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.

Creating Panic

I've been meaning to write this since we went to the ARM conference, but I've been putting it off thinking I'd link to our conference presentation with this. Then my mother pointed out that our conference presentation has some stuff about me, such as pictures, that I'd rather not have people viewing over the Internet. So, if I can think of a way to edit it so it doesn't reveal stuff I don't want revealed, I'll look into to putting it up, but in the meantime and in case I don't put it up, here's the post I was thinking of.
I've known for a long time that many parents of autistic kids are desperately worried about curing their children. It's hard to do much in autistic self-advocacy without seeing that. And I knew the 'experts' were reflecting this desperation by peddling miracle cures. I just sort of assumed that parents were so desperate because of societal intolerance for difference, and that the experts were simply responding to that. This is the idea encouraged by a lot of criticisms of quacks 'taking advantage of people's desperation', an idea fairly accurate in the area of cancer treatment that has also been applied to autism treatment.
But my mother's conference presentation argued something different. She looked at the stuff that I found, and suggested that the experts were in fact creating this desperation, not just responding to it. When they say unfounded claims like '90% of untreated autistics are institutionalized' (popularly tossed around by ABA proponents, with no reference ever being given) or 'you can't wait nine months for an assessment, you can't even wait two months' (which was said by Dr Greenspan in the book Could it Be Autism?), they aren't just getting it wrong, with no motive for it. They are, in fact, creating demand for their product, just like advertisers do.
This doesn't mean society's attitudes towards difference aren't part of it. They are. The very reason these dire threats carry so much sting is because people are scared of disability. And they also feed into this, in that such threats make people even more scared, but I know that fear of disability came first. In fact, in the 1800s, the 'experts' played a much more positive role, counseling against things like keeping your disabled son locked in the attic and saying 'we can teach them something' (see On Some of the Mental Affections of Childhood and Youth, by John Langdon Down). That worked to bring them into their role of treating and educating developmentally disabled people. Now they're doing something else to maintain and build that role.
And while I don't know what the 'experts' are thinking when they do this, I think many of them are well-meaning. This might, in fact, be unintentional, be them simply repeating what they've been taught from outdated case reports of institutionalized and neglected or just simply unusually severe cases, and comparing those reports with the children they've seen with treatment. But in some cases, it could actually be intentional.
What made me realize this was my father's obsession with Westerns (I'm not sure why, he always criticizes them as poorly written, but he likes to read them), because he happened to mention that many doctors in those stories would exaggerate the severity of their patients' conditions so that when what they predicted didn't come true, their treatment would get the credit. And when a child who was described as echolalic and noncommunicative (as those terms are used, not always accurately) at 5 years old develops communicative speech and isn't institutionalized, if parents knew that Leo Kanner's follow-ups back when psychoanalytic treatment was in vogue found that outcome to be relatively common for kids who were echolalic at 5, they wouldn't be as grateful to the ABA therapists as they'd be if they'd been told their child would still be echolalic and noncommunicative as an adult.
This also explains the tendency for parents to actually view their children more negatively after diagnosis. Although parents who misinterpreted troublesome autistic behavior such as literalism or sensory overload as defiance or manipulation often view their child more positively after they are diagnosed, many parents actually viewed many of their children's differences fairly well pre-diagnosis. One parent, in a book I read, talked about how she though her kid was very focused, organized and intelligent - after diagnosis, she interpreted the same behaviors as indicating overfocused attention, repetitive play and splinter skills. It may be partly an accurate shift in expectations, since a non-autistic gifted child typically does better than an autistic child, but partly it's that such behaviors are overtly recategorized and relabeled, even when both labels are equally accurate or the pre-diagnosis one was more so. Cute little quirks suddenly become signs of a disability (another example, in Her Name is Montel, is when Montel's father finds out her odd catlike cry is a sign of Cri-du-Chat Syndrome).
Here are what I see as the major components of how the 'experts' create panic and sell their therapies:

