you were oftentimes looking for where the rules were, so you could follow the rules. Without necessarily appreciating the fact that there weren't necessarily any rules for any particular event or... I don't know how to describe it. You were waiting or looking for the institution around you, as if, it's like, "Where is it, it's hiding here somewhere!" This is not necessarily a very constructive behavior out in the real world, because it is particularly passive in many ways, and because it is sort of like looking around for it. I really got a sense that you were looking around all the time for the rules. And terribly terrified that you were violating all the rules. And meanwhile not necessarily getting what actually should be done, because you were busy looking for the rules. It's a paradox there ...
Amanda: And then there were the apologies...
Laura: Oh yes. The neverending... to properly read the apologies, read them as "Don't hurt me! Don't hurt me! Don't hurt me! Please! Don't beat me up, don't tie me down, don't torture me!" Which, I obviously had no plans on doing any of the above, but again you were reacting to the situation as if you were still in the psych hospital. And that obviously wasn't the case, but again that's a typical PTSD sort of thing. And I certainly understand it very well, because that kind of an experience really makes an imprint on a person for life. You can't go through that experience of reaching that absolute bottom level of human experience without being seriously affected by it.
Amanda: As I recall it wasn't just actions I was afraid of, it was thoughts.
Laura: Oh yes, of course. I didn't go through that, but then I didn't go through brainwashing. You did. I fortunately spent most of my time in places where they kind of throw you in there, lock you up, and kind of forget about you. I think the only time I ever saw doctors at state hospitals was when I was being admitted and when I was being released. So there was nobody there playing warp-your-brain with me."

As for the rebellious type, that reminds me a lot of myself. In a setting where I feel safe, I'd have cooperated with many of his experiments (particularly the invisible dog and General, because I love to play pretend), but if he was one of my teachers at school, and particularly if he pinched me unexpectedly or otherwise tried to hurt me, I would not have cooperated. Indeed, I'd have to feel very powerless to even cooperate as much as his rebellious subjects did - for example, the woman who made up an excuse of going to eat to escape his pain tests stood by the door but was too scared to open it herself (rightfully so, as he'd probably have stopped her and if she tried to run away big burly attendants might have come to pin her to the floor).
Amanda Baggs and Laura Tisoncik also describe behavior like one of his rebellious subjects in the conversation on institutions (referenced above):

"Laura: ... I tended to look rather threatening. Not to mention the fact that the ward was very impressed with me when I arrived. The first time I was there, which was the only time I was around a lot of teens and the like, I would have gotten there anyway, but the last thing I did was pour a whole bunch of ink over the psychiatrist's notebook. I was sort of like a mini-hero when I arrived and the story got around, because the guy was a terrorist and a bully. And most people didn't have the courage to do anything to him or stand up to him or whatever. Although certainly there was a lot of discussion in the wards occasionally about killing him. So when you arrive as the hero, the courageous one, that tends to limit the likelihood that you're going to get bullied."

It's much more pleasant to think, as Binet and Simon seems to do, that the docile and rebellious behavior patterns are simply innate personality types. But I don't think that's the most accurate view. And it's upsetting to think of the suffering that their patients went through.


Tuesday, January 27, 2009

Assumed to be Normal When You're Not

I've heard many high functioning autistic complain about people assuming that a person who can speak well can't have trouble holding down a job, managing money, or keeping their home liveable - all things that even high functioning autistics can have trouble with. When they notice trouble in any of those areas, it's typically assumed to be poor social skills (eg not knowing how to apply for a job) when in fact social skills are only part of the problem there. While there are plenty of services for autistic kids - although there probably should be more - there's almost nothing for adults, especially adults who can talk reasonably well and have a higher IQ*.
Apparently this scenario is nothing new:

