A Touch of Alyricism

Very Sad News

2009-04-21T22:30:00.000-07:00

Not many of you may be aware, but Alyric, our wife and mother, has been bravely battling cancer for the last year.

It is with a lot of sadness that we must tell you that she passed away last Saturday. She was an incredibly courageous woman, and whether or not you agreed with her, she always fought for what she thought was right. She always fought for the betterment of people, and not the detriment.

More than that, she was a woman who deeply touched those around her everywhere she went.

And she was the most wonderful wife and mother that anyone could have asked for.

We shall leave the blog existing as it stands as a memory to the hard work and dedication Alyric put in for a cause she truly believed in. Thank you to all those who cared for her.

- Clomle44 (alyric's daughter) and Alyric's Husband.

IACC Strategic Plan and Environment

2009-03-13T14:41:00.000-07:00

The Interagency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research has now been published. It’s a very broad reaching document which is good for a strategic plan. Characteristic of the document is the unfinished nature of the research goals. That is also good in a strategic plan. In all events, the specific goals will be dictated by discussions of a different purpose and much greater depth.

The IACC leans somewhat heavily on the Autism and the Environment: Challenges and Opportunities for Research, Workshop Proceedings 2008, Institute of Medicine of the National Academies for their environmental goals. Inexplicably they also manage to mischaracterise the results and purpose of the workshop. The IOM workshop made no recommendations. What they tried to do was tackle the ‘environmental’ angle with the broadest brush possible and with anyone who could have a stake in the issue. The range of research possibilities discussed was enormous. Those are loosely collected together in Appendix A. These workshop proceedings are definitely worth a read just to get a feel for the size of the problem and some of the ways that research is developing.

The IOM invited many parent organisations to participate, giving the lead to the three prominent anti-vaccination organisations, the National Autism Association, Safeminds and Generation Rescue. So the usual players were represented; Sallie Bernard, Mark Blaxill, Kelli Ann Davis, Lynn Redwood, Robert Krakow. Though there were several representatives of Autism Speaks, the perspective of the parent ‘advocates’ was given by Laura Bono of NAA. Now the IOM workshop organisers bent over backwards with this crew. Not once did they object to the silliest statement or the most specious argument and Laura Bono’s perspective had plenty of both. A brief summary of her points is as follows:

$ “Declare autism a national health emergency under the Public Health Act and treat it with urgency.”. The one thing anti-vaxxers do well is Science by fiat and/or assertion. There is no evidence for an epidemic, but that counts for little against the need for autism to be a medical condition that is by definition not genetic and treatable (by their methods).

$ “Autism is both economically and emotionally devastating to the children and their families. Many families are on the brink of bankruptcy as they struggle to get insurance and the medical attention their children need. Murder/suicides of parents and their autistic children are on the rise.” Apart from bankruptcy chasing expensive and unproven CAM therapies, I doubt there’s a grain of truth in the rest of it.

$ Laura then chides the CDC for ‘credibility ‘problems in failing to declare an epidemic then quotes Julie Geberding, Director CDC’s explanation for it: “Our estimates are becoming better and more consistent, though we can’t tell yet if there is a true increase in ASDs [autism spectrum disorders] or if the changes are the result of our better studies.” This is then called a denial which is unacceptable because it thwarts research into environmental factors. Why should it?

$ “Autism is an environmentally triggered problem. If it is environmental, then it is treatable and preventable. It is not hopeless and lifelong. It is hopeful, with a possible cure.” Again it’s science by assertion but also a really good example of wishful thinking.

$ “Recent clinical investigations have identified numerous comorbid disease states in children with autism. These include immune system abnormalities; inflammatory bowel disease; oxidative stress; disordered urine and serum chemistries, including elevated porphyrins; methylation disturbances; increased body burdens of metals, including mercury and lead; chronic viral, fungal, and bacterial infections; and microglial activation in the brain.” This is certainly what is treated biomedically and very often all these comorbidities occur inside the one child reading treatment accounts, which isn’t a good fit for the healthy looking shiny haired children posing on the back cover of Laura’s presentation.

$ “The research paradigm needs to shift from autistic children are genetically defective to autistic children are sick and treatable. We should only grant money to genetic vulnerability and epidemiology studies that have a clear environmental hypothesis.” That’s clear enough. If you are genetically defective you can’t be treated or so this false dichotomy is saying. That narrow thinking carries on to dictating a narrow funding rationale based on no evidence whatsoever.

$ “There is a growing body of evidence implicating vaccine overload, mercury and aluminum from vaccines. Thousands of parents agree with this research. They watch their children regress after being vaccinated.” Again this is science by anecdote. There is no evidence corroborated by carefully documented case histories, which is surprising when these anti-vaxxers point to this as a major plank in their rationale.

$ “Regardless of controversy surrounding any theory, we must research and produce successful antioxidant, methylation, and blood-brain barrier chelation treatments, as well as immune system, detoxification, and inflammation interventions.” Note the anti-science attitude reflected in the call to produce the remedy well ahead of any good theoretical grounds for doing so. Also note that it is rather heavily implied that chelation is not effective given the lack of a blood-brain barrier chelation treatment. So why do they continue doing it?

$ “The guiding principles should be to pursue research and treatments that will impact the most lives as quickly as possible and follow clues provided by treatments currently working in children. Such an agenda would best be served by a translational research protocol where clinicians who care for children with autism advise research into the most promising areas of intervention.” So the guiding lights are to be a bunch of DAN doctors directing the agenda.

$ “It is imperative that the working group proceed with urgency and follow the truth wherever it leads.” Yes but it’s only if it fits our definition of truth.
Well no one laughed not even when Laura specifically exhorted the workshop to use provoked urine samples for heavy metals testing, a species of fraud. But because no one laughed or raised the least protest at the amount of anti-science on display, the advocacy groups became essentially token participants and not taken seriously. They could have taken advantage of this phenomenal opportunity to look at the research currently on offer particularly the prospective style initiatives where a specific group is tracked basically before anything happens. Not all of them will cover environmental factors but some include them. The National Children’s Study certainly does. The US is also involved in the Norwegian ABC study, which tracks 100,000 women from early pregnancy taking all kinds of samples on the way. This includes addressing things like vaccine history as they arise. This is exciting research with the best possible chance for turning up meaningful data including valid biomarkers for autism.

So what, if any of their wish list made it into the IACC strategic plan? In very general terms, some will but not the narrow concerns of NAA and associated organisations. As the plan states:

“A clear need exists to advance understanding of the many phenotypes of ASD, including studies that link genotype to phenotype, investigations of natural and treated history, analyses of genetic interaction with environmental exposures, and studies of co-occurring medical conditions. “

There is a need to look with a very broad brush because we don’t know enough at present to narrow the exploratory field prematurely.

Katie Wright:: Autism Speak's Liability

2009-02-22T14:20:00.000-08:00

“While large scale studies have not shown a link between vaccines and autism, there are lingering legitimate questions about the safety of vaccines that must be addressed. “

So said Autism Speaks in response to the Autism Omnibus Proceedings decisions by the Special Masters. Of note, they must have completely ignored the actual decisions to make that statement, as did every anti-vaxxer site masquerading as an autism organisation. In all cases the Special Masters spoke eloquently and in considerable detail about the lack of a credible link between vaccines and the development of autism in the individual child. There was nothing large scale about it, so why did AS put in this regrettable performance? Can they now be aligned with all the other anti-vaxxer sites? It would appear so given the anti-science displayed by Geraldine Dawson in her bid for a more collaborative approach to immunisation questions. Her approach to neuroinflammation and immune dysregulation noted in some ASD folk is at decisive odds to the findings of the experts in front of the Omnibus. She wants to give legitimacy to what amounts to parent pandering by giving undue importance to isolated findings. What is questionable at this stage is the legitimacy of parent pandering under the guise of collaboration. It could be well argued that it’s the parents who are entirely responsible for the current fiasco having decided against all professional advice that vaccines are responsible for their children’s autism. Throwing more money at vaccine safety questions is unlikely to persuade them especially in the oh so likely event that vaccines are exonerated from blame. If it’s not the answer they wanted they will ask for yet more research and where does it all stop?

Autism Speaks shift to the anti-vax agenda got a rather large push from the daughter of the founder who was rather vocal in her disapproval of Allison Tepper Singer. Katie Wright is a fervent anti-vaxxer who believes firmly that her son’s autism developed from vaccines. Autism Speaks founders, Bob and Suzanne Wright’s wish to support their daughter’s beliefs may be more than a little shortsighted if it means the derailing of the agenda of a significant research funder. Note that Allison Tepper Singer resigned over the vaccine research agenda. For her it was ‘we know the world is round’ and it’s time to move to more important questions. Katie Wright is still in the picture and the picture is less than rosy with her in it. It may well be that Katie becomes a liability that Autism Speaks can well do without. There are limits to the scientific veneer Geraldine Dawson can maintain with Katie’s contributions in the background.

When Jenny McCarthy wrote her latest, she included Katie Wright as one of her Mother Warriors. Thematic through the entire book was a lack of consistency in accounts. None were more inconsistent than Katie’s. Here’s her opening line:

“ We tried everything: traditional therapies, ABA, speech, OT, everything. We even tried the heavy pharmaceuticals and we were warned over and over again, not to do the diet, that it was very dangerous.”

Note the monumental absurdity that an exclusion diet is ‘very dangerous’ and no mention at all of the very real dangers of heavy duty pharmaceuticals. This is typical Katie Wright, overly florid emotional outpouring untempered by critical thinking skills. Embarassing it may well be but harmless compared to what she is capable of doing in the way of character assassination, most of it the figment of an overly active imagination. The best example to date is her latest for AoA. This is Katie’s reaction to Nancy Minshew and Paul Offit’s response to the Omnibus decisions. The article however is extremely short with Offit rating two small paragraphs and Minshew one.

Brevity notwithstanding, Katie makes the most of it. Offit and Minshew are introduced as “wealthy vaccine profiteer Dr. Paul Offit and Dr. Nancy ( all autism vaccine research is ‘crappola’) Minshew.” who “held a shockingly angry pity fest. “. Where the latter comes from is anybody’s guess. She carries on with “Even when Offit’s side wins, he is still angry, lashing out at grass roots autism organizations”. Here she names two - AS and NAA interspersed with other material she would like to attribute to Offit including that he’s fuming. Here’s how she puts it:

“It would be nice if autism orgs (AS, NAA) actually advocated for children with autism!” he fumes. “Instead they are anti-vaccine organizations (because demanding safety studies = heresy!)…and it is high time that these orgs stopped deluding people…”

Reading the original article it’s amazing the difference between the quite restrained tones of what Offit actually said and what Katie wished he said. No mention in the original of any organisation by name. Her quote is incomplete and there would have been plenty of room to quote the lot if her inaccurate additions had been omitted. This does not look especially like someone fuming:

"It would be nice if autism advocacy organizations actually advocated for children with autism," Dr. Offit said. "Instead, they are anti-vaccine organizations, and the fact of the matter is vaccines have nothing to do with autism and it's high time that these organizations stopped deluding people into thinking that vaccines do have something to do with autism and started focusing on the real causes of autism,"

Her next contribution is informative:

“Wow, is this guy angry, what a freak! Does it infuriate him that AS provides cash grants to communities in need? Or is Offit angry that AS has undertaken a huge campaign to provide insurance re-imbursement for autistic kids? How awful! Maybe Offit is also infuriated by NAA’ s modest research budget investigating how to help sick autistic children as well as their grants to struggling families is need. That is, obviously, really wrong!”

Offit goes to being an angry freak. But he has not mentioned either organisation or a single word about them. Why then the unsubstantiated vitriol, which continues for another paragraph?

Her next foray is against Nancy Minshew:

“Minshew re-iterates for the millionth time “I hope this begins an end to the death threats and character assassination against scientists!”

This she allies to
:
“Naturally Minshew expresses no sympathy or concern for the long suffering Cedillo family or their daughter Michelle, who is so severely physiologically affected.”

There is the rather large question of why Minshew would see the need in this article in this situation. Curiously, Katie asks “what character assassination?” one paragraph further. I think she has perfectly answered her own question. As for how much the autism community dislikes Nancy Minshew, Katie makes the common mistake of assuming her anti vaccination organisations, which use autism to further their anti-vaccination agenda are more than fringe dwellers of the autism community.

Katie concludes that Minshew and Offit are a couple of drama queens because no parent she knows would offer death threats. The FBI would certainly disagree with this piece of historical revisionism.

Katie then goes on to quote Minshew’s comments on death threats in full:

"I also hope this begins to end the death threats and character assassination against scientists and physicians who have tried to convey the science of this to the public."

What Katie objects to is the nature of the science being conveyed. As she puts it:

“Oh, The Science, meaning the science she likes. What about The Science behind the Hannah Polings decision? What about exploring The Science behind the 700% increase in autism over the past decade? What about The Science regarding the dozens toxic adjuvants in infant vaccines? How about researching The Science behind post vaccination regression? Or how about science not paid for by vaccine makers or the CDC?”

I suppose this is a fair summary of Katie’s scientific illiteracy. You don’t get to like some science and not others; it’s not a democracy. The science behind the Poling decision is what exactly? The decision was made on certain grounds but were they scientific ones at all? The science behind the increase in autism says there is no real increase in autism prevalence. There are no dozens of toxic adjuvants in any vaccine. Calling for research not done by CDC or vaccine makers is a typical appeal to conspiracy theories.

Katie naturally concludes that Minshew and Offit are working overtime to stop further research into vaccines and autism links. They both feel that too much money has been wasted already and there are other more profitable avenues for research but neither is working actively to prevent such research. That is in Katie’s head. Unfortunately there are many such notions and Katie has applied these with a broad and inaccurate brush to two quite respectable practitioners of respectively autism research and vaccine expertise. AoA censors all criticism directed at it so Katie could be forgiven for thinking that her style is acceptable. Outside of that protected environment it is not and reflects badly on any organisation with which she is associated. Bob and Suzanne Wright may regret placing their family loyalty above their duty to protect the reputation of their organisation. Currently Katie represents nothing more than a liabilty.

JB Handley's Latest Frivol.

2009-02-10T13:16:00.000-08:00

JB Handley has thrown the gauntlet to Paul Offit and sued him and the publisher of Autism’s False Prophets for ‘false light invasion of privacy’, whatever that means. The piece makes for fascinating reading.[HERE] According to the authors the crux of the matter lies at point 3:

“3. To stoke the fires of this controversy, to sell more copies of his book, and to place supporters of his pro-vaccination views in a more favorable and sympathetic light, Offit fictionalized the exchange between Seidel, a supporter of Offit's views, and Plaintiff, one of Offit's sharpest critics. Offit accomplished this fabrication by creating a made-up "plea" by Seidel for Plaintiff to stop promoting a certain autism therapy. Offit then falsified a "response" to this phony "plea" by quoting, completely out of context, a message that Plaintiff had posted on a different message board in response to an entirely different topic.”

So in the middle of a work of non fiction there is this piece of fiction expressly designed to make JB look really bad. I wonder what the courts will make of it. Does he look so terrible? As is usual in any of AoA's productions there is the occasional gaffe, like this one:

“If you don't like what we have to say, stop listening.We will bring the full resources of myself and Generation Rescue to stop this. We will sue you for libel and we will go after your homes and assets. My lawyers live to investigate and sue people like you.This will be your only warning.”

Did they really want the courts to know how fond of litigation JB is? Wouldn’t appear to be all that helpful to this upstanding businessman wanting to look like an offended party.

It’s a very rambly piece and hard to know what they're trying to string together given that though Kathleen is a non party in a hamfisted way there is an attempt to tie in neurodiversity to harassment of Gen rescue’s angels. But acknowledging that the harassers remain unidentified and then stringing it to unknown neurodiversity proponents is a bit of a stretch, but not for this crew apparently.

Needless to say, Columbia University Press and Paul Offitt aren’t taking this at all seriously and maybe the court’s will treat this as a piece of frivol.

Action for Children's Diabolical Advertising Campaign

2009-02-02T11:56:00.000-08:00

Dear Mr Day,

I am writing to protest the remarkably inappropriate advertising campaign you have running to apparently raise awareness of autism and how Action for Children charities can help. I have also seen the series of motherhood statements issued in response to similar protests, all more or less taking the combinatorial line that our intentions are pure and that these are Dan’s own words. The latter point may have had some validity if it were not for one expert who thought the whole thing smacked of brain washing and didn’t mind saying so. In fact some of the world’s leading experts have come out publicly criticising this advertisement. Here’s some of what they had to say:

From Dr Mitzi Waltz,

I had been hearing for several days about this advert. It has been incredibly distressing for many people with autism and their family member

I have now had a look and must say that I share their views. The voiceover distinctly says that his AUTISM was the problem, and implies that a special school is the solution to that problem.

You note above that families are struggling to cope, and I agree. As a parent, I have been in their shoes. The answer would not have been to remove my bullied, upset, hurt child to a residential school and then tell him that he needs to be a "better person."

The answer would be to provide support to struggling families and children in their own schools and communities, and to advocate for changing the system that seems to feel it is OK for young people with autism to be bullied and excluded.

This advertising campaign is disappointing and demeaning (by the way, the advert about the young carer also seems to fit the theme of accepting that children are dumped on, and that providing individual support without advocating for systems change is adequate.)

Dr. Mitzi Waltz
Lecturer in Autism Studies, University of Birmingham
(writing in my personal capacity)

From Professor Baron-Cohen
"Whilst I support any efforts to help children with autism and to alleviate suffering, I hope there will be more thought given to both the language and the imagery we use, to avoid risk of offence. For example, the name of the charity DAN contains the word "Defeat", as if autism is a disease like cancer against which we have to wage war. Autism is a complex mix of disability and strength, and whilst we need to work to find imaginative ways to reduce the disabling aspects, we do not wish to "defeat autism" since this would also eliminate the positive aspects. The latter include an excellent attention to detail, excellent memory for detail, and the ability to focus for long periods on a narrow topic. These features are not just seen in the high-functioning individuals or those with Asperger Syndrome but are seen right across the autistic spectrum. Sometimes these positive aspects can result in remarkable talents.

We need to work to get the balance right, between using treatments for those aspects of autism that need treatment (such as the language difficulties, the epilepsy, the self-injury, the gut issues, or the learning difficulties) and encouraging those aspects of autism that do not need treatment and are special, so that the person can fulfil their potential. An image of a child as a demon in an ad campaign is equally unhelpful if we are to educate the public about autism. These issues, about language and imagery, are important if we take seriously the notion of neurodiversity, and wish to show respect towards those who are neurotypical and neuroatypical."

Professor Baron-Cohen of the Autism Research Centre at Cambridge University

From Dr Tony Attwood

“I am very concerned that the advert gives a message that children with autism and Asperger’s syndrome are dangerous and potentially disturbed.

When the child refers to “correct errors in my behaviour” this seems to imply ‘brain washing’ and a sense of guilt for how he behaved.

Many of the behaviours I consider as coping mechanisms for the lack of understanding and respect from other people.

He refers to reacting when people insult him. Those that insulted him need the treatment.”

Dr Tony Attwood, author of “The Complete Guide To Asperger’s Syndrome”

Many other knowledgeable folk have protested this ill thought out campaign. It becomes apparent that Action for Children did not consult with anyone in the field before airing this sorry advertisement. For future endeavours, would you mind doing so?

Great Words of Jonathan Mitchell - A Compilation

2009-01-28T12:52:00.000-08:00

Clay Adams collated this collection of the Great Words of Jonathan Mitchell, all from the comments section of one post here.
jonathan said...

"david i pity you, anyone who would post such nasty insults and abuse is pathetic."

Hmmm, well let's just see about that, shall we?

jonathan said...

harry williams (aka socrates) a man who can't even have a roof over his head and house himself never accomplished squat in his life trying to give someone advice in an insulting manner, absolutely pathetic.

jonathan said...

harry you are homeless, you don't even have a loo to crap in, you did not do any of those professionally besides being a dishwasher. [Socrates had listed the range of jobs he had done and Jonathan declared they hadn’t happened, by fiat more or less]. The only girls you had sex with walked on four legs and are in the dog pound or animal shelter.

jonathan said...

Andrews: The person who needs pyshciatric help is you. You are one very sick dude, I suggest you get some help for your daughter's sake if not for your own sake.

Clay Adams: You are nothing but a gutless liar, what you said about my admitting on my blog that i learned to hate autism from my mother's knee is a complete and deliberate fabrication on your part. Grow up and get a life, you are truly pathetic.

Jonathan said:

Clay: I published your drivel on autism's gadfly. I have no problem publishing something where someone makes the complete jackass out of themselves that you did. You showed that I never said what you said. You proved yourself that you are an out and out liar, you only showed what a sleezeball you are by having to stoop to saying things about my mother and your lack of intellect about having to use these ad hominem arguments instead of stating some facts.

Gluyas: I am going to be charitable to you and not even respond to a deranged wingnut like you.

Jonathan said:

As I have said before for the umpteenth time, why don't you try to take your own advice and get a job and find a way to house yourself so at least you can have a loo to crap in anytime you want.

jonathan said...

Gluyas, if your mother had put you in an institution where a wingnut like you belongs, you would not be in the position you are in right now. You would be in a straight jacket without access to a computer or internet connection so you would not constantly be making the complete jackass out of yourself that your moronic behavior is doing.

jonathan said...

It saddens me that a moronic jackass like Clay Adams does not understand charity. I was only trying to spare him the embarrassment of looking like the imbecile that he is by not publishing what he wrote. But obviously, Adams just doesn't get it. He is too stupid to realize that he is only hurting himself by posting what he is posting him, showing himself to be the absolutely self-hating geriatic (says he's 58 but looks more like 88 in his photos) senile piece of shit slimeball that he is. He is only hurting himself with his lies, abusive behavior and assinine statements, not me. [I wonder what a psychiatrist would make of this gem?]

jonathan said...

For a homeless bum like you who never made a quid in his life except a brief stint as a dishwasher who has to crap and piss in his underwear and has to go to the dog pound to get his rocks off, you tell me, harry.

jonathan said...

Then why don't you do us all a favor then cubed. Why don't you get a smith&Wesson .38 and just shoot yourself in the head and end it all today so we don't have to read your long-winded chattering and nonsense on these forums and your ludicrous attempts to justify neurodiversity.

No, Jon-boy wouldn't stoop to such nasty insults and abuse. That would be, er, pathetic.
..........................................................................................................................................................
Not being as charitable as Clay, I see this as a public service announcement. Knowing the depths that Mitchell is capable of should be sufficient warning not to take the gentleman too seriously.

Why is it UNETHICAL to mention the telepathy of persons with autism?

2009-01-23T07:53:00.000-08:00

I was asked this question recently in connection with Facilitated Communication (FC) and armed with some references, I am going to attempt to answer it. Primarily the lack of ethics involves the unproven nature of ESP including telepathy. Secondarily telepathy is being used to caulk the holes in the lack of evidence for independent communication in FC by some participants, generally those of less ability.

The James Randi Foundation has a one million dollar cheque ready for anyone who can demonstrate any form of ESP including telepathy. Notably in the 1990s when Randi first encountered telepathy mixed with FC his first problem as he discovered was to authenticate the authorship of the communication. This he was unable to do and so the search for telepathy became moot in this context. [here]

Authorship authentication is what drives belief in telepathy. Here is one coherent explanation of why the client is expressing the thoughts and feelings of the facilitator; not because the facilitator is the only one communicating but because the client is reading the facilitator’s mind. This can reach ridiculous levels as demonstrated by the online writings of Mary Ann Harrington. Not only does she acknowledge that the facilitator can have enormous though subtle influence over the communication; [here] her thesis is that at a ‘higher level of consciousness’ the two can form a partnership, which is a different entity to either facilitator or client alone, based on telepathy.

Harrington is also a fan of the fairytale school of science. First, assume that fairytales exist. In her case she would like research, a great deal of research to be done, not to demonstrate the reality of telepathy but to explore its practical aspects. As the following list of questions for scientists to pursue suggests, she is firmly of the belief that telepathy exists:[here]

• Do our brain wave frequencies entrain during 'thought joining' creating a sympathetic resonance?

• What areas of the brain are being activated during the exchange? Are brain wave patterns altered during interactions?

• Is 'joining' occurring at a subconscious level? Does it assist in tapping into an emanating universal field of knowledge in addition to the knowledge base of the agent? Does adhering to the vibration of the agent help the brain filter material? Does it help the person with severe autism experience typical perceptual reality through the sensory system of the agent?

• Is it possible that two distinct frequencies blended together form a third frequency? (Think of binaural beats or chemical changes) How does this shared frequency affect communicative output?

• Can 'joining' be compared to the synchronization of coupled oscillators? Does this also help to explain group resonance?

• Does the agent serve as a catalyst, providing the stimulus necessary for the individual to access a response? Are his high-speed fleeting thoughts and chaotic flow being entrained by magnetic signals of the agent? Could these radiations produce image or thought receiving experiences by acting on the temporal lobe?

• Do sub-vocalizations enhance the process?

• Is the right brain being stimulated during the connection? Is that why the language used when paired with an agent is often prosaic?

• Does aligning with the rhythm of the agent help the person perform in a synchronized manner? Does it help the individual attune to the frequency of the earth? Do these signals smooth out circadian rhythm?

• Is the pineal gland primarily hyper active in kids with severe autism causing them to let go of ego based consciousness? Is it hypo active in higher functioning individuals resulting in rigid concrete behavior? Might this also be true of the amygdala? Might pineal gland and/or the amygdala be affected by the joining process?

•What role if any does the reticular activating system play?

But Harrington is not alone in fairytale science. These bona fide researchers ought to know better. Konstantareas and Gravelle conducted some research into the relative contributions from the facilitator of physical, emotional and mental support [1]. Crucially they assumed that the communication was authentic. They found that mental support, that is, the advance knowledge of the mental requirements of the communication task by the facilitator was necessary for successful communication. As the authors note, performances with mental support were around 100% successful, but without this knowledge, performances bottomed out to near zero. A skeptic would not be surprised. All experiments on the independence of the communication found exactly the same thing. The communication is coming from the facilitator not the client in the majority of tested cases.
From what I can see, telepathy looks attractive to some people because it explains the apparent input from the facilitator. This is not an ethical position to take however when the bigger question, the authenticity of telepathy itself remains unanswered. There are other reasons why ascribing telepathic abilities to autistic individuals may not be ethical. Firstly given the experimental history of disconfirming the authenticity of the communication, the field does not need any more controversy. Secondly, autistics deserve the same standards of science as anyone else. Harrington shows they are a long way from gaining the minimum. Thirdly, belief in magical thinking blinds you to other and more realistic possibilities. Everything I have read points to the unusual degree of rapport that develops between client and facilitator. Facilitators are in a much better position than most to point out subtle communicative efforts of their non verbal clients, knowledge that would be invaluable to parents of such children everywhere. Telepathy as the explanation for the rapport is frankly unhelpful as well as unethical.

1. Facilitated Communication: The Contribution of Physical, Emotional and Mental Support, M. Mary Konstantareas and Gregory Gravelle, Autism 1998; 2; 389

Review: Jenny McCarthy's Mother Warriors

2008-12-23T10:05:00.000-08:00

Courtesy of the local library, I now have temporary copy of Jenny McCarthy’s “Mother Warriors”. I have also read Paul Offit’s “Autism’s False Prophets’, which is quite a different book and of a quality several orders of magnitude above this attempt at down home intimacy on behalf of McCarthy.

I thought I’d review this book to answer one question. Based on the contents, would it influence the reader to look favourably at the Petitioners case at the Autism Omnibus Proceedings (AOP)? After all, that vaccines cause autism is the central thesis of this book and the AOP.

Perhaps unusually, the review should start with the introduction by Dr Jay Gordon, paediatrician and Evan McCarthy’s physician. In the same earthy tones that characterise the bulk of this book, Dr Gordon makes a series of quite remarkable statements. No doubt they are meant to be provocative, which serves many purposes, obscuring the absurdity of the actual statement being one of them. There is a deliberate lack of editing in this book, I think, again to keep that provocative edge as a substitute for a more robust foundation.

1. Introduction, Dr Jay Gordon.

If there are “A” to “D” list celebrities in Hollywood, I think it likely that there are parallel hierarchies among the professions serving them. Dr Gordon is unlikely to be among the first tier of paediatricians, judging from the Introduction. He makes the following assertions:

1. “The AAP and the Centers for Disease Control and Prevention (CDC) are filled with doctors who not only don’t believe the ideas in this book but actively ridicule them and spend a lot of money trying to disprove the causes and treatments so well presented when Jenny McCarthy and others in the cure-autism community speak and write”.

OK, so mainstream science has not adopted the vaccines cause autism thesis. And his point would be? Why should they, when the evidence from a great many sources, says there is no link. Note that the AAP wouldn’t have spent money on this since they aren’t a research body and the body who would be spending the money, The National Institutes of Health isn’t even mentioned. Did he write this in a hurry? The ‘actively ridiculing’ is a nice touch, gets the sympathy going but again, not something that the mainstream really does at all. There is no need.

2. “Vaccines can cause autism”

It’s a nice stand alone sentence there on the page, suitably dramatic and completely meaningless.

3. “The official position of the American Academy of Pediatrics may be the same as my personal position, but they are far too involved with the pharmaceutical industry to actually do anything but pay lip service to an open discussion.”

So the reason for the lack of belief among the mainstream or at least the AAP is that they’re all Pharma Shills. Does he really believe that crude overgeneralisation? I would think not, it’s simply there to bolster the true believers in the vaccines cause autism who would be quite lost without this central plank in their anti-vaccination platform.

4. “Yes, most vaccines have less mercury, but wait until the evidence against aluminum in vaccines becomes common knowledge. The body of research regarding aluminum’s harm to human cells already contains hundreds of articles. The most damning conclusions were recently published by Dr Robert Sears, a very well known and well respected pediatrician and the son and partner of Dr William Sears, long regarded as “America’s Pediatrician”.

Aluminum is the new thimerosal apparently. To bolster the drama of this ‘toxin’ we have Dr Robert Sears with all the second hand glory bestowed on him by his illustrious father. He’s going to need a lot of that glory for his ‘published’ work concludes basically that people on dialysis and very premature babies can develop aluminum toxicity. As for ‘published’, this is not the stuff of peer review, since it’s from his own book. You can find it on whale-to though.

