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No, the autism “rate” in California did not go down after removing thimerosal from vaccines

26 Feb

I recently attended a talk where the speaker showed autism prevalence by age group for a large HMO in California. The administrative prevalence (fraction of people in the HMO identified autistic) was still going up as of 2010, and the speaker indicated this trend continued to 2012. California is an interesting case study because not only was thimerosal removed from vaccines along with the rest of the U.S. starting in the late 1990’s, but the state enacted a law which required that pregnant women and children under three be given thimerosal free vaccines from 2006 onward. So, with the exception of an an exemption in 2009 and another one right now, even the influenza vaccine in thimerosal free. I bring this up because it is a common argument that somehow the exposure from the flu vaccine is keeping the rate climbing, even though at most this is a lower exposure than that from the 1990’s pediatric vaccine schedule.

This all said, the talk made me dive back into looking at autism prevalence. I decided to finally write about the fact that the autism prevalence in Denmark is higher post thimerosal than while thimerosal containing vaccines were in use. This is completely unsurprising, but a myth has been propogating that it came down and that fact was being hidden.

As it turns out I also checked back with what once was the most common source of autism data for the armchair epidemiologist: the California Department of Developmental Services (CDDS). (I admit one could argue that Special Education data are the most common source for the armchair epidemiologist). The CDDS provides services to disabled Californians and keeps and makes public statistics on their client base. For a long time, every quarter they would come out with a report. For a long time, every quarter these reports would be followed by announcements about how the data showed that vaccines cause autism. One of the people you could always count on was David Kirby (author of the book, Evidence of Harm: Mercury in Vaccines and the Autism Epidemic: A Medical Controversy, and basically a PR man for some of the vaccine-causation groups). Mr. Kirby went so far as to claim that these data were the “gold standard of autism epidemiology”. Well, the data had their uses (such as identifying and quantifying some of the social influences behind the increase) but it is not an easy task to get results from them. The idea that they represent an accurate count of all those with ASD’s (or even accurately account for all individuals with autistic disorder) is a stretch.

But this didn’t stop David Kirby. Back in 2005, David Kirby was claiming that there was an indication that the administrative prevalence in California was starting to drop, and if the trend continued this was a sign that the removal of thimerosal was having an effect:

Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if — the implication of thimerosal in the autism epidemic will be practically undeniable.

Well, by 2007 it was clear that the California data were not really showing a drop. In addition, the lack of a drop was published in 2008 as Continuing increases in autism reported to California’s developmental services system: mercury in retrograde.\

The rise in the number of autism clients in the CDDS database was key to the idea of the mercury-induced epidemic. David Kirby (and others) relied on these data and Mr. Kirby even acknowledged that the data should start showing a drop (statement from 2005):

If the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis.

The reason is that 5 year olds in 2007 were born after the removal of thimerosal from vaccines. Their exposure to thimerosal was much less than kids in the 1990’s. If the “thimerosal caused an autism epidemic” idea were true, the rates would have to drop. They should drop back to pre-1990 (actually pre 1980) levels if thimerosal were the main, or even a main, cause of the rise.

My recollection is that Mr. Kirby did later backpedal and claim that we would have to wait until some much later date, but it was a weak argument (even by David Kirby standards).

Sorry to keep diving into past history, but one of the strangest moments in the mecury debate (and I can use the term this time, because there was a debate) came in San Diego in 2007. David Kirby debated Arthur Allen in the UCSD Price Center (about 100 yards from my old office, as it turns out). Presented with the fact that even though thimerosal exposure from vaccines had gone down, the California numbers kept going up, David Kirby presented (in something like 100 power point slides!) a four pronged response. First was a claim that California HMO’s had stockpiled thimerosal containing vaccines, so the exposure from vaccines didn’t really go down as much as reports were claiming. Then:

1) A gigantic plume of coal smoke from Chinese power plants has settled on California, depositing lots of mercury and therefore causing the autism numbers in the state to continue to grow.

2) Bad forest fires have put tons of mercury into the air, depositing lots of mercury etc…

3) Cremations (!). The burning of dead bodies with mercury amalgam in their mouths has added even more mercury to the air.

It was a hail Mary pass, to be blunt. Lot’s of handwaving and ignoring the facts.

In 2007, the CDDS changed the way they assessed and counted their clients and they stopped publishing the quarterly reports. As you can imagine, many claimed this was part of a conspiracy to hide the fact that the autism rates were declining in California. And with that the quarterly ritual of misinterpreting and deconstrucing the data came to an end.

