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Book Sales: The Age of Autism and Callous Disregard

15 Dec

I tapped my source one last time for book sales figures for “The Age of Autism” and “Callous Disregard”. The Age of Autism was written by Mark Blaxill (board member of SafeMinds and one of the three principle editors of the blog, Age of Autism) and Dan Olmsted (former UPI editor, principle editor and, from what I can tell, owner of the Age of Autism blog). Callous Disregard is Andrew Wakefield’s account of the events which landed him before the General Medical Council and resulted in him being removed from the UK medical register.

Total book sales to date:

Age of Autism: 2301
Callous Disregard: 2925

Last week five copies of Callous Disregard were sold.

Last week The Age of Autism sold 130 copies–38 in Minneapolis St. Paul and 35 in Norfolk, Virginia. This appears to coincide with book signing events in those locations. The week before that, The Age of Autism sold 57 copies.

These figures must be disappointing. If not to the authors, to the publishers.

I may post an update with this week’s book sales. Either way, there isn’t much reason to continue the discussion of these books. When they are available in the remainder book outlets (with this few sales, there won’t be a lot of used copies and little chance for paperback editions) I will likely obtain copies of each. I’ve already read them, but they are interesting from a historical perspective. It will be a good exercise to see how these books read ten years from now. If history is kind to these authors, it will be by neglecting them.

Thank you, SafeMinds, for pulling the attack on Skepchick

10 Dec

First some background. Recently, a blogger (at Skepchick.org) started a campaign to inform movie theaters about the advertisements that SafeMinds was placing on their screens. The theaters decided to pull the advertisements. In response, SafeMinds, through their media outlet Age Of Autism and the AoA facebook page, launched a petty attack on Skepchick. The attack went beyond typical cyber bullying, with at least one comment that went beyond the pale. After many hours and much pressure, SafeMinds and Age of Autism edited many of the comments. They have now pulled the discussion entirely from their facebook page. An apology would certainly be in order, and I would appreciate it that if anyone knows of such an apology that they let us know here.

Even in absence of an apology, I would like to thank SafeMinds and Age of Autism for pulling the discussion. It only served to embarrass the autism communities.

Unfortunately, there is more fallout from the harsh response that SafeMinds and Age of Autism brought in response to the theaters’ decision to pull the advertisements. Liz Ditz at I Speak of Dreams reports that the theaters are now refusing actual public service announcements involving flu vaccines.

SafeMinds retaliates against skeptic blogger

7 Dec

SafeMinds is an organization with the stated purpose to “…to restore health and protect future generations by eradicating the devastation of autism and associated health disorders induced by mercury and other man made toxicants. ” SafeMinds has stayed with this purpose even as the years have gone by and the evidence has mounted that the SafeMinds hypothesis was incorrect (autism is not a form of mercury poisoning). Recently, SafeMinds produced an advertisement, framed as a public service announcement, focusing on mercury in the flu vaccine and tried to get these shown in movie theaters. As we discussed here recently, Elyse over at Skepchick started an effort to inform the movie theaters about SafeMinds. Her effort snowballed into a large petition and resulted in the movie theaters deciding to not show the SafeMinds advertisement.

Recently, SafeMinds has chosen to leave the discussion of ideas and take on Elyse in a personal attack, through their media effort at the Age of Autism. SafeMinds is not only a key sponsor of Age of Autism, but Mark Blaxill (SafeMinds board member) is one of the three principle editors of the Age of Autism blog.

Again, rather than discuss the issues, they pulled Elyse’s facebook photo


and posted this message

This is the woman who fought to pull the SafeMinds PSA’s from the theatres. It’s her FB profile page photo. She is anti-choice and wants to tell you that mercury is safe and that Thimeosal is good – according to her blog. She trolls AofA regularly. As do all the pro-vaccine-injury bloggers.

It was a call to mock and insult Elyse. A perfect example of cyber bullying. Amongst the comments to that FaceBook page was one extreme enough that one of the Age of Autism editors noted it and promised to remove it. “While I agree that the broken thermometer comment was out of order (the blog does not condone violent speech, so that comments is going.”

It took a while for them to make good on the promise. As in many hours later, after Elyse reported the abuse to the police. That comment does appear to be gone now. Many other abusive comments (but not all) also appear to be removed.

Rather than apologize for inciting the bullying effort, SafeMinds/AgeofAutism are defending themselves by claiming that Elyse was standing in the way of choice.

Stopping Americans unable to understand? What is she St. Skepchick? She interefered with medical choice and commerce. That’s her right to make the attempt. We dis not use her name. We pulled her public photo that she used here on FB. We ran it on FB, not the main site – our readers deserved to know who was behind (at the outer level anyway) the AMC campaign to stop the ads. We provide news. This was news.

No. It wasn’t news. And, no, Elyse was not interfering with medical choice or commerce. She was quite simply providing the theaters with information–allowing them to make informed consent about the SafeMinds advertisement.

