June 29, 2007

Requesting Answers and Actions from Autism Speaks

June 28, 2007

From: Ginger Taylor, M.S. of AdventuresInAutism.com

To: The Greater Autism Community

For just over a month I, and many others, have been writing about our concerns over the way Autism Speaks has been using its considerable resources. During its two year existence, funds have been directed toward projects that yield little improvement in the quality of life for those with autism and AS has reportedly shown an unwillingness to cooperate with, or even acknowledge the contributions of, all but a few large autism groups. This action is in direct conflict with the public image held out by AS that they listen to all those in the autism community and that they wish to speak for the autism community.

Because Autism Speaks is raising tens of millions of dollars a year from the public based on their claim that they are serving people with autism, they must be held to account if these funds are not indeed being spent on projects that serve autistics.

Thus far, the only response from anyone at Autism Speaks has come from Jon Shestack, founder of Cure Autism Now and board member of Autism Speaks. Mr. Shestak has posted a public letter stating his earnest intentions, asking for restraint and patience in criticizing AS to give them a chance to respond on the merits, and calling on the board of AS to do some self examination to see if it is time for a change in direction. I believed that his public stance was both reasonable and admirable, and I committed to waiting to hear from AS.

After a week, during which Mr. Shestak stated his intention to respond to my open letter to him, the silence has continued. It is rumored that AS has no plans to comment on the issues that have been raised because they believe that ultimately the controversy will not cut into their bottom line. I do not know if this is accurate information, but it may explain the deafening silence from AS.

In light of this, I am proposing that those in the greater autism community, those who have not been invited into the “Big Tent” that Autism Speaks has stated that it wants to be, express their concerns and frustrations directly to Autism Speaks in one concerted effort. For the next two weeks I will be collecting letters from those in the autism community, both from individuals and organizations, who wish to directly question AS on their direction, methods and actions, and who wish to make specific requests of them. I will be delivering these letters to Autism Speaks under one cover letter.

If you would like your letter to be included, here are the requirements:

  • Your letter to Autism Speaks be in good faith.  This is not an opportunity to vent the frustration that many of us have, but to open a constructive dialogue and attempt to get real answers and action. 

  • Your letter to AS be specific.  List specific complaints and specific actions that you want taken.  In my letter to Mr. Shestack I asked, “… if we compile a list of hard questions that we want answers to, a list of “awareness” messages that we want circulated, a list of service projects we want undertaken, a list of legislation that we want lobbied and a list of research that we want funded, will the AS board give us open, concrete answers and actions, or legitimate justifications where they will not?”  Your letter should be such so that AS can have the chance to make specific answers and take specific action.

  • Your letter to AS remain private for the time being.  Autism Speaks should have the opportunity to respond privately, either to you specifically or to the group as a whole, before the letters are made public.  You may not post your letter publicly until AS has had a reasonable amount of time to respond to it privately.  I will announce an agreed upon date.

  • Your letter must be signed and include your contact information.

  • Your letter must be submitted to me at ASLetters@AdventuresInAutism.com by July 13th, 2007

This debate as to how to best serve those with autism is becoming increasingly contentious. While that is regrettable, it is also reasonable because ultimately, the quality of the lives of millions of people world wide is at stake. It is my belief that the only thing that will change the tone of this debate is very frank, very transparent conversation followed by very concrete action. The days of paying lip service to the treatment and care of those with autism, and those yet to be born who may potentially be autistic, are long gone.

It is time for those who hold the most power in the autism world to allow themselves to be held accountable to those whom they claim to serve.

Ultimately the only value in this exchange will be if it leads to improvements in the quality of life for those with autism, their families and their care givers. It is my earnest hope that this will refocus our efforts onto serving them directly.

Ginger Taylor, M.S.

Saturday: Katie Wright on Air America

"Katie Wright, the mother of an autistic son who links his condition to thimerosol, the mercury preservative in childhood vaccinations", will be interviewed on the Ring of Fire radio show on Air America on Saturday.

June 28, 2007

Autism Speaks Aint Speakin'

For the last month or so other bloggers and I have been pointing out the serious ethical problems of Autism Speaks. Last week, one of the board members, Jon Shestack, wrote a personal note to those like me who have been critical of Autism Speaks, asking for us to use restraint in our criticism and to give AS the time to answer our charges on the merits. He also called on the board of Autism Speaks to do some soul searching to see if it was time for them to change direction.

Well more than a week has gone by since then, Jon Shestack has been arguing with some in the ND crowd, but no one at AS seems to be offering the "defense on the merits" that we are supposed to be waiting for.

So exactly how long are we supposed to wait patiently?

CDC: Out of Excuses on the Autism Study that "Should be Done"

CDC: Out of Excuses on the Autism Study that "Should be Done"
Posted June 27, 2007 | 11:01 PM (EST)

A simple study of autism rates among vaccinated and unvaccinated children "could be done and should be done" to help settle the raging debate that has now spilled into the US Federal Courts.

The words of some anti-vaccine zealot? An overwrought parent lashing out at something, anything, to blame? Or perhaps a greedy trial lawyer pining for the big bucks of injured-kiddie tort.

No, these were the measured, thoughtful remarks of CDC Director Dr. Julie Gerberding, at a Washington press conference two years ago.

But Gerberding never ordered the study -- one that could silence this tiresome argument once and for all; a study that any rational person would concur "should be done."

Why not? One reason, the powerful director said, is that "very high levels of vaccination... record immunization levels," make it "very, very difficult to get an effective numerator and denominator to get a reliable diagnosis."

But maybe it's not that difficult to find an "effective numerator" (i.e., unvaccinated children) after all.

It certainly wasn't hard for the respected polling company, Survey USA, to find nearly 1,000 unvaccinated children living in nine counties in California and Oregon. All they had to do was pick up the phone.

Survey USA, commissioned by the anti-thimerosal group Generation Rescue, completed telephone interviews in 11,817 households with one or more children age 4 to 17. Of the 17,674 children inventoried, 991 were described as being completely unvaccinated.

Interestingly, the survey found that, among boys (who have neurodevelopmental disorders at a 4-to-1 ratio over girls) vaccinated children were 155% more likely to have a neurological disorder, 224% more likely to have ADHD, and 61% more likely to have autism. Among boys aged 11-18, the increased autism risk was 112%.

This survey suggests there might be a trend here worthy of further investigation. But is it hard science? Of course not, and that is precisely my point.

We need the CDC, or some other well-funded agency, to conduct a comprehensive health study of vaccinated and unvaccinated children, now, using the soundest epidemiological tools available.

And for those who think that phone surveys are a patently ridiculous way to study autism, consider this: The Survey USA methodology was based on the model that the CDC itself has employed in national prevalence studies for ADHD and autism. In fact, Dr. Laura Schieve, co-author of the CDC's two national autism phone surveys said that parent reports demonstrate "high reliability, or reproducibility."

Which brings us back to that numerator. There are clearly enough unvaccinated kids (outside Chicago there is an entire HMO-full) to finally do the study that Dr. Gerberding herself says "could and should be done."

Maybe the Survey USA poll is way off base. Maybe an actual scientific investigation, one that controls for bias and other potentially confounding factors, would show the exact opposite. Maybe, as one would hope and intuitively expect, vaccinated children are truly healthier and happier than unvaccinated children.

I hope that the CDC can prove that they are. Wouldn't that be a wonderful thing? And like I have said before, it would certainly shut up the likes of me.

