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.

Self-Diagnosis

Recently, I was reading Michael John Carley's book Asperger's from the Inside Out. At one point in that book, he starts talking about self-diagnosis. I don't have the book with me right now, so I'll just summarize what he says:
Firstly, he estimates 99.9% of self-diagnosed aspies really are on the spectrum (the .1% who aren't, he claims, are typically claiming to be AS because the condition they really have carries greater stigma). He says at first he felt it was just fine to be self-diagnosed, and gives an example of a self-diagnosed aspie he knows who is doing quite well. But then he noticed in his support groups that despite his 99.9% comment, repeated frequently, self-diagnosed aspies seemed much more likely to think that he doubted they were autistic. And this made him think that most aspies probably need a psychologist's confirmation in order to feel secure in their aspie identity.
This made me think. I've actually had two separate experiences of self-diagnosis on the autism spectrum. With the first one, the self-identification as autistic, my experiences are a lot like he says - I called myself 'probably autistic' until I was officially diagnosed. And deep down inside, I kept wondering if maybe I was actually stupid and rude, as I'd believed before self-identifying as autistic. It was my diagnosis of PDD NOS that stopped that.
For my second self-diagnosis, of pathological demand avoidance, an official diagnosis is just not possible. The only center that diagnoses PDA is in England and only sees children under 16 years old. When I emailed the author of the original description of PDA, she wouldn't even give me her opinion about whether I had PDA, based on my description of myself. So no official diagnosis. But now I don't really doubt that I'm PDA. And what happened to do that, is that my mother read the description of PDA and told me it sounded just like me. So, in essence, my mother diagnosed me.
I've heard autistics refer to themselves as 'self-diagnosed and peer-confirmed', meaning that they self-diagnosed, then met other autistics who agreed with their self-diagnosis. My self-diagnosis of PDA is a bit different, because my mother's not autistic, but it's the same general idea - a non-professional confirming a self-diagnosis. It seems to me that maybe what's needed, for many people at least, is just someone else agreeing with their self-diagnosis. That other person needs to be seen as knowing enough to make that judgment, and as someone who'd be willing to say straight out if they didn't think you really fell into that category, but they need not have a degree.
I also wonder if this uncertainty about self-diagnosis is itself an effect of how much the category of autism is 'owned' by professionals. Virtually all gay people are basically self-diagnosed, and it's rare to see such uncertainty among gays (granted, homosexuality is also much more easily defined, so that could be it instead).
Any thoughts?

email to schizophrenia digest

I recently e-mailed the following to the schizophrenia digest 'Ask the Doctor' column:

To Dr Bob,
Awhile back I read the book I’m Not Sick, I Don’t Need Help! My question is how to distinguish lack of insight into their own condition from simply disagreeing with their psychiatrist. For example, as an autistic person, I have often heard accounts of adult autistic people being misdiagnosed as schizophrenic and given inappropriate treatment as a result. Many of these people are aware that the diagnosis doesn’t fit and the treatment isn’t helping. Even when accurately diagnosed, some psychiatric patients may not be helped by the usual treatment, may feel that the drawbacks of the treatment outweigh the benefit, or may have different goals for treatment than the psychiatrist. How do you decide who is right when the patient and the psychiatrist disagree?

I'd really like to know his answer, but even more so I want to raise the question.

PS: I just added links to my favorite blogs. Note that there's actually a curebie autistic among them - I don't agree with many of her statements, but she's very interesting to read and discuss with.

New Breakthrough in Counseling

I had a counseling session yesterday. I told my counselor that I'd had a meltdown and a bit about it, but I really didn't want to talk about it, so I started spacing out and said 'my vision's going strange'. She asked me what I meant and I explained that it was all fuzzing over except what I was looking at, which became very clear (it was a basket underneath a chair). I told her that tended to happen when I was upset. Then I said that I felt like I was being pressured to talk about my meltdown even though I didn't want to. This is the first time I've been able to say no to this sort of thing, to say that I don't feel comfortable discussing my bad behavior with a relative stranger. Before, I always just pushed that discomfort down because 'you're supposed to tell your counselor things like this' and also because I'd learnt that not talking about bad things was dangerous.
Then we discussed how I felt counseling wasn't really helping me very much, and how I felt it was too verbal. She suggested writing nice things about myself on rocks so I could handle them when I was upset. I said I wasn't sure that would help, then got the idea to get my younger brother (who was in the waiting room because he'd decided to accompany me) to write stuff on the rocks. He happily did that (partly because he was bored in the waiting room). So then I had a collection of rocks with things like 'nice' and 'good freind' (that's how he spelt it) and 'observant' written on them.
Later that evening, at home, I got into an argument with my brother and had a slight meltdown because I felt like he didn't care about me. My mother coaxed him off to have a bath and meanwhile my father gave me a container for my rocks because the bag I'd been given for them had broken. I started rubbing each one to warm it and then putting it in the container.
The first few I put in, but I found a couple I disagreed with and set them aside, thinking I might do something with them later. A few rocks later, I decided to put the ones I thought weren't wrong in the container, and with the others, work on convincing myself until I felt I could put them in the container.
Mostly, they were all things like 'nice', 'kind', etc, except for 'truthful'. Anyway, I asked my father to tell me ways I fit those when I couldn't think of any myself. By the time I'd gotten them all in, I felt much calmer. (Then I stood up and one I'd overlooked, 'careful', fell off my lap. That was funny.)
Anyway, the big breakthrough was that I found a way of dealing with my feeling of not being cared about in a way that fits my mind, though it may not be standard therapy. I also broke another rule I had that wasn't good for me.

