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Lauren Thierry, Autism Every Day, Why Lie?

14 Jul

Via Kristina and Ballastexistenz I found out a few more facts about the ‘Autism Every Day’ film.

I, amongst others, was highly critical of the film for two reasons. Firstly, its highly provocative title claims that it shows the daily reality of living with an autistic person. Secondly, the jaw dropping bleating of a mother who told how she contemplated murder/suicide because of her life with the hell of autism.

Now, an interview with the filmmaker, one Lauren Thierry, has revealed the calculatedly misleading nature of the film and the lengths Thierry went to ensure the film got the ‘harrowing’ footage needed.

The party line is supposed to be that anything that raises awareness you’re supposed to be happy about. That notion is 10 years old. At this point we need to be showing the world what the vast reality truly is.” She says that reality includes images of kids not sleeping through the night, banging their heads against the wall or running into traffic — not images of kids setting basketball records or passionately playing the violin.

This is not accuracy. This is a calculated agenda. Of _course_ kids not sleeping through the night or banging their heads against walls, or running into traffic are realities. No one disputes that. But Autism Every Day (and Thierry) in the above quote are explicitly excluding images of kids setting basketball records or playing the violin. Those are _also_ realities. I showed another reality at the end of my original post – that of my beautiful daughter grinning from ear to ear as she bounced on her trampoline.

You are not ‘showing the world what the reality truly is’ Mr/Ms Thierry. You are, by your own admission, deliberately excluding anything not capable of inducing pity.

And what about the events that the filmmakers _did_ record? If you’re going to deliberately, consciously exclude the varied reality of autistic life then surely it behooves you to at least present the material you _do_ choose to show accurately?

Thierry told her subjects not to do their hair, vacuum or bring in the therapists. She showed up with her crew at their homes sight unseen and kept the cameras rolling as a mom literally wrestled with her son to get him to brush his teeth, as a 9-year-old had a public meltdown, as a 5-year-old had his diaper changed. And, as moms revealed dark and uncomfortable truths about living with autism. The result is a window into an exhausting world of interminable work.

Yet again, this is _not_ accuracy, this is a premeditated attempt to wilfully misrepresent people. As Ballastexistenz says in her post:

This was, as expected, not really a “slice of everyday life” from these parents’ lives, but a deliberately engineered take on the worst they could make things look.

You have to wonder at the motives. Why would someone who claims to be an autism advocate deliberately create and release a deliberately inaccurate film?

But it gets worse.

The majority of the harsh criticism surrounding the film is directed at Alison Tepper Singer, a mom featured in the film and a staff member of Autism Speaks. About midway through the film, Singer discusses her reaction to inadequate classrooms. “I remember that was a scary moment for me when I realized I had sat in the car for about 15 minutes and actually contemplated putting Jody in the car and driving off the George Washington Bridge. That would be preferable to having to put her in one of these schools.” It was only because of her other child, she said, that she didn’t do it.

Both autistic and typical families have reacted with outrage and disgust to Singer’s statement — calling for her children to be removed from her custody and even drawing a connection between her and Karen McCarron. Thierry responds by calling Singer “gutsy and courageous.” She was expecting a call from Singer asking that the footage not be used. But that call never came. “You don’t say stuff like that — camera rolling — unless you are truly ready to play ball with the entire world,” Thierry says.

If most mothers of autistic children, Thierry responds, look hard enough within themselves they will find that they have played out a similar scenario in their minds. “If this is not your reality, then God bless you,” she says.

What in God’s name is going _on_ here? How can someone be described as gutsy and courageous for contemplating murdering their disabled child and then being stopped by the thought of their non-disabled child? Memo to Thierry: that’s not courage or guts. For you to paint it as such is frighteningly irresponsible. If anyone who parents both a disabled and non-disabled child feels it _is_ gutsy then do the same thing – get both kids in a room, tell someone you were thinking of killing the disabled one but because of your other child you won’t. If you feel gutsy or courageous after telling your disabled child its OK to kill them but its not OK to kill their non disabled child then God bless you. Because you need it.

Traces Of Desperation

11 Jul

A new trend is developing amongst the mercury militia. This new trend might even lead me to have to abandon the term ‘mercury militia’ completely.

What seems to be happening in the last couple of months is the downplaying of the role of thiomersal/mercury in ‘causing’ autism and the fomentation of a more generalist position of ‘somethings’ (including thiomersal) causing autism.

This is easy to sympathise with. In recent days a large-scale study has come out that (yet again) indicates no causative link between thiomersal (or MMR) and autism and the body of ‘science’ accumulated thus far by the miltia’s scientists was utterly demolished in both scientific and legal terms. These are people who’s position is becoming desperate. Essentially, in terms of legal success they have less than six months for a scientific paper to establish the possibility of a causative link between autism and thiomersal. I think its fairly obvious that’s not going to happen. When one examines the CDDS data (data David Kirby refers to as ‘the gold standard’) in the 3 – 5 year old cohort (the cohort Kirby agree’s is the only important one to examine) the rate of autism is not falling. It is still climbing. What we see are quarterly fluctuations (both ways) in the rate of increase (which Kirby agree’s is not the right measure).

Therefore, we have a still climbing autism rate according to CDDS data despite the fact that the amount of thiomersal in vaccines has very dramatically gone down and the amount of vaccines containing thiomersal has drastically reduced.

To look at it another way, in order for the autism rate to continue to be climbing in the way it is and for the thiomersal hypothesis to be correct, the US would need to be maintaining the same amount of thiomersal containing vaccines with the same amount of thiomersal in each.

So for a variety of reasons thiomersal’s role is altering to fit the new agenda.

Thiomersal’s role is subtly altering in the mercury militia’s mindset. It’s now altering from an absolutist ‘autism = mercury poisoning’ role to a more subtle role where thiomersal is one amongst many elements that cause autism. As an interesting aside, one has to wonder what the role of Generation Rescue will be in this brave new world.

Now, lets be kind here and forget that for months, years even, those of us who’ve consistently opposed such an absolutist position have tried to explain just why it couldn’t simply ‘be’ thiomersal. We have to remember that those who believe it _is_ thiomersal and solely thiomersal lack the capacity of rational thought in many cases. John Best Jr is a case in point.