Now that Dr. Gerberding no longer has the excuse that "record immunization levels" preclude such a study, perhaps she might direct some of the recently appropriated Combating Autism Act funds to studying the two groups of children.

For those that disagree -- and I look forward to your rational comments on why this study should never be done -- I suggest you take up your concerns with the CDC director herself, and not with me.

After all, Dr. Gerberding is the one who said that this study "should be done." And I, for one, could not agree with her more.

PS: This week, Rep. Carolyn Maloney (D-NY) introduced the "Comprehensive Comparative Study of Vaccinated and Unvaccinated Populations Act of 2007" (H.R. 2832). For more information on this legislation, please visit: http://maloney.house.gov

June 27, 2007

Kathy Fowler Medical Reporter for ABC7 in DC Offers Us A Good Story

In the past Ms. Fowler has produced some really balanced reports and here she does not dismiss parents concerns like most main stream media do.

Thank you Kathy.

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Offit's RotaTeq Safety Labeling Updated to Include Cases of Kawasaki Disease

Paul Offit, who believes that it is safe to inject babies with more than "100,000" vaccines at once (I emailed him to make sure he was not being misquoted, and he replied, "The figure of 100,000 is correct, and probably a little conservative."), has his vaccine labeling changed to note that it may cause Kawasaki Disease.

RotaTeq Safety Labeling Updated to Include Cases of Kawasaki Disease
Yael Waknine
Medscape Medical News 2007. © 2007 Medscape

June 19, 2007 — Changes have been made to the adverse reactions and postmarketing sections of the safety labeling for a live, oral, pentavalent rotavirus vaccine (RotaTeq, Merck and Company, Inc); it now includes cases of Kawasaki disease, the US Food and Drug Administration (FDA) told healthcare professionals on Friday.

The poorly understood disease is uncommon in children, is characterized by high fever and blood vessel inflammation, and affects the lymph nodes, skin, mouth, and heart.

During a phase 3 clinical trial, 5 cases of Kawasaki disease were reported among 36,150 infants who received the vaccine, compared with only 1 case among 35,536 who were given placebo, according to an alert sent from MedWatch, the FDA's safety information and adverse event reporting program.

Three other cases have been reported through the Vaccine Adverse Event Reporting System (VAERS) since the vaccine was approved on February 3, 2006. There is no known cause-and-effect relationship between the use of this or any other vaccine and Kawasaki disease, the FDA said, noting that the cases reported to date are not more frequent than what would be expected to occur by coincidence.

Rotavirus vaccine is indicated for the prevention of rotavirus gastroenteritis in infants and children, which is caused by the serotypes G1, G2, G3, and G4, when administered orally as a 3-dose series to infants between the ages of 6 and 32 weeks.

Healthcare professionals are encouraged to report cases of Kawasaki disease and other adverse events potentially associated with the vaccine to VAERS by going online at www.vaers.hhs.gov or calling 1-800-822-7967 for a report form.

Additional information about the use of the vaccine can be obtained by contacting the FDA’s Center for Biologics Evaluation and Research at 1-800-835-4709 or by e-mail at octma@cber.fda.gov.

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.


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
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.


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

California: Vaccine Mandate Bill to Be Heard Wednesday

California is considering a bill that would take control of the mandated vaccine schedule out of the hands of the state authorities and hand the decision making over to a federal board.

The federal boards and their symbiotic relationships with the pharmaceutical industry are what got us in this mess in the first place.

From California based Talk About Curing Autism:

California Residents - Vaccine Mandate Bill to Be Heard Wednesday
Please contact the members of the Senate Education Committee listed below and ask that they vote "no" on AB 16. You can write, e-mail, call, or show up and testify against the bill on Wednesday. Click on each name below for contact information.

California State Senate Education Committee Members:
Senator Jack Scott(Chair)
Senator Mark Wyland (Vice Chair)
Senator Elaine Alquist
Senator Jeff Denham
Senator Abel Maldonado
Senator Alex Padilla
Senator Gloria Romero
Senator Joe Simitian
Senator Tom Torlakson

AB 16 (Hernandez), the bill that, among other things, would remove the review of the public and the approval by the Legislature and Governor of all new childhood vaccine mandates for every child in California and; instead, would automatically add every new vaccine recommended by a public health/vaccine manufacturer controlled panel adding dozens of new vaccines to the already 30 doses of vaccines California children receive today. It is the most significant bill ever introduced effecting children and vaccines since 1980 when California first mandated vaccines for California's children. This bill is a horrible example of special interest legislation. In my 34 years of working in and around the Capitol it is the worst.

The bill passed the Assembly after long and contentious debate, and will now be heard this Wednesday, June 27 at 9:30am by the Senate Education Committee in Room 4203, State Capitol.

Below is a copy of the bill as well as my testimony.

-Rick Rollens

Mr. Chairman and Members:

My name is Rick Rollens. This is my 33 year of being in and around the Capitol. For 24 years I served in the State Senate in numerous positions including a chief of staff to a Senator, chief consultant to the Senate Rules Committee, creator and director of the Office of Senate Floor Analyses, and finally as Secretary of the Senate. In 1996 I resigned my post ion as Secretary of the Senate in order to dedicate my life to finding effective treatments and a cure for my beloved son Russell who suffers from vaccine induced regressive autism.

Since leaving the Senate, I have been extremely active in the autism world. Iam a co-founder of FEAT...Families for Early Autism Treatment, a co-founder of the UC Davis M.I.N.D. Institute, a Speaker's appointee to the Legislative Blue Ribbon Commission on Autism, Superintendent O'Connell's appointee to his Autism Advisory Committee, I have served as a national board member of ASA, the NIH Autism Advisory Committee, and currently serve on numerous autism organizations throughout California, the nation, and the world. My family and I have been featured in dozens of local, state, national and international media stories about autism and the autism epidemic, the crown jewel of them all is this (SHOW NEWSWEEK) cover story in Newsweek magazine that featured my son Russell on the cover and a feature on Russell's story of his decent into autism at 6 months old after receiving numerous shots at his well baby check up and immediately suffering a classic adverse vaccine reaction leading to his acquired full syndrome autism. That day changed his life and the lives of ALL who know and love him. Russell is not alone.

Today, California is adding 10 new children a day, seven days a week, like Russell to our DD system. In 1980 when California first enacted it's mandatory immunization law, autism accounted for 3% of all the intakes into our DD system. Today, autism only the fastest growing condition entering the system but now accounts for 64% of all the new intakes. In 1980 the incidence of autism was 1 in 10,000, today it is 1-150, and in some areas high as 1-84 children. Twenty years ago there were 2700 persons with autism in our system, today there are 34,000. In the past 9 months alone, we added more children with autism to our system then we did over the 16 YEAR period from 1971-1987! 886 new children in the past 3 months alone.

The most telling fact is that over 91%, or 9 out of 10 persons currently in our system were born after 1980, the year that California's mandatory immunization law was enacted. There is a tsunami of young children aged 3 to 17 years old accounting for nearly 80% of the autism population moving through the system.

I am here today to vehemently oppose AB 16. AB 16 represents an outrageous and arrogant attempt by the makers of the HPV vaccine and Vioxx, as well as those who front for them in the public health community, to strip away from the Legislature and the Governor the responsibility that has been in statute for nearly 30 years to review and approve or reject the addition of new vaccines to the mandatory childhood immunization schedule; and instead, turn over that responsibility to one and a group of their own, a non-accountable bureaucrat, the state Director of Public Health and a Committee 3,000 miles away of vaccine promoters who have yet to reject an application for adding a new vaccine to the schedule, and numerous members of which are personally and professionally conflicted for accepting research and professional funding and career opportunities from the same vaccine manufactures that are suppose to be regulating. Their behavior and actions have become subject to Congressional investigation and review.

