SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

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December 10, 2002 Promote Your Event - Free! - Send a CALENDAR LISTING:

** MEDIA ALERT: **

The deadly dangers of the smallpox vaccine. Dan Rather reports.

(CBS) Wednesday: Dec. 11, 8 p.m. ET/PT , 60 Minutes II

* AND TODAY *

Full Committee Hearing on "Vaccines and the Autism Epidemic: Reviewing the Federal Government's Track Record and Charting a Course For the Future" Live on line at Tuesday, December 10

AWARENESS

* When Autism Strikes in New York

* Vaccines, Autism Epidemic & the Fed. Govt's Track Record: Hearing Today

RESEARCH

* At Genetic Frontier, the House Mouse Serves Humanity

[Abstracts]

* Repetitive Behaviors In Autistic Disorder

* Evaluation of Neuromotor Deficits In Children With Autism

* Creatine Depletion In A New Case with AGAT Deficiency

* Chromosomal Fragility In A Behavioral Disorder

PUBLIC HEALTH

* Irish Health Authority Warns Of Possible Measles Outbreak

ADVOCACY

* New UK Group Offers Advice, Advocacy On Autism

COMMENTARIES

* Eli Lilly Gets Miracle Cure For Liability

* The Truth About Thimerosal: Wall Street Journa

LETTERS

* Changing The Way The Federal Gov't Grant Agencies View Autism?

* A Gracious Thank You

AWARENESS

When Autism Strikes in New York

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Croton-On-Hudson - Waving purple socks and a fleece jacket, Astrid Vaughan tried to capture the attention of her drenched daughter, who refused to stop bouncing on her trampoline, despite the pelting rain.

"Kee-Kee, sweetie, how about putting on your socks?" she pleaded, standing in a chilly downpour in front of their split-level home in Croton-on-Hudson. "Would you like your jacket?"

"Wah, he, he!" Kristie squealed, flipping a full 360 degrees, landing on her bare feet, then flying high again.

Mrs. Vaughan long ago gave up trying to limit Kristie's bounces to appropriate weather. Kristie, who is 12, has severe autism, a neurological disorder that encases her in an invisible shell, choking her off from normal communication and interaction. For a decade, she started the day when she felt like it, often at 3 or 4 in the morning, breaking out of the house and onto her beloved trampoline. Like many families with autistic children, the Vaughans installed locks on the insides of their doors, hiding the keys from Kristie. But she escaped by removing - or cutting holes through - the window screens. When stuck inside she bounced on the beds until the beds broke, the box-spring coils collapsed.

Kristie's behavior was erratic. At one moment, Mrs. Vaughan said, she was her sweetheart exuding unconditional love. At another, she would bolt naked from the house and plunge into the neighbor's swimming pool. Her speech was limited to rote responses, interspersed with unintelligible noises. As she grew older, she began to wander, disappearing into the woods, down faraway streets and along crowded mall corridors.

"She has no inhibitions, does what she feels like doing," Mrs. Vaughan said, her calm voice a contrast to her words.

When Mrs. Vaughan first learned of Kristie's diagnosis in 1992, autism was considered a rare disorder. But, during the last 10 years, the percentage of New York State preschoolers with a diagnosis of autism has quadrupled, from one in 2,000 children to one in 500, according to a statewide study by the New York Autism Network.

Doctors cannot completely account for this escalation, nor do they know autism's causes or cures, leaving parents like Mrs. Vaughan and her husband, Mark, a telecommunications salesman, experimenting with unproved treatments and blaming everything from the environment to themselves for their child's disability.

"When a child is diagnosed with autism, it's not the child that is diagnosed, it's the entire family," said Dr. Andrew Baumann, a psychologist and chairman of the New York Families for Autistic Children, a Long Island-based group, and father of an 8-year-old autistic son. "It changes dynamics in a whole strange way, placing a huge strain on the mother and father. There's guilt, fear, shame, anger. Everyone wants to blame someone."

