Schafer Autism Report June 24, 2003

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We read your report, Mercury linked to autism (June 19), with some dismay that yet again a single unpublished study that has not been subjected to critical scientific scrutiny has generated such an alarmist headline. Such articles, adorned with quotes from the usual band of crusading commentators who use any study, however flawed, to justify their beliefs, are misleading and irresponsible. Many suppositions are made in your report that fly in the face of common sense, logic, established facts, and other scientific evidence. Much publicity has been given to those who advocate that the MMR vaccine is the cause of the rising numbers of children being diagnosed as having an autistic spectrum disorder. This MMR scare began in 1998 with a study by Dr Wakefield et al published in the Lancet. The study has since been widely discredited and no valid scientific evidence has ever been produced to support such a hypothesis. On the contrary, a large number of rigorous scientific studies have testified to the vaccine’s safety and absence of linkage with autism. The MMR vaccine does not contain thimerosal.

Having failed to demonstrate the culpability of the MMR vaccine, we are now being told that it is thimerosal, a preservative present in a certain brand of the Diphtheria/Pertussis/ Tetanus vaccine (DTP), that is the cause of the perceived rise in autism in recent years. Better diagnosis and changes in diagnostic classification are often ignored as at least part of the explanation for the rise. This assertion is strange in the context that DTP vaccine has been in use for over 60 years and yet this claimed “epidemic of autism” is a relatively new phenomenon. In addition it is also the case that the amounts of thimerosal received by children from the infant immunisation programme in the UK have decreased in recent times. These facts clearly contradict a causal relationship between thimerosal and recent rises in autism.

Almost all previous studies on the toxicological effects of heavy metals such as mercury and lead have substantiated a positive correlation between very high levels of these substances found in hair and an increasing adverse effect on neurological development. Whereas in this quoted study the amount of mercury found in the hair of autistic children is less than in the non-autistic children. Yet somehow it is hypothesised, without any evidence, that mercury build-up somewhere else in the body is responsible for their autistic symptoms.

Finally, it is the view of this department that such unsubstantiated and ill-founded claims are detrimental to public confidence in the childhood vaccination programme. This programme has been an outstanding success in eradicating serious and life-threatening infections in recent times. Irresponsible scaremongering could eventually result in death and serious disability in many children if these diseases are allowed to return due to low vaccine- uptake.

It is also a cruel blow to all those parents of autistic children who are now being erroneously informed that they have permanently damaged their own children because of their responsible actions in attempting to protect their loved ones against the consequences of contracting such diseases.

Aberdeen, S.D. - The rate of autism cases has shot up in South Dakota, a trend that is also being seen around the nation.

There were 321 cases of autism among people ages 3 to 21 in South Dakota public schools during the 2002-2003 school year, according to the South Dakota Office of Special Education. That is a 700 percent increase from the 46 people with autism in public schools during the 1992-1993 school year.

According to data from the U.S. Office of Special Education Programs, the number of people ages 6 to 21 with autism served by the Individuals with Disabilities Education Act has increased 594 percent in South Dakota during the past decade.

The Autism Society says that based on various government statistics, the number of people with autism is growing by 10 to 17 percent every year nationwide. The organization estimates there could be 4 million Americans with autism within a decade. At present, 1.5 million Americans are believed to have some form of the condition.

The increase in the number of autism cases could be a result of improvements made identifying the condition and properly diagnosing it, the Centers for Disease Control and Prevention said.

Aberdeen resident Annette Allen, whose 8-year-old son, Thomas, is autistic, agrees. Parents now want to find out the real reasons for their children’s behavioral problems and not just think of them as odd, Allen said.

Brittany Schmidt, director of the autism program at the Center for Disabilities in Sioux Falls, said none of the top autism experts nationally or internationally know for sure why autism cases are increasing so dramatically.

Schmidt said she believes autism numbers are on the rise because medical professionals are better able to identify it. But she also said environmental or genetic factors could be causing the condition to occur more frequently.

In Thomas’ case, Annette Allen said his autism probably has a lot to do with genetics.

“There’s a lot of mental illness and (Attention Deficit Disorder) on both sides of the family. And there’s a lot of high IQs also,” Allen said.

Amanda Lautenschlager is the coordinator of the Autism Spectrum Coalition to Increase Opportunities Now, an Aberdeen-based autism support and resource group. She said those involved in the medical and school communities have joined to learn more about how they can help those with autism.

The coalition also acts as a support group for autistic people and their families. And it works to collect autism news and developments to keep its members up to date on the latest treatments.