The idea of SafeMinds being pro-choice on vaccines is rather ironic. Again a story from their outlet blog, the Age of Autism makes this clear. Two years ago, a theater in New Mexico was going to show the movie “Horton Hears a Who” combined with a free vaccination clinic. At that time, they had a connection to Horton star, Jim Carrey. Instead of allowing choice, providing information, they got Jim Carrey to force the cancellation of the event:

Following a long discussion with his representatives at Fox Entertainment – Who-ville – once again through Horton – was heard. The New Mexico test market of drive thru vaccines while at the movies with your children was stopped. Halted by Horton himself because he heard “we are here, we are here, we are here!” once again.

The bullying attack on Elyse wasn’t about choice, it was just a childish attempt at some sort of petty vengeance. Unfortunately it got out of control. I thank SafeMinds and the Age of Autism for editing the comments, but even what is left is unacceptable. It’s time for apologies, not excuses.

Don’t Take the Risk: Get the Facts on SafeMinds

1 Dec

No matter what your position is on SafeMinds, I bet you found that title somewhat overly sensational. You may have thought that there was a not-so-hidden message in it. I’d love to know what your initial reaction was. Think it over before going on.

Here is one of the banner icons from the SafeMinds website. “Don’t Take The Risk” (big letters) above “Get the Facts on the Flu Vaccine” (smaller letters, below). What message does this send?

So, once again I’ll ask you to think about your initial reaction to the title of this blog post. If you found it sensational, if you found it leading, what do you think about the SafeMinds banner?

That banner is from the site you go to if you follow their advice to get more information at “safemindsflu.org”. You may recall that SafeMinds was collecting donations to fund the placement of their advertisement about flu vaccines, an ad that asked you to go to safemindsflu.org. As it turns out that fundraising effort was at least partially for naught. You can read about it in Orac’s Something to be thankful for: No anti-vaccine propaganda with my Harry Potter, or at skepchick’s Let’s all go to the movies and save ourselves some lives.

As you might guess from Autism News Beat’s, AMC says no to shouting fire in a crowded theater, AMC movie theaters decided that they would pass on the opportunity to show the SafeMinds advertisements.

Why? Well, according to a comment left on the AMC community discussion forum by an AMC employee:

Ryan Noonan, Official Rep, replied 12 hours ago
Thank you for your feedback.

I understand there’s a lot of passion on both sides of this issue, however, as an entertainment company, AMC feels our movie screens are not the proper forum for this debate.

Quite right: public service announcements aren’t for the promotion of a debate. As if to prove AMC’s decision correct, the forum then devolved into the usual debate on mercury in vaccines, with much of the usual misinformation and, as Mr. Noonan notes, name-calling:

Thank you all for taking the time to post. As I have addressed, AMC Theatres have not and will not be airing any spot about this topic. While we appreciate the feedback received, we consider this matter closed.

Per Get Satisfaction’s community guidelines, discussion about topics unrelated to AMC Theatres, as well as name calling are against Get Satisfaction’s community guidelines. Despite numerous requests to refrain from debating issues not related to AMC Theatres, there continues to be discussion and debate about vaccination. Because this is not the proper forum for this debate, I am deleting this thread, as well as any subsequent discussion about this topic in this community.

The advertisement was to put both SafeMinds and their position in the public eye. Those who wanted to could then read more on the SafeMindsFlu.org website. Here is an example of what you will find there. Under the heading “If You Are Pregnant or Have Small Children . . .”

Look at the evidence and decide if you consider the influenza virus a true threat to your family. Also consider the evidence regarding, the effectiveness of the flu vaccine in actually preventing influenza.

If you do decide to vaccinate, insist on mercury–free influenza vaccines for yourself and your children.

Do not combine the flu vaccine with other vaccines.

Do not let yourself be pressured into receiving a vaccine that you don’t want; insist that your doctor or pharmacist find you a mercury-free vaccine

Let’s look at those points.

1) “Look at the evidence and decide if you consider the influenza virus a true threat to your family.” Well, unless you are immune to influenza, then, yes, it is a threat to your family. The question is how much of a threat, not whether it is a threat. The second part is valid, consider the effectiveness of the vaccine. I would add, consider that any medical procedure, including vaccines, carries some risk.

2) “If you do decide to vaccinate, insist on mercury–free influenza vaccines for yourself and your children.” Sounds like they’ve made up your mind for you on the mercury discussion.

3) “Do not combine the flu vaccine with other vaccines.” Why would that be? Especially, why would that be from the position of mercury exposure? If, as SafeMinds claims, this discussion is about reducing the exposure to mercury, why avoid, say, a mercury free flu shot in combination with a mercury free measles/mumps/rubella shot?

4) “Do not let yourself be pressured into receiving a vaccine that you don’t want; insist that your doctor or pharmacist find you a mercury-free vaccine “. But do let yourself get pressured by SafeMinds, as they have already made up your mind that you must have mercury-free vaccines.