AB 16 as introduced would have added Merck's HPV vaccine to the mandatory schedule. After extensive public hearing and debate in the Assembly Health Committee, it was clear that there was little support to approve the bill and the author refused to even let the bill come up for a vote. This was the second new vaccine that has been rejected by the Legislature in the past five years. I guess enough was enough in the minds of the vaccine manufacturers and their followers. The bill was subsequently gutted and amended the bill to include the provisions before you today.

Keep in mind, that today in California children receive up to 30 doses of vaccines by the age of 6 years old, most of which are administered starting moments after birth through the first two years of life when healthy brain development is most important. If the provisions of AB 16 had been in effect during this current decade, the number of doses of vaccines our children would have been subjected to would have increased to 40 doses. Throughout the country,including right here at the M.I.N.D. Institute,dozens of research projects are currently underway examining the connection between the immune system, vaccines, and autism.

And lastly, be aware that there are over 300 new vaccines currently in development and in the pipeline, including vaccines for such things as nicotine addiction, diarrhea, mononucleosis, cocaine, mehamphetamine, and stomach ulcers. These vaccines, as well as vaccines currently in use today contain such potent toxic and poisonous agents as mercury, aluminum, formaldehyde, aborted fetal tissue, MSG, live viruses, and killed bacteria. Mr. Chairman and Members, the system we have in place today has served us well for nearly three decades. You and your constituents and future members of the legislature and their constituents have a real say in the very serious issue of what new vaccines are added to MANDATORY childhood immunization schedule. There is sunshine in the current process, this bill takes away the sunshine away and replaces it with a wink and a nod by unaccountable bureaucrats and members of a Committee that have not seen a vaccine they can say no to.

On behalf of the children and their families of today, and the children yet to be born, please reject this horrific proposal. Keep this process in the hands of the people's representatives, do not hand over the future of our children's very health to those who would profit both personally and professionally by approving this bill. Please vote no. Thank you.

Click here to read the full text of the bill.

Dan Burton Addresses Congress on the Vaccine Hearings

Not quite sure how I missed this one.

"I believe the families of these autistic children deserve to be compensated for their vaccine injury as Congress intended when it created VICP. I believe the science is there to prove this case and I am hopeful that the court will agree and at the end of this arduous process these 4,800 families will finally get justice."

When a respected republican congressman who held vaccine/autism hearings stands on the floor of the house and lists some research studies that support the vaccine/autism hypothesis, how the heck does the media get away with going on the air and repeatedly saying, "No Link"?

TUESDAY, JUNE 19, 2007

• Mr. BURTON of Indiana. Madam Speaker, I rise tonight to talk about the Omnibus Autism Hearing which started on June 11, 2007, down at the U.S. Federal Claims Court here in Washington, DC. At issue are the 4,800 claims against the National Vaccine Injury Compensation Program filed by parents of autistic children who believe, as I do, that thimerosal--the mercury-based preservative in vaccines--caused their children's disorders.

• There are many people in our health agencies, in the pharmaceutical industry and here in Congress who say that there is no the scientific evidence linking thimerosal and autism. However, during my tenure as chairman of Government Reform Committee (1997-2002), and as chairman of the Subcommittee on Human Rights and Wellness (2003-2005), I chaired numerous hearings examining the alarming increase in autism in this country over the last several decades. In the 1980s, roughly one in 10,000 American children was diagnosed with some kind of autism spectrum disorder. Today that number has risen to 1 in 150. I believe, as do many credible scientists and researchers, that the clear correlation between the dramatic rise in the number of autism cases, and the rapid expansion of the childhood vaccination schedule during that 20-year period, points to the mercury-based preservative thimerosal--routinely used in pediatric vaccines during the period--as a contributing factor to our country's literal epidemic of autism. In fact, I firmly believe my own grandson became autistic after receiving nine shots in 1 day, seven of which contained thimerosal. In fact, Dr. Bernard Rimland--founder and director of the Autism Research Institute--testified before the committee that classic autism, (noticeable from birth) has largely been replaced by late-onset or ``acquired autism''; a form of autism in which children are born normally developing but later regress into autism in the second year of life. He was one of the first to point to environmental insult through vaccine injury as a possible leading contributing factor.

• The truth is that since the initiation of my vaccine investigation, two schools of science have evolved leading to two very different conclusions. The first, largely funded by the Centers for Disease Control, consist of epidemiological evaluations in Denmark that look at medical files in individuals who developed autism and deciding whether or not thimerosal exposure was more predominant in the autism patients. Those who have focused solely on the epidemiology research have concluded that there is no relationship between vaccine injury and the onset of autism. However, once published, these studies were discovered to have many methodological flaws. For example, using individuals in Denmark did not provide a true comparison to the U.S. vaccine schedule, and by the CDC's own admission, the study could not really provide any true conclusion as to whether or not a subset of the population--because of vaccine exposure to mercury or some other vaccine injury--developed autism.

• The second school of research has conducted so-called ``hard'' science; providing objective measures through laboratory and animal research. For example, Dr. Hornig at Columbia University replicated the thimerosal exposure in vaccines in a mouse study and discovered mice exposed to thimerosal had both behavioral and biological responses--displaying autism like behaviors and exhibiting white matter changes in the brain that were measurable. Other laboratory research has shown that thimerosal exposure affects the protective sheath of the neurofibrals in the brain as well as the IGF-I molecule. And Dr. Jill James at the University of Arkansas has shown that thimerosal exposure affects the methylation process--the mechanism used to regulate genes and protect DNA from some types of damage.

• The most recent hard science study to be published is from Dr. Burbacher, a leading expert on mercury, who investigated the different affect methyl mercury and ethyl mercury had on primates. He found that ethylmercury--the form of mercury in thimerosal--stays in the brain (doing more harm) than methylmercury.

• The bottom line is that mercury is a base element and the most toxic substance known to science outside of radioactive materials; and each of these hard science studies, and more, show that it is biologically plausible for mercury exposure in vaccines to cause the onset of autism and provide tantalizing pieces in the puzzle about how.

• My support for the link between thimerosal and autism, especially in open congressional hearings has caused many people to throw around the accusation that I am ``anti-vaccine.'' My response to that is that vaccines are the only medications that are mandatory for Americans to receive and as such we have an even greater obligation to ensure that they are as safe as possible. In addition, experience tells us that, as with any other epidemic, while there may be underlying genetic susceptibilities, there usually is some type of environmental trigger as well, such as a virus, fungus, exposure to heavy metals, pollutants, or whatever. There has never, to the best of my knowledge, been a purely genetic epidemic. So, genetics alone simply cannot explain how we went from 1 in 10,000 children with autism spectrum disorders 20 years ago to 1 in 150 today.

• No one has ever identified a positive health benefit to mercury in the human body. Thus, it was sound public health policy to eliminate mercury from thermometers, blood pressure gauges, light switches, cosmetics, teething powder, horse liniment, hat-making materials, smokestack emission, and mining operations. It would also be sound public health policy to eliminate mercury from all vaccines.