The idea that thiomersal is simply ‘one amongst many’ that may cause autism is more valid from a standpoint of basic (dare I say it?) Common Sense, and yet from a science point of view it brings the group of people we should now refer to as the ex-mercury militia (all alternative aliterations accepted) to a standpoint of working from the ground up about how a whole _multitude_ of elements may cause autism. Good luck with that one.

And yet, the ghost of the thiomersal, much like another unquiet corpse, rests uneasily in its grave. It is now suggested, despite the massive drop in the available amount of thiomersal (from a compulsory 187 ug Hg to an optional 25 ug Hg in the US)and the apparent continued rise in rates of autism that the reason the autism rate may continue to be rising may be the ‘trace’ amounts of thiomersal used in the vaccine manufacturing process. This trace amount is in DTaP-HepB-IPV, DTaP, Hepatitis B and one flu vaccine.

Here’s a commenter on a recent WebMD thread:

First, it must be recognized that thimerosal, although not generally used as a “preservative,” is still used in the manufacturing process, resulting in “trace” amounts remaining in various quantities. Also, thimerosal is still used as a preservative in many, if not most, flu vaccines which are highly recommended for administration to pregnant women and young children. There is no denying that the exposure to thimerosal has been greatly diminished, but it has not disappeared altogether.

So lets examine what the word ‘trace’ might mean. I offer as evidence a bottle of cranberry flavoured water from the Leitch fridge. Look closely at the nutritional list where fat – saturated fat even – is descibed as being in trace amounts (click for bigger picture):

Now, I can’t speak for America but over here we don’t have an epidemic of cranberry flavoured water induced obesity. However, by law, manufacturers are required to state what the _exact_ constituent makeup of their product is. It seems daft and rather nanny-stateish to me but thats besides the point. The trace of saturated fat in bottled water can’t make anyone overweight. The trace of thiomersal levels now in vaccines can’t make anyone autistic.

The commenter on WebMD went on to say:

Finally, it is worth noting that thimerosal’s reduction in most vaccines has coincided with an increase in the use of aluminum. Although I know of no published studies yet bearing on the impact of aluminum one way or the other, I understand that this is a question that we shall see more of in the future. If aluminum has an impact that is similar to mercury, the numbers would remain largely unchanged.

Fascinating bit of strawman logic. And one I take pleasure in saying ‘I told you so’ about.

14 months ago in May 2005 I said

the next big boogeyman (which will apparently be Aluminium)

when referring to a review of Evidence of Harm. This either makes me really smart or the ex-mercury militia very, very predictable.

Autism Hub Updates

9 Jul

I’ve introduced a few changes to the Hub over the last few days.

Firstly, the whole site has had a substantial redesign. This has (I hope) made things a bit easier on the eye, a bit easier to read the content you’re interested in and generally behave better across a wider range of devices.

There’s still some ongoing backend work which needs to be completed before I start accepting potential new members and there’s a few more front end tweaks to get slotted in to make users lives even easier but these won’t require any substantial aesthetic alterations or any downtime at all.

Secondly, I’ve introduced a range of t-shirts that you can buy via the Hub. Its a very small range at the moment but I’ll be designing and adding more over time.

The reasons I’ve done this is mainly due to the unexpected success and popularity of the Hub. It took me very much by surprise how quickly it took off and the long and short of it is that the Hub needs to start paying for itself fairly quickly.

There are several ways I could’ve gone about getting revenue but I despise adverts on sites (or – even worse – in RSS feeds) and I ‘m very much against the idea of paid-for content in this context so this seemed the best solution – the buyer gets something and I get a cut to go towards the cost of running the site.

I’ve no idea how (un)successful this idea might be as I’ve never done anything like this before but if I do make any money beyond the requirements of the site to sustain itself then I’ll be donating the excess to pro-neurodiversity websites and projects at the end of each year.

Lastly, I’ve just set up a new part of the Hub which is free for anyone to use.

It’s called the ‘autisticus’ and it works in exactly the same way as del.icio.us – it allows you to save interesting stories and blog entries to a central location.

All you need to do is head to the autisticus site, create an account and then add pages/stories/blog entries you want to bookmark. You can tag entries in exactly the same way as del.icio.us and there’s even a draggable bookmark shortcut for your browser. Over time, as more entries get added and tagged, there’ll be a big resource of searchable tags and entries to read and research at your leisure. You cn even add any existing del.icio.us entries you may already have.

So, go join up and start adding entries!

Boyd Haley and Mark Geier: Experts?

7 Jul

In case you didn’t know, as well as vaccines, the mercury militia also think that the thiomersal in RhoGAM given to pregnant mothers causes autism. Alongside the ongoing autism/vaccine omnibus hearings, there has been a RhoGAM hearing as well.

An unidentified couple brought a case against Ortho-Clinical Diagnostics Inc’s RhoGAM product as they claimed that their unidentified child’s (referred to as ‘Minor Child Doe 2’) autism was caused by two shots of RhoGAM – one whilst the mother was 28 weeks pregnant and one administered shortly after the child’s birth. They declared three expert witnesses to speak on their behalf, George Lucier, Boyd Haley and Mark Geier.

The defendants (Ortho-Clinical Diagnostics Inc) put forward a motion to exclude these expert witnesses, which after hearing evidence as to why, the court granted. Yesterday, the court discussed its decisions and let it be known exactly why these three expert witnesses were excluded.

The court conducted a ‘Daubert‘ hearing to decide on the quality of these expert witnesses.

Daubert requires a two-part analysis: first, this Court must determine whether an expert’s testimony reflects “scientific knowledge,” whether the findings are “derived by the scientific method,” and whether the work product is “good science.”. Second, this Court must determine whether the expert’s testimony is “relevant to the task at hand.”

Source.

The way that the court reaches judgement in respect of these two points is as follows:

courts may consider whether the theory or technique employed by the expert is generally accepted in the scientific community; whether it has been subjected to peer review and publication; whether it can be and has been tested; whether the known or potential rate of error is acceptable; and the existence and maintenance of standards and controls. These factors are not exclusive nor dispositive. Since Daubert, the U.S. Supreme Court and lower courts have also identified additional factors that may be considered, such as whether an expert has unjustifiably extrapolated from an accepted premise to an unfounded conclusion, whether an expert has adequately accounted for obvious alternative explanations, or whether an expert is proposing to testify about matters “growing naturally and directly out of research they have conducted independent of the litigation, or whether they have developed their opinions expressly for purposes of testifying.”….Trained experts commonly extrapolate from existing data but nothing in either Daubert or the Federal Rules of Evidence requires a district court to admit opinion evidence which is connected to existing data only by the ipse dixit of the expert. A court may conclude that there is simply too great an analytical gap between the data and the opinion proffered.” Finally, a bold statement of the experts’ qualifications, conclusions, and assurances of reliability are not enough to satisfy the Daubert standard.