• unrealistically negative prognosis - such as the 90% institutionalized quote. This can occur without any of the other features in doctors who aren't selling any treatment, but often goes along with promises of miracle treatments to change that prognosis.
• reframing neutral or positive traits as negative - as seen above in the shift from seeing a long attention span to seeing overfocusing.
• creating urgency - 'you can't even wait two months'. This means that parents do not have a chance to think through what they are doing before they do it.
• rosy promises of the treatment - such as, in ABA, the repetition of Lovaas's 47% cured statistic without explaining how Lovaas defined cure, how his treatment differed from modern ABA and the lack of independent replication or evaluation of his 'cured' cases.
• a theory that is never studied, changes when challenged, or both - this is also seen in ABA with the repetition of the neuroplasticity theory (ABA changes the brains of children so dramatically as to erase or reduce autism) in the absence of any study, or in the ever-changing ways the anti-vaccination movement finds to blame vaccines for autism.

(Can you think of any others? I'm sure I'm missing some.)
This shift in my viewpoint makes me more sympathetic to mothers, and also highlights the importance of critical analysis from multiple perspectives. I naturally tend to loook at autism from the perspective of an autistic person, while my mother sees it from the perspective of a parent of an autistic kid. Both of those perspectives, combined with critical analysis of the messages society is sending, give useful and enlightening interpretations that together can give us a more complete picture of what is going on.

Are Lovaas's 'Recovered' Kids Really Normal?

Most of you have probably heard of Ivar Lovaas's 1987 study in which he reported that 47% of autistic kids who got early ABA had 'normal functioning' and were therefore cured of autism.I just found a follow-up study published in 1993 that examined his experimental and control groups, including reporting test results for each of the 9 'recovered' kids (10-16 years old). The results are very interesting, and not exactly consistent with his claims.
WISC-R verbal, performance and full-scale IQ and subtest scores are reported. According to this source, a difference of 11 or more points between verbal IQ and performance IQ is clinically significant. Out of the 9 'recovered' kids, 7 showed a clinically significant difference between VIQ and PIQ by that definition (3 higher verbal IQ and 4 higher performance IQ).
The same source describes the use of a discrepancy calculation of subtests that are significant strengths and weaknesses, defined by being 3 or more points from the average. Normal kids typically have no significant strengths/weaknesses on verbal IQ, one on performance IQ and two on full-scale IQ. Assuming that more than that number of discrepant subtest scores indicates abnormal scatter, 5 children had abnormal scatter (all of them showing VIQ/PIQ discrepancies).
On the Vineland Adaptive Behavior scales, all (except one kid who wasn't tested) scored within the normal range on all areas, but 5 had at least one score in the borderline/low normal range (70-85). I don't know of any norms for discrepancy between Vineland scores and IQ, but 6/8 of them had Vineland scores at least 11 points below IQ (Vineland scores have the same normal range as IQ). This suggests they were functioning more poorly in practical areas than their IQs would predict. (And makes me very concerned for these kids, as an unrecognized mild self-care impairment can cause serious problems once you enter adulthood.) In terms of the Vineland Maladaptive Behavior Scale, 3 kids had clinically significant behavior problems on that scale.
On the Personality Inventory for Children, 6 scored in the clinical range on at least one subscale (2 not tested). Lovaas noted high scores on the Intellectual-Screening subscale could be explained by their history of classic autism, because many of the questions on that scale are retrospective, such as when the child started talking. Excluding that subscale (on which 3 had scores in the clinical range), 4 had scores in the clinical range on at least one subscale (not counting the Lie, Frequency and Defensiveness scales that try to test how honest the person was, on which 2 kids scored highly - one of whom had no other elevated scores). Another 2 had at least one score in the borderline range, though none in the clinically significant range.
Overall, combining all three measures, all the children had definite abnormalities (VIQ/PIQ discrepancy and/or clinically significant behavior problems). Not enough information is available to decide if they were still autistic (though many of the abnormalities they showed are common among autistics) but they certainly weren't neurotypical.

References:
Lovaas (1987): Behavioral treatment and normal educational and intellectual functioning in young autistic children. Journal of Consulting and Clinical Psychology, 55, 3-9

McEachin, Smith & Lovaas (1993): Long-Term Outcome for Children With Autism Who Received Early Intensive Behavioral Treatment. American Journal on Mental Retardation, 97(4), 359-372

[Correction: one child, RS, should actually be classified as possibly abnormal rather than abnormal. I misread one of his PIC scores.]