The central point and one that is rather carefully avoided by Gordon and others promoting the toxin gambit is that the dose in the vaccine is absolutely minuscule compared to what is already there in the infant because of what the infant is exposed to in the ordinary course of living, especially if your infant drinks water. There are some comprehensive references to this topic. Orac of the Science Blogs, gives an overview here. The Children’s Hospital Philadelphia gives an overview here and a physician blogger weighs in here. The latter is important because she refers to peer reviewed research which came to the following conclusion regarding aluminium and vaccines:

“The authors calculate that when a similar adjuvant dose is given to an adult human, this will result in a rise of 0.04ng/ml over a baseline normal value of 5ng/ml - which would be completely undetectable but for the extremely sensitive methods of detection used for the 26Al isotope. If we’re talking about a ~3kg baby (about the same weight as the rabbits), the 6% rise in blood aluminum values would translate into a rise of 0.3ng/ml (i.e, the babies would have 5.3ng/ml aluminum levels instead of 5.0). Not exactly something to write home about, especially when you consider that the same dose of aluminum in the rabbit given it intravenously, saw a whopping 2000% rise in its blood aluminum concentration (an increase of 600ng/ml). (Edited to add: Even if the rise is in absolute terms, i.e 2ng/ml per vaccine, no baby would reach anything resembling toxic blood levels even if several vaccines were administered simultaneously).”

It’s that sort of thing that Gordon goes out of his way not to mention and for a representative of the medical profession, that’ s misleading enough to qualify as reprehensible though perhaps congruent with a “D” list pediatrician status.

Chapter 1: Opening The Can of Worms.

Overview: Jenny’s traumatic appearance on Oprah describing in seven minutes’s Evan’s first brush with convulsions, his subsequent cardiac arrest with the second and his initial diagnosis of epilepsy followed by the diagnosis of autism. She told the neurologist:

“My son is trapped inside this label call autism and I’m gonna get him out”. But, she’s really there on Oprah to be the ‘voice of those amazing women; who’ve been silenced by their doctors, and called stupid and ignorant. Jenny is ready with the truth and here it is:

“We vaccinated our baby and SOMETHING happened. SOMETHING happened. Why won’t anyone believe us?”

That’s followed by these two memorable lines:

When Oprah read a statement from the CDC stating that the science showed no link between vaccines and autism, Jenny replies:

““Who needs science when I’m witnessing it everyday in my own home? I watched it happen.” I replied with all the love I could muster in my heart. “Evan is my science.”“

Somehow this is unlikely to convince the AOP.

Chapter 2: Imagine

Overview: Something of a non sequitur but Jenny comes up with a child having fallen and hurt himself on the stairs as visible damage that is analogous to having developed autism following vaccination. There’s this line.

“The doctor just keeps shaking his head and denies that stairs could ever harm a child.”

This analogy doesn’t work at all well. I doubt it would convince anyone of an autism vaccine link, including the AOP.

The rest is also a plug for Jenny being the first to get the truth out about vaccines and autism and kudos to Oprah for making it happen. I would think there would be a number who might dispute this version of events.

Chapter 3: I’m not Crazy

Overview - interview on 20/20 for her book Louder than Words. Jenny relates that she spoke extensively about vaccines but that didn’t make it to air, only her talk about ‘the diet’ and recovery. On the way to the airport, a woman thanks her profusely for her autism work, which she thinks makes a nice demographic change from ‘nice boobs’. The tone becomes distinctively evangelical with this line, which is something of a theme for the entire book:

“I believe in manifestations, and I believe that the collective energy of all the women who had been waiting for someone to speak for them had manifested me as the one to do it.”

Chapter4: Diane Sawyer Rocks.

Overview: her interview on Good Morning America for the book Louder than Words. Her theme here is as follows:

“ As we talked about how the medical community doesn’t understand that children with autism are actually physically sick and how pediatricians across the country have no idea how to fix them, I started to realise that this was something I needed to pursue a little harder in the press”

“As I was talking to Diane, I decided I had to go kick some ass in the pediatrician world as soon as I left the show.”

Apparently pediatricians don’t necessarily buy into the leaky gut, inflammation, yeast overgrowth and constipation as being unique to ASD kids, so now it’s a war - Jenny versus the pediatricians.

So far there is nothing the AOP would find of interest.

Chapter 5: Stan the Man

Overview: Jenny is joined on her press tour by Stan Kurtz, Warrior Dad who has succeeded in recovering his son. The aim with Stan’s help is to have someone from the AAP attend a DAN conference to meet the DAN doctors and scientists who can teach the AAP a thing or two. As Jenny puts it to the AAP :

“The problem is that one in ninety-four boys has autism and most of them have chronic illnesses such as leaky gut, candida, constipation, metals toxicity, viral infections, PANDAS, bad bacteria and measles stuck in the gut, inflammation of the brain, and almost every pediatrician in this country does not know how to treat these kids or even know these symptoms are associated with autism because the American Academy of Pediatrics does not have anything in their medical journal or whatever it is that teaches doctors how to treat the children”.

I solemnly swear that this is a direct quote from page 33 of the book. Only a U of Goo graduate could produce this and proof if any is further required that this book did not suffer overly from editorial overview.

Chapter 6: Nothing Can Stop Me, Not Even Barbara Walters

Overview: Interview with Barbara Walters on “The View” and trouble in paradise when Barbara is informed by a helpful someone from ABC before the show that Jenny’s treatment can’t work. Summoned to Barbara Walter’s dressing room before the show, Jenny relates that with rage and fury Barbara screamed:

“ No that’s not what I said MOST doctors do NOT agree with anything you’re saying. Isn’t that true?”

And that’s what Barbara wanted her to admit on the show. But, Jenny, “scared, shocked and hurt” by this viciousness, knows she can’t back down because “so many mothers were counting
on me. I was really sacred. [possibly a typo]”

In the interview, she sticks to her chakras and gets around the problem by agreeing that autism can’t be cured but you can get recovery just like you could if you’d been run over by a bus!

Chapter 7: Home Sweet Home

As the title says - back home to Evan and probably the most sensible line in the book:

“ If the child could speak, he or she would say, Just because I stopped talking, Mom, doesn’t mean you should stop. Keep talking to me. I like hearing your voice.”“

Chapter 8: The Magnitude of Pain

A chapter for communal outpourings of shared pain and the venue is the TACA picnic, followed by readings from the fan mail. She concludes with:

“ People need to realise that it’s not just genetics. Genetics go from one generation to the next. This is an epidemic that has taken over on such a massive scale that it pains me to no end that they think it’s one gene that’s causing this.”

One gene Jenny? Where has that ever been stated?

What follows is the Jenny theory of susceptibility:

“If a child is born with an infection that no one can see and we vaccinate them while their immune system cannot sufficiently fight the toxins or viruses being injected, that child is going to get into trouble.”

And so much for modern perinatal medicine that there could be so many unknowable infections among the newborn serious enough to interfere with vaccination.

Chapter 9: Speaking of the Devil

The opening line:

“The AAP agreed to come to the DAN ! Conference! Hooray! Then again maybe not.”

They did send someone “with a big smile and sweet eyes” but she turned out to be unsatisfactory.

“In a nutshell she was telling us that if it’s not in their medical journal or their new tool kit they give to pediatricians, then nothing can be done. She told us to write a note to the AAP explaining our findings and she apologized that she couldn’t stay for the rest of the conference.”

How shabby of them, says Jenny for not sitting down with the leading experts on healing autism.
Oddly enough, from this and previous chapters, given what Jenny has revealed about her knowledge of pediatric training and practice, having a pediatrician like Dr Jay Gordon is beginning to make a kind of sense.

The AAP pediatrician :

“went on to tell us to say in the letter that these conditions are comorbid with autism, not that these conditions cause autism......I sat there puzzled because once I had fixed Evan’s comorbid conditions, the autism healed. So she was asking us to cleverly disguise what we believe by saying that these conditions have nothing to do with the cause of autism. Essentially she asked us to lie. These comorbid conditions clearly stem from vaccines and God forbid we say that comorbid conditions cause autism, because that would be a direct link to vaccines.”

This is an unusually clear statement of belief from Jenny, even though it’s weakened somewhat by having the pediatrician dictate what DAN practitioners might want to write in their very own letter to the AAP, which I think we can discount as not particularly credible. A lot of Jenny statements fall into this class.

Chapter !0: At This Moment in Time, The American Academy of Pediatrics Sucks.

This one and a half page chapter informs the reader that nothing came of the AAP involvement in the DAN conference and serves as the introduction to Part 2 of the book - the mother warrior stories Jenny has selected on the grounds that if the AAP and CDC aren’t listening, then listen to the mothers.

Part 2: Strength in Numbers

The mother warrior vignettes have certain commonalities. The mothers are sincere in that they firmly believe that they are doing the right thing by their children. Unfortunately they occasionally resort to the absurd to bolster that belief particularly in very odd portrayals of the medical profession’s beliefs and practices. Equally interesting is the use of medical authority, particularly of family members to legitimise various statements. More often than not the outcome is not enhanced legitimacy but one family member looking extremely foolish. Many of the vignettes appear to be unreliable accounts simply because the author could not be either rational or consistent in what she wrote. Some editing, even of a folksy book like this one, would have been a very good idea.

I think that this section of the book is best reviewed overall to assess what the various authors deem to be recovery from autism, since this would contribute to Petitioner’s arguments before the AOP.

Chapter 11: Michelle Woods: Mother Warrior to Kevin.

Michelle attributes Kevin’s problems to the following:

“Kevin had so much good development in the beginning and then he lost so much of it. He got really sick really fast and as soon as he started getting sick with all of his autoimmune stuff, that’s when he lost his developmental milestones.”

Alas, she goes on to write the following, neither of which are credible:

“Here’s a kid who was talking when he was just a few months old”.

This statement also does not fit at all well with her assertion that Kevin’s regression started at six months, which leaves no time at all for even really early talking.

“He had eczema all over his body, he started to bleed internally. He was anemic and the pediatrician said maybe it was too much milk.”

Right there I think you could reasonably assume that what this person claims might have at most a tenuous link with reality. This is such an insult to the training, the intelligence, the ethics even of pediatricians. Incidentally, bleeding associated with lymphoid nodular hyperplasia is extremely rare, though that is where Kevin’s bleeding is coming from according to Michelle.

Treatment for Kevin of the biomedical variety started with Dr Krigsman and the GFCF diet, which didn’t work for Kevin, followed by Dr James Neubrander and methyl B12 injections, which Michelle regards as miraculous. Miraculous seems to be an accurate descriptor. Within 24 hours of the first shot Kevin is behaving as follows:

“ He’s not pushing anybody, he’s not screaming, he’s sitting down, he’s doing his work. He’s happy, he’s laughing, he’s making jokes.”

One would think that B12 functions as a drug for mood disorders rather than the vitamin that it really is. Drugs for mood disorders, however, typically take weeks to have an effect. Further treatments added were hyperbaric oxygen and 6 mercaptopurine. Note that Kevin also follows a behavioural program (variety not specified).

Michelle relates that Kevin was enrolled in a mainstream kindergarten at age 5 without an autism diagnosis and with only problems with speech.

Chapter 12: Canaries in the Coal Mine

A favourite among the biomedical interventionists is the analogy between canaries and their sensitivity to toxins such as carbon monoxide in coal mines and autistic children and their perceived enhanced susceptibility to environmental toxins. Jenny summarises the concept and the attitude:
“These children are trying so hard to show us how to live in a cleaner world. I believe these kids are here for a reason: to teach us to eat better, clean up the air, and get rid of toxins because they can’t survive.”

Chapter 13: Amazing Maisie

Problems for Maisie began with her MMR and varicella vaccines given shortly after her first birthday. She started losing words. At the next check-up Melanie questioned the advisability of more shots, which was brushed off and Maisie got the next round. Soon after this she started hand flapping and other repetitive behaviours.

Her treatment consisted of the GFCF, diet vitamin supplements and “many, many hours of behavioral therapy”. Other treatments are not specified. There is some inconsistency in Melanie’s account.

“The first week on the GFCF diet, Maisie started talking” Is followed a paragraph later by; “ Maisie was diagnosed with Autism Spectrum Disorder (ASD) at age 2. Five months later, we had started her on the GFCF diet. She had learned more than fifty words by then”

Maisie was declared ‘undiagnosed’ at age four except for some residual speech problems, later resolved through an extra year of speech therapy.

Chapter 14: Lisa Ackerman: Mother Warrior to Jeff

Jeff’s problems began with the MMR and varicella shots when he was on antibiotics for his sixth ear infection. He gradually lost his words and developed toe walking, a fascination for spinning objects, rashes, diarrhea, an insensitivity to cold and pain but an intolerance for loose threads or labels in his clothes.

Treatment began with the GFCF diet. Lisa relates that Jeff would only eat Burger King nuggets, so she got the special boxes and bags from Burger King, substituted the GFCF version and Jeff went along with it. Lisa makes a rather interesting comment on how she views the fit of biomed among other therapies:

“ABA made a huge difference in helping Jeff. But he had so many health issues that we had to keep pounding dirt with biomedical treatments while also trusting ABA to do its thing.”

They also began chelation therapy, eventually with glutathione and hyperbaric oxygen. Other devices they used were an augmentative speech device and a FM auditory trainer hearing aid, which helped tremendously with Jeff’s super sensitive hearing. He later required medication for colitis and oesophageal reflux. L carnitine and valtrex were also added to the treatment regime.

Jeff is not recovered, but is in mainstream classes with an aide. Lisa Ackerman is the founder of Talk About Curing Autism (TACA).

Chapter 15 Siblings

Lisa’s chapter reminded Jenny that siblings rarely get talked about even though they often bear the brunt of parental focus elsewhere, having to eat their favourite foods out of sight of those on diets or may feel too embarassed to have their friends over at particular ages. Jenny’s advice is to:

“ Nurture them, respect them and listen to them”.

This does not at all mean that having autistic siblings is a bad thing as Kev points out at
http://leftbrainrightbrain.co.uk/?p=1727

Chapter 16: What a ‘Trip’

Jenny relates how in the absence of defining physical characteristics to give a hint, autistic behaviours can look like bad behaviour and bad parenting. She encounters an entire airport waiting room glowing with disapproval over a ten year old flapping, screaming and running in circles despite the mother’s best efforts to distract him.

Having admonished her waiting room neighbour she then goes online to see if there’s anything inspirational about raising a special needs child. She finds “Welcome to Holland” a well known piece by Emily Perl Kingsley. The narrative analogy to raising a disabled child is planning a trip to Italy and arriving in Holland instead. If, however, you mourn the loss of Italy continuously, you will miss the beauty of Holland which wasn’t what you expected but has its own charms.

Chapter 17: Becky Behnan: Mother Warrior to Jack - You’re never too old.

As the subtitle suggests, Becky is the mother of a thirty year old autistic son. Back in 1979 there were few resources for autism and few doctor who could recognise it. Becky managed to find the forerunner of DAN, one Dr William Phi lpott through a referral from Bernie Rimland. Dr Philpott was working on curing schizophrenia, but childhood schizophrenia was an equally common name for autism back then. The methods were quite unorthodox - ozone therapy, amino acids treatment for candida and removal of wheat from the diet, but not unlike the modern DAN protocol. Becky relates that she went tp see Lovaas at UCLA:

“Lovaas had gone on to tell me that my marriage was going to fail, and that it was going to ruin my other son and the best thing I could do for the whole family was to put Jack in an institution.”

The threat of the institution was constant. Jack also got a primitive kind of behaviour therapy, which consisted of hold downs, the first of which lasted 8 hours designed to have him pay attention to the therapist.

Jack is reasonably independent today but too naive Becky thinks to live alone.

Chapter 18: My Autism Whisperer

This is Jim Carrey’s moving tribute to the beauty of their relationship and the beauty of Jenny’s heart as revealed by her struggles to overcome Evan’s autism. Doubtless this is one of the book’s selling points.

Chapter 19: Katie Wright: Mother Warrior to Christian

Katie Wright is the daughter of Bob and Suzanne Wright the founders of Autism Speaks (AS). Unlike AS, Katie firmly believes that Christian’s autism was caused by vaccines. She is on the board of NAA and Safe Minds, two rabidly anti-vaccination organisations. She seems to be an intellectual feather duster judging by her opening lines:

“ We tried everything: traditional therapies, ABA, speech, OT, everything. We even tried the heavy pharmaceuticals and we were warned over and over again, not to do the diet, that it was very dangerous.”

Now, what exactly could possibly be dangerous about an exclusion diet? The heavy duty pharmaceuticals don’t rate the skull and crossbones, but a paltry diet does? The absurdity is breathtaking. She follows it up however by trying it anyway - on a child that apparently eats only yoghurt and succeeds in two days. If that narrative doesn’t hang well for you, there is always the following:

“I felt horrible because I had wasted so much time traveling all over the country trying antianxiety and anticonvulsant drugs on my child when I should have tried just changing his diet.”

I get the gist of what she actually means here but it is not clear.

Things improve for Christian when Katie discovers the Specific Carbohydrate Diet through the referral of a Generation Rescue angel whom she contacts at three in the morning. Apart from chelation there is no specific mention of any other DAN therapy and the rest of the chapter is devoted to the perfidy of AS and their scientists in particular.

AS does not rubber stamp the biomedial agenda and Katie laments that:

“ My parents, unfortunately, can’t control who’s on the board. They don’t have the power to bring in scientists who believe in the gut-brain connection so the board at Autism Speaks would be balanced. It’s in the contract that the scientists have the power. It’s been very frustrating. I have urged a number of biomedical doctors to submit grants, and they were all rejected. Arrgh! And the reason they were rejected was apparently they didn’t meet the criteria. I knew they were bullshitting me. This was political. They didn’t want to fund this stuff.”

There is no indication whether or not Christian is recovered. I suspect not as he is referred to as “severely affected by autism.”

Chapter 20; The Power of Believing

This id a very short chapter admonishing the faithful that you have to believe that you can heal your child, you have to believe that biomedical treatments will work and that there is no room for second guessing.

Chapter 21: Samantha Gray: Warrior Mother to Zack.

Samantha’s story is poignant in that one month after her son was diagnosed with autism, she was diagnosed with breast cancer. Typical of this brave lady, she went out to buy as many flash cards as she could find so that she could do something with Zach through the trials of chemotherapy. However, she like the many before her has some problems with keeping the data straight. We are told that Zach’s problems started at eighteen months with increased tantrums and projectile vomiting, which Samantha thinks might be due to the Vitamin D milk Zach is on. She makes special note that her internist husband does not want to stop the milk because it’s good for Zach. Now, this is strange coming from an internist. We have an 18 month old on Vitamin D, which is a fat soluble vitamin and this is good? Fat soluble vitamins are potentially extremely toxic and considering that Samantha also tells us Zach drinks a gallon of milk the dose seems to be uncontrolled and potentially high, for an 18 month old.

As is usual for the authors of this book, when confronted with abnormal stools of very abnormal quantity and projectile vomiting, the pediatrician elects to do nothing. But we do not hear of her physician husband pursuing this either, so something in this narrative is decidedly off.

Zach’s treatment starts shortly after Samantha discovers Dr Andrew Wakefield. As she puts it:

“I printed out Dr Wakefield’s research and I was excited because it had real doctor material in it.”

Somehow, she managed to miss the bit where the research is retracted by the Lancet and dubbed a hoax by the scientific community.

Initially, Zach was treated with the GFCG diet, enzymes, colostrum and vitamins and treatment continued with chelation among other things under the guidance of a DAN doctor. Zach is considered recovered and attends mainstream pre school. Samantha has not received any complaints from his teacher.

Chapter 22 God Help Us

Apparently we need the help because Dr David Tayloe joined Jenny on Larry King Live and in the commercial break told Jenny that many parents don’t bring their kids in for wellness visits so the pediatrician has no choice but to play catch up with their vaccines, much to Jenny’s consternation that sick children are being vaccinated. But then what would he know? He’s only President of the AAP.

Chapter 23: Stan Kurtz: Warrior Dad of Ethan

If you thought the range of altie treatments was extensive to date, prepare to be amazed. Stan Kurtz has done his homework.

Ethan appeared to present as the typical autistic toddler - oblivious to others and that’s what sent him for a diagnosis. Stan doesn’t mention vaccines specifically as preceding the diagnosis. He also had “candida, 21 food hypersensitivities, low Krebs cycle and energy functioning, possible mitochondrial problems, eight metabolic abnormalities, high levels of uranium in his hair, low excretion of mercury, high levels of copper, and low levels of zinc. Physically he had sensory issues, low awareness of pain, low muscle tone, severe ankle pronation, dark puffy eyes, red cheeks, distended belly, pale and dry skin, pronounced right-sided muscle weakness, sensitivity to light, little eye contact, obsessive and perseverative behaviors, and what appeared to be mini seizures.”

To combat that he started the GFCF diet followed by the Specific Carbohydrate Diet to combat high levels of chlostridia. His supplements included Vitamin C, cod liver oil, zinc, L carnitine, CoQ10, B5, DMG, Super Nu-thera, an amino acid complex, probiotics and Epsom salts baths. He was also on antifungals for the candida. Then they started valtrex for the virus infection Stan assumed that Ethan had. Apparently Stan's method of finding which treatments are required is to ask the experts at DAN conferences, which is where Stan found that autistic children were being treated for viral problems with valtrex. By way of justification Stan relates that there have been two cases of late onset autism at ages 14 and 31 following herpes simplex encephalopathies. Stan goes on to document the herxheimer reaction Ethan has to the valtrex lasting 21 days whereupon it seems that the reaction as well as most of the autism symptoms subsided. Ethan is now in mainstream school without an aide. He continues yhe diet, supplements and hyperbaric oxygen as well as OT for fine muscle coordination problems.

Chapter 24: Committing

As the name implies this short chapter is about committing to the biomedical treatment regimes through Jenny’s sister JoJo who has many of the same issues.

Chapter 25 Branson’s Miracle

Brnason’s “slide into hell” began three months after his vaccines given the day after his first birthday. Why there is so frequently a three month delay no one explains. At fifteen months he lost his ability to point, imitate, his speech. His sense of balance, eye contact and his pain receptors. He had diarrhea for six months and scratched himself until he bled. But Coral imagined herself in a field in Scotland in the same mindframe as Mel Gibson in Braveheart and vowed to fight this “invisible dragon”. In Coral’s words:

“My son has gastrointestinal issues, leaky gut (where the yeast has eaten holes through the entire length of his intestines), massive heavy metals poisoning, systemic yeast, fungus, eczema, high oxalates, severe food allergies and a virus and bacteria problem.”

For that Brnason takes between forty and eighty supplements a day, a strict GFCG diet, cold laser treatment, applied Kinesiology and has his head reset weekly with Cranialsacral Therapy. After two years Brnason is no longer considered autistic.

Chapter 26: Barbara Walters is Not so Scary After All

Jenny relates that as the guest on Larry King Live, Barbara tells of the resentment she had growing up with a mentally retarded sister who she suspects was autistic. Jenny realises that talking of recovering autistic children may have been personally very painful and perfectly explains the hostility Jenny encountered.

Chapter 27: Gina Tembenis: Mother Warrior to Elias

This is a sad story. Elias developed a severe seizure disorder after his vaccinations at four months, which progressed and ultimately killed him at far too young an age. This resonates with Jenny’s history of Ethan going into cardiac arrest also following a seizure.

Chapter 28 Guardian Angel

This is devoted to a particularly bad seizure episode Evan has triggered by the memory of Elias. The trauma on all parties is just huge. I may have no time and less respect for this D list wannabe celeb but in this I take my hat off to her.

Chapter 29 Collective Awakening

This is the final call to arms chapter, which lays out the McCarthy line:

• Our children are our science.
• Government agencies and paramedical organisations become corrupt eventually, it’s inevitable.
• Medicines are deemed safe then pulled off the market.
• Are we to believe that all 36 vaccines are safe and have no side effects, that one size fits all or that all children are born with a perfect immune system?
• It’s time to ditch the vaccine schedule and GREEN the vaccines.

Chapter 30 A Mother Warrior Is.....

“A mother who hears there is no hope for her child and instead of retreating and mourning, breaks down walls. Weaves her way through obstacles, follows her intuition even when people tell her she is crazy. She is a mother who believes in hope.”

Conclusion

This book is science by assertion. There is no external support anywhere for any statement made. As such it wouldn’t be of use in the AOP. The anecdotes fail to impress. Recovery seems to happen, but there always seems to be a residual something there. This may be a case of diagnosed at two and no longer fit the criteria two years later. Two is a very young age to be diagnosed and four or even five is too young an age to declare them undiagnosed. All of the children are on behavioral programs though sometimes the reference is indirect. I think when Stan Kurtz refers to 900 hours of therapy the inference is more logically behavioral than biomed.. Interestingly two warriors regard biomed as the necessary precursor to ABA - referring to it as making the child “available for learning”. If the child has lots of physical problems, that is not unreasonable, though I and others would dispute the manner of resolving the physical, especially in the case of Valtrex. It seems the more damage a therapy can do, the more likely that adverse side effects are attributed to some kind of herxheimer effect. This is nothing more than child abuse of a particularly nasty sort. The anecdotes may not be all that reliable given the difficulty various authors had with keeping their stories straight. In which case these would not help the AOP.

This is a very poorly written book which is unedited and it shows. Caveat lector.

Collaring Anti-Vaxxers

2008-11-22T08:10:00.000-08:00

In a rather rare event, a letter was sent from the AAP's NY Immunize Group to Representative Carolyn Maloney of the US Congress concerning the Kirby/Blaxill 'briefing' at Rep. Maloney's meeting. It is not a sweet missive, no indeedy. The rarity is the inclusion of terms such as 'junk science', misinformation and irrational among others. It's a wonderful letter, well naturally I would think so, being a polemicist and all. However, it really is about time the actual meaning of the anti-vax agenda was stated clearly, in effect not allowing someone like Maloney to retreat behind the irrational as a means of being representative.

The letter to be found here also has a recommendation to read Paul Offit's Autism's False Prophets. I would hazard a guess that when AoA get round to the rebuttal, Offit will feature prominently. The other effect of the straight shootimg nature of this letter is that the folks at AoA are dealing with very definite accusation and that's harder to answer than if the missive had been politeness as usual, so conspiracy theorising of collusion between Offit and the AAP seems to be quite likely.

The text of the letter:

"Congrezsperson Carolyn Maloney
1651 3 Avenue, Suite 31 1
New York, NY 101 28-3679
Dear Congressperson Maloney,
We are concerned about misinformation you may have heard at a
recent briefing presenting the non-scientific, irrational proposals
espoused by David Kirby, and the Age of Autism with regard to a
supposed link between autism and vaccines. Vaccines save lives.
Study after study has shown absolutely no link between vaccines
and autism.
As pediatricians, teachers, nurses, cl-~ildc are providers and parents
across New York State and in your District, we are very aware of
the struggles that the families of children with autism face and the
challenges that test the children themselves. In your position as a
political leader, it is important that you have the information you
need to support 'the science, the research and the continued work
toward identifyirlg the causes, triggers and evidence based
treatment for children with autism and autism spectrum disorders.
All of the research, including the most recent and exhaustive study
done by the Columbia University School of Public Health, has
proven no link between vaccines and autism. And yet a few
people, some of whom are making a great deal of money from the
suffering and false hope of frightened parents, continue to beat the
drum for this discredited position. Many others offer dangerous and
unscientific approaches to "cures."
We urge you to stand with us against the forces working to bring
irrational fears and "junk science" into the world of children's health.
As you know, imm~~nizationasre one of our greatest public health
victories along with clean water.
Childhood diseases that can kill and maim our children are just a plane ride
away, and yet the anti-immunization groups continue to push for less and less
protection for our children. Just this year the Centers for Disease Control
reported the largest outbreak of measles in decades. New York was one of the
states that experienced a significant outbreak of serious disease. You might also
be interested in knowing that the measles that was imported into the US came,
not from the third world, but from Europe and from Israel: Developed areas that
are experiencing significant outbreaks of disease due to weak public health
policy.
We highly recommend that you read Dr. Paul Offit's recent, very well reviewed
book, Autism's False Prophets. We have included a review from The Wall Street
Journal and an editorial from the New York Times.
We will be contacting your local District Office to schedule a time to come in and
talk with you about this very important issue. We know you want to work with us
to help protect the children of New York and the children across the country.
Sincerely,
Elie Ward, MSW
Co-Chair, NYS Immunization Coalition
Enclosures ("

Update: Kirby wrote to the AAP. This line seemed irresistable to me:

"I also respectfully ask that the AAP please provide me with specific instances of “nonscientific” or “irrational proposals” that I put forth at the briefing, so that I may respond accordingly."

So I sent them a helpful link. 10:1 it doesn't make it though the censorship, though I was quite respectful.

Defaming Autistics in the Name of Autistic Advocacy

2008-11-15T15:55:00.001-08:00

Please note that Michelle Dawson disagrees with this post. Her comment is as follows:

"I've posted my opposition to what Alyric has done here and here."

I disagree and for only one reason. I'm quite sure that when Michelle started working with Mottron and writing advocacy on behalf of innumerable folks everywhere, she had no idea where it would all end up and her own prominence in it. But, she is that prominent and there it is. The cost to prominence is to be a front runner. Therefore the argument that this is going to make her life difficult has less legitimacy than it might. Actually, I tend to think that it makes life more difficult in the long run to avoid this kind of confrontation and this confrontation has been brewing for a very long time, to the point that autism advocacy here in Canada has been poisoned by it. Now that's my opinion and goody for me, what a nice safe opinion it is too. Am I going to be affected by this action? Nope and because of that dear reader, you must take what Michelle thinks into account first before you do anything at all.

The main drag:

I wrote this letter (not a very good one) because I've had enough of the advocacy of some so intent on their narrow pursuits that they think that those who contribute in ways not supportive of their agenda can be defamed at will. That the autistic involved is important and that this importance is being recognised in the broader autistic research community is not actually central to the matter. What matters is that whole slabs of raw data, namely the perceptions and cognitive characteristics of autistics, cognitive psychological studies all, are being dismissed as 'anti-ABA'. Why? Because I suspect that this is a major point of unavoidable embarassment for behaviourists who can claim in 40 years of research nothing at all that furthers understanding of autistics, yet they have vast intervention mechanisms in place. Naturally, if you're FEATBC and are running a major political campaign to have Medicare fund ABA, anything seen to detract in any way has to be marginalised and if at all possible de-legitimised. Well that has to stop. I know their agenda and know more thAn enough about how governments fund autism services to be in sympathy with their aims, while not necessarily thinking that this is wonderful for all autistics and all skill sets. It emphatically is not and there's no evidence to say so. Just look at Medicare funding for autism services in Australia - and that's PT, OT and speech therapy, no where near ABA. They're talking to the the tune of 20 services per annum, what a joke.

