Archive | Orgs RSS feed for this section

What if you could prevent autism?

21 Sep

What if you could prevent autism?  What if there were a way that people could dramatically reduce the number of people born with autism? What if it took a concerted effort on the part of everyone to make it happen?  Should we do it?  Would people complain?

Would we respect the lessons of  the past if it had already happened?

Well, it may have already happened.  “May” as in it requires correlating one set of trends with California DDS numbers on Autism.  We all know how dangerous that can be.  CDDS data are not epidemological.  They don’t tell you how many people in California have autism, they tell you how many people in California are getting services under autism.  People who forgot the importance of that distinction have found themselves promoting an epidemic that didn’t happen. 

With that lesson in mind, let’s look at some CDDS data.  Let’s look at the number of clients with autism by birth year.  Further, let’s look at these data as they looked in 1986.  That is pre “epidemic”.  Pre DSM-IV.  That is before schools added autism as a separate category. 

  CDDS autism clients by birth year as recorded in 1986The data show something I didn’t expect: a drop in the number of autism clients.  Not just the noise that gets those promoting the epidemic to say, “look from one quarter to the next we see a drop”.  Nope, this looks like it could be the real deal, that elusive goal of those claiming an epidemic.  It happened in the 1970’s. 

Keep in mind that these data are from 1986.  So the drop in numbers in the 1980’s is because those people hadn’t been identified yet.  It isn’t “real”.

Also, keep in mind that these are raw numbers.  No attempt to normalize into a rate (individuals with autism per 1,000, say) has been made.  California went through a notable population increase over this time.  So, any drop in rate estimated (from these non-epidemological data) would be even greater.

Given this great amount of limitations, take a look at this graph.  These are the autism clients by birth year as reported in 1986.  The data are noisy, but I see a big plateau for kids born in the 1960s with about 100 clients per birth year followed by a second plateau in the 1970’s at about 75 clients per birth year.

That is an indication that there may have been  a roughly 25% drop from one decade to the next in the number of people with autism.   What happened?

Rubella prevalence in the USWell, since I recently posted about the dangers of only digging deep enough to support your own pet theory (and that is good advice), I’ll put this forward as a “Medical Hypothesis”.  Consider this: the Rubella vaccine was licensed in the U.S.  in 1969.  What happened before that?  There was a Rubella epidemic in the 60’s.  Lot’s of kids were born with CRS, Congentital Rubella Syndrome: a known cause of autism.

What if the Rubella vaccine is reducing the number of kids born with autism?  Wouldn’t that be a good thing that should catch the attention of the “autism community”?  It is a little strange that one would have to use this route. Keeping Rubella at bay results in a lot fewer deaths, including the unborn.  Also, fewer would become deaf, fewer would have congenital heart defects.

From the CDC:

The greatest danger from rubella is to unborn babies. If a woman gets rubella in the early months of her pregnancy, there is an 80% chance that her baby will be born deaf or blind, with a damaged heart or small brain, or mentally retarded. This is called Congenital Rubella Syndrome, or CRS. Miscarriages are also common among women who get rubella while they are pregnant.

I would have thought that would be enough to get the point across: Rubella is something to prevent.  Perhaps the vaccine is a good thing?  Perhaps it is working?  I don’t think there is any “perhaphs” about it.  Overall, preventing Rubella is a great thing.  But some people seem to want to deny that vaccines even work.

Take a very rough estimate.  Assume from these data that 25 people a year in California alone have had autism prevented by the Rubella vaccine.  From 1970 to 2007, that works out to 675 people.  And that is just a secondary benefit.

Maybe by calling the Rubella vaccine “preventing autism” it will catch the eye of those who have somehow forgotton how bad this disease is.

The Wizard Of Oprah

21 Sep

Hey, it’s Thursday evening. Why don’t we stop by and see what the cat dragged in over at Rescue Host. Holy Vaccinations Batman! It’s more autism epidemic gibberish! The current installment comes to us from Kelli Ann Davis, who writes:

I knew the day was coming. With numbers like 1 in 150 children and 1 in 94 boys, “it” was bound to happen.

Her “it” apparently refers to the recent appearances of some fellow believers on daytime television. Davis goes on to share some apparent feelings of vindication:

I must of recited “the-numbers-are-getting-larger-and-our-voices-are-getting-louder” mantra at least a bazillion times over the last 5 years, cuz that’s how many meetings it feels like I’ve been in. but it never seemed to resonate.

There’s a good reason it probably didn’t seem to, for Kelli Ann, and doesn’t resonate in general. It’s because there isn’t any data that shows that “the-numbers” are actually getting larger. There is no question that there are indeed many more people being diagnosed as “on the autism spectrum”. But the thing is, the very definition of what professionals say autism is, changed dramatically in the not too distant past – even the conceptualization of autism as a spectrum of disorders is relatively recent development.

I think there’s a reasonable explanation for many of the “vaccines dunnit” voices getting louder. I’ve noticed a similar phenomenon in my own household, and I’m even guilty of it myself from time to time. Sometimes people craving attention (or just needing to be listened to) get louder and louder. Do four or five little children always calmly discuss who should get to go first in a game? Do they always rationally reason with each other about who should have the biggest piece of cake? What about children competing for the attention of a parent? Do they always stop, raise their hands, and quietly wait their turn? My opinion is that it’s often natural to shout. Shouting doesn’t automatically make one incorrect in their assertions, but it doesn’t make one correct either. It’s just shouting.

