SCHAFER AUTISM REPORT             “Healing Autism:

                             No Finer a Cause on the Planet”

   NOTE CALENDAR DEADLINE JUNE 25 FOR JULY UPDATE http://home.sprynet.com/~schafer/frm/calendar-form.htm

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Friday, June 20, 2003                 Vol. 7  No. 131

    TREATMENT

   * Autism Now Diagnosed Early, Therapy For Toddlers ‘Huge Difference’

    PUBLIC HEALTH

   * Study: Canned Tuna Mercury Riskier than Previously Suspected

    MUSIC

   * Matt Savage Trio on The Today Show Monday, June 23rd 8:00 AM

    LETTERS

   * Smell That Smoke

   * It’s My Theory, And I’m Sticking To It

   * On Toxic Metal Clue To Autism

TREATMENT

Autism Now Diagnosed Early Therapy For Toddlers Makes ‘Huge Difference’

      [By Kim Painter for USA Today.] http://www.usatoday.com/usatonline/20030619/5256915s.htm

      Two-year-old Nathan Katzman seemed different “from the moment he was born,” says his mom, Nicole. “Looking back, I think it was something about eye contact.”

      Dad Gary agrees: “Instead of looking at us, it was like he was looking through us.”

      The unsettling signs kept coming. “You’d call his name and get no reaction,” says Gary, a Lincoln, R.I., cardiologist. “We’d play little baby games, going ‘goo, goo, goo,’ and get no reaction.”

      When Nathan had no words, or even any babbling that resembled words, several months after his first birthday, his parents really started to worry. They thought their son might be deaf.

      Instead, he was diagnosed with autism, making him one of a growing number of autistic children diagnosed as toddlers.

      His parents hope early diagnosis and therapy will make all the difference. And experts say that it just might: “You can make a huge difference if you get there early,” says Amy Wetherby, an expert in communication disorders at Florida State University in Tallahassee.

      People with autism and related disorders, sometimes called autism spectrum disorders, or ASD, have trouble communicating, lack appropriate social skills and displayunusual, repetitive behaviors. Many are mentally retarded. But the severity and exact mix of problems vary enormously. Though some autistic children never speak or learn basic self-care, others grow up to lead independent lives.

      And because the exact nature of ASD can be hard to pinpoint in young children, many doctors have been reluctant to label toddlers. Studies suggest the average age of diagnosis in the USA has been about 3, Wetherby says.

      But that seems to be changing. One reason is that parents and pediatricians are becoming more aware of autism. At the same time, researchers are learning more about the earliest signs and gaining confidence in the value of early, intense therapies that systematically teach children everything from eye contact to play skills to conversational techniques.

      Not all children respond, but for many, the therapies can raise IQs, improve communication and social skills and lessen the need for special education. And that’s in children identified between ages 3 and 5. Researchers hope they will do even better with children found earlier.

      “Early detection means earlier access to intervention during sensitive periods of brain development,” says Rebecca Landa, a speech pathologist who leads an autism study center at the Kennedy Krieger Institute in Baltimore. The institute is one of eight centers awarded grants by the National Institutes of Health as part of a $65 million, five-year effort to address rising concerns about autism.

      While autism was once thought rare, recent government studies found ASD in three in 1,000 children around Atlanta and almost seven in 1,000 children in Brick Township, N.J. A recent California study found a doubling of childhood autism cases in only four years.

      Whether the increases are real or the product of better diagnosis is unclear.

      Whatever the case, there is no blood test or brain scan that can diagnose autism at any age. Instead, doctors must rely on behavior. And, in the past, they often didn’t know what to look for in very young children.

      That’s where the work of Landa, Wetherby and others comes in. For the past few years, Landa has been tracking a group of infants and toddlers who have siblings with autism. Previous, anecdotal reports suggest that up to 10% of these children will be autistic, too. So Landa is finding repeat cases among her subjects and collecting data on how affected children differ from unaffected children at the earliest ages.

      And Wetherby has been screening thousands of Florida toddlers, looking for telltale signs in those later diagnosed with ASD and other developmental problems. Both researchers say they now can spot virtually any child with ASD by age 2 -- some much earlier.

      How early? Though no one would diagnose a 6-month-old with autism, warning signs can appear by then, Landa says. A typical 6-month-old, she says, has a rich social repertoire. “If I make a face, they’ll laugh,” she says. “If I babble and then am quiet and let the baby know I’m just waiting, the baby will vocalize. That’s turn-taking. That’s a mini-conversation. They might not do it every time, but they should do it often.”

      A baby headed for autism, Landa says, often lacks that basic ability to connect. And there may be other signs. For example, instead of burbling and babbling with a variety of sounds, a baby in trouble may produce nothing but high-pitched squeals. By 14 months, she says, the signs can be quite clear.

