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Lloyd I. Sederer, MD: Antipsychotic Medication Use In Children And Adolescents: What's A Parent To Do?

2009-12-04T10:37:11Z

If you are among the great predominance of families whose children merely drive you mad, rather than suffer from some form of serious mental illness, this commentary need not concern you (directly). But a small percentage of children in this country will suffer, by the time they are 18 (especially in late adolescence), from symptoms of a major mental disorder where thinking, behavior and mood are severely impacted and functioning as a member of the family, a friend and in school is clearly compromised. The conditions I am referring to are the psychotic illnesses of schizophrenia and bipolar disorder as well as some youth with autism (on the severe end of the spectrum), aggressive behaviors, and an uncommon but disruptive tic disorder called Tourette Syndrome. These are conditions for which doctors often prescribe antipsychotic medications such as aripiprazole (Abilify), olanzapine (Zyprexa) quetiapine (Seroquel), and risperidone (Respirdal and other brands).

A recent Journal of the American Medical Association article (October 28, 2009) by Dr. Christoph Correll and colleagues reported on a 12 week trial of these four antipsychotic medications, so called "second generation" drugs because of their more recent development, in children from age four to 19 who had not previously received this class of medication. The children received medication doses decided upon by their doctors; a comparison group of youth was followed and did not receive any of these medications. The research sought to ask if there were significant changes in three important physical measures in this short period of time: weight, lipids (cholesterol and triglycerides), and insulin resistance (a measure of how the body handles sugar that is predictive of obesity and diabetes). Their results were disturbing.

All four of the studied antipsychotic medications were associated with weight gain, ranging from about 10 to 22 pounds, with the comparison group showing no significant changes, in 12 weeks. Significant changes in body lipids were associated with three of the medications but not with aripiprazole or the comparison group. Evidence of changes in glucose and insulin were noted only for olanzapine.

In 2007, New York State Commissioner of Mental Health Mike Hogan (disclosure - my boss) and I wrote an advisory entitled: Bipolar Disorder in Children: Why are the Rates Rising?

Rates of the diagnosis of bipolar disorder in children and adolescents had risen forty (40) times in ten years. What was going on? Genes surely don't mutate that quickly, nor families, and while the environment continues to worsen it is not at that rate. The diagnosis of bipolar disorder was being made liberally, perhaps to better identify those youth in need of treatment, but at a price we are increasingly seeing since the diagnosis is usually accompanied by the prescription of an antipsychotic medication. New additions to what doctors will prescribe are likely now that the FDA Psychopharmacological Drugs Advisory Committee (June 2009) approved quetiapine and olanzapine for the treatment of schizophrenia and bipolar mania (risperidone had already been approved) - though the FDA has yet to act on the Committee's approvals.

I am not crusading against the use of antipsychotic medications in youth. These medications are a proven treatment for youth with psychotic illness and thus critical to their safety, health and recovery. Untreated psychosis, over time, is known to be "neurotoxic", which is to say that in ways we do not yet understand the brain undergoes tissue destruction, at a time of important brain development, with resulting loss of functioning. The dilemma, thus for families and doctors, is that a needed treatment brings with it significant side-effects and health risks. Serious mental illness in a child is a very tough and sometimes heartbreaking journey for a family, all the more unsettling by evidence that treatment can carry its own - and a different - set of problems.

As Commissioner Hogan and I wrote in the Bipolar Advisory, and the same applies to all major mental illnesses, doctors and families need to prudently pursue a thorough diagnostic evaluation to feel confident that a psychotic disorder warranting antipsychotic treatment is what your child is experiencing. Families are entitled to full information about their child and should not be shy about asking questions that are answered in everyday English that explain the basis for the diagnosis offered - and what to expect from treatment, including benefits and risks. A second opinion, when in doubt, or if treatment is complex or not working well enough, should be sought; any doctor who does not welcome a second opinion is probably a doctor worth getting rid of. Youth change, and so does their illness, so
reconsidering the diagnosis from time to time, and the treatment, is fair and should not be dismissed as some form of denial of the reality of a child's illness.

When antipsychotic medications are needed, guidelines for their use have been developed for psychiatric practice. In general, a doctor should seek the minimal effective dose; there is no evidence for using more than one antipsychotic medication, called polypharmacy, though in exceptional instances, with an individual patient, it may prove useful (but ask the doctor to explain why one antipsychotic will not suffice); and medications should be sustained as long as necessary but that does not necessarily mean forever. With the now indisputable evidence of the effects of "second generation" antipsychotics on weight, lipids and likely glucose metabolism (over time), and the consequent risk for heart disease, diabetes, and stroke (to name a few diseases) these health measures need careful monitoring combined with efforts to improve nutrition and exercise, and help youth elude the dangers of tobacco, alcohol and drugs that will add to their problems. Research is underway to determine if there may be medications (now used in diabetes treatment) that may help avert these problems, and the search for better antipsychotic medications, with more benefit and fewer side-effects, continues.

Families need to also understand that medications are only one of the interventions that can be provided your child. Specific psychotherapies complement medications and work to improve thinking, mood and everyday social and educational functioning. Don't settle for just medications when more can be done. And talk to other families who also struggle with the dilemma of how to care for their child while minimizing harm.

The opinions expressed herein are solely my own as a psychiatrist and public health advocate.
Lloyd I Sederer, MD

Kim Stagliano: Dr. Paul Offit: Pope Of The Church Of The Immaculate Vaccination

2009-11-30T11:21:29Z

I grew up in Boston, and am old enough to recall when the Catholic Church adamantly denied the sex scandal. Priests harming children? Sex abuse? No one wanted it to be true, and so it was easier to swallow the denials than to believe the children and adults whose lives were altered forever and who had the courage to speak out. That is, until the injured parties brought forth so much proof that the Church had to do its own digging and Catholics had to open their eyes and say, "My good God, the children and parents were right." The Church has survived and programs are in place to avoid going back to those dark times.

The November issue of Wired Magazine included a cover story titled, Epidemic of Fear: How Panicked Parents Skipping Shots Endangers Us All, about vaccination. Wired, "The magazine of the digital future" writing about vaccination? The only digit here is Dr. Offit waving his middle finger at the vaccine safety community.

The article, written by Amy Wallace, a Yale graduate and freelance writer who is also a former entertainment reporter, begins, "To hear his enemies talk, you might think Paul Offit is the most hated man in America. A pediatrician in Philadelphia, he is the coinventor of a rotavirus vaccine that could save tens of thousands of lives every year."

That sets up the article, which is a really a long press release designed to make Dr. Offit look like an heroic martyr. It's also an opportunity to attack vaccine safety advocates (many of whom are in the autism community and are parents of vaccine injured children) by making them sound like dangerous crazy people.

Ms. Wallace writes about Dr. Offit, "... he boldly states - that vaccines do not cause autism or autoimmune disease or any of the other chronic conditions that have been blamed on them."

I can boldly state that I am a 5'10" blonde with a 36C chest too. (Mirror check. Not so much.)

Author and HuffPo blogger David Kirby has written extensively on the national push among federal health officials, scientists, research organizations and doctors on the need to further examine vaccine safety. His post titled, US Health Officials Back Study Idea on Vaccinated vs. Unvaccinated Children - Will Media Take Note? included this:

On Friday, February 27, a special group convened by The Keystone Center on behalf of the Department of Health and Human Services' National Vaccine Advisory Committee Vaccine Safety Working Group (NVAC VSWG) recommended appointing a panel of experts to explore the strengths and weaknesses of conducting studies on health outcomes in vaccinated vs. unvaccinated populations. The group, known as the "Salt Lake City Writing Group," said it was "desirable" to include autism as one such health outcome.

As they stated in a draft "consensus statement": (There is) a strong desire to study the health impact of the immunization schedule, potentially through a 'vaccinated vs. unvaccinated study'. Outcomes to assess include biomarkers of immunity and metabolism, and outcomes including but not limited to neurodevelopmental outcomes, allergies, asthma, immune-mediated diseases, and learning disabilities. The inclusion of autism as an outcome is desired"

Will the media take note? No. Because Dr. Offit, as the Pope of the Church of the Immaculate Vaccination is going to continue to evangelize that vaccines are infallible. His skillful use of the media has made them the clergy who will protect his Church, even at the cost of children's health and future. Dr. Nancy Snyderman has been on TV daily berating Americans to get their H1N1 vaccine. She ended one interview by saying, "Forget the hysteria. Just get the damn vaccine!" When questioned by Matt Lauer about the vaccine/autism controversy, she replied, "There is no controversy Matt." Really? Check out Bill Maher's post Vaccines: A Conversation Worth Having with over 3000 comments.

The vitriol toward people who question vaccines or who report vaccine injury is startling. I had a commenter come into Age of Autism and tell us, "I hope you and all of your progeny die from otherwise easily preventable viral diseases."

Here's a fine comment from the Wired article:

Disgusting, these losers can't allow themselves to think it was their own rotten genetics that brought these mental diseases to their children so they have to blame someone else. Why this kind of shit only happens in the USA and the most primitive and backwards places on Earth?

It makes me wonder if Dr. Offit doesn't have biology on his side, the way the Catholic Church had two thousand years of respect and fear on its own.

For as long as homo sapiens have walked the earth, until just about sixty years ago when vaccinations came into wide use, mothers and fathers buried as many or more children than they raised to young adulthood. Perhaps we're biologically programmed to want to protect our children to such a degree that unless we've been badly burned, we simply can not wrap our heads around the concept that the very medicine designed to save our children, so that we can raise them past infancy, could be causing harm.

As long as magazines like Wired are willing to give Dr. Offit an open pulpit from which to preach, the gospel according to Paul will remain intact, and we members of the vaccine safety advocacy community will remain the heretics seated in the pews of the Church of the Poisoned Mind.

Ozem Goldwire, Autistic Man, Receives Settlement For Coerced Murder Confession, Spending Year In Jail

2009-11-25T15:12:55Z

NEW YORK — The City of New York has agreed to pay $340,000 to an autistic man who spent a year in jail after confessing to a killing he didn't commit.

Ozem Goldwire, of Brooklyn, was jailed on charges that he murdered his sister in 2006. His lawyers said police pressured him into a false confession.

Franicisco Hernandez Jr, 13-Year-Old With Asperger's Syndrome, Lived In Subways For 11 Days

2009-11-24T10:00:31Z

NEW YORK — The mother of a 13-year-old boy with Asperger's syndrome who was missing in New York City for 11 days says her son spent the entire time in the subway system.