Exhausted, seeing no medical remedy on the horizon and frightened for Kristie, and by the impact of her behavior on their two other children, Julia and Kurt, the Vaughans made an agonizing decision. In late July, they placed Kristie in the New England Center for Children in Southboro, Mass., a year-round residential school, the best they could find, nearly three hours from home. As is true with many families grappling with autism, a cluster of complicated factors shaped the choice, and has left Mrs. Vaughan with a swirl of feelings, part guilt, part apprehension, part hope.

"Could you imagine how you'd feel if your daughter wasn't going to be sleeping at home every night?" Mrs. Vaughan asked. "But I know it's for the best. I know it's best for her and Julia."

When Kristie was home, Kurt, 14, preoccupied with girls and his guitar, was rarely there. He saw his sisters in the car when his mother took him and his friends to games and get-togethers.

+ Article continues:

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SPECIAL EVENT

Vaccines, Autism Epidemic & the Federal Govt's Track Record: Hearing Today

Full committee hearing on, "Vaccines and the Autism Epidemic: Reviewing the Federal Government's Track Record and Charting a Course for the Future."

_______________________________________________________

>> DO SOMETHING ABOUT AUTISM NOW <<

Subscribe, Read, then Forward the Schafer Autism Report.

No Cost!

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* * *

RESEARCH

At Genetic Frontier, the House Mouse Serves Humanity

Now that the mouse's genome has been decoded, revealing just as many genes as its host, the 25 million mice that work in laboratories throughout the world may be demanding a lot more respect. It is the close cousinship that makes this vast labor force of furry little human surrogates so useful for exploring the human genome.

Many of the ills that humans inherit occur or can be generated in mice, making them models for studying how disease works in people. There are obese mice, mice with heart problems and even mice being developed as models for psychiatric diseases like autism and schizophrenia.

Because so much biomedical research is undertaken in mice, many laboratories now have to incur the large extra costs of operating mouse colonies. Nothing can so much incite a colleague's displeasure as sending a mouse with some pox that decimates the guest mouse colony. So mice, neatly stacked in wire baskets, are kept in germ-free high-containment rooms where they are fed and pampered and kept scrupulously free of mouse and human germs.

The disputes over human embryonic stem cells that perplexed the Clinton and Bush administrations emerged from a technique developed in mice, which are still the test bed for most basic work on stem cells. Last month, a group of scientists met at the New York Academy of Sciences to discuss whether human embryonic stem cells should be tested by seeing how well they performed in a mouse embryo.

While the researchers' idea was to let the embryos live only transiently, no one knows what kind of creature might result from a mixture of mouse and human embryonic stem cells. A mouse with all its brain cells of human origin is an interesting concept, though it might disappoint in practice. And though made by a different method, a mouse already exists that has a human immune system in place of its own.

In exchange for free board and lodging and excellent medical care, the mice have to submit to a number of genetic indignities. Some strains, called knockout mice, have had a specific gene removed, allowing researchers to figure out what the gene is meant to do by observing the knockout's flaws.

Some mice are so inbred, a result of many generations of brother-sister mating, that they carry the same versions of each gene from both parents. There are mutant mice descended from parents who were obliged to eat a chemical that interferes with their DNA, creating random mutations in the genes of the mouse's eggs or sperm.

The mecca of the mouse world is the Jackson Laboratory in Bar Harbor, Me. The laboratory maintains breeding colonies of many mutant mice strains and can generate rarer strains from a library of frozen embryos.

"We are about making sure the biomedical community has a broad assortment of mutant alleles," said the lab director, Dr. Richard Woychik, referring to the variant forms of a gene.

Just as biologists who study the Drosophila fruit fly call themselves fly people, researchers with a special interest in the mouse for its own sake are known as mouse people. A wider circle of biologists plunge from time to time into the mouse world in pursuit of their own projects.

