Translated from Babel fish:

“Unfortunately, the autism is a plague, and its consequences are devastator.”

Oh wow…

(Blatant appeal to ridicule)

Can I get a super-sized appeal to emotion, I will want the false equation to be super-sized as well of course….And I’ll have a large conclusion..but hold the premises….And a side of slippery slope…And I would like that to go…

Edited by author 03-03-2006 01:53 AM
John, I admit that your comments on the behaviourist plaguemongers made me laugh out loud. That's regardless of most of my neurons having collapsed from exhaustion (I imagine an MRI slide, big empty skull, heap of fine dust visible in a corner somewhere...). I'm wearily patting myself on the back, again, for having found such an appropriate (so to speak) title for TMoB. As I think I wrote before, I did not at the time consider that I was in fact making a prediction.

I'll try to argue with you re your latest here when I get some neurons back up and running.

Philip, the good thing about the articles about vivisection is that autistics were not drawn into the argument as examples of not-humans who are not (presumably, but there is a lot of evidence to the contrary) experimented on. But the bogus use of animal models in autism might well be dangerous to autistics, not just via Mady Hornig (and her co-author, Dan Olmsted) but via very important researchers like Tom Insel who largely work with animal models but who claim to be expert in autism.

I would like to see one credible argument for the use of animal models in autism that takes into account what is known about autism, versus the needs and beliefs of various researchers. Maybe Camille can ask the rat model professor. Maybe if autistics could grow little rat ears and some long whiskers and a ratty tail then we would be anthropomorphized and would be better off than we are now--with the opposite of anthropomorphism, which is dehumanization.

Oh, and the good news is that The Voyage is now included in the Autism Hub http://www.autism-hub.co.uk/

Hi Michelle,

I have been trying to plant seeds of doubt as to the ability of anyone to create a rat model of autism in the mind of the rat model professor. He says he will read "Not Even Wrong." I told him that you, Michelle, said that autistics jumped around developmentally and didn't follow the Piagetian model necessarily. I gave him links to the stuff from the AAAS meeting so he knows from that and from conversations that he and I have had, who you are.

Today he talked about pheromones. I couldn't work autism into the pheromone discussion so I didn't comment much in class, except at the end when he gave an example of the press deliberately twisting a story and ignoring facts from the mouths of experts in order to craft an appealing but false story about science.

This professor has disproved various earlier studies that tried to say that women's menstrual cycles could synchronize, by way of some putative pheromones. He said that while humans have a vomeronasal organ it isn't hooked up to the brain, it's a vestige or like a vestige. So we are missing part of the "pheromone" system, the reciever. Mice use lots of pheromones, and rats do a little, but humans and monkeys and apes seem not too.

Anyway, there was this really bad study that supposedly showed that a product called "athena" or soemthing like that could stir up interest in the opposite sex if you put it on... this was just recent. A producer from ABC (American) called him and others did, too, apparently because he's like "Mr. Pheromone expert" and he told them the glaring flaw he had found in the data of this paper. It's a massive flaw, you could drive a truck through this flaw....

He said the producers were quite knowledgable about the whole science behind pheromones, they knew what he was saying. In December they ran a story saying that the perfume stuff (which is very expensive) worked according to the study.

The stuff didn't work at all. Not a bit. Their data showed it didn't. But the data had been massaged to sort of look like it did, if you didn't know what you were looking at as far as the stats test they used.

So, I laughed when he said he couldn't imagine how it got published and asked him what journal it was published in. I don't know pheromones, but I know the concept of garbage journals and better journals.

There was discussion of mouse models of autism in Dr. Gottesman's talk at the AAAS meeting, but I don't know what his point about them was. I told the rat model professor about Dr. Gottesman and suggested he might contact him.

In other news I sent another scolding email to Dr. Hendren and Dr. Amaral regarding the B12 study going on at the MIND and the replication of the Hornig mouse study going on at UCD somewhere. I basically asked for some simple answers and told them that I was going to go to the IRB or chancellor for research if I didn't get some simple answers to straightforward questions regarding ethics. I had something like chest pain/back pain for a few hours after writing the message. I was quite upset. So if they don't answer me, I will go over their heads, and hopefully get some action or some answers.