All amusing history, sure, but one might ask, why bring all this up again? Well, because it turns out that the CDDS started putting out quarterly reports again in 2011. Yes, there’s a gap of a few years in the data. Yes, some things changed (for example, the CDDS now shows the PDD fraction of autism client base). Given these limitations–and the other limitations in the CDDS data (i.e. they are *not* the “gold standard” of autism epidemiology), what do these data show? The upward trends continue. More individuals served by the CDDS with autism, even though thimerosal was removed from vaccines. Here’s the total–all ages–count for CDDS clients in the autism category (click to enlarge):

CDDS total

Looking at the younger age groups, those whose exposure to thimerosal is much lower than for kids born in the 1990s, there is also an increase. Here is the age 3-5 age group (click to enlarge)

CDDS 3-5

and the 6-9 age group (click to enlarge):

CDDS 6-9

9 year olds in 2012 were born in 2003. Post the removal of thimerosal nationwide. 5 year olds were born in 2007, post thimerosal nationwide and post the California law prohibiting mercury in vaccines for pregnant women and small children. In both groups, the CDDS autism counts are higher than they were in 2002 (the earliest date in the currently available data). Which, in turn, was much higher than the counts from the 1990’s. Here is a figure from the Schechter-Grether paper refenced above:

S-G CDDS paper figure

Which is all a very long way of saying: years ago the evidence was against the thimerosal/epidemic idea; it is even more clear now. For years we heard Mr. Kirby and others talk about how those responsible should step up and admit what happened. Well, the fact is they did. Now it is time for those who promoted the mercury notion to step forward and show they have the guts to admit they were wrong. Because they were. Clearly wrong. It would take a lot of guts to step forward and admit the mistakes. Even though their influence has waned, it would help the autism communities. While I have focused on David Kirby in this discussion, the list is much longer of people who should step forward. I’m not going to hold my breath.


By Matt Carey

Sharyl Attkisson interviews David Kirby…and oh is it bad

8 Oct

Have a look for yourself:

http://cnettv.cnet.com/av/video/cbsnews/atlantis2/player-dest.swf
Watch CBS News Videos Online

David Kirby, interviewed by Sharyl Attkisson. Talk about faux-news. For those luckily unfamiliar with Ms. Attkisson, here are some of the pieces done on this blog about her. Ms. Attkisson has a history of interviewing other members of the press and not being critical at all of their unsupported claims. She did this with Bernadine Healy, who made some unfounded claims about the IOM. When a study came out disproving a study by Maddy Hornig on mice and thimerosal that is, Ms. Attkisson blogged the Thoughtful House (Andrew Wakefield) press release on the subject. There’s more, but that gives you a taste of her history.

Today she interviewed David Kirby, author of “Evidence of Harm” and Huffington Post blogger.

To start, David Kirby apparantly has rewritten his book (yes, that is sarcasm). It is titled, “Evidence of Harm, Mercury in Vaccines and the Autism Epidemic: A Medical Controversy”.

But according to the interview, his book isn’t primarily about mercury in vaccines. Instead it is all about “increasing environmental exposures, toxins in children throughout the 1990’s and into the early 2000’s from both mercury background mercury environmental mercury which is on the increase and also mercury and other heavy metals and toxic metals that are included in vaccines that we give our children.”

Notice how thimersosal (mercury in vaccines) is downplayed compared to environmental mercury. That’s called revisionist history. Take a look at the back cover from the book (click to enlarge):

Back Cover from David Kirby's Evidence of Harm

Back Cover from David Kirby's Evidence of Harm

A commenter on this blog called the recent National Children’s Health Survey to be the worst sort of prevalence study. It can get much worse. For example–according to David Kirby, when he went through the subway he didn’t see anyone obviously autistic. Yes, David Kirby, epidemiologist and diagnostician has found a dramatically low prevalence amongst the New York subway riders.

David Kirby reminds us all that Asperger’s syndrome is a disability. Mr. Kirby, go back and tell that to Lenny Schafer, the “commenter of the week” on your blog, the Age of Autism.

If someone made a comment on this blog like Mr. Shafer did he would be booed off the stage. Here’s an excerpt:

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

Your blog gave him a free T-shirt. Don’t lecture us about disability.

Dr. Thomas Insel, director of the National Institutes of Mental Health and chair of the Interagency Autism Coordinating Committee declined to be interviewed by Ms. Attkisson.

A sincere “good job” goes out to Dr. Insel. After the way Ms. Attkisson showed a clear bias in doing her story on Dr. Offit, I can completely understand Dr. Insel declining the interview.

The second half of the interview discusses Mr. Kirby’s new book, the use of antibiotics on large farms.

No, seriously, they moved from Autism to animal farms.

Way to plug David Kirby’s new book, Sharyl!

Asperger Syndrome is not a disability, just ask Lenny Schafer

6 Aug

Lenny Schafer wrote one of the most insulting comments I have seen on the Age of Autism blog in a long time. This is actually old news–the comment was made on Luly 13th. I missed the comment, but how did I miss that it was, no kidding, picked as an award winning “comment of the week” by the “editors” of the Age of Autism blog.

If you didn’t see it, here is Mr. Shafers, award winning comment from the Age of Autism blog:

“Disability” is not a literary term open to subjective interpretation. It is a forensic, legal term defined in documents like the DSM-IV for the parsing of government entitlements and insurance compensations. Asperger Syndrome is not defined as a disability. Those with Aspergers do not get Social Security Disability benefits. They are not entitled to most state entitlement disability programs and are not qualified to park in disabled parking zones. Those with Aspergers ARE disadvantaged and deserve support and our advocacy for them, but not at the same levels for the disabled. Let us stop interchanging the term “disability” with “disadvantage”.