It is however, no joke when autistics are defamed in the name of attempting to sideline enormously important research because it doesn't fit with your plans. How can anyone claim to represent autistics or have their interests at heart while doing so is simply not possible that I can see. As such, I'm calling on anyone who cares to write to FEATBC and any politicians you care to protesting their extraordinary activities, highlighting the importance of this research and emphasisng that reasonable people, including legitimate advocates just do not do such things. I write from the outsider perspective, not being Canadian and I think that it would be helpful if folks outside of Canada could let Canadians and their politicians become aware of the disgust in which these advocacy efforts are viewed. The Medicare for Autism website lists politicians supportive of this initiative and they are the ones who will be most aware of the very negative publicity that FEATBC's activities are likely to generate since politicians always look at the wider picture.

7 November 2008

Dr Sabrina Freeman
Executive Director
c/- Ms Jean Lewis
Board Member
Families for Early Autism Intervention of British Columbia (F.E.A.T.B.C.)
Suite 425 - 1489 Marine Drive,
West Vancouver, BC, V7T 1B8

Dear Dr Freeman and Ms Lewis

I am writing concerning the posting in duplicate of the following to the FEATBC message boards on, Wednesday, October 29, 2008 at here and here.

The text is as follows:
“The National, CBC's flagship nightly newscast hosted by Peter Mansbridge, has proven itself completely worthless to anyone who has any respect for truth.
Here is the piece of garbage they have recently produced:

http://www.cbc.ca/national/blog/special_feature/positively_autistic/

It is important to note that Michelle Dawson is a self-proclaimed "autistic" who has never had a formal diagnosis. A newspaper report has revealed that she has supposedly "self-diagnosed" herself. Much evidence suggests she is an opportunist who is seeking profit and attention by exploiting public ignorance about autism.
Temple Grandin, a real autistic who is NOT against ABA, says:

"The problem is, you talk to parents with a low-functioning kid, who've got a teenager who still goes to the bathroom in his pants and who's biting himself all the time. This guy destroys the house, and he's not typing, no matter what keyboards you make available. His life is miserable."

Why do people like Michelle Dawson never talk about how miserable these children get without treatment? That's because they want the fame and fortune of Temple Grandin but have nothing to contribute, so they resort to any method imaginable, often at the expense of truly disabled children.

Tony”

Everybody has an opinion but, the problem is that this posting will place the Medicare for Autism Now campaign in jeopardy if it ever becomes apparent in government circles that a prominent autism advocacy society, which claims to be doing their all for their constituency - autistics, one would assume, blatantly treats one of them to a disgraceful display of overt defamation and disrespect. No one it seems has considered the effect of such antics on an outsider. I am an outsider, though reasonably knowledgeable of the history of the altercation, having followed it from my own country before I arrived in yours. Your government decision makers are also outsiders. What is immediately obvious is that a prominent Canadian researcher in autism, Michelle Dawson, who has done as much as anyone to drag psychological research into autism into the cognitive revolution and who selflessly represented herself and therefore all autistics before the Canadian Human Rights Tribunal (CHRT), is being grossly misrepresented. Those who seek prominence and profit do not elect to work as unpaid volunteer researchers (for
the many years that the CHRT case was in progress) and neither do they seek no damages following the successful outcome of their CHRT case. It is also obvious that Ms Dawson’s diagnosis will have been scrutinised most thoroughly by CHRT. The numerous non sequiturs in this posting would not under any circumstances be put to any other Canadian researcher. Imagine if Dr Eric Fombonne were to be asked to “talk about how miserable these people would be without treatment”. The attitudes expressed represent ignorance combined with base ingratitude. I am not a Canadian but I know where to find the text of Ms Dawson’s CHRT outcome. These lines are particularly memorable:

“the Tribunal finds it disturbing for the future of autistic people that they be seen because of their condition to pose a threat to the safety of others and some form of nuisance in the workplace. An employer has a duty to ensure not only that all employees work in a safe environment but also that ill perceptions about an employee's condition due to poor or inadequate information about his disability lead other employees to have negative and ill-founded perceptions about him.”

I plan to use those lines in the event of discrimination in the workplace against my ASD offspring. But those lines, bearing the imprimatur of the Canadian Human Rights Tribunal, would not exist without the perseverance and hard work of Michelle Dawson. They can be a resource for anyone, including non-Canadians.

I find it extraordinary that an autism advocacy organisation should allow such contempt for what are admirable achievements by anybody using any yardstick. There are not many Canadian researchers who are listed as principal author for papers published in the prestigious journal Psychological Science, which is where one can find Dawson et al, The Level and Nature of Autistic Intelligence. There are not many who contribute to book chapters for sentinel reference texts. Ms Dawson has done that also with her contribution of Learning in Autism to J. H. Byrne (Series Ed.) & H. Roediger (Vol. Ed.), Learning and memory: A comprehensive reference: Cognitive Psychology. What country wouldn’t be proud of such a daughter? What autistic advocacy organisation wouldn’t be proud of such an autistic daughter?

The sentiments expressed by the poster and disseminated by supporters of FEATBC do nothing for the reputations of those involved and may do a great deal more harm than foreshadowed given the importance the participants put on persuading governments to do more for autistic children. That these proponents have disseminated such blatant falsehoods about a prominent and autistic Canadian does nothing to persuade others that their concerns are justified and worthy of serious debate.

I look to the governance of FEATBC and Medicare for Autism Now to rectify this situation.

Yours sincerely

David Kirby, PR Flack and PoMo Enthusiast

2008-11-11T16:21:00.000-08:00

Note: PoMo or Post Modernism hangs on the belief that all truth is relative, which may make some sense in the literary criticism field but reaches comic status when applied to Science, (see Gross and Levitt’s ‘Higher Superstitions’).

David Kirby and fellow conspiracy theorist, Mark Blaxill gave a briefing on vaccines and autism to Congress. True to form, Kirby’s briefing reflects an absolute commitment to projecting an image and as for the facts, well let’s not get too worried about those. Many bloggers and writers have noted Kirby’s departure from accepted standards of journalism, even though he apparently is keen on the status if not the responsibility. He remains a PR flack it seems, which is his background, judging by the contents of his presentation. I thought it would be worthwhile to see how many distortions, misrepresentations and fabrications of the facts about vaccines Kirby could deliver in under an hour, to support the earnest if not terrible sincere image of “I want to save the vaccine program, not destroy it. ” Et tu Brutus?

The following points are presented in chronological order noting that some points represent well known canards of the anti-vaccination movement. Where possible, I have linked to the necessary corrective.

■ This is a national emergency. We now have hundreds of thousands of children with autism in this country, and the majority of people in this country are under 18 years of age.

Canard # 1: The autism epidemic. There must be one so that autism can be a medical problem rather than a behavioral one. This has been debunked so many times. Orac does a pretty good corrective with the help of Dr Paul Shattuck. Not surprisingly, Dr Shattuck was promptly labelled a Pharm Shill - but they got the wrong Merck. Drat - they’re all over the place! http://scienceblogs.com/insolence/2006/04/well_that_didnt_take_long_the.php#more

■ It is estimated that the cost of care, education and housing for a person with autism runs up to 2 to 3 million dollars per person, and we have at least 250,000 people with autism in this country, so we are already up to the 700 billion, 750 billion dollar mark, coming at us in the future.

This is not so much a canard as a distortion of the autism spectrum and the omission of reference to the actual costs of caring for any person over an average lifespan. Figures like this are based on a 100% institutionalisation rate, which is ridiculous, but it probably sells well in the middle of a financial crisis and do note the many references to the financial crisis in this briefing.

■ But the vaccine program is in deep trouble. There is tremendous distrust among parents today and they don’t feel like they are being leveled with.

There are some who’ve been bamboozled by the green our vaccines publicity misinformation campaign, but don’t you think it’s just a tad dishonest to accuse the vast majority of parents - like about 90 - 95% who give all the vaccines, of being as gullible as the tiny minority? The autistic community has had enough of this tactic as well. As for greening the vaccines, there’s a lovely line from science blogger Dr Mark Crislip:

“Green our vaccines? The only green you will see by getting rid of vaccines or decreasing their use is the grass growing on the graves of children needlessly killed by preventable infections.”
http://www.sciencebasedmedicine.org/?p=186

■ And I think where we are heading in terms of science and medicine, is identifying those children who have certain genetic susceptibilities so that they cannot necessarily handle the rather crowded vaccine schedule we have today. Probably 99% of the children can handle it just fine. But what about those 1% who have a certain genetic susceptibility to vaccine ingredients and other environmental toxins?

Canard # 2 There is a subgroup of children who are ‘susceptible’ to well, anything - the vaccines, the number of vaccines, the ‘toxins’ in the vaccines or the preservative. The fact that all of these are quite different aetiologies and there is no evidence for any of it doesn’t seem to bother anyone. And this is a ‘briefing’.

Canard #3 Epidemiological studies are not sensitive enough to pick up vulnerable subgroups. The implication above is that the subgroup is too small to be picked up by epidemiological studies but not too small to jeopardise the Autism Omnibus Proceedings. That is a nonsense. Epidemiological studies have picked up correlations as rare as 1:38000 and 1;100000. Given the huge sample sizes, the statistical power of the studies finding no link between vaccines and autism was plenty to find very small subgroups if they existed, a point described very well in Dr Paul Offit’s “Autism’s False Prophets”.

Canard #4 The vaccine schedule is too crowded. You know you aren’t dealing with rational people when they make this claim or talk about ‘toxin’ in vaccines, because the quantity of what they’re talking about in the vaccine is absolutely dwarfed by factors of tens to hundreds to millions of the substance already present in the infant to be vaccinated. Take the antigen load in vaccines. The entire infant schedule has been measured in the low hundreds. The infant is bombarded with millions of antigens all day every day, but somehow the vaccine schedule with its paltry load is too much? They talk about aluminium in vaccines, either not knowing or choosing to forget that the levels of aluminium are a hundred times that already in the infant and too small to be a noticeable addition. The reason for that is simple enough. Aluminium is one of the commonest elements on earth. Ditto for formaldehyde. The trace level left over from manufacture is overshadowed thousand fold by what the infant already has. Heck we make the stuff as a byproduct of some metabolic processes. Dr Mark Crislip, bless him, nails the 'too many too soon' here: http://www.sciencebasedmedicine.org/?p=289

■ We need to look for genetic susceptibilities. Are people born with certain vulnerabilities? Maybe immune problems, autoimmune problems, or mitochondrial dysfunction. What about metal metabolism? Some people are able to excrete and metabolize heavy metals much better than others. So, is there a certain small subset of the population that is particularly at risk for vaccine injury that might lead to autism and other problems?
It seems that anti-vaxxers have adopted a pattern of assuming that untested hypotheses are central to their case such as here with vaccines and ‘susceptible’ groups. This was also one of Healy’s motherhood statements. According to a very recent survey of the experts who manage such susceptible groups, the experts are practically unanimous in endorsing the vaccination schedule, as is for the most part, and see no reasons for delaying it. That much Healy at least should have been aware of. See Barshop and Summar: Attitudes regarding vaccination among practitioners of clinical biochemical genetics. http://www.ncbi.nlm.nih.gov/pubmed/18816884 The conclusion to this paper is worth noting:

“In summary, it is clear that the general opinion held by practitioners in the field of Clinical Biochemical Genetics favors the full schedule of vaccination for their patients. The overwhelming majority also feel that the benefits of the current schedule outweigh the risks to individuals with undiagnosed metabolic disease. Most have never observed any significant adverse event which was attributed to a vaccine reaction. Some respondents have seen the association once or seldom in their careers, but none felt it to be frequent. The fact that there were few encountered events of long-term deterioration due to a disease for which vaccination is available probably simply reflects the low incidence of those diseases, due to the effectiveness of vaccination practices. A panoply of questions remain, however, and there is a great need for more data.”

■ Then there is the Maloney Bill, and I really hope you’ll take a look at it and consider cosponsoring it. That would fund a study of vaccinated vs. unvaccinated populations of children. Dr. Julie Gerberding has said that this study can and should be done, and I would just say that if this study was done and done properly, and there was absolutely no difference in outcomes between vaccinated children and unvaccinated children, it would shut me up.

Now there Kirby is indulging in one or two fibs. While the likes of Healy could say that such a study ‘can and should be done’, I can’t see Geberding saying any such thing or at least meaning what Kirby is disingenuously suggesting here given his and other anti-vaxxers legendary propensities to fabricate statements by Geberding. Kirby is quite outrageous in
misquoting Geberding particularly in relation to Geberding’s remarks about the limitations of the CDC’s Vaccine Safety Datalink (VSD) data. See Epiwonk’s careful deconstruction of Kirby’s shenanigans here: http://epiwonk.com/?p=79.

The legion of problems a comparative study between vaccinated and unvaccinated populations has been comprehensively discussed here, http://photoninthedarkness.com/?p=154, including the ethics. The author also flatly disagrees that such a study would be either necessary or effective. What, after all would such a study be looking at with respect to vaccines. Kirby is careful not to specify.

Secondarily, it is doubtful on past record that Kirby would be satisfied with the results of such a study. When the CDDS Calidornia showed that autism rates were not dropping he shifted the goal posts, though he had sais he would abandon the hypothesis that autism was caused by TCVs. Comparisons of autism in those who got thimerosal and those that didn’t, those that got MMR and those that didn’t and with those on different vaccine schedules haven’t satisfied him or any other ant-vaxxer. For Kirby it’s just another ploy to keep the money flowing and for the rest - it’s always been about how wrong vaccines are, how unnatural. No answer will satisfy them.

■ We’re seeing extremely high levels in autism among children of immigrants, children born in the United States. For example, the Somalis in Minnesota, and I’ll be looking at this more in the near future. Their rate of autism is going through the roof. And there is virtually no autism, or very little autism reported in Somalia.

Perhaps Kirby is the sole public relations flack that doesn’t know that Somalia has no government. Who, in that miserable land would be keeping track of autism rates? Maybe that explains his singular lack of success in journalism.

■ And yes, there is a big debate, still, about whether autism is truly a genetic disorder, or is there an environmental component? People who argue that autism is genetic say that it’s always been with us at this rate. Now, you cannot have a genetic epidemic, so the way to explain the increasing numbers, they say, is through better diagnosis and better reporting.

Canard #5 The environmental component must be some exotic chemical in the environment. Some have cynically suggested that introduced chemicals have the singular advantage that someone may be sued about their introduction. Nevertheless, Kirby does not seem to have considered that among identical twins where rates are discordant, the environmental chemical exposures would be very similar, identical even in utero. “Environment’ covers a lot of ground, including epigenetic factors.

There follows a laundry list of metabolic states the autism as disease model likes to trot out, namely neuroinflammation, low glutathione levels and oxidative stress. Kirby does not mention androgen pathways, which is infamous Geier castration therapy territory and therefore far too much the hot potato for a Congressional briefing. However, the theories of metabolic idiosyncracies supposedly associated with autism were laid before the Special Masters hearing the Autism Omnibus Proceedings and there were demolished soundly by some of the finest specialists around. The transcripts are available from: http://www.uscfc.uscourts.gov/omnibus-autism-proceeding.

■ He [Burbacher] gave half the monkeys injected ethylmercury, replicating the vaccine schedule; and he gave the other half ingested methylmercury in the form found in fish. And what he found was, even though the ethylmercury cleared from the blood more readily and did not cross to the brain quite as much, the ethylmercury that did get into the brain immediately started converting to inorganic mercury.

Rather surprisingly he admits to ethylmercury clearing the body much faster, though he does not state just how huge the different rates of clearance are, days for ethylmercury against months for methyl mercury. Nevertheless, there is no one in the antivax camp who will acknowledge that Burbacher did not attempt to differentiate the actual contributions of either added doses of ethyl or methyl mercury to brain inorganic mercury, he just ground the brains up and assumed that what they had been given was unadulterated organic mercury but he had no way of bring certain of that. See BC ‘s take on this: http://bartholomewcubbins.blogspot.com/2007/01/bc-on-autism-revisiting-burbacher-2005.html

■ “Hannah’s autism was caused by a vaccine-induced trigger of her underlying mitochondrial dysfunction.”

This line from Kirby is pure fabrication. The government conceded no such thing. Stephen Novella has the definitive rebuttal of this: http://www.theness.com/neurologicablog/index.php?p=203

Canard #6 Mitochondrial disorders are a significant factor in a significant number of cases of autism aetiology and the method is disruption of mitochondrial DNA through exposure to toxic chemicals. This position has been adopted so quickly in certain quarters that it is relatively common to hear that “I’m going to check my kid for ‘mito’”, regardless of the difficulty of doing so, legitimately that is, or the enormous differences in clinical presentation between autism and a mitochondrial disorder severe enough to lead to encephalopathy. Prometheus has a comprehensive overview of the subject at: http://photoninthedarkness.com/?p=149,

■ Kirby quoting Dr Bernadine Healy: “Officials have been too quick to dismiss the hypothesis as 'irrational,' without sufficient studies of causation, without studying the population that got sick.” “You can’t rely solely on epidemiology to solve a physiological mystery; we have to look at the kids. And then she said, and I think we should all take this to heart, “Never turn your back on any scientific hypothesis because you are afraid of what it might show.”

Canard #7 The powers that be, that is, CDC, FDA, AAP, WHO and the IOM are afraid to look at vaccines and autism for fear of what they might find. This is a peculiar statement by Healy, not corroborated by a single supporting syllable, and is quite possibly the most foolhardy motherhood statement this lady has yet made in a long career of making similarly stupid statements about a variety of topics. Fortunately, upon enquiry, the IOM were quite willing to offer the salutary corrective to Healy’s nonsense. See: http://autism-myths.org/2008/11/the-iom-are-afraid-to-look-at-susceptibility-groups/

There are undoubtedly many more myths, distortions of facts, fabrications I’ve missed in Kirby’s one hour long presentation to the US Congress. He did not apparently come away unscathed. One senator’s aide managed to pull him up on at least one occasion. However, as one can see, it takes quite a bit to dispel the whole of it and Kirby no doubt relies on not many having sufficient information to be able to assess the magnitude of his mythology. Is this man a dastardly cur, with no respect for data and no moral compass? Perhaps, but I think it far more likely that he’s simply entirely self-serving and with a marked tendency to regard truth as entirely relative. In other words, he’s his own PR flack and a bona fide Po Mo enthusiast.

What sort of an advocate is this?

2008-10-13T17:18:00.000-07:00

On this day of Thanksgiving in Canada, one would think that most people would reflect on what’s right with their world, an opportunity to be an optimist if only for a day. For some, this is never going to happen. No matter how much it would be in their interests to join in the celebrations, if the good things do not precisely match their specifications then there is nothing in it for them to be thankful about. Such a dog in the manger attitude matters not at all, unless you claim to be seen as an ‘autism advocate’, in which case it matters a great deal.

Harold Doherty claims to be an advocate for autism in Canada, but take a look at his reaction to Michelle Dawson’s success in her Canadian Human Rights Tribunal case against Canada Post. His blog post covers all the tried and true strategies of dishonest folk everywhere; quote mining, lies, defamation and an appeal to the readers worst instincts, though the attempt at the latter is so juvenile, the persuasion value is probably nil.

It must be noted that everything Harold writes should be seen through the filter of his personal agenda, which is that if the family, for whatever reason, decides that their offspring is too much of a burden, then the State should provide care. Basically it’s a return to institutionalisation. Naturally any attempts to understand autistic people or refer to aspects of autism that may be positive or even neutral are to be undermined at the first opportunity in case some official takes note and might think that institutionalisation may be highly inappropriate for autistics, simply because they are autistic. That an autism advocate has such an attitude is passing strange but this is Canada, where as Michelle Dawson has remarked with considerable accuracy:

““Autism advocacy” is the widespread effort to make the world as free of autism — that is, of autistic people — as possible. “

Quote Mining

Interestingly, Harold’s quotes cover those aspects that mitigate Canada Post’s actions or highlight the disability factor. Do read them, What is entirely absent are those aspects of the case that are so important to parents who know, not merely fear, that their offspring are going to face that same sort of discrimination in the workplace. That the Tribunal recognised the following is pure gold to worried parents:

“the Tribunal finds it disturbing for the future of autistic people that they be seen because of their condition to pose a threat to the safety of others and some form of nuisance in the workplace. An employer has a duty to ensure not only that all employees work in a safe environment but also that ill perceptions about an employee's condition due to poor or inadequate information about his disability lead other employees to have negative and ill-founded perceptions about him.”

What sort of an advocate is this?

Lies and Let’s do a spot of defamation

Harold Doherty does not like Dr Laurent Mottron and he frequently and probably erroneously attributes an anti-ABA position to him. In order to bring his name into disrepute, Harold is not as careful as he ought to be. Though ‘care’ may be insinuating that Harold is simply careless rather than adopting the age old tactic that if you sling enough mud, some of it will stick eventually. Be that as it may, Harold once again gets the facts wrong:

“The expert evidence was provided solely by a Dr. M called as a witness by Ms. Dawson. Dr. M. was qualified as a credible expert witness by the Tribunal despite his close ties to Ms. Dawson:pertaining to Ms.Dawson’s condition.”

Ms Dawson didn’t call any witnesses and Dr M, otherwise known as Dr Laurent Mottron was there in his capacity as a well known and highly regarded researcher, in other words, as an expert on autism. Insinuating that his credibility could be compromised by his working relationship with Ms Dawson is Harold’s little stab at defamation. Note, it looks like Harold has cleaned up this post somewhat. The original accused Michelle of having covered up her role in Auton. That’s the real deal in legally liable defamation.

What sort of an advocate is this?

Juvenile Dementia

The majority of the post is devoted to taking pot shots at Dr Mottron. Most of this is incredibly juvenile and in the form of references to the ‘mysterious Dr M’. This is surprising because Dr Mottron’s testimony to the Tribunal is incredibly informative about autism (see pages 24 to 29). What parent wouldn’t want to know about this information. It’s not as if there is such a pile of it to be found. Harold’s reaction is to harp on yet again about the statement made by Dr Mottron and Michelle that to search for a cure is nonsensical. This is hardly controversial no matter how Harold likes to spin it. We have no way of curing a brain configuration laid out in the first trimester of gestation, which is what a cure necessarily entails. It cannot be done, not now and not for the forseeable future.

What sort of an advocate is this.?

IACC RFI Submission

2008-09-21T14:09:00.000-07:00

To whom it may concern,

My apologies for this being a little late. Unfortunately, I had some illness to cope with and was unable to meet the Friday deadline.

My concern in all of research into autism and extending to what is done about it is that very little is known about autism period. Therefore, interventions have in general little evidence-base since none of them start where understanding of where the autistic person begins. This is perhaps the only field in the helping professions where this is the case and a sorry state of affairs it is. The reasons are I think mainly historical.

To date, what happened with the developmentally delayed was overseen by a fairly radical form of behaviorism, Applied Behavior Analysis (ABA) derived from B F Skinner's operant conditioning paradigm. I should stress that this is an evolutionary dead end as far as mainstream psychology is concerned and any enquiring researcher should read Professor John Mills "Control: A History of Behavioral Psychology" as a fairly good description of the fatal flaws in that paradigm. Suffice it to say, ABA and its research methods, because they have no need in their world to delineate what autism is in order to treat it, have been the reason why so little is known and why interventions have very little in the way of an evidence base. Behaviorists on their self report will proclaim the effectiveness of their interventions. However this is little more than anecdote from a biased source given that in forty years there has been exactly one randomised controlled trial of ABA as an intervention, Smith, Groen Wynn, 2000, and the results were marginal to say the least (especially taking the two errata into account). This problem with the great divide between research and intervention was also noted in the NRC 2001 report.

There are multiple reasons, why it is absolutely essential that what is done, educationally and in other ways with the autistic population starts with an evidence base of the ways in which autistics are in learning styles, in perception and so on. This is what is missing in the field for all practicable purposes and that is an indictment on everyone working in it. Why is it that according to recent report, most social skills interventions are outright failures? Well perhaps it's because these are behaviorally based and therefore divorced from any knowledge of where the autistic in this social equation is coming from.

I would ask that the IACC spend more dollars on cognitive psychological investigation of autism. It's a new field, but not totally devoid of information. Dawson et al's "Autistic Learning", available in pdf from http://psych.wisc.edu/lang/pdf/Dawson_AutisticLearning.pdf is a decent primer.

Kind regards

Media Spin and Neural Plasticity

2008-09-11T14:52:00.000-07:00

Sometimes, well perhaps more often than not, the comprehension gulf between a scientific publication and the press release about it is immense. Indeed, I cannot think of one instance, including the array of execrable journalism about vaccines and autism that gets it as wrong as the press release of Hensch et al’s paper in Cell, titled: "Experience-Dependent Transfer of Otx2 Homeoprotein into the Visual Cortex Activates Postnatal Plasticity."

The press release, titled, Trigger for Learning waxes lyrical about brain plasticity and learning, extending it to autism with this reference to the lead author Dr Takao Hensch:

“Dr. Hensch said developmental disorders like autism are a result of impaired timing of these learning "windows," like the one during which children learn to read."

Two things are notable about this statement and this paper. Primarily, the paper is about the development of vision and we have known for quite some time that there is indeed a ‘window of opportunity’ for the development of vision. The paper is not about learning and as far as I know, there is certainly no ‘window’ for reading and neither is there one for learning in general. With that in mind I asked Dr Hensch if he could verify the article’s depiction of what he said.

Dr Hensch replied with:
“Thank you for your question and interest in our work. I apologize for any confusion brought about by the media. What I said was "disorders such as autism, in which researchers believe critical periods may be inappropriately accelerated or delayed." I am unaware of any critical period for reading as you point out.”

Quite likely Dr Hernsch is referring to the accelerated head growth noted in autistic toddlers. This is quite some distance from ‘windows of opportunity’ for learning that the press release implies. It’s a shame in a way because it detracts from the beauty of this work. Science can be truly wonderful, especially at moments like this where a protein, initially responsible for forming the head of the fetus in very early development is recycled to play an important part in the laying down the connections for processing visual information. How cool is that?

Neural plasticity is not well understood as yet but what we do know of it tends to support the notion that the ‘window’ of cognitive development is quite wide and that those promoting ‘early intervention’ on the back of short windows of opportunities for learning are doing so based on no evidence as “The Myth of the First Three Years” makes very clear. As Drs Frith and Blakemore pointed out to a teacher who also hadn’t kept up with her neural development:

“Some parts of the cortex, including the frontal cortex, which is responsible for cognitive functions such as planning, decision making and self awareness, continue to develop during the teenage years and into the twenties.”

Ed: In Need of Fixing

2008-08-14T14:29:00.000-07:00

Some blog posts are more important than others. As any Hub reader knows, there are reams of Facebook style socialising blogs mixed in with more substantive pieces. I don’t begrudge the need for the social dimension usually, unless I could see that the whole thing might descend into social group think of the calibre of the Autism Speaks message boards. Given the numerical presence of autistic bloggers on the Hub, that seems to me unlikely, so it’s not really an issue except for some due vigilance to ensure that the actual autistic presence remains very high. Otherwise very important posts, like the following may be marginalised.

Ed of ‘Ed’s autism page’ wrote a post by invitation for Christschool’s blog , titled: “In need of Fixing”. The subject matter – abuse of people by systems supposedly designed to aid and treat them can really only be adequately addressed by someone on the inside, like Ed or like Amanda or a few experts who know very precisely what goes on, but much more importantly for the likes of you and me who are so insulated by lack of experience, these folks are coming up with cogent arguments about why these abuses happen. Not a thing is going to change unless the dynamics become transparent. For me, Ed’s post raised a large number of points that really made me think about this, and those points are what I’d like to focus on. Naturally, this post is simply to encourage as many folks as possible to read Ed’s post in its entirety and gain their own insights. So to the points in no particular order:

• The way that we (the public) know that Republicans are behaving inappropriately is because Democrats reported or make sure that it gets reported. The way that we (the public) know this about Democrats is because Republicans make sure of it. Without this competition how would we know?

Sounds simple enough, but how often do we note that only in truly equivalent power structures, is oversight actually going to work? So the first question for any system is the equivalence or lack of among the elements. I think the conundrum of the JRC could be explained quite well if you have a closer look at the supporting structural elements.

• The reason that some violations of public officials who aren't a part of the Republican/Democrat system are hidden from the public for a longer period of time is because those who set regulations and are thought by the public to be enforcing those regulations choose to conveniently ignore or look the other way. They also often knowingly contribute to the problem and are in positions to set and enforce regulations for the very purpose of protecting the violations and the violators within their same (or a similar) branch of government.

This is probably the main point and well supported by the many references Ed gives. ED goes on to elaborate some of the reasons why the regulators are not regulating. Among which:

• Whether authority comes from parents, teachers, or someone who is granted this authority by the public, what should be responsibility is too often seen as entitlement. Direction and guidance too often becomes unnecessary control and manipulation when regulators don't get regulated.

If I have this right, then what gets done is what can be done and that does not have to bear any relationship with what should be done. What enables the moral vacuum between reasons and actions is that no one is regulating the regulators. Perhaps a hopelessly naive question, but shouldn’t all this be perfectly well known, since people have done lots and lots of work on systems and the corruption of systems, which strictly speaking, human rights violations by regulators would fall under?

• When every behavior is seen as an emotional response and gets critiqued as unsophisticated, populations of people have their values made obsolete. If on the other hand behavior is seen as the result of a mental or spiritual defect it may become more convenient to dismiss that very same population of people as deserving of being ignored and other more severe types of punishment.
Rationalisation 101 and note the two ways to do it. Ed made a point that really got to me on this aspect of things:

• The understanding of this dynamic begins with the acceptance that the US Mental Health System was never intended to provide for the needs of its consumers. It was designed to meet the needs of the public. It is a type of corrections Department where punishment is the primary method of enforcing behavioral standards.

Now we can see the necessity for the rationalisation.

• I've noticed that oppressed groups are often taught that they do not and cannot understand the sophisticated language of their oppressors. I've seen that often when people were taught that something is beyond their capacity for learning they don't put many efforts into finding out whether this is true or not. Sometimes people's liberation is really not as far away as they are taught.

Just thinking how much of a step it would be to even begin to question the status quo as delivered by the system. Also thinking how many never get anywhere near that step.

• I have also noticed that people who are caught up in the oppression of others sometimes have little understanding of what they do and how it is oppressive because their scope of understanding is limited to a realm where oppressed populations are not allowed to express their experience.

OK, this was a real eye opener for me, never ever having come close to imagining it. I keep thinking of the essay “The Smile”, which I can’t find back. Is there a single oppressive system of any type which is not maintained by that ‘limited’ scope of understanding?