The difference here is that while shouting like children may garner attention, it does not change scientific reality. It just doesn’t matter if there are a million voices reciting the mantras of a flat earth, an autism ‘epidemic’, or flying saucers. No quantity of repetitive nonsense will construct any assertion’s truth. Without evidence that it is true, a failed hypothesis is doomed to the clutches of a handful of village idiots – and probably inevitably, a few celebrities too.

What does Kelli Ann have for us to demonstrate that “the-numbers-are-getting- larger”? Will it be daytime TV demagoguery?

Okay. So now “it” has arrived….in full Oprah force…..and I’m anxious to see if the “powers that be” FINALLY get “it.”

Ah, the “Appeal to Oprah”. Extremely similar to a simple appeal to popularity, but garnished with a household name that’s guaranteed to stir emotion and draw both media, and popular attention.

Kelli Ann might as well just write:

“Cuz everyone knows, “if you seen ’em on Oprah, they must be right”.

Should the “powers that be” Kelli Ann refers to, whomever or whatever that means, be worried if they don’t “FINALLY get it”? Only if they pay attention to that TV personality behind the curtain. Let’s hope they aren’t fooled into asking for a brain, heart, courage, or a trip home, and instead, ask to see everyone’s data.

Conflicts of Interest: Real and Imagined

14 Sep

One of the favorite refrains of the mercury militia is that the mountains of scientific findings that undermine the thimerosal/vaccines and autism hypothesis are all fatally flawed by conflicts of interest with the pharmaceutical industry.

The National Autism Association is particularly aggressive with this canard. The organization smeared a recent study, which found no link between RhoGam and autism, as the “Best Science Drug Company Money Can Buy”

“This study is just another example of the pharmaceutical industry’s corruption of research to suit its own purposes,” according to National Autism Association president and parent Wendy Fournier. “They back the study designs that give the desired results of no harm.”

In an Orwellian defense of discredited researcher Dr. Andrew Wakefield, NAA board member Scott Bono stated:

“Implicating the safety of vaccines such as MMR isn’t acceptable to drug companies or government officials who want to protect the vaccine program itself at the cost of the health of children.”

The NAA conflict of interest smear campaign extended to the media during the recent Autism Omnibus trial when the organization was faced with a barrage of media reports reflecting the scientific consensus that there is no link between autism and thimerosal and/or vaccines. Dr. Nancy Snyderman of NBC News became enemy #1 when she suggested that financial gain was a motive for many of these lawsuits. NAA claimed she was acting as a shill for the pharmaceutical industry because of her long ago previous employment with Johnson and Johnson.

According to the NAA, even the government is under the influence of Big Pharma. In this NAA press release, Dr. Jay Lieberman, who presented safety data on thimerosal at a CDC meeting, is accused of “white washing” the data because of his work with various pharmaceutical companies.

“Dr. Lieberman has been a consultant to Merck, GlaxoSmithKline, and Sanofi-Pasteur and is on the speakers’ bureau for all three vaccine-makers, who have used, and currently use, thimerosal in their products. “We have been very concerned about Dr. Lieberman’s conflicts of interest,” commented Executive Director Rita Shreffler of NAA. Shreffler says that NAA requested that a counterpoint speaker without ties to drug companies be allowed to present current, peer-reviewed toxicological data and the request was denied. “ To leave this presentation in the hands of those who have profited from, and continue to use thimerosal in some of their products is consistent with the CDC’s history of concealing the consequences of injecting mercury into humans,” said Shreffler.”

Obviously, the NAA wants us to believe that conflict of interest is a driving force that prevents the public from learning “the truth” about thimerosal/vaccines and autism.

To extend their scenario to its logical conclusion means that pharmaceutical and academic scientists actively suppress or pervert relevant data in exchange for financial gain. The American Academy of Pediatrics is willing to harm the very population they serve in exchange for complimentary travel, meals and baubles. Government employees are forbidden to reveal “the truth” because political systems are corrupted and silenced by the pharmaceutical lobby. Media outlets throughout the world suppress a Pulitzer Prize worthy story in exchange for pharmaceutical advertising revenue. All told, hundreds of thousands of people are complicit and willing to endanger their families, friends and the public’s health in exchange for professional remuneration, campaign donations and advertising revenue.

Collectively, these accusations are absurd. But individually, they can help plant seeds of doubt in the uninformed or casual observer and obscure the overwhelming scientific evidence that undermines the thimerosal/vaccine hypothesis. This strategy is also effective as it posits the NAA as a referee of professional ethics. However, in truth the NAA is riddled with very real rather than imagined conflicts of interest.

Meet the NAA Litigants

Several NAA Board members, Rita Cave Shreffler, Claire Bothwell, Laura and Scott Bono, Rosemary Dubrowsky, Lori McIlwain, and Lyn Redwood are or were litigants in vaccine cases. Ms. Redwood is/was also suing Georgia Power claiming that the mercury they emitted to generate power contributed to their child’s autism. Dr. Jeffrey Bradstreet, the organization’s, medical advisor, witch DAN! doctor, resident exorcist, and would-be expert witness also has claims before the vaccine court.

The organization’s board members have fanned out to push their thimerosal/vaccine agenda to government and scientific organizations. They have testified on Capitol Hill, planned and participated in federal research meetings, and served as advisors for federally awarded grants. All the while these people are suing the federal government and pharmaceutical companies. Their lawsuits represent a clear conflict of interest where the policies they advocate have bearing on their lawsuits. This certainly does not pass the sniff test. Most taxpayers would be angry to learn that their government is in effect helping them in their lawsuits against the federal government. Although it is extremely unlikely that they will ever prevail, their advocacy risks sidetracking productive research in favor of chasing after evidence for a lawsuit.

