SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

The Autism Calendar, November 2002 Update is out!

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Tuesday, November 05, 2002 Promote Your Event - Free! - Send a

CALENDAR LISTING:

RESEARCH

* MIND Inst to Use Leading-Edge Tech. in Search for Dx Test for Autism

PUBLIC HEALTH

* Families Raise Concern Over Mercury In Vaccines

* New Issue of Mothering Magazine "Best Coverage" of MMR-Vax Link

CARE

* Living Under A Violent Shadow

EDUCATION

* SpecEd Legal Fees For School District Stack Up, Money About to Run Out

TREATMENT

* Groups: USP Supplement Labels May Confuse Consumers

FUNDRAISING

* $50,000 Grant Given to The Mariposa School in Cary, N.C.

* Harleys Bring Holiday Cheer To Children

RESEARCH

MIND Inst to Use Leading-Edge Tech. in Search for Diagnostic Test for Autism UC Davis M.I.N.D. Institute Signs Technology Pact With SurroMed

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Sacramento - ASCRIBE NEWS via COMTEX - In response to a 1999 groundbreaking study that found elevated peptides in children with either autism or mental retardation, the University of California, Davis M.I.N.D. Institute is launching the most comprehensive study of its kind to identify diagnostic markers for children who are likely to develop autism.

"Being able to predict who might develop autism will have a enormous impact on children with the neurodevelopmental disorder by allowing us to intervene earlier with effective treatments or, hopefully, by preventing autism from occurring," said David G. Amaral, research director of the UC Davis M.I.N.D. Institute and principal investigator of the new study. "The 1999 study proved to us that finding a biomarker is possible, and it is a top priority for the M.I.N.D. Institute to identify it."

To conduct this important research, the M.I.N.D. Institute has entered into an initial agreement with the Mountain View, Calif., company, SurroMed, Inc. to analyze clinical samples from about 105 children -- about 70 with autism and the remainder with typical development. Using SurroMed's advanced technologies for profiling and analyzing thousands of immune cell populations, proteins and low-molecular-weight organic molecules, such as sugars, peptides or lipids, in small volumes of blood and/or other biological samples, SurroMed and the M.I.N.D. Institute will be able to identify any unique properties present in the blood chemistry of children with autism. The results of these studies will be a major step toward the development of diagnostic tests.

"Although this is a relatively small study, it is the most comprehensive analysis for biological markers of autism conducted to date, monitoring more biological variables than ever before," Amaral said.

One of the first studies funded by the M.I.N.D. Institute looked at the prevalence of eight peptides in blood spots collected from children at birth. The research discovered that several of the peptides were elevated in children who later became autistic or were mentally retarded, but not in children with cerebral palsy or normal control children. This work, conducted under the auspices of the California Birth Defects Monitoring Program by a team of researchers that included physicians Karin Nelson at the National Institutes of Health and Robin Hansen at the M.I.N.D. Institute, led to optimism that a diagnostic marker for autism could be identified using more sophisticated techniques.

"While their discovery was groundbreaking, the technology used in that study was slow, making it difficult to replicate or broaden," Amaral said. "With SurroMed's proprietary platform, we now have a technology that overcomes those earlier constraints."

Results from this current study are expected by December 2003 and, if promising, the M.I.N.D. Institute would enter into negotiations with SurroMed to transfer the entire research platform to the institute to better accommodate the analysis of larger numbers of children.

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PUBLIC HEALTH

Families Raise Concern Over Mercury In Vaccines

Debate Continues Over Past Use Of Thimerosal

Durham County, N.C. - Childhood vaccinations are arguably the most important public health advancement of the past century and have have saved countless lives.

A growing contingent of parents believes a mercury-based preservative in those vaccines may have done more harm than good.

In 1999, at the request of the Food and Drug Administration, drug companies agreed to begin removing a controversial preservative called thimerosal from vaccines. Some families believe the removal comes too late.

Jackson Bono is a happy, curious 13-year-old challenged by a myriad of medical and developmental problems. Jackson has trouble speaking and focusing and works with a tutor.

"The toll it takes on a family is remarkable," said Scott Bono, Jackson's father.

Like most parents, Scott and Laura Bono had their son vaccinated when he was a baby. They now blame his problems on thimerosal and its main ingredient, mercury.

"Little did we ever suspect that the very immunizations that were to protect him from childhood diseases were poisoning him with mercury," Scott Bono said.

Thimerosal kills harmful bacteria and has been in vaccines for decades.