"One of the main reasons that the moron is so dangerous under present condition is that he is not understood; he is assumed to be normal, he is treated like a normal person and is expected to react like a normal person. There is no evidence to prove that the feeble-minded person taken in the beginning, understood and properly treated, becomes vicious, bad or dangerous. On the contrary there is much to prove that he is not vicious; he may be made so by mistreatment but he is not so naturally. A menace to society? Yes when mistreated, when not cared for, when allowed or compelled to bear the burdens of intelligent people."
(Henry Herbert Goddard, Feeble-Mindedness, 1916)

"It is now several years since that this city was excited by the trial before a Master of Lunacy of a young man whose ability to manage his affairs was doubted. ... The jury supported the doctrine of the liberty of the subject, and the poor congenital imbecile was allowed to go his own way to destruction, with the result of becoming speedily bankrupt in fortune, ruined in health, and a scandal to an honored ancestral name."
(John Langdon Down, Mental Affections of Childhood and Youth, 1887)

Of course, there are differences between that idea around the turn of the century, and the current discussion of high-functioning autistics. Firstly, they were discussing people who would presumably (and in Goddard's studies actually did, although he had a higher cutoff for normal IQ) have a below-average IQ, rather than normal-IQ cognitively disabled people. More importantly, these were doctors, not self-advocates, and the help they were proposing was disempowering to those being helped. But the idea that someone who's treated like they're cognitively normal when they aren't can get into trouble as a result - that's nothing new.

* Not that lower-functioning autistics don't have trouble getting services - especially if they break stereotypes in some way. I've heard of autistic facillitated communication users being cut off from services because their IQ scores are too high - even though they're still unable to do many self-care activities or keep themselves safe.

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Monday, January 26, 2009

Dan and the Monster Autism

Action for Children has started an ad campaign portraying an autistic kid as being trapped inside a monster, then fighting his way free with their help. I just emailed the following reply:

"I am an autistic 19 year old. I am not a monster, nor am I trapped inside a monster. I'm just a unique person who has been misunderstood and abused by many others.

It's not my fault, or the fault of my autism, that other kids called me names, shoved me, etc. Nor was I bad when I did the only thing I could see to do, and lashed out at the bullies or ran away from school. That was better than when I shut down and lashed out at myself.

It's not my fault, or the fault of my autism, when my teachers insisted that I rearrange my mind to fit their curriculum. When I refused to obey them, hid under tables, or just stood there defiantly until they called my parents, I was advocating for myself. When I thought of myself as stupid, lost interest in things I used to like, and promised myself I wouldn't be 'bad' anymore, that's when I did something wrong, because I was hurting myself.

If no one else will defend your rights, you must defend them yourself. But some kids, like Dan, give in and accept the poisonous blame. They attack themselves, trying to defeat the monster inside. They learn that they're broken, and they must spend 'as long as it takes' to make themselves into worthwhile, valuable human beings. My parents told me that I was always a valuable human being, but many kids don't have parents who do that.

If you claim to be committed to helping children break through injustice, then do that. Don't tell kids they have to defeat the monster that is inside them, tell them they're OK and they must respect themselves. Don't tell them the way they were born, the way they are, is inherently broken, or else you're the injustice they need to break through."