Jeffrey Bradstreet Addresses the IACC

The Interagency Autism Coordinating Committee (IACC) directs federal funding decisions among the various federal agencies that have interest in autism. Top brass and scientists attend IACC meetings. Presenters at IACC meetings are high level government agency heads or accomplished scientists. However, in November 2006, Jeffrey Bradstreet was on the IACC agenda giving a talk entitled, “The Role of Environmental Factors in the Pathogenesis of Autism:Phenotypes, Lab Markers, Clinical Interventions and Suggested Areas for Research”

The talk is a tour-de-force of junk science, skewed findings, lies, and damn lies. Every crappy paper ever smuggled into a medical journal on the imaginary association of thimerosal to autism is presented. And of course, at the end, Bradstreet has the audacity to suggest that NIH prioritize funding into biomarkers (read provoked urine tests for mercury) environmental toxins (read thimerosal) and DAN! Treatments (read chelation, HBOT, methyl-B12). He further suggests that this junk science be given program names within NIH and incorporated into existing Autism Centers of Excellence

Now, I would bet that the IACC members did their best to stifle laughter and not roll their eyes during his talk, but I’m not laughing. As someone concerned about autism, I’m brought to meltdown that Jeff Bradstreet, vaccine litigant and quack, was given a platform at the central seat of power in the U.S. for autism research funding. Why is the federal government encouraging a litigious fringe element? One has to wonder if the feds are aware of these conflicts.

Laura Bono and Lyn Redwood Plan IOM Meeting

In April, the prestigious Institute of Medicine held a scientific workshop Autism and the Environment. Laura Bono and Lyn Redwood were appointed to the planning committee for this meeting along with others in the mercury camp. Ms. Bono was given the floor to open the meeting where she excoriated the CDC for imagined failures and demanded that the federal government, “Grant money only to genetic vulnerability studies that have a clear environmental hypothesis.”

How many litigants suing the federal government are given the opportunity to infleunce federal research dollars at a very high level scientific meeting? Most tax payers would find this arrangement perverse and question the appointment of people with such obvious conflicts of interest. Do you think Ms. Bono or Redwood revealed their conflicts to the IOM?

Ironically, as Ms. Bono issued her demand that genomics research be halted, a seminal genomics paper was published which found that genetic copy number variations account for a significant portion of autism. This paper was the basis for yet another seminal paper which advanced a new and compelling unified theory of sporadic and inherited autism.

If officials at the NIH were to heed Ms. Bono’s self-interested and uninformed diatribe, science would be losing out on major discoveries into the causes of autism. Ms. Bono is a marketing professional with absolutely no understanding of medical research. She has no business at such a meeting and it’s more than time that the NAA is left out in the cold. It is shameful that federal officials have given this litigous group a seat at such an infleuntial table.

Lyn Redwood Decides Funding for Federal Autism Grants

Speaking of seats at the table, Lyn Redwood was recently named to an advisory panel that will direct $7.5 million in funding for autism research through the U.S. Department of Defense (DoD). This panel will be responsible for selecting grants that will be funded. The NAA press release about the DoD autism program states, ”The DoD reached out to stakeholders in the autism community in an effort to identify under funded areas of investigation and solicit feedback regarding the most promising areas of research.”

It is extremely troubling that the DoD reached out to a litigant suing the federal government and put them in a position to select federally funded research studies that have direct bearing on her lawsuit.

The overwhelming scientific data does not support any association between autism and thimerosal. Nonetheless, the NAA and like-minded organizations are working to fund research that will force a link. As you can imagine, the “scientists” who support the thimerosal/autism hypothesis are on the extreme fringe of research. They cannot meet the scientific rigor required for NIH funding and so they are desperate for other funding sources. Isn’t it convenient that Ms. Redwood became a panel member overseeing $7.5 million in autism research funding?

The DoD advisory panel conflict of interest policy clearly states that panel members are to divulge any and all conflicts of interest and recuse themselves from the grant selections or from the panel entirely.

Someone contacted the DoD about Ms. Redwood’s appointment as her involvement in litigation is an obvious conflict of interest. The news seemed to come as something of a surprise. A DoD representative responded that:

“The CDMRP take matters surrounding Conflicts of Interest (COI) very seriously and have had COI policies in place since the inception of our programs in 1992. As in other instances of potential COI as noted in our policy, the CDMRP will ensure that members of our 2007 Autism Spectrum Disorder Research Program Integration Panel (IP) are not claimants against the government before they participate in the review of proposals containing vaccine-related research. Our COI policy is attached. As you’ll note, IP members are expressly told that they “… will avoid any actions that might give the appearance that a conflict of interest exists or could reasonably be viewed as affecting objectivity in proposal review.” This means that IP members must either recuse themselves from reviews for which they have a COI or remove themselves from the panel altogether. We will ensure that this happens, and maintain the highest level of ethical accountability for our scientific processes, as the CDMRP has been doing for many years.”

So once again, it seems an NAA board member failed to disclose a clear and concrete conflict of interest that should have precluded them from ever becoming a part of the DoD Autism panel.

You’d Think I Was Making All This Up

When I was younger, I was accussed of having an active imagination. In fact, I dreamed an entire television show while staring at a snow globe. But this is not fiction. It’s time the federal government put the mercury militia to the curb and drive off. If you agree, I suggest contacting IACC member agencies—especially the National Institute of Mental Health which oversees the IACC—and the DOD Autism Program to express your displeasure.

It’s time that other voices within the community be heard. Voices that are free of conflicts of interest.