SafeMinds goes on:

All vaccines pose some risk, with or without mercury content. However, the influenza vaccine is of great concern, as many brands contain high levels of mercury. SafeMinds recommends that consumers read package inserts for any vaccine prior to immunization.

No idea given as to what constitutes a “high level” of mercury. Given that SafeMinds bills themselves as an autism organization, one would assume that flu vaccines have a low level of mercury. Why? Because the level of mercury in a flu vaccine doesn’t cause autism. (It is worth noting that no level of mercury exposure has been shown to cause autism).

There are valid questions that should be raised about any medical procedure, vaccines included. One reason why SafeMinds gathers so much criticism is that they do not act as a vaccine safety organization. Instead, they are an organization which uses vaccine safety information and questions.

SafeMinds cites studies in Pediatrics, some authored by employees of the CDC or vaccine manufacturors to support some of their claims that the influenza vaccine may not be effective in pregnant women and their infants. Those familiar with SafeMinds will find this ironic as any of those affiliations appear to be a basis to immediately disregard any paper that goes against the SafeMinds positions.

Another example of the methods used by SafeMinds which are deservedly criticized is their approach to the issue of the flu-mist vaccine. They give citations which conclude that the flumist vaccine (which is thimerosal free) is more effective than the injected vaccine. However, SafeMinds stops short of a clear statement such as, “Ask for the nasal spray version of the vaccine”. Why? They have no problem making a clear decision for their readers in regards to avoiding mercury. Why not recommend a vaccine that they claim is safer and more effective? Why not recommend a vaccine? Many critical readers would question whether SafeMinds is, as they would like to say, an organization promoting safer vaccines or if they are, instead, an organization which can not bring itself to recommend a vaccine because they will not support a vaccination.

Can you “get the facts” from SafeMinds? Well, you won’t get all the facts in any place as there is so much material. But, one paper I couldn’t find on the SafeMinds website was this very recent one:

Eick, A., et al, Maternal influenza vaccination and effect on influenza virus infection in young infants.

Here’s the abstract:

Objective To assess the effect of seasonal influenza vaccination during pregnancy on laboratory-confirmed influenza in infants to 6 months of age.

Design Nonrandomized, prospective, observational cohort study.

Setting Navajo and White Mountain Apache Indian reservations, including 6 hospitals on the Navajo reservation and 1 on the White Mountain Apache reservation.

Participants A total of 1169 mother-infant pairs with mothers who delivered an infant during 1 of 3 influenza seasons.

Main Exposure Maternal seasonal influenza vaccination.

Main Outcome Measures In infants, laboratory-confirmed influenza, influenzalike illness (ILI), ILI hospitalization, and influenza hemagglutinin inhibition antibody titers.

Results A total of 1160 mother-infant pairs had serum collected and were included in the analysis. Among infants, 193 (17%) had an ILI hospitalization, 412 (36%) had only an ILI outpatient visit, and 555 (48%) had no ILI episodes. The ILI incidence rate was 7.2 and 6.7 per 1000 person-days for infants born to unvaccinated and vaccinated women, respectively. There was a 41% reduction in the risk of laboratory-confirmed influenza virus infection (relative risk, 0.59; 95% confidence interval, 0.37-0.93) and a 39% reduction in the risk of ILI hospitalization (relative risk, 0.61; 95% confidence interval, 0.45-0.84) for infants born to influenza-vaccinated women compared with infants born to unvaccinated mothers. Infants born to influenza-vaccinated women had significantly higher hemagglutinin inhibition antibody titers at birth and at 2 to 3 months of age than infants of unvaccinated mothers for all 8 influenza virus strains investigated.

Conclusions Maternal influenza vaccination was significantly associated with reduced risk of influenza virus infection and hospitalization for an ILI up to 6 months of age and increased influenza antibody titers in infants through 2 to 3 months of age.

So, vaccinating a pregnant mother reduces the risk of the infant getting the flu (and getting hospitalized as a result). That is contrary to the message I see coming from SafeMinds. They do host another, older study that showed no statistically significant difference in children of vaccinated or unvaccinated mothers. Will they update their webpage to include this new study?

SafeMinds does bring up some valid questions on vaccine safety. And, contrary to how they like to present the discussion, vaccines (and all medical procedures) are not above challenge. However, they tend to use safety questions more as a tool rather than as honest discussion points. Perhaps I missed it, but can you find them bringing up these questions? How can we make influenza vaccines more effective? Isn’t that a laudable goal? Isn’t a universal influenza vaccine be a good goal, rather than the current method of trying to guess which specific strains will be in circulation for the upcoming season? Why haven’t simple safety improvements been made sooner. Changes such as the move to cell-based cultures over egg based cultures which run the risk of allergic reactions. Note that a new flu vaccine plant was being built in the US which would make the move to cell based cultured vaccines. Instead they concentrate on mercury and autism–mercury being the most thoroughly studied vaccine ingredient when it comes to autism (as in, multiple studies, large studies, good studies, have failed to find a link).

