Schafer Autism Report June 11, 2003

Return to Vaccination News Home Page

Subscribe to the Vaccination NewsLetter

View past & current Scandals (columns by Sandy Mintz)

Ban on Mercury Amalgam Recommended by Swedish Commission Advocates Urge U.S. Government to Protect Children, Pregnant Women from Mercury

Stockholm, Sweden, - Newswire - The Swedish Dental Material Commission released a report last week recommending that dental mercury amalgam be banned. Advocates applauded the Swedish Commission's advice and urged the US government to review the safety of amalgam, especially for pregnant women and children.

“This is the first step of a worldwide movement to stop poisoning people and the planet with dental mercury, especially since there are safer alternatives readily available,” said Michael Bender, director of the Mercury Policy Project.

The Swedish Commission tasked Professor Emeritus Maths Berlin with giving an updated risk analysis in environmental medical terms on mercury in dental fillings, based on an overview of scientific literature published in 1997-2002 and current knowledge. Berlin had previously led two World Health Organization Task Groups -- one on inorganic mercury and one on methylmercury and also testified before the US Congress Subcommittee on Human Rights and Wellness on May 8, 2003.

“Congressional hearings were held in May to review the latest science on dental mercury risks,” said Charlie Brown of Consumers for Dental Choice. “Once the truth gets out, no on is going to tolerate mercury fillings in pregnant women and children.”

After the Commission presented their recommendations to the Swedish Minister of Social Welfare, newspaper headlines across Sweden and Norway conveyed the story:

The Swedish newspaper Dagens Nyheter wrote “Amalgam can cause ill health. That is the unanimous conclusion of the study delivered on Tuesday to the Minister of Social Welfare Lars Engqvist. The Dental Materials Commission recommends that the government and Parliament speed up efforts to remove mercury-containing amalgam from dental care.”

The Swedish Commission included representatives from the Swedish Dental Association, the dental schools, the Swedish National Board of Health and Welfare, and the Swedish Association of Dental Mercury Patients. The 557-page report contains analysis and recommendations to increase knowledge about health problems related to amalgam and other dental materials, and to improve the care given to patients with such problems.

The components in dental restorative materials such as amalgam -- also known as silver fillings -- may, in rare instances, result in side-effects or allergic reactions, South African Dental Association (SADA) said on Tuesday. SADA was responding to recent reports focusing on the alleged toxicity of dental amalgam.

The California parents of an autistic six-year-old recently sued the American Dental Association alleging mercury in the mother's nine fillings caused her son's autism.

SADA's executive director Neil Campbell said a small amount of mercury was released from amalgam restorations, especially during placement and removal.

“The risk of adverse side-effects is very low for all types of dental restorative materials, including amalgam and all resin-based materials.

“Patients experiencing different physical symptoms may request the removal of amalgam restorations because of their fear of possible adverse effects of mercury,” he said.

There was nothing, however, in scientific literature indicating that general physical symptoms may be relieved by replacement of the dental restorations, he said.

“Although there is no evidence that the use of amalgam is hazardous to patients, a health risk of mercury exposure to dentists and other oral health personnel exists if the material is not properly handled.”

Campbell said dental amalgam was frequently used material for restoring decayed teeth.

“Its main advantages include wide indications for use, ease of handling and excellent physical properties.

“It has been used in dentistry with good results for more than a century. The quality of dental amalgam has been vastly improved during the last 20 years.”

SADA said its views were corroborated by that of the World Health Organisation (WHO) and the International Dental Federation (FDI).

The media love a maverick. That's one reason why a figure such as Dr Andrew Wakefield, who challenged established thinking over the measles, mumps, and rubella (MMR) vaccine, has received so much coverage in the British press. But although some newspapers have presented Wakefield as a popular hero, fighting scientific officialdom on behalf of parents worried about autism, nearly half of the public believes that journalists should have subjected his claims to more scrutiny before reporting them.

A study of what and how people learn about science from the media discovered that 48% of the public felt that when scientists go against the grain, as Wakefield did in suggesting a link between MMR and autism, the media should wait until other studies confirm those findings before covering them. Thirty-four per cent of the survey sample of more than 1000 people thought that the media should give such scientists prominent coverage and 18% expressed no opinion.

The public's reticence might seem “odd,” particularly since MMR “does not involve issues of privacy, and since such work may already be in the public domain through publication in reputable journals,” say the researchers from Cardiff University School of Journalism. “But it speaks to the degree to which many people feel the need for expert guidance on scientific issues.”