Also, the term “high functioning autism” is a street jargon misnomer and has no clinical definition, despite it widening use. It is a term that also trivializes autism. It is oxymoronic. Autism is defined by disability, lack of function. Is there such a thing as high-sighted blindness? Or high-hearing deafness? Perhaps “HighER Function Autism” might make more sense because it is not self-contradictory. (We then wouldn’t need the redundant “Low Functioning Autism” label either.)

The whole autism spectrum labeling is a mistake, in any event, for a number of reasons I won’t go into here. However, we are stuck with it. Let’s get clear on related word meanings. Lack of good communication skills is a definite disadvantage, but not necessarily a disability.

And let us hope that the upcoming DSM-V gets clearer about defining autism only as a disability — and kicks the high functioning ND autism squatters onto the personality disorder spectrum where they belong.

There is so much that can be said, point by point, in response to Mr. Schafer’s comment. But my guess is that most readers of this blog need no commentary to realize what a grossly insulting statement Mr. Schafer made.

What boggles the mind even further is that this was a comment to Mr. Jake Crosby’s piece, “Autism, Asperger’s: Who is Truly Disabled?“, a piece all about how Asperger syndrome truly is a disability. Mr. Crosby’s concluding statement in that piece was:

Unfortunately, that is what’s happening, but as a person with Asperger’s I can tell you that I am truly disabled, albeit much more mildly than others with autism.

While we have disagreed on some points, Mr. Crosby and I have been having a good discussion in the comments of this blog. I believe we both agree that Asperger Syndrome is a genuine disability. I couldn’t see him agreeing with Mr. Shafer’s comments, so I went digging to see what comments Mr. Crosby made.

Here are two comments by Mr. Crosby in response as posted to AoA:

I’m a contributing editor to this site, but played no role in Lenny Schafer winning the “comment of the week.” His comment isn’t just grossly offensive to parents of those on the higher end of the spectrum, but also to those of us ON the higher end of the spectrum.

and

Schafer’s post is wrong on so many levels. It is the comment of the week alright, the worst comment of the week.

I almost didn’t post Mr. Crosby’s comments. I didn’t want to go for the easy, “look there’s dissension in the ranks at AoA” message. As I said above, Mr. Crosby and I don’t see eye-to-eye on all subjects. But I can still recognize and respect the courage it took to speak out like that. Mostly, it is worth noting that Mr. Crosby doesn’t share Mr. Shafer’s opinion.

The Age of Autism has officially closed comments to Mr. Crosby’s piece and to the “commenter of the week” post.

I’d love to see the comments they deleted.

On media, neurodiversity and science

29 May

Opinions vary as to why I, and many of my online friends believe what we do. The answers cannot be easily encapsulated but an indication is given by the source of the two links I’ve just linked to.

The first group believe autism is not just a disability, that it is both more and less than that and that whatever the aetiology of ‘it’ is, it is likely to not have a single cause and further, if it does or if it doesn’t, the fact that people are autistic is a state of being (a property of their personhood) that is deserving of respect and tolerance. After all, if we can tolerate difference between sexes enough to think of a toilet seat that raises or lowers as a natural aspect of functional life then we really should be able to make the minor adjustments necessary to accommodate the needs and requirements of autistic people.

The second group believe in the scientific method. They believe that in matters of science, that the rules of science should be applied.

There is some major overlap between the position of these two groups. There are a number of bloggers on the Autism Hub and an even larger number of readers of blogs on the Autism Hub who are bloggers on Science Blogs and/or readers of Science Blogs’. A number of bloggers who have autistic children are scientists of various disciplines.

It is worth noting however that these two groups are not synonymous. I know of a few people who believe in the basic essence of neurodiversity who also think vaccines damaged them or their children. This is because they know that even if vaccines did do damage, they or their kids are still deserving of respect. Conversely, I expect there are a few science bloggers who would not agree with the standpoint of neurodiversity and would ferociously chase a cure.

But these people are the exception. By and large these are two groups who share a mutual opinion that the only way to progress our knowledge of the science of autism is to use the scientific method. Science is now, thankfully, beginning to catch on to the idea that the best way to get knowledge that may help autistic people is to listen to autistic people.

At MIT Amanda Baggs has been working with the science team there in ways that will result in positive and scientifically valid ways of helping autistic (and other) people.

Estée also gave a presentation at MIT (the second talk was fuller than this one) and she also noted Michelle Dawson’s ongoing role at the University of Montreal.

This is all good progress. It’s exciting to watch these things develop and to see the possibilities that might spring forth from these alliances and how they might benefit my daughter and autistic people generally.

I believe in the scientific method. I believe science has done more than anything else to take us closer to understanding the universe within us and around us. I believe that the naturally occurring alliance that is being forged between autistic people, their allies and science is absolutely the correct way to go. Neither side is seeking to change or alter the other but to understand each other and benefit from the union.

