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TACA E-Newsletter

May 2010 #1

Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.

We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.

We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.

Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.

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3. Daily Autism Updates for Families

All news related to autism: AgeofAutism.com

4. PBS Frontline on Autism Resorts to Pseudo-Documentary, Tabloid Journalism

Jay Gordon, MD, Huffington Post
Nationally renowned pediatrician and Assistant Professor of Pediatrics, UCLA Medical School
Posted: April 28, 2010

Tonight PBS aired a show called "The Vaccine War." I was interviewed at great length and in great depth about vaccines and my point of view and expressed my ambivalence about the polarization of this issue and the need for more calm reasoned discussion about the number one question that new parents have. I told Kate McMahon, the co-producer of the show, that there was a large group of doctors and others who cannot be dismissed with the facile label "anti-vaccine" because we still give vaccines and see a place for them in the practice of medicine but we do not agree with the current vaccine schedule nor the number of vaccines children receive all at one time.

A few days ago, Ms.McMahon emailed me to tell me that the decision had been made to omit my interview from the show. There would not be one word from me. She didn't tell me that she had also omitted 100% of Dr. Robert Sears interview. And that any other comments from physicians supporting the parents on the show in their ambivalence about vaccines or their decision to refuse all vaccines would also be omitted.

She left this as a show with many doctors commenting very negatively, very frighteningly and often disdainfully and dismissively about vaccine "hesitation" as they called it.

Below is my email response to Kate McMahon.

****
Dear Kate,

The Frontline show was disgraceful. You didn't even have the courtesy to put my interview or any part of the two hours we spent taping on your web site.

You created a pseudo-documentary with a preconceived set of conclusions: "Irresponsible moms against science" was an easy takeaway from the show.

Did you happen to notice that Vanessa, the child critically ill with pertussis, was not intubated nor on a respirator in the ER? She had nasal "prongs" delivering oxygen. I'm sorry for her parents anxiety and very happy that she was cured of pertussis. But to use anecdotal reports like this as science is irresponsible and merely served the needs of the doctor you wanted to feature.

No one pursued Dr. Offit's response about becoming rich from the vaccine he invented. He was allowed to slide right by that question without any follow up. Dr. Paul Offit did not go into vaccine research to get rich. He is a scientist motivated by his desire to help children. But his profiting tens of millions of dollars from the creation of this vaccine and the pursuit of sales of this and other vaccines is definitely not what he says it is. His many millions "don't matter" he says. And you let it go.

Jenny McCarthy resumed being a "former Playboy" person and was not acknowledged as a successful author, actress and mother exploring every possible avenue to treating her own son and the children of tens of thousands of other families.

I trusted you by giving you two or three hours of my time for an interview and multiple background discussions. I expressed my heartfelt reservations about both vaccines and the polarizing of this issue into "pro-vaccine" and "anti-vaccine" camps. I told you that there was at least a third "camp." There are many doctors and even more parents who would like a more judicious approach to immunization. Give vaccines later, slower and with an individualized approach as we do in every other area of medicine.

What did you create instead?

"The Vaccine War."

A war. Not a discussion or a disagreement over facts and opinions, but a war. This show was unintelligent, dangerous and completely lacking in the balance that you promised me -- and your viewers -- when you produced and advertised this piece of biased unscientific journalism. "Tabloid journalism" I believe is the epithet often used. Even a good tabloid journalist could see through the screed you've presented.

You interviewed me, you spent hours with Dr. Robert Sears of the deservedly-illustrious Sears family and you spoke to other doctors who support parents in their desire to find out what went wrong and why it's going wrong and what we might do to prevent this true epidemic.

Not a measles epidemic, not whooping cough. Autism. An epidemic caused by environmental triggers acting on genetic predisposition. The science is there and the evidence of harm is there. Proof will come over the next decade. The National Children's Study will, perhaps by accident, become a prospective look at many children with and without vaccines. But we don't have time to wait for the results of this twenty-one year research study: We know that certain pesticides cause cancer and we know that flame retardants in children's pajamas are dangerous. We are cleaning up our air and water slowly and parents know which paint to buy and which to leave on the shelves when they paint their babies' bedrooms.

The information parents and doctors don't have is contained in the huge question mark about the number of vaccines, the way we vaccinate and the dramatic increase in autism, ADD/ADHD, childhood depression and more. We pretend to have proof of harm or proof of no harm when what we really have is a large series of very important unanswered questions.

In cased you were wondering, as I practice pediatrics every day of my career, I base nothing I do on Dr. Wakefield's research or on Jenny McCarthy's opinions. I respect what they both have done and respectfully disagree with them at times. I don't think that Dr. Wakefield's study proved anything except that we need to look harder at his hypothesis. I don't think that Jenny McCarthy has all the answers to treating or preventing autism but there are tens of thousands of parents who have long needed her strong high-profile voice to draw attention to their families' needs: Most families with autism get inadequate reimbursement for their huge annual expenses and very little respect from the insurance industry, the government or the medical community. Jenny has demanded that a brighter light be shone on their circumstances, their frustration and their needs.

I base everything I do on my reading of CDC and World Health Organization statistics about disease incidence in the United States and elsewhere. I base everything I do on having spent the past thirty years in pediatric practice watching tens of thousands of children get vaccines, not get vaccines and the differences I see.

Vaccines change children.

Most experts would argue that the changes are unequivocally good. My experience and three decades of observation and study tell me otherwise. Vaccines are neither all good--as this biased, miserable PBS treacle would have you believe--nor all bad as the strident anti-vaccine camp argues.

