In This Edition
TACA News
4. Listen, Learn & Take Action for Your Child at the Real Help Now Conference
5. TACA Autism Awareness Sunglasses from Oakley
In the News
Are you receiving TACA's regional newsletters with information on local TACA meetings and events? We can't send it to you if we don't know where you are! Please Join TACA (it's free) or update your membership to include your location. If you include your mailing address, you'll receive TACA's print newsletter, Talking Autism.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s. TACA does not engage in lobbying or other political activities.
February 2010 #1
Here is your update on TACA (Talk About Curing Autism). If you are new to our site... WELCOME! This newsletter is produced two to four times each month.
We are an autism education and support group. We want to make this e-newsletter informative for you. As always, contact us your thoughts and/or questions so we can improve it.
We focus on parent information and support, parent mentoring, dietary intervention, the latest in medical research, special education law, reviews of the latest treatments, and many other topics relating to autism. Our main goal is to build our community so we can connect, share and support each other.
Talk About Curing Autism (TACA) provides general information of interest to the autism community. The information comes from a variety of sources and TACA does not independently verify any of it. The views expressed herein are not necessarily TACA’s.
1. Find a TACA Meeting
Come to a TACA Meeting!
TACA holds monthly meetings in many locations throughout the United States that feature educational speakers on important topics and allow family members to connect with one another and stay on top of the latest information in the autism world. Each TACA group maintains a resource library of the latest autism books, CDs and DVDs that can be checked out by members at no charge.
Check out our group listings: each contains information on TACA meetings and special events as well as a contact form.
Are you wondering what happens at a TACA meeting? Watch our video.
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Come and receive some extra support or to chat all topics related to autism and meet other TACA families at these informal, monthly get-togethers.
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4. Listen, Learn & Take Action for Your Child at the Real Help Now Conference
MADISON, WI: February 27, 2010
Featuring:
Lauren Underwood, Ph.D.
Kyle Van Dyke, M.D.
Anju Usman, M.D.
Dan Rossignol, M.D.
Searching for and finding the right information to help your child can be overwhelming for families affected by autism. The Real Help Now Conference was developed to bring the latest information on medical, dietary and family issues for children with autism, and most importantly, help parents through the often daunting process of determining how to organize and prioritize their intervention efforts.
The Real Help Now Conference will provide two important tools for translating the information gained from the speakers into action for your child:
- Real Help Now Workbook with step-by-step processes to help you to determine appropriate interventions and timelines for taking action in the realms of medical and dietary intervention, education, finances and home life. (Sorry, this Workbook is only available at the conference.)
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TACA parent mentors who have been there, done that. Our experienced mentors will be on hand to to work with you one-on-one to answer your questions and share what has worked for their child.
Whether you are just starting out on the autism journey or are an experienced parent, you will learn from nationally known experts about how you can help your child at the Real Help Now Conference.
5. TACA Autism Awareness Sunglasses from Oakley
Talk about Curing Autism (TACA) is very pleased to announce the new TACA Autism Awareness glasses from Oakley. Oakley has released two unique signature glasses for both men and women. The new products available are:
• TACA Oakley Fuel Cell™ eyewear
• TACA Oakley Ravishing® eyewear
“Corporations like Oakley are a wonderful gift to TACA and the families we serve,” said TACA Executive Director Lisa Ackerman. “Oakley brings a powerful influence to foster awareness and visibility of autism, and to aid our mission to help a community in great need. We are grateful for this support, and for friends like Oakley,” Ackerman concluded.
In the past, Oakley has partnered with LIVESTRONG – Lance Armstrong Foundation and the Young Survival Coalition for breast cancer awareness. Both efforts have been very successful in awareness and fundraising for these foundations.
Both sunglasses are available at Shop TACA. You can also buy these glasses with other autism organizations and Oakley resellers through their international channel.
Read more information about the TACA & Oakley Partnership.
Buy the TACA Oakley Fuel Cell™ and TACA Oakley Ravishing® eyewear.
If you represent an autism non-profit organization and would like to sell the TACA Oakley Fuel Cell™ and TACA Oakley Ravishing® eyewear please contact Lisa Ackerman for more information.
6. Daily Autism Updates for Families
All news related to autism: For daily updates to all autism legislative issues: ChangeforAutism.org
7. The Lancet Retraction Changes Nothing
Dr. Andrew Wakefield is one of the most vilified medical practitioners of recent times, and now he carries the extremely rare dishonor of a retraction in The Lancet, on the paper he coauthored in 1998 suggesting a potential link between autism, bowel disease and Measles-Mumps-Rubella (MMR) vaccine.
