Telegraph: ASD in the UK now 1 in 58

New fears over MMR link to autism
Telegraph
By Stephen Adams
Last Updated: 3:11pm BST 08/07/2007

Fresh fears over a possible link between the measles, mumps and rubella (MMR) vaccine and autism have been raised after a new study found that almost double the number of children could have the condition than previously thought.

Researchers at Cambridge University’s Autism Research Centre (ARC) have estimated that one in 58 children suffer from some form of the disorder, compared to previous estimates of about one in 100.

The figures mean up to 210,000 children under 16 across the UK could have some form of autism, the unpublished research by the ARC found.
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Two of the seven experts who took part in the study have now privately voiced concerns that the controversial MMR vaccine may be a factor in the emergence of autism among some children.

Dr Fiona Scott and Dr Carol Stott have reportedly said they think the jab, given to children between 12 and 15 months, could be responsible for growing numbers of children apparently exhibiting symptoms of the disorder. However, the other five, including team leader Professor Simon Baron-Cohen, rejected their view.

Autism is the term given to a wide range of development disorders that affects an individual’s ability to understand the world and communicate with others. It covers a "spectrum" ranging from severe cases of "classic" autism - which often renders a child unable to speak - to much milder Asperger’s syndrome, which can affect a person’s ability to socialise.

Until the early 1990s experts believed that only four or five people in 10,000 suffered from the condition. Since then studies have shown autism is much more common, with experts generally agreeing on the one in 100 figure.

Academics agree much of the apparent increase can be explained by the fact that more people are now aware of what autism is. But there is still a heated debate about whether or not autism is actually becoming more common in children.

Last year a study reported in the medical journal The Lancet put forward an estimate that one in 86 children suffered from some form of autism. The ARC’s paper, based on a study of 12,000 primary school children in Cambridgeshire between 2001 and 2004, raises the estimate significantly.

The results of the study, which was purely statistical and did not examine the possible medical causes of autism, so worried Professor Baron-Cohen that he contacted health officials in Cambridgeshire.

However, the professor - who is a first cousin of the comedian Sasha Baron-Cohen - stressed he did not believe the MMR vaccine was behind the apparent increase.

Professor Baron-Cohen said: "As for MMR, at this point one can conclude that evidence does not support the idea that the MMR causes autism."

He said he believed a better understanding of autism and environmental factors such as exposure to chemicals and hormones were more likely to be behind the recorded increase. Nonetheless, the research is bound to spark renewed doubts among concerned parents about the safety of the triple vaccine.

The percentage of children being given the jab fell dramatically after doubts were raised over its safety by Dr Andrew Wakefield, a gastroenterologist at the Royal Free Hospital in London. Vaccination rates have only just started to recover.

In 1998 Dr Wakefield co-authored a paper published in The Lancet which looked at bowel disease in 12 children with autism, and suggested a possible link with the MMR vaccine. Later he gave a press conference calling the safety of the vaccine into question and recommending children should be given the three inoculations separately.

Ten of the 13 academics who contributed towards the paper soon retracted its conclusions, but Dr Wakefield and two others have stuck by the 'interpretation’. Dr Wakefield is due before a General Medical Council hearing next week to answer a number of charges in relation to the 1998 study.

The new report has also triggered calls for the Government to do more to further the understanding of autism and help those with it.

Benet Middleton (OK), director of communications at the National Autistic Society, said: "There is an urgent need for a clear Government strategy for responding to autism.

"We need to have an accurate picture of how many people have autism, we need adequate services in place to support people with autism and we need those working with people with autism to have the right training.

"Current provision for those with the disability is deeply inadequate given the scale of the need. Autism is a lifelong disability and when an individual’s needs are not met the long term consequences both financially and for the individual’s well being are profound."

Ivan Corea, head of the Autism Awareness Campaign UK, said many autistic people were at the mercy of a "postcode lottery".

She said: "We are urging Gordon Brown to provide a world class education for all children with autism and Asperger’s Syndrome, to provide new specialist autism schools, even Special Needs Academies and autism units equipped with sensory rooms in mainstream primary and secondary schools."

A spokesman for the Health Protection Agency (HPA) today stressed the MMR vaccine was safe.

She said: "We have not seen this report, which has not been published yet and has not been peer reviewed, so we cannot comment on it. Every test that has tried to find a link between MMR and autism has not found one. MMR is a safe vaccine."

Autism: An Epidemic, Worse Than Polio Was in the 1950s

The University of New Mexico Center for Development & Disability and the city of Albuquerque are partnering to host the state's first town hall meeting on autism.

Mayor Martin Chavez will host the meeting at the Albuquerque Convention Center from 8 a.m.-1 p.m. Saturday, Aug. 11. The forum is open to the public.

The partnership behind this grassroots initiative is the first ever between the city and UNM, said Maryellen Missik-Tow, a development specialist at the CDD.

The mayor is inviting all leaders from New Mexico to this forum, including local, state and federal representatives, industry leaders, community advocates, educational institutions and parents.

Missik-Tow, who calls autism "an epidemic, worse than polio was in the 1950s," said she is particularly eager to have business leaders attend so they can learn about the impact of autistic children on employees, who might pay $25,000 to $30,000 out-of-pocket per year to provide treatment for their children. She also hopes to recruit corporate investment in a planned state-of-the-art Autism Center for Excellence.

"People are leaving our state because we have no services [for autistic children]," Missik-Tow said.

She's Mad As Hell and Not Taking It Any More

Kendra is a mom who apparently got sick and tired of the biased and illogical media coverage and shot back.

Her points were so good that I am posting the original article and her response.

I encourage the Valley Independent to be brave enough to publish it.

I encourage the Media to come to grips with the fact that people don't believe the medical community and the government claims that vaccines have no relationship to Autism, and by choosing to report those claims unchallenged, the public trust in them will ebb right along with their trust of PHARMA sponsored medicine.

[UPDATE: Kendra heard back from the author who is the father of a 16 year old with autism, and has softened a great deal toward him. She may update her remarks here.

This was part of a series. The latest installment, published today, indeed adds balance to the previous column. I had written to the columnist myself yesterday, and his response was, 'wait and see'.

To me, the most interesting part of his column today was this:

My wife was invited to attend a special luncheon held by National Association for Autism Research in Pittsburgh to kick off Walk Far for NAAR. About nine other parents of autistic children sat around the same table and naturally they began to discuss their children's condition. One by one, they expressed the same belief that the MMR shot caused their children to become autistic.

Even supporters of NAAR, who are the most anti autism/vaccine link group in existance, firmly believe that vaccines "caused" their own children's autism.

Stunning.

I saw an online poll a few weeks ago that 89% responded that they believed there was a link between vaccines and autism. So if everyone apparently believes this, even NAAR's own charity event goers, even the authors of articles that are criticized by parents who are actually turn out to be on the same "side" as they are, then what are we arguing about? Why are the authorities allowed to ignore the link?

When is someone going to stand up in public and say that the Emperor has no clothes???

I feel like I am living in the twilight zone.]

Report Addresses Autism Levels
By Chris Buckley
VALLEY INDEPENDENT
Tuesday, June 26, 2007

(Editor's note: This is the second part of a four-day series of informational stories about autism and profiles of people who are afflicted with the condition.)

The results of the study sent shockwaves through the medical community.

The Centers for Disease Control announced earlier this year that it had determined one in every 150 children was afflicted with autism or an autistic spectrum disorder.

But Dr. Nancy Minshew was not surprised by the results.

The findings did not indicate an increase in the number of people with autism, but an increased awareness that autistic children are living in our society, Minshew said.

"No, it's not an epidemic, it's an issue of how well a job we're doing diagnosing these kids," said Minshew, professor of psychiatry and neurology at the University of Pittsburgh.

"In Pittsburgh, we're doing a pretty good job. But get an hour out of Pittsburgh and we're doing a poor job."

Minshew has spent 22 years studying autism and is director of the National Institutes of Health Collaborative Program's Excellence in Autism at the University of Pittsburgh. She said university-based diagnoses are most effective in identifying autism.

Minshew said recent surveys found similar results to the CDC report. The community of Brick Township, N.J., concluded in 2001 that the rate was one in 150. A cluster of studies done from 2001 to 2005 found results ranging from one in 150 to one in 170. Autism related agencies agreed to use a figure of one in 166

The national numbers are based on two CDC surveys encompassing 22 states, including Pennsylvania.

The Autism Society of Pennsylvania estimates there are about 75,000 people statewide with some form of autism and about 4,000 in the Pittsburgh region.