Edited by author 03-03-2006 03:25 AM
Camille, I had a lovely image of you planting seeds of doubt (I imagined rather large ones, like pumpkin seeds, as well as some pretty garden implements) in your rat model professor's brain.

I've just sent off (with lots of help from my parents for the French version) my response to Le Devoir. Even if this is futile, which seems likely, not responding is worse.

I didn't know about the Hornig replication attempt at UCD. Replicate what?

The pheromone stuff is fascinating. Good journals sometimes publish really bad studies too, and can issue very misleading press releases. I mostly know this by how journals and authors make big declarations about how their research will find the cause/cure/whatever for autism, when their research has little-to-nothing to do with autism at all. The classic case was the u-opioid mice study (what is it with mice), published in Science, where there were those big press releases about how this is related to autism, autism being an attachment disorder. This is the one Dr Gernsbacher and many others (including Dr Rogers of the MIND) responded to. Good thing, seeing as there is no empirical evidence that autism is an attachment disorder (contrary to the poor observations of behaviour analysts and others). And that particular mouse study, published in one of the most credible journals on the planet, had nothing to do with autism. But the authors mentioned autism anyway, and that was how they sold their study.

[staggers off in the direction of the sunrise]

Edited by author 03-03-2006 05:45 AM
Hi Michelle,

Because the "autism-is-a-plague" response published in Le Devoir attacks you personally, they have a moral obligation to publish your response.

The professorial authors of the "autism-is-a-plague" response write that autistics must be asked their opinion on interventions of which they are the object. But all autistics must be asked, not only an "atypical" autistic. In order to obtain the opinion of the others it will first be necessary for them to learn to communicate.

Presumably they must be taught to communicate by ABA/IBI, without which, according to the professors, they will be incapable of developing their potential to lead the autonomous and fulfilling life to which we all aspire, autistic or not.

An imaginary analogy to the arguments and demonstrations regarding animal experiments and animal rights would be if they were in reality an Autistic Liberation Front (ALF), which threatened and used violence against organisations which aim to make us non-autistic, such as NAAR/Autism peaks, CAN, all providers of ABA/IBI, and against everyone involved with them in any way; and if supporters of those organisations demonstrated in favour of "curing" or "recovering" us, and represented their opponents as the violent extremists of the ALF.

I've just read _Through the Glass Wall_ by Howard Buten.

If anyone wants information about autism, I would not recommend this book to them.

If anyone wants a case study of the level of arrogance that professionals in this field can fall into, the warped ways in which they can characterize both their "patients" and themselves to justify their actions toward their "patients", the warped "compassion", the warped "empathy", the warped everything, all dressed up nice and pretty to somehow convey the impression to the average reader that the author of the book is special and compassionate and wonderful.... that this book can offer, at least if you know how to see through it.

The inability to see thorugh it is what worries me. The way in which he characterizes autism, characterizes the inmates of his institution, characterizes everything in the book... it's all very neat and pretty and well laid out and very very deeply wrong and harmful.

The thing I'm finding myself hard put to describe is how the incredible lack of true empathy on the part of this professional can be put into words, how the "deeply wrong" can be conveyed, to people who don't know firsthand the discrepancies between what he said and what is happening, and don't know how to read between the lines and see what is really happening in this book. I don't know how to *say* that to someone who doesn't *know* it already.

Re: Planting seeds of doubt, etc.

A scientist, I have his name but have forgotten it, is replicating the chronic over the baby mice with injections of thimerosal study. The one where they did it to a bunch of mice and none of them became "autistic" by Hornig's own standards, but later started to chew on their tails, etc, which was supposed to be the equivalent of autistic self-injury.

But that description of self-injury never made it into the peer reviewed paper. It was just thrown around for the CDC and others to see the gorey pictures of what happens to mice when they go autisitc, "all in the room gasped with the recognition that this was just like their autistic children" according to David Kirby's book.