I believe that the public lynching and shaming of Dr. Wakefield is unwarranted and overwrought, and that history will ultimately judge who was right and who was wrong about proposing a possible association between vaccination and regressive autistic spectrum disorder (ASD).
Wakefield's critics can condemn, retract, decry and de-license all they want, but that does nothing to stop or alter the march of science, which has come a long way over the past 12 years, and especially in the last year or two. The evidence that autism is increasing at alarming rates, and that some thing (or things) in our environment is wreaking havoc on a vulnerable one-percent of all US children is now so irrefutable that, finally, the federal government is climbing aboard the environmental research bandwagon - way late, but better than never.
This long-overdue paradigm shift will leave many in the scientific community with some proverbial but nonetheless uncomfortable egg on their increasingly irrelevant faces: Those who have protested with shrill certainty that autism is almost purely genetic, and not environmental in nature, and therefore not really increasing at all, will hopefully recede from the debate.
And that begs a nagging question: If those people were dead wrong about environmental factors in autism, could they also be mistaken in their equally heated denials about a possible vaccine-autism link? More bluntly, why should we heed them any longer?
We need to examine a host of environmental factors (air, water, food, medicine, household products and social factors) and how they might interact with vulnerable genes to create the varying collection of symptoms we call "autism." But these triggers almost have to be found in every town of every county of every state in the land - from Maine to Maui.
Are vaccines the only contributing factors to autism? Of course not. Other pharmaceutical products like thalidomide and valporic acid, as well as live mumps virus, have been associated with increased autism risk in prenatal exposures, so we already know that a variety of drugs and bugs can likely make a child autistic.
But, there are now at least six published legal or scientific cases of children regressing into ASD following vaccination - and many more will be revealed in due time.
There was the case of Hannah Poling, in federal vaccine court, in which the government conceded that Hannah's autism was caused by vaccine-induced fever and overstimulation of the immune system that aggravated an asymptomatic and previously undetected dysfunction of her mitochondria. Hannah received nine vaccines in one day, including MMR.
Then there was the Bailey Banks case, in which the court ruled that Petitioners had proven that MMR had directly caused a brain inflammation illness called "acute disseminated encephalomyelitis" (ADEM) which, in turn, had caused PDD-NOS, an autism spectrum disorder, in Bailey.
And last September, a chart review of children with autism and mitochondrial disease, published in the Journal of Child Neurology, looked at 28 children with ASD and mitochondrial disease and found that 17 of them (60.7%) had gone through autistic regression, and 12 of the regressive cases had followed a fever. Among the 12 children who regressed after fever, a third (4) had fever associated with vaccination, just like Hannah Poling.
The authors reported that "recommended vaccination schedules are appropriate in mitochondrial disease," although "fever management appears important for decreasing regression risk."
That conclusion, however, is not supported by some of the world's leading experts on mitochondrial disease, including Dr. Douglas Wallace, a professor of pediatrics and biological chemistry at UC Irvine, and director of its Center for Molecular & Mitochondrial Medicine and Genetics. "We have always advocated spreading the immunizations out as much as possible because every time you vaccinate, you are creating a challenge for the system" in people with mito disorders, Dr. Wallace, who was recently named to the National Academies of Science, testified at a federal vaccine safety meeting.
The possibility that vaccines and mitochondrial disease might be related to autism was also supported in another chart review published in PLoS Online. The authors wrote that mitochondrial autism is not at all rare, and said that, "there might be no difference between the inflammatory or catabolic stress of vaccinations and that of common childhood diseases, which are known precipitants of mitochondrial regression."
In fact, they added, "Large population-based studies will be needed to identify a possible relationship of vaccination with autistic regression in persons with mitochondrial cytopathies."
Another fact that gets little attention in this never-ending debate is that more than 1,300 cases of vaccine injuries have been paid out in vaccine court, in which the court ruled that childhood immunizations caused encephalopathy (brain disease), encephalitis (brain swelling) and/or seizure disorders. Encephalopathy/encephalitis is found in most if not all ASD cases, and seizure disorders in about a third of them.
If we know that vaccines can cause these injuries, is it not reasonable to ask if they can cause similar injuries that lead to autism? (Stay tuned as those 1,300 cases come under closer scrutiny).
Fortunately, the federal government seems to be getting serious about identifying ALL potential environmental factors that could contribute to autism, including a few studies that take in vaccines and the mercury-containing preservative thimerosal. And President Obama's brand-new budget includes increased spending for autism research at NIH, including money to help identify environmental factors that contribute to ASD.