The Mouse Genome Sequencing Consortium undertook the multimillion dollar task of decoding the 2,500 million units of DNA in the mouse genome. The Fantom Consortium, standing for Functional Annotation of the Mouse, has captured and decoded all the 61,000 transcripts of the mouse genome — essentially the products of activated genes — that are made by all the different kinds of cells in a mouse.

There is also a Complex Traits Consortium, whose aim is to find the genetic roots of the many important diseases that are caused by several genes acting in concert. That goal has long eluded human geneticists, and the consortium hopes to achieve the feat in the mouse.

A major ambition of mouse people is to twist up the mouse in every conceivable way by creating a comprehensive collection of mice strains, each one of which has a different gene mutated or disabled. That will provide the basis for a researcher to study any mouse gene of choice through its absence in the mutated strain. So far, only 5,000 genes have been mutated, and the International Mouse Mutagenesis Consortium aims to generate strains with mutations in the remaining 25,000.

That is also the goal of a company, Lexicon Genetics of the Woodlands, Tex., just north of Houston. "We have coverage of 59 percent of the genes in stem cells," said the chief executive, Dr. Arthur Sands.

Lexicon Genetics has a technique to disrupt genes in embryonic stem cells, which can then be grown into full mice. The mice are given an "executive physical," Dr. Sands said, an exhaustive examination to see what defects are caused by whichever gene they are missing.

The mice can be used to test drugs before they are invented, Dr. Sands says. That is because most drugs aim at enzymes or receptors, which are products of genes, and a mouse in which that gene has been eliminated mimics the effects of any drug that singles out the gene's product.

Mice are not obviously people's equal in terms of intellect, but scientists have found ingenious ways to make mice serve as models for psychiatric diseases. Lexicon has a knockout mouse that lacks the brain cell receptor that Prozac focuses on and that has the predicted behavioral effects.

At the Jackson Laboratory, Dr. Wayne Frankel is looking for mice that do not become used to the same stimulus, an anomaly that may underlie schizophrenia. "The approach is not necessarily to find a mouse that's depressed or autistic, but to understand aspects of the disorder," Dr. Frankel said.

The laboratory mouse is something of an international creation, owing its heritage to mouse fanciers in China, Japan, Europe and the United States. There are four subspecies of wild house mouse, of which the two most prominent are Mus musculus, which evolved in Western Europe, and Mus domesticus, which came from Eastern Europe.

Mus domesticus colonized much of the world outside Europe, including the Americas, Africa and Australia. By the 1700's, mouse fanciers in Japan and China had domesticated many varieties of mice, mostly from musculus and domesticus, and Europeans later imported them, according to an article last week in Nature by the Mouse Genome Sequencing Consortium.

When Harvard biologists in the early 1900's needed mice to test Mendel's newly discovered laws, they bought mouse strains from Abbie Lathrop, a retired school teacher who bred fancy mice on her farm in Granby, Mass. Mice from her farm were developed into the common laboratory strains known as DBA and C57BL.

Harvard's Clarence Little, who bred C57BL, was given money by Edsel Ford and Roscoe Jackson, head of the Hudson Motor Car Company, to set up the Jackson Laboratory. It is C57BL whose genome is being decoded by the consortium.

House mice are often called commensals because they live in houses and barns almost as guests, albeit uninvited ones, at the same table. But some consider that description is too kind.

"Rather than being commensals," Dr. Dustin Penn of the University of Utah writes sternly in his "House Mouse Primer," "house mice are usually kleptoparasites, as they have been stealing our food stores since the agricultural revolution."

Maybe. But in sharing their genome and serving diligently as guinea pigs in genetic tests, mice are well into repayment of their long-term debt.

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ABSTRACTS

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Militerni R, Bravaccio C, Falco C, Fico C, Palermo MT.

The Department of Child Neuropsychiatry, II University of Naples, Naples, Italy.

INTRODUCTION: Repetitive behaviors are common in autistic disorder, as in other developmental disabilities.