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Friday, January 23, 2009

Positive Stereotypes 2

In reply to my recent post about seemingly positive stereotypes that are disliked by the people they're applied to, one person brought up the problems with the 'Asians are good at math' stereotype.
This brings me to another type of positive stereotype - one that does readily allow you to take the perspective of the person being described, or ask their perspective. And this is the type of stereotype I see some people actually liking and accepting for themselves. In the autistic community, an example would be the stereotype that autistics are good with computers, or have excellent spatial skills. I've seen several autistics link their 'autistic pride' with these stereotypes, so clearly these are stereotypes that can be used for positive self-identification.
But these stereotypes, too, have problems with them, and some people dislike these positive stereotypes. It's my impression that the people who tend to dislike such stereotypes are the people the stereotypes don't fit. The Asians who are average or poor at math and the autistics who are average or poor at computer skills or spatial skills are the ones who tend to complain about these stereotypes (and others on their behalf).
I think there are two parts to this. Firstly, inaccurate stereotypes, whether positive or negative, can lead to misunderstanding. For example, an Asian getting C grades in math might be criticized for not working up to full potential, when in fact xe is doing the best xe can. Or an autistic might be encouraged to look for a career with computers, when xe has be constantly retaught how to start one up. If people don't realize that this individual doesn't fit that stereotype and never will, then there will be much frustration and angst when they try to make that person be what they aren't.
But there's a deeper issue than that. Many times, these positive stereotypes are an attempt to assert the worth of a devalued group. Certainly, that's the case with autism - I've even seen people use the stereotyped autistic talents to argue that we shouldn't all be aborted when or if they develop a prenatal test for autism. (Personally, I suspect that developing a prenatal test for autism will turn out like it has for MR - we'll find out autism is a multitude of different condition, some of which can be tested for and some cannot.) In a context where these stereotypes are used to prove our value and justify our very existence, there is an implication that a person who doesn't fit those stereotypes is not valueable, and should not exist. This implication, naturally, is very concerning to those who don't fit the positive stereotypes, and to people who care about them. As an autistic with low-average spatial skills (Raven's Progressive Matrices score 80), this is something I have personal experience with.
I've written about this before. I always think of Rudolf the red-nosed reindeer in this context. It seems that rather than just saying 'difference is not a bad thing, and everyone is valueable', some people try to prove the worth of various differences by finding some special talent associated with that difference. But that does nothing to assert the worth of people who lack the talent you've named, nor does it challenge the underlying idea that difference is a bad thing.

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Tuesday, January 20, 2009

Seemingly Positive Stereotypes

Some people may be surprised at how rights activists sometimes object to stereotypes that seem positive, such as the 'noble savage' or 'innocent retard' stereotypes*.'Why would they be upset about being portrayed positively?' people ask. In reply, many activists fumble with comments about not wanting to be seen as different or wanting to be viewed as people, which often don't clarify much.
I think I've figured out one of the real problems with those stereotypes. It's a matter of the perspectives they suggest. When you think of a 'noble savage' or an 'innocent retard', you typically don't think of that hypothetical person from xyr own perspective. You think of these people from the perspective of an observer. And how would you go about understanding their perspectives? You can't ask them - the 'innocent retard' would probably not understand the question, while the 'noble savage' would reply in some riddle you can't understand. At least, that's the perception, and comments from people viewed in the lenses of those two stereotypes will be interpreted in those ways.
Native people and disabled people are not like nondisabled whites. We all have things in common, sure, but there are also differences, and often the stereotypes catch an element of those differences. But they hide the most important perspective on that group - their own. If your stereotype is of someone you can't imagine being, yet can predict the actions of, then it's probably not a stereotype that the people described will be happy with.