Still, Minshew said the figure may be even more startling. She said the CDC study could not reach home-schooled children and those in private schools.

Most pediatricians are not trained to diagnose autism, Minshew said. Regional centers for diagnosing and treating autism are needed, she said.

Collecting information on the number of autistic individuals is also hampered because families are not open to discussing their children. Society tends to cut off ties with families with autistic children.

Minshew recalled one parent of an autistic child who noted, "We don't have friends anymore. The only friends we have are the people who have an autistic child. Our old friends cut away."

MMR a cause?

Whether mumps, measles and rubella vaccinations are a cause of autism, especially the spike in autism cases in the past 20 years, has been debated.

In the June 16, 2005, edition of "Rolling Stone" magazine, an article titled "Deadly Immunity," by Robert F. Kennedy Jr., theorized a link between thimerosal in inoculations and autism in children.

Thimerosal is an antiseptic and antifungal agent that has been used as a preservative in vaccines, immune globulin preparations, skin test antigens, anti-venoms, ophthalmic and nasal products, and tattoo inks.

The compound is being phased out of most childhood vaccinations. Packaging the vaccines in single-dose vials eliminates the need for bacteriostatics such as Thimerosol.

Dr. Andrew Wakefield, of the Royal Free and University College Medical School in London, was the lead author of a controversial 1998 research study, published in the Lancet, which reported bowel symptoms in a selected sample of 12 children with autistic spectrum disorders and other disabilities, and alleged a possible connection with MMR vaccination.

Although in the paper the authors stressed no causal connection had been proven, Wakefield called for suspension of the triple MMR vaccine, recommending instead that the three vaccines be administered with one-year gaps.

A controversy surrounding his findings occurred in 2004, when it was reported in The London Times that some children in the study were recruited by an attorney preparing a lawsuit against a vaccine manufacturer.

The interpretation of the possible connection to vaccination, but not the report itself, subsequently was retracted by 10 of the paper's 13 authors.

General Medical Council, the regulator of the medical profession in the United Kingdom, has since investigated the reports' claims and is preparing to conduct hearings.

Currently, the U.S Court of Federal Claims is conducting hearings on whether the vaccines caused autism. More than 4,800 families have filed claims alleging the link.

Parents of autistic children - especially those diagnosed from 1988 to 2000, when Thimerosol was used in the vaccines - believe a connection exists.

Matt Kadash was developing at the same rate as a normal infant, and was even ahead of the curve. He spoke words at 13 months, for example, his mother, Sandy Kadash recalled.

Then, suddenly, his development stopped. He stopped speaking. The Amity woman is sure she knows why.

"I blame it on the MMR shots," Kadash said.

Kelli Tencer, of California, also believes the MMR vaccination is the root of her son's autism. She saw a dramatic change after he received the vaccination at about 16 months.

"I believe there is a direct link," Tencer said. "My son was fine and developing normally until he had that first shot."

Minshew, though, said the connection is purely coincidental. She said children usually show signs of developmental regression consistent with autism from 12 and 22 months of age. MMR shots are routinely given during that period.

She challenged parents who still believe in the link to view videotapes of their child's first birthday to look for signs of early regression.

"They are not oriented to other people," Minshew said. "They do not get the idea of presents, cake, celebration - the interaction with other people."

Chris Buckley can be reached at cbuckley@tribweb.com or (724) 684-2642.

Chris,

Do you ever stop when you hear all this and let the bat of common sense come up aside your head?

Anyone that repeats the "just better diagnosis" mantra cannot live in a reality based world. The story seemed to be about the CDC released data of 1 in every 150 but seemed to leave out the biggest shock that the CDC's study found. The study surprised the CDC by showing that diagnoses nationwide was abysmal. The CDC announced that their study showed that parents concerns and fears were being downplayed, ignorned, and neglected on average of 1 1/2 years after they expressed grave concerns. Does that sound like better diagnosis. No, instead, it sounds like what many of us know, that over 90% of all Autism diagnosis are parent driven. If this is the case then it would not have changed over time. A parent 20 years ago would have demanded just as adamantly "what is wrong with my child" as parents are demanding now.

Autism is not a unique skin rash that could be easily mis-identified as another rash. It is not a subtle condition and the signs and symptoms not easily missed. Missing autism is sort of like missing a grand mal seizure. The majority of those diagnosed will never live independently. They will require constant care for the rest of their typical lifespan. Autism is so devastating, there is no way it was ever missed in the past. When high-funcitoning or Aspergers is mentioned, even most of these individuals, while they may be verbally adept, will not lead an independent life either. Only the lightest affected could possibly "slip through the cracks" and those are probably more the ADD/ADHD area than autism. The criteria required to be met for an autism diagnosis under the DSM IV code are devastating and must incompass a majority of the areas across the Autism spectrum.

These so-called experts quoted in stories such as yours would like the American public to believe that our personal and collective memories are faulty. That we all lived among these people in the same numbers as now and we simply cannot remember them, but they were always there.

Many say other diagnosis are now more properly labeled Autism and were just mis-labeled or misunderstood before. How do they explain every school in America that is going broke from the sheer numbers. How do they explain the 20 year tenured teachers that cannot fathom the explosion in Autism and have never seen the kids in the numbers they are seeing now. Tiny towns with "Autism" classrooms, that never had an autistic student in over 50 years. Tiny towns with classrooms of kids unable to function in typical classrooms, unable to learn in a typical manner, unable to pay attention, sit still, grasp basic concepts, etc. etc. It would not have mattered what these kids were 'labeled' in the past, the schools still would have had to accomodate them, no matter the name that was put to their disability. But we all know that was not the case. Schools lack the facilities, staff, and training to deal with the tsunami of affected children.

I grew up in a town of less than 1,000 people. In my 12 years of education I never knew one kid with autism, or anyone I can remember that would have come close to meeting the criteria. I knew one child a few years older than me who was mentally retarded. 1 child many years older who was blind, and one a few years younger who died of cancer. My same home town now has Autism classrooms bulging at the seams. After coaching there for five years, four former athletes have informed me they have children diagnosed with severe Autism. Including myself, the former coach, that gives us five children with autism from 47 different mothers. But here in Oregon the rate state-wide is 1 in every 98. Of course this does not include ADD/ADHD, nor does it include the huge numbers of children now with life-threatening food allergies, the 1 in 5 with asthma, the 5000% increase in kids with diabetes, arthritis, cancer, etc.

Those like Dr. Paul Offit, owner of a vaccine patent, like to attempt to scare the American public with threats that if autism or other serious immune system diseases are connected to vaccines that people will stop vaccinating their children and serious childhood diseases will return. Just talking about vaccines and Autism, he speculated could destroy the health of American children. UH, Hello. It seems Dr. Offit is a little out of touch with reality. He is assuming we have some gold standard of health in our children today that merits protection. Yet new studies just today from Offit's very hospital and designed and run by Harvard University say our children are sicker than in any generation. Perhaps Americans aren't buying it anymore. Parents see their children's classrooms with Medicine "cubbies" where nearly half of all student have regular medication including the devastating numbers of children on anti-psychots, risperdal, ritalin, and more. Children with ANA kits, inhalers, and insulin injection kits. When you look at the life-shortening devastating lifelong illnesses children are now suffering from it sure makes a week with the measles look like a picnic. If Dr. Offit was more of the same, protect the great health of American children, no thank you. If he is proud of the ranking of 37th in the world of infant mortality...no thank you.

I saw a mainstream media poll the other day in which 89% of respondents replied that they believed in a link between vaccines and autism. Maybe all of us parents aren't such fringe whackos after all. The pharmaceutical companies have proven their motivation with lies and falsifications of drug trials and Americans are rightfully sceptical of all their claims now.

Just like global warming, the debate is over. In fact, besides government denials, there never was a debate. Injecting mercury into childrens' bodies is criminal, no debate. Mercury is a known neurotoxin, no debate. Mercury causes neurological damage, especially in fetuses and children, no debate. Only in corporate America can there even be a debate over injecting babies with the 2nd most toxic substance on earth. There is no debate, only corporate greed and self-preserving denials. An Autism Mom said the other day, "Autism spilled on a school room floor is a toxic event, the schools are shut down, the hazmat team called in, young people decontaminated, health screenings are done, and a major long term clean-up occurs. But, inject mercury into an infant and it's called a well baby visit".

The medias refusal to use common sense, to ask the tough hard questions is only making them look as bad as the now professional liars, protecting their own collective butts. I don't know how you can even write this stuff anymore without laughing or crying, but you have to have lost all common sense to not question even the most basic tenets of the crap now being spewed forth by the self-protectionists. Can you even have two neurons left to rub together and not see the truth? Apparently not.