Behaviors as diverse as stereotypies, cognitive inflexibility, and a need for sameness are grouped together under DSM IV classification, even though they are diverse in phenomenology, underlying neural circuitry, and possible clinical significance.

In order to better define repetitive behaviors, we studied the relationship between such behaviors and chronological age, developmental level, estimated IQ, presumed mood state, severity of illness, as well as behavior reactivity to environmental stimuli, in a group of 121 consecutive autistic children, aged 2-4 and 7-11 years.

RESULTS: Younger autistic children displayed more motor and sensory repetitive behaviors.

Older children had more complex behaviors.

Children with higher IQ scores, likewise, demonstrated more complex repetitive behaviors.

Most motor behaviors and self injury showed features of reactivity.

CONCLUSIONS: Certain "repetitive" activities may not represent core features of autistic disorder and may be equivalent to normal motor and cognitive behaviors, as seen during typical development.

PMID: 12469238 [PubMed - in process]

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Creatine Depletion In A New Case with AGAT Deficiency

Clinical and genetic study in a large pedigree.

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Battini R, Leuzzi V, Carducci C, Tosetti M, Bianchi MC, Item CB, Stockler-Ipsiroglu S, Cioni G. Division of Child Neurology and Psychiatry, IRCCS Stella Maris and University of Pisa, Via dei Giacinti 2, 56018, Calambrone Pisa, Italy

Arginine: glycine amidinotransferase (AGAT, EC 2.1.4.1) deficiency is a recently recognized autosomal recessive inborn error of creatine biosynthesis, characterized by mental retardation and severe language impairment.

We extensively investigated a third 5-year-old patient with AGAT deficiency, discovered in the pedigree of the same Italian family as the two index cases.

At the age of 2 years he presented with psychomotor and language delay, and autistic-like behavior.

Brain MRI was normal, but brain 1H-MRS disclosed brain creatine depletion, which almost completely normalized following creatine monohydrate supplementation.

A remarkable clinical improvement paralleled the restoration of brain creatine concentration.

AGAT and GAMT (guanidinoacetate:methyltransferase) genes were analyzed in the proband and in 26 relatives, including the two cousins with AGAT deficiency.

Sequencing of the proband's AGAT gene disclosed the same homozygous mutation at nt position 9093 converting a tryptophan (TGG) to a stop codon

(TAG) at residue 149 (W149X), as already described in the two previously reported cases.

The proband's parents and 10 additional subjects of the pedigree were carriers for this mutation.

AGAT deficiency was further confirmed by undetectable AGAT activity in the patient's lymphoblasts.

Mutation analysis of the GAMT gene revealed a sequence variation in exon 6 (T209M), not in the proband, but in 15 additional subjects from the pedigree.

The silent nature of this sequence variation is supported by its homozygosity in one AGAT deficient cousin and in one asymptomatic adult, both with normal GAMT activity.

PMID: 12468279 [PubMed - in process]

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Evaluation of Neuromotor Deficits In Children With Autism

And children with a specific speech and language disorder.

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Noterdaeme M, Mildenberger K, Minow F, Amorosa H. Heckscher Klinik, Aussenstelle Munchen-Solln, Wolfratshauser Strasse 350, 81479 Munchen, Germany. michele.noterdaeme@lrz.uni-muenchen.de

Several studies have described problems in motor functions in children with autism and children with a specific speech and language disorder.

The purpose of this study was to identify neuromotor deficits in these neurodevelopmentally impaired children.

A standardised neurological examination was performed in 11 children with childhood autism, 11 children with an expressive language disorder, 11 children with a receptive language disorder and 11 control children.

The children were matched for age and non-verbal IQ, not for gender.

All children had a non-verbal IQ above 85.

The neurological examination procedure allowed for a qualitative and quantitative assessment of five specific neurological subsystems: fine and gross motor functions, balance, coordination and oral motor functions.

The high-functioning children with autism and the children with a specific language disorder (expressive or receptive) had more motor problems than the control children on most neurological subsystems.