The Social Value of Demand Avoidance

I read a great book called The Wind Singer. In this book, a set of twins live in a very regimented, controlling walled city called Aramanth. One of them, a girl named Kestrel, is one of the story characters I've identified with the most. She is very idealistic, passionate, and stubborn. She is demand avoidant, though I wouldn't say she has the clinical syndrome characterized by that, because she's not autistic enough.
Anyway, no one in Aramanth is really happy, or at least not as much as they would be in a freer society. But most people can cope. Kestrel, however, can't cope, can't accomodate herself to her environment, so she's the one who changes it.
I'm not sure who it was, but someone once said that "The reasonable man accomodates himself to society, but the unreasonable man expects society to accomodate to him. Therefore, all progress depends on the unreasonable man." The way I see it, demand avoidant people are the 'unreasonable' people in that saying. We're like the canary in the coal mine - the same unpleasant things that others can tolerate are intolerable to us. Teachers with rigid ideas, rigid lesson plans, rigid teaching styles aren't really good teachers for most kids, but they are terrible teachers for demand avoidant kids.
I remember thinking about one girl I know with Rett Syndrome that she might in some ways be better off if she had meltdowns. Because she really needed to know what was expected - if she didn't know, she was confused and functioned much more poorly. But that's not that overtly unpleasant to other people or disruptive to the system she was in, and it was easy to confuse that with her disability. Whereas another girl I worked with, who screamed, self-injured and bit people when her routine was changed - well, everyone working for her made sure to keep a regular routine going, because they couldn't handle her like that. (Of course, in other ways the Rett girl was better off not acting like that - she didn't get hurt, she was probably less upset, and her helpers didn't get scared of her. Also, she was exposed to more things, some of which she couldn't necessarily handle, but some of which was educational or enjoyable in various ways.)
As for demand avoidant autistics, a good example is ABA. Most autistic self-advocates are either opposed to ABA in general, or at very least opposed to most/all ABA programs actually in operation. On Youtube, there are a lot of videos of autistic kids getting ABA, and seldom do those kids seem happy. They seem to be putting up with something unpleasant in exchange for a reward. ABA is all about the child accomodating other people, with no recognition that the child needs to be accomodated by others as well. And the ABA-treated autistics I've met all seem to have very low self-esteem (either that, or they used to and have recovered).
Now, most autistic kids can tolerate ABA, and make progress in an ABA program. Demand avoidant kids aren't like that. I've written elsewhere about how I would have acted in an ABA program, based on my behavior in a controlling school - this is typical of children with the subtype of autism defined by demand avoidance. And because of that, the advice about educating kids like me strongly discourages the use of ABA. I heard one parent say that she wished this syndrome wasn't considered an autism spectrum condition because the standard autism treatments don't work on these kids - I say, based on my experience with autistic kids of all kinds, that the methods that work well with kids like me also work well (with adaptation of course) with all sorts of autistic kids. And with none of the ethical issues of ABA.
Which brings me to my last point. Demand avoidance has a social value in sending the message that there is a problem here. But one danger is that the demand avoidant kid will be treated as an exception, and get what they need, without any benefit to the rest of the children who have a less obvious need for the same treatment. Just because a child doesn't absolutely need a certain environment doesn't mean they won't be better off in that environment. It's like if you saw the canaries in the coal mine having trouble breathing and just said "Oh, canaries need better air than this" without taking into account that the same air is harming the miners to a milder degree. We need to listen to the messages that these 'canaries in the coal mine' are sending.

Letter to the Autism Society of Canada

I just sent this e-mail to the executive director for the Autism Society of Canada.

