SCHAFER AUTISM REPORT "Healing Autism:

No Finer a Cause on the Planet"

The Autism Calendar, November 2002 Update is out!

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RESEARCH

* Natural or Synthetic Secretin Doesn't Reduce Autism Symptoms,

Study Shows

* Autism, Milk Link 'Hidden'

* Scientists Discover Link of Infections In Mothers & Brain Injuries

In Babies

* Researcher Invites Tennessee Autistic Children Into Five-Year Study

COMMENTARIES

* NAAR Joins CDC to Fund 'Danish Study' Says For Science, Not Politics

* Suspicions about the Safety of Vaccines: "Anecdotes Are Not Proof"

+ Anecdotal Evidence

+ Hypothesis

+ The Straw Man Argument

CARE

* Mother Finds Autistic Son In Handcuffs At School

RESEARCH

Natural or Synthetic Secretin Doesn't Reduce Autism Symptoms, Study Shows

Secretin, touted as a possible cure for autism just three years ago, is not a magic bullet that relieves the symptoms of the developmental disorder, report researchers at the University of Washington and the University of Colorado Health Sciences Center. Their study, which involved the largest and most-comprehensive trials of the hormone yet conducted, is published in the November issue of Journal of the American Academy of Child Adolescent Psychiatry."The message to parents is that there is no evidence that secretin is effective and should be given to children with autism," said Geraldine Dawson, director of the UW's Autism Center, who co-led the study. "We have yet to find a medicine that cures autism, and the results really underscore why research for the cause of autism is necessary."

The study is believed to be the first to measure the effectiveness of both natural porcine secretin and a synthetic form of the hormone and a placebo. Secretin is a naturally occurring human hormone produced in the small intestine that helps control digestion and is used in diagnosing gastrointestinal problems.

Autism is a disorder that interferes with a child's ability to communicate and relate socially with other people. Afflicted individuals also can have a restricted range of activities and interests, and about 75 percent of children with autism also have some form of mental retardation. The disorder is far more common than previously thought, affecting more than half a million Americans. The researchers found that neither form of secretin reduced the symptoms of autism beyond the effects noted for the placebo.

"With autism we know there is a very large placebo effect, so you have to show a bigger effect to say a treatment worked," said Dawson. "We don't fully understand the mystery of the placebo effect in medicine. But the expectancy that a treatment will work can have a real positive impact. It is not an imagined effect, but real change because of the expectancy of some possible change." In the study, 85 children diagnosed with autism and ranging in age from 3 to 12 were each given a single intravenous injection of one type of secretin or a placebo in randomized, double-blind trials.

The children were evaluated on a number of factors, including language, social functioning and behavior problems by parents, teachers and researchers one week before receiving the injection and again four weeks after being injected. None of those doing the evaluations knew what type of injection each child received. Parents were asked about their child's behavioral and sleep problems and their vocabulary, while teachers were primarily asked about behavior problems. In laboratories, investigators rated and diagnosed the children in a play-based interaction that tested social and communication functioning. The children also were given a vocabulary test.

In addition, the researchers compared children with and without gastrointestinal problems, common symptoms for many people with autism. The initial report claiming benefits from secretin in the late 1990s came from a study in which the hormone was used in diagnosing a child's gastrointestinal problems. Again, Dawson said, the new study showed there was no response beyond that shown from the placebo.

"Secretin is not a magic bullet," she said. "When parents first heard about the initial reports some were paying huge sums of money for secretin treatment. The National Institutes of Health decided to commission this study in response to a high visibility case where parents were using a treatment that had not been assessed. The available evidence suggests there is no role for secretin.

"There is still a possibility that repeated doses of secretin might have an effect. But we think parents should use treatments that we know are effective, such as behavioral interventions and, in some cases, drugs to treat associated symptoms such as attention problems and hyperactivity that affect many children with autism."

