"Healing Autism: No Finer a Cause on the Planet" ________________________________________________________________

RESEARCH

* Misdiagnosis May Account For Rise In Autism Cases

* Thimerosal Linked to Autism in Confidential CDC Study

* The Univ. Of Pittsburgh Receives Grant To Study Autism Treatment

* MMR Vaccine Infection Induces IgE Class Switching

* Measles Vaccine In A Spray

Misdiagnosis May Account For Rise In Autism Cases

Editor's note: This news article from the Ventura County Network was a bit too hasty to have drawn the conclusions they have made in this headline. Sources at the MIND Institute point out that the article itself reports that they only found "some" misdiagnosis and that "multiple factors" are at work. The conclusion made here belongs to the reporter, and not the researcher.

Three years after state officials reported an unprecedented increase in the number of California children with autism, researchers have found indications that some of them were wrongly diagnosed with the incurable and serious brain disorder.

Dr. Robert Byrd, principal investigator of a $1 million study on the reasons behind the increase, said that a pilot study based on youngsters in the Stockton and Sacramento areas found some have mental retardation instead. Other children diagnosed as autistic by state assessment teams did not meet the standard set by the American Psychiatric Association, the pilot study found.

Byrd cautioned, however, that the number of children represented in the two Northern California areas was too small to forecast the picture statewide. He said multiple factors will probably account for the increase when the final results come in for the entire state in a few months. Researchers are looking at a variety of possible explanations, including the children's medical conditions.

"I don't believe it will be one thing," Byrd said in a recent interview. "I'm not sure when I'm done I will have explained the entire increase away."

Testing the process

Byrd declined to release any specific numbers at this point, saying the pilot study was done to test the process rather than for scientific validity.

In any case, he said, it's doubtful that the rise was driven by vast numbers of families with autistic children moving to the state. Autism cases grew 15 times faster than the state population from 1987 to 1998, increasing by 273 percent. Over the same period, the California population ticked up 18 percent. The rise has burdened schools with special-education costs and many families are struggling to raise children seriously disabled in thinking, communicating and social interaction.

Misdiagnosis is an issue not just for explaining whether the autism increase is real, but also because it might lead to ineffective treatment and schooling. Educators now know better methods for teaching autistic children than they did in the past, so experts say it's important to identify them correctly and early.

Numbers doubled

Growth in autism cases has continued unabated in recent years as well. The number of autistic people receiving state-paid services from the Department of Developmental Services has more than doubled from 8,000 in mid-1998 to almost 17,000 early this year. The figure more than doubled in Ventura County as well, going from 200 to almost 500 over the same time period.

Public schools, charged with providing most services to autistic children once they reach age 3, are also flooded with new cases. School officials in Ventura County and the neighboring Las Virgenes area saw the enrollments of children with autism grow from a handful in the 1980s to 610 at the end of last year.

Most of them are children under 10, a development that has led to the opening of new classes tailored to their needs and the hiring of aides who work with them on a one-to-one basis in regular classrooms. Many of these children are living in affluent communities -- the Las Virgenes Unified School District had enrolled 83 at the end of last year, Conejo Valley had 79 and Simi Valley 106. In contrast, Ventura Unified, which is almost as large as the Conejo Valley district and bigger than Las Virgenes, had 48.

Wealth could be factor

Autism advocates say there is no evidence the disorder occurs more often among the affluent, but that wealthy areas may get more students because families are moving there to take advantage of their school programs. With the advantages of money and education, they may also be more likely to get their children diagnosed with the disorder, opening the way for services public schools must provide.

Deputy Superintendent Donald Zimring called the financial impact on Las Virgenes "huge." He said the district spent $642,522 last year, most of it for the 24 students who were most severely affected by autism -- a cost of $26,772 per child.

Administrators like Zimring say schools are ill-prepared to shoulder the financial burden, calling on federal and state governments to increase funding. Money, in fact, has been a stumbling block to boosting services in the schools, even as they have opened new classes and added more teacher training.

"Funding hasn't really improved and that's really the crux of it all," said Laura Valdez, mother of two boys with autism and former president of the Ventura County Autism Society. "The intentions were all there."

Most still in elementary school

Valdez said the challenge ahead is developing programs in the junior high and high schools. The first big wave of autistic children is still in elementary school. She predicted that parents will sue unless districts provide adequate programs in the upper grades.