The researchers analysed the way in which science and science related issues were reported on television news, radio news, and in the press during seven and a half months in 2002. They also used two nationwide surveys (using representative samples of more than 1000 people), carried out in April and October 2002, which tracked the public's knowledge, opinion, and understanding of science related issues reported in the media. The focus of their attention was on climate change, the MMR controversy, and cloning and genetic medical research.

Their report, Towards a Better Map: Science, the Public and the Media, published last month, found that what people knew usually corresponded with those aspects of a story that received most persistent coverage. “The details or subtleties of media coverage are, in this respect, much less important than the general themes of that coverage, in which certain ideas are repeated and associated with one another,” says the report. MMR and autism is one example of such repetition and association. “While this does mean some information is communicated effectively to most people, it can also result in widespread misunderstanding—even if the reporting itself is generally accurate.”

In the case of MMR and autism, people were also misled by the journalistic quest for balance in reporting. The researchers say, “We discovered that the coverage was unintentionally misleading in creating the impression that the evidence for the link was as substantial as the evidence against it.” This is a finding that also emerged in preliminary results released last September ( BMJ 2002;325: 603[Free Full Text]). Only 30% in the April survey and 23% in the October survey were aware that the bulk of the evidence favoured supporters of the MMR vaccine.

The researchers found that Wakefield's claims—of a speculative link between the MMR vaccine and autism, “with questionable scientific data to support it”—were not “comprehensively or systematically challenged in media coverage.” Instead, the media leapt to the speculative link, and then, because the risks of non-vaccination were fairly clear, the idea of offering three single jabs gained a great deal of currency. This put government and scientists supporting MMR on the defensive, and pitched them against the notion of parental choice. “This created a serious difficulty for the scientists and health professionals, who are only able to propose dry generalisations against the more emotive and sympathetic figures of parents concerned for the welfare of their children,” says the report.

The researchers say that “while Wakefield's claims are of legitimate public interest, our report does give credence to the view that research questioning the safety of something that is widely used should be approached with caution, both by scientists publishing that research and journalists covering it.” They add, “This is especially the case if any decline in public confidence has negative consequences for public health.”

This does pose a difficulty for journalists, however, and for non-specialist reporters in particular: how to distinguish an MMR from a thalidomide. Sometimes, it seems, the public wants them to raise the alarm and sometimes it doesn't. And sometimes there is simply just no alarm for them to raise.

Her son Matthew, 3, has severe autism. He is non-verbal, only communicates by screams and has many aggressive behaviours, including pushing, hitting, and scratching. Matthew must be carried when outside because there is the danger he will run into traffic. But he is starting to get heavy in his mother’s arms.

Kicked out of his day care recently, Matthew’s violent tendencies have increased.

Lori is waiting for help. Her son has been on a waiting list for Intensive Behavioural Intervention (IBI) treatment for six months. Time is ticking because the province only funds IBI until age six.

“He probably needs quite a few years of treatment,” Phillips said. “If there wasn’t a cut off, it would be a little less of an issue.”

Phillips was one of four Sudbury mothers with autistic sons gathered at a news conference organized by NDP health critic Shelley Martel, Friday morning.

Martel is calling for the government to recognize IBI as a “medically necessary service” for children with autism and to continue funding the treatment beyond age six.

Right now, the treatment is not funded through OHIP, but through a special program run by the Ministry of Community, Family and Children’s Services.

“While it does not work for every child it appears to be very effective in helping the majority,” she said.

IBI approaches the children as if they have a brain injury, teaching them through intense repetition and one-on-one work, in an attempt to create new pathways in the brain.

But the waiting lists are long for this time-sensitive treatment approach. Currently there are 800 children in Ontario waiting for IBI and of that number about 20 live in Sudbury.

“The Ontario Ombudsman Clare Lewis has undertaken a special investigation because of the waiting lists for IBI treatments,” Martel said.

Many families are paying out of their own pockets for the treatment, but most can’t afford the price. One year’s worth of IBI treatments (about 30 hours a week) costs around $50,000. One family in southern Ontario is in the process of selling their home to pay for it, Martel said.

Rather than try to fund the IBI treatment themselves, many families are turning to the courts to effect change. Twenty-nine Ontario families are in the midst of a charter challenge to get the government to fund IBI beyond age six. Another 80 have filed human rights complaints, arguing the policy discriminates against their children on the basis of age. One southern Ontario family has successfully won a court decision to have the province continue funding the treatment. Recently, an Ontario court disallowed the government’s attempt to appeal that lower court ruling. However, the case was not precedent-setting and only applies to that child.

