Archive | March, 2007

Katie Wright and Autism Speaks – woo confirmed

29 Mar

For the last few weeks the subject of ire on the EoH maillist has been Autism Speaks, they’ve been the subject of some very nasty descriptions indeed. The reason is that the EoHers knew that Katie Wright, daughter of the owners of Autism Speaks, was taking her son Christian to a DAN! doctor and yet Autism Speaks were keeping this quiet.

Well, as blogged by David Kirby, Katie Wright has now confirmed that Christian is seeing a DAN! doctor (lets hope its not one of the paedophiles or Scientologists) and has gone ‘on the record’ as stating she believes vaccines caused Christians autism.

The mercury militia and David Kirby report this:

Many in the upper echelons of Autism Speaks have rejected any environmental hypothesis and insisted that autism is purely a genetic disorder — though Bob and Suzanne Wright (and the organization itself) remain officially neutral on this crucial question.

But now, Christian is getting better, and that wonderful news could change everything.

Well, firstly, I can’t recall anyone from Autism Speaks insisting that autism is purely a genetic disorder. If they did I think they’d be just about alone. Secondly, ‘Chrisitan is getting better’. Really? How is that described exactly?

“He’s definitely getting better,” Katie told me by phone. “He was a very sick kid, with an extended gut and inflamed intestines. We couldn’t do anything until we got that under control.” But once Christian started to improve physically, she said, he also began to get better emotionally, mentally and cognitively.

When Christian’s gut improved, his parents began trying other, still-unproven treatments like dietary changes (no wheat or dairy) chelation therapy (removal of heavy metals from the body) and methyl B-12, which could help restore a critical process called methylation – a needed tool for detoxification and proper nerve function that is apparently deficient in some autistic children.

“Christian is speaking now, though only when prompted,” Katie told me. “His eye contact is returning, and his crying and tantrums have subsided.” And she said, “His ability to attend has returned. Now he can sit and do his lessons and learn, whereas before he would just lie down and scream in pain, because his abdomen hurt so much. But he still has a long way to go.”

Perhaps most heartening to Katie is that Christian can now tolerate being in close contact with his brother, something that used to send the boy into screaming fits of anxiety.

Well I too am glad that Christian doesn’t have these gut problems anymore. But these aren’t autism and have nothing to do with autism. My daughter, who is also autistic, has never had an ‘extended gut and inflamed inststines’. Thats not to downplay Christian’s problems but its simply not realistic to equate these things with autism.

Christian (who is 5 and yet described by Kirby as a ‘toddler’) displays very similar behaviours to Meg at five (and at three) – she didn’t speak at all, she struggled with eye contact and she had big meltdowns. The thing she has in common with Christian is that their changes have occurred as they have grown older.

Kirby goes on to say:

So how will some Autism Speaks officials react to Katie’s statements? They could fall back on two recent, but highly inconclusive studies that support the autism-is-genetic paradigm, and continue to reject the environmental hypothesis. But I wouldn’t bet on it.

I’m unsure exactly what two recent genetic studies Kirby is talking about as he doesn’t name them but if they are written by decent scientists then I highly doubt they have written an off-the-cuff rejection of an environmental aspect to autism. If anyone does know what studies Kirby is referring to please say so I can check for myself. I find double checking Kirby’s words often reveals interesting things!

But hsi question is a good one. How _will_ Autism Speaks react? They are a ‘house divided’. They have the scientific teams that they inherited from NAAR and they have their ‘in house’ members that are media people. Will they go for the media or for the science? It seems that Kirby and the mercury militia are in no doubt about which way they _should_ go – they want a media driven Autism Speaks. An organisation that abandons science for woo.

It should be noted that the mercury militia are very, very good at media manipulation. From Brad Handley’s full page ads to Katie Wrights levering of Kevin Barry to get onboard Autism Speaks and of course, David Kirby’s fact free and often hilarious debating points. These are not people who let a media chance go unexplored. However, they cannot force science to show something that it does not.

Education data is the new black

26 Mar

Or, more accurately, Education data is the new CDDS.

Up until this year, David Kirby, Lenny Schafer, Rick Rollens et al said that CDDS data was the gold standard of autism data and because rates were rising during the 90’s according to CDDS data this proved that vaccines caused autism. Then they said this would be proved in 2005 – sorry, 2007 – when it was firmly established thiomersal was pretty much out of all vaccines in the US schedule excepting the voluntary flu jab. Kirby went so far as to say that if the CDDS rates didn’t fall by 2007 then this would be a significant blow to the thiomersal theory.

Guess what? No fall. In fact, there was a continued climb.

Next they all said – CDDS? That stuff is rubbish – California is ‘special’. No, no, no, what _really_ counts is educational data. In fact, just this morning, the latest Schafer Autism Report carried new data that showed how autism rates were still climbing.