There were two types of Daubert hearing held. In the first instance, the Daubert principles were applied to the issue of general causation (can the thiomersal in RhoGAM cause autism?) and the issue of specific causation (did the double RhoGAM shots cause Minor Child Doe 2’s autism?). If general causation cannot be established then specific causation does not need to be examined.

Boyd Haley’s Strong Beliefs

Lucier and Haley were not put forward as experts able to address the specific causation issue, but all three (Lucier, Haley and Geier) were put forward to address the general causation issue.

On the issue of general causation the court had the following to say:

The court…finds that *Dr. Haley’s report does not state an expert opinion that thimerosal causes autism, rather just that he has a theory about how such a thing could happen*. At best, he expressed “strong belief” that the cause of “neurodevelopmental disorders in infants” is exposure to an organic-mercury compound such as thimerosal. Additionally, Plaintiffs proffered the report of Dr. Lucier, who is an expert in methylmercury and not ethylmercury, which is the substance in RhoGAM. Dr. Lucier does not offer an opinion that methylmercury causes autism, but rather that it may cause “developmental disorders.” Significantly, the Court notes that neither Dr. Haley nor Dr. Lucier asserts that he is an expert on autism nor are they offered as such. In any event, the Court finds that neither of the proffered reports of Dr. Haley nor Dr. Lucier are sufficiently reliable under Daubert on the general causation issue because neither is relevant to the “task at hand.” It would be an unacceptable scientific leap to suggest that they serve as proof, by a preponderance of the evidence, of Plaintiff’s claim that the thimerosal in RhoGAM can cause autism.

Ouch. Let’s make sure we don’t underestimate the gravity of this. Under the Daubert principle, which is very very thorough in terms of scientific methodology, Boyd Haley’s theories about thiomersal causing autism are not anything other than a theory that discusses how such an event might happen. All he can apparently offer is a ‘strong belief’ that he is right.

This left the court with the thorny problem of Mark Geier.

Mark Geier Takes A Licking

Much of Geier’s testimony was dependant on a review of the scientific literature. Under the Daubert principle, the literature itself must also undergo examination under the Daubert principles.

At the close of Plaintiffs’ presentation at the Daubert hearing, Plaintiffs argued that their evidence would support such a conclusion. In response to Plaintiffs’ position, Defendant challenged Plaintiffs’ proffer by way of a cross examination of Plaintiffs’ expert Dr. Geier and by offering its own experts to *demonstrate that Plaintiffs’ experts used unsound methodology or otherwise failed to follow sound protocol*. Having closely considered the evidence and arguments both by Plaintiffs and Defendant, the Court has made a number of findings with respect to the testimony by Plaintiffs’ primary expert Dr. Geier. These findings form the basis of the Court’s ultimate conclusion that *Plaintiffs have not met their burden under the Daubert analysis*.

Oh dear. So Geier and the evidence he presented did not meet the Daubert principles. Lets discuss this further.

The Court has taken into account…..the fact that Dr. Geier has testified as an expert witness in about one hundred cases before the National Vaccine Injury Compensation Program of the United States Court of Federal Claims. It is noteworthy that in more than ten of these cases, particularly in some of the more recent cases, Dr. Geier’s opinion testimony has either been excluded or accorded little or no weight based upon a determination that he was testifying beyond his expertise.In this case, subject to the Court’s Daubert analysis, Dr. Geier’s testimony is being offered by Plaintiffs for presentation at trial to support Dr. Geier’s ultimate conclusion that the thimerosal in RhoGAM caused Minor Child Doe’s autism.

Let’s remind ourselves that in those cases, Geier’s testimony has been described as, ‘speculation that is directly contrary to the conclusions reached
in well-respected and numerous epidemiologic and medical studies ranging over two decades’, ‘did not reach “the level of evidentiary reliability that Daubert requires because it is not based upon scientific validity, valid methodology, peer review or testing, and more than minimal support within the scientific community’, ‘intellectually dishonest’, ‘nothing more than an egregious example of blatant, result-oriented testimony’ and that he himself was a ‘”professional witness in areas for which he has no training, expertise, and experience’.

What else did the court have to say?

…the Court notes that, in fact, a literature review can be an appropriate part of a method of determining general causation. However, a literature review must still be performed appropriately. As revealed by his testimony at the Daubert hearing, Dr. Geier, however, relied upon a number of disparate and unconnected studies, including the findings of Dr. Haley and Dr. Lucier, to reach a piecemeal conclusion with respect to general causation.

The court went on to admit that, in common with a couple of journalists I can think of, when one hears Geier speak and hears his testimony it sounds persuasive on the face of it. However, it soon became clear that when one looked past the thin veneer of ‘disparate and unconnected’ studies, the threadbare nature of the ‘association’ became very very clear.

However, upon being subjected to extensive cross examination, much of Dr. Geier’s analysis, based upon his collective review of a motley assortment of diverse literature, proved, in the Court’s view, to be overstated. For example, in examining Dr. Geier’s methodology, the Court notes that Dr. Geier could not point to a single study, including anything that he had published, that conclusively determined that the amount of thimerosal in RhoGAM when given not to the fetus but to the mother, as in this case, could cause autism. *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.*

The court closed its look at the literature review with the following:

This Court must find more than the “hypothesis and speculation,” engaged in by Dr. Geier in this instance….

Double ouch. Most of Geier’s testimony revolved around this literature review. Not only was court already looking at him with extreme skepticism, it also – quite rightly – dismissed his presentation of the review _including the review materials themselves_ as resulting in nothing more than ‘hypothesis and speculation’. The court further noted that not even this (his own!) literature review can support Geier’s general causation testimony.

Thus, while Dr. Geier’s presentation of the literature as part of his methodology might at first glance appear convincing, the disconnected literature he presents does not add up to the opinion and conclusion that Dr. Geier is offering. Accordingly, the Court finds that *Dr. Geier’s literature review, in this instance, does not meet the Daubert standard of being both derived by the scientific method* and relevant to the “task at hand.