The Ministry of Community, Family and Children’s Services’ Web site explains why children only receive the treatment up to the age of six : “Research indicates that intensive intervention services are most effective when initiated early in a child’s life.”

However, the government has yet to produce this research at a trial, Martel said. Like most treatments, it is most effective when administered early. But there is no reason to give up on the older kids.

Susan Cindric, a widow and mother of two, had her oldest in IBI for one year before he was cut off. He’s now integrated in a regular class; enjoying it and able to read and write. However, before IBI, Cindric’s son would not have been able to eat lunch in the school’s cafeteria because he was terrified of noises and strangers.

“The gains were tremendous during that year. He would have definitely benefited from more,” she said. “It is a treatment supervised by a psychologist. Why don’t they fund it through OHIP? They’re only going to have to spend more on him later.”

Also at the news conference on Friday was four-year-old Liam Kitching. The boy did not pause once during the hour, flying his Harry Potter figurine around the room, spinning and occasionally pulling on his mother’s arm for her to join him.

At one point, Trish Kitching, a mother of three, thought her son was deaf. She’d clap her hands right beside his ear but wouldn’t get a reaction. If she held a book close to his face, he’d look away, refusing to focus on it. Liam makes little eye contact and when frustrated, bangs his head against any surface. The diagnosis of severe autism came this January.

She’s hoping he’ll start IBI this summer, but still has no commitment in writing.

“The government should spend a day in my home,” Trish said. “It’s cheaper to spend the money now.”

Huge Increase In The Prevalence Of Autism Is Being Reported Worldwide Announcement of Toronto Autism Conference - June 21 & 22, 2003

An unexplained huge increase in the prevalence of Autism is being reported, in Canada, the U.S., U.K., Middle East and Asia.

Autistic Spectrum Disorder has become more common than childhood cancer and childhood diabetes, and is putting enormous demands on our health and educational system.

Autism varies a great deal in severity. Some individuals are mildly affected and may exhibit slight delays in language and mild difficulties with social interaction. Others, with more severe autism, may have no speech and exhibit self-injurious and aggressive behaviour.

The symptoms of Autism can be greatly reduced by early diagnosis and treatment. Early identification and treatment is key to helping these children.

The Autism Canada Foundation (http://www.autismcanada.org) have recently organized a powerful training workshop for parents, physicians, ABA therapists, speech pathologists, occupational therapists, and other members of the medical community. Dr. Jeff Bradstreet, M.D., F.A.A.F.P., will host the workshop along with his colleague Dr. Jerry Kartzinel, M.D., of the Florida based International Child Development and Resource Center (ICDRC).

This one-of-a-kind workshop will teach how to integrate medical, behavioural and nutritional treatment options for children with Autism, PDD and related disorders. Successful intervention techniques the ICDRC are using to bring real hope to the 1,600 children they treat worldwide.

Location: Ryerson University, Learning Resources Centre, Library Lecture Theatre (L72) 350 Victoria Street Toronto, Ontario, Saturday June 21 & Sunday June 22, 2003 To register: (905) 332-4766 or http://www.autismcanada.org

The 10-year-old girl welcomed Buddy, a three-year-old chocolate Labrador, into her life a few days ago, and the duo have already forged a special bond.

Upon arriving at the Hoppins home, Buddy immediately went to Leigh, somehow sensing that she was his project.

“He’s like her little guardian dog — he goes into her room and sleeps with her at night,” said Cathie Hoppins, Leigh’s mom.

Leigh was diagnosed at age four with Asperger Syndrome, a highly functional form of autism. She lacks social skills, has repetitive behaviour, and sometimes displays severe aggressive outbursts, said her mom.

Buddy will be Leigh’s special companion and a safety anchor should she try and stray away from him.

“The number 1 thing is safety,” said Cathie. “But the ultimate goal is for her to have her independence. He’s just so gentle the way he watches over her.”

Cathie said she already sees changes in her daughter, a Birchview Dunes elementary school student.

“She’s a lot calmer now, and is really excited when she gets home from school,” said Cathie. “To have him here when she gets home is a big deal. She just loves him.”

“We’re really surprised about how well he’s adjusted into our family, considering how much he’s moved around in recent months (with training courses),” Cathie said.

After applying to get a National Service Dog in March of 2002, the Hoppins family held various fund-raisers in the fall to purchase the $8,000 specially-trained canine. Many service and community groups approached the family with financial assistance.

“We couldn’t have done this without this community,” Cathie said. “It was great the way they pulled it all together.”