In the early 1990s, the number of recommended childhood vaccines increased. Over the last decade the national autism rate has risen drastically. In North Carolina, the rate has more than quadrupled, according to the state Department of Public Instruction.

Some people see a connection.

If you add up the amount of mercury in baby vaccines with thimerosal, the levels exceed those considered safe for adults by the FDA.

The Bonos said Jackson was a normal, healthy baby until he received a bundle of vaccines when he was 16 months old. They said, soon after, he stopped talking and making eye contact.

Jackson developed autistic tendencies, like spinning uncontrollably. He also suffered severe allergies, seizures and stomach trouble.

"It was a cruel tragedy that happened with our son," Laura Bono said.

Dr. Samuel Katz, chairman emeritus of pediatrics at Duke, is considered one of the foremost authorities on vaccines in the country. He raises doubts that thimerosal ever hurt children.

"Whenever we have a problem, we like to know whose fault is it. Unfortunately, vaccines have become an easy target," he said.

Katz said, "The evidence to support these claims is lacking." However, in 1999, he recommended drug companies take thimerosal out of vaccines.

A 2001 report from the National Institute of Medicine also concluded the evidence does not support the claims. Researchers conceded, "the hypothesis is biologically plausible."

"Given that its mercury and we know that mercury has no beneficial effects, my statement to the FDA was that there's really no reason to use something like thimerosal," said Michael Aschner, a Wake Forest University neurobiologist.

Aschner has studied mercury for 20 years. Research from the University of Calgary backs up his work and found mercury can destroy brain cells.

Aschner points out that the ethylmercury in thimerosal is different from the damaging methylmercury found in some fish. He feels the issue clearly deserves much more study.

"If you do it in a dish, ethylmercury does cause significant effects, toxic effects. There's no question about it," Ascher said. "But, again, what you have to be careful of is how you translate what you see in a dish into a human being."

The biggest obstacle parents of special needs children face in making the thimerosal argument is the fact that millions of children, a vast majority, got the same vaccine and never got sick.

"Why is it that all people who smoke don't get cancer? The body reacts differently to different antagonists," Salisbury attorney Bill Graham said.

Graham represents 40 families who believe thimerosal hurt their children. He believes evidence is mounting that federal regulators knew that thimerosal could be harmful long before drug companies felt pressure to remove it from vaccines.

A study sanctioned by the Centers for Disease Control and Prevention shows infants immunized with thimerosal vaccines were 2.5 times more likely to develop neurological disorders, but it was never released.

Instead, the study continued and the results changed. Graham questions why vaccines were never recalled.

"Do you think that thimerosal vaccines that are potentially harmful could still be out there? They could be. They could be on the shelf right now," Graham said.

"I really think the thimerosal issue has become a feeding frenzy. It's like the sharks with blood in the water," Katz said.

The Bonos said they do not want blood. They want families like theirs to be heard for Jackson's sake, and others like him.

"He's lost his childhood and he may not ever be what he should have been," Laura Bono said.

Parents like the Bonos can file claims with the National Vaccine Injury Compensation Program.

Because of the debate over thimerosal, the federal government has put all the claims on hold until further studies are completed.

There was no recall of thimerosal vaccines, so it is possible some could still be on shelves.

Anyone with concerns should talk to their child's pediatrician and ask for thimerosal-free vaccines. Both sides of the debate stress the importance of immunizing children.

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New Issue of Mothering Magazine "Best Coverage" of MMR-Vax Link

[Report by Tory Mead.]

The new issue of Mothering Magazine, November/December issue, 2002, has the best coverage of the thimerosal/MMR issue I've seen to date. Over half of the magazine is devoted to "Vaccines and Autism? Is there a Connection," with contributions from the following:

Poison in our Vaccines: Investigating Mercury, Thimerosal, and Neurodevelopmental Delay - by Lyn Redwood, Safeminds.

Searching for Reasons Why: A Mother's Report on Autism - by Lyn Redwood

Fighting For Matthew: A parent's Activism - by attorney Liz Birt

Toxic Overload: Assessing the Role of Mercury in Autism - by Boyd Haley, University of Kentucky chemistry professor and his research on mercury

Gathering the Evidence: ASD, New Findings, and Public Policy - Dr. Jeff Bradstreet, a researcher's congressional testimony criticizes the Centers for Disease Control's record on vaccine safety

Balancing Biochemistry: An Interview with Dr. Stephanie Cave

To Order: Subscription Orders: 800-984-8116 Subscription Questions: 760-796-4859

E-mail for orders and questions: mother@pcspublink.com General

Inquiries: 505-984-6299

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CARE

Living Under A Violent Shadow

When Richard Fort was found bloodied and beaten under his bed at a South Jersey institution for the mentally retarded, investigators didn't need to look far.

