Pass the Maalox: An AoA Thanksgiving Nightmare

30 Nov

It is no secret that I don’t appreciate the humor or the pseudoscience at the Age of Autism blog. Frankly, the pseudoscience is worse than the humor as it is so damaging to the autism communities. But, both are an embarrassment.

So, you can imagine my reaction to their recent post “Pass the Maalox: An AoA Thanksgiving Nightmare“. If you haven’t seen it, someone spent her Thanksgiving holiday with photoshop making a picture of the favorite people to hate look like they are eating a baby.

You know the reaction they wanted: outrage. You know the one they actually get: a heavy sigh. As in, “Oh, well, here we go again with AoA’s embarrassing approach to autism blogging”

Why blog it? Because it is a good introduction to what I’ve wanted to write since the recent articles at the Chicago Tribune. (if you haven’t read them, do. email them to all those well meaning people who keep sending you links to miracle cure websites. They are here and here ).

What is the message I wanted to write? Simple. To all the Age of Autism readership: people like the Tribune writers, Tom Insel, Paul Offit and others are not your enemy. These people are not standing in your way.

Your lack of good science is what is standing in your way.

Unfortunately, that isn’t likely going to change. You flat out stated that Autism is just a misdiagnosis for mercury poisoning. You were wrong, but you can’t admit it. You bet everything on the idea that mercury and/or the MMR vaccine caused an epidemic of autism. You were wrong, but you can’t admit it.

The “nightmare” you are living is of your own doing. You created a false model of autism. It isn’t the fault of the many (MANY) observers who tell you you are wrong.

Your lawyers and “scientists” put together the best story they could in the vaccine court–the Autism Omnibus Proceeding. They claimed that MMR or thimerosal caused autism, and set out to prove it. They failed.

You really should read the expert reports submitted for the Autism Omnibus Proceeding. The people who wrote these reports aren’t your enemy. The facts they report are the enemy of the house of cards you built.

Reports from the Cedillo trial

Report of Jeffrey Brent, toxicologist.

Report of Edwin Cook, psychiatrist and geneticist.

Report of Eric Fombonne, psychiatrist and epidemiologist.

Report of Robert Fujinami, immunologist.

Report of Michael Gershon, neurogastroenterologist.

Report of Diane Griffin, immunologist and virologist.

Report of Stephen Hanauer, gastroenterologist.

Report of Christine McCusker, pediatric immunologist.

Report of Brian Ward, neurovirologist

Report of Max Wiznitzer, pediatric neurologist.

Report of Andrew Zimmerman, pediatric neurologist.

Declaration of Nicolas Chadwick, Ph.D.

Critique of Dr. Hepner’s letter, by Stephen Bustin, world expert on PCR.

Affadavit by Stephen Bustin, world expert on PCR.

Affadavit of Bertus Rima, molecular biologist, measles virus expert.

Reports from the Dwyer trial
Report of Bennett Leventhal, child psychiatrist

Reports form the Hazelhurst Trial
Report of Thomas MacDonald, immunologist.

Report of Christine McCusker, pediatric immunologist.

Report of Robert Rust, Pediatric Neurologist.

King Hearings

Report of Jeffrey Brent, toxicologist.

Report of Manuel Cassanova, psychiatrist.

Report of Steven Goodman, epidemiologist.

Report of Jeffrey Johnson, toxicologist, expert on oxidative stress.

Report of Dean Jones, professor of medicine.

Report of Thomas Kemper, neurologist.

Report of Catherine Lord, psychologist, world expert on autism.

Report of Richard Mailman, professor of psychiatry, pharmacology and neurology.

Report of L. Jackson Roberts, professor of pharmacology and medicine.

Report of Patricia Rodier, expert in autism and mercury toxicology.

Report of Sir Michael Rutter, professor of developmental psychopatholgoy, world expert on autism.

Letter from Carlos Pardo-Villimazar to Thomas Kemper


Another expert report by Eric Fombonne


Expert report of Robert Rust


Another report of Robert Rust

Supplemental report of Jeffrey Brent


Expert report of Michael McCabe

Expert report of Bertus Rima

Supplemental report of Brian Ward

Supplemental report of Max Wiznitzer

Letter from Michael Oldstone to Brian Ward

Another supplemental report by Max Wiznitzer

News Reports demonstrating misuse and misunderstanding of autism science

Autism treatment: Science hijacked to support alternative therapies
By Trine Tsouderos and Patricia Callahan, Chicago Tribune

Researchers warn against misusing report

Autism treatments: Risky alternative therapies have little basis in science
By Trine Tsouderos and Patricia Callahan ,Tribune reporters

Experimental treatments

Autism treatment: Success stories more persuasive to some than hard data
By Trine Tsouderos and Patricia Callahan ,Tribune reporters


Questionable treatments for children with autism


Autism doctor: Troubling record trails doctor treating autism
Second of two parts By Patricia Callahan and Trine Tsouderos ,Tribune reporters

Miracle drug’ called junk science
By Trine Tsouderos ,Tribune reporter


An Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All
Amy Wallace, Wired Magazine

You folks at the Age of Autism would like to pretend that there are a few people standing in the way of the “obvious” conclusions that mercury and the MMR vaccine caused an autism “epidemic” and that alternative medicine offers a cure.