What would you expect if you gave $1,500 to an “autism” charity

22 Nov

If you do a Google search for SafeMinds the link you get says “SafeMinds Autism Mercury Thimerosal”. SafeMinds considers itself to be a part of the “Autism Collaboration” (which, as far as I can tell, is the group that is supporting Andrew Wakefield now that he has lost his job with Thoughful House). A member of SafeMinds holds a chair on the Interagency Autism Coordinating Committee.

So I think it safe to say that they pitch themselves as an autism charity. If you were to donate, say, $1,560, would you expect some or all of that money to go towards something that might help the autism community?

Well, if you had paid for the the Pass the Popcorn but HOLD THE MERCURY! Safeminds Theatre PSA Campaign that SafeMinds recently put on, you would be mistaken. The campaign was an effort to raise money to put this public service announcement (PSA) into theaters this week.

You can find details, where else, on the Age of Autism blog. If you go there, you will see that three people donated at the $1,560 level, each such donation would put the PSA on 25 screens all week in New York or Los Angeles. Many others donated at lower levels.

The Age of Autism had another fund-raiser recently. That story was met with skepticism even though it was, I have been told, supported by Andrew Wakefield himself. The fundraiser was for legal aide for an autism family. So far, about $1800: enough to put the PSA on a little more than 25 screens. None of the prominent “editors” of the Age of Autism blog came forward in support.

SafeMinds. Age of Autism. At least you know what their priorities are. Autism isn’t number 1, vaccines are.

One might respond that to SafeMinds (and Age of Autism), vaccines and autism are not separate issues. They still subscribe to the idea that thimerosal in vaccines caused an autism epidemic. That by preventing thimerosal containing vaccines being given to infants and pregnant women is, in their view, preventing autism.

To that I answer: why spend money putting the PSA on screens in Los Angeles? In 2006, California law prohibited administering thimerosal containing vaccines to children under 3 and to women who are pregnant. Yeah, they are warning pregnant women and parents of young children against—something they aren’t going to get anyway. But that doesn’t stop SafeMinds from putting an image of a syringe next to big puddles of mercury in front of families.

addendum: it appears that at least one theater chain said no to the PSA.

Reading Age of Autism – All I can handle, I’m no Vladimir Nabokov

13 Nov

I read Dan Olmsted’s latest post on Age of Autism and was reminded I had yet to publish a closing post on my experiences with the book. Here’s a quote from Dan:

It’s doubly disappointing to see traditionally progressive outlets – from Salon to Daily Kos to The Atlantic to National Public Radio and PBS – ignore the evidence presented in our book and so many other places, twist the facts they can’t deny, belittle those who believe otherwise including beleaguered autism parents, and glibly trumpet tired reassurances that the concern over vaccines has been “asked and answered,” that “study after study” has refuted any relation, and that continuing to point out disturbing patterns of evidence to the contrary endangers children and infants.

Quick translation for you: “Waaah, nobody liked our book or thought it was valid. What a bunch of pooh-pooh heads!”

The embarrassing truth for Dan Olmsted and Mark Blaxill is that their book has been still-born. Take a look at the Amazon rankings compiled by Broken Link and its hard to come to any other conclusion. But why has this happened?

First off, the book is badly written. Its not an easy read in the way that Evidence of Harm was. Of course the style is different but Age of Autism is not even a well written poor story.

Secondly, the content is – well – embarrassingly one sided. Whilst B & O claim to be not anti-vaccine, the whole book – particularly part II is rife with anti-vaccine sentiments designed not so much to lead the reader to a conclusion but to batter the reader over the head with the conclusion B & O reached before sitting down to write even.

Thirdly, the content is old hat. There is literally nothing new in the book. For those of us who have followed the the whole story, AoA has nothing _new_ to add to the overall scenario. Whereas Defeating Autism, Autism’s False Prophets and Evidence of Harm all had something _new_ to add to the story, AoA merely dully repeats truthiness from 3 or 4 years ago and couples it with a retelling of historical speculation that simply reiterates what everyone already knew – mercury isn’t so good for you.

So thats that for me reading purgatory. I’m reading something very much better now that I think Sullivan and I will be blogging at length in the new year.

Reading Age of Autism Part 6 – everything old is new again

21 Oct

If I had to take a guess I’d say Part I of Age of Autism was written primarily by Dan Olmsted and (so far) Part II is written primarily by Mark Blaxill. Why? Well, Part I is well written bullshit with a decent narrative flow and is full of new (if wrong) ideas. Part II has so far regurgitated the Amish and Somali episodes and I’m in the middle right now of a really dragging account of how Andrew Wakefield got into the game during which I have actually groaned aloud twice and had to put down a few times and watch something more intelligent on TV – something like When Stunts Go Bad for example. A decent writer Mark Blaxill is not.

Part II is also very much more heavy on the out-and-out anti-vaccination rhetoric and if I want to give a dispassionate, honest review I’d have to say that the differences between Part’s I & II are more than glaringly obvious – they’re more obvious than a fluorescent painted whore in a Kansas Church. Its a shame really as I have a penchant for well put together bullshit and Part I was exactly that. Part II is badly constructed bullshit. Imagine a shanty town constructed next to St. Paul’s Cathedral and thats what Parts I & II of Age of Autism stand together like.

