A third softball pitcher at Corinth High School in Upstate New York was stricken last week with the same strange illness -- including seizures and tics -- that felled two other pitchers at the school.
Like the first two, Corinth 9th grader Abby Matuszak collapsed unconscious. And like them, she's being told by medical experts that it's all in her head. That's the same diagnosis officials gave earlier this year to about 20 girls, many of them athletes, at LeRoy Junior-Senior High School in the western part of the state.
But the new case in Corinth strengthens the possibility that something environmental or infectious -- or a combination of both -- may be at work. While two softball pitchers (out of four) at the same school might be dismissed as a coincidence, albeit an unlikely one, three is an alarm bell. And several local sources told us the total number of students affected over the past two school years in Corinth is now six, including a sixth-grader active in cheerleading.
Abby's mother, Shannon Matuszak, says that after her daughter was taken by ambulance to a hospital last week, doctors dismissed her symptoms as psychological. She is now at home, missing classes she enjoys, games with her varsity field hockey team, Spirit Week activities and Homecoming -- all much-anticipated events for a ninth grader. She is currently suffering "only" three to four seizures a day, according to her mother, a psychiatric nurse.
“I told them, don’t you think it’s odd that six girls in the same school in a tiny small town are all going through the same thing and they walk through these doors and you tell them the exact same thing?" Shannon said. "Do you think that maybe they correlate with each other -- that three were pitchers? Maybe it’s nothing, but to me it’s a Big Maybe.”
The family found a doctor in Westchester County who has started Abby on antibiotics with a presumptive diagnosis of Lyme disease. They're hopeful her symptoms will continue clearing up and she'll be back in school soon.
Corinth Central School District Superintendent Daniel R. Starr did not respond to a request for comment.
Abby’s saga began last Wednesday, just two days after we reported on the cases of Alycia Nicholson and Lori Brownell, who began suffering similar symptoms last year when they were the junior varsity and varsity pitchers. Abby is the pitcher for the ninth-grade team playing on the same fields, and her mother said no one in her family was aware of our article.
Like Lori and Alycia, Abby experienced some symptoms in the weeks before the severe attack. Her legs cramped and her joints hurt. Her mother told her to eat bananas to replenish potassium depleted by exertion. Last Tuesday, Abby got a nasal flu vaccine.
On Wednesday, “What happened was she was in lunch, and she started having her peripheral vision going,” her mother said. “And she had a headache, and her hearing was off.” Her friends wanted her to go to the nurse, but, typically, she insisted on attending her next class, in math.
“Her friends in the class said she was staring off and very spacey, and then all of a sudden her desk was shaking from where she was writing, and then she just toppled over, she fell right out of her seat.”
During a 45-minute wait for an ambulance, she had eight more seizures, and continued to have them at the hospital in Glens Falls and after being transferred to Albany Medical Center. They ranged from 10 seconds to three minutes in length. “It took them a long time to rouse her when she got to the hospital. It took half an hour to wake her up. It wasn’t until probably an hour later that she was able to even speak.”
While some canaries fall silent, such as those injured by vaccines and diagnosed with autism, the warnings of other canaries can be heard loud and clear – their vocal tics and anguished stories resonating over the airwaves and in cyberspace. In recent weeks, America has been riveted by developments at Le Roy Jr./Sr. High School in upstate New York where twelve girls ages 13 to 19 began experiencing tourettes-like symptoms – the cause of which is intensely debated by medical experts.
The total number of official cases in Le Roy is now reported at 19, with 17 of them being Le Roy High School students. Two girls at Corinth High School near Albany are also affected. Symptoms began in May for the first two cases (Le Roy and Corinth). The disorder has been so debilitating for some students that they’ve given up cheerleading, athletics and even attending school. Some are now reported to have improved while others’ symptoms have worsened. Indoor air tests were initially conducted with all results coming back negative. No soil tests were commissioned.
The teens’ plight hit the national news when several families went public with their stories, followed by the Le Roy school district informing the community that the school was deemed safe by federal agencies and state medical professionals. The New York State Health Department ruled out environmental and infectious causes. But the reassurances rang hollow as information trickled in about the school’s siting on a FEMA-designated flood hazard area, rust-colored fungus on a playing field, leaking gas wells on school property, flooding problems, possible contamination from a nearby Superfund site as well as proximity to CAFOs, pesticide spraying of crops and other health hazards both natural and man-made. Read more and learn about The Canary Party HERE.
As the white-hot glare of attention begins to pull away from the outbreak of tics among students at LeRoy Junior/Senior High School in Western New York, most medical and media sources appear to have settled on “conversion disorder” as their default diagnosis.
Newsweek acknowledged the families’ belief that something physical must be wrong, but the author insisted on “a very inconvenient truth: the cluster in Le Roy is, by all reasonable judgment, a mass hallucination. Aided by media of all sorts, what the girls are suffering from is perhaps the ultimate disease of our era.”
The New York Times, without bothering to name LeRoy, published an article titled “Hysteria and the Teenage Girl”: “Female adolescence is — universally — an emotionally and psychologically intense period. It is during this time that girls become aware of the emergence of womanhood, with both the great joy and promise that come with it, and also the threat of danger.” As evidence, the writer noted that a LeRoy cheerleader – not a linebacker – was one of the first stricken.
“Well, that’s the kind of nutty story that only happens once, or so I briefly thought,” wrote Caitlin Flanagan, “until more focused Googling quickly led me to an almost identical episode, this one in 2002, in a high school in rural North Carolina. Once again, a cheerleader was first to manifest the strange symptoms, and once again other girls, some of them cheerleaders, were struck with the same condition.”
Though the writer is a woman, the supposed susceptibility of peppy, excitable female cheerleaders versus stolid, masculine football players is Freudian paternalism dressed up for a new century – a misogynist’s dream. (It was our skepticism of conversion disorder that drew us to this story, having addressed it in a chapter titled “The Age of Hysteria” in our book; we will have more to say about its shaky foundations in upcoming articles.)
Responding to community pressure, the LeRoy school district has grudgingly commissioned a new round of environmental tests while asserting “the school is safe,” a balancing act that left many in the community dissatisfied. (The school board this week approved the new tests, expected to cost as much as $75,000. Some parents and environmental groups are pushing for broader tests than are so far planned. ) Local TV stations have stopped airing videos that show the girls’ tics, concerned that might spawn more “psychogenic” cases. The neurologist in Buffalo who originally diagnosed conversion disorder has become more emphatic about the diagnosis, even as four more cases arose in the past week in and around LeRoy. He hints darkly that some of the girls have had such awful experiences that, if only we knew, we would understand – pinning responsibility on the families as well as the victims’ own psyches.
The National Institutes of Health offered to evaluate the students (about 15 total at the school, possibly including one boy) for PANDAS – an autoimmune neurological reaction to strep infection. But it is downplaying the idea in advance. The lead NIH researcher who coined the term told a local news site that simultaneous outbreaks among adolescent girls would be unprecedented and unlikely.
That appears to leave only the girls, their parents and a small corps of advocates – Erin Brokovich’s group, environmental and school safety activists, a doctor who found evidence of strep infection in most of the girls – to push for continued attention to physical causes.
Based on our own reporting and analysis, they are correct to do so. Real illness remains the likeliest explanation with the suggestion that these dramatic symptoms are provoked by stress a convenient excuse for avoiding a rigorous investigation of environmental risk factors . Here are six possible risks that need to be raised, followed by a key question that needs to be answered:
Mycotoxins on playing fields?
In any inquiry into a novel medical condition, identifying significant changes in the environment is a priority. In LeRoy, as we’ve reported, several new factors converged in May 2011, when the first girl was affected there, according to a report from the New York State health department.
That month, a statewide ban against pesticides – insecticides, herbicides, fungicides -- took effect for every school in the state. The ban coincided with the rainiest spring ever in Buffalo and the second rainiest in Rochester – LeRoy is located between them -- followed by more downpours in late summer. One of the warmest winters on record has followed.
The school district confirmed last week that it “has not applied pesticides to any of the high school athletic fields since September 2010.”
That month, a product called Turf Herbicide was “used to spray broadleaf weeds on varsity football and soccer field.” In summer 2009, Roundup Weed killer was used in mulch beds, but not in 2010. (The law banning pesticides was passed in April 2010 and may have affected spraying that summer.)
This probably explains the orange substance that cropped up on playing fields at the school last year – so thick that it coated students’ shoes and clothes, so widespread some thought it was pesticide sprayed from an airplane. Officials said it was a harmless grass fungus called rust. Ironically, these fungal outbeaks may point to a counterintuitive new development: the complete and sudden absence of pesticides on school grounds.
Based on that and a history of flooding and water problems at the school, which is partly sited on a FEMA flood hazard area and wetlands, we speculated that harmful metabolites of a fungus – otherwise known as a mycotoxin -- might also have gained a foothold. One possibility: ergot alkaloids, toxic products of fungi that can grow on rye and other grasses. We told the story of a man in the village of Bath, about 70 miles from LeRoy, who developed similar symptoms last September. He lives next to a field that was planted last summer in ryegrass and not harvested, adjacent to a swamp and a levee. He draws his water from a well in the back yard.
In December, the school district tested several places inside the school for mold spores and found none, although they did not do “destructive” tests – cutting open walls and the like – to look for hidden sources. Many experts say that it is the only way to completely rule out mold. They also did one test of the air outside the building – location not given – as a “control” to see if inside readings were higher.
One negative test was for a fungus called a. fumigatus, which can produce ergot alkaloids. A June 2005 study in the journal Applied and Environmental Microbiology found, according to its title, “Abundant Respirable Ergot Alkaloids From the Common Airborne Fungus Aspergillus Fumigatus.”
“Ergot alkaloids are mycotoxins that interact with several monoamine receptors, negatively affecting cardiovascular, nervous, reproductive, and immune systems of exposed humans and animals,” the report said. The alkaloids develop in especially high quantities on maize (corn) and latex paint, according to the study. In a comparison chart, ergot alkaloid production was far higher in latex paint than in any other medium.
That is intriguing because one substance the LeRoy school sprays annually on its grounds is white latex paint, to create the lines that mark playing fields. In the buildings and grounds report, the district said it has used Super Stripe Athletic Paint and Field Marking Paint, two latex brands, every year including 2011.
That might offer an alternative explanation for the Cheerleader Syndrome others have noted. Simply put, cheerleaders spend their time on the sidelines. (And they wear fewer clothes than running backs.) At LeRoy, four of the first 12 girls affected were cheerleaders and two were soccer players, according to the state health department report. In the 2002 North Carolina cluster cited in the Times article, five of the 10 students were current or former cheerleaders.
By now the outbreak of tics and Tourette’s like symptoms among primarily female high school students in LeRoy, New York, has hit the mainstream media—all except The New York Times, which so far has printed nothing on the tragedy. Why?
It’s possible that Times management may have foreseen that, after more low-brow media had exhausted the standard diversionary red herring theory for mass outbreaks of movement disorders among females— that the girls suffered from the too-Freudian “conversion disorder” or “mass hysteria”— environmentalists would eventually descend on LeRoy to test the soil, air and water and study potential toxic sources.
The problem for the Times may be that there's no progressive-seeming way to spin the story—mod shade of lipstick or not, the hysteria theory is still a pig. Though it’s a very useful pig with so many industry-exculpating applications which the Times is deeply invested in. For instance, what if environmental theory in the LeRoy outbreak implicates industries or institutions represented by the Times’ shared board members?
Maybe in an oblique, all-purpose pitch to de-pig-ify the hysteria theory, Times editors could dredge up a representative from an astroturf breed of Prozac-friendly postfeminist like Elizabeth Wilson, author of Psychosomatic: Feminism and the Neurological Body, in which she argues incomprehensibly that:
Listening to Prozac does not simplistically replace psychological or cultural determinism with biological determinism; more carefully, it opens up the very nature of determination (i.e., certainty, termination, resolution) to interrogation.