The programs that worked in early grades such as assigning a one-on-one aide often don't wash for adolescents, said Ric Nargie, who oversees special education for the Ventura Unified School District. Students would become social outcasts if they had aides with them constantly, he said, so he hopes to develop some type of buddy system.

As educators grapple with the increase, state officials hope that Byrd's study will explain it. The Legislature commissioned the study after learning of the rise in cases. It far outstripped increases for other disabilities for which the state provides lifetime services, such as cerebral palsy, epilepsy and mental retardation.

The eight investigators doing the research are studying 1,000 children around the state, including several youngsters in Ventura County. Half of the group has been diagnosed with mental retardation and the other half with autism -- conditions at the heart of a debate over whether changing standards of diagnosis have driven the increase.

May have been mislabeled

Some specialists say large numbers of autistic children were mislabeled as mentally retarded in the past, and that the increase simply shows what the true numbers should have been. But others say health professionals may be overcalling autism now because they're concluding that mentally retarded children with autistic-like features -- such as rocking and hand-flapping -- have the full disorder.

Aging shows the truth

Valdez, who teaches a class of autistic children, said the aging process sometimes shows the real truth. Some youngsters have autistic-like behaviors in the early grades but not later, she said.

"I've watched a lot of these kids. As they get older and become more skilled, those things are dropping out. Some have real learning disabilities and other children have emotional problems."

Cathy Cartwright, director of special services in the Pleasant Valley School District, though, doubts that misclassification is driving the increase.

"That theory has not held true in our district," she said. "The youngsters we're seeing today look very different from the kids we were seeing 10 or 15 years ago. There are just more children exhibiting the characteristics of autism. ... I wish somebody could give us an answer."

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* * *

Thimerosal Linked to Autism in Confidential CDC Study

Controversy is mounting regarding the Center for Disease Control's

(CDC) Thimerosal Vaccine Safety Data-Link Study (VSD) presented to the public at the July 15, 2001, Institute of Medicine (IOM) meeting on "Thimerosal-Containing Vaccines and Neurodevelopmental Outcomes." Thimerosal is the mercury preservative used in vaccines and other biologics. The CDC study evaluated nuerodevelopmental injury and cumulative exposures to Thimerosal at one and three months of age by studying the health records of over 100,000 children at four HMOs.

The organization SAFEMINDS (Sensible Action for Ending Mercury-Induced Neurological Disorders) has obtained an earlier, confidential February 2000 version of the VSD study through the Freedom of Information Act, as well as transcripts from a scientific review of this earlier study, which took place at Simpsonwood Retreat Center in Georgia. Serious disparities exist between the neurodevelopmental outcomes of the two different versions of the study. For over a year, SAFEMINDS and Congressman Dan Burton (R-Indiana) have been requesting the VSD raw data from the CDC for independent review. So far their requests have been denied.

The Texas firm Waters and Kraus leads the consortium of 25 law firms in as many states in the first civil suit brought against vaccine manufacturers and alleges that the February 2000 confidential version of the VSD study clearly demonstrates "an exposure to more than 62.5 micrograms of mercury within the first three months of life significantly increases a child's risk of developing nuerodevelopmental orders such as speech and language delay, autism, stuttering, and attention deficit disorder." In fact, the study indicates that children at this exposure level are more than twice as likely (2.48) to develop autism as those not exposed. Waters and Kraus note: "Courts of law have generally upheld that a relative risk of 2.0 or higher is sufficient to substantiate that a given exposure causes disease.

When the VSD study was presented at the July 2001 IOM meeting, the relative risk of autism had been reduced to 1.69. According to Mark Blaxill of SAFEMINDS, all previous versions of the study had used the same dataset. Yet for the version presented at the IOM meeting had an additional 34,334 children added to the database. The majority of the additional children were added by altering the inclusion criteria, as well as by updating the HMO data cycle by adding an additional year, 1998. The additional children were too young to have been diagnosed autistic since they were just turning two at the time the analysis was performed. Autism is diagnosed on the average at 44 months.

When the author of the VSD study, Tom Verstraeten, first presented the confidential version for scientific review by a panel of experts at Simpsonwood in June 2000, he said, "One thing that is for sure, there is certainly an under-ascertainment of all these [neurodevelopmental disorders] because some of the children are just not old enough to be diagnosed. So the crude incidence rates are probably much lower than what you would expect because the cohort is still very young."