Buddy was trained at a facility in New Hamburg, near Kitchener. Blaine and Cathie Hoppins did a week’s worth of training there to learn various commands and familiarize themselves with Buddy. Part of Buddy’s training included sitting in a busy mall with a hamburger in front of his nose.

There’s one more step for Buddy to overcome. The Hoppins will take him into high-traffic communities for his Public Access Test in a few days. If he passes, his training will be complete and Leigh will be tethered to him in public using a waist harness.

Buddy, who will retire around 10 years old, is outfitted with a purple jacket when he’s on the job. Cathie said his demeanour changes significantly when he dons that jacket, although he still has his playful side.

A teenage boy, who has a form of autism, reported his bike missing two weeks ago. News of his stolen prized bike caused a generous donor to step forward, to replace the bike that meant so much. Joey Machen got the surprise of his life when he stepped off the bus and found a new bike waiting for him.

Last month, Joey's prized Zephyr bike went missing from the family's Idaho Falls yard. Ever since, Joey's mom says her son has not been the same. Natalie Machen, happy for son’s gift:

“There is somebody special out there, that understood what it meant to have a handicapped child and how important it is for them to have their special things.”

The family wishes to thank the anonymous donor, and others who offered to help replace the stolen bike.

In a new book, “The Ride Together: A Brother and Sister's Memoir of Autism in the Family,” Paul and Judy Karasik tell the story of growing up in a tall Victorian house in Chevy Chase, Md., with their parents and two brothers, Michael and David. David, the oldest, is autistic and mildly retarded, and the book follows him as he grows from infancy to middle age. (He is now in his 50's and lives in a group home near Washington.) Excerpts follow; the first is set in 1960, the second in 1966. Judy Karasik narrates; the cartoons are by Paul Karasik [See cartoon at the provided URL above.]

Michael opened up the door to the toy furnace and blew out the ghostly fire hovering over the small white bricks of solid fuel. He turned a lever, steam hissed out from the water tank, the shiny silver pistons reduced their pace, and the engine's wheel stopped its spinning.

“What are you talking about?” he asked. “Look at the wheel slow down, Judy,” said Paul, whose mind had remained on the steam engine.

“Huh?” Michael asked, puzzled. “Oh yeah,” he said, as his brain stretched around to include my way of seeing things. He pulled open the door to the furnace, lit another match, and reached in to reignite the cube.

The fuel took. Trembling smoke-shaped flames chased one another along the brick's length.

“It's not fair,” I said. “It's always like this. We get one set of rules but he gets another.”

David didn't have to make his bed, rake leaves or clear the table. He interrupted. He had his shows. He ate more cookies than anybody else. It wasn't right and we had done nothing — just sat there and watched — while first Mommy, then Daddy, then Mommy again, made exceptions for David.

“Fairness is important,” I said. “Michael, here's this huge unfairness, right in the middle of everything. Every day.”

Paul turned his attention away from the engine for a moment. “It has to be fair,” he said.

Michael shook his head. “Judy, it is not a big deal. You make such a big deal out of stuff.” . . .

“So go ask them, that's O.K.,” Michael replied, increasingly annoyed. “I'm busy.” . . .

Mom turned her attention to me and said, in a matter-of-fact way: “Well, Judy, David gets some things easier because a lot of ordinary things are harder for him. Getting through the day is harder for David than it is for the rest of us.”

In February the Marine Corps Marathon™ invited to the Organization for Autism Research (OAR) to participate as a 2003 ‘Charity Partner’. Since then OAR has been laying the groundwork for the first Run For Autism to be held in conjunction with this prestigious and popular race held in Washington, DC, each fall. “Being a Charity Partner will enable OAR to create an event that will generate excitement as well as autism awareness across the country. We are honored to be the first autism group to participate in this special marathon. Having guaranteed entries helps attract runners. We’re already halfway to our goal of 100 runners.” noted Mike Maloney, OAR’s Executive Director.

OAR has crafted its Run For Autism within the broader Marathon. Ideally, runners from across the country will team with local autism organizations to help increase general autism awareness, highlight the need for more funding for autism research, and publicize local autism services, initiatives and issues.

The run will take place on Sunday, Oct. 26, 2003. It typically attracts some 16,000 runners and 70,000 spectators. Often referred to as the “People's Marathon,” the run draws many first-time marathoners as well as more experienced runners. It welcomes novice runners and very generously gives worthy charities the opportunity to raise funds.

OAR's goals for the Run For Autism are to have a total of 100 Runners for Autism in the Marine Corps Marathon or its associated 5K run and among

runners signed up representing 14 states and the District of Columbia. Each will strive to raise $2,500.