Fort's roommate at the New Lisbon Developmental Center, 26-year-old Ronald Watts, admitted to the beating after police found his blood-stained sneakers in the closet of the bedroom where both men lived.

The real mystery was how Watts -- who spent time in two state psychiatric hospitals, had a history of assault and had been diagnosed with "intermittent explosive disorder" -- was permitted to share a room with anyone at all.

Advocates for the mentally retarded say the homicide at New Lisbon last year represented the worst-case scenario of what can happen when disabled people with aggressive tendencies live in close quarters with others least able to protect themselves.

It's a volatile combination.

"There are assaults every day," said Joseph Young, deputy director of New Jersey Protection and Advocacy, Inc., a legal watchdog agency for the disabled.

Critics say the problems are three-fold: the state does not know who is dangerous; residents of the state institutions live in crowded, difficult-to-manage conditions; pervasive staffing shortages make supervision impossible at times.

In response, state officials said they are committing significant resources to address staffing problems at New Lisbon, one of seven such centers that 3,300 people with autism, spina bifida, mental retardation and other developmental disabilities call home. Human Services Commissioner Gwendolyn L. Harris said she intends to hire enough people so the daily ratio at the institutions is one staffer for every four residents, half the current daytime ratio.

New Jersey has also spent $1.2 million for a team of consultants to assess the treatment for about two-thirds of the 579 people living at New Lisbon. In addition, the state spent $500,000 to assign nine psychologists there and is setting up a victim's counseling program.

Overall, the number of violent attacks reported at the state developmental centers has been climbing. An examination of state records found reported assaults more than doubled in the past five years, to 275 such cases in 2001. New Lisbon, where Fort was killed, had 1,100 reported episodes of assault, abuse and suicide attempts since 1995 -- more than any other institution in the state.

Officials explain that more residents at New Lisbon have behavioral problems, and are more likely to hurt themselves or others. They attribute the higher numbers to better reporting and staff training.

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EDUCATION

SpecEd Legal Fees For School District Stack Up, Money About to Run Out Ravenswood, Nearly Broke, Risks County Intervention

The Ravenswood City School District is spending so much on a special education lawsuit that it could soon run out of money, the county schools chief said Friday.

A Mercury News review of legal bills found the embattled East Palo Alto district spent $430,970 in July, $631,437 in August and $658,982 in September, nearly all of that to defend itself against the lawsuit, in which a judge has found the district failed to provide needed services to hundreds of children with disabilities.

"No school district could keep up with this level of expenditure," said San Mateo County Schools Superintendent Floyd Gonella, whose office could assume financial control over Ravenswood if it cannot rein in its spending. "You can't spend $400,000 a month and not be in trouble very quickly."

In fact, Ravenswood's spending on lawyers far outstrips that of other, larger school districts. For example:

• The Redwood City School District, nearly twice Ravenswood's size but not facing any significant lawsuits, has budgeted $58,000 for legal fees this school year, from July 1 to June 30.

• The San Jose Unified School District -- which, with 32,000 students, is more than six times bigger than Ravenswood -- spent just under $1 million on legal fees last school year. Of that, $365,000 was spent on a desegregation case.

In New York, a legal challenge to the state's system of providing aid to public schools -- a case affecting millions of children -- cost the state $11.4 million last year for a nine-month trial, according to published reports.

Ravenswood Superintendent Charlie Mae Knight said Friday that the district would be out of money if such spending continues for more than another month. And even though the school district agreed to a tentative settlement of the contempt charges Thursday, the proceedings may not end anytime soon.

Knight said this week that she expects the lawsuit to cost the district $7 million this school year -- nearly a quarter of its annual $30 million budget. The district serves 5,000 children in East Palo Alto and eastern Menlo Park, about 500 of whom have been identified as needing special education services.

Most of that $7 million will pay for legal fees, Knight said.

Ravenswood and the California Department of Education were sued in 1996 for failures including unnecessarily segregating students with special needs and providing them with untrained teachers.

Ravenswood's legal bills have long exceeded those of neighboring school districts. But until last year, county superintendent Gonella said, the district maintained a reserve of 12 to 15 percent in its budget, far above the legal requirement of 3 percent.