There were few statistically significant differences between the three groups of developmentally impaired children.

The frequent co-occurrence of verbal and non-verbal, in particular neuromotor, deficits in developmentally impaired children put an additional burden on the development of these children and should be diagnosed as early as possible.

PMID: 12469239 [PubMed - in process]

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Chromosomal Fragility In A Behavioral Disorder

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Arrieta I, Nunez T, Martinez B, Perez A, Telez M, Criado B, Gainza I, Lostao CM.

Department of Animal Biology and Genetics, Faculty of Sciences, University of Basque Country, Apdo. 644, 48080 Bilbao, Spain. ggparsai@lg.ehu.es

Numerous studies have shown there is consistent evidence implicating genetic factors in the etiology of autism.

In some cases chromosomal abnormalities have been identified.

One type of these abnormalities is gaps and breaks nonrandomly located in chromosomes, denominated fragile sites (FS).

We cytogenetically analyzed a group of autistic individuals and a normal population, and we examined the FS found in both samples with the aim of (1) comparing their FS expression, (2) ascertaining whether any FS could be associated with our autistic sample, and (3) examining if there are differences between individual and pooled-data analyses.

Different statistical methods were used to analyse the FS of pooled and individual data.

Our results show that there are statistically significant differences in the spontaneous expression of breakages between patients and controls, with a minimal sex difference.

Using the method for pooled data, eight autosomal FS have preferential expression in patients and five patients were found to be positive at FS Xq27.3.

With the method per-individual analysis, four FS emerged as specific in our autistic sample.

Inferences of FS from pooled data were different from those of individual data.

The findings suggest that although analysis of pooled data is necessitated by the problem of sparse data, analysis of single individuals is essential to know the significance of FS in autism.

PMID: 12467338 [PubMed - in process]

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PUBLIC HEALTH

Irish Health Authority Warns Of Possible Measles Outbreak

The Eastern Regional Health Authority has warned of a possible measles outbreak in the greater Dublin area.

The ERHA said it has been told of 10 cases in the last week - well above normal patterns.

During a measles outbreak in March 2000, more than 1,000 children contracted the disease and three died.

The ERHA has advised parents to ensure that all children over one year old have received the controversial MMR vaccine, despite fears that it may be linked with autism.

MMR uptake in the eastern region is less than 70%, increasing the danger of an outbreak.

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ADVOCACY

New UK Group Offers Advice, Advocacy On Autism

[Bath is in southern England, between the cities Bristol and London. All autism advocacy groups that use "FEAT" in their name are separate local grass-roots entities, independent of one another. Because of the continued difficulties in getting Applied Behavioral treatment programs for their young children, FEAT groups tend to be more politically focused, and when necessary adversarial, than their more traditional societal counterparts, who are more informational/educational and nationally oriented. –LS.]

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Families with young autistic children are pooling their resources to make the most of the care on offer.

Fraser and Fenella Bradshaw, from Freshford, along with other members of the newly launched group Bath Families for Effective Autism Treatment (BATH-FEAT), claim it is difficult to get information about treatments for pre-school aged children when they are diagnosed with the condition.

The local education authority has structured methods for developing the behavioural, educational and social needs of autistic youngsters, which become available once they start school.

But the BATH-FEAT members argue that not enough focus is put on children who are diagnosed before they start school, even though early treatment can make a vast difference to later development.

The aim of the group is to bridge that gap and the Bradshaws, whose four-year-old son Harry has autism, feel that it is particularly important to act while children are young.

Mrs Bradshaw said: "BATH-FEAT is going to be great for finding out about so many different things you can do to help your autistic child. You need to grab one by the throat and hope it is the one for you because early intervention is the best thing you can do.

"Consultants are good at diagnosing but not at helping you deal with it afterwards.

"The problem is resources, which is something BATH-FEAT could help with. It will be a central body in Bath for when you find out your son or daughter is autistic, and a resource for local information on health."