The boy's mother, Marisela Garcia, feels police were slow to make the case a priority because she's a Mexican immigrant. But police say they contacted the school immediately and leafleted most of the city.

Mom: Marijuana Saved My Autistic Son's Life (VIDEO)

2009-11-23T16:48:45Z

Kids may seem an unlikely group to include in the medical marijuana debate, but some children with autism are reaping life-changing benefits from the drug. Mieko Hester-Perez, a mother in California, told the Early Show's Hattie Kauffman that marijuana saved her son's life.

Hester-Perez's 10-year-old son, Joey, was uninterested in food and weighed a startling 48 pounds. "Everyone that came to my home was watching me watch Joey die," Hester-Perez told Kauffman. "He was deteriorating hourly."

But that all changed with a batch of marijuana brownies. After four years of only eating peanut butter and jelly sandwiches, Joey's appetite came to life and revived him in other ways as well.

"We're seeing Joey come out," Hester-Perez said. "He's never made noises, we didn't even know he could make noise until the first batch of brownies."

While Kauffman noted that there's no evidence of marijuana helping with autism symptoms, other parents have come out with similar success stories, as seen in Marie Myung-Ok Lee's story on Slate's Double X blog in May.

WATCH the Early Show's interview with Hester-Perez:

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Scientific Link To Autism Identified

2009-11-23T14:43:02Z

After careful review of countless scientific studies, The Center's Life Sciences group was able to formulate a scientifically verifiable model for the highly probable causal path of autism.

Kim Stagliano: How Does It Feel To Be Told You Can't Have A Test?

2009-11-20T16:27:24Z

America, how does it feel to wake up and learn that you can't have healthcare tests that you think you or your loved one needs? Welcome to the autism treatment world. Kinda sucks, doesn't it?

This week we learned that neither mammograms nor pap tests are as necessary as previously recommended. So there will be less testing.

I didn't know that the pap smear (scrape?) could lead to procedures that could injure the cervix. But I recall being a young woman and having my gynecologist perform a procedure that hurt like hell - "cauterization," he called it. That's Latin for "insert a small blow torch and press the on button." I was such a poor healthcare consumer it never occurred to me to ask what he was doing or why. The New York Times writes (HERE):

Dr. Iglesia said the argument for changing Pap screening was more compelling than that for cutting back on mammography -- which the obstetricians' group has staunchly opposed -- because there is more potential for harm from the overuse of Pap tests. The reason is that young women are especially prone to develop abnormalities in the cervix that appear to be precancerous, but that will go away if left alone. But when Pap tests find the growths, doctors often remove them, with procedures that can injure the cervix and lead to problems later when a woman becomes pregnant, including premature birth and an increased risk of needing a Caesarean.

Was I one of those women for whom the cauterization was unnecessary, or did that doctor save me from cervical cancer? I have no idea. If you know a woman who died of cervical cancer, these new guidelines will set your hair on fire. If your breast cancer was found on a yearly mammogram I'm sure you're angry too. Understandably so. We each bring our own perspective and needs to this healthcare equation.

In the autism world, there are myriad tests and treatments that are helping ameliorate behaviors and boost progress by addressing the medical conditions that can cause pain, confusion and poor brain functioning. Think of how you feel when you have PMS or a migraine. Could you sit in school all day or take the LSAT's or make a presentation at work if you felt very sick? Of course not. Now try to do it when you have little or no speech to convey how you're feeling. You might scream, or kick or scratch or bang your head.

Some of us know families whose kids have lost their diagnosis and are mainstreamed in school and headed toward full, independent living because of these tests and treatments. For others, this treatment can mean the difference between life in an institution, sedated on powerful medications and life in a group home, among peers and within the community.

And yet - the vast majority of us have no access to this autism medical world because the "powers that be" who control what's recommended and covered tell us the tests fall into the category that is the insurance kiss of death, "not medically necessary." For every Dr. Tim Buie at Mass General Hospital treating the GI problems associated with autism, there are a hundred GI docs and pediatricians who will laugh you out of their office for suggesting that food can affect functioning and behavior. Even the one treatment that is considered scientific, ABA therapy, is often off the table for us when it comes to insurance.

This weekend, The Chicago Tribune will run an article about autism treatments from skeptical point of view. Even after interviewing parents who have changed their children's lives for the better, they'll focus on the few controversial treatments that always get media attention and ignore the real progress. I'm not sure what their agenda is, and why learning that some kids are improving and even losing their autism diagnosis isn't considered worthy of a ticker tape parade on Michigan Avenue.

When you read that article (assuming anyone reads The Trib any longer) think of how you feel knowing that you, your wife, daughter, sister is also losing medical care that could help ensure a healthier, safer life.

By the way, I can help those of you wondering about your next mammogram or pap test. There are three magic words that we in the autism world know all too well: Out of pocket.

David Kirby: Top Autism Panel Backs Research Objectives Mentioning Vaccines -- Dueling Press Releases Ensue

2009-11-13T11:49:32Z

On Tuesday, the Interagency Autism Coordinating Committee (IACC), Washington's leading arbiter for directing federal funds to autism research, unanimously voted to recommend studies that include investigations into possible links between autism and environmental triggers - including vaccines - in certain subsets of children.

The IACC has not yet posted details on what was decided at the meeting, but two opposing autism organizations are already applauding either A) the inclusion of vaccine-autism studies in the federal research plan; or B) the rejection of such studies from the plan - depending on whose statement one reads.

On Wednesday, the nation's largest, most mainstream autism foundation, Autism Speaks, issued a press release under the headline: "IACC Includes Vaccine Research Objective In Strategic Plan For Autism Research - Autism Speaks is Encouraged by New Language Recommending Funding of Vaccine Research."

According to the release, Autism Speaks is pleased with the IACC, which it said "unanimously calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems."

Autism Speaks has reason to support more research in this area. A new, small study in the Journal of Child Neurology shows that mitochondrial dysfunction, vaccine-related fever, and autisitc regression may be related, in some cases.

Researchers looked at 28 children with ASD and mitochondrial disease and found that 17 of them (60.7 percent) had gone through autistic regression, and 12 of the regressive cases happened following fever. Among the 12 children who regressed after fever, a third of them had fever associated with vaccination, as was the case of Hannah Poling v. HHS.

Meanwhile, the Autism Speaks statement rightly noted that Congressional leaders who drafted the Combating Autism Act (CAA) of 2006, specifically said in the floor debate - and colloquy - on the bill that the IACC should use CAA funds to investigate "all possible causes of autism - including vaccines."

But Autism Speaks has a fledgling and Lilliputian rival, spawned in part from the defection of its former spokeswoman, Alison Singer, called the Autism Science Foundation (ASF), formed earlier this year. ASF was founded to study all potential causes of autism, except for vaccines, whose link to the disorder, the new group says, has been thoroughly debunked.

The Autism Science Foundation issued its own press release on the IACC vote, but curiously, instead of protesting the inclusion of vaccine-autism research into the recommendations, the group chose to deny that any such recommendations were actually made in the first place.

"Autism Science Foundation Agrees with Decision to Keep Vaccine Research Out of the IACC Autism Plan," the opposing press release said. "Alison Singer joined her colleagues on the IACC in voting to eliminate references in the autism strategic plan that could imply that vaccines cause autism or that call for additional vaccine research," the ASF release said.

And, Singer added: "Draft materials submitted to the IACC suggesting vaccines and/or vaccine components were implicated in autism were rejected by the committee because the IACC determined that they were not based on good science."

The IACC rejected vaccine-specific studies, but according to Singer, "Two initiatives in the plan, one old and one new, could allow for vaccines to be studied as part of larger environmental initiatives if circumstances warranted."

The IACC, she said, voted to keep previously approved language "calling for studies of environmental exposures outlined in the 2007 IOM report 'Autism and the Environment,' which could include vaccines." The panel also voted unanimously to "add a new objective to study whether or not there are certain subpopulations that are more susceptible to environmental exposures such as immune challenges (including naturally occurring infection, vaccines, and/or immune disorders)."

And, Singer added: "There is nothing in the plan that specifically calls for additional vaccine research because there are no data implicating vaccines as a possible cause of autism." She said that "research on environmental factors is important," without specifying what factors should be research.

And there was this, almost Orwellian statement:

Singer added that some groups seem to be misinterpreting the inclusion of the word 'vaccines' in the list of examples of immune challenges as a mandate for vaccine research, and have issued misleading statements. 'Based on the votes taken yesterday, the IACC was clear in its position about autism and vaccines. But if there is public confusion about this new research objective then I will try to make sure we clarify it at our next meeting.

So, just to recap: The Federal Government's top autism panel has voted unanimously to support studies into autism and its possible environmental triggers - including vaccination. In turn, Autism Speaks has cheered "including vaccine research objectives in the IACC plan" while its supposed rival, ASF, has equally cheered that "vaccine research (is) out of the IACC autism plan."

Some parents I spoke with grudglingly accepted ASF's view of events, however. "IACC took out ALL proposed vaccine research studies; They specifically eliminated A) a vax-unvax study, B) an unvaxed or partially vaxed sibs study and C) an adjuvant study - all gone," said Katie Wright, whose parents founded Autism Speaks after her son was diagnosed with the disorder. "They only left the word "vaccine" in a long laundry list of POTENTIAL future possible (translation never) study topics."

Whether the IACC has recommended specific vaccine-autism research, or environmental-autism research in which vaccines might be included, vaccines remain on the list of possible contributors to autistic regression in some children, at least for now, at the IACC.

And that is just how Congressional leaders intended it to be.

A-List Celebs Line Up For Concert For Autism

2009-11-12T12:15:56Z

What do Jerry Seinfeld, Bruce Springsteen and Donald Trump have in common? They, along with a bunch of other A-List celebrities are making appearances at the Autism Speaks Concert For Autism on November 17 at Carnegie Hall in New York City.

This year's star-studded event will feature comedian Jerry Seinfeld, with a special appearance by "The Boss", Bruce Springsteen. The evening will be hosted by NBC's Meet the Press moderator, David Gregory, on November 17, at world famous landmark Carnegie Hall. Your participation in this global cause will benefit the families and individuals who live with autism every day by supporting research, awareness and family services initiatives.