But there’s another option beyond bad genes and bad childhoods: Biological indeterminism—as in consumers have little informed consent about the safety of the air we breathe, the food and water we consume and the drugs we take. We are not always in control of how toxins impact us in combination, how they got into us in the first place or our individual toxic susceptibility.
The environmentalists have in fact descended on Leroy::
The competing psychological-disorder diagnosis — Buffalo Drs. Laszlo Mechtler and Jennifer McVige have called it both conversion disorder and mass psychogenic illness — is what's known as a diagnosis of exclusion, meaning it is applied when other more tangible explanations have been ruled out.
Miller and representatives of the environmental and health groups say not enough work has been done to exclude these other possibilities.
"Right now you have a cluster of sick kids, and nobody's quite sure what's going on. It's kind of been a rush to judgment here," said Claire Barnett, executive director of the Healthy Schools Network, a nonprofit group with offices in Washington, D.C., and Albany.
Officials at the state Department of Health, which has looked into the cluster, avoid speculating about the cause. Spokesman Jeffrey Hammond notes there are "many causes of tics-like symptoms," and stress often makes them worse.
But Hammond did say most of the girls did not get the HPV vaccine Gardasil, so any side effects wouldn't have caused the symptoms. He said the physicians in Buffalo also ruled out infections in the patients they saw.
Hammond noted that indoor air testing done for the school district found no evidence of toxic-chemical contamination, a lack of fresh air, mold or other problems. And he argued the lack of symptoms reported by staff members and male students argued against a contaminant spread through the air.
In the end the claim that solely female students were stricken has been contradicted. Aside from vague reports that, among the 15 or so victims in LeRoy, one male student may have been affected, Age of Autism blog editors Dan Olmsted and Mark Blaxill were contacted by the family of Bryan Trembley, a thirty-five year old resident of Bath, New York, who developed very similar symptoms to the girls in LeRoy in September. Bath—aptly named considering that, like LeRoy, the area is low-lying and subject to flooding as the Age of Autism editors documented— is approximately 60 miles southeast of LeRoy, though the towns appear to be connected by an intricate network of waterways.
Bryan Trembley is obviously not an adolescent or female and so far, no one has suggested he suffers from conversion disorder. In a similar past outbreaks, such as at the William Byrd High School in Roanoke, Virginia in 2007, one adult teacher succumbed to tics along with students. Still, the gender disparity and adolescent bent of the syndrome is obvious, which is likely what brought on quaint speculations of victims’ female-borne psychological instability. Who could be more “susceptible” to this kind of sloppy inference than teenage girls?
LEROY, N.Y., February 6 -- Last year, during the wettest spring ever recorded across large swaths of New York state, a little-noticed law took effect: As of May 18, pesticide use was banned from the grounds of every school in the state. That same month, a girl at the junior/senior high school here, and another at a high school near Albany, developed a mysterious tic disorder. The total number of cases in LeRoy has now risen to 15.
This convergence adds a new possibility to the list of suspects already being scrutinized in this picturesque Western New York village of 4,400, suspects that range from a 1970 train derailment that spewed toxic chemicals, to an autoimmune disorder called PANDAS, to leaks from gas wells on school grounds that may or may not have employed “fracking." The new possibility: Poisoning from a fungus that grows on a grass commonly planted on school grounds.
The fungus is called ergot, and it can grow when ryegrass – used on most athletic playing fields – sprouts a floweret that gets infected. That most often happens during wet spring months and on low-lying or marshy areas. (This photo was taken on school grounds last week.)
Two other tic cases have been reported in girls who attend Corinth High School, north of Albany. Both are members of the school softball team; the first girl collapsed unconscious in May during the first inning of a softball game and began twitching and convulsing, according to the Albany Times-Union; in LeRoy, at least 6 of the first 12 cases were among athletically active girls – four cheerleaders and two members of the soccer team.
And as we have reported, a 35-year-old man in the village of Bath, about 70 miles from LeRoy, was stricken with the same symptoms in September. He lives close to a field that was planted last spring in rye and not harvested; there is a swamp and a levee nearby; and his water comes from a well in his yard. (This is a photo of the swamp.)
In Corinth, the first girl was affected in May; according to a report from the New York State Department of Health released Friday, the first case in LeRoy was also in May, followed by three more cases in weeks that began in September, two cases in October, one case in November, and one case in December. The state report dismissed environmental or infectious factors and embraced the official diagnosis of “conversion disorder,” in which stress or trauma are subconsciously converted into physical symptoms (several cases at once is called “a mass psychogenic event”).
By Teresa Conrick
I have been following all of the news and reports on the teens and now two adults who have developed sudden onset tics and Tourette-like symptoms in upper NY. It is an unanswered medical phenomenon still and one that is devastating. One thing that seems certain -- the issue of Conversion Disorder vs Immune Disorder needs a further analysis. A report titled, "Investigation of Neurologic Symptoms among Le Roy Jr/Sr High School Students, October 2011 – January 2012" has been made available for viewing and some interesting pieces of information seem worthy of our attention:
All cases were female. Three of the 12 cases were identified as having pre-existing medical conditions associated with tic disorders. Two of the three cases, who were tic free for a period of time, experienced an exacerbation of tic symptoms during this time period. The third case was identified as having a previous diagnosis of Tourette’s disorder and did not have a new onset of tic symptoms, but rather an acceleration of on-going tics during this time period. Onsets of tic symptoms ranged from May 2011 to December 2011 for the nine new onsets.
My good and learned friends here at Age of Autism, Mark Blaxill and Dan Olmsted, have been writing about LeRoy and some of the intriguing (AofA Tics and Toxins A History of Building Woes) and significant environmental factors that may be at play. (AofA Tics and Toxins Playing Fields on FEMA Flood Hazard) Kevin Barry, an avid Age of Autism reader and researcher, also included some historical, pertinent pieces as to what could be making some of the teens so ill. Having my own daughter with similar issues of sudden onset motor and vocal tics, seizures and a history of repeated Strep infections, parasites, and lengthy viral illnesses has made the search for the source of this mystery all the more important to me.
BATH, N.Y., February 3 – “I’ve always been a fighter,” Bryan Tremblay says, and that’s not just a metaphor. Now 35 but still a slight 112 pounds at 5 foot 1, he was a bully magnet as a child and learned early to defend himself. That was an advantage when he wrestled for his high school team.
But now Tremblay, who lives in the Steuben County village of Bath in the Finger Lakes region, is battling a demon he can’t control. Since September, he’s suffered from a major tic disorder. It goes on, unpredictably, for hours a day. Even on three heavy-duty medicines, he has seizure-like episodes that leave him sitting dazed for half an hour.
The disorder keeps him at home. It makes it hard to study for his online degree in graphic design from the Art Institute of Pittsburgh – and well-nigh impossible to look for work after being laid off early last year from his job at a furniture factory. It creates inevitable fears for his health, his wife, his future.
“It’s so frustrating,” he says. “I just want an answer to what I’ve got.”
Whatever Bryan Tremblay’s got is remarkably similar to the tic-like illnesses that have afflicted 15 students at LeRoy Junior/Senior High School about 70 miles away. Many of the LeRoy students, all but one a girl, came down with the disorder about the same time Tremblay did (he didn’t hear about that until much later). Most were diagnosed with “conversion disorder,” and since so many cases were involved, medical experts have declared it a “mass psychogenic event,” in which stress or trauma is supposedly converted unconsciously into physical symptoms and spreads among affinity groups. School and state health officials say they’ve ruled out environmental or infectious causes and insisted again on Wednesday that the school the girls attend “is safe.”
No one is suggesting conversion disorder in Tremblay’s illness. No one he knows has anything like it. Extensive neurological workups have turned up nothing. He’s due for another follow-up in a couple of weeks at the University of Rochester Medical Center. Tremblay doesn’t drink or use prescription or recreational drugs, nor has he been to LeRoy.
He is no publicity seeker. His sister mentioned his situation in a comment on a story we wrote about LeRoy. She gave us his contact information when we asked, and we reached out to Tremblay.
In an e-mail, he responded: “The symptoms seemed to appear almost out of thin air. It started with uncontrollable body spasms and convulsions in my mid to upper body area. These convulsions lasted from approximately 15 minutes to a 30 minute span.
“Soon the spasms started moving to my head and neck area and the movement was similar to a strong neck-whip similar to that of whiplash, sharp and strong and completely random. I did seem to notice that the amount of stress was a factor in the strength of the tics. The problem is the stress level increases once it starts and the tics become stronger and increase as well.
“I noticed that after five months the tics have become vocal, more yelling and humming with points of time where I repeat noises over and over. I find myself spacing out for large amounts of time and daydreaming with difficulty recovering.
“I have also started hand and arm movements.”
In almost every way, Tremblay’s life circumstances could not be more different from the LeRoy cases. But one common factor was evident during a visit – water. Water everywhere. Tremblay lives in a low-lying area. His house backs up to a levee less than a football field’s length behind his house.
LEROY, N.Y., February 2 – School officials who say environmental factors can’t be responsible for the outbreak of tics at the Junior/Senior High School might want to check last year’s record rainfalls – and the flood-prone ground right under their feet.
The tics broke out after an unusual pattern of heavy rain, followed by a mild winter that has kept the ground from freezing and left lots of standing water at Leroy Junior/Senior High School.
That should be no surprise. Part of the school grounds -- including athletic fields -- are right on top of a federally designated FEMA Flood Hazard Area. While a county official told us that the school itself sits on a slope just above the hazard area, the zone cuts right across the girls’ softball diamond, as well as the football/track field and another, larger baseball field.
In fact, we’ve been told by local residents that some fields, including the girls’ softball field just built in 2009, had to be dug up and rebuilt within the last year because the ground was so wet. The building itself has not escaped water and structural woes – the gym could not be used when the school was first opened a few years back because the floor buckled and sank, and the opening of school was delayed one year for a week by flooding, according to a former student.
School officials won’t comment, but Superintendent Kim M. Cox issued a new statement Wednesday, mostly blasting national press attention and the involvement of famed advocate Erin Brockovich, who has cited a train derailment of hazardous material a few miles from town in 1970 as a likely cause. Cox said new tests have shown drinking water inside the school – which comes from neighboring Monroe County – is safe.
Citing state and federal experts, she said: “All of these agencies and professionals from these agencies have assured us that our school is safe. There is no evidence of an environmental or infectious cause. Environmental causes would not discriminate. We would see a wide range of people affected.”
But no one seems to be looking up at the sky or down at the ground. LeRoy, like other New York state and Northeastern U.S. locations, has seen an epic amount of rain during the past 12 months. We put this chart together to show 2011 rainfall versus normal amounts in Buffalo and Rochester. LeRoy is located between them.
The heavy rains and flooding in August and September 2011 may have lead to a release of dichloroacetylene (DCA) in LeRoy, NY. DCA is a neurotoxic decomposition product of trichloroethylene (TCE) which spilled in the area 40 years ago due to a train derailment. DCA has been shown to cause tremors and cranial nerve palsies – or the more vernacular name - tics. More investigation of this possible connection is warranted.
Mass hysteria? Conversion disorder? Really? Have you learned nothing since the Salem Witch Trials? Those explanations are no more ridiculous than trying to blame refrigerator mothers or old sperm for the autism epidemic. Wasting time on ridiculous explanations is tragic because it does not help those currently injured and it does not prevent new injuries. LeRoy psychiatrists? Please admit that you do not know what happened to these girls and move along.