Other members of the research team included Dr. Alan Unis, a former UW professor of psychiatry and behavior science; Jeff Munson, a research scientist in the UW's autism research program; Julie Osterling, clinical director of the UW's Autism Center; Robert Abbott, UW professor of educational psychology; Dr. Ed Goldson, professor of pediatrics at the University of Colorado Health Sciences Center; Sally Rogers, professor of psychiatry at the Colorado center and JFK Partners; and Robin Gabriels, a psychologist at the Colorado center and JFK Partners.

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Autism, Milk Link 'Hidden'

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Dairy giant Fonterra is trying to suppress explosive research linking milk with autism in children, according to a lawsuit filed in New Zealand's High Court.

All milk and dairy products sold in Australia are potentially affected by the research, including Fonterra's top-selling brands Mainland, Peters, Tip Top and Bega.

A secret internal Fonterra memo, dated October 2000, reveals the New Zealand-based co-operative was warned by its own scientist of research suggesting autism, schizophrenia, diabetes and heart disease could be triggered by proteins found in all of its milk products and infant formulas.

The memo, tendered in the High Court case, says there is "growing evidence, but yet unproven, that peptides released from milk may be related to occurrence of some mental disorders".

"If the media were ever able to assemble the information shown in this paper they could put an alarmist spin on the whole area of milk consumption," the internal briefing paper to directors of Fonterra, then known as the New Zealand Dairy Board, says.

The research relates to a protein in A1 milk, which is the most commonly produced milk in Australia. The protein - beta casein A1 - is also allegedly a risk factor for childhood diabetes and coronary heart disease.

The Australian and New Zealand Food Standards Authority says all milk sold in Australia is A1 type. Its spokeswoman said it had not warned the public because of ongoing legal action.

The accusations are made by A2 Corporation, a New Zealand biotechnology company formed by dairy scientist Corran McLachlan in 2000.

Dr McLachlan alleges Fonterra has secretly applied for patent applications on research linking A1 milk with autism. But Fonterra accuses Dr McLachlan of publicity-seeking for A2 Corporation's own milk, which does not contain the protein. Dr McLachlan plans to launch A2 milk in the New Zealand market as early as Christmas.

"This is a public interest matter," Dr McLachlan told The Australian. "We believe this information is being suppressed and that is why we are risking so much money on a High Court case."

Dr McLachlan said he would be wary of feeding A1 milk to children. "I would not encourage my kids to drink lots of milk," he said.

Fonterra chief executive Craig Norgate denies any cover-up. "There is nothing in the research that gives us concern. We would be the first to take a responsible public stand if we felt it was warranted."

A2 Corporation wants the court to force Fonterra to reveal all research it has linking A1 milk to autism, and to put health warnings on its A1 milk.

The Fonterra memo says University of Florida scientist Robert Cade reported in 1999 that children with autism and schizophrenia had extremely high levels of BCM-7, a compound produced by the digestion of A1 milk.

The potential for A1 milk to trigger childhood (type 1) diabetes was first reported by Auckland diabetes specialist Bob Elliott in 1994 and later supported by further research in 1999.

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Scientists Discover Link of Infections In Mothers & Brain Injuries In Babies UT Southwestern Medical Center at Dallas

Scientists at UT Southwestern have unraveled a mysterious connection – a potential mechanism that links brain injuries in infants to an infection in the mother's placenta. Their findings, published in the October edition of Pediatrics, could eventually lead to diagnostic tests for infants and mothers that could help prevent brain injury.

"The most critical issue in preventing and treating brain injury in infants is figuring out where the damage begins and what triggers it," said Dr. Jeffrey Perlman, professor of pediatrics at UT Southwestern and senior author of the study. "Our study opens a new pathway of understanding, but we still don't have all the answers."

The study reveals the link between brain injury that occurs during the perinatal period - immediately before and after birth - and an infection in the mother's placenta, called chorioamnionitis, which causes fever, inflammation, and abnormally high heart rates in the unborn child.