The problem in South Dakota and other states is that people think those with autism cannot contribute to society, Lautenschlager said.

“There’s a preconceived notion out there about what autism is. People have seen movies like ‘Rain Man’ and kind of think that’s how people with autism are,” she said. “They don’t think people with autism can contribute to the community. Our biggest challenge is getting across the whole concept that autistic people can live healthy and productive lives.”

A new series of “mini-conferences” on the theories, causes and treatments of autism for both medical practitioners and parents is scheduled to kick-off Saturday July 19th and Sunday July 20th in Los Angeles. The mini-conferences, called Mini DAN!, are a downsized version of the renowned major DAN! Conferences which take place twice a year.

The Mini DAN! is designed for those parents and professionals who have difficulty traveling, and for those who have requested smaller, more informal programs. Dr. Jaquelyn McCandless (author of Children with Starving Brains and a well known autism expert) and the DAN! Conference organizers have established the Mini DAN! These programs will occur in various locations and will consist of a full day program for parents, followed by a day-long intensive training for a limited number of local practitioners.

On Saturday July 19th Dr. McCandless will present evaluation information on the most relevant tests that will help pinpoint a child’s health issues. Parents will be given general guidelines on how to work with their pediatrician and or DAN! trained practitioner to interpret these test results as well as how to prioritize specific treatment interventions.

The major DAN! conferences have become a well-recognized forum where leading experts report to parents and professionals on the latest research and theories regarding the causes of, and treatment options for, children on the autism spectrum. These conferences draw well over a thousand attendees, and typically alternate their location between the east and west coast.

The kick-off Mini DAN! conference is scheduled to take place at the Airport Marriott Hotel in Los Angeles, California Saturday July 19th and Sunday July 20th.

Dr. McCandless will be joined on both days by Teresa Binstock an autism researcher. Ms. Binstock will help dispel the myth that “there are no scientific studies supporting the biomedical approach to treating autism” by sharing published research pointing to the credibility and effectiveness of many DAN! based interventions.

Maureen McDonnell, the national coordinator of the DAN! conferences and a registered nurse for over 25 years, will discuss effective methods for correcting many of the biomedical disorders frequently found in children on the spectrum: including healing intestinal permeability, balancing bowel flora, practical ways to help children transition to a healthier diet and effective ways to administer nutrients.

The program on Sunday is specifically designed for practitioners and is limited to 25 participants. It will emphasize testing procedures, interpretation of tests, office procedures specific to this population, treating heavy metal toxicity, nutrient deficiencies and immune dysfunction. Guidelines for safely administering chelation therapy, as well as reviewing recent new treatments will be given with specifics such as nutrient and medication dosages and sources.

On both days at the Los Angeles program, the presenters will be joined by the lab directors from Doctors Data (David Quig, PhD), Metametrix (Richard Lord, PhD) and Immunosciences (Ari Vojdani, PhD).

Dr. McCandless and the DAN! Conference committee encourage those parents and practitioners who are not able to attend the larger DAN! conferences, or who wish to participate in this smaller more intimate forum to join them for this unique learning experience.

This update provides the latest information on California CADDRE’s activities and our collaborative activities with the national CADDRE Centers of Excellence in autism epidemiology. This update includes information on:

¨ Provide information on ASD to families including resources in multiple languages

Grants Received: California CADDRE received a $5,000 award from the Autism Coalition to produce an autism conference in spring 2004 titled, Services, Treatments, Advocacy and Research (STAR) Conference on Autism. Collaborators in this grant include the Family Resource Network and Children’s Hospital Oakland. If you would like more information or would like to be involved in the planning of this event, please contact Nila Rogosin, CADDRE Health Educator and Community Liaison at 510-622-4759.

Grants Under Review: California CADDRE investigators, Lisa Croen and Judith Grether have submitted a grant proposal to the National Institute of Health (NIH) to study Maternal Serum Alphafetoprotein (MSAFP) samples that were collected from pregnant women during the year 2000 in Orange County, California. Investigators will conduct a case-control study to examine early biologic markers that may impact the neurodevelopment of the fetus, and may increase susceptibility and exposure for autism.

The study will also examine thyroid hormones in newborn bloodspots of these children to look at neonatal hormonal levels as a risk factor for autism. If funded, the project will start in early 2004 and will carry on for three years. Results from this study will provide us with a better understanding of the underlying biology of autism, and may suggest appropriate strategies for early intervention and contribute to eventual prevention.