Kendra Pettengill

Roseburg, Oregon

Mother of a recovered child, formerly diagnosed with Autism

Dr. Stoller on His Autism Journey and the CDC

Stoller was a pediatrician that saw only two cases of autism in his first decade and a half of practice, and came to the realization with the problems with the CDC and vaccines around the same time as I did in 2004 when he was testifying before the Senate on another medical matter. He highlights the ridiculous position of the CDC:

If we were talking about children going blind read how obscene this would sound:

“The number of children diagnosed with blindness is rapidly increasing. According to a study from the Centers for Disease Control and Prevention, nearly one in every 150 U.S. children is blind. These numbers are startling and this disability is affecting more and more families. Twenty years ago blindness was a very rare case. Today blindness is becoming a frightening statistic in every community. April is Blindness Awareness Month and I encourage everyone to take this opportunity to learn more about this disability…”

It would be absurd to relate this information about blindness without giving any explanation about what was causing it. Everyone would be demanding answers, and I dare say there would be protests in the streets to say the least...

...No other disease in history has been subjected to the spin that has been put on autism....

...It seems the scientific world isn't concerned that more children will be diagnosed with autism this year than with AIDS, diabetes and pediatric cancer combined.

It is a long article. Read the whole thing.

Throwing children into oncoming traffic: The truth about Autism
By: Kenneth Stoller, MD, FAAP with Anne McElroy Dachel
Tuesday, April 24th, 2007

I have been a practicing pediatrician for over 20 years. I saw my first child with autism in the early 90’s – before that I had never seen an autistic child, and I never saw an autistic child in all my years at school. The boy was 4 years old and you could see the frustration in his face as he wanted to speak but nothing intelligible would come from his mouth except shrieks of anguish.

As I studied his tortured face, it was as if there was an old time telephone switchboard operator inside his head trying to plug in the correct phone cables but not being able to complete the call. This family had known me from an old practice I worked at in another city, but they had traveled to see me because they trusted me and were looking for answers that no one seemed to have for them, but I too had no answers and I could see the mom was greatly disappointed. After the family left my office I poured over a few dusty textbooks and wondered if I had just seen a very rare disorder, a disorder that affected one child in 10,000 children…autism.

I had been involved in pediatrics for a decade by the time I saw this boy and it wasn’t as if I had no experience working with rare disorders. I had been able to identify a boy with Fragile-X syndrome and his mom ending up starting the Fragile-X support group at Children’s Hospital in Los Angeles.

I had noticed there was a strange upswing in children with attention disorders and impulsivity problems. I wasn’t a neurologist, but had studied with one of the finest at UCLA. While I was still a pediatric resident I spent time in his office where he helped me study the parade of unusual maladies that was starting to afflict children. I considered myself a closet neurologist, because that was what I had really wanted to specialize in – not pediatrics, but during my neurology rotation in medical school I learned some discouraging news. The attending neurologist, whom I greatly admired, had taken me on rounds for the first time and I watched him brilliantly explain to the family of a stroke patient how he had figured out where in the brain the blood clot had lodged. Then he stood up and walked out of the room and I asked him what therapy he was going to prescribe for the patient so he could recover from his stroke, “therapy?” he said, “there is no therapy.”

Well, I scratched neurology off my list…diagnosis was only meaningful if you could offer a treatment and it seemed neurology had few treatments to offer.

My second patient with autism came to me in the mid 1990’s, but to my relief the purpose of the visit was only to treat worms. I dutifully prescribed the medicine for pinworms and went on to my next patient. Later that afternoon I received a call from the autistic boy’s mom who wanted to know what was that medicine I had given her son for pinworms….her boy was starting to make eye contact, show affection and communicate with his family. She said it was amazing! I told her I didn’t really didn’t know what was in the pinworm pill but immediately prescribed enough pills for her son to take everyday for a month (normally you only take one or two pills to treat pinworms).

I called up the pharmaceutical company that manufactured the pinworm pill and spoke to one of their technical staff. They told me the pill worked by blocking the transport of molecules of a certain size from crossing cell membranes, so in the case of the hapless pinworms they were unable to absorb the sugars they feed upon in the lower intestines of their victims.

What did that have to do with this boy’s newly found improved behavior? Either one of two things were going on: 1) the drug was either blocking a molecule that shouldn’t be passing across the gut to the blood and then the brain and that molecule was having a drug-like affect on the brain, or; 2) the drug was blocking a molecule that normally crossed from the gut into the blood but in certain children these molecules had a strange drug-like affect.

I made several calls across the country to find a researcher who might be interested in this serendipitous finding which could be an important clue into this disease, because no where had I found anything saying that the guts of these children were involved in their disease. Unfortunately, no one I talked to was interested.

Testifying to Congress...

In May 2004, I had been invited to testify in front of the Government Reform Committee to discuss new developments in treating children with Autism Spectrum Disorders. I had been invited because of the work I was doing with hyperbaric oxygen in treating brain injured children, including fetal alcohol syndrome. Hyperbaric oxygen is where oxygen is given under pressure in chambers that are used to treat scuba divers who get the bends. I and several other physicians had found that hyperbaric oxygen was returning functionality to the brains of affected children.

Sitting next to me was a physician who told the story of his son who had become autistic after receiving vaccine and how he discovered his son was retaining toxic heavy metals, specifically mercury. Over the course of a year this physician had given his son a chemical to pull out the mercury and his son began speaking again and in fact jumped on his dad’s lap and addressed the Committee members having been restored to be a healthy boy without any signs of his autism.

In the 1990’s I had known there was a problem with many of the vaccines because they contained the preservative Thimerosal (50% mercury) and I had discouraged many parents from getting vaccine containing Thimerosal – there is no safe level of mercury, and it didn’t make sense to inject the most toxic non-radioactive element on the planet into children, but I never made the connection between autism and mercury. I knew what Thimerosal was because while I was in college my brother had a very bad reaction to the Thimerosal that used to be used in contact lens solution.

I was taken aback that something so obvious had not registered with me, but I didn’t realize that I and my physician colleagues had been subjected to a disinformation campaign to make us think there was no connection between mercury and autism. It has been known for sometime that mercury was causing autism, but someone was running interference. The question was who was running interference?

In February 2007, the watchdog agency on America's health, the Centers for Disease Control and Prevention (CDC), made the official announcement that a breath-taking one in 150 kids is autistic in the U.S. If you go to the CDC website on autism (http://www.cdc.gov/ncbddd/autism) you’d see lots of pictures of smiling happy children with autism and we’d be told that autism spectrum disorders are “a group of developmental disabilities defined by significant impairments in social interaction and communication and the presence of unusual behaviors and interests.”

You won’t be told that for many parents autism is a nightmare from which they never wake up. “Significant impairments” can mean that a child is violent and self-abusive, non-verbal, and physically sick. You won’t be told that this is a medical disease where most autistic children have significant inflammation in both gut and brain including colitis, super-infections and severe food allergies.

Even though autism affects one in 90 boys (four boys affected for every girl) in the U.S., the CDC can’t seem to tell us exactly why. The CDC states, “We still don’t know a lot about the causes of Autism Spectrum Disorders (ASDs). Scientists think that both genes and the environment play a role, and there might be many causes that lead to ASDs.”

The site also doesn’t mention that only one in 10,000 children in the 1970s, and one in 2,500 in the 1980s were autistic.

The CDC site also doesn’t tell us about a secret meeting that was held in June of 2000 where over 50 individuals from the CDC, WHO, NIH, American Academy of Pediatrics, and many representatives from pharmaceutical interests discussed data from the CDC Vaccine Data Sets showing that the increase in mercury exposure from the stepped-up vaccine schedule in the 1990’s caused an 11 fold increase in neurobehavioral disorders (www.autismhelpforyou.com/Simpsonwood_And_Puerto%20%20Rico.htm). What you will see on the CDC website is “Several studies have looked at whether there is a relationship between vaccines and autism. The weight of the evidence indicates that vaccines are not associated with autism.”

Evidence? Someone at the CDC was ‘cooking the books’ and what they told the public was not what they knew to be the case. You see, the CDC was put in the untenable position of helping to develop vaccines, mandate the vaccines, promote the vaccines, pay for their administration and be responsible for their safety – Ye olde fox watching the hen house scenario with the inevitable untoward result. There will always be a problem with vaccine safety until this responsibility is moved out of the CDC. Today, the CDC and its vaccine public-relation front group’s answer to any criticism is that the motivations of those that are critical of any part of the vaccine program are because they really want to destroy the vaccine program.