We love celebrities supporting a good cause and this one has no dearth of them: Jamie Foxx, Ellen DeGeneres, Tina Fey, Conan O'Brien, Seth Rogen, Martha Stewart, Katie Couric, Meredith Vieira, Glenn Close, Celine Dion, Will Ferrell, Edie Falco, Troy Aikman, and Harry Smith are a few of the many committee members supporting the event.

Larry King even twittered about the event earlier today.

Read more about the event at Autismspeaks.org or see if you can snag a few last minute tickets by e-mailing ConcertforAutism@AutismSpeaks.org. The site has some great information about autism and how it affects children and families.

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'I Am Autism' Advocacy Video Draws Controversy

2009-11-09T15:24:23Z

The latest Autism-related controversy stems from a video, "I Am Autism," created for Autism Speaks, the nation's largest autism advocacy group, reports TIME. Directed by Academy Award-winning director Alfonso Cuarón and songwriter Billy Mann, each of whom have a young child with autism, the video has drawn the ire of autistic self-advocates who feel that it portrays the autistic as "burdens and objects of fear and pity."

The video depicts images of children with autism, paired with a menacing voiceover that intones: "I am Autism...I work faster than pediatric AIDS, cancer and diabetes combined...you have no cure for me...I will plot to rob you of your children and dreams. The truth is, I am still winning and you are scared."

Autism Speaks is dedicated to spreading awareness of autism, funding research and advocating for the needs of individuals with autism and their families. However, the video's tone, despite a hopeful ending, has rankled groups such as Ari Ne'eman's Autistic Self Advocacy Network, which has organized protest rallies nationwide, charging that:

Groups like Autism Speaks choose to use fear and stigma to raise money, but very little is going toward services, research into improved educational methodologies and things that have a practical impact on our lives.

WATCH:

Parodies have cropped up, lambasting the Autism Speaks video, with "I Am Autism Speaks" and "I Am Socks" among them.

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Tim Ellis: A Question of Harm -- The Legacy of Vaccination

2009-11-06T17:23:21Z

The Age of Vaccines

In the early '60s, there were approximately 450,000 measles cases and an average of 450 measles-associated deaths reported each year in the United States [1] . The disease had been a killer for centuries, and at its peak an estimated 3-4 million persons in the United States were infected each year, of whom 400-500 died, 48,000 were hospitalized, and another 1,000 developed chronic disability from measles encephalitis. [2] Despite its ubiquity, measles was nothing to sneeze at.

Fortunately, in the face of this danger, American ingenuity once again rose to the occasion, and in 1957 a functional vaccine was produced. [3] Over the following years, a widespread regimen of vaccination was introduced across the country, and the results were nothing short of astounding. By the year 2000, measles had gone from millions of cases annually to being officially declared eliminated in the United States by the CDC. [4]

This is not an isolated result:

- Polio - from 21,000 annual US cases in 1952 to zero today. [5]
- Pertussis (Whooping Coung) - killed between 5,000 and 10,000 annually; now kills approximately 30 annually. [6]
- Smallpox - killed between 300 and 500 million people in the 20th century [7]; certified as completely eliminated by the WHO in 1980. [8]

Look at that last number one more time. Really. From up to 500,000,000 deaths in 100 years, to a planet where nobody will ever die from smallpox again. Ever. This is the legacy of vaccination.

Now, some people are looking to throw it all away.

Thimerosal - The Mercury Factor

Before the early 90s, the average citizen would likely never have heard of thimerosal. Invented by Morris Kharasch at the University of Maryland, and filed for a patent in 1927 [9], thimerosal has been used as a preservative and disinfectant in the health care industry for decades. One of its primary uses has been as a preservative in multi-dose vaccine formulae, where it is used to protect the vaccine batches against infection by Staphylococcus and other bacteria.

Thimerosal is approximately 50% mercury by weight, and metabolizes in the body into ethyl (as opposed to methyl) mercury. [10] Thimerosal is typically included in vaccines at 1 part in 100,000 to 1 part in 10,000, which is sufficient to clear out a wide array of potential infections in the vaccine. Standard vaccine doses for children under 35 months is .25 mL; for children up to 9 years, it is .5 mL. [11] With a thimerosal component of 50 micrograms per .5 mL, that works out to about 12.5 micrograms of mercury in the very young doses and 25 micrograms (the maximum considered safe) for vaccines administered to children up to age 9. [12]

Recently, the inclusion of thimerosal in vaccines has begun to cause concern amongst parents worried about the toxicity of mercury, and its effects on young children. There is even a belief among a small segment of the population that there is a connection between childhood vaccinations and autism, centered around the mercury in thimerosal. Although a 2003 study found that autism spectrum disorders increased both in places where thimerosal use increased (California) and decreased (Sweden and Denmark) [13], authorities in the United States were concerned enough that they began to phase out thimerosal-preserved vaccines. Because of this, today only one childhood vaccine in the United States - influenza, an optional vaccine - contains thimerosal. [14]

A Question of Harm

Nonetheless, the anti-vaccination movement has picked up steam in the past few years, and authorities now believe that pockets of unvaccinated children are forming. This is beginning to have deadly results, as old killers long eradicated from American public life - measles, pertussis - begin to once again strike children down with sickness, even death. [15] Tragically, despite both reduced vaccination rates and removal of thimerosal from childhood vaccines, autism rates continue to climb, indicating the link between thimerosal and autism likely never existed in the first place and making the rejection of vaccinations all the more senseless. [16]

In the end, it is a question of risk. The risk from diseases like measles, rubella, pertussis, diphtheria and more is well documented and deadly, and the tools for fighting them well understood and effective. By contrast, the causes of autism are poorly understood; indeed, almost all we know is that vaccination almost certainly is NOT the cause. To face having to trade dozens of powerful immunities in order to prevent the possibility of autism would be a difficult and unenviable choice; but when we understand that autism rates have continued to climb even in those who take vaccines without thimerosal or who take no vaccines at all, the conclusion is evident.

There is nothing more precious than the life of a child. It is both the right and the responsibility of a parent to follow up on your concerns about the health and welfare of your children. So please, don't take my word for it. Talk to your doctor. Read the studies. Ask the FDA or the CDC. And vaccinate your family. There is no more powerful or effective way of saving a life.

Footnotes

[1] - http://healthvermont.gov/news/2008/051208measles.aspx

[2] - http://www.cdc.gov/vaccines/vpd-vac/measles/faqs-dis-vac-risks.htm

[3] - http://www.answers.com/topic/john-franklin-enders

[4] - http://www.cdc.gov/Features/MeaslesUpdate/

[5] - http://polio.emedtv.com/polio/polio-history.html

[6] - http://www.dcmilitary.com/stories/011708/pentagram_28068.shtml

[7] - http://www.sciencedaily.com/releases/2008/01/080131122956.htm

[8] - http://www.who.int/mediacentre/factsheets/smallpox/en/

[9] - http://www.google.com/patents?vid=1672615

[10] - http://www.fda.gov/biologicsbloodvaccines/safetyavailability/vaccinesafety/ucm096228

[11] - http://www.cdc.gov/FLU/about/qa/vaxadmin.htm

[12] - http://www.fda.gov/biologicsbloodvaccines/safetyavailability/vaccinesafety/ucm096228

[13] - http://www.ajpm-online.net/article/S0749-3797(03)00113-2/abstract

[14] - http://www.fda.gov/biologicsbloodvaccines/safetyavailability/vaccinesafety/ucm096228#t1

[15] - http://www.msnbc.msn.com/id/26333787/

[16] - http://archives.chicagotribune.com/2009/oct/05/science/chi-tc-nw-autism-tribuneoct05

Peter Christian Hall: Thimerosol in Flu Vaccines? America's Mercury Habit is Nothing New

2009-11-06T14:01:43Z

After agonizing over claims that dangerous toxins lurk in swine flu vaccines, Americans are lining up for their shots. That doesn't mean pro-vaccine forces have conclusively won the debate that's been raging on the Internet. People are simply more frightened of swine flu than they are of the (49% mercury) thimerosal that serves to keep bacteria and fungus out of the vaccine.

Mercury is a neurotoxic element that was once known as quicksilver and ranks next to gold at No. 80 on the periodic table. Isaac Newton, the first physicist and creator of the theory of gravity, experimented with quicksilver, even drank it. Some scholars view Newton's workaholism, raging competitiveness, religious fanaticism, and terminal virginity--he died without ever apparently having had sex--as indicators that he suffered from mercury poisoning.

Today the blood of one in three American woman contains detectable levels of mercury.

Mercury floods the atmosphere every time we fire up a coal plant. The neurotoxin rains down on our lakes, rivers, and oceans, tainting the fish we eat and particularly threatening the nerve cells of pregnant women, their fetuses, and young children.

So when was the last time you saw a kid or a woman of childbearing age turn down tuna fish?

Then there are compact fluorescent light bulbs. These contain enough mercury to be labeled dangerous, yet authorities haven't seen fit to come up with safe ways for Americans to turn in their burnouts. Most toss them in the trash, where they inevitably break--bad news for neighbors, passersby, custodians, garbage collectors, and refuse recyclers. (The good news? As long as you personally avoid the toxic fumes, you can relish the notion that less mercury will reach the environment because the bulbs reduce coal consumption.)

For people over 30, mercury is the perhaps-surprising identity of the stuff Moms used to smear on children's skinned and bloody knees. For much of the 20th Century, American wounds were treated with a selection of ever-more painful tinctures. Mercurochrome was the mild reddish stuff made from a compound of mercury and bromine. It stung the least, but plenty of children cried the first few times they experienced it.

As they grew, kids could look forward to an reddish-orange antiseptic that burned a lot more: Merthiolate made them bawl the first few times they experienced it, but the stuff sure killed bacteria and fungus. That's why pharmaceutical companies put it in the vaccines that contain deactivated flu. Yes, Merthiolate happens to be the trade name for...thimerosal.

Few worried about mercury back then. When thermometers broke, kids loved to roll the amazing silvery blobs around in boxes--or in their bare hands. Quicksilver was awesome to behold. Thrilling to touch. And incredibly toxic.

In the 1970s scientists finally began to research potential harm. By the 1990s, it was acknowledged that the mercurial antiseptics were extremely dangerous and should be withdrawn from the market. In response to the same research and a rising tide of complaints that thimerosal in infant and toddler vaccines might be making kids autistic, the Food & Drug Administration swept all but trace elements of himerosal from common vaccines--except for influenza.