I listened to the families and the girls who were experiencing the symptoms, which lead me to question, why LeRoy, NY? Why now?
After reading about the 1970 TCE spill, which is unique to the LeRoy community, I began searching to see if TCE could have a role in the neurological issues. Additionally, could the massive flooding that the LeRoy area experienced in the aftermath of both Hurricane Irene and Tropical Storm Lee help explain why this is happening now, and not previously in the last 40 years?
The town officials and school district should be transparent with their environmental test results and provide those results to the public as soon as possible. The town officials and school district should also allow for private testing to search for TCE/DCA exposure to corroborate their results. I believe there is sufficient rationale for additional testing to determine specifically if TCE/DCA plays a role in the physical issues these children are experiencing.
While the potential connection between TCE/DCA and the girls with neurological symptoms is speculative and needs to be confirmed by testing, the potential connection warrants specific investigation. An article from 1984 in the journal Archives of Toxicology suggests all that is required to form DCA vapor is TCE plus “moist concrete.” As a result, in addition to the school property, many locations in LeRoy should be tested for TCE/DCA contamination.
A 1944 paper describes how DCA may have caused “Cranial Nerve Palsies” in 13 patients (10 women) when TCE was used as an anesthetic. The 1944 paper makes a very important general point about toxicology:
By Dan Olmsted
LEROY, N.Y., January 30 -- New playing fields, including one for girls' softball, were completed the year before the outbreak of tics and other ailments began afflicting girls at Leroy Junior/Senior High School.
The 2010 photo shows the completed fields, here:
The smaller field to the immediate left of the school is the girls' softball field, according to a former student at the school. All but one of the students affected so far are girls. There are unconfirmed reports that one boy was also stricken.
School officials said earlier this month that two reports they commissioned of indoor air quality and mold had ruled out any environmental cause. New York Health Department officials concurred and a spokesman told me last week, "The school is safe." Most of the girls were diagnosed at a Buffalo neurological clinic with "conversion disorder," in which psychological stress or trauma is supposedly converted into physical symptoms that clusters of people can display at the same time.
But parents and the girls themselves have rejected that diagnosis, and other theories have been advanced; school officials now say they are ordering another round of tests. I reported last week that the first testing did not include any outside areas of the school grounds, except for reviewing school pesticide logs. Because those logs were in order, environmental factors outside the school building were ruled out. State health officials also say no infectious agent was involved.
But in any investigation of a new illness, the question of what's new in the environment -- from medicines a person is taking, to places they have been, to changes in where and how they live -- needs to be ruled out first.
Building ballfields within the past two years certainly qualifies as new. That could hypothetically create new risks, either from stirring up toxins such as pesticides on the site, or importing materials such as fill or sod that was previously contaminated. New attention has been given to a railroad derailment several miles away in 1970 that spilled both cyanide and TCE, a highly toxic manufacturing agent. Environmental activist Erin Brockovich has suggested that the school site was contaminated by runoff from that incident, or that dirt from that area was used to construct the school in the early 2000s.
Managing Editor's Note: Neurologist Laszlo Mechtler of the (Scratch and) Dent Neurology Clinic where the Leroy NY girls have been diagnosed with Conversion Disorder seems to blame the stress of the post 9/11 world in The Week, a UK publication. And he suggests there will be more of the same. My father grew up in the Depression, my Mom was little girl during WWII - can you imagine a more stressful time? How long was it before Agent Orange was implicated in the sickness of Viet Nam vets? By the way, Dr. Mechtler earned more than $175,000 as a paid speaker for Merck, GlaxoSmithKline and Pfizer in 2009 and 2010 according to Pro Publica Dollars for Docs. We hope the sick teens in Leroy find answers to secure their health soon.
Why have 12 teenage schoolgirls come down with a baffling form of “conversion disorder”, once known to Freudians as “hysteria”? The doctor now treating them warns that the answer could be a portent for an increasingly stressed-out America which has been taught to “live in fear”.
“Ever since 9/11, Americans have been subjected to warnings of orange alert and red alert, and, unlike Israelis for instance, they are not culturally used to it,” says Mechtler. “What has happened to these girls is the result of Americans being made to live in fear. We are going to see more of these outbreaks.”
Read more: http://www.theweek.co.uk/health-science/44544/ny-schoolgirls-hysteria-doctor-blames-constant-terror-alerts#ixzz1kQfsaM20
The school where 12 girls developed tics attributed to "conversion disorder" has a history of water and structural problems, and an outbreak of rashes and sores occurred among students playing sports on land where the school is now sitting, according to a student who went there.
"When we first started we couldn't go to gym class because the floor kept sinking and cracking," said the student, who attended the new LeRoy Junior/Senior High School in 2005, its first year of operation. She was one of several people who described the site as a "swamp."
One year, students had to start a week late because of flooding inside the building, she said.
Before the current school -- which goes from eighth to twelfth grades -- was built, the site was used for student playing fields; the school itself was at another location. The new building sits directly atop those playing fields.
In the 1970s, students using those fields suffered from open sores that would not heal and rashes, said the former student, whose mother also went there and recalled the incident. The soil was tested, the cause was found, the students were treated and recovered. She did not know what the tests had shown.
This student expressed surprise that two consultant reports commissioned by the district, which found no problems with indoor air quality or toxins in the school building, stated: "No history of building water damage or site contamination was found."
She is not alone. On a Facebook site set up to support the students, one commenter wrote: "I read the environmental report and it seems like the testing wasn't very thorough. ... Correct me if I am wrong but wasn't the school partially underwater when it was first built? And how about soil testing. It seems like that would be included in thorough environmental testing? These girls deserve some answers. Praying for all of them and hoping we all get some answers soon."
Last week, I reported that except for checking a log of pesticide spraying, there is no evidence the consultants considered toxins in the schoolyard or on playing fields. Yet the symptoms occurred during mild weather when students would have been outside, and the school grounds are surrounded by intensively farmed land from which chemicals could conceivably have seeped or drifted.
The school is required to keep annual pesticide logs that were reviewed by the consulting firm, and therefore pesticides were ruled out. As best I could determine, that’s as far as it went.
The former student told me that some outside areas are used exclusively by girls, including a softball diamond.
Conversion disorder is a psychogenic diagnosis that means a psychological issue, such as stress or trauma, is converted unconsciously into physical symptoms. Several parents and affected students say they don’t accept that explanation. According to press reports, they have lost confidence in the Buffalo clinic that made the diagnosis and are now seeking other doctors to examine their children; the Buffalo clinic has reportedly now offered to conduct more tests.
One press report says the total number of students affected has reached 16 and includes one boy.
Neither the district nor the consulting firm it hired would talk to me about the issue.
On Friday, Jeffrey Hammond, a spokesman for the state Department of Health, told me, "The school is safe. The environment or an infection is not the cause of the students’ tics. There are many causes of tics-like symptoms. Stress can often worsen tic-like symptoms.
“All of the affected students have been evaluated and some have shown signs of improvement. Vaccines (Gardasil) have been ruled out."
Dan Olmsted is Editor of Age of Autism and co-author, with Mark Blaxill, of "The Age of Autism -- Mercury, Medicine, and a Man-Made Disorder." He has been an editor and reporter at USA Today and United Press International, where his investigation of severe side effects of an antimalaria drug given to U.S. soldiers won Best Wire Service Reporting from the National Mental Health Association.
Health experts say they’ve eliminated every possible environmental and infectious cause for the “tics” afflicting 12 girls at LeRoy Junior/Senior High School in New York state. They’ve scoured the building for mold and carbon monoxide (nothing, they say), considered illnesses that might cause the symptom (none), even checked on vaccinations (not all girls had the same shot).
However thorough that workup may have been, it seems to have stopped at the schoolhouse Exit sign. Except for checking a log of pesticide spraying, there is no evidence they considered toxins in the schoolyard or on playing fields. Yet the symptoms occurred during mild weather when students would have been outside, and the school grounds are surrounded by intensively farmed land from which chemicals could conceivably have seeped or drifted.
The school is required to keep annual pesticide logs that were reviewed by a consulting firm looking into environmental factors, and therefore pesticides were ruled out. As best I can determine, that’s as far as it went.
That may not be far enough, given that parents and some of the students involved don’t accept the psychogenic diagnosis they have been given, and that a number of Web commentators familiar with the school have raised concerns about the grounds and how the relatively new building is sited.
Public health officials remain adamant that the case is closed.
"The LeRoy school is safe,” Jeffrey Hammond, a spokesman for the state Department of Health, replied Friday after I raised the issue in a telephone call. “The environment or an infection is not the cause of the students’ tics. There are many causes of tics-like symptoms. Stress can often worsen tic-like symptoms.
“All of the affected students have been evaluated and some have shown signs of improvement. Vaccines (Gardasil) have been ruled out."
While the department has been careful for privacy reasons to avoid naming the illness, a doctor treating the girls has now gone public, with their permission, by calling it “conversion disorder.” Known less gingerly as mass hysteria, the diagnosis is rooted in 19th century Freudian psychology: Stress or trauma is subconsciously transformed into physical symptoms that can occur in several people at the same time.
In part because the LeRoy diagnosis took months to emerge, and in part because many people – including parents and affected children – find conversion disorder a suspect explanation, multiple theories continue to arise. Those include concerns about the school building and grounds, expressed in online comments:
-- An environmental study “would be the first logical step, knowing that the school was built in a swamp and that a number of classrooms were underwater the first year as well as the gym you would think it would be the first thing the school would address- even if only to disprove it.”
-- “Girls started feeling sick in September, sounds like pesticide spraying At the end of summer before the fall to protect late crops.” (The girls’ symptoms began as early as September 10, according to published accounts.)
-- “Have the doctors considered that the condition may be related to the school's having been built on swampy land? Water in the building continues to be a problem. A second story that should be pursued by the press and others is why this new school was built and why it was built on this particular piece of land.”
A quick look look at Google Earth (click the plus sign to see the school and grounds in detail) shows the setting. The high school’s Web site has an aerial photo that appears to show a large pool of standing water close to the school, with a rivulet coming even closer; it appears to be dry in the Google photo.
Farming, despite its idyllic image in American lore, is a highly chemical-intensive practice, and Western New York is no exception. For that and other reasons, it can be dangerous. In October, a few miles west of LeRoy in Genesee County, two people became ill when a pesticide being applied to a potato field wafted in their direction. The substance was a toxic fumigant being injected into the soil in preparation for planting this year’s crop. Officials said humidity might have helped spread it.
Obviously, that incident had nothing to do with the LeRoy illnesses, but it does give a sense of time and place missing in accounts of the area, as well as suggesting weather is an unpredictable vector.
But in such a scenario, why would only girls be affected? That's unclear, but there are a number of possibilities that environmental triggers could help explain. For instance, in some cases of mass illness in high schools, the victims were male football players and the problems were traced to toxins where they played. Being male was not a susceptibility factor, but it pointed to the exposure nonetheless. (In another case, marching band members suffered the same problem for the same reason.)
It is possible that more has been done to consider toxins outside the school building, but if so nothing has been done to communicate it to the national media.
In fact, opportunities continue to be missed. The two consultant reports and the school district’s official statement make no mention of looking for anything amiss outside the building itself ,except to note the water supply comes from neighboring Monroe County's public system. "No history of building water damage or site contamination was found," it states.
Neither the district nor the consulting firm it hired would talk to me Friday when I told them I was seeking information on whether risks outside the school building had been investigated.
Dan Olmsted is Editor of Age of Autism and co-author, with Mark Blaxill, of “The Age of Autism – Mercury, Medicine, and a Man-made Epidemic,” published by Thomas Dunne Books.