      “What you really want to look for is an integrated social approach . . . eye contact, a smile, combined with some kind of social bid.” A typical child, she says, uses gestures, sounds and facial expressions to ask an adult to look at something, get something or play a game, and the child reads those cues in others. An autistic child might point, use words or make eye contact while lacking the total communication package.

      Wetherby agrees. She says she worries when any child over age 1 can’t coordinate gaze, facial expression, ges- tures and sounds into a smooth communicative approach.

      Joy and Daniel Johnson of Elkridge, Md., know the signs too well. Their 3-year-old son, James, who had speech delays and other signs, was diagnosed with autism at 28 months. Now their 18-month-old son, John, “is not talking at all,” Joy says. “And he really doesn’t have any eye contact. When you call his name, he very rarely turns around.”

      John also likes to throw toys and repeatedly open and close doors. Most distressing, says Joy, is “he doesn’t express his wants and needs in any shape or form” except crying.

      But, through Landa’s study, John was diagnosed early and already is getting speech and occupational therapy. Soon, he will begin a therapy called floor time, in which parents and therapists get down on the floor with a child and follow his lead to draw him out and get him communicating.

      Of course, most parents don’t have a top researcher monitoring their children’s development. They depend on neighborhood pediatricians, nurses and preschool teachers. And many professionals still don’t recognize early signs or appreciate the value of early treatment, say autism treatment advocates.

      “Often, parents will express a concern and they’ll hear, ‘Oh, don’t worry. . . . Einstein was a late talker,’ “ says Nancy Wiseman, president of First Signs Inc., an organization she founded to promote early identification of autism and other developmental disorders.

      Wiseman, of Merrimac, Mass., has a 7-year-old daughter who was diagnosed with ASD at 26 months and underwent intensive treatment. Sarah has some problems with attention, mood and speech, but she attends a regular first grade and is “very gregarious, very bright,” Wiseman says. Without early treatment, “my child would have been lost to me.”

      To give other families the same opportunity, Wiseman, a former corporate communications executive, has put together a kit that gives doctors tips for fitting developmental screening into busy practices. The kit also contains a video with footage of typical toddlers and those showing signs of trouble. After a trial mailing to doctors in New Jersey, Wiseman is working with health officials in Minnesota to train doctors, educators and others to recognize children at risk. She hopes to launch a nationwide campaign.

      That means that, eventually, even more parents will start their battle with autism early. They will have no guarantees of success. But they will have hope.

      Nathan, now 2, is “starting to come around a little bit,” says Gary Katzman. “Sometimes he sounds like he’s saying something.” But Nathan also still screams when he is frustrated, spins in circles to entertain himself, and bangs toy cars against the wall.

      Katzman says he fantasizes that maybe Nathan will grow up to be “just a little strange” but able to function in the world. But he also can imagine a future in which his son “never really talks and is always the way he is now, infantile.”

      “That’s what kills me,” he says. “I just have no idea.”

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PUBLIC HEALTH

Study: Canned Tuna Mercury Riskier than Previously Suspected Pregnant Women, Young Children Warned to Avoid Albacore

http://releases.usnewswire.com/GetRelease.asp?id=105-06192003

      Newswire - One of every 20 cans of “white,” or albacore, tuna should be recalled as unsafe for human consumption, according to independent testing conducted for the Mercury Policy Project, a public interest group.

      On average, the levels of mercury in the white tuna were considerably higher than the industry and government claims from outdated FDA tests, said Michael Bender, director of the project.

      “Our tests confirm what FDA has known for over a decade; white tuna has higher mercury levels,” said Bender. “Yet because FDA halted testing of canned tuna for mercury in 1998 to save money and because industry keeps its results secret, parents are unknowingly exposing their children to mercury.”

      Methylmercury -- the organic form mercury assumes in fish -- is a potent neurotoxin that poses the greatest risk to the developing fetus, infants, and young children. Data from the CDC indicates that one in 12 women of childbearing age have unsafe mercury levels, translating to over 300,000 babies born at risk each year.

      “Our sample size was admittedly small,” said Bender. “We chose 60 cans of tuna randomly off grocery shelves, had them tested by the New Age/Landmark Laboratory, Inc. and then had a portion retested by The National Food Laboratory, Inc. -- a lab used by the tuna industry -- so there is no reason to be believe that these results are not reflective of what millions of Americans consume.”

      Canned tuna is consumed in 90 percent of American households and accounts for around 20 percent of US seafood consumption. Children eat more than twice as much tuna as any other fish, and canned tuna is the most frequently consumed fish among women of child bearing age. Albacore accounts for about one-third of all canned tuna sold in the U.S. and our independent testing found that mercury levels in white canned tuna averaged over 0.5 ppm.

      “FDA’s own food safety committee recommended last year that the Agency warn pregnant women about canned tuna, but the Agency has failed to act because of undue influence by industry,” said Bender. “FDA should stop protecting the fishing industry’s profits and start protecting children from mercury.”