The group of parents, who live in and around Bath, have all been impressed by an American model that encourages home-based treatment programmes for young children.

Similar groups in the USA advocate the use of private tutors who come into the home and work one-to-one with autistic toddlers.

One of the driving forces behind BATH-FEAT is Scott Sandford, a Canadian who lived in London for more than five years before moving to Bath in February.

The move coincided with his twoyear-old son's diagnosis with autism, and he said he found it hard to find the treatment he needed straight away.

So the 37-year-old photographer instigated BATH-FEAT in order to provide a communal point for other parents in a similar position.

"The group is intended to act in addition to what is already there from the local authority, " he said.

"But parents can get support for setting up their own home programmes and beginning early treatment.

"There are already a number of families doing this in Bath, but they can be in isolation, so we need to develop resources that can be shared communally.

"And hopefully it can become part of the rest of the system as well."

Mr Sandford now spends most of his time at home with his son and up to five tutors who work with his son each day.

He has one other 15 monthold son who is showing no signs of autism.

Anyone wanting to find out more about BATH-FEAT can contact Scott on 330059 or look at the website www. bathfeat. org. uk.

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* * *

COMMENTARIES

Eli Lilly Gets Miracle Cure For Liability

Quick, somebody call Sherlock Holmes. Or at least the Hardy Boys. There's a Washington mystery that needs solving. Everyone in D.C., it seems, is utterly baffled as to how an ugly little provision shielding pharmaceutical behemoth Eli Lilly from billions in lawsuits filed by the parents of autistic children made its way, in the 12th hour, into the Homeland Security Bill "It's a mystery to us," shrugged Eli Lilly spokesman Rob Smith.

It's a mystery to us, too, echoed spokesmen for the White House, the Department of Health and Human Services, and physician~turned~senator- turned-drugcompany-shill Bill Frist, who had originally penned the Lilly-friendly provision for a different bill.

The haphazard lawmaking also proved baffling for pharmaceutical industry lobbyists, and for White House budget director Mitch Daniels, a former Lilly executive, who made a very public show of disavowing any knowledge of the amendment's mystifying genesis.

The outrageous rider protects Lilly from suits filed by the families of autistic children who believe that their kid's condition is linked to Thimerosal, a mercury-based preservative made by Lilly that used to be a common ingredient in childhood vaccines.

But in a town where knowledge is power, there has been a sudden outbreak of people playing dumb. Official Washington is observing a code of omerta that makes the Sopranos look like the loose-lipped gals on "The View." In other words: Nobody's seen nothing.

Here are the clues we have to work with: Over the Veteran's Day weekend, GOP negotiators from the House and Senate hunkered down to finalize the details of the elephantine security bill. At some point - no one is willing to say when - someone - no one is willing to say who - inserted the Lilly provision - though no one is willing to say why.

It's vital that we solve the mystery because this kind of behind-closed doors monkey business is an affront to the very democracy this bill was theoretically designed to protect. Perhaps it should have been called "The Homeland Lilly Protection Act."

“The abuse of a bill about homeland security is especially distasteful."

"The ability," says Rep. Dennis Kucinich (D-Ohio), "of special interest group to secretly insert provisions into law for its own narrow benefit and to the detriment of the public interest raises fundamental questions about the integrity of our government."Kunivich has vowed to lead a challenge to congressional rules that permit our representatives to do the bidding of their deep-pocket donors away from the prying eyes of the public. At the most crucial part of the bill-drafting process -- when the language of the law is being finalized -- Washington's corporate alchemists work their black magic to turn legislative gold into self - serving lead.

"It's a defect in the system," explains Kucinich "It transforms the legislature into a secret cabal."

So this fight is about a lot more than pushing for the repeal of the Lilly provision, something Sens. Debbie Stabenow (D- Mich.) and John McCain (R - Ariz.) have promised to do when the 108th Congress convenes in January. It’s about putting an end to the gaming of the system that is turning legislative process into a prize - a - minute carnival for special interests.