But hang on….seeing as we _know_ that the amount of thiomersal in vaccines is essentially nil, and tests show that as early as 2002, over 80% of doctors surgeries reported they carried no thiomersal containing vaccines, how can we possibly carry on with the stupendously idiotic hypothesis that thiomersal in vaccines causes autism?

Feh. Never mind. Thiomersal is out of favour these days. These days its all about Aluminium or whatever other vaccine ingredient people want to wring their hands about.

Anyway, here’s a post I came across on EoH today:

I just found this newsletter from last fall- vaccine rates dropping funding short- sounds good to me. Too bad we are not counting AUtism rates like CA.

and it linked to this PDF which says:.

Alarmingly, our childhood vaccine rates have dropped from the highest in the nation to just below the national average. From 90% of two year olds fully immunized to less than 80%.

The inference is clear, right? If only we could count the number of autistic people in Maine up to and including 2006 I bet we’d see them dropping as the vaccine uptake in Maine dwindled. And hey – this should be an easy drop to find in the state that had the highest vaccine uptake in the nation, right? Oh, if _only_ someone had tracked the autism numbers in Maine!!!

Well, worry no more – the great guys at the Vaccine Autoimmune project have. (IE link only, poor web development ahoy!). Lets take a look shall we?

State 2000-2001 2005-2006 Percentage Increase
Maine 150 311 107

Huh??

Wait now…you mean to tell me that vaccine uptake _fell_ over 10% and yet autism _increased_????

Miraculous – whatever can it mean???

New: Autism Parents Forum

25 Mar

I’m launching a new project today primarily for parents of autistic children (of any age) which I’ve called Autism Parents.

I wanted to set up a forum where parents of autistic people who weren’t necessarily interested in the idea of cure could get together and swap hints/tips on parenting in an easier format than a blog could allow.

Its got boards for education, medical, officialdom where you can ask questions or answer questions from other parents just like you and me as well as boards for discussing books/movies/TV programmes and news stories etc related to autism.

Please go and signup, get posting and please – spread the word!

Brandon Williams, dead at 5

23 Mar

2006 was a bad year. The worst of years. A lot of autistic kids were killed by their parents. I got sick of writing about these stories. Not bored, don’t misunderstand me, but sick, really physically sick that a parent could do this to a child. That the parent of a disabled child could do this.

Seems like there’s no respite from this insanity just yet:

Before he died, 5-year-old Brandon Williams was fed sleep-inducing medicine twice a day. His mother, Diane L. Marsh, 39, would sometimes tie him up or plunge his feet into scalding water to discipline him, a sheriff’s official said. On Wednesday night, Brandon died after his mother gave him a lethal dose of 12 Tylenol PMs when he complained of having flu symptoms, the official said.

What the hell can you say about someone who would tie up and scald their own child? That they’re scum? Sub-human? Yes, you can say that but it won’t bring Brandon back.

Reading this report on Brandon’s death makes me despair for the future of humanity. A mother who totured her 5 year old autistic boy, two lodgers who either participated or stood by and watched and a father who apparently never noticed.

Sickening. Please mourn Brandon and remember those who have gone before him. Its pathetic that the one positive we can take from this is that at least he is out of the hands of his parents.

Daubert and the Autism Omnibus

17 Mar

I recently wrote about how the petitioners in the Autism Omnibus were trying to remove the need for their evidence to be scientific by fighting against the ‘daubert’ principle. I concluded that piece with a downbeat message that it was all too possible for petitioners to remove the need for their ‘science’ to actually _be_ science.

A regular reader (who happens to be a lawyer – no, not Wade) passed on a fascinating document (its 120 (searchable) pages – be prepared) to me which discussed the role of Daubert. My reader passed the link on to me with the explanation:

You will see a Court of Federal Claims Special Master, a couple of law professors, and some federal appeals court judges discussing causation and Daubert in vaccine cases.

Its a big (120 page) document so I’m going to concentrate on what these esteemed bodies thought of the role of Daubert in terms of applying it to the Vaccine Act. First a quick recap.

Oversimplifying things, cases tried under the Vaccine Act have almost no standard of evidentiary proof. That suits that Autism Omnibus petitioners as they _have_ no evidence or proof.

Daubert is usually applied in a _Federal_ court and demands that scientific evidence presented to that court is of a good standard of science.

That’s the basic position. If you want to read more about why these two positions are adopted for the differing courts then read the document I’ve linked to. Its just too big to go into all these things in a single blog entry.

So, ordinarily, Daubert would not apply to cases tried under the Vaccine Act. However, this omnibus proceeding is far from an ordinary situation.