"I am a 19 year old diagnosed with PDD NOS. I live in Saskatchewan.
Recently I found the National Autistic Society (UK) website and I cried. Why is the Autism Society of Canada so different from them? Last year, they launched a campaign called I Exist, about the issues of autistic adults. They really care about us, and are taking measures to help us. While the Autism Society of Canada mostly only mentions us to say how our lives are doomed because we haven't had early ABA. Your organization says 90% of autistic adults are institutionalized - if that's true, why aren't you helping us? Why are you not trying to get better lives for us, the support we need to live in our homes? Why is it that you're only helping children?
Even if you only care about your children, remember that the best estimates of effectiveness of ABA is 47% cured. That still leaves 53% of autistics who will need some kind of assistance throughout our lives. What are you doing to make sure the kids who aren't cured by ABA still get to have good lives? If you help us older autistics now, those kids won't have to struggle like we do.
I'm 19 and even though I'm very intelligent and can write well, I can't live independently. I have serious organizational problems - my bedroom, which I was solely responsible for keeping clean, got so messy I had to sleep on the couch and huge bugs were living in my room. I tried hard to keep it clean, but I just couldn't. On my own, my entire home would get like that. There are adult autistics who have had their homes condemned, and ended up homeless because they can't keep things clean. And no one would help them. My parents are willing to look after me, but what will happen when they die?"

What Was She Thinking?

Many people lately have been talking about Hannah Poling, an autistic girl with a mitochondrial disorder whose parents have received compensation because she regressed after vaccination at 19 months. I was thinking of blogging about how mitochondrial disorders are extremely rare, how the vaccinations she received were much better than getting one of the illnesses they were intended to prevent, and how simple measures such as reducing fever, ensuring that the child eats plenty even when sick, and spacing out vaccines (she got 9 at the same time) could prevent other children with mitochondrial disorders reacting badly to vaccines.
But after watching the videos, I've thought of something else. I watched this 9 year old girl sitting there, between her parents, as they talked about the vaccines she got and how they affected her. I heard her parent describe all the ABA treatment she got. I saw the pained look on her mother's face, the 'protective mother of a hurt child' body language she gave out. I saw a girl who seemed a lot like me and many children I know. I saw a girl who talked with her mother about the picture she was drawing, was bothered by some kind of microphone or something that she was wearing on CNN, and had movement quirks typical of autistics, more prominent but similar to my own movement quirks.
My big question is: What was she thinking? How did she feel? What was it like for her, to hear her parents describe her 'descent' into autism, to be a silent observer to her parents complaining about her behavior and expressing their pain?
And then I think about the broader context. She received ABA, so I think about her sitting at the table, putting up with (or protesting) someone giving her an unending series of commands. She lives with these parents every day, so I think about what that means. She probably hears them explain her problems to doctors and teachers and maybe even strangers. And how do they react when she acts strange? If she expresses an unusual desire, like the boy who wanted to dress up as a lamppost for Halloween? They're clearly quite loving, especially her mother, but they've spoken publicly about her being damaged, with a lot of pain evident. Do they express this in their everyday lives, or are they more like the mother of an autistic boy who told my father 'this is as good as it gets' and apologised for him not being a typical birthday guest, but was really only putting up a defense because she didn't realise we were so accepting?
So, my blog entry, rather than being a bunch of facts, is really more a bunch of questions, about the person most centrally involved in this case, but whose viewpoint has been considered the least. What is it like to be Hannah Poling? What was she thinking while CNN videotaped her?

YouTube videos of autism treatment

ABA:
http://www.youtube.com/watch?v=aqIs2eURfF4
http://www.youtube.com/watch?v=5FNIFstq8eA

play therapy/Floortime:
http://www.youtube.com/watch?v=4gmGj8Yn0x4
http://www.youtube.com/watch?v=g6-spzX1mow

animal assisted therapy:
http://www.youtube.com/watch?v=Ff5UhjNWQg4
http://www.youtube.com/watch?v=12nNXFCe-18
http://www.youtube.com/watch?v=Cl8fnHske4E

assistive communication:
http://www.youtube.com/watch?v=s4GAX-IXE_k
http://www.youtube.com/watch?v=TxNR_jePRj8
http://www.youtube.com/watch?v=5AwpWclyjYo
http://www.youtube.com/watch?v=YW6H5_hPqlM
http://www.youtube.com/watch?v=Fw3bLQjapxI
http://www.youtube.com/watch?v=S7ECdtkfROU
http://www.youtube.com/watch?v=ay3nn2Eipm8

occupational therapy/sensory integration therapy:
http://www.youtube.com/watch?v=jbm0Q4HzNhU
http://www.youtube.com/watch?v=5NEROMYo0mw
http://www.youtube.com/watch?v=dB5hsYRlmfA

RDI:
http://www.youtube.com/watch?v=8_DJ_1H7JXE
http://www.youtube.com/watch?v=bF1G6LTFR6Y
http://www.youtube.com/watch?v=F2APopgPjxQ

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.