The truth is that the CDC has been very effective in laying the foundation to destroy the vaccine program all by themselves and their double speak is analogous to someone saying you can’t be against war and support the troops at the same time, you’re either for us or against us, etc. It is actually illegal for a federal agency to propagandize the American public, but that is exactly what the vaccine division of the CDC does. It has used the tactic of generating fear and it has earned billions of dollars for this agency.

Once the public loses trust in public health programs it can take many years to regain that trust. I am reminded of the Tuskegee syphilis experiments that are still a cause of distrust of public health programs amongst Black Americans.

Losing the Public Trust...

The cover-up at the CDC surrounding the mercury preservative found in so many vaccines (up until about 2003) has had very serious far-reaching implications. The children whose lives were forever changed by being injected with Thimerosal preservative were giving us a global ‘heads-up.’ They were showing us that the background level of mercury pollution has increased to the point that it is beginning to take its toll on the human species, but the CDC turned its head away from this crisis because it conflicted with what they were promoting in the vaccine program.

As I said before, mercury is the deadliest non-radioactive element on Earth, and 1000s of tons are spewed into the environment every year. With each coal-fire power plant that comes on line we are one step closer to exterminating human life on this planet. However, mercury is politically protected because of its connection with the fossil-fuel industry, dentistry (amalgam dental filings), and vaccine.

Thimerosal is still in the flu vaccine for children above the age of 3 and they are receiving as much as half of the dose of mercury that the child in the ‘90’s received. Thimerosal was not removed from vaccine in 1999. That was when the promise was made, but promises weren’t kept. Thimerosal is also in the meningitis vaccine.

Lower IQ levels linked to mercury exposure in the womb cost the USA $8.7 billion a year in lost-earnings potential according to a study done by the Mount Sinai Center for Children's Health and the Environment (http://fusion.mssm.edu/media/content.cfm?storynum=252). If it were publicly acknowledged that mercury pollution was the trigger for the autism epidemic this number would be in the trillions of dollars. One in six children is born to mothers with dangerous levels of mercury in their blood – perhaps the same one in six that the CDC admits have a neurobehavioral disorder.

Our regulatory agencies, such as the FDA and the EPA, have been taken over by the very industries they were mandated to regulate and the revolving door between industry and top-level appointees at these regulatory agencies has eliminated many of the normal safeguards we have relied on for our protection.

There is no disputing the numbers. Last month the Tonawanda News in New York reported “cases of autism in the state jumped from fewer than 2,000 in 1992 to 9,500 in 2003.” Even worse was the number of affected children in New York schools in 2005-2006 according to the Dept. of Education. New York’s autism total had increased to 12,257.

Maybe what we really need to be made aware of is what the eventual cost of autism will be to the U.S. The Autism Society of America tells us that autism is growing by 10-17% a year. They also say that it currently costs $90 billion a year and it's projected to increase to $200-400 billion annually in ten more years. A Harvard study out last year put the cost of lifetime support conservatively at $3.2 million per individual.

April was Autism Awareness month, but why are we only asking for awareness and not for answers? This is a glaring omission when we’re talking about so many affected children. Awareness, treatment, and identification are critical but so is preventing autism.

If we were talking about children going blind read how obscene this would sound:

“The number of children diagnosed with blindness is rapidly increasing. According to a study from the Centers for Disease Control and Prevention, nearly one in every 150 U.S. children is blind. These numbers are startling and this disability is affecting more and more families. Twenty years ago blindness was a very rare case. Today blindness is becoming a frightening statistic in every community. April is Blindness Awareness Month and I encourage everyone to take this opportunity to learn more about this disability…”

It would be absurd to relate this information about blindness without giving any explanation about what was causing it. Everyone would be demanding answers, and I dare say there would be protests in the streets to say the least.

The CDC and Autism...

CDC director Julie Gerberding announced the new autism rate of one in every 150 children with a flourish. She said that while there were more kids being diagnosed with autism, it doesn't mean the autism was necessarily on the rise. No one in the press seemed concerned that the CDC has been counting kids with autism for years and still can't tell us if there are actually more of them. After all, it’s just "better diagnosing by doctors" and "better statistics by the Centers for Disease Control." And now we learn that the Autism Genome Project (AGP) recently uncovered evidence shows that autism is caused by "genetic flaws.”

Common sense would tell us that pushing children onto a busy street, observing that some of them were injured, and then looking for a genetic reason why some of them were hit defies credulity.

No other disease in history has been subjected to the spin that has been put on autism.

Dr. Ezra Susser, chairman of epidemiology at Columbia University's Mailman School of Public Health in New York indicated that he believed the new genetic findings would help scientists to understand how "the environment might lead to autism by causing genetic changes."

Susser said, "It shows us that we need to think about many environmental factors that might influence autism."

The new genetic findings on autism got a lot of coverage from major news outlets and reports made it look like we're on the cutting edge of a major autism breakthrough. But let’s do a reality check here, genes don't just spontaneously and randomly mutate all by themselves. There has to be an environmental agent affecting these genes.

Some will have you believe that autism is some medical mystery that's always been around but we just haven't been able to get a handle on. So, show me the 30 year olds with autism, the 40 year olds with autism, and the 50 year olds with autism. Guess what? They aren’t there for the most part. The explosion in the number of children with autism is real but most of the scientific community has ignored this. Let’s face it they have been encouraged to ignore it, and anyone getting close to the truth finds that they get their NIH research grants pulled.

That’s right…science is being manipulated so that a big lie can stay alive and those culpable can remain unaccountable.

It seems the scientific world isn't concerned that more children will be diagnosed with autism this year than with AIDS, diabetes and pediatric cancer combined. News stories about autistic kids are now beginning to reveal the duplicity of CDC officials. These reports clearly show that this isn't something we have all the time in the world to theorize and ponder about.

All the experts searching diligently for those elusive genetic mutations seem blissfully unaware of the impact of autism on our schools and the impending disaster, as these autistic children become autistic adults. Anyone looking at the graphs and charts based on Department of Education statistics showing the soaring autism numbers has got to be worried. The dramatic increase in children in our schools disabled with autism is a scary preview of the impact they will have on the Social Security System in the next five to ten years.

Michael Ganz's Harvard study last year conservatively put the lifetime care cost for one autistic individual at $3.2 million dollars.

Robert Krakow from Lifespire gives us estimates that put the lifespan cost at $10.125 million per autistic individual. This figure is based on an annual rate for each person of $225,000 with a life expectancy of 66 years. It doesn't include the cost for the period up to age 21.

One of the many questions we need to ask ourselves is if the very integrity of the biosphere on this planet is in jeopardy unless there is an immediate curtailment of manmade mercury pollution. Coal miners don’t look at a dead canary and blow it off or say they have just “gotten better at diagnosing dead canaries,” or “that dead canary just had a genetic defect so pay no heed.” Yet that is exactly analogous to the situation we find ourselves. We continue to pollute the planet and ourselves (there is no separation), yet the very governmental agency that would normally be taking the lead in sounding this 5 alarm alert has been compromised and remains less than silent. Mercury pollution should be considered a global crime against humanity, against mammalian life on this planet and there should be zero tolerance.

If you want to know why more isn’t being done for autistic children, why there has been a strange cover-up of the facts, then simply follow the mercury and those that benefit from its use.

Kenneth Stoller, MD, FAAP is medical director of the Hyperbaric Medical Center of New Mexico (www.hbotnm.com) and the Hyperbaric Oxygen Clinic of Sacramento (www.hbot.info). He is President of the International Hyperbaric Medical Association. He can be reached at: info@hbotnm.com

Anne McElroy Dachel of Chippewa Falls, WI is a member of A-CHAMP (Advocates for Children's Health Affected by Mercury Poisoning) and the National Autism Association (NAA). She can be reached at: amdachel@msn.com.

NJ autism is 1 in 94

N.J. shows high rate of autism in study
Findings stir debate among the experts
Friday, February 09, 2007
BY PEGGY O'CROWLEY
Star-Ledger Staff


One of every 94 children in New Jersey has autism, the worst rate among the states tested in the most comprehensive study of the disease. The results already have sparked a debate over whether the findings are due to environmental factors or better detection methods. The study, released yesterday by the Centers for Disease Control and Prevention, looked at the prevalence of the disorder in 14 states by analyzing health and education records of children but did not search for causes.