Again, this is important stuff. This was the first real courtroom test of the scientific literature that the mercury militia have built to support the thiomersal/autism hypothesis. Have a look at the references – the Holmes baby study was presented, as was the Hornig mouse study amongst others. It was collectively adjudged not to meet Daubert standards in that it was not possible to say it was derived using scientific method.

To put it less politely, its a bunch of crap.

The court also discussed the other part of Geier’s testimony relating to general causation – his examination of VAERS. In this it concluded that:

the Court finds that Dr. Geier’s published VAERS studies have been severely criticized by The Institute of Medicine as having “serious methodological flaws,” analytic
methods that were “non-transparent,” and generally “non-contributory with respect to causality. More specifically, one of the particular criticisms leveled at Dr. Geier’s study was that, as a passive reporting system, it would be inappropriate to calculate incidence rates based upon the data in V AERS because it “does not have complete reporting of all adverse events and because many report events lack a confirmed diagnosis or confirmed attribution to vaccine.”

Geier has also written two papers regarding RhoGAM and had the cheek to submit them as part of his literature review. However, as they had not been accepted for publication, nor peer reviewed and as the court expressed doubts over both the methodology utilised in these papers and the odd ‘coincidence’ that these papers were embarked on shortly after the instigation of the case being heard, they threw them out too.

And so, that’s the issues of general causation stone dead. At this point, the court would be fully justified in not proceeding further. However, they did move on to address Geier’s testimony is respect of specific causation.

Mark Geier Takes A Kicking

The court accepted that a differential diagnosis was a sound method of establishing a basis for allowing _expert opinion_ with regard to specific causation and this indeed, was the method Mark Geier used to attempt to illustrate specific causation in Minor Child Doe 2’s case. However, we need to make sure we understand this. The court is _not_ saying that a differential diagnosis is automatically good enough to illustrate specific causation. It is saying that *if* the person offering the differential diagnosis is a recognised expert, that that differential diagnosis stands a better chance of being accepted as ‘good enough’ to establish specific causation.

…even if the Court were to assume that general causation had been shown in this instance, the Court finds that Dr. Geier’s application of the differential diagnosis technique suffers from its own irregularities.

Bad enough, but then the real humiliation follows:

First, the Court notes that Dr. Geier is not a pediatrician or a pediatric neurologist. In fact, *testimony was presented to the Court that Dr. Geier was not even successful in sitting for his Medical Board examination in the specific field of pediatric genetics*.

Triple Ouch. That one had to hurt. They’re essentially questioning if Mark Geier is even qualified to undertake a differential diagnosis _at all_. Let alone qualified to offer an expert opinion on one. _Let alone_ qualified to offer an expert one on a question of specific causation.

The court also took Geier to task for his failure to include the most widely accepted scientific theory regarding autism causation – genetics. It beggars belief that he would attempt to offer a *differential* diagnosis without even mentioning this possibility.

Although Dr. Geier apparently has considered a number of specific genetic disorders in performing his differential diagnosis, the Court finds that his failure to take
into account the existence of such a strong likelihood of a currently unknown genetic cause of autism *serves to negate Dr. Geier’s use of the differential diagnosis technique as being proper in this instance*

and that therefore…

….the Court finds that Dr. Geier was not specifically qualified to perform a differential diagnosis of a pediatric neurological disorder, and, that he did not properly perform the differential diagnosis

Oops. I hope John and Jane Doe feel suitably recompensed for their ‘experts’ testimony.

The court goes on to make a few interesting comments and comparisons regarding the Omnibus vaccine proceedings, noting that those proceedings have until the end of this year to submit papers to establish causation and that the defendants in this case were also defendants in those proceedings. They then wrap up with:

Accordingly, notwithstanding the valiant effort by Plaintiffs in this case, Defendant’s Motion for Summary Judgment must be allowed and this case must be dismissed with prejudice.

And that’s that.

Significant Conclusions

Awhile ago, I posted regarding a series of comments from Lenny Schafer in which he discussed his hopes that the thiomersal court cases would be easier to prove in a court of law than they would in the scientific realm. I think after this ruling its clear to see why they will not.

This is a significant turn of events for numerous reasons. Firstly, it was the first time that autism had been attempted to be directly linked to thiomersal. That gambit failed. Secondly, it was the first time the body of evidence the mercury militia has accumulated thus far was tested in court. It failed to be recognised as scientifically valid. Thirdly, it was the first time that Geier or Haley had stood as expert witnesses in a court case relating directly to the thiomersal/autism hypothesis. They were both found severely wanting in that respect.

Let’s remember that the vaccine Omnibus hearings have until the end of _this_ year – less than six months away now – to augment the evidence found wanting in these hearings.

For the mercury militia, times is just about up.

Full court listing and decision document.

Further discussions here: Autism Diva, Orac, Prometheus and Kathleen provides a HTML version of the decision on neurodiversity.com

Canada Speaks: No, It’s Not Vaccines

6 Jul

Pediatrics have published a new paper, *Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations* authored by Fombonne et al.

Pre-empting an NAA style ad hominem attack, the authors declare their conflicts early.

In the United Kingdom, Dr Fombonne has provided advice on the epidemiology and clinical aspects of autism to scientists advising parents, to vaccine manufacturers, and to several government committees between 1998 and 2001. Since June 2004, Dr Fombonne has been an expert witness for vaccine manufacturers in US thimerosal litigation. None of his research has ever been funded by the industry.

As they don’t agree with the paper this has caused the usual suspects, notably Safe Minds and FAIR Autism Media to highlight these aspects of the paper in an attempt to claim these invalidate the papers findings. Mark Blaxill of Safe Minds says that:

According to an analysis by SafeMinds, however, the study […] should be treated with skepticism, for a number of reasons.

Whilst David Ayoub states that:

“This is just another heavily biased study by an author with a long track record of financial ties to the drug industry, and whose previous views on the epidemiology of autism have been discredited,” wrote Ayoub

So, as far as the mercury militia are concerned, the following points are an issue.

1) Fombonne’s alleged financial ties to the drug industry. One assumes he is referring to Fombonne’s pre-stated offering of advice on the epidemiology and clinical aspects of autism and the fact that he’s an expert witness for vaccine manufacturers.