If I want to see an example of how _not_ to do things, I need look no further than (you guessed it) the mercury militia/malicia. These are people who have taken the polar opposite view. They eye science with distrust. They refuse to accept that the results of studies that disagree with their stance can be correct to the extent that they threaten those scientists with violence, or they ignore science and instead disagree with the wording of press releases about science. In fact, this is Lenny Schafer’s view (from a past SAR):

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public.

Make no mistake, by ‘different’ Schafer (correctly) means looser, way, way looser. He does not want scientific standards to come to play in determining the vaccine/autism connection. The reason why is absurdly obvious.

The scientist and author Michael Crichton once gave a speech about environmental issues that may as well have applied to the autism/vaccine issue:

…Proponents are pressing their views with more PR than scientific data. Indeed, we have allowed the whole issue to be politicized—red vs blue, Republican vs Democrat. This is in my view absurd. Data aren’t political. Data are data. Politics leads you in the direction of a belief. Data, if you follow them, lead you to truth.

On the EoH group where Lenny Schafer is kingpin, there is currently something of a growing schism between Lenny, John Best (e.g. the more hardcore loony element) who believe that Aspergers Syndrome is not a disability and is not part of the spectrum and hence is not autism and a lot of other people who quite obviously have AS kids and are disagreeing very strongly with Lenny’s extremeism. As part of that debate, Lenny made the following statement:

I would like to think of what we do here is public debate, not “fighting”.

This illustrates perfectly the kind of denialism that exists amongst Lenny and his members. The Yahoo EoH group is a closed access list. You can only access the group if you join up and are accepted as a member, which is what I did back in 2005. Yet Lenny really believes that this closed access list is public debate. He _has_ to believe this as he is a firm believer (as we have seen) of political and legal definitions of autism and autism aetiology. In his world view, you need to _manage_ the PR. You need to nudge it in the right direction, much as Lenny’s colleagues from the NAA did when they lied about Paul Shattuck as they disagreed with his results.

By contrast, the Autism Hub bloggers operate openly. Their opinions are challengeable directly on their blogs. Good science is challengeable. It can be challenged by using the scientific method. There is no ‘management’ of information going on here. No one flip-flops between crucial elements of their beliefs and hopes no one notices (such as Brad Handley has done).

The interviews I have done (and am doing now) have been to periodicals that concern science or touch on the science of autism from a parents perspective. I noted with no small amusement this morning that ‘the other side’ are resorting to interviewing each other – Erik Nansteils Autism Media site carries an interview of David Kirby interviewing Katie Wright. I bet that’s an in-depth and truth revealing interview.

I believe that promoting connections between autistic people and science is the absolute best way to get good science regarding autism. I hope to do my bit in making the web work _for_ the promotion of these connections. I hope that our growing community never gets sucked into the tarpit of closed access lists that crow about the achievement of ‘converting’ celebrities and media persons. This is why I set up the Autism Hub and the Autism Parents Forum. So that we can grow as a community and come closer together. I hope to do more of this in the future. I want my email contact list to be full of the names of autistic people, scientists, responsible authors such as Arthur Allen and Brian Deer and parents that, like me, want to benefit from this growing relationship. I couldn’t care less if I never get Lou Diamond Phillips or Don Imus’ email address.

Media and politics or science? When it comes to understanding the science of autism, which will yield better results? Bear this in mind as you consider your choice – science is amoral. You cannot hide, distort or disfigure scientific achievement forever. If something is scientifically accurate, its truth is self evident. No matter how many politicians you have in your pocket, no matter how many media contacts you have, gravity will always be a force of attraction. The power of repulsion belongs to those who would deny that.

Lenny Schafer’s Delicious Cheap Shot

24 May

It’s no secret that I don’t think much of either the reasoning powers, nor general behaviour, of the collection of individuals that populate David Kirby’s ‘Evidence of Harm’ Yahoo Group. Every time I think they can’t surprise and disgust me more, they manage it.

This is the group of people from which sprung an anonymous email referring to Megan as a ‘little bitch’. This is the group of email who have attacked autistic people viciously and repeatedly. It beggars belief that a group of people who are parents to autistic people could be so disrespectful to autistic people when they claim to be ‘the autism community’. But then, how could anyone expect anything better from parents who refer to their own children as ‘dull witted’.

A member of the EoH group has compared my daughter to a monkey when i described how well she was progressing. This same member later said on his own blog:
….My wife bought too many bananas so I’ll send some for your daughter …..

and followed that up with

…Perhaps you can teach your daughter to swing from tree to tree…

This is ample evidence of the sort of people who infest this particular corner of Yahoo.

However, if more proof were needed, today Lenny Schafer, creator of the EoH Yahoo Group established once and for all the level of disregard for children that the EoH group has.

Schafer posted this story to the EoH list today. It concerns a scumbag who has over 100,000 images of child porn in their posession. As part of this scumbags defence, he is claiming he is autistic. Take a place in line behind Cho, scumbag.

Schafer, however, altered the headline so it read:

Prison Ordered for NeuroDiverse Man With More Than 100,000 Child Porn Pictures

and offered this commentary, accompined with a link to this site:

OK, so I added “ND” to the headline to make it more politically correct for all those mercury apologist ghosts lurking on our list. The ND sword cuts both ways. Sometimes you just can’t pass up a delicious cheap shot. Lenny

A delicious cheap shot.