In New Jersey, the study included nearly 30,000 children in Essex, Union, Hudson and Ocean counties and found the rate to be 10.6 cases of autism per 1,000 children (or 1 in 94), compared to an average of 6.6 per 1,000 (1 in 152) children overall.

The statistics are even worse for boys where New Jersey's rate is 16.8 per 1,000 (1 in 60) compared to girls (4 in 1,000), according to the study.

"Autism is more common than we believed and is a public health concern," said Catherine Rice, a behavioral scientist who led the study.

Autism Spectrum Disorder is a neurological condition characterized by impairments in social, communicative and behavioral development. The severity of autism varies over a spectrum and is more than three times as common in boys. Whites are diagnosed at higher rates than African-Americans or Hispanics.

Officials suggested one reason for New Jersey's higher rates is an aggressive system of assessment and treatment for children with autism. There is also a higher concentration of autism experts, such as pediatric neurologists and developmental pediatricians, than in places like West Virginia, where rates were low. Other states studied included Arizona, Maryland and Wisconsin.

Another reason may be that the definition of autism has expanded within the last decade to include milder versions of the disorder, said Melissa Nishawala, a child psychiatrist who heads the Autism Spectrum Disorders Service at the New York University Child Study Center.

Walter Zahorodny, who heads the New Jersey Autism Study, attributed the state's autism rates to early intervention and school services for autistic children, and heightened awareness among parents. Children with perceived problems are evaluated by study teams assigned to schools. Children under 3 are evaluated by early intervention teams and given therapy under a program of the state Health and Senior Services Department.

The number of toddlers in the early intervention program has been rising steadily, said State Health Commissioner Fred M. Jacobs. The budget for the program increased from $22 million in 2000 to $79 million this year, $11 million short of the amount needed for the entire fiscal year, he said.

CDC: Autism Incidence now 1 in 150

From Unlocking Autism:

PREVALENCE OF AUTISM NOW 1 IN 150, ACCORDING TO NEW CDC REPORT

WASHINGTON, DC (February 8, 2007) -- This morning, the Centers for Disease Control and Prevention (CDC) released, through its Morbidity and Mortality Weekly Report (MMWR), the latest revised prevalence figures for autism. The report indicates that the prevalence of autism is now 1 in 150, up from the 1 in 166 figure reported by the CDC in January, 2004.

Today's report states, "Findings from this first U.S. multi-site collaborative study to monitor ASD prevalence demonstrated consistency across the majority of sites, with prevalence statistically significantly (p<0.001) higher in New Jersey. Average ASD prevalence across all six sites was 6.7 per 1,000 children aged 8 years. These results indicate that ASDs are more common than was believed previously."

Speaking at a Capitol Hill briefing about the new data, Dr. Gary Goldstein, Autism Speaks' Scientific Advisory Committee Chair and President of the Kennedy Krieger Institute said, "These new numbers provide a much more accurate picture of a disorder that has undoubtedly become a major national health crisis. Our dedication to finding critical answers about autism -- potential causes, better treatments and, hopefully, a cure -- must become that much more urgent today."

These new prevalence estimates are the first to come from multiple sites utilizing the same methodology for the same points in time. (Previous prevalence estimates have been from single sites and have relied on differing methodologies). According to the CDC, these data represent the most comprehensive effort to obtain accurate prevalence figures for Autism Spectrum Disorders to date, and offer important information about the prevalence of these conditions in multiple parts of the U.S.

As part of this study, six ADDM sites evaluated the prevalence of ASDs for children who were eight years old in 2000 (born in 1992): Arizona, Georgia, Maryland, New Jersey, South Carolina and West Virginia.

An additional eight sites determined ASD prevalence for children who were eight in 2002 (born in 1994): Alabama, Arkansas, Colorado, Missouri, North Carolina, Pennsylvania, Utah and Wisconsin.

Autism in China

China has more than 100,000 autistic children: expert
People's Daily (China)
December 07, 2006

China has at least 100,000 autistic children but there is a lack of
adequate professional treatment available, an expert said Thursday.

"According to the statistics from the second China National Sample
Survey on Disability, there are 100,000 autistic children in China.
But the real number is much bigger than that," said an official
surnamed Li with the Beijing Rehabilitation Association for Autistic
Children (BRAAC).

"Beijing alone has about 80,000 autistic children," Li said.

A report by China Central Television (CCTV) said China has at least
1.8 million people, including 400,000 children, suffering from
autism.

Autism is a mental disorder that makes it very difficult for people
to communicate properly, or to form relationship with others. It
accounts for a hefty proportion of mental disability among children,
but its cause is a mystery. Some scientists believe it is genetic,
while others say it could be environmental.

Doctors say children with autism should receive treatment between
the ages of two and 12. With proper treatment at the right time, 20
to 30 percent of sufferers will learn to be independent adults.

However, there are only a few institutions in the country with
adequate funding to give special treatment to autistic children,
and "a lot of autistic children miss prime opportunities for
treatment because of inadequate institutions and funds", according
to Jia Meixiang, deputy chairman of BRAAC.

"The burden falls almost completely on the shoulders of the
patients, and some parents have to fund rehabilitation centers
themselves," said Jia, quoting Wang Guoqiang, father of a autistic
child, who has donated 100,000 yuan each year since 2005 to BRAAC to
sponsor poor families with autistic children.

Autism patients are not covered by Chinese law on the Protection of
the Handicapped.

Earlier reports suggest that China is making efforts to improve the
situation of autistic patients. Vice Premier Zeng Peiyan called on
the public to care more for children suffering from autism at a
charity function to raise funds for the disabled on Dec. 1.

The China Welfare Fund for the Handicapped also pledged to set up a
special fund to support research into autism and establish
rehabilitation organizations for children.

J.B. Handley: Hey CDC, You Forgot to Count Our Son

Hey CDC, You Forgot to Count Our Son
By J.B. Handley
www.generationrescue.org

I'll never forget the late fall of 2003. It felt like every day on the news I was reading another story about the flu outbreak that was killing children in Colorado and other places, I can't quite remember where.

We were panicked. With two young small boys, death from flu was horrifying, and the news also explained how limited the supply of flu vaccines was around the country. I still remember the day I came to work with the sole focus of finding flu vaccine somewhere, anywhere to help my babies. After dozens of calls, I felt lucky enough to
happen upon a doctor with some extra vaccines who was ready to see our boys immediately. Whew, bullet dodged, I figured.

Our youngest son, Jamison, was the highest priority. Fourteen months old, he was sick a lot more than his four year old older brother. Jamison was on antibiotics all the time, and he had a lot of eczema. Could he handle the flu? It seemed like it would really be tough on him – he was at risk, he needed this shot.

I couldn't make the shot appointment, I was busy. As usual, my wife soldiered on without me and endured the cries from her two warriors who got vaccinated. Jamison had been particularly brave about the whole thing. How great, we thought! He's safe now!

Our Christmas video from the fall of 2003, just a couple weeks after the first flu shot, shows a happy and engaged Jamison, very excited about all the presents in our living room, and responding and watching his older brother celebrating. A happy kid, in our world, engaged. A part of the family.

January came. Flu deaths were still in the news, although not quite as often. The flu shot was actually a two-part shot that year. Get the flu shot, come back in 4 weeks later for a booster. That's what they told us. We decided to skip the booster for our oldest son, but we knew Jamison really needed it. Dutifully again, we made sure Jamison got that second shot.

**

A study came out this week in the Journal of the American Medical Association. It's called: "Safety of Trivalent Inactivated Influenza Vaccine in Children 6 to 23 months old."

It basically says the flu shot is perfectly safe for kids. It also says a couple of interesting things.

One. "Financial support for this study was provided in full by the Centers for Disease Control and Prevention."

Two. "Our primary outcome measure was any medically attended event associated with trivalent inactivated influenza vaccine in a 14-day risk window after vaccination."

Oh, and there's a third thing it says, too. It's at the end of the study. It says of the nineteen authors, nine have financial ties to vaccine manufacturers. And, four more of the authors work at CDC. Here's one of nine examples of the financial disclosure:

"Dr. Marcy reports working as a consultant for Sanofi Pasteur, Merck, GlaxoSmithKline, MedImmune, and Abbott, and serving on the speakers' bureau for Sanofi Pasteur and GlaxoSmithKline." (Note: Sanofi Pasteur is the leading manufacturer of flu vaccine.)

I don't know, Dr. Marcy, I just don't know, can I trust you to tell me the truth if the vaccine hurt our kid?