This is clearly not a left - right issue. Any politician who has waxed lyrical about "accountability“ and “transparency“ -- that includes you Mr. President -- owes it to the public to demand that Congress get to the bottom of whose directive it was to insert into the Homeland Security Bill a provision that has nothing to do with homeland security. And to find out whether the $1.6 million that Lilly contributed in the last election cycle -- 79 percent of which went to Republicans -- had any thing to do with it. And, come to think of it, whether these donations had anything to do with it. And, come to think of it, whether these donations had anything to do with the Bush administration last week asking a federal claims court to block access to documents unearthed in over a thousand Thimerosal - related lawsuits.

We’re used to having pounds of fatty pork stirred into almost every recipe Congress dishes up.

But the abuse of a bill about homeland security is especially distasteful. Washington’s greedy corporate masters may finally have overreached. Their continued influence constitutes a clear and present danger to our security, and if the President is serious about protecting the homeland, he should speak up.

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The Truth About Thimerosal: Wall Street Journal

Was it nefarious Dick Armey? Dastardly Senator and Dr. Bill Frist? Or maybe a phantom pediatrician, hired by Eli Lilly to haunt the halls of Congress? From the press coverage, you'd think there's no greater question than who put the now-famous thimerosal rider into the Homeland Security Bill.

Washington has been so busy playing political "Where's Waldo?" that no one has actually bothered to explain the merits. We're happy to fill this void with the facts, especially because they show that protecting thimerosal from runaway legal liability is the right thing to do as a matter of public health. Far from ducking behind Capitol pillars, Republicans should be trumpeting their support.

The story of thimerosal begins in the 1930s, when it was introduced into vaccines to prevent infections from fungus and bacteria. The preservative, an organic mercury compound, was so safe and uncontroversial that nobody even noticed it for 60 years.

Then in 1997, as part of the FDA Modernization Act, Congress required the agency to do an inventory of mercury in all of its licensed drugs and vaccines. By 1999, researchers realized that kids were getting more shots these days, and that the thimerosal combined from all the vaccinations could, theoretically, slightly exceed an EPA mercury guideline. The findings were manna to the small but vocal anti-vaccination lobby that has spent years falsely claiming vaccines cause everything from multiple sclerosis to cancer. They soon claimed that thimerosal caused autism.

In retrospect, the researchers we've talked to agree it was the EPA standard that was the problem. The agency had based its number on a study of pregnant women whose ingestion of significant and sustained amounts of methyl mercury had led to children who later scored slightly lower on neurological and cognitive tests (nothing near autism). The EPA estimated the lowest possible amount a mother could have ingested to be associated with a disorder and then, to be ridiculously safe, divided that by 10. The agency's standard is below that of even the hyper-cautious Food and Drug Administration.

There's little evidence vaccines exceed even that extremely low level. Just last week a University of Rochester study published in Lancet looked at 61 infants -- 40 receiving vaccines containing thimerosal, and 21 receiving thimerosal-free vaccines. Most children had blood mercury levels of 1 or 2 nanograms per milliliter; the highest level, found in one child, was 4.11 ng/ml.

By comparison, the EPA standard is 5.9 ng/ml. The study also found that children excrete ethyl mercury more quickly than expected, so that it doesn't build up from one vaccination to the next. "A mom who eats a tuna fish sandwich probably passes along more mercury during breast-feeding than a kid gets in a vaccination," says Michael Pichichero, the study's lead investigator.

Most important, no scientific study has ever found a link between vaccines and autism, despite years of detailed research into the safety of vaccines. Even the World Health Organization continues to endorse the use of the preservative.

Sadly, the real losers of this wild goose chase are parents of autistic children, who've seen anti-vaccinators use their cause to divert time and resources away from legitimate research into the disorder.