• But Madam Speaker, getting the mercury out of all vaccines is only the first step. We also have a responsibility to help all of the children who have already been injured by mercury in vaccines. That is why the outcome of the Omnibus Autism Hearing is so critically important. In the 1980s, Congress creating the Vaccine Injury Compensation Program to shield medical professionals and vaccine manufacturers from liability if an individual suffered an adverse event from receiving vaccines. The compensation fund, which currently contains about $2.5 billion, is financed by a tax on pediatric vaccines. We created VICP to protect the vaccine supply and to insure that all who were injured by a vaccine would receive compensation in what was supposed to be a no-fault, easy to use manner. Congress intended for families to be compensated quickly and fairly; and when the evidence was close as to whether or not the medical condition in question was vaccine related or not--as is the case with thimerosal--the court should always err in favor of the injured. But over the years the system has broken and what was supposed to be quick and fair has become slow and contentious; which is why today 4,800 families are fighting in court to be heard. They have waited a long time for their day in court and I am pleased that the court is providing the transcripts online quickly and that audio streaming on the internet is being provided for the thousands of families who are not able to travel to Washington and actually be in the courtroom during the proceedings.

• As the Omnibus hearings proceed, I hope that all of the evidence regarding vaccine injury will be received by the courts and given a full and fair review. I believe the families of these autistic children deserve to be compensated for their vaccine injury as Congress intended when it created VICP. I believe the science is there to prove this case and I am hopeful that the court will agree and at the end of this arduous process these 4,800 families will finally get justice.

Harvard: Chronic Illness Four Times Higher for Our Kids than For Us

They also get three to four times the number of vaccines that we did.

Children Sicker Now Than in Past, Harvard Report Says (Update1)
By Angela Zimm

June 26 (Bloomberg) -- The number of American children with chronic illnesses has quadrupled since the time when some of their parents were kids, portending more disability and higher health costs for a new generation of adults, a study estimates.

An almost fourfold increase in childhood obesity in the past three decades, twice the asthma rates since the 1980s, and a jump in the number of attention-deficit disorder cases are driving the growth of chronic illnesses, according to researchers at Harvard University in Boston. The report is published in a themed issue of the Journal of the American Medical Association focusing on children's health.

Doctors and public health officials should be bracing for a wave of chronically ill young adults with weight-related ailments that include diabetes and heart disease. In 1960, just 1.8 percent of U.S. children and adolescents were reported to have a chronic health condition that limited their activities. In 2004, the rate rose to 7 percent, researchers said.

``We will see much greater expenditures for people in their 20s than we ever saw before, and no one is thinking how we should prepare for that,'' said James Perrin, professor of pediatrics at Harvard Medical School and the report's lead author, in an interview. ``We call it an epidemic. It's certainly worrisome and we look at it as a call to action.''

The journal's reports also included findings that family- based weight-management programs work best, that white children have the highest rate of diabetes, that childhood cancer survivors face risks for serious health problems when they become adults, and that children with serious illness are more likely to die at home than in 1989.


About 18 percent of children in the U.S. are obese, up from 5 percent in 1974, the study said. Obesity accounts for about 10 percent of U.S. health costs. Doubling the rate of obesity could add more than $100 billion a year in costs, researchers said.

``An estimated 60 percent of 5- to 10-year-old obese children already have one associated cardiovascular disease risk factor, and more than 20 percent have two or more risk factors,' researchers said in the report.

An estimated 9 percent of children have asthma, twice the rate it was in the 1980s. The breathing disorder persists to adulthood in about a quarter of children.

Attention deficit hyperactivity disorder, not recognized as a medical condition in 1968, is now diagnosed in about 6 percent of school-age youngsters. Research suggests that half of children with ADHD continue to have it as adults.

Environmental, Social Changes

While genes may play a role in obesity, asthma and ADHD, environmental and social changes are behind the surge, researchers said. Modern life has brought increased fast-food diets, more time spent indoors watching television or playing on the computer, as well as dwindling community and family support.

An association between asthma and obesity supports the theory that sedentary behavior diminishes lung function, researchers said. With more time indoors, children have increased exposure to indoor allergens.

Too much television has also been associated with increased risk for ADHD, as well as parent absenteeism, researchers said.

Also in this week's JAMA, a study found that inner-city black and Hispanic children who participated in a weight-loss program involving their parents were able to control their weight better than those who received traditional weight-loss counseling in a clinic. While the children in the family-based program had maintained their weight and cut their diabetes risk after a year, those who got just counseling gained weight and some developed signs of increased diabetes risk.

`No One Culprit'

``In childhood obesity, there is no one culprit,'' said Mary Savoye-Desanti, a Yale University dietician and the study's lead author. ``Children are alone after school. They're not supervised, so they're overeating and not doing activities. Food is more accessible than it ever was.''

Researchers are seeing increasing disparities between race, ethnic and socioeconomic groups among the three main drivers of childhood chronic disease. Black children have asthma rates that are 60 percent higher than white children. ADHD is higher among children from low-income households.

``These three conditions -- obesity, asthma, ADHD -- overwhelm all other chronic conditions,'' Perrin said. ``The life of the family practitioner is very different than it was. Far more children come in with the type of chronic health problems we hardly thought about 35 years ago.''

Researchers at the University of Colorado in Denver reported in the journal that non-Hispanic white youth have the highest rate diabetes among U.S. children. Most of the cases are type-1 diabetes, a form in which people must take insulin every day because their bodies don't produce the hormone, which is needed to convert sugar, starches and other food into energy.

Type-1 also reflects higher genetic susceptibility in this group, said the study's lead researcher, Dana Dabelea, associate professor of preventive medicine at the University of Colorado Health Sciences Center in Denver, during a press briefing today.

Diabetes Rates

The rate for the disease among children under 19 years of age was 24.3 per 100,000 person-years, a designation derived by multiplying the number of individuals in the study by the number of years of follow-up per person. The rate was highest among children 10 to 14 years old, and slightly higher among females, the study found.

White children had a 26.1 rate, blacks were at 25.4, and American Indian youths scored 25, the study said. American Indian youth also had the highest rate of type-2 diabetes, in which the body can't produce enough insulin or use the insulin it makes.

The journal report also included research that said the percentage of children with complex chronic conditions who die at home, rather than in a hospital, has increased to 18.2 percent in 2003 from 10.1 percent in 1989. The study was done by researchers at Children's Hospital of Philadelphia.

The odds of death occurring at home increased by 3.8 percent annually, a change the researchers said may be occurring because of advances in medical technology in the home setting and broad shifts in attitudes and decision-making processes regarding end-of-life care.

To contact the reporter on this story: Angela Zimm in Boston azimm@bloomberg.net .

Living in Kansas and Unhappy With ASD Services?

Then show up and make your voice heard.

SRS Holding Statewide Autism Forums
Posted: 9:51 PM Jun 26, 2007
Last Updated: 10:50 PM Jun 26, 2007

The Kansas Department of Social and Rehabilitation Services is looking for public feedback on a plan to help families dealing with autism.

Topeka hosted the first of three autism forums Tuesday night.

SRS is getting input from stakeholders before submitting the formal application for its Autism Waiver program, which would allow Autistic children into early intervention services.

Louise Heinz is a parent of an autistic child. She supports the program because of what it's meant to her and her family. "My daughter did not speak until she started the Early Intensive Intervention and now she does. What we're trying to promote is there can be great gains made from early intensive intervention. We want all kids on the Autism spectrum to be able to have access to this waiver and therefore, the intervention."

SRS hopes to get federal funding for the program from the Center for Medicaid Services.

SRS will hold a forum on Autism Wednesday in Hays from 6 to 8 p.m. at Developmental Services of Northwest Kansas, 2703 Hall St. Thursday's forum will be at Wichita's Independent Living Resource Center, 2022 W. 2nd St.