"Our study revealed the cause of brain injury in infants is not as simplistic as initial studies indicated," said Perlman, also professor of obstetrics and gynecology, and anesthesiology and pain management. "These findings bring us a small step closer to understanding how the brain is injured and could eventually lead to new strategies for controlling infection and, more importantly, for preventing brain injury."

Earlier studies have pointed to lack of oxygen as the primary cause for neonatal brain injuries, including cerebral palsy. Brain injury during the perinatal period is one of the most common causes of severe, long-term neurologic deficit in infants and children. Each year, one in 1,000 babies is born with brain injury in the United States - about 4,000 annually.

The UT Southwestern researchers studied 61 full-term infants who were admitted to the neonatal intensive care unit at Parkland Memorial Hospital over a two-year period between July 1999 and December 2001. They examined the babies' umbilical cord blood for infection and also conducted extensive neurological examinations twice in the first 24 hours of life.

"We discovered a significant correlation between the increased elevation of inflammation in the mother's placenta and a reduction in neurological function in infants," Perlman said. "This is the first time such a relationship has been established."

By measuring specific inflammation markers in cord blood at birth and then again at 12 to 14 hours of age, researchers discovered infants with higher levels were "floppy," or had poor muscle tone.

"The five infants with the highest level of biomarkers either had a brain dysfunction known as encephalopathy or seizures," said Dr. Octavio Ramilo, study collaborator and associate professor of pediatrics and microbiology.

Brain injuries in newborns usually result in weakness or paralysis, mental retardation and/or seizures. About half of the children suffering from brain injuries must use braces, walkers, or wheelchairs as they get older.

Other UT Southwestern contributors to the study were Dr. Abbot Laptook, professor of pediatrics, and obstetrics and gynecology; and Dr. Hasan Jafri, assistant professor of pediatrics. Dr. Lina Shalak, the principal author of the study, was a fellow in neonatal intensive care at UT Southwestern at the time of the study and is currently a pediatric resident at Children's Medical Center of Dallas.

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Researcher Invites Tennessee Autistic Children Into Five-Year Study

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A University of Washington researcher wants Tennessee families with autistic children to help her uncover the causes of autism.

Dr. Geraldine Dawson, psychology professor and director of UW's Autism Center, is looking for families with two or more autistic children of any age for the $10.2 million study, funded by the National Institutes of Health.

After a phone interview to make sure the children meet the criteria for autism, Dawson's team of researchers will draw blood from children and other family members for DNA samples. Earlier studies found that some traits of autism can be seen in relatives of autistic children. The researchers hope finding certain mutations of DNA in the autistic children will help them understand the cause of autism - and, eventually, how to treat it.

"What we know is that autism clearly has a strong genetic component," Dawson said. "A model suggests five to 10 genes contribute to autism - risk factors, you could call them. "

Locating the genes also could lead to the ability to screen newborns for autism, giving opportunities for earlier intervention. Research has shown that autistic children who are identified as autistic early in life tend to do better than those who aren't. Dawson's team is recruiting families in Tennessee, Alaska, Arizona, California, Colorado, Florida, Georgia, Idaho, Montana, New Jersey, New York, North Carolina, Oregon, Pennsylvania, Texas and Washington.

Initially, families will participate in a few phone interviews and one clinic visit for blood work. Families will be reimbursed for any travel expenses and will receive $150 compensation per family for their time. Autistic children will also get free cognitive testing, which Dawson said many families find helpful, and parents will be given the results of the research as it becomes available. They'll also receive the center's newsletter and "become part of our community here," Dawson said.

Dawson expects the study to take five years. For information on participating, call 1-800-994-9701.

Copyright 2002, Knoxville News-Sentinel Co.