Meanwhile, the National Vaccine Advisory Committee has unanimously endorsed a CDC proposal to study autism as a possible "clinical outcome" of vaccination, and has recommended several more studies pertaining to vaccines and autism, including a feasability study on analyzing vaccinated vs. unvaccinated populations.
And over at the government's leading autism research panel, the Inter-Agency Autism Coordinating Committee (IACC), the Chairman, National Institute of Mental Health Director Dr. Thomas Insel, recently told me that that better diagnosis and reporting could not "explain away this huge increase" in ASD cases.
"There is no question that there has got to be an environmental component here," Insel said.
I asked him if the IACC would ever support direct research into vaccines and autism, now that CDC has rasied the estimated ASD rate from 1-in-150 to 1-in-110, in just two years. "I think what you are going to see with this update is that there is a recognition that we need to look at subgroups who might be particularly responsive to environmental factors," he answered.
So what might those factors include? Well, it turns out that the IACC has unanimously recommend research to determine if certain sub-populations are more susceptible to environmental exposures such as "immune challenges related to naturally occurring infections, vaccines or underlying immune problems."
Nobody seriously thinks that the retraction of The Lancet article, and the international flogging of Dr. Andrew Wakefield, will do anything to make this debate go away. And they are right.
David Kirby's new book, "Animal Factory - The Looming Threat of Industrial Pork, Dairy and Poultry Farms to Humans and the Environment," will be released on March 2, 2010 by St. Martin's Press. It is currently available for pre-order at several online outlets, including here.
8. The Censorship of Autism Treatment
Kim Stagliano, Huffington Post
Last Thursday afternoon, The General Medical Council in London, England announced its decisions in the disciplinary hearing of Dr. Andrew Wakefield, Professor Simon Murch and Professor John Walker-Smith. The ruling was not in their favor. (You can read the official ruling HERE.)
There will likely be other posts here at HuffPost explaining the legal machinations of the GMC hearings and science behind the original The Lancet paper, now retracted. Be sure to look for David Kirby's post on the topic. If you're interested, you can read an eye witness account of the proceedings from Martin Walker, who has followed the GMC hearing from the start.
To understand the bigger picture, I highly recommend Mark Blaxill's Age of Autism post on the current scientific environment for autism research in general in which he says, "The deep and profound censorship occurring around autism science reaches depths that few casual observers can imagine. I have proof." HERE
I'd like to provide the voice of an autism Mom, hoarse from yelling into the wind for a cumulative total of thirty seven years. You see, I have three daughters with autism, ages 15, 13 and 9. Autism isn't an abstract battle ground to me. I don't write about autism to gather virtual high fives from a like minded community or to protect an industry or my own turf. My family eats, sleeps, breathes and ultimately, will die, with autism overshadowing every move we make.
When did autism go from a rare diagnosis to a disorder that affects 1 in 110 children but still warrants little to no medical care outside of psychiatric drugs and behavioral therapy? An autism diagnosis can erase a person's ability to get solid medical care. If you brought your six year old to a hospital in the throes of a seizure, the neurologists would run tests and look for the cause. When I brought my six year old, I was told, "She has autism. She has different circuitry." And then when I requested tests, I was told, "We're just not that aggressive with autism." My child has a brain and a gut and an immune system just like any other child. Why does her autism negate that?
Fortunately, there are doctors like Andrew Wakefield and others, most of whom prefer to keep a low profile as you can imagine, who can look past the behavioral diagnosis to the thrashing or sobbing child and his haggard Mom, exhausted from cleaning up bathroom accidents or cajoling a grapefruit sized BM from her anguished child every few days.
There is joy all over the Internet, back slapping and "Isn't it grand!" that Dr. Wakefield and his colleagues have been brought down so publicly. At the same time, autism is chewing through our country at breakneck speed. 1 in 250 became 1 in 166 which increased to 1 in 150 and is now 1 in 110 with no signs of abating. Schools and families are bearing the brunt of the battle today. Tomorrow, as the children become young adults and "age out" of school, you, the average Huffington Post reader, will be partially responsible for them via your taxes. The finger pointing in Connecticut, where I live, has already begun. A recent newspaper article began with, "Why is the district being punished for having too many white autistic kids?"
I implore you to consider the patients. Remember the children, young adults and older persons with autism for whom GI disorders and other medical conditions are a very real problem.
