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Thursday, July 2, 2009 Reader Supported |
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Call To Action! IDEA Fairness Restoration Act (H.R. 2740)
NEWS UK Sunday Times Ordered to “Remove MMR Journalist’s Stories" . . .on Dr. Wakefield from Paper’s Web Site Work by Reporter Brian Deer is at Center of Investigation Being Conducted by Medical Regulators is.gd/1lHSs The Press Complaints Commission (PCC) of London, an independent body that oversees journalism fairness in the UK, has issued an interim order calling for the Sunday Times to remove stories written by Brian Deer about Dr. Andrew Wakefield from its web site. Dr. Wakefield had filed an extensive complaint with the PCC regarding errors of fact in Deer’s reportage on the MMR vaccine and its possible relationship to autism. The General Medical Council (GMC) in the UK is presently hearing evidence involving Dr. Wakefield and two of his colleagues following a complaint to the GMC by Deer himself. The PCC decision today appears to indicate there are questions about the accuracy of the Deer stories. The PCC complaint by Dr. Wakefield provides clear evidence that Deer’s allegations of “data fixing” by him are false. The complaint also accused Deer of an undisclosed conflict of interest since Deer also failed to reveal in his articles that he was the person who made the original complaint to the GMC, misleading the newspaper’s readers over the accuracy of his reporting. “Given the ongoing nature of the dispute,” Stephen Abell of the PCC wrote, “the articles should be removed from the newspaper’s website until this matter has been concluded. This would not be an admission of any liability on the part of the newspaper." Although media are expected to respond promptly to complaints through an informal process, the Sunday Times took more than three months to answer detailed issues raised by Dr. Wakefield, and called upon legal representation to write the paper’s response. Despite this the paper’s management have failed to produce any evidence of “data fixing” by Dr. Wakefield. In its letter to Dr. Wakefield regarding his complaint against Deer, the PCC “expressed concern at the initial slowness of the newspaper’s response.” The PCC said it delayed a complete ruling until it has a fuller accounting of all information submitted to the GMC, but that the outcome of the GMC hearing is notrelevant to a final decision by the PCC. “My contention has always been,” Dr. Wakefield explained, “And it always will be that journalism, before it is published, must stand on its merits with good documentation, sources, and corroboration. Deer’s stories fail on every count. I see no connection between the GMC’s hearing and a decision by the PCC. If the Sunday Times cannot defend the information today, which it can’t, then it was unable to do so at the time of publication." Wakefield has been one of the subjects of the longest GMC hearing in history. Although the hearing was expected to be concluded in August 2009, information from attorneys involved in presenting evidence indicate the case is not likely to be decided upon by the panel until December and may not conclude until early 2010. DO SOMETHING ABOUT
AUTISM NOW
 . . . Read, then Forward the Schafer Autism Report. $35 for 1 year - or free! www.sarnet.org • • • RESEARCH Problem Pregnancy 'Autism Risk' news.bbc.co.uk/2/hi/health/8126574.stm Complications during pregnancy and giving birth later in life may increase the risk of having a child with autism, a review of dozens of studies suggests. Researchers found the bulk of studies into maternal age and autism suggest the risk increases with age, and that fathers' age may play a role too. The mothers of autistic children were also more likely to have suffered diabetes or bleeding during pregnancy. The US review of 40 studies appears in the British Journal of Psychiatry. The recorded number of children with autism has risen exponentially in the past 30 years but experts say this is largely due to improved detection and diagnosis, as well as a broadening of the criteria. The cause of the condition is unclear, and the review team from the Harvard School of Public Health said there was "insufficient evidence" to point to any one prenatal factor as being significant. Sperm mutations They did however note that nine out of 13 studies suggested an increased risk for older mothers, a demographic group which has grown in the last three decades. This ranged from a risk 27% higher for those aged between 30-34 compared to those aged 25-29, and over 100% higher for those over 40 compared to those under 30. For fathers, every five years increased the chances of a child with autism by nearly 4%. The biological reasons for why this may be are unclear, but the researchers