Let’s cut the shit here shall we? Richard Deth is a petitioners’ expert witness in major vaccine litigation. So are the Geier’s. So are various others. They have an equal ‘special interest’. Should we dismiss their papers out of hand? Either we allow *all* or allow *none*.

2) Fombonne’s previous views on the epidemiology of autism have been discredited.

Really? They have? By who? In what journal was this ‘discrediting’ published? Lets be clear here. Ayoub uses the word ‘discredited’. He didn’t say, ‘challenged’. He didn’t say ‘contraversial’ he said ‘discredited’.

David Ayoub by contrast, thinks that Rashid Buttar – a man who’s own patients think he’s a money grabbing quack – is an industry expert:

The 2 top chelation people in the world are Gary Gordon, MD, and Rashid Buttar, MD, he adds.

It’s my opinion that anyone who thinks Rashid Buttar is ‘top’ of anything autism related needs get his head back to reality pretty quickly.

3) Mark Blaxill at least takes a stab at something substantive. He questions the study methodology on two points. Firstly, he tries to insinuate that what might be true for Canada might not be for the US. Secondly he states that some of the study subjects may have received thiomersal from other vaccine sources than those noted in the study.

Fombonne et al write that:

The findings ruled out an association between pervasive developmental disorder and either high levels of ethylmercury exposure comparable with those experienced in the United States in the 1990s or 1- or 2-dose measles-mumps-rubella vaccinations.

So the word ‘comparable’ is used. Fombonne et al never attempt to state that it is a fact that what’s true for Canada is true for the US. However, its also true that there wouldn’t seem to be any good reason for _not_ thinking that. Why would the US and Canada be different? Surely thiomersal is thiomersal?

After that weak stab at something relevant, Blaxill retreats to Ayoub’s tactics of smear and spin.

Dr. Fombonne wrongfully claims that large-population studies in the United States, England and Denmark also disprove a link between mercury and autism, and he states that “there is no autism epidemic.”

The one mention of the word ‘Denmark’ in the entire paper is this one:

Our results are entirely consistent with cohort, case-control, and other ecological studies performed in Denmark and Sweden.

Fombonne et al never claim that these studies disprove anything. They merely note that consistency between those studies and their own. I can’t locate the use of the word ‘England’, ‘UK’, ‘united kingdom’ or ‘Britian’ anywhere in this paper so I fail to see why Blaxill mentions them.

Blaxill is guilty of intellectual dishonesty many times in his ‘rebuttal’. None more so than when he states that:

He conveniently ignores the vast body of scientific evidence that has shown that environmental factors such as mercury may have caused the increased number of autism diagnoses in the US and other countries.

Fombonne et al do not at any point discuss generalised ‘environmental factors such as mercury’. They discuss the key question regarding thiomersal and MMR. It raises questions about Blaxill’s integrity that he would try and switch the focus onto something he and his group explicitly have targeted to something much more general and which Fombonne et al does not address. This is a pattern becoming more and more apparent from key members of the mercury militia. As science continues to fail to support any causative link between thiomersal, MMR and autism, these groups are becoming much more generalised in their terminology. Expect to see more of this as 2006 draws to a close.

Blaxill also claims there is an increased number of autism diagnoses yet he fails to point to evidence for this. Fombonne’s own research on this point indicates a high but stable prevalence.

Blaxill continues:

Dr. Fombonne’s actions have not historically been in the best interest of families with autism—he has declared himself an expert witness on behalf of various pharmaceutical companies in thimerosal-related litigation.

By contrast, the Geier’s actions have not been in the interests of autistic peoples. And in fact this whole point about ‘best interests’ is childish in the extreme. The _only_ interest that science should adhere to is that of honest science. To suggest otherwise leaves a question mark over the objectives of Blaxill’s actions.

Several independent federal agencies and respected scientists and researchers have received federal funds to investigate the autism epidemic and the biological
plausibility of a link between mercury and ASDs.

Why is this even mentioned? Why not wait for them to be completed? Like this one already is.

Multiple studies have indicated that there is a connection between childhood vaccines containing thimerosal and the incidence of autism.

Blaxill (maybe purposefully) doesn’t mention _who_ might’ve conducted those studies, or where they were published. I’m guessing that he means the Geier’s but that recent revalations regarding their integrity and the quality of their work, made him think twice about saying their names for the record. Can’t say I blame him.

Skeptico, Orac and Autism Diva also comment on this study.

Judge Rotenberg Center – Good on Pain, Bad On Web Work

1 Jul

I recently blogged about the Judge Rotenberg Center and a few employee’s and ex-employee’s came to offer their opinions that it was OK to inflict pain on people until they did what you want.

Like most quacks, they failed to show any evidence that their way was any better then a non-pain inducing methodology so one was left with the conclusion that they used pain as a tool because it appealed to their natures as people.

Anyway, I’ve been taking a long hard look at the JRC website and received a bit of information which led to what I believe is a breach of US law governing personal data and data protection issues.

I’m going to have to talk broadly here as I don’t think it would be ethical for me to show you exactly what steps I took to stumble across this data. However, not only are the full names of all current staff members on public display, there are documents I’ve found which contain a full listing of all current students, represented by initials, together with details about which schools/units they’ve attended prior to JRC. There are also documents which mention at least 4 students full names, together with photographs of these students.

Let’s also be clear that the method I utilised to get to the data under discussion did not in any way reflect any hacking, cracking, injecting or otherwise any unethical practices. It came from a chance mouse click and some really dreadful .NET coding on behalf of the JRC’s web developer(s).

In the US it is the Dept of Health and Human Services which have governance over the regulations that dictate what is legally acceptable and what’s not under HIPAA.

From the HIPAA site:

Generally, what does the HIPAA Privacy Rule require the average provider or health plan to do?

For the average health care provider or health plan, the Privacy Rule requires activities, such as:..[]…Securing patient records containing individually identifiable health information so that they are not readily available to those who do not need them.

It seems pretty clear to me (but remember I’m not a US citizen or overly familiar with the intricacies of US law) that the posting of student personal data on an insecure web server where it can be accessed by a chance mouse click is a clear contravention of the above legal guideline.