We need a thousand doctors like Andrew Wakefield, who are willing to risk their careers and reputations in order to find out what is happening to our children and how to heal them. That's what physician scientists do after all. Help and heal.
You can read more articles about the GMC hearings and the treatment of Dr. Wakefield and his colleagues HERE.
Follow Kim Stagliano on Twitter: www.twitter.com/KimStagliano
9. Parents say discredited study on autism still has merit
BY LAUREN SULLIVAN, MEDILL Reports Chicago
Journal retracts pivotal study linking vaccination to autism
The debate between parents of autistic children and medical professionals intensified Tuesday when a 12-year-old study linking the MMR vaccine to autism was retracted.
The United Kingdom’s General Medical Council announced that Dr. Andrew Wakefield, lead author of the 1998 article, had callous disregard for the children in the study and provided false information through his research.
The Illinois State Board of Education requires the MMR vaccine – which immunizes against measles, mumps and rubella – for children entering nursery school, preschool and kindergarten.
Wakefield’s study led to a drop in vaccine rates over the past decade, and parents fear the opt-out trend will expose their children to preventable diseases such as measles.
One Chicago mother is skeptical.
“For me, the benefits far outweigh the risks,” Isabelle Rohr said. “If this trend increases, then disease is going to start spreading faster.”
Rohr’s 19-month-old daughter Violetta – enrolled this year in a Chicago day care – is finishing up her first round of vaccines this week.
“It’s scary for me to imagine a kid spreading a disease through [Violetta’s] school,” Rohr said. “It would make me apprehensive and cautious about who my daughter is classmates with.”
But autism awareness groups, such as Generation Rescue, say that financially driven pharmaceutical companies are responsible for Wakefield’s defamation.
“This is a witch hunt and much ado about nothing,” said J.B. Handley, co-founder of the non-profit, which is based in California. “This is a well-orchestrated ploy by Big Pharma to confuse the public about a study that has been replicated numerous times.”
Handley said that the body of science explored since Wakefield’s publication has made the link between the vaccine and autism stronger. “This somehow means that MMR is safe,” Handley said. “That couldn’t be further from the truth.”
Sara DiFucci, the Chicago coordinator for Talk About Curing Autism, said that parents are indebted to Wakefield for his research.
“Mainstream medicine has done nothing to help my daughter,” DiFucci said. “We’re extremely grateful that Dr. Wakefield understands that our children are in pain and need help.”
DiFucci’s 11-year-old daughter, Amanda, is autistic. “Autism is a living hell day in and day out,” DiFucci said.
DiFucci and other parents of autistic children say that the retraction is disappointing and will likely prevent physicians from further pursuing the link between vaccines and autism. “I don’t want doctors to stop researching out of fear of retaliation,” DiFucci said.
Candice Burns, a spokeswoman for the Centers for Disease Control and Prevention, called the retraction significant.
“It builds on the overwhelming body of research by the world's leading scientists that concludes there is no link between the MMR vaccine and autism,” Burns said in an email.
10. Journal Retracts Study Backing Vaccine-Autism Link
This week, the British medical journal the Lancet formally retracted a 1998 study that helped set off the debate over the safety of vaccines and whether they may be connected to later diagnoses of autism in children.
A public debate has played out in recent years over immunizations and a rise in autism rates: USACE
BY TALEA MILLER
The Lancet medical journal fully retracted a 1998 paper Tuesday that first suggested a link between the measles-mumps-rubella (MMR) vaccine and autism, formally discrediting a key piece of research in the public debate over the vaccine's safety for children.
Multiple studies in the past decade and a review of research on the topic in 2004 by the Institute of Medicine found no scientific evidence the vaccine causes autism in children, but concerns have persisted among consumers and broadened to other vaccines as well.
"It's hard to unring the bell," says Paul Offit, chief of infectious diseases at Children's Hospital of Philadelphia. Offit has long encouraged parents to continue vaccinations amid the public debate over vaccines and autism. He is also co-inventor of a rotavirus vaccine. "That initial publication [in the Lancet] gave birth to the notion that vaccines can cause autism."
The original study examined 12 children in Britain and put forth the hypothesis that the MMR vaccine could be a cause of autism. In Britain, MMR vaccine coverage dropped sharply -- from 92 percent in 1995 to 84 percent in 2002, after the publication of the study. The country has experienced several large measles outbreaks since then.
The British journal's decision to retract the research came after the United Kingdom's General Medical Council's ruling last week that the researchers acted dishonestly and unethically, including carrying out unnecessary invasive tests on children and being paid by lawyers of parents who thought their children had been harmed by the vaccine.