• I believe behavior is seen as the cause of (or what needs fixing in regards to) learning disabilities, psychological and psychiatric problems, and certainly many neurological problems as well. I believe that one of the main reasons that autistics are treated more severely within all these classifications (which I have been described having all of them at different times since birth) has a lot to do with how what is all too quickly determined as misbehavior is treated with the worst forms of punishment. In a typical institutional environment, I think autistics are the least adaptable to these harsh environments which can lead to a cycle of gross misunderstandings and the worst kinds of treatment.

This total emphasis on punishment as the naturally deserving outcome for institutional residents is more than a bit disturbing. It is of course, the way the JRC is run, which makes that institution in the scheme of things, just one more institution, albeit with much more formalised punishment regimes. For the rest, it seems that the same structural elements that defy regulation in other institutions are at work here as well. There are no equivalencies of oversight, so that never works no matter how many complaints and/or attempts at regulation are made. The parents do not want their children back, so they will rationalise anything on the grounds that ‘you didn’t know Caroline before’. The fact that Caroline remains essentially unchanged doesn’t count for much. The regulatory authorities don’t want to upset anything either. Every time JRC does something outrageous, on top of their endemic torture regimes, that is, the authorities cave. After all, for them it’s a good deal and reasonably economical. Matthew Israel is nothing if not a good marketer. Basically he’s said – leave your very worst behavioural cases to me and I will look after them for a price you will be able to pay. And he does. There’s a reason for using punishment. It’s cheap because it’s simple and any fool can do it. Combine with computerised instruction, which doesn’t require teaching qualifications and the whole show can be run by a bunch of high school drop outs. Profits will flow and everybody benefits, except the clientele. But as Ed points out, the system is not set up for them.

There’s a lot more in Ed’s post that I haven’t mentioned and that’s because these are complicated ideas that I’m working my head around.

Autism Omnibus PSC, Whose side are they on?

2008-08-03T14:22:00.000-07:00

Sullivan, writing for LeftBrain/RightBrain has a post lamenting the poor performance of the Petitioner’s Steering Committee of the Autism Omnibus on behalf of the parents. Feeling that as the AO was a going concern, the PSC should be doing the best they could for their clients, such as noting as others have done before them that there are cases where compensation has been made where autism was also involved. OK, it’s not applicable to more than a few maybe, but since they were so willing to extrapolate Poling, why not these cases?
In any event, I’ve been wondering just what the PSC is doing in light of the very short but also damning testimony proffered for Colin Dwyer – all in one short day.
First up – Dr Mumper, whose basic testimony has all been seen before, but here’s a few twists. Led gently into the ring by PSC lawyer, Tom Powers, Mumper was quick to stress that the Dwyers had done everything possible financially to assure Colin’s continued treatment and improvement. However, the concern for financial strain on the family didn’t go quite so far as assuring that very expensive tests were carried out by an accredited laboratory. So, the family is out of pocket to the tune of thousands for no gain, because there is no reason to assume the lab knew what they were doing and who would trust results from a non accredited lab? Why were they sent to a non-accredited lab in the first place? Second, it suddenly comes to light that urine test results are ‘provoked’, but the reference ranges are not. Kathleen has a really thorough post on all this. So, Mumper is left looking counterfeit and clueless and the Special Masters have noted that the results are worthless.
Second, a quick plug for the paper of Young and the Geiers is put up by PSC lawyer Williams, but look at how he did it. Here, says Williams, is a paper that shows a causal relationship between TCVs and autism. Directing the Special Masters, he then goes on to advise, that though they may distrust the Geiers, it was really Young’s paper and all the Geiers did was provide ‘access’. Kaiser Permanente who own the data may have something to quibble about with the access issue, but the main point is that a PSC lawyer told the Special Masters to just ignore two out of three authors on one paper because there may be a trust issue there! What are they doing? Perhaps point three may add some direction.
Powers, on all occasions, has emphasised the ‘dynamic’ nature of the ‘scientific evidence’ regarding TCVs and autism. Never mind that Marcel Kinsbourne’s neuroinflammation theory first saw the light of day a few weeks short of the commencement of the AO. But then these guys are heavily into the ‘plausibility’ in place of ‘probability’. So, as predictably as the sunrise, the PSC is assuring the Special Masters that they cannot possibly come to any conclusion because two very important ‘expensive’ studies are due to be published in September. But in any case, says Williams for the PSC, the Special Masters may assume that the studies will support the PSC! At that point, I wondered if I’d misread Holland’s transcript, but no. So, who is the PSC representing?
Not the parents; some of the lunatic statements on this day of testimony demolish any pretension to being there to serve the parents. They’re there simply for themselves and as much of that $2.4 billion they can get hold of. Their tactics have not changed in the least. It took six years to get the PSC to the table and they complaining all the way that the studies just were not there. Haven’t got a good theory, go for the newly minted variety produced by a guy noted for 30 appearances in vaccine court and one paper in a medical journal. String it together with as much speculation as necessary and hold off for as long as possible. The longer this drags out the more in billable hours, expert fees etc is available. The real losers in this have always been the parents. Vaccine court personnel can be irritated by what they hear, but that’s a passing thing. For the parents, who is going to support their autistic children in the future is no passing phase. No doubt Powers et al will have concocted a convincing tale why Vaccine Court will not be that support, in the very likely event that it concludes that autism and vaccines have no association. As I recall, Powers laid some of the groundwork for that on a recent Autism One program.

Queer Goings on at Queens. Supporting the FAAAS agenda?

2008-08-01T15:39:00.000-07:00

25 July 2008

Dr D Walker
Dean
Faculty of Health Sciences
Queen's University,
18 Barrie Street,
Kingston, Ontario K7L 3N6

Dear Dr Walker

Researchers pulling back the veil on adult autism is the remarkably misleading title of an article published in the Vancouver Sun on July 20 and prominently featuring Dr Deborah Elliot of Queens University. I attach a copy of the article's text for your reference.

This article purports to be all about research outcomes in adult autism. In reality it is a series of unsupported ugly statements promoting the worst stereotypes of autism to be found anywhere. Some were contributed by Dr Elliot herself, among which:

“They may be able to get an advanced degree, but once employed they can't interact with their co-workers in a normal way. There's no normal coffee chit-chat, Elliott explains. They sometimes ask embarrassing questions and easily lose their tempers.”

The sheer superficiality of this statement leaves me breathless. However, my real concern is that future employers and others who may relate to my offspring will have read this unbalanced piece and her life will be that much harder. For the record, lots of people make embarrassing statements and lose their temper. They have no label. Further, there is a good case to be made about the abnormalities of 'normal coffee chit chat' given the frequency of backbiting, character assassination and any number of pathological outcomes

“But they often don't come to the attention of mental health experts until they're reprimanded at work for making an inappropriate comment, or charged with harassing or stalking.”.

Dr Elliot is claiming a serious confound for adult autism, namely harassing and stalking behaviours, which has no research support anywhere. Again, my chief concern is for the future of my offspring who will have to deal with these manufactured prejudices. It appears that the author of this piece has used Dr Elliot and by extension Queens University to give credence to the most sensationalist and thoroughly unsupported statements. It does not appear that Dr Elliot read the finished article. Otherwise, how could an academic with any reputation condone the following glib offering?

“Or the office clerk who beat up a woman on his way to the bus stop one morning for the simple reason she was in his way. He was obsessed with not walking on the cracks between the tiles on the sidewalk. “

This suggests rather strongly that adult autistics are likely to beat up any mere stranger for no apparent reason. Simply to leave such a statement in an article is to peddle prejudice. How does anyone know the reliability of this account? The journalist is no guide. She has taken as her source, Karen Rodman of FAAAS (original title: Families of Adults Afflicted with Asperger's Syndrome). FAAAS is simply a hate site, replete with innuendo, anecdote from dubious sources, liberally mixed with the glue of garden variety spite. Dr Elliot could have taken some care not to be seen in the same article or at least, not to endorse some of their more extreme positions. This article likes to portray violence as a feature of the autistic profile and it is a common enough gambit among budding but unscrupulous researchers and journalists. I refer you to some real research on the subject - Murrie, Warren, Kristiansson, & Dietz, 2002 and Barry-Walsh & Mullen, 2004. There is no connection whatsoever between violence and autism above what is to be found in the general population.
Imagine my surprise to see the following profile of Dr Elliot as a research participant for The South Eastern Ontario Community – University Research Alliance in Intellectual Disabilities.
“Her interests include advocacy for vulnerable populations, including people with disabilities, the homeless and people with severe and persistent mental illnesses “
The hypocrisy is self evident.
I and my autistic offspring, indeed the entire autistic community would take it as a great favour if Queen's University and the research consortium would withdraw its support for this article's gross mischaracterisation of a very complex condition and notify the paper of such. The editor's details are as follows:
Patricia Graham
Editor in Chief, Vancouver Sun
Address: #1 - 200 Granville Street, Vancouver BC V6C 3N3, Canada
Phone: 604-605-2318
Fax: 604-605-2668

This article and Dr Elliot's participation in it are in direct violation of Queen's University's own policy statement on harassment and discrimination, a fine irony given Dr Elliot's assertion that harassment is such a feature of autism.
Yours sincerely

"Indistinguishable From Their Peers"

2008-06-23T11:19:00.000-07:00

How many times has the claim 50% (or close to) “indistinguishable from their peers” been beamed across the ether in pride of place in every call to parents and governments to support ABA as the intervention of choice with autistic children? How many know that the claim is misleading at best and probably better characterized as reprehensible? Everybody knows of Lovaas’ famous 1987 study that the claim springs from and the follow-up study from McEachin in 1993 that enshrined the claim in marble. This was based on McEachin’s PhD thesis and according to Victoria Shea who took the time to read the thesis, the reality is somewhat different. Make that a lot different. Shea’s article highlights a number of interesting things about the original 1987 study and the follow-up that I wasn’t aware of, among which:

· The ‘1987’ study was really conducted from 1970 to 1984 and not published until 1987. Seven of the 19 experimental subjects were referred to the UCLA Young Autism Project between 1970 and 1974. The follow-up study took place between 1984 and 1985 and was not published until 1993.

· One of the ‘best outcome’ students went into special education and was no longer considered ‘normal functioning’. True, another of the experimental kids was mainstreamed after the sixth grade but as Shea remarked , attributing that to what happened in pre-school might be stretching things quite a bit.

· The individual data for the Vineland and PIC is usually ignored, but here is the crux of the ‘indistinguishable from peers’ claim. Quoting Shea: “ there was only one ‘best outcome’ youngster who had all tests in the normal range.” Eight had at least one score in the clinically significant range and most had more than one.

· Apparently as part of the ‘indistinguishable from peer’ claim, they used a Clinical Rating Scale, never before seen in psychology and apparently not since either. The scale was administered on the basis of a 20 minute interview by a psychology graduate student; no blinding, no careful probing but also no evidence of reliability or validity for the scale in the first place.

· No measures of the opinions of teachers or peers were ever reported. So the claims of Lovaas that teachers found the ‘best outcome’ children indistinguishable from peers or by McEachin that teachers and peers did not see the ‘best outcome children as having unusual problems or being different are way beyond the data.

· Shea also reports some curious remarks of Lovaas on the possibility of reproducing the 47% “ indistinguishable from peers” result. It’s a sort of sliding scale. At the top, if the intervention is administered precisely as the original YAP and by UCLA clinically trained therapists, then 47% should be reached. If the training was provided to the therapists at UCLA but through a workshop setting, then Lovaas envisaged a 20% success rate. At the bottom of the scale, providing training to therapists at just any old workshop and the possibility of success according to Lovaas “would be less than 10%”. I wonder what Lovaas made of the Sallows and Graupner study results, which reversed this order in practice? “Less is Beautiful” sums it up.

So there it is. Behaviourists are definitely a glass half full kind of people. There is no study on the face of the earth, which cannot be reported in the most optimistic terms.

Caveat lector !

Reference: Shea, V. (2004). A perspective on the research literature related to early intensive behavioural intervention (Lovaas) for young children with autism. Autism, 8(4), pp. 349-367.

Review: Behavior Therapy for Children with ASD

2008-06-20T08:10:00.000-07:00

Every now and then I level some criticism in the general direction of ABA as a method of enhancing the well-being of autistic children. And generally the motivation to do so comes from what I consider quite fraudulent claims made by ABA proponents that they are, ‘scientific’ in either principle or method (they claim both), effective for everyone and/or more effective than any other teaching method out there. None of those claims stand up to scrutiny and yet they are all of them commonly cited. That ABA therapists readily claim them is quite congruent with the aspirations of that field. That those claims are broadcast with what appears to be autistic support is a bit more worrisome. I really believe that autistic self-advocates have to be very careful about what they are seen to be endorsing. “Behavior Therapy for Children with ASD” by Zosia Zaks contains most of those fraudulent claims thereby authenticating methods which really should be overhauled and preventing the development of teaching methods, which might, for a change, start out with autistic perceptions and learning styles as a foundation. It’s the latter point I worry about most. ABA, because of its non-scientific methods and narrow base just is not capable of incorporating new material into the repertoire, especially material that is not a good fit for the standard reinforceable step-wise approach of shaping, chaining and so on.

For the record I’m no expert when it comes to ABA, which got me thinking about what constitutes being an expert in any field really. Among my rambling cogitation, I came to the conclusion that an essential element is that the subject is one’s life’s work. Unless the person lives breathes and works in that area, I doubt that they could develop the necessary depth of approach to the subject matter to be a reliable expert. Not, mind you that this necessarily confers truth value to their ruminations. There are experts in phrenology and homeopathy, for example. I also don’t believe that an academic qualification necessarily confers all that much gloss to the expertise. It might and in some fields may even be considered necessary but it is not in my opinion always a necessity for expertise. History has too many exceptions. Michael Faraday comes to mind.

Looking around the myriad Hub bloggers it appears we have just two ‘experts’ in ABA, Janna Hoskins and Interverbal, both with the necessary immersion. This is or was their life’s work. They really know about this stuff. Not that there aren’t a number of gifted amateurs out there. There are; it’s just that ABA isn’t their life’s work. I also think that knowing a good deal about behaviorism in general and ABA in particular is something of a necessity if you’re into autism advocacy and it doesn’t much matter which PDD label applies to you and yours either.

And back to the claims made in this paper in the order in which they appear.

The best thing about ABA is that it works with everyone"

This statement was made not by a professional, but a parent, and one rather prone to overstatement. However, that does not absolve the author of this paper of the responsibility for allowing such a nonsensical claim to pass unchallenged. The one thing that is known about ABA is that it does not work with everyone. Every study ever done has a sizeable minority of children for whom this intervention did precisely nothing in any domain; language living skills or IQ. There are very few (I think the number remains at 1) scientific studies of the effectiveness of ABA. Smith Groen Wynn 2000, a properly randomised controlled study of ABA had 2/13 children who made it to mainstream classes without an aide but showed no improvement on any other measure. Not only does this intervention not work for everyone but it also does not work for everything. Sallows and Graupner's study had a minority of children who appeared to regress entirely. The most famous study of the ineffectiveness of ABA was Smith et al 1997. An archival study, he looked at a group of children whose IQs were judged too low for them to be a part of the original Lovaas study. The results after two years of intensive therapy were disheartening. Yet, a number of professionals cite ABA as the method of choice for those with severe cognitive challenges. The evidence says otherwise.

“Applied Behavior Analysis (ABA) is a scientific discipline that seeks to understand and improve behavior using data and scientific methods.”

I got motivated into having a closer look at ABA partly because the therapeutic aspects of intervention for autism were dominated by this bit of psychology and by an Ipsos Reid poll conducted in Canada for FEATBC. That poll insisted repeatedly that ABA was ‘scientific’, so naturally the intervention was steeped in the scientific method. Skeptical me said – really? And six months later having waded though swathes of the Journal of Applied Behavior Analysis and the Journal of Experimental Analysis of Behavior and the writings of a number of behaviorist luminaries, I concluded, in a few thousand words, that the trouble with a therapy framed around a naïve inductivism operating in a form of Jamesian Pragmatism is that it’s a long way from what a scientist would recognise as the scientific method. This was one very weird form of Science bearing at best only a very superficial likeness and really quite removed in its experimental set up from the scientific method. Now, I am not an expert in this, but Professor John A Mills, formerly of the University of Saskatchewan is and he said quite a few things about the pretensions of behaviorism among which:

“Logically, one can detect four flaws in the reasoning of behavior modifiers. First, they tend to confuse mere associative with causal relationships. Second, they are guilty of the inductive fallacy. Third, they fail to distinguish between necessary and sufficient causes. Fourth, they make the error of denying the antecedent.” [p 170]

In my view, behaviorism does for psychology what Aristotle did for Science – gets you the four element model of the universe - based on careful observation. The more I read about this psychological oddity behaviorism, the more fascinating it got. Far from the promised evidence- based, steeped in science intervention, the empirical basis, such as it is rests on limited animal studies and the philosophical basis of the rationale for extending the animal studies to humans rests on trendy atheism, circa 1950. Jack Michael, the behaviorist noted for resurrecting ‘Verbal Behavior’ following Chomsky’s devastating critique admitted quite openly that the principles of operant conditioning were never tested on animals more sophisticated than one species of rat and one species of pigeon.

“First, the vigorous applied approach called behavior modification developed without the benefit of any appreciable laboratory research with humans. At the beginning (the late fifties and early sixties), it was a direct attempt to use operant, animal-laboratory methods and concepts to alter socially important human behavior. The relevance of these concepts to human behavior was taken for granted by the behavior modifiers, as it was in Skinner's

Science and Human Behavior (1953),”

In 1950 and in most Humanities department since, to be a Deist, and to espouse those values was deemed simply incompatible with intelligent discourse. The intelligentsia were atheists. Mankind operated in the same evolutionary manner as other species and inconvenient attributes such as altruism or creativity would be explained eventually. There was no such thing as personal responsibility because that implied free will and that belonged to an antiquated religious past. In this climate, behaviourism looked perfectly at home and its offspring, ABA wouldn’t have raised an eyebrow. I wonder how many therapists tell their clients that doing ABA Monday to Friday and synagogue/church on Saturday/Sunday is a contradiction in terms?

“ If the behavior under investigation is hurting the person, hurting others, or is in some way ineffective, behaviorists encourage, model, teach, and provide incentives for new more adaptive behaviors.”

In other words, practically any behavior can be deemed worthy of changing and since behaviorists do not think that the person is important, merely the environment their reasons for a behavior happening are restricted a priori (and therefore unscientifically) to a fixed and fairly short laundry list. For a behaviorist what people do is usually to get something, avoid something, gain attention or escape from something. So paying attention to the attributes of the actual person in front of them doesn’t happen and because of that they are more than capable of replacing adaptive behaviours with others deemed more socially acceptable but in reality more obstructive to the autistic person’s ability to learn. Diminishing a person’s capacity to cope with their environment surely undermines their learning. Take gaze avoidance, long known to be quite important in improving cognitive processing of auditory data in children. What do ABA therapists do with that?– insist on eye contact as the first step in ‘learning how to learn’ and call upon a species of group think, ‘social validity’ as the rationale for doing so.

“ABA has the greatest research base so far”.

Yes, but the quality is terrible. 500 or so single subject research studies don’t amount to much since they fail to control for so many variables. My take on this as I’ve written elsewhere is that the results from interventions depend entirely on the attributes of the child, not the intervention. When the results suggest otherwise, it’s a pretty clear indication that group assignment wasn’t random.

“[O Ivar Lovaas] ..was one of the first professionals to suggest that autistic children could learn and should not be routinely insitutionalised.”

OK, this article has now descended into dishonesty on a scale not usually offered to parents by other than snake oil salesmen. Have these behaviorists not read Kanner? Is there any indication whatsoever that these children somehow cannot learn? Of all the lies proffered to parents, this is one of the most destructive and these are supposed ‘therapists’. They need immediate remediation. As for re-writing the history of Ivar Lovaas’, his reasons for treating autistic children had nothing to do with altruism and everything to do with his language research. Rick and Pam went straight back to the institution when Lovaas had finished with them.

“ He wrote a pivotal 1987 report claiming that roughly 40% of the children in one of his programs ( 9 out of 19) became “indistinguishable from their peers”

Victoria Shea wrote an equally pivotal paper debunking that claim. She took the time to read McEachin’s PhD thesis and lo and behold, only one child scored in the normal range on all the tests. No one took any data from their teachers, though their input is frequently claimed. This reminds me of Jane Gross’s article on autistic childrens’ troubles in school post treatment. While the parents called them ‘recovered’ apart from some trifling social problems, it was readily apparent that their peers thought quite otherwise.

“ the question is not about the ethics of ABA, but about the ethics of some professionals who provide ABA services”

When an appeal to ethics or efficacy rests not on the therapy but on the therapist, one should be very skeptical. It seems to me that ABA proponents are far too ready to blame all the failures (both ethics and efficacy) on the therapist and all the successes on the therapy. The ethical confound of behavioral intervention is that the method has no foundation, scientific or otherwise and therefore unproven methods are being used on very small children. The neat trick is that in riding roughshod over hyperlexic preferences and/or artificially manipulating the error rate for someone who learns only by making every mistake in the book (it’s a kind of learning by learning where the boundaries are) - if that leads to damage, diminished capacity for learning or whatever, the therapy is never to blame – it’s the therapist. Is that the dream therapeutic environment or what? It works! – thank the Goddess for the therapy! It doesn’t work! – it’s the therapist! Aversives are also unethical but that is only one part of the ethical challenges of ABA and not the major one in my view.

“ ABA therapists use a variety of teaching strategies, including prompting, cueing, modeling, shaping and chaining...... Yet many people think the only ABA teaching method is Discrete Trial Training or DTT for short.”

Except for modeling, I thought that the rest were very much a part of DTT. Nobody ever questions that DTT, the foundational platform for ABA is really the Skinner box in action for humans. The minimalist environment is not there to save the client from unnecessary distraction. It’s there to prevent the client from exhibiting any behaviour but the one under the set stimulus control – the ‘lawful’ behaviour. But parents and beginning therapists will be told that this is the key to learning for ASD children. The ABA industry did try to cloak this learning environment in scientific garb by maintaining that ASD children had a particular problem with ‘stimulus over-selectivity’. That gave them a rationale for breaking things down into very small steps, which had the bonus that each tiny step could be reinforced. This manoeuvre is called shaping and there’s a bit of chaining in there as well usually. You can get a pigeon to do a figure of eight with these methods. Should you get human children to do the same? There is no evidence that overselectivity is the case for ASD children and some that it definitely is not the case. You don’t have to be ASD to have a problem with this. So, since there’s no empirical basis for these methods why are they used at all? Good question and the possible answer I can come up with is that psychology having left behaviorism to history’s wastebasket didn’t have a problem leaving ASD children in the same wastebasket. There was even a bonus. Psychology, even now, is considered a social science and the hallmark of the social sciences is the ‘schools of thought phenomenon’. In that schema several competing paradigms can happily coexist, each with their own theory, arcane language, praxis and adherents. Behaviorists still inhabit a chapter of the Psychological Society and still have to be accommodated professionally. So they were left the hard cases – the mentally ill and the developmentally delayed. Through the sixties and seventies, their work with the mentally ill, though heavily criticized, was allowed to continue. What brought that branch of behavior modification to a halt was not the criticism but the closure of large institutions. For those who fondly believe that the APA or the APS are going to make a real effort to reform the Judge Rotenburg Centre in line with its own policies, I would point to the history, which says that is unlikely to happen though the appearance of an attempt may occur if they can be embarrassed into it.

Some critics say the use of drills and rewards makes children in ABA programs robotic.....The problem may also be due to a lack of skills generalization.”

Logically, or so it seems to me, if the learning is so artificial that it makes no sense whatsoever, then nothing has been learnt at all that is in any way useful. So learning is equivalent to generalization or lack of generalization indicates that nothing has been learnt. Once again, when this question arises, we have the ready explanation that this is a therapist ‘gone bad’.

“ basic skills of imitating, attending, learning how to learn and liking learning”

With the greatest respect for Dr Kristina Chew, this is ABA basic speak. How does one assess ‘learning how to learn’ or ‘liking learning’ for that matter? Who says and where is the evidence that autistic children learn or can learn well through imitation? Could a child who does learn readily in this way be considered autistic at all? Because a typically developing child learns this way should we assume that this is a missing developmental step and supplying the lacking skill will remediate the problem? Perhaps it is a very inefficient way for autistic children to learn. One thing that all current interventions have in common – none are based on what we know of the perceptual styles of autistic children, including their manner of ‘attending’. In fact the NRC report of 2001 was highly critical of the ‘ne’er the twain shall meet’ gulf between research and intervention.

Dian Keller.....”she is in the fourth grade at a regular school with no pull outs.... very verbal, happy and healthy.”

I draw attention to this because the phenomenon is pervasive. It’s not lying, exactly – just stretching the truth in what the parent believes is a good cause would be my guess. The ‘no pull outs’ and ‘happy and healthy’ state of her daughter doesn’t quite gel with her earlier statement “whose now 10 year old daughter sees ABA professionals weekly in addition to follow-up therapy at home.” This isn’t all that blatant compared to say Kit Weintraub efforts in that direction, but it doesn’t persuade me that she’s quite as healthy as advertised.

“Where a non-invasive desensitization program procedure could open up a wealth of choices.....The child’s world is larger; he has fewer things to be stressed about and more things to enjoy”.

Earlier I broached the idea that aversives were for me at least, not the core ethical issue with ABA. I think it’s the lack of an acceptable empirical foundation for its practices that I find unethical and more unethical to subject a small child to ‘desensitization’ procedures of dubious and unproven efficacy in the name of ‘choices’ but not the child’s choices, obviously. Where exactly is the evidence that ABA offers ‘desensitisation’? I had thought that ABA poured scorn and vitriol on desensitization procedures employed under the aegis of occupational therapists. What if it’s merely training a small child to ignore discomfort for your benefit? In which case, what have you taught the child apart from expecting the child to learn in less than ideal conditions. Maybe the take home message indelibly etched on that child’s mind is that they don’t matter and that external appearance but not the reality is of prime importance. Realistically, this child now has a lot more to be stressed about and fewer things he will be able to enjoy because there is no proof that a few M & Ms can overcome any degree of tactile defensiveness. The other lesson in this is teaching not just the child but also the parents very poor problem solving strategies. Seems like the waste of a teachable moment to me. Here the child learns only that people are shallow. They are but he or she could also learn to approach ‘appropriate’ clothing systematically. One can never learn too much about the necessity for camouflage. However, it does not have to be uncomfortable camouflage.

“Certain ABA techniques such as modeling, visual schedules and step by step skill acquisition are particularly useful, since autistic children tend to be weak in executive functioning areas like planning, organization and problem solving and strong in visual learning.”

Quite possibly none of that list is accurate except the last point about visual learning and that would not be universal. Fred Volkmar wrote a really good review of what’s happening in autism and he made the point that the attribution of deficits to autism like those above tend to be based on very little data. Claims like these need to be checked. The chapter on Learning in Autism available online would be good checking source as well as anything that Dr Morton Ann Gernsbacher has on her site. It is also noteworthy that ABA is incapable of generating any of that list. That style of research doesn’t fit their paradigm. Professor Mills characterized it as ‘corrosively constricted’.

The last point made was that ABA has evolved and learnt new child-focused ways of doing things. If by evolved, they mean co-opting the parental handbook and borrowing freely from TEACCH, Floortime and NET to fit in with standard speech language pathology praxis, then they have indeed evolved but it’s a Lamarckian rather than Darwinian form of evolution. What they have done is effectively obliterated opportunities for operant conditioning to occur and I think that is a very good thing. I’m with Deci and Ryan – rewards can seriously mess with learning, albeit only to a point. Lisa Jo Rudy of autismabout.com made a comment that the good therapists are very much alike in how they do things regardless of the label on the lapel and that’s a comfort. The other source of comfort is “The Myth of the First Three Years’, which should be required reading for those expounding the short ‘window of opportunity’ drivel. Brains are malleable and stay that way for far longer than folks are implying. Interestingly the kinds of things for which a window of opportunity may exist are vision and grammar (up to puberty).

In the scheme of things, autistic advocates could make a push for just one thing intervention wise – ‘evidence please’. That applies to every intervention out there not just ABA and we should be a lot more insistent about it than we have been. This and that ‘treatment’ ™ are usually nothing more than commodified common sense that someone thinks they can sell at a premium. So the only way to prod them into doing what might be some good is to be highly critical of their foundations and insistent that they do incorporate what is known.

Just call me Barbra - The Streisand Effect

2008-04-08T07:03:00.000-07:00

Orac has a really good letter into David Kirby and Dan Olmsted, two literary worthies of the mercury equals autism confederacy, concerning the attack on free speech implicit in Cliff Shoemaker's subpoena issued to Kathleen Seidel. As bloggers and otherwise free wheeling members of the cyber-commentariat, such tactics are not welcome and should be vigorously dealt with.

It will be interesting to see whether Kirby and/or Olmsted react to this. There is a precedent for co-operation. All sides came together to protest the ill-conceived Ransom Notes Campaign. Here is the same kind of thing - an obviously self-serving action that will have deleterious effects beyond the narrow concerns of the Sykes and Shoemaker. So far, the reaction from Lenny and Co of the yahoo site, "Evidence of Harm" (EOH) has been predictable, but not entirely. One EOH member cottoned that Kirby, Olmsted, Shoemaker and a great many others could be similarly subpoenaed and with far greater chances of success that Kathleen Seidel. She was promptly labelled a 'pharma shill'. That may not last, if Lenny, ex-journalist that he is, gives it a bit of thought. Not, mind you that Lenny is consistently thoughtful about things - but one never knows. We'll see. In the meantime do read Orac's letter and circulate it widely if you feel so inclined.

Liz Ditz of "I Speak of Dreams" is maintaining a list of bloggers writing about this issue, which should make somebody's honours thesis on the 'Streisand Effect" considerably easier.

Update: Not a bad article in the press, aptly titled:

What a Web of actional links we can weave at:

http://www.nashuatelegraph.com/apps/pbcs.dll/article?AID=/20080409/NEWS01/933585002

A Sad Day for the Academy

2008-01-23T11:08:00.000-08:00

Dr Nancy Murphy

Chair

Executive Committee

Council on Children with Disabilities

American Academy of Pediatrics

Dear Dr Murphy

I am writing about some concerns I have with the Academy's position statement on the management of children with autism spectrum diagnoses (copy attached). I have thought long and hard about voicing this position. Obviously the Academy and your Committee mean well and I would not like this to be taken as mere quibbling. My concerns are I think justified in the light of what happened when the New York State Department of Health Guidelines endorsed a particular form of management on less than adequate grounds. Subsequently, the report was quoted by all and sundry to the great detriment of developments in the field. The Academy's paper is similarly flawed and if the inaccuracies in it are properly dealt with perhaps it will not be used as ammunition to mandate one form of treatment for all autistic children, a prospect that parents of children like mine can only view with misgiving.

