The Misbehaviour of Behaviourists
The Misbehaviour of Behaviourists - Discussion
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Michelle Dawson 650
06-03-2004 11:10 PM
Hi again John,
I just spotted your message re funnel clouds. Are you aware that autistics have a thing about extreme weather? Or anyway, lots of us do.
Coming back from IMFAR, we got a few interesting messages from the pilot about beating some weather into the Minneapolis airport. We arrived fine to find out there was a tornado warning. It was great to watch. The tornado may not entirely have materialized, but that was extreme weather. People yelled at me to get away from the windows, to which I was glued. I was quite upset I couldn't go outside, and very envious of those who were.
I was the only letter carrier in my post office who delivered her entire on-foot route in the ice storm of 1998, until we lost power in the post office and had to give up. I loved it. It was incredibly beautiful, with trees creaking and arching over streets to meet each other. I would clamber up someone's icy walk, put the mail in the box, hear a loud CRACK behind me, and have a large tree limb fall at my feet blocking my way out. I've rarely been happier. The rain froze on my clothes and my cap and I worked in my shell of ice, unable to stop smiling.
Never met a bear.
Michelle Dawson 649
06-03-2004 10:58 PM
John, that study didn't just take up time and space, it was funded. By the government.
Seems I remember there is an annual award ceremony for incredibly silly science. Ignobels? I guess the jury didn't catch wind of this one, otherwise surely it would have achieved distinction.
By the way, I found that you seem to be right about Dr Greenspan. At least so far as I can tell. The "reification" thing is in an AutCom article. I can't quite follow the logic and he wisely doesn't mention Rett syndrome. All of us are just experiencing "multi-system developmental disorders". And the last sentence defeats me. Well, I wrote way back on this board that his theory is too sophisticated for me. In fairness, he might have evolved since this article (1995), which is here http://www.autcom.org/relationship.html , and he's paraphrased throughout.
I figure floortime is probably better in practice than in theory.
Apart from assuming that our order and progress of develpment is totally defective (and why should he be any different?), Greenspan's assumption that the "dance of relationship" is disrupted uniquely by the autistic in the relationship is another classic example of lack of reciprocity in non-autistic experts. It's an epidemic.
06-03-2004 10:36 PM
My favorite "almost get killed in the woods adventure", involved me running across a black bear at camp, who very kindly decided not to eat me, and walked off.
My other favorite camp adventure involved a few lively hours spent with funnel clouds forming above us, (missed us and got another local area).
06-03-2004 05:11 PM
Yes, I have to accept the good with the bad when I use numbers to make a case.
Thank you for the study, I was expecting the absurd and was not disapointed.
I know one of the authors of that study.
I am a little displeased that valuable journal space was alotted for this study. Not to mention the time wasted reading the full study (I had already read it before participating here).
I was debating giving my aquaintence and her collegues the official "It Took Research For You To Figure This Out? Award."
However, I think I understand (maybe) why this study happened and why Iwata & friends, let it fly.
There is an internal movement in the DTT folks of ABA to provide some documentation in research of even basic and obvious things. There is a real push for students of DTT to provide more specific research on the sub procedures and behaviors. This is part of a larger general trend in ABA towards function based interventions/teaching. If I had to make a guess, I would say that we will we see more research of the same sort for a while. Other studies may be of more value, or they may be more of the same. We will have to see.
Michelle Dawson 646
06-03-2004 02:01 PM
There is a correlation between gratuitous threats of violence and one's own credibility, regardless of the genuine difficulty of one's own current position.
There are also ridiculous cognitive studies in autism. However, in this field, we don't use the quantity of published studies to make our case. Behaviourists, including John, have done this, leaving themselves vulnerable to be confronted with the worst of their field.
Presenting the absurd study is a credible attempt to point out the weakness of the proof-in-numbers approach.
David Andrews AppEdPsych 645
06-03-2004 01:44 PM
Correlation between ear-covering (stereofuckingtypical????) and noise? Emitting behaviour?
Biggest load of bollocks I ever saw.
And these folk think they are fucking scientists?
I wonder if I could get a positive correlation between the number of serious beatings administered to a behaviourist and the amount of sense drummable into his/her dense head!
06-03-2004 10:23 AM
I shouldn't be admitting this, but I did wet myself when I read that.
06-03-2004 05:48 AM
Edited by author 06-03-2004 05:50 AM
"> We studied stereotypical ear covering in a child with autism. Results of a descriptive analysis were inconclusive but revealed a correlation between ear covering and another child's screaming. An analogue functional analysis showed that ear covering was emitted only when the screaming was present."
riiiigh... notice all the screaming kids in this picture (spot the autistic anyone?!)
David Andrews AppEdPsych 642
06-03-2004 03:25 AM
"> We studied stereotypical ear covering in a child with autism. Results of a descriptive analysis were inconclusive but revealed a correlation between ear covering and another child's screaming. An analogue functional analysis showed that ear covering was emitted only when the screaming was present."
And THAT deserved an entire study?
This is behaviourism taking the piss out of us, isn't it?
This has been my main problem with behaviourism all along: it tells us nothing we didn't know already, and it doesn't really explain anything AT ALL, and anything that can be described in behaviourist terms can be described AND explained better in other terms.
And they do this?
From the sublime to the fucking ridiculous!
Michelle Dawson 641
06-03-2004 12:32 AM
Edited by author 06-03-2004 02:20 AM
Dr. Gould's "Five Weeks" is in the book "Questioning the Millennium" (1997, pp163-179). I confess I haven't read it myself, which is why I asked. I've read about it. It's about autism and communication, and from its description (the description is extraordinary) risks being the kind of information that might help you with your ethics.