speculated that potential chromosomal abnormalities in the eggs of older women and mutations in the sperm of older men may be a factor. Gestational diabetes - which affects four in 100 pregnancies - was associated with a two-fold increase in the risk of autism, while bleeding in pregnancy was alleged to carry an 81% increased risk. However, the team noted that there was little information given about when in pregnancy bleeding occurred. Common and often inconsequential in early pregnancy, later on it can signify serious problems. Such bleeding may deprive the baby of oxygen - a condition known as fetal hypoxia - and this is turn impacts upon the developing brain, potentially raising the risk of autism. The team also found associations with medication use, with a particularly strong link with drugs for psychiatric problems. However, they acknowledged it was impossible to tell whether this was a result of the medication itself or the genetic traits which may be shared between autism and conditions requiring such treatment. Working together Researchers said the key challenge was to work out how genetics and the environment interacted with each other to produce autism. "The rising prevalence, coupled with the severe emotional and financial impact on the families, underscores the need for large, prospective, population-based studies with the goal of elucidating the modifiable risk factors, particularly those during the prenatal period," wrote lead author Hannah Gardner. "Future investigations of prenatal exposures should also collect DNA to study potential gene-environment interactions." Richard Mills of Research Autism said such reviews of existing studies were "very useful indeed". "Age is a very interesting line of inquiry, but it is very hard to tease out one clear factor. It is like trying to complete a huge jigsaw puzzle - we still just don't know how all the pieces fit together." • • • FINANCES Autism Patients' Treatment Is Denied Illegally, Group Says Consumer Watchdog asks a judge to order the state Department of Managed Health Care to require insurers to cover prescribed treatments, including a high-cost therapy that insurers have disqualified. By Lisa Girion, LA Times. is.gd/1lImQ State regulators are violating mental health and other laws by allowing health insurers to deny effective treatment for children with autism, consumer advocates contend. In a lawsuit, Consumer Watchdog, a Santa Monica group that monitors insurance practices, is asking a judge to order the Department of Managed Health Care to require insurers to provide autistic members with the services their physicians have ordered. Without court action, the suit says, "California's thousands of autistic children and their families will continue to suffer." The department said it was "holding health plans accountable to provide a range of healthcare services for those with autism" and was handling consumer complaints according to the law. Insurers also insist that they are following the law and reimbursing policyholders for most autism care. The dispute centers on certain kinds of expensive therapy and whether a 1999 law requires insurers to pay for them. Autism impairs communication and socialization and is often accompanied by repetitive, injurious behavior. Insurers have long declined to pay for a variety of behavior-modification therapies, such as applied behavior analysis, because of the expense -- as much as $70,000 a year per child. More than 37,000 children with the most severe cases receive services, such as applied behavior analysis, through the state. Because the state's limited budget for such children is rationed according to the neediest, thousands more suffer debilitating problems but are ineligible for state aid. Applied behavior analysis involves a trained therapist working individually with a child for up to 40 hours a week. The therapist teaches skills, such as feeding oneself, by breaking them down into small steps and drilling them with positive reinforcement. The battle over autism treatment is at least a decade old. In 1999, in response to widespread outrage over insurers' refusal to cover such needs, the state Legislature adopted the Mental Health Parity Act. The law requires insurers to cover care for mental and behavioral problems at the same level as they do for physical illnesses. Still, insurers continued to avoid paying for applied behavior analysis -- one of the most expensive autism therapies -- by denying requests on the grounds that it hadn't been proved effective. Families complained to the Department of Managed Health Care, which submitted the disputes to independent medical review panels. These panels, composed of physicians working anonymously, review paperwork and issue individual, binding decisions. Over the last two years, as the medical