I received the following e-mail a few weeks back from the National Institute of Health concerning my inquiry into XMRV (xenotropic murine leukemia virus related virus) infection and children with autism. Here is the reply:
Dear Mr. Heckenlively:
Thank you for writing to the National Institutes of Health (NIH) concerning the presence of the XMRV retrovirus in children with autism. As the Acting Director, Office of Science Policy, Planning, and Communications, National Institute of Mental Health (NIMH), I have been asked to respond on behalf of Dr. Francis Collins, NIH Director.
NIH is dedicated to addressing the growing public health challenge that autism spectrum disorders (ASD) present. In FY 2010, NIH invested $160 million from its annual appropriation in research on autism and another $58 million in funding provided through the American Recovery and Reinvestment Act. In addition, NIH issued several funding opportunity announcements to encourage research designed to elucidate the etiology, epidemiology, diagnosis, treatment, and optimal means of service delivery related to ASD.
As you may be aware, NIH intramural researchers are examining the XMRV retrovirus in samples from approximately 100 children in an autism subtyping study: Neuroimmunologic Investigations of Autism Spectrum Disorders. You can access further information on the study via the NIH Research Portfolio Online Reporting Tools at http://projectreporter.nih.gov/reporter.cfm. Since final analyses of the study are not complete and have not been published, we do not yet have any results to provide. The researchers will share the results in the future after completion of the data analysis.
Thank you again for your interest in research on autism.
Marina Volkov, Ph.D. Acting Director NIMH Office of Science Policy, Planning, and Communications
I responded on June 2, 2011, asking three questions, based on a series of e-mails provided to me by another autism parent who had made a similar inquiry.
1. What was the testing initially used by the NIH which showed a high rate of XMRV infection in children with autism?
2. What were the subsequent tests used by the CDC which did not show a high rate of XMRV infection in children with autism?
3. Is the NIH following the established protocols for blood storage, preparation of the sample, and tests utilized, as detailed by the initial study group of the Whittemore-Peterson Institute, the Cleveland Clinic, and the National Cancer Institute as detailed in their October 2009 article in the journal Science?
When I receive an answer to these questions I will share them with the readers of Age of Autism.
Kent Heckenlively is Contributing Editor to Age of Autism
I received an interesting series of e-mail exchanges from the mother of a seven-year-old boy with autism and officials from the Centers for Disease Control. The e-mails concerned her request for information from the CDC about testing for the presence of the XMRV retrovirus in children with autism. The mother also suffers from chronic fatigue syndrome/ME.
The e-mail exchange was prompted by the publication of an article by David Kirby in The Huffington Post in December of 2009 in which Dr. Thomas Insel, Director of the National Institute of Mental Health mentioned that his intramural group at the NIH had been looking into the presence of the XMRV retrovirus in children with autism since August of 2009. HERE
The series of e-mail exchanges which took place in November of 2010 are interesting for what is said, and what is not. Dr. Insel provided a note from Dr. Swedo in respone to the inquiry from this mother.
Dr. Mike Iadorola is now ready to run the XMRV assays on samples from our children with autism (approx 100), typical development (60) and developmental delay (30). We did send him a batch of approximately 100 samples last summer (from the three groups), almost immediately after the initial report of the positive results in autism. However, that assay proved to be quite unreliable, yielding positive results in individuals who were known to be negative by more extensive testing.
The mother was confused by the response so sent back the following inquiry.
I am puzzled by the statement "yielding positive results in individuals who were known to be negative by more extensive testing" - as the testing for XMRV in humans is still not standardized, how can one test be considered "more extensive" than another one? What tests were used to give the original positive results? Were the samples taken and handled in the same way for these tests that gave the negative results? How were those initial positive results explained away - contamination? Cross-reactivity?
I would appreciate if you could share with me what assays were used for negative/retest findings and who developed them?
In response Dr. Mike Iadorola sent back a reply noting that the assay used was called luciferas immunoprecepitation systems and suggested she look at the results from a recent publication in the journal Molecular Autism by Satterfield/Cooperative Diagnostics.
A new study from scientists at Emory University, the Cleveland Clinic, Yerkes National Primate Research Center, and Abbott Diagnositics and featuring such medical luminaries as Drs. Eric Klein and Robert Silverman is providing information on the path of XMRV infection in primates, and surprisingly the possible triggers for activation of the retrovirus. The work was recently published in the Journal of Virology.
I have a long-standing interest in XMRV (xenotropic murine leukemia-related virus) as my daughter with autism/seizures and my wife have both tested positive for the retrovirus. (My daughter has also recently tested positive for co-infection by HHV-6, type B.) I have tested negative for XMRV. While most of the recent commentary on XMRV has focused on its possible connection to chronic fatigue syndrome/ME, children with autism share many common clinical symptoms with the CFS/ME population, including immune disregulation, increased oxidative stress, expression of proinflammatory cytokines, low natural killer cell functionality, and active microbial infections.
A poster presentation entitled "Detection of Infectious XMRV in Peripheral Blood of Children" was made at the 1st International Workshop on XMRV in September of 2010 at the National Institute of Health in Bethesda, Maryland. In a small sample it was found that 14 of 17 children (82%) of the children were positive for XMRV infection.
I've been glued to the television the last couple days watching the situation in Egypt unfold and thinking of our community. Make no doubt about it, we are an opposition group. If there is any radicalism within us it's because our questions to the reigning medical establishment have been so consistently ignored, and we as a community have been attacked. What have we asked of the medical community which threatens them so greatly? A study on the rates of neurological disorders among vaccinated and unvaccinated children? If that would take too long, how about a similar study with a group of vaccinated and unvaccinated primates?
Some, like Dr. Andrew Wakefield, are attacked and an attempt is made to destroy their professional reputations. (Or if you are too highly respected, like former head of the National Institute of Health, Dr. Bernadine Healy, who has publicly stated that this issue has not been honestly investigated for fear of what might be found, you are ignored in any media stories.) Let me be clear about this. Dr. Wakefield is only the most visible medical person to be attacked. In my discussions over the years with various scientific researchers they have often shared similar stories with me. I expect any medical professional who honestly searches for the cause of autism to run the risk of an attack on his or her professional reputation.
And what in this orgy of ignorance that the medical community seems to have about the most common childhood developmental problem, have brave researchers discovered about our children?
Why bother to call attention to Dr. Paul Offit, the vaccine patent-holder who has led the attack on the idea that vaccines have anything to do with autism or any of the myriad of other ailments afflicting this generation of American children? Well, because other people are paying attention -- including the nation's pediatricians and the mainstream journalists who need to start calling him to account. Offit has a new book out -- "Deadly Choices: How the Anti-Vaccine Movement Threatens Us All." Here's the question doctors who recommend him to nervous parents, and parents unsure what to think, and journalists who interview him, need to ask: Why is Offit transparently opposed to ever studying the health outcomes of vaccinated versus unvaccinated Americans, even as he acknowledges that vaccines have a long history of causing serious side effects?
While his last book, "Autism's False Prophets," focused squarely on the disability now afflicting 1 in 100 children, Offit branches out here to deride those who have any concerns whatsoever about the safety of the current vaccine schedule. There is plenty of sympathy for parents of children who have died of infectious diseases, but perfunctory dismissal in cases where parents blame vaccines.
Thus Michael Belkin, whose daughter Lyla died after her hepatitis B shot, is treated as a gullible gadfly, goaded by Barbara Loe Fisher into heading "the Hepatitis B Vaccine Project at her National Vaccine information Center. Soon Belkin, a Wall Street financial adviser, was everywhere" -- everywhere being the CDC and Congress, which is exactly where he should have been as a citizen and parent who believes that Hep B is a dangerous and unnecessary childhood vaccine that killed his daughter. Sniffs Offit: "Despite Belkin's certainty that hepatitis B vaccine had caused his daughter's SIDS, study after study failed to support him."
Parents of girls who died after Gardasil vaccination get similar treatment. The idea that Gardasil is dangerous is "a contention refuted by careful study" and "established science."
And chickenpox vaccines are critically important because chickenpox can lead to shingles, "one of medicine's most debilitating diseases. Shingles is so painful that it has at times led to suicide. And shingles doesn't only affect the skin; sometimes when the virus reawakens it causes strokes, resulting in permanent paralysis. Chickenpox is a disease worth preventing." Absent is any acknowledgement of the evidence that the vaccine itself, by reducing cases of simple childhood chickenpox, has led to a big increase in shingles by removing the protective immunological "bump" those who already harbor the virus receive when they are re-exposed.
Hannah Poling and the government's $20 million concession that vaccines resulted in her autistic regression? Not mentioned. Billions paid out by vaccine court for all sorts of injuries over the past 20 years? Well, vaccine court is a strange place ...
Anyone concerned about any of these things fits Offit's definition of anti-vaccine, because vaccines don't cause any of them, because Paul Offit says so, a solipsism that is really quite breathtaking: "[B]ecause anti-vaccine activists today define safe as free from side effects such as autism, learning disabilities, attention deficit disorder, multiple sclerosis, diabetes, strokes, heart attacks, and blood clots -- conditions that aren't caused by vaccines -- safer vaccines, using their definition, can never be made."
Yet Offit himself yields an amazing amount of ground by describing unsafe vaccines -- including early polio shots and a rotavirus vaccine that was the immediate predecessor of his own. His technique is to situate all this as historical, part of the triumphant march of progress into the bright sunshine of vaccine safety. Here's a description I find especially astonishing: "When Barbara Loe Fisher burst onto the scene, several vaccines had serious side effects, every year causing allergic reactions, paralysis, or death. Public health officials and doctors didn't hide these problems. But they didn't do anything to correct them, either. And most parents had no idea they existed."
Public health officials did nothing to fix vaccine problems that led to paralysis and death? And parents didn't know about it? Is this not an indictment of the medical industry, and an unintentional endorsement advocates who have worked to remedy it? Does it not argue that at least some of the time parental observations may well be correct, an early warning system of the first order? Well, no, because apparently those things no longer happen -- to say otherwise, in Offit's parallel universe, would be anti-vaccine conspiratorial quackery.
Much of the book is a score-settling screed against anyone who's ever criticized him or vaccine safety surveillance, including Fisher, Jenny McCarthy and J.B. Handley. So it's no surprise that his "can't be done" argument against studying unvaccinated populations for any untoward outcomes arrives in the middle of an attack on Handley. Offit quotes J.B.'s comments on a Larry King segment in April 2009: "Larry, we have no idea what the combination risk of our vaccine schedule looks like. At the two-month visit, a child gets six vaccines in under fifteen minutes. The only way to test that properly would be to have a group of kids who get all six and a group of kids who got none and see what happens. They don't do that testing. They have no idea."
Offit's comment: "Handley was asking for a study of vaccinated and unvaccinated children. One result is certain: given recent outbreaks of Hib, measles, mumps, and pertussis, no vaccinated children would suffer and possibly die from preventable infections. It would be, of course, an entirely unethical experiment. No investigator could prospectively study children who are denied a potentially lifesaving medical product. And no university's or hospital's institutional review board worth its salt would ever approve such a study."
Offit goes on, outrageously, to compare Handley's proposal to the infamous Tuskegee experiment in which doctors withheld treatment from black males suffering from syphilis in order to study the natural course of the disease.
P-LEEZE. No one I know of is suggesting that a study of unvaccinated children deliberately withhold vaccination. Rather, there are growing numbers of never-vaccinated children in America -- a fact Offit acknowledges with dismay -- and plenty of families willing to participate in such a study. State governments have vaccine waivers on file for public school attendance that are another obvious source of non-life-threatening data.