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COMMENTARIES

NAAR Joins CDC to Fund 'Danish Study' Says For Science, Not Politics

As a follow up to the interesting news last week that the parent autism research advocacy group, National Alliance for Autism Research, had helped to fund the controversial study, we sent a note to Karen London, co-founder of the organization, with a follow up inquiry. We mentioned that there is some speculation floating around as to NAAR's purpose beyond science in funding the Danish study:

It is doubtful that the CDC really needs NAAR's help to get this kind of research funded. As a parent research advocacy group, NAAR's participation in the study helps lend it further credibility, public health officials are no doubt grateful. If the science in this area of research is in the least danger of being overlooked, what then might be NAAR's political benefit as a result of joining with the CDC on this high-profile project? Will NAAR now have greater credibility and influence with public health agencies in matters of research? Does it help with private fundraising efforts in general, which possibly includes funding from the pharmaceutical industry? Here is Karen London's response for the organization. – LS

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NAAR decided to fund this study based on the strength of its design and integrity and because – in our opinion – not enough quality research has focused on the issue of the MMR vaccine and autism. It is an area of intense debate and significant interest among parents of children with autism that deserves serious attention.

The basis of NAAR funding any project, including the Danish study, is

simple: the quality of the science, based on the review of our Scientific Advisory Board. Political ramifications and future development opportunities never play a role.

When NAAR funds a study, we do not know what the outcome will be. If the Danish study had found a link between the MMR vaccine and autism, NAAR’s motive for funding the study would be the same: quality science.

NAAR strongly supports efforts being made by federal health agencies in the area of autism, most notably at the Centers for Disease Controls & Prevention and the National Institutes of Health, and looks to partner with both agencies as well as our fellow autism organizations and members of Congress to increase the federal government’s investment in autism research.

We do not fund projects in the hopes of gaining credibility with public health agencies or the pharmaceutical industry. We have earned our own credibility through funding quality research. To date, NAAR-funded pilot studies and collaborative programs have been leveraged to attract more than $21 million in larger grants from the National Institutes of Health and other sources.

The engine that brings NAAR to life is the passion and commitment of our volunteers – parents and family members of people with autism – who share NAAR’s vision of accelerating the pace of research until the answers are found.

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Suspicions about the Safety of Vaccines: "Anecdotes Are Not Proof"

Vaccines represent one of the most effective interventions in medicine. They can protect whole populations from potentially dangerous diseases. Because vaccines are usually given to healthy people, especially children, any concern about the safety of vaccines has to be taken very seriously. Even with close scrutiny, the overall safety record of vaccines is extraordinarily good.

Despite this safety record, for a surprising number of vaccines, there have been widely publicized but unsubstantiated claims of adverse effects (see Table). When suspicions about a vaccine begin to spread, there may be dangerous consequences for the public health. Such is currently the case with the live attenuated measles virus in the vaccine against measles, mumps, and rubella (MMR), which some people erroneously believe is a cause of autism.

Vaccines can cause serious adverse reactions. Documented examples include paralytic disease from the live polio vaccine and intestinal obstruction from the rotavirus vaccine. When these problems occurred, they were recognized and addressed. Because of fears of bioterrorism and smallpox, it is possible that vaccinia vaccination may resume. The live-virus vaccinia vaccine causes many adverse reactions, including rare but severe, or even fatal, infectious complications.

Concern about autism and the measles component of the MMR vaccine began with the awareness that encephalitis is a rare but devastating complication of measles. Some survivors of measles have immune-mediated postinfectious encephalomyelitis with seizures and mental retardation. The hypothesis about the measles vaccine and autism also rests in part on some widely publicized research involving a small number of young children with chronic gastrointestinal symptoms and behavioral abnormalities.

The researchers speculated on a causal relation among MMR vaccination, abnormalities in lymphoid tissue, and developmental disorders such as autism. Together, these findings have led some to conclude that the measles virus in the MMR vaccine is a cause of autism in children. When a child has autism, the parents begin to notice problems during the second and third years of life. Sometimes, there is severe regression in language and social skills in young children who initially seemed to be developing quite normally.