Actos – The New Fad

14 Sep

In the world of autism quackery, I’m of the growing opinion that the ‘doctors’ who play about with the drugs they experiment with on autistic kids sometimes sit around in a big club somewhere one-upping each other:

Chelation? Pfft – thats nothing. I give all my kids IV Chelation…..Oh yeah, well, I give all _my_ kids IV Chelation of garlic and vinegar….[an impressed rumble goes around the table]….thats nothing – I give my kids HBOT…..Really? HBOT? Well, I give my macaques, I mean, kids _Lupron_….

And there it rested for awhile. That is until a new kid on the block came long. Actos. What the hell is Actos? Its a drug used to treat Type 2 Diabetes. Why’s it being used to experiment on autistic kids? Well, the DAN! party line is that autism is or causes or whatever neuroinflammation. Actos reduces inflammation.

In a Newsday story DAN! doctor, Marvin Boris tells how he uses Actos all the time and in fact has co-authored a paper on its use:

Discussion and evaluation: In a small cohort of autistic children, daily treatment with 30 or 60 mg p.o. pioglitazone for 3–4 months induced apparent clinical improvement without adverse events. There were no adverse effects noted and behavioral measurements revealed a significant decrease in 4 out of 5 subcategories (irritability, lethargy, stereotypy, and hyperactivity). Improved behaviors were inversely correlated with patient age, indicating stronger effects on the younger patients.

Conclusion: Pioglitazone should be considered for further testing of therapeutic potential in autistic patients.

Happy days right?

Well of _course_ not. Would I be blogging about it if it was?

First problem I thought of was the discrepancy between sample size (25) and conclusion. At _best_ I would think of this as a pilot study.

The second issue was the utter lack of clarification regarding Actos and what exact risks were spelled out to the patients or their guardians. Actos is pretty heavy stuff.

Last week Actos received a “black box warning” from the U.S. Food and Drug Administration, the agency’s strongest level of caution. Actos, and a similar diabetes drug, Avandia, can increase the risk of heart failure, the FDA warned.

A black box warning means that the drug in question has a large black box drawn the text of the warning just to make it perfectly clear what the issues are. The warning confirms the Newsday story:

ACTOS is not for everyone. Certain patients with heart failure should not start taking ACTOS. ACTOS can cause or worsen congestive heart failure.

And whilst the study _claims_ Actos has a good safety record, what it neglects to mention is that:

Its safety in….people under 18 is not established.

So here we have a situation wherein a heavy duty drug is being used in a very off-label way, on a population it has no safety record for and which carries a black box FDA warning regarding its side effects.

Now, maybe its just me but two things strike me almost immediately about all this.

Firstly, call me silly and old fashioned, but I would much rather have an autistic kid then take a chance on having a dead kid. But maybe thats just me.

Secondly, all these parents who scream blue murder about the evil Big Pharma and complain bitterly about the safety records of thiomersal are apparently more than happy to fall into the loving embrace of this medication, made by Big Pharma and with no safety record at all.

My guess? Dr Boris wins at the DAN! bragging contest this year.

Why Aren’t You “Scared To Death”?

13 Sep

Do you miss Dan Olmsted’s writing? He now apparently showcases his version of scientific brilliance over at Rescue Host.

Recently, he tried to pass off the Flu shots and Chinese mercury hypothesis (which I thought was David Kirby’s, but I guess I was wrong) without much more than unfounded speculation and belief.

California, of course, is ground zero as we watch autism rates keep rising — even after mercury was “removed” from childhood vaccines starting in 1999 (the situation is much more complicated than that, since more and more pregnant women and younger and younger kids are getting mercury-preserved flu shots). So if you believe as I do that autism is fundamentally an environmental illness that whacks a subgroup of susceptible kids, mercury from China — or anyplace else — is every bit as important as mercury from vaccines.

I asked him the following in the comments:

If you wouldn’t mind Mr. Olmsted, take a look at a graph of the 3-5 year-old autism caseload cohort for the past 5 years.

Such a graph would include children born at the starting point of the “removal” in 1999 you mentioned. What do you see? Does the trend look linear to you?

Do you really believe there is combined flu shot uptake and airborne mercury data that would exactly and inversely match (in dose and effect, if any) the reduction the use of thimerosal in childhood vaccines in order to produce a trendline with an R-squared value of .9954 for this time period?

You can view such a graph here.

To which he replied:

An “R-squared value of .9954” is way beyond my non-scientific expertise. All I can say is that thimerosal use has actually been increasing in by far the most vulnerable group — pregnant women — and that at least some studies suggest that greater pollution directly correlates with a greater risk of autism. If the CDC had recalled all thimerosal-containing vaccines in 1999, we’d have a genuine “natural experiment.” But we don’t. Nor will the government study autism rates in never-vaccinated kids; the survey by Generation Rescue found ominous correlations between vaccines and NDs including autism, but it’s been widely ignored.

The survey by Generation Rescue? Right. Did he just make up that part about thimerosal use increasing in pregnant women? It kind of looked like it to me, so I asked and commented as follows:

What evidence do you have that thimerosal use actually increased in pregnant women for the period immediately following the “removal” of thimerosal from childhood vaccinations? (required to make your hypothesis work)

The majority of childhood vaccines were thimerosal-free or contain only trace amounts by 2002 (more on that below). Here’s flu shot uptake estimates for pregnant women for the three years that follow:

2002 – 12.4±3.9 %
2003 – 12.8±4.4 %
2004 – 12.9±5.0 %

Source

Note: there is an increase in the estimate for 2005, but children born in 2005 and later are not old enough to be reflected in the 3-5 year-old California autism caseload cohort yet. Additionally, estimates for 2006 were back down to 12.9 percent.