The real problem for Offit is not an ethical one; the real problem is that any such study would trump all the self-interested industry and CDC studies that never manage to include never-vaccinated chldren as a control group. Informal efforts to do that -- by myself, J.B.'s Generation Rescue and others -- have pointed toward less autism and asthma, and been met by the medical establishment and its sycophantic sock puppets with an absolute frenzy of denial and misdirection.
In our book, "The Age of Autism -- Mercury, Medicine, and a Man-made Epidemic," Mark Blaxill and I discuss this aversion to doing the obvious. "A very simple test goes right to the heart of the vaccine controversy: What is the difference in total health outcomes, including autism, between vaccinated and unvaccinated populations? We would argue that we've uncovered a number of natural experiments in human populations that suggest we should be seriously concerned over the ever-increasing load of childhood vaccinations, especially in the United States. ... Oddly, when it comes to doing such studies in human populations, and studying the autism levels in the Amish, the homeschooled, or philosophical objectors, vaccine industry proponents resist mightily. Conducting human vax/unvax studies in existing unvaccinated groups would be so fraught with methodological problems that they are 'retrospectively impossible.' As for controlled studies, they would be so burdened with permission problems that they would be 'prospectively unethical.' In short, the resistance to the proposal to do vax/unvax work has not only taken the attitude that 'we already know the answers,' but 'we should not seek to know.' It's pretty hard to make scientific progress in the face of this kind of epistemological nihilism."
I am begging, on bended knee, that pediatricians quit putting Offit on a pedestal, and that mainstream journalists do their job and ask him why he is so averse to any study that involves the health of never-vaccinated children. Don't let him call you "anti-vaccine," and don't let him change the subject to the quite thoroughly separate issue of preventing deadly disease. That's an important topic, but there is room at the table for both effective public health policies against disease AND a fearless examination of whether today's vaccine schedule contributes to chronic health problems -- whether Paul Offit denies it or not.
Dan Olmsted is Editor of Age of Autism
Last Friday Age of Autism ran the statement on the draft of the CAA 2011 from the Combatting Autism Act Coalition of 70 autism organizations across the nation. Below is the start of that response, and below that, the press release issued by Senators Dodd and Menendez this week.
Breaking News: The Combatting Autism Act Reauthorization Bill from Senator Dodd's Office (D-CT) will be introduced this afternoon, and it will include some changes from draft we saw on Tuesday. Over 70 autism organizations representing thousands of autism families across the nation have endorsed the guiding principles set forth by CAARC. The draft we have seen falls short. Details below. You can read the guiding principles HERE at CAACoalition.org.
Statement from the Working Group of the Combating Autism Act Reauthorization Coalition on Senator Dodd’s Working Draft of a Combating Autism Act Reauthorization Bill; Dodd’s Draft Falls Short on Guiding Principles that 70 Autism Organizations Have Endorsed
On Tuesday December 14, 2010, Senator Christopher Dodd (D, CT) shared a working draft of the Combating Autism Act of 2011 (CAA 2011) that he plans to introduce later in the week. Submitted in the waning hours of the 2010 session and unsupported so far by a Republican co-sponsor, Dodd’s introduction of an actual bill was largely a symbolic gesture. Discussions over CAA 2011 will resume in the New Year. As with the original Combating Autism Act of 2006 (CAA 2006), bipartisan cooperation will be essential to an effort that truly commits our medical and scientific institutions to combating the autism epidemic, the most significant childhood public health crisis of the 21st century. The latest information available from the Centers for Disease Control and Prevention (CDC) estimates that 1 in 110 American children born in 1998 were stricken with autism. Read the full response to the bill at Dodd's Draft Falls Short of Necessary Actions to Address The Autism Epidemic
Press Release from Sens Menendez and Dodd:
Menendez will take the baton on Combating Autism Act from Dodd in next session of Congress
Legislation includes research, health care and support services components
WASHINGTON –Senators Christopher Dodd (D-CT) and Robert Menendez (D-NJ) today unveiled legislation to comprehensively address autism and support those living with it. Menendez will re-introduce the bill early in the next session of Congress. The legislation includes provisions to boost autism research, provide support services for affected individuals and families and to improve the health care of those living with autism.
Dodd said: “Autism can have a devastating effect on children and their families. Families struggling to raise a child with autism deserve our support, and they deserve answers. This legislation will help move us toward a better understanding of autism and help better support those living with this difficult disability. These efforts must carry on in the years to come, and I thank Senator Menendez for continuing to champion this important legislation in the next Congress.”
Menendez said: “Families in New Jersey, more than anywhere else, understand that we need to address autism on multiple fronts – with research, with early treatment and with a support structure and services for affected individuals and families. I am proud to join with Senator Dodd in introducing the kind of comprehensive initiative that is needed, and I thank him not only for his work on this legislation, but for his tireless advocacy for those affected by autism over the years. I intend to carry on Senator Dodd’s legacy by sponsoring and re-introducing this bill early in the next session of Congress.”
Specifically the bill will:
Extends Existing Authorizations
Makes Investments in Service Related Activities
Breaking News: The Combatting Autism Act Reauthorization Bill from Senator Dodd's Office (D-CT) will be introduced this afternoon, and it will include some changes from draft we saw on Tuesday. Over 70 autism organizations representing thousands of autism families across the nation have endorsed the guiding principles set forth by CAARC. The draft we have seen falls short. Details below. You can read the guiding principles HERE at CAACoalition.org.
Statement from the Working Group of the Combating Autism Act Reauthorization Coalition on Senator Dodd’s Working Draft of a Combating Autism Act Reauthorization Bill; Dodd’s Draft Falls Short on Guiding Principles that 70 Autism Organizations Have Endorsed
On Tuesday December 14, 2010, Senator Christopher Dodd (D, CT) shared a working draft of the Combating Autism Act of 2011 (CAA 2011) that he plans to introduce later in the week. Submitted in the waning hours of the 2010 session and unsupported so far by a Republican co-sponsor, Dodd’s introduction of an actual bill was largely a symbolic gesture. Discussions over CAA 2011 will resume in the New Year. As with the original Combating Autism Act of 2006 (CAA 2006), bipartisan cooperation will be essential to an effort that truly commits our medical and scientific institutions to combating the autism epidemic, the most significant childhood public health crisis of the 21st century. The latest information available from the Centers for Disease Control and Prevention (CDC) estimates that 1 in 110 American children born in 1998 were stricken with autism.
The Combating Autism Act Reauthorization Coalition (CAARC) wrote letters to Senator Dodd on November 19th and December 3rd. In these letters we urged Dodd to delay introduction of any reauthorization bill in order to leave sufficient time to consider the policy challenges our country faces with the autism epidemic in a more deliberate fashion so that we might craft a consensus bill--one based on bipartisanship, broad participation and wide support from the autism community—in an open and transparent process.
CAARC is concerned that Senator Dodd’s draft bill, while introducing some new and positive elements, does not yet provide necessary improvements to CAA 2006 and, more importantly, was drafted neither in a transparent process nor a bipartisan spirit. CAARC looks forward to continuing the discussion of CAA 2011 with both parties in the next congressional session. We all must take the necessary time and care to authorize and implement a bill that will effectively address the critical challenges presented by the American autism epidemic.
Progress in Some Areas
In the draft bill, the most important improvement over CAA 2006 that Senator Dodd proposes is contained in the findings section. There he acknowledges that “with prevalence estimates increasing at an alarming pace, autism is a national health emergency.” According to CAARC’s first guiding principle, “The reauthorized bill should embody the sense of urgency appropriate to the problem. There must be no sugar-coating of the national health emergency we face with autism, no hedging language conceding merely that real increases “cannot be ruled out.” CAA 2011 needs to include a clear acknowledgment of the rising trends by birth year and age group.”
In large part, Dodd’s draft meets CAARC’s standards in declaring autism a national emergency; this declaration is the first and necessary step on the way to a rational and coherent national autism policy.
There are other positive aspects to Senator Dodd’s draft. The draft requests $2.75 billion over five years in federally funded research into autism, a substantial increase over the five year funding authorization proposed in CAA 2006. The bill also authorizes $3.15 billion over six years in autism services funding. CAA 2006 was primarily concerned with research on cause and treatment. Several "services" bills have been introduced during the past few years but have made no progress. The draft CAA 2011 combines, for the first time, research and services. CAARC welcomes these proposed authorizations; clearly, the autism epidemic deserves a vigorous federal response, one which includes both honest investigation of the factors that have provoked the epidemic and critical assistance to affected families and individuals.
CAARC believes that $6 billion of federal autism spending providing for necessary expenditures in prevention, treatment and services could yield extraordinary returns on an admittedly large taxpayer investment. This return will be realized, however, only if the spending is well targeted and the federal officials who govern and manage that spending are held accountable for results.
The Need for an Open and Transparent Legislative Process
At Wednesday’s Mt. Sinai autism and environmental science conference the audience was subjected to an endless oration about the CDC’s “Learn the Signs” pr campaign as well as a vague discussion of “CDC/ stakeholder collaborations.” What either of these subjects had to do with environmental toxins is still unclear to me but then again I was woozy 45 minutes into the lecture.
How nice if it were true that the CDC has reached out to advocacy groups. However, I had no idea what Dr. Coleen Boyle was speaking about. CDC/ ASD family projects? Who? What? Where? When? If I had been allowed to ask questions we might have been able to learn something. But thanks to Dr. Phil Landrigan for barking “NO questions!” at me, we never got an answer.
Until now. Thank you Laurette Janak for attending a CDC “stakeholder” partnership program starring Ms. Alison Singer. (listen here) Ms. Singer as you may remember had to leave her position at Communications Director of Autism Speaks because she unable to represent the community of families. Ms. Singer has a daughter who evidenced signs of autism from babyhood. Her lovely daughter Jodie was born with a form of classic autism. Jodie never regressed, never had adverse vaccine reactions, and never developed encephalitis, febrile seizures, GI disease or chronic autoimmune dysfunction.
Ms. Singer has no medical training and, unlike many of us, has been fortunate not having spent weeks to months of our lives taking an ASD child to the emergency room for seizures, blocked bowels, endoscopes, IVIGs, muscle biopsies, EEGs….Ms. Singer has a healthy ASD child. She now runs a small advocacy group who membership information has not been made public. Dr. Paul Offit, a vaccine patent holder and millionaire many times over thanks to his vaccine patents serves on her board and helps fund the organization. I do not believe this fact was disclosed at this CDC funded vaccine education workshop.
By Lee Camp
The last time I was at our local library I noticed the book Yellow Dirt, An American Story of a Poisoned Land and a People Betrayed by Judy Pastenak (HERE) in the recently published display. I was looking for books on gardening and herbs so I was going to pass it by but I figured I would not find it again so I checked it out. It sat unread in my house for a couple of weeks but once I started it I finished it in a weekend. (Autism has freed us from large Thanksgiving weekend gatherings with family and friends.)
Yellow Dirt is the story of how corporations extracted uranium for the US Government and for decades exposed the Navajo Indians to uranium, heavy metals in the ore and compounds used to extract the uranium. According to the book, virtually no safety procedures were employed to protect the workers at the mine or the larger environmental area. When mining was complete the mines were shutdown with essentially no clean up. This resulted in contaminated soil and water.
The participation of a long list of state and federal agencies is described in Yellow Dirt. The Public Health Service studied the Navajo miners as they got sick and started dying but did nothing and said nothing even to the sick miners. The Environmental Protection Agency spent decades not cleaning up contaminated areas including homes. And the CDC is almost never present despite skyrocketing rates of cancer, miscarriages and birth defects. Does this feel familiar to you?
“We just listened to a very lengthy speech and I would like to ask a question,” I said into the microphone planted in the aisle of the auditorium (ostensibly so people COULD ask questions.)