JUDGE VOWELL: Well, let’s pick up on the issue of Daubert and Kumho Tire. Those decisions are mentioned nowhere in our trilogy of cases. In a program such as the vaccine program where there are no juries to be unfairly influenced, what role does Daubert play, or what role should a Daubert analysis play?

MS. GREY: I think that, like you said, in many ways they wouldn’t be applicable. We don’t have juries. We have a very sophisticated fact finder. Federal Rules of Evidence, Federal Rules of Procedure don’t apply here.

So that’s the basic positions. However:

MS. GREY: there is a reason why Daubert developed that is still applicable here, and that is to test the basis for an expert’s opinion. Why do we need that? Because when you have an area that is bereft of evidence like this, you don’t have the normal processes of a trial to test the assumption.

So you don’t have cross-examination that’s going to work as well. You don’t have the opposing evidence that will work as well. And that’s why you probably would be well-suited to take Daubert and apply it in this setting, even though you’re not protecting the jury from junk science. There are other reasons that underlie Daubert that would be applicable here.

And what are those other reasons?

MS GREY: You always, I think, want to probe the underlying basis for whatever opinion is being proffered in the Special Master’s Court. We don’t want to just rely on expert credentials alone. You want to see, was there any adherence to professional or technical standards? What is the basis for the opinion?

An excellent point. Only Daubert can give you this. And surely it would be utter madness to make such a judgement without taking a very careful look at _how_ results were obtained when looking at the results themselves. We know that the ‘science’ presented by the mercury militia is on the surface good but when looked at closely starts to unravel like a badly made sweater.

And here’s a paragraph assured to make the Bradstreets and Geiers of this world blood run cold:

Just like any other witness, a scientist, a doctor is going to be subject to biases, to value judgments that are coming from his own setting that could affect his view on the question of causation, which is why you want the Special Master or the trial Court to still probe the basis for the decision rather than just relying solely on the fact that the expert is making that assertion and is well-credentialed in that area.

Yikes. Will Jeff Bradstreet discover a renewed interest in his family again before this all kicks off?

What else?

Mr GREEN: at some point the idea of, okay, put up, expert, what have you got, is something that needs to be done, and Daubert is doing that under the aegis of Rule 702 and the admissibility of an expert testimony. It could be done at the hearing when an expert testifies, but it needs to be done.

It needs to be done. That’s the bottom line. There needs to be a test of expert testimony and Daubert is the way to do it.

But why? I said I didn’t want to go into the nuts and bolts of the legalities but we should maybe talk about why Daubert, which usually only applies in a Federal court setting, should also apply in a Vaccine Act court according to these people.

MS. GREY:…For 100 years, courts would allow treating physicians to testify about causation or about any subject as long as it was an inference that was the type that physicians normally make in the course of their practice. That would be the test; that we wouldn’t look beyond that. But that, as we keep describing, has changed gradually, especially in the last 10, 15 years. Why? What happened, we had an explosion of toxic tort cases, and there were a lot of experts that were willing to testify about causation without real strong scientific studies…… That brought us Daubert [.]

In other words, the sheer amount of new cases revolving around the issue of toxicity and vaccines led to a situation where it was no longer good enough to waive the standard (or lack thereof) of evidence. To prove toxicity, science had to be science. Hence Daubert. Ms Grey goes on to give a good example:

Let me just give you an example that will seem very exaggerated, but it’ll just show my point. If an infant develops a brain tumor after he gets a measles vaccine, this kind of post hoc reasoning would say, the vaccine caused the tumor. This kind of reasoning is going to be rejected by scientists. Why is that? Hundreds of thousands of infants receive a measles vaccine every year. A few of them will develop brain tumors. That’s the coincidence factor.

One of the fascinating aspects of this document is that the Special Master present – Judge Vowell – is also on the Autism Omnibus case as a Special Master (there are three in total). In reference to a non-expert physician opining that a vaccine _caused_ the problem, she asked:

Is it not, though, circumstantial evidence from which other circumstantial evidence I might reasonably infer causation?

The answer given by both Law Professors was essentially ‘no’:

You could take it into account, but it doesn’t qualify it. In other words, Capizzano (another precedent like daubert) probably in my mind went a little bit too far because it’s relying on the treating physician’s testimony to basically make out the whole case, and I think that that’s not strong enough.

There’s no resolution in this document but it seems clear to me – where an increasing amount of cases revolve around a scientific need for scientific evidence – Daubert will increasingly apply.

Yet more Scientology and Autism

11 Mar

After my post on Friday detailing how one of the ‘recovered’ poster children of Generation Rescue was in fact diagnosed, treated and recovered by Scientologists (people who do not, by definition, believe in psychiatric conditions), I was forwarded another piece of information that really did make me sit back in my chair and wonder where this was all leading.