You are wrong on every count. It isn’t a few people. It is almost everyone who looks at the “data” you have to offer. It isn’t just epidemiology, either. The mechanisms you present are just not supported by any real science. Your problem isn’t that there are people in your way. The problem is that your “data” is junk. Sorry, there is no nicer way to put it. There is no hard evidence for an epidemic. If there is a real increase in real autism incidence, you guys are actually standing in the way of finding the real causes. As to the “cure” offered by alternative medicine, that’s my thanksgiving nightmare: the idea that some “alternative” doctor from the Age of Autism stable is treating my child with poorly conceived “therapies” based on the same junk science you folks promote.

That sends shivers up this autism parent’s spine.

22 Responses to “Pass the Maalox: An AoA Thanksgiving Nightmare”

  1. Vindaloo November 30, 2009 at 15:41 #

    Once upon a time I thought that AoA had a truly media-savvy puppeteer pulling their strings. It’s now obvious that either they did and then fired the brains or they were just lucky enough to make some decent decisions early on that helped make them seem like normal people who were just duped into believing the woo.

    But it’s clear they weren’t able to hold back the tide; their true, extremist, and freakish nature is bubbling up through the veneer of normalcy.

  2. David21 November 30, 2009 at 19:55 #

    Sullivan, do you have the links to the reports submitted by Tom Clarkson and Laslo Magos? Since they were paid by taxpayer dollars I assume they are accessible. Wonder why they were withdrawn at the last minute? Can you think of any 2 people more published on mercury toxicity than these guys? Hope you can help me out.

    • Sullivan November 30, 2009 at 20:22 #

      David21,

      I don’t know if those reports are public–or were ever submitted. I know they were scheduled to appear. Is there any comments somewhere that they actually did write reports?

      The fact that they were paid by taxpayer dollars isn’t enough. They need to get permission to make them public. If, for example, the reports had information included by the petitioners, the petitioners would have a say in whether the reports can be made public. That said, the entire point of the Omnibus was that the information would be made available for future use.

  3. David N. Brown November 30, 2009 at 20:32 #

    To AoA,
    The anti-Semites called. They want their blood libel back.

  4. Leila November 30, 2009 at 20:42 #

    It’s an embarrassing to all autism parents… I hope most people understand that AoA represents only a misguided minority.

  5. Leila November 30, 2009 at 20:43 #

    I meant “embarrassment”

  6. David21 November 30, 2009 at 21:13 #

    Hi Sullivan, the reports by them were submitted and the day before they were suppose to testify it was announced that they would no longer be doing so. The petitioners were not given access to the reports. I wonder what conclusion they (Clarkson and Magos) had drawn? It’s amazing that the Special Masters did not find this manuever damaging to the respondents case.

    • Sullivan November 30, 2009 at 21:46 #

      The post didn’t get universal acceptance by the readership at AoA. In response to that, Age of Autism blog “editor” Mark Blaxil commented:

      The response this has gotten is certainly interesting. And while I have a certain sympathy for those who argue against ad hominem attacks (we need less name-calling and a more civil discourse on all the issues surrounding autism), I think we all need to recognize this is a CARTOON. And the apt metaphor on the table (pun intended), is that while the medical industry feasts off its excesses, pays off scientists for exercises in misdirection and pays toadies in the media for hit jobs on those who dissent, real children’s lives are consumed.

      For our friends who object, I’m not sure I would have chosen the image of the baby myself, but chill out a bit folks: we’re a blog, for chrissakes; it’s our job to be edgy. At the same time, all the faux outrage is more than a bit hypocritical; frankly, anything that makes the wackosphere vibrate with new forms of silliness is fine by me. Seriously, though, something horrible is happening to a generation of children and Michael Specter gets a free pass to call us nut jobs and denialists?

      This is Orwell reincarnate, you can’t make this stuff up.

      I guess that making us shake our heads in disbelief is worth the effort, in his mind. Making the autism communities look like a group of belligerent jerks is A-OK. Real children, and adults, are harmed by your sense of humor, Mr. Blaxill. Why can’t you see that making the autism community look like fools is damaging?