The FDA and EPA called for the removal of mercury in infant vaccines beginning in 1999. At that time, vaccine manufacturers agreed to have thimerosal-free vaccines available at the beginning of 2001 and later offered voluntary exchange for all remaining thimerosal vaccines still on the shelf. In July of 1999, the American Academy of Pediatrics (AAP), under the leadership of pediatric vaccinologist Dr. Neal A. Halsey, met with officials from the CDC to ask that the birth dose of Hepatitis B be pushed back as far as six months of age. The CDC and members of its National Immunization Program (NIP) refused, arguing that there was no evidence of harm done. They didn't want to undermine public confidence in the vaccination program. After much negotiation, the CDC released an ambiguous and weak statement that suggested that in certain low-risk populations physicians could wait until babies were two months of age before they administered their first hepatitis B vaccine.

The Advisory Committee on Immunization Practices (ACIP), the CDC committee that recommends the vaccines for the Childhood Immunization Schedule, has yet to state a preference for thimerosal-free vaccines. It was the ACIP that approved of the additions to the Childhood Immunization Schedule of hepatitis B and Hib in the late 1980s and early 1990s, two thimerosal-containing vaccines that pushed infant ethyl mercury exposure levels far above any existing federal methyl mercury exposure guidelines.

At the June 200o Simpsonwood meeting, the following comment was made by a participant, "This association leads me to favor a recommendation that infants up to two years old not be immunized with thimerosal-containing vaccines if suitable alternative preparations are available… Forgive this personal comment, but I got called out at eight o'clock for an emergency phone call, and my daughter-in-law delivered a son by C-section. [This is] our first male in the line of the next generation, and I do not want that grandson to get a thimerosal-containing vaccine until we know better what is going on…"

SAFEMINDS, a group founded by parents of children suffering from what they know to be mercury-induced neurological disorders, believes that everybody's child should have had this knowledge and option in June of 2000.

Just how much thimerosal is too much for an infant? It depends on whom you ask. Chair of the IOM's Immunization Safety Review Committee, Dr. Marie McCormick, gave assurances to the public last October that it would be rare for any child who follows the vaccine schedule to exceed federal guidelines for methyl mercury exposure. Yet the confidential CDC study found that "the majority of children in their cohort exceeded the EPA limits at one and three months of age." The EPA guidelines allow for 0.1 mcg per kilogram of body weight per day. Depending on her weight, a three-month-old infant who received 62.5 micrograms of mercury in one day would exceed the EPA guidelines upwards of 78 times. And, as researchers were quick to point out at the latest IOM meeting on thimerosal, the EPA's safe limit is based on gradually ingested methyl mercury via fish consumption. It was never meant to be used as a safety limit for injected bolus doses of ethyl mercury, which permeate the blood-brain barrier.

According to Dr. Boyd Haley, head of the chemistry department at the University of Kentucky, and an internationally recognized researcher on the toxicity of mercury compounds, says no amount of thimerosal is a safe amount. He says, "It is well known that infants do not produce significant levels of bile or have adult renal capacity for several months after birth. Bilary transport is the major biochemical route by which mercury is removed from the body, and infants cannot do this very well." Haley adds that thimerosal is more toxic than mercury and that "giving a ten-pound infant a single vaccine in a day is the equivalent of giving a 100 pound adult 40 vaccines in a day." He goes on to say, "We are not talking about causing death; we are talking about causing autism. As a scientist, you have to ask yourself, what's the most obvious neurotoxin that these children are being exposed to that could cause this? Thimerosal."

According to a participant at the scientific review of the confidential CDC study held at Simpsonwood, "The number of dose- related relationships are linear and statistically significant. You can play with the numbers all you want. They are linear. The increased incidence of neurobehavioral problems in the past few decades is probably real. I work in the school system where my effort is entirely special education, and I have to say that the numbers of kids getting help in special education is growing nationally and state by state at a rate we have not seen before…we don't see that kind of genetic change in 30 years."

It is now estimated that 17 percent of US children under the age of 18 are suffering from learning and/or behavioral disabilities. California's Department of Developmental Services just released it sobering statistics for 2001. It reported a 20 percent increase over the previous year 2000 for diagnoses of level-one autism. Level-one autism is the number one disability in the state of California, accounting for 35 percent of all new cases. Of the 16,802 persons with level-one autism in the California system, two-thirds of them are between the ages of birth and 13.