Among its findings on the study's improper practices, the Council's report stated that lead author Andrew Wakefield took blood samples for research from children at his son's birthday party, and paid them each about $8.
Ten of the 13 authors of the original paper partially retracted it in 2004, but Wakefield did not, and the Lancet declined to fully retract the paper at the time. Lancet's editor, Richard Horton, told the Wall Street Journal Tuesday, there wasn't enough "evidence back in 2004 to fully retract the paper but we did have enough concern to persuade the authors to partly retract the paper."
Neal Halsey, director of the Institute for Vaccine Safety at the Johns Hopkins Bloomberg School of Public Health, said the scientific basis for a retraction had been evident for years.
"There were so many problems associated with that study it should have never been published," says Halsey.
More than 20 studies have been conducted since the Lancet study that show there is no association between the MMR vaccine and autism, and no studies have been published in peer-review journals that support the idea, Halsey says.
"It's very important that the article was retracted because it validates that the material that was submitted for publication was not based on good science," he says. "I hope that those parents who still have some apprehension and uncertainty in their minds about MMR will now feel more comfortable having their children immunized and immunized on time."
But the decision seems unlikely to settle what has turned into something of a national feud between U.S. public health officials imploring parents to have their children immunized and parents and consumer advocates, who say they have the right -- and the duty -- to question the possible effects of vaccines on their children.
Sara Difucci, a coordinator for Talk About Curing Autism, a support organization for families with autistic children, said the Lancet decision will not, and should not, affect parents’ concerns about vaccines because there is still so much research that needs to be done on the issue.
“People are not going to have confidence in the MMR vaccine until [researchers] explore the possibility of subsets of children having an adverse reaction,” Difucci said.
Groups like hers considered the 1998 study important, but point to other evidence, like the rising rates of autism in children — an average of 1 in every 110 children in the United States had some form of autism in 2006, up 57 percent from 2002, according to the Centers for Disease Control and Prevention — and the ever-growing vaccine load that parents are advised to give their children.
Mistrust of vaccines also grew in the late 1990s because of thimerosal, an additive containing mercury that had been used in many vaccines for decades. The U.S. public health agencies decided in 1999 it should be eliminated as a precautionary measure because of “the widely acknowledged value of reducing exposure to mercury,” wrote the CDC, though the agency says the low doses of the preservative used in vaccines were never shown to be harmful. Nearly all immunizations for children have been thimerosal-free since 2001.
Then in 2008, a case brought by the family of Hannah Poling, an autistic child from Georgia, to the National Vaccine Injury Compensation Program was made public. In that case, the U.S. government agreed to compensate the family on the theory that vaccines may have aggravated a rare underlying illness that may have predisposed her to symptoms of autism. Julie Gerberding, then-head of the CDC, denied that the case had any greater implications and told a press conference, "This does not represent anything other than a very special situation."
“Let me be very clear that the government has made absolutely no statement indicating that vaccines are a cause of autism,” Gerberding said at that time, according to media accounts.
But the case only furthered suspicion among some parents and in June 2009, the National Vaccine Advisory Committee endorsed further study of links between vaccines and autism in subpopulations, acknowledging that “a small and specific subset of the general population (such as those with mitochondrial dysfunction) may be at elevated risk of reduced neurological functioning, possibly including developing ASD [Austism Spectrum Disorder], subsequent to vaccination.”
Difucci says that, regardless of these developments, she still sees an “unwillingness of mainstream medicine to explore the hypothesis” put out by the Lancet study. She added that this is particularly painful for many parents, including herself, who watched their own children go from normally developing toddlers to showing signs of autism.
“This is a legitimate scientific question,” says Barbara Loe Fisher, president of the National Vaccine Information Center, another advocacy group. “[The retraction] sends a signal to the rest of the scientific community that when you dare to investigate the link between vaccination and autism, you do that at your own professional risk.”
Offit says it is unusual for a journal to retract a study because usually it would fade away if the science is never reproduced, which, in the case of the 1998 Lancet study, it wasn't. The study's staying power is why the retraction is important, he said, adding that he hopes the Lancet's decision will send "a strong message that there was nothing to this science."
However, according to Offit, it is easy to scare people, but not so easy to convince them that something is safe.
"I do think there are people who have come to believe that vaccines cause autism and that belief will not be shaken until there is better data that show the real causes for autism," Offit says. "Maybe that's the only way this ends."