      How much fish a person can eat before exceeding the U.S. Environmental Protection Agency’s (EPA’s) “virtual safe limit,” called a reference dose (RfD), depends on body weight and mercury content of the fish. For

xample:  -- A 22 pound toddler eating only 2 ounces of tuna per week with a 0.5 ppm mercury concentration would have an intake over 4 times the EPA’s RfD.

      -- If a woman with a typical weight of 132 lbs eats 12 ounces of canned tuna per week (the limit advised by FDA) with a 0.5 ppm mercury concentration, she will exceed by 4 times the EPA’s RfD.

      -- An 88 pound child consuming one 6 ounce can of tuna with a 0.5 ppm mercury concentration weekly would be exposed to 3 times the EPA’s RfD standard.

      These concerns, however, pale in comparison to the risks of prenatal mercury exposure; in utero fetuses are at risk of neurological impairment from methylmercury passing through the placental barrier. Nevertheless, at their food safety committee meeting last year, FDA scientists admitted that as many as 50 percent of women in the U.S. have little or no knowledge of mercury exposure risks identified with eating fish.

      Cans of Starkist, Bumblebee, and Chicken of the Sea tuna and others were collected from Safeway, Shaw’s, and other supermarkets around the country and sent to New Age/Landmark Laboratory in Benton Harbor, Mich. Then 20 percent of the white tuna samples were retested by The National Food Laboratory Inc. in Dublin, Calif. Over six percent of the white tuna samples contained mercury at or above FDA’s outdated and unprotective action level for mercury of 1 part-per-million. On average, the 48 white tuna samples proved to have levels of mercury over four-times higher than the 12 light tuna cans tested.

      According to a tuna industry spokesperson, “extensive research” found that four percent of the tuna tested exceeded the FDA’s action level of 1 ppm. A $1 billion per year industry, the U.S. tuna industry estimates that warning women about the risks of mercury exposure in canned tuna could lead to over a 20 percent drop in sales. After meeting with the tuna industry, FDA dropped canned tuna from its consumer advisory.

      In the face of such FDA inaction, states and others are attempting to fill the void by embracing approaches that are more restrictive than the FDA’s action level. Eleven states have issued advisories warning pregnant women, nursing mothers, women of childbearing age and children to limit canned tuna consumption. Several states also warn that the “white” canned tuna contains higher mercury levels than “light” tuna.

      Most mercury pollution comes from the burning of fossil fuels in the coal-fired power plants, disposal of mercury-containing products in incinerators and landfills, mineral mining operations, industrial uses like chlorine production, and releases from dental offices. Mercury levels in the environment have increased 3-5 fold in the past century as a result of human activities and are reaching threshold levels that threaten human health and environmental security, as well as the future of the global fishing industry. Since 1996, fish has surpassed beef and poultry as the main common source of protein for billions of people in the world.

      In February 2003, the UN Governing Council found that there was sufficient adverse impacts of global mercury pollution to warrant international action.

      For more information and to review the report: http://www.mercurypolicy.org

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MUSIC

Matt Savage Trio on The Today Show Monday, June 23rd 8:00 AM

      [From Matt Savage’s promotional agent (Mom).]

      Just a quick reminder that The Matt Savage Trio will appear on The Today Show this coming Monday, June 23rd at approx. 8:00 AM. Matt will be interviewed by Katie Couric and then the band will perform live. [Matt is a child musical savant who performs jazz piano with his Trio ala Herbie Hancock. He is not able, however, to play three saxophones at once. -Editor]

Upcoming Concerts

      We have not currently scheduled any concerts for July or August, but there is a very special fundraiser in the works for July 20th in Boston, MA. Matt will be opening for one of the biggest names in folk music.  This concert will not be advertised except to newsletter subscribers.  We’ll let you know more details as they become available.

       For fall, just a few upcoming concerts to mention:

Sunday, Sept 14th - Chicago, Il

Saturday, Sept. 20th - Natick, MA

Wednesday, Oct. 1st - Manchester, NH

Monday, Nov. 3rd - New York – The Blue Note

And in the works, Friday, Nov 21st - Vienna, Austria

      Check out our web site for details. http://www.savagerecords.com/  Happy summer!

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LETTERS

Smell That Smoke

      The Harvard Mental Health Letter article on the rising rate of autism contained some good information but was Pollyanna in its optimism at several points.  The worst statement by far was the concluding sentence, “Further study should tell us whether the rise in rates is in the eyes of the beholders or represents a true increase in the number of autism cases.”

      What fools!  You wake in the night smelling smoke.  Do you wake your family or let them sleep?  After all you can’t be certain there is a fire. Perhaps your nose has become overly sensitive to the incense candle your spouse lit after dinner.  Maybe you are just dreaming.