Oh, and they also wrote this, towards the end of the study:

"It is also important to note that there is scant data on the efficacy and effectiveness of influenza vaccine in young children."

**

Like many parents trying to understand what happened to their child, we re-traced Jamison's steps back to that fall and Christmas of 2003. The decline seems to have begun sometime in January, soon after the second flu shot. He began to play alone. His words stopped. He started running back and forth along walls and fences. For hours.

Like many parents, it took us a while to figure out what was happening to our son. By March, we thought something was wrong. By April, we began to panic a little as his behaviors got worse and he seemed to always be sick. By May, we happened upon this test called the M-CHAT, and we realized our son met the criteria for autism.

Jamison didn't make the JAMA study. He didn't go to the doctor or hospital in the 2 weeks after he got the flu shot. His medical condition today, autism, is not one of the outcomes the study authors looked for.

In 2003, when Jamison got his flu shot, I didn't know that the CDC had released a 1999 statement saying:

"Because any potential risk is of concern, the Public Health Service, the American Academy of Pediatrics, and vaccine manufacturers agree that thimerosal-containing vaccines should be removed as soon as possible. Similar conclusions were reached this year in a meeting attended by European regulatory agencies, the European vaccine
manufacturers, and the US FDA which examined the use of thimerosal-containing vaccines produced or sold in European countries."

I also didn't know the American Academy of Pediatrics released a statement in 2001 saying:

"Mercury in all of its forms is toxic to the fetus and children and efforts should be made to reduce exposure to the extent possible to pregnant women and children as well as the general population."

Jamison's 2 flu shots contained mercury. 25 micrograms each. I didn't know that. I do know that every time I hear the word "flu vaccine" I get sick to my stomach. How come CDC or AAP didn't make a point of telling me flu vaccine in 2003 still contained mercury? It would have impacted our decision.

I wish the thirteen study authors with clear conflicts could come to my house, watch my son's videotape, and review his medical tests. I wish all of them would have spent their time differently. Four years passed between the CDC's press release and Jamison's vaccine. Did the mercury really need to be there? And, why is it still there today, seven years later?

CDC, our son is not part of the data in your study. But he should be.

Oct 26, 2006

The Age of Autism: 'A pretty big secret'

The Age of Autism: 'A pretty big secret'
By Dan Olmsted
UPI Senior Editor

It's a far piece from the horse-and-buggies of Lancaster County, Pa., to the cars and freeways of Cook County, Ill.

But thousands of children cared for by Homefirst Health Services in metropolitan Chicago have at least two things in common with thousands of Amish children in rural Lancaster: They have never been vaccinated. And they don't have autism.

"We have a fairly large practice. We have about 30,000 or 35,000 children that we've taken care of over the years, and I don't think we have a single case of autism in children delivered by us who never received vaccines," said Dr. Mayer Eisenstein, Homefirst's medical director who founded the practice in 1973. Homefirst doctors have delivered more than 15,000 babies at home, and thousands of them have never been vaccinated.

The few autistic children Homefirst sees were vaccinated before their families became patients, Eisenstein said. "I can think of two or three autistic children who we've delivered their mother's next baby, and we aren't really totally taking care of that child -- they have special care needs. But they bring the younger children to us. I don't have a single case that I can think of that wasn't vaccinated."

The autism rate in Illinois public schools is 38 per 10,000, according to state Education Department data; the Centers for Disease Control and Prevention puts the national rate of autism spectrum disorders at 1 in 166 -- 60 per 10,000.

"We do have enough of a sample," Eisenstein said. "The numbers are too large to not see it. We would absolutely know. We're all family doctors. If I have a child with autism come in, there's no communication. It's frightening. You can't touch them. It's not something that anyone would miss."

No one knows what causes autism, but federal health authorities say it isn't childhood immunizations. Some parents and a small minority of doctors and scientists, however, assert vaccines are responsible.

This column has been looking for autism in never-vaccinated U.S. children in an effort to shed light on the issue. We went to Chicago to meet with Eisenstein at the suggestion of a reader, and we also visited Homefirst's office in northwest suburban Rolling Meadows. Homefirst has four other offices in the Chicago area and a total of six doctors.

Eisenstein stresses his observations are not scientific. "The trouble is this is just anecdotal in a sense, because what if every autistic child goes somewhere else and (their family) never calls us or they moved out of state?"

In practice, that's unlikely to account for the pronounced absence of autism, says Eisenstein, who also has a bachelor's degree in statistics, a master's degree in public health and a law degree.

Homefirst follows state immunization mandates, but Illinois allows religious exemptions if parents object based either on tenets of their faith or specific personal religious views. Homefirst does not exclude or discourage such families. Eisenstein, in fact, is author of the book "Don't Vaccinate Before You Educate!" and is critical of the CDC's vaccination policy in the 1990s, when several new immunizations were added to the schedule, including Hepatitis B as early as the day of birth. Several of the vaccines -- HepB included -- contained a mercury-based preservative that has since been phased out of most childhood vaccines in the United States.

Medical practices with Homefirst's approach to immunizations are rare. "Because of that, we tend to attract families that have questions about that issue," said Dr. Paul Schattauer, who has been with Homefirst for 20 years and treats "at least" 100 children a week.

Schattauer seconded Eisenstein's observations. "All I know is in my practice I don't see autism. There is no striking 1-in-166," he said.

Earlier this year we reported the same phenomenon in the mostly unvaccinated Amish. CDC Director Dr. Julie Gerberding told us the Amish "have genetic connectivity that would make them different from populations that are in other sectors of the United States." Gerberding said, however, studies "could and should be done" in more representative unvaccinated groups -- if they could be found and their autism rate documented.

Chicago is America's prototypical "City of Big Shoulders," to quote Carl Sandburg, and Homefirst's mostly middle-class families seem fairly representative. A substantial number are conservative Christians who home-school their children. They are mostly white, but the Homefirst practice also includes black and Hispanic families and non-home-schooling Jews, Catholics and Muslims.

They tend to be better educated, follow healthier diets and breast-feed their children much longer than the norm -- half of Homefirst's mothers are still breast-feeding at two years. Also, because Homefirst relies less on prescription drugs including antibiotics as a first line of treatment, these children have less exposure to other medicines, not just vaccines.

Schattauer, interviewed at the Rolling Meadows office, said his caseload is too limited to draw conclusions about a possible link between vaccines and autism. "With these numbers you'd have a hard time proving or disproving anything," he said. "You can only get a feeling about it.

"In no way would I be an advocate to stand up and say we need to look at vaccines, because I don't have the science to say that," Schattauer said. "But I don't think the science is there to say that it's not."

Schattauer said Homefirst's patients also have significantly less childhood asthma and juvenile diabetes compared to national rates. An office manager who has been with Homefirst for 17 years said she is aware of only one case of severe asthma in an unvaccinated child.

"Sometimes you feel frustrated because you feel like you've got a pretty big secret," Schattauer said. He argues for more research on all those disorders, independent of political or business pressures.

The asthma rate among Homefirst patients is so low it was noticed by the Blue Cross group with which Homefirst is affiliated, according to Eisenstein.

"In the alternative-medicine network which Homefirst is part of, there are virtually no cases of childhood asthma, in contrast to the overall Blue Cross rate of childhood asthma which is approximately 10 percent," he said. "At first I thought it was because they (Homefirst's children) were breast-fed, but even among the breast-fed we've had asthma. We have virtually no asthma if you're breast-fed and not vaccinated."
Because the diagnosis of asthma is based on emergency-room visits and hospital admissions, Eisenstein said, Homefirst's low rate is hard to dispute. "It's quantifiable -- the definition is not reliant on the doctor's perception of asthma."
Several studies have found a risk of asthma from vaccination; others have not. Studies that include never-vaccinated children generally find little or no asthma in that group.

Earlier this year Florida pediatrician Dr. Jeff Bradstreet said there is virtually no autism in home-schooling families who decline to vaccinate for religious reasons -- lending credence to Eisenstein's observations.

"It's largely non-existent," said Bradstreet, who treats children with autism from around the country. "It's an extremely rare event."

Bradstreet has a son whose autism he attributes to a vaccine reaction at 15 months. His daughter has been home-schooled, he describes himself as a "Christian family physician," and he knows many of the leaders in the home-school movement.

"There was this whole subculture of folks who went into home-schooling so they would never have to vaccinate their kids," he said. "There's this whole cadre who were never vaccinated for religious reasons."

In that subset, he said, "unless they were massively exposed to mercury through lots of amalgams (mercury dental fillings in the mother) and/or big-time fish eating, I've not had a single case."