You say the decisions to edit 100% of my interview from your show (and omit my comments from your website) "were purely based on what's best for the show, not personal or political, and the others who didn't make it came from both sides of the vaccine debate." You are not telling the truth. You had a point to prove and removed material from your show which made the narrative balanced. "Distraught, confused moms against important, well-spoken calm doctors" was your narrative with a deep sure voice to, literally, narrate the entire artifice.

You should be ashamed of yourself, Kate. You knew what you put on the air was slanted and you cheated the viewers out of an opportunity for education and information. You cheated me out of hours of time, betrayed my trust and then you wasted an hour of PBS airtime. Shame on you.

The way vaccines are manufactured and administered right now in 2010 makes vaccines and their ingredients part of the group of toxins which have led to a huge increase in childhood diseases including autism. Your show made parents' decisions harder and did nothing except regurgitate old news.

Parents and children deserve far better from PBS.

Jay N. Gordon, MD, FAAP
Assistant Professor of Pediatrics, UCLA Medical School
Former Senior Fellow in Pediatric Nutrition, Memorial Sloan-Kettering Institute

5. More Frontline Coverage from the Age of Autism

Dismissed!

By Anne Dachel

Tuesday night’s PBS Frontline show, “The Vaccine War,” is getting a lot of reaction within the autism community today. Before watching Frontline, I’d heard enough about the show not to expect fair coverage. The very title was misleading. The word “war” makes one think of a conflict with two sides. That’s not what PBS presented to the public however, and anyone with even a rudimentary understanding of the vaccine controversy, could recognize the spin. Read more.

AAP: The Internet is Causing the Autism Epidemic?

By Katie Wright

If you watched “Frontline: The Vaccine Wars” you probably learned:

1) Unregulated free speech is dangerous, especially the internet which is a major cause of the autism epidemic

2) Parents have access to way too much information

3) Pediatricians, not children, are the real victims of this phony epidemic

Read more.

Frontline's The Vaccine Wars Complete Interview with Generation Rescue's Jenny McCarthy

Jenny, in your book Louder than Words, you describe Evan's first and subsequent seizures. Summarize that episode, when he began having seizures.

One of the first signs when I knew something was wrong was one morning he slept in late. So I opened the door and just saw Evan struggling to breathe, and pasty white, blue lips, and shaking. I picked him up and just started screaming at the top of my lungs, ran down the hallway, called 911, and it took them about 20 minutes to stop what they were calling a seizure. Read more.

Frontline The Vaccine Wars Complete Interview with Dr. Bob Sears

Recount your first encounter with an anti-vaccine book with the DTP [diphtheria, tetanus, pertussis] vaccine.

I got interested in the topic of vaccines way back in medical school. A friend of mine convinced me to read a book about vaccines, and it ended up being a very anti-vaccine book. It was all about an old vaccine called the DTP vaccine that we don't use anymore. But the book talked a lot about the risks and the dangers of that vaccine. The author of that book was calling for that vaccine to no longer be used.

A number of years later, it turns out that they did discover that vaccine was causing a lot of very severe, life-threatening, even fatal side effects, so they did end up taking that vaccine off the market. Read more.

Frontline's Complete The Vaccine Wars Interview with Generation Rescue's J.B. Handley

How did your life change when you discovered your son had autism?

Everything changed from the day it happened. It was an immediate nightmare. It was 30 days of six, seven, eight hours of nonstop crying by both me and my wife. It was the painful realization that my son may not have the kind of life that I expected for him. And once the grief had passed just enough to get up off the floor, it was a mandate to do whatever I could do with the rest of my life to give him the best possible life. Read more.

Jenny McCarthy Fires Back at Frontline for Hatchet Job Journalism

Please read Jenny McCarthy's post and comment at Huffington Post.

When the producers of PBS's Frontline approached me to be interviewed for their new documentary "The Vaccine War," I accepted with a simple condition: doctors and scientists on our side of the vaccine-autism debate needed to have a voice, too.

Prior to agreeing to the interview, Frontline sent us this email:

"Frontline will carry out a detailed and even-handed investigation including voices from all sides of the controversy including parents, activists, physicians, scientists, lawyers, politicians and vaccine manufacturers." Read more.

Participate in the PBS Frontline Vaccine Survey

You are invited to share your thoughts on vaccines in the PBS Frontline Vaccine Survey.

Please leave a comment here when you complete the survey. Thank you.

6. Correlations point to environmental, vaccine link to autism

In U.S., more vaccines, more autism
Richard Moore, The Lakeland Times
Investigative Reporter

Third in a series

(Editor's note: This is a very in-depth series. Please see links to the other three stories at the end of this article.)

For much of the past decade, as autism diagnoses have surged, there has been a broad effort by the mainstream media, the government and the scientific community to dispel any notion that autism might have some environmental connection or that childhood vaccines might trigger the disorder.

Along with an escalation of autism occurrences has come an escalation of studies and articles and pronouncements designed to disprove any environmental component, or to rationalize away any real increase. No fewer than 19 studies have brushed aside any vaccine link, for example, while the federal government, through the Centers for Disease Control and Prevention (CDC), has expended great time and money to reassure the public that vaccines are safe.

The same for the national media. In 2008, for instance, Time Magazine ran a glowing piece on the "miracle marvel" of vaccinations and their benefits.

"CDC officials estimate that fully vaccinating all U.S. children born in a given year from birth to adolescence saves 33,000 lives, prevents 14 million infections and saves $10 billion in medical costs," the article by Alice Park stated. "Part of the reason is that the vaccinations protect not only the kids who receive the shots but also those who can't receive them-such as newborns and cancer patients with suppressed immune systems."