I once worked as a land surveyor, and a lot of that was in the woods (this was in Western Canada). Some of it was messing around in the wilds of suburbia, but sometimes we got to go (boldly) where nobody else was (yet) very interested in going. We did have to fell trees, but tried to avoid it if possible, and when it was necessary to take a tree down, we often used axes. Chainsaws are terrifying. None of us (small company with two crews) was concussed by a falling tree, attacked by a wild animal, or buried by a backhoe (though I came close to that once). We did once play chicken with an oncoming train when we were taking line and distance on a railroad track. Two of us were on the safer (by about 300m) end of that, looking through the transit at our colleague. He became ominously dwarfed by the front of a rapidly approaching locomotive, all etched in perfect optical detail. We were so impressed with his leap to safety that we nearly forgot to get ourselves and our equipment out of the way.
Here's your going-away abstract,
>Tang, J., Kennedy, C. H., Koppekin, A., & Caruso, M. (2002). Functional analysis of stereotypical ear covering in a child with autism. Journal of Applied Behavior Analysis, 35, 95-98.
> We studied stereotypical ear covering in a child with autism. Results of a descriptive analysis were inconclusive but revealed a correlation between ear covering and another child's screaming. An analogue functional analysis showed that ear covering was emitted only when the screaming was present.
I've now read this study, and can report that it only gets worse. This is how it ends:
"Whether a similar relation between ear covering and noise occurs for other children with autism awaits further investigation. However, the current data set implicates a previously unidentifed source of reinforcement as one possible cause of stereotypical behaviour."
You have to agree, it's a classic. It should win a prize.
06-02-2004 11:00 PM
Nope, I am around until Friday.
I have not read Dr. Gould's piece on his son, but I will look for it.
I am aprehensive about what article you've found, but you peaked my interest, so now I have to know.
For me, going into the woods means going to a large camp for young adults, but is definatly in the hinterlands and fairly cut off (no internet). The camp is departmentalized into sub areas for its 60 staff members, and the only ones who really have to worry about being crushed by felled trees or run over by big machines are members of the conservation department (This is rough work but is a interesting department to work in). Of course I have a teenage aspie mentee/friend who wants to work in that department, so my advice for him is to know when to duck/jump out of the way.
Michelle Dawson 639
06-02-2004 09:23 PM
John, if you're still in town, I promise that if I ever emit the words "neurologically ready", I'll issue an immediate written apology.
Also, today I was sent the abstract of the most absurd behaviour study I've seen, so far. I can't believe I missed this one (by failing to use specific behaviours as search terms--inexcusable). But certainly it's among the hundreds--soon to crack a thousand--studies used in order to proclaim ABA as scientifically proven. And it's in JABA, under the eyes of Iwata, and it's recent, and it's autism.
Let me know if you want it as a leaving-for-the-woods present. I'm making the unforgivable assumption that the abstract reflects the article, but the abstract's a gem.
I've one last question (being unaware of whether I'm gabbling to thin air), which is whether you've read your hero Stephen Jay Gould's piece about his son, "Five Weeks".
David Andrews AppEdPsych 638
06-02-2004 08:40 PM
I want licence to use one of those when I'm teaching parents like Weintraub! Shock a bit of humanity into the bastards. I loose my patience with that lot very easily these days. I shouldn't.
Balls to that.
We ALL should!
Deleted by topic administrator
06-02-2004 06:06 PM
I posted the cattle prod story on my livejournal and one fellow who knows about SIB said that it's possible that the shock acted as a painful stim and calmed him down. He wondered if it would be ethical to give the man his own shocker...
Certainly, would be ethical if he was allowed to use it in self defense!
It's just too much power in the hands of underpaid staff. My guess is that some unethical people would enjoy aggravating him to the point of hitting himself, just so they could get out the taser or whatever it is.
As for how they discovered the effective cattle prod, well, they sat around at lunch one day and tried to figure out ways to hurt others without leaving marks. Much like the CIA.
gee, they could be standard issue in all kindergartens and junior high schools.
Makes me wonder how much alone-time the man who hits himself has. I think if I lived in a group home with a bunch of noisy active people, I'd start hitting myself, or banging my head on a wall...
06-02-2004 04:13 PM
Yes Michelle, it does seem a little suspicious, doesn't it?
Perhaps they saw him sticking his fingers in something and saw that he behaved more favourably afterwards, but we will never know unless the poor bugger learns to talk. I wonder if they actually try to teach him anything or is he just kept at this place?
06-02-2004 03:26 PM
Thanks for the bullying examples and solutions.
I don't have much to say about /m631. You nailed things pretty tight. I had maybe some minor disagreements on the availbility of the information (but you already know this). You also already know my skepticism towards "neurologically ready", arguments (not that you made one per se). I have little to disagree with here. I continue to be curious about the wrong order of development thing. Thanks again Michelle.
Michelle Dawson 633
06-02-2004 03:03 PM
Edited by author 06-02-2004 03:08 PM
"The idea to use an electric prod originated at a special school in Florida, which Bradley attended from age 4 to 9, she said. Fran Bernstein said she began using the shocker when Bradley was about 14."
What I always wonder about is the sequence. Did someone at the "special school" say, "We should try an electric prod, let's go buy one." Or did they just have an electric prod around, and someone said, "Let's try this, it might work."
06-02-2004 08:32 AM
Michelle Dawson 631
06-01-2004 08:02 PM
Edited by author 06-01-2004 08:09 PM
Hi again John,
I don't really expect you to conjure another intrepid behaviourist. But surely more than one of you enjoys a challenge?
I don't know if I can sufficiently define ethics for you. Ethics has to do with behaviour, about what to do (as opposed to beliefs). Maybe this is why not defining it bugs you? Ethics is about asking what's the right thing to do. Even if something can be done, even if it's legal, even if it's popular with the majority, even if it's scientifically proven, it might be wrong anyway. Checking for this is doing ethics. You also have to check, when you are doing good, that you are not doing an equal or greater wrong. That's ethics also.