Source

Mark Blaxill and JB Handley showed up in the comments following that, and Olmsted apparently did not reply further. So the question of where Dan Olmsted might have found any data to make his Flu shots and Chinese mercury hypothesis plausible, will have to remain unanswered for now. But, while we’re on the subject of data-free gibberish, have a look at a piece of something posted by Dan Olmsted at Rescue Host on September 11th.

At some point, common sense has to prevail. For instance, let’s stipulate that better diagnosis accounts for a gargantuan 36 times more cases of bipolar disorder among kids over the past 10 years. That still would mean that the condition quadrupled in a decade — suspiciously, the same decade that autism, asthma, ADD, ADHD etc. soared out of sight. The deniers have to explain away every digit of that 40-fold number, because even a “mere” fourfold increase in the real incidence would be deeply disturbing. How can anyone be certain that one-tenth of that 40-fold increase isn’t actually real? And if they can’t be certain, why aren’t they scared to death?

Emphasis mine.

An appeal to “common sense” is a sure sign that what follows is probably not data that supports his hypothesis. Is common sense really the best way to arrive at correct answers about any subject for anyone, regardless of their background? What do statements like, “An ‘R-squared value of .9954’ is way beyond my non-scientific expertise”, tell us about the context to which Mr. Olmsted’s “common sense” might be reliably applied? Is autism epidemiology likely to be anywhere near Olmsted’s knowledge and expertise?

Sometimes common sense seems like a good way to operate, but the reality is that many things in science have quite complex answers. It’s also the case that science does not have all the answers (nor does it claim to). None of this will apparently stop Mr. Olmsted from forging ahead with assertion and anecdote in the rest of his post of course.

Did you catch this part of that paragraph above?

“…suspiciously, the same decade that autism, asthma, ADD, ADHD etc. soared out of sight.”

Did you see any real data or science whatsoever that actual autism prevalence “soared out of sight” in the past ten years? Me neither. So here you go any “Flu shot and Chinese mercury” proponents, now is your chance to post that real data or science in the comments – really, Mr. Olmsted needs your help if he’s to avoid the inevitable “You’ve got nothing!”. Either that, or get him a new hypothesis to work with (something with corroborative data preferred).

As for Mr. Olmsted’s final question in that paragraph, I’d like to answer it from one perspective.

We can’t be absolutely sure that there hasn’t been some real increase in autism prevalence, there might have been. To conclude that there has been a real increase in autism prevalence wouldn’t require much more than good data that shows it’s actually true. However, to conclude that there has been a real increase without supporting scientific evidence, but based on “stories”, is unscientific, if not a bit silly.

I can’t be absolutely 100% certain that an alien abduction has never occurred, but this lack of certainty does not translate to “therefore alien abductions are real”. I can’t be absolutely 100% certain that bigfoot doesn’t exist either, but again, that lack of certainty does not translate to “bigfoot is real”. I don’t live in fear of being abducted by aliens or encountering a hairy giant biped while on a hike with the kids, despite an abundance of “stories” about these things. I’m also not “scared to death” that there could indeed be an increase in the actual prevalence of autism. It is a possibility, but I have seen no evidence of it’s truth. I do see an increase in storytelling though.

JB Handley’s Emerging Hypothesis

9 Sep

The Handley’s are now proud parents to a third child. Many congratulations to them. I hope their daughter gives them as much pride and happiness as my two have given me over the years.

Of course, for JB, its all about the autism. And so, he details the steps the family took to ‘ensure’ this third child wasn’t autistic. Its, um, interesting reading.

First Brad reminisces about whats on the GR site:

It’s probably worth taking a quick step back. The Generation Rescue website spells out pretty accurately how we feel about the cause of
autism:

We believe these neurological disorders (“NDs”) are environmental illnesses caused by an overload of heavy metals, live viruses, and
bacteria. Proper treatment of our children, known as “biomedical intervention”, is leading to recovery for thousands.

Yeah, you do _now_ – it used to be:

It’s nothing more than mercury poisoning

And whilst Brad was happy to carry this simple message to the TV masses, he’s seemingly less happy to go back on and say, well no, I was wrong actually. Its in fact ‘overload of heavy metals, live viruses, and bacteria’. And as for ‘leading to recovery for thousands’…heh yeah, whatever.

But anyway, back to the Emerging Hypothesis of preventing autism. What has JB Handley come up with?

we began to develop a plan to prepare for life before and after birth that we believed would reduce the chances for another autistic child.

And what does this plan entail?

Early Preparation for Mom (prior to conception):

– Switching to a gluten/casein free diet
– Eating organic foods and avoiding all artificial colors, flavors, and preservatives
– Limiting sugar
– Focusing on gut health through a combination of anti-fungal treatment, beneficial bacteria re-population, and digestive enzymes
– Detoxifying the body through a combination of chelation and natural detoxification techniques like FIR sauna, NDF Plus, Zeolites, etc.
– Adding a pre-natal vitamin and B-12

During pregnancy:

– Maintaining all dietary approaches listed above
– Avoiding all vaccines
– Avoiding any environmental risks like lead paint, home construction, cleaners and solvents, chemicals, etc.
– Avoiding antibiotics except in life-or-death situations
– Avoiding x-rays and sonograms, unless high-risk birth issues exist
– Continuing supplementation of pre-natal vitamins, probiotics, digestive enzymes, and B-12
– Proper supplementation of mom’s methylation cycle based on genetics

After birth:

– Maintaining all dietary approaches and supplements listed above while breastfeeding
– Holding off on introducing solid-foods until at least 6 months
– Avoiding antibiotics for breastfeeding mom and baby except in life-or-death situations
– Avoiding any environmental risks like lead paint, home construction, cleaners and solvents, chemicals, etc.
– Supplementing baby with infant-safe probiotics
– Avoiding all vaccines for at least the first 2 years of life, and then taking extraordinary caution
– At the right time (typically 6 months or older), adding proper methylation cycle support
– At the right time, proper supplementation of Omega3-6-9
– Providing natural detoxification through things like Epsom salt baths

So mum has to go through an extremely rigorous program. What does dad have to do?