So everything old is new again, its like taking a trip back in time as we see Simon Murch et al get introduced and the concept of Crohn’s Disease being marketed as vaccine caused being touted around as a viable hypothesis (I’m not up to the MMR/autism thing yet).

Now don’t get me wrong I’ve nothing against a trip down memory lane but all the hallmarks of a bad writer and worse editing are here aplenty and its really not much fun reading about how Simon Murch is the leading etc etc. I’m sure he is – in fact I _know_ he is but I can’t help but imagine the uninvested reader would find this focussing on frankly dull fact as exactly that – dull.

So basically same old same old so far. I’m moving house soon and won’t have web access for a week (eek!) but I’ll be reading and note taking don’t you worry. To be continued.

Safeminds defends treatments the FDA deemed “dangerously misleading”

18 Oct

The United States Food and Drug Administration (FDA) recently announced that they had sent warning letters to eight groups who were promoting chelation products without prescriptions and with unproven claims of efficacy.

Chelation is a mainstay of many alternative medical practitions, especially in autism. There is a hypothesis that autism is caused by mercury poisoning. Autism symptoms don’t look like mercury poisoning and multiple studies have been performed testing the hypothesis and shown no link. But the idea lives on. Autistics, mostly children, are subjected to chelation “therapy” to remove heavy metals from the body. After over a decade of this practice, there is still no demonstration that chelation does anything to help autistics. There are studies on Peruvian hamsters which are used to support the idea that autism is caused by mercury poisoning. No, seriously, one of the supports for the mercury/autism link is a study on Peruvian Hamsters. Just goes to show how tenuous the “science” backing chelation is.

Here is part of the FDA statement:

Federal regulators are warning eight companies to stop selling so called ‘chelation’ products that claim to treat a range of disorders from autism to Alzheimer’s disease.

The Food and Drug Administration (FDA) says the companies have not proven their products are safe and effective in treating autism spectrum disorder, cardiovascular disease, macular degeneration, Parkinson’s disease or any other serious illness. Some of the companies also claim their products can detect the presence of heavy metals in the body in an attempt to justify the need for chelation therapy.

One of the more vocal organizations promoting the mercury/autism “link” is a group called SafeMinds. So it isn’t a surprise that they would respond to the FDA warnings..

Here is the opening paragraph from the SafeMinds response:

The FDA issued a media release and held a press conference on over-the-counter chelating products. A recording of the press conference was made available this afternoon (recording available at 800-839-7073). FDA issued warning letters to 8 companies promoting over-the-counter nutritional supplements for chelation therapy (HERE). Chelation is a method of removing heavy metals from the body. The FDA warning has no bearing on prescription chelation drugs which are used under the supervision of medical professionals.

“Nutritional Supplements”? How does a chelator count as a “nutritional supplement”? The human body does not produce chemicals like DMSA which are used for chelation. SafeMinds is well aware of the falacy of the “nutritional supplement” argument after the recent debacle over the chelator turned “supplement” OSR, which had to be pulled from production.

So, SafeMinds starts downplaying the fact that chelators are drugs and, as such, should be regulated.

But they quickly change the tune and acknowledge that these are drugs: “The FDA warning has no bearing on prescription chelation drugs which are used under the supervision of medical professionals.”

As I read this, I had to ask myself “Why did SafeMinds chose such imprecise language?” Let me explain:

Assume a medical professional, say a chiropractor or a nutritionist, “supervises” my use of the prescription drug DMSA, but sells the drug to me without a prescription (as these professionals can not write prescriptions). That would fit into the SafeMinds interpretation, but is clearly not the intent of the FDA statement.

Here is an accurate statement: The FDA warning does not have bearing on the use of chelation drugs prescribed by and supervised by a medical professional.

Continuing with the SafeMinds statement:

In its press conference, the FDA implied that chelation products were being used by parents of children with autism without a doctor’s supervision, but on questioning by reporters, FDA representatives were unable to back up the claim with any evidence of use of OTC chelation products by autism parents or of their use without medical supervision. The FDA asserted that the OTC products being promoted were dangerous and could lead to kidney damage, dehydration and death. On questioning by reporters, the FDA admitted that it had received no reports of adverse reactions to the products or to chelation in general, other than 1 death 5 years ago which was due to a medical error and in which a prescription drug was used.

Note that SafeMinds chose their words carefully. They don’t state that the practice doesn’t occur. SafeMinds just states that the FDA didn’t have the evidence on hand of the “use of OTC chelation products by autism parents or of their use without medical supervision.”

Is Safeminds so out of touch with the online autism community that they can’t find groups promoting over-the-counter (OTC) chelators by autism families? The practice is common. Surely SafeMinds members peruse the exhibitor booths at the parent-conventions (like Autism One).

Google search: “how to buy DMSA without a prescription”. Lot’s of hits.