Early Intervention HCBS Autism Waiver Program
Children will be able to enter the Waiver program from the age of diagnosis through the age of five.
A child will be eligible to receive waiver services for a time period of three years.
To be eligible for Autism Waiver services, the child must receive a diagnosis of Autism per the current DSM or ICD9 criteria from a licensed Medical Doctor or Ph.D. Psychologist and be assessed for a Level of Care Determination to establish functional eligibility for Waiver services.
Waiver services:
-Eligibility Determination: Eligibility Specialist assesses the child for the Level of Care Determination.
-Respite Care: Respite Care provides temporary direct care and supervision for the child to provide relief to families/ caregivers of a child with an autism spectrum disorder.
-Parent Support and Training: designed to provide the training and support necessary to ensure engagement and active participation of the family in the treatment process and with the ongoing implementation and reinforcement of skills learned throughout the treatment process.
-Intensive Individual Supports: Services provided to a child with an autism spectrum disorder designed to assist in acquiring, retaining, improving, and generalization of the self-help, socialization, and adaptive skills necessary to reside and function successfully in home and community settings.
-Consultative Clinical and Therapeutic Services: Sercives provided by an Autism Specialist to assist the family and paid support staff or other professionals with carrying out the individual program that supports the child's functional development and inclusion in the community.
-Family Adjustment Counseling: Counseling provided to the family members of a child with an autism spectrum disorder in order to help them cope with the child's illness and the related stress that accompanies the initial understanding of the diagnosis and the ongoing continuous, daily care required by the child with an autism spectrum disorder.

Handley: America, Meet Our Unvaccinated Kids

J.B. Handley introduces America to its unvaccinated children today on the Rescue Post.

In this post he offered the data from the Generation Rescue Survey released today that shows that vaccinated children have a 2.5 times higher risk of developing a neurodevelopmental disorder like autism as compared to non vaccinated children.

America, Meet Our Unvaccinated Kids
By J.B. Handley

For the first time ever, we know something about them that may help our kids.

Yup, they live right down the street from you, they are 5.6% of the population, and they have less asthma, less ADHD, and less autism than our kids seem to have. At least according to our survey.

Do we expect you to believe us? Not really. Not if you’re a member of the mainstream media or the mainstream medical establishment. But, we really hope you will look at our data. Because today, unlike the CDC, we are making all of our data public simultaneously with the release of our survey. Crunch away, and decide for yourself.

We followed a very straightforward process, so anyone can retrace our steps. We told a market research firm what we wanted to know. They designed a questionnaire they felt would get us an answer. We approved the questionnaire. They ran the survey and sent us the data, which you can now access. Decide for yourself.

Some of the numbers really jump out, particularly amongst the boys. A “Risk Ratio” is a way to compare prevalence, so that if 10% of vax kids and 5% of unvax kids have ADHD, the Risk Ratio is 2.0, or a 100% difference. Risk Ratios above 2.0 tend to be allowed in a court of law to show correlation. We found many Risk Ratios well in excess of 2.0, and some higher than 4.0, the equivalent of a 300% difference. Decide for yourself.

Have we proved anything today? Yes and no. We’ve proved that unvaccinated kids are easy to find, and that a straightforward survey yielded some disturbing results. What we haven’t done is design a study with enough scale and controls to be published in a first-tier, peer-reviewed journal. But, we’ve certainly highlighted the screaming need for such a study to happen.

So, now what?

Everyone should write Dan Olmsted and thank him for his Age of Autism series from UPI. He’s the one who asked about unvaccinated kids first, and asked it loudest. He even asked Julie Gerberding, CDC Director. He just kept on asking it until we got so tired thinking about what an obvious question it was that we did something about it.

Our data should be scrutinized, analyzed, challenged, and debated by any and everyone in the autism community who cares to do so. (If you want a copy of the Excel spreadsheet with the primary data in it, email me and I will send it to you.)

Everyone and their grandmother needs to cajole their Congressperson to jump on the bandwagon and support Carolyn Maloney's Bill to study unvaccinated children.

This incredibly brave Congresswoman from New York said in a press release yesterday: “What is ultimately needed to resolve this issue one way or the other is a comprehensive national study comparing outcomes between vaccinated and unvaccinated children. As the most scientifically advanced country in the world, we should be jumping at the chance to conduct a comprehensive national study to resolve the questions that have been raised. Parents deserve answers, and children deserve no less than absolutely certainty and safety.”

The autism community should pull together and fund our own independent study, in addition to the Maloney bill, to gather as much data as quickly as possible. Autism Speaks, with the biggest war chest, should take this opportunity to fund or lead the funding for such a study, and help put this issue to rest once and for all. It would be a great opportunity for them to repair a badly burned bridge with many of us, and I hope they jump at the chance. The study must be run by researchers who have no history in this fight, on either side of the argument, and it must have the scale and controls to achieve wide acceptance through journal publication.

As for me, nothing much changes. My son is getting better, and we think the road map drawn by considering him “vaccine injured” is why. Knowing cause is so incredibly important to figuring out how to help and treat our kids, and I’m grateful for the pioneers who have been demanding answers for years. My wife and I hope, in some small way, that this survey moves things forward, and creates a deafening demand from parents for more answers. Now.

J.B. Handley is co-founder of Generation Rescue.

Dr. Laidler on Nightline

Last night Nightline did a piece on the Geiers and Lisa Sykes, and interviewed Dr. Laidler, a doctor and autism parent who disparages biomedical treatment for autism.

Two years ago I wrote a critique of an article written by Dr. Laider that was critical of chelation. I submitted it to him and asked for him to comment on it, but I did not hear from him again.

The obnoxiously redundant point of my critique is that there are lots of questions about autism and chelation that the CDC should really look into. This was two years ago and still no studies from the CDC, despite the fact that children are recovering through chelation. However some how Julie Gerberding still believes that she is credible and convincing when she says that "CDC recognizes that parents want answers," adding, "We share their frustration at not having more answers about the causes and possible cure."

Because I had not heard of Dr. Laidler's involvement in the autism debate any more I had not tried to get a response from him, but since he is appearing on Nightline, I am assuming that he is available to comment. If he would like to respond to my critique I would still welcome the discussion.

Reposted from 2005, File under: Things That Call For A CDC Study:

Chelation & Autism
Jul 27, 10:41 AM [2005]
by James R. Laidler, M.D.

Can chelation help autism?

Chelation is a legitimate medical therapy for disorders caused by an excess of certain metals. Copper, iron, mercury, arsenic and lead are all metals that can cause toxicity disorders that are successfully treated by chelation. Since about 1985, when the idea that autism might be caused by mercury poisoning first arose, many practitioners and groups have promoted chelation as a treatment for autism.

Clearly, the first question that must be settled is whether autism is caused by mercury (or other metal) toxicity—if it is not, then there is no point in treating it with chelation. Unfortunately, this question has become one of many “hot topics” in autism, with much heat and emotion obscuring the scientific data. The first step, then, is to look past the emotion and political maneuvering and examine the data.

When it was first proposed, the idea that autism might be due to mercury poisoning showed a good deal of promise. After all, mercury is a well-known neurotoxin and, additionally, was used as a preservative (thimerosal) in the vaccines children received. With a degree of biological plausibility and a known exposure, the next step was to look for epidemiological data.

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?

Unfortunately, well-designed studies take a while to complete and publish.

Well designed studies do take time to complete and publish.