I posted what Id found to an American friend I trusted and this person was able to replicate what I’d done and was also presented with the same confidential data. As an American citizen my friend is free to make a complaint following the process outlined here and in fact I understand this process is underway. The official complaint contains full details of how the data was discovered and exactly which data it was that was found.

Upon checking the source code of a few pages (the source code is the code that a web page is written in) I was shocked to find the following statement:

<!--#include virtual = "connectDB.asp"-->

I have altered the path and file name referred to but essentially this file is used to declare a connection to an online database. I now knew the exact path to the .asp file that contained the database server name, username and password which means that it would not have been to difficult, if I was so inclined, to connect to the JRC online database. I was _not_ so inclined and so I have no real idea what’s in the database but I would imagine it would be pretty important stuff. It’s also further illustration of the woeful state of the security on the JRC website.

Student safety is paramount and so if any JRC staff are reading this, please email me and establish exactly who you are (no anonymity allowed) and I will tell you exactly how this confidential data was accessed. I’ll even make a few suggestions as to the nature of the coding error and how you might fix it.

I don’t suppose this breech will result in JRC getting shut down but I think it will ensure the close attention of data protection specialists and probably ensure a hefty fine. Here’s hoping. I’ll keep this blog up to date with how the complaint goes.

If Someone’s Not Broke, Don’t Fix Them

27 Jun

National Public Radio in America aired a report about autism and the growing self advocacy movement today. I strongly suggest you download the audio and listen to the voices of autistic people.

Someone I know was interviewed – Amanda Baggs. Amanda has been an advocate longer than any of us I think. She’s smarter than me, she’s calmer than me, she’s more organised than me, she phrases things better than me. Along with Kathleen, I think Amanda is one of the best writers in autism related subjects. Different styles, different subjects, different neurology – same coherency.

Because I know Amanda I was looking forward to hearing her as much as I looked forward to hearing Autism Diva recently. That’s not to denigrate the other participants but its always good to hear the people you have formed a relationship with and who’s words have caused (and continue to cause) such a massive alteration in one’s thoughts and beliefs.

Amanda is one of those autistics that certain people don’t believe exist or can communicate – she is an autistic person who is typically referred to as ‘low functioning’ just like my own daughter. This is because she doesn’t speak. When you hear Amanda, you will hear her fingers on her keyboard. Here is a list of other autistic people who are non-verbal and considered ‘low functionning’.

When you read things written by Amanda (and other people) the idea that she is ‘broken’ or ‘defective’ or ‘a train wreck’ is laughable.

Here’s what Erik Nanstiel who believes himself part of the autism community had to say about Amanda:

Can I ask something of all of you here? Did you like to see her like that? […] I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy. A crime. […] I will never apologize for not wanting my daughter to be like that woman. Autism of that profundity IS a tragedy…not an alternative lifestyle. It’s a DISORDER that can be avoided. […] when I see that woman (I’m sorry I don’t remember her name) lying there with the lonely blank stares typical of autism…and read of her horrible experiences…all I can think of is how could this have been avoided? I imagine everything she has missed out on earlier in her life…and will likely never experience later in life. She may be “fine” with her life and merely want acceptance and love…and everything else that folks seek in life. But there’s a richness to life she’ll never have because of her disabilities.

He was referring to ‘the woman’ on the site Getting The Truth Out. At the time, for good reason, Amanda wished to remain anonymous and so Erik didn’t know who she was. He didn’t know that he had regularly interacted with this woman he viewed as ‘a great tragedy’ with the ‘lonely blank stares typical of autism’. He stated that there was a richness to life ‘she’ll never have because of her disabilities’.

Amanda herself (who one should assume might know a little better than Erik) says:

…my underlying point remains the same: It’s wrong to tell people to go off and reinforce their most destructive prejudices by meeting or viewing photographs of people like me, people like my friends, or people like my old classmates. I know that people meet us and don’t really meet us, they just meet their warped perspectives of pitiful awful lives that drain everyone around them and should probably have been prevented to begin with. I know that people view pictures of us and view only what is in their own minds about what our appearances mean, and how they don’t want their children to be like those people. It is wrong to tell people to do this to us, and to themselves. It would be better to tell people to look at who we really are, our real value in the world, and reinforce that, instead of reinforcing people’s worst views of us. It would be better to say that preventing a whole kind of person is eugenics of the worst kind, rather than saying “Just look at them, you’ll see why it’s better that there aren’t more of them.”

Don’t believe for a minute that most of us don’t understand on one level or another what it means to plan for a world without people like us in it. Don’t believe for a minute that “Just look at them” is an argument against our existence, or that there are any legitimate arguments against our existence. And watch what you say about us, we could be listening. 😉

Erik says in his quote that:

I am, however, going to do everything in my power to see that my daughter doesn’t end up like that. I would consider that a great tragedy

I would be proud beyond belief if my daughter grew up to have such a command of language, emotion, tone and justice as Amanda. Even if she didn’t I would still be proud. Megan’s favourite MP3 at the moment is the Podcast Autism Diva did – I would proud beyond belief if Megan grew up to have the same sort of principles and sense of justice as Autism Diva.

Amanda’s not broken. Autism Diva isn’t broken. Megan Leitch isn’t broken. They don’t require fixing.

Indefensible And Unprotested

26 Jun

The McCarron family and the Leitch family have become close over the last few weeks. We have never met. We have never heard each others voices. We have only seen pictures of each other and communicated by email but in that communication has been a sharing of warmth, emotion and desire to connect such as some people never seem to get in their lives. We have swapped addresses as well as photos and they know should they ever want to come to the UK they have a home here. We know that the reverse is true also.

And yet I wish it wasn’t so. A part of me heartily wishes I’d never spoken with Mike. I’m sure he feels the same. This is because of the circumstances that led to us meeting. The murder of his granddaughter, Katie McCarron. If I could ensure a return to life in the arms of her dad, sister and grandparents by swapping that for the friendship of one of the kindest, bravest families I’ve ever met then I would do it in an heartbeat.

Mike refuses to see Katie portrayed as a burden, or as someone in pain. This is because she wasn’t. He also refuses to let people directly or indirectly attempt to absolve Katie’s killer by making murder the responsibility of an uncaring society. This is because it wasn’t. It was murder.

Recently, Stephen Drake of Not Dead Yet, wrote a press release calling for restraint when reporting these kind of murders – i.e. murders of disabled kids.