Yours sincerely....

A Sad Day for the Academy

Myers and Johnson’s ‘Management of Children with Autism Spectrum Disorders’ [1] published under the aegis of the American Academy of Paediatrics, seeks to give guidance to paediatricians in the role of primary care physician for ASD children and their families. The aim is thus lofty and the article timely, given the increased attention being paid to ASD research and treatment in many countries. The article is not as useful as it could have been. Myers and Johnson have painted a somewhat rosy picture of the management process as a professional partnership between the paediatrician on one hand and the professional behavior analyst on the other with something of a glib nod to the contribution of other strategies and other specialties. In so doing, Myers and Johnson have gone to considerable pains to smooth out the many wrinkles in the literature concerning ASD management, putting this article out of sync with at least two recent major reviews. Noted autism researcher Fred Volkmar conducted a thorough review of the field in 2004 [2] and observed that autism research is almost characterized by bold assumptions based on scanty supporting data. Among its many conclusions, the National Research Council, 2001 report “Educating Children with Autism”) (NRC) [3] pointed to the perennial problem of the fragmented nature of management of autistic spectrum disorder in the following terms.

“Although several of these literatures [developmental, neurological, behavioral, epidemiological] appear to be internally well integrated, there is remarkably little integration across literatures. For example, the information from the literature describing characteristics of children with autistic spectrum disorders is often not linked to treatment programs. Likewise, the developmental literature, which is descriptive in nature, has only rarely been integrated into individual intervention practice research, which tends to be behaviorally oriented”

The paper by Myers and Johnson perpetuates this miserable state of affairs, without there being the least necessity for it. Paediatricians, one would think, can manage to integrate incomplete data of variable reliability quite well and in the interests of accuracy should have been given the opportunity. There are several instances in this paper, where accuracy has been sidelined in favour of the maintenance of an illusion of progressive uniformity.

Starting with the commentary on the effectiveness of various therapies, one wonders how it was that the authors came to the conclusion that Applied Behavior Analysis (ABA) was the only game in town when the NRC came to the far more nuanced conclusion that, given the heterogeneous nature of the ASD spectrum, not one therapy was appropriate for everyone or at every stage of development. It is not as if the authors had access to more and more compelling research than the NRC.

The history of the effectiveness of ABA and associated techniques exemplifies the self-correcting nature of good Science. As with a great many advances, the initial ABA study, Lovaas 1987 held out great promise. Of an admittedly small sample, 47% emerged as best outcome, that is, mainstream educational placement and normal IQ after 2 years intensive treatment. But, contrary to popular legend this group was not “indistinguishable from their peers” according to Shea’s analysis [4] (not referenced by Myers and Johnson), of McEachin’s PhD thesis, which documented the results of numerous tests conducted in the follow up study [5]. Lovaas 1987 wasn’t a truly scientific study since the samples were not randomly assigned to control and experimental groups and subsequently there were dark mutterings of stacking the deck or populating the experimental group with children likely to do well. There have been many attempts since to ‘replicate’ Lovaas, none entirely successful. Though there is no doubt that some children do well in ABA, the 47% best outcome remains elusive. The one and only scientific study, Smith Groen Wynn 2000, – randomised assignment and controlled, produced a mere 13% best outcome with no differences on language acquisition and social parameters between experimental and control groups[6]. One attempted replication, Sallows and Graupner 2005 turned up with the control group outperforming the experimental group, which suggests that the type of intervention may be a random factor [7]. A small review of Eaves and Ho, which I note is also not among the references concluded that the actual intervention may not be related to the outcome, which seems counter intuitive but is supported by a very recent study done in the UK. Howlin et al 2007, also found no difference in outcomes between an intensive ABA program and nursery provision (basically a mix of services). This study is significant but is not among the references. The general conclusion of the science, such as it is, is not that ABA per se is so effective or that it is indisputably more effective than anything else out there. Even behaviour analysts are pointing to the ‘bi-modal’ distribution of results, which really says that all the good results usually belong to a handful of participants and it literally is the ‘luck of the draw’ (if one was used at all) which children went where. Science, in the long run generally gets it right.

Some of the citations used as part of the evidence base are not quite accurate. Reference is made to Birnbrauer and Leach 1996 but not to their ten-year follow up (Birnbrauer Leach 2006) [8], which advised that the gains initially reported in their experimental group did not last. Howard et al’s study is referenced but without mentioning what one behaviorist [9] referred to as serious methodological flaws such that:

“Utilizing a pretest-posttest nonequivalent groups design, the Howard, Sparkman, Cohen, Green, and Stanislaw (2005) study failed to demonstrate the superiority of early intensive behavioral treatment over that provided by special day classes in public schools”

Incidentally, in the Howard et al study, there were two children whose behaviour deteriorated so badly that they were withdrawn from the experimental group and the reason given was their very young age – 2, the age at which the AAP is recommending intensive therapy.

By taking a circumscribed view of the field the authors have managed to overlook some factors in the management of ASD that others regard as central. Sensory hypersensitivities are dismissed as not always relevant to ASD, though Dr Temple Grandin, scientist and autistic has spent years at numerous conferences and in her writings emphasising the overwhelming relationship between what looks to be mal-adaptive behaviour and the effects of the sensory environment. Dr Stephen Shore, autistic and musicologist has done the same. Strange in this day and age but it does not appear that the authors consulted with anyone on the autistic spectrum even though there is no lack of candidates ready, willing and able to shed a bit of light on the management of ASD, which for them is exceedingly relevant to their lives. There is also no dearth of reference points to the very significant differences between tantrum throwing and meltdowns due to sensory overload. The sole mention of it in this paper is to a conflation of occupational therapy and the failure of sensory integration therapy.

This conflation has the unfortunate consequence of falsely equating efficacy of sensory integration therapy with the efficacy of occupational therapy in general and the portrayal of occupational therapy as not terribly important in the scheme of things therapeutic. The fact that sensory integration therapy speaks more of hope rather than achievement in no way reflects on the real and utterly necessary intervention of trained occupational therapists in competently addressing the many manifestations of apraxia in ASD folk. I leave it to the colleges of occupational therapists to protest the misrepresentation of their importance in intervention. I would like to draw the attention of the AAP to the academic credentials of the average BCBA certified behaviour analyst. A thorough grounding in anatomy, physiology, kinesiology and child development theory does not appear to be among them. None is actually mandatory though behaviour therapists routinely undertake the tasks more usually reserved for speech language therapists and occupational therapists with other populations. This is a serious issue and if the authors wish to recommend ABA therapy without qualification, how do they get around the very visible lack of an evidence base for ABA intervention where apraxia is a significant problem? The lack of any grounding in the life sciences is also of concern in other aspects of behavioural intervention.

Also buried in the paper, this time with the pop psychology of Relationship Development Intervention, is a method of intervening with the parents rather than the children, Responsive Teaching with a note that there is little scientific evidence of efficacy. This is actually not true. Randomised controlled trials (RCT) in autism research are a rarity. Hence the RCT of an intervention targeted at parents by Aldred et al is all the more valuable, [10] demonstrating the efficacy of this approach. So many of the behaviours exhibited that parent wish their children wouldn’t are simply the products of frustration born of poor communication. Training parents to be more aware of the communicative efforts of their children surely has to be one of the best tools in the intervention arsenal to increase effective communication and decrease maladaptive behaviours regardless of whatever other interventions are used.

The authors refer frequently to the necessity of a functional behavioural assessment to guide the treatment of aberrant behaviours, a very sensible approach on the face of it. But this assessment is to be conducted under the behaviourist stricture that behaviour is usually to get something, avoid something, gain attention or escape from something. The authors point approvingly to the rigorous empirical nature of behavioural assessment. I would suggest that paediatricians resist the testimonials and peruse the results of such assessments to be found in the literature, ranging from the comical to the banal. Tang et al conducted 43 30-minute observations to conclude that a child’s ‘stereotypical’ ear covering happened only when another child was screaming. [11] O’Reilly of University College, Dublin concluded that the self injurious behaviour of a developmentally disabled youngster (ear poking), which only ever happened during attacks of otitis media was probably related to escape from ambient noise. [12] The reliance on a fixed range of external factors as the major determinants of behaviour together with ignorance of matters biological can be a recipe for tragedy. The staff of the Judge Rotenburg Centre, a bastion of unreconstructed behaviourism, interpreted the refusal of a non-verbal student to eat as an indication of bad behaviour. As the article in Mother Jones [13] stated:

“Linda refused to eat. Linda could not speak, and the staff treated her actions as misbehaviors. Between 3:52 p.m. and 8 p.m., staffers punished her with 13 spatula spankings, 29 finger pinches, 14 muscle squeezes, and 5 forced inhalings of ammonia. It turned out that Linda had a perforated stomach. She died on the operating table at 1:45 a.m.”

There can be a more complicated aetiology for a great many behaviours that do not fit well into the behaviourist canon.

Myers and Johnson’s article purports to give paediatricians at least a starting body of references in the management of ASDs. Even CAM rates a mention because of the pervasive use of such therapies with ASD children. If the authors’ purpose was primarily educational, why is there not one word or reference to the growing and important literature dealing with autistic perception or learning? The omission points directly to the complaint of the NRC. Interventions are not linked to the broad research literature and they should be. What point is there in teaching eye contact if for that particular autistic child the face is such an intimidating landscape that he or she can look at you or understand what you are saying, but not both simultaneously? [14] Surely paediatricians might take some interest in the research pointing out that as many as one third of autistic children may be falsely labelled mentally retarded and it all depends on what test is used. [15]. This branch of research is not yet extensive, but there are some very good basic references that could be suggested to interested AAP members. “Autistic Learning” a book chapter and comprehensive review of research which should inform the helping professions more widely, is available online at:

http://psych.wisc.edu/lang/pdf/Dawson_AutisticLearning.pdf

‘Management of Children with Autism Spectrum’ is not as useful in guiding the management of ASD as it could have been, because it seems that a commitment to ‘evidence-based’ is something of a rhetorical device. Michele Dawson, researcher and autistic herself, remarked in a recent interview that:

"Accurate information is always good for autistic people. It might not be good for advocates, it might not be good for lawyers, it might not be good for lobby groups, it might not be good for various vested interests, it might not even be good for researchers, it might not be good for funding bodies, but it is always good for autistic people."

I daresay that it would also be good for paediatricians.

REFERENCES

1. Scott M. Myers, Chris Plauché Johnson the Council on Children With Disabilities
Management of Children With Autism Spectrum Disorders
Pediatrics, Oct 2007; doi:10.1542/peds.2007-2362

2. Volkmar FR, Lord C, Bailey A, Schultz RT, Klin A., Autism and pervasive developmental disorders, J Child Psychol Psychiatry. 2004 Jan;45(1):135-70.

3. Catherine Lord and James P. McGee, Editors, Educating Children with Autism, Committee on Educational Interventions for Children with Autism, Division of Behavioral and Social Sciences and Education, National Research Council, National Academy Press, Washington, DC

4. Shea, Victoria (2004), "A perspective on the research literature related to early intensive behavioral intervention (Lovaas) for young children with autism", Autism 8 (4): 349-367

5. McEachin JJ, Smith T, Lovaas OI. Long-term outcome for children with autism who received early intensive behavioral treatment. Am J Ment Retard. 1993;97 :359 –372

6. Smith T, Groen AD, Wynne JW. Randomized trial of intensive early intervention for children with pervasive developmental disorder. Am J Ment Retard. 2000;105:269–285

7. Sallows GO, Graupner TD. Intensive behavioral treatment for children with autism: four-year outcome and predictors. Am J Ment Retard. 2005;110 :417 –438

8. Birnbrauer J.S., & Leach, D.J. (2006, June). The Murdoch Early Intervention Program at 10 years. Association for Behavior Analysis Annual Conference abstract. Atlanta, GA

9. Schoneberger, T. (2006), EIBT research after Lovaas (1987): A tale of two studies, The Journal of Speech-Language Pathology and Applied Behavior Analysis 1: 207-217

10 Aldred, C., Green, J. & Adams, C. (2004) A new social communication intervention for children with autism: a pilot randomised controlled treatment study suggesting effectiveness. Journal of Child Psychology and Psychiatry, 45, 1420–1430.

11. Jung-Chang Tang et al. Functional analysis of stereotypical ear covering in a child with autism: Implications for assessment and treatment, Journal of Applied Behavior Analysis, 33, 559–572.

12. O’Reilly, M. F. Functional analysis of episodic self-injury correlated with recurrent otitis media. J Appl Behav Anal. 1997 Spring; 30(1): 165–167.

13. Jennifer Gonnerman, School of Shock, Mother Jones August 20, 2007.

http://www.motherjones.com/news/feature/2007/09/school_of_shock_index.html

14. Dalton, K.M., Nacewicz, B.M., Johnstone, T., Schaefer, H.S., Gernsbacher, A., Goldsmith H.H., Alexander, A.L. & Davidson, R.J. Gaze-fixation and the neural circuitry of face processing in autism. (2005). Nature Neuroscience, 8, 519-526.

15. Michelle Dawson, Isabelle Soulières, Morton Ann Gernsbacher, Laurent Mottron (2007) The Level and Nature of Autistic Intelligence Psychological Science 18 (8), 657–662.

Research Priorities

2008-01-03T14:25:00.000-08:00

The National Research Council, 2001 review of developments in autism research titled “Educating Children with Autism” noted the following:

“Although several of these literatures [developmental, neurological, behavioral, epidemiological] appear to be internally well integrated, there is remarkably little integration across literatures. For example, the information from the literature describing characteristics of children with autistic spectrum disorders is often not linked to treatment programs. Likewise, the developmental literature, which is descriptive in nature, has only rarely been integrated into individual intervention practice research, which tends to be behaviorally oriented”

Since 2001 there has been nothing in the literature to suggest that the intervention research community has taken a cooperative turn and adorned their efforts with results from areas in psychology other than their own. Factionalism remains rife and for good reason. Not one of the interventions on offer to educate autistic children has a sound theoretical and conceptual framework based on replicable scientific experimentation such that the results remain undisputed by the research community as a whole. Most (more likely all) are essentially based on some plausible concept that started as somebody’s bright idea and never developed empirical legs further. That applies to applied behavioral analytic approaches as much as any other. Professor John Mill’s scholarly tome, “Control - A History of Behavioral Psychology” carefully elaborates the scientific pretensions of the field [1]. In short, as far as research directions in autism are concerned, there are PhD theses aplenty in simply examining the lack of empirical foundation of any of the interventions currently on offer.

I propose that there is a far more urgent necessity to address a practice in the field that is currently used in practically all interventions no matter the label, has an enormous potential to inflict damage considering the very young ages at which intervention is now targeted and is based on no empirical foundation whatsoever. It is practically axiomatic in the field of special education and foundational in behavior analytic approaches that all teaching tasks are broken down into discrete steps, at least initially, and carefully delivered to the student in a highly controlled step-wise manner. In behavior analytic terms this allows for controlled reinforcement at each step of the process. The justification for this is that autistic students have a problem with over-selectivity, that is, they focus on details at the expense of the larger picture and irrelevant details at that. However, the literature, such as it is, does not support that position at all and there is data, both research and anecdotal that suggest the universality of this approach is not warranted.

Most studies on stimulus over-selectivity have found some people with autism who have not responded overselectively (and yet have all/most of the above features of autism). It has also been found that many people without disabilities show evidence of overselective responding but none of the features of autism (e.g., Koegel & Wilhelm, 1973 [2]; Lovaas & Schreibman, 1971[3]). Over-selectivity is not a consistent feature of autism. Anecdotally, it appears that autistic children can and do learn very well in the absence of intervention as the following parental accounts relate, thus negating an often used rationale of interventions that autistic children (all of them) cannot learn at all without such careful scaffolding.

“Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts. She spelled words with refrigerator magnets long before ABA therapy. She plays the piano almost in spite of ABA therapy. She taught herself to read without the use of ABA therapy. Adding and subtracting. She was obsessed with numbers and sequences of numbers before ABA.” [4]

“Between 18 months and 2 years old Jaden started doing some pretty amazing things. Like just about every kid his age, he had one of those foam alphabets that fit inside a foam frame. One day on a whim Debi took the frame away and left him with just a jumbled pile of letters. Jaden proceeded to put the letters in order just as fast as we would do it the very first time.” [5]

A second research effort suggests that rather than being limited to a detail oriented approach to learning it may well be that autistics have the option of using a top down as well as a bottom up approach. On perception tasks involving categorization, Soulieres et al 2007 [6], concluded that the influence of categories may be optional in autistics, while being mandatory in non-autistics.

The evidence behind what appears to be a very sensible approach to learning in autistic individuals is not what it should be and there are plentiful indicators that the appearance of sense could be misleading. I would like to see some real dollars spent on this one area. It really is time that ‘evidence-based’ had some basis in fact. Consider that it is generally recognized that pattern recognition is a relative strength for autistic spectrum folks and that the piecemeal dissemination of material effectively deprives those folks of access to sufficient material to access the pattern. Ideally, it would be of considerable benefit if research could identify for the child whether or not their learning style is congruent with a step by step approach before that approach is implemented.

References

[1] Mills, John A., Control: A History of Behavioral Psychology, Paperback Edition, New York University Press 2000
[2] Koegel & Wilhelm, Selective Responding to the Components of Multiple Visual Cues by Autistic Children. Journal of Experimental Child Psychology, 15, 3, 442-53, Jun 73
[3] Lovaas & Schreibman, , Overselective response to social stimuli by autistic children Behav Res Ther. 1971 Nov;9(4):305-10.
[4] Comment from a parent Jez Rourke to the topic “What I think about ABA and Recovery” on the Autism Vox website blog. Web reference: http://www.autismvox.com/what-i-think-about-aba-and-recovery/#comment-73433
[5] Mike Lake, MP - Canadian House of Commons 39th Parliament, 1st session edited Hansard Number 087
[6] Soulières, I., Mottron, L., Saumier, D., Larochelle, S., 2007. Atypical categorical perception in autism: Autonomy of discrimination? J. Autism Dev. Dis. 37, 481-90.

Advertising in Wonderland

2007-12-07T13:14:00.000-08:00

My post to Dr Grossman

Dear Dr Grossman

I am writing with regard to your Ransom Notes campaign. To be honest I can't quite get my head around the level of stupidity, ignorance, lack of taste, lack of intelligence, lack of a moral compass, bigotry, liking for sensationalism etc shown so clearly in this misguided initiative. I could go on for pages. It is apalling and for the medical profession to be involved, disturbing. Remember the primer of the practice of Medicine - First Do No Harm? This cracked gem is just about certain to undo the efforts of thousands in trying to reduce stigma and to enable the possibility of a quality life for our nearest and dearest who, unfortunately, by virtue of their label are going to affected adversely by this return to mediaeval barbarism.

I assume that this campaign is supposed to encourage the population to seek help early for their children. Consider if you will. Would a reasonable person allow their children anywhere near the idiots responsible for this retrograde lunacy?

Sincerely yours

Ethics: Nil - Science: Bad - Outcomes: Poor

2007-10-19T08:55:00.000-07:00

MacFabe et al’s paper “Neurobiological effects of intraventricular propionic acid in rats: Possible role of short chain fatty acids on the pathogenesis and characteristics of autism spectrum disorders” concluded the following:

“We propose that some types of autism may be partial forms of genetically inherited or acquired disorders involving altered PPA metabolism. Thus, intraventricular administration of PPA in rats may provide a means to model some aspects of human ASD in rats.”

The form of this research is peculiar. The paper cites 190 references. Not one refers to any data with the actual levels of PPA in stool, urine, serum or CSF in autistic children. Instead, the research moves immediately to the deaths of 74 rats and a sophisticated appraisal of their demise. Naturally the exercise involves the gainful employment of a number of psychologists and the acquisition of considerable expertise in histochemistry, brain imaging and other useful techniques. One might speculate that the reason for this omission – an actual and factual basis for the research, might be that a negative or ambivalent result could seriously undermine the rationale of the experiment in the minds of potential funders.

The authors lean heavily on the heterogeneous nature of autism pointing to the all-purpose ‘some children with ASD’ without in any way specifying the characteristics of the sub-group to which their thesis might be relevant. In politics this would be called plausible deniability. In this paper it takes the form of assembling a pastiche of vague resemblances between propionic acidemia and some aspects of ASDs with blurring of the obvious differences especially at points that are crucial to the authors’ thesis.

The most obvious example is the descriptor of ASD as a movement disorder citing an opinion piece which uses gait as the measure of dysfunctional movement. In those affected with inborn errors of PPA metabolism the movement disorder takes a very defined, involuntary and severe form – choreoathetosis, which in no way is equivalent to the ataxia of gait movement in ASD. I refer the reader to Leary and Hill 1996 for the definitive description of ataxia as it affects folks on the autistic spectrum. In the same vein, gastrointestinal disturbances among the autistic population are quite cavalierly equated with the severe vomiting evident among those with propionic acidemia, which has hitherto, not been mentioned as being relevant to the ASD population. Neither are autistics or any subgroup thereof known to have such a complete loss of appetite as to require feeding tubes, a clinical feature of propionic acidemia.

The list of symptoms associated with errors of propionic acid metabolism is as follows:

It takes more than a little academic spandex to see autism in this list. The logical conclusion of such an equivalence would be that all persons with propionic acidemia would be classified as autistic and the most severely autistic at that. The literature makes no mention of autism in relation to this population.

The second pillar of the experimental effort is the use of the behaviour of rats, injected with propionic acid directly into the brain as proof of the link between autism and inborn errors of propionic acid metabolism. The flaws in this argument are legion. The exposure limit for humans to propionic acid, a chemical labelled corrosive, is 10 PPM. This is set to guard against damage to skin and mucosal tissue. It was not set for the ‘direct injection into the brain’ scenario. The low dose the rat got in each injection was around this level and the high dose around five times that level. Most of the paper and its conclusions dwell on the response of the rat to these injections, with much made of the inflammatory response, the seizures and so on. Inject a rat with a corrosive substance, directly into the brain, at a level known to cause damage to human skin and what else could one expect?

There are two cogent reasons to reject the author’s interpretation of the observable movement of the mice following PPA injection. Firstly, who is to say that the movements observed are not characteristic of choreoathetosis in rats? No compelling reason is given. Secondly, the cerebral organization of rats and men differs markedly and not just in size. The authors noted that cell densities are greater in autistic populations but failed to mention that the organizing structure, the mini-column varies from species to species. Given the differing structural arrangements, the validity of rat models for complex multi-factorial behaviours such as social interactions or even the presumably less complex ‘movement behaviour’ is highly questionable. The model is extremely weak and as such, the authors have made the basic error of attempting to validate a hypothesis through the use of a very poor analogue, a logical impossibility. In point of fact, what these authors have attempted to do points to a wider concern in certain sections of brain research.

I have no quarrel with animal studies per se. The 2007 Nobel Prize for Medicine was given to Mario Capecchi, Martin Evans and Oliver Smithies for their pioneering development of knockout gene technology. That technology led to the development of over 500 different rodent models of various disorders having a genetic basis. The expected and indeed valid utility of these models lies in being able to assess the physiological effects of genetic manipulation. But this is not what MacFabe and any number of others are doing. They have conceived the entirely invalid notion of assuming an etiology, that is, assuming the genetic aberration and then using some aspect of animal behaviour to validate their notions. This seems to get the method exactly backwards – using the behaviour to finger the gene(s) and using behaviour from animal populations that, cognitively at any rate, we have little in common. Cohen sums up the problems of this approach as follow:

“To speak of "drug cravings" in animal addicts made physiologically dependent on drugs, to speak of animals forced to drink alcohol as "being high," to consider an "opponent-process theory of acquired motivation" as having anything to do with the etiology of drug addiction, to refer to monkeys taught learned helplessness as being "depressed," to conclude that primates undergoing deprivation are "schizophrenic," and to label animals traumatized in laboratories as "neurotic," is to disdain epistemology, indulge in self-serving fantasy, demean proper scientific exploration, obfuscate the significance of empirical facts, and manipulate, mislead, and delude everyone.”

What applies to other ‘isms’ of psychology applies equally well to autism. Principles of model validation in this area require three things apparently; face validity – does it look like what the model stands for, construct validity – a common etiology really and predictive validity, which is self explanatory. MacFabe’s work fails on all three counts. There is no particular reason to believe that the results of this work are anything other than what would be expected from propionic acidemic rats and no particular reason to believe that the movements, seizures or brain abnormalities of these mice resemble autism.

However, this work was published and will henceforth bear the title ‘peer reviewed’. It might be only this branch of the research community, but I get the strong impression that there is a gentleman’s agreement among the members: I won’t spit on your research if you don’t spit on mine. There is no peer review. There is no chance that this paper could float on the Dead Sea, the holes are so large. As such it is poised to do a lot of damage, to autistic children and by extension to their families. That is to be expected from bad Science, the inevitable result of nothing much in the way of ethics, like reasonable grounds for a host of assumptions.

The treatment of propionic acidemia usually involves large doses of carnitine in an attempt to clear the buildup of toxic metabolites. Carnitine is also used in the diet industry because it raises the metabolic rate. A common side effect is sleep disturbance and for a sizeable number of already sleep disturbed spectrumites, this would not be a good thing. What chance that parents won’t jump on this research and immediately start treatment? Other forms of damage include the waste of material resources, which could be better spent elsewhere and future time and resources wasted on refuting speculative hypotheses.

Spot the Leech.

I think we can expect a large number of research initiatives like this one. Many will want to hitch their research wagon to the rising autism funding star. This paper, a dead loss in many respects, redeems itself slightly by having in one place a large number of the characteristics to be expected in research paradigms grafted haphazardly on to autism.

The research is judged ‘preliminary’. True, and there it will remain but in the meantime this is a general disclaimer to shield the authors from any and all repercussions.
In much the same vein as [1], the hypothesis will be so general that there is no data the experiment can produce that could falsify it.
In the same vein as [1] and [2], the target population will be defined as a subgroup of the autistic population, any subgroup of the autistic population, which will remain undefined.
The number of weasel word statements (may, possibly, could be associated with) will outstrip the number of definitive statements by a considerable margin. Occasionally the authors slip and a possibility becomes transformed into a definite at the stroke of a pen.
Non sequitur conclusions will be plentiful. In this paper, one example takes the form that some autistics have seizures as do those with propionic acidemia, therefore they are related or could be. What remains missing is the link.
Selective citation - debatable interpretations will be strengthened by the omission of reference data, which could suggest a more reasonable alternative. Of, the many examples in this paper, the conflation of ‘gastro-intestinal disturbances’ between the PPA crowd and the autism crowd without in any way pointing out the vast differences in the details is a notable example.
References are bountiful but many (most) are not particularly relevant to the actual hypothesis and some will not be mentioned in the body of the text at all. A perusal of this paper’s references reveals that many citations are not referenced in the actual text.
Last but not least, there will be great emphasis placed on the future benefits to be derived from this research and if the research is an animal model methodology, equal emphasis on the undeniable fact that this research could not possibly be done on humans.

The Advocate

2007-09-21T06:58:00.001-07:00

Harold Doherty, autism advocate and advocate by profession put the following comment on the post - "the New McCarthy-ism".

"Tsk, tsk. How DARE, Jenny McCarthy express her opinions and how DARE Oprah allow her a platform on which to do so! The AUDACITY of a parent who doesn’t recite the ND Manual expressing their opinons about their child’s autism condition. Tsk, tsk."

There's something a little off here. The comment is a poor match for the contents of the post, almost as if any post, no matter the contents, will do as a platform for the gospel according to Doherty: ND - bad, whining - good. Not mind you that I know what ND means precisely but that's OK; Harold doesn't either. I should ask the man for a definition.

The point is that Harold routinely objects to any comment that could remotely confer a touch of the positive to autism, not even an 'it's not all bad' sort of positivity. Why is that?

Look at this laudatory post:

"The Abernathy's did all they could to help their son overcome his severe autism but finally the disruption in the lives of family members and the violence that Colin inflicted on his mother, the bruises and bite marks, were too much. Colin's mother made the gut wrenching decision to give up her son to the care of the state. As the article indicates it was the right decision for all, including Colin, who benefited from the care and attention he was able to receive. This is a story that all who truly want to understand the realities of severe autism should read. The Arizona Republic, and reporter John Faherty, deserve full credit for telling a story that will not be told by Dr. Gupta and CNN or featured in a Hollywood movie. The Abernathy family - Teresa, Jim, Connor and Erin, all deserve credit for their courage in telling their story, and Colin's story, to the world."

Now Harold has many times emphasised that he is dealing with 'severe' autism and that he's fighting in New Brunswick for residential facilities for autistic youths and adults. And, as so noted in the post above, giving up your autistic child for the sake of the family is a courageous thing to do. Therefore, there will be no looking askance at the families who do so. I quite agree. I wonder how much elder abuse, abuse of autistic children or abuse of any dependent really could be avoided if folks woke up to the fact that people are entirely variable in their capacity to deal with things. For many children, they will face a lifetime of abuse, neglect and God knows what all by staying with the family. On the other hand, the evidence is stacked up knee deep that institutionalisation is seriously harmful for sentient creatures. Kanner said as much. Inmates are also many times more vulnerable to abuse of all kinds. See Amanda's very informative blog for chapter and verse on exactly what institutions get up to.

One can see Harold's difficulty. We got rid of institutions because of the terrible effects they had on people and because the abuses were so endemic that they could no longer be swept under the rug. However, nothing was put in place to support alternatives and crazily enough, there are some who actively try not to implement alternatives that are supposed to be available. See Amanda's blog for how difficult it has been for her to access what must be the most economical option - supported independence. Now how do you go about reversing the de-institutionalisation trend,when your heart's desire is to reinstitutionalise?

Pretty much as Harold seems to be doing. On no account can you admit to there being anything positive at all about autism. To get round the mountain of bad press about institutions, you need another mountain of bad press about 'severe autism' and it's horrible effects on family life, health and finances. No wonder the ND ers are persona non grata in Dohertyville.

Also, 'severe' and therefore 'able to be institutionalised' will be in the eye of the beholder. We know about this one courtesy of the Judge Rotenburg Centre. It took no time at all before painful electrical shocks were used for behaviours that were not 'severe' by any reasonable yardstick.