Whose Side Are They On?

According to many parents of autistic kids, at least those who know the history of autism, psychoanalysts were 'the bad guys'. Many also hail early behaviorists as heroes. Certainly, they were much kinder to parents. Bruno Bettelheim, in his book The Empty Fortress, said that the difference between Nazi prison guards and mothers of autistic kids was that the mothers got at the children from a younger age (Bruno Bettelheim was a concentration camp survivor, and appears to have drawn extensively from that in his work). In contrast, in an interview I found with O. Ivar Lovaas, he said: 

"I can tell you that the parents that we work with are very nice people. We get to know the parents as people, and when you do that you find that there is no reason to believe that they produce autism. But a lot of parents still think that it must be their fault somehow. They have heard that the parents of autistic children do not express love adequately, so they bend over backwards to be loving. What they get for their trouble is even more bizarre behavior � the child smears his feces on the walls, bites his parents, and has violent tantrums. The parents are afraid to punish them for these acts because they have been told that the child behaves this way because he feels unloved, so if you punish him you are only making him worse. But this is all nonsense. And this theory has made a lot of parents feel terribly guilty and made the autistic child get worse instead of better." 

It's obvious which attitude parents would prefer. But if I was an autistic child in the 1970s, I'd much rather receive psychoanalysis than ABA, even though it would be worse on my parents (though admittedly not all psychoanalysts were quite as bad as Bruno Bettelheim). Here's why: 

"You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense - they have hair, a nose and a mouth - but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person." 

(Ivar Lovaas, in the above-mentioned interview)

In contrast, psychoanalysts typically viewed the autistic child as a person and assumed their behavior was meaningful and important in some way. Behaviorists consider behavior meaningful, but in a very limited and simplistic sense of receiving a reward of some kind, and they don't question whether abnormal behavior should be reduced. Psychoanalysts ideally hoped their patients would become normal, but they were careful not to remove important methods of self-expression unless the person had better ways of expressing themselves (and even then, they were careful about it). In general, the treatment was much kinder. Psychoanalysts worked on building connection and understanding the patient. With higher functioning, adult patients, this was generally sitting or lying comfortably while saying whatever came to mind - 'free association' - but with children, especially if they had limited verbal skills, it was basically play therapy. The book Dibs: In Search of Self is a good illustration of this with a boy who probably was autistic (they call him emotionally disturbed). Here's Lovaas describing how he treated autistic kids: 

"Spank them, and spank them good. They bite you and you just turn them over your knee and give them one good whack on the rear and that pretty well does it. This is what we do best; we are very good at controlling these kinds of behaviors. This is also the way we handle self-destructive behavior." 

"One day I was talking with her teacher and Beth began hitting her head against the edge of a steel cabinet. She would only hit steel cabinets and she would only hit them on the edge because, you see, she wanted to draw blood. Well, I think because I knew her so well, I just reacted automatically, the way I would have with one of my own children. I just reached over and cracked her one right on the rear. She was a big fat girl so I had an easy target. And I remember her reaction: She turned around and looked at me as if to say, "What the hell is going on? Is this a psychiatric clinic or isn't it?" And she stopped hitting herself for about 30 seconds and then, you see, she sized up the situation, laid out her strategy and then she hit herself once more. But in those 30 seconds while she was laying out her strategy, Professor Lovaas was laying out his. At first I thought, "God, what have I done," but then I noticed that she had stopped hitting herself. I felt guilty, but I felt great. Then she hit herself again and I really laid it on her. You see, by then I knew that she could inhibit it, and that she would inhibit it if she knew I would hit her. So I let her know that there was no question in my mind that I was going to kill her if she hit herself once more, and that was pretty much it. She hit herself a few times after that, but we had the problem licked." 