This is further delayed that by the fact that health authorities are neither attempting to complete or publish them. Despite years of parents requests, the public health authorities have not yet begun to design, fund or even discuss studying the effects of thimerosal on developing children, nor the safety and effectiveness of chelation on autistic patients.

[Update: I have heard that there are 2 government funded studies getting underway on the effects of thimerosal. I will try to find them and confirm exactly what they are. Still no govenment funded chelation/autism studies.]

Thimerosal was invented in the 1920’s and it’s only safety test was carried out in 1930 on 22 patients with terminal meningococcal meningitis. Patients were followed for several days until their deaths. No long term health problems were noted in the study because the patients had no long term health.

When the FDA was created, thimerosal was grandfathered in and has never been safety tested it to this day despite the fact that it has been implicated in toxic illness every few years going back to 1947.

I will be repeating this point through out my critique of this paper.

This delay left an information vacuum that a number of people immediately began to fill with assertions that autism definitely was or certainly was not caused by the thimerosal in vaccines. This did not make any progress toward settling the question, but instead polarized the issue before the arrival of any real data.

Lurking in the background, undetected in the tumult, were data that could have pointed the way. At least two countries—Canada and Denmark—had removed thimerosal from their vaccines in the 1990’s (Canada 1994, Denmark 1992) and yet had both experienced rises in autism prevalence similar to those in the US and UK.

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 study is further compromised by the fact that several of the coauthors were employed by the Statens Serums Institut, the government owned vaccine manufacturer who would 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.]

Finally, 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 given over a longer period of time.

Further, American children are subject to an autism rate at least 10 times that of Denmark. It seems to me to be like doing a study of Sickle Cell Anemia in Denmark and applying it to the population of Baltimore. Clearly children here have some other intervening factor that increases the threat, be it genetic, environmental or even the thimerosal dosage.

As for Canada, I have seen this mentioned in several places, but I have never seen the actual study. If you have it or know where I can find it, can you please email me so I can look at it? Thanks in advance.

Update: Shannon from British Columbia reports that there is no Canada study or even any Canada data to be studied. She reports that they don't keep track of autism rates and don't offer services. She also reports that thimerosal removal from vaccines was left up to the provinces and that many are still on the shelves. See her comment in the section below for a more detailed explanation.

Additionally, while the childhood vaccines in the US included three (DTP, HiB, HepB) with thimerosal, in the UK, for the past two decades, only the DTP vaccine contained thimerosal. This meant that, despite having a constant thimerosal exposure for nearly twenty years, children in the UK experienced the same rise in autism prevalence.

In 2003, the first study, from Denmark, showed that the prevalence of autism in that country had risen steeply even though thimerosal had been removed from vaccines in the early 1990’s. This study was greeted by howls of outrage from some that advocated the connection between thimerosal/mercury and autism—the authors were roundly disparaged and their integrity and objectivity were impugned. This did not change the fact that the autism prevalence in Denmark has continued to rise, following the same pattern as autism in the US and the UK.

In September 2004, a study from the UK showed no association between thimerosal exposure and autism . At the same time, a review of ten epidemiological studies of autism and thimerosal found that the few studies that found an association between thimerosal exposure and autism had serious methodological flaws. Chief among these flaws was using the Vaccine Adverse Event Reporting System (VAERS) as a source of data.

The chief problem with the VAERS data is that reports can be entered by anyone and are not routinely verified. To demonstrate this, a few years ago I entered a report that an influenza vaccine had turned me into The Hulk. The report was accepted and entered into the database.

Because the reported adverse event was so… unusual, a representative of VAERS contacted me. After a discussion of the VAERS database and its limitations, they asked for my permission to delete the record, which I granted. If I had not agreed, the record would be there still, showing that any claim can become part of the database, no matter how outrageous or improbable.

Since at least 1998 (and possibly earlier), a number of autism advocacy groups have, with all the best intentions, encouraged people to report their autistic children—or autistic children of relatives and friends—to VAERS as injuries from thimerosal-containing vaccines. This has irrevocably tainted the VAERS database with duplicate and spurious reports.

I think that it is clear that the VAERS is a poor source for such studies. The CDC’s Vaccine Safety Datalink is a much better source, but the CDC has blocked it from being reviewed by independent researches despite the fact that congress has directed it to do so and claims that disallowing such access is a violation of federal law. The one team granted access in 2003 was severely limited in what they could do and thus their research effort, although it found a dramatic link, was completely tainted by the process and seems to me somewhat of a false start.

The CDC claims that they welcome research applications, but at last check they had not accepted any.

Testing for mercury

What, then, about the parents who have tested their children and found their mercury levels high? These children may have a legitimate problem with mercury poisoning…if the testing is valid. While laboratory accuracy—and cost—is an issue with many of the “mail-order” labs, a more serious problem is the manner in which the specimen is collected.

Dr. Laidler seems to be saying that contamination during collection and overnight shipping can skew results, but I don’t feel that he has properly addressed the possible process by which mercury would begin to appear in urine samples that had none at the time of excretion.

Many practitioners who advocate chelation routinely use “provoked” or “stimulated” excretion studies. To do this, they administer a dose of a chelating agent (more about them later) and test the urine a few hours later. This practice will routinely and predictably elevate the urine mercury level to several times the “unprovoked” or “unstimulated” level.

What is not mentioned in this discussion of “provoked” excretion studies, is the context in which the study becomes valuable. The working theory in this case is that some autistic children are actually members of a sub-set with a genetic impairment to excrete heavy metals such as mercury. Straight forward blood, urine and hair tests for mercury that would identify mercury toxicity in typical subjects who have been victims of a large mercury exposure would be useless in identifying mercury toxicity in people who have no ability to excrete mercury.

In order to find out if these types of subjects have mercury in their tissue, it must be stimulated. If it is excreted in the urine after the introduction of a chelating agent, then it was present in the body tissue.

Since the normal values listed on the laboratory report are for “unprovoked” specimens, the results will be much higher than normal and can appear alarming.

“Normal values” seem to mean little in these results. When mercury is excreted during a DMSA challenge, it cannot be taken as a true measure of how much mercury is in the tissues. Like clowns coming out of a car, you don’t know how much is in the body until you count all of it when it comes out.

Several factors complicate a getting a true picture of how much is in the body, one being that DMSA binds to lead more readily than to mercury, so if lead is present, the mercury level may be artificially depressed.

Doctors have reported patients excreting up to three and four hundred times the mercury that the baseline showed on the initial challenge.

The only thing that can be said with much certainty is that if you give a chelating agent, and mercury comes out, then it was in there and treatment should continue until it stops being excreted.

The cost of many of the mail-order labs is also a significant concern. A brief survey of some of the bigger mail-order labs revealed that they charge between $175 and $300 for a “panel” of urine metal tests, including mercury. The local hospital lab charges $35 for a urine mercury test.

Being a parent that has paid $300 for such urine metal tests, I am all for lowering the price. However, if I woulda known then what I know now, that the first time I did such a test on my son I would find mercury and lead, and that the chelation we have done as a result would help my son make the progress that he has made, I would happily sign my car over to the lab that delivered me these results.

But that's just me.

[scarcasm alert]I believe a good way to lower the costs of the test in this free market, would be many labs offering this standardized test, and doctors regularly screening children with ASD, ADHD, verbal and developmental delays, and those who have exhibited symptoms of vaccine injury after thimerosal containing vaccines, for mercury poisoning. That might be something that the government could look into.

In most cases, the other metals included in the “panel” or of little or no use—there is no research or clinical data that connects some of these other metals to any disorder whatsoever.