I wouldn't mind too much that Harold is campaigning to have his child locked away at some point if I could be sure that his efforts could be confined to his own backyard. But that 'bad press' he's so keen on combined with the very slippery definition of 'severe' that some of these folks employ and I can see this coming to haunt the wider autistic community. Also, the old adage about catching more flies with honey than vinegar comes to mind. If folks think that there are possibilities, they tend to be more inclined to supply the resources. The drive to label kids as autistic rather than retarded tends to support that.

Of course Harold is having a bet each way - lots of ABA without which your child is practically guaranteed life in an institution but just in case it doesn't work.....

California Dreaming

2007-09-18T07:57:00.000-07:00

In the light of writing those compositions we were, universally, I think, afflicted with in elementary school – “What I did on my holidays”.

In this case, while changing hemispheres, we took advantage of the route and had a little look at California, which is a remarkable state with lots of features, among which:

San Francisco: a metropolis of sophistication and it’s really beautiful as well. We were there on July 4 and it was delightful to see all the hampers and deck chairs traveling to some scenic spot to make the most of the day. It was also surprisingly cool.

Autism Diva: On the way to the Sierra Nevada we dropped in to see the Diva. In case you don’t know – she’s really pretty! And while that’s important for some she’s really bright too! I can’t say we solved the problems in the universe in a couple of hours and I don’t think we really tried but it was a nice chat and I would have liked to be there longer except for one little thing__

Central California – home to orange trees – lots of them and temperatures of around 45o Centigrade. Not too surprising that the hottest place on earth, Death Valley, isn’t too far away. I don’t like the heat that much - and I grew up with temperatures like this. It’s no fit place for humans in Summer.

Sierra Nevada – or Grand Sequoia National Park: Totally awesome. The majesty of the trees and the setting takes some beating.

Los Angeles: - Had to go there – have a family of movie buffs etc. It’s composed of equal parts tacky, California beautiful and run down. Burbank is all business. We met that typical US social indicator there – poor service. And they do it really well – appear to be really helpful just short of actually doing anything. It’s a quiet rebellion I think and the capitalists should take note – pay peanuts – get monkeys.

Big Sur: advertised as the most beautiful coastline in the world, and for once the advertising is right on the money. I should add that the driver on this expedition did a remarkable job of handling a yank tank and the processions of palaces on wheels.

Silicon Valley: Continuous suburbia for forty miles in any direction. Looks brisk and purposeful.

And that’s about it until we hit destination - the capital of the second largest nation in the world - Ottawa, Ontario. I have a theory about designated capitals – they usually end up on real estate that nobody especially covets. Canberra is usually described as a waste of a perfectly good sheep station and it could have been plonked on beautiful Twofold Bay. Brasilia is in the middle of the Cerrado, which is quasi monsoonal and the altitude is trying. Ottawa has some swamp-like features and the humidity in Summer would give Singapore serious competition. That said, it’s gorgeous – green, spacious, can walk everywhere (where we are at any rate). I don’t care too much for the grand metropolis, so this is perfect. The people are really hospitable with an interesting quirk. I thought I was suffering from a fairly common phenomenon – we do things different back home and different always translates in the mind erroneously as better. But no, others have noted that Ottawa seems to prize incompetence and overly values petty rules and regulations and that is surprising for a well educated population, where the pay rates as I understand it don’t sink to the menial as they do in the US. I’m wondering if the lack of capacity might have something to do with an undue emphasis on the interpersonal, so much so, that the essential – actually being able to do whatever is required has been swept to the margins. It’s somewhat baffling to be confronted with so much amiable idiocy and no one seems to have cottoned on to the fact that saying ‘I don’t know’ is better and less harmful in the long run. It saves having to undo the erroneous advice as well as actually getting the thing done. I also think that this has some bearing on the pitiful state of autistic inclusiveness in decision making processes. If the interpersonal is pre-eminent, then what autistics have to offer becomes devalued in this society – to the detriment of that society in fairly obvious ways.

My Not Too Terribly Polite Response to UMC

2007-05-20T19:53:00.000-07:00

Kathleen is unfailingly polite. I'm half Irish.

Dear Ms Taylor

I note your response to Ms Kathleen Seidel's letter "A Plaintiff in the Pulpit", which now appears on the Neurodiversity weblog, with a combination of incredulity mixed with misgivings over the future of a sizeable number of autistic children. I did not receive any response to my letter of 2 March 2007, which predates Kathleen's (attached for reference) and didn't really expect one since this is not my country, though my argument is basically that Christianity is universal and any action on the part of a recognisably Christian organisation that is fundamentally anti-Christian ought to be confronted.

Your response to Kathleen avoided addressing any of the real concerns that this "Truth is coming to light" event raises. Since you appear to have an aversion to meticulously researched facts, perhaps a more down to earth approach would be better.

You state that the Women's Division is guided by the United Methodist Book of Discipline quoting

"We encourage wise policies relating to the availability of ….drugs."

Wise policies are usually based on something other than the junk science your Lisa Sykes is aiding and abetting. You should try reading the Institute of Medicine (IOM) report of 2004. Contrary to the conspiracy theorists, the IOM is the expert panel of the American Academy of Sciences and quite independent of the CDC and FDA.

Your ignorance of this issue is very evident in the following:

"When pharmaceutical products and vaccines can be produced without mercury, we question why even trace amounts of this known neurotoxin are used."

The neurotoxin is there as a preservative - and so much for your vaunted 'support' for global vaccination. No preservative equals no vaccine in places like sub-Saharan Africa or anywhere else with a lack of reliable refrigeration. So which preservative has the endorsement of the Women's Division? Why not try thimerosal. It's proven to be a very safe preservative at the dosage used with no known side effects including neurological defects. Toxicity is a matter of dosage. We live in a world full of toxins including neurotoxins. Practically anything including water and salt can be toxic if the dose is right. Mercury is ubiquitous. Does the Women's Division have a plan to rid the planet of volcanic eruptions so we can avoid one of the main sources of Mercury? We actually are equipped by our Maker to deal with a whole host of nasties both animate and inanimate. Sure, we shouldn't overdo that. But tell me where in anybody's Science it is proven that the mere presence of small amounts of thimerosal is overdoing it?

"What is wrong with asking for clean healthy drugs for our children" you ask. I presume that this is an endorsement by the United Methodist Women 's Division for clean but not very healthy Lupron for children. When you dreamed up this idea that there is such a thing as 'mercury poisoning' of children diagnosed with autism, you also tacitly endorsed Rev Sykes lunatic treatment option – the chemical castration of small children so that all the fictitious excess mercury can be removed by the favourite method of quacks and charlatans - chelation. Do you have any idea what you are lending support to here? "Let the children come to me and do not stop them" in your concordance seems to be a recipe for the following.

First we inject a depot shot of Lupron every two weeks. It is a painful shot apparently but we'll give it twice as often as the manufacturer recommends because that seems to work better. Let's also give the child an injection of Lupron every day, not recommended by anybody, but who needs a paediatrician? We've got this fake Institutional Review Board, which Rev Sykes is a member of and they rubber stamp every step we make. Every few days we give the child some DSMA (chelator). This makes them feel ill and upsets their tummies but they'll get used to it.

So here we have a child both terrorised and made miserable based on no science whatsoever and you say that your mission is to protect children? The long-term effects of both the castration and the chelation are unknown by the way.

The horrible awful irony of this event you're organising is the spectacle of an expensive conference to render a phantom issue mute while simultaneously supporting real child abuse, which is what chelation and castration amount to.

Yours sincerely

DAN! Down Under

2007-05-13T20:59:00.000-07:00

14 May 2007

Dr Morton Rawlin

Director of Education

Royal Australian College of General Practitioners

1 Palmerston Crescent

SOUTH MELBOURNE VIC 3025

Dear Dr Rawlin

The Sydney Morning Herald of 3 May published an article titled ‘A Fresh Approach’ describing the Defeat Autism Now! (DAN!) biomedical protocols for treating autism. The article also served as an infomercial for a conference on DAN! Protocols organized by the Mindd International Forum on Children’s Health (Mindd) to be held in Sydney on 18-21 May 2007. The registration form for the conference prominently displays that attendance counts towards the QA&CPD points Program of RACGP. I would ask that RACGP reconsider that position. Perusing the program and the speakers, the thrust of this conference is a focus on marginal theories of autism causation combined with treatment strategies, for which there is little to no evidence and where the treatment could be said to have unacceptable risks associated with it. Chelation for metal toxicity in the absence of a diagnosis of metal toxicity based on usual criteria and mega-dosing of nutrients to correct for deficiencies identified by highly questionable means come to mind as high risk procedures of unsubstantiated benefit.

I would like to expand briefly on the practices and beliefs of three of the international presenters at this conference, Dr David Quig, Dr Richard Lord and Dr Anju Usman. I am not familiar with the other presenters, but these three should suffice to illustrate why a reputable organization might wish to distance itself from even the appearance of endorsing the activities of the Mindd.

Dr Quig is Vice President, Scientific Support of Doctor’s Data a mail order laboratory in St Charles Illinois. (USA). To plausibly demonstrate a need for detoxification, a lab like Doctor’s Data is necessary. I refer you to the urine toxic metals screen and the sample lab report on the Doctor’s Data website. [1] It has a few interesting quirks. Notably, the reference ranges are one standard deviation, not two. The reference range for mercury is about a third of that cited by other laboratories such as Labcorp, using the same equipment and method. Putting these together the probability of getting an ‘elevated’ result from a healthy individual is over 50% with just two tests. Naturally, the testing is a panel for multiple metals. Two other factors conspire to practically guarantee an elevated result from the target population, autistic children. Doctor’s Data accept single urine samples and quantify the results as per gram creatinine. A recent study in Paediatrics International states “a significant decrease in urinary creatinine was found in the PDD group compared to controls” and recommends “to use other internal or external standards for the quantification of urinary compounds in PDD research.” [2] This phenomenon is fairly widely known. It is also a common practice to use a ‘challenge’ test to demonstrate metal toxicity. A succimer chelation agent is administered several hours before the urine is collected. The reference ranges, however, are for unprovoked samples.

Dr Richard Lord is the expert on nutriceuticals. His lab tests for organic acids on the principle that autism is a collection of inborn errors of metabolism that are just short of producing a full-blown syndrome. Though he uses phenylketonuria as an example, the implication is that there are deficiencies to be corrected rather than absences and this can be done through nutritional means, though this is clothed in impressive biochemical language, co-factors and the like. I refer you to his article on the subject, which is informative [3]. This may be the Science of the future, where everybody’s metabolic fingerprint can be identified and drugs, diet or whatever can be tailored to the individual. It is not the Science of the present and is decidedly experimental when used to dose or overdose autistic children with a variety of vitamins, enzyme cofactors etc. As with the testing of toxic metals, the reference ranges do not accommodate the low creatinine levels seen in autistic children. Therefore they are at high risk of receiving megadoses of nutrients based on lab results that are erroneously inflated. Interestingly, Doctor’s Data warns against using urine samples to test for nutritional metabolites so there’s not a lot of consistency in this field.

Dr Anju Usman is rather well known among DAN practitioners as a firm believer in the benefits of chelation. I refer you to a presentation she gave on the subject that was recorded on Autism One Radio. [4]. For Dr Usman, apparently the behaviours associated with autism are either symptomatic of mercury or lead toxicity, with the occasional dose of hyperactivity from aluminium toxicity. Autism presents simply as a challenge to find the best means of ‘safe’ chelation. There is no such thing as safe chelation. The risks of organ damage and the effect on bone mineral density are generally weighed against the real need to lower toxic metal levels and with no expectation that lowering those levels will have any positive effect on the neurological function of the child, since it never has in cases of real metal toxicity. But this is not the way it happens with these practitioners. Dr Usman was the DAN practitioner who, according to the Pennsylvania State Medical Board enquiry, was responsible for recommending EDTA chelation of five-year old Abu Bakar Tariq Nadama for alleged high aluminium levels.[5] She referred him to Dr Roy Kerry, who gave Tariq IV Na-EDTA instead of Ca-EDTA and the boy died of sudden cardiac arrest.

Lately, there’s been a new spin put on the dubious hypothesis that autism is a species of metal toxicity. A father/son team, Dr Mark and Mr David Geier came up with the bright idea that autistic kids cannot excrete mercury because they have excess testosterone, which binds the mercury in the body. So, they developed and patented the ‘Lupron Protocol’, whereby autistic children, girls as well as boys, some as young as four and five are chemically castrated with leuprolide (Lupron) and then chelated. The biochemical justification for this is bizarre to say the least. Dr Usman has had at least four patients go through this protocol. [4] according to the proprietor of Autism Media and a client of hers.

I have every faith in the skepticism of the average Australian GP and perhaps these conferences serve to keep our GPs abreast of what’s new in fringe Medicine this year. There is a crying need for education of primary physicians about autism for many reasons. Autistic children need protection from indiscriminate experimentation under the guise of novel treatment. There are issues of diet with many of these children due to sensory hypersensitivities. Whether these children are more prone to Coeliac than the general population is suspected but to my knowledge, not confirmed, but I could be wrong about that. There are known problems with autistic children being essentially denied medical treatment because of a combination of communication problems on the part of the child and false beliefs about autistic behaviours on the part of the physician. Perhaps RACGP would consider liaising with Professor Bruce Tonge of Monash University, an expert on Autism, to develop a real course for primary care physicians.

I have copied this letter to Australian Doctor in the fond hope that the journal could do a piece of investigative journalism that counterbalances the uncritical and frankly credulous efforts of the Sydney Morning Herald.

Yours sincerely

Cc: Professor Bruce Tonge

Professor Peter Mudge

Dr Lynn Buglar, Australian Doctor

References:

1. http://www.doctorsdata.com

2. Spot urinary creatinine excretion in pervasive developmental disorders
Authors: WHITELEY, PAUL; WARING, ROSEMARY1; WILLIAMS, LEE2; KLOVRZA, LIBUSE1; NOLAN, FRANCES3; SMITH, SUSAN3; FARROW, MALCOLM4; DODOU, KALLIOPI2; LOUGH, W. JOHN2; SHATTOCK, PAUL5
Source: Pediatrics International, Volume 48, Number 3, June 2006, pp. 292-297(6)

http://www.ingentaconnect.com/content/bsc/ped/2006/00000048/00000003/art00011

3. Autistic therapies focused by laboratory data. Part I: Organic acids Richard S. Lord, PhD

http://www.metametrix.com/resources/content/LearningCenter/Articles/Lord%202005,%20OrgAcids%20in%20Autism.pdf

4. Dr Anju Usman

http://www.podango.com/podcast_episode/245/12831/Autism_One_Conference_2006/Anju_Usman_MD__Journey_to_RecoveryFinding_a_Safe_Path_to_Heavy_Metal_Detoxification

5. http://www.circare.org/pd/kerry_ordertoshowcause_20060908.pdf

6. http://health.groups.yahoo.com/group/tddmps/message/1038?threaded=1&p=8

With many thanks to Mike Stanton, Kathleen Seidel, the Diva, Prometheus and anyone else I've missed who had all the very best information and/or analysis right there on their blogs.

The Fine Art of Representation

2007-05-08T16:57:00.000-07:00

What does it mean to be a representative of the autistic spectrum and who qualifies seem to be some of the perennial questions in autism advocacy. When someone speaks from the perspective of a spectrumite, should we take note and if so how much? The issue has moved further into the orbit of my conscious focus since the Canadian Senate hearings but it was always lurking somewhat in the background. Thomas McKean has some fairly definite views on the subject and I’d like to borrow one of his lines because this I can agree with:

“There needs to be accountability…., because representing the autism community as a person with autism is one serious responsibility.” [1]

Just so. The person who raises their hand and waves the diagnostic banner is by implication, a representative of the spectrum, and like other ‘representatives’ is subject to a largely unwritten code of conduct. If, by analogy, an elite athlete is representing their country at an international venue, their actions are not judged solely on their sporting prowess. Should they find themselves in an acrimonious exchange with the local citizenry at the pub or in the parking lot, they may well find themselves on the first available plane home because they are not representing merely themselves, they are also acting as representatives of their country. Similarly, I think we have the right to expect that those with ‘credentials’ who speak on autism issues will not bring the spectrum into disrepute. They should have a care, because they are in effect representing more than themselves.

Disrepute is rather broad and practically anything can be made to fit, but there are some situations where it could be said that the transgression is clear. I should add that in re-reading the material on this, I found it quite reassuring to find that spectrumites are just as muddle-headed, irrational, driven by agendas and prone to having their intellect trumped by their emotions as any other specimen of the human race. [2] Heading the list of the irrational is this blog commentary following the publication of Amy Harmon’s article, “How About Not 'Curing' Us, Some Autistics Are Pleading”, which caused something of a ruckus, particularly among some parents of the autism community.[3] The blogger made quite a few opening remarks about Michelle Dawson: [4]

She claims to speak for autistic people across the spectrum
Even if she has Aspergers , this doesn’t qualify her equate all forms of autism with her own life experience.
She claims most cases of autism resolve into unique quirkiness that should trouble no one.
She has no concern for parents facing the possibility of having a 40 year old toddler.
She speaks as if she knows more than they do about their children.

Those opinions were then followed by the fiction that Ms Dawson’s comments in the article painted a rosier picture than the reality and the usual response from some sections of the autism community like ASAT, that is, appeals to every emotional red herring in the book.

Assertions1 to 4 are not backed by anything the author read in either Amy Harmon’s article or any other of Ms Dawson’s articles including the Misbehaviour of Behaviourists. Assertion 5 is merely illogical and the comment is as I said, a fiction. Michelle’s contribution to the article were miniscule really and insufficient to paint any kind of picture, rosy or otherwise. So, how could the author get this so wrong and she a card carrying member of the spectrum? I suspect that she hadn’t read the article or any other of Ms Dawson’s articles and was relying on the testimony of the folks at the Wampum blog. This seems reasonable as she calmed down quite a bit after she had done some reading and became quite conciliatory though this was marred somewhat by her final offering – some of the finest social reasoning I’ve ever read. The folks at Wampum should be proud. [5]

“When it comes to framing a message that wins the support and cooperation of others, anything that doesn’t have that as its foundation [the goal of self sufficiency] won’t register with people.”

She’s probably right about that but Lord, it was just as much dancing around the issues that had been raised by introducing others that hadn’t, which is not a tactic that I usually associate with the spectrum, but there it was. The important thing here – she made a host of unsupported and unjustified assertions – not a representative to be proud of.

The first point that she made - that Ms Dawson claims to speak for autistic people across the spectrum needs addressing. Many people have made that assertion about ‘autistics’ usually when said autistics are spouting words they do not like. For Thomas McKean, the point is central. Only those with the proper diagnosis at the proper age can speak for the spectrum. As far as I know, Michelle has never claimed to be speaking for anyone but herself and as far as I can work out, Mr McKean is wrong. It simply isn’t possible for anyone, spectrumite or not, to be able to make a valid claim to speak for the spectrum. In an interview I saw recently with Roy Richard Grinker, author of Unstrange Minds, he made the point that there is not ‘Autism’ but ‘Autisms’.[6] Therefore, Thomas or Michelle or anybody really can speak only for their bit of the spectrum and their own experience of it. That doesn’t mean that their view is unimportant, but as happens with similar issues, there are limits and these limits are well understood. Going back to our representation analogy, if the Prime Minister gives a rousing speech on this wide brown land of ours, he speaks as a citizen and would be expected to know far more about it, on many levels that a visitor. He speaks with authority. If Thomas McKean gives a rousing speech on autism, he speaks with authority also, but not with absolute authority. It is well understood that there are limits because the group just like the citizens of a country are heterogeneous. No one expects the Prime Minister or Thomas McKean to be representative on all points or to speak for all parties, unless you have a grievance and then you get the specious argument that Michelle or someone else cannot speak for the spectrum. Well duh! is appropriate here.

Why have autistics speak at all? I think it’s important, crucial even. There is apparently an autism conference circuit, which promotes autistic speaking though as some have pointed out – this can degenerate to the level of ‘self-narrating zoo exhibits’ to quote Jim Sinclair. Obviously there are a lot of people who want to hear the story from the inside track but the frame for that story and its overall message may not be what spectrum residents wish it were.

There are roughly two ways of looking at autism, which dictate what kind of message is delivered from the autism pulpit. The first is that autism is a devastating disease, just like cancer for which a cure must be found. Any condition that takes such a toll on everyone involved in terms of finances, health and happiness should be prevented at all costs. Naturally the proponents of the ‘Cure for Autism” want to hear a message that supports their endeavours. Enter Marty Murphy. She’s your gal. Her “My Name is Autism” piece is a kind of free form poetry version of the Autism Speaks video ‘Autism Every Day’ and makes the same points – all in support of the basic thesis that autism is so terrible that eradication would be a mercy for all concerned. [7] The interesting point about Marty’s forays into public speaking is her representation of herself. Her co-author of ‘My Name is Autism’ is an Omri Fiman, a young non verbal autistic male. But not really, because Omri Fiman is really Marty Murphy, a middle-aged verbal autistic female. Stranger still, ‘My Name is Autism’ is practically a verbatim plagiarisation of a piece written years earlier by a non-autistic mother. [8] As far as I know, Ms Murphy is still a highly regarded speaker on the autism circuit in the wilds of Illinois and neighbouring states and an upstanding member of her local autism chapter. What is bothersome is the uneasy feeling that here might be an extreme example of an Uncle Tom Autie (UTA). There is always a proportion of any population for whom self-immolation is attractive and just as Uncle Tom made the perfect apologist for the natural order of things pre-civil war, that is, slaves good when subservient, Marty Murphy apparently enjoys portraying herself as a festering ‘thief in the night’ and a whole lot besides. There could well be shades of S & M in the mix but I don’t understand this very well. I do know that I find people who are into advanced masochism, complemented by the quite amateurish subterfuges of Ms Murphy, embarrassing. I also dislike laying the blame for this fiasco on the local autism chapter for deliberately selecting the most suggestible and gullible autistic they could find and using that person as a public relations device. That would suggest that autistics are dumb little innocents who cannot take responsibility for their own actions, not a position that I am keen to champion. But then, I’m not in the pro-cure crowd.

The thing with remaining at arms length with the cure factions of autism advocacy is for me a conviction that autism is not a defective but otherwise normal person wearing autism like a medieval chastity belt while the parents search frantically for the key. Autism is a different way of being if recent studies in perception and neurological configuration are anything to go by. That does not mean that autism cannot be disabling and terribly disabling. Many conditions that are not autism can be equally disabling. However, no one uses the worst manifestations of those non-autistic conditions to say that this is the reality for people, all the people, who are not autistic. And no one asserts that the disability is all that there is to the person either. Somehow the likes of Autism Speaks manage this without a hitch for autistic folks. God knows why. There are it seems quite a few autistic self-advocates who buy into the rhetoric. Thomas Mc Kean comes to mind. [1] He is very much pro cure according to his private email to 67 luminaries of the autism conference circuit even though that position is somewhat qualified by being targeted to the ‘more severely affected’. The first point for Mr McKean and others of that ilk to consider is that primarily, if autism is a defective state of normal, then they have nothing to say that is of value. Far better to have a non -defective speak on their behalf. It would be ethical to consult with them on treatment options but that would be a form of noblesse oblige and other than that, what they would have to say would be pretty meaningless.

The second point to consider is that buying into the rhetoric is neither here nor there, if you are merely a parent, but if you are speaking as a representative of the spectrum, you had better be able to support that rhetoric no matter where you found it or from whom you heard it. To illustrate, Mr McKean’s private email to the 67 autism circuit luminaries contained a number of sweeping statements concerning those who say ‘ABA is wrong’ and those who apparently don’t want to see autistic children medicated, using the line that anti-epileptics are necessary and that clonidine is useful. There are no references for what exactly was written or said or the people involved and that is certainly transgressing the boundaries of proper representation. [9] It is not therefore possible to judge the veracity or otherwise of Mr McKean’s assertions. The reference to anti-epileptics doesn’t inspire confidence. Those opposing medication of autistics are generally talking about anti-psychotics. Perhaps Mr McKean has never heard of APANA and is unaware of permanent side effects of anti-psychotics such as tardive dyskinesia. [10] He may not be aware that the usefulness of clonidine is limited by its side effects, which include sedation and fatigue.

In a similar fashion, Jason Oldford appeared before the Canadian Senate. [11] Part of his testimony included this line: “ Just think of how many children will not be in group homes or institutions. Think of how many children will be able to contribute to society if they get this treatment.”. He, himself, did not get this treatment and he’s not in an institution and as far as I know not even Gina Green has gone so far as to claim that ABA is sufficiently miraculous to keep autistics out of group homes and institutions. It is necessary to have a care and a little more scepticism in some of these advocates wouldn’t come amiss. I know, or think I know what drives some of this advocacy – a desire to do anything at all to mitigate the distress of parents, even as Brigitte Harrison noted in her testimony to the Canadian Senate, conducting sessions on “mourning, on post-diagnosis shock”. [11] Has the Federation quebecoise de l’autisme considered that they’re essentially asking a person to mourn her own existence? And they say that autistics have a problem with empathy. Thomas McKean, Jason Oldford, Brigitte Harrisson and Natasha from the Wampum blog would run rings around the great majority of socially wired folks in the empathy stakes.

Their empathetic abilities, however, do not give them carte blanche to spout nonsense, even when that comes from a seemingly respectable source. Seemingly respectable sources may not always be truthful. Kit Weintraub was ‘the voice from the trenches’ following the publication of the ‘Misbehaviour of Behaviourists’. [12] She was very ready to tell the world how effective ABA was for her two children. Though more successful with her son than her daughter, she still reported that her daughter was a ‘happy ten year old’. Fast forward 2.5 years and the story has changed. [13]

“I have two kids with autism, one, a girl, twelve, who is extremely self-injurious. We have run a very high quality ABA program for her for years, but could never get rid of the self-injurious behaviors. Only on risperdal are they reduced, and we have seen her gain close to 100 lbs on the medication. We have had all sorts of behavioral experts come in and try to extinguish the behavior with positive behavioral interventions, unfortunately, they did not work.”

Harold Doherty sees himself as a proper sort of autism advocate, but even he is not always reliable and in this instance downright misleading. Listening to Harold, one would think that Laurent Mottron was a pychiatrist dabbler around the fringes of autism research, since this is how he refers to him: [14]

“Psychiatrist Laurent Mottron an alleged autism expert who publishes reports on dozens of autism cases a year, almost all involving high functioning autistics and Asperger's Persons, almost none involving the low functioning autistic persons who require such expensive intensive residential care and treatment as adults.”

Note the ‘publishes reports’ rather than the peer reviewed research that it really is and I’d love to know how he assessed the function level of the research participants or how that stacks up against other researchers. Knowing Harold, I doubt that he did any assessment at all, which rather nicely illustrates the necessity for paying attention to how arguments are framed and what supports them.

We need representatives from the autistic community speaking out quite desperately. There aren’t nearly enough out there to put the lie to the epidemic of mad stereotyping so de rigeur these days. There is an equal need for responsibility and accountability as Thomas McKean rightly points out. Second-rate or unverified second-hand is not nearly good enough.

1. Thomas McKean’s notorious email to autism conference folk may be found here: http://www.thomasamckean.com/articles/speaking.htm

2. It is just as dangerous to advocacy to assume that logic and rationality are hallmarks of the spectrum. That stereotyping is reminiscent of the ‘noble savage’ view of primitive peoples circa 1900s and we all know what happened to them.

3. Amy Harmon, How About Not 'Curing' Us, Some Autistics Are Pleading, http://www.nytimes.com/2004/12/20/health/20autism.html?ex=1178769600&en=8fa333dbfe94b9ef&ei=5070

4. Kathy Cramer, Blog Commentary from Natasha: http://www.kathryncramer.com/kathryn_cramer/2005/01/a_response_to_m.html

5. Wampum blog

http://wampum.wabanaki.net/archives/001574.html

6. Roy Richard Grinker NPR interview: http://www.npr.org/templates/story/story.php?storyId=7496704&ft=1&f=1033

7. Marty Murphy, My Name is Autism: http://www.asohalton.org/My%20Name%20is%20Autism.pdf

8. Anne Watson, I am Autism, 1978: http://www.mima8.com/Autism.htm

9. Mr McKean made an additional point, again without attribution, that the folks who were writing editorials against his email were the ‘self diagnosed’. [http://thomasamckean.com/blogs///index.php/general/2006/07/24/autism_liberation] He doesn’t reference it, bur if what he is referring to is the editorial on autistics.org [http://www.autistics.org/library/whoisautistic.html] then this statement is frankly dishonest. The authors are all diagnosed autistics. It’s this kind of carelessness that eventually earns one a reputation for being at best unreliable.

10. APANA: http://www.dinahm.pwp.blueyonder.co.uk/

11. Senate Hearing Transcript: http://www.parl.gc.ca/39/1/parlbus/commbus/senate/Com-e/soci-e/12cv-e.htm?Language=E&Parl=39&Ses=1&comm_id=47

12. Kit Weintraub, A Mother’s Perspective on the ASAT website at: http://web.archive.org/web/20051216174906/http://asatonline.org/resources/library/moms_perspective.html

13. Kit Weintraub, Comments submitted to JRC on Friends of JRC website at: http://judgerotenbergcenter.blogspot.com/2006/04/comments-submitted-to-jrc-from-mother.html

14. Harold Doherty on Laurent Mottron:

http://autisminnb.blogspot.com/2007/04/government-was-warned-now-time-to-pay.html

Blogging against disablism

2007-05-01T17:52:00.000-07:00

On this May 1 2007 it behooves (word of the week) us to think about disablism and its converse ableism and what that means in the real world.

My view on this is very similar to abfh - every person on the planet is abled or disabled but some are more aesthetically abled or disabled than others. That is, the concept is heavily conflated with the fact that humans are not simply social but they're heirarchical with it, which leads to a pecking order mentality when it comes to ability and/or disability. This is the linear view of humanity and one I think is terribly truncated. The correct representation of humanity is as a multi-faceted gem (1). The more facets there are, the more it sparkles, which is what evolutionary theory concludes also.

Unfortunately, the holders of the keys to representation, psychologists and others of their ilk are probably more heirarchical than most. It is no accident that these folks are heavily invested in 'normal' and providing therapies to assist the afflicted in attaining the nearest approximation to normal that they can in the fond belief that therein lies the road to happiness. Alas, in purposefully dimming large swathes of those facets the whole gem shines less brightly, gathering the dullness of a synthetic conformity.

Anyone who has anything much to do with under-appreciated elements of society know this rather well because one of the unexpected bonuses of this position is a restored vision of the true sparkling nature of humanity. Some people call it joy.