How could a mistake of such magnitude have been made---one that has seemingly impacted a generation of children around the world? The FDA approves vaccines in a vacuum; they are not required to study cumulative exposures or the synergistic effects of receiving multiple vaccines in a single day. After the FDA approves a vaccine, it is reviewed for inclusion on the CDC's Advisory Committee on Immunization Practices (ACIP) vaccine schedule. In reviewing policy decisions that brought about the approval of the ill-fated rotavirus vaccine, Congressman Dan Burton found that the ACIP is riddled with conflicts of interest: committee members own stock in drug companies that make vaccines; committee members own patents for vaccines; conflicts of interest waivers are granted for members for a year at a time, and there are no public members or parents who have a vote in the same committee.

Executive Director of the American Association of Physicians and Surgeons Jane Orient, MD, has long argued that because vaccines are state and federally mandated, the manufacturer and the physician are relieved of liability for adverse effects. On the other hand, physicians who advise against a mandated vaccine face increased legal liability if a patient is infected with that disease. Neither vaccine manufacturers nor medical personnel have any impetus to follow up on the safety or rationale of the product they are administering.

It has been almost three years since Lynn Redwood, a nurse, mother of an autistic son, and one of the founders and current president of SAFEMINDS, first came across an FDA report mentioning that children who received vaccines within thimerosal might possibly exceed federal guidelines for mercury exposure. She went on to have a lock of her son's hair tested, and it revealed levels of mercury and aluminum at almost five times the acceptable amount. Redwood says, "I want parents to know what happened to their children, and I am starting to lose faith that our government and its various agencies are doing anything about this."

* * *

The Univ. Of Pittsburgh Receives Grant To Study Autism Treatment

Researchers at the University of Pittsburgh School of Medicine have received a grant to study a medication that may be useful in treating cognitive deficits in children with autism.

Autism Spectrum Disorders (ASD) affect about one in 1,000 individuals and is characterized by deficits in social interaction, impaired communication and repetitive and stereotyped patterns of behavior, interests and activities.

The research team headed by Benjamin L. Handen, Ph.D., associate professor of psychiatry and pediatrics and program director of the John Merck Child Outpatient Program at Western Psychiatric Institute and Clinic hopes to find out if the drug donepezil HCL will enhance cognitive functioning in children with ASD. The drug has been effective in treating other illnesses that cause cognitive problems, such as Alzheimer’s disease and attention-deficit hyperactivity disorder.

A recent open-label study of the safety and effectiveness of donepezil HCL in 25 boys with ASD found significantly increased speech production and a statistical trend toward improvement in core symptoms of the disorder.

Dr. Handen and his colleagues will recruit 40 children and adolescents with ASD during the next three years to participate in a 10-week double blind, placebo-controlled study of donepezil HCL. The study will help to determine if the drug is effective in providing enhanced cognitive functioning and also will examine side effects.

For more information, please call (412) 383-2190. All calls are confidential.

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MMR Vaccine Infection Induces IgE Class Switching

"Infection of Human B Lymphocytes with MMR Vaccine Induces IgE Class Switching"

Clinical Immunology

Vol. 100, No. 3, September, pp. 355-361, 2001

Farhad Imani and Kelly E. Kehoe

Division of Clinical Immunology, Department of Medicine, The John Hopkins University School of Medicine, Asthma and Allerrgy Center, 5501 Hopkins Bayview Circle, Baltimore, Maryland 21224 Correspondence should be addressed. E-mail: fimani@mail.jhmi.edu

Circulating immunoglobulin E (IgE) is one of the characteristics of human allergic diseases including allergic asthma. We recently showed that infection of human B cells with rhinovirus or measles virus could lead to the initial steps of IgE class switching. Since many viral vaccines are live viruses, we speculated that live virus vaccines may also induce IgE class switching in human B cells.

To examine this possibility, we selected the commonly used live attenuated measles mumps rubella (MMR) vaccine. Here, we show that infection of a human IgM+ B cell line with MMR resulted in the expression of germline e transcript. In addition, infection of freshly prepared human PBLs with this vaccine resulted in the expression of mature IgE mRNA transcript. Our data suggest that a potential side effect of vaccination with live attentuated viruses may be an increase in the expression of IgE.