The New York Times, too, has acted as a vocal instrument of the pharmaceutical industry, as Robert F. Kennedy, Jr., pointed out last year on The Huffington Post, saying The Times acted as a "blind mouthpiece" for the government and a leading defender of vaccine safety.

Today, well into 2010, there's no question the academic, pharmaceutical and mainstream media bias toward vaccine safety still exists, but new studies are forcing at least some professionals to look again at toxicity as a real cause of autism.

For example, a 2009 University of California study contends the rise in autism diagnoses cannot be attributed to diagnostic substitution, and that a real epidemic is underway.

UC-Davis researchers found that the seven- to eight-fold increase in the number of children born in California with autism since 1990 could not be explained by either changes in how the condition is diagnosed or counted - and the trend shows no sign of abating, the university stated in announcing the study.

Published in the January 2009 issue of the journal Epidemiology, the study suggested shifting research resources from genetics to environmental chemicals and infectious microbes that could be the root cause of the problem.

"It's time to start looking for the environmental culprits responsible for the remarkable increase in the rate of autism in California," said UC-Davis lead researcher Irva Hertz-Picciotto, a professor of environmental and occupational health and epidemiology.

That and other studies have caused some writers, even in the New York Times, to begin to give environmental causes another look.

"Suspicions of toxins arise partly because studies have found that disproportionate shares of children develop autism after they are exposed in the womb to medications such as thalidomide (a sedative), misoprostol (ulcer medicine) and valproic acid (anticonvulsant)," wrote New York Times op-ed columnist Nicholas Kristof in February. "Of children born to women who took valproic acid early in pregnancy, 11 percent were autistic. In each case, fetuses seem most vulnerable to these drugs in the first trimester of pregnancy, sometimes just a few weeks after conception."

He also pointed to a study targeting chemicals in common consumer products.

"Researchers measured the levels of suspect chemicals called phthalates in the urine of pregnant women," he wrote. "Among women with higher levels of certain phthalates (those commonly found in fragrances, shampoos, cosmetics and nail polishes), their children years later were more likely to display disruptive behavior."

Still, Kristof could only bring himself so far; he continued to rule out the toxins contained in vaccines as a possible agent of autism, and did so with scientific assurance, as if the debate was settled.

"Publicity about fears that vaccinations cause autism - a theory that has now been discredited - perhaps had the catastrophic consequence of lowering vaccination rates in America," Kristof wrote.

Who is discredited?

In fact, the debate is far from over, and giving environmental causes, in particular various compounds and chemicals, new credence should stoke it even more.

To be sure, by any objective analysis, the existing research points directly to a vaccine link, particularly when correlating data with other countries. Any objective review, had any major media conducted one, also would have exposed widespread conflicts of interest in pro-vaccine studies.

It's not as if the research is hiding. All of the research in this particular article is in the public domain and widely circulated, but, unlike reports of vaccine safety, little of it has made the front pages of major newspapers.

As recently as March, one of the main proponents of vaccine safety has come under ethical scrutiny, to cite the latest example. A Danish scientist, Poul Thorsen, who was a key researcher in two studies demonstrating that thimerosal, a mercury-based preservative and adjuvant used in vaccines, does not cause autism has been under investigation for misappropriating $2 million at Aarhus University in Denmark, allegedly using forged documents.

A 2002 study in the New England Journal of Medicine found no link between the MMR vaccine and autism in a review of more than a half-million children born in Denmark from 1991 through 1998. A 2003 study in Pediatrics examined Danish children diagnosed with autism from 1971 to 2000 and concluded the incidence of autism increased in Denmark after thimerosal was removed from vaccines.

In a statement in January, Aarhus University said it had uncovered a "considerable shortfall" in grant money from the CDC and for a research program that Thorsen headed.

"Unfortunately, a considerable shortfall in funding at Aarhus University associated with the CDC grant was discovered," the university said in a statement. "In investigating the shortfalls associated with the grant, DASTI and Aarhus University became aware of two alleged CDC funding documents as well as a letter regarding funding commitments allegedly written by Randolph B. Williams of CDC's Procurement Grants Office which was used to secure advances from Aarhus University. Upon investigation by CDC, a suspicion arose that the documents are forgeries."

The investigation has rallied the troops of those who believe in a vaccine connection. Someone who would forge documents to steal money, if that turns out to be true, can certainly phony up data in a study, his critics say.

The CDC stands by the earlier research.

It just won't go away

Of course, CDC researchers knew way back when, at least in the waning days of 1999, there was a thimerosal link to autism. That's when CDC researcher Tom Verstraeten found it.

Here's how he reported it in a Dec. 17, 1999, email to his colleagues, Robert Davis and Frank Destefano. The subject line was, "It just won't go away..."

"I added another exposure variable (addcat) in one list that looks at the increase of mercury each month for the first three months, divided by the average bodyweight in the first, second and third month and takes the maximum value of this," Verstraeten wrote. "This does not show much, to which I would conclude that, except for epilepsy, all the harm is done in the first month."

The harm he was talking about was autism. That apparently was not what the CDC wanted to hear, so Verstraeten and colleagues began working on different analyses.

The organization Safe Minds has documented the chronology of those findings, each review resulting in a lower causal impact of vaccine mercury exposures on neuro-developmental disorders.

The first study, the group reported, demonstrated large and statistically significant mercury exposure effects that exceeded the findings of the later reports. However, between February 2000 and November 2003, four separate generations of an analysis were conducted. With each generation, elevated and statistically significant risks were reduced and/or eliminated, Safe Minds reported.