Last year, the reserves dwindled as the district assumed the cost of Knight's personal legal fees for a separate conflict-of-interest trial -- which ended in her acquittal -- and a federal judge held Ravenswood in contempt for failure to serve children with disabilities.

In the 2001-2002 school year, which ended June 30, Ravenswood spent $1.4 million on legal fees. The district paid $136,583 for Knight's trial, but most of the remaining fees involved the special education lawsuit. The district also spent hundreds of thousands of dollars more on special education consultants and court fees.

By the time Ravenswood submitted this school year's budget to the county for approval, its reserves had dropped to just above the legal 3 percent limit, Gonella said.

Now, with contempt proceedings against the district dragging on, legal fees have skyrocketed. In addition to paying its own counsel, Ravenswood is also responsible for paying part of the bills of lawyers for special education students.

U.S. District Court Judge Thelton Henderson first held Ravenswood in contempt in August 2001. He was scheduled to preside over an evidentiary hearing this fall to determine whether the district is still in contempt and, if so, determine an appropriate punishment that could be as severe as a state takeover.

But in August, lawyers for the district and children with disabilities asked Henderson to put plans for the hearing on hold while they tried to settle the contempt proceedings -- in part because of the high cost of such a hearing.

On Thursday, the Ravenswood school board announced it had approved a tentative agreement with the children's lawyers to settle the contempt proceedings. But the children's lawyers then said the agreement may be meaningless because the district and the state cannot agree on how to pay for new measures to improve Ravenswood's special education program.

Ravenswood cannot afford to implement a new special education improvement plan, and the California Department of Education has not agreed to provide financial support. If the deal falls apart, plans for the evidentiary hearing before Henderson will resume.

Meanwhile, state auditors have recommended that the education department require Ravenswood to return $1.4 million it received last school year for federally subsidized meals because the district could not adequately document how the money had been spent. That alone could place Ravenswood on the verge of bankruptcy, Gonella said.

Ravenswood must submit an interim budget report to the San Mateo County Office of Education by Dec. 15. If the district is no longer fiscally solvent at that point, the county superintendent could assume the power of the locally elected school board to make financial decisions. Three of five seats on the school board are open in Tuesday's election.

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TREATMENT

Groups: USP Supplement Labels May Confuse Consumers

Reuters Health - A national standards-setting organization will begin certifying dietary supplements this year, but some argue that this certification may be misleading to consumers.

Verification by the US Pharmacopeia (USP), which sets standards for the quality of medicines and their use, will mean that the USP guarantees the amount of an active ingredient contained in a supplement, as well as its freedom from contamination. But the labeling does not certify that a product is safe or prove that it is beneficial.

"Neither the mark, which says 'Dietary Supplement Verified,' nor the accompanying explanations make that distinction clear and we think the mark should be more specific," said David Schardt, senior nutritionist at the Center for Science in the Public Interest, a Washington, DC-based education and advocacy group. "There shouldn't be any question in the consumer's mind."

The National Consumers League, another DC-based advocacy group, also criticized the USP verification program. "We hope that USP will go back to the drawing board and design something that will be clearer and convey to consumers that the product has not been tested for safety or efficacy," the league's president, Linda Golodner, said in a statement.

But Dr. Srini Srinivasan, the vice president of the USP's Dietary Supplement Verification Program, says the organization's market research shows that there's no need to revise the mark. The first product to bear the USP label--Pharmavite's vitamin E pills--is set to come on the market this month, and about 50 USP-marked products are expected before the end of the year, according to Srinivasan.

Under the Dietary Supplement Health and Education Act of 1994, supplement manufacturers are required to have on file substantiation of any claims they make about how a product affects the structure or function of the body. They must also notify the Food and Drug Administration (FDA) of claims that they are making within 30 days of marketing a given dietary supplement.

However, the FDA does not regulate ingredients in supplements or dosage levels.

Dietary supplement manufacturers are increasingly feeling a need to reassure consumers about their ingredients, noted Tod Cooperman, the president of ConsumerLab.com, a commercial testing company based in White Plains, New York, that licenses its "Seal of Approved Quality" to products that pass testing. "It's become an important marketing tool for companies," he said.

Indeed, findings that some dietary supplements didn't contain what they claimed to or were contaminated with heavy metals or pesticides led to public suspicion, Cooperman added. "There was a definite need for the testing. We have found that one out of four supplements has some kind of problem and it's even worse with herbal products: 39% have some kind of problem," he explained.