I need more information from Dr. Laidler on this point. Does “no clinical data” mean that studies have been done and no connection has been found, or that no studies have been done?

Another questionable practice is the use of fecal mercury levels. The mercury in feces is a combination of ingested mercury (minus the amount that was absorbed) and any mercury excreted into the feces (usually in the bile)—there is no way to truly know how much mercury is being excreted without knowing the amount ingested and the amount absorbed. One thing that is certain, however, is that the fecal mercury level will be higher than the actual amount of excreted mercury, because of the mercury in the food we eat, the water we drink and the air we breathe.

I don’t know any families who have relied on fecal mercury levels in order to make a decision on whether or not to chelate, nor have I read of doctors relying on them. It seems an inaccurate measure of mercury toxicity for all the reasons you mention. Can anyone point me towards a source that recommends relying on it so I can further look into this?

This brings us (at long last) to chelation.

Chelation—what it is and how it works

Chelation works by using a compound has a stronger attraction (affinity) for mercury than the tissues of the body. Since mercury has a very strong affinity for sulfur, all the effective mercury-chelating agents contain sulfur. This does not mean that any sulfur-containing molecule can act as a chelator, since body tissues also have sulfur-containing components, which are what the mercury binds to. An effective chelator needs to have a higher affinity than body tissues.

This simple fact eliminates some of the compounds that are being touted as chelating agents for mercury. Glutathione, for instance, which has a sulfur-containing amino acid, is not sufficiently greater in its affinity for mercury than the body tissues to be an effective chelator.

The role that glutathione may play in autism is still emerging. Just a few months ago a study was released that found that 80% of autistic test subjects had some degree of glutathione depletion. After reading this I began supplementing over the counter oral l-glutathione and his speech began to progress more rapidly. He went from taking several minutes to put together a simple three word sentence, to spontaneous three and four word sentences in the matter of two months, and a week ago he began pointing things out to me (with his finger), saying, “look, look. Rain”.

I am genuinely interested to know specifics about exactly what it is doing and why such a weak chelator would be so helpful to him. I am looking forward to the question being studied further by federal health authorities.

Another widely used chelating agent, EDTA, not only has little affinity for mercury, but is also not absorbed when taken orally—it must be given intravenously.

There is now a product call Detoxamin that is EDTA in suppository form. Is this well absorbed form? Just curious.

The two agents that are most effective for chelating mercury are 2,3-dimercaptosuccinic acid (DMSA) and 2,3-dimercaptopropane-1-sulfonate (DMPS)
. DMSA has been widely used in the US—primarily for lead poisoning—and has a good safety record.

I am grateful to Dr. Laidler for pointing out that DMSA has a good safety record and is the standard treatment for lead poisoning. I have read many poorly researched reports that claim that all chelation is dangerous and it is quite frustrating.

DMPS has a long history of use in the Soviet Union, but has more toxicity problems. DMPS is popular with some practitioners because it causes a very large rise in mercury excretion, primarily by prompt clearance of kidney mercury stores, making it very useful for “provoked” mercury testing.

DMPS is not approved by the USFDA for any purpose, primarily because it offers no medical advantages over DMSA and is more toxic. Both can be given by mouth, but only DMPS is available in an intravenous form. Given that there is little or no difference in their effectiveness, a practitioner who wants to use DMPS should be viewed with suspicion.

In my experience, this is becoming more generally agreed upon in the autism community, although there are some doctors that have used EDTA and DMPS. I think that the trend seems to be coming back around to the use of DMSA.

The sulfur-containing groups in DMSA (there are two) are mercaptans, relatives of the odorant that is put in natural gas to make it smell bad. In short, it stinks. This can be a problem not only for the child who has to take it, but also for the entire family, as urine that contains DMSA will also have a foul, sulfurous smell. While some manufacturers claim to have overcome the smell “issue”, if the urine doesn’t smell foul, there is no DMSA being excreted and, therefore, no chelation happening.

While it is true that a sulfur odor does present itself, it has never occurred to me that it was a ‘problem’ or even something that a parent might take into account when deciding whether or not to chelate a child with mercury poisoning. Changing diapers more often or airing out the bathroom is little price to pay for a chance to get back your healthy, thriving child.

I did read about one family whose son carried an incredibly strong, unpleasant odor at all times during the first 6 weeks of his chelation. They lived with all the windows open and joked about all the stinky toxins that he was shedding.

They seemed really happy to have his odor problem replace their little boy’s autistic symptoms.

One preparation that deserves comment is transdermal DMSA (or DMPS)—a cream or ointment that is rubbed onto the skin, presumably to chelate mercury. Both DMSA and DMPS are highly water-soluble and do not dissolve well in fat or oil, which means that they most likely won’t be absorbed through intact skin. It is interesting to note that none of the individuals or corporations selling this preparation has—to my knowledge—performed the simple test necessary to prove that it is absorbed. In the absence of this simple bit of data, it must be assumed that it is not absorbed.

Lipoic acid—a sulfur-containing fatty acid—has also been touted as a chelating agent, although its effectiveness has not been well studied. It has the advantage of being considered a “natural” substance, but the few studies that have examined it have found it less effective than DMSA . It is fat-soluble and can potentially cross the skin, but this has not been tested. Its fat-solubility may (or may not) allow it to penetrate the brain tissue better, but this has also not been demonstrated.

Many doctors use this in conjunction with or following DMSA chelation because of its presumed ability to better penetrate into the brain. We have found adding ALA to our son’s chelation accelerated his progress.

Dr. Laidler again notes that ALA has not been tested. I would like to note that parents have been requesting chelation studies be conducted or funded by the national health authorities to no avail.

A number of naturopathic remedies claim to remove mercury and heavy metals, but this claim is often based on the parent plant’s ability to remove mercury from the environment. As a result, these naturopathic remedies may themselves have a high degree of mercury contamination. At any rate, none of the naturopathic “chelating agents” have been tested to support their claims. In the final evaluation, only DMSA offers the combination of safety and effectiveness that would warrant its use. DMPS is a close second, limited only by higher toxicity.

Safety of chelation

Common less serious side effects of DMSA include nausea, vomiting and diarrhea. Skin rashes have also been reported—these are often erroneously referred to as “mercury rashes” and attributed to the removal of mercury. Regrettably, the same rashes are seen in people who have no mercury toxicity and are merely due to a drug reaction. A rare and unpredictable reaction (and potentially lethal, if not treated promptly) is Stevens-Johnson Syndrome, a severe drug reaction that presents with lesions on the skin and in the mouth and gastrointestinal tract.

My son, like many autistic children with intestinal yeast, can have an increase in hyperactivity while on oral DMSA, so rounds of chelation are spaced out so that a healthy gut can be maintained. Such breaks in chelation also allow for mineral supplementation to assure that the body is not stripped of necessary nutrients during chelation.

No significant adverse drug interactions have been reported with DMSA, but most of the children who received DMSA for lead poisoning were not taking other medications—and most of this experience predates many of the medications used
for autism. Increased zinc and copper excretion has been noticed in animal studies, but this is apparently easily corrected by moderate zinc supplementation. Copper supplementation is generally not needed.

The more serious side effects of DMSA are primarily bone marrow suppression and liver injury. In the thousands of children who received DMSA for lead poisoning, somewhere between 1% and 3% developed either elevated liver enzymes (a sign of liver cell injury), low white blood cell and/or platelet counts (a sign of bone marrow suppression) or both. In all cases, these abnormalities resolved after DMSA was stopped. However, these children were being monitored with frequent blood tests and received treatment for less than three months.