Federal health authorities and mainstream medical groups emphatically dismiss any link between autism and vaccines, including the mercury-based preservative thimerosal. Last year a panel of the Institute of Medicine, part of the National Academies, said there is no evidence of such a link, and funding should henceforth go to "promising" research.

Thimerosal, which is 49.6 percent ethyl mercury by weight, was phased out of most U.S. childhood immunizations beginning in 1999, but the CDC recommends flu shots for pregnant women and last year began recommending them for children 6 to 23 months old. Most of those shots contain thimerosal.

Thimerosal-preserved vaccines are currently being injected into millions of children in developing countries around the world. "My mandate ... is to make sure at the end of the day that 100,000,000 are immunized ... this year, next year and for many years to come ... and that will have to be with thimerosal-containing vaccines," said John Clements of the World Health Organization at a June 2000 meeting called by the CDC.

That meeting was held to review data that thimerosal might be linked with autism and other neurological problems. But in 2004 the Institute of Medicine panel said evidence against a link is so strong that health authorities, "whether in the United States or other countries, should not include autism as a potential risk" when formulating immunization policies.

But where is the simple, straightforward study of autism in never-vaccinated U.S. children? Based on our admittedly anecdotal and limited reporting among the Amish, the home-schooled and now Chicago's Homefirst, that may prove to be a significant omission.
--
This ongoing series on the roots and rise of autism welcomes comment. E-mail: dolmsted@upi.com

Here's Why the Disdain...

This post is a response to a post by JP on his new blog, SupportVaccination.org.

[Update: JP has decided to leave the vaccine discussion and take his blog down, so the link no longer works. I wish I had saved a copy of the initial post that this was written in response to, but alas, I was not forward thinking enough to save a copy.]

[Update: John Cartan is the man! He found a cashed version for me. Here ya go: http://tinyurl.com/7celt ]

In his post, he ask questions of parents like me, that I am eager to answer. Parents have been accused of being "scientifically illiterate" and dismissing "well designed" population studies that show that there is no link between autism and thimerosal. I thought this was a good opportunity to tell the blogesphere, at least in part, why we are not so hot on the IOM’s epidemiological studies.

Dear JP,

As one of those parents with… well ‘distain’ is a harsh word, lets call it an ‘unwillingness to rely on’ the epidemiological studies cited by the IOM, it probably falls upon the likes of me to answer the question you pose in the title of your piece.

Why the disdain for epidemiology...

Since I am the likes of me, I will take this on and answer your questions and challenges from my point of view.

I am going to break up my response to your post into a few separate posts, as there are several things to address.

I am the mother of an autistic 3 year old boy and a marriage and family therapist, with a masters degree from Johns Hopkins. The statistics courses that I took in grad school were designed to educate me on how to evaluate the research of others to see if it was something we should incorporate into the treatment of a client. This education has turned out to be useful in evaluating the epidemiological studies that have been offered up to prove that thimerosal is safe.

I have been looking at these studies with two basic questions in mind:

Can this study be applied to entire population of children in the U.S. and thereby be useful for guidance in setting vaccine policy? If so, how?

Can I use this study to make a determination as to the safety of vaccinating my sons, one who is autistic and one who is (mostly) neurotypical. If so, how?

I want to start first with what an epidemiological study is and what it can do.

Any question like this starts with case studies. Some one notices two things occurring together (smoking and lung cancer, vaccine reaction and autism) and they look at the plausibility of a relationship (smoke filling the lungs could cause damage, neurotoxic mercury in vaccines could cause brain damage).

Next they want to see if what they are observing in their setting could be happening else where and after conferring with associates and finding that others see the possibility of a link as well, they commission a large population study.

Epidemiological studies are limited in their use. They can be used to spot patterns and trends, but they can almost never be used to prove or disprove anything. They are one of the first stages of a medical inquiry and act as a divining rod to tell researchers where to start digging.

They are very vulnerable to confounders, because they are asking broad questions over huge numbers of people; so they should not be used to make definitive statements as much as to help researchers shape the next question that should be asked.

Those next questions are taken to smaller population studies (where confounders can be more easily controlled), lab studies (in vitro), and actual case studies (in vivo). The results of those studies, helps to further refine the questions being asked, which can be sent back up to large population studies, and so on, and so on until, (hopefully) the results of your epidemiological, in vitro and in vivo studies all line up like tumblers in a lock and the lock opens with one key.

This is not what we are seeing yet when we look at totality of autism/thimerosal research, as the IOM report shows. In fact the large epidemiological studies relied on for the conclusions in the report are at odds with other in vitro and in vivo research also in the report. The tumblers do not line up and therefore all of the research should be scrutinized to see what is throwing things off.

The scrutiny of the epidemiological studies has shown that they do not measure what they purport to measure, and even if they did, they cannot be applied in the way that they are being applied.

Your example of how epidemiological studies were used in the 50’s a nice example of how they can be used well and lead researchers to determine the source of a terrible illness like lung cancer, unfortunately it seems that what is going on today in this inquiry is a very different scenario.

What we know so far about autism tells us that it is not as straight forward as, smoke cigarettes get lung cancer. The thimerosal studies seem to have multiple confounders (genetic, environmental, etc) that cut into the reliability of epidemiological studies.

The two studies that are relied upon the most heavily are the Danish Study and the Verstraten Study. Both of these studies were designed and carried out very poorly and are being used very badly.

Here is why I treat them with such skepticism. (Quoting myself in part from an earlier post that responded to a piece by Dr. Laidler)

One of the problems that complicates the search for the causes and cures of autism is the assumption that it is a single disorder and that all cases are caused by the same thing. This is in contrast to a disease like AIDS in which all cases are brought on by the HIV virus.

What is diagnosed as ‘Autism’ is actually likely to be more than one physical syndrome. Because Autism is a DSM diagnosis and based solely on behavioral criteria, the diagnosis does not address the different sets of physical anomaly clusters that researchers are finding when they look at the biology of ‘autistic’ patients.

One research group has recently made a distinction between two types of autistic profiles. One, labeled complex autism and occurring in about 30% of autism cases, presents with smaller head size, greater chance of low IQ, lower rate of siblings with the disorder and seems to have close to a 1:1 ratio of occurrence between boys and girls.

The other, essential autism, presents with larger head size, few structural brain abnormalities and has a ratio of 7:1 boys to girls.

This is a huge confounder to any epidemiological study, even a well designed one, that looks at all cases of diagnosed autism with out differentiating between groups with different phenotypes.

In discussing research into the causes of autism (in this case the genetic cause), one of the researchers commented, “…Studies haven’t found anything because they’re looking at a big heterogeneous group — a mishmash of people with different etiologies,” Takahashi said.”

One could postulate that only the larger head size group displays autistic symptoms because of mercury poisoning, as mercury toxicity does not always present with impaired IQ; and because in vitro thimerosal toxicity studies preformed at the University of Kentucky showed that estrogen has a protective effect against, and testosterone exacerbates the damage of, ethlymercury as a neurotoxin.

In light of this new information it seems that a better question than, “is autism is caused by mercury toxicity” which is the question largely being asked in these epidemiological studies, would be, “are cases of mercury toxicity being misdiagnosed as autism”.

The answer to that question cannot be found in a large epidemiological study.

The authors of the the final IOM report on the thimerosal/autism relationship in 2004 stated themselves that the epidemiological research it was relying on to clear thimerosal as a cause of autism would not pick up on a sub-set of the population that was genetically vulnerable to mercury poisoning.

If that is the case, then how much more so to these studies fail to give us meaningful data if the children who may be mercury poisoned are members of two different subsets being confused with one another?

Since the working theory in biomedical treatment of autism is that many of the children diagnosed with autism are genetically vulnerable sub set who cannot excrete heavy metals, and since this treatment is bringing about successes in the abatement of many children's autistic symptoms, does that not throw into question the use of these large scale studies to find the correlation between thimerosal and autism as easily as they would between smoking and cancer?

What causes further problems for people who want to use these studies to show that the case is closed on thimerosal and NDDs (as the conclusion in the IOM study does) is that these studies are not well designed and are very poorly applied.

The findings in the Denmark study have come under serious criticism. When the data of study was reviewed, it was found that the sampling presented fatal flaws.

The low incidence of autism during the use of thimerosal can be attributed to the fact that the database that was used only tracked inpatient cases of autism at the time. At the point in time where thimerosal was removed, the database was expanded to include cases that were diagnosed at a large clinic outside of Copenhagen where 20% of the countries autistic patents were diagnosed. At the point in time where thimerosal was no longer used, but the cases of autism seem to have skyrocketed, the database had expanded further to include all cases of autism, inpatient and outpatient, in the country.