literature on the effectiveness of applied behavior analysis advanced, these independent review panels have decided every case in favor of the families seeking treatment. As a result, insurers, including Kaiser Permanente, were required to pay for the treatment. Last year, however, Kaiser and other insurers, in letters and presentations to the department, urged it to change the way it handled such disputes and suggested that they no longer be sent first to the independent review panels. + Read more: is.gd/1lImQ • • • People With Disabilities Caught In Middle Of Budget Fight By Terry Bibo of the Journal Star, IL, is.gd/1lLuP Even though their lives may be upended by wrangling legislators, Joseph Behrens and Daniel Cronin can't protest budget cuts: They can't speak. But they do have parents willing to speak for them. "We're just caught in the middle," said Charlotte Cronin, Daniel's mother. ". . .The battle is about people with disabilities. This is front page news: We're going to make people homeless." At least Cronin and Behrens have parents in the fight. Roughly 25 percent of the developmentally disabled clients at PARC have no family at all. And given some of the profound disabilities involved, even those who have families rely on a social service net that may unravel rapidly on July 1. "There's nowhere for these individuals to go," PARC executive director Roy Ricketts said Wednesday. "It's the families that will be affected the most." PARC has more than 300 employees and serves more than 600 individuals and their families. Proposed cuts include $346,000 to residential care, $212,000 to family support, $160,000 for dental services, $253,000 for home-based support and a 40 percent cut for children and adults that would mean another $3.8 million. Altogether, the state proposes to slash almost $5 million from the roughly $10 million it sends PARC each year. That is the bulk of a $13 million annual budget, and the state compares poorly to the rest of the country as it is. "Illinois ranks last in the United States already in reimbursement rates for services like ours," Ricketts said. "I say that only because when you're starting in last place, it's pretty hard to go backwards." Then again, PARC is operating on a $1 million line of credit. The state owes it $3.3 million. "Obviously, that's a bigger dent than we can fill," Ricketts said, adding that PARC cannot continue this way. Even from the straight dollars and cents budget standpoint, Cronin said, some of these budget cuts don't make sense. Millions of dollars in federal match money could be lost. + Read more: is.gd/1lLuP • • • EDUCATION Stimulus Boosts Spec. Ed. Program for Infants, Toddlers By Christina A. Samuels Edweek.org. is.gd/1lLSH The federal economic-stimulus package’s $12.2 billion in funding for special education has been cheered as a way to offer financial breathing room for cash-strapped states. But for the part of the federal special education program that provides programs for the youngest children, the stimulus gave more than breathing room: It provided a chance for survival. The better-known Part B of the Individuals with Disabilities Education Act provides for services for students ages 3-21. Most students are covered under that part of the law, and it receives by far the largest amount of federal dollars allotted to special education. Part B is also an entitlement program, available to all eligible students by law. Part C of the IDEA by contrast, is optional. It provides money to states so they can provide coordinated services for infants and toddlers with developmental delays and disabilities and their families. Without the money provided by the American Recovery and Reinvestment Act, early-childhood advocates say some states were seriously considering withdrawing from the Part C program altogether, despite an abundance of research that stresses the importance of early intervention for children with disabilities and delays. “There was serious concern that without ARRA money, some states would not have been able to participate in Part C in 2009-10,” said Susan Maude, the president of the Division for Early Childhood of the Arlington, Va.