Nothing. Nada. Zip. Fuck all.

Children are, it seems, conceived solely by the female and thus the male’s biology plays no part. Or maybe JB just couldn’t stomach the thought that men’s sperm might play a role.

OK now, back on real street, lets look at a few things.

Firstly, this child is a third born female. Sibling risk of recurrence for autism with the previous birth of any child with autism is thought to be about 4.5% (the numbers are higher for families with a firstborn female with autism or more than one child with autism). That’s right, about 4.5%. That means that there is an approximately 95.5% chance, based on the available science, that a third child born into a family with one autistic child who is not a firstborn male, will not be autistic. Let’s say that again – a 95.5 % chance for non-autistic (maybe even higher if the child is female). From a purely statistical perspective, that’s a very high probability for a non-autistic child. (Source).

If this daughter _doesn’t_ end up being autistic, what do you think is more likely to be the reason? The +95% chance it wouldn’t have happened anyway? Or JB’s course of mummy purification?

Leave a message for Andrew Wakefield

9 Sep

DAN/ARI are asking people to leave messages for Andrew Wakefield. Below is mine:

Now that the scientific evidence as presented by Stephen Bustin at the OAP has finally displayed to the world how utterly wrong you are about measles in the guts of autistic kids, when do you plan to issue an apology to all the children you and your colleagues needlessly scoped?

When do you plan to issue an apology to all the parents who believed you and who subject their children to outlandish autism ‘treatments’ that have resulted in both death and hospitalisation?

When do you plan to offer an apology to all the people who are now living in a UK where herd immunity teeters on a knife edge and the numbers of people hospitalised by measles grows every year?

You have been proven scientifically wrong ‘Dr’ Wakefield. Are you also without morals too?

I urge you to go an leave yours too and pass on the link to people you know:

Go here and click the link at the top of the page.

The Myth of Recovery

1 Sep

Back in August of last year I wrote a blog entry about the Generation Rescue ‘recovery’ stories and how true recovery actually accounted for 5% of the stories on their website which I upgraded in May of this year when they redesigned their website. Their true recovery figure now stands at 7%. I even recounted how I sent my own daughters details to them under an assumed name using the exact truth about her state and condition which they duly published.

I was interested to come across some more fascinating dialogue between members of the Yahoo ABMD group – a group which believe mercury caused their kids autism and Biomed can help them. This is one of the oldest and most well regarded (amongst the mercury militia anyway) Yahoo groups.

The conversation began thusly:

From: Eva family
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:29 AM

the other thing that troubles me about all the “autism doctors” is that
no one seems to do any studies based on their patients. Some doctors
must have dozens of patients but there seems to be no published work
correlating their levels of minerals, reactions to diets, success of
treatments

…………

But in general J McC, Yasko etc, Buttar, the zeolite-people earn lots of
money and publish nothing except opinions………..followed by
anecdotal acclaim from those for whom they work and silent despair from
those for whom they don’t.

Being an experienced reader of the material on these groups, I silently commiserated with this poster as I waited for the inevitable flame fest. But it never happened. Here are some of th responses this post received from other ABMD members:

From: Laura K. Fischer
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 4:34 PM

Sally, this has always been a concern of mine also, I honestly don’t know whether some of these alternative doctors have any better of a percentage record in improvements then say some of the better mainstream neurologists prescribing meds or even in comparison to kids who only do therapy and educational intervention. Although I recognize that part of my skepticism probably stems from the fact that most of the kids I personally know who have done a lot of biomedical treatment (those in my local community) don’t seem to have improved any more rapidly than those who did not, there are a couple who are even worse off. There is no clear advantage that I have witnessed with my own eyes and it may be that it is because there is a tendency for many of these families to have used a couple of the same DAN doctors in this region, I recognize that this could be a contributor. But I do share your concern with this….Laura

From: Lawrence G. Leichtman, MD
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 6:40 PM

I have followed about 100 children with autism doing biomed. I have never seen a single “recovered” child if by recovered you mean normal though 8 of
the children were claimed to be recovered by their DAN doctors. I have wseen about 10-15% improved kids, some slightly and 10% of kids who were
actually worse from biomed. Of my patients using Yasko prescribed treatment alone I have seen 0 improvment out of 12 patients. I still don’t know what
works or why and this is after 10 years of doing this.

The response from Leichtman is a bombshell. If you do not recall the name, he is the doctor who was quoted in Dan Olmsted’s Age of Autism pieces as treating Amish kids (who never have autism – heh). According to his (anecdotal) opinion he has never seen a recovered child out of the 100 he has seen who have been doing biomed, even amongst those whose DAN! claimed they were recovered. Fascinating.

From: Gina Mouser
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Mon, Aug 27, 2007 at 7:45 PM

We were seeing a very famous DAN dr. who told us that of all the 5000 plus
patients that the DAN doctor was treating, my son was the ONLY one that is
not improving.

Go figure..

Gina

This shed’s some light on the way DAN! quacks falsely inflate their patients parents with hope or a ‘convincing’ explanation. Except, judging by the tone of this email, this mum isn’t convinced.