I've done two ethics cases and won one and lost one (the lost case is http://www.sentex.net/~nexus23/naa_plag.html). In both cases I had to argue if an action, or many actions, were right or wrong. Ethics (and I'm flying by the seat of my pants here) is evidence based and you can't do ethics without accurate information. Lousy information results in lousy ethics. There is an obligation, if you want to be ethical, or argue that someone else is not, to impartially (in every sense) discern and present the facts. The role of subjectivity is limited by recognizing it as a pitfall, and through safeguards like requiring scrutiny of the evidence.
You're saying, I think, there's not enough accurate information for you to be comfortable making some decisions that include ethical considerations. If this is a fair interpretation, it's a good observation. You don't have enough information. I disagree about the availability of this information, though, as you know.
Regardless, I think you can be ethical by balancing interests with full consideration of your own uncertainty. What gets the benefit of the doubt? If you assume your autistics can't communicate except what you teach them to, you're preventing the possibility of any other kind of communication. Same problem applies re learning and intelligence. Removing such essential possibilities without very thoroughly checking (your experience, autistics' experiences, the science) is unethical, even though you could, by being partial, find science to justify this. The risks of ignoring or otherwise punishing autistic communication, learning, and intelligence greatly outweigh the opposing risk of not getting through the day's assigned tasks. I agree there are risks on both sides.
Self care is a really tough one. The risks on either side are big. But there is excellent evidence of autistics learning in the wrong order, and doing it well. I think your solution here would be to inform yourself better. You don't have sufficient evidence to make an ethical decision in any one case. You risk making errors on both sides just because you don't have the facts. I think also if you looked, you could study this. I honestly haven't. But there will be some science somewhere, and in this case, the scientists otherwise having (again) failed to study something critical, you may have to listen to us before making up your mind.
06-01-2004 06:31 PM
Deleted by topic administrator [...]
Michelle Dawson 629
06-01-2004 05:45 PM
Edited by author 06-01-2004 05:47 PM
Re bullying, the first case I know from second hand, from a parent of a kid going to a school where there was an attempt to integrate an autistic student. The results were not good in predictable ways, including bullying of the student.
The school dealt with this by using the documentary I was in. This had been broadcast (in French) across Canada and elsewhere in the French-speaking world. They obtained it and showed it to the kids, the parents, the administrators, the teachers. The kids and the parents decided we were human after all (it's a very tough and engaging documentary with no happy ending, dealing with things like self-injury and bullying and day to day stuff). They decided this autistic kid might be kinda cool. I found out when a parent of one of the non-autistic students stopped me in while I was working and explained what had happened and thanked me. He said that when the documentary started he was startled to find his letter carrier in it.
I've heard of a similar situation, where the prospect (not yet the actuality) of an autistic student in a typical school was greeted with fear and trepidation. The solution was to send an autistic woman over. She went in her car in the middle of her workday. She was obviously autistic, hummed and flapped and so on. But there she was with a car and a career. The fear dimished greatly. That's not a situation involving bullying, yet, but bullying often comes from fear.
That was the problem in case two, which happened to me. The five-minute solution. That was all the time I was allowed to speak with my hundred-plus coworkers. I won't go into details of what had happened, but the short speech below changed everything permanently re my coworkers. Nothing ever has (or ever will) have any effect on management, so this is not fool proof, so to speak. I wrote this for two other people who asked about it, so you might have to use your imagination a bit. I can add that the documentary (above) did not help in my workplace; the problems were too entrenched. Here goes,
(the union guy introduced me briefly; I needed the meeting because the legal case settlement had been violated in that my employer (CPC) refused to post it in my workplace as promised)
1. This meeting isn't about blame. I don't care about blame.
2. This meeting isn't about autism. I'm autistic, for those who don't know, but this meeting isn't about autism.
3. (I thanked a few people, without naming them, who noticed something was up and talked to me)
4. This meeting is about consequences. (I outline the legal case; includes written accusations, courtesy of my co-workers, that I was about to show up at work with a gun; I talk about the settlement, which was national-level apologies & $10,000 I gave to charity).
5. (Having explained how much trouble I'm still in) So why am I still here? Because my work record is perfect. I never take sick days, I work with injuries, I always finish on time. This is bad for everyone, to have someone on the workfloor who has no rights.
6. It took 3 kinds of people for this situation to have got so out of hand; the people who started the rumours; those who thought it was fun and kicked in; and those who knew and did nothing.
7. If you are going to spread information about a co-worker that could lose her not only her job, but her freedom, you should make sure you have some facts.
8. There is going to be human rights education done by CPC, supposedly, there will be posters and so and, and a lot of words and rules that are probably hard to follow and easy to laugh at. I only have one rule. If you are not ready to say something to a person's face, you should think very, very hard before saying it elsewhere. This is easy to remember and also how you would like to be treated.
9. I was told over and over by CPC that autism is the problem here and I had to think about that a lot. I decided after a while that autism was not the problem. (I walk over to the shop steward--I had not warned him--and ask...)Are you Quebecois? (He says, yeah, of course) Well, then, I think you're dirty, crazy, and dangerous, because I know you're different, you're Quebecois, and I don't want you working with me. Now... is it your job to explain yourself to me? (The guy says no, of course not) Are you the one causing this problem? (The guy shakes his head, no way) Are you the one who's caused this racism against Quebecois? (No! the guy says) Well, I don't think autism caused this problem either.
10. There is not one set of rules and laws and a collective agreement for crazy people like me, and a seperate set for you, so if you diminish and mock my rights, you diminish and mock your own. Thank you (Leave room. Loud Applause. Many came over to my desk and shook my hand. Many told the bosses.)