It's Become Personal

When I first got involved in autistic rights, it was mostly an intellectual feeling of wrongness. I suspected I was autistic, and later knew for sure, but it didn't personally affect me much. Most of the contact I have with overtly anti-autism people is generally a) on the Internet, and b) initiated by me (I have plenty of contact with people who have no clue about autism, but are generally willing to take my word for it, though). The few overtly anti-autism people I've met since leaving school in grade 7 I am usually fairly able to defend myself against. They aren't that big a problem for me.
So at first, I was arguing on intellectual grounds, with little emotion. Not to say that I didn't care, I did, but in an intellectual way. The autistic people I advocated for were abstract to me.
But then I started volunteering with disabled kids. First, I participated in an ABA gymnastics program, with autistic kids and neurotypical kids. But ABA tends to keep you distant from the kids. Next, I volunteered with a program helping autistic kids train their own dogs, as assistance animals. But that didn't last long. Recently, however, I've been volunteering with a variety of disabled kids (though the program coordinator prefers to pair me with autistics) in a physical activity program.
In volunteering, I've met autistic kids. I've also seen the harm people do to them with good intentions. The worst example was twins with separation anxiety in the ABA program whose mother was used as a 'reward' (really, it was temporarily stopping a punishment). Another example, that I actually did more to help, was an autistic boy being gently restrained and redirected for hand-flapping. I certainly convinced them not to require me to do that, and I think I probably convinced them not to do it either by example.
The thing is, now it's not so intellectual. Now, I read things written by a parent of an autistic kid and imagine the parents of the kids I've met saying that. I read about murder of autistic kids and instead of just seeing a wrong, I see a child who died. I read stuff by professionals working with autistics and see the children they work with being treated in the way they advise. One professional said, in a book I read, that 'being teased is what happens when you act weird' and I imagined a young autistic bully victim hearing and believing that. (She actually said this to an autistic boy.) I read stuff by autistics who hate autism and my heart cries out with the thought that the kids I know may feel the same way.
It's still intellectual, because I still have reasoned arguments and logical conclusions. But now, it's also emotional. I realize more that real people are being actively hurt by these attitudes, and I feel intense empathy for them. To those who say 'spend time with an autistic child and their family and you will see how terrible autism is' - I have spent time with them. And rather than seeing a terrible disability, I see a terrible society.

If I'd Had ABA

[Note: ABA stands for Applied Behavioral Analysis, a common therapy for autism that has some serious ethical concerns associated with it.]



I've been reading a commenting on a book about ABA treatment for autism, that I got free in a conference. I have also worked as an volunteer in an ABA program, and been the recipient of treatment from my teachers which differed from ABA mainly in being less effective at reaching the intended goals. (For example, they never grasped that being sent home from school when I misbehaved wasn't an effective punishment - it must be time-out from reinforcement, not time-out from constant conflict, in order to be a punishment.)

My autism was diagnosable around when I was 6 or 7 years old. (However, I wasn't actually diagnosed until I was 15.) Here's my suspicion of what would've occurred if I had received ABA therapy at that young age.

I would've been considered seriously non-compliant. My instinctive reaction to someone trying to control me is to fight them on almost everything. I even developed an aversion to using a tissue to blow my nose because it was so incredibly important to my teachers.

They would've put me on a program to encourage compliance. What they generally do, according to my book and the head of the program I volunteered at, is to increase rewards and start giving orders that are very likely to be followed. I would most likely have resisted those, developed an aversion to whatever rewards they did and refuse to obey any command of theirs even if it was something I wanted to do. If they told me to eat some chocolate I might've even refused, or if I obeyed it would be despite their command. (And I'd feel bad about it afterwards.)