1. This concept is a Phil Swartz original, though he applies it to religion.

Harold’s Hillock: ABA, Equivocation and Other Feints

2007-03-26T17:52:00.000-07:00

There’s a problem on Harold Doherty’s blog. It’s just about impossible to carry on a civilized conversation with anyone without Harold stepping in and ruining the reciprocal nature of it. Case in point, Harold had a post on the myth of excluding very low IQ children from the Lovaas 1987 study. I chip in with the fact that the myth isn’t a myth. Trouble is, I remember what I read really well, just not where I read it, so I can’t cite the reference. Harold dives in, and not just with a ‘please cite the reference’. Fortunately, Michelle blogs about it as a form of holiday from her Tribunal case, which is harrowing and giving her sleepless nights no doubt. So, I refer Harold to her blog for the proper references - and nothing happens. Harold won’t allow the post. OK, it does wreck the reciprocal nature of information exchange, but it’s not that big an obstacle, a hillock really, since I can blog about it on my own site. But, you must admit it’s annoying, especially when the matter is quite a bit more serious.

In the same post on Harold’s blog, I also made a reference to the Sallows and Graupner study demonstrating the random effect of the intervention (ABA) on the outcomes – a very important point. That interpretation of the data is much more in accordance with the facts than citing this study as a replication of Lovaas. So some helpful chap (Anonymous) writes a reply and with hindsight, I’m just not prepared to have yet another post disappear just to keep Harold in the fantasy world to which he has become accustomed.

Here’s what Anonymous had to say:

>>>alyric wrote that the paper demonstrates "that the therapy is not the critical factor in the outcome". I thought it might be important to recognise that both therapeutic groups DID recieve [sic] ABA based intervention. The authors note "All children received treatment based on the UCLA model" (Sallows and Graupner, 2005, p. 420). They also note (p 422) that some elements of PRT (R. Koegel and Koegel, 1995) were used while the work of Maurice, Green and Luce (1996) was also drawn on. <<<

True but not relevant, yet.

>>>Table 1 indicates mean hours of ABA for the two treatment groups to be 38.6 (Clinic-driected) [sic]and 31.67 (Parent-directed). during year one with similar hours for year two of the program.”<<<<<

Getting warmer, but just a tad misleading there and did not mean to be, I’m sure. The hours for the second year were 36.6 (clinic) and 30.9 (parent). There’s still a considerable gap. But, that’s not the only gap. The supervision regime is markedly different: 6-10 hours per week (clinic) as against 6 hours per month (parent).

>>>>If you look at the data reported prior to combining scores the clinic directed group of rapid learners that met criteria for best outcomes is close to 38% while 60% of the parent directed rapid learners met criteria for best outcomes. All recieved [sic]ABA intervention.<<<<

Exactly and with much less intervention and much less professionally supervised, you have markedly better outcomes. The difference between 60% and 38% is more than enough to do two things – bury this as a replication of Lovaas and cast considerable doubt that there is any correlation whatsoever between the intervention and the outcome. When data looks like this, one tends to think “random”. Another thing to keep in mind is that the clinic group also had an advantage on some of the variables that Sallows et al seem to think might be highly correlated with outcome, like IQ. The clinic group pre-treatment mean IQ was 60.4 compared to 51 for the parent group. VAB scores and verbal imitation scores were also significantly lower for the parent group compared to the clinic group. Didn’t do too well with that head start, did they?

>>>>One confound that may be at play that may account for some of the variance is alluded to by the authors when they report that parents "...were encouraged to to extend the impact of treatment by practicing newly learned material with their child throughout the day..." (p 420). It begs the question as to if the parents who were more engaged in "directing" home based programs were in fact also more inclined to extend therapy hours as they had a more intimate knowledge of programs? <<<<

Yes, they did say that on page 420, but they also said the following:

P432 – “Senior therapists rated parents on the percentage of involvement in their child’s treatment during the first year. Although the correlation with outcome, r = .32, was not significant.” That’s a very low level of correlation.

P434 – “First, ratings of parental involvement were weakly correlated to outcome.”

There’s a flat contradiction there and all the more puzzling because they had data to show that there was no correlation between parental involvement and outcome, so why try to use it to explain the good results for the parent group? But this is how they interpreted the differences in data between the parent and clinic groups:

“Parent-directed children, who received 6 hours per month of supervision (usually 3 hours every other week, which is much more than “parent managed” or “workshop” supervision), did about as well as clinic-directed children, although they received much less supervision.”

I think this is in the class of a ‘whopper’. They have such a huge amount of statistical data in this study and here we have 60% good outcomes being considered more or less equal to 38%.

Both the whopper and the contradictory analysis are worth a letter to the American Journal on Mental Retardation asking for an explanation, in the fond hope that there will be an erratum published at least for the whopper. By nature, I’m a pessimist.

>>>>The primary question the authors attempted to address seems to have been whether a Community based program could achieve similar results to what Lovaas (1987) did (without using aversives) (p419). If you think about it... the entire program, both parent directed and clinic directed service models, were in fact facets of the WEAP community based program... it appears that as such, they are pretty darn close to in fact achieving such outcomes.<<<<

Again that’s what they said at the start of the 2005 paper. However, way back at the beginning here’s what the title and abstract said:

Replicating Lovaas’ Treatment and Findings: Preliminary Results1

Glen O. Sallows and Tamlynn D. Graupner

Wisconsin Young Autism Project

Abstract

Twenty-four autistic children completed the first year of a three-year replication

study of the 1987 research published by Lovaas. Changes in pre-post test

scores showed an average gain of 22 IQ points. Nineteen of the children

matched those in Lovaas’ study. Eight children showed a gain of 45 IQ points,

raising them into the average range. Gains in adaptive/social skills rose to the

low average range. These “best outcome” children represented 42% of the

matched group. Several factors related to outcome and its prediction are

discussed.

Originally they were out to duplicate Lovaas’ findings and that’s perfectly OK. What is not OK is to change tracks along the way and not even attempt to address the discrepancies between their initial aim and their final results. Well, it’s not OK if this were a paper in a scientific journal. But I’ve said before, behaviour analysis does not use the methods of Science. I’ve also said that behaviour analysts tend not to learn from other areas in psychological research. This study demonstrates that apparently they cannot learn from their own research. Carrying on as if this study is nothing out of the ordinary does nothing to advance understanding; it simply ignores the discordant in favour of maintaining a very shaky status quo. There is another plausible explanation of the Sallows and Graupner results. Calling ABA simply a random factor is being nice. The data fits very well into the scenario that ABA is fundamentally antithetical to how an autistic can learn and impedes progress. Therefore, less of it will result in better outcomes, which is what they found. Are they going to critically examine what they did? I doubt it. This is ABA and the framework easily handles any empirical data. I’m not the only one who has noticed this predilection for equivocation in behavior analysis.

Is Behaviorism becoming a Pseudoscience?, by Jerome C Wakefield (2006) looks at token economies in the mental health system as an alternative to pharmaceutical approaches to managing schizophrenic patients. Apparently Wong, Midkiff and Wyatt lament that behaviour analytic management is cast aside in favour of pharmaceutical solutions. Here’s equivocation at its best (or worst).

“Bizarre responses, most notably psychotic speech, will at times resist contingency management procedures….or will spontaneously recover over time….or when training has ended.” Has any possible outcome been omitted here?

They go on:

“These results have been interpreted as showing that clients’ underlying belief systems have remained intact despite behavioral training.” No kidding!

And –

“However, multiform and persistent bizarre verbalizations can be parsimoniously viewed as generalized responses with a long history of intermittent reinforcement. After being positively and negatively reinforced by different people in various situations over many years, bizarre verbalizations could be overlearned responses that resist contingencies administered in circumscribed therapy sessions over mere weeks or months”. In other words, no amount of data is enough to disconfirm the behaviorist explanation and as should be really familiar, the therapy would have worked if they had had more time.

Wakefield points to the seminal and very long term study by Paul and Lentz, much cited in support of behavioural interventions in mental health. It appears to have the equivalent status to the Lovaas 1987 study. Uncannily, all the positive outcomes were due, not to reward contingencies, but to a draconian system of punishment – aversives. Aggression toward staff was met with 72 hours solitary confinement with manipulation of the environment to make it uncomfortable. The outcomes in Lovaas were contingent upon aversives as well, something that is rarely mentioned.

Paul wrote a critique of Wakefield's critique, which readers should look at. It looks to me like really high quality equivocation, but Wakefield did ignore some things, notably, the nature of the population in the study - a very big factor. This does not however, make up for lack of parity of reasoning or as another reviewer pointed out - the effects of the aversives, which Paul attempts to equivocate his way around.

A Siren’s Song of ALF

2007-03-19T20:20:00.000-07:00

Alf, like the Naiads Harold Doherty refers to, is a mythical creature. Alf was born initially as a fundraising slogan on a coffee cup or some such on autistics.org and there he remained until a rookie reporter for the Times wrote a rousing if hastily researched piece on autistic advocacy citing Aspies for Freedom and the ‘Autistic Liberation Front’ (Alf). Harold found the article. The thing is, Alf, properly speaking doesn’t exist. The article, however, sparked one of those tangential forays familiar to spectrumites everywhere and Alf became flesh so to speak as a joke too good to pass up. [1] As is fitting with the lofty aims of the enterprise (think Che Guevara), Alf was conceived in the superhero mould. The fact that few of the participants had access to suitable costumes was brushed aside as mere quibbling. The result is, I think, impressive thanks to the Photoshop expertise of the resident legal eagle on Autadvo, Anne.

I don’t see Alf as a nymph in reverse drag. He’s a stocky character, balding, a slight paunch and a belligerent attitude. He’s not the sort who would bother with vocals on the Med. Far more likely, one would think, that if the occasion were sufficiently provocative, Alf would stride up in his workingman’s boots and deliver a kick where it might do the most good. This lot comes under the heading of serious provocation:

“ Those who oppose any effort to treat, educate or heaven forbid change an autistic child for the better. Do not listen to the siren’s call”. Or…..

“ Parents who seek to help their OWN children, not the ND’ers themselves but their own children, through attempts at cures are vilified by the ND movement.[2] And….

“ They [the sirens] will not help teach him/her to speak and read and brush his/her teeth.”

It’s hard to know where to start. “Cure” is something that implies that there was a biological something to be got over. We don’t as yet have a biological anything that points to the aetiology of autism and therefore an unequivocal path of intervention. We do know that there are a lot of autistic children who were apparently ‘cured’ with a variety of different treatments including biomedical interventions, chelation and ABA. Who to believe? I think no one, at this point in time. Anyone promising ‘cure’ had better take note of this article, which points out that these kids are as autistic as they ever were, which begs the question – are middle-schoolers more perceptive than ABA therapists, chelationists and peddlers of biomedical nostrums?

I think there is a case to be made that taking the ‘medically necessary’ path to clamouring for funding for interventions for autism may have been tremendously short sighted. It’s just too easy to shoot holes in the argument and that’s without getting into the demonisation of the entire spectrum to up the pity factor as far as possible, which has some interesting consequences - like wrecking your child’s future in advance, so why did they bother in the first place.

The argument for ‘treatment’ is better than cure but again, no one that I know of is against treatment per se. The whys and the wherefores however, might be up for debate. Though why that should incense Harold is mystifying. Surely if he’s pushing the position that his ABA should be mandatory, note, not optional, then he’s going to get a debate, like it or not. Best to start here with the things that Harold is convinced that some people don’t want autistics to learn, like to speak, to read and brush their teeth. It a pretty good list on the whole because it covers most of the situations, where to put it bluntly ABA would be in my view, not necessarily the optimal method for achieving one’s goals.

Dr Morton Ann Gernsbacher of the University of Wisconsin has this wonderful little article laying out beautifully the difference between speech and language. There is one. Just because you can’t say it, doesn’t mean you don’t know it. Speech is merely the physical manifestation of language. While it may be the most convenient form of communication, it is not the only means by any stretch of the imagination and for those who have difficulty in the production of speech, it may well be that it is a form of apraxia - the mind is willing but the muscle is weak. No amount of M&Ms will remedy this situation. What one hopes for is a therapist with enough know how to recognise that situation and how to remedy it. If this is an otherwise normal kid, the therapist would most likely be a speech language pathologist. If this is an autistic kid, the therapist could be an ABA trained therapist. The interesting thing about ABA therapists is that their academic background does not qualify them for a Bachelors or Masters in Science. There’s not enough Anatomy, Physiology, Neuroscience etc in their academics so they are awarded Degrees and Masters in Arts [3]. This is a serious issue and what, I wonder, are FEATBC and assorted affiliates about in mandating a therapy as ‘medically necessary’ when the therapists have such a dearth of biological knowledge.

The other consideration with language remediation is the proliferation of Verbal Behaviour (VB) programs. The application of behaviour analysis principles to the acquisition of language has no empirical support in the literature as Mark Sundberg pointed out as recently as 2005. The manufactured jargon of it was tackled rather nicely by Noam Chomsky in 1959. Here’s what he had to say about the mand in light of behaviour analytic logic:

“a speaker will not respond properly to the mand Your money or your life (38) unless he has a past history of being killed.”

Why a rational human being would choose ABA to remedy a deficit in speech is lost on me. The basis of ABA is not nearly as sound as its practitioners make out, but I’m not about to repeat myself here. On a brighter note, consider this from jypsy as a sterling example of how to tackle problems in communication. It’s a beaut and one I hope gives lots of parents encouragement to find many ways of communicating with their autistic children.

“With the consistent and enthusiastic support of Alex’s teacher assistant and parents, Alex entered Grade 1 at Gulf Shore in September 1993, with the ability to use all of the following means of communication—sign language, gestures, Canon Communicator, picture communication symbols, infrequent vocalizations and an immerging ability to print words”

The second skill that Harold insists that folks don’t want autistics to learn is how to read. His irony meter must be broken. I’m hyperlexic myself and this idiosyncrasy is apparently as common as dirt on the spectrum. Not mind you that the level of reading skill is at the same level of comprehension. No, it is not but I suspect that too much is made of the disparity to protect those normal folks out there. Hyperlexia aside, which is nothing more than an enhanced ability to spot patterns, there are many issues here. What do you do with spectrumites for whom language is a foreign language? One might argue that breaking language tasks down into small bits might be of benefit, but there are two problems with this approach. Primarily, there is no evidence whatsoever that this is the case for autistics, and I might add somewhat forcefully that ABA is never going to contribute to the answer. Secondly, breaking things down into small bits is emphatically, the opposite of how a hyperlexic can learn. If deciphering patterns is a common gift of the spectrum, then spectrumites need access to enough bits of information to detect the inherent pattern. That much must be obvious and it should be equally obvious that assuming that the bit by bit approach has merit may lead to an awful lot of damage, given the ages at which this intervention is used.

This bit by bit approach to tasks is I think an artefact. The Skinner box for training rats and pigeons and the minimalist environments for training humans that ABA therapists use are one and the same. Pigeons are taught to perform a figure of 8 pattern by careful shaping of a series of approximations to the desired behaviour with copious amounts of reinforcement at each step. It is an assumption of gargantuan proportions that humans benefit from a similar regime and not simply for performance of a single task but for learning in general. Where is the evidence?

The third factor in Harold’s list of things that some folks would not like autistics to learn is cleaning their teeth. This skill one could postulate as the exemplar of a whole range of similar skills and the sort of thing for which ABA might truly be useful just so long as there are no confounding biological factors including sensory hypersensitivity. It is fact that contrary to the testimony of autistics, ABA takes no account of the effects of sensory issues such as the effect of the brush and the level of mintiness in the toothpaste as well as its texture (is this more or less burning to an autistic sensibility?). Sensory issues aside, I have it on good authority that for performance of a task, breaking things down into a sequence would be very beneficial [4]. The point here is that breaking things down into the component parts of a task might be important if the task has a motor component and apraxia is an issue. Otherwise, who knows?

It should be clear by now that I don’t have much of an opinion of ABA and the argument that we should not be against it because that’s all we’ve got is pretty empty. The folks using this tactic tend to assume that the therapy is harmless. That is probably not true according to the current literature. The problem I have with ABA is mostly around the concept of reinforcement. No matter what the therapy or procedure that ABA therapists adopt from elsewhere, and they have co-opted just about everything in the parents handbook, they always import reinforcement. Because that’s what makes it ‘work’. Most of their undergraduate career is spent learning to construct increasingly sophisticated schedules of reinforcement. The literature says that rewards (reinforcement) can seriously undermine learning – it’s called the “Overjustification Effect” and applies to adults as well as children. When you reward performance extrinsically, you remove the intrinsic reward – the kick you get from the sense of accomplishment. Now consider the average ABA program – and the kid is in there 8 hours every day. What chance that his learning has been seriously derailed by an unrelenting regime of rewards? The answer is that we don’t know with certainty, but there’s certainly a risk there especially apparently if the rewards and this includes the whole range of food reinforcers, do nothing to improve the perception of competence on behalf of the learner or are perceived by the learner as controlling, which includes all of the reinforcers in the behaviourist arsenal. That’s one sort of harm.[5]

There are others, particularly of the sort that are generally unavoidable when therapy is used as a substitute for education. Note, the therapy may be utterly necessary, but the necessity does not mitigate the effects, though a lot of parents like to put a gloss on it. A couple of my favourite glossy bits are as follows.

This is a parent’s view of ABA: “a structured setting in which a trained professional can work with Jason on staged but natural terms that makes sense to him and that he can generalise to other places and times.” Nope, this is not an artificial situation, if we get to call it natural, but then so are schools. ‘There are, however, some grand assumptions and inconsistencies in that short sentence.

From the same parent: “Jason also spends about thirty minutes of the two-hour session leading the activities by selecting what he wants to do most.” The parent earlier informed us that the activities are selected by the therapist, which is just fine but this then becomes a really lousy example of promoting self-actualisation.

Harold talks about changing ‘an autistic child for the better’, a prospect that concerns me not at all, since it’s practically impossible to change anybody, though it would be interesting to speculate what exactly he means by that. This sort of rationale reminds me of Douglas Adams line: “If you try and take a cat apart to see how it works, the first thing you have on your hands is a non-working cat “ - ditto for autistic child. What is it about the child that should be changed? Is there some measure of ‘normal’ available for comparison, because let’s face it - “normal isn’t necessarily wonderful” [6]. Here’s a normal mother, a perfectly nice and loving parent I might add talking about her clever autistic daughter.

“Every single thing she knows, she learned from ABA. This is fact. Except for the things that seem to be her gifts. She spelled words with refrigerator magnets long before ABA therapy. She plays the piano almost in spite of ABA therapy. She taught herself to read without the use of ABA therapy. Adding and subtracting. She was obsessed with numbers and sequences of numbers before ABA.”

Her critical thinking skills may be normal but I wouldn’t want anyone else to learn them.

What is truly baffling about this paragraph is the complete disregard for a lot of learning –Why? And the substitution of ABA - for what? The question needs to be asked. Why couldn’t the therapist or the parent latch on to the ways this kid has so obviously demonstrated learning – real learning, no facsimile and use that tried and true method to have the child learn whatever else they think the child needs to learn? After all, it obviously works. Strange, but this isn’t a singular phenomenon. Michelle wrote a great piece on the above and added the testimony of a Canadian MP. Same thing, a clever child learnt all sorts of things but take a look at what this bloke considers the acme of learning goals?

“He's now one of the most amazing kids -- he will look you in the eye and he will understand you when you ask him to do something.”

Imagine the outcry there would be if this philosophy was applied to the educational system. Autistic kids get a different standard and there are, I suspect, one large and a multitude of little reasons for that. The major reason is that what the autistic child does not do and what Mr Lake referred to specifically is ‘look you in the eye’. In other words there is no automatic emotional response or acknowledgement of the parent in a way that the parent would interpret as such. Every ABA program out there starts with the teaching of eye contact on the principle that joint attention and compliance, both signalled by eye contact, are the keys to learning. They may very well be, for a typically developing child, but we have it on very good authority that this may not at all be the case for autistic children, far from it. It is becoming quite clear that autistic perception is a different breed of normal and that by and large it is super sensitive. The face is apparently such a busy landscape that paying attention to both it and doing anything else simultaneously may be impossible. Pushing for this sign of normal may be the worst thing you could do, no matter that it fulfils an emotional need of the parents. One could conclude that the towering edifice of ABA therapy is built on a total lack of empathy. Empathy is, after all, the ability to imagine things from someone else’s perspective.

So there it is. I am not ant-ABA, which smacks of blind opinion with nothing much in the way of foundation, so much as very critical of it. Something that completely escapes the zealots and idealogues like Harold, is that things don’t change unless there’s a concerted push. So a therapy like ABA, which doesn’t have an empirical leg to stand on, is propped up and continues to be propped up by parents traumatised into overlooking its gross deficiencies for lack of an alternative. At least that’s what they’re led to believe. Though it needs a fair amount of drastic surgery to make it a better fit for autistic learning and sensibilities, it has some things going for it, like structure and single therapists rather than processions of them, making the environment more predictable. It would be better if the structure imported what we know of the learning and perceptual styles of autistics and ABA is not well suited to learning from other professional areas – too insular by far and they aren’t scientific so they’ve always got that internal handicap. It makes the parents feel that they are doing something. It’s great for the kids that the parents now have ‘expectations’, whereas before it was mostly worry.

As for the ‘canard’ of doing nothing, I’m fairly amazed that Harold threw that one into the ether. But that’s a lawyer for you. If you don’t have the facts, play the person. It usually obfuscates the issues for a while. But this is not a court of law with a memory span limited to the case in question. Not at all a good strategy as we know from experience, with a great tendency to backfire.

End Notes

1. Poor Harold. I doubt that he’s capable of understanding that lots of folks might find the concept of a liberation front, with all the sequelae of power plays, prosetylising, slogans and propaganda, faintly ridiculous. But then he hasn’t had the benefit of DKM’s wisdom. Here’s David K March on a very similar concept – Aspergia.

“From what I can see, this "Aspergia" thing has a 350-degree

blind-spot. It's self-absorbed, self-indulgent, and reckless in its potential effects for those of us who have no choice but to function in NT society. I don't want to be "represented" by these people any more than I want to be "represented" by Dr. Skulldug Fraudulini, Psy.D.”

Frankly, if there were such a thing as an Autism Liberation Front, it’s not likely that I’d be among the membership.

Editorial note: The link to the pic of the ALF was removed temporarily until I checked that it would be OK to provide a link. It is in the public domain.

2. There is no person alive who could be said to be an ND’er, unless you happen to believe in multiple personalities, which I don’t. A single person cannot be neurodiverse.

3. This is worth a post all on its own. I was thunderstruck, appalled, amazed and a whole lot of other adverbs to find just how unqualified ABA personnel are to deliver any kind of therapy involving biological attributes.

4. Amanda Baggs of the blog ballastexistenz said to me once that this was important for her, so I would guess that it is important for a lot of autistic folks though maybe not everyone of them and maybe not for every task. I’d like to go back in history and unearth Tolman, who made the very important distinction between learning and performance.

5. Consider the reports of parents about their children falling apart without their ABA program. That could quite literally be true. The thing about etching new pathways in the brain, rewiring, that ABA practitioners like to allude to, is that some paths are rather easily laid and very difficult to eradicate. This is pure speculation, but I did wonder when I heard some of the reports. Addiction medicine tells us that addiction, correctly speaking is the etching of the dopaminergic pathways in the reward system of the brain. Specialists recommend drugs like naltrexone to assist the withdrawal phase. If, as seems quite plausible, these kids have become addicted to rewards, then perhaps they need medical assistance to get over it.

6. Dinah Murray’s line.

Conduct Unbecoming a Reverend

2007-03-02T15:20:00.000-08:00

Dear Bishop Kammerer

I note that the Women’s Division is hosting a conference on June 6 –7 2007 to address the issue of mercury poisoning through vaccines and that the Division has voted $5000 towards this project. I would imagine that the impetus for this educational effort comes from Reverend Lisa Sykes through her experience with her son’s autism, which she attributes to mercury in vaccines. It appears from your website that this issue is being framed as the traditional David versus Goliath, with the United Methodist Women’s Division firmly in the role of protecting the weak and the vulnerable from the machinations of powerful interests. Appearances can be deceptive.

Reverend Sykes is a fervent proponent of the “Lupron Protocol”, a means of treating autism in children by blocking the synthesis of steroid hormones, a form of chemical castration [1]. This theory is the invention of Dr Mark Geier and his son Mr David Geier, who have taken out a patent on the Protocol [2]. Reverend Sykes plays a prominent role as a member of the Institutional Review Board (IRB) overseeing the Protocol [3]. My purpose is not primarily to debunk this theory, but to point out that the deconstruction of this piece of pseudoscience necessarily casts the behaviour of Reverend Sykes in a very poor light. Her conduct in this enterprise appears to be incompatible with her calling.

I should emphasise that I am not impugning her motives. With no doubt the best of intentions, Reverend Sykes has spent considerable time touting this treatment at ‘alternative’ autism conferences and other venues.[4] Her faith in this remedy is such that she enrolled her son as one of the first patients for this novel treatment protocol. Her faith in the matter, however, is not informed by anything called scientific research or mainstream medical opinion.

The “Lupron Protocol’ rests squarely on three unsupported assumptions; that autism is a species of mercury poisoning through the past use of thimerosal preservative in vaccines and that mercury is trapped in the body by forming sheets with testosterone. Following from these assumptions, removing the mercury from the body (chelation) does not work because the high testosterone in autistic children (hyper-androgenicity and assumption three) effectively prevents its being removed, particularly from the brain. But, by lowering the level of testosterone through chemical castration (Lupron injections), chelation can do its job. There is no sound peer reviewed evidence that mercury in thimerosal at the levels given in vaccinations has ever harmed anyone or caused autism. A recent Daubert hearing at which Dr Mark Geier was the expert witness noted that:

It is also significant in the review of his methodology that Dr. Geier could not point to a single study that conclusively determined that any amount of mercury could cause the specific neurological disorder of autism. [5]

The Institute of Medicine of the American Academy of Sciences in their 2004 comprehensive review stated that there is no evidence of any link between autism and the mercury preservative thimerosal in vaccines [6]. The second pillar of this protocol, namely the claim of the Geiers that testosterone traps mercury in sheets, is fraudulent [7]. The reference they give refers to the preparation of a pure crystal for the purposes of crystallography. It has never been demonstrated that this reaction occurs in the body at 37 degrees Celsius, though it may occur if you first dissolve your autistic child in hot benzene. The third assertion that autistic children are inclined to hyperandrogenicity is at this point, an unsupported hypothesis. There is no cited evidence that they are and good evidence that they do not have higher testosterone levels than do other prepubescent children. A recent study from the National Institutes of Health concludes that:

Levels of adrenal hormones were not impressively different between the autism/ASD and control groups. This suggests that earlier sexual maturation is not the explanation for our results [8].

Given the shaky foundations for this Protocol, wise counsel would have questioned the immediate use of a powerful chemical castration drug, Lupron, on children, based on what is at best, a flimsy hypothesis. It is apparent that Reverend Sykes in her zealous pursuit of treatment for her son has been able to ignore far too many signs of dishonesty and blatant deception.

The most obvious of those and of greatest concern ethically is the composition of the IRB overseeing the Lupron Protocol [9]. This IRB is composed of three members of the Geier family, a business associate, a dental hygienist, a lawyer and the Reverend Lisa Sykes, whose son is one of the research subjects. The guidelines set down for an IRB are explicit:

Each IRB shall have at least five members, with varying backgrounds to promote complete and adequate review of research activities commonly conducted by the institution. The IRB shall be sufficiently qualified through the experience and expertise of its members [10]

Contrary to those guidelines, there is no member with the requisite expertise in Biochemistry, Paediatrics or Endocrinology, the three fields that should be represented in hormone research in children. The rules covering the composition and function of IRBs, are there to impartially guide research and safeguard the human participants. That these rules have been flouted is obvious in that only two members of this IRB are eligible to vote to approve the research, the dental hygienist and the lawyer, and then only if they are clear of conflicts of interest. The others are barred because of their being family members, research participants or having a vested financial interest in the outcome. Reverend Sykes should be asked to explain her presence on an IRB, which, as constructed, cannot fulfil its legal and ethical obligations to its young experimental subjects.

There is a second irregularity with this IRB. Dr Mark and Mr David Geier published the preliminary results of their Protocol in an article in Hormone Research [11]. The article cites their IRB as having approved the research. However, it appears that the IRB was only established in March 2006 and the research that it was supposed to oversee took place between November 2004 and November 2005.

There are many irregularities in the administration of the Lupron Protocol, which could not have occurred if the IRB was a duly qualified body. The sole use of Lupron in children that is approved by the US regulator is for the rare condition of central precocious puberty. The insert for Lupron states that the diagnosis should include the following

2. Clinical diagnosis should be confirmed prior to initiation of therapy:

• Confirmation of diagnosis by a pubertal response to a GnRH stimulation test. The sensitivity and methodology of this assay must be understood [12]

The pre-testing of autistic children for the Protocol as carried out by the Geiers and meticulously documented by Kathleen Seidel [13] runs to between $ 7,000 to $10,000 and includes some esoteric genetic tests, which are currently experimental. It does not include a GnHR stimulation test. The test, which is crucial to the diagnosis of central precocious puberty and for the monitoring of treatment [14] is missing from the testing array of these autistic children. Incidentally, the usual work-up for central precocious puberty, which does include a GnHR stimulation test cost around $650 in 1999 [15].

As already stated, Lupron’s sole FDA approved use in children is for treating central precocious puberty. But, Dr Geier has ‘branched out’ as he put it and in his own words urged health insurance companies to pay for Lupron because it is also used to treat serial sex offenders.in the criminal justice system. Here is Dr Geier at the U.S. Autism and Asperger Association (USAAA) conference. [16]

what we’re trying to do is get rid of their aggressive behavior so the parents can keep them, because the state keeps saying they’re going to take them away. Now here, we’re not on new ground. The state does this a lot, and in fact, knock on wood, so far, I’ve gotten every health plan — we’ve got about eighty kids — we’ve gotten every health plan to pay for the Lupron. While on the fourteen-year old it was interesting. They said, “we can’t pay for the Lupron, he doesn’t have precocious puberty, he’s fourteen.” And I said, “I didn’t write he has precocious puberty, I wrote he has hyperandrogenemia, high testosterone.” And they said, “we never do that.” And I said, “Oh really? Don’t you have any eighteen to twenty year olds that the court orders —” “Oh yeah, once a month.”