I’m so very happy that Lenny Schafer finds the idea of utilising the torture, rape and suffering of children as an opportunity for a delicious cheap shot as in any way an acceptable thing to do. Schafer doesn’t like neurodiversity. Thats his right. He should campaign against it as hard as he likes. However to utilise the suffering of children in his demonisation is beyond sick.

Lenny Schafer might want to look to the top right hand corner of this website. In it he will find a picture of four year old Madeline McCann, a baby girl who was abducted from her holiday home three weeks ago. That picture has been on my site for almost a fortnight now. Its on the website of many UK residents.

No doubt Lenny Schafer and the antivaccinationist ignorati who surrounds himself with will pat themselves mightily on the back for getting under my skin so much. Because they have. I don’t think you should ever make light of the abduction, rape and torture of children.

I put up that picture of Maddy in the hopes that maybe – a slim hope – someone who knows something might see it and do something which would mean she was returned to the arms of her parents.

I have also colluded with people Lenny Schafer considers friends in the relatively recent past after it was made known to me that an author of an autism book who was friends with a DAN! doctor was a paedophile. I did this to ensure no children would fall into these people’s clutches.

You made your cheap shot Mr Schafer. I hope you found it ‘delicious’.

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???

Reversal of Rett Symptoms

9 Feb

Reversal of Neurological Defects in a Mouse Model of Rett Syndrome.

Rett Syndrome is an ASD. My friend Kassiane has Rett Syndrome. I would bookmark her blog as I’m sure she will want to talk about this.

Yesterday, the news was published that claimed that symptoms of Rett Syndrome had been reversed in a mouse model of Rett. It seems like decent enough science and yet all the news reports I’ve seen are encouraging very worrying responses in some people.

First, lets go through the science at a level people like me can understand it.

Rett is ’caused’ due to mutations in the MECP2 gene. In simple terms what this paper described was the science team attempting to emulate Rett in mice and then turn on the MECP2 gene to see what happened. One of the things that happened was that in roughly half of the mice they did indeed reverse the symptoms of Rett.

This paper has made it into the Schafer Autism Report already. It is also being discussed on the Autism Yahoo Groups with a view to possibly extending these findings:

Is any one going to contact them in regard to our children’s symptoms?

Posted yesterday to the Autism-Mercury group.

What is worrying to me is two things. First is the applicability of this work to humans. One of my science guys whom I rely on to translate this kind of stuff said:

Simply put, this paper is good work, but it’s a headline job because it has no applicability to humans; this paper simply validated Zoghbi’s work.

That’s worrying enough but in a world inhabited by the likes of Rashid Buttar, the Geier’s and various others who leap from madness to madness in their frightening treatment regimes is the second and much more truly scary aspect of this paper that no one seems to be discussing.

I said above that in half of the mice Rett symptoms were indeed reversed. What about the other half?

….prior to symptom onset, revealed toxicity associated with abrupt Mecp2 reactivation as 9 out of 17 mice developed neurological symptoms and died….The data indicate that sudden widespread activation of the Mecp2 gene leads to either rapid death or complete phenotypic rescue.

This is quite literally, kill or cure.

I have a really horrible feeling that certain ‘doctors’ are going to be chasing this like a dog with a bone – already the Yahoo Groups are asking for details. No one is discussing this ‘detail’. A little bit of restraint is very much what’s required here.

UPDATE

Its begun already. Sallie Bernard posted a comment from Richard Deth on the Autism-Mercury group:

The just-published study shows “Rett syndrome” can be reversed in mice, lacking MeCP2, which binds to methylated DNA. Reversal was accomplished by turning on MeCP2 after symptoms (neurological and obesity) were fully developed. The important point is that an abnormal pattern of gene expression, due to interuption of the methylation-dependent epigenetic mechanism, can be reversed if the methylation-dependent epigenetic mechanism is brought back to normal.

The parallels for autism are clear. If impairments of methylation-dependent epigenetic regulation, caused by oxidative stress
rather than MECP2 deletion, can be reversed, then recovery can occur.

No mention of the rather important details that the reversal killed half the mice, instead just a comparison of this decent science with his own brand of poor science in order to lend it weight and credibility it doesn’t have,

David kirby plays the segregation game

3 Jan

A truly fascinating start to 2007. David Kirby writes a blog entry entitled ‘There is no autism epidemic’. Why is it fascinating? Two reasons. Firstly, it reveals the lengths David Kirby is willing to go to shift goalposts even further. The entire entry is replete with strawmen arguments. An example – in his opening paragraph, Kirby talks about being vilified by people who who believe that autism is a stable genetic condition and then names the neurodiversity community as amongst his most spirited detractors.

Nobody I know who shares the opinion of neurodiversity believes autism is *only* a stable genetic condition. However, unless we want to throw out what we know about Rett Syndrome then we do have to accept that some of the spectrum of autism is indeed a genetically based condition.