      Even if we treated autism research like the Apollo-space-program it could take years to find the cause(s) and take preventative action. Meanwhile the explosive growth in autism will continue.  If the autism rate is doubling every 4 years (as CA data indicates) then the rate of 34 in 10,000 found by the CDC in the 1990s is probably 70 in 10,000 now.  In 8 years it would be 280 in 10,000 or one of every 35 births.

      Please, wake up and smell the smoke!

      - David Eland, Parent of a child with autism

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To the editor of the Daily Telegraph

http://opinion.telegrah.co.uk

It’s My Theory, And I’m Sticking To It

      Sir - Nobody will ever order me to have my child immunised with the MMR vaccine (report, June 14; letter, June 18).

      My fourth child was developing normally until he had the MMR injection at almost 17 months; he was beginning to talk, making eye contact, and was a smiling, happy child.

      Within 10 days, there was a sudden change: he started rocking, grinding teeth, avoiding eye contact and being perpetually unhappy. As time progressed, the symptoms developed and he lost verbal and social interaction.

      His condition took a year to diagnose, with input from a team of professionals, none of whom ever disputed with me that the vaccine could have been responsible.

      My GP was the only one who tried to convince me that the MMR and autism symptoms start at around the same time; that it is a coincidence. As an experienced nurse lecturer and mother, it would take a miracle to persuade me that MMR did not damage my son. I and my family live with this every day and I carry the guilt that I put my perfect little boy at risk.

      Of course, the Department of Health says it is safe. It is in its interest to stick by its initial decision. I believe that, for some children, the triple vaccination is too much for their immune system; it knocks them for six and they cannot fight infection.

      Whether autism is triggered by a virus I can’t be sure, but no one is able to offer me a better explanation; it’s my theory, and I’m sticking to it.

      -Nicky Coleman, Charmouth, Dorset

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On Toxic Metal Clue To Autism

      Hair measurement of the level of mercury or other toxics is not universally accepted as valid or reflective of anything useful.  With substances other than mercury, it usually does make a good ‘infomercial’. Kids with lower levels of mercury in their hair may simply have been exposed to less mercury.  The analysis presented relies on a ‘paradoxical’ approach: less mercury automatically means greater exposure.  The disparity must be explained by such things as less good metabolism or inadequate ‘clearing’, which are undemonstrated.  A cynic would say that perhaps the results show that mercury helps regular development, since the ‘normal’ kids show higher levels. Mercury is introduced by many means, not only vaccines preserved with Thimerosol.  This could include food ingested by the mother during gestation, food ingested by the child after birth, and environmental exposure both for mom and baby.

      The introductory comment:  “The “Smoking Gun” evidence of a vaccine-mercury-autism connection appears to get another shade denser.” is both misplaced and inaccurate with respect to the ‘data’ presented in the synopsis.

      All in all, the research presented could best be described as ‘sloppy’.  Good for use in alarming people but questionable respective of answering a scientific question.  If you (as a group, not you personally) have to resort to manipulation of data, fabrication, distortion, what ifs, etc., it suggests that there is no ‘there there’.  This cannot be long term helpful of the proposed cause of helping understand and remediate ‘autism’.

      -Frank J Marone, PhD, MFT, BCBA

      Editor’s Response:

      Who are you arguing against?  No one here claims causation has been established (granted, some in the media have.) And the synopsis itself is replete with caveats, warning one and all not to jump to conclusions in these matters of science. The “smoking gun” metaphor, which refers to circumstantial evidence, is a legal, not a scientific principle. There is, in some observers’ opinion, enough preponderance of such evidence to win some very large judgments against the suspected perpetrators; airtight scientific proof of causation need not be established. There is also, in some observers’ opinion, enough evidence to turn public opinion against government complacency about researching autism.  State budgets are being squeezed both by the sagging economy and in growing measure by the growth of reported autism.  If you think it’s noisy now with parents attempting to sue negligent vaccine producers, just wait until the States figure out how their coffers have been raided by the same perps and start demanding answers, if not compensation as well.

      Furthermore, in some observers’ opinion, there is enough evidence, when combined with others studies and anecdotal observations, to establish a strong enough hypothesis to warrant serious investigation. Investigation such as independent biomedical and clinical research that goes beyond the recent attempts by government public health agencies limited mostly to exculpate vaccines -- and perhaps their own complicit, iatrogenic hides.

      It is some observers’ opinion, mine included, that the government has dragged its feet on researching the cause of autism because they already know or suspect what they’ll find.  Sed quis custodiet ipsos Custodes? Who guards  the Guardians? (Another interesting legal concept.)

      -Lenny Schafer

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Lenny Schafer, Editor mailto:schafer@sprynet.com

Contributing sources:  Edward Decelie   Ron Sleith   Kay Stammers

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