Here is hit #2: dmsachelation.com/autism/. Pretty clear they are targeting autism treatment there, just from the URL. The blurb on Google for this site? “This page IS intended to show you where to buy DMSA without a prescription. You can get DMSA prescribed, however the cost will range from $2-3 per pill. …”

I didn’t capitalize “IS” in that statement, they did. They wanted to emphasize that one could buy chelators without a prescription.

SafeMinds states that the FDA has received no reports of adverse events from chelation in general. I find this odd. The FDA must not follow online autism parent groups such as those on Yahoo. The FDA must not have read transcripts of the Omnibus Autism Proceeding, which included a description of a child who regressed after being given chelation therapy (under the watchful eye of a prominent alt-med doctor). The FDA must not have performed a google search on chelation deaths with site set to CDC.gov.

First hit, “Deaths Associated with Hypocalcemia from Chelation Therapy — Texas, Pennsylvania, and Oregon, 2003–2005“.

When it comes to the question of “why” adverse events are not commonly reported I am again reminded of the OSR fiasco. The company that sold OSR specifically told their clientele to contact the company in case of adverse reactions. No mention was made of contacting the FDA (which can be done here). I guess I could search the websites of the groups that promote OTC chelators to see if they inform their clients of the ability to report their drug/supplements to the FDA. Somehow I feel confident that I would be able to find groups (possibly many or most) do not give that information.

SafeMinds posted their statement on the blog they sponsor, The Age of Autism. Another sponsor of that blog is Lee Silsby, a compounding pharmacy. They list chelators such as DMSA and EDTA under the category “autism treatments” (Specialties | Autism Treatments | Transdermal DMSA Cream, or Specialties | Autism Treatments | EDTA (calcium)). Not under “heavy metal poisoning” treatments, autism treatments.

The Autism Research Institute, a group which promotes much in the way of alternative medicine as therapies for autism, has a chart that is often used to promote chelation. In their survey, they claimed that over 70% of parents reported that their child got better with chelation. The survey has been often criticized as being unscientific and very biased. Even with this biased sample, 3% of parents reported that their child “got worse” with chelation.

A couple side notes are worth mentioning. First, in that survey the ARI list chelation under “Biomedical/Non-Drug/Supplements”. Non drug? Supplement? I doubt the FDA will agree. Second, the ARI survey lists secretin therapy as beneficial for autism. Secretin hit the news in the 1990’s as a potential autism therapy and has since been shown to be no more effective than a placebo. The survey is very, very biased towards “biomedical” treatments.

Surely SafeMinds is aware of this survey. As in, definitely they are aware of it. Just as Safeminds are certainly aware of the child in the Omnibus proceeding who suffered after chelation. But SafeMinds pretend as though there are no adverse reactions. It is disingenuous, to say the least.

SafeMinds ends their statement with this paragraph:

SafeMinds agrees with the FDA that products being promoted as drugs and biologics should have thorough and unbiased assessments for safety and that parents should work with their healthcare professionals when considering health interventions. SafeMinds feels that FDA has tried to cast autism parents in a negative light without any supporting evidence, by implying that autism parents were giving their children dangerous products without medical oversight. Only on questioning by the media did the FDA have to back off from its wild claims. SafeMinds feels the FDA owes the autism community an apology.

Basically, SafeMinds have taken the Human Shield defense. Rather than actually discuss the facts, SafeMinds attacks the FDA for “wild claims” and claims that the FDA owes the autism community an apology.

From the perspective of this autism parent I would say, yes, the FDA owes us an apology: for taking so damned long to address this issue. The abuse of chelation as a “treatment” for autism has been going on for many years. It is about time that the FDA cracked down and made the “wild claim” that a prescription drug should be given by perscription.

Heck, the FDA isn’t even making the “wild claim” that toxicology treatments should be performed by toxicologists. Just someone with a prescription pad.

Why isn’t SafeMinds telling autism families to seek out medical toxicologists to test and treat heavy metal poisoning? The answer is painfully clear. The methods of diagnosis and treatment that groups like SafeMinds promote do not compare to the methods used by those trained specifically to treat heavy metal intoxication.

Should make one pause to wonder.

Reading Age of Autism Part 5 – hodge podge of ideas

14 Oct

Chapters 5 and 6 are quite difficult to blog about. On the surface they carry a surfeit of information but somehow all that useful information gets lost in the authors determination to make the facts fit their ideas.

In Chapter 5 we’re introduced to the idea that ethylmercury in two forms was invented. Fungicide and medicinal. And thats about it. There’s little that’s contentious to blog about.

In chapter 6 however we finally start to meet Kanner and Asperger’s case study kids. This had the potential to be one of the most thrilling episodes of the book but from a literary standpoint it is badly botched and badly edited. It starts off reasonably well with condensed histories of a few of Kanner’s kids but then starts to degenerate into the realms of silliness desperately shoehorning the kids parents into two categories – ‘the fungicide cluster’ and ‘the medical cluster’. For example, Kanner’s Case 1 – Donald T – is placed by the authors into the fungicide cluster….why? Because he lived in the vicinity of Forestry work.