Out in the Field: We are actively collecting data on children with autism spectrum disorders at Regional Centers throughout California and Kaiser clinics in the Bay Area. We hope to start collecting data at additional Bay Area clinics by the end of this year. The collected data will provide us with more information about the prevalence of autism spectrum disorders in California. We greatly thank all Regional Center, Department of Developmental Services, and clinic staff who are helping to make this effort possible.

The National CADDRE Study: Investigators and staff at all six CADDRE sites (California, Colorado, Georgia, North Carolina, Maryland/Delaware, and

Pennsylvania) have been working very hard to design and finalize a CADDRE national case-control study protocol to investigate the possible causes and risk factors for autism. The final protocol will be submitted to the CDC Institutional Review Board (IRB) in September 2003 and then to each states’ local IRB. If funds are sufficiently in place, all six national CADDRE centers will begin recruiting families who have children with autism spectrum disorders, children with other developmental delays, and typically-developing children in the spring of 2004. We hope to recruit over 2000 families, making this the largest study of autism spectrum disorders to date.

New Study: Investigation of Maternal Antibodies in Association with Childhood Autism: California CADDRE center director, Judy Grether has received IRB approval from the state of California to conduct a case-control study of selected maternal IgG antibodies in newborn blood spots of children with autism and a comparison group of controls.

This study is a collaborative effort with the Genetic Disease Branch, Neurovirology Laboratory at Johns Hopkins University, Kaiser Permanente Division of Research, and the National Institute of Neurological Disorders and Stroke.

Update on The California Autism Study of Twins and Multiples: California CADDRE will be recruiting families who have a twin or other multiple born in California between 1987- 1998 with an autism spectrum disorder to be a part of this study. Families will receive enrollment materials from Regional Centers this fall. We hope to enroll over 400 families from California in the study over the next two years.

Clinic and School Observations: California CADDRE staff are currently observing the clinical evaluation process at child development clinics and visiting autism school programs in the Bay Area. We sincerely thank all who are cooperating in this effort including:

Community Outreach: California CADDRE was pleased to be a part of the following community events in these last few months. If you are interested in having California CADDRE speak with your organization, parent group or provide information at a community event, please contact Nila Rogosin, Health Educator and Community Liaison at 510-622-4759.

Autism Genes and Environment Conference (AGE II) September 13-15, 2004 in Sacramento: This year the AGE II conference will take place in Sacramento, California. The conference, sponsored by the National Institutes of Environmental Health Sciences (NIEHS) and the M.I.N.D. Institute will bring together clinicians, scientists, and parents to share and present information on current autism research efforts. The conference will also include a parent forum in which parents are able to ask scientists about the status and future of autism research and raise specific questions or concerns about their children with autism.

Interagency Autism Coordinating Committee: Judith Grether is pleased to join the Interagency Autism Coordinating Committee this July to speak about current barriers to autism research. This committee, lead by the National Institutes of Health, is comprised of many federal agencies, scientists, and parent advocates. If you have concerns or comments that you would like to share on this subject, please email them to autism@dhs.ca.gov.

1515 Clay Street, Suite 1700 Oakland, CA 94612 Phone: 510-622-4600 Fax: 510-622-4505 ...Working Together to Find Answers for Autism...

The extraordinary thing about Molly Nash is that she seems like a typical second grader in Englewood, Colorado. “She can be as stubborn as an ox,” says Lisa Nash, her mother, “and she smarts off now and then.” But like most 8-year-olds, she has redeeming qualities—a round, cheeky face, a toothy smile, brown bangs. She also takes dance lessons and plays soccer, and she’s a whiz in reading and math. “She’s a bit small for her age,” says Nash. “But not extremely small. There are kids in her class who are smaller.”

Smallness is a vestige of Molly’s tentative start in life. For a while Molly grew far too slowly, and the odds were good that she wouldn’t live much beyond the age of 6. She had been born with a rare disorder called Fanconi’s anemia, which was causing cells in her bone marrow—the ones that produce white blood cells and other defenses against infection—to fail. Molly needed new ones from a donor who was an almost exact genetic match. That meant that her parents needed to have another child, and fast. The trouble was, the odds of having one with the right genes and who didn’t himself have the disease were only one in four.