That's all. The important thing is that this was not a "sensitization" approach, which often (I think you noticed) backfires or is only partially effective (I know a case in which it was totally effective, but the "sensitizer" was exceptional and was autistic). This was a human rights approach, which might be more efficient, especially if you only have five minutes.
None of this works with really little kids. I've no rules about what to do there, the situations all seem specific.
Deleted by topic administrator 06-17-2004 10:04 PM
michelle dawson 627
06-01-2004 04:36 PM
Re toilet humour, <sigh>, I'm just waiting for Freud to show up.
Re /m621, hard stares have *no* effect on someone who doesn't make eye contact. That's one for our side...
06-01-2004 10:32 AM
I found a good thingy about poo:
David Andrews AppEdPsych 625
06-01-2004 02:08 AM
And if Attwood can take 10 grand a day, I think I'll take a bill for 50 grand to yon Kit Weintraub for my advice and time.
She'd never pay.
But even SHE is the least of my problems just now.
David Andrews AppEdPsych 624
06-01-2004 02:05 AM
>Dave, I'll say it again: POO! What's happening is poo.
Not only is it POO, Lucas... it's fucking horrible stinky fucking POO!!!!
I recognise signs of depression.... in me.
05-31-2004 08:51 PM
Hi again Michelle,
I found a lot of great value in post /m605
In particular I think the following (summarized) points will be very valuable and I agree with them as stated:
Ethical questions have not been asked in DTT (ABA) by peer review.
DTT has not included review by autistics and should (we very much agree here)
Autistics must be seen as fully human (including human integrity) as anyone else.
Assessment of those who are different from the assessors may lead to unethical results
Practitioners (behavioral scientists too) must be aware of the differences in intelligence and learning, this may include aspects which would seem outlandish.
Communication is often missed (and a burden exists on professionals to recognize the communication)
To be ethical we must allow for options
There are other points I do not support at this time because I would like to see more direct scientific evidence, I am uncertain what implementing the points would involve, or I actually disagree. I will loosely summarize and discuss them.
Problems exist in the abstract/definition part of ethics. I am displeased that I was unable to pin down concepts to the term of "ethics". It seems to me that if I will use this term I should have a better idea of what it is. I agree that I may recognize when someone is not being ethical towards me, but this is subjectivity because another person may have an identical experience and not consider it unethical. I have concerns with this issue because I don't think we know how this will look or be implemented.
I am greatly concerned about the communication issue. I a trying to pin down concepts to it, and I am not doing very well. I wonder what is the definition of communication? I have failed when trying to define it in a way that does not require more definitions. I feel only somewhat comfortable with the last straw example (for children). I have seen times when I think we could better explain certain behavior in terms of a single behavior that has been proven effective. I would add that both of these concepts are used in behavior science. I do believe in the potential of the students I work with or teach others to work with to learn to be very communicative (despite problems defining this). But I am concerned about assumptions of certain abilities when we see no evidence for them. I think this has hurt people in the past (although I know assumptions the other way have also hurt people).
I am somewhat concerned about how we will use strengths as a bridge later. And the ideas of putting off certain skills. I would like to see more evidence beyond anecdote and extrapolation here.
I am not saying I would not agree with these points but I think there are some things that need to be established before I would agree with them.
05-31-2004 08:50 PM
I think my (false opposition) paragraph was still appropriate to the context.
I can send out an email to some of my friends if you like. However they are shy and I don't think they would come even on an all behaviorist site. I will give it a shot anyway.
I also dislike the way the students I work with are assessed (in terms of diagnostics). I have been told (elsewhere) that I am over critical of diagnostic procedures in general. That may be true, so I will keep quite until I learn more about them.
I wish I could find the site, but somewhere on the net there is a site that talks about Dr. Greenspan's statement that autism is an error of reification. He doesn't seem to me to have any problems doing this despite his medical degree.
I am very much interested in hearing about the bullying stories.
05-31-2004 08:25 PM
You could be like me an Pooh, give him (Attwood) a hard stare.
oddizm - practiced hard stares for a long time and has perfected them
05-31-2004 07:53 PM
Attwood charges ten grand!!?
But I like Attwood!! People I like can't just turn into greedy capitalists; it's not fair!!!
Next time I see him(or a photo of him. Well, mainly a photo of him; I've never actually met him before), I'm going to give him a piece of my mind. I've actually given so many people so many pieces of my mind that it's suprising there is any left.
Dave, I'll say it again: POO! What's happening is poo.
David Andrews AppEdPsych 619
05-31-2004 01:58 PM
05-31-2004 12:39 AM
I'm sorry to hear about your wife wanting out. That's never a nice thing.
David Andrews AppEdPsych 617
05-31-2004 12:15 AM
>We'll split the day and the fee and maybe he can teach us how to have friends.
Maybe someone could teach my now ex-wife how to have a husband?
She wants out.
Deleted by topic administrator [...]
05-30-2004 11:34 PM
"i" after "slash" except before "carat". (well I guess you need the carat)
I had to go look online to see who Gutstein is, I have his book...someone gave it to me.
He makes the point that you can't buy friends for your Asperger's kids. (it costs 200 dollars per person to hear him speak)
But we know that you can buy Dr. Gutstein's interest in your kid for a day, if you can afford the $4000.
Michelle, how about if you and I go in on a day with Gutstein. We'll split the day and the fee and maybe he can teach us how to have friends. Maybe Ralph would like to go in with us. I think I could benefit from a third of a day of help. Ralph might need more....
Deleted by topic administrator [...]
Michelle Dawson 613
05-30-2004 09:58 PM
Edited by author 05-30-2004 10:20 PM
"Can't you do something about your employee?"
I *totally* flunked Ralph's "dress and deportment" course.