“To say this is exciting for OAR is a vast understatement!” added Maloney, a 23-year veteran of the Marine Corps. “The Marine Corps Marathon™ and autism is a great match. Above all, a marathon demands courage, endurance, will and determination, qualities that parents in the autism community exhibit each day. Having 100 Runners for Autism set in the arena of the Marine Corps Marathon “and the Nation's Capital provides us with an opportunity to make a powerful, memorable, and highly visible statement about autism and the need for autism research.” Maloney said.

The Marine Corps Marathon is no longer accepting applications and selects its regular participants through a lottery, which is now complete. Except for charity partners like OAR, the race is closed. OAR expects many of the runners who were turned away to join the Run For Autism. “OAR’s spaces are limited.” Maloney said. “We are awarding them on a “first come, first served” basis, and we hope that runners and autism organizations across the country will join us.”

For information, please contact Mike Maloney or Ellen Maidman-Tanner at (703) 351-5031.

Beginning in September, psychologist Lynda Kravitz (LEkravitz@aol.com) will be forming/facilitating a support group for parents of special-needs children. The group probably will meet monthly in Oakland. Lynda, who has a special-needs child, also facilitates a support group for the Jewish Federation of the East Bay. For more information, contact Lynda at 510/420-0888.

I live in Riverside, California and am looking for experienced tutors/therapists for a early learner's 40 hour a week in home program. Training will be provided! Please e-mail me privately at Kallegal@aol.com

Looking to start an Autism support group in South Orange County, California. I am the mom 0f 7 yr old w/Autism & also work as a behavioral therapist w/Autistic children. Group would address help w/IEP's, tutors & behavioral issues. mithfx5@hotmail.com

For the second half of 2003 July thru December our television show Spotlight Autism can be seen in New York City area as follows: Wednesdays at 6:30 pm. channel 35 Saturdays at 4:30 p.m. channel 34

Working on a book with a major publisher on the possible connection between Thimerosal and autism. I am looking for families who have been affected by autism, who have members that are current or former employees of Eli Lilly Co., to be interviewed for the book. I am also looking for autism families in the Indianapolis area who might know people that are current or former employees of Lilly. I can be reached at dkirby@nyc.rr.com. Thank you very much. David Kirby

BAE Systems NA & UK employees: Is there an Autism epidemic among the children of our high tech employees? Do you think our employer could do more? I'd like to hear your ideas. douglas.shade@baesystems.com

Has there been any studies done on the impact of a pregnant woman taking a flu shot? I hope this is being looked at by some of the researchers. We often wonder if mercury exposure could have occurred before our son was born. He showed some autistic characteristics right from the beginning; followed by regression after his MMR. bbrodley@yahoo.com

I have a 6 yr old son with autism and have just had a second son. I am trying to decide whether to vaccinate my newborn son. Does anyone have any advice or protocols from other doctors? sferlmann@midstate.edu

Relocating to Dallas and would like info about schools and resources. Have a 6 year old PDD-NOS son entering 1st grade. efamga@bellsouth.net

On the “Through the Eyes of Autism” video. I can't even begin to tell you how incredible this is. It's about a 25 year old man with autism who is nonverbal and communicates through his keyboard. He was corresponding with Christine through Email and gave her great insight into how someone with autism thinks and feels. Everyone who sees this will realize that there really is a typical child in there but has no way to show it. http://lighthousestudios.info/ Jo Pike

I spoke with Dr. Mark Geier a week ago. He has anecdotal evidence linking Rh negative mothers who received RhoGam shot(s) during their pregnancy as having an extremely high number of autistic children compared to their low population numbers. The RhoGam shot has over 100 micro grams of thimerasol. He would like someone to do a study. Perhaps a Dr. that sees a large number of patients with autism, a school for autism etc. LMWeinmaster@cs.com

My 4yo daughter has mild-moderate autism. She is in a 35 hr/wk ABA program. Supervising psych thinks she would benefit from Ritalin to help her focus (behavior is ok, but is inconsistent with trials dues to her inability/unwillingness to focus on taks at hand.) I would rather make Ritalin a last result..would like to know if anyone has any experience supplementing with GABA, DMAE and zinc. Heather hearenger@yahoo.com

Return to Vaccination News Home Page

DISCLAIMER: All information, data, and material contained, presented, or provided here is for general information purposes only and is not to be construed as reflecting the knowledge or opinions of the publisher, and is not to be construed or intended as providing medical or legal advice. The decision whether or not to vaccinate is an important and complex issue and should be made by you, and you alone, in consultation with your health care provider.