Researcher Dick Sobsey has documented an increase in the murders of children by their parents in Canada in relation to well-publicized and sympathetic coverage of the murders of children with disabilities. Articles about the alleged murder of a person with a disability should not contain more about the disability than about the victim as a person. More space should be devoted to grieving family members than sympathetic friends of the accused killer.

And yet, yesterday, the Chicago Tribune released a piece of journalism that can be best described as callow.

The piece starts off by portraying members of the mercury/autism connection as the inheritors of the sort of stigma that those who actually were persecuted by Bettlehiem underwent:

It has been nearly 50 years since mothers shouldered the blame for their children’s autism. Yet for many parents, echoes of that painful era remain……

In the 1950s and ’60s, the medical community accepted University of Chicago psychoanalyst Bruno Bettelheim’s assessment that “refrigerator mothers”–those with a supposedly cold, unloving demeanor–brought on their children’s disorder.

Although we now know that autism is a neurological disorder and not the result of bad parenting, the exact cause remains a mystery.

Many parents, however, are convinced they’ve found the answer. And most experts are on the opposing side.

Indeed, few medical battles are more charged than that between parents who believe mercury in their children’s vaccines brought on autism and the medical establishment that has found no evidence to support that claim.

Where the ground really starts to shift is the next association made – that it was this society induced guilt that led poor heroic Karen McCarron into killing her vaccine-injured ‘heavy toll’ inducing daughter.

Some who knew McCarron through her work with an autism support group say the physician blamed herself for allowing her daughter to be vaccinated, and feared that the available remedies wouldn’t make enough of an improvement to her daughter’s quality of life. Others suggest that perhaps working among other doctors skeptical of the vaccine connection created an emotional tug of war for McCarron

I think I know Mike well enough now to be absolutely sure that he and his family would be _outraged_ at these utterly vacuous statements. To besmirch the memory of Katie McCarron by trying to empathise with her murdering mother and to try and absolve her and by implication blame the mainstream medical community is appalling.

In fact, the reverse is almost certainly true – the utter hopelessness that groups such as Autism Speaks like to foment are much more likely to have led to any depression Katie’s murderer might’ve had. And if she felt that vaccines caused her daughters autism then she long ago crossed the line into quackery. In this case, fatal quackery. There is still absolutely zero evidence that vaccines cause autism. Anyone – and I mean _anyone_ who has had a hand in perpetuating that myth bears some responsibility for the murder of Katie McCarron.

On the 22nd of June, Kellie A. Waremburg attempted to kill her four year old daughter. Thankfully she failed. Her daughter has cerebral palsy.

Shortly afterwards, the same barrage of testimonials commenting on how good a mother Waremburg was came out and how difficult it is to parent a child with cerebral palsy:

“She’s always been a good mom. She’s always interacting with her (daughter),” said next-door neighbor Katie Gardiner.

Families face challenges, there’s no question about it. Children have varying degrees of impairment. For some families, there is a minimal impact to families who need to take every aspect of their child’s care – feed them, dress them, toilet them,” said Morgan, who also is the chief of the section of child development within the Department of Pediatrics at University of Illinois College of Medicine at Peoria.

So? So what? Get over it, get on with it. If you can’t, then hand your child over to family members or social services and let someone who doesn’t put themselves first get on with it.

I want to clue these killer parents and those parents and groups who ‘understand’ killer parents into something: Your child is not your property. You have no rights over them. You have an obligation to parent them, love them, feed them, clothe them, teach them and let them be who they are. When you have a child, you put yourself last. If your career suffers – that’s not their fault. If you can’t go out as much as you used to – that’s not their fault. If money is a problem – that’s not their fault. Stop transferring your unhappiness about the way your life has changed into excuses for killing, or understanding the killers of, children.

I’ve had two themes running through this blog of late. One is this one – the murder of disabled children. The other one is what’s going on at the Judge Rotenberg Centre where electric skin shock is used to punish autistic and non-autistic students. People who believe in the concept of neurodiversity have been outraged and blogged both of these events continuously and thoroughly.

There is however, one section of people who has remained utterly and totally silent on both issues. The self styled ‘autism community’ who perpetuate the ongoing myth of vaccines causing autism.

Autism Speaks released a short movie about the horrors of having to live life with an autistic child. I’ve seen no movies about the JRC, or investigations into electric shocks for autistic people.

The NAA who regularly (and falsely) denounce good science and promote bad released a damp squib of an online petition and then fell totally silent on the issue.

Safe Minds? Nothing.

ACHAMP? Nothing.

These, don’t forget, are the people who call themselves the autism community. Seems to me like they care about one issue and one issue only.

And how about the anti-mercury bloggers? The grass-roots ‘autism community’.

Adventures in Autism? Nothing.

UPDATE: Ginger informs me that she’s temporarily not blogging at all and hadn’t even heard of Katie McCarron. In this light, it doesn’t seem fair to place AiA here.

Injecting Sense? Nothing.

Whilst these people continue their obsession with trying to find some kind of spurious link between vaccines and autism the world continues to turn. Whilst they present themselves to politicians and media outlets as the autism community, the world continues to turn. Whilst they attend single issue conferences, the world continues to turn.

Unless you’re Katie McCarron. Then the world doesn’t turn at all.

Unless you’re Lexus Fuller. Her world is shattered as she must grow up knowing her mum tried to kill her.

Unless you’re a student at the JRC where the world and time must appear to stand still as you are electrocuted for non-compliance.

Kevin Leitch: Big Pharma Shill

25 Jun

I’m involved in a protracted discussion with a bunch of anti-vaccinationistas on what claims to be an autism support forum. Amongst them is the hilarious srniath who is treating is child with Lupron but who didn’t know what CPP or PPP was and didn’t know that excess testosterone could be caused by vitamin and supplements.

Another one is someone one calls themselves ‘respect’ and who is an out-and-out anti-vaxxer:

I think we are missing the forest for the trees. Will we all go out and vaccinate our kids with 20 vaccinations before the age of 18 months just because there is no mercury in them? The issue here must the vaccination, and not just the mercury.

Source.

Other regulars there include Erik ‘PR for the Geier’s’ Nanstiel and various other posters – I’ve heard various conspiracy theories totuted around including the eye-popping theory that the World Trade Center terrorist attacks were perpetrated by shadowy US government figures.