OK, but whose fault is that? Why is this guy yelling at me? Is it my fault he talked three times longer than he was scheduled? Is it my fault he allowed Dr. Boyle from the CDC drone on for almost an hour, double her allotted time?
The Mt. Sinai conference environmental science in autism and learning disorders was both incredibly bizarre and disappointing.
Sorry to Kristen, Mary, Lisa, Kim, Katie and everyone who got babysitters and traveled from outside the city to attend. If I knew the day was going to be one long diatribe, with no time for questions or discussion I never would have encouraged you to attend.
Initially I was really encouraged that Mt. Sinai, totally AWOL in ASD environmental research was holding an environmental science workshop. Great! I was also very pleased that Autism Speaks was a sponsor and made it possible for parents to attend the event for free. That was a terrific idea.
When I arrived I read the agenda. Dr. Landrigan (good), Dr. Linda Birbaum form the NIEHS (OK), Dr. Coleen Boyle from the CDC (why- they are like the same person), Dr Irva Hertz Pinchero (great!), someone from the National Children’s Study….lots of bureaucrats.
Dr. Birbaum gave a great sales pitch for the NIEHS. This committee, that committee, agent orange, gene + environment….Lots of nonspecifics. To be fair Birbaum did do an excellent job in conveying the dangers of anti-flammable toxins in our clothes and mattresses. She illustrated the ubitiquous nature of unregulated toxins well. Birbaum spoke about the fact that pesticides for commercial use need not undergo ANY consumer safety testing and how that had changed in Europe but not in the US.
Birbaum was conveying a sense of interest that I normally find missing at IACC. But then she got to the Somalis. Almost 3 YEARS ago Lyn Redwood raised the issue of the Somali ASD cluster in Minneapolis. The autism community had urged the CDC and NIEHS to thoroughly investigate potential environmental triggers behind this cluster. Somalis have 17x the rate of ASD as do non Somali Minnesotans! Most Somalis point to over vaccination as the trigger.
What has the NIEHS done about this astounding Somali cluster over the past 3 years- a whole lot nothing. But today there was talk of NIEHS’ vague partnerships counting the population as well as other unspecified activities. OK, I will believe that when I see it. Birbaum would not say “cluster” nor did she share the fact that they have 17x the typical rate of ASD. No Birbaum said “there seems to be an autism issue…more autism among this population…something they are seeing in Sweden too.” What I inferred from that comment was; one: a clumsy effort to minimize this thusfar ignored prime opportunity for environmental science research, and two: a deliberate effort to downplay the idea of a cluster and three, pass the buck to Sweden.
Has there been a statement made with less proof than this one?
I don’t think so. Consider the hopeless Wired Magazine journalist, Amy Wallace, making the following statement:
“In fact, the growing body of science indicates that the autistic spectrum — which may well turn out to encompass several discrete conditions — may largely be genetic in origin. In April, the journal Nature published two studies that analyzed the genes of almost 10,000 people and identified a common genetic variant present in approximately 65 percent of autistic children.”
Ms. Wallace, like many other reporters, offers two separate misstatements here that must be addressed:
First, she suggests that the “the growing body of science indicates that the autistic spectrum may largely be genetic in origin.” This comment is absurd, particularly given what a crisis the world of genetic researchers are actually going through, as described in an excellent article published in the New York Times in April of this year called, “Genes Show Limited Value in Predicting Diseases”:
“The genetic analysis of common disease is turning out to be a lot more complex than expected. Since the human genome was decoded in 2003, researchers have been developing a powerful method for comparing the genomes of patients and healthy people, with the hope of pinpointing the DNA changes responsible for common diseases. This method, called a genomewide association study, has proved technically successful despite many skeptics’ initial doubts. But it has been disappointing in that the kind of genetic variation it detects has turned out to explain surprisingly little of the genetic links to most diseases…Unlike the rare diseases caused by a change affecting only one gene, common diseases like cancer and diabetes are caused by a set of several genetic variations in each person. Since these common diseases generally strike later in life, after people have had children, the theory has been that natural selection is powerless to weed them out. The problem addressed in the commentaries is that these diseases were expected to be promoted by genetic variations that are common in the population. More than 100 genomewide association studies, often involving thousands of patients in several countries, have now been completed for many diseases, and some common variants have been found. But in almost all cases they carry only a modest risk for the disease. Most of the genetic link to disease remains unexplained.”
Autism is perhaps the most prevalent of many diseases where the search for common variants has been a bust. Like clockwork, a new finding of a variant in autism is announced in one study, only to be unreproducible in the next (due to random chance common in genome-wide analysis) and explained perfectly by Mark Blaxill (HERE).
If autism were genetic, children would need to have specific genes in order to have thedisorder, and none, and I mean NONE, have been found.
As one example, a genome-wide study on autism (more on the study in a moment) appeared in the journal Nature in October 2009. The researchers, from Harvard and MIT, were surprisingly forthright in characterizing the current state of genetic autism research:
“Modern approaches that harness genome-scale technologies have begun to yield some insights into autism and its genetic underpinnings. However, the relative importance of common genetic variants, which are generally present in the human population at a frequency of about 5%, as well as other forms of genetic variation, remains an unresolved question…Although the Nature paper identifies a handful of new genes and genomic regions, the researchers emphasize that the findings are just one piece of a very large — and mostly unfinished — puzzle.”
Unresolved? Mostly unfinished puzzle? Unlike many journalists, these researchers don’t sound very definitive. In fact, in the study itself, the researchers spell it out even more clearly, saying “attempts to identify specific susceptibility genes [to autism] have thus far met with limited success.”
Looking at the website of Autism Speaks, an organization that has had frequent run-ins with our community but certainly stands alone as the largest organization dedicated to autism science states:
“The best scientific evidence available to us today points toward a potential for various combinations of factors causing autism – multiple genetic components that may cause autism on their own or possibly when combined with exposure to as yet undetermined environmental factors.”
By Dan Olmsted and Mark Blaxill
Seventy-three years ago, Elizabeth Peabody Trevett, a pediatrician and pioneer in promoting mass vaccination for infants, gave birth to a boy named John who became the seventh child ever diagnosed with autism. She presumably vaccinated her baby, and perhaps herself while pregnant, with the same shots she administered to her own patients. One of those shots, the newly developed diphtheria toxoid, was the first to contain the ethyl mercury preservative, thimerosal.
Today, pediatricians and public health officials scoff at concerns that thimerosal, still used today in most flu shots recommended for all pregnant women and infants older than 6 months, could cause autism. But after researching our new book, "The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic," we are much less sanguine about such an outcome.
Our conclusion: The facts of Case 7 fit with a common familial background exposure in the first cases to newly commercialized ethyl mercury compounds in agriculture and vaccines. They suggest children, then as now, are at risk from the dangerous and indefensible practice of injecting them with mercury for the stated purpose of protecting their health.
Elizabeth Peabody Trevett graduated from Johns Hopkins Medical School and won a fellowship to Harvard where she was one of seven pediatricians who pioneered the well-baby visit – at which vaccines are routinely administered. Her son John was born in November 1937. She subsequently divorced her husband, psychiatrist Laurence Trevett, and resumed using her maiden name, Peabody.
A few years later, back in Maryland, she was quoted about the importance of vaccination in an Annapolis newspaper article: “Too many parents, said Dr. Peabody, have the proper shots given and then relax, forgetting that booster shots are needed and that immunization does wear off. Speaking specifically of some of the most prevalent ailments, she stated that a child cannot be vaccinated against smallpox too often and it should be done for the first time when a baby is between three months and one year of age. In the case of diphtheria, booster shots are extremely important.”
Diphtheria was the first mass vaccine to contain thimerosal, starting in the 1930s just as the first autism cases were identified. It would have been widely available at a teaching hospital like Harvard at the time John was born.
Following her passion for public health, Elizabeth Peabody later set up a well-baby clinic in Iraq, again emphasizing the importance of vaccinating thousands of babies, and then joined the Public Health Service in Atlanta as a regional administrator for children’s health programs.
As flu season kicks into high gear this year in the United States, infants, pregnant women and nursing mothers are among the millions of Americans whom public health officials are urging with unprecedented fervor to get a flu shot. Because most flu shots contain mercury, and because the CDC has declined to express a preference for giving these groups a mercury-free version, this means millions of the most vulnerable among us are getting a significant dose of the dangerous neurotoxin – some at grocery stores and airports and retailers, some without even having to get out of their car. Tracking short-term, localized and mild adverse reactions would seem difficult, and following up on any associations with the onset of chronic or delayed outcomes like autism all but impossible.
From Dan Olmsted and Mark Blaxill: Our efforts to spread the evidence about "The Age of Autism" are continuing. Dan Olmsted recently spoke with Dan Burns from The Dallas Morning News blog here HERE and with KNEWS 94.3 in California here (HERE). We'll be in Minneapolis-St. Paul next Saturday (See HERE), and plans are shaping up for visits to Dallas just after the New Year, Missouri in February, Los Angeles in March, Illinois and Indiana in May, and other points in between. Stay tuned, and see you on the road!
Dan Burns, author of Saving Ben, interviewed Dan Olmsted about the new book he co-authored with Mark Blaxill, The Age of Autism Mercury Medicine and a Manmade Epidemic at the Dallas New blog. Here's the beginning of the interview, please pop over to Dan's blog to read and comment on the full post. Dallas News Blog Full Interview
Dan Olmsted, an investigative reporter, left his job as a senior editor for United Press International (UPI) to pursue what he called "the story of the century." After a five-year journey with co-author Mark Blaxill (statistician, business consultant, and father of a child with autism), Olmsted and Blaxill recently released The Age of Autism: Mercury, Medicine, and a Man-Made Epidemic, a devastating account, in Robert F. Kennedy, Jr.'s words, "that shows how medical and manufacturing interests have mounted an assault on human health for decades and covered their tracks along the way."
I talked to Dan Olmsted about their journey.
Burns: What makes autism the story of the 21st century?
Olmsted: Children are the future. Autism is epidemic among this generation: one child in one hundred, up 50% in less than ten years. While treatable, and sometimes reversible, most kids with autism will grow up to be adults on the autism spectrum. This epidemic is eating away at our society from the inside. It's a national security issue. Outside of a nuclear weapon detonated in a major city, what could be more important?
Burns: How has this been a journey of discovery for you?
Olmsted: The deeper we dug, the bigger the issues. We went to the source material, the eleven sentinel cases in Leo Kanner's 1943 Nervous Child journal article, "Autistic Disturbances of Affective Contact," and looked at them with fresh eyes. Out jumped several eye poppers, never recognized as relevant that ended up shaping the book: familial exposure to the same toxic substance.
Burns: And those are the clusters you write about in the book. What are they?
First, forestry and plant pathology. Case one is from a small lumber town called Forest. Case two is the son of a plant pathologist. Case three is the son of a forestry professor. Forest, plants, forest. Interesting.
I put that pattern to Mark, who asked, "Could these cases could be driven by exposure to the new organic mercury fungicides used in forestry and agriculture?" Yes, they could. And ethyl mercury, the kind of mercury used in fungicides, is the same kind that was used in vaccinations. That was an unexpected, jaw dropping discovery.
Burns: Any other surprises?
Olmsted: Syphilis. As we poured over the source material, it looked like the worst form of syphilis - neurosyphilis, which results in paralysis, insanity, and death - was caused by the medicine that was used to treat it: mercury.
We went back into those early studies, including the infamous Tuskegee Syphilis Study from the 1930s, when the U.S. Public Health Service deliberately withheld treatment from black Americans so they could study them as they went insane and died. Those who were not treated with mercury stayed healthier longer and did not go insane. Interesting.
That led us to a third surprise. Sigmund Freud observed that most of the young adults that he treated for hysteria were women whose fathers had syphilis. He didn't know what to make of it. He also observed that nursing was among the most common occupation of hysteria patients.