They have better luck with Fredrick W (Case 2) as his dad was a plant pathologist but even this is still not evidence. Correlation does not equal causation after all and the authors give no real insight into _how_ they think these kids were made autistic by ethylmercury, just offering some fairly scant evidence that one parent might have worked with mercury or that they lived fairly close to where fungicide was used.

The authors get going with gusto when they reach the medical cluster – why? Because now they can finally get their teeth into the _real_ source of their displeasure – vaccines.

The city’s residents were bombarded…

Page 180

…heightened risk of infant vaccination…

Page 181

One child had a mum who was a Paediatrician. However as they also state:

…there is an association in time – one we concede is speculative – with…the first thiomersal containing vaccine.

Page 184

Four of Kanner’s kids had dads who were psychiatrists. The authors claim this is more evidence as the standard of care for neurosyphilis was still mercury. But not, you’ll note ethylmercury. Blaxill and Olmsted have spent three chapters outlining the symptoms of mercury poisoning via neurosyphilis and hammering home the point that autism is _new_ with a _new_ set of symptoms and that various types of mercury poisoning produce differing symptoms. To go back all of a sudden and claim that now its _not_ new is more than a little duplicitous.

Four of Kanner’s kids have no connection to either fungicides or medicine via parent occupations. Blaxill and Olmsted attempt to explain these away by saying that these kids probably lived in areas where universal vaccination was in place. This is worse than speculative – its tenuous.

And speaking of tenuous:

Donald…underwent a series of treatments with Gold Salts that lasted several months…[which were]…the standard remedy for JRA [Juvenile Rheumatoid Arthritis] .

….

His arthritis cleared up…[b]ut something even more remarkable happened…the defining features of his disability lessened dramatically and permanently.

Page 197, inserts mine

What Blaxill and Olmsted fail to mention is that it would be _impossible_ to chelate mercury from the body using Gold Salts. Why? Because gold only dissolves mercury when both in their metallic state. Donald was administered Gold _Salts_ .

And lets look at these features of Donald T’s which defined his disability: nervousness, extreme anxiety and lack of sociability. The latter, yes, that’s obviously a clear autistic trait but the former two? What have they got to do with autism from a diagnostic _defining_ stance? The answer is nothing.

So here we have much ado about nothing. Donald was given a substance that could not _possibly_ have chelated him and even if it had, the most it did in terms of ‘curing’ his autism was to make him more social and even if it _did_ make him more social even the authors admit it only ‘lessened’ his unsocial nature, it didn’t remove it.

The book overall is starting to edge into familiar AoA (the website) territory now. Things that really shouldn’t be left unsaid are being so and things that are said are being squeezed dry of factual content in order to meet a pre-conceived agenda. Thats no good for a scientific approach.

Reading Age of Autism Part 4 – Stretching the truth

13 Oct

Over the last few days, I’ve tried to show how the authors of Age of Autism have retro-fitted the symptoms of mercury poisoning to try and make them await a diagnosis of autism. They have suggested things like tremors, paralysis, reddening of extremities and various other things are very similar to symptoms of autism. Or at least, they _will_ suggest these things in upcoming chapters (I’ve already noted a large passage on the thoroughly debunked Bernard paper later on in the book). They are also working hard throughout Chapters 1 – 4 to enforce the idea that things like schizophrenia, bipolar, Down syndrome and of course autism are _new_ things.

Nowhere (so far) in the book is this more apparent than Chapter 4 (entitled Pollution):

But were these men really seeing something that had been missed for centuries? Or did they happen to be in a position to observe a cluster of cases of chronic disease as it first appeared?…What if they were diseases born of the newest phase of human civilization, children of coal combustion, distributed mechanical power and the Industrial Revolution?

Page 125

However, a large block positioned itself in front of Olmsted and Blaxill in the shape of Dr John Haydon Langdon Down. The first person to classify what later came to be called Down Syndrome. However, as is clear from the work Of Dr Darold Treffert, he also found both early onset and late onset autism.

The authors don’t like this. It puts the carefully emerging hypothesis in grave danger. Why? If autism existed before the emergence of ethylmercury then their ideas are moot, the part of Chapter 5 I have read so far makes this clear. This is the very hypothesis they are working towards. So in order to protect their hypothesis, they rubbish Darold Treffert’s findings.

Down classified two groups that contain descriptions of autism. Groups he called ‘developmental’ (what might be called ‘regressive’ today) and ‘accidental’ (autistic from birth). First Blaxill and Olmsted tackle the problem (from their viewpoint) of ‘accidental’ autism.

Unfortunately, none of these accidental cases are ever fully described and so its impossible to distinguish between true autism cases or just the scattered presence of autistic behaviours.

Page 129

And then ‘developmental’ autism.