-based Council for Exceptional Children. + Read more: is.gd/1lLSH • • • PEOPLE Another Resignation At Autism Speaks By Claudia Kalb, Newsweek is.gd/1lFIq It’s another resignation for Autism Speaks, the largest autism research and advocacy group in the country. In January, Alison Singer, then executive vice president of communications and awareness, quit the group, saying she could no longer support the organization’s investment in vaccine research. This week, Dr. Eric London, a member of Autism Speaks’s Scientific Affairs Committee, follows in her footsteps. In his letter of resignation, London said that Autism Speaks’s argument that “there might be rare cases of ‘biologically-plausible’ vaccine involvement…are misleading and disingenuous.” He goes on to charge the organization with “adversely impacting” autism research. The longstanding vaccine-autism debate has focused largely on a subset of parents, who believe immunizations triggered their children’s autism, and scientists, whose studies show the shots are not to blame. Now the controversy is morphing into an organizational rivalry. In April, Singer formed a new research group, The Autism Science Foundation (ASF); its board of directors includes Dr. Paul Offit, whose book, Autism’s False Prophets (Columbia University Press, 2008) slams what he calls the “bad science” around claims of an autism-vaccine link. Singer says the Foundation, whose first major fundraising event is planned for May 2010, is focused on genetic research, treatments and support services; it will not devote any dollars to vaccine research. London’s wife is co-founder of the Autism Science Foundation, and London himself has been a member of its Scientific Advisory Board since it was launched. It was ASF that announced London’s resignation this week, posting his letter prominently on their website. Clearly, ASF wants to make its differences known and build its brand. Autism Speaks, which has awarded millions of dollars in research grants, isn’t making a big deal of the news. In a statement to NEWSWEEK, the organization said: “Autism Speaks is currently pursuing a broad program of research, including studies on both genetic and environmental risk factors and the development of new treatments. We believe that our broad agenda will ultimately provide answers to the cause and treatment of autism spectrum disorders. We wish Dr. London well in his new endeavor." • • • Teacher Burned Boy's Butt, Cops Say is.gd/1lEHw Allen, Texas - A former teacher at Allen’s Lowery Freshman Center faces formal charges for allegedly burning a 14-year-old mentally disabled boy on the buttocks with a cooking pan. A Collin County grand jury indicted 45-year-old Susanne Means earlier this month on injury to a child charges. Police said Means was a special education teacher at the freshman center in March when the incident allegedly happened. The mentally disabled boy’s father told police his son had two 12-inch circular “scald” marks on his buttocks. The boy said Means had burned him with a hot pan, according to the arrest warrant affidavit. Means denied hurting the boy, but police said cookware that could have caused the burn marks was found in a kitchen in her classroom. The affidavit also states she failed a polygraph test. Means resigned from the school district earlier this month. • • • RESOURCES Special Adults Greener Earth Farm Prototype Set to Take Root Developers seek land donation to create first location Last summer, I first wrote about SAGE for the e-newsletter ("Special Adults Greener Earth"). SAGE, started by a group of Massachusetts parents including me, aims to provide a safe and meaningful future on a farm for our autistic adult offspring. You can see for yourself what we envision in a ten-minute, narrated video, now on YouTube. Simply go to youtube.com and type in SAGE Crossing. In the video, our children are working serenely and purposefully at Littlefield Farm in Boxborough, MA. The video is perhaps just as noteworthy for what it doesn't show: the kind of frustration and challenging behaviors sometimes associated with this population. We believe that the film suggests how successful the therapeutic farmstead model might be for some autistic adults. We are still seeking a land donation to start the first SAGE Crossing Farm, which we hope will be a prototype that could be replicated throughout the country. If you would like to keep abreast of our progress by joining our mailing list or making a tax-exempt donation, please visit the Sage Crossing website is.gd/1lIyQ. - Harriet Barnett Secretary, and Secretary of the Board - Sage Crossing Foundation • • • TREATMENT Vision Therapy Draws Fans, Skeptics By Gayle Worland, madison.com is.gd/1lU9s Trying to learn to read in first grade, Dylan Dresen of Madison tilted his head, covered up one eye — and struggled. He worked with reading specialists, saw an optometrist and visited an ophthalmologist. “He had several good reading teachers and tutors,” said his mother, Lori Dresen. “We knew he was smart but it was just not working." Two years later, Dylan’s mom decided to try vision therapy — sometimes referred to as “physical therapy for the eyes” — even though the effectiveness of it is disputed by some in the medical community. She and her son began a weekly commute to Brookfield or Watertown for 45-minute sessions to master exercises in focusing and eye-tracking designed to help the eyes and the brain work better together. Every