I think Hornig knew that if she put it in the paper something wouldn't ring true. Those mice got peripheral nerve pain from the mercury, chewing on feet and tails is the response that mice have to peripheral nerve pain. This is the most likely explanation, and scientists would most likely catch it, but lay people and those without a paper in front of them would be less likely to catch it.

Sooooo.... one of the things that made me so mad was that I had written an email to the professor who is replicating this telling him that his experiment was bound to cause peripheral neuraesthesia in the mice so he would know, or so he would know that I know about it if it's already happened. I told him that the experiment would be mocked as the Hornig study is mocked if he succeeded in publishing it. I think I told him that... I said it to Amaral some time ago, I remember that.

Anyway, it made me angry that they were abusing the mice for no good reason and might get away with hiding the nerve damage part if they published it.

I have other complaints about the B12 study that I haven't brought up, the IRB should know about them, though.

Hi Philip,

I have some problems with Le Devoir printing an article in which I am diagnosed, and in which it is said (in quite clear words) that I advocate neglect of children, but I'm not sure they have any obligation (devoir?) to allow me to reply.

I have even more problems with Le Devoir accepting to publish an article in which the existence of autistic people is called a plague.

There is nothing much I can do about this: both the Quebec College of Physicians and the Quebec Human Rights Commission have ruled that autistic people are in fact a plague, and that distributing this information via the media or other means is not only appropriate, it is actually necessary, and surely helpful, and perhaps autistics should be grateful, etc.

On the other hand, the Quebec Order of Psychologists did take measures against my own psychologist when she provided my employer with an entirely and relentlessly negative presentation about autism. She did not, however, use the word "plague" to describe us. M. Giroux is a psychologist. I wonder if the QOP would be concerned about his diagnosing me in public, without having met me, and about his published insistence that the existence of autistics is a plague, etc.

There is the irony that M Giroux and his co-author had read, in the article about me that they attack, that I had at some point successfully prosecuted a psychologist (who now works for an ABA service provider) for conflict of interest, but also for providing this unscientific and catastrophic view of autism in her guise as "expert". I hate dealing with the QOP, but I wonder where their limits are.

Michelle,

I just realized that you were being sarcastic when you said, "replicate what?"

You were being sarcastic, right?

sigh.

Hi Camille, I was being bewildered. I couldn't locate anything in Dr Hornig's study that would make any scientist say "gee, I want to replicate that".

But your response shows the problems of scientists whose understanding of autism is selective or partial or otherwise cliché-based assessing research claiming to be relevant to autism. Result: more animals get experimented on and hurt and killed, at the same time that it becomes more likely that stupid papers about autistics are published, publicized, and acted on (e.g., the Hornig/Olmsted "Rain Mouse gets Gold Salts" sequel).

I can't read Burbacher's "Sacrifice Schedule" of 41 monkeys without really needing to vomit.

Knowing that there are scientists out there who look at this stuff and not only do not spot the vast ethical issues (never mind the crappy science) and say "I want to do that too" makes me ashamed to be in the field of autism research, in any way, shape, or form. Knowing that there is a highlighted animal model session at IMFAR this year has the same effect.

Edited by author 03-04-2006 03:22 AM
Spot-the-biased-sample dept. From FEAT BC http://www.featbc.org/cgi-local/forum/discus.cgi general topics, see:

----------------------------------------------------------- --------------

   By Sabrina Freeman (Freeman) on Thursday, March 2, 2006 - 8:57 pm:
For the FEATBC mothers who would like a chance to vent, read on!

Dear FEAT BC Members,

You are invited, on behalf of Dr. Cory L. Pedersen, to participate in a study on stress in mothers of children with autism. This study is very important to families of children with autism. By doing research in this area we hope to better understand the stress that parents of children with autism may feel, help normalize the stressful experiences that a parent may face, and provide suggests for interventions that may assist parents with managing their stress. Your participation would be an important contribution to research in this area and will help other mothers like yourself. If you agree to be part of this study, you will only be required to participate in a one-time telephone interview that will be scheduled at time convenient to you. Your telephone interview will last no more than one hour, during which time you will be asked questions about your child's behaviors and your own stress levels.