One of the responders went on to question why Dr Leichtman was a member of the ABMD board if he didn’t believe in biomed. He reiterated his position and confirmed his belief that DAN! docs either lie or are mistaken:

I have seen positive results 10 to 15 percent is still better than 0. I just don’t believe in the total recovery claims as several of my patients were claimed to be recovered by their DAN doctors but they weren’t.

The original poster chimed back in later….

In the UK in education we have something called “value added” — this is the amount that a school has done for a child over and above what might have been expected by simple development. I would like to autistic children measured and placed at a point on a graph as they come into a
doctor (this is already done as I understand it) and then measured again after set periods. Over time that would set baselines and it would be
possible to see which doctors/treatments were giving “value added”.

I don’t understand why no one is doing this. Surely anyone genuinely “recovering” children would be all over us with data, analysis etc — so
that their achievements could be recognised, replicated and they (the doctor) could receive universal praise.

Quite. A point some of us have been making for quite some time.

Then of course, someone finally did play the PharmaShill card at Dr leichtman:

From: Marisha Taylor
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Date: Tue, Aug 28, 2007 at 3:12 PM

I think the “confusion” is coming from you trying to turn the outcome of the study to what “you” want it to be. You & the pharmaceutical
guys would get along great -how much are they paying you on the side? Thank God you are having problems getting it published – there is no
more space for flawed studies.

The most fascinating thing about this post was the speed and weight of the responses telling her to shut up. Not what I would be expecting at all.

As part of the responses Dr Leichtman dropped his second bombshell:

I don’t even understand what you are asking. Neurotypical is average for a child their age not with sensory issues, not with hyperactivity, not with behavioral disorders. I do not include those that I really don’t believe nor does my neurodevelopmentalist believe has autism despite coming in with that diagnosis. *I see plenty of children who come in with the diagnosis who don’t have it in the first place* so improvement or not may not be valid for their issues.

This was unbelievable stuff. Straight ‘from the horses mouth’ was the seconding of the opinions that a lot of us had held for years. That some ‘recovered’ kids were never really truly autistic to begin with. I would love to know if Leichtman ever saw the Berle’s.

Anyway, as I mentioned, when Leichtman was accused of being a Big Pharma shill, the entire group sprang to his defense, including Holly Bortfield, a well known mercury mom.

From: Holly Bortfeld
Reply-To: abmd@yahoogroups.com
To: abmd@yahoogroups.com
Cc: *******@aol.com
Date: Tue, Aug 28, 2007 at 3:24 PM

Wow, time to back off Marisha. Dr. L is a valued member of this list and you are out of line.

Bortfeld is a fascinating case. Later on in this discussion she says:

I know people who did only a few things and their kid is recovered and I know people who did EVERYTHING and their kid is still severe. While I do know some, they are very few in comparison, kids that are recovered. That sucks.

…………

I am thrilled for them, but my kid isn’t one of them (recovered) despite having the best of the DAN docs, virtually unlimited therapies and the “best” of everything, regardless of money, he’s still screwed up at 12 years old.

‘Screwed up’? Nice. This post was in response to the owner of the ABMD group’s post when she said:

I believe (and I’ am very cynical at this point) that most stories of “recovery” are the result of a misdiagnosis, or a mispresentation of
the facts for some financial gain.

Wow. Just….wow. These are incredible things for a ‘mercury militia’ group to be saying. If you only heard Gen Rescue etc you’d believe Brad’s oft-repeated claim of thousands of recovered kids. Its amazing to know that people of the same essential belief differ so wildly.

But back to Bortfeld’s screwed up non-recovered son. Her stance is peculiar given that, back in 2001, she was part of a discussion on the ABMD list during which she said:

Each time we deal with one of his medical problems, the features that gave him the autism label reduce. So in my mind, if we heal enough of his body, the autism dx won’t apply anymore. He went from severe (62 on the CARS) to mild (29 on the CARS) with diet and secretin. The last CARS they ran on him was a 22 so that technically doesn’t even qualify him for the autism label anymore (CARS is from 30-60) but I keep the label for services.

So which is true? That her son is ‘still screwed up’ and isn’t recovered? Or, back in 2001, that he doesn’t qualify for the autism label anymore? Interesting confirmation that Rescue Angels falsely hang on to diagnosis just to receive services as well.

I talked recently about denial. Is this discussion evidence of the rift in the mercury militia between those who have moved past most of their denial and those who can’t? Is it evidence that DAN! doctors know exactly how to play on the hopes and fears of these parents? I think so.

Rescue Post Retracts

29 Aug

The Rescue Post has seen sense and retracted its post that destroyed the confidentiality of children, so – as per my promise in my post – I’ve retracted my post which highlighted their irresponsible actions.

Acceptance not denial

22 Aug

Acceptance. It is a word that some use to describe their relationship with the reality of their children, or their own, autism. We accept the fact our daughter is autistic.

For people who claim to ‘fight autism’ this acceptance is a weak passivity. An act of giving in.

This, of course, is rubbish. Those who have accepted the reality of their own or their children’s autism know that the work starts right there. We do not attempt to carry on deluding ourselves and using quack treatments such as chelation etc as shields against the reality of who our kids really are.

Parents like Brad Handley of Generation Rescue claim at one point in time that:

“autism is a misdiagnosis for mercury poisoning…..The whole notion of autism is mythical. It didn’t exist before thimerosal in vaccines”

Source

and then later say:

The argument is being spun by focusing exclusively on a single ingredient used in vaccines, Thimerosal (which is made from mercury), while forgetting to mention a number of key points about the differences between the vaccine schedule of 20 years ago and today….Thimerosal is only one of the possible ways that the vaccine schedule could be the primary trigger behind the autism epidemic…

Source

are simply in denial. When their first belief is established to be untrue, they simply move on to another belief.