Today we can make the connection that Freud missed. After treating their syphilitic fathers with mercury rubs, these young adults developed paralysis, seizures, and hallucinations - symptoms now shockingly obvious as signs of mercury poisoning.
We encourage you to learn more about the mercury based vaccine preservative Thimerosal, as it is in the news during flu shot season. HERE is the material data safety sheet so that you can make informed healthcare decisions for yourself and your loved ones.
According to the CDC in Atlanta, the majority of flu shots available for Americans this season contain mercury.
How much influenza vaccine is projected to be available for the 2010-11 influenza season? At the current time, six influenza vaccine manufacturers are projecting that as many as 160-165 million doses of influenza vaccine will be available from currently licensed manufacturers in the U.S. for use during the 2010-11 influenza season.
How much thimerosal-free influenza vaccine is expected to be available for the 2010-11 season? For the 2010-11 season, manufacturers project producing approximately 74 million doses of thimerosal-free or preservative-free (trace thimerosal) influenza vaccine.
SafeMinds introduces its new flu vaccine campaign to get the mercury out!
Why settle for toxic flu shots when there is an alternative? Flu vaccine manufacturers claim they can produce enough flu shots without mercury to protect those that need them but because the ones with mercury are slightly cheaper, health care providers continue to order flu vaccines with mercury. It is time for consumers to demand mercury-free vaccines. Isn't your health worth more than a dollar or two?
Find out how you can help spread the word HERE.
From Mark Blaxill and Dan Olmsted: We're heading to New York this weekend for stops including Mount Kisco on Friday and Yonkers on Saturday -- click on our book at left to see details, and if you can join us, please do. Last Friday, we had a good crowd at the Brown University Bookstore in Providence, sponsored by the National Autism Association (that's us with NAA President Wendy Fournier). We've already started making waves -- David Sheffield, a columnist for the Brown student paper, says HERE we should never have been allowed to speak! Banned at Brown -- has a nice ring to it, doesn't it? Click on over and let the author know your feelings if you're so inclined. Next week we're back in New York to do the Leonard Lopate radio show, then to California at the end of the week for multiple events. Stay tuned and see you on the road.
Go to The Age of Autism for more details and info on where to order.
Mt. Kisco, NY
SafeMinds & Bedford Autism Spectrum Support (BASS)
Mt. Kisco Public Library—Community Room
100 East Main St. Mt. Kisco, NY 10549
Navigating the Spectrum/SafeMinds
35 E. Grassy Sprain Rd. (Hudson Valley Bank Building)
Yonkers, NY 10710
Long Beach, CA
ARI/Defeat Autism Now Conference
All day event Friday, Saturday, and Sunday
Long Beach Westin
333 East Ocean Blvd.
Long Beach, CA 90802
San Diego, CA
Talk About Curing Autism (TACA) Chapter
6:30 - 8:30 pm
Rancho Bernardo Community Presbyterian Church
17010 Pomerado Road
San Diego, CA 92128
Watch Mark Blaxill and Dan Olmsted on Imus on Fox Business channel as they discuss their new book, The Age of Autism Mercury Medicine and a Manmade Epidemic. Thank you to Don and Deirdre Imus (check out the HuffPo post HERE she wrote that now has over 1100 comments) - for their unwavering support for the autism community. (Thanks to Ginger Taylor for the links.)
Managing Editor's Note: Mark and Dan were on Imus in the Morning to promote their new book, The Age of Autism Mercury Medicine and a Manmade Epidemic. Aof A reader and contributor Bob Moffit was kind enough to create an excellent unofficial transcript for us. Thank you, Bob. KS
By Bob Moffit
IMUS outlines the guests to appear on today's show:
0610 AM .. IMUS: "Congressman Peter King, Chris Wallace, Dan Olmsted and Mark Blaxill .. who are they? Well, these two guys wrote the book "Age of Autism: Mercury, medicine and a man-made epidemic". I think what they're saying is, that there is a direct link between thimerosal and autism. Which makes everybody .. on both sides .. hysterical. Here's the problem .. there's no evidence that thimerosal "causes" autism .. there's no evidence it does not.
Charles McCord: "Conclusive evidence.
IMUS: Yes, there's plenty of studies
MCCORD: Anecdotal evidence.
IMUS: And, there's billions of dollars spent by the pharmaceutical industry ... and ... people who suggest there is a link are characterized as being insane. Whatever. As I said for years .. and .. we talked about it and we're not going to talk about it a lot. It never made any common sense to me that you could inject a neuro toxin, ethylmercury, more toxic than what's in fish, into the bloodstream of an infant or a child, or anyone ... in the multiple amounts or doses .. and .. not have it do something. It may not "cause" autism .. but .. you would think .. well .. of course it does. So, it's a raging argument. I don't want to get in the middle of it, but, I'm certainly happy to air their views.
MCCORD: That's reasonable.
IMUS: I probably agree with them, although I can't .. I do agree with them ... but ..I have no evidence. I have no evidence...it's just one of my common sense (inaudible).
IMUS usually asks guest appearing on his show to name their "top five" list of favorite songs ..
Mark Blaxill's favorite "top five" Dan Olmsted's
"Feeling Alright" Joe Crocker "Doctor My Eyes" Jackson Browne
"I Feel Good" James Brown "Like a Rolling Stone" Bob Dylan
"Shining Star" Earth, Wind and Fire "Kodachrome" Paul Simon
"Steamroller" James Taylor "Suite: Judy Blue Eyes" Crosby, Sills
"I Shot the Sheriff" Eric Clapton "Jeanson" Graham Blvd
IMUS: Not a bad selection from these two guys who wrote this book "Age of Autism". Gives you a chance to review people who think mercury causes autism. Although in the packaging of one of these vaccines, it warns a possible side-effect is autism. I hate to bring all this up .. but .. once you've met a parent who has an autistic child, a child with autism rather .. maybe you'd change your tune on that. But, you have to be reasonable, sensible and I think these two guys are .. and .. we'll find out.
0830 IMUS: "The Age of Autism" written by Dan Olmsted and Mark Blaxill. It's just been released with forward by our old friend David Kirby, who wrote "Evidence of Harm", one of the better books ever written about the link between thimerosal and autism. Please welcome Dan Olmsted and Mark Blaxill. Alright .. guys, how are you?
MARK: We're doing good.
DAN: Good morning.
IMUS: So, Dan, who are you and what do you do now?
DAN: I run a blog called "Age of Autism" and I've done reporting on autism for about five years now. I started at UPI writing a column of the same name .. got interested in whether the history of the disorder could give us more clues than we already possessed about what might be going on here. That's how I got started.
IMUS: Mark, what do you do?
MARK: Well, I have a day job, I'm a business guy, but, I'm also the father of a daughter who is diagnosed with autism. She's fourteen years old now.
IMUS: One thing you have is a great voice. So, when was she diagnosed?
MARK: When she was about 2 1/2 years old, she had developed normally for the first year of life, she was beautiful, social, interactive, developing language .. and then .. sometime after she was one year old, she began slipping away from us .. which is an experience a lot of families have.
IMUS: Where is she on the spectrum?
Tune into Imus in the morning Thursday, 9/23 on Fox Business Channel around 8:30am to hear Dan Olmsted and Mark Blaxill discuss their new book, The Age of Autism Mercury Medicine and a Manmade Epidemic. Visit the Imus site HERE.
The Age of Autism Book The Age of Autism book tour Tour kicked off Monday in Wrentham, Mass., where we were hosted by the TACA Chapter led by Cheryl Gaudino (left). We signed books, premiered our presentation, and really enjoyed the lively discussion afterward. Thanks for getting us off to a great start. We were especially pleased to meet Kim's parents, Richard and Elena Rossi, who live nearby (below). They've gotten an early read of Kim's upcoming book and are still talking to her -- and laughing! Tomorrow, Thursday, Sept. 22, we'll be on Imus at 8:30 a.m., simulcast on radio and the Fox Business Channel. Friday from 12:30 to 1 p.m., we'll be on Gary Null's radio show. On Friday at 6 p.m., we'll be at the Brown University Book Store courtesy of the NAA. Click HERE or on the book image at left for details. Meanwhile, speaking of the book, check out a post by Ginger Taylor over at Adventures in Autism -- the artwork is priceless. Hope to see you soon. -- Dan Olmsted and Mark Blaxill
Today marks the publication of "The Age of Autism -- Mercury, Medicine, and a Man-made Epidemic." If you click HERE or on the book cover at the left top, you'll see a new page about the book: Tour dates, an excerpt, and a button to purchase the book through the SafeMinds store. We'll be updating the page (and keeping you posted here as well) as we add cities to our tour, feedback, etc. Thanks to Ginger Taylor for setting this up, and thanks to a publicity team that has been hard at work for months: Laura Bono, Lyn Redwood, Becky Estepp and Katie Wiesman. We also want to thank each of you for making this book a reality by reading, commenting and supporting this blog. As we say in the Acknowledgements: "Many of the ideas in this book were introduced on the blog, and our readers' responses have helped refine them. The community that has grown up around Age of Autism has carried us forward on a wave of shared energy and commitment and we are privileged to serve such a generous and engaged group." Thank you. Please buy the book and help share the evidence. We hope to see you soon. -- Dan Olmsted and Mark Blaxill.
Tune into "Go Green Radio with Jill Buck" TODAY Friday, March 5 at noon Eastern to listen to Mark Blaxill and NAA's Rita Shreffler in “Part II: Is the Environment to Blame for Autism?”
Good parents advocate for their children, and try to keep them safe from harm. Suppose your children were being harmed by the air they breathe, by chemicals sprayed on their schoolyard, or by vaccinations recommended by your most trusted ally in keeping your child healthy – your pediatrician. If that were the case, you’d likely do all that you could to protect your child, but you’d soon find that as a lone parent it is very difficult to sway the large organizations and companies that control the environmental hazards around your child. And then…you’d do what this week’s Go Green Radio guests did…you’d band together with other concerned parents to make a difference. This week we are joined by the Executive Director of the National Autism Association, Rita Shreffler, and the editor-at-large for the Age of Autism, Mark Blaxill. Rita and Mark will discuss their experiences as parents of autistic children, and help us understand the environmental toxins that may be responsible for rising rates of autism in America.
By Brita Belli
Read the full article in E magazine.
Autism cases are on the rise. Or so the most recent data would have us believe. The Centers for Disease Control and Prevention (CDC) found that 1 in 100 children in the U.S. have been diagnosed with autism spectrum disorder (ASD)—up from 1 in 150 in 2007. A study in the journal Pediatrics in October 2009 revealed similar numbers—parents of 1 in 90 children reported that their child had ASD. With boys, the rate of ASD was 1 in 58. Without a doubt, autism is the country’s fastest-growing developmental disability, affecting more children than cancer, diabetes and AIDS combined. Still, in dealing with a childhood disorder that ranges from “highly functioning” to uncommunicative, and such a long list of potential triggers and treatments, even the numbers themselves are subject to questioning.
“It irritates me to no end that we still argue over whether there is an increase in incidence,” says Michael Merzenich, Ph.D., a neuroscientist at the University of California San Francisco who has pioneered research in brain plasticity (essentially, retraining brains) and leads the brain-training software company Posit Science. “I think there is lots of evidence for increased incidence,” Merzenich says. “Overwhelmingly it supports that there are things in the environment that are contributing to the rate of incidence. But people still argue.”