----------------------------------------------------------- --------------

I can just see the researchers (the student researcher is described as an "experienced behaviour intervener") dutifully and diligently reporting the FEAT-generated horrors of having an autistic child, the unbearable stress of not being able to have that "puppy in the window" (thanks, Dr Freeman), i.e., the promised (by Lovaas) "recovered" normal child everyone wants, versus that "living nightmare" (thanks, Dr Freeman) autistic child who of course no one wants.

I can just about guarantee that there will be no examination of the stress levels experienced by autistic kids due to the behaviour of their ABA parents (e.g., the post-Auton Dr Freeman promising that all these autistic kids would be in foster homes within 6 months, oh, and some might be killed too).

Edited by author 03-04-2006 02:24 PM
'Reaching the Young Autistic Child - Reclaiming Non-Autistic Potential Through Communicative Strategies and Games' by Sibylle Janert, London, Free Association (2000) is a collection of ideas, activities and games to enable the autistic child to enter the "real world". It is based on the assumption "that in any human being, including the most severely autistic child, there will be *some* healthy development i.e. non-autistic, potential for human contact and communication." (Taken from the blurb on the back cover). So autistic human contact and communication is unhealthy.
There is a description of the book here - http://www.fabooks.com/book.php?id=144.

In the Introduction Ms. Janert writes that the autistic child does not want to communicate, to know about other people and his surroundings, to co-operate. He does not engage in pretend play like other children, but has "an often intense interest in objects".

Because he is unable "to see meaning and to make sense of what happens in the world around him" (how does she know?) "the autistic child clings to routines and insists that things must always be the same."

Autistic children have no desire to share how they feel or think about their experiences, and they do not have much, if any, interest in using words and language for creative communicative use.

Ms. Janert uses the concept of "reclaiming" - the development and support of "any healthy developmental potential" in the autistic child - "while at the same time trying to discourage anti-developmental behaviours and autistic anti-mental attitudes". Again non-autistic is healthy, autistic is unhealthy. The term "reclamation" was coined by Anne Alvarez, a child psychologist, as the attempt to claim, or reclaim, the autistic child "as a fellow human being with all the human potential that belongs to being human."

In the chapter on communication by the autistic child, Ms. Janert states that "Before speech can develop, the child must have become a good communicator without words. Without being able to communicate, words have no meaning." Autistic children do not use their imagination in their play, many do not speak, and some do not use words at all. This is because they do not use symbols, without which there can be neither play nor language.

Writing about autistic children and books, she conjectures that because autistic children have difficulty with 'meaning' they "may be unable to make sense of pictures and what they depict, and just see patterns of colours and shapes." They do not read books or look at the pictures, but - as one autistic boy she decribes did - bite them, particularly the spines. Other autistic children flick through books at rapid speed.

According to one chapter heading autistic behaviours are addictive.

Janert writes that autistic children are often very good at one particular cognitive skill, such as doing jigsaws. But it seems from a close observation of the autistic child´s eye and body movements that he uses the outside shape of each piece, regardless of colour or picture clues, to guide him in making the picture. "In fact, he may have no awareness of the *meaning* of the emerging picture."

Sibylle Janert is a psychologist who when the book was published had over ten years experience of working with autistic children and their families. Her article "Is there a Quaker Approach to Autism?" was published in Quaker Monthly, June 2004, and which I reviewed here on 24th May 2004 - http://www.sentex.net/~nexus23/551-600.html#562. I wrote a reply to the editor of Quaker Monthly (see /m80), which was published in the December 2004 issue.

Edited by author 03-05-2006 02:33 AM
The description of Sibylle Janert's book (at the link Philip gives) starts with, "The sense of helplessness in parents when faced with their child's unresponsiveness is often overwhelming and needs addressing in a practical way."

This reminds me of the assumption that autism is an attachment disorder, as was assumed by many people including Dr Lovaas back when and some more recent behaviourists (Bijou & Ghezzi, 1999), as well as asserted in that irrelevant-to-autism u-opioid mouse study (Moles et al, 2004). But in empirical sudies, no evidence was found to support this notion.