The sample size of the study was only 956 children. That is the number of people that their disability database had on record as being diagnosed with autism in Denmark between 1971 and 2000. 956 people in 29 years. That is 33 people a year in the entire country. [Hyperbole warning] I have that many autistic kids in my kitchen right now!

The study is further compromised by the fact that several of the coauthors were employed by the Statens Serums Institut, the countries sole vaccine manufacturer who would presumably be held liable if it was indeed found that the use of thimerosal in vaccines contributed to autism.

[Update: Kristjan has pointed out here that the Danish health care system and liability laws are different from ours and no such legal liability exists for the Statens Serums Institut. I still wonder what might motivate these researchers to stand buy this study and not protest its poor use. More on that in the comments here, here and here.]

Further, even if the study were reliable, applying it to the U.S. population as the IOM has done presents problems. Children in Denmark were administered less than half the amount of thimerosal of US children, and it was administered later and over a longer period of time.

Finally, American children, like my sons, are subject to an autism rate at least 10 times that of Denmark, so this study should not be applied to determine their risk of autism from thimerosal exposure.

It seems to me to be like doing a population study of Sickle Cell Anemia in Denmark and applying it to the population of Baltimore. Clearly U.S. children have some other intervening factors that increases the threat of NDDs, be they genetic, environmental or the thimerosal dosage and age of administration.

The problems with the Verstraten study, the only epidemiological study that the CDC has done in the U.S. to examine the possible link between thimerosal containing vaccines and neurodevelopmental disorders, are severe. It is such a badly designed and executed study that I can hardly do it justice in a blog post. I started working on a review of it about 6 weeks ago for my blog and I still have not finished.

In fact, it is currently the subject of a Senate investigation that may result in hearings on Capitol Hill.

I will try to do a quick review of my ‘distain’ for it, as I actually think the harshness of your term might apply to my attitude in this case.

Verstraten started with a nice, simple study. He had medical records of about 180,000 kids in California, a good sized sample. He broke them up into four main groups, kids who received no thimerosal, a little thimerosal, a moderate amount, and a high amount. He checked to see if the amount of thimerosal that they got, and when they got it (two months of age, six months of age, etc) corresponded to an increased risk for different types of neurodevelopmental disorders, and NDDs in general.

The study began in November of 1999 and was supposed to be finished in 4 months.

What he found was that the more thimerosal a child got, the higher their chance of an NDD, with children who got the highest doses had a huge risk of having a disorder, more than 600% in one case. He also found that the age at which it was administered determined the type of disorder that a child would develop.

Verstraten sent an email to another CDC employee, Dr. Davis, and said that no matter what he tried, could not make the relationship go away.

In December the two men, and additional researchers at the CDC, began to change the parameters of the study. When you do this, you are supposed to document all the changes and justify why they are needed to properly answer the question you are asking. They did not.

The changes they began to make to the statistical analysis of the study are now described by the CDC as “improvements”. How they could see some of these changes as improvements is unbelievable to me. Here are some of the changes:

They took the zero thimerosal group, and tucked them into the low thimerosal group. Now they only have three groups and in effect they have brought up the bottom, so the top does not seem as high.

That did not bring down the risk enough, so they decided to get rid of the no thimerosal group all together, so now you are only comparing the low, middle and high groups, bring up the bottom further.

They got rid of a catch all group of NDDs so the study no longer addressed the question, ‘does an increase thimerosal increase the risk of a neurodevelopmental disorder’. Now it only looked at each disorder separately.

Still not dampening the signal enough, the decided to go into and change some of the actual medical records of the patients they were studying. The CDC reports that these were correcting errors in patient records, but will not offer any proof of this claim, saying instead that the data that would confirm their claim was ‘lost’.

This brought the risk down, but still showed a link between thimerosal and NDDs, so they then started dropping children from the study. They used about 20 different ICD9 codes to exclude any child from the study that had almost any birth complication or whose mother had almost any pregnancy complication. This included serious problems like premature birth and birth defects, but went all the way down to moms who took an antibiotic while pregnant. In effect this removes from the study many children who are likely to go on to develop NDDs.

This is fine to do in your study if you want, but it renders it almost completely useless for application to vaccine policy. This policy covers all U.S. children, and lots and lots of those children were subject to pregnancy and birth complications.

This study now no longer applies to my children as both of my pregnancies had complications.

At this point it is safe to say that this study no longer addressed the question of whether or not an increase in the dose of thimerosal increases the chance of an NDD in American children. But the ‘improvements’ don’t stop there.

Many more people are given a chance to make suggestions, the Simpsonwood meeting was held, comments are made that the study never should have been done in the first place, and the research is further bastardized.

A stop date was put in place so that children who were initially diagnosed with something like a speech delay, were then always considered to be speech delayed, even if they went on to be diagnosed with a more serious disorder like full blown autism. This is important as a large number of kids diagnosed with autism at ages 3 and 4 are diagnosed with some milder developmental delay at 18 months or two years of age. Doctors don’t like giving the autism diagnosis early, and the state of California (where the study was done) won’t even formally evaluate children for autism, or diagnose it before the age of 3.

I live in California. My son was evaluated at 2 and found to have ‘speech delays’ and offered early start services. To all involved in his treatment, he was autistic, but he did not become officially “Autistic” according to the state and his own records until age 3. Chandler would not have been considered Autistic for the purposes of the Verstraeten study.

My favorite ‘improvement’ was to add into the study children who were only a year or so old at the cut off date of the study. No child is diagnosed with autism, or indeed much of anything, this early. They all could have gone on to be diagnosed with a neurodevelopmental disorder but in the Verstraeten study, they are all considered healthy and unaffected by thimerosal.

Even with all these shenanigans, they STILL could not completely get rid of the relationship between thimerosal and NDDs. They then employed a tactic that served to make their own findings in the study irrelevant.

They split the whole group up into two, one large one from one HMO and one smaller group from another HMO (I think it was around 16,000). The small group was now too small to be of any statistical power. They used that group to say that the results in the first group could not be replicated in the second.

Then they bought another database from an HMO in New England, which was odd because they already owned dozens of them at the cost of millions of dollars in tax payer money. The HMO had failed and was in receivership due in part to poor record keeping on out of date computers. The HMO also used their own diagnostic system that didn’t even implement ICD9 codes and the researchers used completely different parameters to study this database than they did in the first. They used this third group of only 12,000 or so patients, as yet another example of how they could not replicate the results of the first, large group, which they were now referring to as ‘the screening study’.

The 4 month study took 4 years and, in my opinion, came out looking like something akin to Frankenstein’s Monster.

This study does not offer a meaningful measure of anything and cannot be applied to any group that I can think of.

Add to this the fact Verstraten himself became an employee of Glaxo (currently being sued by parents of autistic children) half way through the study, which was not disclosed when the study was published, and it becomes easy to see why where the distain comes from.

When asked to justify all the changes and publish the data so that the study could be confirmed and replicated, the CDC repeated the claim that the original data was ‘lost’. A private contractor testified before congress that he had been ordered to destroy the data sets, “to insure patient confidentiality”. This is a violation of federal law and is what sparked the congressional investigation currently underway.

It is practice in the scientific community that if a study can not be confirmed or replicated, that it should be withdrawn. Despite parent requests for such action, the CDC stands by this study and refuses to pull it.

As a parent who is looking at this issue as hard as I can, I am upset that the IOM, who should know better, keeps calling these studies ‘well designed’ and has used them to show that the case is closed on thimerosal and autism.

Verstraeten himself says that the study is a ‘neutral study’ and does not find for or against thimerosal in the implication that it is involved with NDDs.

In grad school, in order to pass statistics we had to take studies and break them down, justifying if and how they could be used for us to make treatment decisions. The Institute of Medicine would have failed my 600 level stats courses.


ADDENDUM:

People have asked for citations. What hasn't been referenced above can be found in David Kirby's book, Evidence Of Harm as this post just attempts to squish his big fat book into a blog post.

Additional addendum:

Julie Gerberding was asked by Congress to defend Verstraeten and had to reply that it was a useless study.  She did so in secret, but the document was leaked by a congressional staffer.  Even though everyone knows it is garbage, Pediatrics has not retracted it, and some still claim it clears the vaccine/autism theory.  However CDC removed it from their list of research that refutes the theory in by the end of 2008 when news of the Congressional/CDC exchange went public.