The army of autism activists has since mushroomed as diagnoses of the neurological development disorder climbed to number more than 1% of all American kids and teens. The scientific establishment forcefully rejects any association with thimerosal; a simple argument is that if vaccines that contain mercury cause autism, the number of fresh cases ought to have dropped dramatically since 2002.

Is there another explanation? Dr. John J. Cannell of the Vitamin D Council has helped unearth, inspire, and conduct a lot of research into the benefits of Vitamin D--and the risks of not having enough of the powerful natural hormone. (I cite many of them in this entry from American Fever, my online novel about an H5N1 flu pandemic.)

In a paper published online in 2007, Cannell cited numerous examples of the benefits of Vitamin D exposure for pregnant women, including consumption of fish rich in it. And he details the breadth and cost of declining levels of Vitamin D in expectant mothers and other Americans since fear of skin cancer gripped the land.

It's just as possible that sunscreen--and sun avoidance--is causing far more harm than mercury ever did. Not to mention that Cannell thinks healthy Vitamin D levels might help protect against influenza.

Shelley Hendrix Reynolds: A Decade Of Questioning Harm And The Autism-Vaccine Connection

2009-11-04T10:58:51Z

It's hard to run a marathon that pushes you harder than you have ever been pushed -- physically, emotionally and spiritually. One for which you did not train or set out to run but one that you just woke up to find yourself running one day. One that challenges your endurance with every step.

What happens when you turn your head to see how far you have come only to realize you have been jogging in place?

For over a decade, I've relentlessly searched for answers to the connections I believe exist between my son's autism and vaccines he received. Historically, autism has been considered a genetic condition so I am constantly told I just imagined things. Surely his autism was always there...always evident...from birth. Liam must not have been engaged the way that I remember prior to that summer when he received his MMR. He didn't really play peek-a-boo with me. He didn't really talk. He just disappeared at the same time he got his shots but the vaccines didn't do it.

It was coincidence. Coincidence is not the same as causation.

None of those people lived in my home. None of those people knew my child personally when he was a baby. None of those people saw my bright-eyed son disappear into the abyss of autism right before them.

Recently, I dusted off an old videotaped copy of a story that aired on CNN in October 1999 called "A Question of Harm?" - the first nationally televised piece linking a vaccine to autism. I hadn't watched it in a long time. It's painful for a number of reasons. But I took a deep breath and pressed play.

The memories came flooding back. Liam was fine before his MMR and severely affected after.

Eleven years ago, frantic to sound an alarm, I called every network, begging them to help us ask this question -- to warn parents. CDC statistics in 1998 demonstrated one in every 500 children with autism, a staggering increase from one in 10,000 in ten years. No one would listen.

Their response? "We already did a story on autism this year. Sorry."

But Julie Powell, a CNN producer, stepped up. She took a big risk. 15 months later she, and correspondent Linda Patillo, bravely let America and thirty-three other countries know there just might be a question of harm with vaccines for some children. They helped us ask what if.

What if a potential connection exists between vaccines and the development of autism?

Here is their segment.

Part One:

Part Two:

When I look back over the decade, I see enormous progress in Liam's development. He is now in a sixth grade classroom, unassisted except for a modified curriculum -- making good grades. He is sweet, gentle, thoughtful and caring. He has an enormous appetite for learning and a hope for his future. He has a social life complete with a girlfriend, a Facebook account and a cell phone. He just tried out for the basketball team. He lights up every room he enters. He is an inspiration to me, loved by anyone who knows him.

Liam is my Gatorade. He keeps me running when I get light-headed and dizzy. He is my coach. He is my cheerleader.

But when I look back over the last ten years of the autism/vaccine controversy -- or just the safety of vaccine in general, especially from the perspective of the media, I don't see the same progress. The media has not advanced the ball following this developing story in the way I had hoped.

As I replayed the tape, I thought this could have been filmed today, in October of 2009, in any other three year old's house. Today's media repeats the script Julie developed but includes new faces. Child is fine. Child gets vaccine. Child develops autism. Parents cry. Child stares into space then cut to scene of child stacking blocks with his therapist. Doctors still say we don't know what causes autism, except now they affirmatively add -- "but it's not vaccines." Parents rally. Government officials still tout the safety of all vaccines. Health agencies are still trying to figure out how many kids with autism there are out there. Doctors are better at diagnosing, or maybe not. They don't know. Congress is still holding hearings on the issue. Parents still wonder when someone will answer their questions.

Fade to black.

I wondered -- where are the brave investigative journalists we need to ask these hard questions?

There are a couple that will pick up the ball like David Kirby or Sharryl Atkisson but the majority of the reporters that cover these stories are like Amy Wallace, entertainment reporter for Wired Magazine, who, in my opinion once again does not question what she is told, she just regurgitates the propaganda she receives from the vaccine industry and industry supporters. Or Nancy Snyderman who tells us it is not our job to question the safety of shots and to "just get the damn vaccine!"

In the meantime, while we wait for mainstream media to really honestly take a look at these questions, thousands of families, a few politicians, a handful of researchers and doctors across the United States work hard to sound that alarm. These people keep this issue burning bright in the media even when the medical community tells everyone to look away from the light. Vaccines, and their risks, are touched on in a variety of news mediums.

Time marches on and the mainstream media continues to follow that recipe handed down 10 years ago.

Where CNN delivered fresh journalism in 1999, stories today are stale, even moldy. Generally speaking, the media doesn't dig. They do not do their job and ask the questions that make government officials, PhRMA spokespeople or the American Academy of Pediatrics squirm. Now that's entertainment, Amy.

Here are some questions for the White House Press Corps the next time they attend a briefing regarding Swine Flu.

"President Obama, can you please explain why HHS, along with the local and federal law enforcement agencies would not allow a person to pour Thimerosal (an ingredient in some vaccines which contains ethyl-mercury) onto the stone plaza outside the HHS building in protest because it is classified as hazardous waste?"

"Did you know if the amount of ethyl-mercury in one dose of a Thimerosal containing H1N1 vaccine were spilled on the ground HazMat would be required to clean it up?"

"Do you find it logically inconsistent that something is toxic and hazardous to humans when on pavement but not when injected into babies?"

"Why is your administration recommending children and pregnant women receive flu vaccines containing 25 micrograms of ethylmercury each, dismissing any harm to humans when 25 micrograms of ethylmercury is well in excess of what the EPA considers hazardous and the manufacturer of Thimerosal says it should not be injected into humans period, rather than mandating Thimerosal free vaccines for this population?"

"Ok, regardless of whatever study might be cited, do you think injecting a baby with something that bears a skull and crossbone symbol on the label is prudent?"

The basic question of harm asked all those years ago, "Can a vaccine, multiple vaccines, or the ingredients within those vaccines, serve as an environmental trigger for autism in a certain cohort of children?" has not been answered...completely.

From time to time, answers do roll in.

Just last month, researchers from Stony Brook University published a research abstract for an epidemiological study in the September 2009 issue of Annals of Epidemiology which revealed findings suggesting that U.S. male newborns vaccinated with Hepatitis B vaccine had a three-fold greater risk of autism spectrum disorders. Additionally, an upcoming collaborative study conducted by the University of Pittsburgh - School of Medicine, the University of Kentucky and Thoughtful House Center for Children in Austin, Texas reveals evidence of substantial functional brain damage in infant primates who received the birth dose of Hepatitis B Vaccine.

Why isn't this information scrolling across the news networks so parents can make informed decisions?

I don't believe I was truly afforded a fully, informed choice for Liam with regard to vaccination. The risk of this medical procedure that altered a significant system within his body, the immune system, was completely downplayed and presented as a simple baby milestone, a rite of passage. If I had taken the time to just read a package insert for the vaccine, I might have thought about researching it more. I scrutinized the package insert that came with his antibiotics, it just never occurred to me to question the harm a vaccine could potentially cause.

I am tired. I am out of breath. Some days I can only see a couple sips left in the bottom of my Gatorade bottle. But I won't quit running for that yellow tape at the end. I cannot quit this race.

I will not stop fighting for the answers to the truth about what happened to Liam.

I will not quit pressing government officials or medical professionals because those questions make them feel uncomfortable.

I will not quit demanding the media to ask the hard questions.

I will feel sick every time the CDC releases new numbers reflecting the prevalence of autism which has moved from 1:500 to 1:250 to 1:166 to 1:150 to 1:91 since Liam was diagnosed.

I will scream every time they tell me the one in 58 boys today with autism does not reflect a true increase but is primarily due to better diagnosis.

I will grit my teeth every time the same medical community that is now apparently so good at diagnosing can't find those same autism diagnoses in one of every 58 adult men.

I will hit my couch every time I hear some doctor on a news program say that this question has been asked and answered.

I will cringe when I hear a pregnant woman say "I got my flu shot today."

I will hold the United States Government accountable for fiddling while Rome burns all around them with our future generations.

I will wince every time I hear someone say "We don't know what causes autism. But we do know it is not the vaccines." When I know in my heart, it really is just not truthfully scratched off their list.

And I will still maintain that giving children mercury, on purpose, for no other reason than to preserve profit margin, is stupid.

A question of harm? Yes.

Harm exists in refusing to continue to dig down into hardcore science. Harm exists in refusing to look at the science at a cellular and biological level. Harm exists in continuing to wave the banner of epidemiological statistics as unrefuted proof of safety and to demonstrate that what we saw happen before our eyes with our children could not have happened. Harm exists in the arrogance of the government, the scientific and the medical community who refuse to listen to parents accounts.

Where harm does not exist is in continuing to look under the vaccine rock to find out why parents believe this is happening. That's what good scientists do -- they continue to ask questions, peeling back all the layers until there is an answer.

Genetics alone has not caused autism to increase from an incidence of 1:10,000 to 1:91 in a twenty year period. I asked the CDC earlier this month to let us know of one other genetic condition that had ever demonstrated that exponential growth rate. They were stumped. Something environmental is causing this. Something universally environmental even though we all eat different food, drink different water and breathe different air.

We are far from having an answer. But if the media will ask new hard questions, those questions may provide a base to a solution. Maybe if the media attacks autism with the same sense of urgency that they have the Swine Flu now that 1:58 boys are being diagnosed with it, one day soon we will have the answers we seek as to what happened to our children.

On that day, I will say "I fought the good fight. I have finished the race. I kept the faith."