"Most notably, these initial analyses compared disease risk in the highest exposure population groups to disease risk in zero exposure population groups," the group stated. "In addition, the target study population had not yet been subject to numerous exclusions and adjustments applied later, the cumulative effect of which was to reduce the reported impact of mercury exposure on chil"

What were the original findings?

Relative risks of autism, ADD, sleep disorders and speech/language delay were consistently elevated relative to other disorders, Safe Minds said Verstraeten found. In other words, there was statistically significant associations between the amount of mercury children were exposed to and a wide range of brain disorders.

Most particularly, the elevated risk of autism for the highest exposure levels at one month ranged from 7.6 to 11.4 times the zero exposure level, the group asserts.

As Safe Minds points out, the increased risk level corresponded to a tenfold increase in autism rates witnessed since vaccine mercury exposures increased starting in 1990.

In subsequent studies, fewer comparisons were based on a level of zero mercury exposure, all comparisons excluded children who did not receive two polio vaccines, thereby eliminating the children and families most likely to avoid vaccination on principle, introduced "stop dates," potentially diverting diagnoses like autism to earlier, less severe, diagnoses such as speech and language delays, and reduced the size and diversity of the study population, Safe Minds stated.

What was problematic in these new efforts was that, by the end, Verstraeten had moved on to employment in the pharmaceutical industry, at GlaxoSmithKline, yet emails show he was involved in preparing the report despite the apparent conflict of interest.

Emails in 2008 obtained through FOIA requests by Dr. Brian Hooker show Verstraeten participating in a September 2001 conference call to discuss thimerosal, and the researcher himself acknowledged discussions on the topic after leaving the CDC, though he said he did not perform any additional analyses or instigate those discussions.

Still, the emails refer to "Tom's" thimerosal paper, indicating he was deeply involved in the undertaking.

Here's how Congressman Dave Weldon (R-Florida) put it in a 2003 letter to Julie Gerberding, director of the CDC.

"A review of (supporting) documents leaves me very concerned that rather than seeking to understand whether or not some children were exposed to harmful levels of mercury in childhood vaccines in the 1990s, there may have been a selective use of the data to make the associations in the earliest study disappear," Weldon wrote. "Furthermore, the lead author of the article, Dr. Thomas Verstraeten, worked for the CDC until he left over two years ago to work in Belgium for GlaxoSmithKline (GSK), a vaccine manufacturer facing liability over TCVs. In violation of their own standards of conduct, Pediatrics failed to disclose that Dr. Verstraeten is employed by GSK and incorrectly identifies him as an employee of the CDC. This revelation undermines this study further."

As CBS reporter Sharyl Attkisson observed in 2007, the periodical Pediatrics did finally pick up on the conflict and criticized it, but "it got little mainstream attention."

Declining rates in Denmark

What has also received little mainstream attention is an analysis of autism rates in Denmark that showed a decline after thimerosal was removed.

Some vaccines, such as vaccines for hepatitis B, contained as much as 12 micrograms of mercury per dose, a pretty potent punch - in the United States, lawsuits filed charged that children could receive a dose of mercury up to 100 times higher than the United States Environmental Protection Agency recommended safety guideline for a vaccination shot - and it was banned from children's vaccines decades ago in Russia (1985), Japan, Switzerland, Sweden, Denmark (1992) and Norway.

Interestingly, an analysis of autism rates in Denmark showed a decline after thimerosal was removed. The group Safe Minds compared same-age groups and found a 2.3 times higher number of autism cases among 5-9 year olds exposed to thimerosal relative to 5-9 years old given thimerosal-free vaccines.

"Using this methodology, the incidence among the unexposed group is approximately 1 in 1,500, which is much lower than the US and UK rates," the analysis stated. "The incidence of autism in the thimerosal group is estimated to be 1 in 500, similar to US and UK rates, and 3 times higher than the unexposed group."

Thimerosal still around

Certainly those who dispute a vaccine connection to autism point to the fact that, as they say, in 1999 the American Academy of Pediatrics and the U.S. Public Health Service recommended that thimerosal be removed from childhood vaccines.

However, vaccines with thimerosal as a preservative were used at least through 2002, and, some say, after that.

Not only that, but it remains in some vaccine as a trace rather than as a preservative.

This is how the Minnesota Department of Health puts it.

"Thimerosal is still used in the early stages of manufacture of a few vaccines to ensure the production line is sterile. It is removed through a purification process, with only trace remaining (about 1/100th of the amount found in older vaccines)."

Is a trace dangerous? Here's how chemist Mike Wagnitz answered that question in an email this week.

"Thimerosal is added at a concentration of 1:10000 (the FDA's definition 0f 'trace')," Wagnitz wrote. "This is equivalent to a concentration of 100,000 parts per billion (ppb). Since thimerosal is half mercury, this puts the concentration of mercury, in the multi-dose vaccine vial at 50,000 ppb. To put this in perspective, liquid waste that exceeds 200 ppb of mercury must be disposed of in a special hazardous waste landfill. Drinking water cannot exceed 2 ppb mercury. 'Trace' would probably be the last word to use when describing the amount of mercury in vaccines. Is it really safe to inject infants with levels of mercury 250 times higher than hazardous waste levels?"

In April, writing in The Cap Times, Wagnitz said four vaccines were used in Wisconsin that contain that amount of mercury.