There is a danger that long-term use of DMSA without close monitoring could lead to irreversible bone marrow or liver damage. This has not yet been reported, but is a compelling reason to limit the duration of DMSA therapy and to have blood tests done every one to three months. The safety of DMSA—taken for less than six months—is well-established, but this safety has not been demonstrated over the long-term.

DMSA is available only by prescription and should only be administered under a doctor’s care for just such reasons. Unfortunately, so few doctors are treating autistic patients, for what is ultimately a medical disorder, there are just not enough good doctors to go around.

[UPDATE: Apparently you can get DMSA with out a perscription, which seems odd to me. IMO it should be only used under a doctors care.]

Also... long term studies of chelation should be undertaken by the CDC... but you knew I was going to say that.

Finally, there are as many dosing schedules for DMSA as there are practitioners who make claims about it. As perhaps a ridiculous extreme, one practitioner has asserted that DMSA must be given every two to three hours around the clock! This person also insists that failure to follow this schedule will result in more mercury being deposited in the brain. Fortunately, this is absolutely wrong! Doses as infrequent as once a week have been effective at removing mercury and lead, although at a much slower rate than the recommended dosing schedule of three times a day.

Until the mercury/autism connection is properly studied and the results are treated with honesty and transparency, chelation for children diagnosed with autism will remain to be part science, part guesswork. Yet another reason that the health authorities should do its due diligence and investigate chelation as a treatment for autism related mercury poisoning.


[1] Is autism due to mercury?

There is no convincing data supporting a link between mercury or thimerosal and autism. This is not to say that mercury and thimerosal cannot cause autism, just that there is no data to support the connection.

To say that there is "no data to support the connection" is not correct. There is a great deal of data, but the data is not conclusive. It consists of in vetro studies, primate and rodent studies, case studies and small population studies.

Many authors and investigators can still make the point, as Dr. Laidler does, that there is “no convincing data” because the health authorities charged with funding and disseminating such studies (on the scale that people are 'convinced' by) are not doing their job.

Chelation remains one of the most promising medical treatments for what is commonly diagnosed as ‘autism’, yet the government chooses to spend money instead on long term genetic research that will be of no benefit to children who were diagnosed with autism today.

The first large scale research project into chelation for those with autism is just getting underway at the University of Arizona. It is being funded by anonymous private donors.

[2] Mercury testing.

Mercury testing, especially if done with a mail-order lab, can be both misleading and overly expensive. If you truly suspect mercury poisoning, spend $35 for a urine mercury test at your local clinic or hospital—don’t spend up to $300 to get information of questionable accuracy and minimal utility.

I don't think that Dr. Laidler has made his case that the information you get for your $300 is "of questionable accuracy and minimal utility". It was mighty accurate and useful to us.

[3] Chelating agents.

Many of the remedies promoted to remove mercury and other heavy metals are either not effective, not safe or both. Of the available chelating agents for mercury, DMSA offers the best safety and the best effectiveness.

[4] Safety.

Despite its impressive safety record, DMSA is not without side effects. Long-term treatment with DMSA has not been studied (insert comment about how the government should study this-ed) and may result in serious problems. Close medical monitoring is strongly recommended if you decide to use
DMSA therapy on your child.

* * *

1. Is it not also true that even in the legitimate use of chelation for lead poisoning, there is no expectation of reversing whatever neurological damage has already occurred? I would think this would be another strike against the credibility of chelation for autism.
— Lisa Randall Jul 27, 03:37 PM

It is true that there are no guarantees that getting the mercury out of your child will cure their autistic symptoms, just as there is no guarantee that chemotherapy will cure cancer. Most parents faced with either situation are likely to give their child the chance at recovery even if the odds are not 100%. I do know of two children who did not respond to chelation therapy. Neither child was harmed by it and neither of their mothers regret trying it.

We have no guarantee that tomorrow, the last drop of Hg won't tumble out of our boy and his wonderful progress will come to an end. If it does, we will make yet another one of those course corrections that parents of special kids have to make. But at least we will know that we got him as healthy as we could.

2. The studies that have looked at removal of lead by chelation (that Autism Diva has looked at on pubmed) showed no improvement in IQ or behavior, (or both?)

Brain damage in general is not seen as reversible.

This makes logical sense. But this has not been my experience.

My son called me mommy until he regressed at 18 months in the fall of 2003. In June of 2004 I gave him 300mg of DMSA for his chelation challenge to see if he had mercury toxicity. He was given the dose around 8am and about 6 hours later he called me ‘Mommy’ for the first time in almost a year.

I was in my bedroom cleaning, and he came in and started pulling on my hand. I was trying to finish my task before I went with him to see what he wanted, so I was looking away from him. I thought I heard him say ‘mommy’ so I looked down, and instead of pulling my hand toward the door and looking toward where he wanted me to go, he was looking at my face and called me ‘Mommy’ three more times. I was completely stunned.

At that point I expected that his tests would come back positive for mercury, and they did. There was no question after that whether or not we would try chelation on him.

To respond to Autism Diva’s very good point, I no idea as to why DMSA would have an effect like this if his mercury has caused brain damage. It makes no sense that my son would improve that drastically in 6 hours.

I would REALLY like the federal government to clear this up for Autism Diva and me. They could... oh I don't know... do a study or something?

Some of the autism/mercury parents think their kids got toxified while in the womb from a rhogam shot that had thimerosal in it.

There’s no evidence for that...

Again I must repeat my mantra. There is no evidence that Rhogam plays a role in the development of autism because it has never been studied.

A year ago Lyn Redwood, the head of Safe Minds, was invited personally by Dr. Julie Gerberding, head of the CDC, to submit a wish list of research proposals to her. Among the requested research was a study to see if Rhogam could be involved with the development of autism. I spoke with Lyn last week and she said that neither the CDC nor Dr. Gerberding has never responded to the list that they asked be submitted to them.

I am a Rhogam mom and was surprised that this had not been looked at yet. I am waiting for the CDC and the FDA to go ahead and do this very necessary safety study on an injection that that they have already approved on pregnant women.

but besides that, they think that they can chelate the kid NOW and affect proposed damage do when the brain was developing? They obviously have no clue about brain development and probably have never looked into Fetal Alchohol Syndrome. There’s nothing that undoes that, but the kid can learn to use what he has to the best possible extent.
— Autism Diva Jul 27, 03:46 PM

Autism Diva will get no argument from me (except for the part where she suggests that as the parent of an autistic child I am clueless about brain development).

Why did my son respond so quickly?

I think that the government should study it and find out.

3. Because there’s no way of knowing how much improvement in a child’s behavior and abilities is the result of natural developmental processes, the only accurate way to test chelation would be to perform double-blind studies with autistic adults.

If you’re interested in an unscientific anecdote, I had all of my amalgam fillings removed 10 years ago and took chelation supplements for a few weeks. It was my dad’s idea; he is a major health faddist, antivax, supplements out the wazoo, toxic fumes in the woodwork, you get the idea.

I noticed some improvement in my sense of smell after having the amalgams taken out, but the main benefit was just the nice new pretty composite fillings.

I’m still just as autistic as ever.

So is my dad…
— Bonnie Ventura Jul 28, 09:38 AM

As in Bonnie's case, the anecdotal evidence I have seen seems to suggest the older you are, the less effective chelation is on autistic symptoms. The best results seem to be for children under five and progress seems to really slow down as children age.

I have read several stories though from people who have tried it on their teenagers and even on adults and some progress has been made.

Say it with me:

Sounds like something that the government should study.