      Can someone explain the “you can’t make this stuff up” comment? He starts out saying it is just a blog piece, they are just being edgy…but “you can’t make this stuff up?” It’s made up, so chill, but you can’t make it up?

      Mark Blaxill chews up huge amounts of time at IACC meetings calling everyone who disagrees with him “denialists”. Yet, somehow it is mean when Mr. Specter uses the term on him?

      Sorry, got to go install a new irony-meter. This one just blew out!

  7. kwombles December 1, 2009 at 02:15 #

    I have a rebuttal to Blaxill’s nonsense up on Countering, as well as the url for the google news feed comment form. Since AoA admits it’s not news, it doesn’t need to be on the newsfeed. Wouldn’t it be nice to help them get to where they belong feed-wise?

  8. Broken Link December 1, 2009 at 12:59 #

    I’ve complained to google news. But I’m not hopeful this will help.

    I wonder where google draws the line. Suppose I was to set up a site that claimed that schizophrenia could be cured by drilling holes in one’s skull. And I set it up with editors, and multiple contributors, and called it a news site – would it be listed on google news?

  9. David21 December 1, 2009 at 16:54 #

    Sullivan, where are the expert reports from Clarkson and Magos buried?

  10. livsparents December 1, 2009 at 19:03 #

    “If there is a real increase in real autism incidence, you guys are actually standing in the way of finding the real causes.”

    It pains me to see AoA use the idea that there is a potential and possibly significant increase in autism to prop up the same old theories that simply don’t pan out; using the same old numbers that simply don’t add up anymore…

  11. roomybonce December 2, 2009 at 10:26 #

    Hi

    I’m from the UK with a recently diagnosed four year old. I think some of the ‘alternative’ therapies – i.e. those focussing on dietary changes & non-toxic supplements – can work, but the others are madness. The Tribune article spotlit the flaws in their science, but I don’t believe parents ignore the dangers in search of relief. I believe there’s a valid reason why they’re driven to such extremes. They fill a vacuum created by the failure of authorities to address the expanding nature of the Spectrum with a corresponding expansion in therapeutic approach.

    Parents of Autistic kids are in a strange space. Faced with an increasingly common disorder for which there is neither cure nor apparent cause, we are more vulnerable than most to the lure of the unorthodox. In an ideal world there would be a more global, more inclusive approach to Autism treatment that acknowledges the validity of certain biomedical advances and at least tries to regulate them. That it’s down to proactive parents to sift through the quacks to find the cures says everything I need to know about how far we are from that ideal, and how much mums & dads are willing to do to build better futures for their children, most of whom, in the eyes of everyday doctors, are condemned to an Institutionalised adult life before they’re even five.

    I can’t blame any parent for refusing to accept that, just as I’m appalled that the current orthodoxy will never guide the vast majority of more passive parents towards the help their kids need.

    So, to conclude, I’m not going to slate AoA unconditionally. They’re only symptomatic of a wider problem.

  12. Jennifer December 2, 2009 at 13:20 #

    Hi roomybonce,

    I’m a parent of a lovely young lady who just turned 13. She was diagnosed as she turned 3 with ASD, and now holds a diagnosis of PDD-NOS. She’s doing great, she’s in Grade 7 in a private school, and just had her report card. As a proud parent, I’d like to quote a bit to you: “X is a hard working student. She strives for perfection. However, sometimes this translates into a fear of making mistakes. X has become more aware and accepting of the idea that part of the learning process involves making errors. She is very responsible. . . .X is a good math student She seems to enjoy the subject. She has a strong grasp of her times tables which greatly assists here in learning more advanced material. . . X possesses a keen interest in music and her sight reading and performance on the flute show improvement . . . ”

    At the time of her diagnosis, she had only a few dozen words. She had lost words. She wasn’t potty trained. She preferred to spend most of her time watching TV, and was highly resistant to change.

    She has not been on the GFCF diet, chelation, HBOT, nothing but reasonable doses of regular vitamins and fish oil.

    I’m telling you about my child to give you a story to counter the AoA stories. The fact is that there is a great deal of hope for children diagnosed with ASD, particularly today, when a very large fraction of them do not also have mental retardation. And remember, it’s very difficult to properly assess the IQ of non-verbal children (see the work of Laurent Mottron).

    You make a few statements that are widely held as popular belief, but don’t have grounding when looked at more closely.

    1. ASD is most likely not an increasingly common disorder. It is simply that it is better diagnosed. Many children in the past did not receive a diagnosis because their symptoms were milder than fit the official criteria. Most/all of the rise in the number of diagnoses is due to the broadened criteria. There’s no need to suggest new treatments for a new disorder.