"They are vaccines administered from multi-dose flu, H1N1, meningococcal and tetanus/diphtheria booster vials," he wrote. "The flu and H1N1 vaccine are administered to pregnant women and children 6 months of age. The tetanus is approved for children 7 years and older. The meningococcal is approved for children 12 years and older. This year's flu and H1N1 vaccines will expire soon and have to be treated as hazardous waste. The next time your physician or nurse tells you that mercury is no longer used in vaccines (or that the quantity is small), feel free to share this information with them."

Immune system assault

Of course it's not all about thimerosal. Vaccines contain other toxins suspected of a link to autism, such as aluminum, which many say is the new thimerosal, and a chorus of voices is rising to protest the vaccination schedule in the United States, which, as Generation Rescue pointed out in an April 2009 paper, is the most aggressive in the world.

According to the paper, the United States has the highest number of mandated vaccines for children under five in the world (36, or double the Western world average of 18), the highest autism rate in the world (10 times or more the rate of some other Western countries), but only places 34th in the world for its children under-5 mortality rate.

"The vaccine schedule for children aged 5 and under has nearly tripled in 25 years," the paper states. "In 1983, the Centers for Disease Control recommended 10 vaccines for this age group. Today, the recommendation is 36 vaccines. Calls by advocacy organizations for a 'safer and leaner vaccine schedule' have been dismissed, with health authorities implying that mortality rates from childhood diseases would materially increase."

The paper compared vaccine schedules and under-five mortality rates for 30 countries, including the United States.

"The 29 other countries all had lower (better) under 5 mortality rates than the U.S," the analysis found. "Additionally, autism rates were compared for certain countries with reliable, published autism prevalence data. . . . The analysis lends credibility to the relationship between vaccines and autism and challenges the public view of both the Centers for Disease Control and American Academy of Pediatrics that more vaccines is always positive for public health," the analysis stated.

For example, as noted, the U.S. has about a 1 in 110 rate of autism, with 36 vaccines scheduled for the under-five population, but ranks 34th in infant mortality.

By contrast, Iceland mandates only 11 vaccines, has an autism rate of 1 in 1,100 and is first in lower infant mortality. At number 2 in lowest rates of under five mortality is Sweden, which also mandates only 11 vaccines under five, and has an autism rate of 1 in 862.

Israel mandates 11, has a 1 in 1,000 autism rate and ranks 17th in under five mortality. Norway mandates 13 and has a rate of 1 in 2000.

The correlation, Generation Rescue says, points to a link to the vaccination schedule

As Jenny McCarthy, the principal spokesperson of Generation Rescue also observes, it's telling to find out what studies have not been performed. For example, she says, only one single vaccine - MMR - has ever been looked at for its relationship to autism, and no study has ever compared vaccinated children to unvaccinated children.

One 2008 study - the only one known to compare vaccinated and unvaccinated children in any way - did compare children who received the entire 3-shot series of Hepatitis B Vaccine, and found they had a nine times higher rate of developmental disabilities than unvaccinated children.

"This study found statistically significant evidence to suggest that boys in United States who were vaccinated with the triple series Hepatitis B vaccine, during the time period in which vaccines were manufactured with thimerosal, were more susceptible to developmental disability than were unvaccinated boys," the study concluded.

In making her vaccine case, McCarthy points to another statistic as well: a government website shows more than 1,000 claims of death and over $1.9 billion paid out in damages for vaccine injury, mostly to children.

Amanda Peet

But what about all those studies dismissing the link between vaccines and autism? Between 2003 and 2008 alone, 10 studies from Canada, Denmark, Sweden, United Kingdom, and the United States showed no association between thimerosal in vaccines and neuropsychological developmental disorders, including autism.

And Amanda Peet - as it turns out, those who dismiss the connection have their own celebrity voice - ramped it up even more.

"Fourteen studies have been conducted (both here in the US and abroad), and these tests are reproducible; no matter where they are administered, or who is funding them, the conclusion is the same: there is no association between autism and vaccines," said Peet, a spokesperson for Every Child By Two's Vaccinate Your Baby campaign, which is funded by Sanofi Pasteur, a vaccine manufacturer.

The website says Peet volunteers her time and does not receive compensation. But that hardly makes her independent, and neither are the studies she has cited, as documented by the website fourteenstudies.org.

For instance, "Thimerosal and the Occurrence of Autism: Negative Ecological Evidence from Danish Population-Based Data," which has been attacked as flawed because it did not account for missing records, had two authors who were employees of Denmark's largest vaccine manufacturer, Statens Serum Institute.

Another study, "Autism and Thimerosal-Containing Vaccines: Lack of Consistent Evidence for an Association," involved the CDC and the Danish Statens Serum Institut, again Denmark's largest vaccine company.

The author of "Early Thimerosal Exposure and Neuropsychological Outcomes at 7 to 10 Years" in the New England Journal of Medicine worked at one time for Merck, while a contributing author had received consulting fees from Merck, Sanofi Pasteur, GlaxoSmithKline, and MedImmune

What about "Pervasive Developmental Disorders in Montreal, Quebec, Canada: Prevalence and Links With Immunizations?" by Dr. Eric Fombonne. Here's the conflict statement from the study:

"In the United Kingdom, Dr Fombonne has provided advice on the epidemiology and clinical aspects of autism to scientists advising parents, to vaccine manufacturers, and to several government committees between 1998 and 2001. Since June 2004, Dr Fombonne has been an expert witness for vaccine manufacturers in US thimerosal litigation."

Finally, while pro-vaccine advocates try to paint those who see a vaccine connection as completely anti-vaccine, McCarthy has said that's not the case at all.

In the end, she has written, there has to be room for moderation on vaccines, for a recognition that one size does not fit all, for an honest dialogue around risks and benefits, and for a willingness to maybe delay or scale back some vaccines.