Dan Burton is a Republican member of the United States House of Representatives from Indiana. He is a firm believer in the autism/vaccine connection, being on record as stating:

“My only grandson became autistic right before my eyes – shortly after receiving his federally recommended and state-mandated vaccines”

He has acted in the interests of various parent led organisations who claim to be autism advocates and has become a powerful voice.

However, as the saying goes: behind every great man…

The people behind Dan Burton include (or used to) one Sarah Elizabeth (Beth) Clay who:

Beth Clay is Congressman Burton’s assistant, and Burton is the Chair of the House Oversight Committee.

This puts Ms Clay in a position of some strength with a man who is in a powerful position. In fact, as we can see Ms Clay has lobbied for SafeMinds, one of the largest antivax/autism movements, on numerous occasions.

Ms Clay also runs her own lobbying organisation BC and A International:

During her Capitol Hill tenure, Ms. Clay’s work focused on several breakthrough issues, including: complementary and alternative medicine, dietary supplement regulation, the epidemic rise in rates of autism spectrum disorders…..issues…..mercury and heavy metal toxicity

However, Ms Clay’s CV also includes other activities that are oddly not mentioned on BC and A’s website. She is a Board Member of the Citizens Commission on Human Rights, an organisation that:

CCHR was founded in 1969 by the Church of Scientology and the internationally acclaimed author, Dr. Thomas Szasz.

Yup, Beth Clay, Assistant to Congressman Dan Burton and hired gun of SafeMinds is a Scientologist, or works with them.

We now have several DAN! doctors who are scientologists, several thiomersal/autism lawyers who are scientologists, a ‘cured’ child who was diagnosed (partly), treated and ‘cured’ by scientologists and now one Congressman who’s advisor is a scientologist. We also have one indirect link from scientology to Generation Rescue (in the shape of Julia Berle, founding parent of that organisation and mother to the ‘cured’ child described above) and one direct link from scientology to SafeMinds in the shape of Beth Clay.

Maybe its worth reminding ourselves what Scientology is. According to ex-scientologist, Roland Rashleigh-Berry, Scientology is:

….a vicious and dangerous cult that masquerades as a religion. Its purpose is to make money. It practices a variety of mind-control techniques on people lured into its midst to gain control over their money and their lives

The founder of this cult, L Ron Hubbard, once said:

Writing for a penny a word is ridiculous. If a man really wants to make a million dollars, the best way would be to start his own religion

Or maybe sell snake oil.

Autism and Scientology again

9 Mar

Awhile ago, I wrote a post the detailed the disturbing links between the DAN! movement and scientology. It transpired that scientology – being a movement that is big on non psychiatric modes of treatments is a good fit for DAN! adherents. Both value detoxification for a range of things and it seems Scientologists have not been slow to ingratiate themselves into the DAN! movement. So far, I’ve identified three Scientologists who are also DAN! Doctors. One of them was involved in the death of a parent of a schizophrenic man in 2002.

One of the darlings of the autism/vaccine movement is Julia Berle who’s son, Baxter, was used in a Generation Rescue advert. Ms Berle is a frequent poster to various autism/vaccine groups. Her signature reads;

Julia, mom to Baxter, recovered in 2005, Founding Parent of Generation Rescue

As mum to a recovered child, Ms Berle’s opinion is sought in many places and she never stints from dispensing the advice she got far and wide.

Baxter Berle was diagnosed (at least partly it seems) by Scientologists. If I may quote myself:

Baxter Berle attended a school called ‘The Learning Castle’ which is an alleged elementary ‘feeder’ school for the Renaissance Academy with which it shares a campus (there seem to be about seven separate units on campus all feeding the Renaissance Academy). Here’s a little bit of information about the Director of the Renaissance Academy, Ann Hazen;

Renaissance Academy is truly bringing education back to life through the use of a full academic program, athletics, the Arts, a warm and caring staff coupled with the brilliant study and educational philosophies of humanitarian L. Ron Hubbard.

Yup, they’re Scientologists too.

So Scientologists had a big say in the diagnosis of Baxter Berle. What about his recovery? I was recently forwarded this email by a member of a autism/vaccine group Ms Berle is also a member of:

— begins —

Re: Opinion of Dr. Nancy Mullan ?
Sun Jan 28, 2007 6:25 pm
— In autisminterventionsocal@yahoogroups.com,
“djberle” wrote:

Hey there,

We used Dr. Mullan to recover Baxter. I like that she stays cutting edge on top of all new topics as it relates to autism. She attends numerous conferences to stay current. I also highly respect her availability to parents and compassion to “work with you” on
all aspects (to include financial to some degree). She cares deeply for our children and wants to help them….Our experience with her was very positive. I refer her often to other local. parents. I also refer Dr. Hirani as she helped us as well.