In the meantime, thank God for blogs.

This column is dedicated to Liz Birt. She was a relentless advocate searching for answers to the question of harm when it comes to vaccines and autism. I didn't know her personally yet at the time this was filmed. I met her the weekend that this aired in Cherryhill, New Jersey at the Defeat Autism Now Conference . Her letter is the email I read during this piece. Her sweet son Matthew is the boy in the picture. We lost Liz too soon. I miss her dearly. Her legacy lives on. A donation she made to Thoughtful House helped make the aforementioned primate study possible.

Dr. Cara Natterson: The (New) Great Debate

2009-11-04T10:20:47Z

When I was in high school, the debate over abortion reached its first climax. Pro Choicers and Right to Lifers clashed at every possible turn: on the front pages of newspapers, in the courtroom, on street corners and even on the Mall in Washington. As the discourse evolved and grew like a furious dust bunny with slightly gross and sometimes unpredictable contents, one fact always seemed consistent: the Pro Choice camp and the Pro Life camp never actually debated.

Sure, they disagreed about a lot. And representatives from each group appeared all over the media in face-offs. But they never really talked to each other; instead, they talked over and under and around each other. They never had to really debate because their premises were so totally different. The Right to Life movement was founded on the belief that life begins at conception, and so they argued that abortion was murder. The Pro Choice movement patently disagreed: life does not begin at conception; if anyone's "life" was on the line, it was that of a pregnant woman (and by this they clearly meant the quality of her life, the likelihood that she would attain the degree or job or future she desired). Precisely because of this fundamental difference in starting point, the Pro Choice movement never really had to even engage in the murder conversation. How could it be murder when there wasn't anyone being killed?

The national conversation about vaccination is starting to feel an awful lot like the talk about abortion felt 25 years ago. There is no real argument between the two camps -- they don't really even address the same issues. Sure, experts from both poles appear on morning shows, daytime talk, and evening news panels. Often a voice of moderation -- someone who is supposed to represent the middle -- is added into the mix as well. But the middle of what?

The groups that oppose vaccination have lots to say about it. Among other things, they contend that immunizations don't necessarily work; they trigger a host of other problems from autoimmune disorders to autism; and they ultimately represent a massive game designed for pharmaceutical industry profit, within which doctors are sometimes pawns, sometimes profiteers. But going beyond the details, the anti-vaccine movement is really about individual choice. I don't have to do what you say. I don't have to give my children shots if I don't want to. The world is not as scary as you fill-in-the-blank (with doctors, scientists, government officials, even other parents) say it is. I have the right to choose what goes into my body -- and my child's body -- and I say no to vaccines.

The pro-vaccine camp has answers to each of these claims -- just like the Pro Choicers had with the Pro Lifers--but their fundamental argument is totally different. At its core, theirs is not an individual argument but a social one. Where the anti-vaccine subscribers see trees, the pro-vaccine enthusiasts see forests. If we stop vaccinating, diseases we no longer fear (because they are all but gone) will be back. We have a social responsibility to vaccinate, they contend. When your child is not protected against measles and none of her classmates are either, then measles will return and there will be consequences. Some will get sick; kids will miss school; adults will miss work; people will be hospitalized; some will die. This risk of acquiring a vaccine-preventable disease threatens your child individually but it also looms over society as a whole.

These two camps believe so firmly in their mission statements that there is no conversation to be had. Parents used to ask me whether I vaccinated my children as a point of interest, as if the pediatrician's input might have some bearing if she was willing to give her own children immunizations. Today, when I am asked the question (and the answer for me is a resounding yes), I have become accustomed to hearing some variation on the following theme: Why? Weren't you afraid you were going to give your children autism? They aren't asking my opinion anymore -- they are staking their claim. People self-identify as for or against, oftentimes before their first child is even born. Almost certainly before they have read any actual scientific data.

The difference here -- the reason that this is not -- the same as the abortion debate -- is that there is a gigantic group of people stuck in the gray zone. They are caught in the middle with no idea what to do. They cannot rely upon hearing opposing views in order to reach a decision because the views don't talk to each other. And so they are left at loose ends, completely confused and many of them scared. The difference is that this isn't some theoretical conversation about "What if I was pregnant and 16, what would I do?" but rather this is a very real decision that every one of the 4 million new parents in this country need to make every year. And they don't just make it once, they make it 25 or 30 times, each time a child is scheduled to have a particular vaccine.

The great travesty here is that we are not debating. It's us versus them. And just like with abortion, if the default answer is no, don't give it to me, then there will be consequences. In my office, when parents tell me they just want to wait before they give their children vaccines, I explain that this is a choice not to vaccinate. They don't like hearing that -- most of them really do want to have more time. But just like a pregnant woman who says no to abortion winds up with a baby, a parent who says no to immunizations may wind up with a sick baby. They just don't tend to think about it that way.

Autistic Artist Draws Manhattan Skyline From Memory

2009-10-27T16:52:03Z

Wiltshire -- diagnosed with autism at the age of three -- displays an unusually powerful photographic memory that he has applied to rendering cityscapes.

Autistic Artist Stephen Wiltshire Draws NYC From Memory

2009-10-26T18:07:52Z

Stephen Wiltshire was mute when he was diagnosed with severe autism at the age of three. He began communicating through his drawings after being sent to Queensmill School in London, and with the support of his special-needs teachers, gradually learned to speak.

It was during those school years that they discovered Stephen's special talent, when he drew the ornate Albert Hall following a class field trip -- without the aid of a photograph. Wiltshire has the uncanny ability to draw and paint detailed landscapes and cityscapes entirely from memory.

Wiltshire can look at the subject of his drawing once and reproduce it accurately with photographic detail, down to the exact number of columns or windows on a building. He memorizes their shapes, locations and the architectural flourishes, and will do so with New York City after a brief helicopter ride.

Having tackled the iconic cities of Tokyo, Rome, Hong Kong, Frankfurt, Madrid, Dubai, Jerusalem and London, Wiltshire is more than ready to take on The Big Apple and has already begun drawing the cityscape in pen.

WATCH:

Watch the live-stream of Stephen drawing the panoramic cityscape of New York here.

Art and Autism: The link between autism and the arts has been known for many years, with art therapy being a beneficial treatment for individuals with autism and related disabilities. The arts can help autistic children express themselves and interact with others, as it did in Stephen's case.

Art Therapy and Autism: Resources

The Stephen Wiltshire Gallery has prints available here. Profits from sales are donated towards childrens' charities, art education organizations and The Stephen Wiltshire Trust Fund where Stephen funds his ongoing studies from.

Robyn O'Brien: Our Kids: More Than a Sales Channel for Big Pharma

2009-10-22T16:47:04Z

According to Dr. Alan Greene, two-thirds of high school students have either high blood pressure, high cholesterol, or diabetes, predisposing them to a lifetime of chronic conditions. And a recent report from the Centers for Disease Control shows an eye-popping 265% increase in the rates of hospitalizations related to food allergic reactions.

According to Dr. Kenneth Bock, genetics don't change that quickly. Environment does. And while we've got 80,000 chemicals in our everyday products here in the US, the EPA has required testing on only 200 existing chemicals and restricted only five of them, despite the fact thousands of them have been banned, removed or restricted from children's products in developed countries around the world.

Is it any wonder that the health of American children is under siege?

Evidence continues to mount over the impact that environmental toxins contained in vaccines, foods and sippy cups are having on our health. On any given day, an American child might be exposed to formaldehyde in a flu vaccine, endocrine-disrupting bisphenol-A in a sippy cup, and insecticidal proteins in high fructose corn syrup, presenting a stunning assault on the developing immune system of a child.

And rather than prevent and protect, as governments around the world have done, we prescribe: insulin pumps, epinephrine injectors and asthma inhalers in record numbers to the American children.

So while Mexico bans endocrine-disrupting chemicals from their plastics due to the harm they've been shown to present to the reproductive system in children, American children are experiencing early onset puberty. And while France bans corn that has been genetically mutated to contain insecticidal proteins designed to create neurological and gastrointestinal damage to the creatures that eat it, 1 in 3 American children now has allergies, asthma, ADHD or autism, and the Corn Refiners Association of America insists that one of corn's derivatives, high fructose corn syrup, banned in other developed countries, is "natural." And while other developed countries offer a delayed vaccination schedule, our children are being injected with compounds whose safey has not yet been tested in combination.

With the environmental assault on the health of our children, is it any wonder that health care related costs now contribute 17% to our nation's GDP?

While our children may be viewed as an earnings stream for epinephrine injectors, insulin pumps and asthma inhalers, perhaps we should also view them as our 'canaries in the coalmine.' They just may be trying to warn us of the environmental dangers in front of all of us.

To learn what you can do to help protect the health of our children, please click here to learn more about the Kids Safe Chemical Act and how you can Do One Thing.

Together, we can restore the health of our children.

David Kirby: NIH Director Francis Collins Blames Resignation Of Top Health Official From Autism Panel On "Tension And Lack Of Trust"

2009-10-20T23:05:24Z

On Saturday, Story Landis, PhD, director of the National Institute of Neurological Disorders and Stroke, an agency of the National Institutes of Health, abruptly resigned from the federal government's premiere autism research panel - the Interagency Autism Coordinating Committee (IACC) - citing embarrassing notes she had left behind at a recent meeting.

But now, the Director of the NIH, Francis Collins, has come forth to blame "tension and a lack of trust," (presumably among autism parents) for forcing Dr. Landis's resignation.

Dr. Landis resigned from the powerful panel on Saturday after the Age of Autism blog published handwritten notes - assumed to be written by Dr. Landis - speculating on the motives of an autism mother and IACC member, Lyn Redwood - who wanted research into autism as a multisystem biological disorder, as opposed to a purely mental health disorder.

For more details on Dr. Landis's resignation from the IACC, see here.

Meanwhile, Dr, Francis Collins, head of the NIH, has spoken out on the resignation of Dr. Landis from the IACC, in a video clip posted by the Simons Foundation Autism Research Initiative.

Dr. Collins called autism a "disease" (as opposed to a disorder) that "ravages" children, and conceded that parents have "understandably" been left frustrated and impatient. He also rightly stated that we need to "poke around in every possible way" and not assume that there is just "one path" to solving the riddle that is autism.

But, some parents also wonder, was the NIH Director admonishing them for making Dr. Landis feel it was "necessary" for her to resign from the IACC? Was Collins also demanding that parents "step back" from pressuring federal offcials to find the cause of their children's disease?