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* * *

Measles Vaccine In A Spray

The spray could remove the need for needles

"It engenders a type of immunity, of protection,

that is more favourable"

-Professor Joseph Ballantine, Georgetown University

Scientists have developed a measles vaccine that is administered via an aerosol spray rather than a needle.

Supporters believe the spray will be quicker, easier and more effective than the traditional jab, with fewer side effects.

It would also mean children would have a pain-free way of receiving the vaccine.

Children would be given the vaccine by breathing through a mask for just 30 seconds.

Experts who developed the spray used it to give a combined measles and rubella vaccine to over 2,000 children.

Better protection

Researchers in South Africa have also successfully tested a measles vaccine in an spray. It was found it was more effective at preventing the disease than the traditional jab.

The team from Mexico have not yet had the spray approved by regulatory bodies.

But they are to present their findings to the World Health Organization this month.

Even if the work is approved, it could be three years before the spray is widely available.

Professor Joseph Ballantine, director of the International Immunology Centre at Georgetown University in Washington, USA told BBC Radio 4's Today programme aerosol vaccines had many merits.

"It's much easier to administer. And it is the natural route by which measles virus is contracted and spread.

"It avoids the need of a needle and syringe. And, perhaps most importantly, it engenders a type of immunity, of protection, that is more favourable."

Professor Ballantine believes the aerosol would offer better protection because it would exercises the mucosal immune system in the nose and throat, rather than the systemic immune system in the blood and muscles that an injection stimulates.

This is important because measles is transmitted through the nose and throat.

Professor Ballantine also hopes vaccines for other diseases such as flu and mumps could also be given via an aerosol spray.

Natural route

Dr Andrew Wakefield, whose controversial research has linked the combined measles, mumps and rubella vaccine to autism and bowel disease also backed the spray.

He said it could be safer: "This would alleviate many of our fears, provided that the appropriate safety studies were conducted, because you are taking one of the variables out of the equation in giving it by the natural route of exposure."

The Department of Health told the BBC it could not comment on unpublished research, and restated its support for MMR vaccine.

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Reader's Posts

Moving back to LA this summer and have a pre-scooler with autism. We are looking for any advice about the following school systems, LAUSD, Glendale, Pasadena or La Canada. pmguyer@yahoo.com.

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Full Time Technician: Several postiions available immediately. Positions may involve center-based, home-based, inclusion K/presch. Prefer previous experience in ABA or floor time. Ongoing training and supervision provided. Great benefit package including tuition reimbursement, health insurance, etc. Salary commensurate with experience. More info: 508-841-8667 or e-mail eballard@shrewsbury.k12.ma.us. Resume to : Mr. Thomas Kennedy, Dir. of Human Resources, Shrewsbury Public Schools, 100 Maple Avenue, Shrewsbury, MA 01545

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I'm an early intervention service provider with the state of nevada looking for resources for a family who lives in rural Hawthorne Nevada. They have a son who is turning 3 shortly going into the local school district for services. The family is interested in training for them and possibly the school. Maureen Delongis [MEDELONG@dcfs.state.nv.us]

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I'm the parent of a boy with autism whose grandmother is willing to circulate a letter of support. Any ideas about where a generic letter which she can use as a starting point can be found? I think all of your readers should start writing their congressmen/women now, as it may take a few calls and letters to make the point Valerie Montague [nyullm@pacbell.net]

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Looking for info on good special ed school districts in Nassau County, NY. Looking preferably for school that have a good ABA program at the CSE level. Thanks Doree doreeng@nyc.rr.com

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Zach has autism.mild to moderate was his diagnosis. My question is did any one find out what would cause their child to cry, slap their head and ears and, look to be in pain, then have the behaviour disappear in ten to fifeen minutes? it comes from out of the blue at least once a day, and is very heartbreaking to watch. CAT scans were done dental work checked everything is ok, it is sooo frighening, and causes problems at school. Any one have this happening to their child? please help!

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Zach has autism.mild to moderate was his diagnosis.my question is did Any one find out what would cause their child to cry, slap their head And ears and, look to be in pain, then have the behaviour disappear in Ten to fifeen minutes? It comes from out of the blue at least once a Day, and is very heartbreaking to watch. Cat scans were done dental work checked everything is ok, it is sooo frighening, and causes problems at School. Any one have this happening to their child? Please help! mommom55@webtv.net

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I am looking for any information or research that has been done on social therapy dogs with autistic children. Please email me at suzanfine@aol.com.

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