Since the MMR vaccine is given at the beginning of the second year of life, there is a temporal association between vaccination and the recognition of autism. The situation is further complicated because the frequency of autism appears to have increased by at least a factor of five during the past 20 years. This increase is probably the result of better reporting and wider use of this diagnosis to describe children with unexplained cognitive and behavioral disorders. However, fears only grow when there appears to be an increase in the prevalence of a severe and unexplained disease in children.

A report in this issue of the Journal (pages 1477—1482) provides an objective analysis of the rates of autism in relation to MMR-vaccination status in a well-defined population of more than half a million children in Denmark, about one fifth of whom had not received the MMR vaccine. This careful and convincing study shows that there is no association between autism and MMR vaccination. Other studies have also found no such association.

Unfortunately, objective data are not likely to put an end to the controversy. Strongly held beliefs are difficult to change. We live in an era in which the public does not have a high degree of trust in the vaccine manufacturers, the government, or the medical establishment. Consumers have become highly sensitive about safety, and their confidence has not been bolstered by recent recalls of approved drugs or by controversies such as that over mercury-containing preservatives in vaccines (thimerosal, which has now been removed). The large number of approved vaccines and the laws that require vaccination for school entry only increase the tension. Some anti-vaccine groups have received wide publicity, and they try to convince worried parents that avoiding vaccination is “playing it safe.” Internet sites are filled with accusations about damage from the MMR vaccine and other vaccines. Some parents tell moving stories about their children who showed the first signs of autism in the months after vaccination. Such experiences have already led to congressional hearings. But however painful these stories may be, anecdotes are not proof. The association of autism with MMR vaccination appears to be only a predictable coincidence, since nearly 90 percent of children in this country receive the MMR vaccine at about 15 months of age.

Unsubstantiated accusations that a vaccine causes harm can have serious consequences. Some people begin to avoid vaccination, increasing the number at risk, particularly in communities where anti-vaccine activists are most successful. Once a vaccine has been tied repeatedly to even an unsupported claim of an adverse effect, costly legal action usually follows, even if the vaccine is eventually proved to be safe. The companies that produce vaccines come to associate vaccines with adverse economic effects for themselves, with little profit and huge liability. Effective vaccines may be withdrawn from the market. It becomes harder to run vaccination programs, including those in developing countries where the needs are greatest.

Those arguing against vaccination forget how bad the illnesses and their complications can be [See the "Straw Man Argument" below. –ed.]. They forget that in this country before the development of the measles vaccine, thousands of children had severe illness from measles, sometimes resulting in permanent disability. In 1960,400 children died from measles. But the biggest tragedy is that outside of the developed countries, more than a million children still die from this disease each year. Those deaths are preventable by a measles vaccine that is cost effective and safe. Children everywhere deserve the protection that carefully developed, carefully monitored vaccines can provide against so much disease.

Examples of Unsubstantiated Claims Made about Some Vaccines.

VACCINE UNSUBSTANTIATED ADVERSE EFFECTS

Measles vaccine Autism and related developmental disorders

Diphtheria—pertussis—tetanus

vaccine Sudden infant death syndrome; epilepsy

Haemophilus influenzae type b Diabetes mellitus

Inactivated polio vaccine Paralytic poliomyelitis;

simian virus 40 infection

Hepatitis B vaccine Multiple sclerosis

Anthrax vaccine Fatigue; Gulf War syndrome

Lyme disease vaccine Chronic inflammatory arthritis

“Hot lots” (some batches

of any vaccine) Multiple systemic problems

Multiple vaccinations Undefined harmful immunologic effects from

vaccine interactions

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Anecdotal Evidence

One of the scientific rules [of the scientific method] is that anecdotal evidence doesn't cut it. Suppose I tell you that I thought of a long-lost friend. Just then the phone rang, and it was my old friend. That's a nice anecdote. So why doesn't it prove anything about precognition? If this story proved anything, it would be proving that the unlikely had happened. But there's no way to tell if the event was in fact unlikely. Perhaps I think about the friend a lot. Perhaps I've thought of people a zillion times, and only one of them phoned. And there's the lottery-ticket thing. The person with the winning ticket sees that as very unlikely. But someone had to win. So, how many other people thought of a long-lost friend, and got no call? I don't know the answer. And until I know the answer, the anecdote doesn't prove anything.