Aha, I just saw oddizm's latest bowling in while I tried to figure out how everyone else is getting italics. (I did it wrong; how on earth are you guys doing it?)
That was me, with my non-compliant deportment, overhearing Steve Gutstein (Mr. RDI) at IMFAR telling some other people that he charged $4,000 a day for his services. This is just a bit less than Tony Attwood ($10,000 for two days). Hope does not come cheap in the autism world. I don't think Dr Gutstein's rates are a secret. If they were, he would not have been speaking so loudly I could not see much less concentrate on the poster I was studying.
05-30-2004 09:47 PM
A certain person (not me) who attended the IMFAR conference heard a researcher (male) talking about his rates, he only charged a few thousand a day to deal with autistic kids...can't remember how much it was exactly.
With money like that around, you know there had to be some good jewelry, too. A few Rolex watches...
Autistics are gold mines, I tell you!
Camille - leave my jewelry alone, it's a stim toy
Michelle Dawson 611
05-30-2004 09:46 PM
Edited by author 05-30-2004 09:47 PM
This is for oddizm and her offspring, also for John as an example of doing ethics out loud. Notice the balancing of interests in a situation where there are big discrepancies between the rights and power of groups:
Here is brief excerpt. Dick Sobsey is talking to the same Senate standing committee which five year later applauded the view that autism is worse than cancer because for goodness sake we keep right on living:
'Let us look at equality arguments for people with disabilities for a moment. We can identify suicide as a problem in every other segment of the population; and we react. We identify a suicide problem with our young people, and we create prevention programs. We identify a suicide problem in our native population, and we create prevention programs. The disabled is the only group to whom we are saying, "How can we help you commit suicide?"'
Ralph Smith 610
Can't you do something about your employee?
Are you sure? Look what happened the first time I did something about her...
Get her to wear dresses and jewelry so that she can fit in at the conferences?
I'm willing to collect jewelery at conferences, then we wouldn't have to worry about the difference - and I could leave early.
If you bought a bag of m&ms I bet your could improve her eye contact...
What's the resale value of m&ms? If I bought wholesale I bet I could make a killing at the conferences...
I mean, that reminds of DKM's "m&m haiku" (*much* better than eye contact):
Full of chocolates,
left like breadcrumbs to follow,
but whose home is this?
05-30-2004 08:42 PM
Edited by author 05-30-2004 08:44 PM
Can't you do something about your employee? Get her to wear dresses and jewelry so that she can fit in at the conferences? If you bought a bag of m&ms I bet your could improve her eye contact...
Recently, I have chosen to make less eye contact in situations where I have told people, "I don't make eye contact in a normal way." It's fun. I can just keep looking off into space and talking and not interrupt myself with checking for feedback. Of course, one must check for feedback in some situations, and I wouldn't do this with people I hadn't warned...since I CAN make eye contact, somewhat normally.
But back to the topic...which is not about Ralph...
ethics. I have a great book checked out from the Library
"American Eugenics" another good one is "The Nazi Connection", both show the US as being the original source for much of eugenical thinking.
Did you know that is is scientifically proven that some races (and certainly the feeble minded) have deficient germplasm. I never worried about germplasm before, but I know I should have. If I had been told about my deficient germplasm, which is obvious from several points of view, I would have had myself sterilized, or just shot.
But now I have produced 2 children, one a male who is the offspring of parents, both with seriously deficient germplasm, and he's a big gorgeous thing with green eyes and beautiful skin (very tall and muscular) who is bound to try to breed some children of his own eventually. Will the horrors never cease? My other child is a burden on society and surely has very little germplasm at all. Xe uses a wheelchair and has a substandard IQ, does complex whole body movement stereotypies in public...draws an SSI check. The horrors or xyr existence just are unspeakable.
quotes from _American Eugenics_
"quick-fix individual solutions to basal inequities" by basal inequities she means "societal" inequities. It's easier to focus on the elimation of a handful of people from the breeding stock than to eliminate the social set up that allows massive poverty.
"Writing on Europe between the two world wars, George Mosse has suggested that racism is a visually centered ideology-stereotyping physical and mental characteristics of outsiders and insisting on recognizable, undeniable, immutable differences between "inferior" and "superior" peoples.1 American eugenicists, armed with charts, photographs, and even human skulls, were there to provide the visual and mathematical support that rendered racism scientifically valid and politically viable. As national and ethnic and racial identities merged in public and political discourse, eugenic rhetoric acted as court empiricist. Justifying, sustaining, and often initiating anti-immigrant attacks in the name of 'bettering and protecting" the white race."
And TODAY we have scientists, and behaviorists, entirely rational, unemotional, with their charts and measuring lines, statistics and inferences, who make judgements on what is "normal" and what is "right" behavior based on their preconceived notions of what is beneficial. And they implement them in the name of bettering and protecting the NT society.
O, in the name of bettering and protecting Autism. Which is like sterilizing all the dark skinned people on the earth in the name of bettering and protecting dark skinned people.
oddizm - one autistic who has had some bad behavioral patterns unchecked
Ralph Smith 608
05-30-2004 05:26 PM
Oh sure: 'boxcars on beams of light' and suddenly I'm "boss". :P
Michelle Dawson 607
05-30-2004 04:06 PM
Also forgot the false opposition problem. There's more than one in here,
"We may likewise ask what is necessary for an autistic child to learn or do. Lovaas and others worked on this quite extensively. Back in the 60s such a drastic treatment may have seemed necessary, Lovaas and Maurice offer perspectives on why they believe certain behaviors should be suppressed and others increased. Often the reason seems to be the child in question will lead a horrific life. When I think of some of the stories I have heard of institutionalized life of the 60s and 70s (and even now) this is understandable."