He further describes neurodiversity as a ‘group of adults with autism’. Again, nowhere near accurate. As I wrote about only yesterday, neurodiversity is not specifically associated with autism, neither is it anything other than a fairly nebulous opinion shared by people who think respect and equality matters. Neither is it an opinion not shared by people who are parents of autistic children.

Here’s how Kirby sums up ‘the neurodiverse’:

Most of them, I believe, have what science calls “Asperger’s Syndrome,” or very high functioning autism. From their eloquent and well reasoned point of view, autism has no “cause,” and it certainly requires no “cure.” To suggest otherwise is to brand these adults with the stigma of disease and disability, which is patently absurd given their educational and intellectual achievements.

No.

Time and time again, the people I speak to who are autistic and who are sharers of the opinion neurodiversity expounds tell me that as children they either were not diagnosed at all and left to rot or diagnosed with low functioning autism. How do I know this? I asked, Mr Kirby, and then I listened to the answer. I didn’t make up any old opinion that suits my argument better. Some, like Amanda Baggs, still _are_ considered low functioning. My Great Uncle was ‘low functioning’ and my Great Aunt was ‘high functioning’ – both were born way before thiomersal was ever around by the way. My Grandma said that her brother-in-law was ‘much worse’ as a child than as an adult. As adults they were able to converse.

The first part of Kirby’s post sets up the second. He is attempting to dismantle the idea of the autistic spectrum and at the same time, corral all ‘the neurodiverse’ into a place where they cannot speak about autism. Here’s the filibuster part of his post in full:

But if that’s autism, then the kids that I have met suffer from some other condition entirely. When I talk about “curing” autism, I am not talking about curing the “neurodiverse.”

I am talking about kids who begin talking and then, suddenly, never say another word.

I’m talking about kids who may never learn to read, write, tie their shoes or fall in love.

I’m talking about kids who sometimes wail in torture at three in the morning because something inside them hurts like a burning coal, but they can’t say what or where it is.

I’m talking about kids who can barely keep food in their inflamed, distressed guts, and when they do, it winds up in rivers of diarrhea or swirls of feces spread on a favorite carpet or pet (no one said this kind of “autism” was pretty).

I’m talking about kids who escape from their home in a blaze of alarms, only to be found hours later, freezing, alone and wandering the Interstate.

I’m talking about kids who have bitten their mother so hard and so often, they are on a first name basis at the emergency room.

I’m talking about kids who spin like fireworks until they fall and crack their heads, kids who will play with a pencil but not with their sister, kids who stare at nothing and scream at everything and don’t even realize it when their dad comes home from work.

These are the kids I want to see cured. And I don’t believe they have “autism.”

Woah! My daughter very rarely speaks, she’s just on the cusp of learning to write, she can’t tie her shoes, she wakes up regularly in the night (on New Years Eve she got up at half past midnight – not 3am) but she is distinctly burning coal free, she tolerates certain foods very well and refuses to touch other foods, she used to smear faeces regularly on both the carpet, the walls, her bed, us, the cat and she’s had the odd bout of diarrhoea (no one said autism was pretty, right?) – she’s pulled out of my hand on occasion and ran and I’ve followed, heart in mouth, she sometimes has the odd pinch or smack at me if I’ve told her she can’t have something, or I’m not getting what it is she wants, she loves to spin – and bounce (have you see my video Mr Kirby?) and she used to be non-social completely.

So yeah, I know what you’re talking about. Guess what? Its still autism. I still love her just the way she is. I still don’t want to change anything about who she is. I’m happy for her to be autistic.

Here’s what *I* think.

I think you’re goalpost shifting again Mr Kirby. You don’t believe they have autism? So what was the last two years about? Why the constant harping on about the CDDS until it stopped showing you what you wanted it to? Why the sudden panicky need to dismantle the idea of a spectrum of autism? Why redefine? Is redefining easier than explaining why your hypothesis isn’t panning out?

And what’s this about?

Asthma, diabetes, allergies and arthritis are ravaging their bodies in growing numbers

Sounds suitably scary but a) has nothing to do with autism and b) would appear to be partly wrong. And what about this:

There is something, or more likely some things in our modern air, water, food and drugs that are making genetically susceptible children sick, and we need to find out what they are.

Wow, is this an admission of error? From stating a belief that thiomersal caused autism you are now suggesting that ‘some things’ are making ‘children sick’ – that’s quite a change of heart. Why? Is it so hard for you to say – ‘guys, I was wrong. Back to the drawing board and I’m sorry you wasted your hard earned dosh on my book’.

Here’s something for you to read on the subject of neurodiversity Mr Kirby, I hope the point doesn’t escape you.

On May 19, a small group of people with Down Syndrome and their supporters disrupted the International Down Syndrome Screening Conference at Regents College in London. This is the first time that people with disabilities have spoken out publicly about prenatal screening. Their protest opens up the debate about genetics, eugenics, and the rights of disabled people.

As a result of the protest, the conference organizers allowed Anya Souza to speak from the podium, a platform her group had previously been denied. Ms. Souza, a trustee of the Down Syndrome Association who is labeled as “suffering” from the condition herself, told the doctors why she opposes the screenings.