It is not possible to tell from his rather vague comments. I will ask for a follow up interview to elicit more context for his remarks, which were as follows:

Clearly the area of autism is one where great passions have come to bear, and you can understand that. Parents who have kids with this disease, who have seen every day the ravages that this has brought down upon the heads of their child and on themselves, are impatient, and understandably so. Frustrated, and understandably so. And different perspectives about what is the right direction to take have certainly bubbled up at the IACC at times, in a rather tense way.

The recent experience where Dr Landis found it necessary to resign from the IACC is just one example of the level of tension and lack of trust that seems to have appeared in that environment. My hope would be that this experience might cause people to step back a little bit from the intense battles that seem to be going on and say, "Wait a minute, what can we really do here that is the right thing to do to get the answers?" That's what we all want. I know that is what everybody wants. We don't know what the answers are right now. And so it's critical to poke around in every possible way that might give those answers, and not assume that there's just one path that's going to get to the truth.

Time will tell if Collins is able to resolve all the "tension" and "lack of trust" at the IACC, but he has his work cut out for him.

"This is disingenuous condescension on the part of Collins. Step back? Who manipulated the agenda, both procedurally and substantively, to make sure vaccine research would not happen?" Robert Krakow, an attorney and the father of a child with regressive autism told me.

"Step back?" Krakow continued. "After years of inaction? My reaction to Collins is that we should step up, not back, and intensify our advocacy, not temper it. His words are too little, too late for us to put our trust in the NIH. They have had their chance. They have lost our trust. Now someone at NIH needs to step up to do the right thing. That burden should not be on beleaguered parents who are seeking answers from the 'experts.'"

And Sallie Bernard, an autism parent with the Coalition for SAFE MINDS, attributed parental impatience and frustration to "15 years of NIH autism plans and millions spent with only modest, incremental advances. We are at 1 in 100 children and NIH can't explain why. Instead of asking parents to 'step back,' he should acknowledge the failures in NIH leadership, such as telling Congress that no extra money is needed for autism research. Dr. Collins could send a welcome signal to parents that NIH will do the right thing by finally holding its autism team accountable for real progress."

On the other hand, Dr. Collins may end up being more in agreement with these parents than other leading medical figures in the country, who still insist - despite mountains of evidence to the contrary - that the answers to autism's mysteries lie almost exclusively in the human genome.

On Sunday, Dr. Collins gave a speech at the Society for Neuroscience meeting in Chicago, and, if you were to judge solely by the article written by Virginia Hughes on the website of the Simons Foundation, you would surmise that his autism research focus is almost exclusively centered around genetics.

"Collins was head of the National Human Genome Research Institute for 15 years, and led the high-profile Human Genome Project, so he is no stranger to the limelight," Hughes fairly gushed. "But as head of the NIH, in charge of a $31 billion annual budget, he is a powerful man with big ambitions."

During his speech in Chicago, Collins spent a good deal of time talking about autism, "a disease of great public concern and great scientific puzzlement," as he put it. And, as Hughes wrote, "He said that high-throughput technology has already identified more than 50 (genetic) variations, both rare and common, linked to autism spectrum disorders. He added that $30 million dollars of funds from the American Recovery and Reinvestment Act will be used for full sequencing of target genes and, for a few individuals with the disorder, whole-genome sequencing."

But Hughes did not write about Dr. Collins's dedication to studying environmental factors in autism as well. In another video clip of his interview with the Simons Foundation, the NIH Chief had this to say:

There have been some insights, in some cases of children, of environmental or genetic contributions, but more still remain unexplained. But, in part due to the Recovery Act, NIH is beefing up its autism research to a considerable extent in several areas. One is to look at environmental factors that might play a role that haven't been discovered. Another area is to study the interventions that have been proposed to see which ones work best for children with autism. And a third is to try to understand what the genetic influences might be.... But it may be that autism at the DNA level is not one disease, but it may be 100 or 1,000 different diseases, all of which have in common this effect on the brain.

This wasn't the first time that Dr. Collins has recognized that autism "must" have environmental as well as genetic influences. Back in 2006, while testifying before the House and Senate Subcommittees on Labor-HHS-Education Appropriations, he said the following:

Genes alone do not tell the whole story. Recent increases in chronic diseases like diabetes, childhood asthma, obesity or autism cannot be due to major shifts in the human gene pool as those changes take much more time to occur. They must be due to changes in the environment, including diet and physical activity, which may produce disease in genetically predisposed persons. Therefore, GEI (NIH's Genes and Environment Initiative) will also invest in innovative new technologies/sensors to measure environmental toxins, dietary intake and physical activity, and using new tools of genomics, proteomics, and understanding metabolism rates to determine an individual's biological response to those influences.

Dr. Collins is on the record: 1) He recognizes that at least some autism cases have been associated with environmental influences, 2) He wants to study all potential environmental factors in autism, including toxins, and 3) He wants to study "proposed interventions" that can actually help those with autism -- which he called a "disease" -- get better.

It is not clear exactly to whom Dr. Collins was speaking when he said to "step back" from the tensions at the Interagency Autism Coordinating Committee. But I do hope he will "step up" to convince scientists that the search for answers to autism's "mysteries" is to be conducted as much in our modern environment than in our DNA.

This post originally appeared on the Age of Autism site.

Robyn O'Brien: Cloudy With a Chance of Allergies or Autism?

2009-10-20T16:23:13Z

Ever wonder what this food fiasco is costing us? You and me? Taxpayers? Well, the Economist recently assembled these jaw-dropping food safety stats in a "Farm to Fork" article in their October 9 issue:

1. There are 26,000 food poisoning cases per 100,000 Americans, every year (an eye-popping 26% of the population)

2. Compare that to only 3,400 cases in the UK, and just 1,200 in France. Stunning.

3. 76 million Americans become ill with food poisoning. That's as if every child in America were to get sick. All 75 million of them. And then some.

4. Insufficient food safety is costing the US $35 Billion a year (as a benchmark, the entire 2009 budget for the FDA was only $2.4 Billion).

According to the article, "the wave of food scares that has swept America over the past few years has caused a crisis in the country's $1 trillion food industry" and is resulting in a food fight of epic proportions.

With Michael Pollan on the frontline, we've also got Bill Gates touring the globe, espousing the benefits of "technofood" as Chief Technology Advocate of food's operating system (Monsanto's genetically engineered, patented and licensed, biotechnology food proteins).

While the recent introduction of "technofood" and the insertion of foreign proteins into our food supply (which began in 1994) has benefited agrichemical shareholders, 300 million stakeholders in the American food supply are seeing inflammatory reactions to food at record rates and the landscape of children's health has changed.

So, perhaps as we listen to these men, we should also listen to the voices of our children as the EPA calls for grant solicitations to study these genetically engineered plant-induced food allergies, and pause and observe the unforeseen consequences that these foreign proteins appear to be presenting in the 1 in 3 American children with autism, allergies, ADHD or asthma.

Before proceeding further with "technofood" and its licensed-for-profit and novel operating system, perhaps we should stop and listen to our 'canaries in the coalmine' who may be trying to sound food's "Dange-ometer".

David Kirby: Is Autism Associated with A Viral Infection?

2009-10-12T11:51:57Z

Last week, 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% of patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a debilitating neuro-immune disease impacting more than a million people in the United States.

The finding, published in the highly respected journal Science, "clearly points to the retrovirus as a significant contributing factor in this illness," said lead author Judy Mikovits, Ph.D., director of research for the Whittemore Peterson Institute for Neuro-Immune Disease, which is affiliated with the University of Nevada, Reno. It was the first study to isolate particles of the retrovirus, XMRV, in human blood and demonstrate that it is transmitted between blood cells. XMRV was first discovered in prostate cancer tissue of men with certain genetic defects. Like the more well-known retrovirus, HIV, this pathogen is blood-borne, and not transmitted through the air.

The findings have potential significance for a number of other disorders including, it turns out, autism.

Researchers tested blood samples from a "small group of children" with autism and found that 40% of them were positive for XMRV, according to a statement from the Nevada Commission on Autism Spectrum Disorders. More testing is underway which, the Commission said, "could dramatically increase that 40% positive finding." (Given the small sample size, such a statement is purely speculative).

As Dr. Mikovits explained to a television news program in Nevada, "It is not in the paper and not reported, but we have actually done some of these studies (in ASD children) and found the virus in a significant number of samples that we have tested for. It could be linked to a number of neuro-immune diseases, including autism. It certainly won't be all, because there are genetic defects that result in autism. But there are also the environmental effects; there is always the hypothesis that, 'My child was fine and then they got sick, and then they got autism.'"

According to Dr. Mikovits, XMRV (which admittedly sounds like a satellite radio system for your Winnebago) can lie dormant in people, until it is "turned on or off" by other factors, such as stress hormones like cortisol, or in response to the presence of inflammatory "cytokines," protein molecules secreted by immune cells to help regulate the immune system.

And then Dr. Mikovits dropped a bombshell that is sure to spark controversy.

"On that note, if I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."

So there you have it - a possible explanation of regressive autism in a significant number of cases associated with immune system deregulation triggered by vaccination.

Of course, much more work is needed to nail down the exact significance of such an association. For example, is the virus implicated in the cause of autism, or do children harbor the virus as a result of autism?

Either way, it is notable that such questions are being asked by mainstream sources such as the University of Nevada, and by extension the NCI and the Cleveland Clinic: Can XMRV infection plus vaccination create the right conditions for regressive autism? That remains to be seen. But it also means that the thousands of parents who claim their children did regress shortly after vaccination may not be so crazy and "fringe" as they have been portrayed by experts such as Dr. Paul Offit of Children's Hospital of Philadelphia and Dr. Thomas Insel, head of the National Institute of Mental Health and Chair of the federal Interagency Autism Coordinating Committee (IACC).

"We certainly are advocating vaccinations and how important those are to the well being of the children," explained Annette Whittemore, founder of the Whittemore Peterson Institute.

"But what we are hoping for is, by finding out whether or not one is positive to XMRV, whether it is in one family member or another, and then looking for it in children, you could alter the immune response in such a way that you can protect the child and still be able to vaccinate and avoid autism in these kids. And again, I don't think ether one of us is sitting here saying, 'Vaccinations cause autism,' but rather a number of factors; a genetic susceptibility to the illness, to the infection itself, and then on top of that you are adding something to that mix that takes that child over the top."