Michelle Dawson 606
05-30-2004 03:59 PM
John, I forgot to ask if you're going to supply us with a temporary replacement resident behaviourist. Not that you can be replaced.
Michelle Dawson 605
05-30-2004 03:39 PM
Edited by author 05-30-2004 03:44 PM
You want a general guideline of "ethical" in autism. I tried to show that this can't be addressed in the abstract. You yourself would recognize if you were being treated unethically. This may not result in your ability to define ethical in a way that is precise and can't be challenged and applies across the board.
I'm very bad at discussing anything that verges into abstraction (ask my boss, Ralph). I'll try anyway. I did do a ton of reading about ethics in other fields before I wrote the ABA article. The article was also reviewed by an ethics person in another field.
In autism treatment, there are ethics questions at many levels. In my response to you, I showed that these questions had not been asked. In ethics, you learn from other situations that may resemble your own. In autism, it's fair to ask why the ethics questions were never asked. I found that they weren't asked because autistic people were not considered to have worth, rights, or possibilities as ourselves. Only when we "improved" and came to resemble non-autistics to some extent were we described as human.
An ethical guideline here is that when autistics are not seen as human beings with human rights, we cannot be researched or helped ethically. Step one is to see us as being as fully human as you are, and as having the same kind of human integrity. I think John Fryer nailed this. Failing to see our differences, however difficult, as integral and valuable not only hurts us it hurts you. It diminishes you and robs you, and by extrapolation via universal ABA society as a whole, of our "honest humanity".
Now that we're human, the next guideline results from seeing how other humans similarly situated are treated. So we learn from the FBP, and from the suicide of Alan Turing, and from lobotomies and forced sterilization, and we learn from Canada's native residential schools. You're going to figure out that people make terrible mistakes in assessing people who are significantly different from themselves, no matter their intentions or expertise. You learn also that the worst long-term outcomes belong to those who are excluded from the discussion of what to do about themselves. The next guideline is that if you are going to run an ABA program for autistic kids, you have to have autistic people involved in the program decision-making. I think we agree here.
By the way, I think the way your kids are assessed for the convenience of the school system, or whatever, is unethical. They become the means to someone else's ends, and that's wrong in pretty much every situation.
The next guideline is accepting that autistics communicate and that your job is to recognize this and respond to it. Failing to recognize this is unethical. It puts autistics in a position occupied by no other humans, including "locked-in" stroke victims.
The next guideline is to observe us accurately. This requires you to read science outside your field which shows differences in basic cognitive processes. This may also require you to accept that some autistic needs may seem outlandish and unreasonable to you. Remember that the feeling here is mutual. I can't *believe* sometimes how much non-autistics need.
The next guideline is to use strengths and abilities first; this might mean putting off social and self-help stuff while autistics develop strengths in specific areas. Once these strengths have been established, then the more difficult (for us) self-care skills (eg) can be approached by us from a position of strength. The best long-term outcomes in autism are not well-rounded people who resemble non-autistics. They are people with great strengths in a few areas, who are obviously unusual and distinctive people. These people will have developed in the "wrong" order, will have found difficult things easy and easy things impossible.
Another guideline is to notice the importance of materials in the wasy autistics learn. We learn explicitly only with great difficulty (I just accidentally found a wonderful example of this, resulting in a disrupted experiment). We learn implicitly in ways unavailable to non-autistics. Failing to recognize this and take advantage of it is not ethical. It is like depriving a blind person of materials she can use to learn.
And so on. I know that the Los Horcones gang stresses explicit learning, another black mark against them. They just fail to see our possibilities totally, since they are not like their own possibilities. That's not ethical.
A bit about aggression. This has sort of been discussed, but not stated outright. A lot of "aggression" in autism represents "last straw" behaviours. You have to ignore a lot of communication and a lot of basic needs (recalling that our needs are not the same as yours) before they happen. This progression won't be obvious to you. I'm guessing, since I'm going with the many descriptions thrown at me. I tend to hear the worst stories. I was told, for example, about a young adult autistic who was now drugged out of his mind. I was told this was necessary because he was totally unreasonable and violent. What does he do? I asked. Well, when someone moved the ash tray, he blew up, I was told.
This is a last straw behaviour. This guy (which could be established, if anyone cared) had no doubt been communicating that he was in difficulty for some time. He had been ignored for a day or more. Then there was this other small thing he had to take. So he blew up. This is wrong behaviour. But it is also wrong to ignore someone who is dependent and who is honestly and persistently expressing a basic need.
I've been in these situations, have witnessed them, and have had them described to me by other autistics. There is responsibility on both sides and this has to be recognized. A behaviour you will finally notice is very likely to be a last straw behaviour. You then have a ton of ethical problems about what the hell to do. Being ethical in this case means recognizing the problem and your role in creating it. You do have control over your own behaviour. In kids, they get to last straw behaviours pretty fast. But some don't and sometimes this is bad.
There is a famous story (I wish I could find it, it is written down somewhere) of an autistic boy who lived for some days with a twisted testicle. This is supposed to be the worst pain available to man, intolerable even for minutes. This boy did not seem to be reacting too much. The interpretation is that autistics don't feel pain. That's wrong. I'm sure this boy expressed his difficulty repeatedly. Perhaps he had learned that if he insisted, he would be punished, or he would get unwelcome attention. He chose to learn to deal with the pain, the other options being either unavailble or even worse.
I've made these decisions myself with quite serious injuries (broken bones, torn ligaments), which I had to work with (and I work physically), since explaining myself was impossible, regardless of my being supposedly verbal.
You can figure out the ethics here yourself. I guess an ethical guideline is to consider that we are alert to what goes on around us (sometimes in real time, sometimes not), and we are often put into situations where we have to make terrible decisions. To be ethical, you must try to give us more possibilities.