U.S. public health agencies knew most of this in 1999. But they worried that anti-vaccine groups would use the FDA information to scare parents away from immunizations. So they hastily recommended that manufacturers immediately remove the preservative -- a huge mistake.

"We took it out precipitously, which made it look like thimerosal is harmful -- when there is no evidence it is. I think we hurt the public trust," said Paul Offit, who sits on the Advisory Committee on Immunization Practices and is chief of infectious diseases at the Children's Hospital of Philadelphia.

The recommendation brought unwarranted fear, vaccine shortages, and . . . tort lawyers. Usually, parents of the rare child injured by a vaccine must go through the Vaccine Injury Compensation Program before they can sue in regular courts. Set up by Congress in 1986 after lawsuits all but bankrupted vaccine makers, VICP ensures that victims get compensated quickly for genuine wrongs.

But the tort lawyers hate that VICP cuts out their giant fees, and they saw an opening in thimerosal. They've exploited every loophole to keep frivolous thimerosal cases out of VICP, and have instead filed hundreds of lawsuits against vaccine makers and Eli Lilly (which stopped making thimerosal 10 years ago). The four vaccine makers left are today stuck devoting their funds not to research into new, life-saving vaccines, but to paying legal bills.

These, readers, are the facts behind the thimerosal rider that is supposed to be so scandalous. All the legislation does is require that parents first go through VICP, as with any vaccine claim. They can sue later in other courts, if they choose (and assuming a statute of limitations problem is fixed). The vaccine court is much better positioned than other courts to decide on the merits of thimerosal cases. And it has the added social benefit of protecting vaccine research and production at a time when we need both to defend against bioterror.

None of this makes trial lawyers rich, though, and so they asked Senate Democrats, led by Joe Lieberman, to strip the rider away. They lost, but they did such a good media job that new Majority Leader Trent Lott has promised modifications to protect nervous Republicans who clearly haven't bothered to understand the issue.

We suggest they talk to Dr. Frist, who could supply a nerve transplant. If Republicans can't explain to parents that thimerosal is about supplying safe vaccines to their children, they don't deserve the majority.

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LETTERS

(We get Love mail, too.)

We Changed The Way The Federal Government Grant Agencies View Autism?

[This letter comes from Bob Koegel and Lynn Koegel, two noted behavioral researchers at the University of Santa Barbara who had their funding cut off from the NIH for reasons unclear. It is addressed to the members of our ad-hoc team who came together to try to turn things around: Catherine Johnson and myself from the FEAT Newsletter, and Lee Grossman, President of the ASA. It was my last project as a member of FEAT, who should also take some credit. –Lenny Schafer.]

We just wanted to tell you that Lynn and I have just heard that our NIMH grant proposal on autism intervention for nonverbal children will be funded, beginning January 1, 2003.

Lynn and I believe that your efforts to educate relevant people in the federal government grant agencies about the severe need for treatment for children with autism, played a large part in the eventual success of this project. This is the only large scale (RO1) autism intervention project being funded by NIMH at the present time.

It is also possible that you may actually have changed the way the federal government grant agencies view autism, and the need for help NOW for families. Lynn and I plan to continue our efforts to help you with your ongoing hard work.

Thank you for all of the help you have provided, and are continuing to provide to help not only us to do our work, but also help for the millions of individuals with autism and their families. Lynn and I hope that our efforts will continue to help you in your important work. This has been a very good team.

- Bob and Lynn

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A Gracious Thank You

I just wanted to drop you a note to tell you how much I appreciate your unwavering dedication to getting important news to all of us. I have two little boys (4 years and 3 1/2 years) that have Autism and I just don't have the time to scour the internet for all of the information that I need to keep up with. I just can't begin to tell you how much you help me on an almost daily basis. Thank you so very much.

- Lori Hyde, Fredericksburg, Virginia

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Lenny Schafer, schafer@sprynet.com Kay Stammers Edward Decelie

CALENDAR EVENTS@doitnow.com Michelle Guppy Ron Sleith

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