"Health authorities said autism was caused by cold mothers; parents proved them wrong," she wrote in March in The Huffington Post. "They said kids didn't regress into autism; parents proved them wrong. They said kids with autism weren't more sick with gastrointestinal issues; parents proved them wrong. They said autism was genetic and this epidemic wasn't real; parents proved them wrong. Is now the time to bet against the parents?"

Of course, sometimes it's hard to sift through academic studies and competing claims in the media. Sometimes the best way to examine a potential vaccine connection is to look beyond the statistics and into the lives of real people with autism, using actual case histories and medical records.

Other articles in the series:

1. Autism diagnoses explode off the charts - 1 in 110 affected

2. Autism debate focuses on question of epidemic

4. Autism timeline: normal child, vaccines, reactions, regression

7. EPA Study: Autism Boom Began in 1988, Environmental Factors Are Assumed

David Kirby on the Huffington Post

If it seems like most of the people you know with autism are 22 or younger, that's because most people diagnosed with autism were born after 1987. A recent US EPA study has found a distinct "changepoint" year - or spike - in autism in California and elsewhere and concludes that it would be "prudent to assume that at least some portion of this increase is real and results from environmental factors."

"In the Danish, California, and worldwide data sets, we found that an increase in autism disorder cumulative incidence began about (the birth cohort years) 1988-1989," wrote the authors Michael E. Mc Donald and John F. Paul, of the EPA's National Health and Environmental Effects Research Laboratory.

"Although the debate about the nature of increasing autism continues," they added, "the potential for this increase to be real and involve exogenous (external) environmental stressors exists."

But it was the distinct timing in the increase of autism - the birth of an epidemic, as many believe - that was most notable, and which "may help in screening for potential candidate environmental stressors."

"The calculated year was determined to be significant," the EPA scientists said. The rate of increase before 1988 "was significantly different" than the rate after that year (the "postchangepoint," in epidemiology parlance). In California, the rate spiked from 5.7-per-10,000 before the changepoint, to 20.8-per 10,000 in its wake, and the worldwide dataset showed a similar jump (from 6.0 to 24.2). In Denmark, the rise was even more dramatic, though total incidence was only a fraction of that in the US: from 0.6 to 6.6.

(A study in Japan from 1988-1996 showed continuously increasing autism rates, but no calculable changepoint year - please see the full report for a discussion on study limitations).

So why would rates more than triple in California kids born before and after 1988? Is it just the result of better diagnostics and better reporting, as many have insisted? Or did something drastic change in these children's environment, beginning in 1988?

The EPA officials doubt it was the former. They noted a recent study suggesting that changing diagnostic criteria may account for only a "2.2-fold higher cumulative incidence of autism, relative to the seven-fold increase" reported in California over 11 years. Likewise, they said, "diagnostic substitution," or switching kids from the mental retardation to autism category, "could not account for increased autism from 1987 to 1994."

As they wrote:

Although artifacts associated with observed increases in various studies cannot be ruled out, from a precautionary standpoint, it seems prudent to assume that at least some portion of this increase in incidence is real and results from environmental factors interacting with susceptible populations. As such exposure is potentially preventable, identification of relevant candidate environmental factors should be a research priority.

Meanwhile, the scientists were surprised to find such similar changepoint years in California, Denmark and the worldwide dataset, although they conceded the data were consistent with similar studies done in Minnesota and Sweden, and a third US nationwide study which found, "the greatest increase in ASD prevalence occurring in cohorts born between 1987 and 1992."

There are many external factors that could be associated with autism, the authors said, so knowing when the explosion in cases began should help narrow down the long list of suspects.

"Future studies should examine for novel or increasing exposures to environmental factors from gestation to at least age three for our calculated 1988-1989 birth cohorts," the authors wrote. "Assuming a dose-response relationship, a candidate factor would have continued to increase in the environment from the late 1980s through at least the mid-1990s."

But what could it (or they) be? According to the EPA:

  • Any candidate must be a substance or substances whose exposure level dramatically increased in developed countries beginning at the 1988 changepoint.
  • The candidate will likely be something whose exposure level was greater in California than in Denmark between 1988 and 1997.
  • The candidate is likely something that was introduced in developing countries later than California, Japan and Denmark. For example, a recent Hong Kong study "is suggestive of a rise in autism, but beginning more recently than our calculated changepoints."
  • The candidate "would need to be disruptive to early human neural development."
  • The candidate would need to have a route of exposure "consistent with bioavailability to fetuses and infants."
  • The candidate would need to have increasing levels of US exposure between 1988 and at least 1995.
  • The potential for exposure to a variety of environmental factors "acting synergistically on susceptible populations also cannot be ruled out."

The authors suggested an initial toxicological screening for potential autism-trigger candidates using the CDC's Agency for Toxic Substances and Disease Registry or similar data sets.

The EPA officials did not offer a list of substances that should be looked at, though they did note that studies on MMR vaccine and the mercury-based vaccine preservative thimerosal, "did not support a relationship with autism," including a 2004 report from the Institute of Medicine.

No studies have been done on other vaccine ingredients and autism risk, however, nor on the entire vaccine schedule.

If no candidate pans out as the culprit, they wrote, "perhaps most of the observed increases are not caused by an environmental factor, but result from study artifacts that produce false increases or from the current levels being correct but not a true increase."

Either way, the current caseload is going to cost a fortune. People with autism in California born between 1988 and 1997 will incur a mean lifetime care cost between $2.7 billion and $4.0 billion, and "these costs likely have continued to grow in recent years."