"We stay close to them and when they hurt themselves we scream "no" as loud as we can and we look furious and at the same time we shock them. What typically happens is this - we shock the child once and he stops for about 30 seconds and then he tries it again. It is as though he says, "I have to replicate this to be sure." Like a scientist. He tries it once more and we punish again and that is pretty much it. So we can cure self-destructive behavior - even long-standing, self-destructive behavior - in a matter of minutes." 

"How do you avoid having the child become afraid of you? Lovaas: That is a good question. No one punishes who isn't prepared to devote a major part of his life to that child. Nobody punishes a child who doesn't also love that child. As soon as you suppress self-mutilation you start building appropriate behaviors. You reward the child for doing other things instead of hurting himself." (It actually won't work - I lived with someone who was sometimes nice and sometimes mean and I was plenty scared of him.) 

Which would you prefer - someone playing with you and getting you to express how you feel, or someone hitting you, yelling 'No!' right in your face and zapping you with an electric shock device? Which would you prefer - being viewed as a person who is hurt and coping the only way they can, or as a physical person who is not a person 'in the psychological sense'? Psychoanalysis certainly had its problems, but it was by far better for autistic children than ABA.

Radical Feminist Therapy

I've read a lot about various therapies. My biggest problem with many of them is that they take society for granted. They assume that what the majority likes is probably good, and what the majority dislikes is probably bad.
Which is why I was excited when, in a local used book place, I saw a book on Radical Feminist Therapy (by Bonnie Burstow). I thought 'they won't take society for granted'. I was right.
Although I don't agree with everything in that book - for example, the claim that the majority of women are naturally lesbian and are socialized into heterosexuality, or that autonomy should take precedence over preventing suicide - there's a lot I found very valuable.
Firstly, she discusses what she calls the 'just-like-us' scripts. She describes three types. The first, the 'liberal just-like-us' script, is described as such:

"The paradigmal liberal-scripted woman sees all ideology as dangerous and believes that she has no ideology. While acknowledging that injustice exists and occasionally fighting against it, she believes that society is essentially just and that for the most part we need only point out injustices and appeal to people's better nature and everything will be okay. Insofar as she acknowledges and protests against severe injustice, it is generally in some other part of the world and in reference to an oppressed group to which she does not belong. She believes that all positions are equally flawed, that there is equal right and wrong in just about everything anyone says, and that everyone has an equal burden to bear."

The part about how liberal-scripted view injustice is a good example of what I call 'taking society for granted'.
Regarding everyone having equal right and wrong, I think everyone is right about some things and wrong about others, but not to equal degrees. Some people see the truth better than others, often because the others are taking society for granted and won't or can't challenge basic assumptions.

"A second type of just-like-us script I call 'honorary just-like-us scripts.' The woman with this script has been assigned and has accepted attributes that are traditionally identified with the oppressor. She has been treated like an 'exception' by one or more significant others who belong to the oppressor group. And she has been rewarded for joining with them in belittling the oppressed group to which she actually belongs... The honorary guy is in an enormously precarious and frustrating position. Being even more critically divided from women than the traditional woman is, she has no women friends on whom to rely. She keeps finding herself fundamentally betrayed. 'Inexplicably' she is periodically robbed of her 'male' status and is demoted to 'women' again... As counselors we need to understand and validate this woman's pain and her anger. She has been harmed dreadfully. Her very ability to question traditional women's roles is being used to deceive her."

Though the comparison doesn't fit exactly, this reminds me a bit of the 'shiny autistics'. Many 'shiny autistics' are among the relative minority of autistics who have the most mainstream views of autism. For example, in Autism and the Myth of the Person Alone, the autistic in that book who had the worst view of autism was one of the only two who are relatively well-known by 'curebies' - Sue Rubin. Most of the autistics in that book were much more positive about their autism. All agreed that inability to communicate is a big problem, but many described wanting to be accepted as they are instead of hoping for a cure, and many mentioned positive aspects of autism.
Regarding the 'ability to question traditional women's roles', the 'shiny autistics' are often held up as breaking stereotypes because they are viewed as 'able disabled' instead of 'unable disabled' (or, as Cal Montgomery put it, as Mary instead of Bruce).
One important difference is that 'shiny autistic' is a less voluntary position. Many autistics may be forced into that role, and rather than not expressing controversial views, they are just selectively ignored or misinterpreted when they do. As I get to know more of Tito Rajarshi Mukhopadyay's (the other relatively well-known contributor to Autism and the Myth of the Person Alone) writing, I see that his view on autism is much more accepting than the way he is typically portrayed. Partly because of his unusual way of expressing himself (like many nonverbal autistic typists, his language differences are evident in his typing, and there is also a cultural barrier for Westerners because he is Indian) and partly, I suspect, for political gain, many of those who discuss him and review his books portray autism as much worse than he does while appearing to agree with him. To a lesser extent, Amanda Baggs has also experienced this, though she fights it well. If you look at how CNN portrays her, it is more mainstream than how she describes herself. (For example, Amanda Baggs never refers to herself as being trapped inside herself, which is a comment the reporter gives when she hits herself - 'such a bright woman, so trapped'.)