night, Dylan would repeat the exercises at home. Now, more than a year since he completed nine months of vision therapy, Dylan, 10, “is a much happier kid, and more confident,” his mother said. “He can see things — they’re not blurry. He doesn’t have to tilt his head. He doesn’t get headaches.” He even got rid of his glasses. “I think it’s really important for people to know that there’s options for kids struggling to read,” she said. “He’s doing so much better now since the vision therapy. I wish we had known about it when he was in kindergarten or first grade." The Madison area is home to two new clinics specializing in vision therapy: the Brookfield-based Vision Therapy Center, which opened a Madison office in April, and New Horizons Vision Therapy in Waunakee. Both are run by licensed optometrists specialized in developmental optometry, which differentiates between “sight” — the ability to see clearly — and “vision” — the ability of both eyes to work together, sending information to the brain so it can be organized and given meaning. “There’s only about eight (optometrists) in the state who specialize in vision therapy,” said Valerie Frazer of New Horizons, who sees patients ranging in age from six months to 80. + Read more: is.gd/1lU9s • • • LETTERS Give Them The Freedom They Deserve In 1776, the founders of this great United States of America fought and died to give us the freedom we sometimes take for granted: The freedom to speak and write the truth as we know it. The freedom to assemble. The freedom to worship a Creator greater than ourselves. The right to life, liberty and the pursuit of happiness. This Oct. 2-4, 2009 in our nation's Capitol, Stand Up and Be Counted for the right to informed consent, the freedom to choose which vaccines you want for yourself and your children. Empower yourself with information from leading scientists, doctors, bioethicists, legal experts, health freedom and human rights advocates. Come and work with others in your state. Learn how to take a stand for the right to say "YES" or "NO" to using experimental swine flu vaccines coming soon to your community. Spread the word. Download and share the Conference banner and posters is.gd/1lI6t with your friends. Post them on a blog, website, local bulletin board or your email signature. Watch the Conference Video is.gd/1lI32 and share it with your friends! - Barbara Loe Fisher, Co-founder & President NVIC • • • Autism Seizure Treatment Survey Now Online – Parents Urged to Provide Data Survey aims to assess treatment efficacy and possible side effects In January 2009 ARI held a think tank on seizures, and in May 2009 Autism One held a related think tank on seizures. As a follow-up to those, Dr. Richard Frye is working with the attendees on a Consensus Paper on Seizures in Autism and How to Treat Them. If your son/daughter (or you) suffers from seizures, we ask you to fill out a survey form created by Dr. Richard Frye with the help of Prof. James Adams, Science Coordinator of ARI/Defeat Autism Now. We think that this very detailed form will provide a much richer understanding of the efficacy and possible side effects of current treatments for seizures. Please help us by filling out the survey form if it applies to you, and also by forwarding information about this survey to other autism groups. The purpose is to better understand seizures in individuals with autism spectrum disorders. The survey should take 5-20 minutes to complete, depending on the number of seizure treatments you have tried. The form asks questions regarding types of seizures you have observed, whether seizures have seasonal variations or vary when allergies flare, and specific questions regarding medications you have used and their efficacy. If you have more than one child with seizures, please fill out the form for each child. Complete the Seizure Treatment Survey Online: is.gd/1lJgZ - Richard E. Frye, M.D., Ph.D., F.A.A.P. Assistant Professor of Pediatrics and Neurology University of Texas-Houston - James B. Adams, Ph.D. Professor, Arizona State University autism.asu.edu Science Coordinator, Autism Research Institute/Defeat Autism Now! Today's SAR newslist is human compiled and provided through the support of paid subscription readers. - THANK YOU - |
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Copyright Notice: The above items are copyright protected. They are for our readers' personal education or research purposes only and provided at their request. Articles may not be further reprinted or used commercially without consent from the copyright holders. To find the copyright holders, follow the referenced website link provided at the beginning of each item. |
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Vol. 13 No. 68
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