I am hopeful that this information will finally spark the mad-dash that this country desperately needs to make to identify the environmental factors in autism. We require a Manhattan-Project style operation spearheaded by the Federal government, and we needed it ten years ago. This crisis is too serious to ignore in mild complacency any longer.

Here are just some of the areas where science is looking:

AIR POLLUTION - A few studies have linked increased risk of autism to environmental toxins - such as mercury - in air pollution, including a CDC funded study from the San Francisco Bay Area, a study of Superfund Cleanup sites in Minnesota, and a study of children living in proximity to mercury-emitting coal fired power plants in Texas.

ENDOCRINE DISRUPTORS - These ubiquitous chemicals and other "early life immune insults," or ELIIs, "are important factors in childhood and adult chronic diseases," says one study from Cornell University. "However, prenatal and perinatal environmentally induced immune alterations have yet to be considered in depth in the context of autism and autism spectrum disorders."

PESTICIDES - One study presented at the 2008 International Meeting for Autism Research in London reported that mothers who used pesticide-based shampoos on pets doubled the risk of having an ASD child, compared to mothers who did not. Another study in the agriculturally intensive Central Valley of California reported that autism risk increased "with the poundage of organochlorine pesticides applied, and decreased with distance from field sites."

MERCURY IN FISH - At least one tiny study, from Australia, showed elevated mercury levels in three infants weaned on congee (a rice and fish porridge) and fed fish regularly as toddlers. Their parents had sought medical advice for developmental delay and neurological symptoms, including symptoms of autism spectrum disorder.

RETROVIRUSES - In October, researchers from the University of Nevada, the National Cancer Institute and The Cleveland Clinic announced the startling discovery of antibodies to a little known retrovirus in 95 percent of patients with Chronic Fatigue Syndrome. One of the researchers reported finding the same pathogen in 40 percent of autsim children tested. The work has been disputed by other scientists.

PREMATURE BIRTH AND EARLY BIRTH WEIGHT - Between 1990 and 2000, late preterm births in the US increased by 13 percent, and the rate of low birth-weight babies increased by 24 percent. Toxicologists calculate exposure rates to toxins based on kilograms of body weight.

VACCINES AND UNDERLYING DISORDERS - In January of this year, the Institute of Medicine's Committee to Review Adverse Effects of Vaccines issued its "Working list of adverse events to be considered." Included in the adverse events associated with the DTaP and MMR vaccines were "autism" and "Autism Spectrum Disorders (ASD)/Pervasive Developmental Disorders (PDD)." Interestingly, the IOM Committee said it would consider investigating so-called "Secondary" autism, or "autistic features arising from chronic encephalopathy, mitochondrial disorders and/or other underlying disorders." In other words, vaccines don't cause autism, but they might cause brain disease in certain predisposed kids, and that might lead to autism.

VACCINES AND IMMUNE STRESS - As for "Primary" autism, the IOM has been asked by the Federal Vaccine Injury Compensation Program (VICP, or Vaccine Court) to consider reviewing all the medical literature since the 2004 IOM report that found no link. "In particular, VICP is interested in the Committee's review on more recent theories of 'neuroinflammation' and 'hyperarousal/overexcitation of the immune system via multiple simultaneous antigenic stimulation." In other words, getting too many shots at once might cause an inappropriate neuro-immune response, such as that sometimes reported in autism.

VACCINES AND VIRAL PARTICLES - A brand new study reported finding pig and monkey viral particles in a number of vaccines. In the MMR II and Varivax (Chicken Pox) vaccines, researchers detected human endogenous retrovirus K, or HERV-K. The retrovirus was a "consequence of their manufacture using human cell lines." A 2001 study of genes and autism reports on the development of "frozen blocks of DNA" caused by imperfect gene duplication. "It appears that human endogenous retroviruses (HERV) and
HERV fragments are involved," the authors wrote. "The long version of the C4 gene, for
example, results from the integration of an HERV-K."

Do vaccines and vaccine ingredients belong on the list of candidates? Many people say no, but the IOM and the VICP say yes.

I agree with the experts. And now that we have a "changepoint" of 1988, we should go back and look at vaccine exposures both pre- and post- changepoint. Between 1988 and 1996, the following vaccines were added to the US schedule for children in the first 15 months of life:

  • HiB - Improved Hib conjugate vaccine licensed in December 1987, and single dose added to childhood schedule in 1988.
  • DTaP - Additional dose at younger age added around 1990.
  • HiB - Three additional doses added to schedule in 1991.
  • Hep B - Three doses - Added to childhood schedule in 1992.
  • Chicken Pox - Approved in 1995, added to schedule in 1996

1988 was a very interesting year, and those children have a lot to tell us. Let's listen.

8. Autistic Surfer Clay Marzo Masters Waves but Struggles on Land

Pro-surfer's Asperger's Syndrome Enhances His Surfing

By JOHN DONVAN and CAREN ZUCKER, ABC World News
April 26, 2010

When pro-surfer Clay Marzo rides the waves off Maui's coast, it's hard to imagine that a man so gifted in the water could struggle so much on land.

An autistic boy who struggles on land conquers the waves with his surfboard.

Beyond a few words, Marzo, 20, finds it hard to hold a conversation. Ask him a question, and finding an answer seems to cause him pain. Chat with him for half an hour, and the words never never flow any easier, because Marzo has autism.

He has a milder form known as Asperger's syndrome. Labeled a disability, Asperger's may help to explain why Marzo is so good on a surfboard.

Since he was a little boy, when his difficulty in communicating became evident, Marzo zeroed in on water. He wanted to be near the water, to be in it -- a focus so intense that it was actually obsessive, according to his mother, Jill Marzo. Obsession is part of Asperger's.