The protesters found it unacceptable that doctors would discuss better ways of preventing the birth of people with Down Syndrome while excluding the voices of people with that label from the debate. That runs, they said, directly counter to one of the main demands of the disability rights movement: Nothing about us without us.

“We are what we are,” Gilbert [another protester] concluded. “Ask our opinion.”

Do you get the point(s) Mr Kirby? What you are doing by pretending that AS and autism are two different things is taking away the opinion of autistic people. You are doing it without evidence that you are right, without anything other than a ‘hunch’. An MO that is becoming more than a little familiar. You are following the proud tradition of Lenny Schafer and Rick Rollens, who also want to stop autistic adults talking about autistic children being OK just as they are.

Be brighter than them Mr Kirby. Try and understand that no one advocates letting kids suffer painful medical issues but that these things do not, and never did, equate to autism. What you’ve taken away over the last two years from both these adults and the kids of those you call friends and those you don’t is dignity. Nothing about us without us.

Update: Kristina weighs in too and Joel writes a first class piece on proving one is broken. Diva gives us good instructions and spotting autistic people and Do’C and Jospeh ferries across a river of shit.

Its The Mercury, Stupid! No Wait!

9 Aug

I predicted not long ago that we’d shortly begin to witness a move away from thiomersal/mercury language from the geniuses in the mercury militia due the ongoing science refuting the hypothesis and the total rejection of the accumulated body of science so far built to support the hypothesis.

Every quarter, as long term members of this debacle will know, California DDS release a set of figures that are used to indicate how many autistic people are receiving services in that State. These numbers have been hailed at various times and by various people from the mercury militia as ‘the gold standard’ or ‘incontravertible proof’ that thiomersal causes autism as the numbers seemed to rise in the latter part of the nineties when thiomersal was around and then drop when it was removed. In actual fact, this belief came about due to a total misunderstanding of the numbers. The numbers have never dropped. All that happened at some points was that the _rate of increase_ either dipped or rose. Especially in the core cohort of 3 – 5 year olds.

For more on this see Joseph’s excellent summation.

In short, CDDS numbers continue to rise in the age group that would show a dramatic drop if thiomersal was the culprit.

The last two quarters have seen ‘rises’ in the rate of increase and where once there was excited bandying about of this ‘proof’ we now have the embarrased silence of no dogs barking.

And yet….deep in the recesses of Anti-Vaccine Central aka The Evidence of Harm Yahoo Group….someone had the bad taste to mention this recently. The response was swift, predictable and as stupid as a celebrity reality TV contestant.

Yes, and I do believe that we need to look at ALL environmental factors, and not just mercury, including other vaccine components, the antigens themselves, the cross-reactivity of various vaccines, the timing of vaccine administration, environmental sources of mercury, the overuse of antibiotics, pesticides, pitocin, ultrasound (I have noticed some listmates stating that their NT kids had just as much ultrasound exposure as their ASD child and they’re fine — careful, that’s what the parents of NT kids say about vaccines!) and electromagnetic radiation.

You factor in all of the new vaccine recommendations over the last four years and there are plenty of things that could muddy the waters here. Not to mention live attenuated virus vaccines,

But…but…didn’t these people get the message from Rick Rollens that:

Decline [in CDDS data] coincides with the phasing out of mercury from childhood vaccines.

Yes I know there wasn’t really a decline but they believed it. They touted it as fact.

How about David Kirby’s ‘Gold Standard‘>

Stay tuned. If the numbers in California and elsewhere continue to drop – and that still is a big if — the implication of thimerosal in the autism epidemic will be practically undeniable.

So, now that we know that _they never dropped_ is the opposite ‘practically undeniable’?

Let’s not forget what David Kirby told Citizen Cain:

if the total number of 3-5 year olds in the California DDS system has not declined by 2007, that would deal a severe blow to the autism-thimerosal hypothesis

What shape will that ‘severe blow’ take do you think? Will it be a full and frank admission from Mr Kirby that he maybe should’ve asked around outside of the circle of geniuses headed by Rollens regarding prevalence in CDDS data? That maybe he’s jumped the gun quite substantially? Will we see retractions from Brad Handley and Generation Rescue who might have to redefine their incredibly simplistic, premature and wilfully misleading categorisation of autism? Will we get some injection related sense out of more than a few people? Will Moms Against Mercury rename themselves? How about SafeMinds?

What does Lenny Schafer think? In recent years, the SAR has become little more than an anti-thiomersal polemic. What does he say about all this as the Moderator of the EoH group?

The fact is that if the problem is mercury and mercury has been greatly reduced in vaccines, we should see numbers either dropping, or the rate of increase dropping. Maybe the later is true, I can’t tell from this one chart alone. These reports have always come with caveats about how they are not properly controlled for a variety of factors that could affect the actuals, like the CDC recommendations for mercury flu shots or their aggressive push for early (and more) diagnosis. We (not just Christine) can’t one day point to these numbers and say: “see, they support the mercury hypothesis” when it suit us, and then later say “you really can’t trust these numbers” when they don’t.