— ends —

So Dr Mullan recovered Baxter. Dr Mullan is also a Scientologist. She is the Medical Director of the Scientology owned Safe Harbor organisation. She also used Dr Hinari who studied under Julian Whittaker – another doctor with Scientology connections.

Here we have a situation where Scientologists have (maybe) diagnosed, treated and recovered a boy. This boy was subsequently turned into one of the poster children for successful recovery by Generation Rescue (of whom Ms Berle describes herself as a founding member).

Maybe I’m just a cynic but this reeks of ‘set up’ to me.

Ayoub/Yazbak/Fombonne

8 Mar

_Jonathon has posted an excellent summation which I entirely agree with on the Ayoub/Yazbak/Fombonne ‘affair’. I’ll include it here and shut off comments, including a link to Jonathon’s post for you to see references and leave comments._

_My one comment is to say that I think that Fombonne has a case to answer. I also hope that he will. I further think that the critical errors Jonathon highlights show clearly that the more outlandish claims that Ayoub and Yazbak have demonstrated correlation between MMR and autism are unfounded. They should’ve just stuck to the genuine and good quality criticism of Fombonne._

_The floor is now Jonathon’s: _

A Review of the Critiques of Fombonne et al. (2006)
Abstract

The critiques of Fombonne et al. (2006) do point some relevant problems with that study. However, they also use some considerably problematic arguments themselves.

Introduction

Fombonne et al (2006) attempts to correlate data between an increase in the number of cases of the Pervasive Developmental Disorders and vaccine use in school children residing in Montreal, Canada. That research failed to reveal any such correlation. In addition the researchers found a prevalence rate of the PDD’s which match what is seen in the US (Bertrand et al., 2001), the UK (Chakrabarti & Fombonne, 2001; and Chakrabarti & Fombonne, 2005), the Faroe Islands in Northern Europe (Ellefsen et al., 2006), and matches data on Autistic Disorder in Japan (Honda et al., 2005)

Recently, two web based articles have been released and promoted based out of the National Autistic Association website. These articles were written by Dr. David Ayoub & Monica Ruscitti for one letter and Dr. Edward Yazbak for the other. These authors raise important and damaging points which call into question the validity of Fombonne et al. (2006). I note however, that not all the points raised in these critiques have equal merit; in fact some of the points raised are most notable for their lack of merit. The points raised in the critiques are discussed below.

Review of Ayoub & Ruscitti

The authors point out that Fombonne et al. (2006) only uses data from only one of Montreal’s five school districts. This district is specifically an English speaking section. The authors accurately point out that a selection bias may have occurred here. In addition the authors note that Fombonne et al. (2006) claimed they could not gain access to the other school districts’ data. The authors then claimed they gained access to this data and make specific claims about a notably higher rate of autism in the school district Fombonne et al. used. I note that these data and analysis methods are absent.

The authors note that English is only the third most common language in Quebec, the largest group being French and the second largest being assorted foreign languages. The authors note that access is restricted to the English speaking school district by a law designed to help protect the French language. However, the authors simultaneously make the claim that this English speaking school is more inclusive than the others. This claim seems contradictory. It is possible that while the English speaking district is more exclusive in general it is in fact more inclusive towards students with disabilities. However this point is not explained.

The authors correctly criticize Fombone et al. (2006) for describing thimerosal laden shots as “nil”. The authors go on to describe vaccines in Canada that continue to use thimerosal. However, the authors fail to note that none of these vaccines are actually required any longer and for that reason exposure should not be comparable.

The authors mention that fourth graders largely participated in a voluntary vaccination program for Hepatitis B, which contains thimerosal. However, the DSM-IV mandates that Autistic Disorder first appear in a child by age 3, even if it is diagnosed later. Fourth graders do not develop autism. Also, and rather remarkably the authors cite Roy et al. (1999) which is concerned with the health and safety including vaccination based on high risk behaviors of street youth in Montreal. The median age of that study was 19.5.

The authors criticize Fombonne in the following terms:

“he ignored the fact that autism rates increased following a doubling of the MMR exposure after 1996 when a second MMR shot was added to the immunization schedule and chose to emphasize that a rise in PDD rates coincided with a decline in MMR coverage rates. Obviously the increased amount of administered viral load to the population was far greater influenced by a doubling of shots administered than by a marginal drop in immunization coverage rates. He likewise ignored the potential impact of mass measles immunization campaigns in Quebec that delivered a second dose of measles to a large number of infants and children throughout 1996. (11) The subsequent rise in PDD shortly after that campaign is clearly depicted in their figures and would lead us to believe this observation supports an association between PDD and MMR exposure.”

The above assumes that the drop in thimerosal was not only made up, but actually exceeded by the increase in MMR dosage. For this explanation to work, one must simultaneously assume that both thimerosal and the MMR can cause autism. A more parsimonious explanation would be that the rate of autism would have risen regardless, which is certainly what we see in other locations including the no longer mandatory thimerosal exposure in California.