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Wednesday, January 14, 2009

Side Effects of Behavioral Treatments

[Note: in this article, 'behavioral treatments' does not refer solely to the field that BF Skinner and Ivar Lovaas were involved in, but to any treatment in which the 'active ingredient' is some kind of experience rather than a biological agent. For example, psychoanalysis, floortime, music therapy, remedial education and sensory integration therapy are all examples of behavioral treatments.]
A lot of people understand that biological treatments, such as medications, can have unwanted effects. Some people understand that these unwanted effects can be permanent. Therefore, most people don't want to try some biological treatment unless they feel pretty sure it's the best option. (Granted, some people aren't so cautious, but many are.) Most people understand that making the wrong choice regarding a biological treatment can have serious impacts.
But a lot of people don't understand that behavioral treatments, too, can have side effects. They think 'well, it can't hurt, may as well try it'.
This view is encouraged by the people who offer behavioral treatments, because unlike medications, most behavioral treatments have no studies into the potential side effects. Indeed, many behavioral treatments have few or no studies of any effect of the treatment, much less side effects. However, even treatments such as ABA, which have a lot of research into their effectiveness, seldom study side effects. When I searched on PubMed for '"applied behavioral analysis" side effects', the only study I found was "Behavioral epidemiology of food additives" (PubMed ID 299572), which seems irrelevant. (PubMed has a tendency, when it can't find what you searched for, to select something that might have some of your search terms but isn't actually what you're looking for. It's just a quirk of their search engine.)
A big part of the problem is that the people studying a behavioral treatment are often quite blinded by their particular theory. With biological treatments, researchers tend to pick what treatments to try and how to measure effectiveness based on their theory, but side effects seem to be a mismash of theorized potential side effects based on several theories as well as things that are just common side effects of medications and whatever other side effects someone happens to notice. With behavioral treatments, however, many researchers seem to stick so much with their theory that they can't see the side effects, because those side effects don't fit their theory (in theory, the treatment is typically just fine).
In ABA, for example, the few times they happened to mention side effects, these are solely behaviors. Very often they're talking about something they actually wanted (ie generalization) rather than an adverse effect. The few times they discuss adverse effects, these are increases in unwanted behavior, often fairly minor things (eg a child punished for climbing on furniture starts sitting on the back of her chair instead of on the seat) which are felt to be an attempt to find other ways of getting the reward they used to get from the target behavior. The treatment is typically to change contingencies so these side effects are eliminated the way the target behavior was.
In other words, only the side effects that fit their theory are seen, and typically they're interpreted in a way that assumes the treatment is good. This is true in so many contexts. Bruno Bettelheim described children regressing in bowel/bladder control in his school, which he viewed as a sign of progress - a form of self-expression in a child who previously couldn't show those feelings at all. Another common method is to describe the side effects as being a sign of an improperly done treatment, which can get pretty ridiculous when you start claiming (as Ron Leaf did at the conference I attended) that 90% of people using your favorite treatment are doing it wrong, on no evidence other than that the treatment had adverse effects. While people involved in biological treatments often say that using them improperly is a common cause of adverse effects, only the quacks think their treatments can't have adverse effects when used properly. (The problem is that almost all the people involved in behavioral treatments basically think like quacks, even many of those using well-documented treatments.)
Given that it's so hard to find accurate information about adverse effects of behavioral treatments, many people assume these do not exist. But they do. Here are some ways to estimate the risks:
  • Look for stuff written by people who oppose that treatment. Studies are best, because then you'll have documentation. But if they don't have studies to back them up, you'll have to go to the studies by the proponents, and 'read between the lines' to see if there's evidence that supports what the opponents say. Focus on the data, not the interpretations of it, to find this evidence. For example, if you find stuff by opponents of ABA saying that extinction of a useful behavior can cause learned helplessness, and then find a study in which a child showed reduction of many different behaviors when one behavior was being extinguished, you've found some evidence in favour of the opponents' theory (not proof, but evidence suggesting that theory).
  • Imagine how you'd feel in that situation. If you think you'd have trouble with that, why? If you think you'd be fine, what could change to make you have trouble with it? Imagine it in the context of each theory you find. For example, to assess the risk of adverse effects of faciliatated communication on an autistic person, you'd have to try to imagine yourself both as a person who is truly communicating through FC and as a person who is having words 'put in their mouth' by FC. When assessing the risks for others involved, use the same kind of method - eg how would you feel if you thought your child was communicating with you but it was just the faciliatator, as opposed to how you'd feel if your child really was communicating. Remember, when assessing these, that the different theories aren't necessarily equally probable. Use what evidence you can find to assess the probabilities.
  • Lastly, keep watch on the impact it has when you try it. A good marker of the risk of a treatment is how happy or sad the person is when being treated. If they're happy, usually (not always, but usually) the worst that can happen is that the treatment doesn't help. If they're unhappy, that's when the risk of harm is higher.

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