Fortunately for Molly, there was a way of loading the genetic dice. Mark Hughes, a molecular biologist, has worked for the past 10 years building and perfecting the genetic equivalent of a one-hour photo-developing shop. If parents want a child with certain genes, doctors first use techniques of in vitro fertilization to make dozens of embryos—however many it takes to ensure that one of them has the desired genes. Hughes’s technique, called preimplantation genetic diagnosis, then tells you which embryo to pick. What’s more, Hughes can perform the test in 24 hours, with time to spare for implanting the embryo into the womb. The Nashes used PGD to conceive Adam, now 2i, who successfully donated umbilical-cord blood to save Molly’s life.

Molly wasn’t the first child to benefit indirectly from PGD, and she won’t be the last. While the world panics over false claims of human cloning, PGD is quietly transforming reproductive medicine by giving parents unprecedented control over what genes their offspring will have. So far the technique has been used largely, as in Molly’s case, in laudable efforts to avoid passing along single-gene inherited diseases. But PGD makes some people nervous, because it also gives doctors a rudimentary ability to manipulate traits —the morally reprehensible practice of eugenics. At present, manipulating complex traits like intelligence or athletic ability is impossible, but it may not always be. The fear is that as other aspects of reproductive technology improve, PGD may be misused. “There are 900 genetic tests available or in development,” says Kathy Hudson, director of the Genetics and Public Policy Center at Johns Hopkins University in Baltimore, and a fellow of the World Economic Forum. “Determining which of these tests to offer to whom and at what point is really complex.”

Are the benefits worth the risk? Hughes, Molly’s parents and many others think so. PGD has in recent years moved into the mainstream of reproductive science. Clinics in London, Chicago, Tel Aviv and Brussels have recently begun to offer the procedure. Although Hughes doesn’t keep count, his personal computer lists dozens of obstetricians who’ve sent patients to his lab.

The process starts with the arrival of tiny plastic tubes packed in ice, each containing a single human stem cell plucked a few hours before from a three-day-old embryo. The cells come from fertility clinics, where would-be parents have their eggs harvested, fertilized and grown in petri dishes. By day three a human egg cell has managed to divide, on average, into only six stem cells. To find out if it carries the genes for Tay-Sachs or cystic fibrosis or sickle-cell anemia, the lab’s 60 researchers and technicians copy the sample cell’s DNA and analyze it with a Willy Wonka assortment of specialized machines. The trick is in coming up with clever ways of finding specific genes quickly, starting with only a single sample of DNA. Behind panes of glass, robotic hands shuffle trays of a hundred tiny test tubes.

The technique has attracted controversy in the United States simply because it involves embryos. In 1997 Hughes was accused of using federal funds for embryo work. He lost his funding from the National Institutes of Health and resigned from Georgetown University in Washington, D.C. (Hughes had initially taken up Molly Nash’s case, but was forced to abandon it. The Nashes eventually found a doctor in Chicago who performed the procedure.) Hughes moved to Detroit and set up the Center for Molecular Medicine and Genetics at Wayne State University.

The more substantial issue, though, is the specter of eugenics. At least one clinic in the United States is currently offering PGD services that allow parents to select the gender of their child, and more will surely follow. Hughes doesn’t condone the practice. “We won’t do gender selection,” he says. “Gender is not a disease.” What about fixing traits that make a good sibling donor? Are Hughes and other PGD specialists unwittingly turning children like Adam, selected to provide a transplant for his sister, into commodities? Hughes has struggled with this question and, he admits, has never managed to answer it unequivocally. He first confronted it when a case came up, before Molly Nash, while he was still working for the NIH in Washington.

“I was very worried about it,” he says. “We had meetings. We published in a serious bioethics journal.” Hughes is not the kind of person who finds it easy to say no, and it’s not hard to imagine him taking pains to avoid the impatient parents. One day the husband tracked him down at his lab unannounced. “I’ll never forget what he told me,” says Hughes. “He says, ‘While you’re running around the world sitting at mahogany tables debating the bioethics of this, our daughter is dying.”

‘People have children for all kinds of reasons’,” Hughes says, still paraphrasing. “ ‘They have them for money, they have them for power, they have them to work on the farm. Mostly they have them by accident. What’s wrong with our having a child we’re going to love very much, but who also has the miraculous power to save our other child’s life?’” It’s not an easy question to answer.

2. Director, King James Medical Laboratory Inc., 24700 Center Ridge Rd. Westlake, OH 44145, USA. 3. Vitamin Diagnostics, mc, Rt 35 & Industrial Drive, Cliffwood Bch, NJ 07735, USA. Correspondence to: Derrick Lonsdale MB, BS. FAAP 24700 Center Ridge Road, Westlake, Ohio 44145, USA

OBJECTIVES: In a Pilot Study, the clinical and biochemical effects of thiamine tetrahydrofurfuryl disulfide (TTFD) on autistic spectrum children were investigated.