In the water, "he was comfortable in his skin," said Jill Marzo. "Out of the water, he is not comfortable, even today. In the water, it's like he can breathe."

Marzo spends hours a day in the ocean, year after year. Some Asperger's obsessions, such as fixating on train schedules or "Star Wars" or lightbulbs, can disrupt. But Marzo's water obsession evolved into surfing, where obsession is required to succeed.

Marzo's obsession has made him a star surfer. He's a favorite with surfing magazines, is sponsored by Quicksilver apparel and earns an income that reaches into the six figures.

Surfing Fame Leads to Struggle
But on dry land, says his mom, Marzo's a fish out of water, unable to process easily anything that takes quick thinking. He struggles in getting around, meeting strangers and answering questions. It's too much too fast for his brain to take in, and the attention that accompanies his surfing fame makes for an uncomfortable experience.

"It's got to be more simple," said Marzo. "You know? Simple. Surf and eat and sleep, you know? My three top things."

That might sound simple enough, but it's never simple to live with Asperger's.

For Marzo, though, it just happened to work out: He needed the water, and the sea was there to catch him.

9. Little-Known Disorder Can Take a Toll on Learning

By TARA PARKER-POPE, New York Times

Parents and teachers often tell children to pay attention — to be a “good listener.” But what if your child’s brain doesn’t know how to listen?

That’s the challenge for children with auditory processing disorder, a poorly understood syndrome that interferes with the brain’s ability to recognize and interpret sounds. It’s been estimated that 2 to 5 percent of children have the disorder, said Gail D. Chermak, an expert on speech and hearing sciences at Washington State University, and it’s likely that many cases have gone undiagnosed or misdiagnosed.

The symptoms of A.P.D. — trouble paying attention and following directions, low academic performance, behavior problems and poor reading and vocabulary — are often mistaken for attention problems or even autism.

But now the disorder is getting some overdue attention, thanks in part to the talk-show host Rosie O’Donnell and her 10-year-old son, Blake, who has A.P.D.

In the foreword to a new book, “The Sound of Hope” (Ballantine) — by Lois Kam Heymann, the speech pathologist and auditory therapist who helped Blake — Ms. O’Donnell recounts how she learned something was amiss.

It began with a haircut before her son started first grade. Blake had already been working with a speech therapist on his vague responses and other difficulties, so when he asked for a “little haircut” and she pressed him on his meaning, she told the barber he wanted short hair like his brother’s. But in the car later, Blake erupted in tears, and Ms. O’Donnell realized her mistake. By “little haircut,” Blake meant little hair should be cut. He wanted a trim.

“I pulled off on the freeway and hugged him,” Ms. O’Donnell said. “I said: ‘Blakey, I’m really sorry. I didn’t understand you. I’ll do better.’ ”

That was a turning point. Ms. O’Donnell’s quest to do better led her to Ms. Heymann, who determined that while Blake could hear perfectly well, he had trouble distinguishing between sounds. To him, words like “tangerine” and “tambourine,” “bed” and “dead,” may sound the same.

“The child hears ‘And the girl went to dead,’ and they know it doesn’t make sense,” Ms. Heymann told me. “But while they try to figure it out, the teacher continues talking and now they’re behind. Those sounds are being distorted or misinterpreted, and it affects how the child is going to learn speech and language.”

Blake’s brain struggled to retain the words he heard, resulting in a limited vocabulary and trouble with reading and spelling. Abstract language, metaphors like “cover third base,” even “knock-knock” jokes, were confusing and frustrating.

Children with auditory processing problems often can’t filter out other sounds. The teacher’s voice, a chair scraping the floor and crinkling paper are all heard at the same level. “The normal reaction by the parent is ‘Why don’t you listen?’ ” Ms. Heymann said. “They were listening, but they weren’t hearing the right thing.”

The solution is often a comprehensive approach, at school and at home. To dampen unwanted noise, strips of felt or tennis balls may be placed on the legs of chairs and desks. Parents work to simplify language and avoid metaphors and abstract references.

The O’Donnell household cut back on large, noisy gatherings that were upsetting to Blake. Twice-weekly sessions focusing on sounds and words, using rhyme and body gestures, helped him catch up on the learning he had missed.

Help inside the classroom is essential. One family in Westchester County, who asked not to be named to protect their son’s privacy, met with his teachers and agreed on an array of adaptations — including having his teacher wear a small microphone that directed her voice more clearly to a speaker on the student’s desk so he could better distinguish her voice from competing sounds.

Nobody knows exactly why auditory processing skills don’t fully develop in every child, according to the National Institute on Deafness and Other Communication Disorders. Scientists are conducting brain-imaging studies to better understand the neural basis of the condition and find out if there are different forms.

Reassuringly, the disorder seems to have little or nothing to do with intelligence. Blake has an encyclopedic knowledge of animals — he once corrected his mother for referring to a puma as a mountain lion. The Westchester child is now a 17-year-old high school student being recruited by top colleges.

“He’s in accelerated Latin, honors science classes,” said his mother. “I remember I used to dream of the day he would be able to wake up in the morning and just say, ‘Mommy.’ ”

Not every child does so well, and some children with A.P.D. have other developmental and social problems. But Ms. O’Donnell says that treatment is not just about better grades.

“It definitely affected his whole world,” she said of her son. “Not just learning. It cuts them off from society, from interactions. To see the difference in who he is today versus who he was two years ago, and then to contemplate what would have happened had we not been able to catch it — I think he would have been lost.”

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