If it was a reward that was only available when I complied - as is recommended - then I'd definitely get an aversion to the reward. In my mind, it would be linked to the power struggles. So anything I actually liked about it would probably be neutralized by them using it to reward me. This has happened with things the school got me to do, like skating. I used to enjoy skating before I went to school, but after a few times skating with my school I hated it.

If they followed the ethical standards laid down for ABA, I doubt they'd have ever gotten me to comply more than rarely. Letting them control would've felt worse than missing out on the rewards. If they used painful aversives, maybe they could have broken me. And I use the term 'broken' advisedly - it would've been the same psychological thing as breaking someone in torture. Indeed, ABA with painful aversives (such as the Judge Rotenberg Center does) is pretty much indistinguishable from torture. The few times I gave in, I held out in my mind, thinking intensely to myself about how much I disagreed and feeling very helpless and angry and disgusted. It was awful.

There might have been moments that were good. Moments where they seemed to become a different person from the one constantly pressuring me to comply. I know I was not myself when I worked in ABA. I had a fake persona of 'ABA therapist'. Some people say ABA makes kids robotic - I think the therapists are more robotic than the kids. (Ironically, behaviorism has no way to explain the behavior of behaviorists.) If the therapist ever let his/her mask down, I'd probably have treated them like two distinct people - the ABA therapist and whoever they really were, who'd probably be a nicer person, at least from my perspective.

Certainly ABA would not have helped me. But I'd have been lucky, because I would be more myself than most autistics who get ABA end up. I'm an idealist and a rebel, like Kestrel in The Wind Singer. Kestrel rebelled against the rigid rules of her town Aramanth, I rebelled against the rigid rules of my school. Neither of us bend - we stay rigid unless it's strong enough to break us. People say it's better to bend than break, but those who bend are damaged more by mild abuse. Those who don't bend until they break are less damaged by anything which isn't strong enough to break them, but more damaged if they are broken.

However, ABA generally requires parental consent. My parents were a major source of strength for me because they stood by my right to be myself, and didn't want the teachers to change me into their mold. So had I been diagnosed younger, I still might not have gotten ABA because I doubt my parents would have accepted their opinion that I had a problem. (After all, they didn't when my principal said I was AS when I was 12.) But if they had, I'd have known my parents agreed to this. I'd have known it was their choice. I might not have resisted then - after all, it's much harder to write off your parent than your teacher.

Even in a Very Simple Life Form Behavioral Analysis is too Simple

I like to play a series of games called Creatures. In these games, you have creatures called norns which you raise. There are also grendels and ettins, which differ mainly in one gene that tells the game what species they're supposed to be. (All examples of specific types of creatures are taken from Creatures 3 and some are not accurate for other versions.)
These creatures have digital DNA and very simple brains capable of learning. You can tickle them to reward them and slap them to punish them.
One example of how behavioral analysis doesn't explain everything is that although slapping a creature in this game is fairly effective in stopping most unwanted behaviors, it increases the tendency to run from whatever they're looking at. That's because they get scared from getting slapped, and run away from things when they are scared.
Another example is that something can have different effects on different creatures. For example, the standard norns, if they eat detritus (rotten food), they get pain, and therefore learn that they shouldn't do that (which is a good idea, because they are poisoned from it. But one type, called Toxic norns, are helped by things that are normally poisonous. Instead of getting pain from eating detritus, their hunger is decreased by it. So a normal norn learns not to eat detritus while a toxic norn learns to eat it, simply because the action has different effects on them. This is genetic.
Also, if you take a newborn normal norn and a newborn toxic norn, who have never before eaten anything, and offer them detritus, the toxic norn is much more likely to eat it. This is because they have instincts for eating detritus. Another example is that the standard grendels have instincts to hit norns (they're supposed to be the 'bad' guys). You can train a grendel not to hit norns, but these instincts will still pop up occasionally, and you'll have to reinforce the lesson. They will never be as safe for norns to be around as if they didn't have those instincts.
Drives are also important. Grendels tend to get angry easily, especially around norns. They will sometimes hit other grendels simply because they are angry and hitting creatures, of any type, reduces anger.
[Edit: On a completely different topic, I found out today that the song Mrs Robinson by Simon and Garfunkel is about an old woman entering a nursing home and how patronising the staff is towards her.]