Basically, there’s a few good people there but they are drowned out by the louder wingnuts.

Anyway, I’m involved in a discussion regarding the nature of neurodiversity (srinath is again involved so you’re assured of the odd good belly laugh) and it seems that I’ve been outed as a pharma shill! Again!

‘repect’ googled for “kevin leitch pharmaceutical” and damn – got a result!

Department for International Development (DFID)

Kevin Leitch
Programme Officer
Department for International Development (DFID)
HPD, Level 8 West, 1 Palace Street
London SW1 5HE
United Kingdom
Phone: 44.020.7023.1121
Fax: 44.020.7023.0428/0174
Email: k-leitch@dfid.gov.uk

Oh man – who would’ve thought that using my real name would’ve led me to being outed? I would’ve gotten away with it too, if it weren’t for you darn kids!

I admit this really tickled my funny bone – how desperate do you have to be to discredit a broke web developer from the West Midlands?

Anyway, just in case there’s any confusion in the future I’d like to make clear that I am not Kevin Leitch. Nor am I Kevin Leitch, or Kevin Leitch, or Kevin Leitch, or Kevin Leitch, or Kevin Leitch and sadly not Kevin Leitch.

MMR And The Daily Mail – Archetypal Strawmen

23 Jun

In their continuing quest to establish MMR as evil in a syringe, the Daily Mail are turning increasingly to more and more blatant strawman fallacies.

In a recent article entitled *’We won’t allow MMR cover-up say parents of tragic toddlers’* , the Daily Mail reach new lows of journalism.

The parents of two healthy toddlers who died ten days after being given the controversial MMR jabs have warned the Government that they will not allow the cause of their deaths to be ‘covered up’.

Firstly, lets note that nowhere in any article I’ve read has the UK government attempted to ‘cover up’ the deaths of these two toddlers. The Daily Mail are inventing a conspiracy where none appears to exist. This will of course allow them to turn round when MMR is established _not_ to be the cause of death and scream ‘cover up!’ and ‘conspiracy!’ and ‘we told you so!’.

Lets further note that the MMR jab is only controversial to Daily Mail and Private Eye readers. I read a *lot* of non autism related, non vaccine related message boards/forums/newsgroups and whenever the issue comes up virtually nobody really believes the MMR causes autism, or is in any way ‘controversial’.

Doctors say they cannot explain why George Fisher and Anna Duncan, both aged 17 months, died in their sleep. But the children’s parents believe that the controversial triple jab – against measles, mumps and rubella – is to blame.

If this is a cover up then those Doc’s are really bad it it. Note that they’re being entirely honest and claiming that they cannot explain why these two kids died. Hell, they’re not even claiming the MMR _didn’t_ cause their deaths. I also note however, that no actual Doctors – and certainly not the Doctors who said they ‘couldn’t explain’ the deaths – are interviewed or quoted anywhere in this piece.

George’s mother, Sarah, said last week that despite repeated Government assurances the vaccine is safe,she and her husband were ‘100 per cent sure George was killed by MMR’.

Based on what?

The only indications of ill-health before the children died were that both showed signs of apparently minor reactions to their MMR jabs.

Minor reactions. My daughter had a reaction to her DTP – vomiting, fever – we panicked and took her to A&E where her fever settled almost immediately. At the time we were ‘100% sure’ that the DTP jab caused/triggered her autism but we’re not any more. Her reaction was, relatively speaking, fairly innocuous and it sounds liek these two kids reactions were too. Minor reactions don’t lead to death.

And Anna’s father, John, said he and his wife would ‘never forgive themselves’ for not paying privately for single jabs and for believing Government assurances that MMR was safe. _They now believe that the doctors should have spotted and warned of the dangers_. Mr Duncan said that, having conducted extensive research since Anna’s death, he and his wife, who is a nurse, considered it possible that their daughter had died ‘as a result of a catastrophic reaction to the vaccine’. He said: ‘Six days after her jab, Anna developed purple spots on her body and bouts of high temperature. ‘_We read only later that these were side-effects of MMR to watch out for. ‘If we had been properly warned we would have taken her for medical help sooner. But the risks of vaccines are just never mentioned. ‘Anna had been exposed to an outbreak of chickenpox in our village just before her jab, which we mentioned, and had a runny nose, which means she really shouldn’t have been injected with MMR at that point._ ‘Parents should be better informed about the risks and the choice of single jabs should be available to all parents through the NHS.’

So now we get to the meat of the matter. Despite the Mail doing their best to muddy the time line it now seems that this child was ill prior to receiving her MMR, which they didn’t know was something to look out for despite this information being freely available on the NHS Direct website, they then let her have the MMR which she had a minor reaction to nearly a week after the injection (which is also noted and discussed at NHSDirect) and she then tragically died. Her parents then decided that this previously categorised ‘minor reaction’ was in actual fact a ‘catastrophic reaction’ and that it was the Governments fault for engendering a conspiracy of silence over the MMR.

The idea of a government conspiracy to keep the potential dangers of the MMR vaccine quiet is fallacious in the extreme given that the information exists on the leading healthcare website in the UK. Its not even hard to find – simply go to the home page and type ‘MMR’ into the search engine.

Its also fallacious, given the time line established to claim that the MMR is at fault here. Medical wisdom is clear that vaccines should not be given to kids who have been ill. If her parents didn’t tell the person administering the vaccine this fact then they bear part of the responsibility. If they _did_ tell the administering nurse she’d been ill then the Practice concerned should be held accountable and punished.

The MMR is not at fault here. The issue is that an illness that could trigger a bad reaction was not identified prior to administering the MMR.

This is not the first time (and I’m sure it won’t be the last) that the Daily Mail attempt to seriously mislead people over the MMR vaccine. They have lost all sense of responsibility over the issue, mainly because they have invested so much time and ink into the matter. With breathtaking arrogance and irresponsibility, the end of this article, states that:

The failure of the Government’s campaign was demonstrated last week when figures showed that because so many parents are spurning MMR, Britain is now in the grip of the biggest measles outbreak since the vaccine’s introduction in 1988.

Has the government campaign failed? Probably. They did a poor job at getting the truth out but lets not pretend that rags like the Mail didn’t play a significant part in causing this measles outbreak. They share the responsibility. Its time for them to grow up and stop jumping at shadows.

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