Apparently, the CFS findings have impressed the scientific community. "We presented these data three times: Twice at closed conferences at the NIH, and one at an international meeting a few weeks ago, and you could hear a pin drop in the audience - it's amazement" Mikovits said. "The scientists are excited, everyone is working on it, so we know we are going to get a lot of help. It's just amazement, it's an entirely new field of medicine and everyone who's ever worked in this family of viruses is, now that we've shown it's a human pathogen, is extremely excited."

Whittemore added that researchers hoped to develop a vaccine against XMRV quickly, noting that "It would be easier to find a vaccine against this than HIV, because it is a simple retrovirus."

The discovery raises more questions than it answers. What, exactly, is it about immunization that might switch on XMRV viral expression? Could the effect of heavy metals upon cytokine balances be at play? Where did this retrovirus come from, and how did it apparently become so prevalent in children with autism? Did these children inherit the virus from a parent, or was there some other unexplained route of transmission? Why has the NIH said nothing about XMRV in association with autism, and did Dr. Insel know about these findings without sharing them with the IACC?

Finally, Dr. Insel has said that a vaccine against autism may one day be developed. Was he actually referring to a vaccine against XMRV, and what role, if any, might he or members of his family play in the development of such a vaccine?

According to Insel's own biography, in 1994, he went to Emory University, Atlanta as a Professor in the Department of Psychiatry, and Director of the Yerkes Regional Primate Research Center. "As director of Yerkes," his bio says, "Dr. Insel built one of the nation's leading HIV vaccine research programs."

David Kirby: Do You Believe that One In 60 American Males Has Autism?

2009-10-09T17:06:59Z

It amazes me to see that the Obama Administration and mainstream media have been rather nonchalant about the startling news that 1-in-100 American children - and perhaps around 1-in-60 boys - have an autism spectrum disorder.

On Friday, Health and Human Services Secretary Kathleen Sebelius told listeners on a conference call about an upcoming CDC study showing that the estimated rate of autism increased by about 50% among children living in study locations who were born in 1994, compared with those born in 1996.

Among children studied in select areas around the country, the CDC found an average ASD rate of 66-per-10,000 (1-in-150) in the 1994 cohort, but this jumped to somewhere "around one percent," or 100-per-10,000 (1-in-100), in children born just two years later. (Keep in mind that the 1996 data pertain to 13-year-olds today; officials say they cannot tell us the rate among children younger than that).

Males are four times more likely to have an ASD. So extrapolating from the CDC data, among 15-year-old boys, the estiimated US rate is 102-per-10,000 (1-in-98), but among 13-year-old boys, it would appear to be somewhere around 167-per-10,000, or 1-in-60.

Sebelius said the government does not know if the actual rate has gone up, "and we are hoping to unlock these mysteries."

Meanwhile, some experts seemingly want to brush this increase off as a mere artifact of better reporting, wider diagnostic criteria, greater awareness and early intervention programs among younger children. They don't seem to feel that rising levels of environmental toxic exposures in genetically susceptible children might also be at play here. Some have called it "good news" that doctors are now so proficient at diagnosing the milder forms of ASD.

But these children were diagnosed, on average, in 1999 and 2001, respectively - which was quite a bit after the ASD classification was expanded (in the public schools and in the DSM-IV) to include Asperger syndrome and pervasive developmental disorder - not otherwise specified, or PDD-NOS.

Moreover, these boys were 8 years old when they were studied, so early intervention might not be a major reason for the increase. And while greater awareness and better reporting and record keeping have undoubtedly boosted the numbers, it is hard to see how this could explain the entire increase over the years.

We must wait until the final study is published, of course. Unfortunately, the CDC has not always tracked the exact same sites every study cycle. But among the six sites that were included in the 1992 and 1994 cohorts, the reported rate increased by 10 percent. It bears watching to see what happened in those same six sites among the 1996 cohort.

In order to accept that actual ASD rates have not gone up at all, one must also now acknowledge that the ASD rate among US males has always been at or around 167-per-10,000, and that all lower estimates were mistaken and all of those missing people went undiagnosed or misdiagnosed.

But how is it possible that tens of thousands of parents - not to mention relatives, teachers, schools, nurses, counselors, clinicians and pediatricians - could miss so many of the 15-year-old boys with ASD in their midst, but can detect ASD in more 13-year olds? It is hard to understand why more parents of the 1994 cohort would fail to get autism services for their children, compared with parents of children born just two years later.

In my opinion, to shrug and treat this story as if things have probably always been this way is, frankly, wishful thinking and unsettling.

Officlals who say the numbers have not gone up are, in effect, telling pregnant women that if they are having a boy, there is a 1-in-60 chance he will have ASD - but not to worry, because it has probably always been this way, we just never noticed. Autism is very common; it is just part of the human condition.

Many will call me an alarmist, but I believe that 1-in-60 boys with an autism spectrum disorder is a national crisis - and not just a reassuring confirmation of how things have always been.

So, if you believe that autism rates are not increasing, then you must also believe that roughly 1-in-60 American males - of all ages -- have an ASD.

Do you really believe that 1 in 60 American men are autistic?

That would mean some 2.55 million American males with autism, which is roughly the size of Nevada.

I have lived in many different cities, worked at nine different jobs, and met thousands of men and women throughout my years. I cannot recall people who showed the characteristics of high-functioning autism, though I must have met some along the way, at least in passing. But there were not 1-in-60 boys with ASD in my schools and there are not 1-in-60 men with ASD in my area. I think I would have noticed them by now.

I also spend time speaking with teachers and special education administrators who have been in the business for decades. One of them said she had surveyed every single long-term teacher she had worked with (those with 20, 30, or even 40 years on the job), "and every single one of them said that these kids just weren't there in anywhere near these numbers when they started teaching - under any diagnosis."

And Anne Dachel, a Wisconsin mother of an autistic son, a national advocate, and a teacher who works extensively with ASD students, said it was "an insult to thousands of teachers and counselors and doctors - who apparently 'stupidly' ignored these kids in the past. If they were always here, but we just called them something else, then what did we do with them? We would have had to provide services even if the kids weren't called 'autistic.' So why are there waiting lists for services and more and more of a demand for special education teachers?"

Anne also frets that the new ASD numbers are "being presented as good news," in some media, she said. "Autism hasn't increased--we just never realized how common it really is. No official ever calls autism a crisis, no matter how bad the numbers get."

Finally, if you can explain away an increase in autism, you can also ignore the mounting evidence and growing belief among some scientists that autism likely has an environmental component, and that certain environmental exposores have been on the increase in recent years. You can also ignore the growing clinical, animal and epidemiological evidence to suggest that mercury, other heavy metals and other environmental toxins might increase the risk of ASD in genetically susceptible subpopulations.

Consider mercury. Rising levels have been documented in rivers, lakes and waterways nationwide, and rising levels in humans is now a sad and terrifying fact as well. A new study has shown that inorganic mercury was detected in the blood of 30 percent of US women in the CDC's most recent National Health and Nutrition Examination Survey (NHANES). That figure was 1,500 percent higher than what was reported in the 1999-2000 survey, when only 2% of women had inorganic mercury in their blood. And though these figures post-date the 1996 birth cohort, they do indicate steadily rising levels of background mercury over the years.

Other studies have shown an association between exposures to heavy metals and other toxins and autism risk. A paper published this year in Neurotoxocology showed a higher rate of ASD in schools located near Minnesota superfund sites, which typically contain high levels of "lead, mercury, cadmium, chromium and arsenic."

Another CDC-funded study found that children born in the most polluted tracts of the San Francisco Bay Area were 50% more likely to have an ASD. "The individual compounds that contributed most to these associations included mercury, cadmium, nickel, trichloroethylene, and vinyl chloride," the study concluded.

Mercury has been shown to cause immune disorders, oxidative stress, mitochondrial dysfunction, neuro-inflammation and other physical problems. These symptoms can also be found in at least some children with autism. And research on the brains of people with autism show markers that are associated with heavy metal exposure.

I personally believe that toxins like mercury can trigger ASD in children. These toxic exposures are on the rise, and so is the incidence of ASD.

An estimated 1-in-60 13-year-old boys has an ASD, but I don't believe the same is true for 43-year-old men. It is time to stop pretending that the autism crisis is not happening.
--------------------

PLEASE NOTE - I was interviewed this week by Sharyl Attkisson of CBS News for the "Washington Unplugged" webcast, which may be viewed here.

Robyn O'Brien: Are We Playing Russian Roulette With Our Children?

2009-10-07T17:34:52Z

Today's headlines are enough to make any mother quake.

According to the Centers for Disease Control, autism rates have doubled. Research published this morning in the journal Pediatrics reveals that in the U.S. in 2007 about 1 in 91 children ages 3 to 17 were somewhere on the autism spectrum. That's more than any previous survey has found.

The new study then goes on to cite earlier research showing that the life-time medical cost of dealing with ASD is $1.6 million; other research cited says ASD-related costs borne by the health-care system rose 142 percent from 2000 to 2004.

While industry funded 'experts' may suggest that this study is based on subjective data, industry funded 'experts' also suggest that a bowl of Cocoa Krispies is a SMART CHOICE for our children.

According to the Centers for Disease Control, there has been a 265% increase in the rate of hospitalizations related to food allergic reactions, 1 in 2 minority children and 1 in 3 Caucasian children born in the year 2000 (this year's fourth graders) are expected to be insulin dependent by the time they reach adulthood and now 1 in 91 children has some degree of autism.

Today, health care spending represents 17% of our GDP, but perhaps it is time that we view our children as more than just a sales channel for Big Pharma's money making medicine.

The unhealthy truth is that today 1 in 3 American children now has autism, allergies, ADHD or asthma.

In 1946, Harry Truman said, "A nation is only as healthy as its children."

Shouldn't we stop playing Russian Roulette with ours?

Autism Rates: Government Studies Find 1 in 100 Children Has Autism Disorders

2009-10-05T01:03:28Z

CHICAGO — Two new government studies indicate about 1 in 100 children have autism disorders – higher than a previous U.S. estimate of 1 in 150.

Greater awareness, broader definitions and spotting autism in younger children may explain some of the increase, federal health officials said.