The authors also state:

“Numerous reports of higher PDD rates among immigrants have been reported in Canada and other industrialized countries.”

This claim is demonstrated no where in any research. It even seems to contradict some actual research (Kamer et al., 2004).

The authors go on to assert:

“Finally the paper’s observation about rising PDD rates seems to contradict Dr. Fombonne’s well-known contention of the lack of evidence of an autism epidemic. In an Inserm interview, Dr. Fombonne said, “to declare an epidemic, or sensible increase of the prevalence, it would take incidence studies, always the same, year after year, but this data is not available in any country.” (12) The database we obtained from the MEQ represents the type of dataset Fombonne stated was required to detect true increases in PDD. According to one Montreal-based autism organization, data from the MEQ revealed an increase in annual PDD cases in Quebec from 410 (1990-1991) to 4,483 (2005-2006), a nearly 1,000% increase over 15 years. (13) This is staggering and is strong evidence of a real rise in neurodevelopmental illnesses that cannot possibly be solely genetic in nature but supports an environmental etiology.”

The above statement is presents a false problem. An increase in this data set may not be attributable to real change in the actual number of cases. The system could be open to a lack of control for the six threats to statistical validity. This is a well known problem in other administrative data sets in the world of autism.

Review of Yazbak

The author submitted an letter to the editor detailing concerns about uptake of the MMR rate in Montreal and the increase in the PDDs. The editor forwarded this comment from Dr. Fombonne:

“This person is known to pursue the MMR-autism agenda at all
costs in order to ‘demonstrate’ a link he strongly believes in. The only way ahead is to encourage him to do independent research. All controlled epidemiological research thus far has concluded to the absence of such a link.”

the editor of the journal had this to say:

“As a note, I believe the evidence of no link between MMR and Autism is sufficient. It’s not worth publishing more on this subject. We will not be publishing this exchange of correspondence.”

I disagree with Dr. Fombonne’s approach to this situation. It is not relevant that Dr. Yazbak believes in a vaccine etiology of autism. I also disagree with his failing to address Dr. Yazabak’s criticisms which are specific and serious.

I also heartily disagree with the editor’s refusal to publish Dr. Yazbak’ criticism. While it is certainly his job to ensure that all matters within the journal merit inclusion under a serious scientific aegis, Dr. Yazbak’s criticisms are specific and fall into known categories of scientific criticism. Whether or not he believes it has no beating on his responsibility to publish scientific criticism.

However, given the title Dr. Yazbak selected “Far-Fetched”, perhaps the editor had ground to refuse this letter or at least demand that it be re-titled. Pediatrics is a serious academic journal of high standard. In most such journals while a given level of sarcasm and dismissiveness is permitted, this seems to have crossed the line of acceptability.

Dr. Yazbak goes on to assert:

“When he was in France, Dr. Fombonne was a well known psychiatrist who published articles on psychiatric topics. He was still a psychiatrist when he moved to England …until Andrew Wakefield suggested that the link between MMR vaccination and autism should be further investigated and suddenly …Dr. Fombonne became a “psychiatrist / epidemiologist” and a consultant to the UK medical authorities on MMR vaccination and autism”

The Wakefield controversy began in 1998. So:

Fombonne, E. (1996). Is the prevalence of autism increasing? Journal
of Autism and Developmental Disorders, 6, 673–676.

Fombonne, E. (1997). The prevalence of autism and other pervasive
developmental disorders in the UK. Autism, 1, 227–229.

QED.

The author further asserts that:

“It is obviously customary to disclose sources of funding, Disclosing sources of “Non-Funding” on the other hand is unusual. In any case, it is nice to know that Dr. Fombonne’s research was never funded by the “Industry”.”

This is easily explainable in that Dr. Fombonne’s work has been informally criticized as being supported by the pharmaceutical industry, possibly with the intent that he would manipulate the data in favor of finding no association. This statement may have been given to help put such non-sense to rest.

Conclusion

It is important to remember that the weak criticisms in the critiques above do not remove the genuine and quality criticisms. The authors do point some genuine problems. The failure of both editor and Dr. Fombonne to make adequate response is also disagreeable.

By the same token some of the criticisms are remarkable for their lack of relevancy or factual basis. There are problems with these critiques that have a real potential to mislead others. It is to be hoped that the NAA and the authors will take steps to amend this, leaving their better criticisms intact.

See references and leave comments on Jonathon’s site.

Airbrushing science from causation

4 Mar

Another update from the Autism Omnibus proceedings. This one I find worrying. It essentially presents two things for the courts consideration from petitioners (those who think vaccines cause autism):

1) That the scope of the hearings does _”not”_ :

…limit the scope of these proceedings to only those cases with a formal diagnosis of autism

2) That ‘Daubert’ is not utilised as the evidentiary standard.