I know you can recognize situations when you are given the information. I'm thinking of the boy who was aggressive because he was in pain, who you described. But there are kids who won't be aggressive predictably from pain. They may be in pain for days. They may suddenly be overwhelmed by pain they have previously been coping with, and this will look bizarre to you. Confusion in my case is experienced as physical pain, and while I can explain this, it is considered absurd and ignored.
I've already written quite enough. Except, I don't think Dr Greenspan refuses to acknowledge the existence of autism. He's a medical doctor and he can't mess around like the behaviourists do.
I have some observations re bullying, and also bullying and DS which I'll postpone. Also, I've helped solve one bullying problem in a school, and solved another one. This one took five minutes, and the problem was serious, widespread (more than one hundred people involved) and longstanding. If you want to know, ask.
And I was going to talk about universal design. Another time.
05-29-2004 11:28 PM
Edited by author 05-30-2004 12:52 PM
It is a shame we will probably not have time to take this to completion. Oh well, I will be back in late August and I still have a week before I take off.
The purpose of the library example was to demonstrate the difficulty defining a general guideline of ethical in autism. In this case the difficulty existed because, we assume that the autistic boy had a behavior that served a need. But the behavior caused sensory disruption to the other children. This seems to go beyond just bias. Maybe we could address this in terms of habituation, but it will be a problem until then. Habituation usually does not happen over night. I also said there would many other ways of addressing this situation beyond expecting habituation or suppression.
I have heard the concept of fair be discussed in context of differences previous to participating here. I am by no means prepared to offer any position on what constitutes fair in terms of differences and particularly autism. I have seen some strategies address this and have a happy ending. I have also seen some situations (similar to your student afraid of dog example) where someone has walked away embittered. We have done something wrong in such a situation regardless of whether it is a student with a difference or if it is a student with a typically developing pattern.
I don't mind answering your question on my learning Spanish. I am taking it to fulfill a language requirement at my university. I selected it because I took it in High School as well. I finished my last semester of it a month ago.
I hope I do justice for the folks at Los Horcones. The idea that Los Horcones includes autistics is my statement, not theirs. I do not believe that they have met autistics who are adults and did not grow up in the community (I might be wrong though). They do not believe in the idea that autism is a thing, they would think of their members as persons emitting autistic behaviors. They would call labeling a person with autism as "an error of reification", (to call a process or activity a thing). Or more simply put (to call a cluster of behaviors a disorder). Dr. Greenspan also subscribes to this belief. If I remember correctly the autistics were abandoned in this case.
I have yet to meet a person I universally agree with in the autism field. The only person who comes close is a DTT teacher and she and I disagree quite a bit. I also know that people who I admire or agree with in one respect may completely disappoint me in another regard. I continue to deeply respect the Los Horcones group despite the fact they do not believe in a nature of autism and that they pose for family style photos with Ole Ivar Lovaas.
I am no fan of institutions for any person. I do maintain that self care is an issue, even a very serious one. That however is no justification of institutions.
Amanda's writing should be required reading for all students of behavior science.
Please, explain where I emitted false opposition (I am confused on this).
You wrote "I don't experience ethics and effectiveness as subjective at all. They are only subjective to someone who does not live their consequences and is free to discuss them abstractly."
If so, then we should have no problem defining ethics.
I agree that autistic folks get more than their fair share of bullying. But I would put persons with Downs Syndrome ahead of autistics for bullying.
This is an unusually hard behavior (bullying) to reduce. Discussing differences in an open contributive manner (with same age peers) does not always solve the problem (although I have seen this work in some cases). The behavior of course may have different functions. For a few years in High School (before my DTT days) my friends would sometimes be inappropriate in discussing those with differences. Looking back now, it seemed part of the problem was the fact that this would get me to display some aggressive or angry behaviors (and this likely reinforced them). Extinction seemed to be the key in this specific case.
I do not think we can implement a change without knowing what is ethical in autism. I wrote about some problems when deliberating what is ethical in my last post.
I would not support a program that denied teaching certain skills if I saw repeated evidence that an individual was in danger or if they seemed to suffer (displayed behavior attached to aversive contact). This would be true of any individual and if the individual and if these behaviors were observed in DTT, this might mean taking the person out of DTT. I have not seen this but I believe it could happen.
Michelle Dawson 603
05-29-2004 05:05 PM Edited by author 05-29-2004 05:23 PM
Hi again (again) John,
Some more short comments about Los Horcones. Are they the ones motivating you to learn Spanish (none of my business, of course)?.
And I still don't understand how a community which denies that autistics exist can include autistics. Or that this is good. I'm repeating myself, but there's a contradiction here. Would you applaud a community which claimed that homosexuals did not exist, just heterosexuals with inappropriate homosexual behaviours? Then would you say that this community "includes" homosexuals, who are welcome if and only if they act exactly like heterosexuals? I detect some problems here, but maybe this is over my head?
Which leads to ethics and effectiveness. First, the threat of institutionalization. I wrote about this way back /m21, as in,
"And no autistic, child or adult, belongs in an institution. Many of us have occupied them. And most of us started non-verbal, and some of us still are; and many of us did, or still do, bang our heads and otherwise behave in ways that seem to entitle non-autistics to incarcerate us. Self-care is not an issue on a planet where quadriplegics live independently, that is, outside of institutions."
Also there is no way to improve on what Amanda wrote about institutionalization http://www.autistics.org/library/time.html .
If a list of behaviours all belonging to one adult was described to you by a colleague, you could listen to the list and say, Oh my, that person has to be locked up. That person would be me. More than once people decided I had to be locked up, for my own good, because of (a) my diagnosis, and (b) my appearance.
If ethics exist at all, you have to question the premise on which decisions are made. And you can't discard the humanity of the people about whom the decisions are made. Dr Lovaas did and Dr Maurice did. They had other choices available. So do you. I wrote about false oppositions and was surprised to find you emitting them.