At least a nod towards honesty. But he needs to understand why Kirby is correct to say that it is numbers dropping that’s important not changes in the rate of increase.

Slowly but surely these people are moving towards a position of wholesale anti-vaccination. Of course, its been there all along, but as the veneer of credibility the thiomersal hypothesis had when we lacked data is stripped away so is the thin veneer that reveals the depths of their ignorance.

When they finally abandon thiomersal, never forget their adamancy that it was thiomersal. Never forget that their ‘common sense’ trumped their ability to see what was under their noses. Thiomersal is a neuropoison QED, thiomersal causes autism. That’s the sort of logic that resulted in their recent spectacular own goal of the US Senate refusing point blank to put vaccine specific language in the recent Combating Autism Act. Wake up geniuses: They don’t trust you because you’re zealots. Your future is plain to see for them and me. Thiomersal to aluminium, aluminium to live virus, live virus to some other vaccine related ingredient. That’s why the ASA, CAN, Autism Speaks etc were happy to ditch the vaccine language. They want to distance themselves from you. Is it any wonder?

Welcome to EoH visitors! I see you have an amusing long thread where you all talk about how unbothered you are about me – with *lots* of contributions from various familiar faces. I would like to correct one small point you seem to have picked up: There is only one side of this that believe that the Illuminati is involved or even actually exist: That is your side. As represented by John Scudamore (owner of whale.to) and Dr David Ayoub of FAIR Autism Media. Hope thats clear enough for you to grasp :o)

Autism Becomes A Political/Legal Football

17 Apr

In the most recent edition of the Schafer Mercury Report, editor Lenny Schafer has a fascinating response to a letter writer. Its not really necessary to reproduce the letter, but Schafer’s response is a gem:

Myself and other autism activists believe there is enough evidence to support a causative relationship between mercury and autism in a court of law, in front of a jury, where standards of evidence are different than that of the narrow focus of scientific findings. And if you can convince a jury, you can convince the public. Since public health by definition is political, legal standards are even more so appropriate. The profound conflicts of interest amongst those who order, perform and draw conclusions from most of the no-connection evidence as alibis for vaccines, renders such evidence as tampered and thus, less than useless. The defenders of mercurated vaccines are in trouble and attempt to hide their malfeasance behind lab standards.

I mean _wow!_

This is a de facto admission that the scientific evidence to support an autism/mercury connection is very weak:

…. where standards of evidence are different than that of the narrow focus of scientific findings.

By ‘different’ Schafer really means ‘lesser’. I mean call me naive here but I was under the impression that the debate with the mercury militia on one side and the AAP, CDC, UK Gvmt, NHS, and ourselves – autistic advocates – were having was a _scientific_ debate. How silly was I? According to Schafer:

Since public health by definition is political, legal standards are even more so appropriate

Public health is by definition political? Really? Only if you can only see one thing at a time maybe. Widen the lens a little bit and I think every medical research scientist, patient and doctor/nurse might see public health as something a little bit more than a simply political process.

This is a debate at its core about what it means to be autistic. What causes people to be autistic. How in God’s name can that be political beyond the kind of infantile number crunching the Generation ‘6000% increase’ Rescue go in for? The people who have politicised this debate are the ones who employ media manipulation specialists such as Fenton Communications.

But hey – lets not worry about that – lets not worry about the *fact* that learning more about autism is a core scientific responsibility. Turning it into a manipulated football to kick about at the whim of a lawyer is much more realistic.

Schafer is absolutely right that scientific standards are greater than legal ones. Stronger, more stringent, demanding of _actual_ evidence. Maybe Schafer could remind me: was it science or a jury that discovered electricity? Was it science or a jury that discovered penicillin? Science or a jury that took men to the moon? Science or a jury that discovered our place in the stars? Our place in nature? Our place in the future?

But then again:

…if you can convince a jury, you can convince the public…

Because y’know, science is _hard_ . Stick instead to trial lawyers so we can let the sort of people who got OJ Simpson cleared, or the Birmingham Six banged up to sort out the tricky concept of autism. Great idea.

_”The profound conflicts of interest amongst those who order, perform and draw conclusions from most of the no-connection evidence as alibis for vaccines, renders such evidence as tampered and thus, less than useless.”_

Yeah, its all a big conspiracy. Like the one that saw SafeMinds purchase the domain evidenceofharm.com or the one that saw Wendy Fournier of the NAA build Kirby a website, like the one that had Richard Deth listed as an expert witness without his knowledge, or the one that tried to smear Paul Shattuck, or the one that had the Chair of the NAA working for thiomersal lawyers Waters and Kraus, or the one that saw Andrew Wakefield allegedly filing a patent for a rival vaccine to MMR *before* he published his paper, or the one that had Kirby add on two years to his statement regarding when the thiomersal connection would be in trouble, or the one that saw RFK Jr talking about the results of a study from the Geiers several months before it was published, or the one where the Geiers started patenting Lupron therapy, or the one where Generation Rescue placed words in the mouths of scientists.

Its true that your scientific case is very weak Mr Schafer. Without that science, so is your legal one.