The first one I find very worrying indeed. This essentially opens up a never ending series of possible cases surely? It also raises the ugly question of the honesty of the people raising this legal case. These are parents who hitherto have described their children as those who have been made autistic by vaccines (either just thiomersal or just MMR or a combo of both). Now, apparently, it is enough that:

…the injuries at issue here include neurodevelopmental disorders _similar_ to autism…

I have to wonder: just how many of these 4,700+ children have actually been diagnosed as being autistic? And how many are children being made to act as Trojan horses for a possible cash windfall for their parents? A disturbing, uncharitable thought to be sure but I don’t know what else to make of this.

Even more worrying is the petitioners attempts to make sure Daubert is not used as the means of determining evidentiary standard.

Lets remind ourselves of what Daubert is. Daubert is a legal precedent which:

[is] raised before or during trial, to exclude the presentation of unqualified evidence to the jury. This is a special case of motion in limine, usually used to exclude the testimony of an expert witness who has no such expertise or used questionable methods to obtain the information.

In plan terms it means that crap evidence cannot be presented to a court. I’m going to quote from Wikipedia directly:

In Daubert, the Supreme Court ordered federal trial judges to become the “gatekeepers” of scientific evidence. Trial judges now must evaluate proffered expert witnesses to determine whether their testimony is both “relevant” and “reliable”; a two-pronged test of admissibility.

a) The relevancy prong: The relevancy of a testimony refers to whether or not the expert’s evidence “fit” the facts of the case. For example, you may invite an astronomer to tell the jury if it was a full moon on the night of a crime. However, the astronomer would not be allowed to testify if the fact that the moon was full was not relevant to the issue at hand in the trial.

b) The reliability prong: The Supreme Court explained that in order for expert testimony to be considered reliable, the expert must have derived his or her conclusions from the scientific method. The Court offered “general observations” of whether proffered evidence was based on the scientific method, although the list was not intended to be used as an exacting checklist:
– Empirical testing: the theory or technique must be falsifiable, refutable, and testable.
– Subjected to peer review and publication.
– Known or potential error rate.
– Whether there are standards controlling the technique’s operations.
– Whether the theory and technique is generally accepted by a relevant scientific community.

What this boils down to is this – Daubert ensures that science presented as evidence is _good science_ . The petitioners are fighting hard to try and make sure Daubert does not become the way the omnibus case is judged:

…the notion that Daubert should provide the substantive criteria for resolving general causation issues in the omnibus proceeding ought to be explicitly dismissed.

Why? Well they _say_ its because Daubert is procedural, not practical, that Daubert interprets _Federal_ rules of evidence that do not apply in the Omnibus and that it is based on development of expert evidence through revealing documents which is not available in these proceedings.

Uh-huh, and of course the fact that Daubert demands a _scientific_ level of proof has nothing to do with things. Right.

Hilariously, what the petitioners want is to establish general causation in a Daubert-less series of hearings using a few ‘case studies’ hand picked from the 4,700 and then use _these_ as the body of general causation evidence to go on and establish specific causation in each single member of the 4,700. Stop and think about how poor the state of their science must be if they are arguing tooth and nail to do this.

Let’s not forget that three high echelon members of the mercury militia have all fallen foul of Daubert within the last year when trying to establish quack causes for autism: Martha Herbert, Boyd Haley and Mark Geier all came to realise that quackery and bad science is quickly exposed by such a hearing. And now – all of a sudden – the petitioners don’t want any truck with Daubert. Shocking.

Make no mistake – if they get their way, _which they may very well do_ – then a) these kids don’t have to be autistic and b) no science needs to be presented to establish general causation.

The closest recent bout of idiocy I can think to compare to this was when certain Southern US states stated that creationism was a viable science to be taught in a science class alongside actual science. They went on to win a a legal case as well if I recall. Don’t think that this one can’t be won by bad science too.

Portia Iverson – Strange Son

4 Mar

This isn’t a book review.

This is the the unfolding story of some book reviews about Portia Iverson’s new book ‘Strange Son’.

Ms Iverson is a founder of CAN (Cure Autism Now) and wrote this book about her own son Dov and another autistic boy – Tito Mukhopadhyay. Here’s how an author I once had a great deal of respect for described this book:

Love introduced two mothers, one who lived in India and the other in the United States. Their passion to seek health for their children, both afflicted by autism, brought the two women across continents and over oceans. Each stimulated the other with her fervor to find medical breakthroughs. Their story is exciting and uplifting.