From the videos I posted a link to above, Brad is asked:

Q: This therapy (chelation) is it something he (Jamie) will be on the rest of his life?

Brad’s answer is:

A: Absolutely not. Its at maximum a two year process. Probably less.

As of next month, Jamie Handley will have been undergoing various treatments for three years. His story is not, as far as I can tell, listed anywhere as a ‘recovery’ story. He is still autistic.

Brad has made no effort to go back onto TV and explain this inconsistency. This is because he cannot. It is not explainable. I will be honest. Brad and I regularly exchange verbal barbs but I often feel sorry for the Handley’s. Because of their inability to accept the reality of their sons autism they have been unable to move on. They have instead – as I think is the case with a lot of the autism/vaccine parents – sublimated their failure to ‘cure/recover’ their kids in a proxy-fight with the ND’s, the CDC, the FDA – whatever.

I read a lot of blogs from the likes of Wade, Ginger, Kim Stagliano etc and whilst I often read about their anger and I often read about their love for their kids, I never ever read about them being happy. Do they love their kids? Of course they do. Do they enjoy their time with their autistic kids? I don’t know. I don’t think so.

There is a curious emphasis in a lot of these blog posts. Take Kim Stagliano’s most infamous blog entry – The Crappy Life of the Autism Mom – in which she says:

Recovering your kids doesn’t mean denying their value as people. To the contrary, it means we are willing to devote our lives, our savings, our sanity to their improved health, development and well being.

The jarring difference between stating that she is not denying their value and describing her life as their mum as crappy never occurs to her. It is also sad beyond belief that Stagliano feels that the measure of a persons value is the suffering of their parents.

Of course, the truth is that any decent parent will devote their lives, savings and sanity to their kids well being. That is not a situation that is the sole province of autism or even disability. Just parenting. However, I think that as well as lives, money and sanity, a parent should also invest respect and reality. Sublimating a continued tilting at the windmill of your child’s condition into an increasingly dirty and violent fight against a giant conspiracy is sad. Not sad in a sneering way but genuinely sad. It must be so miserable to be simply unable to accept the reality of the nature of your child.

This inability manifests itself in some strange ways. There have been a spate of articles fairly recently which examine the possibility that older parents are more likely to have autistic kids, or that autism might be due to a ‘corrupted’ (in the medical sense) gene. The outbursts these research papers have generated on EoH are amazing:

You forgot to mention that we’re damn old TESTOSTERONE-laden refrigerator mutant moms……………Here’s more from Autism Speaks funded research. So now the theory is it’s you damn old moms with your refrigerator mutant genes that causes autism. You are such horrible people. Tsk-tsk. Clearly, you aren’t feeling guilty enough, no matter how misplaced.

Any hypothesis which mentions or refers to parents is given equally short shrift. It doesn’t take much to work out why. Even when there is no hint of ‘blame’ (as in dear old Bettlehiem) to parents, any intimation that the genetic/physical make up of parents might have something to do with causes is pounced on and denounced in increasingly hysterical overtones.

Personally I don’t see the issue. Does it matter? No, not to me. But it seems to these parents that the idea that they might carry some responsibility for the fact their kids are autistic fills them with an utter horror. Even to the point that they have to delude themselves.

Take the cases of Erik Nanstiel’s daughter and John Best’s son. Here are two fathers who regularly sing the praises of their children’s doctors (the Geier’s and Andy Cutler respectively) and yet…

When we look back at everything we pay out of pocket… and for everything we pay as a co-pay… it’s several THOUSAND a year.

Why are we still doing biomed after six long years? Because we’ve seen our daughter go from failing-to-thrive to a pretty healthy kid. From a kid who couldn’t balance her copper and zinc… who had lead and mercury through the roof, with very little glutathione… who had constant diarrhea and wouldn’t sleep at night… and terrible eyesight…

to a kid with darn-near normal mineral levels, whose heavy metals have been more than half depleted, is thriving on a good nutritional program… and whose glutathione levels are now higher than daddy’s… is sleeping wonderfully through the night and has seen a 60% improvement in her eyeglass prescription.

She’s also nearly lost her tactile-defensiveness, loves attention (much more than before), stims a LOT less… is beginning to potty train and needs less “prompting” from us for life skills that she’s learning (like using silverware at meal time and dressing/undressing, etc.)

She is still considered low-functioning…

Like Brad and I, Erik and I have also had our fair share of verbal jousts but when I read this I want to weep. How can a man who so obviously adores his daughter fail to see that which is right in front of his face? They’ve been doing biomed for six years and his daughter is still low functioning (Erik’s words). The improvements he describes have little to no bearing on autism.

I waste no pity on John Best but once again, his denial is as plain as the autistic son in front of him:

I’ve done 55 rounds of chelation safely following the advice of Andy Cutler. My son keeps improving. I advise everyone that contacts me through GR to read what Cutler has to say and consider his protocol over what some DAN doc’s say. He has answered all of my questions at no cost and this chelation for a severely autistic child is working.

Whereas today, John made a post on EoH that stated:

In the time it took me to type my last reply, my son smeared feces all over himself and his room again. I’ve long since lost track of how many hundreds of times this has happened.

By the standards of Kim Stagliano – smearing (A Crappy Life remember) equals not cured. How exactly is the chelation working for John’s son? Or is it merely a panacea for the denial that ails his dad?

← Older Entries
Newer Entries →