SUBJECTS AND METHODS: Ten children were studied. Diagnosis was confirmed through the use of form E2, a computer assessed symptom score. For practical reasons, TTFD was administered twice daily for two months in the form of rectal suppositories, each containing 50 mg of TTFD. Symptomatic responses were determined through the use of the computer assessed Autism Treatment Evaluation Checklist (ATEC) forms. The erythrocyte transketolase

(TKA) and thiamine pyrophosphate effect (TPPE), were measured at outset and on completion of the study to document intracellular thiamine deficiency Urines from patients were examined at outset, after 30 days and after 60 days of treatment and the concentrations of SM-reactive metals, total protein, sulfate, sulfite, thiosulfate and thiocyanate were determined. The concentrations of metals in hair were also determined.

RESULTS: At the beginning of the study thiamine deficiency was observed in 3 out of the 10 patients. Out of 10 patients, 6 had initial urine samples containing arsenic in greater concentration than healthy controls. Traces of mercury were seen in urines from all of these autistic children. Following administration of TTFD an increase in cadmium was seen in 2 children and in lead in one child. Nickel was increased in the urine of one patient during treatment. Sulfur metabolites in urine did not differ from those measured in healthy children.

CONCLUSIONS: Thiamine tetrahydrofurfuryl disulfide appears to have a beneficial clinical effect on some autistic children, since 5 of the 10 children improved clinically. We obtained evidence of an association of this increasingly occurring disease with presence of urinary SH-reactive metals, arsenic in particular.

It was the day Peter and Beverly Chai-Seong of Cary and their three sons had waited eight years for.

The family from Canada went to the Charlotte immigration office to become U.S. citizens on June 6, but their plans soured when workers delivered bad news: 17-year-old Jeffrey couldn’t be sworn in because he is autistic and can’t speak the oath.

Now, Jeffrey’s misfortune has prompted an inquiry by U.S. Sen. John Edwards, and officials at the Bureau of Citizenship and Immigration Services say they’re taking action and that Jeffrey could be made a citizen within days.

“What was supposed to be a day of jubilation and excitement was pretty sad, because the youngest member (of the family) didn’t become a U.S. citizen,” said Peter Chai-Seong in a telephone interview from his Cary home.

In April, a mentally disabled Haitian woman in Miami who cannot speak sued federal immigration officials, saying they should waive the requirement that she speak the oath of allegiance.

Congress passed a law in 2000 permitting people who cannot speak to receive a waiver that would enable them to become citizens.

But three years have passed and immigration officials haven’t come up with any regulations to apply the 2000 law, said John Schewairy, a spokesman with the Bureau of Citizenship and Immigration Services.

So cases like Jeffrey’s are processed until the point when most applicants would take an oath and become a citizen. Then, they’re put on hold. A spokesman at the Charlotte Bureau of Citizenship and Immigration Services said Jeffrey’s case is one of seven in the Charlotte office alone.

Rulings about when guardians can speak for minors differ from case to case, Schewairy said.

There’s no telling when immigration officials will come up with a plan to implement the 2000 law.

But allowances can be made in individual cases, as will likely be the case with Jeffrey, Schewairy said.

In a letter sent Friday, Edwards urged Homeland Security Acting Director Edward Aguirre to implement the 2000 law.

“I understand that Jeffrey’s is not an isolated case and that there are many individuals and families nationwide who have been waiting for over two years for these regulations to be issued so that they, too, may enjoy the rights and privileges of being United States citizens,” Edwards wrote.

Peter Chai-Seong says although his son can’t express himself in words, he was visibly sad that he couldn’t became a U.S. citizen alongside his parents and two older brothers.

“Whatever the family does,” Chai-Seong said, “he wants to be part of it.”

I would disagree with Dr. Danczak about babies not smiling by six weeks of age [Letters, June 23,] as a sign of autism. In the USA infants are given the hepB vaccine at or before 24 hours of age. In addition, often times premature infants are given their two month vaccines two months after their birth, not when they WOULD HAVE been two months old.

In addition, a child that does not display a genuine smile by six weeks does not signify a developmental delay. After all, how many physicians have told us frantic parents that not talking, not walking, not making eye contact, not eating, and not playing is nothing about which to be concerned? If a baby not smiling at the six week deadline is a symptom of autism, why are there not seven week autism evaluations as part of every child’s well-visit?

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