Doubters point out that autism is better understood today and more frequently diagnosed. Some have even suggested that an autism diagnosis may be a means to an end—a way for parents to get the immediate speech and physical therapies their children need to prevent long-term delays. Massachusetts-based health writer Lisa Jo Rudy, mother to one autistic child, Tom, 13, as well as to a 10-year-old daughter, Sara, is one such skeptic. “Are we simply calling what used to be called being a ‘dweeb’ autism?” Rudy asks. The National Institute of Mental Health writes: “It is unclear from the report in Pediatrics whether the 1 in 90 estimate is measuring a true increase in ASD cases or improvements in our ability to detect it.”
Researchers like Merzenich say the waffling over numbers is beside the point—too many children are living with the disorder, and not enough research is focusing on what’s causing it or how best to treat it. The term “autistic” was not even part of the modern lexicon until it was introduced by Hans Asperger and Leo Kanner in the 1940s—the word itself (containing the Greek autos) describes the self-absorption that is a hallmark of the disorder. While it takes many forms, autism affects social interaction and communication and leads to the development of intense habitual interests. Often, after a year of seemingly normal interaction, autistic kids will fail to respond to stimuli, make eye contact or turn at the sound of their name. They may not talk readily, or they may repeat themselves incessantly. They are likely to follow compulsive behavior, such as shaking their hands, stacking objects or repeating daily activities the exact same way each day. The treatment is years of intensive—and expensive—therapy.
Richard Lathe, Ph.D., a molecular biologist and former professor at the University of Strasburgh and Edinburgh University who wrote Autism, Brain, and Environment (Jessica Kingsley Publishers), calls the latest autism cases “new phase autism.” Explaining the term, Lathe says, “The rate of autism was quite low between the 1940s and 1980s. The beginning of the 1980s saw a marked increase in the incidence and prevalence of autism. Rates have gone up at least tenfold. It indicates that it can’t just be genetic—it must be environmental....”
Read the full article and subscribe at E Magazine.
By Katie Wright
A few months ago I wrote to the new Director of the NIH, Dr. Francis Collins, and asked to meet him with my parents, Bob and Suzanne Wright Dr. Collins graciously responded saying that he would very much like to have a meeting with us and some autism organization advocates.
My main reason for the request is because the majority of autism families do not feel heard by IACC nor are they fairly represented among the public members. Only one person of the 20 odd members on the committee has any experience at all with the all too common needs of children like mine, Lyn Redwood. Meanwhile there are committee members from the Dept. of Deafness, Medicaid and Substance Abuse all casting votes for and against (and it is mostly against) important scientific research they cannot possibly understand. This is absurd.
The lack of services for ASD people of all ages is a critical issue facing our community. Expertise in planning group homes, job training or respite care does not translate to scientific knowledge in stem cell research, oxidative stress, gastrointestinal disease or immunology. Obviously the same holds true for the neurologists on the committee regarding their limited insight into special education or adult services.
In this disparate roomful of scientists, parents and aspergers adults, there was agreement on two things: IACC is failing, it moves incredibly slowly, is way too bogged down with bureaucrats, has yet to embrace innovative research and autism organizations are virtually unrepresented. There was also complete agreement that IACC has done a poor job addressing the tremendous and immediate service needs of children and adults affected by ASD. In order to do justice to both autism services and autism research we need to separate IACC into 2 committees: services and research. That way each subject will have a committee staffed by people with the appropriate expertise.
An even better option is to abolish IACC and form a virtual Autism Institute, much like the HIV Institute. That way we would attract federal members with deeper and more current scientific understanding of autism.
One of the most serious problems with IACC is the total absence of clinical specialists. Dr. Yvette Janvier, serves as a “public member.” Last fall, Lyn Redwood was advocating for an investment in GI research after speaking about the recent death of young ASD girl who died due to an untreated impacted bowel. Dr. Janvier’s immediate response was not one of compassion, concern or even respect. No, Janvier literally said, “Phhsssss! Anyone could have diagnosed that! In 20 yrs of (neurology) practice I have never seen a sick ASD child or a child with these ‘immune’ problems!” Javier went on and on about how IACC should not focus on such “rare” problems like GI disease or immune dysfunction.
CDC Brings Bad Tidings: 40,000 Children Diagnosed With Autism In This Year Alone.
SafeMinds calls for immediate action from public health officials and implores journalists to ask the tough questions listed here:
Atlanta, GA – A study to be released Friday by the Autism and Developmental Disabilities Monitoring (ADDM) Network of the Centers for Disease Control (CDC) is expected to report that autism prevalence has reached the epidemic rate of 1 in 100 children. The new estimate is for children born in 1996 and represents a 50% increase in just two years over a 2007 CDC calculation of 1 in 150 for children born in 1994. Approximately 40,000 children will be diagnosed with autism this year alone. SafeMinds calls for cutting edge research now!
The rapid increase in such a short period cannot be accounted for by changes in diagnostic criteria or greater awareness of autism. The children born in 1994 and in 1996 were diagnosed under the same version of the Diagnostic and Statistical Manual (DSM IV), which was issued in 1994 before any of these children were diagnosed (on average, at age 4 years) and has not changed since then. Autism began its sharp growth curve with children born in 1988-1989 – 8 years after autism had been added to an earlier DSM version in 1980. Any increase in awareness would have had an equal effect on children born in 1994 and in 1996. Children born in 1994 and in 1996 would also have been eligible for the same educational services under IDEA, which was revised to include autism in 1990 and has not been changed since then.
Since purely genetic disorders do not exhibit such a rapid change in prevalence, the increase in autism points to environmental factors as the primary cause of autism. “It is imperative that public health officials take immediate and substantive steps to investigate the environmental factors that are most likely driving the autism epidemic,” said Sallie Bernard, Executive Director of SafeMinds.
Wow, check out the 97 items in the auction for SafeMinds. We autism families might not be able to afford everything on the list, but we can share the link with family and friends who ask, "How can I help?"
Items include lunch with David Kirby, lunch with Katie Wright, an autographed baseball by NY Yankee Mariano Rivera, gift cards to your favorite retailer and many more!
Click HERE to go to the auction site now! Bidding ends on December 10.
Autism Prevalence Now At 1 in 91 Children, 1 in 58 Boys
SafeMinds Calls For A Ban on Thimerosal from Seasonal and H1N1 Flu Vaccines In Pregnant Women and Young Children
Monday, October 5, 2009, Reston, VA - Today the Maternal & Child Health Bureau of Health Resources and Services Administration (HRSA), US Department of Health and Human Services released a study evaluating the number of children in the U.S. who currently have a Autism Spectrum Disorder (ASD) diagnosis, The Prevalence of Parent-Reported Diagnosis of Autism Spectrum Disorder among Children in the United States, 2007. The Study evaluated data from a national Survey of Children’s Health and found that 1 in 91 children between the ages of 3 and 17 currently carry an ASD diagnosis -1 in 58 boys.
Even more alarming, for the subset of children between ages 6 and 14 immunized during the 1990’s the prevalence is actually 1 in 71 children with an autism diagnosis. This age group represents children in the U.S. with the highest exposure to thimerosal, the mercury preservative routinely used until CDC, AAP and industry recommended its removal "as soon as possible" from all childhood vaccines. Despite this recommendation, mercury, one of the most neurotoxic substances on the planet, is still used in most seasonal and H1N1 vaccines.
Click HERE for the podcast on Autism One Radio.
The first photo is of David presenting, Mark is seated facing the attendees. The second photo is of Mark presenting. Waiting for updates from today's briefing by Reps. Carolyn Maloney (D-NY) and Christopher Smith (R-NJ) all week. You can view the PowerPoint presentation in full HERE. The podcast will be available after the event at Autism One Radio.
Age of Autism Editor at Large Mark Blaxill was featured on Boston's Chronicle news program in a feature about toxic kids.
What is making American children sick? Cancer rates are climbing. Cases of autism, attention-deficit hyperactivity disorder, and asthma are through the roof. Is the answer all around us – in the food our kids eat, the air they breathe, and the clothes they wear? Tonight, Chronicle investigates a provocative thesis about the American lifestyle and its effects on children's health
The show featured the book, Poisoned Profits: The Toxic Assault on Our Children (see the website HERE) by Philip and Alice Shabecoff. Take note of the link to our sponsor www.SafeMinds.org on the WCVB site!
By Katie Wright
I did not want to write this piece or share this information. I was hoping the leadership at Autism Speaks would take care of this problem. For far too long Dr. Andy Shih and Ms. Alison Singer have been representing only their own rigid belief systems in their roles at AS, doing whatever necessary to thwart environmental and vaccine research. In the meantime so many opportunities have been squandered and our children are paying the price.
I will not editorialize here; just give the reader the facts. Families and especially AS supporters have a right to know how their children’s interests are being represented.
1) Dr. Andy Shih, VP of Scientific Affairs, an avowed disbeliever of vaccines as a possible trigger for autism, appeared on “Montel” a few years ago. Shih vehemently argued that vaccines are totally safe, can not and do not trigger autism and that excessive quantities of mercury are perfectly safe to inject into babies and children.
Two years ago AS leadership was excited about a Norwegian study on vaccinated children and autism and promised the study designers full support. AS expressed a desire to take the lead as a funder and facilitator of the project. Shih surreptitiously killed almost all involvement.
By Kim Stagliano
We talk a lot about finding the "right" pediatrician who will accommodate our kids' unique (ahem) medical needs. Today I found a great link at Deirdre Imus' website to the "Integrative Pediatrics Council" HERE which provides a list of "green" pediatricians throughout America (and one in Canada.) Turns out I have a green pediatrician less than ten miles from my home. Of course, I'll miss the four flu vaccine posters in my current practice's examination room and I might not need my Sharpie any longer...
While I was at Deirdre's site, I saw that you can view the replay of the webcast HERE from her "Forum on Vaccines" at Hackensack University Medical Center, in October. David Kirby was on the panel.
Managing Editor's Note: Who thinks this list is naughty and who thinks it's nice?
By David Kirby
It’s getting harder to keep up with the list of scientists, doctors, public health officials and government leaders who now believe that a vaccine-autism connection is at the least possible, and should be researched further.
Earlier this week, Dr. Peter Fletcher, former Chief Scientific Officer at the UK Department of Health was added. Now, eight more prominent researchers have joined the group. (See list below – they are the last eight names added).
Invented in the 1920’s by Eli Lilly, thimerosal is 49.6% ethlymercury by weight, a neurotoxin known to be more than a hundreds times more lethal to tissue than lead.
Eli Lilly’s safety testing of the product consists of a 1930 study of 22 patients dieing from mengiococcal meningitis in an Indiana hospital. Patients are injected with the solutions and followed until their death, which is within days. Because the patients die of meningitis, they are declared to show no adverse reaction to thimerosal and the product is declared safe for use. Thimerosal is subsequently introduced for use in vaccines and in over the counter remedies as a preservative to kill bacteria in the product.
Managing Editor's Note: That's Robert Kennedy Jr. at the Green our Vaccines rally last June where he summarized the autism/vaccine debate better than anyone I'd ever heard. Click HERE to watch his speech at the Jenny McCarthy Green Our Vaccines rally. From your mouth to God's ears, J.B..
By J.B. Handley
I didn't weep last night when Barack Obama was elected President, although I voted for him and was certainly thrilled to see him elected for so many reasons.
Truth be told, I was very frustrated by Obama's positions on autism relative to John McCain, and I simply heard many more things and saw a lot more action out of McCain when it came to our kids.
But, I was struck by the decency, intelligence, and compassion of Obama, and I believe he already knows or will soon understand the breadth of what is going on with our kids.
Like I said, I didn't weep when Obama won last night, but I just wept for a rumor now floating around in the blogosphere: Obama is considering RFK Jr. to run the Environmental Protection Agency.
God Bless America. And, let's pray it's true.
J.B. Handley is co-founder of Generation Rescue and contributor to Age of Autism.