David Kirby: Kathleen Sebelius: Autism Now Hits 1 In 100 Children, We Have No Idea Why

2009-10-04T18:05:21Z

Washington loves to dump its bad news on a Friday afternoon, and on October 2 it confirmed that 1 percent of American children (and by extension, perhaps 1-in-58 boys) has an autism spectrum disorder.

On a hastily arranged telephone "visit" with US Health and Human Services Secretary Kathleen Sebelius and the autism community, the health chief announced that "the prevalence of autism might be even higher than previously thought." But, she added, "We don't know if it has gone up, and we are hoping to unlock these mysteries."

The Secretary then declared autism "An urgent public health challenge," proclaimed that President Obama was "right to make it one of our top health priorities," including research into "treatments and a cure" for the disorder, and then promptly ended her visit.

Helping to fill in some of the details was Dr. Thomas R. Insel, Director of the National Institute of Mental Health (NIMH), and Chair of the Interagency Autism Coordinating Committee, who confirmed that CDC data to be published later this year will estimate the current childhood ASD rate at 100-per-10,000 children.

The data, collected from the Center for Disease Control and Prevention's Autism and Developmental Disabilities Monitoring (ADDM) Network, shows a significant uptick in ASD prevalence estimates in just two years.

According to ADDM, the average rate of autism among eight-year-olds across all study sites was 67-per-10,000 in 2000 (the 1992 birth cohort), and 66-per-10,000 in 2002 (the 1994 birth cohort). Only six sites were included in both studies, and their average prevalence rate increased by 10%, from 67-per-10,000 to 74-per-10,000.

Now, CDC has announced that among the 1996 birth cohort, the estimated rate of ASD is 100-per-10,000 -- a staggering 50% increase over the 1994 birth cohort.

It is easy to understand why the Feds would call autism an "urgent" issue, but any sense of urgency by the officials on the phone was clearly absent, at least from my perspective. In fact, much of the discussion was centered around providing services and education to the growing ranks of Americans with ASD, an entirely laudable goal, to be sure.

But no one expressed any alarm that up to 1-in-58 boys in this country is now on the autism spectrum. The officials on the call seemed to think that wider diagnostic criteria - such as adding Asperger Syndrome and Pervasive Developmental Disorder-Not Otherwise Specified (PDD-NOS) -- to the concept of an "autism spectrum disorder" vastly inflated the rate of ASD in the United States.

There was no alarm, and little time for questions from the community that was invited to "visit." After about 15 minutes, questioning was cut off, and the call abruptly ended. I tried three times to ask a question (via a telephone switching system) and so did many other people on the call, which lasted a total of 39 minutes.

And so, here is my (expanded) question, directed to Dr. Insel:

Dr. Insel, thank you for arranging this call. I understand that the estimated average ASD rate increased from 66-per-10,000 to 100-per-10,000 between the 1994 and 1996 birth cohorts. Officials on this call believe this increase could be attributed purely to expanding diagnostic criteria and greater awareness, though they don't know for sure.

But how could you attribute a 50% increase in just two years to wider diagnostics, especially when the 1994 cohort would have been diagnosed, on average, in 1999 and the latter cohort in 2001? The expansion of the ASD definition to include Asperger and PDD-NOS occurred in the early 1990s, so how can you explain this sudden and delayed explosion in the numbers?

Also, you have declared that the vaccine-autism link has been disproven, yet all the studies you cite have only looked at MMR and thimerosal. But why is the IACC, which you chair, not investigating the possible role of Hep-B vaccine, given the following facts?:

1) An abstract just published in the Annals of Epidemiology said that giving Hepatitis B vaccine to newborn baby boys more than triples the risk of ASD.

2) A study just published in Neurotoxicology reported that infant male primates who received one dose of the Hepatitis-B were far more likely to display developmental delays than unvaccinated controls.

3) A study last year in Toxicological and Environmental Chemistry showed that boys getting the 3-shot HepB vaccine series were eight times more likely to require early intervention services than boys who did not have the series.

4) A study in the journal Neurology found that children who received Merck's Engerix B brand Hepatitis B vaccine series were 74% more likely to develop "central nervous system inflammatory demyelination" than children who did not receive the vaccine.

Finally, why did you jettison the vaccinated-vs.-unvaccinated study that your own committee had previously voted to recommend, and why are you spending only 39 minutes speaking with the community that represents, according to your boss, one of the nation's "top health priorities?"

I am also sending this question to HHS, to see if I can get a proper response. But I am not holding my breath.

Shelley Hendrix Reynolds: Communication Interruptus

2009-10-02T16:39:11Z

For the last decade, my heavy heart watched other children move on through their lives hitting their milestones on time while my son Liam struggled behind, knowing he wanted so badly to be in the mix but not quite finding his way. During the first 17 months of his life, he hit those milestones perfectly on time -- smiled, cooed, rolled over, sat up, crawled, pulled up, walked and said "Mamma," "Daddy" and developed a vocabulary of at least 73 other words we recorded. He was on his way.

Then autism hit.

His words and communication skills evaporated, replaced by screaming fits of frustration. He could no longer engage in basic communication skills like pointing to something he wanted. He just screamed until we either figured it out or fell into an exhausted heap on the floor.

Everyone else's world just kept on turning as ours experienced a head-on collision.

In 1998, when he was initially diagnosed, I didn't have internet access. I didn't have a cell phone. I only had an attached car phone with a giant inflexible antenna. Mairin wasn't talking yet. Our lives were spinning out of control. Our whole family had communication interruptus.

One month after Liam was diagnosed, AOL put a disk in our mailbox as they had for over a year. This time, desperate for more information, I decided not to throw it in the trash. I inserted the disk, took apart our phone and plugged the cord into the computer. That weird little squawky noise started as the dial-up modem engaged and POOF! I found a whole new world of people to teach me how to reach him; people who exchanged their sleep time to swap information until the wee hours of the night.

Three months later, Liam said "Up. Up. Up." We have been moving in that direction at his command ever since.

With the right therapy and treatment, Liam slowly began to talk again. One word here. One word there. Technology swirled around us and continued to evolve despite the communication breakdown in our home. In 2000, we got rid of the ridiculous car phone, replacing it with a cell phone the size of a small shoe box with a fancy flip-down mouthpiece.

Liam hooked three words together in a sentence that year.

In 2005, after Katrina hit, I very quickly learned how to jump on the texting bandwagon on my gaudy, girly pink cell phone. With all of the damaged cell phone towers, the signals were overloaded. It would easily take two hours of straight dialing just to get a full signal and chances of keeping it open were pretty slim. So I learned to jam each of those little buttons two or three times just to eek out the word "HELP!" After six weeks, I could text 50 words a minute in my newfound Morse code.

That same year, seven years post-diagnosis, Liam still couldn't say a seven-word sentence without significant prompting and encouragement.

In the last four years, the world's communications methods have exploded with the advent of YouTube, MySpace, Facebook, NING, Twitter, blogging and tiny cell phones to allow you to update and upload on the go. I can research anything on my Blackberry through BING or Google, check-in for my next flight, shoot pictures, capture video and zap one ringtone from my phone to yours. Cell phones have morphed into mini computers that allow me to email, review documents, slide presentations, Excel spreadsheets and record video -- increasing my communication while reducing the world to my fingertips.

Liam is still clawing his way up the Mount Everest of Communication before him determined to get to the peak. Trying to hit each milestone. Step by step.

This summer he asked for a cell phone because his little sister has one. I wondered if he could be responsible and keep up with it. He can! He uses it to call me when he is at his daddy's house to tell me about his day at school or ask me, "Which one of the United States are you in today?"

He quickly learned how to text -- an unbelievably important communication skill in this day and time. A teenage milestone that he has met -- in part.

He uses this new way to manage his life sparingly but most of his texts are clearly thought out. The first text was "Can you text me my girlfriend's number?" I still have that one locked in my phone. "Did you get the printer fixed yet? I have a project on Thursday." Or "I forgot to ask you to get waffles at the store for my breakfast Mom."

We still have a long way to go though. The other day a friend of mine got a text from him that said, "Two heffalumps covered in honey." The end. No explanation for why he sent it. We'll have to keep working on that.

Finally, yesterday, he asked me for a Facebook account and his very own email address.

I was scared for him to enter the world of the Internet with accessibility but he is nearly 14. Surprising me again, he hit a communication milestone right on time. Why NOT take full advantage of that?

We brainstormed on a cool e-mail address name for him. One that did not include Disney characters' names. One he can grow with over the next several years as he matures. We discussed how important it is to remember your passcode and to make it just tricky enough that you can remember it without someone else figuring it out. We talked about Internet Stranger Danger -- something about which we need to have about 80 Million more conversations.

He selected a picture for his profile that he liked. We set all the privacy settings to their strictest settings.

Then I let him fly. And fly he did.

He scrolled through my friends to figure out who he should send friend requests to. The first request he made was to a friend of his who is 13....along with an e-mail message which he typed out completely independently.

The subject line was "13 Year-Old Buddies" and it went just like this:

Dear O:

Bambi was the cutest and the winner deer. Did you like Bambi because he's cute?

Your Friend, Liam

P.S. It's from Walt Disney

I will continue to help him polish conversations in person, text and e-mail so that it is on level with his peers -- clearly -- but he is without a doubt headed in the right direction.

As I started to explain what a Facebook status is, I was stirring crawfish etouffee on the stove making dinner. He was complaining vociferously about it. He hates spicy food. Once he realized his Facebook status was a way to express what was on his mind, he smiled an impish grin. Then he wrote, "I can't believe my Mom eats crawfish. I hate spicy food because it's bad for my tongue."

After dinner, he decided the etouffee wasn't so bad. He jumped back on, independently found my page and typed, "Crawfish tails on rice for dinner is amazing. Only Boiled Crawfish is spicy. We want dessert at Target. Let's go!" which was promptly rewarded with a trip to Target to find something sweet.

This morning, he checked his account to see if anyone responded overnight. He smiled his cute smile, then shouted, "I have seven friends!" Seven loving, wonderful friends who will watch out for him and gently interact with him to teach him this communication tool.

Mount Everest's Communication peak still seems a million miles away sometimes but we are slowly closing the gap. Every day he keeps pulling out that pick axe of his and chipping away on his journey determined to make it up the mountain before him. His climbing party has tethered themselves to him to keep him from falling if he should slip.

The best part is that he is now high enough that he can look back down and see how far he has come.

And for once, he can relax a little, have some fun, talk to those friends and enjoy the view.