I don't experience ethics and effectiveness as subjective at all. They are only subjective to someone who does not live their consequences and is free to discuss them abstractly.
If you look at the evidence, you'll find that the ethical questions about ABA in autism weren't answered because they weren't asked. In other situations, with other groups, those questions were asked, which resulted in change. Also, other groups were seen as having an interest, so interests could be discussed and balanced. This is a part of doing ethics. In autism this can't happen because we are seen as being doomed, and of having no interest except avoiding this fate.
Equating, to some degree, autistics and criminals is interesting, since many of us have been subject to criminal acts. We are the world's best targets for bullying. We certainly are killed much more often than we kill. There's a big database of murdered autistics.
The message has been in Canada that we are going to be killed unless we get treatment. Like the cancer false equation, this makes any ethical consideration, including anything to do with effectiveness, vanish. But throughout, the responsibility for how we are treated is located in us. That is, not only are we responsible for our own actions, we are responsible for the actions of those who hurt us. Just like we seem to be responsible for our own institutionalization.
I've taken a position that it is impossible to evaluate effectiveness of treatment until autistics are granted basic human rights. This then would mean that ethical consideration would be applied to autistics. I've paid a lot of attention to what you've written, but I see nothing that would make me change this position. We don't know what autistics would do in a world where it is okay to be autistic.
In this world, autistics would be visible in public, just as blind people are, and in various academic, media, political, and professional positions. We could go out and safely be ourselves in school, in public, at work. Anyone committing criminal acts against autistics, or violating our legal rights, would be prosecuted just as if those acts were committed against a non-autistic. Hate speech and hate crimes against autistics would be prosecuted, not applauded and rewarded.
Once we have this world, we can evaluate your program for ethics and effectiveness. In the meantime, as with the FBP, it's really hard to know what you're messing with until it's too late.
I don't see why the issue of consent in ABA in autism can't be dealt with the way it was dealt with by behaviourists criticizing the FBP. The FBP had exactly the same consent problems as exist today in autism-ABA. I'm just repeating myself from my article.
Finally, what if we do learn differently, and what if our intelligence is different? Because there is a lot of evidence for both, some of it provided by behaviourists. I will repeat again that I don't buy the different levels of functioning, and Amanda has written very thoroughly about "regression".
I can add to that the problem of development being defined according to how a non-autistic develops. There's actually quite a lot of "regression" in non-autistic development. An infant loses the abilities to hear all the sounds that make up all languages, and to configure non-human faces, for example, in the course of development. This is okay, because they're normal.
Our development looks different from non-autistic development and it should. Our brains aren't doing the same thing, for instance (this is a very replicated finding). Forcing us into patterns of non-autistic development, if one cares at all about ethics and effectiveness, is as wrong as forcing non-autistics into autistic patterns of development.
Michelle Dawson 602
05-29-2004 12:17 AM
Edited by author 05-29-2004 01:27 AM
Hi again John,
I wrote /m601 (and where would we be if Philip hadn't taught us how to link to messages) before I saw your /m600, which merits a lot of thought on my part.
Right now I see one point that is lacking in your analysis. It is lacking in most autism science and treatment. That's the idea of reciprocity. Autistics are supposed to lack reciprocity in our interactions with others. There is no good evidence for this beyond biases that say if a person is not being like you, then he is not reciprocating.
The autistic is humming in the library not because he is misbehaving but because it is necessary for him to block or organize the noise or the visual chaos made by everyone else (libraries full of people are very noisy/chaotic for an autistic). Is the priority to cater to the needs of the others in the library who don't like the autistic humming? You would then put the autistic in the position where not only is it okay for other people to hurt him with their behaviour, it is wrong for him to defend himself, or to try to have less pain.
I've been in this kind of position, where I needed accommodation that upset other people. They just hated that I was treated differently, even though they were not affected at all, and my accommodation did not cost any money. Still, there was fury. Why? Because I was different.
I had to make an analogy to explain myself (this was a very, very big problem for no reason except intolerance). I can't use the whole analogy here, but what would you do with a blind student who used a guide dog. Some of the other students don't think it's fair, and yet others are scared of dogs. Do you tell the student, sorry, you can't have your dog?
When I was younger I knew kids who hated anyone in wheelchairs, and any apparent accommodations made for them. There is so much that is being overlooked here in the rush to treat/teach the autistic. How do we decide what is unacceptable? Who teaches us?
But more important for me is, are you looking for intolerance and how it affects behaviour? Because intolerance is a reality, and many pretexts will be used to express it.
More on ethics later. Thanks for your thoughts, John.
Michelle Dawson 601
05-28-2004 11:48 PM
Thanks for more fascinating information. Now I'm really curious. By meeting autistics, do you mean that the Los Horcones gang have met autistics who have not been trained in their community from childhood?
If so, are you saying (and I apologize if I got this totally wrong) that this meeting had no effect on their principles about how autistics should be treated (the principles I described in /m595)?
How were the autistics "adopted"? Was this their choice? I would find the word "choice" extremely problematic in this situation. Were these adopted autistics abandoned by their families?
How do you reconcile your admiration for the Los Horcones gang with their great admiration and approval of Dr Lovaas? This does not make sense to me, at all.
Being trapped in a "community" where autistic behaviour is assumed to be inappropriate, even though it is important and essential to the autistic, sounds like a (familiar)nightmare to me. I've yet to hear anyone involved in ABA, no matter what kind of treatment they use (eg, in the FBP, in Dr Lovaas' aversive treatments, in the JRC) claim to be anything but totally concerned for the welfare of the children.
As for challenging Dr Malott, I did challenge the behaviour analysts involved in autism, and I'm afraid the results weren't so good...
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