Autistic children can be treated as sex offenders apparently. The branching out has also included major changes to the Lupron protocol that is recommended by the manufacturer. Some of these children are getting twice the recommended Lupron depot shots (given every 14 days instead of 28 days), plus daily sub-cutaneous Lupron shots plus Androcur, an androgen antagonist not FDA approved for children, because it has been largely replaced by Lupron.. But none of this is recommended for children nor could ever be recommended for children in any country, which has a functional child protection service. I would urge you very strongly to find a paediatric endocrinologist in your area and get his opinion on the ‘Lupron Protocol’ as practiced by the Geiers. [17]. You would have to add that none of the autistic children undergoing this drastic treatment has a diagnosis of central precocious puberty or hyper-androgenicity. The test that is crucial to that diagnosis, the GnRH stimulation test, has not been done.

Reverend Sykes has also acted in an editorial capacity for Dr and Mr Geier, who expressed their gratitude on page 5 of Early Downward Trends in Neurodevelopmental Disorders Following Removal of Thimerosal-Containing Vaccines. [18] That article consists of two parts. The second part is practically a verbatim plagiarisation of the draft manuscript by Verstraeten et al, titled Risk of neurologic and renal impairment associated with thimerosal-containing vaccines, which is in the public domain on the Safeminds website. [19] No special expertise is required to spot the gross similarities. Worse, Reverend Sykes is very familiar with the contents of the Verstraeten manuscript having cited it in her own work as an autism advocate. [20]

The link between autism and mercury in vaccines has been promoted by Dr Mark Geier and his son David in six articles based on the contents of two government databases, the Vaccine Adverse Events Reporting System (VAERS) database maintained by the CDC and the California Department of Disability Services (CDDS) database. Reverend Sykes and other zealots of a similar persuasion choose to ignore the warnings issued by the CDDS and the CDC about the limitations of these databases. The American Academy of Paediatrics wrote an article outlining in considerable detail the ways in which Dr and Mr Geier have misused the VAERS. [21] For a scholarly article it is just barely polite. The Geier’s interpretation of the CDDS data has been similarly exposed as a species of statistical malfeasance. [22] The organisers of the June event should be aware that the CDDS data, if interpreted correctly, continues to refute the notion that there is a link between autism and mercury in vaccines. Though mercury has been removed from the standard childhood vaccine regime for many years, the number of 3-5 year olds with autism continues to increase. [23]

In the ordinary course of events, I would have been loath to become involved in criticising a parent for her attempts to do the best by her child, even when I would have disagreed vehemently with her conclusions. That was certainly the case up to the point when Reverend Sykes started championing the Lupron Protocol and extolling the Geiers as bona fide researchers in the field of autism. There are two basic reasons why this is unacceptable. Primarily, a Christian minister is engaging in behaviour, which is potentially harmful to children, in direct violation of her sworn promise to look after the vulnerable. Professor Simon Baron Cohen of Cambridge University assessed the risks as follows.

I am aware that the Geiers are citing our work to justify their treatments involving lowering testosterone levels in autism. I have never advocated for this treatment, and indeed am opposed to such treatments on two grounds: ethical (manipulating hormones affects many systems in the body and mind, many of which do not stand in need of ‘treatment’) and safety (such treatments may carry risks, many of which are unquantified).[24]

Secondly it appears that this leader of a Christian community is perfectly capable of any amount of moral relativism in pursuit of a personal goal.

Of minor importance, the Reverend Sykes is disseminating, quite unconsciously along with her proselytizing of the Lupron Protocol, the notion that to be Christian is to be credulous. I look to the governance of the Uniting Methodist Church to bring one of its own back into the fold.

Sincerely

Background and References

1. A comprehensive review of the Lupron Protocol by Ms Kathleen Seidel can be seen here: [reference: http://tinyurl.co.uk/jyeo]

2. Patent application: [reference http://tinyurl.co.uk/akzr]

3. Membership of the IRB:[reference: http://www.neurodiversity.com/geier_irb.pdf]

4. The video presentation given by Reverend Sykes: [http://www.autismmedia.org/media4.html].

5. Transcript of a recent court case for which Dr Mark Geier was the principal expert witness. [http://www.neurodiversity.com/court/rhogam_decision.pdf]

6. IOM review: [http://newton.nap.edu/catalog/10997.html#toc].

7. Their theory that testosterone forms sheets is discussed in some detail here: [http://www.autismmedia.org/media4.html: Part 2)] The reference that they rest their theory on is here: [http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=5756987&dopt=Abstract]. This is the method for preparing a mercury chloride compound of testosterone for crystallography, which combines equimolar amounts of testosterone and mercury chloride in hot benzene, not something that happens at body temperature.

8. The biochemical rationale that the Geiers use for their theory of hyperandrogenicity is that ASD children with low glutathione do not convert DHEA to DHEA-S and since alternate pathways are blocked, they convert their steroid precursors mostly into testosterone. The NIH study Elevated Levels Of Growth-Related Hormones In Autism And Autism Spectrum Disorder, J. L. Mills, M. L. Hediger, C. A. Molloy, G. P. Chrousos, P. Manning-Courtney, K. F. Yu, M. Brasington, L. J. England, casts considerable doubt on this hypothesis [http://www.cevs.ucdavis.edu/Cofred/Public/Aca/WebSec.cfm?confid=238&webid=1245]. The authors found that ASD children are in fact twice as likely as controls to have detectable DHEA-S. The innocent explanation for not producing DHEA-S is simply the prepubescent status of children.

9. IRB composition: [http://www.neurodiversity.com/geier_irb.pdf]

10. Guidelines for IRBs [http://www.hhs.gov/ohrp/humansubjects/guidance/45cfr46.htm#46.107]

11. Geier, M, Geier D - A Clinical and Laboratory Evaluation of Methionine Cycle-Transsulfuration and Androgen Pathway Markers in Children with Autistic Disorders [http://content.karger.com/ProdukteDB/produkte.asp?Aktion=ShowAbstract&ProduktNr=224036&Ausgabe=232055&ArtikelNr=94467].

12. Manufacturer’s directions: [http://www.fda.gov/medwatch/safety/2006/Feb_PI/Lupron_PI.pdf]

13. [http://www.neurodiversity.com/weblog/article/110/]

14. Margaret L. Lawson and Nini Cohen, A Single Sample Subcutaneous Luteinizing Hormone (LH)-Releasing Hormone (LHRH) Stimulation Test for Monitoring LH Suppression in Children with Central Precocious Puberty Receiving LHRH Agonists, The Journal of Clinical Endocrinology & Metabolism Vol. 84, No. 12 4536-4540 [http://jcem.endojournals.org/cgi/content/full/84/12/4536?ck=nck].

15. [http://www.aafp.org/afp/990700ap/209.html].

16. [reference: Kathleen Seidel: http://neurodiversity.com/weblog/article/114/pharmaceutical-cornucopia]

17. ibid.

18. [http://www.jpands.org/vol11no1/geier.pdf]

19. [http://safeminds.org/legislation/foia/VSD_VerstraetenJune2000.pdf].

20. [http://www.fda.gov/OHRMS/DOCKETS/dailys/04/nov04/111504/04p-0349-sup00001-vol1.pdf].

21. [http://www.aap.org/profed/thimaut-may03.htm]

22. [http://goodmath.blogspot.com/2006/03/math-slop-autism-and-mercury.html; and also here: http://interverbal.blogspot.com/2006/03/review-of-early-downward-trends-in_15.html]

23. There are multiple references on the web to the CDDS stats. This blogger does a very thorough analysis every quarter. http://autismnaturalvariation.blogspot.com/2007/01/hell-fails-to-freeze-over.html

24. A perwonal communication to Ms Seidel. http://neurodiversity.com/weblog/article/107/

email addresses for UMC

weitzel_chris@hotmail.com, EstellePruden@vaumc.org, cooperd@umumr.org, jwinkler@umc-gbcs.org, bmefford@umc-gbcs.org, newsdesk@umcom.org, judicialcouncil@umc.org

Letter to the Canadian Senate

2007-02-26T20:23:00.000-08:00

Honestly, if there was an award for procrastination, I'd win hands down. This should have been completed in early January. Oh well - my favourite quote is " I love deadlines - I particularly like the whooshing noise they make as they go by"

Dear Senator Eggleton and Members of the Standing Committee on Social Affairs, Science and Technology - Enquiry into Autism

I have been following the deliberations of your committee with a great deal of interest. The focus on such a relatively neglected area with the united resources of the range of world-class expertise available in Canada is, I think, an historic event. The developments here will almost certainly be followed around the world. In a parallel process, the introduction of Bill C 304 seeking to amend the Charter to mandate one treatment option for autism as medically necessary is also of interest. This controversial Bill is probably dead in the water for political reasons, mainly the setting of an unwieldy precedent in specifying a particular condition and a particular treatment in the Charter. However, the manifold reasons for rejecting this Bill say quite a lot about the current state of play in autism treatment and research and those reasons should also inform future directions.

The primary reason for rejecting Applied Behavioural Analysis (ABA or sometimes IBI) as a medically necessary treatment modality for autistic spectrum folk is that, prima facie, it is inappropriate for the majority of the spectrum. I note that Mr Murphy’s wording of the Bill specifies autistic spectrum rather than autistic disorder. A full three quarters of the spectrum have no cognitive disability. [1] So for 75% of the broad spectrum, it would be difficult to justify the use of a technique, which prides itself on teaching concepts and processes in tiny incremental steps, with this clientele. To illustrate, Professor Richard Borcherds of Cambridge University, winner of the Field Medal for Mathematics and Dr Vernon Smith Nobel Prize winner for Economics are both denizens of the spectrum. This cognitive deprivation curriculum is manifestly not the technique for the entire spectrum. These two represent an extreme to be sure, but it needs to be said, the continuous portrayal of the opposite picture of profound disability and mental retardation also represents an extreme as the true face of autism. Like the rest of humanity, the ‘truth’ is somewhere in the middle. Whether this method should be used for the remaining 25% is a separate and debatable question.

The second reason for rejecting this Bill is that the technique is in the class of ‘not proven’. ABA is essentially based on operant conditioning. It is yet to be proven that operant conditioning really works as an educational tool in any non-trivial sense with rather complicated organisms such as humans. It’s hard enough to apply it to less complicated animals under very controlled conditions.[2] I note that there seems to be some consensus among the committee and the professions that a web-based resource should be made available that specifies the evidence base of the various treatments for autism. Dr Bryson in her appearance before the Committee referred to operant conditioning as scientific fact and that is the assumption of a great many behavioural psychologists. Assumption, however, is not fact and it would be much appreciated if Dr Bryson could point to the references in mainstream psychology journals that attest to the validity of this conceptual framework. Surely if this field enjoys widespread acceptance, then there will be ample support for it beyond the sheltered workshop of the behaviourist academy. The problem appears to be that behaviorism as conceived in the analytical sense is something of an odd duck. Unlike all the Sciences and the majority of schools of thought in psychology, behaviour analysis has no theories, which is very helpful in avoiding having to pay the falsificationist piper but does not inspire confidence [3]. I refer the reader to Noam Chomsky’s famous review of ‘Verbal Behavior’ for the definitive critique of operant conditioning as applied to a complex human behaviour - language. It has never been improved on, or really answered. Alarmingly, though Verbal Behaviour (VB) programs are sprouting like mushrooms, Mark Sundberg, a well known figure in ABA circles said the following at a 2005 Behaviourist symposium.[4]

“There is much more research that needs to occur before it could be said that the necessary and sufficient empirical supports exist.”

The proliferation of VB programs points to the need for ABA/VB practitioners to have some kind of credentialing. It seems that practitioners in their VB programs have taken the roles usually assigned to speech language pathologists. Do they have the appropriate academic background and training for this? Similarly, aspects of ABA programs target the acquisition of fine and gross motor skills for various tasks. Do ABA practitioners have the necessary occupational therapy and physiotherapy backgrounds to deliver these therapies competently? The Committee has heard of one autistic who remained non verbal to middle age when it was recognised that a physical problem was a large factor in his lack of language acquisition.

A third reason for rejecting the mandatory use of ABA as a therapy is that the Canadian Government could find itself in the unusual position for a secular democracy, of prosetylising religious dogma. Fundamental to behaviour analysis is the idea that the external environment, either the current one or the evolutionary one is responsible for what people do. What are not relevant are things like creativity, self determination, personal responsibility, free will, volition, judgement, - all the attributes that make humans agents of their own destiny. These beliefs are articles of faith rather than Science and it’s easy to see why they are necessary to the concept of behaviour analysis. The major criticism Chomsky made about behaviourism was the lack of precision in definitions, a criticism levelled as recently as 2003 [5]. Terms such as stimulus, response and reinforcer meant whatever you wanted them to mean. Add that to the post hoc attribution of significance to events under analysis and the possibility that people could behave on a whim has to be rejected or your ‘scientific’ analysis becomes so much wishful thinking. Like all materialist philosophies, there seems to be an impetus to lop off the human bits that sit uneasily within the framework rather than adjust the framework to the inconvenience of a human liking for autonomy.

The fourth reason for rejecting this therapy is that on balance the results are a poor match for the claims made for it and for around forty hours a week at a cost of up to $60,000 a year, parents have the right to expect a lot. The trouble with a therapy framed around a naïve inductivism operating in a form of Jamesian Pragmatism is that it’s a long way from what a scientist would recognise as the scientific method.[6] Not surprisingly, when confronted with the scientific method the claims made for this therapy have usually fizzled. Every enthusiastic ABA proponent points unerringly to the classic 1987 Lovaas study, showing an incredible 47% success as measured by gains in IQ and survival in mainstream classes. The critiques of this study are many and the most comprehensive of them was a product out of British Columbia [7]. I refer the reader particularly to the questionable use of IQ as an outcome measure and the sex ratios of the experimental and control groups. This was not a true scientific study because the children were not randomly assigned to each group. There have been just a few studies like the Lovaas study, which had control groups, but only one that followed the scientific method in that there was random assignment of children to the experimental and control groups and the evaluators were truly blind to that placement.[8] The results were not so impressive. 13% had as good an outcome as Lovaas’ successes, but there were no differences on measures of language, socioemotional functioning or adaptive functioning. Is this even above what a placebo such as 40 hours worth of one on one play therapy would do? Possibly not.

Dr Marianne Ofner testified before the Committee that the Sallows and Graupner study was a ‘replication’ of the 1987 Lovaas study [9]. That claim is outrageous and incidentally, the main reason for this missive. In its primary aim, to prove beyond a shadow of a doubt that it was indeed possible to get the same results that Lovaas did, Sallows et al failed and spectacularly so. Their experimental group was outperformed by the control group 2:1. When that sort of thing happens the usual interpretation is that ABA has nothing to do with the outcomes since less therapy and less professionally supervised therapy has vastly better results. I’m sure the Canadian government would be delighted to cut back on the number of hours required and the qualifications and experience of the therapists. Less is more and we can save a bundle! I doubt the parents would be so happy. There is another Canadian study, which came to the same conclusion. [10] The therapy does not seem to be the relevant factor.

The final reason for not mandating this therapy is that it is not possible to ignore the very negative effects found with a sizeable minority of children. Looking at the Sallows and Graupner study, there were some children whose progress over four years seemed to be entirely backwards. It is therefore the untested hypothesis that ABA can be harmful. Those children may have regressed anyway, but that is an assumption.

The only constant in autism intervention, as is borne out for ABA and a motley collection of less reputable therapies, is the absolute disjunction between the actual results versus the claims made for the intervention. The reason, as is the case for any other field of research, is I think an a priori assumption - this should work, this ought to work and just to make sure we get a chance to do it, let’s also throw in the terrible cost to society of not giving intervention X a chance before the child turns 4 or 5 or 6. This is not an ethical way of doing things and not an efficient or cost-saving method of doing things either. There has to be a better way and surely it cannot be controversial to get the evidence before implementing the therapy. Autistic children cannot continue to be the research fodder for successive waves of academics and therapists. They are also not the designated recipients for one therapy.

There are other promising avenues out there. Aldred et al showed the excellent results that can be obtained from manipulating environmental variables, in this case the parent not the autistic child and no operant conditioning required.[12] It is apparent that autism research has recently joined the cognitive revolution, about forty years behind everybody else but better late than never. Mottron et al of the University of Montreal are probably the first to objectively look at what autism is, what makes it tick without reflexively trying to stamp it out.[13] Surely if there are to be interventions they should be based on what Mottron et al have turned up. Sallows and Graupner may not have been able to replicate Lovaas but they used the vast amount of data they acquired to try to find out what factors in the child led to what outcomes. This is the natural starting position – what is autism, before deciding what should be done about it.

Brigitte Harrisson testified before your Committee that ABA could be good if it was adjusted to an autistic way of thinking “if there was a national will to do so.” For this to happen there would have to be some sort of gathering together of therapy providers and the sorts of researchers who know something about autistic thinking, including those who know all about autistic thinking without needing a translator - autistic adults. It is fortunate that Canada has such ready access to the ideal candidate. Ms Michelle Dawson is the person I would like to see on any group making decisions about future directions in autism funding and research. With due deference to Dr Szatmari and Dr Fombonne, it’s likely across the very broad array of sub-specialities constituting autism research , Ms Dawson knows more about the current state of play than any single person anywhere in the world. She is herself a researcher and I note that she is principal author of a paper titled “The level and nature of autistic intelligence” to be published in Psychological Science. No doubt some of the researchers you have heard from would be ecstatic to have their work published in such a prestigious journal. Knowledge aside, I trust her objectivity. In the internecine squabbles that characterise the redoubts and battlefields among the various fiefdoms in psychology, it would be positively advantageous to have someone there who would impartially temper the enthusiasms of a Marianne Ofner, or confront the touters of psychological ‘instruments’ of dubious validity. Above all it is absolutely necessary that there be as little translation of the autistic perspective as possible. Ms Kathleen Seidel of www.neurodiversity.com described this problem as follows:

“I think that one major roadblock that many NT educators and service providers have to get past, is the fact that they tend to be "people people" by nature. Many go into the business out of a desire to do good and use their skills productively and connect with others in a way that has meaning to them. When "people people" find themselves in an interaction with someone who isn't the same kind of "people person," the default response is to wonder what that person's problem is. Such a default response, if not acknowledged as such and examined critically, is a source of disrespect.”

I suppose I am being rather forward writing to a Senate Committee, which is not of my Senate. I will, however, have a ringside seat in Ottawa to further developments a little later in the year and for a number of years. This issue transcends both political and national boundaries. To paraphrase Lincoln, the world will note what you do here.

Yours sincerely

1. Morton Ann Gernsbacher, Michelle Dawson, and H. Hill Goldsmith, Three reasons not to believe in an autism epidemic, Current Directions in Psychological Science, Volume 14, Number 2, April 2005, pp. 55-58(4)

2. Timberlake, William, Is The Operant Contingency Enough For A Science Of Purposive Behavior? Behavior and Philosophy, 2004

3.Noam Chomsky, A Review of B. F. Skinner's Verbal Behavior, Language, 35, No. 1 (1959), 26-58.

4. http://www.abainternational.org/ConvArchive/conv2005/program.asp Paper # 383 Symposium Paper

5. Palmer, Daniel K, Specifying Psychology's Observable Units: Toward An Integration Of Kantor's Behavior Segment, Skinner's Operant, And Lee's Deed, Behavior and Philosophy, 2003

6. Steven C. Hayes, Nicholas M. Berens, Why Relational Frame Theory Alters the

Relationship between Basic and Applied Behavioral, International Journal of Psychology and Psychological Therapy 2004, Vol. 4, Nº 2, pp. 341-353

7. Centre for Health Services and Policy Research, British Columbia Office of Health Technology Assessment, Autism and Lovaas treatment: A systematic review of

effectiveness evidence, July 2000

8. Smith, T., Groen, A. D., & Wynn, J. W. (2000). Randomized trial of intensive early intervention for children with pervasive developmental disorder. American Journal on Mental Retardation, 105, 269-285.

9. Glen O. Sallows and Tamlynn D. Graupner, Wisconsin Early Autism Project (Madison) Intensive Behavioral Treatment for Children With Autism: Four-Year Outcome and Predictors Volume 110, Number 6: 417–438 Z November 2005 American Journal On Mental Retardation

10. Eaves LC, Ho HH. The very early identification of autism: outcome to age 4 1/2-5, .J Autism Dev Disord. 2004 Aug;34(4):367-78.

Blueprint for a 21st Century Witch-hunt

2006-10-04T18:33:00.000-07:00

Martijn Dekker famously commented that the internet was for the autistic community, what sign language was for the deaf. At long last, here was a method of communication ideally suited to a disparate population with a preference for the written word as the means. Here, what they had to say could emerge, whole and undistorted, exactly as the author intended, an unheralded and intoxicating experience. But, inevitably, benign tools can be bent to other ends and the same platform that supports groups intent on reaching out to each other in positive explorations of commonality and difference, also supports groups whose purposes are less positive and in some cases, wholly negative.

The cyber village of common interests made possible by the internet, is in many ways quite similar to the mediaeval village of the original witch hunts and neither the motives for nor the methods of witch hunting have changed substantially. The victims of yore were generally the most vulnerable of their social grouping, the elderly, the solitary and the strange. In the odd instance when that wasn’t strictly the case, they were certainly more vulnerable than the perpetrators. The victims in this modern version of an old drama are also the most vulnerable of their society, bearing as they do the stigmata of difference, a diagnostic label of the psychiatrist’s bible, the Diagnostic and Statistical Manual of Mental Disorders, (DSM IV). The particular label of interest to me in examining the modern witch-hunt is Asperger’s Syndrome (AS).

AS make particularly good victims and there seems to be no shortage of villages in cyberspace devoted to informing the general public about the insidious perfidy of this particular group. The scale of perfidy depicted varies widely, but for the purposes of this essay will be confined only to those groups that show the signs of the true witch-hunter: fear mongering and sensationalism, an over-investment in caricatures and no supporting data.

Fear mongering is universal among witch-hunters. From Maxine Aston’s portrayal of the AS as the default perpetrator of domestic violence to Sheila Jennings Linehan’s portrayal of AS as the default perpetrator of child abuse and Kathy Marshack’s FAQ on Asperger’s Syndrome, the picture is one of fear and loathing on behalf of the poor innocents whose lives have been contaminated by this evil presence. Linehan, along with her colleagues from ASpar is a leading proponent of the AS parent equals hazard to children school of witch hunting. The Ann Coulter of anti-Aspergers activism, her evidence for this springs from the divorce courts, anecdotes of sparkling generality from her cohorts or articles which don’t mention child abuse at all. The article that Linehan cites as seminal, that is, pivotal to her thesis, is discussed in detail later. What is notable about Linehan is her total avoidance of the abundant evidence that would effectively contradict her sweeping assertions – the websites of a large number of autistic parents.

Objectification of AS is elevated to an art form by these practitioner’s of witch-huntery. Maxine Aston’s Asperger’s Syndrome in the Counsellor’s Room shows how it can be done. First, his behaviour is expressly designed to make you uncomfortable. Next, the problems in the relationship can be situated in one of two places, the AS or his personality and the primary objective of the counsellor is to sort out which is which. So, although he may have walked in as a tax-paying member of Homo sapiens, he is now a ‘problem’ to be dealt with, not a live human at all in a live relationship with another human being. The partner’s contributions don’t rate a mention apparently. She could be Attila the Hen with half of the DSMIV 301 category under her belt, but that doesn’t matter, when he can be reduced to a ‘label’ and the logical repository of all the problems in the relationship. A stroll through Dr Marshack’s website leaves much the same impression. This is a relationship between an affliction and a candidate for beatification.

The hallmark of this group is to create a caricature and none do it better than the FAAAS website. There you will find a veritable rogue’s gallery of miscreants all bearing the witches’ caul – ‘flat affect’. According to this site, AS all talk in monotones and since their emotions aren’t clearly visible on their faces, the assumption is that they don’t have any. Worse, there are a large number of people, Aston and Marshack among them, who treat this ‘flat affect’ as a blank canvas on which any interpretation of the (non-existent) non-verbal language can be made. Neither seems to be aware that an inability to read non-verbal signals indicates an equal inability to use this form of communication. Aston’s interpretation is that all AS lack empathy. This is contrary to emerging research, which notes very sensibly that there is a world of difference between the method of accessing another’s feelings and the ability to empathise once that state is known. Dr Marshack’s interpretation is worthy of a Victorian maiden complete with fainting couch. Prominent on her site is a sample book chapter from an anthology of stories she has compiled showcasing the plight of the spouse in relationships with an AS partner. This is a sample of the text:

“I have lived with this man for two decades and have become accustomed to this unfeeling style, so did not skip a beat in responding to him. He always needs my help in understanding these simple things. Still speaking slowly so as not to create pain, I said, “Grant, I need your help. I cannot get up. I want you to get up out of bed and come help me stand up so that I can get to the bathroom.”
“Now?!” he said, with great incredulity.
“Yes, Grant. I need you to get up and help me. I cannot move. I am in great pain. I fell to the floor because I have a pinched nerve in my back. You must help me get up.”
“Oh,” he said. “I was wondering what you were doing on the floor.”

Contrast that with this.

the Apperistion of Sarah good did most greviously torment me by presing my breath almost out of my body and also she did immediatly afflect my child by pinceing of it that I could hardly hold it and my husband seing of it took hold of the Child but it cried out and twisted so dreadfully by reson of the torture that the Apperishtion of Sarah good did afflect it with all tha it gott out of its fathers armes to:

Marshack’s overblown rhetoric is equivalent to this sworn testimony from the Salem witch trials. The language of the second may be archaic, but both the lack of evidence for any real wrong doing combined with appeals to emotion to cover the lack of anything concrete are identical.

The problem with caricatures is of course that in order to sustain them you need evidence of one sort or another. One can only assume that it’s the complete absence of real data rather than the art of the anecdote that provokes the sensationalism of the claims of this merry band. Aston is really in a class of her own on this one. Consider this opener in bold and italics from the article cited by Linehan as ‘seminal’.

“The possibility of an adult with Asperger's syndrome should be considered when there is conflict and domestic violence in a family, say counsellor Maxine Aston and children's services manager Ruth Forrester”

That’s clear enough – if there’s domestic violence - look for AS because that’s a reliable source of violence. It’s also a ridiculous assertion. In the UK, there are roughly 6.5 million incidents of domestic violence annually and using vastly inflated numbers, I figured there were around 300, 000 autistics and close cousins (not quite autistic) capable of being in a position to inflict domestic violence. Obviously, there just aren’t enough autistics to go around. Nevertheless, the conclusion to be drawn is unmistakeable. Most AS folks are violently dangerous. Statements such as

“Any serious strategy to assist families must start with the principle of protecting children from significant harm, as well as the unacceptability of violence and intimidation”

.make that very clear, if by some chance you missed the opening salvo. There is no evidence given for this at all. None. Just a short telephone call away from Ms Aston, a resident of Coventry, is Cambridge University and Professor Simon Baron Cohen, Director of CLASS (the Cambridge Lifespan Asperger Syndrome Service). According to the good Professor [1], his data shows that the number of AS in intimate relations who are violent is ‘a small minority’. Unlike Aston, he also warned that his sample is ‘clinical’ so the real prevalence is likely to be less than his data show. In other words, when it comes to violence on the domestic front, AS folks are no more violent than the general run of humanity, which is not what Aston would have you believe.

Aston’s article is incomparable for other reasons. Two out of three of her references are bogus. Aston cites the National Autistic Society UK as having supported certain research (paragraph 3). This is cited to give credence to the notion that this is a serious article, whose contents an organisation like the NAS approves. The NAS have stated categorically that they have no record of having supported any such research. They also characterised the entire article as ‘biased, one-sided and misleading’ [2]. The tragedy is that a number of British social workers have this as their introduction to Asperger’s Syndrome. If that’s not bad enough she also quotes the guru of all things Asperger’s, Dr Tony Attwood.

Attwood1 describes a spectrum of Asperger's behaviour, from the passive to the arrogant and aggressive, and it is likely to be the latter who perpetrate domestic violence.

This is a complete fabrication. The words ‘arrogant and aggressive’ do not appear anywhere in the cited book.

Nor could any reading of the actual reference be construed to read what she attributes to him. Page 169 says something quite different:

“ although the actual incidence of violent offences is remarkably low”

Deliberately misquoting an expert in the field is one thing, but Aston has done something more. Attwood’s words as quoted by Aston imply that psychology has found a 1:1 correlation between arrogance and aggression. If psychology had done so, it would be front-page news. Psychologists of Attwood’s calibre do not make such statements. The final interesting feature of Aston’s article is her unique method of referencing. The reference to the NAS is to the whole website and her reference to Attwood is the entire book, no pages cited. Is there any way that the reader can access the (admittedly fictitious) citations? Community Care magazine apparently found this acceptable. A reputable journal, one would hope, would not, but one could be wrong.

In the rush to jump on the bandwagon of this relatively undiscovered gold mine of possible academic glory replete with books, articles, speaking engagements and the whole panoply of ‘discovery’, even reputable journals, anxious to be ahead of the trends, can be blinded by the magic words ‘Asperger’s Syndrome’. That is the only comprehensible explanation for why the Chronicle of Higher Education saw fit to print the inaccurate and misleading musings of an academic with an education in English literature, who thought she had sufficient know how to diagnose her former colleagues with the Syndrome based on a cursory glance at the DSMIV.

To be successful, witch hunts both ancient and modern, need something in addition to appeals to emotion in place of hard data. In order to render the victims exempt from the usual ethical considerations, evidence for one’s assertions for example, it is necessary to reduce the human element. That is, position them as not quite human, an object. Witch hunters of yore believed that the witch was under the control of the Devil and therefore no longer human like themselves. This modern variety resorts to the argument that AS can’t help what they do because they aren’t aware of the negative sequelae to their actions or inaction. This content free statement, made both by Brenda Wall and Kathy Marshack serves very well to distance AS from humanity by casting them as unaware objects. An unaware object is like a loose cannon. You never know what they’re going to do next. Without this crucial step, there is no salve for the conscience for the nasty consequences the witch hunters are about to inflict. Burning at the stake could be rationalised under the idea that saving a person’s immortal soul and protecting the souls of the vulnerable took precedence over any suffering inflicted. Casting AS as the automatic perpetrator of all kinds of child and spousal abuse can be rationalised again as protection of the vulnerable and again it does not matter what damage is inflicted.

The victims of witch hunts both old and new are faced with the same dilemma – proving a negative. Because of the association -satanic or psychiatric, they must prove that they are NOT hell bent on wreaking violence, abuse, black magic or whatever negativity they are judged, a priori, to be prone to. It cannot be done. It is the oldest of logical fallacies that underpins prejudice of all kinds. AS folk are but the latest in a long line of suitable victims.

[1] Personal communication. Professor Baron Cohen will always answer a reasonable question, which is rather nice of him.

[2] A clarification sent by the NAS Information Officer at the time to a friend of mine. He copied the email to me.