The USP is the third group to begin offering certification for dietary supplements, along with ConsumerLab.com and NSF International, a non-profit group based in Ann Arbor, Michigan.

While ConsumerLab's certification tends to reach "the more Internet-savvy, heavy supplement user," noted Tom Zimmerman, vice president of customer marketing for Pharmavite, the new USP program is directed to "regular supplement users at the retail shelves.

"Different programs are important for reaching different audiences," Zimmerman noted.

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FUNDRAISING

$50,000 Grant Given to The Mariposa School in Cary, N.C.

The Michael & Laura Brader-Araje Foundation Gives to School that Provides One-on-One Instruction to Children With Autism

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Durham, N.C. PRNewswire via COMTEX - The Michael & Laura Brader-Araje Foundation announced today that it has awarded its annual Spark Grant to the Mariposa School for Children with Autism. The Mariposa School, based in Cary, North Carolina, provides intensive, individualized instruction to children with autism, targeting the broad range of educational, behavioral, speech, social and motor dysfunctions that affect them.

Cynthia Peters founded the Mariposa School in December 2000. Peters is the mother of a nine year-old son with autism. Her goal is to help children and their families deal with the challenges of autism. "I want people to know that autism is not a hopeless condition. There are very tangible changes that can be made with the right kind of treatment early on," explained Peters. "It is possible for these children to lead a functional life instead of being institutionalized."

"Laura and I believe that our financial support and our personal involvement can have a genuine, positive impact on the school and the children it serves," said Michael Brader-Araje. "As part of our due diligence, we talked to parents of children with autism and saw the overwhelming challenges they face. We want to do whatever we can to make those challenges a little less daunting."

"The Mariposa School helps fill a tremendous need for these families," said Laura Brader-Araje. "It not only meets an educational need, but also provides a valuable support network to help these children and families deal with the realities of autism."

In addition to financial assistance, the Foundation will provide support and resources to facilitate business planning, budgeting, additional

fund- raising, and the creation of an outreach program. Michael Brader-Araje will also join the school's board of directors.

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Harleys Bring Holiday Cheer To Children

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About 350 motorcyclists distribute presents to Kennedy Krieger patients By Gabriel Baird Sun Staff Originally published November 4, 2002

Boys and girls pointed, cheered and covered their ears yesterday as hundreds of motorcycles thundered into the parking lot behind the Kennedy Krieger Institute on Greenspring Avenue in Baltimore.

Jimmy McHenry, a 16-year-old inpatient at the institute, marveled at the parade of chrome and custom paint jobs, while the younger children seemed most excited when the last bike pulled in towing a red sleigh piled high with toys.

"It really gives the kids a time to come out and have a good time," said McHenry, who watched over some of the smaller patients as if they were younger siblings. "You know how hard it is for them to cope and all."

The institute treats children with autism, cerebral palsy and other disabilities of the brain.

Each of the nearly 20 patients on hand received at least one early Christmas present, thanks to more than 350 motorcyclists who participated in one of the season's first toy drives.

Piles of other presents were left for children who could not attend.

Several of the kids had an opportunity to mingle with bikers, honk horns or try on helmets. When one girl with an oxygen tank mentioned to a leather-clad rider that she liked the stuffed bear at the top of the pile of goodies, he got it for her immediately.

Gary Stahl, 52, of Baltimore saw the way such acts affected his fellow riders.

"You bring all of these kids out here, and you see some of these big, bad riders get choked up," Stahl said.

He and Rich Bernard of Jarrettsville, 42, said they prefer this interaction to less-personal opportunities for giving.

"This toy drive isn't like the rest of them," said Bernard, who had pulled the sleigh behind his 2001 Harley-Davidson Ultra Classic. "We pull up here, and these kids get the toys right now."

The drive was started in 1999 by April Darchicourt, 40, of Baltimore.

She and her husband had been active members of the area's motorcycle community long before their daughter, who had been a patient at the institute, died in 1999.

That first year, the event attracted nearly 100 riders. Each year it has grown.

Darchicourt had hoped that 1,000 bikers would participate this year in the ride, which began at the Harley-Davidson dealership in Rosedale and traveled to the institute with a police escort. But she was pleased with the turnout.

"This is my way of helping the kids," Darchicourt said. "It eases my pain."

Even more than the gifts, McHenry enjoyed having his brother snap pictures of him in front of his favorite three-wheeled Harley-Davidsons.

"I'm a trike fan," he said. "They're one of my favorite things." Copyright © 2002, The Baltimore Sun

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