A large collection of anecdotes isn't necessarily any better than a small collection. There are several famous cases where large groups of people all swore that some new remedy was a wonder cure. (For example, Mesmer's "animal magnetism".) The main value of the collection is that their number might inspire someone to look into the matter properly [See "Hypothesis" below. -ed].

Anecdotes about health are often useless. This is because some number of patients will get well anyway, no matter what treatment they receive. If a cancer goes into remission, it is very human to think that some recent change caused a cure.

Anecdotes are also entirely too susceptible to being unverifiable. If someone tells a story, and you press him for details, it is entirely likely that he doesn't have them. He can't remember, it was long ago. Or, no doctor ever actually verified the disease, much less its cure. Or, it turns out it didn't actually happen to him: it happened to his sister. If you force him to contact his sister, she remembers it differently. Or, worse, it turns out it happened to a friend of the sister. We are now chasing down a FOAF (Friend Of A Friend) story. FOAF stories are usually rumors or "urban legends".

In short: anecdotes, bleah.

Hypothesis

A hypothesis is a formulation designed to explain observations, and to give a framework for testing. With a hypothesis one begins with evidence and looks for the probable cause. Anecdotes are evidence; evidence to be weighed, not arbitrarily dismissed.

The Straw Man Argument

A Straw Man Argument is a statement one makes if one wants to more easily attack an opposing position. One intentionally make a silly caricature of that position, one that no one would really believe, knock down that silly, unrealistic caricature (the constructed Straw Man), and then proclaim that the original version of the argument has been demolished. In this case, the exaggeration is to characterize those who advocate for safer, or better tested vaccines, as being "against vaccination".

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CARE

Mother Finds Autistic Son In Handcuffs At School

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Houston - A Houston-area mother who went to pick up her 8-year-old son at school said that she found him handcuffed and lying face down in his classroom in northwest Harris County.

The incident happened Monday at Haude Elementary School, 3111 Louetta Road, in Spring.

Lisa Calvin told Houston's KPRC-TV that she is upset after seeing her son, Adam, who is autistic and functions at a 5-year-old level, in handcuffs.

"It felt like some kind of freak show," Calvin said. "I could hear him begging. He was saying, 'please take these off' and he was crying. When I saw him on the floor, he was soaked in sweat."

Calvin said that her son was handcuffed by a Klein Independent School District police officer after having a tantrum.

"I heard the cop tell him, 'Boy when you calm down, I'll take these off of you.' (It was) what he was saying when I was coming down the hall," Calvin said.

Klein ISD officials released a statement saying, "There was a situation at school in which a student was out of control. The situation was of such concern, that there were teachers, teacher assistants, and administrators that were injured due to the behavior. The options for the school district to control a child are limited. Restraint is one of them."

School officials said that Adam was handcuffed for just a brief period -- about two to three minutes -- and that the district does not use corporal punishment on special-education students.

The school suspended Adam for a day.

"(I've) questioned their ability to deal with him and they've told me that they're perfectly capable of handling a child with autism," Calvin said.

Calvin said that what she and her son experienced was fear and inexperience.

"If I go to work and I'm half-an-hour away or I'm on the other side of town, how long will they leave him handcuffed? Will he just stay in handcuffs until I can get there to pick him up? Or will they just go ahead and have them take him to jail?" she asked.

Calvin and school officials are expected to meet Tuesday to discuss whether Adam will return to school.

Copyright 2002 by ClickOnSA.com. All rights reserved.

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