    2. Why do you think that non-orthodox treatments (diets and supplements) can work? Proper studies, where the parents and clinicians don’t know which children are receiving treatment have shown no benefit. Yes, there are stories of improvement, but there are also stories (like mine) of improvement without using these things. And science IS looking in more detail at these things. Parents are not being left in a vacuum. If your doctor could recommend any of these alternative treatments, he/she would. The fact that the “authorities” don’t recommend these treatments only means that they haven’t been shown to work. How can they, in good conscience, recommend something that can be expensive and difficult (or even dangerous), and has no evidence of being beneficial?

    I know that you are new to this. Please read more widely on this site, and on http://www.scienceblogs/insolence and in the scientific literature http://www.pubmed.gov

    If you want to read the crank websites like AoA, be aware that they are trying to sell you supplements, HBOT, chelation, IVIG, stem cells etc. The quacks make a HUGE amount of money off of parents, and they are fighting to protect that.

  13. roomybonce December 2, 2009 at 22:32 #

    Hi Jennifer.

    Thanks, yes I am pretty much a “greenhorn” (do you still use that term?) when it comes to this sort of stuff, but by saying it’s a growing condition I’m only referring to the increasing number of children receiving a diagnosis. It’s ‘more common’ in the sense that Sofia’s school, at least, is dealing with far more Autism than they were even five years ago, which, as you say, is probably down to better monitoring of a child’s ‘milestones’.

    When Sofia fell short of these markers a very efficient mechanism did, indeed, kick in to work out why, but I’m losing count of how many perfectly healthy friends have said “Well, I didn’t speak properly till I was seven. Should I have been diagnosed autistic?” and that’s actually made me pretty wary of overanalysing our daughter too early, even though I can see that she’s somehow ‘different’. I may be wrong, but I think she’ll learn to cope (and she also loves the flute!)

    As for alternative therapies, I’ve read too many positive stories to totally discount diets. They’re unnecessary in most cases – obviously in yours and certainly in mine – but I’m not so sure that every GP is so on the ball. If they were, AoA wouldn’t exist. If every parent felt their Doctors were doing their utmost, AoA would be a voice in the wilderness rather than the effective lobby they seem to be. Chelation & Hyperbaric Chambers may well be insane, but saying AoA is based on a delusion – that authorities are turning a blind eye to the toxicity of 21st century life at the expense of our children’s minds – isn’t going to stop parents seeking answers from them, because only one thing is certain: neither side yet knows what causes Autism.

    Until there’s a breakthrough, AoA – and many mums & dads – will continue to tilt at windmills, which is fine until they endanger children in the process. I think we agree that’s just nuts.

    In the meantime, thanks for the links. I’m starting on them right now.

    • Sullivan December 2, 2009 at 22:41 #

      “Until there’s a breakthrough, AoA – and many mums & dads – will continue to tilt at windmills”

      The windmill tilting will continue even if there is a breakthrough. Many conditions that have effective therapies still have alternative medicine groups.

  14. Jennifer December 2, 2009 at 22:50 #

    Yes, Sullivan, I agree. Even if effective treatments for autism were found, they’d never be effective enough for parents who believe that their “real” child is hidden inside the autistic one. And the supplement companies wouldn’t give up that lucrative market without a fight. They’d keep on advertising about how their “cure” was more effective than the mainstream.

  15. roomybonce December 2, 2009 at 23:12 #

    This is all very terrible. I wish I’d never lifted my head from that ‘Welcome to Amsterdam’ leaflet now.

  16. David21 December 3, 2009 at 20:54 #

    Sullivan, Tom Clarkson and Laszlo Magos were hired by the respondents (corrupt government beuorocrats/all healthcare officials/university research frauds/pharma/etc.) to prepare a report and testify that thimerosal cannot cause symptoms similar to autism. After reading the reports, the respondents canceled their testimony and destroyed the evidence that was produced. The special masters allowed this fraud to take place for all the world to see. The media just went along for the ride. The cats out of the bag and its not going back in.

    • Sullivan December 3, 2009 at 21:09 #

      David21,

      please. There are blogs that welcome the “corrupt government” language. The evidence was destroyed? Do you actually believe that?

      If you think the reports were destroyed, why are you asking me to find them? Stop wasting my time. I’d like to see what they had to say too. But I don’t want to spin my wheels in conspriacy theory land.

Trackbacks/Pingbacks

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  2. Autism Blog – Pass the Maalox: An AoA Thanksgiving Nightmare … | My Autism Site | All About Autism - November 30, 2009

    [...] Continue reading here: Autism Blog – Pass the Maalox: An AoA Thanksgiving Nightmare … [...]

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