In making the case for Down as an early observer of autism, Treffert relies on his idiosyncratic willingness to set aside the timing of onset as a relevant marker for an autism diagnosis. Most of the cases he proposes as autistic wouldn’t pass that bar for other observers.

Page 129

However, in regard to ‘accidental’ autism I urge the reader to look at the following passages Treffert quoted from Dr Langdon Down:

“bright in their expression, often active in their movements, agile to a degree, fearless as to danger, persevering in mischief, petulant to have their own way. Their language is one of gesture only; living in a world of their own they are regardless of the ordinary circumstance around them, and yield only to the counter-fascination of music.”

…

“I know nothing more painful than the long motherly expectancy of speech; how month after month the hopes are kept at high tension, waiting for the prattle which never comes. How the self-contained and self-absorbed little one cares not to be entertained other than in his own dream-land, and by automatic movements of his fingers or rhythmical movements of his body… they have well-formed heads, finely-textured skins, well-chiseled mouths, sparkling eyes, features when in repose leading one to augur only brightness and intelligence… he runs to you when called but makes no response in words. He returns your kiss with a bite, and runs away with agile steps, rolling his head with a horizontal swaying motion…”

This is the group Blaxill and Olmsted claim are not described enough. Hardly. This is autism.

In regard to the ‘developmental’ group, Treffert quoting Langdon Down describes them thus:

In these children the early months of childhood were uneventful and “intelligence dawned in the accustomed way.” But later, around age six or so, ” a change took place in that the child’s look had lost its wonted brightness; it took less notice of those around it; many of its movements became rhythmical and automatic.” There was “cessation of increasing intelligence”, deferred speech and “lessened responsiveness to all the endearments of its friends.” Dr. Down writes “I have had many examples of children who had spoken well and with understanding, but who lost speech at the period of the second dentition, and had also suspension of mental growth.” Dr. Down provides several examples. One was a boy who “attracted no particular attention during the first six years of life” but then “during the period of second dentition” suddenly lost speech. “He heard everything that was said, but never replied to a question.” This child did gradually regain some speech but “afterwards always spoke of himself in the third person.” The other case example was that of two brothers who also “both lost speech at the period of second dentition.”

Blaxill and Olmsted dismiss this second category because of the phrase _first dentition proceeding_ stating that this means these kids were too old for an autism diagnosis. However, late regression is far from unknown in modern times. The author and ex-Guardian columnist Charlotte Moore describes her son Sam undergoing several regressions way past the modern ‘cutoff’ age of three.

I emailed Dr Treffert to see what he made of Blaxill & Olmsted’s claims. Here is his email to me quoted in full.

The authors, to the contrary, understate the remarkably perceptive and accurate observations Down made of what is unmistakably early onset and late onset autism. I discuss those highly accurate before-their-time observations by Down
in my internet posting of an article titled “Dr. J. Langdon Down and Developmental Disorders” in the articles section of the savant syndrome website at www.savantsyndrome.com. The authors omit many of Down’s terms and traits which apply so often to autism–
speaking in the third person; “fearless as to danger”; “living in a world of their own”; fascination with music; “self-contained” and “self-absorbed”; in a “dream-land”; “automatic movements of fingers or rhythmical movements of the body” and “runs to you when called but makes no response in words”. And so on and so on. Likewise Down makes clear reference to what we now call “early onset” and “late onset” forms of autistic disorder. I refer your readers to the article above where Down, while not using those present day terms, clearly lays out the existence of those two differing-onset scenarios.

Of equal interest is the fact the Down choose the term “developmental retardation” to describe this form of disorder separate from “congenital” and “accidental” types of “retardation”. Now in fact, over a century later, autistic spectrum
disorders are classified as “Developmental Disorders”. Another before-its-time credit to Dr. Down.

I read Down’s lectures in my effort to trace the beginning descriptions of savant syndrome. As I read about savant syndrome, I was surprised to find such an early description of “developmental retardation” which we now call autistic spectrum disorder by Dr. Down more than a century ago. I wrote my article above to provide some context for present day consideration of an ‘epidemic’ of autism. I wanted simply to point out that autism did not begin with Dr. Kanner’s description of it in 1943, but rather has no doubt been present in some portion well before that time. Dr. Down’s accurate description of both early onset and late onset autism, while he did not use that terminology, provided some documentation, and perspective, that autistic disorder has been around for a very long time. And that fact needs to be considered in looking at incidence and prevalence at present day levels.

The best way to answer the book’s portrayal of my observations and conclusions regarding Dr. Down and autism, is for the reader to go to my article and draw their own conclusions. I am sure they will agree that what Dr. Down described was early and late autistic disorder in unmistakable terms.

*Please note my conversation with Dr Treffert is ongoing, I’ll publish the whole conversation in a separate blog post* .

Later on, with irony so thick you could almost taste it, Blaxill and Olmsted after waving aside clear descriptions of autism say (regarding a separate matter):

There was no evidence, no proof, just an elaborate exercise in anthropological speculation that was also at odds with the facts.

Page 134

So far, that’s the best description of Age of Autism I’ve yet heard.

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