Amazingly (or not so in this day and age) the first customer review is written by Tito Mukhopadhyay, one of the ‘strange sons’ who was ‘afflicted by autism’. Here’s his review:

I am Tito Rajarshi Mukhopadhyay.

The book ‘Strange Son’ felt like a ‘slap’ on my face from someone who mother and I trusted the most.

Overstimulation and puberty stage can be difficult for many like me. But getting recorded in a way like that, ‘hurts more than my Autism’.

‘May the writer find whatever she seeks’.

By the way, I ‘hand-write’ and communicate/write my books (the Mind Tree, Gold of the Sunbeams, Beyond the Silence). Next year my new book (untitled) will be out, which will describe my sensory conditions in detail, so that other authors may be more equipped before writing about them as ‘observers’ if they watch the ‘show’.

Regards to one and all.

Tito Rajarshi Mukhopadhyay

Here’s a young man who patently feels that he was used, presumably as fodder for Ms Iverson’s publishing career.

Later on, in a separate review, Tito comments:

Honest from the author’s perspective. Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.

Indeed. I would agree with Mr Mukhopadhyay that Ms Iverson’s perception of him is probably flawed and coming from her odd opinions regarding the nature of autism. The following is from a review by a Lisa Helt:

I can’t believe anyone could write such cruel things about any human being, much less a child with a disability. She uses the words, “beast-like”, “alien”, “possessed by a demon”, “like a wild beast”.

The next reviewer in this thread is Portia Iverson herself who says:

I never use the terms: “beast-like”, “alien”, “possessed by a demon” to describe my son in my book. This inaccurracy and others make it clear that this reviewer has not actually read the book.

What Iverson fails to note is that Ms Helt did not claim these comments were specifically about her own son, Dov. No, she reserved these words for the foreigner. And as Ms Helt points out, she certainly _did_ use them:

Actually, you did use these terms. On page 129,”When I left their apartment that day I felt as if I’d glimpsed into the mind of an alien being.”; Page 116, “‘Tired’ was hardly an apt explanation for the extraordinary scene we had been witnessing … where food was flying in every direction, accompanied by his odd grimacing sounds…”; Page 117, “I emailed Tito that same night and asked him why he behaved like that at the table, grabbing food and acting like a wild beast …”; Page 126, “He dashed through the house and raced toward the fridge, the first stop on the terrible circuit he could not break free of. He flung open the refrigerator door and wildly rifled through its contents… ‘You’ll never get a publisher with this kind of behavior!’ I commented in a low voice”; Page 127, “Now it seemed as if Tito were possessed by a demon.”;

As commenter Anne Bevington states later on:

An alien, a wild beast, possessed by a demon … the author was writing about Tito, not Dov. I’m sure Tito has brought in a lot of attention and money for the author’s organization, Cure Autism Now. This is the thanks he gets. The author owes Tito an apology, at the very least.

Another reviewer, Linda Lange comments:

One thing I’ve gathered from this book is that the author believes whole-heartedly that calling others strange (including her own son, and those with autism) is okay with her. However, she draws the line at others who question strange aspects of her story. Interesting phenomena which deserves contemplation, especially as it relates to the contrast of the journeys of those described in the book. Conversely, those who are being called strange in this book don’t seem to have much of a say on the matter. Truly, strangely upsetting.

Indeed. I can’t see myself shelling out money on this book.

There’s a number of lessons to be learnt from this. Number one, this is the age of the internet Ms Iverson, don’t expect to remain free of criticism from the subject matter of your books whom you have clearly offended and abused the trust of. Secondly, lying in retorts to reviews makes you look silly.

But thirdly, and most sadly of all, you will get away with it. Here’s a section of the review from one Barbara Fischkin:

As for those of us who are getting some flack for saying we want to “cure” autism and give autistic kids “souls”: Speaking for myself, not Iverson, I think this is the shorthand of busy mothers who do many other things. Curing a child does not mean you eradicate him or her. It means you take the best, and perhaps some of the worst, that he or she demonstrates as a human being, and help him or her to show that to the world in the form that is the most comfortable for that individual. My own son, now 19, would, I am convinced, prefer to speak instead of grunt his very strong opinions. He would prefer to waste less time worrying about his bodily functions and the inappropriate way in which they have a mind of their own. And yes, he would like his old soul back, the one that was killed….

Here we have the continuing example of a parent who believes that they can not only speak for, but unfailingly know the mind of, their autistic kids. Ms Fischkin cannot even take the trouble to look up and see Tito Mukhopadhyay’s thoughts on those who would presume to speak for him:

Perception is a tricky business. But some honesty hurts and Mutilates the trust forever.

Note that Fischkin believes her son’s soul is currently dead. Killed. This dehumanisation is a direct consequence of the thought processes outlined in Strange Son.

Update

Read more from Autism Diva and MOM-NOS and the Autism Demonized team blog.

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