"The attributes that the 'liberal' members of the dominant group impose on people with keep-it-hidden scripts are fairness, discretion and the attributes of the dominant liberal group. Injunctions and other messages that are given include the following:

• Act like us 'in public.'
• You are totally okay only as long as you act like us 'in public.'
• All members of your group are totally okay only as long as they act like us 'in public.'
• Not acting like us 'in public' is unfortunate, indiscreet, and blameworthy.
• We are bing nice by accepting you the way we do.
• If we did not accept you or you did not appreciate us for accepting you, you would not be totally okay, so do appreciate us for being nice and compliment us when you can.
• Although you can see or imply that your group is being oppressed by other members of the dominant group, do not see or imply that you are being oppressed by us liberals."

Examples she gives are 'apples' (Native people who act white) and lesbians who downplay their sexuality when around straight people (eg by not being affectionate to their partner in public). I think this pattern is extremely common among disabled people. One woman with a spinal abnormality describes doing this until she became pregnant. I have experienced the pressure not to act autistic, particularly with those who don't know I'm autistic but even with those who do. The only people I stim in front of without it being an effort and scary are my parents and some developmentally disabled people.

This post is getting pretty long, so I think I'll stop and comment on other parts of the book at another time.

DSM criteria on my website

I've started putting DSM criteria on my website, for the following two reasons:

Awhile back I tried to find older DSM criteria (I believe DSM-III-R but can't remember exactly) for some conditions and discovered that the only DSM criteria available on the Internet, that I could find by googling, was DSM-IV. History is important, and I'd like older DSM criteria to be publicly available so people can see the history of the DSM.

Recently I happened, on impulse, to photocopy a substantial chunk of the DSM-III and DSM-III-R while I was at the Health Sciences branch of my local universary's library.

So anyway, on my page I've put up the DSM-III and -III-R criteria for conduct disorder, the autistic spectrum and ADHD so far, and linked to the DSM-IV criteria. I will do more conditions, and probably put up my own summaries of the changes in the criteria and what I think about that (for example, DSM-III had a category called Childhood Onset Pervasive Developmental Disorder which was most likely roughly equivalent to DSM-IV's Childhood Disintegrative Disorder), as time goes on.

Counselors for Neuroatypical People

I'm autistic and also have PTSD (post traumatic stress disorder). The latter is something I've often received counseling for, but sometimes the fact that I'm autistic and most people aren't gets in the way.
There are two kinds of problematic counselours when it comes to me being autistic - those that think they know autism and those that don't know anything about autism. The first group is by far the worst.
I had a counselor like this. She was a hard of hearing woman with much experience counseling autistic people. She was firmly of the opinion that anyone who was different in any way should try their best to conform. (One of the first signs of this may have been when I innocently commented, upon her saying she was hard of hearing, that I'd noticed she had a slight hint of the 'deaf accent'. She seemed dismayed.) She kept nagging me about stimming and decided my biggest current problem was that I was homeschooled, and she must find me a special education placement. I spent my entire time with her arguing and treating her like an embodiment of one of my teachers.
It's been noted by many autistic people that autism 'experts' really don't have a clue about what it's like to be autistic. The worst thing is that they think they do. So if you try to tell them they're wrong, they often won't listen. They'll sometimes even try to tell you how you feel, as opposed to how you really feel. In my experience, also, they're prone to view autism as a problem, rather than accepting that I really am fine with being autistic.
The second type is much preferable. This is the type I usually have. Generally, they are people who specialize in trauma or more specifically sexual abuse, who, unlike autism experts, really do understand the people they specialize in treating (because the literature on trauma and recovery is much more informed by actual trauma survivors than the literature on autism), and though they know even less about what it's like to be autistic than most autism experts, they know they don't know. This means they are teachable, because they accept that I actually know more about what it's like to be autistic than they do.
However, with the second type, I spend far too much time trying to teach them, and every bit of advice they give is generally aimed at neurotypical trauma survivors, and therefore may not apply very well to me. The biggest problem is that I don't always know how to tell if it applies or not right away, and if it doesn't I can't necessarily explain why. I found it very difficult, for example, to explain why cognitive behavioral therapy does not apply at all to me (I tried to explain why in this post).
Oh, and by the way, here's a survey about emotional experiences:
Click Here to take survey