Likewise, if someone bothers to study little autistic kids, as did Keen (2005), they will find that it's the parents who are unresponsive. Autistic kids ("non-verbal") try to communicate, fail, try to "repair" this communication, etc, while being ignored by their "helpless" (according to Ms Janert) parents.

I would no more want to encounter Ms Janert than Howard Buten (see http://ballastexistenz.blogspot.com/2006/0...ired-by-howard.html ). But you could find some aspects of either of their renditions of autism hovering around a lot of current, respected research groups and major hypotheses.

Nor would I want to encounter Dr Gutstein (who makes great claims to being respected), see http://nbc15.madison.com/news/headlines/2407501.html . He is among the hordes of traveling autism treatment salespeople. Here's what he's selling:

"6 year old Graham looks and sounds like a normal kid. That is the result of a lot of work by his parents."

Amazing, just work hard enough and your devastating autistic child will look and sound like the normal kid you wanted. Or else.

Dr Gutstein makes it clear he will not tolerate our shabby rotten autistic brains--no way, not when he can give us lovely sparkling normal brains. And that must be why Dr Gutstein lies about a major researcher supporting his work (see slide 4 here http://www.rdiconnect.com/download/rdifile...-05_files/frame.htm )--because it's so important for him to fix our brains. In fact I only checked one of the researchers (no, this researcher responded, our research group does not endorse RDI or Dr Gutstein, nor will we be collaborating with him).

Dr Gutstein (who sits on the advisory board of the vaccine/autism National Autism Association, and who presents alongside the DAN gang at their conferences) has also self-published another book of anecdotes, about how us autistics just "slip away" when no one is looking (sometimes even before our parents can say goodbye), and how he, Dr Gutstein, can snap us back and have us dancing to his happy tune. See http://www.rdiconnect.com/resources/viewResource.asp?pid=183

Edited by author 03-05-2006 04:03 AM
Hi John,

Briefly back to /m3570 , and your commending and recommending Dr Malott. Consider the context. You've just put a ton of work into writing about some of the history of the use of aversives by behaviour analysts, in their efforts to "help" autistics. Serious ethical issues emerge from this history. Whereupon in your comments you recommend a guy whose ethics, whatever they look like elsewhere, disappear in the vicinity of autism, never mind that he has written that the problem with the FBP is that Dr Lovaas gave up too easily.

I will always (I'm afraid I might be incurable if not ineducable in this respect) assess the work and ethics of major figures in various fields according to how their standards (and their fields) hold up around autistic people. How autism gets worked into various hypotheses, theories, treatments, frameworks, whatever, is informative if not enlightening about their validity. The problems with evolutionary psychology per Dr Pinker snap into focus when he assigns autistics to robot and chimpanzee status (to use a really obvious example).

Re /m3575 , well, what a crushing disappointment re JABA. I really had my hopes up high.

You did challenge, I think, the notion that logic can produce utter nonsense (and even dangerous nonsense). That was a general statement on my part, to show why logic is inadequate, and can be misleading (or harmful). Pursuing a purely logical argument regardless of content can be a serious error of accuracy or ethics. I also generally disagree that you provided sufficient evidence that whereas one of the entities you mentioned is predominated by quackery and alt-med, the other is not.

You wrote: "pragmatics alone are not enough to me to establish merit". I didn't mention pragmatics; I did mention "evidence".

I don't think that "typically" signals a weak induction. Also, I disagree that you can typically judge a person's behaviour (good or bad) by their circumstances (whether or not they have been punished).

http://www.nationalautismassociation.org/NAA_PSA.mov

For the "OK that was creepy file". Was it directed by Tim Burton? I hope not.

Where do they get the money to make a video like that? They are always whining about not having enough money for research, but they can make a video like that? It's not the kind of thing that BC is doing with his webcam on the bartholomewcubbins blog. It had to cost some money for the studio and costume and lighting, even if the cameraman et al were volunteers.

My daughter the Tim Burton fan & I just watched, her comment:

""hopelessness?" ew... creepy"